Sunday, May 07, 2006

Progress

So last week was not nearly as busy as the previous one, thank God. This one will hold it's own, though.

At PT, Q's therapist and the OT in charge of orthotics were really excited to see that his thumbs are out. He's been wearing his little splints for about ten hours every night, and I'm working on the webbing between thumb and forefinger 2 or 3 times a day. He also gets rubs on his teeny little pecs, biceps, and lats and I'm trying to get him to cooperate with PNF (proprioceptive neuromuscular function*) therapy because it's benefits are 2-3 times that of just rubbing the muscle from one attachment through the belly of the muscle to the other attachment. Also, I started doing stuff to get him to actively touch his feet and then cross the midline with hands to knees and toes. I'm continuing to work to have his arms positioned appropriately when he's on his tummy, and he seems to be resisting that less.

The night before his last appointment, Q had awful reflux. He couldn't settle down for anything and when he finally passed out, I realized he didn't have his splints on. I can't get them on tiny sleeping hands--it's like trying to build with soft-set jello--and I wasn't about to wake him up after the evening we had. So I watched his little hands off and on throughout the night. His thumbs were outside his fists. But, best of all, most of the time, his hands were open and his thumbs were almost at the appropriate angle! None of this sounds like a big deal to the general public, but let me tell ya, the therapists and I did a happy dance right there. That much improvement in just two weeks is amazing, and it bodes well for the possibility of future improvement.

Based on all that, it would seem he's beginning to recognize that he has hands and feet and is beginning to initiate activity with them. Friday morning he grabbed his toes when I was working on his right side. Yesterday, a friend was holding him and he actually grabbed a Skittles package that she held up against his fingers!!

I feel so terribly grateful to have some formal training in massage. Otherwise, the learning curve, which is steep anyway, would have me unconscious on the floor with appendages flailing in the air. Oh dear. Now I'm having visions of dying cockroaches. Neat.

As busy as things are around here, last week was much calmer and the results of the effort expended obvious. It was a good week. We even made it to church earlier than we have since the punkin was born!

On Tuesday, Q has shots and measurements. Poor baby. This coming Friday he has his MRI. Big sigh. I am worried about the sedation, and keeping him hungry for that so he won't spit up and aspirate. I haven't heard from the anesthesia people yet, so maybe he won't have to starve. He doesn't do hunger well at all. I don't know many babies who do.

On another subject, I'm requesting prayers from the planet at large for the events of Monday. It's going to be a big day for my family and I desperately want there to be good things out of all this for the kids. If there was anything I could do to stop the trauma I would. I would give anything, anything, to be able to fix this for them... So I'm praying that there will be cool heads all around, that the people who will be in that room together will be compelled to do the very best things that can be done. And that I won't lose my mind while walking a road I never would have chosen. Your thoughts and prayers are appreciated.

Thanks for hanging with me in all this. The support, in all it's many forms, astounds me. You all are awesome and I will never be able to adequately express my abiding gratitude.

I'm going to try to get back here very soon and write more about the whole story of Q. In the meantime, have a blessed, calm, irreplaceable week. And remember to tell your family that you're happy they're yours.

Pax.

(*Edited 5/19/06: It's "facilitation" rather than "function." Doh. Hand slapping forehead. If you're interested in learning more about it, google "facilitated stretching," which also happens to be the name of class and textbook I had in massage school.)

4 comments:

Jubilee Academy said...

Carrie,
Many prayers have been said here for you and your family.

May God grant you strength, grace and peace through this horrible time - especially today during the court proceedings.

Blessings to you!
Cathy (from the WTM boards)

Under the Sky said...

Prayers here (among us all) for you too!! I did get your email and will respond soon. I wouldn't send all that, don't worry! :)

Thanks for the good news post on WTM--it is nice to see you are seeing the good side of the court system!

Warmly,
Kate

Olive Oyl/Pensguys said...

I've been following your story...I'm SO glad to see progress for your baby. :)

I would like to suggest something. Just to give yourself a little piece of mind, could you ask your dr. to not give ALL the shots at one time to your little guy? It might be better for his nervous system and if you tried to get them one at a time and let his system get used to one vs. a whole bunch at one time.

Just a thought
Penny (from WTM boards)

Anonymous said...

Carrie,
So happy that yesterday went well. Still praying for you and yours. Want you to know that, I think, I live fairly close so if I can be of any assistance to you, please email me.

You are welcome to email me even if you don't need assistance. :-)

lovin5kids @ msn.com (remove spaces)

Michele (mom24bz1g)