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6.7.17 Update

The past 2 months of silence here do not indicate a period with no events, rather one where I was too challenged to give you updates. Now that I am feeling well again, here is the reason for my silence, we are anticipating a family addition in early November.
With our previous pregnancies, we did not yet have an underlying diagnosis for Aimee. This time around we know and actually have the ability to test for this particular gene. Although both of our blood was tested showing that we were not carriers of KCNQ2, there is still a possibility of a mosaicism in one of us (where some of our cells carry a different set/arrangement of chromosomes than the rest of our cells). We have decided to meet with a genetic counselor so that if this little one has KCNQ2, both us and the hospital can be prepared for major seizure response in the first couple days of life. If the baby does not have this gene alteration, we can relax our seizure watch. We will be meeting with this counselor early next week to discuss the testing. At this point we do not know if the test is a big blood panel or if it is an invasive test, which would cause us to reconsider our decision. As a part of this meeting, we will also have our 20 week anatomy ultrasound and see this sweetheart for the first time. 

In Aimee's life things have not been quiet either. Over this past couple of months the biggest difficulty has been with allergies. This year is challenging in our area, because of the delayed Spring, causing so many pollens and grasses to be an issue all at once. Every year Aimee seems to have a harder time managing as well. She is on high amounts of allergy meds and still having difficulties on the high count days with reflux, bleeding eyes, and oxygen levels.

During this time Aimee has met with multiple specialists, including a new physical therapist through Providence. This evaluation was so scary that Aimee sobbed for about 9 hours afterward.

Her brothers surrounded her with their favorite stuffed animals to help her feel better. The therapist said that currently Aimee's biggest fight is gravity. Every part of her body has grown heavier and her muscles have not been able to keep up with it. Lately it feels like her body is being rapidly twisted.  We are trying to do a better job of getting Aimee time everyday on her left side to help her breath and to attempt to slow this twisting shape.
Aimee also added these new arm braces to her daily routine. I rather hate bracing up both her feet and arms, but do want to avoid any surgeries that we can for the future. 

She has had two addendums added to her IEP. We were disappointed to learn that after evaluation for both vision and physical therapy at school that she will only receive consult services for each. However, we are grateful that she will at least have consult added. 

Aimee has also started a sedative medication to attempt to regulate her sleep schedule. While it initially caused disturbing effects, she is currently sleeping as well as she ever has. She has not woken up in the middle of the night (aside from desats) or been up all night in a month. We hear that this may not last, but it has a potential to give us all a couple of years of better sleep. We will take it! This consistent sleep has increased her awake time at school from 50% to 75% and overall improved her alertness.

Looking forward to a beautiful season ahead with Aimee smiles, silly sounds, and contagious laughter. I sure love this girl. 


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