May 28, 2018

When a boy gets to see his dog

Always good to see Sis

Pulse treatment

 

Scar from surgery

May 26, 2018

The Dawgs ice hockey team just sent Will a giant care package full of Max Domi (Type I diabetes NHL Arizona Coyotes Hockey player) and Orioles gear along with a cool car coloring book (I watched him color in the Honda Odyssey and read every single vehicle listed in the book...pretty sure he liked it!) The signed Domi gear...well, Will may hate me for posting this publicly later in his life, but for now, how could I resist.

Celebratory dance for all the garb

First up to color - Honda Odyssey

Puzzle Time - Thanks Mama and Papa Petranka

May 23, 2018

Will is coming along amazingly well in his Occupational and Physical Therapy sessions at Mt. Washington. He's not sleeping so well at night and extremely busy during the day so he doesn't get a chance to nap either. The visitors, cards and gifts have been overwhelming...thank you EVERYONE for making his hospital stay more bearable. He's definitely ready to be home but he still continues to work hard.

So many photos / videos to choose from during the past week. I'll start with a video:

And now I'll add a few photos from today and his first time seeing Flurry since he left for surgery on 5/1 (it was quite an emotional reunion for Will - he was so happy to see Flurry, he broke-down in tears of joy).

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!

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!

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.

May 3, 2018

Will did great overnight. He got woken up at least every two hours by the nurse for some medication or to change the way he was laying or to check his blood sugar. The fun wake up calls were the ones where the very loud alarms had me jumping out of the chair  each and every time. We were finally woken for the day at 6:30 by his surgical team who were VERY impressed with his progress. Some patients cant even move their legs yet and Will is just fluttering and bending his legs like it 'aint no thang. Then he saw his neurosurgeon, ate breakfast, had Physical Therapy and met with the Pain Control Team (who were most proud of the fact he hasn't once complained of pain). After all that, he was pooped. He's now snoring soundly getting some much needed rest after the busy morning.

I attended the daily huddle outside of Will's room since he was sleeping. Most of it was just summarizing his progress thus far but I did find out his transfer to Mt. Washington will not be happening until Monday, not Friday. While this is slightly disappointing, Mt. Washington doesn't have a bed for him until then, so it is what it is, I suppose. The Doctor did refer to Will's demeanor as "charming" twice throughout the huddle. So true - what a perceptive Doctor!

May 2, 2018 - PM

7:30 pm: He was slightly awake when we arrived at 11:30 (Mommy and I got lost in the parking garage) but there were so many doctors and nurses in his room that he zonked out as soon as the room got quiet again. He has numerous teams including Physical Therapy, Neurology, Endocrinology and Surgical (I'm sure I'm missing at least one). He was able to eat some breakfast prior to zonking out again - his first meal since Monday night!

At around 3:00 he was transferred to a step-down room...great progress! He now resides on the 10th floor with an amazing view of Baltimore. After the transfer he ate some dinner, topped off with some valium as a dessert. He's out again but Aunt Ray Ray is going to stay the night with him so Mommy can go back to Conner and Tenley (Daddy is at a conference in Ocean City for work). Will is a trooper and has such an amazing fighting spirit. Keep it up, buddy!

Note: not only is this is a view of Baltimore from Will's room but it's also a picture of the flowers from Scott Grable and family. Ford Mustang flowers - how perfect!

May 2, 2018 - AM

10:30 am: Will woke up around 9 last night and was not in the best of moods; although, he's highly medicated so some of his emotions could be due to that. Bill spent the night with him - Will slept, but Daddy did not (again, lots of beeping!). Will hasn't eaten since Monday night but is getting IV fluids. His Mom and I are headed to the hospital for the day soon and will be bringing him his favorite snacks (pepperoni and seaweed chips) and other personal items. Hopefully this helps lighten his spirits a bit. He will be either laying on his back or side for at least the next few days, but otherwise unable to move and sleeping the majority of the time. I'll post again tonight once we return from the hospital.

Will: Day of Surgery

Will's  surgery was scheduled for 7:30am. Unfortunately, his Aunt ignores things that beep and didn't know his insulin pump was low on insulin. That delayed surgery for about an hour but he remained in good spirits. At 8:30 they took him back to start the operation. Around 12:30, he was all done and has been sleeping soundly since.

Johns Hopkins Hospital

6:00 am - Mclaren car from Aunt Ray Ray and Purple J in one hand and a puppy from his friend Mia in another. Of course, the super powers of Captain America and Iron Man on the jammies!

Reading one of his class letters "Open when you are nervous"

7:30 am

Calm and focused prior to 8:30 surgery

Will: Pre-Rhizotomy Surgery

Two videos capturing Will both walking and running prior to his Rhizotomy surgery on 5/1/2018.