We decided to plant a memorial garden for Dylan! We planted all kinds of flowers. Mostly the colors of Superman. We have a few purple flowers for epilepsy.
Superman finally got his new wheelchair yesterday. I am happy with it because he can be more comfortable now. Superman would like to say Happy Birthday to his big brother Dacota.
He finally got his go talk 4 the other day. Now we can work on getting him to Express himself. He didn’t want his picture taken as you can tell. At least he is smiling in the one picture. I am so happy he is finally feeling better as well.
Superman had a good time at his cousin’s 13th birthday party today. He got to enjoy chocolate and vanilla ice cream today. He took a little nap for a little while. It was nice to see everyone. I hope the Birthday girl enjoyed her day. It will be a year since Dylan was hospitalized on coming up on Halloween. He, still isn’t back to his normal self but is continuing to improve slowly.
Superman had fun at the pumpkin patch! He helped pick out a pumpkin to carve. The only thing that wasn’t fun was all the bees everywhere. They had lots of fun stuff to do. Hayrides, a little haunted house, music. They also had a store you could buy fresh vegetables and pies. The pumpkin patch we went to was Webster”s farm.
My Superman is growing up up to fast. I can’t believe how much he has changed. He is so handsome.
This guy right here has a swallow study coming up this month. Hopefully he doesn’t end with any respiratory problems between now and then. We was told if he does have any respiratory issues the appointment would be canceled. His study is on July 19. So please keep Superman in your prayers and positive thoughts that he stays healthy between now and his appointment. This will determine if the ng tube can be removed. Now all we have do is get him up on his feet and walking on his own.
Superman had a rough night. His blood pressure kept dropping down to 70/30 they had put him back on the norepinephrine to help with that. He is also on the c- pap instead of the nasal cannula. He has been resting most of the morning. Oh yeah that’s right it is Thanksgiving, Happy Thanksgiving everyone from Superman at John Hopkins. Please continue to pray for my Superman and thanks for all the prayers and positive thoughts.
So, Superman is doing a little better. The good news is that his seizures are under control finally. They removed the continuous EEG yesterday. He had the continuous EEG on from October 31 to November 15. Now to recover from pneumonia. They put a chest tube in Tuesday night and it wasn’t draining much so last night they TPA in the chest to help break up the pocket of infection. I am hoping that does what it needs to do. If that didn’t work then the next step is surgery. My question still is why did it take 14 days to diagnose this pneumonia and no one can give a good enough answer why. Please continue to prayer and positive thoughts for my Superman Dylan! Thanks for the prayers and positive thoughts!💜