Feeding Tube

As of May 26th  Shane no longer has a feeding tube! He had consistent full bottles in a row for a couple days. So I decided it was time to take it out! The only downer is its not as easy to give him his medicine now! :) I will figure it out! His cry and voice also seems like its getting a little louder so I think his new medicine is helping! Yay!

Swallow study/ Ent visit

Today we made our journey to Primary's for two appointments. Ears nose throat specialists then swallow study.

 First We met with an ears nose throat specialists for concerns over Shane's quiet cry, noisy breathing and possible sleep apnea. They put a tube camera down to look at his vocal chords. They saw that he has a swollen larynx or Larynx Malaysia "floppy airway" that gets irritated by stomach acid and his feeding tube. So they gave him reflux medicine to see if that will help, this all causes the noisy breathing, gasping when sleeps snoring exe.. They also saw that one of his vocal chords is paralyzed on his left side which is causing the quiet cry and that is a chord that is wrapped around the aorta so his surgeries had big impact on that chord .  they say it can come back after time hopefully by the time they are a year old. If it does not come back then he will just have quiet voice but won't affect his pronunciation of words but there is a surgery to fix it if it is needed. So all of those things were nice to know. 

Second we did the swallow study to test Shane's swallow and to see if we can take his tube out. He did not aspirate on thin formula but we will need to increase the amount he eats orally  slowly to what we give him total (7) ounces  before we can take tube out. This is awesome news Give it a week or so and he will have it out! Oh and Shane weighed 18 lbs 4 ounces! He will be 5 months on the 19th.No wonder my arms have been tired! :)  once again Shane is a strong little bugger making is way finally into "normalcy". 
  

Shane day a million update :)

Just wanted to share some good news ! Today our in home health occupational therapist came by to check on Shane's  neck/ head  and his  eating to see the progress from last week. She was very impressed with the improvement of his sitting up ability  his head movement/ leaning too much to one side and the shape of his head has improved she is thinking if that continues the helmet is out of the picture! This is good news because we called the helmet people and our insurance will cover 90% of the helmet if we have been doing head stretches for 3 months when we have only been doing them since surgery. Otherwise it's $2000! So now I won't have to stress about waiting another month to get him evaluated for a helmet if she is noticing a difference in just a week. I also have been taking her advice and pacing Shane when he does eat the tiny bit he can that has also been helping. She gave us good compliments on keeping up with stretches because not all parents do! We were happy and all the hard work is paying off!  Thank you everyone for your continued prayers!