Another Hollow Leg Day

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

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

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

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

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

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

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.