May 12, 2018

Below is a video taken last night, marking ten days post-surgery. This is truly remarkable.

May 11, 2018

Will told me today, via text, that he had a good Physical Therapy session but no schoolwork. That's all I got out him before I can only assume his iPad time ended :)

And just when I think the boy had enough cards and presents sent his way, he had yet another delivery today. Thank you to Ella and Avery, Great Aunt Ann, The Cavalry Church, Aunt Carol, Cousin Beth and MedOne Pharmacy. Wow.

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!