Alex is excited that he gets to sleep in tomorrow! He LOVES going to therapy and shares stories at night about his day with laughter and smiles. It's sooooo nice to see him in some state of normalcy. Today I got a phone call from Alex because he wanted me to bring him some lunch, lol. I missed the call so I had to call him back. He gets lunch at his day program... they actually cook every day and today they were having meatloaf and I guess he didn't want it, ha! Well, by the time I realized I had a missed call and called him back.. lunch was over and he ATE it... imagine that! He informed me that I needed to bring him something to eat when I picked him up because he was starving. He instructed me over the phone to write down his order... Krystal Chick meal plain, and told me to emphasize PLAIN when I ordered. His brain is quirky at times and almost OCD with certain things.... half the time Randi and I don't know if we are coming or going. Brooks is getting a taste of it today....... bless his heart. Sit me up, move me, put a pillow under my foot, scratch my head, give me some water, clean my trach, clean under my trach, sit me up, fix the pillow under my foot, pull the sheet over my feet, pull the covers up to my shoulders, fix the pillow under my foot.... and when he asks he says it like this... "can you please fix the pillow under my foot, please.... please and thank you mom...ok?" Everything is please and thank you at the same time. I rather that than repeating everything 3 times... aaaaaaaaaaaaaaaaahhhhh. We still can't say "you're welcome" when he says "thank you"... we still have to say "anytime". But again.. atleast it's not in sets of 3!
Childrens Miracle Network donated some tickets for us to go to Disney On Ice tomorrow... YAY! Alex is having me pack his ear plugs just in case it gets to be too much for him. PRAY that we make it thru the whole show PLEASE! Going somewhere isn't an easy feat... it takes lots of work, TIME and coordination so I really really hope all goes well and we don't just pack up and go downtown only to turn around and come home. We take for granted how easy it is just to pop in the car and go somewhere.... our world has been turned upside down and the way we live life is completely different today than it used to be. BUT ALEX IS ALIVE and no matter how long it takes to go somewhere or how tired I am at the end of each night.... there are rainbows in my skies and the sun is shining bright because I THANK YOU GOD FOR ONE MORE DAY WITH MY HANDSOME BOY!
Chad is our hero today! He made it possible so that we could get a new car that is wheelchair and Alex friendly. Best part of the deal is that my car note didn't change! EVEN BETTER ! More car for the same amount of money... heck yeah! Alex loves it and the fact that he can transfer pretty much by himself and has enough leg room to wear his brace on his leg if need be is great. THANK YOU DADDY CHADDY... WE LOVE YOU! Atleast now Randi and I won't break our back trying to pull him up into the jeep, lol! We now actually look like we know what we are doing and Randi doesn't have to worry once she leaves.... WE GOT THIS.... somewhat lol!
Alex has really been in high spirits and maybe alot of that has to do with him being home in his own environment. Plus the fact that he loves the program and the people there. He still has his moments ... don't get me wrong, lol... he is still the fiesty, spicy Alex you know and love.... just with a bigger twist sometimes more than others... at times... unbearable... but I can say that Randi and I have been laughing alot more now that we are home and his demeanor for the most part is positive.
He is tentatively scheduled for laser surgery on his scar tissue around his airway... THIS WEDNESDAY the 14th! Please pray that all goes as planned and for a speedy recovery so that nothing stops his progression with getting the trach out when he gets his cranioplasty surgery on the 22nd of this month. I think it's out patient but I don't have all the details yet... will have to give you all that once surgery has been confirmed tomorrow. Lot's going on this month... please just continue to pray... the prayers are working and we still need them on a daily basis.
Looking forward to sleeping in tomorrow past 6am... hopefully Alex does too... PLEEEEEEASE! Tomorrow is going to be a fantastic day... hoping you all have a fantastic Friday as well.
ps.... CAR WASH! Jessica Skaggs emailed me that she is doing a car wash for Alex at the beach this SATURDAY, April 10th, so if you live at the beach and need a car wash stop by the walgreens on the corner of Atlantic Blvd and A1A address is 406 Atlantic Blvd Neptune Beach 32266 ....THANK YOU MISS JESSICA!!!