Friday, March 27, 2009

Updarte post Sophia's T&A and Lily's ABR

Sophia did incredible, I really cannot believe how great she did... Once we got past the first week she was great! I really think she has such a high pain tolerance though, Scott thinks so too and said Anne was the same. But, we kept up with her pain meds like everyone recommended and I am sure that helped. She and Lily were kept home today though due to I think they are both getting colds, although by the way they were bouncing off the walls tonight, one would never know!!!!!

Last week was Lily's ck up with ENT post ABR and we were to get her new hearing aid for the left ear. Unfortunately, we did not get it. Her ENT first came in and checked and said that both of her ears were clear and open meaning that most likely her moderate hearing loss in left ear is due to some type of defect in her ear that she was born with. So, instead of starting her back using the new aid, he wanted to do a CT of temporal bone and said that if it is a defect he feels he can surgically rebuild or correct it and that she has a great possibility of hearing normally. We went for CT on Wednesday and am awaiting results. A part of me hopes it is something that can be corrected surgically, although I know it is not going to be just a 10 minute surgery and they will have to make an incision along the bone behind the ear. But, gosh I hate it that she may have to have another surgery as well! The dr. at the hospital where we had the CT was very uneasy about sedating her without intubation, due to the DS, small airways, previous possible asthma, pneumonia and lung issues - to the point that I was so scared once I said let's do it I cried! I understand the issues and I guess I am happy they were more cautious than less.

Lily's teacher has said since the new tubes her speech is just amazing! We have too noticed it and are so excited! She is so cute as anytime she does something she isn't supposed to she says "I sorry mommy!" melts my heart everytime! Also, has just started going to the potty all by herself, in fact got so mad at me when I opened the door the other day and yelled at me "I go potty" GO mommy! I guess she might have learned something like that from me when she has busted in on me and I have frantically yelled to close the door! LOL!

Friday, March 6, 2009

A little rough spot, but doing great again!

Sophia had a rough spot, probably brought on by an iv that was leaking and causing her pain, but she is doing great again and is such a tough little girl! Just wanted to share one of my favorite pics of her and Lily!

Thanks for the prayers!



She is already done!!! And did great! Everything went smooth and her dad should get to see her in 45 minutes or so!

I am going to see her this afternoon, so will update you then!

Thanks for the prayers!


Sophia is having T & A today....

So, if you could spare lots of prayers we would surely appreciate it! Her dad said they just took her back and it should be about an hour long. He said she was just smiling and happy when they took her back. Gotta love Sophia! Lily always goes screaming, but guess that is why she is alive today because of all that fight! I will update as soon as possible.

Lily also had ear tube replacement Wednesday and they did a sedated ABR as well. She was under alot longer than I thought about 2 1/2 hours, but she did well. The results of her hearing are right ear normal and left ear moderate hearing loss. Also, she did not have any fluid in either ear, so that should not have affected it. They made a new mold for her left ear and I guess when it is done she will wear one hearing aid! There is a possibility that it is a defect of the middle ear and she could have reconstructive surgery so she could here normal. But, we have to do a CT first, so I guess that is nenxt!