This morning I pointed out to one of Garrett's physical therapists, the one who does his poop therapy working on his pelvic floor muscles, that Garrett's upper legs appear to be different lengths and that Garrett is limping for a while in the mornings. I have also noticed his hips and shoulders do not seem to be even. Kevin, the PT, measured Garrett and lined him up to look at him naked, and said it appears to him that Garrett's femur bones are different lengths, so he probably wakes relaxed and very uneven, then compensates as the day progresses, causing his pelvis to shift and a shoulder to drop.....all not good things and can cause pain and long term damage. When I asked him how to correct it, he started talking about putting a staple into the growth plate of the longer femur and letting the shorter one surpass it, then removing the staple.....I got a little overwhelmed at that point! So we are getting a referral to an orthopaedic clinic for x-rays.
Then after a few errands, we got to see the audiologist. She put Garrett into the sound booth and tested his hearing for a long time. She didn't need to test to see if the cilia in his ears works now as that is done, and we know they don't work at all. She said that the auditory neuropathy stuff could be helped with the FM listening device and is working on ordering one for us. We are praying insurance will agree it is worth it....$2000. Meanwhile, Garrett's teacher's son, Bayler, has one we are borrowing to see how it works for Garrett....sweeeeet!! Thanks, Janel!! Then the audiologist showed me the hearing screening results that show his right ear is below normal for high frequency and borderline for the upper-middle frequencies. Hhhmmm. So she pulled up the same sheet from a year ago, and this has changed a good deal in the wrong direction. Bummer. While she isn't ready to slap a hearing aide into his right ear, she does want to re-test in six months to see if the trend is continuing or not. Meanwhile, we will see her again when the FM hearing device arrives. The whole sound booth testing thing seems to affect me in a weird way. My baby is closed into this booth playing a game that requires him to "listen carefully" and do things when he hears the "birdies chirp," and I am outside hearing his tiny, gruff little voice asking questions and telling me hello, and just seeing him try so darn hard to listen oh so carefully for something that isn't there sometimes. Just made me a bit emotional....hard to explain. Some of it is the very quiet sitting there for so long watching the test and realizing things are changing since the test took twice as long as it took last year. It hit me that things are shifting, not just mentally, but with hearing, bones, a liver enzyme off, a miracle drug we may never get the chance to try. It became so, so real for a few moments today. Maybe Mom was right this summer when she lovingly accused me of being in denial!!!
I did get some of the kiddos's last Christmas things picked-up, including electronic drums for Garrett...he will be so excited!!!!
Oh, and we were at McDonalds today in the drive-thru and he rolls down his backseat window and says to the smiling, cute blonde employee in the window, "Hey, I need a beautiful girl like you to kiss me on the cheek!!" Leave it to Garrett to send me off laughing!!!
Then tonight he was asking me to spell my name, then he came downstairs to show me a card he made me with MY NAME WRITTEN on it!!! And that's a LOT of writing!! I cried!!!
Godspeed,
CL
K is profoundly deaf in her left ear (so it can no longer be aided). Her audiologist has been recommending an FM system for years, but it is not covered by insurance...so no dice for us. I applied for a grant this year and I'm hoping it comes through! I hope you guys have success getting one!
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