He is talking so much! I would guess he has 30 words and a
good majority of them are accompanied by signs. He enjoys signing and is
beginning to understand the cause and effect of his communication. He is a
sponge right now and repeats almost any words we say to him. He is becoming a
bit braver and has started pulling up to stand on the furniture and making
progress in his walker. We do think he is going to need orthotics to start
walking independently. I am loving having both boys crawling! Asher loves to go
outside and play at the water table and is becoming more tolerable of the grass.
The name Vaughn means small (it doesn’t mean weak though)…...David
must have looked so small to Goliath and yet David was the one with the courage
to fight.
Vaughn has been on a low dairy diet since the middle of July
and things are looking up, including his weight. After the FTT diagnosis we
went back to the Doctor and in the 2 weeks since he went off of milk and dairy
he gained 14oz’s in the 2 weeks! We were thrilled and the vomiting had slowed
down and by August has stopped all together.
We were seen at the Children’s Feeding Clinic shortly after
my last post and the good news is, with the help of all our therapists we are
already implementing a lot of the suggestions this team offered. They did
explain that Vaughn eats at the level of a 9 month old. Their observations were
that he eats slowly and to help him get more calories in at a meal, we should
try to always give him applesauce; yogurt or pudding per meal as we can spoon
feed this to him. This has been a little difficult as he has become independent
at meal time so he gets a spoon and I get a spoon and we both take turns.
We had a gastric empty study on Monday of last week and the
results showed us that Vaughn’s stomach does empty at a slow rate. In 60
minutes, his stomach should have emptied half of the 7oz bottle that he drank. The
GI Doctor was able to estimate by the rate his stomach was emptying that it
would take 106 minutes to empty just half of the milk (formula) consumed. I was
actually thrilled that something was wrong, we finally have an answer to some
of the challenges that Vaughn faces. This explains the acid reflux, vomiting,
and even the reason for the small meals as he doesn’t have time to get hungry
in between meals and snacks. Typically kids grow out of this gastric delay and
for now we are starting a medication that should help his stomach empty at a
faster rate. We are hoping this medicine will allow for more calories to be
consumed in the day so Vaughn will really start to grow.
We are making the least amount of changes to his diet to
help us determine if the medicine is helping so for now, we are staying on the
low dairy diet. We go back to the GI Doctor in 6 weeks for a follow up to
decide if we want to continue the medicine and start allergy testing. We have
added an RD to the therapy team as high fat foods are the foods that stay in
the stomach longer and can be harder to digest and that has been the diet
Vaughn has been on since he came home from the NICU. We are working to find a
good healthy balance for Vaughn and she will be doing bi weekly weight checks
on him (here at the house) for a couple of weeks so we can chart the growth.
We started dilating Vaughn’s right eye (the good eye) to
force his brain to use his left eye more as the glasses have become almost
impossible to keep on. The drops last for 3 days at a time and we dilate twice
a week for the next couple of months to see if we can help the left eye track
the same as the right. The dilatation doesn’t seem to bother him and this is
much easier than trying to patch his eye. We are praying this will be the
solution.
I am not sure I will ever know the answers to the “why”
questions regarding my sons, so for now I am content with asking if they want
milk or juice with lunch and will be grateful for the story that unfolds before
me.
