Jameson at 8 Months

Jameson adds so much joy to our lives!

At 8 months, he loves playing in his excersaucer, riding in the backpack, the stroller, and rolling around on the floor! With his new prosthesis we are working on crawling and without them he does a really great scooch! I have a feeling that in no time I will be chasing him all over the house. They certainly do grow up way too fast.

He started saying “da da” a few weeks ago and continues to do so about a million times a day! So exciting to hear his first word. And soon after that he started to say “ma ma ma ma”,but this only happens when his is very tired and a bit whiney. I think that that goes with the territory of being the ma ma:)

Jameson now has five teeth, two down and three up. And I am pretty sure that the six one is also well on its way. His “teething days” are not fun for anyone. I feel bad for the poor baby, it must really hurt. We will all be more than ecstatic when this teething business is over.

At his last check up, he weighed about 19 lbs and was in the 97% for height. I think that he will be a tall boy, just like his great grandpa who was 6’4″!

teeth!scootch

rollin on floor

Exersaucer

back pack

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Look Mom “Hands”!

Jameson has exceeded my expectations on how well he is doing with wearing his new hands! We were told by EVERYONE that the biggest reason little kids reject their prosthesis is that there is a lack of tactile sensation. Which makes perfect sense. So because Jameson can not “feel” things with them we were a little worried how he would react. But it is incredible, it’s as if he is using them as a tool just like we had hoped he would. I could not be any more proud of my baby boy!

My husband Jim also impresses me, he is such a great daddy taking time everyday before work to help me with pt time. He is amazing with Jameson,the two of them are best buds!

dad pt time

riding tractor!

riding tractor 2!

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!

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”!!!!

First Set of Little “Hands” Day 1

This was a long week, but incredible things happened!

First of all, we discovered that Jameson was getting his top two teeth the morning of departure. Not good. Almost 400 miles in the car with a teething 7 month old who hates his car seat = quite unpleasant times. After 7 long hours we finally made it to Portland where we stayed with some good friends who also have a baby! We thought this is going to be great, the two babies playing together, entertaining each other, and sharing toys! Guess again, it was more like jealousy, setting each other off into crying fits, and both waking up at all hours of the night. Luckily for our gracious hosts we were up early and gone everyday, this allowed them to have some peace and quite.

Day 1:

The Advanced Arm Dynamics team eagerly awaited our arrival and welcomed us with open arms. They work with one patient at a time to provide the best possible care and treatment. Their policy is wonderful and meant that the entire place was open to us and we could make ourselves at home. This was especially important with a baby, it allowed us the freedom to make bottles, bring in mass quantities of toys, and provide him a quiet place to nap!

Very cool fact #1: Jameson is their youngest patient ever!

Back in September we had made a long-term life long prosthetic plan for Jameson with Mac (our Prosthetist) and Kerstin (our Occupational and Physical Therapist). Basically this plan involves fitting Jameson with many sets of prosthesis over the course of his growing years. Each set will be completely different and custom-built just for him.

In the original plan we had decided to start with a basic set of passive “baby” arms that could be moved manually (by us) straight or bent depending on the task at hand, ie. crawl, hold bottle, grab toy etc. But coming in that first morning Mac had come up with an even better design as he was not happy with the original one. This meant that Mac and his technician Cullen would be building this set right there on site in the coming week.

Day 1-Step one: making a silicone lined sleeve for each arm, this is to protect Jameson’s skin under the prosthesis.OLYMPUS DIGITAL CAMERA

Step two: pt and working with the sleeves to make sure Jameson would tolerate wearing them.

pt with sleeve

more pt 2

Step three: casting each side to make a mold for the prosthesis.

casting

Step four: more pt and mom and dad learning to put sleeves on while Mac and Cullen work in the shop on the prosthesis.

more pt

End of Day 1-Step five: sleeve is covered with a sock to help sleeve fit snug in prosthesis, Mac here fitting prototype upper arm part.

OLYMPUS DIGITAL CAMERA

More to come in next post….

Baby Steps

At 7 1/2 months old Jameson should be on the verge of crawling, but he can not. Though not for lack of trying, the arms he was born with just won’t co-operate. Grunting and groaning he gives up. Instead, he wants you to hold him so that he can stand and take baby steps. I don’t blame him. I tear up watching his attempts at crawling and wonder why this has to be the way my baby starts life.

Tomorrow, we leave for Portland and it could not come any sooner! With all his current frustrations going on it is perfect timing for our trip! FINALLY, we get to start the process for Jameson’s first set of little “hands”. This will not be an easy four days especially for a young baby. The arms will be custom-built for him and he will not have the finished pair for another four weeks. But, in the mean time we hope he will receive a set of “practice” arms to get him going on this intense learning process.

Even though we are excited to begin the journey, there is still a long hard road to travel. As we set out, we are very grateful to the people who have shown such love and support to our little family! This has helped me to remain strong and be able to show my son how to reach for the sky, no holding back!!!