Happy Halloween!!

Create Your Own!

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Oh wow, we're back after a lot of technical difficulty! I switched to the blogger/google/beta and was quite lost for a bit. I believe everything should look and run smoothly now.

I have so much to tell you! Pictures will have to wait because I am on daddy's work laptop at the moment (shhhh!!) because our mac is having power issues (it won't turn on) and we have yet to get it looked at.

Anyway, things have been very busy of course -- Jack's been well, no seizures, and up until recently very healthy! He has a cold now but should hopefully be at the tail end of it. He's at school today and he was acting fine, no fever just some left over sniffles...

We went to visit Kris, Mike and their daughter Alicia in the Poconos two weeks ago while daddy was in LA on business. Alicia has cerebral palsy too. Kris and I have been friends for almost 4 years now and it's been amazing to watch our kids grow up and accomplish so much! We spend a lot of time chatting on the phone and running our online support group so we're always in touch, but there's something about actually kicking back and hanging out together that's SO MUCH FUN!! The kids had a blast too. They played and played and played...Jack got to meet Alicia's occupational therapist, and they loved playing with Mike in the Dora tent. Jack's Christmas list grew every time he would play with one of Alicia's toys! lol! We had a wonderful time and hope they will come stay with us soon!

Jack had an MRI under general anesthesia on Friday. He did so well. This is just routine and will give a better picture than his CT scan on file so we can get a look and discuss things with his neurologist. Most kids with neurological conditions should have an MRI within the first few years...we have our meeting with the neuro on Nov. 17th.

I am a little ticked at the seating clinic! We had our appointment the first week of August with the hopes that everything would be approved and ordered and ready 3 months later, which would be the first week of November. Well...they JUST GOT the letters of medical necessity on Friday....which means the last three months have been a total waste of time!!!!!!!!!!! If I knew who dropped the ball I'd go kick them REALLY, REALLY hard right now. I am so mad with myself for not following up sooner. I am going to call every Monday until we get the equipment. The woman I spoke to was very nice -- I didn't take out my frustrations on her. She explained the process and once they have the letters and get approval from insurance her job won't take but a week or two (purchasing and delivery). I do understand the wait...but my child NEEDS this equipment and because someone didn't get the letters out in a timely fashion it's going to take even longer.......... but there's nothing I can do.

I have been concerned about the special needs carseat for some time...I just wasn't sure it was going to fit in our minivan (the seats are small). Anyway, I still think Jack would benefit from it but I found something that I feel is a much better fit for Jack.When I learned that the seat hadn't been ordered yet, I immediately placed an order for this seat from Graco:

Graco CarGo Booster Seat

It goes from 20 to 100 lbs and has what I feel is just the right amount of support. So sometimes things happen for a reason. I also wanted to share this seat for those who have smaller cars and can't fit the bigger SN carseats. So now I must call the vendor and cancel the seat. I'll keep you posted!

Grandma Josie had to have surgery last week -- she's home now and on the mend. We are going to go over to her house and hand out candy. We'll probably do some trick or treating as well around her neighborhood. I will post a picture of Jack in his costume tomorrow, or later this evening if I get a moment.

Jack's sleeping has been ROTTEN for about a week now. He's going to bed with little fuss (which is a bonus for sure because that's usually not the case) -- but he's waking up very upset around 2 am every morning. He won't go back to sleep and wants to play after I get him settled down. I've tried shortening his nap which I would take away compleltey but he will fall over and go to sleep at school when I do that!! Anway, just a little vent on how little sleep we're getting. He does this from time to time and it hasn't helped that he's had a cold either. Pleas keep your fingers crossed for more sound sleep in our future.

Have a safe Trick or Treat tonight everyone!!!!!!!!!

Another busy day!

Jack had his 6 week post op appointment with his eye doctor this morning. While we were in the waiting room a fire alarm went off and we all had to evacuate. It's at the Outpatient Center so there were a lot of offices that had to evacuate -- it was a FALSE alarm, a child had pulled the alarm handle!! -- we went back in and were taken back to be seen.

Jack's eyes look nice and straight with the occasional turning out of his right eye. It's very brief. The eye doctor said Jack's RX in his glasses may be too strong now that his eyes aren't turning in any more. He thought for a while and decided Jack should go without glasses for 6 weeks. He said this should even out the eye that's turning out. I think Jack will be upset! He asks me for his glasses every time he's without them!! I am not sure if he'll need them in the future. I assume so because I think they helped with his farsightedness. Does anyone know if farsightedness can get better? I am nearsighted so I am not familiar with the opposite. I know my vision got better to the point of no glasses around 16...then slowly they got worse again and when I went to college I needed them again and still wear them now. Anyway, just curious.

After the eye doctor we went over to the Feeding Clinic and met with the dietitian. She is new to HMC and very informative and nice. She weighed and measured Jack -- 29 lbs, and 38 in. HE'S NOW 25% FOR WEIGHT, HEIGHT AND W/H RATIO!!!!!!!! In June he was less than 1%!!!!!!!! for weight and about 15% for height!!! I could not believe my ears!!!!! She did refer us to a GI doctor for Jack's ongoing constipation issues (since birth basically) and I don't think it will hurt to have one on the team anyway. I told her the only thing we've done differently was add the one 8 oz serving of Resource 1.5 JFK. I explained again the supplier problems and she is going to hunt one down for us. She really seemed serious too! I hope this gets resolved finally!

On a sad note, Jack's pediatrician has retired very suddenly effective immediately due to an illness. We are very shocked and sad. Her office is still open and taking calls and they said they are going to be working with her patients to find a new doctor. I wish her the best. She saved Jack's life when he was born (she was the ped on call and got him breathing and administered CPR). I am going to make some calls to other local peds to see if they accept our insurance and are a good fit for us.

Our CP Clinic Visit at CHOP

What a long day!

We left at 11:30 am and got to CHOP at 1:30. It was an easy drive with zero traffic. We checked in and Jack made a few new friends in the waiting area. He's so friendly -- and the other kids were so cute!

We met with the occupational therapist first. She had him show off some of his fine motor skills and Jack took to her right away. He was practically ready to go home with her! They tested his ability to handle small objects, draw, use scissors and she measured the range of motion in his right hand and arm. She suggested we have a new brace made that will hold his hand open a little more aggresively than our current Joe cool splint and our night splint (which he hasn't been wearing too much lately because it's too easy for him to take it off).

Our next visitor was a resident doctor of physical medicine. He came in and measured Jack's range of motion in his legs, and tested all of his refelxes. Jack liked him too -- although I think it's because he let Jack play with his stethoscope! Then Dr. Drake came in to see Jack. He suggested we do another round of Botox injections in both legs and his right hand. After the injections he will evaluate Jack for a new pair of DAFO braces for his legs. He felt we can get a few more weeks out of our current pair -- which I am hoping is true because it doesn't look like Jack has much more room to grow!

We then met with the physical therapist. He's very easy to talk to. We discussed different ways to "sneak" in some extra stretching. He said we should keep doing what we're doing!

We then went for hip xrays -- which I assume are okay, because we haven't heard anything to the contrary. His hips felt fine on examination -- the xray is just to be absolutely sure.

CHOP tomorrow!

Jack's school recently had slipper day! All the kids got to wear thier slippers to school for the day. We saw Elmo, Dora, Thomas the Train, and many other kinds of slippers! I had to find a pair that fit over Jack's braces, so we went with the older look! I think they looked cute!

Tomorrow we have an appointment at the CP Clinic at CHOP in Philly. Grandma Josie is going along again -- because daddy is up to his ears in work these days.

We will see the whole team, get some hip x-rays, a status on our equipment, an RX for new braces -- and a full physical exam and eval for future Botox. It's going to be a loooong day, but it's always so informative.

Oh, I had a BIG "DOH" moment this morning...I took Jack to PT, we had a great session and as I was gathering our stuff I looked in Jack's bag where I ALWAYS keep the keys...they weren't there! I figured they'd be in the bag somewhere...so in the lobby I am taking a part our whole bag...diapers are flying...Jack's crawling over to a gentleman and trying to steal his cane (that was kind of funny) and we're in everyone's way. The PT asked if there was anything she could do and offered to keep an eye on Jack while I went out to the van. I looked in the back window -- no keyes...I looked in the side window and there they sat right next to Jack's car seat! I must have set them down when I was getting him out! So we called Daddy and he came to the rescue! He works about a half hour away from the therapy center so he drove over to us, we took him back to work and now I have his car. We'll have to get the van first thing in the morning because we need it for CHOP tomorrow. Oh well, this kind of thing happens!

I think Jack and I are going to go for a little walk on this gorgeous afternoon! I will update when we get back from CHOP!

Two Lines!

Wow, two lines! Welcome to life little bean!! We are so happy to know you are on the way...

I found out by taking a first response pregnancy test on September 27th 2006. I saw the second line appear and my heart skipped a beat. I loved you already.

I called daddy at work and he was so excited. He would have jumped up and down if he could!


Today you are 5 weeks old.

The changes to your growing embryo are not quite as drastic this week as they've been in the last weeks. Growth is now focused on their little head, which is starting to develop much more rapidly than the rest of their tiny body. This is because their amazing brain is undergoing some very crucial and rapid development in order to effectively regulate their heart rate, blood circulation, and other vital functions. As for the rest of their miniature body, what were simple limb buds last week are limb flippers this week and the tail is more expressed. Amazingly, within a mere five weeks your little miracle is already developing the rudimentary forms of their liver, pancreas, lungs, stomach and nasal pits while their little heart is already increasing its circulation. Your baby is now a whopping 4-6mm in length.

I am feeling quite pregnant. Very tired...very, very tired! I am also in need of looser fitting pants already!

Our Plan...

I did not send Jack to school yesterday. I spoke to his teacher and we decided it was probably better to keep him at home -- which was nice, we had a pajama day!

The neuro called later in the afternoon and confirmed that it was a seizure by my desription. We are to go back to 6 ml 2x a day and hopefully we won't have any more problems.

I am looking at this from the standpoint of I am thankful the medicine has been working for the past 2 years, and that we were obvisously not giving him something he didn't need.

The neuro said we'll discuss weaning in the future and I am totally fine with that! We will go for blood work in two weeks to check the medication levels.

Seizure?

Hello, I am so sorry I haven't been around -- things have been, well, as usual very hectic around here!

We saw Jack's new neuro two weeks ago -- he was AWESOME! Very direct but not condescending, open to questions, and also made some interesting observations and gave me a lot to think about. He ordered an MRI which I have wanted to get for quite some time and we scheduled an appointment to do nothing other than discuss Jack's entire brain!!!

During the appointment we made the decision to start weaning Jack from Tegretol because it's been almost 2 and a half years since his last seizure. I was very confident that this was the right thing to do. We are to wean over many weeks -- he was on 6 ml 2x a day, and we're only down to 5 ml 2x a day this week.

Well this morning Jack was in his booster seat eating breakfast and he had a VERY blank look, looked over to one side and he was moving his mouth like he was chewing and he was drumming his fingers (with his left hand) on his tray. I tapped him on the arm and said his name with no response...I then SHOUTED "JACK!!!!!" and he looked at me and made a sad face like he was going to cry...

I believe it was a Simple Partial Seizure

Which follows his diagnosis...

I called the neuro and spoke to his nurse and she's going to pull Jack's chart and have the neuro call with instructions.

I believe I'll keep him home from school today until we hear from the neurologist.

B is for BUSY!

This has been one of the busiest weeks EVER! The next few are very much the same -- lots of appointments, phone calls, paperwork, etc. We are taking a small vacation this weekend and I can't wait. We NEED A BREAK from all of this!

Jack went back to school and did really well. His eyes look great and are much straighter. Everyone notices how good they look!



I am so proud! Each year Developmental and Disability Services (the program that provides Early Intervention and SN preschool) has a benefit art auction at a nice restaurant in our area. They ask all of the children to submit artwork for the open house and art show this month and out of many entries Jack's was selected to go on to the benefit auction!!!! They only chose 20 pieces for the auction!!

DDS of Lebanon County

I haven't seen this masterpiece yet, and sadly we are out of town the day of the open house so I will have to wait until the benefit auction to see it for myself!!!!

Last year they raised a stunning amount of money -- all which benefits children and adults with disabilities in our county. Imagine, Jack's art will be BOUGHT and displayed by some well-to-do !!! I'm very, very PROUD!

I am soooo FRUSTRATED!!!!! I have had the RX for pediasure and resource 1.5 since JUNE and cannot find a supplier willing to help. Insurance company sent me through their phone system several times to the point where I can now recite it in my sleep...I always get a person that speaks like they're in a tunnel and they give me the same three phone numbers to call...I call the local suppliers and they act like I have three heads or tell me they can supply a different suppliment. NO ONE is willing to order it in for us!!! The pediatrician told me to take it up with Hershey's feeding team, and our dietician recently left, so I am playing phone tag with the new dietician and I am willing to bet she gives me the same three numbers that the insurance company did.

My local pharmacy (Eckerd Drugs) won't supply it -- they recommend we go to one of the local suppliers...takes me back to square one.

I called Walgreens because I purchase the resource 1.5 online and that customer service person couldn't tell me whether or not we could use the mail order system since we have no Walgreen's in our area. I asked what would happen if I send the RX in, and it wasn't able to be supplied...would I get my original RX (the piece of paper) back? She didn't know. I am not willing to part with the RX I worked so hard to get!

I am off to bang my head against a wall. Maybe the resource will automatically appear.

On a happier note, I was able to get Jack to talk for the camera!! Check it out!!

Jack says "Mama, shoes off" (sort of)





Jack says "Elmo"

Remembering Satoshi Kikuchihara

On September 11, 2006, 2,996 bloggers will unite to pay tribute to the victims of September 11, 2001.

Visit Site

Satoshi Kikuchihara, age 43.

Place killed: World Trade Center. Resident of Scarsdale, N.Y. (USA).

Satoshi was born 1958 at Tokyo Japan. He was the Chief Representative of The Cyuo Mitsui Trust & Banking Co.,Ltd. (WTC2 83F). He lead and managed his staff with warmth and kindness.

He was always gentle. He also favored various sports and arts. After 9.11, his family found tickets of NY opera and World-cup event for himself, his wife and daughter. Tickets never to be used.

Satoshi Kikuchihara will be honored by AngelaW on Jack's Blog. This was the 3483^th blogger to sign up for the 2,996 Tribute project.

A list of participants and links to their tributes can be found HERE

Campbell's Labels for Education

I am asking everyone I know to save labels for Jack's school!

About Labels for Education™

For more than 30 years, Labels for Education™ has been awarding free educational equipment to schools in exchange for proofs of purchase from the Campbell family of brands. It’s a fun, easy program where students, families and members of the community work together for a common goal.

Click on the link below to see eligible products and instructions on how to save the label!

If you would take the time to save the labels it would really help! If you live far away and would like to mail them to us, please e-mail me at ang_wilhelm@hotmail.com for our mailing address!

Thank you!



ELIGIBLE PRODUCTS

Jack and his Walker...

This one is for Aunt Ellie!

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!
*********************

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.