I've been trying to think of how to post this all to the blog, but I'm not sure I have wrapped my own head completely around it yet. So I'm really not sure what to say about it. But here goes.
On Wednesday both of Riley's occupational therapists surprised me with a meeting. They both feel that Riley has plateaued and that there is nothing more they can help her with. They want us to switch to a different therapist and see if she can help Riley make any more progress. The therapists are both sweet women and have the best intentions. But I wanted to fall at their feet and beg them not to give up on my baby! I refuse to believe that Riley will never be able to feed herself, throw a ball, open a door or do so many more things. I refuse!
The girls had their 6 year well visits on Thursday. Last year Riley weighed 29.4 pounds. This year she weighed 29 pounds. She did grow an inch and a half but lost weight over the course of a year. Obviously this is concerning.
She also failed her hearing test four times on her left ear. Hearing loss could be associated with CMV which Doctor Clark suspects may have caused her PMG. The hearing loss is one of my worst fears for her. We need to see an audiologist now. Plus, Dr Reed wants her to see an optometrist because of concerns about her eyes.
Just when I think I've got things handled, this is what happens for my sweet girl. As always, I don't want her to have any more challenges, any more doctors, any more tests. But her little body has different plans.
And those different plans have left me feeling very overwhelmed and near tears at the drop of the hat. I just keep reminding myself who is in control and to rely on Him!
I've repeated Phillipians 4:13 through my head a million times the last couple of days. "I can do all things through Christ which strengtheneth me." I'm so thankful to know that is true for both my sweet Riley and for myself! That part I've got figured out! But the rest of this is still tough to get straight. So I'll just have to keep you posted.
As usual, prayers are always appreciated!
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Sending prayers and hugs !! I know rough days too and am thankful that God is with us every step of the way. I did find in my search for physical therapists that each one has a different way. I was very pleased at Outpatient TIRR downtown. They now have a second facility in the Woodlands which we loved. One day at a time. That's all we can do. Love, Mrs. T>
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