Javad's first move

Well, school is out for Javad. Happy Valley Elementary is being destroyed. It is kind of sad. Stesha and Simon both went to Happy Valley...my sister went to Happy Valley and now a new school has been built and Javad will go there next year. It is both an elementary and middle school, so essentially he will be in the same building for 8 years.

Javad will re-do kindergarten next year so we can get all his equipment taken care of. He will also start a hybrid schedule next year, staying until 1pm. He will be in class all morning and then get his "specials" during the next hour. This hopefully will help him in the long term.

He is doing well! He loved school...we are going on some field trips this summer (just the family).

It's going to be great! I am excited!

Shannon

Maybe not so up to date

Okay, so I committed long ago that I was going to keep Javad's blog more up-to-date, but here it is more than a month later and no post.

Well, that stops today. HERE IT IS!!!

Javad is doing really great! Moving schools in January has been a godsend. The teacher is fabulous, the students really accept him for who he is. It has been awesome!

Last weekend, Javad was invited to his first birthday party (for someone not related to him!) There were about 12 kids at the party (for a classmate) and the parents were fabulous. The boy's father was incredible. If the kids moved out to the patio, we moved Javad (and his chair) out to the patio. Inside for the reptile show...you know it, Javad moved inside too! Outside for cupcakes, out again...We moved in and out all day. Javad had a great time.

We are getting ready for his IEP meeting on friday. It will be a big one. We are planning out next year. I think the general plan is to have a hybrid schedule next year. Go to school in the morning (the general plan is to repeat kindergarten so we can get all of his technology in place), have lunch (well, sit with friends while they eat), then go to the resource room for an hour to work with PT/OT, speech. It will also give him time to take his brace off, get out of his chair and so on. I feel like putting time in his day for him to relax and rest will be so important as he gets older, so planning this time in now will be great!

I'll write more later! (promise)

Shannon

Computers, computers, computers

Javad is now, officially a computer geek! He loves the computer! Every day after school, he gets home and drives his chair straight to the computer. He loves it! He plays starfall.com every day.

Now he has a computer for school. I think the world is about to explode and he is all over it!

I am excited about what this computer means for him...

Getting on the wagon

Okay...I am trying to get back on the wagon. I seem to get motivated and then fall off the wagon. My commitment is to start writing every other day...

Javad is doing so many fabulous things. It has been an exciting time...tomorrow I will begin again.

Really...I promise!

Lily and the purple plastic purse

First I need to acknowledge that it has been forever since I blogged on this site. If you would have asked, I would not have thought so much time had passed. Apparently, it has.

I am back....making the commitment to get blogging again. So much is happening...I am in kindergarten, I love school, I am exploring my world by leaps and bounds...life is GOOD!!

Today I went to my first play. The tickets were a preset from Grami and Papa for my mom and I to go with my Aunt Megan and cousin Dakota. Well, the best laid plans...this morning, Auntie and cousin woke up very sick...Mommy and I crinkled our noses...Ewww...we were sorry that they were sick, but glad we weren't. We decided to go and see the play anyway and try to get their tickets exchanged to (hopefully) go tomorrow!

Mommy, Anne (one of our fav nurses), and I pakced up the car and drove to the theater. Sounds so high class, huh? We got there and to our seats. We were seeing "Lily and the purple plastic purse." IT was fun! It was put on by the Children's Theater. I almost made it to the end. I have been sick so I was pretty tired and we had to duck out the last 15 minutes. It was great anyway!

So, let me catch you up on the other great things going on. I started kindergarten this fall. I started the year at a charter school in our district, but transferred in January to the neighborhood school. The original school wasn't very wheelchair accessible, so it made it hard for me to get around. I have been at my new school for two weeks and I LOVE IT! I have a new assistant who I think is awesome (so does Anne and Deb, the nurses who go to school with me) and my new teacher is wonderful! It's been great!

I am getting a new speech board. I have it for a while right now to practice, but hopefully I will get it by the end of the school year.

Well, that's all I can think of right now! SOrry it has been so long...I will be writing now!

Javad

Javad and his big man glasses

Last friday, Javad got his very first pair of glasses. A few weeks ago, we got his eyes checked and found that his vision was VERY bad! We knew that his vision wasn't super, since he had a habit of bringing things about 3 inches in front of his eyes whenever he wants to see anything.

We were not really prepared for how bad his vision was. We have been told that his vision is 20/800 or 20/1000. Holy cow! The eye doctor says that he cannot even see the big E on the eye chart. Wow! I guess my little astigmatism shouldn't be complained about...Oh, he has that too!

So, as I was saying on friday he got his new glasses. What a difference they have made. He wears them all the time, from morning to night. He watched movies (and cartoons) from across the room. He waves down the hall, smiles when people come into the room. He loves riding in the car and is constantly pointing at things. It's great to watch. Javad's world has opened up to him. What a difference this will make in school...now that he can actually see the board! :)

I will post some pictures of him in his big man glasses very soon!

Javad continues to do well. Last friday we had his eyes checked. I don't know what his vision is...20/ really crummy! Needless to say, two pair of glasses have been ordered and a very cute boy (okay, cuter boy) will emerge next week. It will be interesting to see what he thinks, sice we can determine that he can't really see right now and he will be able to see when he gets the glasses!

Also, next week we are going to visit the MDA camp which Javad will be eligible to attend next year. Hopefully, we will post pictures of all these events by next week! We shall see!

Sweetness

Javad is so sweet. Today we stayed home together. He got a big boy haircut, lost another tooth, went to Home Depot with David and I, then came home to crash at 6:30! What a big boy. It's hard to believe that someone could be so loved!

My parents getaway

On wednesday, my parents are going on a much needed getaway. I will be spending my days with my fabulous nurses, and two nights with my grami and Auntie Megan....does it get any better than that?

Getting close to a new time!

My big brother, Adam, is graduating on Wednesday. It has been a long journey. Hard to believe that I was born just two yers before! He will be off to college and I will be starting kindy...I think that I have the better deal! What do you think?

Javad

IEP Meetings

Believe it or not, Javad is about to enter kindergarten. I can't believe that we have made it this far (well, I can, but you know what I mean!). We had his IEP meeting this past Tuesday and it was amazing and overwhelming. Nothing like having about 15 people from the district show up. Holy cow! The upshot is that Javad will be in a regular classroom, he will get a computer from th district. We will get a voice output for him, he will have an assistant and a nurse. AWESOME!

Things are going in the right direction!

Blog long overdue!

The little man thoroughly enjoyed our trip to Seattle with the highlight being the boat ride on Lake Union. You can see from the picture how excited he was to be a big boy on the boat.

So many things have happened since my last entry...

* Javad has finished preschool

* We celebrated my grampa, R'Dean's 90th birthday

All is well at our end...life is good...Javad is doing well!

Promise that it won't be this long until I update again!

Feelin' Groovy!

Javad has now gone through two cycles of strep...was out of school for a month, but is now going strong!

He is back in school and today, LOST HIS SECOND TOOTH!!!

I promise to write more soon! Life has been crazy...I almost have my head screwed on straight now!

Shannon

How many?

It just seems that Javad can't get a break. Over a week ago he had been showing signs that he may be getting sick. He was running a fever, was pale, and having a difficult time breathing. I had to go to school and pcik him up early, he scared them so much. I took Javad to the doctor on friday, we took a sputum sample and adjusted his vent settings. On Monday, he stll wasn't looking very well and we thought we may have to admit him. The sputum sample revealed that Javad had strep and a heavy growth of pseudomonas. We began treating wiht Cipro and tobramycin. Needless to say, almost a week later, he is not really better. Well, if we want to look at the little things, he is better. He is still having issues with running a fever, is on the vent all the time, but not on oxygen. He is pretty crabby and doesn't want anyone to touch him. Yesterday I took him in again and Dr. McQuestin says he probably has a virus on top of it all. Can the kids get a break?

The Journey to Boston

So, here we are in Boston. If you haven't been keeping up, go to my blog at (Driving on the highway.) I have come to Boston to attend The Joshua Frase Foundation Muscle Dream Team Gala. It has been an incredible event! Here's what I have learned:

1. The Joshua Frase Foundation has raised millions of dollars for research for Congenital Myopathies (of which Myotubular Myopathy is one!)

2. The other families that I met here (Connie Guinn, Benjamin's mom, Pat and Sarah Foye, Adam's parents, Scott and Betsy Grant, Kyle's parents, Maria Beasley, Logan's mom, Paul and Alison Frase, Joshua's parents, and many others) are fiercely committed to finding a cure for these myopathies.

3. Dr. Alan Beggs (see photo of lab above!) and his group of researchers are incredibly committed to the research they are doing. I have never met a finer group of scientists who are personally invested in finding a cure. Amazing since their interaction with these boys is only through photos, etc. They expressed frustration that science is not moving fast enough for them! Amazing!

4. The response I felt for the Buddy program and the other things I am doing with Javad's Place was incredible and affirming! I believe that the program is going to do great things!

It has been an amazing experience so far! I am already planning for next year, where I will have to suffer through being treated like a queen for a weekend...it's hard having doors opened for you and being called Ms. Guinn all weekend (that's another story all together!) Oh yeah..and sleeing on a cloud-like bed that has been turned down for you! Yep...need maids at home. That's on my new list of to-do!

Vacation

We have returned from our family vacation...for a total update, fly on over to my blog (www.drivingonthehighway.blogspot.com.) You'll have all the scoop and all the flavor! :)

Javad

Moving along!

Three weeks have moved along and I haven't posted. Javad is doing great! I am actively working on the Buddy Program for Javad's Place. I met a woman who works for the Muscular Dystrophy Association who is very interested in what I am looking to do with the Buddy Porgram. I am formulating the letter and hopefully get MDA on board. I am really excited about the possibility!

The Journey

We began this journey over three years ago. It seems that it has been so long ago but yet just yesterday. Over three years ago Javad was indicating that his leg was uncomfortable. We didn't know why he was acting like he was in pain. This went on for a week or so and then one day when he woke up, his leg was swollen. I came home from work and we took him to the hospital. After an x-ray, we were escorted to the ER. I was both shocked and stunned that Javad had a broken femur. How could this have happened? Let's see, jumping off the bed (that's out), running down the street (hmmm, no!), doing acrobatic moves (don't think so!). To this day, we have no idea how the femur actually broke, but what we did find out is that Javad's bones were less than 50% of normal size. The break was actually turned out to be godsend. We called Shriner's and told them that maybe Javad's bone issue may be a bit more pressing than his muscle issue. We got into the Metabolic Clinic and a prescription was given for a medication called Pamidronate (used for increasing bone density). This medication is given even two months by infusion. He gets the infusion for three days, four hours a day. The goal is to increase bone density.

So, we began on the regimen of infusions every few months and visits with Dr. Steiner (Metabolic doc) every year. DEXA scans before each appointment. With each scan. we were seeing an increase, slow but steady. I didn't care if we ever made it to "normal" but rather just wanted to hold him from getting worse and maintain. Any increase was welcome!

Yesterday we went for our yearly appointment at Shriner's. We had our routine DEXA scan and off to Dr. Steiner. Imagine my surprise when he told me that Javad's scan showed that since beginning three years ago that he has increased his bone density by 64%. He is now normal...You heard it NORMAL!!!

We have decided to continue the medication for one more year, get a standing program going, then give him a break for a couple of years. We will then do a three to four years on, two years off. We will continue this process until he is 20 when his bone density doesn't get any more.

It is really the first really good news that we've had in awhile! :)

Yeah, in one thing...Javad is normal!

Bear in the Big Blue House

Today Javad went back to school, after three weeks at home sick with RSV. I was glad to see him back in the saddle, I guess it went well. He was a little tired, falling asleep on the bus on the way home from school. When I got home from lacrosse practice, he was already in bed, watching Bear in the Big Blue House.

So one would think that watching BiBBH once or twice would be enought, right. Well, not Javad! He is continually in the once is good, ten times is better mode. He watches movie in an almost obsessive mode, over and over. He has watched Bear for over 2 hours, the same three episodes. If he could talk, he would be singing along at this point. I know taht I am almost singing along. This was the same as when we watched Finding Nemo. Once a day was not enough.

I guess we'll just put them in individual bags and set them outside the tank, so we can get free, back into the ocean. Okay, that's from Nemo...guess I have watched it once too many times!

On to tomorrow!

Playing

When I think of my children, I have many visuals that come to mind. I remember when Stesha was little, running across the playground getting ready to climb the "big toy." The expression on her face, flushed with excitement, ready to take on the world. I remember taking Simon to McDonalds so he could play in the play area, jumping in the ball pit, climbing through the tubes and down the slides. Memories like this brim to the surface when thinking of my children.

When I think of Javad, I wonder what those playful memories will include. It will not be filled with the same kind of activities that the other kids have been a part of. Javad loves to watch movies. He has absorbed the world thorugh his eyes. Last week one of his nurses, Deb, introduced us to a new preschool website. David (Javad's dad) has a new touch screen computer that Javad has been using to access this site. We can almost see the gears turning in his head. He is in love with this site.

Sometimes having a child with a disability gives a new perspective to playfulness and what playing really means. Is it watching the flush of excitment to do something new or the actual physical act of playing? Having Javad is similar to a constant search through uncharted waters. His playing is just beginning. This is yet another journey that I look forward to participating in!