Birthday weekend

This weekend is going to be so great, Chandler will be spending his Birthday weekend at home, and Skylar is just so excited!   Saturday will be full of running and shopping, getting Birthday gifts and decorations, Saturday night Moni and Chan are doing moon light bowling with a bunch of friends from school, and Sunday we will be picking up cold stone ice cream cakes, pizza and chicken for our family celebration.  And top that off with Wrestle Mania. (Sky is going to just love it)  Its going to be such a great weekend, time with my loved ones is always the best!

7 more days, AMAZING

Skylar just a few hours old, he was as perfect then as he is now.

Skylar right after his 1st Birthday and trach surgery, look at those eyes

Skylars first Birthday, not how we wanted his first Birthday to be, but this was how is played out.

Skylars second Birthday, loving that cake!

Skylars 3rd Birthday, he was in such a good mood when he woke up.

Skylars 4th Birthday, out for a ride to get some DQ

Skylars 5th Birthday, and what a Birthday gift, his Ipad is just as amazing as he is!

Wow just 7 more days and Sky will be 6....  he is doing so great, and is so much fun, I can not wait to celebrate his Birthday, in our little world of SMA any Birthday over the age of 2 is a God send and a miracle, and that is just what he is, he is my miracle!

All set (almost)

so I have no idea why this posted upside down, and I cant seem to fix it!

April 4th we embark on our newest venture, our nursing schedule is all set up, Skys 1st day of nursing will be on his 6th Birthday.  We are just waiting for the final ok from insurance, I dont think they will be saying no, how could they, if you think about it.  So we are planning a head and looking forward to training our two nurses on Skys care, his does and donts, picking him up and rolling him, what he likes and does not like.

Hi

Yesterday Sky wanted off of his machines, and while off he was talking up a storm, I love when he does this, sometimes he talks so clear, just melts my heart!  He gets lots of secretions for the first 30 mins, but then he does really great!

Nursing and stuff

so I have my order in to the insurance company from our pulmo for nursing services, Ive met with one group and will be meeting with another agency this week, I should also be interviewing a nurse or two later this week, early next week.  I think it may take a few weeks to get things rolling, insurance is the big hold up, the agencies need to know they will be paid, so I understand.  Sky is very excited about having someone else other then mama to hang out with and watch over him, I told him that mama will still be here playing and doing what we do, we will just have another friendly face there with us, he is pretty excited about that.  We are still hopeful to get nurse Danny, but Im keeping the door open to find maybe one more good nurse like him, I know they are out there!

Skylar is doing great, he is looking forward to his Grandpa and Grandma to get home so he can visit and watch a movie, so dad be ready....  the dude has picked out 3 or 4 movies he wants to watch with you guys!  He is getting excited for his 6th Birthday, 20 days and my little man will be 6.   We are going to have a private family party on the 4th and make it a wrestle wrestle party beings that is the day or wrestle mania, and on the 23rd we will have our big get together and celebrate with everyone.

Chandler was home this weekend, what a kid, he looks great and is doing good in school, we sure do miss him, but we are all happy that he is happy!

Moni is doing great, school  is going good, and she even got all dressed up for a school dance this past weekend, even if things didnt go as planned for the dance, she looked absolutely adorable!

Keith and I are doing good, spending much needed time with each other, talking, hugging, dreaming and being alive.

family

Family picture 2011

Moni and Chan rocken out in the kitchen

all my kids playing games

today was a great day, Chan was home for a visit, it was nice to have all my family home at once!  Monis off to a dance tonight at the high school, and Chans heading to a friends house, so it looks like Skys going to get some mama and dada time tonight

Lost tooth

Skylar lost his second tooth tonight, I think he is pretty excited for the tooth fairy!!!!

BIG changes

well this weekend has proven to be a huge step for me, I have trained 2 people in Skylars
care this weekend, he enjoyed every second of having someone new to play with.  I have got a nursing order in with Childens Hospital to start some much needed nursing here in our home, for the past 5 years I have been doing all of Skylars care, and its time to change that, free up some time for myself and my family, the nurses will go with us when we go out or they will be home with Sky if I need to go do some running.  so far its going really well, its hard for me to ask for help, and Im just Thankful I did.  Please keep us all in your thoughts as we embark on this new adventure, pray we get happy loving people in the house who really care, I dont want someone in here that just refers to this as a job.

sooooo

good news I got my license, it took 8 mins!!!!  but 3 miles from home the van broke down, I had a neighbor come get us, and take us home and I have the van being towed home now.  so it was interesting little outing!

heading out

Sky and I are off on adventure today, nothing to big and crazy, but we are getting out for a while, I have to go renew my license and I promised him a new monster truck.  So Shelley is going to come up and be our driver, dont want to drive with out a legal ID.  Im excited and a little nervous, we dont go anywhere with out dad, but dads not here today, so off we will go and get a little done!!!!

I am only one, but I am one. I cannot do everything, but I can do something and I will not let what I can not do interfere with what I can do. -- Edward Everett Hale 

awesome quote

You cannot change a person, but, you can inspire a person to change......

People cry, not because they are weak but because 
they've been strong for too long.

SMA gene therapy

Based upon initial talks with the FDA, the FDA believed the proof-of concept studies were adequate from Dr. Kaspar and Team's proposal that was sent to them and they did not require a pig model of the disease for testing to move into clinical trials.  What would be required are a few additional studies to determine how much virus for dosing, as the FDA requested a dose escalation trial.  Then, Dr. Kaspar and Team would have to perform a toxicology and biodistribution study in mice to answer whether the doses given are truly safe in mice, and where the virus goes after delivery.  I think we all agree that additional models, including the pig model are good things to test a therapeutic in, but the simple answer is, It is not necessary for Dr. Kaspar to get his gene therapy into clinic based on the first call he and his team had with FDA.  The Sophia's Cure Foundation will continue to fund the SMA gene therapy program from Nationwide Children's hospital/OSU based upon guidance from the  Food and Drug Administration and the requirements they  deem necessary to move 
towards application for human clinical trials.


I spoke with Dr Kasper a little more then a year ago and the work they are doing is so promising, he took Skys name and our information to hold on to, for when they would be ready to do trials, this does not mean he will be picked when the time comes, but he is on the list.