*there's Christmas 2011

We spent Christmas 2011 in Pennsylvania! Will got to meet several relatives and friends for the first time. He got lots of fun gifts from everyone - lots of Elmo and Mickey Mouse Clubhouse stuff as well as cars, a kitchen, and a choo-choo!

Will and his new Hokey Pokey Elmo

Will and Uncle Matt

Will and 9 year old cousin Jake (also a preemie - can't you tell?)

Will showing Uncle Matt how to work his phone.

Jumping on the bed as Jake runs to join him

Will thought "Jayt" was hysterical

Trying on Jake's shoes

Will and his Nana

 

Squeezing in another quick visit with Great GrandPop to get some pictures made together

Will didn't understand the importance of getting this done since we can't see Great GrandPop very often. He was really, really tired!

Finding buttons to push at Great GrandPop's house cheered him up some

More buttons to push on this "Mote"

Happy enough for a picture now

In the next 4 minutes I will be asleep in the car on the way to the airport...

Will and I were both sick during the trip. When we got home his doctor declared he had bronchiolitis and an ear infection. We started antibiotics right away and he was better really quickly. Maybe the next time we go he will be well and have more of an appetite. Then his Daddy will be able to introduce him to all his favorite foods from home - ring bologna, cooper sharp cheese, red beet eggs, and Philly cheesesteaks.

*there's Santa

One Saturday this month Will's school had a Christmas party and he got to see Santa! We tried to prep him by making him a Portable North Pole video of Santa talking to him. It seemed to help because he wasn't scared...but he also didn't like Santa enough to sit with him by himself either!

 He also got to see a puppet show and make an ornament that day. 

Then Santa came to visit again during a weekday party.

I guess he wanted to see what that coat felt like.

No thanks!

Since he has seen Santa in person twice and has seen him in books, on t.v., and in some of his new toys he is now a Santa fan. If he hears a "Ho! Ho! Ho!" anywhere he smiles and says "Santa!".

*there's inspiration through art

Back in August we had pictures made of Will by Kristine Neeley. He was granted a photo session through an organization called Inspiration Through Art that connects children with serious illnesses to volunteers that provide cool things like professional photography. I applied to the program and when I learned he was accepted I got to look through a list of photographers that have volunteered to take pictures of kids. Luckily, I found one that was nearby (Franklin) that took just the kind of pictures I was hoping for. It is one thing to be kind enough to volunteer to offer your services for free, but it is quite another to be this incredibly talented and be able to capture a typical afternoon in the life of Will so perfectly.

Kristine was really great and I can't recommend her or Inspiration Through Art highly enough. Go here to read her blog post about the session and to see some of her favorite shots from the day. Below I have copied some of my favorites. I am just now showing them because I have been planning all along to use one for our Christmas card and I didn't want the picture to be old news by December. Here are several of them and I'll have more in the future.

Weight Gain update: Will has had a virus with a fever that lasted several days. He doesn't eat much when he doesn't feel well so I didn't even check on how much he weighed this week. I forgot that last winter went this way too - weaning attempts being stalled over and over for each illness he caught. It can be discouraging to remember that Will is still close to the same weight he was in June of this year. On the bright side he has definitely outgrown the SuperWill shirt he is wearing in the pics above!

*there's his visit to West Tennessee

Over the Thanksgiving holiday we spent time with my side of the family. Will got to meet some relatives and family friends for the first time which was fun.
These shots are from his trip to his Granddaddy's farm. He LOVED the cows!

More pictures to come!

*there's week 2 of the appetite stimulant

It's working! Will was weighed Monday which marks 10 days of him taking the new medicine. He was 22 lbs exactly. Will has been heavier than this before but as I mentioned recently he lost some weight due to him being sick for awhile. He also doesn't eat as well when we're traveling. New environments are so much fun that eating is no longer his first priority.

He has continued to finish off quantities of food that are not typical of him. Sometimes it is only 8-10 bites of something but in the past that would have been 3-4 bites. Not an average 2 year old yet but it is more than double for him! Just seeing him eat ALL of something, no matter how small is so new to us. A whole cereal bar. A whole chicken tenderloin. Replenishing a finished cup of milk. Emptying a cup of snacks in the car.

The nurses at day care say that he eats during meals AND if anyone is eating near him at any other time of day he asks for their food too!

He has become a scavenger.

And we're only at stage one of the dosage.

Insert standing ovation {right here}.

Other notable things about Will's eating:

*he spoons up the salsa at Mexican restaurants as if it were soup
*he loves pizza and pasta and peppers as much as his Daddy
*he likes foods that his Mommy only hopes to like one day. Pesto flavored hummus for example. I mean, I'll eat pesto but I don't really like it.
*he will help salvage a meal that isn't going well by cooperating when his mother resorts to scooping peanut butter out of the jar with a spoon
*he finished his I-need-Ranch-dressing-on-everything phase over the summer, thank goodness
*he calls yogurt "Dora"
*he has no idea that the Dora he eats is so rich and delicious because I stir Carnation Instant Breakfast into it to give it more calories.
*he doesn't really care much for sweets or ice cream (so far)

 

 

 

Will eating recorded by Kristine Neeley Photography in Franklin, TN

*there's day 1 of the appetite stimulant

First, part II of the month of check ups: last week we saw the pediatrician again. It was an uneventful trip - we just got clarification on the wheeze we hear sometimes when Will has a cold or virus. He has an inhaler with a spacer that he loves. Sometimes he pretends to give himself a treatment and he even demonstrated that to his doctor. She was given the job of pretending to press on the inhaler to make the medicine pretend to come out.

At the end of the week we checked in with the GI doctor. He gave us the prescription for the appetite substitute as predicted. He also mentioned Will's pediatrician. He has a new son and said he chose the same pediatrician after seeing what good care she gave Will!

Will has a really great pediatrician. Since he has a lot of appointments I probably know her better than any of my own doctors. She takes everything we say very seriously and if I have a complicated question she calls me to talk. Since we moved it takes almost an hour to get to her office which is really inconvenient, but right now I wouldn't dream of turning his care over to someone else. There will be a day that Will doesn't need as much attention as he does now and by then I might be ready to switch to a local doctor. Maybe. But I doubt we will find another one with a Choo-choo like this:

After we left GI we went to the NICU to see if one of Will's primary nurses was working. We have met up with her a couple of times before - a few times when he was in hospital rooms on other floors and once in the cafeteria. This time she had us meet her in the NICU. This was our first trip back inside those double doors. I found myself smiling as I walked down the long hallway with Will in his stroller, snacking on Goldfish crackers and drinking Pediasure from a cup. It was nice to know that we were coming back to a place with a lot of difficult memories in a MUCH better time in Will's life. She was thrilled to see him so happy and eating!

She also told us about this baby that recently left the hospital after being there for OVER A YEAR!! I often think that even in our worst times there is always someone that is coping with something more difficult. Well, this baby is the latest example of that. Will spent his first Thanksgiving, Christmas, and New Year in the hospital but at least he was home for his first birthday!

Now for the feeding news: the appetite stimulant is actually an antihistamine that has the side effect of increasing appetite. After only one day we can say we've definitely seen an increase in what he is eating. Breakfast and lunch were about the same, with a slight increase in bites. But his 10 am snack and dinner were definitely bigger. He ate a whole cereal bar by himself for snack. Normally he would only eat about a third of one. And for dinner he ate a half a peanut butter sandwich AND many spoonfuls of the diced tomatoes from my taco soup. He started out eating the meat, corn, and beans too but once he got a taste of the tomatoes he couldn't be stopped. Since I don't like tomatoes I think this could work out really well for both of us!

*there's a star

Will and friends!



First-Ever Special Kids Race from Special Kids, Inc. on Vimeo.
If you go to the race registration website you will find Will again in a photo on the home page.

Will loved getting to see himself with friends in a video. Maybe he even remembered that day and thought it was cool that he could see it again!

A couple of months ago Will's story was used as a motivator for employees of a local business to participate in their company-wide United Way giving campaign. It wasn't a printed material, just an email that was forwarded with a brief story about him and his picture...but the cool thing was the way it got forwarded again and again and comments came back to the writer (a friend of mine) about how moved people were to read about him. Will has received services from Nurses with Newborns of Tennessee, Vanderbilt Bill Wilkerson Center, and  Project Help (as well as American Red Cross if you count blood donations) - all funded in part by United Way.

Continuing on this famous streak, Will was the featured child in his therapy center's newsletter this month:

Also, I was interviewed by a nurse involved with the center about our family's experiences with medical staff during Will's premature birth. It was published in a neonatal nurses' journal. I'll be sure to share it here if I get a copy.

*there's the month of check ups

The results of Will's 2 year developmental testing from the Vanderbilt NICU Follow Up Clinic

Chronological Age: 24 months 2 days
Corrected Age: 21 months 11 days

Weight: back to the less than 3rd percentile... 
 22.27 lb (<3rd%ile chronologic; 3%ile corrected)
Height: 31.9 in (4%ile chronologic; 11%ile corrected)
Head Circumference: 18.64 in (17%ile chronologic; 23%ile corrected)

Bayley Scales of Infant and Toddler Development
Cognitive age equivalent: 24 months
Receptive Communication age equivalent: 22 months
Expressive Communication age equivalent: 23 months
Fine Motor age equivalent: 27 months(!!)
Gross Motor age equivalent: 23 months

The narrative part of the assessment says that all of his results are within a normal range but since his ability to talk could improve with therapy a speech and language evaluation was recommended. Luckily I have had Will on the waiting list for that for a couple of months.

I had suspected that Will's fine motor skills were at least a little advanced but didn't really have a way to compare. Good or bad, it is nice to have something formal to confirm what we thought was true. In summary, he could gain some weight and speak more clearly but he is GREAT with his hands and is just as smart as a 2 year old should be!

A few days after this assessment we went to Will's 2 year well check with the pediatrician. Unfortunately I had to hear "I'm concerned about his weight" from a second doctor in less than a week's time. Starting a few weeks ago, with the help of Will's feeding therapist, his dietitian has agreed to be a little more aggressive in weaning him from his feeding tube. That has helped him eat more at meals but there was a major decrease in daily calories from the formula that he drinks. The fact that he maintained his weight after the decrease was a good sign, but when there's no gain and even a small decrease the alarms go off in the heads of the professionals.

Since this feeding stress can be trying, I'll point out the bright side for us all to remember...
he has never needed a different, more difficult kind of feeding tube
he tolerates feeds (that means he doesn't vomit several times a day...anymore)
he doesn't require any daily medications (right now)
we have the gift of good health insurance

he is willing to try the food we offer him
and
he will eventually eat!!

A partial month's supply of his current formula, Pediasure 1.0.

His upcoming appointments:

 

Next up is Dr. Arboleda in the GI clinic...

*there's party time

He's TWO!

Will's 2nd birthday party had a Goldfish theme

Goldfish bar - the S'mores flavor was the favorite.

Make your own Goldfish snack mix

On Saturday we celebrated Will's birthday at our house with family and friends. It was such a nice day the kids got to play outside.

 

Will and Karsyn playing house.

Will and Lily playing rough house.