Starting last week, William began his first round of doctor appointments. On Friday, the OT/Feeding/Speech therapist came to the house for his initial assessment. This is scheduled through First Steps - which is a state run program that assists children who have special needs. So far William will have an OT/Feeding/Speech therapist (she is specialized in all 3) and a Nutritionist. We've also asked for a PT to evaluate his motor skills to make sure he is on track. It is a great program and we met with our family coordinator two weeks ago. She will go back to the team and develop a family plan with the team and us to help William meet developmental goals.
The meeting on Friday went really well and so far William is doing really well skill-wise. He behaves like a 2 week old (now 3 week old) with the exception of the feeding/eating issues. She had a few exercises we can do to help him strengthen his neck muscles which will hopefully strengthen his ability to swallow properly. We've also been doing the exercises they taught us in NICU - so between those, we're doing what we can at this point.
We meet with his nutritionist from First Steps on Monday for his initial assessment. Between her assessment and the information we received from the GI doctor's nurse practitioner, it seems everyone is on the same page - waiting for next week's swallow study to determine the next steps for major adjustments in the feedings and what to do now to help him with current feeding issues.
William is still really uncomfortable during his feedings so they changed his medicine and adjusted his volume of food. Brian and I both think there seem to be a few things going on during his feedings - gas, reflux, and the pain of being hungry and not getting full fast enough. Hopefully the new medicine will help with the reflux pains, and the volume should help with the hunger pains. William is able to do 1 on-demand feeding a day :) which is great because that should also help with gas and hunger issues. We've been feeding him if he gets hungry at the 2-1/2 hour mark, but sometimes that is more frequent than others and starting this week, he's actually sleeping longer at night and going past the 3 hour mark for a feeding! (Any parent reading this understands the joy that extra sleep brings!)
Unfortunately, he is getting granulation tissue around his g-button site. He's had two silver-nitrate treatments to kill the excess skin growth so the button can lie flat. It really seems to bother him, both the presence of the granulation tissue and the removal of it, but after the initial 24 hours after removal - he is happy again.
Overall he is doing really well. He has been gaining weight and is tracking more and more. We've been lucky enough to get outside to the park and for walks, which I think he really likes. He's definitely a true St. Louisian - he loves the heat! He is most comfortable when all bundled up at home and even though he wears a short sleeved onesie on walks, he likes the warmth of the air around him. I did some research and found a great baby carrier - Moby Wraps - which is one of the fabric wraps to carry him around. His therapists recommended we look at them since he likes to be so close to us. It is fantastic! He is all snug and safe and I can have both hands free. I wore it today to the park for the first time, and it was great to be able to snuggle with him and have my hands free to push the girls on the swings and play with them. I recommend them to anyone!
Norah and Isabella are enjoying summer to the fullest! They love getting out to the parks and had such a great time last week when we went to Kirkwood park. Kirkwood has this great sprinkler that runs in the summer. I remember playing in it as a kid and it's great to have our kids play in it too! Kirkwood park is also great because it's shaded all day - so we can spend more time there especially in the mornings, which makes them oh so happy!!
I'll post some pictures next time - until then, have a great week!
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