Friday, February 29, 2008

Up Time, Helicopters and Frogs

Sky is such a goof... he loves his frogs
even if they are not real!!!

Friday, February 22, 2008

Skys New Chair

Skylars tumble form came today, and he LOVES does mom and dad, now he can be up so much more!!!!

A few pictures from Jan and Feb

Thursday, February 21, 2008

Busy Bee

Wow time flys when you’re running a 101 miles per hour. Skylar is doing great, staying healthy in one of the nation’s worst cold and flu seasons (Thank God). Skylar is in the middle of transitioning from the 0 to 3 program to the school system. It’s been a treat, one I don’t think I like very much, but am doing it any way. We reached the decision that Skylar will not attend public school, but will be home schooled by myself and with assistance from the school system hear in Stanwood, he did very very well on his evaluation, and is showing to be much brighter then your average 2 year old (but I already knew that). I have been very busy trying to get him the equipment needed, stander, power chair, tumble form seat, and a special bed to help prevent pressure sores. So far so good, our insurance rep is the BEST, Sue if you read this (we Love you)... Skylar has been doing wonderful with his time off his v-pap we are trying to do 2 hours off 3 to 4 times a day. We are also looking for a van, so if any of you out there know of someone selling one let me know. My big kids are doing excellent in school, Moni has a GPA of 3.86 and Chan has a GPA of 3.38, pretty darn good!!! Keith is enjoying his job and doing very well with it, we are looking forward to a visit from his sister in June (Ruthy we can’t wait)... Other then that not to much going on other then enjoying our beautiful weather, can’t wait for it to get warmer so Sky can go out too. me I’m just itching to get into my yard!!! Big Bug Hugs to everyone Sheila

Friday, February 15, 2008

Skylars Valentines

Skys new bubble blower from mom and dad.
Skylar with his SMA Valentines, he had so much fun opening them, eating the
candy and playing with the toys.

Skylar had a wonderful Valentines Day!!!

Wednesday, February 13, 2008

Skys New Trick

Simply amazing, he hasnt done this by him self in 2 years.

Monday, February 11, 2008

Something Amazing one SMA father wrote, Please read

1. I've come to terms with the fact that I'm going to lose Gwendolyn to SMA, but I'm terrified of watching her slip away from me
2. I appreciate when people ask questions about Gwendolyn; I hate when people don't and instead choose to make ignorant assumptions
3. I worry about our $5mm health insurance cap from time to time; it didn't even cross my mind when we set the policy up 5 years ago at age 27
4. I think of Gwendolyn's funeral often and I'm comforted every day when I walk past our church where it will be held
5. I get anxious knowing that we'll have to save Gwendolyn's life at some point again; it comforts me to know we are well equipped to do so
6. Most of the time I feel like it's next to impossible to focus on anything other than Gwendolyn and Victoria; but, they're all that matters right now
7. Wherever we go, I know where the nearest pediatric intensive care unit (PICU) is and I know which one is best suited for SMA and our philosophy of care
8. I no longer believe "everything happens for a reason"; I've never believed God had anything to do with my plan, now I'm certain of it
9. I'm now a complete germaphobe, but it's life or death for Gwendolyn
10. I have a hard time remembering what it was like to not have a child with such "special" needs
11. I've become comfortable with empathy; I'm not okay with sympathy
12. I worry about the toll this is taking on Victoria, Gwendolyn, our family, our friends, and me
13. It bothers me that we have to keep a bag packed for hospital emergencies; it stresses me out that we'll be using it again
14. I wish that when people were unsure of what to say, they'd just say nothing
15. I understand that all parents have to make weighed decisions, but every-single-simple-decision-I-make-for-Gwendolyn-has-actual-life-or-death-consequences
16. I've become accustomed to the constant sounds of Gwendolyn's machines, but I think that when they are gone the silence will be deafening
17. I worry about keeping Gwendolyn stimulated - bringing the world to her - but I know I am doing the best I can
18. I'm no longer self-conscious about how "different" we are; whatever that means
19. I've always had a "life is short" mindset; I never thought my daughter would be the one to teach me what that truly means
20. I'm the furthest thing from a doctor, but I am one of Gwendolyn's caretakers and I know what is best for Gwendolyn
21. When I'm in crowded places, I sometimes think about how many people around me don't know they are carrying the SMA gene; that makes me sad
22. I've thought about whether we made the right decisions, not for us, but for Gwendolyn; her zest for life and playful smiles lead me to believe we have
23. It's exhausting to constantly have to fight for everything and educate others; I wish the system were different and this weren't so, but I'll never stop fighting
24. It kills me that our family is going to shrink, when it should be growing
25. I am mindful that every time I hug and kiss Gwendolyn goodbye or goodnight that it may be the last time; and I make certain to cherish every single joyful one of them.

Friday, February 08, 2008

New pictures

Skylar playing with a flashing spike ball

Skylar loves his shape ball, his favorite shape is the oval.

Up in my chair playing

Feeling grumpy, I didnt want to sit up!

Saturday, February 02, 2008

My Sky

Sky haven fun with his ABC car.

Silly string hair!!!

Sky reading his Spongebob book.

Ok I know he is 2 and a half, but I can not get over how precious he is...
And how peaceful he looks while sleeping.
Ok I have to do some bragging, Skylar is so smart. He amazes me each and every day, we can now count to 15, he knows all of his shapes, colors, and about 10 different animals sounds. He has his ABC's down, but does them best with letter-picture association. He is a great problem solver. He loves his V-smile, and I must say its been the best thing Ive bought him, he is mastering games made for 5 and 8 year olds. He still only talks when he wants, but when he does, wow will he blow you away. We have learned a few new tricks that have been a little hard to master given his SMA, but we now do thumbs up and guns (soo cute). I am working with our ped and neurologist on getting him on VPA. Its a trial drug that has done wonders for the SMA kids I know on it. So I hope and pray this will happen. Basically the VPA has been proven to help SMA kids produce the depleted protein, increasing there strength. I know of one TY II that was only able to sit, and he has been on the VPA for a few months and his mom just posted a video of him walking (on his own) made me cry, as I know first hand how she must have felt to see such a wonderful thing, and too see the pride and excitement on his little face. So maybe with the grace of God and good faith, Skylar can have some wonderful turn arounds while on it too.