Tuesday, March 15, 2011

WHERE HAVE I BEEN?!?!

I'm here!! I'm here! I feel awful that I haven't posted an entry since.....I can't even remember when! Life has been busy (that's an understatement) & part of me has been in & out of a funk. Life with 2 special needs children & a deployment will do that to a person. There were many days when talking about it or writing about it made it worse & all that mattered was getting through the day. I have learned to accept those days as part of the process. It comes & goes & it's OK. What's important is...I'M BACK!!!



Eric returned safe & sound from the deployment in early December. We have been adjusting to family life again. It was wonderful to be together for the holidays. The kids are loving the time with Daddy...snuggling & playing. I think many people have the idea that life is back to "normal" (I hate that word!) around here & my husband is back so life is great! It is, but we are in transition mode & we are taking it one day at a time. I need to remind myself that my husband was in a war zone for a year...sometimes I felt like I was in one too! :) We'll get there, one day at a time....



Emily is still struggling with seizures, she is on 3 medications daily & gets medicine 6 times/day. She recently stayed over night in the Epilepsy Monitoring Unit at Albany Medical Center & the neurologist was able to officially diagnose her seizure disorder....Atonic Seizures or Drop Seizures. These seizures consist of a brief lapse in muscle tone that are caused by temporary alterations in brain function. Emily drops her head really hard & strong, sometimes falling over.

The seizures are brief, only lasting about 15 seconds. The seizures itself do not cause damage, but the loss of muscle control can result in injury because of falling/hitting her head. This has happened to Emily numerous times. We are in the process of getting her a helmet to protect her head. That was not an easy step for me. Ugh! We already get the stares because our daughter has Down syndrome. Let's add a helmet to the mix!!! Oye! I'll do whatever I need to do for Emily.



We are also getting her an adaptive stroller...like a wheelchair, but it looks more like a stroller. This will give Emily a lot more needed support. I am acutally getting excited about the stroller. We are waiting for approval from the insurance companies. We should have it in a few weeks. We ordered a pink one & that makes me happy. :)



Aidan is doing great in kindergarten! The year is flying by & I feel so blessed to be home & be able to share in so much of his first year of school. He just completed an art project with Daddy over the weekend. They made bongo drums for an Art Museum that his school is having. Very sweet!!



I hear Emily playing with a squeaky toy in the playroom. She is saying, "Da da da" in a sweet, soft voice. I don't get many sounds from my little girl, but when I do, the world stops for a moment so I can take it all in.



I promise not to be so absent from the blog. Also, the pictures on the blog are very outdated & I am clueless about how to update them. Like I always say...it's about the words.



I'm about to make another entry.....See, I told you I was back!! :)

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