It has been a year since you was taken away from us by this evil thing know as SUDEP. It doesn’t seem like it has been a year already. Everything was just rushed after you passed away. It just seemed like a dream that I relive everyday. I miss coming downstairs to your beautiful smile. Dylan you are truly missed and loved my sweet angel.
Dylan’s birthday was March 25! I forgot to post about these cards from his grandmother’s! Thank you both so much for the cards and beautiful words for our Superman. We love you both so much appreciate everything you do for us.
My sweet Dylan’s birthday in on Thursday and it is going to be one of the hardest days since he passed away. He should still be here but this thing called SUDEP stole his life from him and those that loved him. We sure do miss you Dylan. Not one day goes by without thinking about you. Some days are harder then others but we manage to get through with all the love you left in our hearts. You received a birthday card the other day. It some dinosaur stickers in it.
The colors represent Superman and epilepsy! It is looking more beautiful everyday.
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.
This is a blanket his big brother Dacota made for Superman! He did an awesome job on it! It even looks like him. Superman is starting to feel a little bit better! Thanks for all the prayers and positive thoughts!
Found this yesterday when I was out shopping for Christmas. I just had to get it for Superman! He doesn’t seem to like to much but you can see that by looking at the pictures!
They took him off the ventilator yesterday, it was hard to watch him at first because he was choking and gagging a lot. He is doing much better today. Physical therapy came today and had him sitting up on the side of the bed first time in 21 days, he was getting tired from it. So he is resting now. He did have a fever overnight. So far today he hasn’t had fever. His blood pressure was a little low overnight. Baby steps but he his headed in the right direction. The chest Xray shows some improvement on in his lungs, but he still has ways to go. He has been doing a lot of wheezing today. I have been suctioning him a lot today, it is bring a lot of the junk up from his chest. He was happy to see you balls today but he didn’t grab for them yet. I think the chest tube is to painful for him to reach.