Sunday, May 13, 2018

May 13, 2018

All - I have to take a bit of respite from all things electronic and reality-based. Purple J and I will be off to Costa Rica early in the morning without any laptops...only cell phones for emergencies. I'll be back on the 22nd or 23rd with a post. In the meantime, enjoy these recent family pics. I can't wait to see the progress upon our return! Keep it up, Will!





Saturday, May 12, 2018

May 12, 2018

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


Friday, May 11, 2018

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.



Thursday, May 10, 2018

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

Wednesday, May 9, 2018

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!





Tuesday, May 8, 2018

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!

Monday, May 7, 2018

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.