May 10, 2018

First, watch this...

Seriously - this kid knows some pretty awesome people. Thank you, everyone!!!

Card from Great Aunt Kay

Card from NJ Grable's

Capt America from NJ Grable's

May 9, 2018

What I haven't mentioned thus far is that since Will has been in the hospital they just cannot seem to get his blood sugar levels stabilized. Even at Mt. Washington, it continues to be a struggle. His last two days at Hopkins he started going into ketoacidosis (occurs when the body starts breaking down fat at a rate that is much too fast. The liver processes the fat into a fuel called ketones, which causes the blood to become acidic). The original thought was to get him off the insulin pump while in the hospital so it just didn't keep alarming, but the switch to shots doesn't seem to be doing the trick. Adding insult to injury, the hospitals prefer giving the insulin after he eats to prevent low blood sugar. So, if he starts eating when he's already high, he eats so his levels escalate even higher, by the time he finishes eating and the nurse arrives with the insulin, it takes awhile for that to start working. He's had only a few normal readings since this whole process began. 

On a lighter note, today was O's Day at Mt. Washington so Mommy and Will participated in the festivities. He also started on some schoolwork - practicing cursive!

May 8, 2018

I'll let the pictures do the talking today. His first full day at Mt. Washington seemed quite busy! Luckily Daddy took the day off to ensure his first day ran smoothly.

Will with Daddy

Mastering stairs

Wheelchair Fitting for getting around at Mt. Washington

Doggy Therapy

Give that right hand some PT, too!

May 7, 2018

Transfer day!!!!

After thinking he may be transferred Friday...to it definitely being Monday..to it perhaps being Tuesday...to it being confirmed for Monday at 11..to it finally being Monday at 1:30...the time had come. He spent the morning eating his last Johns Hopkins breakfast outside in his spider-man PJ's then had another productive Physical Therapy session where he went to the playroom and jammed out on the keyboard (for some reason he loves playing the Titanic song???). He received some Benadryl today because he has multiple rashes on his chest and tummy from the adhesive used for his heart rate monitoring which were really itching him. Well, that knocked him out cold and Mommy finally had to wake him up so he had time to eat before the transfer. He enjoyed his meatlovers pizza then headed downstairs to wait for the ambulance. Will has been talking about transferring to Mt. Washington since Tuesday so the smile on his face in the picture below is no surprise. Good luck over the next month or so buddy. Always remember ... One. Step. At a time.

One last breakfast outside Johns Hopkins

Look at that face! Stoked to be riding in an ambulance! Let the next phase begin.

May 6, 2018

I headed back to NC early this morning much to William's (and my own) chagrin. We said our goodbye's last night and I promised to see him again once he finishes his stay at Mt. Washington (roughly a month). As mentioned in my earlier post, his brother and sister came to visit him for the first time in the later part of Saturday afternoon. They played in the playroom, went outside to visit the koi fish and played with an interactive kinetic game. All in all, great day for Will and I was so happy to be there for it.

Family!

Playing the kinetic game

As for today, I am again amazed by his progress. He got out and about today, walking down the hospital hallways, playing in the playroom and feeding the koi fish outside some popcorn. I'm going to miss him but I'm so glad I got to be there to see him through this first week. For tomorrow...fingers crossed he gets transferred to Mt. Washington!

Looking at his amazing 10th floor view of Baltimore

One. Step. At a time.

You got this!

May 5, 2018

Today was an amazing day for Will. He slept in and woke up to his day nurse introducing herself as Claire. He immediately saw she was wearing a CGM (Glucose Monitor) on her arm and they talked for at least 10 minutes about diabetes and their various devices. Then Mommy arrived and it was time for Physical Therapy. First up, sitting on the bed for maybe 5 minutes. He has a bit of trouble balancing (continually leaning to the right) but otherwise...success! Next up, standing. Then, marching in place. And finally, walking around the bed. Major success. He was grinning ear to ear while his Mom and Aunt were trying not to break out in tears of pride. We put him in the wheelchair and headed outside to look at the koi pond. When we got back, he got some new temporary leg braces since he had outgrown his other pair. After some lunch, he hit the pillow hard and has been out for about two hours. His brother, sister and Daddy are on their way so he will wake up to yet another set of adventures.

May 4, 2018

Physically, Will is doing amazingly well - his legs kick and bend while lying flat in bed as if nothing happened. After a good morning yesterday, Will woke up from his afternoon nap on an emotional low. I think the brevity of the road ahead hit him and he just wanted to sit up, walk and be in his own home. He also stopped the pain meds yesterday at 11 so some of his down mood could be related to that. But, the good news is that he was able to get off pain meds (still available orally if requested) and got disconnected from all things being sent to him intravenously. We rolled him onto his tummy for a bit yesterday but he was not a fan. He said he could feel "wires" in his back and got really scared. What he was likely feeling was the incision / stitches which are really small, but I'm sure the skin pulling is what he was referring to. Mom took a picture of it so he could see how small it was, but the sensation of discomfort did not settle well with him. His appetite was also a bit decreased yesterday afternoon but he hadn't had a #2 since being admitted on Tuesday.

Mom and I left at 6:30 (I needed a shower and a good night of sleep and Mommy needed to be home for Conner and Tenley) which meant Will had to sleep on his own for the first time. The nurse stayed with him until he finally fell asleep, but he sent us some sad text messages telling us how much he missed us before finally dozing off. Heartbreaking. On a more positive note, he did finally have a #2 after we left...the nurse said it was quite hefty :)

He woke up this morning in a good mood; afterall, today was the day he could finally sit up in bed and even try standing. This had been Will's motivation since Tuesday and the day had finally come. Mom made it to the hospital at 9:30 and was greeted to an upright in-bed Will. He then sat on his bed for about 20 minutes until he got tired and wanted to lay back down. Progress though....just what Will needed to reignite his motivation.