Saturday, June 11, 2011

Micah's 3!!

So I have been having a really hard time the past few weeks with the reality of Micah turning 3 years old. It is so amazing and wonderful, he is getting ready to start preschool and we are working on getting him a computer system that tracks his eyes. He loves it it is called an eyegaze system by Dynavox. He is amazing in his attitude and intelligence. he is tall and growing like a weed! Right now he LOVES Toy Story and he has to watch Toy Story 3 like every day!

But along with the good i cant help but think about what it means as far as the progression of his disease and the kids that have "earned their wings" this year. Two of the sweet boys I follow on their blog are gone now both before their third birthday, a little girl almost four and a baby just weeks old! One especially hit me really hard, I think its because he reminds me so much of Micah. But enough of that!

Micah is 3 and this is a blessing we thought may never come! Thank you God for one more year and we pray for more!

Wednesday, April 20, 2011

The Wall

Life here in this world is hard enough just to make it day to day being happy and taking care of yourself. when you have a family your whole world changes and then you are not only taking care of yourself(or in my case you stop taking care of yourself) you are responsible for your family.This is a wonderful thing you as a mother want nothing more than to see your family happy and your children have and do everything. then you run into things like SMA that put an immediate halut to every hope and dream you have for yor child (or in some cases children). The shift in hopes and dreams for your child go from runing and playing, being a doctor and race car driver or lawyer to breathing and moving and geting to celebrate birthdays first, second, and third if God willing.

Long story shorter we are one and one half week home from the hospital after Micah had double pneumonia and right lung atalectasis, desating all the way into the 40s and he is finally starting to look like Micah again! This all started from a silly little cold that Joseph brought home form kindergarten! we all got it and Joseph had an ear infection, i got a sinus and ear infection and Don got the sinus and ear infection! so naturally Micah got this cold too and we first saw it in him on a Wednesday and that Friday we took him to the Dr and he got an injection of antibiotics and a prescription to start the next day because the x ray showed the same old thing RULIPP right upper lobe infiltrate possible pneumonia! Saturday and Sunday he got a little better but after that he seamed to his a wall. Tuesday Danielle and i took Micah to the Dr for a recheck and he wasn't worse but wasn't better either and i was stuck. so on Friday after a few phone calls and lack of air movement in Micah's lungs we went to Dr Landon who is Micah's pulmonoligist and he just said GO NOW! so Friday we admitted to the PICU in Santa Barbara and his Xray showed double pneumonia and that was supported by his blood work and he got worse on Saturday!

When we were discharged on Monday night he was a little better but not where i wanted him to be and the rest of the week he was still struggling so Friday again we went to Dr Landon and he felt that Micah was still fighting an infection of some sort and brought out the big guns and put Micah on a short course of Cipro and an inhaled steroid called pulmicort. He is doing much better and continues to do better every day! I got him to laugh yesterday!
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