The surgery for the malrotation of her intestines & the ear tubes are going to be done on July 6th in GR. This way she only has to be sedated once. They will also preform the hearing test immediatly afterwards and we will know for sure what we are dealing with. I hate to rush things , but when August is here I will feel much better - having that surgery behind us :)
On to genetics - according to her testing the number 18 chromsome has a very tiny piece missing. According to her report she said it could mean higher risk for ADD or Anxiety later on in life. Then she also has an extra piece to her #11 chromosome. Instead of 2 she has 3. This also could mean alot of different things. What those things are we are not sure yet. The next step for them is they want to test Steve and I to see if one of us carries a transposital gene. meaning that the 18 & 11 are switched indicating why she has lost a part of one and has an extra of another. sounds like they may still be leaning towards Russell Silver but the endrinologist will give us more info on her growth. We are still waiting to get in there. There is a review process in which the doctors review the cases and see who is priority. Currently we are still being reviewed. Hopefully will hear by next week.
Now I did some quick research about the 18 chromosome deletion. There are many things that can go along with it according to the site I found. The doctor today made it sound like no big deal. but what I found was kind of all too familiar. Some of the things I read talked about malrotations and hearing loss. Both of which she has. Also short stature or slow growth. I guess I have a lot more questions for them - as after Steve and I get our blood drawn - we will meet with genetics again to personally go over results. So for now - I am going to stay positive and enjoy her little cuteness :)
Too tired to write anymore - will check in later with any new information
Steph
Hey Steph. Jeff and I are relocating to Grand Rapids on June 27th, so if there's anything you need, we'll be close by and would be there if you need anything!! Praying for you and Mallie and Steve!!!
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