Superman came home yesterday by ambulance. He is not cleared for car traveling yet. He still has his NG tube in and we have to cathe him now because one of his medications is causing him not to be able to urinate. So we had to get trained on the NG tube replacement and cathing him. Which is harder than we thought it would be. But we are home and that is all that matters. He seems to be adjusting to home life okay. Thanks for all the prayers and positive thoughts. Superman loves and appreciates all the love from everyone.
Superman has been doing awesome in therapy. He has been do well in his OP therapy, I think this is favorite therapy, because he gets to eat. They have been taking it slow with feeding. He has been getting a couple ounces a day of yogurt, applesauce, and pudding. In PT he has been working different things, like arm strength, walking and crawling. He is doing okay with this. He struggles with this part though but he giving his all. I am so proud of how far he has come since he has been here. The only problem is his sleeping pattern. It seems like every two days he will not sleep all night and he will stay up for 2 days and sleep all day the next day. When he does this he has an increase in his seizures, the only good thing is they don’t last longer then 20-45 seconds.Please continue to pray for my Superman. I would like to say thank you for your prayers and positive thoughts. Superman loves you all.
Superman says happy new year to all his fans and may you all have a blessed new year. He has been doing pretty good the past few days. We will probably be heading to rehab within the next week or so. Superman is going to Kennedy kreiger for rehab. I only plan on staying for 2 weeks that should give them plenty of time to do what they need to get him back to himself. Please continue pray and send positive thoughts and thanks for all the prayers!
Superman wants to say a big thank you for the wonderful donations that Michelle Belle collected to make our stay at the hospital more bearable. A big thank you to all that donated the wonderful gift cards, the parking passes, the check, snacks, and everything else. It is much appreciated. Please continue to pray for my Superman and send positive thoughts. Superman says thanks for all the love.
Thanks for all the wonderful cards and ornaments from marley middle school and the Acc classroom. Also a big thank you to Drink at the well for the Christmas card. Superman is doing okay today. He was having some problems with dstating this morning when the removed the bypap this morning. So they put him back on it. Thank you all for the prayers and positive thoughts. Please continue to pray for my Superman. Merry Christmas eve to everyone. I hope everyone has a wonderful Christmas tomorrow.
So Superman is running a fever again. The seizures are back again. They are not sure what is going on now. Running a lot of tests again. So, Thursday or Friday afternoon when he was getting his deep suctioning he aspirated and they think that might be the cause of the fever. They are trying to get the ball rolling to get him on the epidiolex the cbd approved medication. Oh not mention his room was moved again. Once again I am asking for prayers and positive thoughts. Thanks for all the love for my Superman.
So Superman has been receiving Christmas cards. They only check the mail once a week. But yesterday he received a present from someone and it was a special gift. Thank you so much you know who you are. Superman loves it. I will post more pictures later with his gift when he is more awake. They had to up his seizure medications again and now all he wants to do is sleep. Thanks to everyone who has sent cards also thanks for all the prayers and well wishes. He is continuing to make progress.