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!

Finally!

Yes folks, there is a Santa Claus. Javad is back! He has finally kicked the RSV cold and is making progress. Today he was off the vent for 7 hours. Yahoo! Okay, so he fell asleep at 5 pm and just woke up (at 9:54)...yes folks, it could be a very long night!

I am so glad to see him feeling better. I was beginning to wonder. My niece has RSV right now too. She's only 7 months old. Now they have put her on Prednisone and she is having episodes of "roid rage." Ahhh, how I remember.

Keep Javad and the others that are fighting this nasty bug (Javad's dad is one of them.) in your thoughts.

Shannon

Remembering

Today we are remembering my mother, Javad's GramPatti, who passed away three years ago. To read more go to Driving on the Highway of Life. On a final note, it is my grandmother, Virginia's, birthday! Happy birthday!

Javad's Place Buddy Program

The Buddy Program is officially in the works. For those of you who aren't familiar with the Buddy Program being offered through Javad's Place, let me enlighten you! :)

Javad's Place is a non-profit that I am putting together to do a variety of things including Family Advocacy, Equipment Exchange, and the Buddy Program. The Buddy Program will be designed to pair up children and families, one with a disability and one without, to provide "play dates" for the children. As the parent of a child with a profound physical disability, I can honestly say that one of my biggest concerns is that Javad will not have many opportunities to have normal play activities. This has been the information I have received from other families as well. Children can become emotionally and physically isolated from their peers and the Buddy Program will start to break down those walls. In my perfect world, this program will help break down the walls and open up a clearing for acceptance and playfulness.

Families would receive training about the opposite family's child, and there would be an open discussion regarding concerns. The ideal situation would involve families seeing the value of this friendship for both themselves and their children, both short and long term.

I am going to get organizations on board to provide (what I hope will be) monthly events for participants. The more things that families can do together, the more comfortable that they will be with each other. I am going to start with one to two schools this next year, then look to expand the following year. I will be fundraising and looking to sponsor events. The project? Create a manual outlining the Buddy Project, giving the educational outcomes, creating the possibility of what it can bring to each school that implements it. I am also going to create the Kick-Off Event (I am hoping at the Portland Zoo) where there will be media coverage that will highlight the Program.

This is a new chapter in our lives, one that I am excited for.

Will this ever end?

Sometimes it is frustrating. As the parent of a child with a major disability, sometimes it's easy to get comfortable in your own space. When you are having a healthy run, it is easy to forget how frustrating it is when illness strikes.

Javad has been sick for two weeks. We are fairly sure that it is RSV, but I am getting concerned that he may be developing a secondary infection. Javad has missed two weeks of school and will most likely be out of commission for another week. Luckily, he doesn't have school this coming week.

I am reminded of how fragile life is these last few weeks. My friend has a daughter that has a form of dysautonomia. When she was young, she had difficulty speaking, walking, etc. Over the last few years, she has been developing well, growing, and generally getting stronger. her parents are in touch with her disease, even though there is nothing that can be done, in theory. Last week, she got sick. She got weaker and weaker until she was almost bed-bound. it is a rash reminder for all of us. I was talking to her dad and, he too, is reminded of how far we have come.

Another friend's son, who is a year younger Javad, spent the night in the PICU. His trach came out and he was without oxygen for up to 3 minutes. Although he is doing better, again, it's a frightening reminder of where things could go.

I am grateful that Javad is doing okay, even sick. Oddly, it is hard to remember when this was our life and we were living between illnesses. Now, we are just living.

I guess the first step is just making it through this particular illness.

Nothing New!

What else is there to say?

Still sick

Okay, so maybe this is becoming the continuous post. Javad is still sick. I think the other night when we went to grami and papa's, it may have been a bit much for him...I guess I hope that the next entry will be better news!

Survivor

Well, I think that we are making progress. Although today Javad still didn't get to go to school today, he did get to have preschool at home, be off the vent for more than on 45 minute period, play, and start to be a boy again. He is still not feeling totally up to snuff, but he is finally moving in the right direction.

The best part? We all went to Grami and Papa's to watch the opening night of Survivor: Fiji.

Another Blah day!

Well, it has been another sick day! Not much to write. Javad's day consisted of sitting up in his chair (which he loved!) being off the vent for 45 minutes (which he also loved) and playing on his side (again, loved it!). Unfortunately, he is still sick. Those activies wiped him out and he fell asleep at 5:30 pm (and is still sleeping). I guess that's his day...not real exciting, but hopefully better tomorrow!

A new day and clearly feeling better!

so today is C-day (cold day) + 5 that Javad has been feeling sick. I think that he is finally beginning to turn around and get onto the mend. Today he was not running a fever (yeah!), he was off the vent for 45 minutes (a small start, but at least a start!), and sat up in his chair for an hour!

Sometimes it is hard to remember how important small steps are in Javad's life. It brings back memories. When Javad as little we relished in every small step. It seems almost weird how comfortable we are with how well Javad is doing, that sometimes we forget how far we have come, how fragile he was when he was young.

A cold used to throw us into a whirl, now we just give tylenol and ibuprofen and move forward.

Five years and light years ahead....

Another day, same cold!

BEWARE, IF TALK ABOUT SNOT BOTHERS YOU...DO NOT READ ANY FARTHER!

Well, there Javad sits (or rather lays) on the big bed, still sick. I am sure that in his mind (which he would so love to speak!) he is screaming, "Okay, enough of the movies, books, and lying around. Let's do SOMETHING!!" I guess the good news is that today there is a lot less stuff running out of all of his facial orafices (again, I know, TMI, but you are choosing to read this!) Overall, Javad is feeling better. He is running a low grade fever, is on the vent all the time (a huge bummer, but a necessary evil), and has watched the first five minutes and final credits of "Finding Nemo" probably 50 times today (Chalk that up to being up to push the fast forward button on the DVD player!)

Overall, I think we are on the upswing of this cold. Unfortunately, Javad won't go to school tomorrow, but he may be ready by Thursday. We'll see how it all goes....every day, less snot...That's our Motto!

Football or Movies? You pick..

Today, the day that many people revere at one of the greatest days, Superbowl Sunday, Javad spent the day in bed. He has a cold, he is feeling crummy, he has stuff coming from every orafice of his face. I know, too much information, but alas, it is true. So, what do you do when you are five, have a bad cold, and its Superbowl Sunday? Watch movies! Javad got to see quite the plethora of movies choices...he started ith his all time favorite, Monsters Inc, moved on to Cars, then Brother Bear, and Lion King 1 1/2. I know you are thinking, can it get better? Well, to finish it off, he watched Doogal. Yes folks that's about 7 hours of movies, but honestly what better is there to do when you have loads of snot running from your face? You can drown in snot or watch movies! I know that your choice would be the same as Javad....bring on the Tylenol and press play!

Javad's and his impact

Javad is doing remarkably well. Sometimes I wonder if I am too comfortable with how he is doing. He is doing so well. He has been spending more and more time off the vent. It is really amazing. Adam has just completed the website for Javad's Place. I am really excited about this new organization. I am going to be working with my friend, Lee, to get this non-profit off the ground. Everyone who I have talked to is really excited about the possibilities that may come from this.

I have been involved with Landmark Education and I have a class that is coming up, the Self Expression and Leadership Program. In this course, you choose and project and help it get off the ground. I am really excited about getting Javad's Place off the ground. It is a dream that I have. I have felt that having Javad was for a purpose. I want to help others, give Javad a voice, make a difference. Javad's Place will start here, but I want it to make an impact that makes a ripple that goes into a wave.

This is our life, one that I want to look back on and be proud. I want my children to carry on Javad's Place, have it make a difference.

Now we start!

Total Exhaustion

What can I say? I guess I'm not getting any younger! On New Year's Eve, I stayed up until 3:30 playing the ultimate game of trivial pursuit where NO ONE WON! Can you believe it? I was in the inner circle for over 2 hours and every time I got to the middle (again!) they would ask me a "blue" question, which has to do with sports. Now, for those who know me. I love sports. This was the 90's version of the trivial pursuit game when I REALLY watched sports. Why was it that I could answer all the blue questions that came up for everyone else, but all my questions had to do with some obscure sports people that I am sure that no one has heard of! How frustrating!

Needless to say, I am still recovering....