Amazing update for an amazing day! The day started off right away in his chair, which he can sit in unassisted now, we took a stroll and went to family room where Aiden held the remote and flipped through channels. This may seem so tiny but such a milestone. First to close his hand and grip the remote, then to move a single thumb strong enough to push a button, none of which he could do the week prior (It must be all the thumb wrestling)!
Next triumph in our day was having a shower. The benefits of being at Spaulding really showed themselves, OT brought in a kid size shower chair! Everywhere we have been everything has been huge, made for adults. Commode that Aiden falls into or a huge tub that Aiden has no control in. OT assisted Aiden in getting undressed and from his wheel chair onto the shower chair where he could sit with feet on the ground for stability by himself (although I was ready for the catch at any moment). She then gave us tips to make it more comfortable and enjoyable, such as placing a facecloth over the shower head so it was not so strong. Aiden already was not a shower person so this made a difficult task even more so. He did great and transported back to wheelchair putting on his own shirt then back to bed to finish getting dressed and to snuggle under warm blanket.
A little after getting comfy in bed with a YouTube video he was pleasantly surprised by his grandparents who drove the 7 hours the night before to visit! His eyes lit up in what I thought to be surprise and joy at the same time!
The hellos where short when Speech came to take Aiden to his next appointment (this was at 9am, pretty productive day already!) he transported back to the wheelchair. Everyday he is getting that much stronger at sitting up and then pushing himself with all his might to stand and take that one turning step to sit into the safety of his wheelchair. I stayed and chatted with my dad as Aiden went off with Speech. 45 mins later transport arrived to take us to the proton treatment center so I headed to Speech room. Approaching I expected to hear the usual moaning in pain and frustration and who knows what but it was quite. I entered room to see Aiden beaming with a craft he had made on his lap! Later I chatted with Speech who said he did great, less and less moaning. No more words but she is working with him on feeling comfortable with the routine and hopes once the Ng tube is out he will feel that much better and she will push him harder at speaking.
With so little choices Aiden can make these days asking him which toque he will wear has become our daily routine. Today he chose the orange Almonte one. With a quick transfer he was on stretcher and into ambulance on the way to the the Proton center, quite as a mouse but with smiles. After his treatment he woke up very good too, hardly any crys (the first time coming out from under he cryed/moaned for 2 hours which they say is very common with fossa syndrome). In recovery room the art therapist came in to see if Aiden wanted to do a craft; and he did! This was also a first there is so many things still very difficult for Aiden to do and it is a constant debate wether to even have him try something he use to love doing in fear that he can’t now and then gets upset and sad. He did great art therapy! she had white clay and Aiden picked a color from a pack of sharpies and held the marker in his hand to color on the clay. They would then mush the clay up and it would change the colour. I was shocked and even more so on the fact that he was holding he marker correctly and even better then he ever had befor his surgery!
Heading back to Spaulding, I could tell he was beyond exhausted. Within minutes of getting back into bed he was hocked up to over and feeding tube and vitales were checked. Within minutes of that the Pysio. came in as it was 3 in the afternoon and time for his next appointment. Back into the chair with hardley a whine and off to physiotheraphy. I had an appointment with the doctors about the following days and his surgery for the Gj tube, Broviac (like a iv put stitched in to his chest and also used to administer the Chemo later on ). He came back from pysio an hour later beaming! He had done another craft, a thanksgiving turkey with trace of his hand in different colours for the feathers. After all this he was ready for a nap and back into bed. I went over to visit with my dad and sue while he slept.
When I came back at 6:00 he was still soundly asleep and I debated waking him for a couple hour befor bed. I am glad I did because he got back into his chair and we went for a walk off the floor(another first). I showed him the pool and pictures on the wall of others “finding their strength”. Transitions from a wheel chair to walking again. Back upstairs we stopped my anothe room of a mom I had met and said Hi. Her 3 year old son had sesures from a young age and had just had surgery to remove half his brain to stop the seizures And his brain was rebuilding all the pathways again too. The boys watched The Good Dinosaur while the Mom and I chatted and drank Tea. A little while and I could see Aiden getting uncomfortable in his chair so we headed back to bed last transition for the day. I gave him a kiss on the forehead and told him how incredibly proud I was of him today and within minutes he was fast asleep. I looked at the clock 7:30 he was in his chair for an hour a new record!
I do not know what tomorrow will hold so I wanted to post this amazing update and celebrate