Tuesday

Tuesday was a pretty good day. Jack was somewhat sore today and he developed a rash. The Dermatologist hooked Jack up with some super cool creams and he's already on the mend. One funny thing, the dermatologist had a sunburn; shouldn't he know better? Anyway, Jack's doing some really amazing things with his right hand. In fact, I'm not sure he knew his right hand could do all those cool things until today. It's so much fun to watch!!

We're settling into hospital life. In fact we even did some socializing tonight at the 3rd floor "Wheel of Fortune" game. Jack asked where Vanna was and the 75yr old lady running the game said she'd have to do. Jack thought about that for a few seconds and then said "okay."

Jack's classroom sent lots of cards for him today. He enjoyed them so much, we decided to decorate the room with them. Thank you 2nd grade friends!

Once again thanks for all your thoughts and prayers. Our family is truly blessed!

Monday has been a good day! Jack had his therapies, worked hard with barely a complaint. He did a lot of sitting and even some standing w/support. It is great to see him work hard and have his sense of humor back. We have many more therapies in the coming days and we are confident he'll do well.

Dominic came back today (Thank You Jacquie!!), we certainly missed him. He now has many new memories and stories of his time spent in Milwaukee. He had a great time!

Didn't manage to get a new photo today, we'll try again tomorrow.

Thanks for your comments, thoughts and prayers! We appreciate it!

Good night for now.

What a Difference a Day Makes

Hi All - I was unable to post on Saturday due to the fact Jack had a very rough day. At one point the Pediatric Emergency Team was called in. I'll spare you the details because it involves a lot of bodily fluids and projectile. It was somewhat scary but with immediate care and a good course of treatment Jack was back to himself by 9pm that evening. In fact he got himself into a bit of trouble @ 2am that evening. He was raising his bed up and down and turning on lights. It was kind of cute until about 2:30am, then the nurse and I had to cut the power to his bed.

On Sunday morning he was a new boy and full of energy. He had OT ,PT and could tolerate sitting up for long periods of time. Tomorrow he'll try and stand.

He also had a some visitors over the weekend. Thank you Audra for the treats! His friends Marita and Bailey read to him while he was sick on Saturday and his Uncle Dan provided entertainment on Sunday. (See pictures below)



Good Night from Room #34!

Rehab

Hi All - Jack has graduated to the Rehab unit. It took some doing after a rough Thursday night but he's now on the Rehab floor. Here's a bit of advice, if a doctor wants to give your child an IV of caffine at 10pm, say NO!

He had some visitors today. His Aunt Jacquie and cousin Katie came from Milwaukee and boy did they luck out because 3rd floor was having a Ice Cream Social.

Aunt Jacquie and Katie have bravely volunteered to entertain Dominic for 3 days. Dominic is heading back to his "roots" this weekend. WISCONSIN

I'm sure the Wisconsin counsins will be tired come Monday.

Tomorrow Jack starts his therapies and I'm sure it will be tough because he's pretty sore. It will be a very slow process but we're hopeful he'll be up and walking (with his walker) in a couple of weeks. I have to cut this short tonight because I on running on no sleep. I need an IV of caffinee!!!!!!!!!!!!!!!!!!

Thank you for all your great emails and words of encouragment! I'm passing them all on to Jack.

Underwear Model

Well, Jack's hopes of being an underwear model have been dashed. With his new scar on the tummy, and inability to acquire the "six pack", the model scouts will not be knocking on his door.
However, we are very hopeful and looking forward to him becoming more mobile as a result of this, and that is far more important.

This day finds Jack peeing in a bottle and that bodes well for car rides with a "little Johnny". He is progressing and becoming more aware, even asking to go home. Tomorrow we'll move him to a Rehab room and begin some therapies.

Nic is handling this pretty well, he is certainly enjoying bossing his Grampa around for a few days.

Later.....Curt & Heather

Surgery

Hello Everyone - I'm happy to report that Jack's surgery went well! We started our day at 4:50am and drove to Rochester where Jack was scheduled to be the first surgery of the day. Unfortunately, that was not communicated to the Medtronic Rep (the pump representative) who apparently has to be in the room while the pump is being put in place. The pump rep showed up 3 hours later and by then Jack was demanding his surgery! He was however a trooper and his Grandpa read him about a 100 Dr. Suess stories during our 3 hour wait. Jack also laughed out loud when anyone said the word "intrathecal."

Anyway things went well and he'll be snoozing most of the day. They're giving him the good stuff because he will have quit a bit of pain. I can only guess how weird it must feel to go to sleep and then wake up with a foreign object in your body. Yikes! The doctor tells us it will soon just be a part of him and he won't even notice it after awhile. We really hope that's the case.

Tomorrow we'll move to the Rehab unit where we'll set up camp for 7 days. They will be monitoring Jack's tone and adjusting the pump's dose. He will have 3 hrs of therapy a day. Jack already knows most of the therapists there from previous surgeries and they are very excited to get their hands on him.

I'll try to keep you all updated on his recovery!! Thank you for all your thoughts and prayers!

Curt & Heather

Jack's Big Day!

Hi All - This is my attempt at keeping everyone informed when Jack goes in for his Baclofen pump. His surgery is scheduled for March 25 at St Mary's in Rochester. He'll be in the hospital for 8 days. Ugh!! I don't think Jack's to concerned with the length in stay because the hospital has cable and that's all a man really needs! Right??

If you're wondering what a Baclofen pump is, it's a programmable pump (looks like a hockey puck) that is surgically placed and connected to a catheter in the body. In Jack's case the catheter will be connected to his spinal cord and the medication will be delivered in controlled doses to lower part of his body. The Baclofen will help reduce the spasticity in Jack's legs. We're hoping this will allow him to grow without his muscles always tightening and pulling his bones out of place.

I'll try and keep you updated throught the surgery and therapy. Wish him luck!!