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Wednesday, January 27, 2010

BIG NEWS!



I think that it is safe to officially say out loud to the general public now that the boys are finally Sleeping Through the Night. They go to bed between 6pm and 7pm and get up like clockwork at 5am and no one makes a peep all night long. It's a beautiful thing. Hopefully it will improve with them sleeping at least until 6am on a regular basis, but for now we're pretty happy with the way things are going. It's going to take Drew and I a very long time before we feel like we've finally caught up with our own sleep, but it is much better now.

And now for the really big news:



Evan has officially been discharged from Physical Therapy!

Because he has met his gross motor skills at an appropriate level within two months of his actual age Evan no longer needs Physical Therapy services. At his discharge we went over the last six months because it was the regular six month re-evaluation of services to see if the boys have reached their goals and for PT he's right on track. Six months ago, at the age of 16.5 months actual age and 13mos adjusted age, Evan's gross motor skills goals were to roll over in both directions, push up on his arms to a crawl, rock back and forth while in the crawl position, sit up unassisted, and pull to a stand. Two months after that evaluation was written Evan was pulling to a stand, free standing, and walking across the room without assistance. Today he actually got air under both feet at the same time while jumping, attempted to do a somersault on his own, climbs on furniture, crawls through long tunnels, and runs at every opportunity even if it's only to go a few feet. He can do anything that a kid his age should be doing, with the exception of things that are just not within his reach or at a height to tall for him because he's still very short for his age (in the 10th percentile). He got a little award from his PT and a sweet note congratulating him on all his hard work. I love Miss Linda, the best PT ever!

Evan is continuing to get OT services every week and will add Speech Therapy services twice a month because while he's saying words, he's not imitating as much and as frequently as we would like to see, and is also allowing Cameron to speak for him which delays him further.

Cameron has been discharged from both Physical Therapy (back in December) and Speech Therapy for the purposes of communication but not for the feeding aspect though the OT will work with him on communication as well.

We are no longer going to be getting ST for communication because if you've read my earlier posts about all his new words, there is no concern about his social skills and his ability to communicate, either by talking or gestures and signing. He's a veritable chatter box and sponge.

Both boys are eligible for continued EI services after the age of three, for right now based on their current track, and we are very lucky to live in the county we do because there are a whole lot of programs to participate in that are free and fun and very close to home. And both our OT and ST will be visiting the feeding clinic with us to observe the techniques that are used so that once we graduate from that program we can continue to work with the boys on improving their ability and desire to eat.

It's been such an incredibly long road and I am overwhelmed with the emotions and exhaustion we have all been dealing with from the last 20 months. I was sure for the longest time that there was irreparable damage done to them from their prematurity, and while we're still not sure of that, we are sure that they will walk and talk and interact in society on a normal scale without concern. It's one huge boulder lifted off my shoulders. More Happy Tears.

But to cap off a good day, I got to listen to Cameron talk himself to sleep saying "Mommy. Tahm-ron. Eban. Daddy." over and over. So incredibly sweet, especially since he gets confused when we ask him "What's your name?" and he responds by patting Evan's leg saying "Tahm-ron." then patting his chest and saying "Ebon." Still not exactly sure what his name is. LOL!









That was then... Fresh from the NICU and we were pre-bottling the boys food for the next 14 hours. Each bottle had to be meticulously labeled for each specific feeding for each baby and all the different medications they were on. Literally every bottle was different.


This is now... We've switched the boys from Neocate to Peptamin Jr premixed formula. It comes in cans which totally brings back memories from when the boys were little and had just come home from the NICU and eating 2oz every 2hours.



My poor little sickos sleeping peacefully.









Since the boys were sick we've had a complete setback in their willingness to eat and put food in their mouths beyond milk. And even the amount of milk they consume is much less now too. On Sunday night we went out to dinner to Red Robin and I let Evan have my fork covered in blue cheese dressing. He put it to his lips and must have liked it because he refused to give up the fork and attacked it when I put more dressing on it. I had to take a picture. But then we noticed that his face was turning splotchy and bright red and his left eye got a little puffy.


This is what it looked like about 30min after he'd eaten and smeared the teeny tiny bit of blue cheese on his face. It was completely gone about an hour later. We've decided that this was just a topical reaction to something in the blue cheese dressing and it seems to be pretty common among other children, especially with ranch dressing. Honestly, if he wants to eat it, then I'll keep giving it to him. I'll just keep a washcloth handy.




And here's a video of Cameron sampling the chocolate milk from Drew's Coco Pebbles cereal on Sunday morning. It's a beautiful thing.

video

Saturday, January 23, 2010

Trying to keep up with Cameron

Cameron is a veritable parrot these days. I am having difficulty now remembering all the new words he's imitating and saying correctly. I know I've missed a couple in this but here's what I can remember from the last three days, probably some are repeats and not actually new.

Cracker
Knee
Hair
Neck (Neh)
Cheek (Chee, often confused with Cheese)
Cheese
Kitty Cat (Kit-cah)
Meow
Cow
Pig (Pi-eh)
Elephant (eh-fan) with accompanying trumpeting and arm movement
Zebra (see-bra)
Turtle
Sun
Moon
Ball Pit
Hand (han)
Scoot (skooooo)
Spoon (spoooo)
Fork (fooooor)
Kiss me

Thursday, January 21, 2010

Getting Out

I took the boys to a local mall yesterday to return some things. We went to the food court for lunch. This is always a bit of a nightmare not just because we have feeding issues, but this mall is always PACKED with people and there are never any good seats to be had. But today I scored and it was the most pleasant outing we've had in a very long time. Here's why....

1. An older lady maybe in her 70's came up to me to ask about the boys. She smiled and said "Twins? They're not identical, I can see some differences besides their sizes." (Most people don't even notice their size difference, so this was neat.) "I have identical twin grandsons who are teenagers now. Let me give you advice that my daughter, their mother, came up with. And don't worry, I know mom's don't need advice from strange old ladies, but you might like this idea. When they are older they will fight over which restaurant they want to eat at, McDonalds or Burger King, and it will be a nightmare because someone will be upset, and so will you. My daughter decided that the boy who was born on the odd minute (ie. 2:33pm) would get to make the final choice of restaurant on the odd days, and the boy who was born on the even minute (ie. 2:34pm) would get to make the decision where to eat on the even days. And their mother would get the final decision on the 31st of every month. Solved that problem, and many others." When I asked her when did the Dad get to decide where to eat she said "Why does he need to decide? He's not the one dealing with them every day!" I liked her a lot.

2. We found a table but I was struggling to find high chairs. There was a table across from us with a group of moms and their babies having lunch, one of them had twins. The twin mom got up and asked me if I would like her to go and get the highchairs for me so I wouldn't have to leave the boys alone. She said that she had help with her but if she had been alone it would have been one more thing to deal with, so she needed to help a fellow mom of multiples out. I liked her a lot.

3. At the table next to us was a very old frail lady, maybe in her 80's eating lunch alone. She asked if they were twins, were they fraternal. Then she said, "I am a twin too. But my twin is my brother. You would be amazed at how many people still ask us to this day if we are identical. So stupid, don't you think?" I busted out laughing with her. She shared a few stories with me about growing up with a twin while I tried to feed the boys. She said that it was a big deal in her small town to have the only twins. That her mother never left the house until they were 3 because there was no way back then to carry twins around and they didn't have a car. I liked her a lot too.

Wednesday, January 20, 2010

Recovery & More Words

This past week and a half the boys have been very sick and it turns out my hunch was right, they probably had/have the dreaded RSV. Thankfully they don't seem to have caught a bad case, and while I did hear significant wheezing in each boy, it was only at night or early morning and during the increased reflux attacks caused by the post-nasal drip. It's really just a wicked horrible cold, but RSV is a tricky bastard that within a matter of just a few hours can mean a trip to the hospital. Only Cameron really struggled with it enough at the doctor's office, we couldn't get his pulsox over 95% no matter what we tried. So he needed Abuterol steroid inhalant nebulizer treatments (which he HATES) and some oral steroids. It's not surprising that Cameron did a good bit worse than Evan considering the trouble he had learning to breathe, and we had been warned by the pulmonologist that this would probably happen, and my in fact get worse as he gets older and comes in contact with worse variations of this virus. Poor Evan was the one who got sick first and while he was miserable he recovered after only four days. Both boys will still have a wicked cough for at least another week I think.

During our doctor's visit the boys got hysterical when we stripped them down and weighed them and took their temperatures. You'd think we were stabbing them. But the poor things have been through this way too many times to not always assume that something painful is about to happen, so I don't blame them for being upset. But in his new fashion, Evan told both the nurse and then the doctor several times "Bye-Bye!" and gave them a very dismissive wave of the hand. It was very clear that he wanted this to be over and done and the nurse and doctor to be gone.

NEW WORDS
Cameron is now repeating much more of what we say so it is getting trickier to know if he is really using the word or just imitating, but every day he uses everything in his repertoire that he can. This morning when he woke up he screamed "Oc-pus!" for his toy octopus, then screamed even louder for "Mommy, Daddy, Eban (Evan)". Some of Cameron's other new words:

Beads
Water
Car
Cup
Chair
Hot (But this is used in the context of do not touch)
Open
Close
Ah-choo
Feet
Elbow
Hair
Chin
Mouth (pronounce Mowf)
Teeth (pronounce Tee)
Glasses (pronounced Gahss)
Hug (more specifically he says "A hug.")
Night-night (pronounced Nigh-nigh)
Bells
Owl
Shoe
Sock (pronounced Sah!)
Tunnel
Knock-knock (pronounce Nah-nah)
Me
Mine (but he doesn't know how to use it to say that "something is Mine")
Cameron (Pronounced Cah-mon, but he does not yet understand the question "what is your name?")
Banana (pronounced Nana)
Hot Dog

One other adorable but odd thing that he is doing is carrying around one yellow rubber boot. He totes it around the playroom, refusing to put it on his foot but knows exactly that that is where it goes.

Evan
He's babbling non-stop now. He's trying to say stuff but he's so busy doing the talking that he's not really saying a whole lot of words very clearly as they get mashed up in all the babble, but they are there if you listen carefully.

Water (pronounced Wha-wa)
Up
Down (pronounced Dow)
Open
Closed (pronounced Opeh)
Nose
Eye
No
Elmo
Dog (pronounced Dohg)
Knock-knock (pronounced Nah-nah)
Mommy
Daddy

We have a new bed time routine that really makes us laugh. We've been reading the book "Cornelius P. Mud, Are You Ready For Bed?" by Barney Saltzberg. We often add in our own questions to the boys about what they need to do to get ready for bed. Each question is answered by Cameron with a resounding No or Yes as appropriate, while Evan gives big goofy grins and rolling his eyes as his response. At the end of all the questions we ask "What else do you need?" and Cameron's response is always "A hug." and then we all hug. At this point Cameron points to the door and says "Nigh-nigh" and we all march upstairs and put the boys to bed with no more tears, no vomiting, no anxiety, no arching of backs, etc. It's a beautiful thing.

Monday, January 18, 2010

Happy Birthday Baby Anthony!


Welcome to the world baby boy Anthony C., born today 01/18/10 weighing in at 6 lbs 4oz. Your Mommy and Daddy are so excited to have you finally here. I have not had a chance to meet you yet, but already I can tell you are the sweetest dream of a happy healthy baby because you baked in your Mommy's tummy for a healthy and uneventful 38 weeks like a good boy, and delivery was very easy for your Mommy (for which she thanks you very, very much). We have all been so excited for this day, and are looking forward to many play dates and fun times ahead.

Congratulations to one of my longest and dearest best friends forever, Y & C. We love you all!

Love,
Laurie, Drew, Cameron & Evan

p.s. Remember to shake the boobies! ;-)

Thursday, January 14, 2010

De-Lurking 2010 with a Q&A


One item of business: This week is De-Lurker Week in the blogger world.

What is a Lurker and why would I want to De-Lurk them? A Lurker is someone who follows and reads your blog but may never post any comments. Some people are old friends, family, people I know but have never met in real life, and others are people that stumble on my blog because they are searching for someone like themselves or with similar experiences and have questions, or just for the love of reading blogs. I keep my blog open to the public because during my pregnancy complications I wanted to find people who had experienced what I was going through and could share how they dealt with the many decisions and hurdles we've had to make. Along the way I've found an amazing support group of people and have received some wonderful feedback. I know I have helped people who've had micro-preemies, people who have kids coming home on an oxygen supply, kids who have feeding tube issues, and other parents of multiples, so I feel like maybe I'm doing something small but good for someone out there. It's the only way I can think to repay the kind favors that others have done for me in the same fashion.

So with that, I learned of De-Lerker week from my friend Sara over at Twice As Nice and so I'm jacking her post idea and throwing in the Q&A too. Thanks Sara!

To everyone out there: Here is your opportunity to step up to the mic and show yourself. Don't be shy! I would love to hear from every one of my regular readers this week, especially if you don't usually leave a comment. Just leave me a little love (aka-comment). If you don't have a Google account, that's okay, you can leave a comment anonymously. But it would be much appreciated if you could just sign your name so I know who you are :-) If you have a blog, I will come give you some blogger loving back too.

And for something new, I'd like to combine this post with an answering question session. I have never done this before so I know you all have lots of burning questions you want to ask. Maybe things like: How are you not completely insane? Why are you never in the pictures? Where did you get those shoes? Are you aware your kitchen floor is gross? How many vomited shirts do you go through a day?

Anything is up for discussion, I'm a pretty direct and open person.

So come on! De-lurk! Just stop in to say hi! Ask me anything! 'Cuz seriously...

Hanging in There

Not much to post about us because well, we're still sick and not going anywhere. Now Drew and I are sick with sore throats and runny noses. Other than that, Evan is very much on the mend and Cameron is still in the thick of the illness. As long as it doesn't get worse, we'll be just fine by next week. It does mean that we won't be going to the Playseum on Monday with all our Preemie buddies. We'd been really excited to go there since we haven't seen the whole gang in a while and it would be so much more fun now that everyone is able to run around on their own. Also the Playseum is new and full of great activities for toddlers who have lots of energy to burn.

Cameron's New Words -
Oh dear!
Oh no! (He uses this one A LOT!)
Evan
Car

Evan's New Words -
Up
Down

Evan's babbling has increased and now he's mixing up his consonants and vowels like he's saying sentences in baby language. We had a particularly fun lunch date this past weekend with our friends The Squeaker and The Pipsqueak where the boys really seemed to open up, especially Evan. Evan got to sit next to his buddy the Pipsqueak, who is about six months older and very advanced in his language. They had a blast talking and laughing, smiling and about who knows what. The peals of laughter from that end of the table were priceless, but every time I got the camera going they would stop. Stinkers! I'll capture your cuteness yet!

And Cameron was being loved up by the Squeaker who is almost six. Squeaker has such a big heart and desperately wanted Cameron to interact with him the way that Evan and his brother were interacting, but Cameron was not in the attention giving mood that day. But I give Squeaker props and encourage him to keep trying, the boys just need a little time to warm up to big kids because they've never gotten to be around very many. Once Cameron sees all the cool things you can do he will follow you like a puppy dog.

Sorry, I've got no pictures to post right now. But hopefully we'll have more very soon. The boys are mostly just laying around, zombified by Elmo, sneezing and coughing and vomiting. It's been very rough at night because post nasal drip really causes havoc on our refluxers. They don't give us much warning before they start puking in their sleep. I've got to go now, someone is about to let one rip now, and I've got to get more laundry in the machine.

Tuesday, January 12, 2010

RSV

Took them this afternoon and she said that they do have some wheezing, especially Evan and that she thinks the worst is not over for Cameron yet. We are on a wait and see mode since at the visit they were screaming hysterically like they always do when you go to the doctors and she felt they couldn't be that bad off if they were screaming that badly. It took about 30min of us sitting and chatting to get them to calm down enough for her to get close enough so she could listen to them while I distracted them with toys and books and acting goofy. I love our pedi, she understands what the boys have been through and doesn't take it personally.

We were going to do breathing treatments tonight and tomorrow, but only if they seemed like they needed them which at the moment they are doing really well. The doctor also said to give them a very small dose of Benadryll to help dry the sinuses up a little in hopes of letting them get some sleep and prevent more post nasal drip from causing a gag reflex and increase in their already copious amount of vomit. Now I have to figure out how to give it to them by mouth because it will work better that way. I'll only try so hard and then give up and put it in the feeding tube.

Evan was very vocal about his displeasure at being at the doctors office. We haven't been there in two months since their 18month shots and prior to that we hadn't been there since their 15mos shots, so it was impressive that he knew where he was. All the way down the hall to the entrance he was saying bye-bye and waving. When the receptionist said hello to the boys (we're kinda famous there) he waved and said bye-bye with a pouty lip which cracked the front desk girls up. Evan was not amused. Then he did it again to the nurse who checked us in with weights and temperatures, and then again to the doctor while we were chatting. He was making sure EVERYONE there knew he wanted to leave. Cameron just shivers and shakes, screams and cries while clinging to me like a little monkey. You'd think they were being stabbed to death when I take their clothes off and weigh them and get the temperature. The nurse never even touches them.

Here's some pics from this past week:














Monday, January 04, 2010

Better and Better

We just finished up a double OT and Speech therapy session and the boys both did great, awesome, stupendous, and magnificently. My babies can eat food, find pleasure in putting things in their mouths that is food, and are social while doing it. They opened their mouths willingly, they bit and chewed crunchy foods. They dipped their Nuk brushes in applesauce and blueberries and then shoved the damn thing in their mouths happily many times. And they were sooooo talkative. They used words as well as sign language, had an argument between themselves in front of the OT therapist and the Speech therapist and resolved it themselves. Evan told me he had an owie and that baby needed a hug all with gestures and sign language.

Now they are down for hopefully and probably a very long nap and then we are off to the grocery store for another adventure.

Yes, Virginia, there is not one single iota of doubt in my mind that there really is in fact a Santa Claus.

My Chair!

Today while waiting for our EI OT to arrive the boys were climbing in and out of their booster seats I had set up on the floor in front of their big mirror. Evan decided he wanted to climb in the chair that Cameron was using at the time. Cameron stood up and started screaming and whining and pushing at Evan. I told Cameron to tell Evan that it's my chair and to use his own chair. And he repeated with a very serious look at Evan "My chah, own chah Evan!" and pointed at Evan's chair.

Hells yeah! WE HAVE OUR FIRST FULL COMPLEX SENTENCE!

Saturday, January 02, 2010

Kicking: Take Two!

We're on a roll folks!

Today we went to probably the noisiest, most crowded mall on the planet to return and exchange some Christmas gifts. At lunch time we sat down in the food court to have our lunch and attempt to feed the boys their solid foods. This never ever goes well when out in public, especially in noisy crowded places. But today was different, hopefully the continuing strong trend for the new year. I presented several spoons full of the same applesauce and blueberries to Evan and he opened his mouth willingly, leaned forward and ate them. I think I counted about seven baby spoons worth which is about a teaspoon of "solid" food. This is more solids from a spoon than he's ever eaten in one sitting. Cameron would have nothing of the applesauce and blueberries but loved dipping the spoon into the container and then shoving it in my mouth. He did try to taste it once, but I guess he just wasn't feeling it today.

But when I pulled out the Baby MumMum's he was all over that! He snatched his peice out of my hand. He would nibble and lick and smear the rice wafter all over his lips which was a shock for a kid with such texture aversion. He big chunks off over and over and over, chewed and swallowed and never once gagged or refused or became upset. He never threw his food on the floor and he never got upset at his food. And when he was done and didn't want the last tiny piece which was no bigger than an M&M candy he put it in the palm of my hand and very clearly said "Ah-done". Evan too was very interested in his Baby MumMums and ate several bites between offering his piece for Daddy to take bites of, and then snatching it back to crush tiny crumbs with his front teeth.

And when the boys saw us drinking our sodas from a straw they HAD to have them. As in they would scream and fuss and kick and push everything else away until we let them have our cup of soda. Neither baby liked the soda, mine was Coke and Drew's was Sprite. Both boys took sips, made the worst face and looked at us like they were thinking "Wow, you really drink this shit?" and then tried it again and again. They also drank about three and a half ounces of whole milk between each of them, and at least an ounce of water during our lunch too, An impressive quantity for them combined in less than an hour of sitting at a meal.

And to add the icing on the cake we had the pleasure of running into our good friends Tim, Jodi and their adorable daughter Zoƫ. It was cool running into them but what was even cooler was that they got to witness the beauty that is Cameron and Evan happily putting food in their mouths.

Then after a long day of shopping we headed home and picked up some *ahem* "yummy" Taco Bell for dinner for Mommy and Daddy. Cameron had have my quesadilla and then so did Evan. It was all I could do to keep them off my food!! I gave each boy a little teeny tiny piece of soft tortilla. Evan would not put it in his mouth and threw it on the floor. But Cameron promptly placed his peice in his mouth, took a bite, chewed and swallowed without so much as a grimace. Then Cameron let me put another teeny tiny piece in his mouth with my finger. I know, it's amazing, and more amazing that he opened his mouth and leaned in for more from me.

After those bites all the boys wanted from me was my glass of water, which Evan promptly dribbled down the front of his self and on to the floor. But that's okay, because no one threw up today and they both ate like champs.

Cameron's New Words:
Mommy, See You! - Meaning "Mommy, I can't see you!" when I leave his sight.
Hot Dog - Hah Dohg
Bathroom

Evan's New Words:
Bubble
Go - but not using it in the right context just yet.

We're rollin' rollin' rollin'.....

Oh and here are some belated Christmas pics.

We like to use the drum to stand on and reach lots of things that we shouldn't reach.


What you don't see in this picture is the drum stick in Evan's hand that he is getting ready to whack Cameron on the drum/head with.

Thank you MomMom and PopPop for the Fisher Price CD players. I didn't think the boys would play with these too much but it's a darn thing we got two of them!! And our scooters too, they're awesome.

It's a really good thing Santa brought the boys the wall mounted TV and DVD player combo, because while we were sick for four days Elmo was the only thing that anyone wanted to do.


Thank you Aunt Donna for our bears! We love them, they snuggle us at nap time every day.


Santa also brought a great set of musical instruments including a drum. He gave the boys a set of play food too, which has been lots of fun learning all the new words and pretending to eat food.


Want to add 10min a day to your playroom clean up time? Get a ball pit!
The boys LOVE the ball pit that Santa brought them.

Following in Daddy's Etch-a-sketch art skillz.




Evan's first self portrait shot.