Every procedure comes with problems. Even though Tripp is still having problems with sleep apnea, I know that we made the right choice when it came to the jaw distraction vs tracheostomy. This is what a mom of a prs baby girl that had a trach instead wrote:
"She is five, just started school in august, and is pretty much the picture of health now. She only suffers from "normal" childhood things, colds, ear infection ect. She received a feeding tube and a tracheostomy when she was one month old, and was never home for more than two weeks before we were back in the hospital with another long infection until she was all most three when she had them removed. "
Constantly being in and out of the hospital for years would be the most distruptive thing for our family, and I am so glad that we chose to do our research and chose distraction instead of just going the easy way with a trach.
Thursday, October 27, 2011
Wednesday, October 26, 2011
Bad news=Good news
Tripp had an ENT appointment yesterday at Wake Forest, and he told us some news that not one person has told us since we have come home. Im not sure why anyone has not mentioned it before though because several different doctors have looked in his ears, and it is not something that happens overnight. But there is fluid behind his ears, which is pretty common in kids with a cleft palate. So we will be getting tubes put in at the same time his cleft is repaired; its not something they do before because then it can lead to milk coming out his ears which can cause more infections.
But the good news about all this fluid is that it may also be causing some of his hearing problems. We are trying not to get too excited about this but the hearing aids may only be a short term thing--just until he gets the tubes put in! We are planning to have an audiologist in on the surgery to do an abr while he is still sedated for the surgery so we will find out that day if his hearing has improved at all after the fluid being drained.
God is so very good!!
But the good news about all this fluid is that it may also be causing some of his hearing problems. We are trying not to get too excited about this but the hearing aids may only be a short term thing--just until he gets the tubes put in! We are planning to have an audiologist in on the surgery to do an abr while he is still sedated for the surgery so we will find out that day if his hearing has improved at all after the fluid being drained.
God is so very good!!
Thursday, October 20, 2011
October
Golly, October sure has been a very busy month for Tripp.
The latest is that Tripps hearing aids should be in next week! It will be so exciting to see how he responds once he can actually hear!
ST and PT are being increased both being increased to once a week for Speech and every other week for Physical Therapy. Speech is being increased because now we also need to work on language/hearing skills along with eating skills. And physical therapy is being increased because while he is not really behind we dont want him getting behind. Tripp still has alot of work to do with head control as he is still not lifting his head up for extended periods of time.
We also went to Wake Forest 2 weeks ago and met with a pulmonologist there who is scheduling a sleep study. They said to call tomorrow if we havent heard of an appointment for it yet, which we havent so Ill be calling tomorrow about that. This same week we also met with his plastic surgeon, he is wanting to push back his cleft surgery for sure until a year old, because this will only give him less room in the back of his mouth. He is going to see how the sleep study goes and see if he grows any more in the next few months. If he doesnt and is still having sleep apnea problems then we will see about a second jaw distraction. He said that he hasnt ever had to do a second one, so hopefully his jaw will grow enough to avoid this and to stop the sleep apnea problem (bc sleep apnea does have some serious long term effects).
On a good note Tripp is not aspirating any more and is doing awesome with bottle feeds. He is consistantly eating about 1/2 of his bottle and a few times has finished all of it. Which is awesome, our speech therapist is very impressed--she says he is blowing all of the pierre robin babies that she has seen out of the water! (Even though he still is having some sleep apnea issues, this is the wonders of the jaw distraction when compared to a trach which is what every other pierre robin baby has in this area) He is also eating about 1/3 of a container of stage 2 baby foods.
The latest is that Tripps hearing aids should be in next week! It will be so exciting to see how he responds once he can actually hear!
ST and PT are being increased both being increased to once a week for Speech and every other week for Physical Therapy. Speech is being increased because now we also need to work on language/hearing skills along with eating skills. And physical therapy is being increased because while he is not really behind we dont want him getting behind. Tripp still has alot of work to do with head control as he is still not lifting his head up for extended periods of time.
We also went to Wake Forest 2 weeks ago and met with a pulmonologist there who is scheduling a sleep study. They said to call tomorrow if we havent heard of an appointment for it yet, which we havent so Ill be calling tomorrow about that. This same week we also met with his plastic surgeon, he is wanting to push back his cleft surgery for sure until a year old, because this will only give him less room in the back of his mouth. He is going to see how the sleep study goes and see if he grows any more in the next few months. If he doesnt and is still having sleep apnea problems then we will see about a second jaw distraction. He said that he hasnt ever had to do a second one, so hopefully his jaw will grow enough to avoid this and to stop the sleep apnea problem (bc sleep apnea does have some serious long term effects).
On a good note Tripp is not aspirating any more and is doing awesome with bottle feeds. He is consistantly eating about 1/2 of his bottle and a few times has finished all of it. Which is awesome, our speech therapist is very impressed--she says he is blowing all of the pierre robin babies that she has seen out of the water! (Even though he still is having some sleep apnea issues, this is the wonders of the jaw distraction when compared to a trach which is what every other pierre robin baby has in this area) He is also eating about 1/3 of a container of stage 2 baby foods.
Tuesday, October 4, 2011
Eye Doctor
So thankful today! Tripp had to go to the eye doctor today and everything looked great and he doesn't have to go back for a year!!
His retina's both look really good and they are in perfect condition (which detachment is a bog concern with sticklers syndrome and something we will have to watch his entire life). Nearsightedness is also a problem with sticklers syndrome, but, he obviously has no way to tell us right now what he can and can not see at this point. So next year we will evaluate for this and also check the retinas again.
Praise the lord for a good day!
His retina's both look really good and they are in perfect condition (which detachment is a bog concern with sticklers syndrome and something we will have to watch his entire life). Nearsightedness is also a problem with sticklers syndrome, but, he obviously has no way to tell us right now what he can and can not see at this point. So next year we will evaluate for this and also check the retinas again.
Praise the lord for a good day!
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