Surgery Went VERY Well!

Jack's eye muscle surgery went very well! He's doing great!

We arrived at the hospital around 8:00 am on Wednesday morning. The check in process was smooth and Jack got a little hospital bracelet. We went up to the second floor south operating room waiting area and, well, waited. We got called back to a small area around 11:00 am where they checked his vitals and asked us his medical history. We spoke to the ansesthesiologist and the doctor. Jack was such a good boy all morning. He waited patiently and didn't fuss at all when they started examining him. We dressed him in the sleepy tiger hospital gown and then he decided to take a short nap while we waited for his turn in the OR.

They decided to premedicate him with Versed -- which I am assuming is like a "nerve pill" to help with keeping him calm. He had just woken up from his nap and I gave him the meds. It didn't take long for the loopy look to set in! They were ready to wheel him back to the OR and we got to walk with the gernie to the doors. It was very sad leaving Jack!

The operation took just about an hour and a half. Grandam Linda stopped by to keep us company in the waiting room. Daddy and I walked to the lobby for some Starbucks and got a bite to eat as well. Jason went back with Jack first. They only let one parent back at a time and I happened to be out of the room when they came to get us! About 40 minutes later they were moved to a secondary recovery area and we were both allowed to stay back there. Jack looked so small and tired when I saw him. I held him on a rocking chair and asked him to give me 5 -- and he did! He took a few sips of juice and woke up little by little. The nurse removed the IV, and we dressed Jack in his own clothes. We were given discharge instructions and an antiobiotic ointment for his eyes.

When we got home we gave him a small snack of applesauce and saltine crackers. Basically we all climbed into our bed and didn't leave for the rest of the night! Jack seemed comfortable and not in any pain. We all fell asleep pretty early!

Jack's eyes look really red. When he looks to the side you can see where the incision was made. It's kind of yucky looking, but it doesn't seem to bother him.

Well, he's stirring now -- and I must run! Sorry to cut it short!

Surgery tomorrow!

On Friday Grandma Linda met Jack and I at the UCP to see the eye doctor. They gave Jack an exam and said everything looks good for surgery. Jack was a real trooper and kept us smiling and laughing as he made friends in the waiting area. Thank goodness for Grandma Linda! It made the appointment so much easier. We then went over to the main hospital to the pre-admissions area. We met with a nurse practitioner who took Jack's vitals and brief (ha, ha) medical history. Then we met with the anesthesiologist -- very nice man! He explained the general procedure for anesthesia and feels Jack will do just fine and does not consider him high risk.

A very good side note -- Jack gained 1 lb 3 oz since going on resource!!!!! He's now weighing in at (drum roll please....)

27 lbs, 3 oz!!!!!!!

That was so unexpected!!!!

Oh, and he's 38 inches tall too!!

Anyway Jack will miss the first two weeks of school. I am a little bummed about that, but I know it's to prevent infection. His teacher called on Monday to wish Jack the best for his surgery. She's such a nice lady.

Tomorrow we need to be at the main hospital at 8:20 am. His surgery is scheduled for 9:50 am. Jack is not allowed anything to eat past midnight tonight. He's allowed only 8 oz of clear fluids up until 3 hours before our arrival time. So I am not sure if Jack will end up getting anything, because although he's an early riser that would mean he'd have to wake up and drink something before 5:20 am!

I will keep everyone posted as soon as I can.

Happy Birthday Mommy!

I Swear I Feed the Kid!

LOL! Here's a follow-up to Jack's latest trick...

Knoebel's Grove...

We went to Knoebel's Grove on Saturday with Grandma Linda and Brian. What a fabulous day (even though it did rain on us for a bit). It's the perfect place for a family day! Jack's favorite ride was the Choo Choo Train! I think that's possibly the biggest Jack Riley smile I've ever seen!

We're getting ready for Jack's surgery next week. I am anxious to get it over with! We have our pre-op appointments on Friday. We'll be at HMC all day setting up the surgery.

You can see more pictures from Knoebel's in the

AUGUST ALBUM

I can't believe it's almost September! The summer has gone so quickly. Jack goes back to school soon (and yes I am looking forward to it!!!) I think Jack is excited too. I am sure there will be several new friends to meet.

My buddy Jack

Things have been pretty quiet around here...

Jack is doing well. He's so bright and funny and keeps me on my toes. His newest thing is washing his hands...he cannot get enough! I guess that's what we get for being so germ conscious all those months! He'll even try to trick me into getting his hands washed. He knows after each meal it's time to wash hands. So he'll take a bite, and exlaim "ALL DONE" and point to the sink. Ooooh no, Jack -- mommy's onto you!

He's talking quite a bit. His words aren't perfect, but if you spend enough time with him -- you'll get the point! Some of his new phrases are "GET IT" - "GET BALL" - "ALL DONE" - "NO" - "UP HERE" - "MAMA HELP" - "GO BYE BYE" - along with about 75 other words...he's come so far. I am so proud of him. He likes to repeat and label things right now. If we're in the grocery store and we pick out bananas he'll let me know...he'll shout "NA NA!!!!!" so everyone ELSE knows we're getting bananas too!

Another shopping note: You know those people that sell balls in stores know what they're doing too. Jack's favorite toy is a ball. So those HUGE wire bins that hold balls are simply torture to parents whose children love balls. You can't miss it...you can't turn back...you HAVE to push your cart PAST the ball rack. Sooo poor Jack. "BALL??" "BALL!!!!!" "Yes, Jack -- very good. Those ARE balls." Insert sad little Jack face here. "BAAAAALLL????" "Oh, look, yes. Look at all those balls." We're almost past...and Jack's turned all the way around in the cart. "Ball." "Yes. When we get home we'll play ball." I may be asking for trouble by saying this -- probably jinxing myself...but Jack does not throw tantrums. He's very easy going...he's my BEST buddy. He goes everywhere with me. Even a trip to Wal-Mart is fun! He loves people and won't think anything of tapping someone on the back if they're close enough. He communicates so much with his little face and personality. He charms everyone he meets...this will be good for Jack, but may get him in trouble too!

He's working so hard in therapy right now. He knows he works hard. His occupational therapist is amazing with him! I wish all of you could join one of our sessions. Jack will now willingly use his right hand for things. You can ask him "Give me 5" and he'll offer you a slap on the hand with his left automatically. Then if you point to his right hand and ask, he'll try soooo hard and will give you 5 with that one too! He's learning to pick things up and release with his right hand. I can see how hard it is...I never thought we'd get as far as we are with him using that hand. It's like I get to see small miracles over and over. Every parent should be so lucky!

During physical therapy he's working hard on weight shifting...he tends to not like to have all of his weight on one foot -- so we're doing a lot of activities that require this. Like kicking a ball...stepping on soft rubber stepping stones and putting one foot up on a step. Our PT is also working with Jack and standing independently. Right now he's getting very good at standing with his back against the wall. He's made so much progress in the past few months! We are getting a new walker called the crocodile. You can check it out here: CROCODILE REVERSE WALKER

Jack's surgery is coming up very soon. I am nervous. Just because he's my little boy and I hate to see him go through anything like this. I know he'll be fine. We have several appointments coming up -- our schedule is packed at the end of this month.

He also goes back to school Aug. 28th. We got a little newsletter in the mail. I am sure there will be many new friends for Jack to meet when he goes back. There's an open house and preschool art show at the end of September. I can't wait to see Jack's work on display! I'll be sure to take a lot of pictures.

Well, time to get Jack in the bath tub! Have a great day!

Oh, and anyone on myspace? Wanna be my friend? Feel free to add me!

http://www.myspace.com/angamc

As Time Goes By...

I went to a party on Saturday night. It was a housewarming party for one of my very best friends in the world! Her new house is gorgeous -- I got to see my core group of best friends from high school. We got to reminisce and laugh. The BEST part about them is the laughter. I laugh till I cry -- then laugh some more. This week I've been left with a very sad feeling. I can't believe we're all grown up with jobs, houses, cars, kids. It seems like just yesterday we were getting ready to go to high school, getting ready to graduate...heading off to college...where have the years gone??

It doesn't help that I am one year closer to leaving my 20's. I turn 29 on August 26th. I don't feel that grown up!

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Thanks ladies! I am very happy with where I am, but surprised that so much time has passed.

I am lucky because I do have wonderful friends with whom I am still close. We're just a little older and more seasoned now!

Nancy, you are RIGHT -- I, in no way shape or form would want to be 17 again. Well, maybe I'd take the ability to show off a bikini...LMAO!
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A little redecorating!

I'll let the pictures tell the story!

We’re getting wheels...

Yesterday Grandma Josie and I took Jack to CHOP for an evaluation at the seating clinic. I went with a list of items I wanted to request for Jack. I wanted to request a special needs carseat because although he’ll be tall enough for a booster seat soon, he doesn’t weigh NEARLY enough to sit safely in one. I also wanted an activity/eating seat, and a special needs stroller (a bigger version of an umbrella stroller). He’s simply outgrowing all of the toddler items he uses!

I was a little nervous about driving, since Jason usually drives when we go to CHOP. Grandma Josie arrived bright and early at our house and we left for Philadelphia right at 8:00 am. Our appointment was at 10:00 am, but we hit some yucky traffic and ended up being a half hour late. I called from the car to explain and they we’re very understanding. Jack was such a good boy in the car — he was tickled that Grandma Josie with in the car and then he napped until we got there!

We met with Alan, a physical therapist with the CP Clinic, and Mike a vendor of special needs and medical equipment. They were great! They played with Jack and asked a lot of questions about how Jack gets around and noted how he really wants to be independent. They watched him walk with two hands held (we didn’t have his walker) and they were glad to see him so motivated to walk! We talked about insurance coverage and the rules about what they will pay for and how often they’ll pay for that item. Alan, the PT suggested instead of a stroller, we should see how Jack does in a manual wheelchair. You know at first my heart sank. I really didn’t think we were at the point in Jack’s life that we’d be making this decision. I agreed with everything the PT had to say. Using a wheelchair will NOT be confining for Jack. It will be liberating and he’ll be able to get away without mom’s help!!! Which is exactly what I want!!! I want him to “run” away while we’re in Wal-Mart...I want to have to chase after him! And he wants it too. So in situations where he isn’t able to crawl or use his walker, he’ll use the wheelchair. It’s basically taking place of the stroller — and giving Jack the freedom to move on his own. That’s something a stroller would not provide. While it’s still hard to accept, I know in my heart this is actually a GOOD thing.

We later moved to a room with tons of equipment! They tried Jack in the Britax Carseat which looks soooo comfy and will work with a child up to 105 lbs!




We also got a seat which works like a booster seat, desk, activity chair, etc. It’s nice and comfy and should work for Jack for many years. It basically just provides proper positioning for the best use of both hands, proper alignment of his back and trunk so he’ll be able to concentrate more on things like coloring and puzzles. It’s sort of like his booster seat he uses now, but much bigger.




Then we tried the cutest little wheelchair I’ve ever seen. Jack looked so good in it. It really looks like it was built for him! He didn’t know what to think at first...but when we showed him how to push on the wheel he giggled and moved back and forth a bit. Here is a picture similar to the chair Jack is getting. He sits up nice and tall and really, really looks great in it.




It’s going to take some time for Jack to learn to use his right hand to push the chair and we’re getting what looks like small pegs on the right wheel so he can push with a closed hand. It’ll take practice, but I am sure once Jack gets it, there will be no stopping him!

Okay, some common misconceptions about wheelchairs that I would like to clear up now. This is NOT “giving up.” Jack will still walk as much as he is now. This will only give him MORE independence. He WILL walk — EVERYONE is confident of this fact. He won’t lose any abilities by using a wheelchair. Many, many people with CP use a variety of equipment in daily life. Some walk at home with no equipment, but choose to use their wheelchairs for long distances and use a walker for shorter distances. Some kids with CP choose to use their wheelchairs at amusement parks or other places where tons of walking takes place. Even though it’s difficult to accept such a strong symbol of being disabled, I know this is what’s right for Jack.

The wheelchair is very small so our house will accommodate it nicely! We don’t have many steps going into the house, so we’ll just need a small ramp probably at the back door since that’s the door we use 99% of the time. Jack’s no where near potty training yet, but when the time comes there will be some bathroom modifications needed...and by that time he’ll probably get to the potty by walking.

Please feel free to ask any questions! I asked a lot at the clinic and they were so helpful in helping us understand how everything works. The equipment should be here in about three months. Insurance only pays for a wheelchair every three years. So another reason we didn’t go with the stroller is that’s also considered a wheelchair and then we’d be stuck with it until Jack is 6! This chair has room for growth so it should be exactly what Jack needs for the next few years.