The Marathon Month

Hello,

I have added some new pictures! Check out Jack's Photo Albums The pictures are hosted by Snapfish -- you need to sign up using your e-mail address. It's free, quick and painless, I promise! Please let me know if you have any questions.

Jack had a great PT session this morning. It's usually the big things that get us excited, but today I noticed some subtle changes in Jack. Today he was leaning forward and using his walker properly. It was the first time it truly sunk in. I could see it registering on his little face...he smiled and laughed (which is RARE during a tough PT session) and it finally seemed to click for him. I can't wait to practice some more tomorrow. Things are going to change -- I can FEEL it (yes, I just referenced a Beck song, LOL).

On Monday we saw Jack's developmental pediatrician/Rehab doctor. She is an amazing doctor. She sort of ties everything together for us locally and loads us up with all the prescriptions for therapy and equipment. She's a good resource to have and I sort of just throw everything at her that's happened in recent months. I am glad to have her as part of our team.

This month has been beyond hectic. I am so glad tomorrow is February! We've truly had appointments every day of the month. We've also showed our house THIRTEEN times...that's 13 times I had to load the poor dog into the back of the van...that's 13 times I had to clean the house to a spotless condition, that's 13 times I had to drag Jack and the dog out of the house for 2 hours at a time. I am SO READY FOR THIS TO BE OVER!!!! Ahh, feels a bit better now that I've unloaded all of that. I cannot wait!

We're also trying to get the transition from Early Intervention (Jack's current therapies) to preschool and hospital therapy. Any which way we look at it we are going to be one busy family. Jack will most likely go to school in the mornings several days a week. Since he is getting botox he will need intensified therapy to maximize the benefits. So that means traveling to Middletown 4 or 5 times a week...on top of our usual doctor/specialist visits, trips to CHOP and school. I know we can do it. I know we have to do it! Luckily the intense therapy won't last forever and I know this is going to help Jack. Just somebody check in on us every now and then to make sure we know what day it is! LOL, just kidding!

Well, it's rather late for me to be on the internet and I still have toys to put away! I hope everyone is doing well. Thanks for reading.

Botox Evaluation at CHOP

We had our big appointment yesterday at CHOP. Jason took the day off to go with us -- I am so glad he has the opportunity to do this when these major appointments come up. We left the house around 8:00 am and made pretty good time to Philly (even stopping for Starbucks 1/2 way there). I love the hospital campus, it's nice (well we've only seen one part of it called the Seashore House)...the parking garage is located just steps away and the building is pretty easy to navigate.

We saw Dr. Drake a doctor of Physical Medicine for the Botox evaluation. He was so, so nice and Jack liked him too! He looked at Jack's muscles and examined his range of motion and even had Jack walk with a walker in his bare feet. He thinks Jack is a perfect candidate for Botox and feels he will do quite well with the injections. Jack will get 10 different areas injected. 3 places on each leg and 4 areas on his right arm. He will be sedated for the procedure and we will most likely end up spending several hours at the hospital until it's all done. The actual injections take only minutes to do, but they have to be very precise and actually use electrodes to be sure they are in the right muscle. It sounds very thorough.

I am so excited -- I have read so many good experiences about Botox and how well it works for kids with CP. The doctor thinks Jack will really be able to "take off" walking at first with his walker and then independently!!!!!!

Sometimes when I am rocking Jack to sleep I imagine the day he takes his first steps. I've even had dreams of Jack walking and when I wake up I am left happy and somewhat sad at the same time. It feels so good to know there's so much out there to help kids like Jack. With school, botox, and a new house waiting for us life certainly isn't boring over here!

Jack had a hard time going to sleep last night and when he started crying I went to rock him a little and noticed he felt a little warm. I thought it was just hot in his room and didn't think much of it. He still didn't settle and Jason went in to sit with him for a while and we noticed Jack's nose was running like a faucet! I took his temperature and it was 99.3 which isn't terrible but still above normal. We gave him a little medicine and he finally went to sleep. Today his nose continues to run and he's got a cough and a slight fever. He's acting a little under the weather too. I hope it passes quickly, I will update when I can.

School Daze...

First of all, sorry for my lack of updates lately! We've been showing the house nearly every other day and we've had many dr and therapy appointments this month as well! I can't believe it's almost the end of January...We are getting excited about moving. Let's all hope I can post a SOLD SIGN soon!!!

We saw Jack's neurologist earlier this month -- and got a good report. No medicine changes or anything this time. Short and sweet -- and I hope it stays that way! We go back in 4 months for blood work and another check up.

Jack also saw his eye doctor and we are now patching the right eye 6 hours a day...poor Jack, he hates it but he's tolerating it fairly well. We will go back in a month for another exam. We are still hoping to avoid surgery.

We had his evaluation for preschool this morning...he was such a good boy. We had to go to a new building and meet new people and Jack jumped right in and started showing them all he can do. There's actually one final meeting set for next month that will determine how long he'll go and for how many days a week. He'll be getting OT, PT, ST, and vision therapy as well as class time when he goes to school. There's even a yellow bus that can come pick him up and everything!!! I haven't agreed to that yet -- I figured I'd want to drop him off the first few times and then, perhaps, I'll consider the bus. Our baby Jack isn't a baby any more...time to start calling him big boy Jack!

He unfortunately had a bad tummy ache for a few days...Although when he was cranky I didn't know it was his stomach that hurt. It turns out he was severely constipated...it seems I need to find a new balance for the Miralax...either he gets too much or too little and both aren't good. I am probably going to try a half dose every day vs. a full dose every other day. Keep your fingers crossed for his little tummy.

Jack now weighs 26 pounds and is 35 inches tall! That's pretty good growing -- even though he's still on the small side for his age. His appetite has been great and he continues to eat and eat and eat! A new favorite is "big kid" cereal. He's enjoying corn pops and honey combs! LOL. He also had his first Oreo Cookie dipped in milk the other night. The look on his face was priceless. Almost as if he couldn't believe anything could taste quite that good! He was a chocolatey mess -- way too cute!

I also realized I haven't taken any new pictures since Christmas! I have to get on the ball here -- or there won't be any January 2006 photo album! That would be a first. So for now, here's one of the little family on Christmas Day.

Umpa...

We have some really terrible family news. Jason's grandpa Jim (we called him Umpa) passed away early yesterday morning. He was a wonderful guy -- handsome, smart, and comical! He loved to top off everyone's wine glass and watch us all have a good time. He adored Jack as well. Jack was actually named after his late wife Jackie who passed away right before Jack was born. Umpa came to the NICU every other day and sometimes got scolded by the nurses (didn't always ring in before hand...lol) but they learned to love him too. We miss him so much and are still in shock. Our thoughts are with Sarah and her family as well. Services are being held later this week.

In the past week we listed our house for sale and over the three day weekend worked like we've never worked before. Our house is SPOTLESS! Never has it looked this good! LOL -- we actually couldn't have picked a better time for all of the repairs and cleaning because we had our very first showing yesterday afternoon. I still don't know what they thought but I will find out hopefully today.

Jack has been hugely cranky the past week. I was near my wit's end!!!!!!! He would cry at everything he would want to be held and then cry because he wanted down...one toy would make him laugh the next would have him in tears...I think it may be partly due to both mommy and daddy being super busy the past few days and also I noticed finally, yes finally, the last of his two year molars are about half way through. I am not one to blame everything on teething, but now his crankiness makes a little more sense.

He has put two words together on several occasions....he pointed to a big ball and said "Ball, go" meaning he wanted me to throw the ball!!!!!!! He also said "Pup go" when the puppy was in his way!!!!! LOL. He still lacks what I would call a functional communication system which leads him (and mom) to become frustrated but I am SO PROUD, SO VERY PROUD of his accomplishments. His little voice is so cute and it's so nice to hear him use it.

Our holidays were very nice. I spent three days cooking and haven't cooked since (thank's Grandma Linda!) LOL we had our families over and had a wonderful day. Jack loved opening presents!!

This month we see a lot of doctors -- but top on my list is the CHOP CP Clinic -- where he'll finally be evaluated for botox!

I added some new pictures -- be sure to check them out!

I am probably leaving out a ton of stuff, but I am tired and will hopefully be able to post more.

MERRY CHRISTMAS!

Love, Angie,Jason
and Jack Riley

If you're still not sleeping, check out the Norad Santa Tracker!

Jack's Specs...

Well, take a look everyone! Jack looks so handsome in his new glasses!



He was such a big boy yesterday. I was so proud of him. He was smiling and laughing and flirting with the ladies who were doing some last minute shaping and fitting of his glasses. He'd let them put the glasses on and then he'd turn to the mirror and give a huge cheesy grin! He continued to wear them while we went for groceries and then wore them in the car the whole way home. He did need a break right after dinner but today he's worn them all day long (except during his nap of course).

Daddy also gave Jack a very nice big boy haircut. Jack didn't like it very much but I think he looks great!

Over the weekend we had a wonderful family dinner with the Wilhelm clan. It was very fancy and Jack could not have been a better little boy. Grammie Tina just e-mailed me this picture of handsome Jack all dressed up! What a nice time we had. (Forgot to add the picture the first time around...ooops)



Grandpa Ray and Grandma Kim were over to celebrate Christmas with us on Sunday. Jack loooved opening his presents. The little race car is still the first toy he goes for when digging in his toy chest.

Jack was trying to help me wrap gifts this morning but I didn't tell him he was actually making a little more work for mommy, so I put the presents away until he went down for a nap.

We are looking forward to a wonderful Christmas -- can't wait to see everyone. I will be sure to post an update and more pictures soon.

Early Christmas Gift!

Hello and good morning!

We've had a couple of really busy weeks! Jack saw his eye doctor last week. Jack's left eye is still turning in quite a bit, so we are to continue patching two hours a day and he also prescribed glasses to help strengthen Jack's eye muscles. If the glasses and patch don’t stop the turning in of his eyes he may need surgery. My heart sank when he said that. I understand it’s a “simple” surgery but I am still not prepared to watch him go through anything like that. I’ve sort of been proud and relieved that he hasn’t had any surgery since the NICU. It’s coming up on three years since his first/last surgery. So I am determined to take the glasses seriously and wear them on him religiously.

Over the weekend we went to pick out a pair of glasses for Jack. He looks so handsome and grown up! They are wire rimmed, and a light blue color. Luckily we liked that pair because it was one of the only pairs that fit his tiny face! They will be ready in a week.

Jack's using a lot of new words! He's been saying help, cookie, car, go, ball, co-co (f0r cheerios), nana (for banana), and still singing like a pro with twinkle, twinkle little star at the top of his request list!

Jack finally discovered the presents under the tree -- he actually opened one last night and is now proudly playing with a new toy. I hid the other ones upstairs in his closet for now!

We finally have an appointment for an evaluation for Botox injections!!!!! We go to CHOP On January 21st and about two weeks later the injections will be scheduled. At CHOP they do the injections under sedation. This is so they can be very, very precise with which muscles they inject the botox. I am a little nervous about the sedation, but trust that this is the best way for Jack at this age.

We are looking forward to Christmas and spending time with family and friends. Only a few weeks until Santa comes!!!! YAY!

Just this morning I have added a mailing list sign up option as well as a guestmap option. Both are pretty cool in my humble opinion! Be sure to check them out!

Happy Holidays!

We had a very nice Thanksgiving holiday this year. Jason was off work for several days so we were able to spend a lot of time just hanging out and decorating for Christmas. We had a scrumptious dinner at Grandma Linda's and just finished the leftovers this week!

Unfortunately Jason, Jack and myself all came down with a cold -- YUCK! I took Jack to the pediatrician on Monday and she prescribed an antibiotic. He's also cutting two year molars so he's been a bit cranky. I hear him stirring now, and he's supposed to be napping!

Jack got his new braces and they are great. They are much taller than the other ones but with the hinged ankle he's more steady on his feet. He's also becoming more frustrated and I can tell he wants to walk so badly! We are still on the waiting list for Botox injections -- I have a feeling once we get those there will be no stopping him!

Here is a picture of our Christmas tree. Jack loves the tree -- specifically he finds it a perfect place to put his blocks and other small toys! He hasn't discovered the presents underneath yet, but I have a feeling there may be some re-wrapping in my near future!

I figured out video!

Let's hope it works -- opinions please! Can you see the video? How long does it take to load? It's a quicktime movie, so you'll need the Quicktime Player.

Also, if you get a white screen after the video loads, try hitting the refresh button (or F5 on the keyboard). This worked for me.

This video is of an 11 month old Jack Riley, very messy guy eating his cereal. Can you believe how much he's changed? I remember that day like it was YESTERDAY!

What a week!

LOOK MA, NO HANDS!



First, our eye appointment – all looks good we just have to do some patching with the left eye now. The ‘trouble’ started after we waited for over an hour in a packed waiting room – the doctor was just about to come in to see Jack and Jack had a massive, massive, messy situation occur in his diaper. I excused us to the rest room only to find someone must have been taking a shower in the sink because it took them FOREVER and a day to get out of the bathroom. Well, then I see there’s no changing table (in a PEDIATRIC eye care center) so I had no choice but to lay Jack down on the ICKY bathroom floor. He’s screaming (who wouldn’t?) and then I see the extent of the situation. All over his legs, socks, pants, onesie, shoes, BRACES, you get the picture, I am sure. I had no idea what to do. Luckily I had a shopping bag in my back pack so I piled the dirties in the bag along with the dirty diaper and wipes and changed Jack’s clothes. The only bad part is the last time I packed the diaper bag it was warm out. So all I had was a onesie and jeans that were 4 inches too short! So out we came Jack with ‘capri’ style jeans, no shoes, no socks and a onesie. In cold weather. Meanwhile I am sweating like a hostage because my adrenaline was pumping – the doctor was waiting, Jack was a mess and I had to tote around a very stinky bag…oh boy.

Then the doctor wanted to get a look at Jack’s optic nerves so he tilted the chair back (like in a dentist’s office) and had me do some sort of Alligator wrestling hold on Jack. My legs were wrapped around Jack’s legs and I had to hold Jack’s arms and head completely still. Well, you know how strong Jack can be – so the Dr. called in a male student and a male nurse…so poor Jack and I had three strange men holding us down. It was miserable. I was sweating and Jack was crying…I understand the importance though but boy, isn’t there a better way? Poor Jack. This is the part that makes me feel so guilty. What 2 year old has to go through this kind of ‘torture?’ Anyway, we survived, and both got a hot bath as soon as we walked in the door.

The eye doctor wants to follow up with the patching in a month...they won't have to examin his optic nerves so it should be less stressful! And I've already repacked the diaper bag with more appropriate attire.

Later in the already busy week we showed up at speech therapy on the WRONG DAY!! I almost cried...we just hopped back in the car and drove the 40 minutes home only to return the next day for our correct time. We are so looking forward to the weekend!

Jack's braces are ready! We go to pick them up on Monday -- woo hoo!

I cannot believe next week is Thanksgiving -- where are the weeks going????

Prematurity Awareness Day is TODAY!

Honor Jack Through The March of Dimes

During November – Prematurity Awareness Month –
Help Send a Message of Hope for Premature Babies

Babies are in crisis today. Nearly half a million are born prematurely every year and the number is rising. Premature birth is the number one killer of newborns and a major cause of serious health problems. It costs society billions of dollars every year. That is why the March of Dimes has designated November as Prematurity Awareness Month - to let us know that premature birth is a crisis in our country and to bring people together to help give all babies their 9 months.

The March of Dimes is leading a national effort to save babies from premature birth by funding research to find the causes and by supporting local programs that offer hope and help to families with a baby in intensive care.

In November, visit www.marchofdimes.com and find out what you can do for pink and blue to help prevent premature birth. You can show you care by wearing pink and blue, raising awareness with wristbands, car magnets and ribbons. You can spread the word about the problem of prematurity by sending e-mails and letters. You can help pink and blue sweep the nation by organizing local events like pink + blue Jeans for Babies®. Visit www.marchofdimes.com for more ways to help give all babies their 9 months during November – Prematurity Awareness Month – and any time of year.

A Difficult Week

Our family has had a great loss this week. Sadly, Nana Wilhelm passed away on Sunday, November 6th, 2005. We will miss her dearly. She loved her children, grandchildren and her great grandchild -- which is Jack. Services were held yesterday -- it was a beautiful dedication to a wonderful lady. We miss you Nana!





Edited to add another picture. This one is of Great Grandma Olga and Nana Wilhelm holding Jack on his first birthday.

Cook-ook and Poor Tigger

Jack has a new word. "Cookie" (although he says "Cook-ook") he caught on to that one really quick! His favorite are the EL Fudge Stripes -- he's had many a fudgey smiles this week!

Daddy was away in California last week...we missed him terribly! He's home now and Jack and I are so happy! While daddy was gone we got to spend time with Grammie Tina, Grandpa Bob, Tori and Uncle Ben as well as Grandma Linda and Grandpa Ray!

We also had a play date with Danny, Olivia, Abby and Tony this week. When I get the okay from the mommies I will be sure to post some pictures! Jack was a little cranky -- but ended up having a lot of fun. It was nice to get together with my friends as well - it's been a long time since we've seen each other.

Jack has turned into quite the little singer. His solo debut was "Twinkle Twinkle Little Star" He also thinks it's fun to request this song about a hundred times before bed! It's constantly in my head now. LOL!

We have some sad news too -- Jack's Bouncing Tigger (as seen in the picture) had an unfortunate electrical wiring boo boo and had to be, um, thrown away. Jack doesn't understand where is best friend has gone and continues to search for him in his basket of stuffed animals. Poor Tigger...poor Jack :(

I can't wait to figure out how to post video -- anyone have any tips? Any good (FREE) video hosting sites? Comments welcomed!

Well, time to go clean up before Jack wakes from his nap. I hope everyone enjoys this gorgeous day!

Treat, Treat...

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

OOPS!!

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

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

Good night everyone!

Trick or Treat!

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

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

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

Feeding Team and New Braces

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

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

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

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

4:00 pm
1 piece of raisin bread

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

8:00 pm
½ Banana

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

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

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

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

Roller Jack

Hello everyone!

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

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

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

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

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

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

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

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

Have a great afternoon!

Welcome to Jack's Blog

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

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

Going to CHOP's CP Clinic was the BEST decision we have made regarding Jack's medical care. I cannot describe how great it was -- it's hard to put into words!

Jack was the best kid EVER that day. The car ride went smoothly, no traffic, found the hospital and parking area with ease....even had time to get a snack and sit for a little before the appointment.

First, we saw the OT and she feels Jack should be wearing a hard (custom made) splint on his right hand to sleep at night. She gave us specific stretches to help keep Jack's range of motion and was overall very informative! She said when we do Botox, Jack should have increased OT for a few weeks following in a hospital setting. So when we go for ST next week I will be asking about OT as well. I think Jack had a mini crush on the OT -- she even let Jack keep one of her balls for the rest of the visit!

The PT was next. We LOVED HIM!! Jack doesn't usually do well during rigorous physical examinations. He hates being stretched and measured and HATES lying down on exam tables. For some reason Jack was totally fine during the exam. They got a good look at Jack's muscles and he was showing off his skills and overall just charming the pants off everyone. The PT feels Jack should get Botox in his arm and legs. He feels we should get Jack his own walker (right now we're borrowing one). He suggested the same type of walker (a reverse K) but adding on a flat arm support for his right arm. He feels with that support Jack will be able to push off with his elbow and spend less time concentrating on holding on with his right hand. He said with a new walker Jack should "take off" and we'd "be in trouble" LOL LOL!!!

We then saw the ortho. Jack had an x-ray of his hips when we first arrived. The ortho pulled up his x-ray on the computer and said everything looks GREAT! He was a gentle man. A little quirky, but very nice and thorough. I asked his opinion on Jack's type of CP. I mentioned that he seems to have involvement in both legs and the label hemiplegia doesn't seem to fit perfectly. He said yes, Jack does have mild involvement in his left leg as well and he would consider Jack to have diplegia and hemiplegia or we could call it triplegia. It was great to have someone answer HONESTLY and not just go with the hemi label. The ortho then went on to lament about labels, and how it doesn't really matter what we call it and I reminded him that as a parent we wish to know EVERYTHING about our kids. I want terms. I want technical information, etc., etc. It was again NICE to have someone treat the parents as a part of the team. He was great and we plan on following up with CHOP's CP clinic every six months. We'll keep all of our specialists at Hershey except the ortho stuff. Anything ortho related we are going to go to CHOP.

The ST was last and Jack was spent by this time. He didn't 'perform' for her but I was able to ask some questions and get some input. She feels we should continue with a wide range of speech therapy. She feels we should concentrate on sound production. I told her Jack was great at making the "B" sound...so she said we should go throughout our day and concentrate on the letter B...and so on as he does have a few sounds he's consistent with. She also said we should continue to work on the concept of give and take. She was encouraged that Jack can repeat some words and word approximations and wasn't too, too concerned about his lack of consistency. Like the other week, he said truck but hasn't said it since. This morning he said Na na (for banana) but who knows if we'll get it tomorrow? She also explained a little more in detail how to use switches. We are set up with the lending library and can rent communication devices. She said we should rent the basic one button switch again (we had it for 6 weeks but had no idea what to DO with it). She explained it's not about motor skills (I was confused because why would Jack need to use a switch if he can point?) but she said there is something that needs to click for Jack on a very fundamental level. So we should not program the switch to say anything at this point. We should set up two switches with two choices behind them. Use things that Jack does NOT have words for yet. Let's say blocks and cups (two favorite toys these days). We would put one switch in front of the blocks and the other in front of the cups. Jack needs to physically make a selection by pressing the switch for the item he wants. It never really clicked until she explained it that way. She said we can't move on until we do this step...that this will help build a strong foundation of the concept of communication. Yes, Jack can press even the tiniest of buttons, yes, he can say some words, and yes, he can point. But using the switches aren't about any of those things (like I had originally been a little insulted because I thought Jack was too advanced for those)....but I now realize it's the physical act of making a choice that's important. Whew, sorry, that was LONG! I hope this makes sense!

We left with a great feeling -- and like I mentioned before I am SO GLAD we decided to go.