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....

The Christmas Season

Today I helped the Oregon economy..what a helper! It has been an interesting beginning to the holiday season. First, We had to see a few of our children off to see their other parent. Stesha was supposed to leave on friday, but due to the massive windstorm we had on Thursday night, her flight was cancelled. Her dad rebooked her to leave on Saturday morning. Stesha's flight left at 6:20, then I had to run home so that David could take Simon for an 8:25 departure to Arizona to spend time with his mom. Don't forget to throw in icy roads to add to the equation! Stesha missed her connection in Denver due to a delay by the airlines, but ultimately got to her destination, as did Simon!

Anyway, it is now approaching the holiday season. My house is not decorated, the tree is finally straight (after a week and a half!) and I have done a littel shopping. What really is in my mind, is the gift we have in Javad this year (and for the last five years!) He has been a gift!

Update January 30..

First on my list for the new year....finish a single blog! :)

Happy 2007!

The love of School

So, many things have happened since the last time I wrote. Javad has started school, the other kids have started school, I have started school. That's a lot of school! :)

Javad loves school! He loves that the bus comes and picks him up at our house. He gets to load up in his chair and get lifted into the magical yellow chariot.

I think I am Persian now!

This weekend, Stesha and I flew down to California to my brother-in-law's wedding! It was a fantastic event. There was music and dancing all night long. Stesha and I got to play dress up and it was great! There was a lot of Persian being spoken and it almost felt like we were back home! (Okay, it's not like I have ever been there, but according to my brother-in-law, Mo, he felt like he had returned to the homeland!) We met new family members and found some lifetime friends. One thing I have discovered, is when you are married into a Persian family, you have a large extended family and you are welcomed with open arms! Next week, it's off to Math Camp for me!

An Anniversary of sorts

Today, David and I took a day trip to the beach. It was our seventh anniversary the 26th of June. It's hard to believe that it has been seven years. This is the rough time...we have been through so much crisis over the last five years, now we try to survive through the healthy times. Sometimes, believe it or not, that is more difficult than surviving through the sick times. It is weird that the kids aren't around. Simon just celebrated his 13th birthday yesterday and we weren't there. He is with his mother in Arizona. Adam and Stesha come home from the Mexico Mission Trip tomorrow, then Adam leaves on Tuesday. Our house soon becomes the rotating door for kids. It was noce to take a drive today. It was warm and beautiful outside. I took a nap on the way to Lincoln City, we ate at Mo's, a tradition for us, stopped at the candy striped store (for one 2 pieces of sea foam!!) and we chatted on the way home. We don't often have those times. So, now we are on to the next seven years...until then!

The Beginning- Part 2

So, the beginning (that first year) was pretty hairy. Javad was in and out of the hospital at least once a month. I couldn't go back to work, because we never knew when he would get sick again. He was so tiny and we were so clueless about how fragile he was. Now looking back, it's frightening how fragile he was and how easily we could have lost him. Ignorance is bliss, as the saying goes.

It became the joke that we knew all the residents and interns. We knew who was following who on the pediatric floor. Our doctor once told me that someone shouldn't really know that there is a rotation, so for us to know everyone was a bit frightening! That first year we were grateful that he never went to the PICU (Pediatric Intensive Care Unit). How would I know that later, the PICU would become our home for many months. We just went along say by day with two routines at home, "Javad in the hospital" routine and the "home" routine. I would sleep at the hospital and rarely go home. The kids would come visit in the hospital. We had a weird sort of reality going!

When Javad was about 3 months they diagnosed him with Congenital Myathenia Gravis. I pored over the web and any materials I could find and learned all I could about MG. Everyone seemed happy that he had a diagnosis and we marched along, feeling satisfied that he would get stronger, it was not a progressive disease and there were treatments available. He continued to have his ups and downs. We would spend time in the hospital and then at home. I always had a bag packed or could pack in an instant. We had the doctors on speed dial and could direct admit him. We were getting much better at predicting when he was going downhill and could be far more proactive. All were feeling satisfied about our progress at caring for Javad.

This went on until he was about 18 months. At a visit to Shriner's Hospital, our neurologist, Dr. Russman, told me that he wasn't convinved that Javad had CMG. Javad was on some medication, Mestinon, that is used to treat CMG, and he felt that we should be getting a better impact after the medication was given. He suggested that we have a muscle biopsy to confirm (or deny) that he indeed had CMG. Javad was getting tubes in his ears in October, so we arranged to have the two surgeries piggybacked and have the biopsy done as well. The results caught me a little off guard. In late October I got a phone callthat the biopsy results were in, Javad had been diagnosed with Centronuclear Myopathy, a very rare muscle disease affecting approximately 300 children. At that time I thought that there were more, but have since learned that there are very few. I rushed to the computer and looked CM up on the weband found it also called Myotubular Myopathy. What I found shocked me. Many of these children (mostly boys) rarely live to see their 2nd birthday. I was HORRIFIED! I called my father in tears (who handled it pretty well considering) and he came over immediately.

SInce I know my dad doesn't cope well with hysterical women, I pulled myself together by the time he got there and we talked. Okay, it says that many don't survive until their second birthday (his birthday was in one week) and Javad was doing pretty well, considering. I had been home alone (David and the kids were in Idaho at BibleQuizzing meet) since Javad had been fighting off a bug. Not really the ideal way to get this kind of information. Once my dad left, I searched the web for everything I could fine (thank God for the web!) and found an incredible support group (who I consult regularly to this day!)

So, fast forward...the next two years are a blur of continued hospitalizations, near fatal respiratory events, getting to know the doctors and nurses of the PICU on a personal level, and Javad making slow, but steady progress. So that brings us to the spring of 2005. Javad had a near fatal respiratory event and the hospital finally threw down the gauntlet, trach him or we could not be treated there any more. Whew! That was the big one! After a lot of tears, long talks with Dr. Nichols, calling and writing my friends in the Myotubular Support Group, I felt at peace. Javad had been struggling (and partially not breathing) for almost 15 minutes. There could have been brain damage or ultimately death! We were not against the trach as a principle, but rather that it was a first option. We had finally reached the end of the road. SO we had the trach placed last June, Javad was released in July, and, after one brief hospitalization in August, has been home ever since. Now really, we have a hospital in our house (nursing, ventilator, suction...two actually, and a variety of other things.) Let's face it, barring a major emergency, we are set.

So, now, here we begin, soon to celebrate almost one full year hospital free. Unbelieveable! So this is the beginning of our journey together. Check in regular and often!

Love thoroughly...live fully...forgive completely...peace always