Saturday, October 27, 2012

Autumn Greetngs

Of course Bryce loves his little pumpkin gifts. Thanks Martha!
Happy Autumn everyone!.



We are very fortunate for everyone all for the support over the past month especially. It is easier to cope now that we have an expert team of doctors. The future is unknown, yet we remain hopeful. It is not easy to always be cheery and some days are and will be harder than others, so having friends and family to lean on is a tremendous gift. Thank you to all!!

Bryce's SMA Awareness Video and his Care Plan

Bryce Noah Amiel: Born January 26th 2012 - Diagnosed with SMA -1 at 9 months -

This post is temporarily being revised.

 
2014 SMA Awareness Video
 

                                           Byce's 4.5 year old video - Easter Egg Hunt 2016

                                                         Living with SMA - Our Story -
                                           




Today, Bryce is 4.5 years old. Doctors told us he would not live beyond the age of 2.
 
 
I believe my medical choices and home care "keeping him busy" and working with a variety of medical professionals and my home health team along with friends from Church and our faith, has given us the strength and ability to fight this horrendous degenerative disease.
 
SMA- Type 1: Dr. Finanger - Primary Provider - Neurologist
 
 


  In 2017 we may consider the magic rod surgery. Until then, we are still consulting with providers and parents. Its very important to maintain Bryce's quality of life - sitting up allows him that quality of life -
                                                                                                          
 
2016 - Bryce drives his power chair as much as possible, we have other sitting chairs for him - He loves me to hold him also - I know those days are coming to when it will be more difficult to hold him -so I do spend a few times a day holding him - reading a book play, talking, sometimes looking in the mirror we have in the front room and making funny faces.

 
 
 
 
 
 
 






Monday, October 22, 2012

Eastern Oregon

Eastern Oregon is so comfortable in the fall.
Walks are so fun. Bryce loves to see everyone and watch what people are doing. 

We went to Eagle Crest near Bend to get a new perspective and try to relax. Saw deer, played with toys, and relaxed a bit. Grandma was so generous with  making dinner, watching the little one, and helping out with physical therapy time.

Thanks Mom.


Bry Bry shaking his little dancing monkey in highchair






Oh Grandma - your so fun. Thanks for taking me for a walk. Its so beautful here. Great place to watch sunsets and ducks.



Tuesday, October 9, 2012

Play Time

Bryce is 33 weeks! Phew!! His terrible cough and ear infection has finally gone away. What a scary and worrisome month. We still monitor his breathing ability but overall we acknowledge his abilities as they are and we tell him everyday that he is the most perfect angel ever!

Since Bryce can't roll over or sit up without help we have been so creative with play time. I continue to carry him as much as I can in the carriers and we both really enjoy that.

We are playing everyday. Last week was his first time to the zoo. I think he loved the kids more than the animals but the sea lion and monkeys were great. Next time we go, we'll take pictures.


Over the weekend grandma Elaine got us a nice swimming device so he can enjoy more swimming fun. We have missed our swim classes but look forward to returning this Sat.

This morning, physical therapy with Early Intervention was very impressed that we are doing sign language, that we can still hold spoons, drop and throw objects from our high chair (that's a fun game... where did the spoon go?) Introduction this week to "b" words has been one of his highlights - he just giggles at the words "bubble gum" "baby" "boo" butner" "blue" "bottle" etc. He puts his lips together and is trying to say a "b" sound. Its the cutest thing ever.




 




Pillows help him be propped up so he can play or watch a dvd
Last, check out videos of play time below.







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