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.
Thursday, September 28, 2006
Wednesday, September 27, 2006
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.
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.
Thursday, September 14, 2006
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"
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"
Sunday, September 10, 2006
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 3483th blogger to sign up for the 2,996 Tribute project.
A list of participants and links to their tributes can be found HERE
Friday, September 08, 2006
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
Thursday, September 07, 2006
Thursday, August 31, 2006
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!
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!
Tuesday, August 29, 2006
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.
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.
Saturday, August 26, 2006
Thursday, August 24, 2006
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.
Tuesday, August 15, 2006
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
Thursday, August 10, 2006
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!
*********************
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!
*********************
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!
*********************
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!
*********************
Monday, August 07, 2006
Thursday, August 03, 2006
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.
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.
Thursday, July 13, 2006
A Father's Heart...
Forty-three years ago, Rick was born without the ability to talk, walk or barely move. "They said, 'Forget Rick,'" remembers his father, Dick. "'Put him in an institution. He's going to be nothing but a vegetable for the rest of his life.' My wife and I cried a little bit but we talked and we said, 'We're going to bring Rick home and bring him up like any other child."
Dick knew deep down that his son was thriving on the inside, and he insisted Rick go to school. He believed with every fiber of his being that his son had something to say—and he was right. At age 12, Dick had a special computer built so that Rick could communicate. What were his first words? Not "mom" or "dad" as his parents expected. "The Boston Bruins were going for the Stanley Cup," Dick remembers. "The very first words he ever said were 'Go, Bruins.'"
Rick, born with the heart of a true athlete, made a request that would change their lives forever—he asked his father to team up for a five-mile charity race. Dick had never run in his life. "We finished the whole five miles coming in next to last," Dick remembers, "but not last. When we came across the finish line, it was the biggest smile you ever saw in your life. Rick wrote on his computer, 'Dad, when I'm running, it feels like my disability disappears.'"
After many local races, Dick and Rick take their new passion even further.
Even though Dick couldn't swim and hadn't been on a bike since he was 6 years old, the two used a running wheelchair and other special equipment and began training to compete in triathlons.
The pure joy Rick experiences during each race drives his father to the finish line again and again. "Rick can't make very many sounds," Dick says with tears in his eyes, "but he does [make a certain sound] a lot when we're out there competing. … You know he's happy and he enjoys himself."
So far Rick and Dick have competed in over 206 triathlons and 64 marathons!
Dick says his son saved his life.
Preparing to run their 23rd Boston marathon, Dick went to see a doctor about a tickle in his throat. An EKG revealed that Dick had suffered a silent heart attack. She informed Dick that he had a severe cholesterol problem and told him that if he weren't in such great athletic condition, he would have died 15 years ago!
"When [Rick] asked me to start pushing him that first race," Dick says, "I was not a runner and I was kind of overweight—maybe becoming a couch potato. He's got me in the best shape of my life and I just love to be out there competing with Rick. … Rick is a fighter and he never gives up. To me, he's the athlete and I'm just out there loaning him my arms and legs so that he can compete."
What does Rick want people to know?
Rick is a graduate from Boston University with a degree in special education, and he even lives on his own. Through a special computer he is able to communicate his thoughts.
"Until my dad agreed to run that first race, I had no chance," Rick says through his computer. "My dad is my everything. He has made my dreams come true. To steal a line from a song, my dad is the 'wind beneath my wings.'"
Video of The Father/Son Team
Dick knew deep down that his son was thriving on the inside, and he insisted Rick go to school. He believed with every fiber of his being that his son had something to say—and he was right. At age 12, Dick had a special computer built so that Rick could communicate. What were his first words? Not "mom" or "dad" as his parents expected. "The Boston Bruins were going for the Stanley Cup," Dick remembers. "The very first words he ever said were 'Go, Bruins.'"
Rick, born with the heart of a true athlete, made a request that would change their lives forever—he asked his father to team up for a five-mile charity race. Dick had never run in his life. "We finished the whole five miles coming in next to last," Dick remembers, "but not last. When we came across the finish line, it was the biggest smile you ever saw in your life. Rick wrote on his computer, 'Dad, when I'm running, it feels like my disability disappears.'"
After many local races, Dick and Rick take their new passion even further.
Even though Dick couldn't swim and hadn't been on a bike since he was 6 years old, the two used a running wheelchair and other special equipment and began training to compete in triathlons.
The pure joy Rick experiences during each race drives his father to the finish line again and again. "Rick can't make very many sounds," Dick says with tears in his eyes, "but he does [make a certain sound] a lot when we're out there competing. … You know he's happy and he enjoys himself."
So far Rick and Dick have competed in over 206 triathlons and 64 marathons!
Dick says his son saved his life.
Preparing to run their 23rd Boston marathon, Dick went to see a doctor about a tickle in his throat. An EKG revealed that Dick had suffered a silent heart attack. She informed Dick that he had a severe cholesterol problem and told him that if he weren't in such great athletic condition, he would have died 15 years ago!
"When [Rick] asked me to start pushing him that first race," Dick says, "I was not a runner and I was kind of overweight—maybe becoming a couch potato. He's got me in the best shape of my life and I just love to be out there competing with Rick. … Rick is a fighter and he never gives up. To me, he's the athlete and I'm just out there loaning him my arms and legs so that he can compete."
What does Rick want people to know?
Rick is a graduate from Boston University with a degree in special education, and he even lives on his own. Through a special computer he is able to communicate his thoughts.
"Until my dad agreed to run that first race, I had no chance," Rick says through his computer. "My dad is my everything. He has made my dreams come true. To steal a line from a song, my dad is the 'wind beneath my wings.'"
Video of The Father/Son Team
Monday, July 10, 2006
Surgery in 6 Weeks...
I hope everyone had a wonderful 4th of July! We spent it with the Wilhelms in Wildwood, NJ. I never wanted to leave! We had a great time. Jack surprised us by eating anything and everything in sight! He was so good the entire time. I am not sure he wanted to come home either!
Check out the
JULY ALBUM!
for pictures!
Jack had a follow-up exam with his eye doctor this morning. He was pleased with how well the eye patching is working. Jack is now using the "lazy" eye almost as much as his other eye! So he is on his way to developing the use of both eyes together (binocular vision) which is very important in life.
The somewhat expected news is Jack will need surgery to correct his eye muscles in his eyes. The patching is not effective in correcting this -- so it will be surgically corrected on August 30...just about 6 weeks away. He needs surgery on both eyes.
Eye muscle repair is surgery to align eyes or correct eye muscle abnormality.
Description
The surgery is most commonly done on children, but is also performed on adults with similar problems.
While the child is under general anesthesia (asleep and pain-free), a small incision is made in the tissue between the eye and eyelid. One or more of the muscles of the eye are strengthened (resected) or weakened (recessed) to allow proper position and help the eye to move correctly. After a few hours of recovery, the child may go home.
Jack will be out of school and therapy for a week due to the risk of infection. He can't go swimming for 4 weeks following surgery either (so we better get all of our swimming in NOW -- lol). He needs to avoid rubbing his eyes and we'll have to put a cream in his eyes 4 times a day.
I would love to hear from anyone else who's child has been through a similar surgery. I am not sure what to expect.
We have several pre-op and post-op appointments scheduled. If the surgery isn't a success, it may need repeated within 6 weeks' time.
Please keep Jack in your prayers. I will update everyone with any new information.
Have a great week!
Edited to add:
Okay, so I found a good article explaining Esotropia (the medical term for crossed eyes).
I thought this was a great way of explaining the patching vs. surgery.
Treatment of congenital esotropia usually requires eye muscle surgery. Before surgery is performed, other factors must be considered. If amblyopia has developed in one eye, this poor vision must be treated right away. This is accomplished by patching the better eye to force the brain to use the eye with poorer vision. Though this will not correct the eye crossing, it will equalize the vision which improves the prognosis for a successful outcome from surgery. The presence of farsightedness must also be detected prior to an operation. Though this is an uncommon cause of esotropia in this young age group, glasses must be tried when there is significant farsightedness present as glasses, alone, may diminish the eye crossing. (See Accommodative Esotropia)
Children do not outgrow congenital esotropia. Surgical correction is usually recommended between six and fourteen months of age. The reasons for correction go beyond the obvious drastic improvement in the child's appearance. When the eyes are misaligned in childhood, binocular vision, or the ability of the brain to use the two eyes together, does not develop. Early alignment of the eyes allows for the development of brain to eye communication which results in enhanced depth perception, fine motor skills, and the best opportunity to maintain good eye alignment throughout life. Even after successful surgery, close follow-up is necessary to detect associated eye problems. Vertical misalignments of the eye, especially when looking to the side, recurrent eye crossing and amblyopia may occur several months or years later.
To read more here’s the link:
ESOTROPIA
Thursday, June 29, 2006
ARRRRGGHH!!
I temporarily, royally messed up Jack's Blog!!! I was in total panic mode. The only thing I could not recover were my links on the right hand side, but those are easy to add!
Thank goodness everything's working again -- I would have stayed up all night trying to fix it! So if anyone caught my BIG oops -- sorry! We're up and running again!
Thank goodness everything's working again -- I would have stayed up all night trying to fix it! So if anyone caught my BIG oops -- sorry! We're up and running again!
Wednesday, June 28, 2006
Tuesday, June 27, 2006
Video Poll...
***Thanks everyone for voting...I have decided to do a video album that works a lot like the photo albums! I am getting rid of the poll now :) ***
Please take a moment to vote in the Video Poll over on the right hand side of the screen. If you can't view the videos please comment here to let me know which ones aren't working!
(You will need Quicktime installed to view the videos)
View Jack's Videos
THANK YOU!!!
Please take a moment to vote in the Video Poll over on the right hand side of the screen. If you can't view the videos please comment here to let me know which ones aren't working!
(You will need Quicktime installed to view the videos)
View Jack's Videos
THANK YOU!!!
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