Meeting with Gov. Otter

I was one of the people that got an opportunity to meet with Idaho's Gov. "Butch" Otter when he was up here to visit on December 17th, 2008. I spoke to him about the recent decisions to cut Medicaid hours from 30hrs/week down to just 22hrs/week. This cut will have a dramatic effect on all those involved and I wanted to make sure that I tried to do as much as I could to hopefully change their minds.

The Governor listened to me as I spoke about Jamison, and why him and others like him so desperately need these hours. He told me what any one would think he would... he told me that "in these times" and so on about the state of our economy right now.

My question really now is if you take away these precious hours they need now when they are children, isn't the government going to be paying even more to help disabled adults, rather than help these children now and hopefully prevent even more spending in the future because they never got all of the assistance they needed when their brains were still developing and taking in so much more than if they were adults! These are the most critical years and yet they are considering cutting nearly 25% of their hours!!

After I spoke with the Governor they wrote a story in The Coeur d'Alene Press where it mentions both Jamison and I. It really made me happy to know that at least someone heard me, and someone felt strongly enough about my speech to recognize it. Now let's just hope that the Government really heard!


Like I said before, it is so important to make yourself heard. It doesn't take much out of your life to make a difference, even a small one. If we all did it, can you imagine the effect! Write to your Government Officials about your Medicaid hours being cut!!

Suckers Please!!

Jamison is learning so quickly I can't even believe it. I know that I haven't updated this in a little while and I'm probably forgetting many things, but his newest accomplishment is signing "please" when he wants a sucker!! It appears that he thinks "please" actually means sucker, but it's amazing that he's even doing this sign because we have never taught him that. He just picked it up from watching the other children at school sign "please"!


I am so proud of my little guy. He is coming so far and I know that his progress will surly continue! I am saddened however at the recent 1% cut backs through Medicaid that will be taking his hours from 30hrs/week down to 22hrs/week. Since he only qualifies for this amazing opportunity for 3 years total, it is sad to know that they are even cutting that down further. I know that I should be thankful for any hours at all with these amazing therapists, but to have the hours and then have some of them taken away just breaks my heart.

Please contact your appropriate Government officials if you are dealing with your Medicaid hours being cut also for DT or IBI Therapy. They can't help us if we don't make ourselves heard!!

Hi 5!

The most adorable thing happened tonight, Jamison and I went with daddy to work for a couple of hours and when daddy was gone Jamison and I practiced giving each other hi5s! It took only 20 minutes and this boy has it down pat! I love seeing his little moments of progress which are getting more and more frequent lately.

Presents

Jamison has received so many wonderful and beautiful presents this year. My favorite is a painting that his Great-Grandmother did of him. It is so beautiful and even Jamison liked to look at it. He did one of his little smiles with his eyes fluttering closed, so I know he loves it! I hung it on his wall in the bedroom. Take a look!

Jamison's 3rd Birthday Parties!

Jamison is so special we're having 3 parties for him! Our first party was with some of Justin's family; Auntie Katlyn, Grandma Gail and Greg, Great-Grandpa Dewey and Great-Grandma Janet and her two friends. They were all so nice and we had a good time. He got so many cute clothes from everyone and some cool cars and a really neat firetruck!


His second party was with my parents and my sister with Ryan and Bobby. He had a joint birthday with Ryan because he just turned 1 on the 23rd! Jamison opened his very first present this year! We were so excited, but not as excited as he was ripping all of the paper! My parents bought the cutest cake for them with little scary eye balls all over peeking at them. It was a very cute Halloween cake. The boys got so many adorable presents, and my parents picked up Jamison's favorite little piggy bank that counts as you put the tokens in it. It's very good for learning and he really loves it. Ryan even got a couple of fingers in the cake before we all got to sing!


His third party will be with the school on Wednesday the 29th, and they are going to have cupcakes with him. I know he's going to have a great time.


Enjoy all of his pictures and get ready to see my little pirate for Halloween!! (Here's a sneek pre-view of him!!!)

Jamison's Field Trip to the City Park

Jamison was scheduled for a field trip to Carver Farms to pick pumpkins and go through the corn maze... well, to make a long story short; they were closed! They forgot to tell us after all of the kids and parents made the long trip over there! Nice of them huh?

But on the bright side, all of the kids got to spend some time at the City Park and it was wonderful. Jamison had so much fun running around and walking on the sidewalks!! Here are some pictures for you to enjoy.

Baby Blues No More!

Well, I have had so much fun painting Jamison's room. For his 3rd birthday, Justin and I decided that since he is a "big boy" he needs a big boy room. No more baby blues and Blues Clues, we decided to go for a clean and very cute navy blue stripe and trim with a silvery color for the main walls. Jamison kept knocking on the door trying to see what we were doing with his room. It was so adorable, and I think he really enjoys it! Here is a look at before and after!

Jamison's Echocardiogram

I just got the information back from Jamison's appointment to check for heart defects. NONE!! What a relief. It took almost 5 days to get the results and I was so nervous, but I can not tell you what it felt like to finally hear that he is fine.

Jamison's Progress

Jamison's progress may seem small to some, but the change I've seen in him is quite remarkable. As of today, Jamison is currently signing: more, all done, and milk (which he uses in general for his bottle) He's seeming to understand even more signs like: put shoes on, come here, and sometimes stop.
He's interacting so much more with other peers, and adults also. He's doing pretend play at the kitchen setup they have at school. He enjoys being held and helped by all of his therapists, sometimes he even hugs them just for the heck of it!

Who is this little boy? Honestly, it's easy to forget what it was like just 1 month ago... Cried when anyone held him except for mom and grandma, could not communicate in any way. Didn't mind, but wasn't interested in his peers... wasn't eating basically anything...

Now I have been blessed with 3 things it seems, my sweet little angel Jamison, his wonderful new school, and the amazing IBI therapists, Occupational Therapist and Physical Therapist that have probably the hardest and most rewarding job of all. There is something to be said about these people that have devoted their time and effort into making my little guy the most he can be, despite his cries to just run around in circles and flap!

I don't know if I tell these amazing women enough just how much of a blessing they are to my whole family.

Thank you Ellison for your persistence and willingness to let Jamison have fun but still provide him with what he needs! You really are wonderful.

Thank you Kelly! Oh so much! You not only helped Jamison, you gave me the peace of mind that I have wanted for so long. You have literally changed my life and gave me the courage to tell people, "No, maybe he'll eat it next year!" Instead of feeling like I had to force feed my son so people would leave us be. All the time letting me sob about everything and being so sweet and such a good listener! That in its self helped so much!

Thank you Barbara, Katie and Raydene!! There are no words that could even begin to express how thankful and blessed we are to have you all. You have not only changed my sons life, but mine and people that you may or may not ever meet... everyone in my life is touched by the amazing work that you do. The coffee and the praise could never repay you all bringing my son to life like you have.





I am the luckiest parent in the world, and it has so much to do with the support that Jamison and I both have. Please remember to keep up on Jamison's progress! Soon enough you'll be seeing pictures from Halloween and his Birthday!! YAY!

"Bye-Bye!"

Today, Jamison waived "bye-bye" for the first time ever! I couldn't believe it when I saw it, and neither could his therapist. She has been working on this daily with him since he started school 3 weeks ago. 3 WEEKS AGO! That's it! And now he's waiving "bye-bye!" He didn't do it until prompted, but still... I'm amazed! Today I made him a purple lunch. It didn't go over as well as some of the other colors, but he was interested in most of it and hopefully he'll start to enjoy it.

At Physical Therapy Jamison went on the treadmill and also crawled under the "bridge" that Ellison set up for him. It's just so cute to watch him. He loved going up the stairs again and kicking over the bowling pins. I've never seen him so excited before! He's also saying "googoo" which is new for him. There have been so many new exciting things I can't even believe!


When we got home, Jamison enjoyed massaging his head with his new massager. It's now his new favorite toy, besides cars!

Well, don't forget... Jamison is turning 3!! October the 29th. Hope that you love keeping up on his progress as much as I love talking about it! Love Always, Shelly

"More Please!"

Yesterday, Jamison signed "more" 50% of the time while asking for his favorite fruit snacks!! This is a huge step for him. I have been working with him for a little over a year now on certain signs, so this feels like a huge accomplishment for me as well as him!

Today at school, Jamison immediately ran for the playground to see all of the other kids. He has become a little social butterfly! His favorite activities are playing with his trucks on the playground, and following the other children around with his mower or some other push toy. He still doesn't understand how to really "play" with the other children, he just likes to watch but he's still coming around.

He's still scared of babies. I'm not sure about all babies, but certainly ones that crawl! He's deathly afraid of his little baby cousin Ryan! If Ryan even comes within 5 feet of Jamison he gets up and runs away (literally)! And if he can't run away, he will start to cry and scream until someone helps him to get away!! He doesn't seem to like his other cousin either, he's 5 though. I'm not really sure why on that one, because he likes all of the other children at school, but if Bobby even comes near Jamison he will push him away. Two days ago I had both of the boys at the store and Bobby went to push the cart while Jamison was in the seat of the cart and Jamison used both of his legs to push Bobby out of the way! He wasn't really kicking, otherwise I would have had a problem with that bad behavior, but he was more like pushing himself off of Bobby to get away. I tell you what, he's a pretty good problem solver that's forsure!!

Anyway, he's doing great! Keep reading! Love, Shelly.

Speech Therapy

Jamison just had his second day of Speech Therapy. He sat on a waiting list for over a year and a half for a Speech Therapist, so I am so excited and relieved he finally has one. Today they are working on his PECS Cards (Picture Exchange Communication System) It basically is a little 1x1 card that has a picture of different things he wants to communicate like "ball, more, dog...." and when he is interested or wants something he hands us his card and we do that activity. We've been doing this system for the last year, and he seems to understand the concept of it, just not actually associate all pictures with their real meanings. I'm hoping that this continues to develop into something that will help him communicate! Wish him luck! Til next time - Shelly.

Jamison + Mud = Hose!!

Jamison had a pretty good day today. He met a lot of new friends during recess and found a certain liking for orange eggs and peaches.

After school, Janet wanted to see him. I took him over to her house and we watched him dress up in "big" shoes and throw the ball for the very pregnant dog, Kate. After all of that excitement he decided he wanted to go outside for a little while...

We took him outside and he immediately ran for the dirt road. For some reason he really likes that dirt road! He went up and down for a while, and on the way back he found a mud puddle... this is where all of the fun begins!!
He stepped in it and just stood there looking at his shoes! Where did they go?! Then he ran out and thought it was so amazing that he couldn't see his feet in the mud so he ran back. He decided he loved this mud so much that he was going to splash around in it for a while! He would run back and forth, all through the mud and then bend down and splash-splash-splash! He had more fun splashing in the mud then anything else all day.

After the mud, came the hose. He loved to run back and forth through the stream of the hose, and he loved to fill up the dogs water bowl over and over again.

It's times like these when I wish certain family members were here, to watch my adorable little son in action. To watch him smile and laugh and grow.

I love all of you and wish you all could have been here to see him. Please remember to keep up with Jamison's progress. Love, Shelly.

Adventures in Physical Therapy

Today was an amazing day, Jamison did so many new things during Physical Therapy!!

First off, when we got there he ran for the stairs. He usually cries the whole time when we take him to the stairs, but today he was fixed on going up and down them. First, he went up and spun at the top, then all of a sudden he decided to go up again, but not just up, he wanted to walk up like a big boy! He alternated his steps all the way up several times!! This takes strength and stability which he had a lot of! He was a regular superman!

Then he decided he wanted to tackle the bowling pins, he kicked them over so easily, like he'd been doing it for years, only he's only ever actually kicked them over 1 time purposefully! He must have kicked them over at least 50 times!! It was so amazing to watch.

He crawled for his favorite train under a bench that the therapist had set up, which he hates to do... and he also got on the toddler trampoline and marched as fast as he could in place. He doesn't really understand how to jump yet, or physically have the strength yet, but he does know your feet have to go up and down and he was amazing at it!

Basically, it was an awesome day for him, filled with so many fun and new exciting things...

Green Eggs & Jamison...

Jamison has a special diet plan that we incorporate into lunch everyday. He has 1 item from each food group with similar colors and different textures each day. Today the theme was "green" so, instead of coloring a meat stick with food coloring, which looks very icky by the way, we made him some green eggs. I was wondering how he would do with this considering eggs are wiggly and slimy feeling... but he loved it!

His diet today consisted of:

Protein: Green Eggs
Starch: Guacamole Chips
Veggies: Spring Vegetables Pureed (green)
Fruit: Pear Applesauce
Dairy: Key Lime Yogurt

and Green Lemon-Lime Jello for desert.

Jamison always does well with his yogurt, so this was offered first, he ate it with a big smile... then he decided to try the eggs, well... his first reaction when the food went in was gagging... he did not enjoy it one bit but then he decided to chew and believe it or not, he went in for seconds!! He enjoyed this meal plan so much we decided to copy it for tomorrows meal plan... who knows how the second time around will go, but I'm hoping better than the first even!!

This is just another example of how Jamison is changing everyday. He's learning to experience new things, even if he's been hesitant for a while, eventually he'll come around at least for a "taste test!"



We also purchased a little massager, it looks like an animal and each foot vibrates. Jamison loves this so much, I'm really going to have to go to Costco and stock up on batteries!! Every time he has it he puts it on top of his head and smiles and giggles. He also loves to massage the back of his neck, I'm not sure why he loves it so much but I'm sure to him it's an amazing sensory experience!

And believe it or not, I still see changes in this amazing little boy every single day, maybe they are small... and maybe most people wouldn't notice, but I do. I love to watch him change and grow, I can't wait to see what the future has in store for us!!

Love&Happiness ::shelly::

Jamison's First Day at his New Pre-School

We were expecting the worst; crying, whining, wet snotty shirts from him wiping his nose all over... but what we got was a smile. A smile so bright it could light up the sky. Jamison loves his new pre-school.

I arrived with him, planning on staying the whole day as usual with any therapy that we do... But when I left the room to observe how he responded to me not being there, he didn't even notice... he continued playing and enjoying his trains for a half an hour before returning to the room that I was in. I was in shock and so was his therapist. We decided that I could leave and be "on-call" in case of an emotional emergency; but that call never came. I had my first "literal" day off in 2 1/2 years. I could barely even figure out what to do?! Shopping without my little man, coming home to an empty house?? This isn't normal!! I enjoyed my day, but did miss him so much. I missed his little smiles and his cute little spinning.

Well, his day was full of adventure and fun. Jamison got to enjoy snack time and lunch time with the other children, he didn't eat what they were served, but did find it so nice to look and watch all of the other children eat.






















Jamison enjoyed recess outside in the yard. They have a beautiful little playground set up with all sorts of fun things for him to do. He particularly loved to "mow" the lawn with the bubble lawn mower, and swing on the swing set. Afterwards, I arrived with his OT and we had "Jamison Lunch Time" Kelly the OT, Barbara the IBI Therapist and I all sat down for lunch together with him. He did pretty well... he tried eating his yogurt with his fruit stick, so that was a pleasant surprise!

So, all in all... it was a fun filled day with all new adventures for Jamison. I'm so happy with his new Therapists and more so that he just loves it there... I'm just waiting to see how much he loves it when they actually start putting more demands on him... maybe not so much!! Thank you for keeping up with Jamison's progress... and always check back for more. They may be few and far in between, but they will keep coming.

Lots of Love Always,
Shelly

The Diagnosis of Potocki-Lupski Syndrome

Jamison was always a little 'different'. He was slow hitting his developmental milestones. After many tests with doctors and developmental testing done by the Infant Toddler program he was diagnosed with PDD-NOS when he was 1 1/2 years old.

Although he showed many signs of Autism I never felt like that was the only problem. I had always said to his Pediatrician that the diagnosis of Autism just seems to continue to be thrown around when he's showing some signs of it but certainly not all. I know that in most cases it fits perfectly, but in Jamison's case... I just never felt like it did. He did so many things that were not typical of it.

I felt lost in the spectrum. I felt like the answers they were giving me were just not right... So I made an appointment with a Neurologist at Sacred Heart Medical Center in Spokane, Washington. It's amazing how long the wait list is to see these specialists... it took me nearly 7 months just to get an initial consultation; and that's where my story begins:

It was August 18^th, 2008. I received a phone call from the Neurologist’s office, they had some news on Jamison’s blood work. “Jamison has a duplication on his 17^th chromosome, and the doctor will tell you more about it at your appointment next Wednesday.” I paused, I couldn’t bring the words out to say ‘what the heck does that mean?’ I politely thanked her for the phone call and swallowed the lump in my throat. I was on my way to therapy, I couldn’t stop and look up what she had just told me. 2 hours later I went online and looked up this duplication… Potocki-Lupski Syndrome.

As I was reading the article, I just couldn’t help thinking that ‘I could have written this!’ It’s almost and exact account of Jamison’s entire existence… how could this be? How could my son have this rare condition that has less than 50 people being described in medical literature?! Wait… that means, I’ll barely be able to find anything out about it… I won’t be able to stay up countless hours online reading about it, finding out about new therapies and personal accounts of success like when they diagnosed him previously with Autism that has a wealth of information…

The articles I have found online told me about some of the health problems due to this chromosomal duplication:

Low muscle tone –check

Poor feeding –check (make that double check)

Heart defects – not that we know of … yet

Developmental delay – check

Speech and learning problems – check

Autism – check

I remember being so calm once I finally saw the doctor. I remember taking notes and smiling, keeping up conversation… Learning that along with this rare condition, Jamison also has abnormalities that were found on his MRI. I even remember the drive home. I drove, with my husband, mother and Jamison in the car. There was barely a word spoken… I even noticed that I had been driving for a half hour in silence before I turned on the radio and pretended that this was not the absolute worst feeling I had ever experienced.

I got home, put Jamison to bed and fell apart… I remember just crying so hard and laughing at the same time just in shock. The laughter stems from the overwhelming feeling that of all people I know, I always seem to be the one with something different going on. Something no one usually has to deal with, something that most people can't even imagine. It must sound weird, crying and laughing… crazy sounding really. I thought, if it wasn’t for the laughter I would have been in a padded room to keep myself from myself! So, as silly as it sounds, I welcomed the laughter… the crazy person that I was listening to was myself… The calm, collected, information gatherer was gone… the person that spent countless hours a day doing therapy, talking to doctors, being a mother, while all the time being a wife and friend had left the building… at least for the moment. I needed to let my mind drift off. I just sat, without words… for probably 3 hours.

After I got done feeling sorry for Jamison, feeling sorry for myself… realizing what my friends and family told me was true; God doesn’t give you more than you can handle… I pulled myself together.

Jamison didn’t change that day I got this information, the love from his family didn't change when we got this information either, just what doctors and therapists call him. Just the medical description for that thing that makes him my little sweetheart, my little man, my miracle.

It’s hard when you hear a doctor say “mental retardation”. Actually, it’s heartbreaking… but that won’t change my love for my beautiful son, that won’t take his smile away from his cute little face, and that certainly won’t take away my hope…