Taylo 2 Babies

Milestone Acheived

2010-12-16T21:11:00.000-05:00

Tonight marks the very first night in almost two years that I have put Cameron to bed without being connected to a feeding pump. I am so very pleased about this. And even though it wasn't the BEST eating day, he did end it well by drinking 7 oz of whole milk with Carnation Instant Breakfast mixed in for some extra calories.

This may be my only update for a few days. My laptop is busted beyond repair and my replacement is on its way. I can post from my phone but it's a pain, and to post from my husband's computer is like putting someone else's shoes on... Just weird. Obviously I have more info about the boys and their progress to write about, so bear with me and I'll post as soon as I can.

What do we want? When do we want it?

2010-12-13T20:55:00.001-05:00

What does Cameron want? FOOD! And when does he want it? NOW!

I really need to up my cooking game. It's not enough to make kid friendly foods, I now have to make them faster and with more variety. And ALL of it has to be high calorie, which is a real problem because even though he's eating so well there's lots and lots of leftovers. And I swear his grilled cheese that is made with real butter on both sides and extra butter in the pan, mayo on the inside and muenster cheese and a slice of ham tastes far better than my own low calorie version. I might as well make one for each of us right? This will be the year that I gain back all 70lbs of pregnancy weight I lost two years ago on a dairy/lactose free diet. *sigh*

What does Cameron eat? Here's the list:

Ham steak
Buttered noodles (prefers rotelle shaped pasta)
Alfredo sauce on curly shapped noodles
Macaroni & Cheese (both name brand and homemade)
Ravioli (small size, only cheese and spinach for now, working on meat)
Rice with flavoring (ie. chicken & broccoli rice, cheesy rice, fried rice)
Crunchy BBQ Ranch burrito from California Tortilla (no lettuce because it's cut in long shredded strips, no beans because Mommy doesn't like them)
Chicken nuggets (prefers the Tyson dino shaped nuggets but will eat any kind as long as they are soft)
Sloppy Joe sandwiches (smoosh the bread flat and cut into small bite sized squares about thumb size)
Artichoke Flan from Wegman's (Mommy loves this too.)
Cheese pizza
Mini quiches
Mini pancakes with syrup and butter
French fries
Sweet potato fries
Potato pancakes with veggies
Veggie sticks and disks (he's not discriminate against shape)
Cheese puffs and Smart Puffs
Skinny pretzel sticks (aka. kretzels)

Stove Top Stuffing (He was rolling his eyes back in his head in ecstasy tonight when he tried it.)
Steamed carrot slices
Steamed green beans
Steamed broccoli
Mild cheddar cheese
Some kind of white cheese at a birthday party, trying to figure out what it was
Diced peaches
Mandarin oranges in syrup
Diced pears (but he's not crazy about them)
Grapes
Raisins
Apple (must be cut up in small chunks without skin)
Banana
Kix cereal
Cocoa Pebbles cereal (must have what Daddy is having)
Cheerios
Nilla Wafers
Fig Neutons
Teddy Grahams (honey only)
Goldfish crackers
Ritz Crackers
Gerber freeze dried apple, banana, strawberry
Gerber fruit twist snacks (these are a fantastic chewing exercise for kids)
Cupcakes
Birthday cake
Chocolate chip cookies (but only the soft kind)
Brownies (no nuts)
Baked apples in cinamon
Yogurt
Some Greek yogurts
Scrambled egg with butter, heavy whipping creme and cheese
Toast with butter and sometimes with honey
Grilled cheese
Grilled diced ham & cheese (must be diced lunch meat because he can't pull the meat apart with his teeth yet)
Chicken & Stars soup
Entamen's Little Bite blueberry muffins
Hot Dogs
Vienna Sausages
Whole milk
Carnation Instant Breakfast
Apple & Eve juice in Punch, Berry, or Apple flavors watered down half & half
Water

I feel like I'm forgetting something on this list. And I'm thrilled at the diversity of the foods Cameron eats too, I owe that to the wonderful conditioning that our feeding clinic at Mt. Washington has helped us achieve. Now I'm in constant search for some new great foods to try with him that are simple and quick to make but have lots of bang for our buck in calories. It's a bonus if it's a food I can easily make fresh in small quantities because I end up eating leftovers or throwing much of it out because he can't eat it all and Evan refuses to touch food to his teeth.

What are your toddler's favorite foods?

Santa Came to Town

2010-12-10T20:23:00.000-05:00

Every year Santa comes to town for a pre-Christmas tour. He hitches a ride on the back of an enormous red fire truck and he and all his volunteer fire department buddies drive through the neighborhood. They have flashing lights, horns, sirens and candy canes galore. And most importantly they have Santa lit up with a big spotlight, so even the tiniest Who in Whoville can't miss him from the cozyness of their front door. It's a toss up for which is cooler when you are a two year old with a penchant for fire engines or any vehicle with flashing lights and sirens. I hope that Santa doesn't mind that this year he was a bit overshadowed by his mode of transportation.

I mean, the Man in Red is awesome. But Cameron and Evan don't really understand who he is. He's just a very nice guy with a big white beard, wearing Cameron's second favorite color (the first is pink), and he has a funny laugh that Evan likes. They don't know exactly who he is or what he does. They don't get who the Elf on the Shelf is despite the fact that we keep reading his story to them. And they don't even really understand what presents are. But they know what a fire truck is and boy is it "super cool".

Mr. Claus stopped right in front of our house tonight. Lights a flashing, sirens full steam. You would have thought this might freak the boys out to be so close to all this commotion. Evan was speechless, jaw slack and eyes big as saucers. He pointed and quietly mouthed in a soft little voice uninteligable over the noise of the trucks, "Nee-nahs! Nee-nahs!" (Nee-nah is what a fire truck says, so that's what the boys call them even though they know they are called fire trucks.) Cameron was yammering away, "Look Mommy! Look Mommy! You see the fire trucks? You see the am-beh-lance? Hi Santa on fire truck! Hi fire truck! I love nee-nah! Look at the nee-nah Mommy!" The volunteer fire fighters would jump off the truck and run to each family in their yard and hand out candy canes. We gave them our donations of non-perishable foods for their food drive too. Then we watched them slowly drive down the street. Thankfully it was chilly, but not cold and not windy at all so we were able to stand in our yard to watch as the trucks left our street entirely.

When it became evident that the trucks were leaving us behind and not coming back Evan melted down with some hysterical crying. He bawled in Drew's arms, then when set down on the floor of the playroom he folded himself over crying more. Eventually he settled down into a very overtired melancholy mood, not saying too much, but I know he was thinking about the experience.

For an hour after Santa and his caravan of flashing vehicles made their way out of sight Cameron was still going on, and on, and on, and on about the Nee-nahs. He pulled out his favorite toy, the Fisher Price Little People fire truck, the fire man and a king from another Little People's set and reenacted what he saw and heard many times over.

I'm already enjoying this holiday season through their eyes all over again. When they are this little every year is a whole new experience. I'm excited to see what they think of the Christmas tree when we finally put it up. And hopefully they will have as pleasant an experience when they finally get to meet Santa up close again this year.

How Things Are Said and Done

2010-12-07T14:22:00.000-05:00

When something is upside down, be it a kid, a dog, or an inanimate object it is always referred to as "ups-sid down baby".

When someone falls, or pretends to fall, they ask me "Are you okay?" over and over and over and over until I repeat the question back. Often our toys have great crashes and the boys ask them this question until they are righted and doing whatever toys are made to do.

Telephone calls are always important and urgent. "Hello? Yesth? Okay. Bye." If it's Evan then the word hello is pronounced with a French accent, "Ahllo?" Sometimes it's Elmo or Poppop calling. Occasionally Granny calls with urgent news, to which she gets hung up on promptly lest the phone self destruct in 5 seconds.

Both boys can say their full alphabet with occasional help. Evan can count to 13 and Cameron to 11. And they can count backwards from 5. When counting down you must always say "Bwast Off!"

Cameron: "Oh boy! I can't wait."

Cameron: "Oh, Cah-men drive de car? Nooooo? Oh, okay, I'll try."

Cameron: "Mommy, get de telephone? Oh-kaaaay, Cah-men get de telephone." This is a diversionary tactic used during meals or nap time.

Cameron knows to say "Oh-kay, see you latter Cameron. Bye-bye, hag (have) a nice day. See you soon, Cameron." when he's leaving or the person visiting is leaving us. And what he means is that you are to say these things to him, and he will repeat the words over and over until you say them.

Every morning Cameron wakes up and tells me something unintelligible that ALWAYS involves a helicopter. I have no idea what he's telling me, but he always follows his discussion with "Mommy, you see a hec-a-topter?"

Evan: "Ah yooh oh-kay?" is said whenever he perceives himself to be hurt, roughed up, or upset in any way. Usually said at the same time as he folds himself over in half with forehead to feet or floor, face pouting.

Evan: Tackling my legs from the side or behind, "Aw, I wuv yoo."

Evan now calls himself Ennan or Eh-than. It seems both boys refer to themselves in the third person.

This week the boys finally have accepted the fact that occasionally they have to hold hands, and that it can be fun. It started with Evan trying to get Cameron to start a game of chase. He grabs Cameron's hand and for a few seconds they walk side by side holding hands. It makes my heart melt to see it, even if it's nano-brief. And then the running and squealing begins. Yesterday during a playdate with some other boys we played Ring Around The Rosie. All the boys in the group are delayed in some way, the unanimous common delays of the group are language and sensory issues. At this age kids will parallel play, which is playing side by side or near each other but not interacting directly with one another. To break this barrier you have to get them to do physical things, so playing Ring Around the Rosie is perfect because they have to hold another person's hand, they have to understand that there are rules to the game (hold hands, spin as a group in a circle, let go at a designated point, fall down), and that it's fun and repetitive for ongoing play. But to get sensory adverse kids to hold hands is difficult to put it mildly. But for the first time, they finally got the concept that it's okay to hold hands. This is a good sign that we are moving toward being stroller free. If they can hold hands, then it's slightly less likely that I will have to run in two different directions at the same time. Mommy is looking forward to that day.

The boys new favorite thing to do is play chase with each other. No words are involved, though if there are any it's "I'm gonna git you." Mostly it's Evan grabbing Cameron by the collar or hand and pulling him until Cameron knows that he's supposed to chase his brother, then the shrieks and peals of laughter follow. And it usually ends up with someone walking into a wall or door or falling on the floor, and of course the tears. After a minute of "Are yoo okay?" they are back at it going through the kitchen and around the living room and back through the kitchen over and over and over.

Video Messages from Santa

2010-11-29T23:03:00.003-05:00

Image courtesy of tomhortonstalent.com

Video message directly from Santa to Cameron:
http://www.portablenorthpole.tv/watch/ylXX_-srymQKVSXJe7FXVg

Video message directly from Santa to Evan:
http://www.portablenorthpole.tv/watch/4XMkTkOu8ecmanzsb4_4ow

*Please note, Santa is VERY clear about his expectations for the boys this year. Specifically Cameron is to be sure to eat all his veggies, and Evan should not be afraid to try new foods. I know they can do it and that Santa and Daddy and I will be super proud of the boys as always. And to make sure that Evan and Cameron follow through with doing as Santa has asked, a special Elf representative by the name of Deeda will be present at all times to observe and give regular and factual progress reports to jolly old St. Nick.

Happy Belated Thanksgiving

2010-11-29T22:59:00.000-05:00

We have so much to be thankful this year. Most importantly that the boys are eating. In whatever way they are comfortable, Cameron and Evan are eating. Sometimes it's great, sometimes it's not so great, but they do eat. And I could not be happier about this.

Today Is National Prematurity Awareness Day

2010-11-17T00:12:00.000-05:00

This is me on March 15, 2008. I was 26 weeks and 5 days pregnant with twins. I was just barely in my third trimester. I was not nearly as big as I should have been. I was just told not one hour prior to this photo being taken that I would be admitted to the hospital for 24 hour monitoring for the duration of the pregnancy. This is my only picture of me pregnant, I wish I had taken so many more.

Do I look scared to you? No? Not even a little? Because I was terrified.

And really the scared that I was was just the tip of the ice berg that had been building up and up and up and up from the moment we learned that we were having twins and that one of them was struggling with severe Intra Uterine Growth Restriction (IUGR) and might not make it. And that his brother's condition was somewhat much better even though he too had significant IUGR but was absolutely certain to be high risk due to risks from prematurity. That we had to chose to risk one to save the other or possibly risk losing both babies. We counted the days, we were told to prepare as much as we could ahead of time.

I did the best I could to do as much as I could with preparing the nursery, trying to figure out the basic items we'd need for twins so that things were ready before I couldn't do them anymore. How I loved being pregnant. Even with the constant threat of losing one or both boys, the knowledge that we were likely to have preemies, I felt great. It was just starting to feel real, just starting to feel huge and really full. It was so wonderful. The lava lamp bubbles I'd been feeling were now pretty solid actual kicks, but not strong enough that anyone touching my belly could feel. I was not scared of having twins by this point. I was terrified, and more terrified that they would not be healthy, not live.

Fifteen days later my amazing doctor asked me, "Are you ready to become a Mom? Because you need to deliver in the next forty-five minutes." Become a mother of twins eleven weeks too soon.

And forty-five minutes later I delivered Cameron Andrew weighing 2lbs 15oz. I got to hear him cry two teeny tiny little squeaks. They had warned me I might not hear anything at all so we were instantly filled with pure joy. My husband got to take this one picture and I could see Cameron, just barely, while laying on the operating table before they whisked him away.

And five minutes later, after much difficulty trying to reach and pull him out because of his size and positioning, Evan Alexander was born weighing 1lb 7oz. I did not hear him cry. I did not know if he was even alive for what seemed like several minutes. He had gone into full reversal of blood flow in utero and his heart was in distress. They rushed him past me for the quickest peek before rushing him to the NICU. There was no chance to get a picture of him, I did not see much but a blur of a little bitty pink forehead and lots of tape and tubes and wires zoom past me.

I finally was able to see the boys after recovery four hours later. I could not touch them for two more days. And when I could touch them I could only lay my finger tips on them gently because their skin was so thin it could bruise and tear. I was finally able to hold Cameron two long days later and Evan three even longer days later though it was only for 15minutes.

They lived in the level III NICU at Anne Arundel Medical Center Hospital for 67 and 68 days. Cameron came home on oxygen and a heart and lung monitor and weighed only 6lbs 4oz. Evan came home with no tubes or wires but weighing only 3lbs 14oz. Do you know how horrible it is to have someone ask if that's a real baby in the car seat?

It is because of advances in medical technology today that I have my boys. It is because there are talented strong souls who have chosen to dedicate their lives, their profession to saving the lives of infants and mothers. It is because of our experience that I post today. Before becoming pregnant I did not know, I could not appreciate what the word "Preemie" meant. It was always just really tiny baby clothes. Not a face or a name. Just an extra small adorable baby.

But real preemies are so much more. They are fighters of the tiniest and strongest kind. My preemies have faced several serious staff infections, dozens and dozens of IV's and blood tests, eye exams that are like something out of an alien abduction science fiction movie, being kept from being held by their mother because they were too tiny, too fragile to be touched and held. They have been intubated and re-intubated, had their stomachs drained, fought off Necrotizing enterocolitis (NEC), fed TPN through an IV in their belly button instead of breastmilk by mouth. They've both stopped breathing and both have had their heart stop more than once because they were just too little to remember to breath and beat their little hearts with holes in them. They both continue to fight a wicked battle for growth with feeding tubes causing sensory issues and oral aversions and a vicious case of reflux. All of this due to their prematurity. And this is a pretty "easy" story compared to many of their preemie peers who've experienced and survived much harder trials.

Today they look nothing like what you imagine a "Preemie" looks like. They are catching up on all their developmental growth and abilities. They are eating better and better every day. And they are amazing fighters. But it would not have been this way if we didn't have the wonderful medical technology and trained professionals to give these children a chance at the fight.

So when you see a local business asking for donations to the March of Dimes, please know that the face of what they do is not a cute little preemie sized onsie. It's not a fat pudgy baby. It's not the card cut out in the shape of a balloon with a space for the clerk to write your name in black marker. It's not the itsy bitsy cute adorable micro preemie diapers that wouldn't fit a Cabbage Patch doll.

My hand, micro-preemie diaper, preemie diaper, size 3 diaper.

It's the child and the families, the professionals and the specialized equipment who help them live and grow.

November 17, 2010 is the national Prematurity Awareness Day. March of Dimes at CMU is inviting you to wear purple on this day to support all of those who were born premature, and to fight for the prevention of prematurity.

Every year, more than half a million babies are born prematurely in the United States. The rate of premature birth has risen by 30 percent since 1981.

Premature birth is the leading cause of newborn death worldwide. Even babies born just a few weeks too soon can face serious health challenges and are at risk of lifelong disabilities. Premature birth costs society more than $26 billion a year.

We need to fight. Because no baby should ever have to. Please consider a charitable donation of your time, your money, your ear, your mind, or your voice. Anything to help more babies around the world have the chances that my children were given would be appreciated. Thank you.

That's The Very Last Time

2010-11-16T20:09:00.001-05:00

That post yesterday will be the very last time I ever mention that either Cameron or Evan have not puked in however many days it might be. Tonight just before bed while still messing around in the playroom Cameron started coughing and it continued into a vomit. All he had in his stomach was a little bit of undigested noodles and carrots and juice but it was still a puke and we're not exactly sure what caused it. He's had a runny nose today, some sneezing and coughing but nothing significant. No fever either, so I can only assume reflux or a random gag triggered by something that went volcanic. Either way, I'm not going to post when the boys have stopped puking ever again. Because every time I do, within 24 hours they puke. I've had enough puke, I'm so done with it. We are the masters at puking, there are very few people who've ever dealt with more puke than us and they all read this blog. For the record, you can just go ahead and assume that if we've removed the boys feeding tubes from their bellies that they don't reflux vomit any more. And we'll never count pukes again. M'kay?

Insatiably Sweet

2010-11-15T22:16:00.000-05:00

Wonders never cease. Last week was our first week hiatus from taking the Periactin. We are supposed to do the Periactin four weeks and then take one week off so that their bodies don't build up too much of a tolerance to the medication. It was a true test to see if the medicine is really getting them over an eating hurdle. And I can officially say that for Cameron it has. It's a miracle drug and works exactly like it's supposed to do, though I know for many kids it does nothing for them.

As you might have read in my earlier post, during last week there was a significant drop in the amount of volume of puree foods and liquids Cameron was willing to tolerate, but his interest in eating real food actually increased. At Wegman's grocery store I got an egg and cheese and artichoke frittata (more of like an omelet than a frittata) and he ate 1/2 of that artichoke and all. He also saw a banana on the kitchen counter and asked for it. I gave him about a 2" whole, unmashed section of the banana and he ate it happily. Pretty much he's just been munching non-stop for a whole week.

And this weekend, oh this weekend.... The boy is a bottomless pit! Saturday we re-started our regiment of Periactin, but this time I only gave 2mls after breakfast around 9am. Within an hour he was demanding food. "Cameron, you hungry! Mommy, you hungry! Cameron eat breakfast? Cameron eat snack?" It's so beautiful to hear, even if it's repeated over and over and over and over in a increasingly faster and higher pitch. He now easily consumes one full cup of diced peaches in syrup, his new favorite snack, which he calls "Sweet" not peaches. He also eats about 1 cup of Veggie Sticks a day or more, up to 4 grapes cut in quarters at a sitting, a full serving of freeze dried apple chunks. And every meal he not only eats 1/4 of some kind of grilled cheese sandwich or 1 to 2 full Sweedish meatballs, he also eats a full 6oz of a stage 3 puree plus up to 4oz of whole milk. On Sunday I almost thought I was asleep and dreaming because in under 45minutes he consumed one FULL banana and demanded more. (I drew the line at one full banana. Don't want to freak his system out more than it already has been.) Then tonight he ate about 1 1/2 of meatballs, 1/2 serving of steamed green beans for which he demanded sight unseen until I put them on his plate, plus 5oz of milk and 5oz of a stage 3 puree.

I can not believe this kid is eating like a typical child. I am flabbergasted at the suddenness of the change in his eating. It is just plain WEIRD to be sitting at a meal with my husband feeding Evan and I don't have to do anything because Cameron is now self feeding everything but the purees. I blinked and POOF! He's eating! How did this happen??

For Evan, I think that if he were past the hurdle of touching food to his teeth, maybe if he were already nibbling foods on occasion, a good bit more interested in the food on MY plate, then I feel this medicine would definitely have him eating bigger bites and more quantity. But as it is, he's hungrier and more willing to eat what I make him take on the spoon, so he's eating 4oz of stage 2 foods pretty well and consistently. But he can not tolerate solids in his mouth beyond rolling one goldfish cracker around on his tongue until it's soggy and all the salt is gone. He will take a piece of steak or a meatball speared on the end of a fork and suck on it but he will not eat it or nibble. We play games to get him to touch food to his teeth, he enjoys the games and will play along but barely. He definitely knows that it makes us happy to have food touch his teeth because he tells us he's doing it, he shows us and looks at us seeking approval and encouragement, which we try to give in spades. He even tells us frequently, "Enan is eating." I just wish I could figure out a way to make him comfortable to bite into foods just the teeniest tiniest bit, a tweezer sized pinch like Cameron started out doing. Then I would know that he's on his way and we are not at a permanent stale mate. I have not given up, but it would be nice to see some improvement sooner rather than who knows when.

At least now I can put food in front of one kid and spoon feed another at the same time. If you have never tried to feed two resistant toddlers at the same time, even two healthy no problem eaters that need to be fed by you at the same time then let me assure you, it is STRESSFUL. We've been fighting this battle to get them to an acceptable weight and growth pattern, a healthy sleep pattern not interrupted by spontaneous vomit, a moderately normal approach to eating their entire lives. I don't even know what it's like to have a normal life with toddlers, without always having to worry about this weight gain or that amount of vomit every two to four hours twenty-four hours a day. To think that all of the sudden I have to actually come up with meal plans for Cameron so I always have foods for him to consume is just awesome and strange at the same time. I carry food on my person at all times for that instant that someone has an inkling that they want some food to munch on. I'm excited for the day that all of this clicks for Evan and he finds the pleasure and joy that Cameron has now found in food. All I need to do now for Cameron is teach him to take medicines by mouth, which will be tricky but definitely doable.

We have our follow up with the GI doctor in 4 weeks to review weight gain and decide if it is time to wean the boys off of all formula as well as reflux medication. I am hoping that Evan has a breakthrough coming and that we'll see great weight gain and that she'll cut his formula through the pump down to 150mls at night. But he's still puking maybe once a week at night, so I am unsure that he will be ready for that step as it really depends on his being reflux free.

I am however certain that at his rate, I can probably take Cameron off his 1 hour a night 150mls bolus feeding before we ever go to that appointment. And I'm certain that, because Cameron has not vomited at all in TWO MONTHS, I can begin to ween him off of his reflux medication, Prevacid, starting then too. Then once he's off the Prevacid we will ween him off of the Periactin hunger medication and he will be a completely typical 2 year old toddler. And then with enormous luck maybe we'll survive the winter without any illnesses that require we use the feeding tube for any reason, in which case we will remove his G tube completely. Just in time for his birthday.

Edit: Just after I finished typing this I heard Cameron's pump beeping that it was done for the night. When I went to go unplug him from the pump I discovered the poor thing snoring in a big puddle of his cold wet formula. The medicine port had popped open somehow, yet again, after we'd plugged him in and double checked that the medicine port was closed. So he didn't get all of his 150mls of formula tonight, I have no idea exactly how much he got. But he was a good sport about our having to strip him and his bed down and remake it all over and put new jammies. I will be so happy to see these feeding pumps go.

Here are some pictures from our week...

Chillin with cousin Lucy.

And cousin Timmy.

And cousin Dillan.

You know that old saying? Some things....

.... Never change. (Above: cousin Timmy, Evan in pillows, and Uncle Chris. Below: Uncle Mike at the same age as Evan and Drew, aka Daddy. Same house, same location in living room, slightly newer sofa.)

Because we are superheros, we are practicing to fly like them too.

Come on Mom! You can't catch us!

A demonstration on teamwork.

The boys love to tell me that we are Shape Searchers. They tell me when they see shapes. Evan pointed out the octagon (or as he calls it "ohk-a-gone") and the rectangle ("rek-angle") on our walk back from the playground.

This is as close as Evan will get to biting any solid food.

And this is probably one of my favorite pictures of Evan.

Cameron, do you like grilled cheese sandwiches? Yes Mommy!

Chewie, sneaking in to the playroom for his afternoon siesta, which happens to be at the same time as the boys' nap.

Cameron is in the background shoving fists full of noodles in his mouth, while Evan is figuring out how to stab his meatball.

Uh, you really want me to eat this banana? (24hours later he ate a whole banana)

Feeding a toddler should always be this simple. Cameron's first full cup of diced peaches.

Evan, who was not interested in the peaches decided to visit Chewie.

This is Evan watching Cameron eat his peaches.

And this is Cameron, finishing his peaches.

The boys love to stop and smell the flowers, literally. Sometimes we accidentally come away with a petal stuck to our lip or maybe leave behind a crushed bloom or two or four. But we do love flowers.

See the tongue sticking out on Evan. This is his new thing. The therapists told me months ago, back when Cameron was doing this too, that this is a good sign of a food tolerance development coming. Evan has his tongue out all the time, especially when he's focusing really diligently on something. I love it.

By the way, this toy is a toddler magic wand. It lights up and spins and vibrates and plays music all at the touch of one button.

It is also the perfect $9 toddler weapon. We convinced the boys to put them back.

Yay for a great visit with cousins Phillipe and Sasha!

These are the faces of "get me out of this thing NOW".

I love Homestead Gardens so much.

Evan has keen eyes and often randomly shouts "A clue! A clue!" Then runs to peer closely at what he thinks is the next clue to Blue's mystery.

Another Hollow Leg Day

2010-11-10T21:33:00.000-05:00

I can not believe this is happening. It's like a dream come true. I have to pinch myself.

Today Cameron has consumed the following food items by mouth:

9.5oz of whole milk
4+oz of juice
1oz of water
2 inches of buttered toast
1 jar of puree (at 180cal for 4oz) for breakfast
1 jar of puree (80 cal for 4oz) for lunch
1 jar of puree (120 cal for 4oz) for dinner
4 yogurt melts
6 goldfish
2 small skinny pretzel sticks
4 BBQ flavored potato chips
almost 1/4 of a grilled cheese sandwich
about 1/4 cup of buttered noodles with swiss cheese

Can you believe this?? And he's not even on any Periactin this week!! My heart is racing. I was stunned that he was at all interested in my grilled cheese sandwich, never mind that he would over the course of 45minutes nibble nearly 1/4 of it happily.

And Evan is eating better each day, just a little more volume in his liquids and purees. He's actively showing off his interest in taking new foods, tasting them (he loved to lick the grilled cheese, I used extra butter), and now he's making a point of showing me he can touch his top teeth to food. He won't touch his bottom teeth, but that's okay for now. I'll take it, because touching food to his teeth has taking 9 long months to convince him to try doing.

The boys are super cuddly and I am getting lots of spontaneous hugs and kisses and "I wuv youuuuu Mommy" throughout the day.

Chew Baby Chew

2010-11-09T21:55:00.000-05:00

Today I gave the feeding clinic therapist raisins to try with Cameron. He loves them. He hates to touch them, but within 5 minutes of work he was shoving two raisins and a whole goldfish in his mouth at the same time. His current challenges are touching sticky foods, chewing food, then knowing when he's chewed it enough that it's time to swallow. Raisins are perfect, and they are fruit which he does not like outside of a puree form, and should help with the constipation issues he's having recently. It's really funny to watch him eat them too. He will take the first raisin in a pincher grasp and eat it no problem. But then the next one he starts to use the pincher grasp, balks at it looking at his fingers in disgust, then uses both hands with the palms facing upward and pinches the raisin between the outside of his hands on the pinkie finger side and sort of tosses/tongues it into his mouth. Then the next raisin he uses the pincher grasp. Then the next he uses the funny hand thing again. The therapist was really impressed, said it shows he now finds some aspects of eating pleasurable enough to find away to overcome his sensory issues to eat food. My Big Boy is growing up!!

Sleep Cameron

2010-11-06T21:54:00.000-04:00

Tonight we visited with Mom-mom and Pop-pop and all our cousins, Tim, Lucy, and baby Dillan, were there for the first time under one roof. Made the grandparents giddy with joy at the utter chaos. We had a great time and the boys were just happy as can be. Cameron ate about two inches of cheese pizza, three cheese puffs (13 calories per puff), and 3ounces of a stage 3 puree, and only maybe 4oz of juice. Evan sucked on a piece of pepperoni like it was pure ecstasy, letting it hang out of his mouth and putting his hands up as if to say "Look Ma! No hands!" He also gummed and licked a piece of pizza until it was soggy pulp, then ate 4ounces of his favorite stage 2 puree (which happens to be 110calories for 4oz) and drank about 5oz of juice. The cousins played and played and then it was time to go home. Then on the way home the boys fell asleep.

Usually when we have to move Cameron from his car seat he gets hell-a mad and pitches a complete fit until we put him in his crib, but for the first time ever he didn't even bother to bat an eyelash. Instead, when I laid him down in his crib to hook him up to his feeding pump he lifted up his shirt, scratched his belly with both hands yawning and smacking his lips, then rolled over and said, "Cahmon sweeping." and pretended to snore loudly a couple of times before actually going back to a peaceful sleep. So stinking cute.

Adjustment

2010-11-05T14:05:00.000-04:00

This new feeding tube regimen is taking some getting used to for both me and the boys. They both notice that I'm not connecting them to a feeding tube at nap time and ask me "Mommy, plug you in?" and lift up their shirts. But then they are so tired from the Periactin that when I cover them with the blanket they're asleep that fast. And they are more cranky and whiny and super temperamental because they are much hungrier.

For me it's quite an adjustment because my days have to be so regimented about being prepared with their pumps. I have a routine in the morning for cleaning and prepping their feeding pumps that I no longer have to do until just before bed time. I feel at a loss, like something is missing. It's like finding yourself at some random point in the day standing in front of the open refrigerator door wondering what you're looking for and why you're standing there for so long.

I did have huge panic attacks yesterday because the boys ate and drank so poorly, but then in hind sight, it wasn't that they ate poorly, they just didn't eat more than they usually consume to make up for the calories and fluids they are now not getting in the pump. It's okay, it's just one day, the first day of this new routine. They are eating slightly better today, if not behaving more abominably because of their hunger and fatigue. I just have to remember what my friends Trish and Becky have experienced with their own tube weening kids, keep it in my head like a mantra. Today will be a great day, tomorrow and the next day and maybe two more days it will be really horrible, then suddenly it's another glorious hollow leg day where they eat all the missed calories in one meal. It's going to take time to come to terms with what other moms of Failure to Thrive kids who don't have feeding tubes deal with every day. At least I have the tubes to fall back on, they are a safety net for which we struggled and stressed and researched our butts off, and fought with doctors over time and again. I don't regret the tubes, I don't believe that the boys would have survived without them. But my heart aches for my friends who don't have that safety net, one no one wants and should do everything to avoid. But damn it's nice to know that it's there.

We have been putting the boys to bed 15 minutes later each night this week in hopes that we will have a smoother transition for Daylight Savings Time this weekend. I think it's finally paying off because instead of both boys waking at 6am, Evan woke at 5:30am (nightmares? hunger?) and once we soothed him he slept until 9am!! Cameron slept until 7:45am. As for eating, it's far easier to feed these guys on a one on one basis, but rarely ever possible. Today we did and it was great. At lunch we took the boys to visit a new (to us) grocery store, Wegman's, and I brought home a hot lunch for myself. Cameron took one look at it and demanded some of my chicken. Only it wasn't my chicken he wanted, since when I offered it to him he shoved it out of his way. I pointed to my fairly peppery Egg, Cheese and Artichoke fritatta and he went crazy. I gave him a little and he wolfed it down demanding more. He ate half of it (I pulled out the big chunks of artichoke that I know he would have trouble with) and was shocked that he loved it, rolling his eyes like it was ecstasy not caring that it was peppery at all. I offered it to Evan, who took a bite and pushed it out with his tongue, but he didn't react negatively. He just didn't know how to eat it because it wasn't puree and it wasn't a solid, so he ejected it. I will be going back to Wegman's to get more and the recipe to make it at home this afternoon.

Happy Halloween Treats

2010-11-03T21:09:00.001-04:00

I'm so emotionally drained and physically exhausted (from a bad night's sleep) right now so my hands are shaking and I'm feeling faklemped from the unexpected news we got at the GI's appointment today. I have been trying to do an update on how the boys are doing with the new medicine Periactin and really should have posted last night. So I'll start with that info and then tell you why I'm in a tizzy of emotion from the doctor's visit.

The week that we started the boys on the Periactin was only rough that first day. The medicine really did what we had hoped it would do, make them feel starving hungry. That is until they got Hand, Foot and Mouth (I'll call it HFM), which is a common and highly contagious and miserable virus. It caused lots of bad mouth sores so obviously we discontinued giving the Periactin until they were better. Thankfully the Periactin did the trick following the recovery from HFM because I am certain without this medicine they would have taking a good month to get back on track with their eating since the mouth sores were so painful. Within two weeks we're back to where we were consistently drinking 4+ ounces of liquids each meal and eating 4+ ounces of stage 2 and stage 3 purees, and Cameron is back to eating solids throughout the day (about 5 to 10 Gerber dried apple cubes, 6 to 8 goldfish crackers, 4 to 6 cheese puff curls at 13calories each, 1 to 3 Ritz Bitz cheese crackers at 11calories a pop - all in one day). Evan can not tolerate texture at all, but he lets me brush his teeth and tongue without too much fuss, and will happily suck on a cracker or cheese puff or piece of dried apple, he just will NOT let any food touch his teeth.

Then the boys caught head colds which made tasting foods tough but, again because of the Periactin we muscled through it. And the nice side effect of Periactin is that it is really first and foremost an antihistamine so it dries up their post nasal drip quite nicely so that we didn't have the typical amounts of gag reflex vomiting that we're so used to. The fluid intake is still low ever since getting the HFM illness, but it's creeping back up so I'm not as worried as I was a few days ago when it looked like things might get ugly.

In fact, Cameron hasn't had a reflux/GERD related vomit in about three and a half weeks. He has had one or two gag reflex vomits because of feeding therapy or behavioral vomiting from getting upset and crying too hard, but I don't actually count those since they are not directly related to reflux. And Evan has been trending very nicely with only one vomit about every five to seven days, usually on a Sunday or Monday night.

As for the toddler hell that we experienced with our first dose of Periactin, well that is ever looming over my head when I make the decision each morning about whether or not to give the boys their morning dose. Per doctor's orders, I have the flexibility to give up to 5mls in the morning or cut out the morning dosage all together and just give them the evening dosage. I am playing around with the timing of administering the medicine to them and the amount given to find the right balance. If I give them too much too early they conk out around 10:30am which is right in the middle of all our therapies and fun activities every day. And if they sleep that early it's usually a power nap of about 20 minutes and then they are up the rest of the day. And it's far worse when one is up and the other is asleep, only to swap rolls after three hours. Mommy needs her nap time. In the evening I give them the full dose about an hour before dinner so that we maximize the hunger drive because I do see that they are most hungry and consume the most liquids and solids when given the full dose, and get the added bonus of a very easy bed time and a full night's sleep.

On the sleep front Periactin has been very good for us in helping to regulate their sleep. We have been on a very excellent sleep pattern for about a year now, but I have to be very strict about it or we pay the price for several days and see an increase in reflux attacks when the boys don't get enough sleep on a regular routine.

So what has me all giddy and emotional today? Today we went back to the GI for a follow up to starting the Periactin so that we could see if there was any impact on their weight gain to warrant further use of the Periactin, and maybe to ween off more formula through the feeding pump. The more they eat by mouth, the more time off the feeding pumps. The more time off feeding pumps (which is always during a sleeping period like naps or at night) the less chance of strangulation by feeding tube in their sleep which = mommy can relax and re-sleep train herself back to a relatively normal person.

And what happened at the appointment hit me like a ton of bricks. I did NOT expect this at all. In three weeks, after having been sick with HFM and then a cold after that, Cameron is actually bumped his weight to height ratio back into the 95% and is considered on the cusp of being considered borderline obese. Yep! That's right, you did not read that wrong. My GI and her Nutritionist were giddy with excitement when they met with me to discuss how things have been going. They said because Cameron is being more willing and adventurous with the solid foods and consuming more volume despite being sick, he's exceeding our goal of 4 to 10grams a month. He gained 27grams this month!!!!! What we are doing seems to be working, and if we continue without making changes to his formula intake he will be on the charts as obese within a month. To counteract this trend and to maintain his perfect toddler physique we need to drastically cut back on the amount of high calorie formula he's getting through his feeding pump.

(I'm tearing up now, bear with me as I type blindly.)

We've been giving Cameron 500mls (that's a little more than 17oz) per day, split in two feedings; one at nap time for 200mls and then the bedtime bolus of 300mls. We are going to cut out the nap time bolus completely and only give him 150mls (that's only 5oz) at bedtime. (Okay, I lied, I'm sobbing now.) He will literally be connected to a feeding pump for all of one hour per day. Once upon a time the boys were connected to feeding pumps 24hours a day.

Evan is doing extremely well too and I'm so excited that the recent illnesses haven't set us further back and that he's showing great interest in trying to sample food from my plate. He gained 10grams, right on target. And he would likely be doing the same as Cameron if he would only just trust that it's okay to bite and chew food and move it around on his tongue. He puts food in his mouth, rolls it around a little before spitting it out. If the food gets too far back in his mouth he panics and gags and vomits it out or swallows it in an unpleasant fashion. The GI and Nutritionist were thrilled that he's doing so well considering he's so sensory adverse and that HFM really hit him hard. Since he's right on track, if this pattern keeps up and he doesn't get set back by another illness he too will be headed to that beautiful growth chart mark I like to think of as "Little Fatty". Since we want to maintain his beautiful physique as well as challenge him to feel a little more hunger so that it will hopefully make him take the plunge into biting and chewing we are also going to cut back on his formula intake.

Evan has also been getting 500mls (about almost 17oz) of formula through his feeding tube during sleep times just like Cameron. He gets 200mls at nap time, and 300mls at night. Now we will be dropping the nap time bolus completely and he will only be getting 300mls at night over the course of 3 hours. (I think I might have a mental breakdown now.)

So now our plans are heading full steam ahead to get the boys off their feeding tubes completely. We have still many months to go, lots of goals to achieve before this is possible. But our GI and I are sure that Cameron is fast tracking it and will be completely formula free in about a month. Then we will start weening him off his reflux medicines and eventually the Periactin, so that Cameron will be completely medicine free for the first time in his entire life. Evan will take longer, but then he's always been our Lotto baby and surprises us with amazing ways. I know not to underestimate my little dragon Evan. He's a feisty kid and both the GI and I feel that he's ready to take on the eating challenge and we expect that he will be formula free by the first of the New Year 2011. Their feeding tubes will not come out for at least 3 to 6 months after they are formula and medicine weened (I am going to fight with our regular GI to follow our feeding clinic's tube removal protocols rather than her more aggressive approach), which would make this one of the BEST birthday presents that the boys and I could ever have.

I think I need to go lay down now. Here's some pictures from the last couple of very busy weeks.

Chillin' at Clark's Farm with our buddy Brendan. It was a cold and windy day!

We had a great time at Uncle Chris's house with our cousins Timmy and Lucy. They had a bonfire, pumpkin carving, and our favorite thing - a hay ride!! Cameron was in love with Uncle Chris and his orange tractor, while Evan was giddy to be ridding around in the hay howling at the moon with our buddies Julian and Teirnan and their parents Ray and Jenny. Such a fun night.

And then fall happened and the boys were reintroduced to leaves. And it was good.

Had a blast at ZooBoo and really loving our zoo membership. We'll definitely be renewing that membership every year. Thanks again to Ray and Jenny for that, we really are loving the zoo!!

Thanks again and again to Auntie Te and Uncle Tim for our flash cards. Evan is a teensy weensy bit obsessed with them to the point of risking life and limb climbing on top of the back of our "Thinking Chair" to reach them at the crack of dawn every. single. day.

A Moment of Silence for Christophe Hissette

2010-10-21T09:18:00.000-04:00

My cousin Christophe was a kick ass racer. I am so proud of him. I love him and miss him and think of him all the time.

http://www.dubaiautodrome.com/tracktalk/2010/10/christophe-hissette-to-be-honoured-at-kartdrome-24-hours/

A Hollow Leg Day

2010-10-19T22:29:00.000-04:00

Cameron:
Breakfast -
5oz of whole milk
4oz of yogurt

Morning Snack -
6 goldfish crackers
4oz of juice (watered down)

Lunch -
6oz of juice (watered down)
3 cheese puff curls (13 calories each!!)
3 pretzel sticks
4oz of stage 2 puree

Afternoon Snack -
2oz of water
4 pretzel sticks

Dinner -
5oz of whole milk
4oz of stage 2 puree
Self-fed 1 1/2 table spoon of diced macaroni & cheese (solid just like Mommy eats)
Self-fed 1 teaspoon of carrots steamed in beef stew

Evan:
Breakfast -

5oz of whole milk
3oz of yogurt

Morning Snack -

2oz of juice (watered down)

Lunch -
6+oz of juice (watered down)
licked 1 cheese puff curls to a soggy pulp
3oz of stage 2 puree

Afternoon Snack -
2oz of water

Dinner -
5oz of whole milk
2.5oz of stage 2 puree
Self-fed and spit out several pieces of solid diced macaroni & cheese without freaking out

Not too shabby. Why is this so remarkable? Because all of the afternoon food was consumed in under 30minutes and was feed to the boys by their therapists with no involvement from me or Granny Cathy. For the first time ever the boys HAPPILY let someone other than us and the feeding clinic staff feed them and consumed their full meal plus extra all on their own direction. As my good friends Trish & Becky would say, it's been kind of a hollow leg day.

Can there be a snowball effect without snow?

2010-10-17T21:53:00.000-04:00

At my last post I was talking about what a nightmare the first dose of Periactin was. Well... heh, heh, heh... Yeah, that was just the tip of the iceberg.

So the next day, Thursday, the boys ate considerably more food that usual and they were slightly better behaved but very tired. Then that night immediately after bathtime Evan threw up twice on an empty stomach with no warning and not caused by any gag trigger and spiked a fever of 102. He threw up all night long and then was lethargic all Friday. By Saturday we went into the pediatrician because we found white sores on the inside of his bottom lip. Turns out they were on the back of his throat too and that it was a virus likely similar to that of Hand Food and Mouth. The pediatrician said that if Cameron was not exhibiting signs then he should be okay to continue his normal activities which was great. Cameron, meanwhile, had been eating more and more and more food. He wasn't able to go more than an hour or two without asking for food and telling me he was hungry or thirsty. Sunday night Cameron ate almost a half of a hot dog, 12 goldfish crackers, and 3oz of a lumpy stage 3 puree, but he spiked a fever at dinner and we knew that he'd had it too. Vomit everywhere, all night long, and obviously we had to discontinue giving the Periactin because the sores in their mouths hurt so badly they wouldn't even drink more than a sip of water. And then by Monday my husband had it too. Everyone seems to have recovered for the most part by this weekend but we're all still quite tired.

We started back up on the Periactin and the toddler tantrum that came with our first dose the week before happened again, but now I was prepared for it. The volume and desire to eat is not what it could be because they are still getting back in the grove but by tonight they are eating better, just not fantastic. Oh, and Evan stopped vomiting on Tuesday, Cameron stopped vomiting on Wednesday, but our five day streak of no vomit ended tonight with a puke at dinner and then again during the evening bolus from Evan. *sigh* It was soooo very nice while it lasted.

To try and shake the blues we had from this illness we decided to visit Homestead Gardens for their fall festival. It was great because it's so beautiful there and there's lots to see and do, and we got there early enough that there was almost no customers yet. The trip was cut very abruptly when Evan tripped stepping up onto a platform to play with one of those coin operated toddler amusement rides, you know, the kind just like outside the grocery store that they sit in and you put in a quarter and the thing rocks and makes car or choo-choo noises. He tripped forward and smacked his forehead right on a corner of the base of one of the rides. His head started gushing lots of blood from the half inch slice. We left and took him to urgent care because it was clear that the gushing vertical slit was not going to stay closed enough to heal on its own without sutures. My poor brave boy ended up with two stitches (actually the nurse put in three but had to take one out) and some surgical glue to keep it shut tight. He was very brave and was acting just fine while we waited for the trauma nurses to get around to treating his cut, but was obviously hysterically upset when they did the sutures. Now everyone will be able to tell the boys apart for the rest of their lives.

Evan ran through the maze one more time before making a bee line back to the yellow race car ride, which is where he tripped on the platform and got this nasty gash.

Believe it or not, he was actually in a pretty okay mood in the urgent care center and slept 20minutes in my arms while waiting for his stitches and then was up until 7pm! The next day was business as usual...

We love wearing our sunglasses now. All the cool kids do it!

I think the stitches coordinate with the hockey shirt, don't you??

1st Dose of Periactin = Toddler Hell

2010-10-06T14:01:00.000-04:00

Great night last night, no puke and no one woke up in the middle of the night. This morning the boys slept in until 7am (angels singing from the heavens) and were in fantastic moods. That is until I gave the boys the first dose of their Periactin. Holy hell was that a miserable morning. It took about an hour before the full effect of the medication presented itself. I was expecting sleepy kiddos, maybe a little cranky and whiney, even clingy. Hopefully a little hungry too. What we got were two tornadoes of misery and angst. Nothing made them happy, they trashed the playroom. They were much, MUCH more agressive with each other, became hysterical if one was being held but no the other. Refused to share my lap (not unusual) but instead of the usual protest and dirty looks at me there were complete meltdowns and fighting. And they pushed and shoved each other, something they never do, and threw things across the room with anger and all around threw the most humongous joint temper tantrum I have ever seen.

I bailed on the idea of going to story time because it was clear that this would be a huge mistake. So my mother and I decided we'd talk a walk around the neighborhood with the boys in their wagon. Cameron threw a furious fit because I put Evan's shoes on first, while Evan was furious that I put shoes on him at all. And once I had Cameron in my lap to put his shoes on he became a madman because I was putting the right shoe on the right foot, and he wanted the left shoe on the right foot. The whole 20 minute ride/walk around the neighborhood was completed with sullen and sour faced toddlers sitting in stony silence the whole time, you'd swear they'd just had a screaming match but were now refusing to talk to each other or me or their Granny.

They did NOT eat well at all during breakfast and lunch. They are NOT drinking fluids well either. Now they are napping but Cameron keeps waking up at the slightest noise and screams bloody murder for a few minutes until he finally settles down and goes back to sleep. It's been a very ugly day. I think tomorrow I will cut the dose in half before giving it to them.

Evan & the Sit n' Spin

2010-10-05T20:44:00.000-04:00

Cameron & the Sit n' Spin

2010-10-05T20:39:00.000-04:00

Periactin & the Sit n' Spin

2010-10-05T17:19:00.000-04:00

We had yet another follow up with our regular GI (the one from U of MD and not affiliated with Mt. Washington Pediatric Hospital Feeding Day Program) today to make sure that our very slow weaning of formula is not impacting the boys negatively. We have been giving the boys only 500mls of formula per day, down from the approximately 700mls they used to get. The decrease in formula through the pump is in hopes that they will be hungrier and want to eat and drink more by mouth. This seems to have worked because up until a week and a half ago we saw some great consistency and improvement in the volume of foods and drinks they consumed by mouth. The boys were regularly consuming about 3 to 4 ounces of purees and 5oz of milk or juice or water per meal.

But then about a week and a half ago it all tanked back down to fighting to get two ounces of puree and three of milk each meal. They both started puking at night again, even puking three times in a row at the same time on Thursday night. Good times.

The GI was expecting at this appointment to see that the boys would have lost some weight in the last 4 weeks but they actually have gained a little bit with Evan weighing 26lbs and Cameron weighing 29lbs. This is good news because she feels that they boys need a little help with eating and we don't want to take away calories from their formula unless they're gaining tons of weight, which they are not. To do this she's prescribing a medicine called Periactin (also called Cyproheptadine in the generic form). Periactin is actually an antihistamine that when given in small doses has for our purposes a convenient side effect of causing hunger. So it is another drug like Erythromaicine which is an antibiotic the boys were on that given in small doses increases stomach motility/digestion, this Periactin makes you want to eat.

There are side effects to this medication, but nothing really scary. The most common problem with this medication is that over time the body begins to tolerate the small doses and suddenly without warning the medication stops having its desired effect. So for this reason we will start giving the medicine two times a day for 4 weeks and then stop giving it for one week. If this is too long a time frame and we see their appetite begin to wane again then another option is to give it five days a week (Mon - Fri) and none two days a week (Sat and Sun). Also, this medication is an anti-histamine so the next issue is that it makes you very sleepy. If this happens and it causes issues during the day/morning hours then we just drop the morning dosage or give it right before nap time (hallelujah!). This is a side effect that a very sleep deprived Mommy and Daddy will like. Lastly, and by far the most severe but also the most rare side effect, this medication has the tendency to decrease urine output. Luckily the solution is to stop giving the Periactin and the problem stops within 24hrs.

We'll be starting the Periactin tomorrow morning. I hope this is the trick to get us to the next stage of eating. I'm just as excited to try this medication if it means more uninterrupted sleep at night for all of us, as well as increased interest in eating by the boys.

If you or your little one has been on Periactin, what was your experience like?

Now some pictures for you to oooh and aaah over. ;-)

Witnessed in the Playroom

2010-10-05T14:33:00.000-04:00

As witnessed by Granny Cathy today.

Cameron and Evan standing at the open playroom window looking out at the yard and drinking from sippy cups of water. Cameron looks at Evan's water and says "Share!". Evan hands over his cup of water and takes Cameron's cup. They continue to stand at the open window drinking their cups of water.

Relaxing 50 minutes

2010-09-30T18:25:00.000-04:00

I am sitting in the lobby of the veterinarian's office. I am with Chewie. Pleasant quiet music is playing. There is a tropical fish tank. The light is dimmed. We are waiting for his ear to be looked at. It's just me and my calm 110lb furry chicken. It is peaceful and relaxing here. I might spend the night. Chewie does not plan on joining me.

I am not going to survive the Terrible 3's.

2010-09-28T22:54:00.000-04:00

Recently I've been noticing more resistance from Cameron when I want or need him to do things. It's usually over things like holding my hand when walking in the parking lot, or putting him in his high chair for meals, or for wanting something that is not safe or appropriate for him to have in his mischievous little hands. They are short little outbursts with lots of pulling or tugging or pushing by Cameron and a fair bit of maniacal giggling because he knows what he's doing is not right. But it's always quickly resolved or he's easily distracted by something and forgets what he was trying to accomplish.

Tonight however was probably his very first full fledged tantrum. We were sitting in the kitchen, my husband and me sitting on opposite sides of the kitchen table with a boy in a high chair in front of us, trying to feed them dinner. Cameron had been sucking on a Pepperidge Farm Goldfish pretzel. He had been using the pretzel as a diversionary tactic to avoid taking the spoons of food that I was feeding him, a common trick the boys both use often. I took the pretzel away and put it on the table next to me. Instantly Cameron screamed "Want goldfish! My goldfish! More goldfish! No! No! No!" at the top of his lungs while kicking his chair and banging on the tray.

Yes, I caved. Instantly. Like a house of cards in a strong breeze. I immediately handed back that goldfish. And he bit a piece off and chewed it up and swallowed. And then he did it again. Very tiny bites, chewed 36 times each before swallowing. Until that pretzel was gone. Luckily between every two bites he let me feed him a spoonful of his puree and he managed to eat all 3oz of it before our 30minutes was up. *sigh*

It's not like that was the end of the world for me to let him just finish the pretzel, but if I let him just focus on the pretzel then it takes away from the very limited amount of time I have to keep him in the chair (no more than 30 to 40 minutes max) to get him to consume measurable sustainable calories including his milk. The whole meltdown only took maybe 6 seconds? With a lot of hands down holding and coercion and Blues Clues on the television it took all 30 minutes to eat one goldfish pretzel and 3 oz of puree.

I could have just said "Take three bites and then you can have it back" as part of the reward for eating but I didn't. The thought didn't even cross my mind until the moment had already happened and I'd already caved and handed back the pretzel. Typing this now I'm thinking of a dozen ways to have changed the outcome of that scenario. I must really be off my game, but the new begging and whinging behavior, the suddenness of the outburst, the conviction, the screaming with near tears really caught me off guard.

If that's a temper tantrum indicative of my future, and I'm guessing that was super mild, I am so, so, so very screwed.

Guggling Kareoke

2010-09-24T22:38:00.000-04:00

At bedtime tonight we had some great entertainment to burn off the last minute pre-bedtime giggles. Drew was juggling bouncy balls which thrilled Evan. I'm quite sure that had he been wearing big boy undies instead of a diaper he would have peed himself silly while screaming "Guggling! Daddy Guggling!" Meanwhile Cameron would bring to me his Fisher Price radio,look at the buttons with a serious expression and say "Howbout...." (long pause) "Itsy Bitsy Spider song?! Here comes!" and then press the button to play the Itsy Bitsy Spider song. At this point he'd pick up a toy microphone and sing the song into it. We did all five songs on the radio this way, the whole family singing along while Daddy and Evan "guggled". So much fun.

I Plug You In, Mommy.

2010-09-23T21:17:00.000-04:00

This morning Cameron grabbed a long thin scrap of paper we'd been playing with, lifted up my shirt and said "I plug you in, Mommy." And then he pretended to plug his paper feeding tube into my imaginary G tube mickey button. He did have a moment's pause looking around for my button and a quizzical look on his face when he didn't find what he knows he and his brother have on their bellies. It was a very quick moment and then he moved on to something else completely forgetting what just happened. It was our first encounter that he realized that I am different that him.

I took the boys to the eye doctor for their 2 year exam and it went amazingly better than it did the last time we were there when they were about 8mos old. They walked in on their own two feet, they were able to interact and show the doctor their ninja swatting skills every time he tried to put his hands near their face. I had to explain that this is because of their oral aversion. It was very interesting to see his ability to use thousands of happy meal toys (quite an impressive collection I might add, many were so cool I was playing with them for fun) just like the therapists do in the feeding program to get the boys to take bites. The doctor had never heard of feeding therapy like this and so we swapped techniques on toddler distraction for a few seconds while the boys tried their best to destroy his office. I love this eye doctor because not only has he seen the boys since they were 1lb and 2lbs and only a week old, he's just a really nice man who understands how kids, especially toddlers, work. If you ever need an awesome Pediatric Ophthalmology specialist send me your email to Taylo2Babies@gmail.com and I'll forward you his information.

The results of the examination are that at the moment we are officially free and clear of two of the primary prematurity eye problems, ROP (Retinopathy of Prematurity) and Strabismus (cross-eyed or wall-eyed). But we are definitely on track for the third and less worrisome of the three, nearsightedness. The boys had to have their eyes dilated and the exam confirmed that they are both slightly near sighted. (And as usual with almost all their medical stats, with the exception of size and weight, they are near sighted to the exact same degree.) Sure as hell could of fooled me, they seem to see EVERYTHING no matter how far or how close it may be. The doctor said that they are entering the "stabilizing stage" of child growth where their eyes will not change much for a long period of time. But he did say that they will need to come back in two years or right before they start pre-school/kindergarten so that if we need to get glasses that they can get used to wearing them before classes start. So it seems that it's likely, though not guaranteed, that they will both need glasses by the time they go to school.

This is not really a big deal at all. Everyone in our family wears glasses, so it seems inevitable that this would happen. I am just surprised that they might need glasses much earlier than I expected.

It's just not poor Evan's day!

2010-09-21T21:53:00.000-04:00

Every parent has those moments when they go in to check on their sleeping angels before going to bed only to smell something unpleasant and realize they need to wake the child and do a quick dirty diaper change. I just had a moment like this but it's not like what you'd imagine it to be.

Not 30 seconds after publishing my last post about not jiggling the babies when I hear a little cough from Evan over the monitor. I think, well it's almost the end of his feeding pump bolus right around the time he would puke in his sleep, so I better get up there and turn the pump off and give him a little break. I get in the room and he's sleeping peacefully. But I smell a very distinctive smell. Not the smell of poop. No, that would be easy. It's the smell of formula. Poor Evan is snoring away peacefully while laying in an enormous puddle of very cold formula. His diaper is soaked, jammies are soaked, blanket is soaked, the pillow is soaked, even the waterproof sheeting is soaked in ice pack chilled formula.

Despite having the lovely and wonderful sanity saving AMT clamp to keep the feeding tube connected to the adapter in his belly so that the tube won't pop out when tugged thus leaking formula all the time, we can't do a whole lot about the tiny medicine syringe port on the side of the feeding tube adapter. (see the tiny little spout on the side of the feeding tube in the picture above) From time to time this little button port will pop open and formula and stomach fluids leak everywhere until you stop it. I have no idea how much formula he did not get in his belly, but from the size of the mess I'm guessing it was pretty much his entire overnight feeding. Grrrr....

I just had to wake Evan up, strip him down, wash as much of the formula off as possible (elemental based enteral feeding formulas are a nasty concoction that are thick and sticky and smell very strongly), get him dressed, strip his bed down and replace all the bedding. At least he was too tired to wake up completely and so his crying stopped once I put him back down on a fresh pillow. Poor kid, it's just not his day.

Nobody Jiggle the Babies!

2010-09-21T21:14:00.000-04:00

Today I blogged about how if I say it out loud that the boys haven't puked in a while, they go and puke within 24hrs. But there is always a silver lining to every cloud right? Here's the silver lining from today's earlier post.

Evan has been very agressively trying to make himself throw up during meals, regardless of what we feed him, how fast or slow we try to feed him, or whether it's a solid (puree food) or liquid (milk, juice, water). He gags and retches at all the foods we feed him (nothing new or different or strong), and after the puke at nap time I was pretty certain that we were going to be seeing more puke with his increased attempts to make himself vomit during meals. And when I say increased attempts at puking I mean that two weeks ago he never attempted this kind of behavior, but as of this week he tries between two and eight times a meal to make himself sick. I will try to video tape his new behavior tomorrow during breakfast to show you how subtle this kid works. But our therapists from today's session witnessed it and both confirmed it was behavioral and not an illness or reflux.

So back to the silver lining part. Tonight Evan drank EIGHT ounces of whole milk and ate FOUR ounces of stage 2 lentils and rice puree. And then he threw up. But that's okay, he finished off another ounce of milk after he puked. That's a total of THIRTEEN ounces of heavy liquids/purees in his tiny belly. And the puke was likely triggered by his self induced gagging and retching as well as the fact that his belly has never been that full in his entire life.

And not to be too outdone by his little brother, Cameron ate three and a half ounces of sweet corn casserole stage 2 puree and SIX ounces of whole milk. That's more in one sitting than he's ever consumed in his life either. And luckily he did not throw it up.

We have a serious joke in our house. Don't jiggle the babies.

It Never Fails

2010-09-21T14:22:00.000-04:00

Every time we have a series of days and nights without any episodes of vomiting for both boys I get excited and relieved. That is until someone mentions or asks how the vomiting goes and I have to tell them the truth. If it's someone who doesn't really talk to us very often I can just say "Oh, the same old same old one day at a time." and things go okay because that's how we live. But it never ever fails that when someone close to us, especially people very involved with the boys from a feeding and medical standpoint, ask how things are going with the vomiting and I really do have to tell them the details that the reprieve ends. Like clockwork. A switch is flipped and the flood gates open. We've gone almost a week without either of the boys vomiting in their sleep. Today at our feeding therapy session I was asked how things were going and I had to tell the truth because the therapists and doctors need to know, and inside as I'm telling her the latest improved trend on vomit in our house I can just feel the good peaceful naps and nights slipping away. Sure enough, at nap time today Evan threw up. Nothing out of the ordinary for us, but it was almost a full week of no vomit which has now officially ended. Back to the drawing board. *sigh*

Feeding Clinic 3mos Follow Up

2010-09-18T12:33:00.002-04:00

Thursday we had our three month post-discharge follow up with our feeding teams at the Mt. Washington Pediatric Hospital Feeding Day Program. It went better than I expected from a process standpoint. As any mom who's taken more than one kid to a doctor's appointment knows these kinds of appointments can be taxing from a logistics and behavioral and anxiety standpoint. But in rare form the boys were totally awesome, no tears at all, well behaved and generally happy despite that they were super tired and hungry. They did the physical examination and then we met with the majority of our feeding team. This includes one Nurse Practitioner from GI, one psychologist (because we'd just seen the Director of psychology the week before and he'd had another kid he needed to visit with at our appointment), one speech therapist, and one occupational therapist. Our GI doctor who is the director for the clinic and the clinic manager could not be there as they had some other things going on that day.

It was nice to visit with the group, I really like the people we are working with, and so do the boys because they were friendly and very talkative. So much so that the whole team was really impressed with the recent developments in their language and expressive skill and how comfortable the boys were to be around the team members in a close confined group setting.

Overall the boys are doing great, though not gangbusters fast track to our other GI doctor's (we actually have two GI doctors working on the boys) six month goal to have the feeding tubes removed. I'll talk more about that in a minute.

Evan's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. per report, continues to refuse all higher textures
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses)

Nutrition Per CDC Growthchart:
Weight - 11.5kg(23rd % for age) - *He was 10.9kg at the last day of the program, this is an average weight gain of about 6.5grams per day in the past 92 days. Impressive considering he got two very dangerous high fever viruses during these last couple of months.
Height - 85.5cm (7th % for age)
Weight/height - 66th%
Evan gets 1300 calories per day, the bulk of which still come from the formula through his feeding tube. But his goal was to maintain a weight gain for between 5 and 10grams per day, so we're all very happy about this, especially since we've been cutting back on the amount of formula he's been getting by 175mls to stimulate his hunger drive and willingness to eat by mouth. Seems to be working.

I'm very excited about this last weight to height ratio because when we started the program he was barely on the charts at all. It's probable that he'll never be the same weight or height as his brother, but then they are different people and started life in very different ways medically speaking. I'm glad that they get to be so obviously different since so many people, especially people who don't really know them well always seem to lump them together as one entity.

Evan still only eats volume from a spoon or straw. He will touch, kiss and lick pretty much any food you give him but if you ask him to touch the food to his teeth or to bite he will not try, and it is clear that he knows what you are asking him to do. We know he can do it, we know he has done it several times in the past, but convincing him to replicate those bites is darn near impossible.

Cameron
Cameron's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. Accepts higher textures by mouth (goldfish, crackers, etc) but actual processing and swallowing is minimal
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses but also because of behaviors)

Nutrition Per CDC Growthchart:
Weight - 12.8kg (61st % for age)
Height - 90.5cm (76th% for age)
Weight/height - 46th %

Again, like Evan, Cameron is getting 1300 calories per day the majority of which is by the formula in his feeding pump. His weight at clinic discharge was 12.25kg which is an average weight gain of 6 grams per day over 92 days meeting the goal of 5 to 10grams per day. And since we've also been cutting Cam's formula back 175mls to stimulate hunger I guess it's working for him too.

Cameron is much more comfortable with biting and is starting to use his back molars for chewing, but we can thank teething his two year molars for that. He takes teeny tiny tweezer pinch sized bites of foods, and will only eat goldfish crackers if you break the fish up in to small pieces nothing bigger than the size of my pinky finger nail. And his very interested in our food, to the detriment of regular eating of his purees so that we can not present him with crunchy foods or eat our food in front of him or he will refuse to eat his purees. He will then only take minuscule bites and then chew on them forever and avoid eating the volume of food that he can consume via the purees. So it's not as simple as just offering him whatever is on our plate. He just doesn't eat enough to be measurable let alone sustain life.

As I've mentioned before our regular GI Dr. Safta, the doctor who put in the initial GJ tubes and later the G tubes, wants to have the feeding tubes removed in six months. She feels that if the boys are eating enough by mouth to maintain their weight and show some growth that it's okay to remove the tubes. Dr. Katz from the feeding program does not feel that's enough and I agree. His rules are that the child must be completely mouth fed including all medicines for a minimum of six months, that they show they can gain an average of at least 4 to 11 grams of weight per day for six months, that they must be able to go six months without any illnesses greater than a general head cold and not need the feeding tube to supplement their nutrition or fluids in any way during any illness, and that the tubes will never ever come out in the winter months because the risk of illness is much higher and if the child gets sick enough to need help from a feeding tube we'd be back at square one with the whole process including another surgery to put the tube back in. Based on Dr. Katz rules for removing the boys feeding tubes (which is no where near being able to call them "cured" of their eating disorder) there is no chance in hell that we'll be removing them in six months. I'm okay with that, just anxious beyond words for it to happen.

Kipper Dog Dancing

2010-09-16T20:31:00.003-04:00

Cameron loves a British cartoon called Kipper which he likes to call "Kipper Dog". It's about a brown and white dog and his friends and is really sweet and what I would call a calm cartoon since it's all soft spoken voiceovers with no shouting and screaming (like Dora or Diego) and the art is very simple. The theme music for the cartoon is a pleasant little jazz song. Cameron was apparently in the mood for some Kipper Dog music to dance to and found some to play on his toy piano. Problem was that he couldn't find the long version of the song, only the short version. Evan is running around and around on the slide having a great old time but not really caring about the music too much. I caught it all on video.

Pwweeeeese!

2010-09-15T21:46:00.002-04:00

Words to bring tears to my eyes. For dinner tonight Drew was eating leftover sloppy joes. We had given a small piece of hamburger bun with sloppy joe sauce on it last night to Cameron and he'd nibbled it a few times. Tonight when he took one look at Drew's plate he screamed, "Cheeseburger Daddy! Pweeeeese! Pweeese Daddy more cheeseburger? Cah-men more cheeseburger pweese."

You bet we gave him a piece of sloppy joe burger.

Baltimore Zoo

2010-09-13T21:38:00.001-04:00

The boys are so observant and expressive now and are very aware of a lot going on around them. And they are getting so good at telling me what they want. Evan is now telling me "One too!" when he wants something, regardless of whether or not anyone also has that same thing. He just knows that he wants one of whatever it is, a toy, glass of water, a cookie, a ride on a scooter, too.

Cameron is fascinated by skiing now, much to his father's joy. He demonstrated his interest in the sport by grabbing the purple fly swatter off the hood by our trash can, placing it on the floor, and stepping on it sliding his foot forward saying "Cahmen skiing! Swoosh!"

In another moment of expressive demands, the boys have been using a new step stool to get to the bathroom sink for washing their hands. We typically keep that door closed because we just don't need to have them swimming in the toilet and are loathe to put a toilet seat lock on just yet. Cameron was trying to get in the bathroom and told his Granny "You wash hands? Wash hands Granny." When she said no, it's not time to wash our hands he replied, "I sad." It was only a matter of 24hrs and a single episode of Play With Me Sesame where Big Bird talks about opening a door that he'd figured out how to turn door knobs and open any of the doors in the house. Luckily the front door is a little heavy for him at the moment, but it looks like we're going to be forced to step up our baby proofing.

On the feeding front we're making very small strides in volume so the boys are getting back on track to eating two ounces of any stage 2 puree and consuming up to 4 and 5oz of milk, but very inconsistently. Occasionally Cameron will finish his 4oz of milk or 3oz of "monkey juice" (Danimals yogurt smoothie drink with a monkey on the side) and tell me "Milk all gone." and on one occasion he asked for more milk. I happily obliged but he didn't follow through with drinking the rest of the extra ounce I offered.

This weekend we made a trip to the Baltimore Zoo and as usual we had a fabulous time, despite poor Drew's allergies making him feel horrible. The boys walked the majority of the way around the zoo, but the stroller was still a necessity. They tire easily and if we want to get someplace pretty quickly the stroller is the way to go, especially since we have to carry around their feeding pumps and feeding toys and a double loaded diaper bag. The Baltimore Zoo is really nice, especially since the Whistle Stop eating area has been remodeled and there's lots of shaded areas to sit to eat. There are no high chairs or booster seats or air conditioned indoor area to eat, which poses a major challenge for us because our boys are so particular about eating. They can't be relied upon to sit still so we can feed them. They would run in a heartbeat so we have to have a booster seat to strap them down to or a high chair like the kind you see in a restaurant. And it's much nicer to feed them in a chair that's not their stroller because it's a real pain in the butt to keep the stroller clean and their posture is not the best for eating. Air conditioning wasn't necessary on a gorgeous day like today when the weather was a perfect breezy 77 degrees. But on hotter more typically humid Baltimore-style days in the summer months air conditioning means the difference between getting the boys to eat food and completely refusing necessary calories and fluids because they are already uncomfortable.

But the Baltimore Zoo is close to all our friends, is on the way to Mt. Washington Peds Hospital so I can take the boys there before or after appointments if there's time, and the parking is free. There's also a great playground jungle gym climber there which now that the boys are better at climbing up and hanging by their hands they can really enjoy. I also like that even on a slow day the volunteer staff were everywhere with animals in their hands or on their arms to show to the kids and they were very approachable and all of them were very understanding of a two year old's capacity for understanding and attention span.

Luckily today was a good eating day and the boys did well and it was really pleasant. There was hardly anyone at the zoo today and that was great for us. We didn't get to see too much because the animals all seemed pretty snoozy in their houses and the boys got pretty exhausted early due to walking more than usual. We only saw the polar bears, arctic fox and snowy owl, a couple of ravens, two hawks, a gecko, a turtle and a kookaburra bird that sang his special song just for us.

The boys are getting excellent at holding our hands and not letting go. But they are completely unreliable about staying put or trying to wander off or drag us in two different directions at the same time. And they don't really know how to walk a straight line, each always pulling and leaning to one side which either trips me up or makes one of the two fall down. But we're getting to the point where probably going to be walking most everywhere with them holding our hands in the next six months. Well, that or whenever they finally get that they are supposed to follow me no matter what and not wander off without looking where they are going.

Here's some pics from this weekend.

Old Navy has some of the best jammies this season. My little astronauts!

Cameron's got some big shoes to fill.

My little Pirates! The already know how to the pirate walk and talk. Aaarrrggg!

Here's some of the animals we saw at the zoo.

We visited the Kids Petting Zone to see the goats. Evan was mesmerized with how the goats were eating from the hanging bale of hay. He was so intrigued that he decided that he should see what was so tasty about hay and leaned in to sample a bite himself. At the last minute he changed his mind, but it was fun watching him think about what the goats were doing and see the little gears in his head turning trying to decide if this was something he should give a try.

Things Heard In My House

2010-09-04T08:42:00.001-04:00

Granny Cathy: Laurie, what are we going to get your brother for his birthday this year?!

Me: I don't know Mom, I can never think of anything. Have you asked Donna for ideas yet?

Granny Cathy: No, I need to call her.

Drew (aka. Smartass Husband): How about a gift certificate to the Bunny Ranch? That's always good.

Cameron: Good idea!

Me: ::sigh, stare evil eyes and shake my head in exasperation at my husband::

(I have borrowed this post topic from my friend Nicole. Thanks, Nicole. Good idea!)

Interractive and Imaginitive

2010-09-03T22:47:00.000-04:00

The boys are really starting to become little people with more expressions and language. Thanks to our vacation in the Outer Banks Evan is now much more vocal and attempting more words, though they are still mispronounced and most of the time are missing the first and or last letter's pronunciation. But the key is that now he's trying to make himself heard and will pay attention to my mouth and imitate when I pronounce words, where before he was much more timid and soft spoken and gentle with his language and did not repeat or imitate at all. Both boys love to sings songs and are now singing along with us or the television which is so much fun. And this has led to a much more interactive and imaginative form of play between the boys.

They have not yet demonstrated any twin-speak, that secret language that infant multiples sometimes have that no one else can figure out. Instead they are playing chase or "I'm going to get you", playing peek-a-boo with each other, playing with blocks together, crashing cars together, climbing on the windowsill together, taking turns going down the slide head first.

The boys are playing more imaginatively with their toys too. At times throughout the day they will just wander off with a toy and sit quietly and play with that toy and I watch and listen. Evan's favorite thing to do right now is to build towers (only for Cameron to charge across the room and knock it down, which makes Evan laugh). It's taken a long time with lots of my building the towers and his crashing them to find that there's fun in building them as well as knocking them down. Cameron has not shown interest in building just yet but enjoys the crashing towers quite a lot. Cameron's favorite thing to do now is to play with his Little People action figures in their firetruck, dump truck, or pink airplane. He walks the people on and off the vehicle, flies them around, sprays water, has conversations about what is happening to the people.

Today I noticed a new social and developmental skill emerging which is fun, especially since both boys are struggling with a head cold that is making them clingy and more tired and they have been puking more in their sleep. Whenever they are sick I see less language and less developmental skills improvements, which is true for anyone who is sick and feels like crap but the delay is more pronounced for kids who have a chronic illness. If you were vomiting in your sleep through out the night for two years straight you'd feel pretty crappy and not perform at your best all the time too.

Today I noticed that the boys were very interested in lining things up to make a choo choo train. Cars, Geotrax train parts without the track, and little Matchbox/Hotwheels cars. We recently scored a ton of new toys from my older niece and nephew which included about 20 cars. I found that Cameron was "parking" the cars on the keys to their toy piano using the shorter "black/purple" piano keys as the lines in the parking lot. Evan was lining the cars up as though he was parking them on his parking garage and then racing and crashing them in a traffic jam on the ramp. This kind of play is a great sign of more fun things to come because they have been delayed in these areas for a little while and we have known it would come around but it is so much fun to see their own little selves finally coming out.

Almost 72 hrs without vomit

2010-08-31T17:25:00.000-04:00

Well, at least for Cameron anyway. Evan still pukes once a day. But we've recently had bouts of vomit free days for Cameron and he sleeps really well during naps and at night, though he still gets up at 6am on the dot. That is until today when Evan spent 40min of nap time bouncing around and singing while Cam tried to sleep. His bouncing and singing woke Cam up and he got so upset about being woken up (just like his Mommy) that he sobbed so hard that he puked, and it was bad. And he was so upset that Evan wouldn't stop singing that he puked more but this time it came out his nose. Then he was REALLY angry. I settled him down after much coaxing and went to lay Evan down one. more. time. and changed Evan's diaper and before I could finish changing him Evan fell asleep. Within 5min of Evan falling asleep Cameron was bouncing around in his crib. I think it will be an early bedtime tonight.

This afternoon Cameron kept walking around and saying "Come on Travis. Hurry Travis. Travis over 'dere!" I asked Cameron who Travis was and he replied "He friend." I have no idea where he got the name Travis from. I guess he has an imaginary friend now?

Trip to the National Zoo

2010-08-28T21:42:00.000-04:00

We have been to the National Zoo before, but always with a very large group. Large groups make it difficult to see many things because it's so difficult to stay together. We decided that this beautiful weekend we would make another trip and try to see parts of this zoo that we've never made it to before. And we did hit the jackpot on several occasions even though some of the larger exhibits we want to see are closed for remodeling. The key to today's awesome sightings was pure luck, an early arrival, and a cool summer morning. I think of all the exhibits that was the most fun for us it was the orangutans in the Great Ape house. We were the first ones to pull up to the enormous window and three of the beautiful orange beasts hopped right up in front of the boys in their stroller. I can't wait to go back to check out their new elephant exhibit after it opens next week. And we're planning on taking the boys back to the Baltimore zoo a whole lot this fall because we have an awesome season pass there and you can feed the giraffes yourself, which I know they would love.

I'm super excited with some of these pictures because I took them all with my awesome new camera and they came out great. The zoom is a amazing. If I didn't know how far away I was standing when I got some of these shots I'd swear that I was standing not 10 feet away out in the wild near these animals. I am dying to take a class so I can get myself out of the Auto mode on the camera. I play around with the other settings but what I really need is someone experienced to show me some things. Such a fun day!

We got to run into our preemie buddy Brendan at the toddler play zone. It was good to see them even if it was only for a few minutes. Brendan was playing shy with me and is still getting over his separation anxiety now that his dad is home and couldn't bear to be more than a few feet away from him.

One of Mom's Most Common Ponderings

2010-08-25T14:20:00.000-04:00

One of the most common things a mom, especially a first time mom, wonders about is how their child(ren) are developing. Most of the time it's a fleeting thing to think about, other times it's a concern, and for lots of parents it's an obsessive and justified ongoing worry. There are tons of really wonderful websites to check out, I have several posted in my list of Favorite Links to the right of my blog screen. But recently I learned of another one that is fabulous and just wanted to share to site. It's called Early Intervention Support.com and it is a site to help determine where your child is in their development and ways to help them grow and improve on the skills they need. And most importantly the site is about how to find services in your area that will meet your child's need. Most of the services you will find are through your state's Early Intervention program set up on all school systems and they are free if your child qualifies after a simple evaluation. Check it out.

http://www.earlyinterventionsupport.com/default.aspx

Tripple Dog Dare

2010-08-24T13:32:00.000-04:00

Today was probably the best GI appointment we've ever. No one melted down when their weight and height were checked, though there were some tears from Cameron at the blood pressure check. Then there were no tears when the doctor walked in, and she was even wearing her lab coat. Instead the doctor was greeted with the sight of both boys who pulled up their chairs and sat at the side of the examination table like they were sitting at a buffet table with a nice decorative paper runner tablecloth covered in their own crayon drawings. They each had a sippy of juice and were chowing down (or in Evan's case sucking the life out of) on goldfish crackers. A complete 180 from where we were when we started seeing our GI. The doctor got a good chuckle at this sight. Another reason why this visit was so phenomenal was that the boys were so contented to sit quietly on their chairs and EAT that my husband, the doctor and I were able to chat and hear each other without shouting and there was not even the tiniest hint of stress or anxiety from anyone in the room. A very big first for us all. And almost as easy as taking one child to the doctor.

Four weeks ago the GI had us cut back 75mls of formula that is fed through the pump to each of the boys. If that worked to stimulate more eating but not cause weight loss we were to decrease another 100mls after two weeks. This did work for Evan because within a week he'd started to eat all four ounce jars of some of his favorite stage two purees. It did not work as well for Cameron. Then Cameron got sick with what our pediatrician thought was a second case of Roseola which turned out to be some other kind of virus and naturally his desire and willingness to eat tanked considerably. Then one week after Cameron's fevers subsided Evan came down with a slightly worse form of the virus and obviously his eating went downhill then as well. And as all parents of feeding disorder kids know, getting them back to eating the way they were before being sick is like stirring a pot of cement until it hardens.

At the moment Cameron is at the 50% for weight to height for his adjusted age of 25.5 months and 25% for his actual age of 28mos. Because of this, even though he's not eating the volume his compliance is great and we'll be cutting the volume of formula he gets in the pump again by another 100mls. We just need to figure out how to get him to stop puckering his lips on every bite so that he consumes the food on his spoon rather than shoveling it off the back of the spoon, thus taking three times as long to eat the two ounces he was eating two months ago. Hopefully the change in his formula will make him more hungry and he'll be more eager to consume the volume. He is eating one to two broken goldfish crackers per meal and asks for them by name.

Evan is still at the 10% for weight to height for his adjusted age and 5% for his actual age. But since he didn't really gain any weight we're not making any changes to the volume of his formula, especially since it's only been a week since he had that virus. He is eating more volume already but it's taken a week of persistence to get him back to consuming two ounces instead of the four ounces he was starting to hit. He does not bite any crunchy foods but LOVES to suck a goldfish cracker to a soggy pulp. Once it's that soggy though he throws it away and asks for a new one or refuses to eat the soggy one. I do think that in another week or more we will see Evan eating more volume again and then once I see him doing this consistently I will go ahead and cut his formula back another 100mls again.

The last thing we discussed at the end of our appointment was the GI's new goal for us. To remove the feeding tubes from the boys stomachs permanently in six months. (I can not type this sentence out without getting teary eyed and have that funny tickle in the back of my throat fighting back the tears.) Do I think this is possible? Maybe. If the stars and planets align just right, if the moon could tilt it's axis just a little to the right, maybe. If the boys keep trending the way they have been and no one gets as sick as they have been this month then we might stay on target to meet this goal. Do I think it's likely? No, definitely not. Why am I getting teary eyed then? Because it feels like I can almost taste it. (Pun intended??) We're so very far from that goal, there are so many steps to eating to master before they can really remove the tubes. Evan needs to learn to bite into foods and chew them and swallow them. Cameron will have an easier time of it for sure since he can bite food, but he needs to learn to take bigger bites and swallow bigger pieces and that's the hardest part to teach.

I think that it will be at least another 9 months to a year and a half before the boys will consistently eat enough food and liquid by mouth to get the feeding tubes out. This is my prediction. And as all parents know, kids like to make us big fat liars. I offer that challenge to my children and dare them to prove they can do it sooner than that. I double dog, no wait, I quadruple dog dare Cameron and Evan to get their feeding tubes out in under 9 months! And if they do that I'll give them anything they want. Anything.

First Beach Vacation

2010-08-22T22:29:00.000-04:00

There were a lot of firsts this week. We took our first vacation in five years since our honeymoon. We took our first vacation as a family of four. Our first to the beach in the Outer Banks of North Carolina. It was a very rocky start since Evan came down with that wicked virus and managed to spike his fever to 106.1 at one point. Very touch and go, with almost two trips to the ER and nearly canceling the whole vacation. But we skipped the first three days and managed the fever with medicines and cool baths and things became better and by Monday the fever was gone and we were able to start our 7 hour drive to the beach house.

It was a fabulous time because we got a great house, had great friends staying with us who also had kids, and a short walk to a fabulous beach. Oh, and right next door was a beach gear rental shop, an ice cream shop, and a carry out food shop that is owned by Marylanders from our neck of the woods in Hunt Valley who sold crabby fries (fries with Old Bay seasoning and malt vinegar, a Maryland staple yum!) and Maryland style steamed crabs. What more could you ask for on a beach vacation?

The boys ate horribly the whole week. Evan because he was still recuperating from his illness and Cameron because I think he was just overwhelmed with all the changes to his environment from the new house, the five other kids around him, the four other adults, the wind and sun and sand and waves and swimming. The eating behaviors are horrible and nothing we tried worked. Their sleeping was horrible too either because someone puked per our typical reflux issues, or they were having trouble sleeping and having nightmares. So both Drew and I slept far worse than we usually do, making for not much of a relaxing vacation for us.

But it was super fun, and mostly because we got to spend time with our friends. It was nice to hang around other adults, chatting about grown up things, swapping stories about kids, sitting in silence and reading our books while the kids napped, taking a leisurely swim in the pool, napping, or stuffing yummy Dare Devil pizza and jalapeno poppers down our throats. We are already planning our trip next year, all we have to do is pick the week and we're ready to go. And next year's is sure to be more relaxing. It can only get easier traveling and vacationing with kids as they get older right?

Some things we learned about vacationing with toddlers:

Plan what you want to do the day before, try your best to stick to your schedule so you can actually get where you need to and not waste too much time in the process, and be prepared to scrap your plans at a moments notice. Even if it means that they get sick the day before you leave. Always check ahead and print out contact information and addresses for the local pediatrician and ER. It's just a part of life when you have kids.
If the trip typically takes you 6 hours to get somewhere, expect that it will now take you 8 to 9 hours to get there because of the kids. Yes, it's true. You will stop for breakfast. Then stop for a diaper change. Then another diaper change. Stop for lunch, but the kids need to run around in the play area for at least 20 minutes or it will be like trying to give a cat a bath when you go to put them in the car seat.
If you are vacationing with friends it's best that those friends have kids generally within the same age range because they are able to play with each other and entertain each other in short bursts. Plus, everyone staying with you will understand any disruptions to the necessary schedule, meals, sleeping arrangements, need to find potties quickly and having to make many stops. No one will get annoyed because they have been there, done that, and understand.
Take a very small baby pool to the beach so that you can put some water in it, the cheaper the better so you can throw it away or recycle it when you leave and not have to lug it back home at the end of the trip. Your toddler will thank you and you won't have a terrified baby clinging to you in fear every time you want to go dip your feet in to cool off. Most of the toddlers and infants we met were terrified of the waves and simply would not even put their toes in the water, but it was too hot not to find some way to dunk them and cool off. Having a pool under an umbrella is fun and cool and super convenient.
Swim socks or water shoes are perfect on the beach as well as in the pool. I especially love the swim socks from One Step Ahead because they have a nice thing neoprene foam padding on the bottom so that the heat of the sand doesn't burn their feet but they have full range of motion like as if they were barefoot.
Take painters tape, duct tape, and a water noodle with a hallow core with you. Use the painters tape to keep dresser drawers shut from prying fingers, duct tape to cover door knobs so that little fingers can't turn the lock on the knob and keep heavier items closed. Use smaller sections of the water noodle (sliced longways on one side) to keep doors from being slammed shut by kids by putting the piece of water noodle over the top of the door. You can do the same if there are sliding closet doors so the door won't smash fingers when it shuts.
Pick up aluminum foil at the dollar store. Use the foil sheets and the painters tape to cover the windows in whatever room you sleep in to work as room darkening shades. Works like a charm at nap time to block out all the beach time sun pouring in the windows.
If you are renting the place you are staying at check ahead of time to find out what baby gear they provide. Lots of places provide a high chair and a pack n' play portable crib. But most don't provide baby gates for stairs or have any baby proofing items like cabinet locks or door knob covers. You may want to find out if you need to bring these things with you. You can also ask if there is a store locally that you can rent these items from. They rent anything from baby gates and high chairs to full sized cribs and the cost per week is reasonable. You will want at least one baby gate at the top of every staircase for every floor that you have toddlers staying on.
If you are staying in a house that has a pool see if you can find out how much patio or deck space you have to work with between the fence and the ledge of the pool. Most pools, especially the ones in the Outer Banks have no shaded area so if you want to have your little ones down there you either have to confine yourself and the baby to a beach canopy which is kind of small. Or you can splurge $60 on a small 10'x10' portable canopy and a couple of dollar store bungee coreds, the kind you often see at large flee markets or farmers markets and festivals. It collapses nicely, offers shade, some come with bug netting, and makes for a nice poolside area to put your baby pool in while you relax. Use the bungee cords to tie the canopy frame to the pool fence so it doesn't blow away in strong winds at the beach. Well worth the effort to bring on our beach trip.
When you arrive at your rental house make sure you check under every cabinet that the kids can get into as soon as you get there and have put up the baby gates. There are usually cleaning supplies that someone has left behind that need to be put out of reach.
If you are vacationing with kids who are still in diapers, establish a designated spot (or two depending on how big the place is or how many floors there are) for disposal of the diapers. If you are staying on the top floor of a house you don't want to run down to the bottom floor at 6am just to put a poopie diaper in the trash. Make sure you have extra trash bags to throw the stinkies in.
Check the lint filter on the dryer before you use it. No one ever seems to remember to clean the filter on the dryer and I do not want the place to burn down on me while my beach towels are drying.
Unless you have a wagon like this with huge fat air filled rubber wheels, your radio flyer wagon isn't going to cut it. And neither is your large wheeled jogging stroller, even if you pull it backward with the big wheels first. The wheels are just too skinny and sink right into the soft sand But it is worth it to rent a beach cart like this for a few buck for the whole week because that way you load the cart up, pile one kid on top, and carry the other while you drag them through the sand. No matter what you do, you WILL be exhausted and taxed to your physical limits just to get to and from your spot on the beach. But it will help just a tiny bit if you have a beach cart to haul what you thought wouldn't really be all that much but has suddenly taken on the weight and bulkiness of six elephants.
If you are flying kites with your little kid for the first time, don't bother bringing out the fancy cool kite you bought back when you were young and had money to splurge. It simply isn't worth the time and headache and frustration to try to get it up fast enough to make your kid happy. Instead, get the cheapest lightest kite you can from the dollar store. Because it will go up fast, and then about 30 seconds after you hand it to your 2 year old to hold onto they throw the string handle away and watch it crash of fly off into the dunes.
The car dual screen dvd player is a parent's best friend on a long drive. I feel sorry for our parents who had nothing of the sort back when we were kids.

I'm drawing a blank on any of the other useful things I learned this week. But if I think of any others I will try to post them. If you are going to the Outer Banks for vacation I also recommend you visit the brand new Children At Play Museum in Kill Devil Hills. This museum is really just perfect for the area, and it's not a new concept as there are many similar places popping up around the country. We've visited the Playseum in Rockville, and Baltimore County Public Library system has two different Storyville's that are the same but on a much grander scale and free. This particular childrens museum opened up the week before we visited and I have to say that on a rainy day with little kids this is the perfect place to go when you can't do the pool or beach and don't want to go to the movies. It's designed for ages 0 to 7 years and has a corner for every interest, including infants. It's just a small store front that has been converted into a large playroom full of learning toys, sensory toys, an arts and crafts corner, a boat you can pretend to sail and fish from, a pretend grocery store, dress up clothes including tiny scuba gear, a lighthouse, an underwater tunnel, a ball pit and an airplane teeter totter. The fee to get in is $5 but that's good for the whole day so you can leave for a while and come back later in the day. It was nice to have an air conditioned kid centric play area where the parents could just sit and watch and talk. I'll be posting pics of our visit to the kids museum below.

The boys were alternately terrified of the beach and the pool and brazen to the point of recklessness with enthusiasm for the water. At the beach they would be upset and within a split second love the sand and wind and water. So much to see, feel and do at the beach. And the same was true for the pool. They were afraid of it at first, and very upset when we put the floaties on them, but later they couldn't get the darn floaties on them fast enough. By the third day they were both asking for the beach (which like other words such as fork and ocean always sounds like a dirty word when my kids say it) or the pool. And they were very specific that they wanted to go in the BIG pool and not the baby pool. They were fearless and would try to jump in belly first on their own. They loved the ladder to get in and out of the pool and now know how to peddle their legs while swimming. They also drank more pool water than I'd like to think about. I think if we'd been on vacation for the full seven days by day four or five they would have had no issues with walking in the water on the beach and swimming like fish in the pool.

Our trip home took 9 hours because of traffic and stops along the way, and it's very good to be home. Especially since none of us slept on the ride back. But we are so ready for next year's vacation and are already planning the week out. We even joked that one day this same group of parents will be looking back on this year's vacation and shake their heads laughing at how rough the early vacation years really were. Thanks to the P family and the S family for joining us and making the trip so much fun. Next year there will be a whole lot more pictures taken. There wasn't a lot of time for me to pull the camera out.

Recuperating and watching cartoons on Granny Cathy's bed.

Daddy trying to cheer everyone up by getting in the ball pit on a rainy sick Sunday.

Spiking Fevers

2010-08-13T21:27:00.000-04:00

Last week Cameron had a virus that caused some pretty high fevers. They lasted about five days and then he was right as rain, though very contakerous about his eating. He's eating better and better every meal now so I think he'll be back on track by the end of this weekend.

But yesterday Evan came down with the virus exactly one week from when Cameron's fevers ended. And it's hit him hard. Yesterday his fever peaked at 104. This afternoon around 4:30pm it peaked at 106.1. We gave him a cool bath and more motrin and an hour later it was down to 99.8. But now at 9:30pm it's crept back up to 101 and he's tried to vomit twice already. I say tried because for some weird reason nothing much has come up, but the vomiting session is longer and more violent than usual.

Hopefully this virus will finish very quickly, certainly it needs to finish faster than Cam's did. We have big plans for this weekend and they will all get tossed in the toilet if this fever doesn't disappear.

Changes in Feeding & Visiting Friends

2010-08-12T22:49:00.002-04:00

We were having some better successes with feeding the boys until Cameron got sick last week. Now he's really frustrating to feed when he used to be more joyful. It's okay, I know that he'll be back on track eventually and it's because he was so sick (he had a raging fever up to 104 for a couple of days) and that once he's been better for a while he'll get back on track. They are starting to get better at consuming volume and the best meal of the day is usually dinner with lunch being a close second. And they are exploring and experimenting more with solids and flavors too.

But our biggest issue is still behavioral, getting them to open their mouths wide enough and not use their lips to smooch the food of the back of the spoon and getting them to lean forward to take the spoon instead of just shoving it into their mouths. We really have to be sticklers for compliance and they only get about 5 seconds of opportunity to comply or we remove the toy/pause the DVD. I've also found that if we have the DVD elevated higher it raises their line of sight so that it prevents them from dipping their chin low preventing more of the spoon from getting in their mouth. I raised the portable DVD player up on a stack of DVDs and this has helped quite a bit.

Evan does have a new food that he loves and will wolf down in addition to green beans puree. BeachNut stage 3 squash & zuccini puree. It's only 70 calories per serving since it's mostly water and is a thin soup like puree, but he likes it so much that I can get up to 3 or more ounces in him, which compliance and volume wise is wonderful. Cameron doesn't seem to have any one favorite food exactly but he's very interested in Pepperidge Farm Goldfish cheddar crackers. But I have to be careful to break each fish into tiny pieces or he will choke and gag on one whole fish since he does not know how to chew anything yet. Cameron also has been asking for hot dogs and hamburgers though he doesn't eat any measurable quantity, it really is just a matter of a few crumbs. It's a start.

The boys still puke at least one to two times a day, usually about one to three ounces at a time. And always only when they are on their feeding pumps and laying down asleep. The new formula (BKE1.5cal) is less in volume but much heavier formula, so they are still having the exact same vomiting issues as when we have been on any other formula. But we had our first post-feeding clinic GI doctor follow up and the results are that Cameron is exactly on the 50th percentile for weight to height and Evan is up from the 5th percentile to the 10th percentile for weight to height. Not fabulous growth, but pretty much where we want them to be for their age and height. Cameron now weighs 28.3bls and Evan 25.4lbs. Not sure how tall they are since it's incredibly difficult to talk to doctors while there are two screaming toddlers causing chaos at your knees and running to touch everything they shouldn't.

And have I vented about that lately? Moms taking one baby to the doctor have it so damn easy! OMG! I don't think I've ever had a conversation with any doctor where I could actually hear anything they were telling me, or be able to ask all the questions I wanted to, or even read the boys growth charts with my own eyes because the boys are so rambunctious, demanding, loud, scared, grumpy, bored, tired, angry, and or feel like crap. Even if I have help, my attention has to be divided literally 6 ways for just two kids. One for the doctor who's asking questions and telling me things, one for one nurse doing something to one boy, one for the second nurse who's doing something to the other boy (because even though I get/pay for two back to back visits with the same doc in the same room they still try to slam us out the door as fast as possible and so they like to do everything to both boys at the same time as much as possible), one for my helper (my husband or mother) who is also asking questions or struggling with a boy, and one for Cameron, one for Evan who are both getting into some kind of very noisy mischievous trouble or having a meltdown or vomiting. My ears ring from the noise and my head swims with information for hours afterward and it always feels like I can never remember any of what was discussed in great detail. We are THAT family in the examination room next to the one you are waiting in for the doc to get to you your kid, the ones that are so loud and obnoxious and take forever to finish up. And why must all doctors offices all have such TINY stifling hot or freezing cold examination rooms? I know that people bring all their kids in at once usually, so you would think they'd make the rooms a little bigger and more comfortable. Sorry for the digression...

Back to what the GI wants us to do. She feels that we need to try to make the boys hungrier and typically would make us put them on only overnight continuous feeding pump sessions and only feed them by mouth during the day. But since the boys throw up at least once for every 4 hours they are on the pump, and we'd have to wake up in the middle of the night to refill/top off the bags with more milk, we would still be up every three hours and dealing with twice as much potential vomit every night than we already do.

So now the plan is to go from giving the boys 600mls/day of formula (that's 900calories/day) to about 500mls/day of formula. We have to make sure that they consume the missing calories and fluids by mouth, which is stressful beyond words. And since Cameron has been sick we have really struggled with it. And now as of tonight, a full week after Cameron's sick ended, Evan is sporting a fever of 103. But cutting the volume of formula must be working. Evan is eating more than he's ever eaten in his entire life and doing so more and more frequently. Here's his very first completed 4oz jar of green beans.

Our social calendar has been jam packed and my new camera was in the shop for a busted zoom so I don't have many pictures. We took the boys to the baptism of our friend Baby Maggie and the boys had their first slightly successful visit to a church.

We spent time celebrating baby cousin Dillan's first birthday which was nice, especially because we got to see some friends of ours that we don't get to spend much time with now that we all have busy families. And also because the boys got to spend a weekend hanging out with their paternal grandparents and have really started to warm up to them in ways that are just precious.
Birthday Boy Dillan

But over the weekend we were able to have some fun with some preemie friends and their parents in our first ever national Bump.com Preemie Board Get Together. We all met up for some fun, sights and food and it was nice to just hang out. The weather could not have been more perfect for our outings. It was so much fun to see everyone and the best part is to look at these pictures and know that all these kiddos have come so far, and so have their parents.

And getting seven toddlers to sit still for a photo op is just impossible.

It takes all 14 parents and in the end the only sure fire way to get the picture is to get in there and pin the little stinkers down, or pick them up and have the dads take the shots.

And to wrap up this week here's a special shout out to my friend Sweater.

What's that you say? It's your birthday?

Oh no, how scary!

But since you're Super MoM it's a piece of cake!

2010-08-09T20:39:00.001-04:00

Test

Close Your Eyes

2010-08-04T08:33:00.003-04:00

Since Sunday Cameron has been experiencing a fluctuation fever that ranges from 99.0 to 104.2. It only goes down with medication and Ibuprophin is the only thing that's getting it down to the really low number quickly. He's had no other symptoms other than being grumpy and a bit clingy and more tired than usual. Late yesterday afternoon I took him to see the pediatrician and left his totally symptom free brother Evan at home with Granny Cathy. It is rare that I get the pleasure of one on one time with my boys and neither one is ever upset that they have left the other behind, though Cameron did as where Evan was.

And I know I've gushed before about how easy it is to take one kid out, especially to a place like the doctors office, but I must gush again. It really is so simple. And now that they are walking I don't need a stroller and don't even need to use the eyes on the back of my head along with the extra pair of arms I've been attempting to grow. And I can hear everything that anyone says, I can answer questions in complete sentences and without interruption. There's no shouting over screaming kids or waiting to find a break in the shrieking in order to say a few quick words that someone can actually hear. For a change we were not THOSE people in the other room. And the best part is I was able to focus all my attention on Cameron and give him all the snuggles and fun that I have to divide between both kids on a typical visit to the doctors. I think he actually enjoyed the visit.

Anyway, the pediatrician thinks that Cameron has another case of Roseola. I know, you're saying "But you only get Roseola once." Apparently that's not entirely true, that it is not that uncommon for kids to get it more than once, but never more than twice. He is not coughing or sniffling, no extra post nasal drip though there has been an increase in his reflux so that he vomits at least three times a night. And he has had a dramatic decrease in willingness to eat, which I don't blame him for. I don't want to eat when I'm sick either. But he is drinking lots of fluids by mouth which is unusual and excellent. The only other symptom is that the pedi thinks she saw some of the red lace or pin prick like rash that one experiences with Roseola, signifying the end of the worst of it all.

I had hoped she was right because if the fever doesn't go away by Thursday then we are going in for bloodwork and an xray and some other tests to figure out what this is. And as of last night at 3am his fever did peak to 104.2. This morning it is down to 98.7 but I have a sneaky suspicion that it will go back up once his Ibuprofin wears off.

In the middle of the night when I go to check on him, catch vomit, and take his temperature he's been really great. They heat is radiating off his skin and all he wants to be left alone to sleep, and on Monday night he told me so in no uncertain terms. I was taking his temperature one last time around 4am and he grabbed my hand and looked me in the eyes and said "No Mommy, close your eyes." and rolled over and went back to sleep.

4oz of Green Beans

2010-08-01T21:37:00.002-04:00

Today is baby cousin Dillan's 1st birthday. Happy Birthday Dillan!

We went to his party and the boys ran around like maniacs. Then we went to Mommom & Poppop's house to eat dinner and spend some more time with the grandparents. And the boys had a blast running around like maniacs again, rattling the dog's crate, stomping around in Poppop's shoes, "mopping" the carpet with Mommom's swiffer mop. I guess being a maniac is what it takes, because for the first time in his entire life Evan ate 4oz of stage 2 pureed green beans in under 20 minutes without a single fuss, push or shove of the spoon, head turn, gag or retch. 4oz of green beans. It is a wonderful day.

(I took a pic of the empty jar with my phone but can't figure out how to upload it from my phone to blogger.)

posting from my phone

2010-07-31T14:59:00.000-04:00

I have figured out how to post from my phone but it's rather paiful and slow. Now that the boys are so active it has become a challeng to write anything and throught each day they do and say so many amazing things so I was hoping the would help keep me up to date on my post a little more frequently. I appologize for spelling and punctuation now.

Three weeks later - How's it going?

2010-07-07T20:55:00.003-04:00

It's been three weeks since we were discharged from Feeding Clinic's six week program. The first week things were fan-freaking-tastic. The second week things were tricky but still pretty good. I started to notice that the boys were less compliant and consuming as little of the food off the spoon as possible by using their lips to make the smallest opening and then push the food off the back of the spoon. This made feeding take longer and really has pushed me, my husband, and my mother off the deep end of frustration. And then there was the call from the outpatient follow up weekly feeding clinic therapist telling me that the one session we'd had after discharge would be our last and that we had used up all our OT and Speech therapy sessions for the year and would have to pay out of pocket for the remainder of the year. Um, yeah, are you F'ing kidding me? That's roughly $300 a week for each boy. We know that this is an error in the processing of the billing, though trying to get that straightened out has been tedious and we're still in the works. The bottom line is that the therapy the boys get is really HABILITATIVE and not Re-habilitative, meaning this was a condition that they were born with and need services for in order to learn how to sustain life. It seems dealing with this issue of coding and billing for habilitative care is going to be an ongoing issue. And this third week post-feeding clinic discharge has been utter misery during meals.

The best thing that's come of this though is that at least we know without a doubt that the medical staff at Mt. Washington really do care about the boys and how well they are doing once out of the program. When I called the program Manager Ellen she talked to the program's Director of Pediatric Psychology and he managed to make sure that we have 100% unlimited mental health coverage for the boys with our plan by joining our insurance company's network. This way we can see him every week and still get care and follow up services with him until our Speech and OT billing/coding issue is worked out.

And really, it seems that this is what we need most directly after the program discharge. I say this because the boys eating issues are primarily a behavioral psychological issue and the mechanical function of eating solids and dealing with the sensory issues related to eating is the secondary issue that will follow once they get past their fear of eating. This third week has been miserable because of a few reasons.

1. All kids will test their caregivers with behavioral issues after the program. And if every single person feeding them is not following the strict guidelines that the psychologist developed after the program ends they will see that the child will always find ways to get around what is being asked of them to do. Consistency, consistency, consistency is the key. For example, now that we're out of the daily program Evan will pucker his lips and make it look like he's opening his mouth to willingly receive food, but when you put the spoon in his lips you hit his teeth and the lips push much of the food off the spoon. Cameron also puckers like he's accepting the food, but puckers to the side of his mouth an even smaller opening than Evan so that you have to be quick and get it in there only to have his lips push all of the food off the spoon. Cameron would also dip his head forward to minimize the amount of the spoon contact with the inside of his mouth. The key to stopping this behavior is the consistency of the feeder to make sure that the instant the child refuses you take away their toy or turn the tv to a blank screen (or even pause it and put a towel over the screen so they can't see it at all) and wait until the child does exactly what you want. Hold the offered spoon steady, at a slightly higher level about nose height to make them lift their chin and raise the top lip so they have to open their jaw more to accept more of the spoon. The goal is to get at least half of the food covered spoon between the teeth. You also need to give them modeling behaviors (opening up your mouth wide with the "aahhh" sound) and giving one step direction like "open big". If each person helping me feeds the boys differently and with lesser degrees of accountability the problems we are encountering become much more difficult and we start sliding back to the beginning phases of their refusal to eat, and thus completely wasted the $6,700 we've spent so far on the therapy (thankfully not the $16k we were expecting because the psychologist is now on our network of doctors).

2. The person feeding them MUST be focused on what they are doing as well as making the feeding session as enjoyable as possible, especially when feeding using toys as the reward. I can't take a DVD player with me all the time, it's just not convenient enough or always possible in every situation. But if you are using toys, you MUST make it fun or they will not want to continue with ANYTHING you are trying to do, whether it's play or eat. When you have gotten a compliant bite of food you have to immediately give them praise as well as give them their toy back. But it's not enough to just hand the toy back. Sometimes you really have to interact with the toy to make it fun and you have to do it quickly before the child has time to really think about what they are doing and act out. If you are using toy Matchbox cars after each bite of food you can't just put the toys on the table and expect the kid to play happily, they are just too clever for that. They need you to very quickly make the cars do something like crash, hide behind their milk cup, drive up their sleeve and park on the head. If you just hand them the cars and expect them to play they will get bored with the cars super fast and that's when they start to act out. The reward system relies on the person feeding them to keep the entertainment going, which is why television is so simple and easy (though not exactly preferable, and we will be trying to work away from the television).

3. We left the program with the mindset of "Now we can think of feeding the boys in terms of ounces and not the number of individual bites of food". And we still don't but until this week I had thought we would be going back to the counting of individual bites. Agonizing. But yesterday we had a follow up session with the psychologist and he reminded me that: A) I have two kids with this eating disorder that is very difficult to work through and that I need to give myself a whole lot of credit for doing what I've done so far. This is really difficult for me to do, I'm always so much more panicked about the end result of getting them off the feeding tubes.

B) He reminded me that we should not be thinking in terms of either how many bites or ounces they consume, but in terms of how much compliance we get from them at every. single. bite. or sip of a drink. That this is the most important thing for parents of kids who will not eat at all or who do not feel hunger and won't eat enough to continue to sustain weight. We need to be getting 80% compliance before we can see a natural change in how the boys perceive eating to be able to move on to the next goal or level in the feeding therapy process. To get them to change a deep seated instinctual habit takes more than just 30 days of practice. This is sooooooo difficult to do, because we know they can do it so it's hard to fathom why it isn't happening faster. Feeding therapy is truly the slowest form of therapy there is.

C) That my situation is unique so that to feed two kids with this eating disorder at the same time means that I have to go extra slowly with my expectations because they are clearly picking up each others techniques on eating behaviors. Since I do have help, with my mom living with us, I can have someone feeding one boy while I feed the other. But this means that 50% of the time the boys get to "bend the rules" by not being held accountable properly through the feeding protocol. This is mostly because my mother, who will do anything in the whole wide world for my boys because she adores them with her whole being, is a bit of a softy and not really a task master at holding them to opening their mouths and taking drinks per the protocol and gets frustrated and forgets in her frustration to make the play with the toys lively. And I would be remiss if I didn't say that both myself and my husband also struggle with this at times. If you have read the protocol I've posted earlier you might think this doesn't sound that difficult, but really we're dealing with minute subtle signs and cues from the boys behaviors and postures that require instant reaction until their little brains are mapped so they have (one day in the future) developed the understanding that eating is good. To do this we have to be hard-nosed about feeding and how it is done.

So now to get the boys back on track I'm going to try feeding them independently of each other. When we're at home I'll still have them in their highchairs at the same time, but while I'm feeding Evan, Cameron will get toys and to watch television, and vice verse. But instead of feeding each boy for 30 minutes, I'll only feed them for 15minutes before moving on to the next kid or ending the meal totally. This does mean they are consuming less by mouth, but I can focus on getting 80% compliance from each child at every meal instead of only half the meals. We will focus on increasing the volume they consume when we've gotten back on track with mastering the compliance of eating.

As for the vomit, well, it's still one to two times a day, usually once on their lunch bolus and once at night for each kid. So yeah, our sleep has not improved. And there is no snooze button on these kids either. Believe me, I've looked for it.

But they both willingly tried two small samples of Maryland steamed crabs over the Fourth of July holiday at our friend's house. And I think they both really enjoyed it, but after two self directed self fed tastes they reached their threshold of trying something new and ran off to play some more. Good times!

In other news... The boys are really turning into people. Their personalities are starting to shine through more and more every day and they are both going through MAJOR language explosions.

Evan is saying two and three word sentences now, and has really started becoming much more vocal, more loud, and more expressive. He's singing songs and signing words as well as saying lots more complex words like, "elevator, mixer, tow truck, thank you, excuse me, help me up, falling down, round and round". Today we had his six month review of his developmental skills and with the obvious exception of Occupational Therapy issues surrounding feeding and eating, Evan's only delays are in language. He's been evaluated at the 19month old language ability, which still keeps him at more than a 25% delay in language skills and means that he will continue to get Early Intervention services through the county and state for Speech. Naturally he and Cameron will continue to get OT service but they are strictly for the feeding/eating issues. Otherwise Evan is caught up and completely performing normally within the 24 month old to 27 month old range for his gross motor skills, fine motor skills, social and cognitive skills. Evan is also quite the social butterfly and does not appear to have any anxiety in groups and does not get upset when I need to step away or leave the room.

Cameron is a veritable tape recorder with full and instant replay capabilities, so we have to watch EVERYTHING we say now. He's saying not just long sentences but this morning I was in the kitchen listening to him playing with Evan. He told Evan, "Stay Evan. Stay Evan. Stay right there. Evan hiding. Count. One. Two. Three. Where Evan? Where Evan? Come out, come out wherever you are! There Evan, I found you!" Evan was hiding inside the giant cardboard house I had built him, giggling like a mad scientist waiting for Cameron to "find" him, right where he'd left him.

Evan is also doing more daredevil tricks like headstands, climbing, climbing up the slide feet first into a standing position (!??!?!?) and walking down the slide without falling or holding on to anything, and sliding down on his belly head first. This one is fearless, I tell ya!

They are getting better at holding my hands when we need to walk someplace but if it's a long walk or I know that I'll need a hand free I have to take a stroller if I'm alone or I will lose a child somewhere along the way for sure. They are unpredictable, unstable, fast and wiggle out of the tightest grasp. I've got leashes and will use them when I'm alone, but they are almost a hindrance at times and cause the boys to fall down when they hit the end of the line. They also are getting better at using people's names, telling me when they have an owie and need a hug or kiss, can tell me to wipe their face or nose, and tell me most every time that they've gone poo-poo.

This age has been by far the most fun, but it is also just as exhausting as when they were teeny tiny fresh from the hospital. The never stop moving, they are busy and always running in opposite directions. They get bored and that means mischief is on it's way. Time outs are becoming more common as they test their boundaries, but all in all I think I can honestly say that I'm having more fun with the boys than I've ever had before.

Hip Hop Hooray Babies!

2010-06-24T13:43:00.000-04:00

Two Toddlers and a Garden Hose

2010-06-24T12:33:00.000-04:00

Five More Minutes

2010-06-22T14:08:00.002-04:00

We often will give the boys a 5, 2 and 1 minute warning before moving on to something else. For example, now that they sit in the bathtub without baby seats they love it even more and will pitch an absolute fit when we have to take them out to dry off. Or when we have to go inside from the yard to eat dinner, or when we have to turn the tv off.

Yesterday Cameron started demonstrating his understanding of this concept. Now he tells us "five more min-its" to be finished with dinner, or "five more min-its" before he wants us to go outside, or to go home, etc.

Evan is into building towers and knocking them down saying "Oh noooooooooo!" with his hands up in the "what happened?" position, like it's a great tragedy. So stinking cute.

Recuperation

2010-06-21T12:17:00.003-04:00

The boys are still trying to recuperate from their seven week ordeal we call "school" (aka feeding clinic). The whole production was just very overwhelming and exhausting for them. Evan is starting to slowly sleep a little bit better and I think by the end of this week he will be fully re-sleep trained. I on the other hand may have to be re-sleep trained myself. Evan is up by 5:45am because he poops, and who can sleep after they've pooped? But Cam is sleeping pretty well until 6:30 or 7am. But they both are exhausted and ready for nap by 10:30am or 11 and will nap for about 3 hours or more.

And they are starting to slowly get over their separation anxiety that developed because they would see me and then I would disappear at feeding clinic. Well, I should say, Evan didn't seem the least bit bothered by my leaving him and often would walk away without so much as a glance or a bye-bye. Cameron is my little emotional worry wart and he would refuse to get out of the stroller, would cling to me, cry and scream until he puked when I left him. Pretty typical of kids going to daycare, even the puking though Cameron is much more adept at it than most kids.

And when I would observe the boys in their feeding therapies Cameron was always asking the staff "Where Eban? Where Eban go?" At home Cameron was constantly reaffirming that "Mommy here?" and "Daddy here?" and "Where Eban? Where Granny?" Now that we are home every day he's always looking for me and gets very anxious when I leave his sight. Even to wash my hands in his line of sight makes him anxious.

Cameron is very good at making himself understood, though to the outsider it might take some translation. This morning I was putting some After Bite anti-itch cream on his mosquito bites (the damn bugs love Cam but rarely get Evan) and I guess it was a little stingy because he's scratched the bites open. He scooted away from me and with a very worried face said, "No more, all done, Eban's turn, do Eban." He did not want me to put any more cream on him and that was that.

Last Day of Feeding Clinic

2010-06-16T20:41:00.006-04:00

This is the boys on their final ride home from our very last day of the Mt. Washington Pediatric Hosptial's Outpatient Feeding Day Program. They were very happy, we are very happy.

We were discharged today having reached almost our goals. To refresh your memory the goals for the boys were:

1. Increase solid food intake to an average of one ounce puree/soft solids per meal. (This from a starting point of 0grams, literally they ate no measurable amount of solids at any given time under any given consistent circumstances regardless of everything we and our OTs and STs have tried.)
2. increase liquid intake by 50% over 2 day baseline. (Again, their liquid intake was not a consistent measurable amount, and even on good days at home it was rarely more than an ounce or two maybe once a week.)
3. demonstrate appropriate self-feeding skills with utensils 10x per meal. (This was not exactly demonstrated by Evan though I think that we may have found a method of reward that will encourage him to try this as he becomes more comfortable with eating and develops preferences. But Cameron can do it with Chicken & Stars soup if he is allowed, though not well.)
4. demonstrate an average weight gain of 5 to 10 grams per day.
5. present with 80% appropriate mealtime behaviors (that means that 80% of the time that the child touches a food they have an appropriate and favorable response to food which includes licking, sucking, touching with hands or lips, etc.)
6. Caregivers to be trained on feeding protocol and be able to implement the protocol independently.
7. This applies to Evan only because he does not put food in his mouth and tolerate it at all, unlike Cameron who is now willing to put solids in his mouth. Evan will demonstrate emerging lateral processing skills with meltable solids, 10x per meal. (This was achieved with purees that are of a Stage 1, 2 and some 3 levels. But it was not achieved with crunchy solids because we were not able to get Evan to put solid crunchy foods in his mouth all the time, but it is emerging and there is some more tolerance of putting the food in his mouth to explore.)

We will continue to follow the protocol that the program has developed for us because it does work. And it works VERY well. And they boys REALLY get it, they really do understand that in order to make us happy they have to comply with our request to eat before they can have their reward. But like everything in a toddler's world, everything must be done in moderation lest you burn them out. So we will continue to encourage more steps of the required behavior before giving them the reward by asking them to take instead of only one bite or sip, to take three or four or five bites or sips before they can have their tv show back on or their toy returned to them. And when I say they get it, I mean that they only have to notice your hand moving towards the pause button and they will instantly open their mouth wider, lean forward, and attempt to get the food to their mouths as fast as possible, all the while staring at the tv screen. In fact it almost works too well because when we present crunchy foods the boys need us to turn the tv off so that they can focus and make the decision to want to work with the crunchy foods, because with the tv on or the toy present they have a distraction that is more tempting than the stressful decision and action of working with the solid crunchy food.

So does this mean we always have to have tv on while they are eating?

For now yes. We can go out to restaurants or friends and family and not have a tv and just use toys as their reward. But the toys don't always work and we have to carry around a lot of small toys to cycle throughout the meal for each child. We do have a portable DVD player that we can take with us. But as of yet, this method of eating has not exactly been tested outside of home and the feeding clinic. We will continue to tweak and improve on our method, but eventually the idea is that they are young enough to make a smooth transition from eating because they want the reward of a prize to eating because they like and want to eat; since formerly they could not and would not associate eating with comfort and pleasure. Cameron does now tell me he's hungry and thirsty, and Evan gets the concept but has not had to put the process of asking to the test since his verbose brother does the work for him.

We will continue to have feeding clinic outpatient sessions but they will only be once a week. And they will be at the satellite facility that is located in the PG County Hospital. The reason we will be going there is because A) it's only 15min from home on an easy straight shot with little to no traffic, B) we have worked with and also really like the OT and ST at that satellite office during our 10month waiting period to get into the Feeding Clinic so they know us and we know them and there should not be any stress with the boys being reintroduced to these therapists. We will have follow up appointments with the whole Feeding Clinic team in six months in September and then we will review where we are and whether we need more intensive therapy or if other more significant changes need to be made to the boys protocols.

Was it worth it?

The short answer is yes, I do think it was worth it. Both boys now eat 2oz of a pureed food by spoon and anywhere from 1oz to 4oz of milk four times a day (breakfast, lunch, snack, and dinner) and they are experimenting with solid crunchy foods willingly. Feeding the boys is not as stressful, not as much of an all out battle that I had to mentally as well as physically gear up for. There is consistent improvement in what they eat and how much they will eat. If we continue at this pace I feel like we theoretically could be off feeding tubes within the next year. And the boys will be eating all the same foods their peers will be eating by kindergarten.

Without the psychologists understanding that the root of our feeding issues is the anxiety that the boys have at the sight of the spoon and ways that we could positively work through their anxieties in ways that set them up to comfortably succeed and allow themselves to trust and be challenged without fear is for us the world of difference. It was a very fine line between forceably feeding my toddlers and giving the boys control and choice and the ability to make their own decision about accepting food that is offered. I could not have done the hands down procedure on my own in the initial phases. I wish that I could have video taped the hands down process to show you how scary it was to see, even knowing in advance what would be done and how, that the boys had natural ways to show the psychologist that they would not try to eat so that he would see the cues and know to stop and let go of the child. They could have refused, screamed, made themselves hysterical for as long as 30minutes refusing the entire time they were pinned to a chair by another adult unable to move anything but their mouth and they could have refused to open their mouths. But in the end after only less than 28 very loooong seconds (yes, I literally counted them) they did open their mouths and did willingly take the spoon of food. And within 24 to 36 hours they were both willingly taking spoonfuls of food that they would otherwise have swatted away without even looking at them. Even today I do have moments with Cameron that I have to pin his arms down with my hand and use that same forearm to hold him back in his seat while he shakes his head from side to side crying and screaming at me no. But then he does take the bite and I let go and turn on the tv or give him a toy and he's all smiles and happily accepts the next bite. And ever since the hands down protocol the boys food consumption has improved by leaps and bounds.

The long answer is that I think it depends on each individual child and their different issues, what their parent's involvement is and how well they grasp the scope and difficulty levels their child is dealing with. There are so many different eating disorders that I can't competently describe who would be a good fit for a feeding program. There are kids that look healthy and actually do like to eat, but just won't eat enough to maintain the minimum body weight requirements to survive without feeding tubes and are simply not interested in eating and never feel hunger. There are kids that just can't bite down and need help figuring that out. There are kids that have swallowing disorders, aspirate food, overeat, swallow whole pieces of food without chewing at all, the list goes on. And the success of these programs requires that parents need to also be able to have patience and be consistent and persistent without showing frustration for excruciating periods of time measured in years because of all the different kinds of therapy out there, feeding therapy is the one that is hands down the most difficult. I often got the sense that the therapists had issues with some parents about their involvement and that parents often think that they drop the kid off and when the day is done they've learned to eat and they go on about their buisness, when the therapists really need them to come and observe what's going on to get feed back from the parents because only the parents can read the child's signals best since they are the ones who know the child best.

For a program like this to work it really depends on the child being able to self soothe or at least be able to be redirected and calmed down so they can begin to move on with their day, the parents really need to be out of the picture and the kid needs to begin to learn to deal with life in this safe environment so they can begin to make choices without being influenced either directly or indirectly by a familiar person. It's immensely helpful if they have the ability to understand simple one step directions like "Take a bite. Touch the chip. Stir the soup. Open the box.", know their body parts (ie. mouth, nose, teeth, lips, cheek, tongue) as well as action words like touch, lick, kiss, bite, and being able to count even if it's only to the number three. This way the therapists don't have the additional hurdle of teaching these concepts in addition to teaching the child to tolerate and accept the actions leading up to their interactions with food. I think for us it worked because the boys had just learned all these concepts, gotten over their severe stranger anxiety, and needed people who could take them out of their environment and set up new expectations for them to follow so that they couldn't fall on their reliable behaviors to get them out of eating. And in our case it was a very fine line between force feeding and removing automatic defense mechanisms so their brains could decide what was best for them.

What's next?

We will continue with our weekly OT sessions with the Infants & Toddlers Early Intervention program and go back to weekly feeding therapy sessions with the Feeding Clinic's satellite location. Like everything else in the boys lives it's still a dance, two steps forward, one step back. We are expecting there will be setbacks, the boys will mature in their own different ways and get wise to our methods and we will have to work with the psychologists and behaviorists and therapists to stay on top of this. The tv and toy reward protocol wont always work, but hopefully we're creating a foundation for them to develop solid pleasurable experiences with eating and once those skills and senses are formed and the pleasure of some things food related will be mapped to the brain permanently.

If they told me today that they thought the boys could be eating a hamburger on their own by the end of August I would happily continue doing this program every day. But it is VERY hard on a toddler to do this program. By today the boys were exhausted, cranky, unwilling, and generally miserable. If the commute was less than 30 minutes one way I think that would make the experience very different. But my boys are troopers and managed to last it out the whole six weeks (actually seven if you count the week of their horrible virus where we missed clinic to stay home and get better).

Every single person on staff was so nice, very understanding, and really do love kids and has shown personable interest in seeing the boys do well. They all sought feedback from parents on how to deal with each child in the most comfortable way for the child, but they also would not let the child get away with any unhealthy behaviors that would thwart the eating process. The playroom staff are very good with my boys and they genuinely liked Ms. RayRay and Ms. TeeTee and learned that someone other than Mommy and Daddy and Granny can help them when they are sick and can help them go to sleep for nap time. They made the boys day fun and helped them with their social interactions with other kids. And the fact that Evan has to be re-sleep trained because the staff had to rock him to sleep occasionally is no big deal. Hell, I know how hard it is to get two two year old toddlers attached to feeding pumps to take a nap, and they have ten kids of varying ages and disabilities to deal with. Re-sleep training my boys is small potatoes.

Most of all I must mention the program nurse. Because of her understanding of the boys life experiences with medical staff the nurse Mrs. Michelle above all others (outside of the feeding therapists and psychologists) was able to impact the boys in the most surprising and blessedly helpful ways. Nurse Michelle was able to help the boys learn to trust her, learn to tolerate having their temperatures and other vitals taken several times a day, let her use a stethoscope on them without screaming in abject terror, be stripped down to their undies and stand still on a scale, have someone other than Mom and Dad touch their MicKey buttons, and.... SHE EVEN TAUGHT THEM HOW TO TAKE ERYTHROMIACIN BY MOUTH!!!! Her patience dealing with the boys made Evan's trip to the ER and the subsequent doctor's visit for both boys afterward bearable and totally doable by one adult.

The program has improved their lives, and while the things I've listed as improvements are small or odd, they are major improvements and make our lives much better. So yeah, I liked this program. And it's very possible we will have to do it again one day. But I will not be nearly as stressed over it the next time.

3 days to go!

2010-06-14T12:40:00.008-04:00

Team work using the "fire hose" to fill the pool yesterday.

Today is the third to last day of feeding clinic. Tomorrow and Wednesday my husband and mother will be spending the day observing and being trained on how to feed the boys using the proper protocols to deal with their eating behaviors. Because their issues with eating are truly behavioral stemming from being conditioned by so much vomit and pain. They can both eat purees and bite and chew and swallow with no problems, it's a matter of convincing them to do it and to get over the gag reflex. It's not enough for me to show them how to feed the boys, they really need the therapists to show them and give them instruction and guidance on dealing with the boys refusals and quirks.

As of right now their protocol to feed both oral averse, spoon defensive children at the same time is this:

Therapists are assigned to provide assistance and keep track of the feeding data (refusals, acceptances, gags and emissions). They also are there to help block the boys from the television with a folder instead of my having to pause the television. (It is to the point that if they refuse and then see me reaching to pause the tv they will suddenly lean forward and open wide to get their food in order to prevent me from taking their television away.)

They eat the best when sitting in the traditional highchairs, but can be fed in a simple booster seat with a lap belt and tray to keep them seated too. I will feed them several sips of milk (maybe 10 to 20 sips in a five minute period) and may occasionally have to pause the television because they are either so mesmerized by what they're watching or they are ignoring/refusing the drink. Then I will take turns feeding 5 to 10 bites of a smooth puree, either a stage 1 or 2 and some stage 3's though those are quite a gag challenge and they will consume less volume of stage 3's. Then after those 5 or 10 bites I will offer the child their Take & Toss sippy cup to sip from while I turn to his brother and follow the same steps.

When the spoon is offered if the child refuses or ignores the spoon or swats it away, then the tv is paused or turned off until the child willingly takes the bite of food or sip of drink. Because they are only 2 they aren't crafty enough to know that they could continue to refuse forever and ever, and since we know they like some foods they willingly do accept some. Eventually the process of opening the mouth becomes rewired into their brains as an automatic response and they barely even know that they are doing it. Hallelujah! THIS very thing is the reason why you want to get your non-eating child into a positive reinforcement program like Mt. Washington's Feeding Day Program as soon as possible. Because while they've lost two years of eating and oral development skills, they are still young enough to basically rewire the habits that we take for granted as adults without oral aversions. And this is why we never would have gotten to this point on our own at home. Because in order to make sure that we could thwart the boys defensiveness and fear of eating was to have a program that was perfectly consistent and positive and had the physical manpower needed to do the "hands down" procedure to take away that automatic defensive response to swat the spoon coming at them. Initially this is something one person could not do, but now with the proper conditioning of the boys by the program and training for me, I can do this by myself with one hand on the child and one on the spoon. It is exhausting, and will change and morph and be modified as the grow and learn and try to test their boundaries and limits, but it works and very well.

This by necessity means that to feed both boys at the same time meals take longer than any one meal should take for a 2 year old. But if there is no one trained to help then this back and forth, taking turns eating/feeding is the only option.

You might be thinking, "Well you have help at home so why not have one adult feed a kid while you feed the other, Laura?" But this makes it difficult too unless the boys are facing in different directions and watching two different screens and can't see each others tv's. And how productive and functional would that really be? If there are two of us feeding the boys but only one tv it' is crucial that the two adults know exactly how to feed the boys using the proper protocol AND both adults must observe each bite of food by each child so that they are aware of whether or not they need to hold back on offering a spoon of food so that the other person can pause the tv without negatively impacting the child who is eating well. So in practice it's MUCH easier for me to feed the boys alone without help, but it takes longer and they may not consume as much food quickly as if they are fed individually. But that's the lot that happens when you have two kids with the same feeding issues.

We have been able to use the Response-Cost Contingent Reinforcement with Video protocol (that just means they can't have the tv back on until they take a bite) with crunchy foods too, though Evan is still too afraid to try to bite down. I know he can do it, but just getting him to do it is our next huge goal. Cameron will now take small bites of crunchy foods and now eats Goldfish crackers, Ritz Crackers, Gerber Lil'Crunchies puffs, cheese curls, and veggie stix.

It's still a very long and very slow work in progress.

First Haircut

2010-06-12T12:55:00.030-04:00

We have FINALLY gotten the boys their very first hair cut. Scissors have never come close to a precious hair on my boys heads. Until today Evan's very first extra long lock of hair, the one that was a good two inches longer than all the rest that I used to comb over the top of his head when he looked like a miniature 50 year old balding man is now sealed in a little keepsake baggie. Cameron also has his first curls sealed away too. I had wanted to wait until people were mistaking them for girls, but the constant issue of food getting in the hair was a pain to manage and it seemed like the boys were ready for the experience.

Now, I know you may be thinking, why not just do it yourself? And believe me, my husband and mother both fought the good fight. But I do not cut hair, ever. They will end up with horrid lopsided bowl cuts with odd random bald patches. Worse, someone would lose a finger or an eye. I am one of those people who has happily accepted that this is one thing I do not want to do myself if I don't have to. And especially for something as momentous as their first haircut. I wanted pictures of the event too, and since I am the resident photographer (although my skills are poor) I couldn't very well take pictures and cut hair at the same time. Plus who doesn't want to sit in a firetruck, airplane, or police car while watching Dora the Explorer when getting their "hairs did"?

Every weekend for the last 7 weeks we've been trying to go to a great place called Pigtails & Crewcuts in Annapolis. Each weekend was always something that prevented us from going, the boys took extra long naps, the shop was closed for the Memorial holiday, then they were closed for an employee's wedding, then the boys were sick, on and on. But I was determined to go there. This place specializes in cutting childrens hair. It's bright and has lots of toys and a train table for the kids to stay busy. If they like a toy off one of their shelves you can let them play with it if it will help keep them distracted, and then if they really like it and you want to reward them you can buy said toy too. Instead of the standard chairs you have in most salons they have an old fashioned airplane, firetruck, and police car. But if your child is agitated and needs mom or dad to help them, there are two chairs for the parent to sit in with the child on their lap instead. They also have a party room. Every station has a flat screen tv and the boys watched their favorite Dora episode. They barely noticed that their hair was being cut other than to swat at the hairdresser and whine a little bit. And I managed to keep it together and not get too emotional about my babies losing their first curls. Cameron's hair will likely be as pin straight as his father's hair. But Evan definitely still has some body and curl to it that I know will come back in humid weather and when it gets long again.

The whole thing took less than 10minutes and we were done. The boys even got to pick a toy from the treasure chest before leaving because they were so well behaved. They no longer look like toddlers just fresh grown out of infancy, but toddlers moving full steam ahead into big kids. My babies are gone, but not entirely. They are still my cuddle bugs even if they look too mature for their 26mos age.

The boys this week during our first unsuccessful attempt at making a thank you photo for the Feeding Clinic. You can see their hair gets a little wild.

Leaving "school" on Friday:

Cameron before the hair cut:

Evan before the hair cut:

Bye bye first curls:

See that one lock of hair going in the opposite direction towards his cheek? That's Evan's super long first lock of hair. It was at one time the only hair on his head.

Look how long it is!?!?!!

I think most people will now be able to tel the boys apart pretty easily at first glance.

And now for the reveal..... Introducing....

Cameron and Evan

Evan

Cameron

Since the salon was so quick about cutting their hair we had about an hour to kill before lunch time and then heading home for nap time. So we walked to the nearby toy store, then we hit the pet store to check out the fish, lizards, ferrets, and rats. Evan was really impressed with the fish and kept going back to one take in particular and asking us "Where go?" (meaning, where is the fish hiding).

In this picture you can get a better idea of just how different the boys look to us, particularly noticeable is their size difference. Cameron is a half a head taller than Evan.

Evan asking "Where go?" of the fish in the tank.

Holy Moc-a-moley!

2010-06-10T20:42:00.003-04:00

Last Friday I fed the boys a mashed avocado. They loved it, especially Cameron. It is the first food they've asked for repeatedly. He loved it so much that recently he's been asking to "Eat dinner! Moc-a-moley!" Meaning he wants to eat guacamole for dinner. I would gladly give it to him except that when I gave it to him the first time it bound his BM's up for a whole weekend. Not sure why that happened because I thought it was one of those laxative type foods, but Evan had the same problem too. I'm going to wait a little longer until their bodies are back on track and then try it again since it was such a big hit.

Up with Calories = Down with Volume

2010-06-10T12:23:00.002-04:00

The boys vomit a lot, every day. Not news. But what is news is that we finally have a plan to maybe help them keep from vomiting. We have been asking the GI every day when can we cut back on the volume of formula the boys get every day. This way we can slow down the rate and get them the calories but not stress the stomach so they will hopefully not puke at every feeding.

The response from the feeding clinic is that we can't do that until the boys show that they are gaining weight from the intake they are getting by mouth. They need to be gaining an average of 4 to 10grams a day or more consistently. Since Cameron had lost some weight (which we expected from being stressed about starting the program and from being sick) we had to also add to our goal that he regain that weight he lost plus show the daily increase of 4 to 10grams a day. Evan did not lose any weight, but he plateaued which isn't really good either.

Since last week the boys are up for the first time since starting the program 6 weeks ago, and significantly so. Cameron is now weighing 12.5kilos (that's 27lbs 8.9oz) and Evan is 10.9kilos (that's 24lbs .48oz). Which is about how they've been trending in size difference all along and still keeping them right where we want them on their individual growth charts. This means that we can try a new formula (we are on Peptamin Jr and will be switching to Boost Kids Essentials) regimen to help keep the boys on track while hopefully keeping them from puking all the time.

Currently Cameron is getting 900mls of formula in 24hrs. His noon bolus feeding during naps being 200mls of formula with two scoops of DuoCal in that mix to make up an additional 50mls of volume we weren't giving in hopes that he'd stop puking in his nap. This is all given at a rate of 150mls. Then at night he gets the remainder 650mls with another two scoops of DuoCal to make up for some more volume we weren't giving him. The rate of this large overnight volume starts at 150mls for the first hour and then we lower it to 100mls for the second hour, and then we drop it one last time to about 75mls for the remainder of the night and let the milk bag on the pump run dry and turn it off some time around 1am.

Evan is pretty much the same schedule including the rate of flow that he can tolerate but he requires less volume than Cameron, so he only has been getting 850mls per day of formula in the pump. At naps he gets 250mls (with the DuoCal mixed in for extra calories so we could cut some of that volume) and then the remainder is at night with another couple of scoops of DuoCal for the extra calories.

Now the new formula the boys will be getting in their feeding pumps is Boost Kids Essentials (they make a 1cal mix that you can buy in stores for about $10 a six pack, but we will be getting a prescription version of this that is a 1.5cal mix through our medical supply company) and then we will also be feeding the boys this as their milk with meals. We will also be dropping the DuoCal completely. This is kind of a relief because DuoCal is pretty much just empty fat calories and no nutritional value. An amazing product to pack on pounds for kids who need it, very versatile in the ways you can cook and bake and mix into foods without effecting the flavor or consistency, but the risk is that they are missing out on vitamins and minerals and if used for an extended period of time without supplementing those lost elements can play tricks with the child's iron levels. Hence this is product should NEVER be used without consulting a physician first.

Cameron will be getting a total of 650mls a day (!!) that is the equivalent of 975 calories a day, which will be given in two boluses, the nap and the overnight feedings. At nap he will get 200mls and the remaining 450mls will be at night. Evan will be getting a total of 600mls a day (!!!) that is the equivalent of 900 calories a day, the 200mls during nap and 400mls at night. We will likely have to slow the rates down considerably to do our best to ensure that they don't vomit, especially in their sleep, which means that technically speaking they may not be off the pumps more or earlier than 1am. But because this formula has a tendency to be very thick and gooey or mucus-like when vomited up, thus causing a bit of panic when they have trouble clearing their airways, there's not much that I can do to help them when this happens so we have to try to slow it down to where their stomach can stay ahead of the digestion. It's scary for them and me.

We'll be also giving them a 30ml water flush as a chaser after their overnight bolus because now that they're getting less volume we have to be really, really, REALLY careful with their water intake because they may easily become dehydrated. This whole plan relies on the boys continuing to consume at least 2oz of a puree and 2oz of a liquid per meal three to four times a day.

But the bottom line is that assuming the boys acclimate to the new formula and tolerate it eventually at higher rates they will be off the pumps as much as possible and we can feed them more and more as their little tummies learn to tolerate more than 2oz of solids in them at a time. The Director of GI for the feeding program says that he's certain that the boys problems are a motility issue that is aggravating the reflux far longer than it ever should have. And he said that my boys have the most sensitive stomachs he's ever heard of when it comes to keeping them positioned right and is amazed that we can trigger a reflux vomiting episode simply by disconnecting their feeding tubes.

Yesterday morning we did our first run of feeding the boys together in the same room. Initially it was to be Evan's primary therapist feeding them but since he's never fed two kids at the same time he asked me to come in and do it so he and Cameron's therapist (who was watching through the one way mirror) could watch and see how best to modify the protocols since the boys have two slightly different methods that work well for each of them individually, but I have to be able to feed them by myself. That is to say, if I have to "discipline" one child to get them to take a bite (ie. turn the tv off until he takes the bite of food) what happens to the other child who's not being fed at that time but loses his tv because his brother is refusing to eat? It is a work in progress because individually the protocol requires that I pause the DVD player when the one child refuses. When I feed the boys together I need two therapists sitting on either side of the boys with a file folder to drop down in front of their eyes to block their individual view of the tv and get them to take a bite without punishing the child who's not being asked to do anything.

I only have two hands and can only feed one very resistant mouth at a time, so I'd basically have to become like the Hindu goddess Shiva with her many arms in order to feed them with this protocol. But then what mother of multiples doesn't need to do this every day?

My two year old can "read"!

2010-06-09T21:35:00.006-04:00

For a little while now Cameron has been able to finish the last word or two of each line of his favorite books. And today I was singing "It's Raining It's Pouring" and he was saying the words along with me (more in a speaking voice than a singing one). And tonight while changing his diaper I handed him a board book of "Brown Bear, Brown Bear What Do You See?" by Eric Carle and he started reading the book. And he would turn the pages to the next page for each new animal mentioned in the story.

I realize that this is just because he's memorized it, but it's the action of pretend play, the memorization, the pronunciation of the words, and the focus that blow my mind. And this is not the only book he can do this to, so it's not a one trick pony. He can "read" the books "Wow, Said the Owl" and "Go Dogs Go". He's also saying three and four word sentences and is a little parrot with words, so we have to watch what we say now.

Even Evan is doing some of the "reading" now too and will say the last word in each line of some stories, though we do have to give him an extra long pause and ignore Cameron's shouting of the correct word so that Evan knows he needs to speak. But he totally gets the concept and is really starting to open up.

Evan seems to be struggling with two major things: teething molars keeping him up all night every night, and sleep un-training. For the last three or four nights Evan has been waking up screaming every 5 to 40min and nothing seems to curb the discomfort. But his behavior is so unlike him that we almost don't know for sure if this is what it is. It seems that during the day he's fine and despite the lack of sleep he is getting (and us grownups too) he's performing perfectly at feeding clinic. The other issue is that because sometimes Evan has time settling down at nap time in feeding clinic, the girls managing the naps in the playroom have had to resort to rocking him to sleep. This is a big No No in our house, mostly because we can't rock both boys and whomever is not getting rocked gets upset and they generally don't sleep well through the night because they wake up looking for me. But since the girls in the playroom have 10 kids to settle down for naps or quiet time, four of them on feeding tubes, I told them to continue doing what works for them even if it's making our lives MISERABLE. I completely understand what it's like when you are outnumbered and don't have enough hands to go around and try to convince toddlers tied to tubes to go to sleep in a playroom. My misery will be short lived because I can re-sleep train the boys once the program is over, the girls in the feeding clinic get a whole new batch of kids to deal with every six weeks and have to start from scratch each time.

Tomorrow I will be working on a post to cover the last few days and the new protocol changes to the boys feeding therapies. Over the weekend they both consistently ate 2 ounces of either pureed stage 1, 2, and some stage 3 foods at every meal. Their liquid intake is back up again and the nurse hinted today that their weight is way up again and she'll be asking the GI director of the program if we can start cutting back on the boys formula volume in the tubes.

Hear Ye! Hear Ye!

2010-06-03T21:49:00.004-04:00

Today we had our Feeding Team/Family review meeting to cover how the boys have been doing over the last two weeks. Given that they had a horrible virus they are eating remarkably well. Their consumption of solids and liquids is up and their compliance is doing dramatically better.

Cameron's compliance with the requests to take bites and sips of milk at 88%, meaning 88% of the time he will willingly open his mouth for a spoon of food or take a sip of a drink. He did lose weight from being sick though not as much as I thought he would, only about 100grams lost total. Now his primary goal will be volume of food consumed. He's demonstrated that he can eat up to 2oz of pureed solids from a spoon and 2oz of milk in one 30minute feeding session without complaint and with no problems.

Evan has gone from immeasurable quantities of food and liquid, and his compliance to requests to eat and drink was at 0 and since we've implemented the "hands down" procedure (where we offer food and if he puts his hands up to block we hold his hands down until he eats the food before giving him his reward). Now his compliance is at 93%, though we do often have to block his hands so that he can't push the food away before it gets to his mouth. Evan, who was the sicker of the two babies, actually gained weight at a rate of about 4grams per day. He has been able to show that he can consume as much as 2oz of milk and almost an ounce of solid purees, though it could be much more if he would stop nipping at just the front of the spoon and open his mouth more. Evan's new goals are also to increase his volume of food consumed by double what he has been willingly taking, as well as getting him to open his mouth more and biting on a crunchy solid food and possibly even chew it. This last goal of biting a crunchy food is a lofty one for now and by the psychologist's opinion will take a very long time for him to achieve, but we feel that he will do it.

If the boys continue on this path we are hoping that by mid July we might be able to cut back on the volume of formula the boys are fed through the feeding tube. We have to see a dramatic improvement though, roughly 4 to 6oz of solids consumed per day (per boy, of course).

During the meeting I asked about the additional speech services the boys are getting there three times a week. I said that I was very happy with how much more language both boys are using to communicate and babble. Cameron is especially talkative and repeats EVERYTHING he hears very well. But I'm particularly concerned with Evan. When he does say words he never ever says them loud, never enunciates any of the sounds. And while I know he can say the word in the correct way I wonder if he's actually hearing it like he should because he can't or won't say it even when I get down on his level and enunciate and try have him repeat it back to me. I'm also concerned that he doesn't always respond when we call his name and I'm not convinced that it's because he doesn't know who I'm talking to or that he's ignoring me, because I know he's looked up at me when I talk to him from a distance and will follow commands (sort of) when I ask him to do something. His pronunciation is not improving either, the word water is pronounced "Wa-er" but he can say words that start with the letter D just fine. My thought is that Evan hears but not well and so that may be part of the reason for his excessive delays with language and communication. I know I'm not supposed to compare the boys, but Cameron and Evan hear and see and do all of the exact same things from the exact same people. They are exposed to all the same opportunities, and Evan even gets more speech services than Cameron. So why isn't he saying more, saying it louder, and saying more words with better enunciation? I have also not worried about it much because he is talking more in general, which is common for kids in intensive feeding therapy programs. Since the hospital the feeding clinic is in is set up for everything possible they can do it for us in the middle of the day without interrupting therapy sessions, provided the doctor is available before we're discharged next week. I think they will only be testing Evan at this point. I don't think they will test Cameron because he's just a chatterbox and is really very observant and quick to pick up new words now. Hopefully they can do it tomorrow.

Surreal

2010-06-02T12:58:00.004-04:00

In my last post I said that I would check on Evan at 9:30pm to see if his fever went down and stayed down. It didn't. It peaked at 105.1 and we went into fever reducing gear. More motrin, woke him up from a dead sleep to give him a lukewarm bath, started pumping him full of pedialite because he was sweating so hard.

This is the part where I thank the powers that be for the damn feeding tubes. Because even though I hate them and they are the bane of our existence right now, they are the safety net every parent wishes their kid had, right next to the illusive on/off button. When other kids get this sick their parents have to hope they can convince their little one to consume fluids and take yucky medicines. I can, without waking them, administer all the fluids and medicines they need and just have to cross my fingers that it all stays in their little bodies and doesn't get puked up.

Luckily the virus we had didn't come with any other symptoms so there was no extra puking, just scary high fevers that would come and go. We did go to the ER because that's what the advice nurse told us to do, but that was a waste of time and money. In the end they took blood from Evan, kept us until 3am before sending us to Children's in DC, who also did nothing before sending us home at 7am on my request. By midnight Evan's fever had been maintained, but the ER doc at the local hospital felt that his white bloodcell count was much too high (about 20,000 to the 4 to 11 count it should have been) and insisted on sending us to Childrens in DC. Children's felt that we'd managed to get the fever down, couldn't find a cause for a bacterial infection so deemed it viral and said we'd have to wait it out.

By Saturday afternoon Cameron also had the virus and his fever spiked as high as 103, but never has high as Evan's fever. It took until Tuesday for the fevers to all subside. During this period the boys naturally refused to eat or drink anything by mouth (again, thank god for feeding tubes) and we spent the weekend inside with veggie babies in front of the television, because that's all they wanted to do besides sleep. Fine with me.

We did continue to stick with our feeding routine, just with no pressure to comply. I mean, would you want to eat and drink when you're that sick? But because we didn't want to lose the progress we made we continued to try and go through the motions. And surprisingly the boys did eat, just didn't drink anything. They would open up their little mouths and take small spoons full of purees though nothing more than a few grams at a feeding session.

By Wednesday I knew they'd be fine on Thursday but still tired and so we called out the remaining two days of the week and just settled in to enjoy a long holiday weekend. On Saturday we went to dinner at a local Mexican restaurant and Cameron ate a couple of bites of my guacamole and really liked it, which is excellent news because avacado is the best calorie laden food you can give a kid. Monday we went to Mommom and Poppop's house for a cookout and had a nice time. The boys ate a little puree and licked a piece of hotdog too.

Yesterday, Monday, was our first day back and it was like we were only gone the whole weekend. But because of our week and a day missed due to illness they have pushed out estimated discharge date back to June 16th. This is good, and I would happily negotiate they keep us until mid-August if they wanted because I'm sure if we could continue with this intensive program we would see leaps and bounds of improvement.

But doing a program like this is exhausting, especially when there is a long and rough commute involved. If it weren't for the commute I think the boys would tolerate it better. The other thing that has been good for us is that the boys, especially Cameron, can count to 10 very well and know their body parts like mouth, teeth, tongue so they can understand basic commands like take a sip, touch the food to your tongue, kiss the food, touch the food to your teeth, etc. It was coincidental that we taught them these things before clinic, but what a lucky thing to have learned at the right time. While they may not comply, the therapists know they can work with an un-compliant understanding child as opposed to having to teach all those things and then try to make them compliant.

This is a painfully slow process to get the boys eating. But so far everyone at the clinic is confident they will be eating lots of foods very well by age 3. But the most surreal thing is to actually HAVE to go buy baby food because they are consuming it and not because we are just going through the motions to offer food that will be refused. They are eating. The boys combined eat about one ounce of pureed foods a day. That may seem like nothing to you, but it's everything to me. It's an ounce of puree food more than they consumed before. In fact, this morning Cameron ate 2.5 ounces of yogurt before refusing any more. HUGE!

So now I go to the grocery store and I buy six jars of baby food instead of two to last us three days. Pretty exciting, very surreal at the age of two.

And because I haven't posted any pics in a long time....

104.1

2010-05-21T20:39:00.002-04:00

Well. It has been a very eventful week, some very good, some very bad. And we are ending it with a whole bunch of bad. Today we went to "school" and Cameron was fine but Evan was in a very grumpy tired mood which I attributed to the copious amounts of drool indicating he was teething. He had a lousy time at breakfast, we gave him tylenol and he did better through lunch, napped for almost 3 hours, did pretty well at snack. The playroom staff told me that 4 of the 10 kids in the program were out sick today so there is definitely something going on. Just as I was putting him in the car for our long drive home I noticed he felt really hot. In the car he was lethargic and moaning the whole ride home until he fell asleep 5min before we pulled into the driveway. He woke up out of the car and we checked his temperature.

At 5:30pm I checked his temperature several times over 10min. It went from 100.1 to 101, to 102.3, to 103, and then 104. I gave the tylenol at 5:40pm and while he was very slow and definitely obviously not feeling well he was playing and talking and he even ate 25grams of puree zucchini. He refused milk but did drink a tiny sip of water. After dinner he had a temp of 100.1 again. And he was in good enough mood to sit with us and read two books before flopping down in my lap like a rag doll. He went to sleep immediately at 7pm and I just checked his temp again at 8pm and it's 101.7.

I'll wait till 9:30pm to give him ibuprofen. Hopefully this will subside and we won't be making a trip to the ER or urgent care.

I have lots to update from this week's progress, which really has been fantastic. But it will have to wait for now, I'll try to do an update maybe tomorrow.

If there is a Heaven....

2010-05-20T19:57:00.004-04:00

I am not religious. But.... If there is a Heaven then the pearly gates are particularly busy this week.

A week ago good friends of ours had their second baby, a boy named Finn. He's a beautiful full term healthy baby boy. ( I love that I get to type the words "full term" about people I know and care for.) Welcome to the world Baby Finn, your big sister Zoe has a lot to teach you. We are all so excited to meet you.

Two days ago my Preemie Parent friends Martha and Robbie had their second baby, sweet little Maggie, baby sister to Campbell who was a fellow 28weeker like my boys. All our Preemie Mom friends have been living every moment of this pregnancy vicariously through Martha, all of us waiting on pins and needles, with baited breath. Patiently we've been enjoying hearing of a woman truly reveling in her FULL TERM pregnancy with only a handful of scares from a possible reoccurrences of pre-eclampsia, which thankfully did not cause any complications. Welcome to the world Baby Maggie. We're so excited to meet you this summer!

But tragically the pearly gates swing both ways, and today my friend Tiffany lost her baby boy Justice at 20 months old. My heart beats with heavy sobs for Tiffany and her family. As of yesterday JW seemed to have been doing better with his breathing so today's news that he has passed on is devastating.

Please go hug and kiss your children one more time today. Life is so precious.

A New Old Trick

2010-05-18T21:29:00.003-04:00

Monday and Tuesday have been better, but we're still struggling at night with vomit and teething. And then there's the one hour one way commute that has been a bear in the rain that we're having this week. The boys however are really doing well. Cameron has REALLY grasped the requirement that he must accept and swallow the food offered on the spoon before he can have his toys back to play. Evan is much more stubborn but also is grasping the concept well so that he's now opening his mouth willingly three out of ten times. But it's still very slow going and requires at least two people to feed one kid with this protocol. We would like to see the boys increase the volume consumed per spoon (they take about a half a spoon each bite) and the number of bites they take to where they are consuming at least 80% of one smooth food item before we move on to more difficult textures.

One amazing new trick that I did not know the boys would do is take medicine by mouth. They have not been able to tolerate this since before they got their feeding tubes. Today the nurse told me that she decided to try it and see what would happen if she used the feeding protocol to administer .3mls of Erythromiacn and that it's worked every day for a week. I was stunned that it's working. In my mind the last test of getting off the feeding tubes would not just be that the boys could show they were getting enough nutrition by mouth for up to two or three months before removal of the tubes, but that they would also have to tolerate taking all their medicines by mouth as well. Erythromiacn is a very smooth medication that is bubblegum flavored so that's part of the reason that the boys are able to take it. If it were Prevacid they would have more of an issue with it because it's a difficult medication to administer since it's a soluble tablet which is something the boys can't tolerate, and if we were to dissolve it the granules would be too much texture for them and they would gag and likely vomit because of the gag reflex. We used to give Prevacid by mouth when they were very tiny so I'm very well versed in all the ways you could possibly administer this medication and I'm pretty certain that we are a ways off from giving that by mouth. But it's very promising that they are willing to take the Erythromiacn by mouth.

Still Wonky

2010-05-16T19:56:00.002-04:00

Sunday the boys woke up at 5:30am and were in pretty good moods, if not a bit whiny. They flat our refused to eat pretty much anything other than to drink some milk, though nothing outstanding. It was pretty much a huge frustrating battle all weekend long,and even though I did have some great meals for each kid, they really made me work to get it in them. At least the only vomit today was from Evan gagging after I put a sneak attack spoon full of butterscotch pudding in his mouth. Last night was rough, for some reason Evan pooped and woke up from it at 9:30pm which made the poor kid restless until he finally fall asleep at 11:30pm. Also, this morning they crashed at 9am, Evan for two hours and Cameron for only one hour. They went to bed tonight at 7pm and hopefully they will sleep like angels and wake up when we are on the road and halfway to school tomorrow morning.

Cross Your Fingers!

2010-05-15T20:08:00.002-04:00

Today the boys woke up cranky again at 5:30am. They were very combative when I tried to feed them breakfast, though they drank about 1oz of milk each. Cameron did throw up more clear stomach fluids, neither had a fever, runny noses have somewhat subsided, the guys looked like they felt miserable, and both boys went down for two hour naps at 8:30am. They woke up and Drew tried to give them lunch which was a miserable experience. Then Cameron went back down for another nap at 1:15pm and slept until 4:10pm, while Evan was a fireball keeping Drew on his toes all day. Drew tried several times to get Evan to take another nap, but Evan did not think that was such a hot idea. When Cameron got up he told me very clearly that he was hungry and wanted milk (pronounced "Mick"). I gave him 4oz of milk and he drank it all in under 30min while watching The Backyardigans. Then he told me he was hungry and I tried to feed the boys dinner around 5:30pm. He drank another 3oz of milk, ate about 20grams of Chicken & Stars soup (this may not seem like a lot but it was baby spoons loaded with actual noodles, carrots and celery and not just the broth by itself which is usually all he wants), and 4 veggie sticks. Evan drank about 16 baby spoons full of the Chicken & Stars broth which is more than he's ever had in his life, but fell asleep mid-sip of broth on the 16th one. He drank lots of milk today too, about 5oz which is a lot for him. Since Evan went to bed at 6pm we kept Cameron in his highchair playing with a toy while we adults ate dinner. He demanded more milk and drank another ounce plus ate three cheese puffs.

There's something to be said for a stomach virus and a 5 hour nap. It makes a toddler eat more than he's ever had in one day. Now he's finally asleep by 7:45pm and has been on his feeding pump at a very slow rate since 6pm. Please cross your fingers that he doesn't upchuck everything tonight.

Update to Day 13

2010-05-14T20:19:00.005-04:00

During lunch Evan told me "Head boo boo" and was whiny and rubbing the sides of his head and generally very obviously feeling miserable. Cameron kept asking for Night Night so I put them to bed after giving them both some Tylenol. Cam slept for another three hours (in addition to the 40min the boys both slept on the car ride home), while Evan became hyper and pooped and became even more hyper. Once I finally got Evan down for a nap at 1:30pm Cameron woke up at 2pm. When Evan woke up he had big red splotches all over his face and lots of little red pin-prick dots on his back and belly and behind his ears. Neither boy had a fever or was acting very differently from normal. We gave them a bath and noticed Cam had a few red splotches showing up on the side of his face too. That's when we decided to give them some Benadryl before bed. Within 10min we noticed the red splotches fading. We've gone over and over and over the day's activities and what they might have consumed (nothing measurable for sure) and can't figure out what could have caused the reaction. Guess it's just as well that we came home today.

We're having a really bad thunderstorm tonight. Our two beasties are scary if you don't know them, but have a thunderstomr come rolling in and this is where one of my large hairy chickens likes to perch for her safety...

Day 14 - Oh no!

2010-05-14T12:31:00.003-04:00

Last night both boys vomited in their sleep at the same time with no warning for us. This is not uncommon so we didn't think much of it. Then this morning Cameron was grumpy when he's usually a chipper morning person. He screamed a couple of times like he was gassy, and then he puked a handful of stomach fluids with big green loogies (sorry for the TMI). I checked his temp and he was fine no fever. I checked Evan just because he was right there and he had a teeny tiny fever of 99.4. But they seemed to be doing fine so we loaded up in the car and left for "school". During the ride Evan was a chatty thing that could not sit still, very unusual for him because like me he's not a morning person. And Cameron, who is usually loudly pointing out every.single. truck/school bus/train/plane, was trying to fall asleep but struggling to do so because Evan was keeping him awake. Not five minutes away from the feeding clinic parking lot and suddenly with no warning Cameron puked lots of clear stomach bile (not the really nasty green stuff we used to get, but it did smell like it). Once we got into the building the nurse took their temperatures again and we agreed with the Director of the program Dr. Katz that it didn't appear that he was ill, just really having a rough day and didn't want to be there. So we decided to see how breakfast went and then if it didn't go well I would take them home to rest for the weekend. Cameron barely got out of his stroller and even laid down on the hallway floor in protest of being at school, which he never does. We then changed the plan so that Evan would get fed breakfast and I would take Cameron to the cafeteria to wait out the traffic before heading back home. The whole time in the cafeteria poor Cameron just wanted to snuggle in my lap.

We picked Evan up after his very unsuccessful breakfast and headed home. The boys fell asleep for about 40 min until we got home around 10:15am and I let them lay on the floor and watch tv for about 20min and then got things ready to attempt a lunch since they haven't eaten since midnight last night. I got as far as setting up the highchairs when Cam threw up again and asked to go night night. Evan had become more and more fussy and started telling me "Boo boo head, boo boo head" and rubbing his eyes and sides of his head. So I doped them both up on some generic Tylenol and Cam went to sleep at 11:30am and Evan pooped, so now he's refusing to nap but is happily playing in the playroom and watching Dora while his brother gets his nap.

Hopefully this stomach bug Cam has is over quickly and Evan doesn't catch it. And that we can get back to the feeding clinic to pick up where we left off. I was so looking forward to getting the boys to school today to reinforce the great day they had yesterday. I guess it was not to be...

Day 13 - Hands Down Feeding

2010-05-13T20:11:00.003-04:00

So as of today Cameron has had six sessions of the more aggressive method of positive reinforcement feeding. This is where they present him with a toy or tv and then take the toy or tv away and say "Time to take a bite." and hold the spoon to his lips while someone else holds him in place from behind so that he can't use his Ninja skills to swat at the spoon or thrash his head from side to side. He has the choice to keep his mouth shut or open it up and eat the food. If after a minute he still refuses they let him go and remove the spoon and change the mood to redirect his attention to something pleasant and then re-present the toy or tv show that is of most interest and try again. BUT if he does give in and open his mouth and swallow the food he gets the toy right away with lots of praise and the hands preventing him from escaping or swatting are instantly removed. This method allows us to provide him with an opportunity to make a choice without having his body instinctively react preventing him from ever getting a taste to learn if he likes and can deal with the food in his mouth. Basically it's stacking the deck in our favor so the only thing the child has to do is make a choice. Either way he gets praise and if he makes the right choice he gets a reward. Eventually he would associate eating with pleasure and reward and there would be no need to do anything but offer him the food to eat and he would eat it. Easy enough, right? ;-]

I asked the psychologist how do they know if this method is working and he said that the first sign is you should begin to see a decrease in the amount of time between when the spoon is presented and the mouth willingly opens. Then everything after that should follow through. If it didn't work the child would always refuse to open his mouth and he would continue to be upset about just one attempt of this for a long time afterward, even if ten minutes has passed since the attempt and you've moved him into a different room. The doctor felt that with my boys and in most kids you will typically see improvement after about 6 to 8 sessions of this method.

Last night at the dinner time feeding at home (he'd had his first three sessions of the Hands Down method during the day at feeding clinic) he was very upset, very frustrated, almost angry. He was flinging food and yelling and in general being far more uncooperative than usual, refusing pretty much all the food other than a few tastes but drinking a whopping 4oz of milk. Periodically he would say "Applesauce!" over and over, which was the food they had been feeding him at snack time where he'd fought them the hardest so I think that he was reminiscing about his day and telling me he remembered what happened.

Today I did not get to watch Cameron's breakfast because he was in a room without an observation window, but I was told later on that he ate four bites of yogurt without being held and even took a couple of those bites by handing back the toy and leaning forward with his mouth open! :-O

At lunch I missed out on watching a near perfect feeding session for Cameron because I was sitting in a parent chat session with some other parents of kids in the program. That was a really great chat we had and it was so nice just talking to other parents who have been where we have, who are struggling with the same issues we are, and who are at different stages in the program, one of whom is back for a second go around after a previous 9 week session that was tremendously successful and they are hoping to accomplish a bit more with this session.

During lunch Cameron only had to have his hands lightly touched and he willingly at every single one of his ten spoons full of mashed potatoes and gravy. :-D Again, on a couple of instances he even handed back his toy and leaned forward with an open mouth for his next bite!!!!!!!!!!

At snack time I think he was feeling a little cranky because he had to be held four times, but then began to willingly take the offered food and never lost the option to play with his toy. So it's okay now, you can go ahead and cry. I was sobbing. I am sobbing. It is working.

Evan is having a much more difficult time of it today, but I am keeping in mind that today was the very first time we've ever attempted this Hands Down Method that we are doing with Cameron. And Evan is definitely the more difficult one to convince, he's so stubborn and determined. And he has a much stronger gag reflex. My poor little Dragon.

But... BUT BUT BUT BUT.... At dinner tonight both boys ate! And I mean more than my sneaking in a spoonful while they are distracted. I simply presented an item they wanted just out of reach, said "Take a bite." and like a little bird Cameron opened up and ate six full baby spoonfuls of mixed veggie puree before eating four Gerber Lil' Crunchies Cheddar Cheese Puffs and then three spoons of butterscotch pudding. Evan was more difficult and he fought my holding his hands down (very difficult to do by one person who's also trying to get food into his mouth). But he did actually willingly eat four baby spoonfuls of the mixed veggie puree and two of the butterscotch pudding.

They are eating!! My boys are eating!! I can not wait to take them to feeding clinic tomorrow.