We’ve Got This!

It’s been a week exactly since we’ve been home and we have been working really hard at physical therapy. We take each day at a time (depending on Jameson’s mood) but try to maintain a somewhat regular schedule of wearing the prosthesis. We are doing one arm at a time switching back and forth and will work up to wearing both very soon. To make sure he does not reject them, the time he is “wearing” must be very positive for him! During wear time: we play fun games that help him utilize his new hands, watch his favorite videos, congratulate him often, and give lots of hugs and kisses. Even though the arms are a bit difficult for mom and dad to put on, Jameson is doing really well. I think that we’ve got this down! By the time we need his next set, which will probably be in 5-7 months, we will all be pros!

pt at home 1

pt at home 2

pt 3

He is really good at pulling the prosthesis up to his mouth!

He is really good at pulling the prosthesis up to his mouth!

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First Set of Little “Hands” Day 4

Day 4:

After many long hours and very hard work, Mac and Cullen were excited to present Jameson with his ACTUAL first set of prosthesis. Were we so amazed that they were able to design and fabricate his prosthesis in a matter of days. Originally, we thought it would take 4 weeks or so to get the finished product. But, after seeing the frustrations he had and the struggle to grasp, they knew that is was urgent to get him started right away.

So, we are excited to say that Jameson is the proud owner of his first set of little “hands”! Now, the hard work begins. At home physical therapy will be a wear schedule. This means we will schedule in time everyday to wear the prosthesis while playing, holding the bottle, practicing sitting, crawling etc. This set of prosthesis however, are not entirely operational and are intended primarily to help Jameson get ready for a set that will be fully functional. So in a sense these are “practice” arms;  and practice we will!!!

Finished right arm; practicing with bottle!

left arm

Grabbing book and eating it:)

book

Pt with right arm.

pt rt arm

Dad learning how to put prosthesis on.

learning how to put on

Both arms on!!!

both on!

Amazing Team AAD (sadly, minus Shannon our favorite receptionist ever)!!!

team AAD

Thanks to all of you that gave your love and support we are now finally able to start this journey!

First Set of Little “Hands” Day 2 & 3

Day 2:

Despite teething and not getting great sleep, Jameson was a champion patient! He did a great job during his physical therapy with Kerstin. In fact, she is his new “girlfriend” flirting and smiling at her all week! He tolerated quite a bit of time wearing the sleeves and did well with each fitting as Mac and Cullen slowly molded and shaped each part of the prototype arms.On day 2, they had finished half of the prosthesis, the part that fits onto Jameson’s upper arm over the sleeve.

Day 3:

As previously stated, Mac was not happy with the design for the first set of passive prosthesis. He explained that because Jameson has no elbows, the original design would have been way out of proportion and less flexible. Even though this set is intended for Jameson to “get used to” having something on his arms, rather than completely functional, Mac wanted them to be better! So he and Cullen designed an “elbow” for him that would not only bend, but swivel side to side and be more in proportion. By day 3, the full prototype was put together but far from finished.

Very cool fact #2: The prosthesis design that Mac and Cullen built for Jameson is the first one of its kind! Only one in the world:)

Prototype upper arm fitting.

day 2 upper arm

Mommy and Jameson practicing with sleeve toleration.

sleeves

First whole prototype arm fitting! This moment was BIG!

big moment

He instantly stuck it in his mouth:)

i want to eat it

Both prototype arms on. Very surreal for mom and dad, holding back tears here.

135

More pt with both prototype arms on. He wasn’t quite sure what to think, but did real well.

pt w/ prototype

Finished prototype arm.

prototype arm

By the end of the third day we were all exahausted. Our amazing team however, stayed late to keep working on the arms. Next post will have more about the finished pair of little “hands”!!!!

In the News

We were completely surprised when two local news stations came to interview us at our pancake fundraiser. The reporters were so touched by our story that they were immediately on board to help spread the word of Jameson’s need. Despite being completely caught off guard, unprepared, and nervous our interview went very well. I had to pull incredible strength from within just to hold it together and not cry. It has not been very easy for me to talk about. I always try to put on a brave face, especially in front of my son.

That Saturday evening KXLY News channel 4 ABC-affiliate and KHQ News channel 6 NBC-affiliate aired our story. Sunday morning we were flooded with well wishers, advice, and kind donations. The overwhelming love and support that came from our community was incredible! One of the most touching donations came from a 6 year boy who told his mom that he wanted Jameson to have $5 from his piggy bank. I had tears in my eyes. Every donation big or small means the world to us! Click on the links below to see the interviews that aired on TV!

Hands For Jameson. and http://www.kxly.com/news/video/-/116140/-/rclegbz/-/index.html?v=32401

During Interview