It has been a relatively decent day with Robbie. He had a better night last night and made it through the day without any major difficulties. It was a full day of muscle spasms in his arms and legs that caused continual discomfort but nothing so bad as to cause him to scream. It takes two of us and often 3 or 4 just to be there while he is awake to rub his ankle, foot, calf, bicep, shoulder, hands, fingers, forearms or wherever the next cramp hits.
Our boy has had an absolutely amazing attitude throughout the day. His day is so hard but he is doing everything possible to bless those who are around him. He’s hugging his doctors, nurses, family, and friends. He signs “I love you” and “thank you” throughout the day, often during one of his spasms.
He really worked hard during speech therapy today and we are happy to say he was able to drink some without “dribbling” and even ate two small bites of pudding. Eating was a challenge as he is still unable to move the food to the back of his mouth well but he worked SO HARD at it. His spasms kept him from PT and OT today.
He had a very painful botox injection in his calves which caused much crying and many tears. These injections, in 2 to 3 days, should help relieve the pain in his cramped-up feet and ankles and, in 3 - 5 days, should allow his feet to relax so that his heel can touch the ground when he tries to stand. This is something our rehab team asked for as they have been unable, during physical therapy, to get his feet to flatten out.
PLEASE PRAY FOR HIS SURGERY TOMORROW!
He will be having a feeding tube surgically connected to his stomach tomorrow and will be undergoing general anesthesia for it. This will, in the long run, make things easier for his recovery and rehab and possibly allow him to go home sooner. The next day or two will be tough though, so we ask for your prayers for strength.
We are in our little apartment and allowed our brains to veg-out on a bit of silliness as we watched part of American Idol. We are exhausted and are quickly heading to bed.
We love you all and continue to praise God for His big family who are supporting us.
Grace and peace,