Monday Patrick started PT and OT outpatient at U of M. We are working with 2 new therapists and LOVE both of the ladies working with him!!! They have a lot of great ideas for him and we set some pretty specific goals, so I am looking forward to going with him every week!! Added bonus....they moved out of the hospital into a new facility, so no parking ramps to deal with, YAY!!!!! If you've ever been to U of M, you know how exciting this is!!
Thursday we took part in a CPAP clinic to see if there were any other options for Patrick, other than a mask for sleeping. We met with the ENT again, Neurology/Sleep Clinic and a dental/orthodontic team. After seeing all 3, they all met in the afternoon to see if they could come to a conclusion on whether a mask is the best option or another surgery. For Patrick, his obstructive sleep apnea is pretty significant, so we wanted to look at all options first. Since his tonsils and adenoids were not obstructive, they were looking to see if maybe they could move his jaw out a little to make room for his large tongue. But his jaw is already further out than what it is supposed to be. So that ended up not being an option. So we all decided that the mask is our only option for now and we hope he "grows" into his tongue. Most of it, they believe, is caused by his low muscle tone and him not being able to control his tongue while sleeping :( So we move on to our darth vader mask....yay(insert sarcasm). They are ordering just a mask for us to just use for practice on him before we get the whole thing. We shall see how well Patrick will tolerate it.
Today we saw the surgeon for follow up, and that went great. Everything has healed well and our little guy is a rock star!
Now for our really good news.....we received a letter in the mail yesterday, to notify us, that the insurance has approved his bed!!!!!!!! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We couldn't be more excited!!!! We are also thankful that we ordered it with the holes for a CPAP mask:) So so very happy!!! Thanks to everyone who stayed positive or prayed!!! We just have to wait for it to be ordered and delivered, which will take a little bit. But we are one step closer to getting our boy a big boy safe bed :))))
I will leave you with Patrick singing along with his favorite song. I am not sure how we discovered that he loves this song....but he does!! He could be so cranky and this song makes him sing :) Not only will you hear him humming along, the ever talented Tim Kelley shows off some of his belching talents. If you don't want to watch all of it, watch some and then scroll to the end-that's the best ;)
Have a great weekend!!!!
Dear Bubby and family: You are such an inspiration to all who know you! I am soooo thrilled at the care and encouraging challenges your therapists, doctors, and parents and family are able to provide. So, Bubby, I saw your singing/dancing video, and dude you have some definite moves and rhythm accompanying your Beatles song....we'll see how your dancing skills improve )). Can't wait for you to have your big boy bed which will be sooo comfy. The breathing mask is going to take getting used to darling boy...but you'll do it! We're pulling for you and ask grace to fill you and all who are in your life to bring out your potential...especially mom, dad, brother and sister...everyone seems to have a role! Will be seeing you in near future....your loving great aunt (wow on the great)...Kathy
ReplyDelete