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″!
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!
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!
Even though I am very excited that Jameson now has his first set of prosthesis, I still struggle from within to understand why he has to start life this way. This was not MY plan for my child. So I am trying to prepare myself for the day that he asks me why he is not exactly like the other little kids. I found this poem and thought that it was a good place to start:
God looked down, another child
A smile so perfect, a
temper so sweet.
But Jameson looked and some parts were gone,
Did God mess up
and make me wrong?
God just looked at
this perfect child,
Himself as He just smiled.
taken time to make that part,
wouldn’t be such a work of art.”
would not have had time to make that smile,
To list your talents would last a
Your sense of humor, that belly
Where are these parts, you
have to ask?
You are so lucky, these
gifts of gold,
Those missing parts
are mine to hold.
Forever they’ll be,
close to my heart,
So as you live, we
are never apart.
Each time I move,
you’ll be on my mind,
child, you are quite the find!
not miss that part, you see,
always be safe and sound with me.”
This is a poem by: Kris Heims as adapted by Me. Such a beautiful piece, just thought I would share.
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!
Grabbing book and eating it:)
Pt with right arm.
Dad learning how to put prosthesis on.
Both arms on!!!
Amazing Team AAD (sadly, minus Shannon our favorite receptionist ever)!!!
Thanks to all of you that gave your love and support we are now finally able to start this journey!
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.
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.
Mommy and Jameson practicing with sleeve toleration.
First whole prototype arm fitting! This moment was BIG!
He instantly stuck it in his mouth:)
Both prototype arms on. Very surreal for mom and dad, holding back tears here.
More pt with both prototype arms on. He wasn’t quite sure what to think, but did real well.
Finished 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”!!!!