First day of SMA conference

Written by TJ and Jaime | 25 June 2010

The first day went well. I had my chapter meeting at 10:00 am and it looks as if FSMA is making the switch from grass roots to a "big fish in a big pond". It's a good thing if we ever want to get any legislature passed or really get this disease a household name. It will take a few years and lots of hard work though.

So I got to meet Gwendolyn Strong! and Victoria and Bill too. G is bigger then I expected. She looks two and a half years old! She's got to be about 3x the size of Nora. It's amazing watching Bill and Victoria first hand ask G if she wants something and although I don't see the response they say 'Oh, you want up? okay Gwendolyn". It's an amazing bond to watch. Bill is taller and Victoria is smaller then I expected.

No sign of Lucy yet though. I did meet some of the other great SMA families today and had a nice talk with Shannon O'Brien. She's freaking awesome.

Here are two videos I took today.

Thomas Crawford, M.D. explains why it's called Spinal Muscular Atrophy
http://www.youtube.com/watch?v=FsCpdtE0mng

Leah crushes competition at the SMA powerchair relay race
http://www.youtube.com/watch?v=GS0ddBc6GmU

I want to get more pictures of the little power chairs the younger Type II kids have. I just have to find a way to get them to hold still so I can take their pictures. There are three and four-year-olds whizzing around everywhere in these chairs. The real young kids even have huge bumpers on the front of their chairs. One parent told me that without the bumper the chair will almost try and climb the wall.

Here are some pictures from today. I have no clue who the little boy is but he is the cutest. His wheelchair is so tiny! I could seriously put it on my key-chain.

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TJ arrives in Santa Clara, CA

Written by TJ and Jaime | 24 June 2010

well I'm here. Flying really sucks - does anybody actually enjoy it or are them some that just tolerate it better then others? I did luck out and sat next to a tiny woman on each legs of my flight. So I was able to win the silent battle of who owns the middle [shared] armrest. This is also my second official jet-lag experience. Once coming back from Hawaii on our honeymoon and this trip. It's 11:57 here but 2:57 am back home.

Good times. I have a meeting at 9 am tomorrow. Hopefully I can find some time to upload pictures during the day.

Jaime has only gotten a few hours of sleep. She [Jaime] put the heart rate alarm pretty so she would be alerted quicker if Nora wakes up. She said the alarm has gone off 6 times already which is odd. Nora spiking a high heart rate isn't a good thing. Maybe it's just that she misses daddy. Tomorrow a nurse should be coming out so Jaime can catch up on some sleep. If we had known we would have this nursing fiasco I never would have agreed to leave.

Here is an interesting article that came out regarding that drug Nora has been on. I'm not sure if I agree that it's a miracle like the article makes it out to be. We have no idea how Nora would have progressed without using Valproic Acid. READ THE ARTICLE

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No Nurse yet - but stander!

Written by TJ and Jaime | 23 June 2010

So Nurse Jennifer didn't work out. Jaime and I just didn't have the confidence in her. We found ourselves sleeping less with her on duty. I guess we are just spoiled by Nurse Kim and it's unfair to expect Jennifer to be exactly like her. So we have no night nurse yet again.

Anyway, I leave for the 2010 SMA Conference tomorrow. I'm torn up about leaving mostly because we don't have help for Jaime. Also, just being away from Nora is a really hard thing to consider. Jaime's mom is flying in to help out and we should get a few of the day shift covered by Nurse Kim. It's the nights I'm worried about. arg!

Nora has a new issue now too. On Sunday I repositioned her and her AFO boot got stuck on the bed and it cranked her knee a bit. Nora cried for a bit but then seemed to get over it within 10 minutes. Now her knee is pretty sore. We didn't exactly know what was hurting her - though maybe it was her hip at first, but then tonight I bent her knee (on purpose this time) so her heel almost touched her butt. She cried again so that explains where it is hurting. Direct pressure on her knee or compressing the joint doesn't hurt her, just bending the knee past 90 degrees does. I figure she pulled her meniscus. I have it braced with a little tape (old soccer injury trick I learned). Hopefully if we keep it stable it will heal in a few days/weeks. Poor girl. I hate seeing her cry in pain.

PT update! Nora tried out her stander with the Physical Therapist. She really enjoys it and Jaime has learned how to install Nora in the stander correctly (it's a pretty complex event). She looks really cute in the stander. I can't wait until we can put her straight up. That's going to be an interesting picture.

daddy out.

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Yay for fathers day!

Written by TJ and Jaime

I had a good fathers day. I slept in and cuddled with Nora in the morning then hung out on the back porch and blew bubbles. Jaime had put a special outfit on Nora for me which was too cute. Then Nora and I watched a little of 'G-force' (that movie about super spy guinea pigs) until Nora fell asleep. Then I met a fellow father and played a round of golf. I came home to pizza and a present! Mommy and Nora got me a new camera lens. It's a portrait macro lens which I'm going to have to practice a bit with. It was a great 2nd fathers day.

Nurse Jennifer is back tonight. She came 15 minutes early for her shift so I hadn't gotten Bentley prepared and he freaked out at the front door. His barking scared Nora and she started start crying with her BiPAP on. -1 point for excessive punctuality. This will be the Nurse's first 8 hour shift with us. We should know tomorrow morning if this will work out or not. I miss Nurse Kim.

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Happy Fathers Day!

Written by TJ and Jaime | 20 June 2010

Father's Day is defined as the day honoring fathers and celebrating fatherhood, paternal bonds, and the influence of fathers in society. This day means so much more when you are faced with a disease like SMA. TJ wears this hat proudly and does an amazing job caring for his little girl. Being first time parents, you always wonder how you are going to handle the new responsibilities, and is your spouse going to play an equal role in raising your children. That questions was put out of my mind the minute Nora was born. During her first few days home, I could hardly hold her because TJ was always hogging her, cuddling her and keeping her close. That still holds true today. I love the way he cuddle with her in the morning. I love listening to him read to her at night (even if it is Charles Dickens). And most of all, I love the father he has become.

TJ, I love you so very much and I know Nora feels the same way!.

Happy Fathers Day Daddy!

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