Treat, Treat...

I can't say Jack thoroughly enjoyed his Trick or Treat experience tonight but he was cute none the less. It was warmer tonight so I thought we would sit outside and hand out candy...Well Jack didn't like this idea. He kept pointing to our car saying "go, go, go" and barely looked at the first few trick or treaters. He apparently thought there was more to this Halloween thing than sitting outside. So in we went and Jack started peeking through the screen door at all the kids. He tried to help put candy in the bags but got a little too excited and with his mighty pitching arm threw some candy in the grass! LOL! It only took about a half an hour until we were out of candy. We practiced all week saying "Trick or Treat" but Jack could only come up with "Treat, treat!" that's right Jack -- don't even give someone the chance, demand your treats! LOL!

OOPS!!

Little did we know that Trick or Treating is MONDAY -- not tonight!! So there Jack and I sat all ready for the kids with Jack in his costume and candy at arm's reach! HA HA HA! Oh well, it was like a dress rehersal I guess!

I added two new photo albums to the photo section. I also numbered them so they are easier to navigate. Please let me know if you have any problems accessing the photos or anything else!

Good night everyone!

Trick or Treat!

Jack and I are all ready for the trick or treaters this year! We have our bucket of candy and Jack's all ready in his puppy dog costume! I figured this year he'd have more fun anwering the door and staying warm rather than heading out to get candy...the mall is having trick or treating tomorrow and I hope to take him there so he (and MOMMY) can get some treats!

Jack isn't feeling well -- he has a bit of the sniffles. He didn't sleep at all last night! Poor guy. He's only running a slight fever so hopefully it will just be a few days of a runny nose. We canceled speech therapy this morning because neither one of us were in any shape to be up and out so early. We did go for his new braces casting because we really need them to be made as soon as possible. Jack was a little miserable but it went fast and we should have them in about two weeks. The orthotist was able to modify Jack's current braces by heating them and bending the plastic a little so they aren't so tight on his feet. I am relieved that this should work until we get the new ones. Jack chose green and blue dinos for his straps -- although he was eyeing up the trucks again as well. Dinos it is!

Well, must run so we can be ready for the little ghosts and gobblins!

Feeding Team and New Braces

Jack had his appointment with the feeding team this morning. We've gotten to know the group of therapists very well and they are all very nice to work with. It's been a struggle for Jack to gain weight but we have run out of calorie boosting ideas! They basically suggested the same things -- adding duocal to every meal, adding butter, and other high calorie toppings to everything, keep up with the pediasure and to try Jack on a new Boost product that's juice based and less filling.

Okay to give you an example of Jack's meals -- here is what I wrote down for what Jack had to eat on Monday:

7:30 am
¼ cup apple oatmeal (made with Pediasure)
2 strips “veggie” bacon
1 piece Pepperidge Farm French Toast w/butter

1:30 pm
1/2 chicken croquette
Several teaspoons mashed potatoes with chicken gravy

4:00 pm
1 piece of raisin bread

6:30 pm
Philly cheese steak (meat, cheese, peppers – no bun)
About 6 french fries

8:00 pm
½ Banana

Drinks:
3 – 8 oz servings Pediasure
8 oz of juice/water/Miralax

Seems like enough food for anyone to get fat on! I hope the little man decides to put on the pounds soon!! I am not worried though because he IS healthy and strong. So he'll just be tall and thin :)

Jack gets casted for a new pair of DAFOs this week. They are going to be hinged at the ankle to allow him to move his ankle a little more freely. It seems almost overnight Jack totally outgrew his first pair! One day they fit and the next day it was like trying to put an elephant's foot into a mouse's shoe! They will take about two weeks to be made -- until then he'll almost have to do without wearing them.

Tomorrow morning Jack has PT -- I am sure she'll be impressed (and amused) by Jack's new rolling abilities. Oh, and last night Daddy took the back off of the computer chair so Jack can actually see where he's going when he's rolling around! Now it's just up to me to remember this fact and not fall off our newly designed computer chair! Ha ha!

Roller Jack

Hello everyone!

It certainly is getting to be cooler these days, isn't it? Jack loves to go for walks -- over the weekend we went to the park and Jack did the sliding board, the merry go round, the swings (of course) and the big climber (that looks like a spider)! It was perfect weather for fun outdoors. He's learning all about leaves and how fun they are to crunch in your hands and throw! We got a puppy dog costume for him so he can hand out candy this year!

We've had a few really busy weeks and it looks like its going to be even more of the same coming up...I am trying to manage our schedule so we get some free time but wow these weeks are just SAILING by!

Jack recently had a neurology appointment -- his neurologist is the BEST! He was glad Jack hasn't had any seizures and for now we're keeping his current dose of Tegretol. He was glad to hear all of Jack's new accomplishments! We had been on a waiting list at HMC for Botox but learned the doctor is leaving so for right now they aren't doing Botox injections. The neuro offered to personally contact his collegue at CHOP so Jack can get in as soon as possible!! I am glad because the sooner we help Jack with some of his tightness the sooner he can get better with his walker!

Jack's therapies are going well -- we do speech and physical therapy once a week, occupational therapy every other week and vision therapy once a month. We still regularly see an orthopaedic surgeon, a neurologist, a neurosurgeon, a developmental dr., his pediatrician, an eye doctor, the feeding team, orthotics, and hand spint therapists! Plus others I may be forgetting at the moment!

Jack is such a chatter box these days. We can get him to repeat so many different words...cup, up, ball, bubble, cat, go, bye, hat, door, ma ma, da da, puppy, diaper, ba ba, medicine, all done, uh oh, no no, light, and many more! Even though he can repeat so many words we are having a hard time getting him to USE the words...he knows what they mean, he can pick out pictures, go get the item but needs us to say the word first...then he'll repeat it. His speech therapist says this is common with kids who have CP. She is pretty sure he's got some form of Apraxia and we're working hard in therapy with him.

Physically Jack is ALL OVER THE PLACE! He uses anything and everything to get around. He mostly scoots on his bottom using his hand. At HMC last week Jack "took off" scooting down the hall and into a completley different waiting area. I was close behind but he wasn't looking back. Dr's were stepping over him and smiling at how determined he was! Jack makes friends anywhere we go -- it's possibly my favorite quality about him. He especially loves other children and will do well in preschool I am sure! Oh, yes, Jack will be starting preschool in March! I am not sure of the details yet -- we have a transition meeting set up on November 12th.

Jack decided the other day to use the computer chair to walk around the house! It was so cool -- I caught him walking across the dining room and just froze! I had tears in my eyes. Watching my "baby" using his two little legs to get across the room was amazing!!

Well, I should wrap this up for now. I am sure there's so much I left out -- but hey if I think of it I will update later.

Have a great afternoon!

Welcome to Jack's Blog

Welcome to our new home! I've decided to change to a "Blog" style. Blog is short for Web Log...basically it serves as a place to share information and comments in a journal style web page. I am still new at this so check back often for new posts, links, pictures and of course updates on Jack!

Please, feel free to e-mail me with any questions. I will be posting an update on Jack soon!