We are trying to get back into the swing of things again.
After being sick for what feels like forever, getting a back into the swing of things is a little bit more difficult that I wanted!
Daniel seems to be growing up some and is refusing the naps that he use to take, he is not consistent. He doesn't understand that mommy is older and needs naps! I love napping.
So while we are not doing some of the things we were before, we still have a lot on our plate. I can't figure it out but still seem equally as busy.
Lokomat therapy is over. We did 8 weeks (approximately with all the sickness) and I can certainly see that there are aspects that have gotten better in Daniel and perhaps a few things that might have gotten a little worse. But I can't say for certain that the things that got worse are because of the Lokomat or the fact that he was sick off and on for about a month and he grew taller. Unfortunately when there is a growth spurt, the bones grow faster than the muscles so the muscles in the legs get tighter. So we are stretch, stretch, stretching. Hoping to get something from the doctor for casting. We shall see.
We have scheduled appointments with the gastro guys to further discuss a feeding tube for Daniel. This is in a few months but until then we have to keep Daniel healthy, which means less time playing with friends and still doing the homeschooling routine.
Daniel also got a new "suit" to wear, and we are starting off slow. It is a DMO that fits his body snug like a girdle. It pulls his shoulders back and straightens his back (help with future possible issues with the spine), and just gives him some overall trunk support. When there is better trunk support you get better arm control. So basically we are doing an hour to 1 1/2 hours in the morning and then again at night.
There seems to be a ton of things going on that I haven't even touched on yet, but heck I'm overwhelmed with it most of the time, so I'll just give you those few things that we are working on this year so far.
8 comments:
What DMO suit did you get? Max has had two sets of Theratogs, that have worked well...but now we're looking at a TAOS system.
Busy, busy! I loved hearing about the lokomat--I'm sure it really helped cement some good movements in Daniel's brain.
sounds like a great new year. That suit thing sounds pretty awesome.
All the best in the New Year!
Okay, I missed whenever you showed the DMO suit - would your leave the post url here in comments so I can go back and see it?
I know and like Theratogs, and I think the TAOS system has real promise. In fact, the TAOS company is demonstrating here in town this week, again.
Barbara
After surgery Trevy went from two naps daily down to one. Girl...I have no clue how I'm managing it now! I can totally empathize!
...danielle
You and I are definitely in the same book, nearly on the same page! I'm still practicing my swing, getting over illnesses here, therapy and more therapy... It never ends and all I want to do is sleep.
On another note... Yay for the DMO's. Hope they work like a champ for Daniel. Sure do miss you guys!
Hey there. My Max also had a Theratogs suit that worked well. It was cool to hear about the lokomat. And, Melanie, I am with you there, I need naps! It was a sad day when the kids stopped taking them....
xo
The lokomat sounds amazing! I bet he learned some great stuff! And theratogs sound pretty great too. Hope all goes well with that.
I know what you mean about being busy. Since the new year began, I feel like I have been running nonstop and really have to wonder what I have done!
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