Aggie Medical Update

She's still remarkably cute.

It's been awhile since I've reported on the medical front. It has slowed down a bit, but we did have several appointments at the front of the month, they seem to come in groups, which in some ways is nice b/c then I get them all over with at once, then resume "normal" life after a full week.

We saw a new genetics Dr. August 9th, the same day as baby bean's big reveal ultrasound. The genetics Dr. in Birmingham who specializes in mitochondrial diseases wanted us to see a general genetics Dr. to "make sure she wasn't missing anything", as she is trying to decided whether or not to repeat the muscle biopsy that was done improperly last Fall.  So we saw one in Mobile. He was very nice, his conclusion at a glance is that Aggie doesn't have mitochondrial disease. That she had something happen in-utero. Which is the same conclusion everyone has drawn.  The one different thing that happened this time, is I mentioned that I had done some reading(i stumbled upon it in my pregnancy book) on CMV (cytomegalovirus) and was wondering why we were never tested for this since Aggie has many of the effects of someone who would have had it as a fetus (hearling loss, brain injury, small head).  He was surprised this was the case, and recommend we both be checked for the antibodies of the virus to see if we had in fact had it at some point in our lives.  It's been so long since her birth that it is possible she could have contracted it on this side of the womb, but if we both come back positive, it could be some useful puzzle pieces. This was yet another negligence of our original neurologist.  I had even mentioned to him when Aggie was 6 months old about the possibility of testing for antibioties of common intra-uterine infections, and he had basically told me that it would serve no purpose at this point. I do realize that God was sovereign in even this, but how extremely frustrating the thought of this has been, and all the possible things that could have been avoided if we do in-fact come back positive. I had my blood drawn last week, and will wait for my results before we get Aggies drawn.

We also saw the opthamologist that week, the 10th.  To get the stent removed from Aggies Left tear duct. That was placed there in hopes to keep it open. The idea is that the duct will heal open with the stent in, and once removed will continue to stay open. Time will tell. We now just need to go back annually for eye exams unless other problems arise.

Developmentally Aggie is pulling up to stand more often, on more things. She crawls all over our home all day long trying to get into things she ought not to. We keep the bathroom door closed now after finding her pulled up to the toilet a couple weeks ago. So she is doing "normal" activities for someone of her developmental age of 11 months.

ENT we see quarterly to check on the ear tubes.

Audiology we see for new ear molds or hearing aid problems.

Cardiology Annual Echo's and EEG's.

Neurology....... I almost forgot. Recently we had noticed Aggie having a new behavior that could or could not be a mild seizure(we are suppose to watch for those since she's "at risk").  After witnessing it several times we decided to call the neurologist in Birmingham They were very helpful! We sent a video to them of it, and they called us back promptly to inform us that they do not think it is seizures, but a behavior that is common of children with Aggies condition. We are grateful for the news, but are praying that this behavior will not continue all of her life. I am most of all grateful for the excellent care of the Dr. and his staff, as they will not be paid for their time by our insurance for their services, yet it saved us a 4 hour van ride there and back.

Therapy is going well, she is getting new ankle braces soon, as she is outgrowing her old ones.

Aggie in a nutshell.