Aqua therapy part deux

Written by TJ and Jaime | 02 July 2010

We had our second aqua therapy session today. Since we learned our lesson from the last session meltdown, we did not use bubbles this time.

The ankle weights we used where 1/4 lb foam padded weights. The therapist really tried to get Nora to propel herself using her arms. It's funny to watch because she extends her index finger when she gets close to the object she's headed towards. Her little finger cuts through the water like a little SMA shark fin. The therapist also used that long float under her and she called it her horsey. She made Nora hold on to it otherwise she's stop moving. I was shocked that Nora caught on so quickly and held on. Nora concentrates so hard when she's in the water and it's really rewarding to see our daughter actually excelling at performing the exercises. I think only a SMA parent would truly know what I'm talking about.

I also got a shot of Nora's new webkinz turtle she sleeps with. It fits perfectly to keep her chest open by separating her arms when she's on her side and the head helps hold her pacifier in. Who knew? Thanks Ginger!

Oh and Oprah didn't call but our new favorite group the 'Tennessee Justice League' called and they want me to talk to the governorial candidate 'Bill Haslam' about getting TN to re-adopting the TEFRA/Katie Beckett waiver. Basically make him make another campaign promise. He'd sure get our votes.

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I'm everywhere!

Written by TJ and Jaime | 01 July 2010

So I checked GwendolynStrong.com today (as I do everyday) and I saw myself on their website. Now I'm officially famous.

Then I went and got my hair cut and what do I see on the counter? If you are a man or a woman or a child in need of a hair cut, please visit your nearest Sport Clips. I've gotten my haircut from them exclusively for over a year now. It's my 'man pampering' since they shampoo and massage you. Anyway, they did this on their own, so I feel it's well worth repaying the kind act by sending business their way. Sometime random acts of kindness really take you off guard.

What's next? I better keep my phone close this weekend so I don't miss Oprah's call.

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Wisconsin Grandma perspective

Written by TJ and Jaime | 30 June 2010

Jaime's Mom (aka Grandma Marka) came to help out while I was at the 2010 SMA Conference. Grandma is a super cook. I'm not saying her concoctions are healthy, but they are plentiful and really really good. So we now have enough leftovers to eat for a few weeks now. Nora totally loves her Grandma and maybe that's where Nora gets her hair color? who knows. Thank you so so much for taking time away from work and the rest of the family to help us out, we really appreciate it!

Okay so the perspective part. During the SMA Conference I had a discussion on how small Nora is. Lucy and Gwendolyn are HUGE compared to Nora. It's more noticeable in their hands and feet. I mean, you can't take a picture of head circumference, can you? So to help for comparisons sake I photographed her next to a business card (standard size). Now we just have to have Lucy's picture to compare.

The hair bow has turned into a hobby for Jaime. She literally has a different hair bow for each of Nora's outfits. What can I say? Mom likes to accessorize Nora. I'm cool with it since they are really cute.

Nursing. So that nurse we had while I was away quit on Monday morning. That sucks! We are trying out a male nurse for a few hours tonight. I'm not sure how I feel about this yet. We'll have to see his bedside manor.

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Last day of SMA Conference

Written by TJ and Jaime | 27 June 2010

It's a odd feeling I have now - sitting in the hotel room packing my bags and setting my alarms. There is a really strong feeling of sadness. Sadness for already missing the SMA family I've been a part of for the last three days. It's not anything of anyone in particular, I'm missing but little pices of everyone. When I planned this trip I thought it was going to be all about the Kids. I'd learn more about SMA and how to better care for Nora. I didn't realize that this conference was more about the entire familiy. Seeing parents with their guard down enables you to let yours down as well. I didn't pretend to be anything I wasn't - it's not like a sales convention where you are there to represent your company. This is about representing yourself as yourself. So if someone asks you how you're doing... you can respond "I'm scared, everyday" and not even feeling a hint of worry of embarasment about that the other parent may think. The sessions were informational - dont't get me wrong, but the simple interactions with the staff, volunteers, kids, and parents is the big takeaway. For the first time since we started this terrible SMA journey, I felt at home with the disease. We are all unique, but the one constant is this bond we all share. Before being on a message board or exchanging pictures via email I felt a connection grow between families. Now taking those connections and strengthening them in person has made a huge impact on me. I don't know why I'm so sad right now. I despiratly miss my Nora and my beautiful wife and I'm a little taken aback and how much I feel myself missing the SMA family I'll leave tomorrow.

I can't begin to thank everyone for this experience - FSMA expecially for the opportunity. It has changed my life and how I see SMA forever.

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Another great day @ conference

Written by TJ and Jaime | 26 June 2010

So the day started off with a SMA Type 1 lunch (yes, I had to work late into the night so I needed to catch up on some sleep). The lunch was great and I got to sit with the Lunts, Strongs, and Calafiore's. Hayden Calafiore is another SMA child I really wanted to meet. She is the cute blonde [Stroller] next to the cute blonde [Jennifer - Mom] across from the cute blonde [Victoria] holding hands with the cute strawberry blonde [Gwendolyn].....Sheesh! We often talk with them on SMASpace. I was truly lucky to be invited to their table. The lunch conversation centered around nursing and doctors and equipment and it was interesting to learn that Califorina blows almost as hard as Tennessee for SMA related healthcare. I always thought that every other state is so lucky and it must be so much easier - but it is not true. The only thing the system has done well at is sucking universally. ...but I digress

I got to meet Chad and Cherisse Lunt from the blog we are totally addicted to 'Into our everyday'. More importantly I finally got the meet Lucy; who is soooo much more cute in real life. Seeing her in person, I really don't think she looks as much like Nora as the pictures seem. She looks like Lucy! Her eyes are so impossibly blue and huge and filled with so much life, intelligence, and precocious mischief. It's so funny the way she tucks her bottom lip behind her teeth and looks around at everything. She is much bigger then Nora too - I guess I expected her to be about the same size since they are so close in age. Seeing Lucy and Gwendolyn alone has made my trip totally with it.

The afternoon was spent at the Orthopedic Complication session which but both informative and terrifying. Seeing xrays of children with pins, screws, rods, and exceptionally curved spines was so difficult to take in. I tore my heart to shreds picturing my little Nora with this inordinate number of hardware drilled into her little legs and back. SMA really just never stops it's relentless attack on our children's bodies.

In the evening we had the big banquet where myself, the Strongs, Lunts an two dozen others were called up on stage to honor our fundraising efforts. It was really thanks to the Strongs for creating Unite for the Cure for which this honor was for.

So tomorrow is going to be Occupational Therapy - Optimizing Function and Fun [morning session] then Physical Therapy, Bracing and Exercise [afternoon] then Primary Care: Staying connected with your primary care provider (PCP). Then finally, to wrap it all up, the Kids Carnival and Bucket Auction in the evening. Expect dozens and dozens of pictures.

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