Fall is finally in the air here in Arizona!
It makes me want to get back to things that I have left unattended. One of those is a long needed update on this blog!
Max has been doing some fine things.
Mom has had him up in a wheelchair. When he is in the chair he can go into the courtyard and soak up some sun and good Vitamin D rays. He seems to really like this. He also raises his legs one at a time when he is in the chair. Mom calls it "workingout". He seems to be getting stronger and more controlled as he does these workouts.
He has a great support group (of ladies, go figure!). These sweet ladies come in and massage, treat him with essential oils and help him stretch. Mostly they bring hope with them. They believe in him and cheer him on to do better.
Max's room has a large exterior window that faces a vongavilla bush and a walk way. About 2 weeks ago John & I took the kids and Buddy (his dog) over to visit him through the window. He really seemed happy to see them. He kept bobbing his thumb up and down. Sophie, my 4 year old, was so happy to see Uncle Max. She has really missed him & felt sad whenever we would go without her, which is always. Hospital rules are no children under 12. Max would call her his little Sagitsarious (both their signs), and "So Fo". She said he looked like an angel. She also couldn't get over the fact that Grandma was a Doctor! (she was wearing a protective gown, gloves and mask)
Max is also impressing us with his swallow skills. The have multiple tests he must pass to be able to eat. He is trying so hard. They started with blue ice chips. The blue dye helps them to see if he has aspperated any. So far he hasn't. He also has tried to wrap his mouth around a spoon and swallow applesauce. He can't quite do these yet, but you can see him trying. His chin quivers as he struggles to regain use of these muscles.
Max has also started using a talking collar on his trech. This allows the air to go over the voice box so he can speak. It means he must breath threw his nose and mouth, which is different for him and will make him tired. He can only have the talking collar on when one of us is there as it blocks the airway. He makes a good groan and his yawns sound like his voice. He also struggles to make an "Mmmm". Which makes us all happy since most of us there start with an M.
Mom, Marla, Melissa, Michelle, Marla (funny, huh!) and Carol.
Mark was also here this week. He is so sweet with Max and would like to take more care of his brother. I think he feels a need to spend more time here, but he already splits himself between Newark and Missouri. He has also been a fun Uncle while he was here. He swam each day with the girls, even the last day when it cooled down and they could only take it for 30 minutes. He also taught them some cheer stunts for which Unlce Mark is famous.
Last Friday Max had a seizure. They called it a Grand Mal seizure, but I am not sure the criteria. Luckily that evening Melissa was with him and was able to call help. None of the machines registered a change. We are not sure if this is a solitary incident or if it is linked with smaller seizures which usually manifest as being unresponsive or "spacey". This would be hard for us to differentiate as he has moments where he is cooperative and aware verses those other frequent moments that would qualify as unresponsive. We haven't seen an other seizures, but they now have him on a preventative medication. (Which Mom is fighting because of it's ill effects.)
As we approach the six month mark tomorrow we feel encouraged. He seems much healthier than last month. All illness seems to be at bay, even if we still have to wear protective gear and keep him in a single bedroom.
We don't mind that much. We are grateful for each day and moment.
