Ashlyn's Medical Update So Far

Ashlyn went to Tampa to see her ear doctor.  He finally took the inner ear packing out and it stayed out (yeah...no more ear drops).  But, we still have to keep her ear dry until Thanksgiving...ugh!  We have to start flushing it twice a day with the alcohol/vinegar mixture starting on Halloween.  Her ear doctor said "no way" to the submucous cleft palate surgery because he thinks she is outgrowing the ear problems, so we'll see how her ear does from here on out.  He wants us to get a hearing test done between Thanksgiving and Christmas to check if he was able to improve that, which he thinks he did.  Going to the doctor in Tampa has gotten bad with waiting.  Her appointment was at 11:30 and she did not see the doctor until 1:00 and had to rush back so she could go to choir.

On their way back on 192 in Kissimmee they witnessed an accident completely happen within feet from them.  There was a head on collision of an SUV with a motorcycle.  The SUV sped up to about 70 mph and crossed a small median into four motorcycles.  One motorcycle was able to avoid the car, but another one wasn't so lucky and the motorcycle was ripped to shreds and it was obvious that the motorcyclist was dead.  Poor Ashlyn witnessed this and of course they all came to a stop and as she watched, she said "Daddy, I think that guy is dead!"  She seems okay about it though, but I know she has some amazing coping mechanisms.

We got the MRI results in and everything looked normal.  This means that there is nothing wrong in her head that would have caused the precocious puberty and that the true cause is really "unknown."  But, the speculation, of course, is still that we tried to "catch her up" on her eating when we adopted her almost three years ago.  Not sure how you couldn't want to do that though.  I could wrap my fingers around her upper thigh and touch my fingers, she was so malnourished.  I guess they should have better literature in the adoption world about how an adoptive parent should go about feeding a child who is malnourished so that this could be avoided.

We are still waiting for the specialty pharmacy to call us to let us know that the insurance has approved the implant and they are sending it to our doctor's office.  I think I will try to call them today to see where they are with that.  I feel like we are wasting time!  All the results (blood and bone x-ray) state that she will be starting her cycle in 6 months were taken months ago (blood was 8 months ago and bone x-ray was 2 months ago).  I just hope we're not too late and we can slow this process down!

2012 - 2013 School Pictures & Ashlyn's Medical Stuff

Got to pick up Kaylyn & Ashlyn's school pictures on DVD today since they were suppose to be free if you order over a certain amount.  They forgot to include it in the girls' school pictures, so we called them and they made them available for us to pick up.  So, here is Kaylyn's 5th grade picture and Ashlyn's 3rd grade picture for their 2012 - 2013 School year!

Two things going on with Ashlyn:

First thing is that we were suspecting that Ashlyn's submucous cleft palate was causing her to have VPI pretty bad. So, last Friday, October 5th, we took Ashlyn to the Arnold Cleft Palate team to have a VPI study done where they stuck a camera down her nose to the back of her throat to see the roof of the mouth try to touch the back of throat while talking.  She had pretty good closure, but you could see bubbles coming up through (which explains the gurgling noises we always hear when she speaks certain sounds).  It lasted about 5 minutes and she did very well.  There were about 10 doctors standing around watching and they showed her the video when it was done.  They could see the submucous cleft very well from back there and luckily there was no paralization like the oral maxillfacial surgeon originally suspected.  Based on the results though, surgery was not suggested for the VPI, but possible to fix her inner ear function.  Can't be guaranteed that it will help though and they'd have to put a tube in the ear drum that's already been reconstructed twice to help with the healing process of fixing the palate.  Not sure it is worth it!

On another note, yesterday I took Ashlyn to get an MRI.  Her FSH levels are too high for her age, her bone age is 2 years older than she is, and she has already developed to stage 3 breast tissue.  So she has precocious puberty and before she starts her cycle, which the doctor said could be in the next 6 months, we've decided to slow the process by getting her Supprelin LA implant to suppress the pituitary gland from going further into puberty.  They are speculating that us feeding a malnourished child almost three years ago kick started this process.  If we don't suppress it now, she will be done growing soon as her bone x-rays indicated (only 55 inches now).  The MRI was to make sure that nothing else is causing her pituitary gland to go into early puberty.  We are still waiting for the approval of the implant by insurance and then getting it to the doctor so he can inject it.  It's pretty painless (hardest thing will be the numbing shot).  It stays in for about 1 year and then they remove it and re-evaluate.  So, hopefully this works and she can at least grow to 5 feet tall and gain some maturity before starting her cycle :-)