These shots are from his trip to his Granddaddy's farm. He LOVED the cows!
More pictures to come!
Monday, December 5, 2011
*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!
These shots are from his trip to his Granddaddy's farm. He LOVED the cows!
More pictures to come!
Wednesday, November 30, 2011
*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}.
*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)
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 |
Sunday, November 20, 2011
*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!
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!
Friday, November 18, 2011
*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.
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.
Sunday, November 13, 2011
*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!!
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...
Wednesday, November 9, 2011
*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.      |
Wednesday, November 2, 2011
*Happy Birthday Will!
Welcome to your second year!
Life with you is more and more fun every day.
We love you!
Tuesday, November 1, 2011
*there's the day before The Day
When I have said my evening prayer,
And my clothes are folded on the chair,
And mother switches off the light,
I'll still be 1 year old tonight.
But from the very break of day,
Before the children rise and play,
Before the darkness turns to gold,
Tomorrow, I'll be two years old.
Two kisses when I wake,
Two candles on my cake.
Anonymous
Anonymous
Monday, October 31, 2011
*Happy Halloween!
I am sorry to say that Chris is out of town and took our camera with him! I won't be able to get any pictures of Will Trick or Treating but these are almost as good:
 |
| dress rehearsal |
 |
| Will the puppy |
Some pictures of him in action on Country Bumpkin Day at daycare:
Friday, October 28, 2011
*there's a pumpkin farm and petting zoo!
A couple of weekends ago we went with some friends to Lucky Ladd Farm. Will LOVED it! His favorite animals were probably the ducks. Chris' favorites were the goats and my favorite was the potbellied pig. We all got to feed and pet a baby calf that was so sweet and gentle too!
 |
| Feeding the sheep. |
 |
| Quacking at the ducks. |
 |
 |
| Daddy figured out that the big slide will have to wait for next year. Will was either scared or didn't want to wait in line! |
 |
| Seesawing with Daddy and friends. |
 |
| Riding the tractor train. |
 |
| He was fascinated with these guys. |
 |
| Talking about them. |
 |
| STILL talking about them. |
 |
| Picking out his favorite. |
Subscribe to:
Posts (Atom)
