Last night brought a new realization for Jenson...the realization of his loss of independence. He is starting to eat more (and not throw it up) so first wanted to be moved to the table. Once he finished he wanted to sit on the couch. Then he wanted to help Sydney pick a movie to watch. Then it was back to the couch again. Each time he had to wait patiently for Doug and me to finish what we were doing and carry him over to the new location.
He finally lost it and started bawling. I asked him what was wrong. "I sad," he replied. "What are you sad about? Are you sad you can't walk?" I asked. This brought another stream of tears. I told him, "Jenson you will be able to walk again, it is just going to take hard work to get stronger. Are you ready to start trying?". He nodded his head yes.
Hopefully this is an example where breakdown will lead to breakthrough.
Walking is the long term goal. First we need to get him over his fear of falling (which I am guessing came from his legs giving out on him from too many tumors prior to transplant), master crawling, and then standing. But at least he has the desire again...a step in the right direction - no pun intended.
The FISH test is out with results due back either Friday or Monday. Will things be better or worse? Let's hope for better!
Kristin
Time to Remember
12 years ago
I just saw this quote on facebook that I thought might be a good idea:
ReplyDelete"The great news is, that isn't just arms [that are strengthened by a baby scooting] - "scooting" as you call it activates the entire kinetic chain from the hands to the feet. God wrote the book on personal training..."
Maybe Jensen needs to start his journey to walking by laying on his tummy on the floor reaching for balls like he did as a baby.
Good idea! We will try it. Thanks for taking the time to share it.
ReplyDeleteKristin
Prayers the chimerism testing news is good! Kristin our Sammi is post BMT for HLH and though the disease is not the same she has very severe osteoporosis and multiple compression fractures. Our insurance has paid to cover home based Physical therapy ( with immune compromise and other health issues we could justify the PT coming to us) Also Sammi has a rolling walker which a good PT could help your find the right equipment. Maybe you already know and have all this but wanted to share just in case it might be helpful info for you..
ReplyDeleteIf I can help at all please feel free to email...
Hugs and God Bless,
LeeAnne