Dear family and friends,
Grayson did not sleep well again last night and as a result it took a fair amount of cheerleader-like enthusiasm to keep him energized and engaged today.
Our current overarching goal is working on stamina – both in terms of physical stamina and the ability to mentally concentrate and stay with an activity for longer periods.
Today's therapies included significant efforts in the following areas:
Grayson bathed and dressed himself, brushed his teeth and SHAVED!! (Yes, he still has his mustache and goatee.)
There was lots of walking, bending (for balance) and balloon and ball tossing with progressively more heavy balls to strengthen his arms.
The whole team is working to encourage Grayson to speak more – and my personal goal is having him discover how to increase his volume (all those years of singing must pay some dividend now).
Grayson spent more time writing today, can say the alphabet and count to 10 (though barely audible). Written word and number matches are getting much easier as he breezes through the exercises. We know they will get progressively more difficult.
Afternoon therapy sessions were interrupted when the pesky afternoon fever spiked again. Concentration quickly faded as the fever rose and yet sleep still eluded him. As a result, the late afternoon was filled with another series of cultures, x-rays, and about six blood tests. Results tomorrow.
The highlight of the day for me was when the doctor authorized the removal of the tracheostomy. After eagerly waiting all day, we received word that the doctor couldn't fit the removal into his schedule. It is now planned for Tuesday morning.
The highlight of the day for Grayson was when the speech therapist gave him several spoons of water. He learned quickly to say "more". What she doesn't realize is that each time he brushes his teeth when she isn't there, he scoops water with his hands to his mouth and enjoys the sweet taste we take so much for granted.
I pray for healing sleep for Grayson tonight and that no serious infection prevents the trach from being removed tomorrow.
I give thanks for a loving husband who is such a good father and I even give thanks for the job that takes him to St. Louis this week. I miss him.
God's grace and peace to each of you this night.
Regina
P.S. Yes, Grayson does know that Pete Carroll is leaving USC. You should have seen the shock on his face. Something was definitely not right in the world.
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When Grayson registers dismay at the vagaries of USC football... what a WONDERFUL sign! I *told* you there's a lot going on in that head. Solving the communication problem is a whole different kettle of fish than solving a cognition problem.
ReplyDeleteAnd speaking as someone who has a lot of unwelcome fatigue from his "neurologicals," it's a pesky problem, and one that I've not yet found the answer to. But I can also vouch that being around nice, friendly, generous-spirited people makes a HUGE difference, and that a lot of problems melt away when you can smile.
Even from this distance, I think that things are looking up! Courage!
Hi brant and Regina:
ReplyDeleteLike Mr Parker, and Grayson, I fight fatigue as a result of my neurological calamity, and it is "pesky", but it is just something we all get to deal with...it could be much worse, and the Lord is a huge source of strength and motivation.
Your encouragement to Grayson is so important and supportive. I'm glad that he is aware of the changes at USC football...things do change, but I bet that USC football will be just fine under the guidance of the next coach...to the shagrin of my Ducks!
In Him,
Doug
Great to hear your 'voice' too, Regina! How I would love to give you a big hug - I'll send one across the miles. Being able to count and say the alphabet....those are foundational skills upon which literacy is built. So Grayson is awakening long known things that have been sleeping for a bit. May it continue!
ReplyDeleteLove,
Robin G.