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.

Hello! I actually have a moment to tell you all what's been going on! I updated with three journal entries today and am going to go add some pictures too!

Since Saturday Jack has been pulling up to stand and CRUISING the furniture!!!!!!

It's amazing -- I can hardly believe my eyes!

Jack had PT this morning and she could hardly believe her eyes either. She feels Jack will be on his way to walking independently with no need for equipment (walker, etc.) in the future. She even talked about getting him a shoe insert for his left foot and keeping the DAFO for his right foot.

Someone pinch me -- I think I may be dreaming!!

Jack has never progressed this fast -- it's always taken months to pick up a new gross motor skill. I can't believe he put it all together so quickly. He can even get out of standing rather safely too!

Yesterday we had a WIC appointment and he pulled to stand and played with the other kids at one of those play tables with the wooden beads.

When we parked at the WIC office we had to park on the busy road and put money in the meter. At the red light there was a HUGE mac truck and Jack was in awe. I told him "WOW, look at that big truck Jack!" and he smiled and couldn't take his eyes away from it. After our appointment we went out to the car and he looked out into the street and said "Tuck." He remembered and was looking for the big truck and actually SAID the word! LOL, I am simply giddy!

I just had to share our amazing moments!

Wow -- what a week this has been! We had one or two appointments a day the ENTIRE week! I have never been so glad to see the weekend!

Jack had his EEG yesterday. First, it was torture for Jack. They wrapped him in a hospital sheet like a burrito and taped it tightly...it took the woman forever and a day to actually get the leads glued to Jack's head. Jason and I had to lay over Jack to keep him still for almost two hours. Jack screamed like I have never seen him scream before. He even bit his lip and was bleeding.. Jack did calm down but was still sobbing during the test. Jason said it must have felt like being abducted by aliens...such a strange environment -- not painful but plenty scary for Mr. Jack. I remember going through the same ordeal last year but Jack was much more aware of what was going on this year.

We met with his neuro right after. He said Jack's EEG looked much better this year. He said there's still slight activity but it's only here and there vs. constant like last year. He felt Tegretol was really good for Jack so we'll continue to keep him on it (he said for a few years in his opinion). I am grateful that the medication is working! We upped his dosage by 1 ml because Jack is almost 24 lbs (YAY!!!) and the levels we had taken on Monday were a little low. We'll go for labs in two weeks and then again in 6 weeks.

Now the unexpected and most exciting part of our visit with the neuro. The Dr. was asking me what Jack is doing gross motor wise and other areas. He was THRILLED to hear of Jack's progress since our last visit (4 months ago)...then the strangest, most beautiful statement came from the neuro. "He will walk." just like that. We didn't ask -- he just came out with it. Jason and I looked at each other like did we hear that just leave his mouth? Jason said "Wow, no one's ever said it as straight forward before" and the neuro went on to explain how Jack has the strength and ability and he feels it'll be soon (and not years like I was thinking). Jack was being very charming and engaging the neuro in "Jack speak" and we were explaining how Jack will mimic words or word approximations like if I ask him where his diapers are he'll repeat "per, per" or "pie per" the same with a bunch of other words. All of this happened in the span of a week....it's an exciting time for us right now. The neuro said he feels Jack will do well and it will come with time.

I can't tell you how scared I have been in the past few weeks. Jack was making progress but I had a lot of his therapists put doubts in my mind -- I won't go there now, as already Jack's proving them wrong! LOL. The last week or two was a virtual developmental explosion! I still can't believe it when I see Jack pulling up on everything, even using the walls and the front door.

We also discussed Botox with the neuro and he wrote a referral to a colleague of his that does botox injections. He felt now is the PERFECT time for botox. It'll probably be several weeks until we can get in for an appointment so in the meantime I would love to hear anything and EVERYTHING you know about botox!

Thanks for reading everyone -- I am so excited to share our great news. I will keep you posted on how Jack's doing!

Pictured is Jack pulling up to pet the puppy! (or as Jack says pa-pay) oh, and I don't know what's up with using his placemat under his legs...lol...he must have thought it would help.!

We had a great time at the beach. Jack did so many new things!

He LOVED the ocean and the sand. While playing in the sand he started digging and filling his dump truck and then would hand the digger to daddy!!! He did try to eat the sand once but he learned it's very yucky in the mouth!

Every day he ate breakfast overlooking the ocean -- and I have to wonder if he thought that was our new dining room!! LOL (hey ma, I love what you've done with the place!)

The boardwalk was another favorite. He loved the tram cars and the seagulls! We took him into an arcade and he sat right on top of the skiball lane and attempted to throw the balls to get points. Almost every day for lunch he ate a HUGE slice of pizza guess I'll be running for slices too! ha ha.

Jack was 'talking' so much too!!! Grandpa Bob was playing monster with Jack and would growl and Jack would growl back...soon after every time Jack would see Grandpa Bob he would growl at him! too cute!

HAPPY FATHER'S DAY to all the daddies and grandpas out there!!! First, I have added some new pictures in the June 2005 album! Jack and I are both exhausted these days. We've had one or more appointments every day last week and this week...and the next few weeks are looking to be more of the same! AND on top of that. our ISFP is being renewed -- boy I can't wait until we can catch a break! The Baclofen is providing a nice difference in tone. For Jack's low tone areas I haven't noticed ANY difference (which is a good thing!!) and to give you a good example of how his high tone areas are doing, this week at speech therapy the SLP stood Jack at a table (he did NOT have his DAFO's on because our SLP also does NDT massage). I was cringing because I don't like to see Jack stand without DAFO's -- until I noticed his feet were FLAT on the ground!! Now his ankles fell in like normal and it's not like he's cured of his tonal issues, but boy was it a shock to see him standing flat footed instead of on his toes or on the tops of his feet. I also noticed a difference in his right arm and hand right away. He still has spasticity and tightness but the Baclofen is helping! Jack pulled to stand at the coffee table again...this time it was such a smooth, effortless motion that I nearly fell over! He's doing very well. He's been stubborn with his walker lately...like collapsing his body on purpose or refusing to put his feet on the ground so I can't let go! Mr. Smarty pants! I think he needs a break too. We've spent a lot of time swimming last week. Jack LOVES the pool! I hope to get him in the water several times a week this summer. Jack's new SLP has started working with Jack using a picture exchange system. It's to help facilitate communication. There's a small wooden board with Velcro attached and you place small icons pictures on it. We've been working with the icon for bubbles, cheerios, ball, chocolate chip and lotion. Each time Jack wants something (we only do one picture at a time right now) he has to take the picture off the board and hand it to me or the therapist. Then he gets whatever was on the picture. The problem I have with the system we are using is the pictures are abstract. They are cartoon like drawings and I don't think Jack understands what the pictures are. I found a similar system on one of my catalogs called "Elliecards" and they use REAL photographs. Unfortunately the set costs $280.00! If this picture exchange system really works for Jack I may consider the "Elliecards." Since we're just working on a few pictures right now I may try to make my own...I would love to hear from you if you're familiar with using PECS (Picture Exchange Communication System). We are hoping that with practice Jack will learn the give and take of communication and in the mean time ease his ever growing frustration when we don't know what he wants or needs! We are looking forward to our beach trip coming up in a few weeks. I so need a vacation! We all do! I hope everyone is having a great start to summer. I will update again soon!

The appointment with the Developmental Clinic went very well. There was an educational/developmental therapist, a resident doctor and the developmental doctor. They examined and observed Jack (who did very, very well considering he normally cries at dr's offices these days). They asked a bunch of questions and we got a lot of positive and helpful feedback. Basically our goal was to be sure we were doing everything we can to help Jack (appropriate therapies, specialists, etc.) They commended us on how great we were doing with everything (and I'll tell you it helps so much when the dr recognizes the parents' efforts).

The doctor prescribed Oral Baclofen (a muscle relaxant) to help with Jack's tightness -- she feels he'll be on his way to walking with relieving some of the spasticity. I have read mixed reviews about Baclofen but am willing to give it a try.

She also mentioned hippotherapy (horseback riding) (YAY -- I wanted to do this) and constraint therapy (also have been interested in trying this as well). With constraint therapy (it's not as harsh as it sounds) we would systematically get Jack to use his right hand more and more by limiting the use of his left hand for very short periods of time throughout the day.

It was very informative and has given me TONS to think about. It's nice to know that there are many options for helping Jack. (and yes, the picture is one of Mr. Jack trying to escape out the front door).

We started working with a new SLP at the med center. This was our third visit and first full session (the first two were filling out evals and paperwork).

I cannot express how much I LOVE what he's doing for Jack. I have NEVER seen Jack respond so well to anyone this quickly before. And it's also the first male therapist we've ever worked with.

A few things he did that were totally cool...

He warmed Jack up by playing some games like peek-a-boo and funny faces (I know we're trying to get Jack to imitate the faces, but right now Jack was sitting back and letting the SLP entertain him)

He held Jack while he did some oral stimulation and deep pressure massage...

He bounced Jack up and down (and Jack LOVED this)

He put Jack in his stroller and ran with him around the therapy room (all the while Jack is shrieking with laughter). Using this technique he got Jack to repeat the word "GO" at the end of "Ready, set, GO!!!!!!!!!!!" So he would say "Ready, Set" and Jack would ever so softly say "Go" it made me cry!!!!!!!!!!

We also worked with the picture exchange system. We used cheerios and a picture icon of cereal. This was to work on the basic give and take of communication. Jack did well with this. Next week I am bringing some chocolate chips (or other small super treat) to use. And we'll only use them during therapy. I like this idea.

I told him I was so relieved to be working with him and also told him he got more reaction out of Jack in three weeks than some others have in nearly two years. He said not to sell myself short and to pat hubby and I on our backs for a job well done with Jack.

We'll continue once a week. Imagine, if he got Jack to use a new word already what will happen a few weeks from now!!!!!!!!!

I also went back and added pictures to past journal entries -- be sure to check them out!!