Well, things have suddenly gotten a litte stressful on the health front. We have been waiting for some time for the consultation with the ENT specialist about Alivia's small jaw size and eating issues. We finally got to see him this week. At first he was leaning away from any kind of surgical intervention. Alivia's jaw is small, but doesn't seem to be too much of an issue as she is finally eating solid foods and seems to be getting the nutrition she needs. He ran a scope through her nose and into her throat and saw how tight the opening is from her mouth to her throat and suggested that we might be looking at a simple tonsilectomy to relieve some of the space issues. Next, examined the back of her mouth and made a startling discovery. Alivia actually has the mildest form of cleft palette--the back of her mouth never fused and she has a split uvulla (sp). Now he is leaning more towards doing a jaw extension procedure that requires fracturing her jaw on both sides and then inserting a device for two months that has to be adjusted daily to extend her jaw. It's a very painful procedure, but is generally very successful. This doctor happens to be one of the top surgeons in the field and the fact that he didn't immediately jump on doing the surgery makes me feel a little better about it. I know that he isn't just trying to add another case to his resume. Anyway, we have to go back in a few weeks for a head CT so that he can get a more definitive picture of her situation and then we'll make the final decision. I'm hoping that a tonsilectomy will be all that is needed at this time, but it is more than likely inevitable that we'll have to do something about her jaw at some point. I'm worried that the situation right now actually poses a choking hazard for her.
We also did a hearing test on Alivia and had less than definitive results there. That's not unusual in a child of her age, but with the FAS situation we are concerned that she may have some hearing issues. We are scheduled to go back for another test in a few weeks that will involve sedating her and attaching electrodes to her head to measure her brain stem response to sounds.
Alivia is such a delightful child and so patient with the doctors and nurses who are seeing her. It's just amazing to watch--even they are surprised at how cheerful she is and how she doesn't cry or fuss while they poke and prod her. It just makes me so angry that she has to be put through all this all because her birth mother was stupid and drank during the pregnancy. Yes--even the cleft palette issue is one that is rooted in her mother's drinking! While I am ever thankful to her mother for giving her up so that I could adopt her, I hate her for what she did to her by drinking. All of Alivia's medical issues were so easily preventable!
Allright... I've had my rant for the day. At the moment I'm researching the procedures that the doctor is considering and just waiting to find out what the CT scan and hearing test show. On the positive side of things, Alivia is taking more and more steps independently and is picking up new things every day. She's such a happy and charming little thing. It really is hard to be anything but happy around her. I hope as the years pass that I can always say that!
~ Jeana
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3 comments:
Jeana,
My heart goes out to you and Livi. It is so sad that both of you have had to deal with the irresponsible behavior on the part of the birth 'mother'. Livi is so very lucky to have been adopted by someone who is as patient and loving as you. It breaks my heart that Livi is ultimately the one who has to pay the price. I can only wish that a simple and relatively painless treatment plan lies ahead. However, if the other alternatives you listed must come about, modern chemistry can make things easier to bear for Livi and your friends and family will be there for you.
I, too, hope that your future together as a family is full of happiness and joy. May the best of yesterday be the worst of tomorrow.
Christy
Oh, wow, Jeana, I didn't know that Alivia had issues due to FAS. She's so beautiful and her intelligence just shines through. I still believe in my heart of hearts that she'll be okay. Hugs to you both! See you in a week.
How blessed precious little Alivia is to have you as her mommy. Prayers to you both.
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