Yesterday Aubrin had an appointment at the geneticist at St. Jospeph's Hospital in Phoenix. She hadn't been there in a couple years. The doctor likes to evaluate her and then changes treatment for her hemihypertrophy as necessary.
Ryan didn't head of town as usual and went to the appointment with me. Thank goodness! I rarely get to Phoenix and don't know my way around there.
Although she was super nervous, it was a piece of cake appointment. Since we were there last, we did get a bit of new information on her disorder. There has been some development in the study of it and he said by the time he sees us in a few years, he will be able to give us more answers as there is still alot of questions as to how people are effected by this. I asked if this would be passed on to her children as this is a genetic disorder and he seems to think that it will not. He said it is still unknown how the genes could effect just one specific portion of the body, but the likelihood of it effecting her reproduction is slim.
When she turns 6 this year she will go to once a year ultrasounds and blood work and will continue to do that until she is 9. It is strange to think we have been at this lab work up stuff for so long and nice to know that they are starting to decrease. We started out doing this every 3 months for a couple of years to every 6 which we are doing now and come November we will hit that once a year mark. Phew!
Aubrin still has a mild form of hemihypertrophy which is evident in her arm size. It seems to have remained in that concentrated area. As we all have some asymmetry in our bodies hers is just more pronounced in that portion of her body. He seems to believe that her arm will continue to grow at the same pace as her other and will not "balloon" up so to speak. He was more concerned about the social aspect of it and we have been fortunate to have a daughter that has a super personality and kids that, thus far, have been kind. Most people do not even notice and we hope that remains true as she gets older.
I promise I didn't do drugs, sniff markers or eat paint chips when I was pregnant. It was just one of those fluke things. I also promise that I will do all in my power to make Aubrin be a confident girl, so that she can carry that with her into the future. If I don't succeed with that and my sweet lil' Aubrin comes home with her feelings hurt because someone was a big meanie, than I will hug her and love on her and hunt the punks down!
Tuesday, February 10, 2009
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4 comments:
I'll help you hunt the punks down too and give em' heck! You are such a good mom :) I have a nephew who had a cyst in his head close to his pituitary gland. When he was 3 yrs. old he had surgery and was in the hospital for over a month because of complications. He has to have an MRI every six months now. My sister is pretty good with him but also let's her other boys knock him around. It makes me angry with her because her little boy has gone through so much and his head is very delicate.
Oh boy. I totally agree with your last paragraph! Paint chips... okay that's funny, but the other part, not so. I think she will have a band of mothers (aka, punk butt kickers) if she gets any crap for it.
Love you Aubrin!
(My mom saw her name on our guest list and said, What a beautiful name! I bet the girl who is named that is just beautiful too! I said, of course she is!)
Glad to hear that you will get more info. I am also glad to hear that things look good and you will be able to go to annual check ups!
Aubrin is a sweet one :)
ok, you have educated me today. I have never heard of .... well I can't even pronounce it! It's interesting to learn about things like that. But, with that said, I'm sure she will be fine socially. She sounds like a great girl and has a great mom and dad to back her up. :o) Good luck with it all.
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