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Monday January 21, 2007 10:40 AM PST
Who knew that a simple dinner could be so refreshing? Tonight I met April, Josh's mom, at McCormick and Schmick. We talked for three hours, ate some great food, and, at least from my perspective, connected. Children who have life threatening diseases walk a similar path, their families following along, praying, hoping, and wondering. You constantly wonder if you are making the right decision regarding their emotional health and their physical health. You hope that, somewhere in the whirlwind of the whole deal, you are keeping your head above water and somehow holding both yourself and your family together.
Thanks April, for the reprieve, the confirmation that I am not going crazy, and most of all, for extending your hand out in friendship.
Shannon
Tuesday, January 16, 2007 6:12 pm pst
This morning we woke up to a winter wonderland. Overnight (or early in the morning) it began snowing. We woke up to a white yard and near whiteout conditions. Now, if you are from somewhere in the east or where you get your snow in feet, our 4 inches will be nothing, but for Oregon it is rare. We have had below freezing conditions for the last few days, so the snow is on top of ice and is now being packed into ice again. There have been sledding accidents and cars looking like they are on a bumper car ride. Scary. Luckily, my family was at home in our warm house, safe and sound!
On days like today, I am reminded a bit of how things with Javad are different. If Javad was able bodied, I would be grabbing him out of bed so we could go outside and play in the cold, white goodness. Picture snow angels and snowmen...that's what I see in my mind, but may never see with my eyes. Javad and I stayed in bed, snuggling. I realize that I would not really have that gift if he was able bodied, but sometimes I like to imagine!
I know that I shouldn't complain. Javad is here. I am not at risk of losing him. A young boy Baby Donovan is fighting his last fight. His angel wings are starting to grow and soon he will be greeted by the angels in heaven. His mother has been told he may not make it through the weekend. I cannot imagine...
Having a child who is chronically ill is sometimes like living in a place where there is always limited visibility. You continue on the road, hoping the you are still on the correct path, but you never really know what is up ahead. Just like driving in a whiteout, you pray.
Please pray for Baby Donovan and his family. Pray for clearing so they will see the light from heaven coming to carry their son home.
hold those you love tightly, remind those around you that you care.
Shannon
Friday, January 12, 2007 10:47 am pst
So, I was sitting here reflecting on this past year and the year ahead and wrote, what I thought was an insightful reflective piece...unfortunately, it was eaten by cyberspace. So, I can approach this in two ways, be annoyed and irritated, or realize that the reflective piece that I wrote may not have been the one I was supposed to write.
I have decided that I am lucky...having Javad enter my life was definitely one of the best things that has ever happened to me and my life.
This is a new year. Some would think that it's time to sit down and make a list of resolutions, but long ago, I realize that resolutions are often just promises to ourselves that we don't keep. I am not making resolutions.
Sometimes I wonder what people see from the outside…a woman with four children, one with severe disabilities. “How does she manage?” as if I have a choice to not manage. I get up, go to work, come home. I love my children and I love my job!
One of the things I have come to notice is that I do not take time for myself. I feel guilty if I do, feeling that I should be coming straight home from work, letting my husband have free time. Don’t get me wrong, my husband, David, is awesome. He takes care of Javad and loves spending time with him. I am lucky, but I still feel guilty. I realize that I choose to feel guilty, but I still have to honor that I feel it.
I started a book club in the fall. We have only met once (we read The Memory Keepers Daughter…it was awesome!), but are on a path to meeting monthly. This is something I am doing for me, a chance to get together with friends, read a book once a month. I miss reading, writing, spending time with friends.
Five years ago when Javad was born, I really felt that I was supposed to do something with the experience. I have talked about starting a non-profit. This fall, our oldest son, Adam, designed a website for Javad's Place for his senior project. It is great and I am really proud of him. The next step is forming the non-profit with the help of my friend, Lee. This is a step in a new direction for me. A step towards the future.
I have applied to be part of the Masters Program in Math. Starting in the spring, I am officially in the program. This, too, is part of the next step of my life.
I don’t know where this year will take me or take my family, but I do know a few things. Adam is heading out to college in the fall. Stesha has decided to stay at home next year and finish her Associates Degree, then transfer to a 4-year the next year. Simon will finish middle school and start high school in the fall. Javad will start Kindergarten in the fall.
Time marches forward and I am excited to see what it brings. This is a year of no resolutions, but rather a year of possibilities.
“Be the change you want to see in the world.” ~Ghandi
Love deeply, live a life that is full of possibilities
Shannon
Monday, January 8, 2007 1:45 PM PST
Finally, school is coming back! I haven't been since before Christmas Break! Tomoorw I get to go back and see my friends. I have been feeling okay, a little tired, but I think that's because of a change in schedule. Nothing....
All the big kids are in school....
You might want to check out my mom's new project...Javad's Place. It is still under construction, so keep checking back.
Talk to you soon!
Javad
Monday, January 1, 2007 7:13 PST
Today we welcome in a New Year. It seems hard to believe that the year has passed so quickly. It has been filled with many ups and downs.
Javad's year has been fantastic overall. He started preschool in the summer and has loved every day he has been there. We look forward to kindergarten next year. He is currently on a waiting list for a charter school in the area. His cousin is in the kindergarten class for next year so that would be neat for them to go together!
Javad was healthy for most of the year. He did a quick visit to Emanuel for a week, but other than that he has been home for 15 months! He has grown and overall looks great!
The other kids are doing well. We have been blessed.
Unfortunately this year has been laden with the loss of many internet friends, children that have lost their battles. We think about their families during this time. We also think of the Kim family who lost their father, this holiday season as well as the years to come will be difficult without him. Also in our prayers are the families of the climbers on Mt. Hood. There is no easy way to deal with the loss of a loved one.
AS we go into this new year, there is a year of new possibilities. The possibility of health, the possibility of love, the possibility of growth. I am looking forward to seeing where the year takes us. Where we lead...
We will look to the future, leaving the past behind us...
Together we journey, friends....
Monday, December 25, 2006
Have a wonderful holiday!!!
Love, live, pray for lasting peace!
Javad
Tuesday, December 12, 2006 3:13 PM PST
Hello all!
I have been letting my mom write for some time, but I have decided to take back the computer and let it roll!
Last week I was at my second favorite place, the PICU at Emanuel. I must tell you, after almost 15 months of being home, being in the eternal daylight of the PICU was weird! All these people kept coming in to my room saying hello and using my name like they knew me. Who were those people anyway? My mom talked to them, so they must be someone good, but I felt a little odd having them be so friendly with me.
I felt really sick. I didn't want to move or smile or anything. My mom had to go to work during the day which just bummed me out more. Lynn, from Child Life, came into my room and made it beautiful with colored lights, but that only stayed up for one day!
Overall, I am glad to be home!!! I am feeling pretty good since I have been back. Okay, maybe mommy and daddy didn't really enjoy the night when I went to bed at 5am, but I thought it was fun!
I am still on the vent more that usual, but am coming off for more than an hour at a time. I attribute this amazing bounce back to my year at home!
As the holidays come up, love deeply, hug firmly, and laugh until you cry!
Lots of love!
Javad
Saturday, December 9, 2006 11:05 AM PST
We are home!
Yesterday, after 8 days in the PICU, we arrived at the homestead! Yeah! Javad had a pneumonia in his lower right lung.
Javad is doing well. He is on the vent full time right now, but he is off oxygen.
Please keep our friend Josh is your thoughts, he is battling pneumonia as well.
Shannon
Tuesday, December 5, 2006 8:59 AM PST
Javad has been inpatient since last Thursday night. We took him into the ER. He had been pretty sick since Tuesday night. He was running a fever (unusual for him) and generally feeling crummy!
They admitted him with a right lower lobe pneumonia. Yesterday we tried to put him onto the home vent to take him home today, but it was unsuccessful. Hopefully he'll do okay today and we will come home tomorrow.
Please pray for Baby Donovan (in/babydonovan). His last transplant failed and they are looking for a miracle!
Shannon
Sunday, November 26, 2006 12:18 AM PST
Hello all!
Today was a monumental day in the life of Javad...I know you are asking, what could this be?
Today, our entire family (all of us, my sister and her family, and my mom) all went to the movies. So that may not seem like much, but Javad has never been to the movies. Well, to be technical he went when he was a newborn and we were blissfully naive about how sick he was...)
So today, we loaded everyone up in the car and went to see "Happy Feet." It was fun, we survived our first movie, we know how to do it better next time (we know where to sit, know what theater is the best, and so on!)
So this has been a year of being thankful...
First School Day!
First Birthday Party!
First Movie!
What more is to come? Who knows!
Kiss those you love, hold those near to you, remember to love, and look at a life full of possibility!
Shannon
Monday, November 20, 2006 9:26 PM PST
Things to be thankful for:
1. Javad having a fairly healthy fall.
2. Javad attending preschool and LOVING it!
3. Stesha and Adam making it through their senior year!
4. Simon doing great in 8th grade.
5. David continuing to love his job!
6. Shannon enjoying her teaching and moving toward a Masters in Math.
7. Family nearby
8. Friends that have supported us through the last five years!
Much love and Happy thanksgiving!
Shannon, David, Adam, Simon, Stesha, and Javad
Friday, November 17, 2006 10:22 PM PST
Our entire family is battling some kind of cold...luckily Javad is pulling out of it pretty quick and has been able to go to school this week!
Please keep us in your thoughts that we all get well soon!
Shannon
Tuesday, October 31, 2006 8:35 PM PST
Tonight when my husband came home from work, he said, "Remember five years ago?"
Five years ago, that seems so far away. Five years ago, David and I were getting ready. We knew that we were scheduled for a C-section on the 1st. I took Stesha trick or treating in all my hugeness and then packed to be at the hospital in the morning.
We reviewed all the plans, let Stesha be the first to hold the baby so she felt a part of things, make sure I get to hold the baby before it is taken to the nursery and they give me painkillers. I was sure that things would be perfect. My parents were going to be there, Stesha was going to be there and David by my side. How naive we both were...
We got up in the morning, ready for the exciting day. We got to the hospital..it's weird because I remember it as if it happened yesterday. I was the lucky winner of some guy that seemed not to be able to put an IV in. I kept telling him to put the IV in my hand (I have HUGE veins there!) and he insisted that he could put it somewhere else. After four pokes, you guessed it, in my hand! Everything seemed to be going well. I was nervous but excited all at once!
Dr. Hudson came in and we talked, Dr. Polo came in...we were ready! We went into the surgery room and I got prepped for surgery.
The surgery began and I swear that they didn't give me enough anethesia. I kept saying that I felt it (no, it's just pressure!). They finally said that we had a boy (what, I was sure that it was a girl!), but no cry, nothing. After what seemed like an eternity (I am sure that it was only a little bit), I asked David why the baby wasn't crying, was he ok? David told me that they were giving the baby some oxygen.
Still no crying...finally they said that they were taking Javad to the level 2 nursery to give him some extra support. I still had no idea. I asked to hold him (I am so glad since I would not hold him again for over 24 hours). They let me hold him for a brief moment then whisked him away.
The entire first day David went back and forth from the nursey to me. My parents were there. That night, I finally went to see him. I knew there was something wrong from the moment I saw him. He was so tiny, so frail. He was lying there under an oxygen hood, pink and sweating. I held his finger, cried, and prayed, something I had not done for some time.
After 24 hours they sent Javad to Emanuel Children's Hospital, where they thought he could be more effectively taken care of. This would be our home for the next three weeks. No diagnosis...taking it one day at a time!
Five years ago...it seems like it was yesterday...it seems like a life time ago!
Happy Birthday sweet boy! I love you!!!
Sunday, October 29, 2006 7:40 PM PST
Well, yesterday's party was a HUGE success. Ten kids (yes, you read that correctly, ten kids!) showed up for Javad's party ready to play. We tossed the beanbag a few times and everyone got prizes. Then the did the pinata. Okay, first of all, I don't know who made this pinata, but it was a pumkin face (it was a halloween themed party) that must have beem make of concrete. I "helped" Javad hit the pinata, my dad "helped" my niece hit the pinata, my dad "helped" Javad hit the pinata (oh, meanwhile, adults are "helping" other kids hit the pinata as well!) There was no movement in the pinata...Finally, I ripped open the backside to give it some help and then more adults "helped" more kids hit the pinata. Finally, we just turned it over so the candy fell out! PROBLEM SOLVED!!
The next item on the agenda was painting pumpkins. I must say that I haven't seem that many grey pumpkins in my life, but the kids had a great time! :)
After cleaning up, we had special cupcakes made by Stesha, Javad's older sister. After opening presents (which Javad enjoyed), the kids went outside to play "What time is it Mr. Fox?"
A busy day indeed for Javad, who was very tired! He slept in this morning until 10:00! I would say that is one sleepy man!
Pictures to follow soon!
Shannon- mom to almost 5 year old Javad (November 1)
Tuesday, October 24, 2006 9:50 PDT
Sometimes you read something that reminds you that we are not on the path alone...I go to this wonderful story from :Joshua's Page who got it from Angel Amazing Jacob's page!
THE SPOONS
"A holy man was having a conversation with the Lord one day and said, "Lord, I would like to know what Heaven and Hell are like.
"The Lord led the holy man to two doors. He opened one of the doors and the holy man looked in. In the middle of the room was a large round table. In the middle of the table was a large pot of stew which smelled delicious and made the holy man's mouth water.
The people sitting around the table were thin and sickly. They appeared to be famished. They were holding spoons with very long handles that were strapped to their arms and each found it possible to reach into the pot of stew and take a spoonful, but because the handle was longer than their arms, they could not get the spoons back into their mouths. The holy man shuddered at the sight of their misery and suffering. The Lord said, "You have seen Hell."
They went to the next room and opened the door. It was exactly the same as the first one. There was the large round table with the large pot of stew which made the holy man's mouth water. The people were equipped with the same long-handled spoons, but here the people were well nourished and plump, laughing and talking.
The holy man said, "I don't understand.
"It is simple" said the Lord, "it requires but one skill. You see, they have learned to feed each other. While the greedy think only of themselves. "A friend is someone who reaches for your hand, and touches your heart." "People say true friends must always hold hands, but true friends don't need to hold hands because they know the other hand will always be there...."
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Thank you for all your support over the years!
Shannon and gang
Saturday, OCtober 22, 2006 9:26 PM PDT
The countdown begins...only 6 more days until Javad's official first kid birthday party. I am so excited! Okay, it is entirely possible that I am the most excited... Javad doesn't get it! This could be because he has no idea what he is up for!
So, on saturday, we will have a Halloween themed party with (hopefully) a few of his firends from school! It will be neat! We will do a pinata, paint pumpkins, and do a bean bag toss! Cupcakes to follow! I will put pictures up as soon as I get them!
PS Congratulations to Robert and Jacqueline...they are having a girl!!!
Shannon
Monday, October 16, 2006 11:00 PM PDT
Dear Friends,
Things are going well on our home front. Javad has been doing really well. He had a bit of a rough patch (some random cold that knowcked him down a few pegs), but is now on the road to wild boy-dom! I can't believe that he is almost 5 years old! Only a few more weeks. This upcoming weekend brings back the memories of his "diagnosis weekend" three (not-sp-short) years ago. I remember that Javad was not feeling well and David had taken the kids to Idaho for a Bible Quiz meet. I was home alone with a sick child and no nurse (because we were supposed to be gone!) One of Javad's plethora of doctors called to inform me that they had gotten the muscle biopsy results and that he had Centronuclear Myopathy. I was looking things up on the web at the same time that she was talking and was HORRIFIED! Everything I read said that he was going to die or that he would not survive past two years. I was talking to the doctor, reading the web (okay, so maybe the increase in technology isn't always the best!) and trying to not flip out on the phone! (not an easy task!) I hung up with the doctor and called my parents house. My father answered the phone and I broke down crying (nearly hysterics) saying that the doctor had called and that everything said that Javad was going to die. Now, for those who know my father, emotive women are not his strong suit. God love him, he was given only emotive women in his life, but again...not his strong suit!
Needless to say, he told me he was coming right over (at which time I realized that I needed to pull myself together or this wasw not going to go well) and by the time he got to my house (less that 10 minutes!) I was somewhat together! We looked over the literature (which we realized was really old and outdated, talked about how Javad's birthday was less than two weeks away, thus he was going to survive past two and then looked at how this change in diagnosis might change our lives (not at all!). Once my dad left, I was calm and rational enough to talk to David later that night.
SO here we are three years later, planning Javad's first "kid" party. He has continued to get stronger, definitely got cuter, and I connected with the greatest group of families on the web. What a blesing!
Overall, I can't imagine our life any differently and I am not sure that I'd want to! We go the road, ups and downs. We have met great people along the way!
If you are reading this, you are one of those people! your support has been invaluable.
Thank you!
Shannon
Thursday, September 28, 2006 0:36 AM CDT
Well, it seems that I have spoken too soon...Some kind of virus (plus an extra dose of pseudomonas for Javad) has descended upon our house. Last saturday Javad went to Dakota's 5th birthday party. (Dakota is his cousin.) It was an outdoor party that involved egg races, petting the cows (yes, my parents live on a farm) and generally hanging out with the kids and having fun. He had a blast! My sister pushed him during the egg relay. He held the egg and smiled the entire way!
My dad was so surprised at how great he was and how he interacted with the other kids. It was great to see Javad outdoors (which he loves) and see how he has evolved when with other kids his age!
Well, needless to say, by saturday evening, Javad was laid up, on the vent with stiff poring from every orafice in his head (how is that possible?). It always amazes me hoe fast he can turn. Saturday night was one of the worst he has had in a year. I wasn't sure we weren't going to the ER. I guess the thing that "saved" him is that I couldn't get him stable enough to go for over an hour. Finally, I got him saturating at 90-91, had him on the vent and o2. We made it through the night and called the doctor in the morning.
So here we are, on Wednesday with a boy who looks okay one part of the day, plummets down another part of the day. Anne, our nurse, talked to the doctor about five times today trying to come up with a plan. It seems that one option was to take him to the ER which would probably result in him being admitted. Seeing as how I am still doing a happy dance that he hasn't been admitted in over a year, I was not jumping for joy at that plan. A few more treatments later and Javad seemed to be in a better place.
So, in the end, we are home, Javad is still recovering, David has taken Nyquil to try to make his symptoms go away, I took Dayquil (no more Nyquil) to make my symptoms go away, and all is well!
So, other than that, things are going pretty smoothly at our house!
Take care!
Shannon
Friday, September 22, 2006 10:44 AM PDT
Another week down.
Javad attended school both Tuesday and Thursday. He is hilarious. Whenever he sees a bus on the street, he gets a big grin on his face. He LOVES school. He continues to do great! The only glitch in the system came on Monday when we were playing and somehow his leg got hurt. It is difficult because he has osteoporosis which makes his bones very fragile. I took him to the doctor yesterday and it was almost the comedy of errors.
I called the doctors office to get an xray. I suggested that he get the xray before seeing the doctor and the triage nurse told me that he would need to see the doctor first. Although I thought different, we waited (for an hour)and when we finally saw the doctor (the husband of Javad's doctor) he told me that Javad's leg didn't seem urgent, but I should probably get it x-rayed. (Um, duh! That's why we're here!) Well, afrter everyone being annoyed, including the doctor, we finally decided to put a spint on Javad's leg. We're going to leave it on for about a week, then reasses whether or not to xray!
All other things in our household are in a constant state of controlled chaos. Adam is in full swing in his senior year. He is a busy young man. He is on a bunch of committees, taking a slew of difficult classes, and running cross country. Soon I will be dumping a ton of scholarship applications on his lap. Stesha is beginning her senior year next week. She will be juggling a busy season of college classes, lacrosse, working, and drivers ed. She too will have a slew of scholarship applications on her lap. Simon is in the 8th grade. He is involved in band, taking algebra, and as social as ever!
I was talking to the kids and reminding them that this would be my third time in high school! :) This year is going exceptionally well. A change in my teaching method has resulted in the kids really latching onto the knowledge. I am hoping that they can see that math really does apply to their life!
Please continue to keep our friends in your prayers...
Shannon
Thursday, September 14, 2006 1 1:09 AM PDT
Well, this week has been a red letter week. On Tuesday, Javad started pre-school. Yep, the big yellow bus came to the house, Javad (in his chair) and his mammoth school bag (a suitcase with all his equipment that looks like a backpack...sure no one will notice!) were loaded up onto the lift and away he went. Tuesday was a bit rough, muggy and warm. Javad was on the vent for one hour during school. Ultimately, our goal is no vent at school.
Thursday, everything went smoothly. Bus showed up on time, Javad was loaded up, and off they went. By "they", I mean that Javad and Deb (his nurse) were on their way. Today, javad was on the vent on the nus on the way to school, but at school...NO VENT!!! On the way home, he also was on the vent.
Deb said he had a great time. He went down the slide, interacted with other kids. etc. THe other kids treat him like one of their own. YEAH!!!
I think we are off to a fantastic start. Now, if we could just get off the prenisone...
Shannon- a very proud mother!
Monday, September 11, 2006 8:59 PM PDT
Tomorrow is Javad's first day of school. He got to practice over the summer and go for a week and a half, but tomorrow is the first real day! I am soo excited. Javad is excited about the bus ride. They have moved his classroom to a new school, so he will have about a 25 minute bus ride. He'll love that!
Two seniors, one eight grader, on pre-schooler...do you ever feel like life is repreating itself?
Shannon
Sunday, September 3, 2006 8:53 PDT
Please keep the newest angel, Cameron's family in your prayers. After many years of fighting leukemia, transplants, remission, and relapse, the leukemia has taken his body, but not his soul and spirit. He will be 14 years old forever in heaven.
This is Shannon again. I realize by looking at Javad's site, that he has not been keeping up like he should, so I guess I will be stepping in for a bit. He is four after all, and sometimes his priorities are not to keep others informed!
Javad is doing well. We have been having weather that is hot (then cold, then hot!), so his allergies are flaring up. THis has resulted in tons of sticky secretions, extra sleeping, and more vent time. We are confident that he will be doing well and going to school in a few weeks. I drove by the school site today to get a lay of the land. It is a bit of a drive, but it's the location that they are putting the ESD classroom for next year. Javad will be in a mixed classroom with "like peers." I spoke with the his teacher this week as well, and it was confirmed that Javad is the most complex needs case that they have had. I am hoping that being around other students will ancourage him to start communicating. Ideally, we would like him to start talking, but sign again would be fine. He has refused to do anything. Hmmm...can you say four years old?
As I stated earlier, we are planning on having a one-year hospital free party. I am hoping to have it this month. My niece is being dedicated, my other niece has a birthday...We'll see how that works out!
Please continue to keep Javad in your thoughts. Although we are grateful for how far he has come, we really are praying for him to talk. Hearing that sweet voice will be music to my heart!
Create a life worth living..love those around you, make every day count!
Sunday, August 27, 2006 9:45 PDT
This is Shannon. Well, we have a celebration in order. We are approaching the date that marks one year hospital free. Can you believe it? One entire year! Last summer, we had to make the decision to put a trach in Javad. It was one of the most grueling decisions we have ever had to make. We weren't really given a choice. It was either a trach or possibly his life. Although it was not what we envisioned for Javad, we have never looked back. I have never looked back. Many have looked and said," Isn't is great that he's been well this year?" Let's be realistic, he has not been well. We have battled pneumonia, pseudomonas (all the time), Streptotrophomona...it has been an up and down hill battle. Last year, by putting in the trach, we opened a door. We now have the hospital at our house. We have suction (two), vent, oxygen. We have nurses every day to give Javad all their attention. Really, we have more than they can offer us, well, except a doctor at the house. Don't get me wrong. We are celebrating this year. Javad has grown (almost 15 pounds and almost 7 inches) and is happy. We feel blessed. Please celebrate with us! It has been a great year!
Friday, August 25, 2006 9:15 PDT
Well, this week has been interesting. As I said earlier in the week, I am currently fighting two respiratory bugs, then on Wednesday, my ear started draining. Yep, an ear infection as well! Who knew! Mommy was almost beside herself, but I got some more anitbiotics, some powerful eardrops, and today I am feeling much better!
This weekend Daddy is hanging out with Adam at a friends lake house and Simon is hiking with the youth group. Stesha is working most of the time, so, it's me and Mommy! Yeah! My favorite!
Next week, Mommy goes back to work, so I need to get in all the kisses that I can!
Talk to you soon!
Javad
Monday, August 21, 2006 8:51 PM PDT
Well, another round of being sick...I just can't seem to shake this. I have started on tobramycin again to treat pseudomonas. This time I will get it for a month. I feel ok, just have no stamina. Tomorrow, I am going to see Dr. Nichols again and get a chest x-ray to make sure that my lungs look okay. I went to the cardiologist last week and got a pretty clean bill of health. They are trying to figure out why my heartrate is high. Maybe I have a low grade infection...who knows!
I just want to get well.
Please continue to keep my friends, Josh and Robert in your thoughts!
Javad
Thursday, August 17, 2006 10:55 AM PDT
Well, time is flying by. The summer is coming to an end. Where did the time go? Tonight my brothers came home from their summer away. I was soooo happy to see them! Things have been going pretty well for me. I am (finally) getting better. My mom and dad want me to get well! I have a few weeks to get fully well, then school starts for me! Yipee! I love school!
Tomorrow I go to see a cardiologist to get a check up. I have been having high heart rate for no reason, so we are going to get it checked out. I am sure that everything is great, but I think I will be getting it checked once a year just to be safe!
On another note, please keep my friend Josh (or/josh) in your prayers. Check out his page and leave him a note!
Javad
PS HAPPY BIRTHDAY AUNTIE MEGAN!!!
Wednesday, August 9, 2006 3:01 PM PDT
Well, the end of my mom's three week math camp is coming to an end. She will be finished and home by friday. Stesha has also been gone, at camp, and she will be home by saturday. Adam and Simon will be home by next week and my familiy will be all together again!
I have still been sick. More pseudomonas, more antibiotics. It's a bummer...I am ready to be well!
I did finish school! That was great! At least I got through two weeks of school and am ready and raring to go in the fall!
Well, I am going to make it short. I have been tired.
Talk to you soon!
Javad
Saturday, July 29, 2006 9:38 PM PDT
Well, its been a busy week. Mommy was awake this week at "Math Camp." For those of you who don't know, my mom is a high school math camp. She is part of a four-year grant that means she goes to Oregon State University to take nine graduate credits in math and leadership. It's really good for her, but for me, that means she's gone during the week and home on the weekends for three weeks.
That means for me it's "all Javad, all the time!" (Okay, well, Stesha is home too, but she's a teenager so she's out doing things all the time!) Daddy and I are sleeping together, holding hands! I get to sleep in the big bed! It's great!
I really miss Mommy though! I was so glad to see her on Friday afternoon when she got home, I almost wriggled out of Daddy's arms. So now Mommy and I are sleeping together in the big bed! It's great!
This week was also great cause I got to go to school. As you may remember I was really sick, but school was great! I love riding the bus and playing with the other kids. There was a boy that held my hand and read a book to me. I played cars with the guys! I tired to kiss a girl a girl during circle time! Yep, Mac Javaddy in the house!
I guess I'll figure out some time that everyone isn't put on the earth to kiss me, but hey, a boy has to try!
So, keep my mom in your thoughts. She gets really tired, does lots of homework, and did I say she gets tired?
Please keep my friend, Robert (or/robert) in your prayers. He hurt his leg really bad and it looks really yucky! Pray for no infection! Also, keep little Asher in your thoughts...
Talk to you soon!
Javad
Saturday, July 22, 2006 8:35 PM PDT
Well, it's official. I still have pseudomonas! I have spent 14 days on Cipro and am on it for another 10 days. This bug just won't leave! I was supposed to go to school two weeks ago and, of course, got sick the day before I was supposed to go. My Daddy says that I am a "school skipper." I think I am slowly getting on the rebound so maybe I'll be able to go to school on Tuesday! I am going to hang out at home on Monday to try to get to full recovery! That way I can get on the bus and GO TO SCHOOL!!!
My Mommy leave tomorrow for her three week "math camp." I know that sounds like load of fun for all other people, but my mom is a math teacher after all! It's an odd sort of breed...math teachers!
Well, please continue to keep my friends Oliver, Sean, Robert, Jaxon, Kaitlyn, and Joshua in your prayers!
Talk to you soon!
Javad
Wednesday, July 12, 2006 10:13 PM PDT
Hello, This is Shannon. I thought I would impart some knowledge that Javad has shown me...If you pull all the Kleenex out of the box (one sheet at a time) it is virtually impossible to shove them all back into the box. If, by some chance, you do get them back into the box, if you try to pull out one sheet, you will get large clumps of a mystery amount of kleenex. Memo to self...do not leave an (almost) five year old alone with a full kleenex box!
Tuesday July 11, 2006 9:46PM
Well, I must admit, Mommy talking about having a "One Year Hospital Free" Party is pretty cool, but alas, I needed to give everyone a run for their money.
I have pneumonia, yes, I have grown my favorite bug, pseudomonas, into a full blown pneumonia! Today I went to see my favorite pulmonologist, Dr. Nichols, and he tip toed around the idea that I should maybe be admitted. (Mommy said no.) I know that Mommy is concerned and wants me to be home. The agreement was made that if I am not making greater strides in getting better, then the discussion will have to be opened again!
Making it this long without going to the hospital is a miracle. Please pray that I make it to my "One year party!"
Javad
Saturday July 1, 2006
HAPPY 13th BIRTHDAY TO MY BIG BROTHER SIMON!!!! Aaagh! You're a teenager now! Now there are three teenagers and me! Please pray for my parents! (Ha! Ha!)
Wednesday, June 28, 2006 9:46 PM PDT
Well, the weather continues to be very warm in Oregon. On Sunday it was 102, Monday 102, Tuesday 100, and today possible 85- 90. The exciting thing is that I have gotten to go into the pool, my new love! Now don't get too excited, my pool is of the purple, hard edged, twelve inch deep variety. Needless to say, it has been awesome. Yesterday I had a morning swim of over an hour and an evening swim of over an hour. Today I was outside for over 2 hours. I LOVE THE POOL!!!! I think if I could spend every minute outside I would. I throw a fit if I have to come in (boy, my mom loves that!). So, if you are looking for me...call "Pool boy!" Yep, that's me!
On a more serious note, please keep my brother, Adam, and sister, Stesha, (and the whole youth group from Reedwood) in your prayers, They are in Mexico and will be working their way home soon! Pray for safe travels.
Also, keep Robert in your thoughts. He is recovering from hip surgery. From his blog (or/robert) it sounds like it has been very uncomfortable. Pray for speedy recovery!
Finally, keep the following families in your prayers, they have recently lost their child...Jacob (fl/jacob), Jay (ga/jay), and Benny (az/bennylove). There is no easy way to lose a child. Also keep Kaitlyn's family (visit/kaitlyns) in your prayers. She is not doing well and her brother passed away recently following surgery.
Love thoroughly...Live fully..forgive quickly...peace always...
Javad
Sunday, June 25, 2006 9:15 PM PDT
Well, the weather in Oregon is HOT, HOT, HOT! Today the temperature tipped 105 (according to the thermometer that Mommy and Daddy passed!). Needless to say, I am staying inside where there is air conditioning! Daddy filled a pool this evening so tomorrow I am swimming! Yahoo!
Overall, things are good. I have grown out some bug (I can't remember the name, but lets just say that it is a new one that I have never had!) and am now on inhaled tobra as well as Septra! Yeah for antibiotics!
There is still soccer-mania at my house! I have been getting up early as well! The amazing thing is that Mommy is getting up early to watch the games...good job now that school is over! It has been really fun and I love to hear all the groans and cheers!
I am getting excited to start school on the 6th. I think I am riding the bus and either Ann or Deb (two of my awesome nurses!) will go to school with me. It the fall, I think Deb will go to school with me full time! That will be fun! I hope to make lots of friends, but I am sure I will fight the "talking" thing that Mommy talks about. (She says that I will have to start talking or signing so that others will understand me...we'll see!)
Well, please continue to keep Jacob's family in your prayers! It has been a hard transition for them since Jacob's passing!
Talk to you soon!
Please leave me a message to let me know you stopped by!
Javad
Thursday, June 15, 2006 2:02 PM PDT
This week has been full of contemplation for me. On one hand, it is the World Cup, one of my favorite events. If you know me at all, he Olympics and any soccer event are reasons to be rabid! I am not a morning person, but yet every morning at 6am this week I have ben up and on the couch watching whatever game is on! Then I record the next two games which I watch when I get home from work! It's all soccer all the time at my house.
So this is the upside of life right now. The downside is that I am still stunned and mourning the loss of a boy I never met personally Amazing Jacob. This little fighter was diagnosed with a rare cancer and was given 9 months to live. He lived a phenominal 28 months. He and his brothers just celebrated their 6th birthday. He lived with reckless abandon, swimming and playing with his three brothers. His parents never lost faith, never lost hope. They continued to praise God for every day Jacob thrived.
When I checked his site on Monday night and saw that he gained his angel wings on Sunday, my heart broke. Life is so precious. Jacob is now cancer free running and playing and watching over his family. Please continue to keep Amazing Jacob's family in your prayers. He was part of a set of triplets, plus had an older brother as well. They were all very close and the boys had extreme faith that Jacob would be healed. They are all dealing with the loss in different ways.
Being on this journey with Javad has given me new insight into myself, my life, and my children. My faith has grown immensely. My belief in Javad's ability to continue to improve has never waivered. I do admit, though, that after reading of Jacob's passing, I kissed Javad a bunch of times and cried many tears. Over the last few years, too many children have died. Each of these children, although most I have never met, have been crushing blows. I know there is a plan for Javad's life. I believe that he is intended to touch lives (as he has).
Please continue to keep Amazing Jacob and his family in your prayers as well as Oliver.
Leave us a message....
Much love,
Shannon
Tuesday, June 13, 2006 12:32 AM PDT
Please keep the Duckworth Family in your prayers. The Amazing Jacob (link above) gained his angel wings last night. He was a true fighter who amazed many over and over. He leave behind three brothers, two of whom are part of the tripets that he made the third. Please go to theri guestbook and leave them a message of support. (fl/jacob)
Thank you!
Javad
Wednesday, June 7, 2006 10:34 AM PDT
There are many times when we check on other kids and find that he time between updating is far between. I think I understand now. When things are good, what do you say?
Things have been going fabulous. My lungs are the clearest they have ever been, I have more energy than ever, I am feeling good!!!
Things are busy at my house. Mommy and the kids are all getting ready for the end of school. I know that Mommy says that she will be glad when its over! Once school is out, the boys go to Arizona for the summer. This summer, Adam and Stesha are going on a mission trip to Mexico for two weeks, but Adam will go to Arizona after that. I will miss them a bunch. They will be gone until August. When they come back they both will have had their birthdays! I will have missed both!
This summer I am going to school. I am pretty excited about that, I will go two days a wekk in the afternoon. If all goes well, I will go in the fall too! Time is just passing fast. This summer we will also go on some trips with the fam.
Well, I will update soon! Please continue to keep Jacob and Oliver in your prayers!
Javad
Saturday, May 27, 2006 11:45 PM PDT
Well, I continue to surprise those around me with my feats of brilliance. Last week in therapy I not only rode the trike again, but also pushed myself around on the scooter board. Yeah me! :)
Things have been going great. I feel good, have energy and am ready and raring to go most of the time. Okay, I like to sniggle with my mom like the best of them, but, I am ready to play at any time!
I am getting ready to go to school in July. I guess I am looking forward to it. I have been watching the "Going to School" signing time video to help me prepare for what it might look like. Mommy says that I need to start signing again (whatever) or talking (whatever, whatever) because the other kids won't understand when I growl. (Ok, so what!) Maybe I'll just give them my website and they can read all my innermost thoughts and I won't need to know how to sign or talk (ok, I know how to sign right now, but I don't CHOOSE to sign...my Mommy says it's because I'm 4 (whatever THAT means!).
So, this weekend, my sister, Stesha, is visiting her dad in sunny Florida. We are having our sun (in Oregon) in the VERY liquid form! Ahhh, liquid sunshine, the telltale sign of the Northwest!
Well, everything else is going well at my end. Please keep Oliver in your prayers (there's a link at the top of my page!). He is having some platelet breakdown for reasons unknown. Also keep Amazing Jacob in your prayers. He has been in the PICU for awhile and is celebrating his 6th birthday (with his triplet brothers) in the hospital!
Keep those you love close,
Javad
Thursday, May 18, 2006 12:00 PM PDT
Well, yesterday was a BIG day for me! Are you ready???
At OT yesterday, I rode a trike...let me say it again...I RODE A TRIKE! Yes, with my own two feet, I pedaled about 250 feet. Lee, my nurse, and April, my OT, helped me steer, but I used my own muscles and RODE A TRIKE!!!
Everyone is soo excited and I was so happy! Who knew? I am going to keep surprising them!
Life is good!
Javad
Friday, May 12, 2006 6:53 PM PDT
Hi Everyone,
Wanted to drop you a quick note. Things are going really well! I am finally feeling good and ready to go and do things. The weather has been great and I have been going out on the back deck! Mommy is talking with the school people and I am going to go to school starting this summer. Yipee! I am pretty excited!
I have been pretty busy going to therapy appointments and the chiropractor. I think Mommy and Daddy think I will be standing extra tall soon! :)
The big kids have been pretty busy too! Adam is doing a lot of volunteer work for National Honor Society and Simon is playing in the jazz band as well as playing lacrosse. Stesha is playing lacrosse and working at the Island Creamery, an ice cream shop!
I guess with the spring, things are expected to be busy. School is winding down and the spring is winding up! Maybe soon we will go on a trip...we'll have to see!
Talk to you soon!
Javad
Sunday, May 7, 2006 10:49 AM PDT
Hello everyone,
Things are going well in sunny (sort of) Oregon. I am finally feeling better although it seems that EVERYTHING coming into bloom is making things a little rough, for not only me, but every person in Oregon who has allergies. Needless to say, other than having stuff running from my eyes, nose, and other orafices (okay, maybe too much information), I am feeling like my perky, 4 year old self. I am moving around so much, that I am shocking those around me. Yahoo!
I got a new limo (wheelchair) from Shriner's. Pretty cool. It's one I can get pushed around in for those long summer walks! I am really looking forward to getting out this summer. Mommy has arranged for someone to come hang out with me when they play soccer, but if its good weather, I'll go too and hang out outside! Yipee!
Everyone is winding down for the end of school. Soon, all the kids will be out for the summer. Mommy is looking into me going to school maybe this summer, but for sure next year. Look out world, Here I come!
Well, Please continue to keep my friend Oliver
and RachelJoy in your prayers.
Drop me a note and let me know you were by!
Javad
Wednesday,, April 19, 2006 10:05 PM PDT
Well, Mommy stayed home with me. My nurse called in sick (how appropriate since I, too, and sick.) It was noce to be with my mom. Ok, so not so special having her suction my nose and mouth what seemed like evey 2 seconds. My nose kept running (and running!) I slept part of the day, held Mommy's hand while we watched TV, pretty much hung out all day on the bed.
Oh well, I was in a good mood though!
So, if I don't write before Friday, keep my sister, Stesha in your thoughts. She's trying out for the All-Star Lacrosse team....Go Stesh Go! Defend like there's no tomorrow!
Talk to you soon!
Javad
Tuesday April 18, 2006 8:42 PDT
Well, I guess our sick-free times are over for awhile. Although I did get to go see the Wiggles on Sunday (It was fun, but a bit loud! I had to make us leave before the end of the show...I was sooo done!)
It seems that I have come down with a bit of a cold. Grrr. Basically I have stuff coming from every orafice (okay...to much information I know. sorry!)
Maybe some cipro will do the trick! Yeah!
Javad
Saturday, April 15, 2006 4:54 PM PDT
Tomorrow, on Easter, Javad, David, and I are going to see The Wiggles. Months ago I had written to see if we would possibly be able to go to the "meet and greet." i didn't hear from them so decided thtat it wasn't in the cards for us this year.
IMagine my surprise when on Monday I got an email asking if we still would like to go. YES!!!! was my resounding answer.
Needless to say, tomorrow, we will be able to see the Wiggles and meet them (again!) How lucky are we?
Tomorrow, on Easter, we look within ourselves and what we believe. Tomorrow celebrates new beginnings.
Love those who are around you, hold on to all those you hold dear!
Have a blessed Easter!
David, Shannon, Adam, Stesha, Simon, and Javad Mashinchi
Sunday, April 2, 2006 11:33 AM PDT
Hello everyone,
Well, spring break is over and Mommy and the big kids are all going back to school. We have had a good week. Early in the week Stesha, Mommy, and I went to the beach. We had a great time. Mommy and Stesha got clams and I got to go on the beach. Mommy will be putting pictures on soon with us on the beach!
We have hung out the rest of the week. Mommy needed the rest, she has been burning the candle at both ends! Adam and Simon got home tonight and Simon came and gave me a bunch of kisses when he got home. I missed those!
Stesha starts a new term tomorrow. She is taking some fun classes that will nuture the artist in her. I know she is going to be really happy about that! She also got a job at the Island Creamery, an ice cream shop that is owned by a couple at church!
On a sad not, please pray for Angel Ashleigh's family, Jerry Gomez's family, and Angel Baby Jay's family. All three of these fighters passed away this week. Their families could use some good thoughts in these hard times.
Love those around you, live like today is your last!
Javad
Friday, March 24, 2006 9:12 PM PST
Hi everyone,
Well, this has been a pretty good week. SO I said earlier that I was feeling a little under the weather, but I think that (although my tummy is pretty upset..I don't think you want to hear the gory details!) one of my major issues is that I am having some dehydration issues. Mommy was telling Daddy that it just seems to be another clue. WhenI am a little dehydrated, I look like I am coming down with a bug. Give me some extra fluid amd viola' I am cured!
So, Mommy and Stesha are out for Spring Break. We are going to Grama and Grampa's beach house to hang out for a few days. It will be fun! Mommy's friend has a beach house nearby so will be able to get together. I will be a short three day trip, but it will be nice to get out and maybe go to the beach.
Well, I am going to go. Please make sure to keep Oliver in your thoughts and prayers. He is waiting for his new cells to make new blood to put him into remission!
Talk to you soon! Please leave me a note...I love having Mommy read them!
Javad
Monday, March 20, 2006 8:52 PM PST
I have changed my background in honor of Oliver. He recently got another transplant (from his Super Brother Jacob) and they are waiting for that super blood to start making cells for him. Please keep this in your prayers. Oliver is a pretty cute and tough little guy. Visit his website through the link above.
Things are going pretty well at this end. I have been fighting off some kind of cold (which seems to be the routine now!) I am still having some mood swings from the Prednisone. Usually by the afternoon (and possibly some tylenol...)I am a happier camper!
There is only one more week until the big kids are on spring break. Adam and Simon are going on a trip with their mom and Stesha and I are hanging around home. Mommy will have a birthday during the break and I heard that something special might be happening.
Well, sorry to make it so short, but I am tired. I didn't nap today (as usual!)
Javad
Wednesday, March 8, 2006 10:51 PM PST
Well, it has been an entertaining week. This last weekend we all went to Boise, Idaho for a Quiz Meet. I am happy to report that I did incredible! Okay, so that's to good news, but I am still recovering from the trip! It's tiring driving for 8 hours!
TOday I went to Shriners for one of the clinics I go to and am happy to report that I have gained 26 one density this year. My mom was thrilled. As some of you may remember (or not!) I have a pretty "good" case of osteoporosis. When I was two I broke my femur (oh yeah! It was all that running around and jumping off the bed! Hah!) and my mom found out that my bones were about 50 f normal. I get an IV medication called pamidronate every two months that helps to build bone density. So I have more bone! Yahoo!
I was also weighed and measured and am happy to report that I have gained a few pounds and have grown an inch!
Well, overall things are going well...
Talk with you soon!
Javad
Wednesday February 22, 2006 11:20 am PST
This is Shannon. Occasionally, I have to step in and write for Javad, mostly because I don't share everything with him...he is only 4 after all.
Things are okay at our house. Javad has been sick, fighting his favourite bug, pseudomonas. Stesha and I have also been sick. It's hard when I am so exhausted. Really cuts into my Olympic watching (*smile*)! Please continue to pray for Oliver, Daniel, and Sean. Oliver is in REMISSION!!! This next few weeks is going to be difficult, please continue to keep his entire family in your prayers. Please also keep Josh's family in your prayers (or/joshua). This has been a hard and frustrating time. They need your support and prayers as well!
Quoting Julianna's dad:
Love like its Valentines day every day, laugh like your Chris Rock's drinking buddy!
Keep the faith, never lose hope, live everyday like its your last!
Shannon (the cutest boy's personal slave!)
Take care
Wednesday, February 15, 2006 12:26 PM PST
Hello everyone,
Well, here we are, just over a half a week into Olympic-dom. The Olympics have taken over our lives. My mom is a hard core junkie. Today, we are home, and my mom is watching hockey....HOCKEY??? She doesn't even really like hockey, but there is something about the red-white-and-blue of the uniforms, the Olympic anthem playing and the flag with the rings that brings joy to her heart.
I guess we'll watch curling next???
Wish me luck over the next week and a half. Who knows what sports I'll learn about??? Back to Olympic-dom for me!
Javad
PS Please keep Oliver in your prayers as he has another aspirate this friday.
Sunday, February 12, 2006 9:26 PM PST
Well, the Olympics are on. If you knew my mom, you would know that this is almost like the second coming. She LOVES the Olympics! AS I write, she is sitting on the couch watching the downhill. It doesn't matter what the event is, she watches it. Today she was watching women's hockey as if she was the greatest fan of the sport! I know her nose is a little out of joint because she already knows the result of the snowboarding event. (She likes the surprise!) The next few weeks will be all Olympics, all the time. All of my mom's favorite shows will be recorded via DVR and she will find the time to watch them later. After all, it is the OLYMPICS!!!
So, I was talking about how I wasn't feeling well. On Thursday, Mommy took me into the ER to make sure that everything was ok. Well, obviously if I was going to the ER things weren't ok, but she wanted to make sure that there was nothing to really worry about!
They took x-rays and said my lungs looked ok, gave me some fluid (ouch! they had to access my port!), did a blood count to make sure my white cells weren't out of control, and checked my blood gas. They were pretty concerned about my heart rate being high (for three days), but Mommy said that we would go home unless they were putting me in the PICU (which they weren't), so home we went with a prescription for tobramyacin (which Mommy is convinced is magic medicine!). Needless to say, I am feeling mucho betta now!
Well, as you can see, all is well in Oregon.Please remember to keep my dear friends in your prayers. I have put links to them above.
Javad
Tuesday, February 7, 2006 11:15 AM PST
Well, today Mommy is home with me. Our nurse couldn't come, so mom and I get to hang out! Yipee! I have been feeling pretty good. I think my sinus infection is pretty much gone although I still have such stinky breath (mom calls it the "death breath!") I think she is going to try to get me into the dentist so I can get a good cleaning and then have shiny teeth and good breath!
Eveyone at our house is doing ok. Stesha has an owie which is causing her pain, but I think she is going to the doctor to hopefully get better. She is getting ready for lacrosse season, so she's excited to get better! Adam is involved in the play. He's doing sound. Simon is getting ready to (hopefully) play lacrosse this spring. Mommy is looking for a league for him. Mommy and Daddy are doing well!
Well, I'm gonna run. It's not often that I have Mommy all to myself. I think I might take a bath and then we'll hang out and play!
Take care of those you love...please keep my friends in your prayers. Oliver is having a bone marrow aspirate tomorrow...pray for remission!
Javad
Thursday, February 2, 2006 4:45 pm PST
I have decided to write for Javad today because there are many heavy things weighing on my heart. Caringbridge is a double edged sword. It's a gift, a way to keep people abreast of how your child is doing and a way to keep up on other children. I have a list of kids that, every day, I check up on. Many of these children I have never met. Some I have gotten a link from another child's link. Each of these children touch my heart in different and special ways. I think Javad was brought to my life to give me new appreciation of life. I am forever grateful for that. I know that we aren't the most visited site, but I ask, if you visit us, please go to visit our friends, Oliver and Sean and Daniel. Oliver's family is really struggling through his relapse and need a lot of support and love. Sean and Daniel are struggling through some unknowns.
Thank you for coming by and please leave Javad a note to let us know you were here!
Saturday, January 28, 2006 11:01 pm PST
HI everyone,
Things have been going well in the soggy stae of Oregon. Holy Cow! Soggy is an understatement! It seems like it is just raining and raining (maybe because it is!) I am listening to the news right now and it is saying that there will be 3 feet of snow on Mt. Hood through the weekend. That is about an hour away from us. We don't get snow down by our house, but it just continues to rain!
I have been feeling pretty good. I think I have a touch of a stomach bug, but other than that! I am starting to wean off the Prednisone, so maybe my cute puffy face will start to go down!
This week we go to Shriners to start a new physical therapy plan. I think I am going to go up there for speech, OT, and PT. Maybe I can stay healthy and get moving in the right direction!
It is the end of the semester for Adam and Mommy. Adam has spent a lot of time doing lots of homework for his finals and Mommy has been staying at work sometimes until 7:30pm. She has been really tired. Luckily she has some time to relax this weekend and there are planning days next monday and tuesday! Refreshing!
Well, I am going to go (to sleep!). Please remember to keep my friend, Oliver, in your prayers. He recently relapsed and it is a very difficult time for his family!
Also keep my friends Sean and Daniel in your prayers. Daniel has gotten some questionable news and it is hard when you have more (than the ton you already have) on your plate!
Talk to you soon! Please keep me in your thoughts that I stay healthy!
Javad
Sunday, January 12, 2006 11:30 PM PST
Hi everyone,
Sorry that I haven't updated for a week. I have been back battling the same old bug as always. SOmtimes I feel as if we are on a roller coaster and I never know when it is going to end. Some day. Overall I really am feeling pretty good. I am in a great mood and (after getting all the treatments in the morning) I am ready to rock and roll!
So I guess the most exciting thing (although pretty embarrassing) is that I have been going potty on the big boy potty. Everyone seems pretty excited about this major event in my life. I guess because of my disease, the expectations were pretty low by many, but HELLO, it's me you're talking about! I am the big man!
Okay, enough of the embarrassing stuff. Let's see, the other exciting stuff that has been going on. The bog kids are all doing their school stuff and last weekend Mommy went to a Lacrosse coaching clinic to get ready for the upcoming season...Go Mom!
Well, I am going to go to sleep. I promise to write more soon!
Javad
Sunday, January 15, 2006
Hi everyone,
This week has been pretty good. I am definitely feeling better. I have been in my usual goofy mood, dancing and laughing away (ok, so Mommy thinks the laughing hysterically is prednisone induced, but whatever!) Whether steroid or goofy 4-year-old induced, I am still in a good mood!
Starting this week everyone is in school (Stesha started on Monday) so it's just me an my gals at the house! I am pretty busy, standing (in my stander...don't get tooo excited!), running around in my chair (yes, we have blown off the dust and after a huge fit the other night, I ahve seen the light and am now running around chasing people in my chair), doing preschool stuff (whatever I like, of course!).
This week, my Auntie Megan brought me this really cool magnetic chalkboard that is the perfect size to sit on my lap. She also game me these really cool magnets (tractors and farm stuff like Papa!)!
Anyway....as you can tell is that thinkgs are going alright at this (very soggy!) end!
Please remember to keep my friend, Oliver, in your prayers. He recently relapsed and it is a very difficult time for his family!
Javad
Thursday, January 12, 2006 11:44 PM PST
* We fixed the links to Oliver's page!!!*
This week has been an interesting one. I pumped faked everyone out by acting like I was getting sick. I might be brewing an ear infection, but I think I am not really sick.
I have been feeling pretty good, playing, standing, "walking" around in my chair! I finally am moving in the right direction! Yahoo!
I have been staying awake very late (or perhaps its very early) so everyone has been a bit anxious about that! I am tired, Mommy is tired, Daddy is tired!
Please stop my friend, Oliver's page. He has relapsed and it is a very rough time for his family. Please keep him in your prayers!
Javad
January 10, 2006 7:09PM PST
Hello everyone,
There are days when you consider yourself lucky! Even though I am still not my hundred percent best, I am feeling ok! Today, my mommy read me an update off our friend, Oliver's page. We met Oliver last year when he had come into the hospital for leukemia. It had been a shocking diagnosis and Mommy met his dad downstairs in the cafe ordering dinner at 10:30 om (a sure sign that you're sleeping over!) looking a little shell-shocked. Mommy struck up a conversation and they touched base from time to time. Oliver was very lucky, as cancer kids go, and his Super big brother was a bone marrow donor. So Oliver had a bone marrow transplant which was successful! So it seemed all things were good. Mommy read the other day that Oliver had been very sick and over the weekend he was diagnosed with viral meningitis. (Meningitis is kind of going around in our area right now! Yikes!) Anyway, today Mommy read Oliver's journal and his Mommy has said that Oliver has relapsed. It is very sad and frustrating for his family. Please keep our friend in your prayers. He just celebrated his first birthday not long ago....
Javad
Saturday January 8, 2005 12:10AM PST
I am writing on Javad's behalf this morning (notice the time) although he is in bed watching Baby Einstein! Aah! The power of a late nap!
I am waiting for Stesha to get home from a show that she went to. She has some friends in a band and she and another friend went to wath them. It's pretty far away, although my phone has been ringing off the hook with her giving me the play by play. Don't get me wrong..I am glad that she's being responsible and keeping me up on things. It earns more responsibility!
Anyway, Javad is doing well. He successfully pulled through his bout with pneumonia. Now if I can get home going to sleep at a normal time, we'd be set. He has taken to taking these naps at 4pm and David wants to let him sleep. So tonight, he woke up at 8pm (yes, you read it right!) and now here I am (David sleeping next to me) writing about the scenario while Javad watches movies. Aahh...the power of a DVD player in his bed! :)
Things around our house have been good. Tomorrow is the "big day" for us. Now, you may wonder what the "big day" is? I am taking down all the Christmas Decorations. I am kind of sad, they cheer me up, but I guess it's time. If not tomorrow, then who knows when I will have time.
At work, there is only three weeks left in the quarter, and I have a class to create. Sometimes I wonder...have I bitten off more than I can chew? Maybe, but I am excited about the new class. I will be teaching a Math in the Media (music, movies, and photography) in addition to my other classes. I think it will be a really neat class if I can get it together!
Well, I really should go!
Talk to you soon!
Shannon
PS Please sign Javad's guestbook! Let us know you were here!
PPS Please keep our friends in your prayers Oliver is fighting viral meningitis and has recently had a bone marrow transplant. Please keep him in your prayers. Amazing Jacob continues his fight. He is doing well right now, but his battle is not over. Jay especially needs our prayers right now!
Friday, December 30, 2005 10:03 AM PST
Hello everyone,
Well, it has been a busy week. Christmas came and went. Everyone had a great time, including me. Mommy and Daddy thought it was funny that I wouldn't open any presents that had this blue paper on it. I don't know why I didn't like it, but I didn't even like them opening the presents!
I have beem feeling a bit better. I have been making it off the vent for longer periods of time and overall am feeling good. Mommy has been battling a rough cough, but other than that I think that the Mashinchi household is getting well.
Today, marked a monumental event in our family. My Auntie Megan (my mommy's sister) got married. I wasn't feeling up to being in the wedding, but I was there none-the-less. Mommy was tha Matron of honor and Stesha was a bridesmaid. It was beautiful.
Well, I am making this short, but I will write more later!
Talk to you soon!
Javad
PS Leave me a note in my guestbook to let me know you were here!
Wednesday, December 21 3:12pm PST
Hi everyone,
Well, our house still isn't more festive than the last time I wrote, but I heard Mommy talking that it might happen tonight. She hasn't been feeling well, so that makes it hard! Okay, so I haven't been feeling well either. Yesterday, Mommy took me to my favorite hospital's ER for a "check-up." They x-rayed me and poked my port to get some blood (ouch! even if Jennifer did it, OUCH!!). Of course, I behaved wonderfully. I didn't require oxygen while I was there, was saturating great. Okay, so I was a little gray around the gills in the morning. I like to keep it a little exciting for eveyone. So, when I get home, I start having difficulty again. Nothing major, just enough to keep everyone on their toes! Dr. Nichols told Mommy that I have pneumonia. I could come home as long as they brought me back if I started turning toward the worst. So, here I am, at home, with everyone working to make sure that I am okay. Sometimes its not so great to be the center of attention, even though I know its because they love me.
I am hoping that all will be okay for the holidays, that we will be home, together.
Talk to you soon!
Javad
Sunday December 18, 2005 7pm PST
As I sit with Javad asleep next to me, I am given time to ponder on the upcoming week. It is a week of joy, and for some sorrow. I read tonight that one of the children I keep up with, Ben Murphy has passed away after a long fight with leukemia. Although I didn't know Ben, nor do I know his parents, I shed a few tears and my hearts go out to them. To spend the holidays without your child must be horrible. A woman I know, lost her baby recently. There was a problem before the birth and she delivered a stillborn. After 9 months of waiting, preparing, putting presents under the tree in case of an early birth...to be left with empty arms is awful. There are children that continue to struggle, families in crisis, hoping that their child makes it through another holiday. Another family I check on regularly, Devin got back some questionable scans. What do you think, as a parent, "Is there a relapse, it this our last Christmas? Dare I even think these thoughts?" Kendrie's family is celebrating her end to chemo. A Christmas of new beginnings.
Where do we stand? Javad is doing well. We haven't been to the hospital in almost four months. Many find joy in this. Don't get me wrong, we do too, although I recognize that we can do so much more at home now, that it would take a major event to need to go to the hospital! All of our family is holding their own. Adam, Stesha, and Simon are all doing well. Everyone is relaxing and enjoying the break from school. Tonight we got some snow...beautiful, but this brings us back to the season ahead.
Last night we went to a church to experience what was called, "The Journey." A man that David works with was a participant. It was like living theater experience of the Christmas story. We were travelers along the road to Bethlehem. Okay, so it was a little hokey at first, with men dressed as centurians and lines haltingly being said, but once I quit worrying what the kids were thinking, I let myself experience the experience. Once we got into the "stable," we saw them. There they were, "Joseph", "Mary", and a live baby Jesus. For a moment, as I stood there, I felt something deep within me, a connection. This was a reverent time, these people who were seeking truth. Isn't that what we are all seeking? Truth...Peace...Hope.
As this holiday comes, look into yourself and pray for those who are looking for those things. I continue to pray for all those I know, whether in person or through the many caringbridge sites I visit each day. Unfortunately, selfishlessly, I continue to pray for Javad, that his life be long and full. That I may be able to support those who have experiened loss without actually experiencing it myself.
I hope your holiday is filled with more joy than you can stand.
Shannon
Thursday, December 15, 2005
The holidays are rapidly approaching and my Mom doesn't even have our house decorated. Where's the festive spirit? No, really, the spirit is there. She bought this really cool Santa that climbs a ladder under the tree (while playing carols) and I LOVE IT!! I just love laying underneath the tree and watching it.
This is the time of year when you really think about what is important in life, family, friends. This has been a hard year in many ways, for me and my family.
This past summer when I had that really bad breathing problem (where I almost died!), they told Mommy and Daddy that they were going to have to put the trach in, they were so sad. I know that they had dreams of me making it without the trach, but I guess that was not meant to be.
Mommy says that sometimes the dreams you have, may have to be renegotiated. Sometimes what you think is what your dream is, may not be what you get. Four years ago when I was born, Mommy and Daddy (and all those in my family) had a vision of their new child. I wasn't what they expected. I was small, frail, and helpless. I couldn't move, had a hard time breathing and needed lots of help. Although I was different than expected, in many ways I ended up being so much more than expected.
The memories hat have been built in my family over the last few years are rich. We have all learned to appreciate the small things. We have learned to value each other and the differences in those around us.
Aah! The Christmas spirit...what exactly is that? Its the thought that you keep in your mind for others who are struggling. Prayers that you say each and every day for those who need an extra push. It the "thank you's" you give every day for the good things in life. The Christmas spirit is the joy that runs through you during this time.
There are those who need our prayers, because although we are in the holiday time, they are still fighting the fight. Please drop the following people a note...no one should feel crummy during the holidays!
Dylan
Amazing Jacob
Please celebrate with our favorite Georgia Peach Kendrie who is celebrating the end of her treatment for leukemia. What a holiday gift!
Thanks for stopping by and please leave me a note!
Javad
Monday December 5, 2005 10:36 PM PST
Hey everyone!
Well, I have to say I HAVE FINALLY TURNED THE CORNER!!! Last week when Dr. Nichols put me on Prednisone, Mommy wasn't too thrilled, but I am feeling sooooo much better! (So, she's okay with it now!) ALthough I am having some issues with "'roid rage" (not in the "I'm pumping iron sense, but rather in the "I am having mood swings" sense!) I am either crying the big crocodile tears or cracking myself up! Everyone is not sure whether to throttle me or laugh at me!
Stesha's birthday is coming up on Wednesday (the big 16!) so that is the big news in our house right now!
Pretty much that's all! Mommy is going to decorate (maybe tomorrow!) and the big kids are all getting ready for school to end for the break!
Please continue to keep Amazing Jacob, Dylan and Sean in your thoughts and prayers! Everyone deserves to be feeling healthy and at home for the holidays!
Take Care!
Javad
Friday, December 2, 2005 9:28 AM PST
Hi everyone,
Well, this last week or so has been fairly uneventful. I am still sick. (which I have been for what seems like forever!) This week Mommy and Daddy took me to Dr. Nichols office. They talked about how frustrating it has been because I am sick. I agree. I want to be able to do things!
Dr. Nichols put me on Prednisone for a week to see if that will give me a boost. I am feeling a bit better so that is good.
Really, not much has been going on. I heard Mommy say that she is going to start decorating for Christmas. That will be fun! I know she got a new "big decoration" with me in mind. Mommy collects Santa things and every year she gets a "big" one. This year it's a ladder that Santa is climbing up. SHould be neat!
If you haven't read my sisters neat observations, go back in my journal. I posted it!
Well, I am going to go, for now.
Please continue to keep the Amazing Jacob in your thoughts. He continues to battle every day! What a trooper!
Bless you all!
Javad
Wednesday, November 23, 2005 9:43 PST
Javad is sleeping, so I thought I would write on his behalf. He usually has a lot to say, so I hope I can do him justice!
Thanksgiving is upon us. Javad is the only kid home with us. All the other kids are gone...Adam and Simon in Washington with their other family and Stesha in Los Angeles with cousins.
What should we be Thankful for? There are so many things. We aere thankful that Javad is here, that he continues to take breaths every day. There are so many other children that aren't home right now. One's that are sick. There are so many right now. So many families that are hoping that there is something to be thankful this year. Please keep these children in your thoughts and prayers. Maybe drop them a note Jacob's Page and Dylan's Page
Keep our friends Robert and Jacqueline in your thoughts. The still mourn daily over the loss of their beautiful Ingo, and for Alex and Kiera and Liam, their son, who is struggling.
I hope your holidays are good one, filled with love, laughter, and family.
Thursday, November 17, 2005 10:00 PST
My sister is a very thoughtful young woman who has struggled with the ups and downs of life and my impact on it. I wanted to share something that she wrote (with her permission, of course!)
"Have you ever noticed how people begin to act different around you the second something "tragic" happens in your life? I mean something as minorly life changing as a pet dieing will make people treat you different...they there is my life. It's different. I will admit that. I live the life that no body wants. That people look at and think oh thank god it's her not me. I know this about myself and over four years i have learned to accept that. I know that my life will never be different but who cares it is what it is. I am reading a book called "My Sister's Keeper" and it's abotu a girl that files a law suit because her parents are always using her for her sisters cancer treatment because they have matching something that you need to have matching ot be a bone marrow doner and stuff. I was reading a chapter that is in the perspective of the mother, Sara, and she says "when i first became a parents i used to lie in bed at night and imagine the most horrible succssion of maladies: the bite of a jellyfish, the taste of a poisonous berry, the smile of a dangerous stranger, the dive into a shallow pool. There are so many ways a child can be harmed that it seems nearly impossible one person alone could succeed in keeping him safe...you could stay up all night and still not count all the ways to lose the people you love. It seems to me, now that this is more than just a hypothetical, that a parent falls one of two ways when told a child has a fatal disease. Either you dissolve into a puddle, or you take the blow on the cheek and force yourself to lift your face again for more. In this, we probably look a lot like the patients." Now take what she said and i could have that be something i would say but not for my child but for my baby brother. It's the truth when told that someone you love dearling has a fatal disease you either fall apart or you take it or what she didn't say is you can stuff it away and act as though it isn't true. That is the mistake I made. I stuffed it away until i watched him stare at the light at the end of the tunnel. Until i watched him look death straight in the eyes and glare. Until i saw him tell death no that he was gonna make it and you wanna know what he did. That is what i have lived for four years and i wouldn't have it any other way because I love what i have gotten out of it. So there you can treat me different you can act like i am disease and i don't care. My brother has Congenital Centronuclear Myopathy which is a pretty bad muscle disorder and we have almost lost him twice but he is stronger then that and he has made us all stronger then that too!!!! And you know what LIFE IS AMAZING!!! Even if life throws you a curveball just use that curve ball to win the game!"
With people like this around me, can't you see why my life is great!
Please leave me a message and let me know.
Javad
Saturday, November 5, 2005 9:48 PM PST
Well, I must say, I have spent a lot of time hanging around my room. It's a bummer not feeling well! I have pseudomonas (again!) and s. maltophilia (again!). I am just s great host, I guess. Maybe I shouldn't be so nice and I wouldn't have these nice "bugs" in my body!
Okay, enough complaining! Things have been going pretty well. Although I am not feeling my best, mostly you wouldn't know it! I am acting pretty well, just a little tired, have LOTS of drool (yuck!) and need to be on the vent more. (yuck!)
THis week I had my appointment at Shriners. It went pretty well, nothing new to report!
This next week, Mommy goes to Denver to the Math COnference. I will miss her, but she's pretty excited about going. Something about seeing someone from the show Numb3rs. Oh and going to some geeky meeting too! :)
Well, I'm off to sleep. Please keep the Amazing Jacob in your prayers. (fl/jacob)/ He is fighting off a bladder issue caused by chemo. ALso Dylan in NY (me/dylanhartung). He needs to stay "healthy" to keep on the med trials for neuroblastoma. SO many kids to keep in your prayers.
Talk with you soon!
Javad
Tuesday, November 1, 2005 late at night
Here I sit, surrounded by the men in my life. Obviously, this is not Javad, but rather Shannon, having one of those "mom" moments!
It was four years ago today (well, this morning) that Javad made his first appearance into our hearts. What a day that was! Full of ups and downs. It was a great precursor to the last four years. I feel grateful that we have made it four years. I feel confident that we will make it many more. Javad is doing well. He is the light of our lives. We feel blessed to have him every day. Even now, as he struggles with the fourth round of whatever bacteria of the moment he is growing, his smile it contageous. The picture above should say it all. What a fighter!
Thank you all for being a part of this journey. My prayer is that we continue to walk it together. Your support for Javad and our family is amazing!
Keep those who are in the fight in your prayers. Please light a candle for Ingo whose spirit lives on and for Liam who is struggling. Each of these boys is a gift that we treasure for no matter how long they are with us.
Enjoy your day, hug your children, smile at someone who looks like they need it!
Shannon
Tuesday, October 25, 2005
As I am coming up on my big 4th birthday, I am getting quite thoughtful. This last weekend my Mommy and Daddy had some new friends visit. They are Robert and Jacqueline from the Netherlands. They are really nice people who touched me and kissed me. They told me how wonderful I looked and how strong of a boy I am (boy, that made Mommy's eyes light up and made her smile!)
Robert and Jacqueline told Mommy and Daddy about their son, Ingo, who had MTM. He passed away last February because he got pneumonia. It was very sad. Ingo was a very beautiful little boy. I know that he will be an angel in Mommy's heart.
My birthday is on November 1. I don't mean to brag, but there have been some times over these last few years that it has been very scary. Luckily, I am strong and stubborn. I have things to do, lives to change, the medical community to impact. There is no stopping me. Just wait until I can talk!
Look in my photo album and you can see our new friends!
Leave me a message in my guestbook. Please leave me a note that starts with...
What I've learned is...
Talk to you soon!
Take care!
Javad
Wednesday, October 19, 2005 6:08 PM PDT
Hi everyone,
I know it's been awhile since I've updated. My mommy (and dictatee) has been sooo busy this week, she hasn't been able to help me out. What is a little man to do? Well, I'd try to stay awake for her, but she was coming home tooo late.
What was she doing, you ask? Well, on Thursday through Saturday, she went to the NW Math Conference. Sounds great if you are a math geek (like my mom and my sister!), but not so much for me. I don't know anything about math except my Mommy teaches it!
She came home on Saturday afternoon (after going to the Cross Country Meet) and we hung around. I liked laying with her and playing, but I could tell she was toooo tired to be my typing slave!
On Sunday, the whirlwind began! Mommy and Stesha went to my Aunt SueAnn's baby shower. She is going to have a baby (my new cousin) in December! The baby is due on Christmas! Wa-hoo! Anyway, Mommy came home really fast and then left for the Family Voices Conference in Hood River, OR. (about an hour and fifteen minutes away).
Family Voices is a really cool organization that Mommy is really excited about. She has been telling me all about it! It is a grassroots organization that works on issues specific to children with special health care needs. They work with legislation nationally and try to make other differences locally. Mommy came home pretty pumped and see that this organization can really make a difference. Every state has a chapter and she would be happy to tell you about it if you send her a message. I am going to have her put the link at the bottom of my page, so check it out!
Anyway, so now she is finally home! I have been feeling pretty good. I am growing some bug but it's a watch-n-see one! Mommy is going to talk to Emanuel to set up my rehab program! I am pretty excited! We'll see!
Well, all the other kids are good (I know, I know, enough about me!)
I was reading Julianna Banana's site (www.caringbridge.org/canada/julianna) last night and she had a great idea that I would like to continue.
Please sign my guestbook and include a comment that starts:
Life is like...
Thanks!
Javad
Monday, October 3, 2005 9:02 PM PDT
Hi everyone,
Things have been going really well at the Mashinchi house! You know how it is, when I am feeling well, everyone is feeling well. Isn't it all about me? At almost four, I certainly think it is!
Okay, I will tell you about everyone else first. After all, I am a thoughtful boy!
Adam is doing really well this year so far. He is taking some honors classes thisyear. From what Mommy says, that means he is smart. It seems to be going well although I have heard him complain about some book, "The Scarlett Letter" that he has been reading. Hmmm. I think that being able to read is a really cool thing, I can't wait. I'm sure that I'll never compain about books! He is still running cross country and Mommy says he is improving all the time. Go Adam!
Stesha is doing well in her classes at PCC. She is taking German, Math and Government. She likes school a lot better this year and she seems happy. She kisses me a lot when she gets home, so that's a good thing! She is also running cross country this year. She is improving all the time although she has bad shin splints which are making it hard!
Simon loves middle school so far. He is doing really well so far. He is playing in the band.
Overall, I am doing great. I cotinue to get stronger every day. Everyone is very impressed with my strength and how well my lungs sound. Mommy and Daddy are thinking about sending me to school sometime in January if I keep getting stronger. I am hoping that I can go to school soon, but for now we are doing lots of therapy and school at home!
Well, thank you for stopping by and checking on me! Leave me a note if you have time.
Love to all!
Javad
Thursday, September 29, 2005 1 0:54 PM PDT
Hi everyone,
Well, I must say that things are going well. I am getting stronger every day. Yesterday I was off the vent for 13 hours. I am feeling great!
Today I went to physical therapy. I went later than my usual time and did a super job! Normally my appointment is at 9 am, but I am not the greatest during that time. I need a it of time in the morning to wake up. I am not really an up and at'm kind of guy. Now, don't get me wrong, I wake up early, but not ready to rush out the door.
Things have been good at home. Mommy has been working hard and Daddy has been as well. Adam and Simon have been going to school and doing well. I heard Simon tell Mommy that he got the best grade in the class. Way to go Simon! Stesha started school at Portland Community College on Monday. So far, she seems to like it!
Adam and Stesha are also running cross country. That also seems to be going well.
Overall, I seem to be getting stronger every day. My big 4th birthday is also coming up soon.
Well, I am going to sleep. I am tired!
Javad
Saturday, September 24, 2005 9:35 PM PDT
Well, it has been another exciting week in the life of (me!) Javad!
I am generally feeling GREAT! So great that I haven't really been sleeping that much. The other night, I decided to stay awake until 1:30 am. Mommy and Daddy were already asleep, but (I'm sure that it was the Prednisone!) I COULD NOT sleep!
Mommy had Anne (one of my super nurses) call Dr. Nichols about decreasing my Prednisone. Luckily he has finally decreased it and maybe, just maybe, in a few weeks,I will finally be free of that icky stuff. Then maybe Mommy will quit telling me that I am manic! :)
Everyone else is doing pretty well. Adam and Simon have been working hard in school and Stesha starts school on Monday. Mommy has been really busy at her school. She hasn't been coming home until six o'clock every night. She says it's been a good year, just busy!
Well,I should go. Please continue to keep Jacob, Oliver, and Liam in your prayers! Also keep those who have evacuated in Texas (including my friend, Benjamin, ans his family) in your prayers as well as those who are trying to get settled from Hurricane Katrina.
Talk with you soon!
Javad
Saturday, September 17, 2005 9:12 PM PDT
Hi Everyone,
This week has been one of those weeks. Not really bad (for me),just a little off. It started out that Mommyand Michelle had to change my trach because I was having a little bit of a problem. okay, if you've never had that done, let me tell you, not the piece of cake that they imply! When Mommy changed it after I got home from the hospital, that was a bit of a shock! I had a cuffed trach when I came home and Mommy changed it to an uncuffed one. For those of you who are not trach-knowledgeable, a cuffed trach has a little balloon around the tube that provides more resistance. Okay, so back to the explanation...the cuffed trach is igger around than the uncuffed, so when Mommy took it out, it hurt! I cried, Mommy gave lots of kisses and all was well. So on Tuesday when she had to put the cuffed back in, she had to PUSh the cuffed trach back through the hole. Can we all say OUCH!?! It was really painful! I really cried and both Mommy and Michelle kind of cried too!
So, I now have the cuffed trach and I am doing well. We found out the I am indeed growing pseudomonas (my favorite bacteria of choice!), but overall am feeling pretty good. I am having times off the vent for six or more hours (which makes my parents happy) and am happy. I think they are making inroads agains th bug. I am using my tobramycin faithfully. I am going to conquer this bug!
Okay, so I know you are thinking that all seems fine, so why was it a rocky week? Well, I guess the rocky week wasn't really me, but rather for my mom. Today she went to the Children's Cancer Association Celebration of Courage. My friend, Gehrig (visit/ gehrighelenabaur) was a "Hero Kid." (I was a hero kid two years ago...visit www.chidrenscancer association.org to read about the her program!) So anyway, Mommy went to the celebration (which she said was great!), but she talks about her heart being heavy. Last nigt when she came home from work, she hugged me a whole bunch. She had been reading Julianna Banana's site (canada/julianna) and it touched her in a deep space.
We all know that nothing in life is guaranteed, but I guess when you have a kid like me, the constant reminder that something could happen can sometimes feel overwhelming. I know that my parents love me to no end. They pray (and others do too) for my continued health and an increase in strengh and endurance. My parents are very spiritual people and know the God is working in my life as well as theirs. Today, after Mommy and Stesha came home from the Hero Celebration, Stesha was crying. She said that sometimes she wishes that we weren't part of the "hosptial community." She said sometimes it's just too hard, so many people that son't make it, so many that are sick. Mommy asked, "But would you want to go back to the person that you were before?" From my view, this is the core question they struggle with. Each person is a better prson sinc I have com this family. Now I am not full of ego and say tha I am the greatest thing since sliced bread, but I personally know that they are all stronger, more patient, more understanding and forgiving that they were four years ago. Each looks to the core person now, not just th outdi. Now, please don't think they were shallow before, just having a child like me around makes you look deeper into yourself.
Anyway, please keep some of my friends in your prayers:
Oliver (or/oliver) is post transplant and is waiting for engrafting. Please keep him in your thoughts.
Jacob (fl/jacob) is battling some brutal bladder issues and continues to fight for is life against the cancer that is ravaging his body.
Kaitlyn is also fighting for her life. Please pray that she has comfort and peace.
Thank you for stopping by. Drop me a note if you can, I love to see who has been by!
Javad
Sunday, September 11, 2005 9:50 PM PDT
Please remember all those who are still mourning the loss of their family four years ago. Please also remember those who have been devastated by Hurricane Katrina. Javad is doing well. I want to thank all those who check on him regularly. I did want to clear up to some confusion regarding the little boy, Jacob, that Javad mentioned. Jacob is one of triplets and has been struggling with cancer. His family has been struggling and praying for Jacob to be healed. Please continue to keep Jacob and our friend, Oliver, in your prayers. They need your prayers for a complete cure.
Shannon
Saturday September 10, 2005 6:58 PM
Okay, I am so sorry that I haven't updated in awhile. My mom, you know, the one that types for me, just started school this week and things have been kind of hectic. She is tired and doesn't want to take care of it when she gets home. Well, I talked to her about it and today she finally pulled out the computer so we can update.
I came home on Monday (Labor Day) in the afternoon. I was feeling pretty good the last few days I was in the hospital. The main reason that I had to stay was that Dr. Nichols wasn't sure what had happened in the first place. When I came home, I was feeling good. The first night I was off the vent for two hours. Since then I have been off for as much as five hours. I think we all feel pretty good about things.
This week everyone went back to school. Simon started seventh grade on Tuesday. He was pretty nervous but it was okay. I waited for him all day and then let him give me lots of kisses when he got home. It's my job! :) Adam started in Wednesday. He's in 11th grade. Things seem to be going okay for him. Stesha doesn't start until the 26th. She's also in 11th grade, but going to a different school than Adam. They are both running cross country this year. Adam has been doing it for 2 years and this is Stesha's first. Mommy went back to school too. Well, she teaches school, so I guess that's sort of going back to school. She says she's a little overwhelmed, but I know she will get it going soon!
Please keep some of my special friends in your prayers:
Oliver (or/oliver) had a bone marrow transplant a week ago. Please keep him in your prayers that all goes well.
Jacob (fl/jacob) has really been stuggling. Please keep him (and his family) in your prayers. He almost gained his angel wings, but them a miracle came and he is holding on. Please give peace and guidance to his family.
I know there are many others in the caringbridge family that need prayers. Please pray for them too!
Finally, today is my friend, Jack's birthday (oceania/jack). He's three. Drop him a birthday wish. In a few days it's Benjamin's b-day as well (hi/frombenjamin), so drop him a line as well!
Talk to you soon!
Javad
Saturday, August 27, 2005 10:50 PM PDT
Hi everyone!
Well, I am still not feeling well although I did show my best side when Mommy and Daddy took me to see Dr. Nichols. Mommy said I was healed just being in his presence. Well, when I got home, I went back to my not-so-feeling-good self!
Things have been pretty good except I can't leave Mommy and Daddy's bedroom. OK, there are only so many TV shows and movies one can watch...BORING! I guess the one good thing is that I get to sleep with Mommy...off to the couch Daddy! :) Overall I have been sleeping great!
On friday, my Uncle Majid came to visit from LA. Stesha planned a big party for Adam and Uncle Majid coming was part of the big plan. It has been lots of fun! Saturday night a bunch of Adam's friends came over and there was a big party. I know there was a bunch of them because I could hear the music outside! They sounded like they were having fun, laughing and playing music!
Well, Dr. Nichols says we'll ride this out until Monday and if I'm not better, we'll try something else. I do't know what that will be, but Dr. Nichols rocks! :)
I heard Mommy say that she has to go back to work on Monday. Is summer over already? Boy, it has gone fast! This week Adam is going camping with friends, Stesha is starting Cross Country, so I guess Simon and I will be hanging out! He's my favorite playmate anyway! (Don't tell the other kids!)
Well, gotta go. I am supposed to be tired, so I'll pretend to make Mommy feel better!
Talk to you soon!
Javad
Wednesday, August 24, 2005 8:56 PM PDT
Hi everyone,
Well, I am sick again. I am growing that wonderful bacteria, pseudomonas. Mommy and Daddy have been working hard (and through many nights) to get me better. Today is one of the not so good days. I have been on the vent full time and on oxygen. Hopefully in a day or two, I will be moving toward feeling like my old self.
Overall I have been doing well (until this little backslide!). Everyone is finally back home. I have missed my brothers and sister all summer, so I am glad to have them love on me a bit!
Today, Mommy went to the funeral of one of my ICU buddies. Simon was only 16 months old and died last week. It is very sad! Please keep his mommy and daddy, Lisa and Wayne, in your thoughts. I know they miss their Simon a whole bunch.
Thanks!
Javad
Monday, August 15, 2005
Hi everyone,
Well, my Mommy has finally come home from her three week, "Math Camp." She was pretty tired when she got home, but I think some sleep over the weekend has made her feel a little better. Stesha got home from camp last weekend and I heard Mommy and Daddy say that Adam and Simon are coming home this week. Soon, my whole family will be back. I am so excited.
Overall, I am feeling really great. I have been coming off the vent more and more. Dr. Nichols said that I can be off 4 hours a day twice a day (piece of cake! I am doing more than that now!) and in a few days more up to five hours and before you know it, I'll be off all the time except nights and naps! Yahoo! Then I'll really be able to go places. I am so excited!
Mommy and Daddy got a letter from Dr. Cockrell (she's in charge of my physio stuff!) and she wanted to have me admitted for rehab, but I think Mommy is going to talk to her to see if we can do it oupatient in September because my vent weaning is going so great! I want to be able to get lots of attention and I heard that it has been really busy at the hospital.
Well, I should go. The only other thing is this silly prednisone I have been taking. Mommy says it makes me manic. I wake up in the early morning and sometimes don't go to sleep until late. It may be driving my parents crazy!
Talk to you later. Please leave me a note so I know you've been by!
Javad
Saturday, August 6, 2005 7:33 PM PDT
Sorry that it takes me so long to update my journal, but my mom is away at "Math Camp" and she is who does all my typing.
Overall, things have been going pretty well. I survived another week at home without my parents. Well, let me clarify...my dad was away on business for three days and my mom is at math camp. She leaves tomorrow for one more week and then she'll finally be home!
Some of my favorite women have been coming to the house to take care of me and play! It's great! I am getting 24 hour service. Usually someone comes in the morning when I am just getting up and then someone else comes at bedtime. Denise has been taking care of me a lot at night and we have been working on my throwing ability. I am pretty sure I a going to be able to peg someone at 100 paces soon!
Overall I am feeling great. I finally am over the respiratory infection and am feeling healthy! I have been working to get off the vent and am up to 2-2 1/2 hours twice a day. I am antsy for more, but I want to listen to Dr. Nichols...He is the Lung God!
Stesha (La-La) came home from her trip to Florida. I was so happy to see her. I am just hugging and kissing her every time she comes near me! I heard though that she leaves again for camp tomorrow! Hello! What about me! I swear, she is just wanting to be the world traveler!
Well, I am going to run. I am sooo tired. I haven't been taking naps (after all I am approaching 4 years old!). I don't want anyone to know that I am barely keeping it together because I am sooo tired!
Please leave me a note to let me know you have been there!
Also leave my friend, Oliver, from Oregon (that's OR) a note. He is preparing for a bone marrow transplant!
Javad
Tuesday, August 2, 2005 10:03 AM PDT
Hi Everyone,
Well, things are going pretty well at my end! I am finally over the pseudomonas (Yeah!) Last week I went to see Dr. Nichols and he said my lungs look great and that nothing grew out of the culture. (kinda gross, but we were all excited!)
Overall things are looking better (finally!). Dr. Nichols is talking about admitting me to rehab to get me weaned off the vent, but Mommy wants to see if we can get me weaned at home (yeah!). We have been working on it at home and I am doing pretty well so far.
Mommy has been gone at "Math Camp" for the last week and will be so gone for this week and next week. She seems to be having a good and has met a lot of people from her school district.
Daddy has been doing a lot of traveling the last few weeks so he has been gone too. There have been all my favorite nurses coming to play with me all night and all day. It's been really fun. One of the best things has been that I go a new ball pit that Mommy says can be made into a swing too. I can't wait for us to try it out.
Anyway, I'll talk to you later. Please leave me a message to let me know you've been by.
Javad
Tuesday, July 26, 2005 5:19 PM PDT
Well, things have been up and down with me! I like to keep the people in my life hopping.
I came down with pseudomonas (my favorite bacteria) a few weeks ago and there has been feverish attempt to get rid of it! First I was put on Tobramyacin (and inhaled antibiotic) and then when that wasn't giving the result they were hoping for, they added Cipro. My mom and dad were happy...two are better than one in my case. I seemed to be making improvement and then Monday (yesterday) I was feeling pretty crummy again! Needless to say...long story short, Mommy was on the phone to the doctors and we have submitted a whole new round of sputum cultures. (Sounds like some kind of contest, huh?!?)
Did I mention that Mommy is in Corvallis for a three week Math Conference? (Well, she will be home on Wednesday this week, and then friday for the weekend!), but overall she's managing from afar. On Thursday, I think I might go the the doctor and Mommy will talk on the phone while I am in the office. Ahhh....medicine at it's best, by conference call!
Anyway, Mommy is nervous because I am having a hard time getting off the vent. She keeps talking to me about the zoo (she has a one track mind!)!
Talk to you soon~
Javad
Wednesday, July 13, 2005 6:06 PM PDT
Hi everyone,
Well, it has been almost two weeks since I have been home. Things are going okay. Getting used to the trach has been a bit of a challenge. In the mornings I have had a lot of plugs...it's a real bummer. We have been working on getting more fluid in me and Mommy thinks I am growing some pseudomonas (which she sent in a sample for! Wahoo!), so that may be part of the problem. We'll know whether or not I need some meds in a few days (stronger than Augmentin) which could make a difference. SInce I haven't totally been feeling up to par, I have not been off the vent for much time. It's only been an hour or two a day for the while. Mommy is hoping that I feel better soon so I can go to the zoo. She has wanted to do that since we were in the hospital...late at night I would hear..."Javad, think of the zoo!"
Mommy got the call finally that she is going to do this class this summer. We leave on the 24th to go down to Oregon State University for a three week class. I get to hang out with a nurse, which will be far more intereting for me than going to math and leadership classes! She is excited, so I am too. Hopefully it will be nice weather so I can walk around!
I have been making a lot of new sounds. I swear, Mommy keps asking me, "Javad, can you say mama?" (to which I nod, yes, and pucker my lips). Today Mommy has been working with me to say, "LaLa" for Stesha. She comes back from Germany tomorrow. I think everyone is sooo excited.
Adam and Simon have been doing well in Arizona. Adam was feeling a bit under the weather, but is feeling better today. Simon had his 12th birthday at the beginning of July and Adam will have his 17th birthday in August. Me...I don't get a birthday until November...then Stesha and I can party together!
Daddy has been working hard and playing lots of soccer (Go Daddy!). It's been fun to be home and be the center of attention. Daddy is constantly "eating me up!"
Well, thanks for coming by. I'll make Mommy put some new pictures up asap!
Javad
Thursday, July 7, 2005 9:39 PM PDT
Well, I am finally back. Thank goodness Mommy has been keeping everyone up with what has been going on. It has been crazy!
Last Thursday we came home from the hospital. Mommy and I were so tired we slept a lot. I sometimes napped at normal times and then other days, would sleep all night. We layed around over the weekend. Mommy told me that we were going to hang out and take it kind of easy.
I wan't feeling really well over the weekend and had a hard time getting off the vent. Mommy and Daddy were both kind of frustrated about that (me too!) so I spent most of the time on the vent. By Monday, July 4, my heart rate was racing (over 180) and both Mommy and Daddy were worried that I was coming down with something. A few calls to the doctor and ta-da, we were on the way to the emergency room for x-rays, blood gases, and blood counts. Yipee!
A few hours in the the emergency room (where I must say that I am not only popular, but well-known) and I was given the "clean" bill of health. A prescription for Augmentin and we're on our way. I came home, slept, watched a movie and listened to fireworks (which I don't like!)
Now, a few days later, I am feeling much better! I am off the vent for 5-6 hours a day, and am much perkier! I am hoping to comtinue to be off for more and more time, until I am only on for nights and naps!
Overall, everything else is going well. We haven't talked to Adam and Simon in awhile, but Mommy talked to Stesha this morning and things are ok. She comes home in a week! I am excited and so are Mommy and Daddy!
Talk with you all soon!
Thanks for keeping me in your thoughts!
Javad
Thursday, June 30, 2005 8:48 AM PDT
I hope I am not tipping the scales of Karma when I say, "we are finally going home!"
Today is the big day...after just 6 short weeks, trach insertions, and a variety of other exciting events...we are finally heading out toward the homestead!
Javad is doing great. He continues to go forward like the trooper he is, wowing everyone! Although I continue to say that his behavior is similar to that when he was at home before the trach, the medical community is convinved that they have given them a new lease on life. Maybe they have, I will try not to a) argue and b) be irritated about it! (I am having a bit of difficulty with both!)
Today, we just hurry up and wait (similar to being at the airport!). We are almost packed...but we wait for orders to be signed, doctors to come by and so on. I am hoping to blow this popsicle stand sometime shortly after noon! Then home we go!
I'll let you know soon if I have spoken too soon, as Javad does have a bit of a dramatic flair (where, pray tell would he have gotten that?) :)
The rest of the kids are doing well...they sound good. We talked to Stesha on Tuesday and she sounded great and Adam and Simon on Sunday and although they talk about the heat (90 - 100 degrees) all seems well!
Shannon
Saturday, June 25, 2005 10:05 PM PDT
Well, today was a great day for Javad. I continue to be impressed with his resilence (sp?)! Dr. Nichols (our pulmo) is very pleased with Javad's progress and asked that today he be tried off the vent entirely! It is pretty exciting! The first time we tried him, Javad was a little panicky. We put the passy-muir valve on, he looked a little worried, then went with it! The passy-muir valve goes over the trach opening and provides a little back pressure which will allow Javad to talk (we hope!) Today, music to my ears, Javad said "mama" in his growly voice. The first trial went for a hour, then we reconnected him to the vent. The second trial, Javad was off for two hours with the PMV (passy-muir valve) and was vocalizing like crazy. He was humming and cooing. I am very excited. We went on a wagon ride and saw the fish. Then later we wowed the PICU nurses with how great he looks! I think the plan is to go home Tuesday AM. He gets the trach changed on Monday and we have nursing set up for Tuesday. I am not sure if I remember sleeping in my own bed, I think the dogs think I am a stranger, and David is now manning the house alone with no children! I will be glad to go home and enjoy the summer before I go to my workshop in July/August!
Thank you for keeping Javad in your prayers!
Please continue to keep Oliver, Rachel, and Jim in your prayers also! They are all fighting their own battles and can use some good things coming their way!
Shannon
Friday, June 24, 2005 3:21 PM PDT
Hi everyone,
It's still Shannon...although Javad is feeling much better, he is still not up to updating on his own.
Overall, things are going well. Yesterday, we moved out to the floor out of the PICU. Although it is a step in the right direction, it was hard to mek the move. It feels secure in the unit and I know a lot of people. Javad gets great care and I get to socialize...all that for a mere $1000 per day! Hah!
Last night, Javad had one of his nurses from home, Staci, who works at Emanuel..that was nice to have familiarity for Javad.
He continues to do great. He is "sprinting" off the vent (which means he gets time off) and today they took down the cuff (a round baloon-like thing that keeps it secure in his trachea) which means he can make noises and breathe around the trach from his mouth and nose. He has been making "sounds" (very quietly!) all day, so maybe he'll start trying to talk. That would be very exciting and definitely worth it!
Stesha left for Germany yesterday and David called me this am with her on the line too. It was great to hear her voice and she sounded great. I know she is going to have a great time!
Javad should be here until next week sometime, providing all goes well!
Keep our friend Terry in your thoughts, her husband has cancer and is very ill.
Shannon
Monday, June 20, 2005 11:44 PM PDT
Hi everyone,
Well, we have almost been here for 5 weeks. Seems like a lifetime! I keep telling Javad about the zoo and sunshine! He is doing really well after the surgery last week. Sometimes I think he doesn't even know because he hasn't missed a beat! He is being really goofy...laughing and smiling a lot, which is really nice to see. He has been doing "sprints" off the ventilator which means he gets 5 minutes off every four hours. He has done wonderful with those and I anticipate that we will increase the time. The goal is to be off the vent except for nights and naps like before!
They are talking about moving us out to the floor soon. Maybe in the next day or two. I guess that is a double edged sword. I enjoy the staff in the unit and it is in some ways very casual. I am done with school, so there's not a real worry, but I don't want him to get sick. I am not going to be a germophobe (more than usual), but do want him to come home soon. I need to sleep in my own bed before going to the three week workshop in July/ August.
Stesha is getting ready for her big trip. I think she is finally getting a little nervous. We went shopping yesterday and bought Lena (our German girl) an outfit. Lena was excited that the pants in the US are the right length for her. We also bought some gifts for her mother. Today I am getting a few other things. I can't believe that she leaves in less that 4 days. We don't even have her passport yet! (well, it hasn't arrived, but that's a whole other story!)
Overall, things are going well. The boys seem to be having a fine time although compaining that Arizona is pretty HOT!
Talk with you all soon. We are going to try to take Javad out in the Children's Garden today!
Shannon
Friday, June 17, 2005 10:50 AM PDT
Hi Everyone,
Everything is going okay. Javad is comfortable and watching the usual plethora of movies!
We will probably going to be here for another week to two weeks. Not a big deal. Javad will be home before Stesha returns from Germany!
Please keep our new friend, Kaitlyn, who is having heart surgery today.
Shannon
Thursday June 16, 2005 5:38 PM PDT
Hi Everyone,
Well, the deed is done. Javad did well and I am doing pretty weel too. I guess now that it's over, I feel relieved that in some ways I don't have to fight this particular battle anymore!
They took him in around 12:30 and he was done by 1:15 or so. He was pretty sleepy afterward, but woke up after a few hours in the PICU. We have just given him some meds to keep him comfortable. He was saying that he hurt. I think the plan is not to paralyze him for a few days, but rather have meds on hand for whenever he seems to need it or asks for it!
The boys left yesterday for their summer adventures and we are anxiously awaiting Stesha's passport for her departure next week. All in all we are doing ok!
Thanks for all your support!
Talk with you soon!
Shannon
Wednesday, June 15, 2005 2:18 PM PDT
Hi everyone,
Still me, Shannon, updating Javad's site. Today is the last day of school for me (thank goodness!). It has been hard managing sleeping at the hospital, then going to work in the morning. Adam and Simon left this morning to go spend the summer with their mom in Arizona (and other places.) Stesha leaves next week for Germany for three weeks. It will be quiet around the house without them all!
Tomorrow Javad goes in for his trach surgery. I was hoping to bu another day (mostly out of emotional pull...maybe it's not really going to happen!), but Dr. Cuyler called me today and said he wants to do it tomorrow at noon. He is going out of town this weekend and wants to make sure everything is okay. I appreciate that...he's our ENT of choice! :)
I am still struggling a little with the entire thing...although I have had incredible support from friends near and far. No one has told me I am crazy for taking pictures of Javad's neck. (thank goodness!) I will be taking those tonight.
Please keep us all in your prayers tomorrow (and in the next few days, weeks, etc.). This is going to be a change for us all.
Shannon
Sunday June 12, 2004 7:40 PM PDT
Hi everyone,
Well, we are still here at Emanuel. Things have taken a dramatic turn since I last updated. As I mentioned before, Javad had a bad episode on Monday. What I didn't find out until Thursday was how bad the episode really was. It appears that Javad was in a very critical place on Monday and that it lasted for 15 or more minutes. They have told us matter-of-factly that if Javad would have been at home or even out on the floor, he would not have made it! They feel that they were walking the line in the PICU. Very scary!
On Thursday, Dr. Nichols met with me and told me that the team feels very stongly that it is time to put a trach in Javad. This was quite the blow, considering all the progress we have made. They feel that the although the chance of this occurring again may be low, they did not want to take the chance again becuase he may not survive it. They feel very uncomfortable taking care of him without the trach. Basically, Thursday night I had a long break-down involving lots of crying and talking (thank god I had two of my dearest nurse friends, Denise and Tiffany to be my shoulders to cry on!). Friday, David and I talked with Dr. Nichols again and later I talked with Dr. Lindsay (the intensivist) about the situation.
We told them that although we logically can understand, we still need time emotionally to wrap our heads around this (I think this is mostly me, but I am sure that David is also having some time of it).
We told the kids today...Stesha is having a bit of a rough time with it, but the boys responded in typical boy fashion..ask a few questions, then "sounds good!:)
I am going to talk with them to see if we can put things off until Thursday. I don't get done with school until then and feel I can't multi-task anymore! Javad is growing something out of his line anyway, so it probably would be good to wait! (hopeful voice!)
Well, I hope Javad will be up to writing soon. We will be here for another two weeks or so!
Shannon
Wednesday June 8, 2005 2:05 PM
Well, here we are. Javad is doing a bit better today. His x-ray is improving (although we only had up to go from Monday!) He is pretty tired and worn out. I guess I would be too if I had the events from Monday. We are keeping him somewhat sedated (although that is not usual) mostly for comfort. Overall, things are looking more in the right direction. I don't think that we are going home anytime real soon. Please keep Javad in your thoughts.
Shannon
Monday June 6 11:53 M PDT
Shannon here! Well, just when I thought we were heading home, Javad had other ideas...This morning I got a call at work (two hours after I had left Javad) and he had coded in the PICU. It seems taht they gave him his treatment and when they were suctioning, neither they (or he) could get control of the massive amounts of secretions he was having. They had to call the code because he was having such a hard time. They ended up intubating him again and the x-ray from after the x-ray doesn't even look like the same lungs from earlier. The entire left side is socked in. I guess they couldn't bag and mask him...no air going into his lungs, everything went into his stomach. It was a real concern. The conversation hasn't immediately gone into the "big T", thank goodness. I am not sure that I am ready for this conversation. There were other suggestions and we are looking toward a solution for the long term (that hopefully doesn't involve the trach!). Javad is stable. He is really tired and we are medicating him to keep him comfortable. His heart rate is running high (170's) and we are not sure if he is hurting or just stressed. Well, I will update for Javad until he is feeling better enough to update for himself. Please keep our new friend, Oliver in your thoughts.
Shannon
Sunday, June 5, 2005 5:40 PM
Well, I faked everyone out again. Mommy thought we were leaving on Thursday (doesn't she know by now that she shouldn't talk about it?). Well, I am not quite feeling up to par. Now Mommy isn't talking about going home at all! Hmmmph! I think she's keeping it a secret so I don't mess things up!
Today, I was off the bipap for two total hours (one hour twice during the day!). The second time I was off without any oxygen! Mommy was pretty excited about this! They have been doing a CPT therapy called "The Vest" which fits around me like a vest (duh!) and then vibrates. It's ok, but I don't like that it shakes my head, so Mommy holds my head for me. Dr. Nichols (our pulmo) says that we are probably going to get one at home since I'm big enough to actually fit into the smallest vest now!
Mommy has been happy because I have lost some water weight (well, four pounds actually!) so I am back to 31 pounds. Whew! I feel lighter! I have grown really tall though (44 inches!) We are glad for the loss...I was REALLY puffy!
Well, we are hoping to get home before Adam and Simon leave for the summer to visit with their mom. That's on June 15th. I need to make sure to get all my snuggles and kisses in before that!
Talk to you soon!
Please keep my new friend, Oliver, in your prayers. He was recently diagnosed with leukemia (he's 7 months old) and is back in the hospital. His parents have only known he was sick for not even three weeks, so it is a lot to digest! He has a caringbridge site...from OR and his name is Oliver! You can put it together from there! :) Visit and leave a note!
Javad
Wednesday, June 1, 2005 9:42 AM PDT
Well, hopefully, we'll be going home in the next few days. It's been a long few weeks. I am really bored and ready to go home. It's been a bummer that Mommy hasn't been able to be there more because she has to work! :(
I will be ready to go home and see Stesha, Adam, and Simon (oh...Daddy too!). Simon was sick all last week, so I guess it was sorta good that I wasn't there.
Yesterday I did a trial off the bipap. I did pretty good. I was off for an hour in the morning and two hours in the afternoon. Mommy asked them to have me come off earlier in the afternoon so I wouldn't be so tired and I did great!
Mommy was telling me about a family she met downstairs. Their son has just been diagnosed with leukemia. If you want to visist them and leave a note, that would be great. They are from Oregon (or) and his name is Oliver!
Talk to you soon!
Next time I write, I hope to be at home!
Javad
Monday, May 23, 2005 3:40 PM PDT
Hi everyone,
Well, I am back in the hospital. Last Tuesday, I was not feeling well and after the whole day, Mommy called Dr. Nichols to havev me admitted. I had already seen him in the morning and he thought I sounded pretty crummy, but my x-ray looked pretty good and my gas was ok. By the afternoon, I was requiring oxygen and that's why Mommy called the dr. I was admitted into the PICU on Tuesday evening and spent the night, on Wednesday I went to the floor and by Thursday was back in the PICU, intubated. It seems that I have Parainfluenza type 3, which causes pneumonia. Moomy says it's kind of weird because my x-ray looks pretty good, but I have so much junk coming out of me. This is not the normal cycle, so I guess we're on a new learning curve!
I've been pretty bored. They don't really medicate me when I'm intubated, so I just lay there watching cartoons or movies. Mommy has to go to work, which bums me out, but she told me she is going to stay all day on Wednesday.
Today, Simon is also not feeling very well. Neither is Daddy. They are achy. Either they have the same thing as me or something different. (Duh! I guess that was kind of obvious!)
Well, I should go.
Please keep my friend Rachel Hansen from Minnesota (that's mn) in your prayers. She is struggling with this latest bout of cancer. Also keep Dylan Hartung in your thoughts (that's Dylan Hartung @ ME). He is waiting for the trial drug to be reaccepted.
Talk to you soon!
Javad
Sunday, May 8, 2005 8:39 PM PDT
Hi Everyone,
Well, things are going well here in Oregon. I have been "walking" around every day in my new chair. It's lot of fun! I have been feeling pretty good, but do have a head cold (or maybe allergies!), so my nose is runny. The trees are coming into bloom, so I am hoping for allergies!
The other day, Kristin (one of my nurses) and I walked to the park which is about a quarter of a mile away. I met another little boy and played in the swing. It was fun! I have been taking longer walking trips lately to get used to getting around by myself.
Today I went to Sunday School at church (my first time ever). My sister sang at chirch with the youth band and then she goes in and "teaches" the three and four year old class. I went into the class and the kids were curious why I was in my chair. Mommy told them that my mucles were weaker. They were fine with that. Most of the kids were really nice to me and played with me. My cousin, Dakota, is also in the same sunday school class. (She's only six weeks older than me.)
Mommy asked someone in charge if they could put a table in the class that is higher so I would be able to play better. It was hard bacuse everything was too short for me. I do want to point out that the church may be putting in an elevator. I know that they are doing this partly for me! My Mommy has gone to this church since she was a little girl and they have been praying for me since the beginning. They are pretty great people!
Anyway, I have been feeling pretty good. Please keep a few of my special friends in your prayers...
Dylan Hartung from Australia- He is in New York getting treatment for Neuroblastoma.
Rachel Hansen- She is having chemo and has been very sick!
Liam in Canada- He has Centronuclear Myopathy and his family needs our prayers.
All of these guys are linked through my personal website. The link for that is at the bottom. Please visit them and send them some love!
Thanks for coming to visit. Leave me a hug (or two) at the top of the page!
Happy Mothers Day to all the wonderful mothers out there!
Love to you all!
Javad
Monday, April 25, 2005 9:08 PM PDT
Hi Everyone...
Well, it's post Wiggles day 2! The Wiggles were AWESOME! We went to the meet and greet beforehand, and they were so great to me...
I "walked" up to meet them, and they gathered around me. Jeff held my hand (I tried to give him kisses.) and talked to me. Murray kept touching my shirt, and talked to me too. Anthony and Greg asked Mommy and Daddy questions about me. Mommy asked them if they remembered my friend, Mason (which they did) and we talked about us both.
After we talked (and took some pictures), Murray arranged for Mommy, Daddy and I to sit on the floor so I could see better. It was great. Mommy held me in her lap and we danced together. The Wiggles were great. At the end, they waved goodbye to us (Mommy was signing thank you) and as they drove away in their Big Red Car, Murray said "Goodbye Javad!"
I was really exhausted after the big day, but it was totally worth it!
On Sunday, I took my chair to church to watch Simon in a play. It was very exciting. Everyone was pretty thrilled as I "ran" around the church. Mommy had to get Adam to come and get me once because I was wandering off on my own. Ahhh, the freedom. It's the best the be three and free!
Well, I must go to sleep. I am still tired from my busy weekend!
Talk to you soon!
Javad
Friday, April 22, 2005 10:40 AM PDT
Hi Everyone,
Well, tomorrow is the big day! THE WIGGLES CONCERT!!
I am so excited. Mommy and I have been talking about it for weeks. Daddy has decided to go with us! I am really excited about that too!
At 1:30, we need to be at the Rose Garden and we are going to the meet and greet. That means we get to go backstage before the show and meet the Wiggles. My friend, Mason, got to meet them in Sacramento and Mommy read his Dad's letter. They said it was a really great experience. I hope that it will be just as fun for me.
I will have Mommy put pictures up on the site after we get home.
Please continue to eep my friend, Liam, in your prayers. We haven't heard from his parents in awhile. We continue to pray that they are all doing okay.
Look forward to the pictures tomorrow!
Javad
Saturday, April 16, 2005 12:36 AM PDT
HI everyone!
Boy, I have had a great week! On Thursday, Lena left to go back to Germany. Stesha was really sad to see her go, although she gets to go visit in two months. BUT I have to tell you the best time I had. Mommy and Daddy took me to the airport with my new limo. I got to drive around in wide open spaces. This was the first time I had taken the new limo out in public and the neatest thing was that Daddy let me drive on speed 4! I zoomed through airport! It was GREAT! I was happy and smiling the whole time!
After we left the airport, we went to Grami and Papa's for our Thursday night dinner and Survivor watching. We took the new limo there too! I was the first time that Papa had seen me drive and Grami had only seen me a bit. Grama and Grandpa were also there and they were pretty excited to see me drive too!
All in all it's been a great week. I am having a little problem sleeping. Everyonr thinks that it's be cause I am still taking Prednisone. Hopefully that will go away in May when we see Dr. Nichols!
Please keep my friends, Dylan and Liam in your thoughts. Dylan is at Sloan Kettering and Liam, who has been diagnosed with Centronuclear Myopathy too. His parents are needing lots of support and prayers.
Talk to you soon!
Javad
Sunday, April 10, 2005 8:16 PM PDT
Hi everyone,
Well, things are going really well! I have been feeling great and very happy! Every day is new and exciting. I have been using my stander for over an hour almost every day and driving in my chair as much as possible. I really like going outside on the deck. We have two ducks that come to our pond and I really like watching them! Mommy said she wants to make the deck bigger so I can drive outside more!
Lena is still visiting. She and Stesha went to the prom this last weekend with some of Stesha's friends. They had a good time. They looked really pretty. I think Mommy might put some pictures up soon. Stesha will be really sad when Lena leaves on Thursday. It has gone by really fast. I had better start kissing her now. I don't know when I might see her again!
Adam and Simon are doing really well too. Adam is running really well in track. He has broken his PR and is running both the 1500 and 3000 now. Mommy hasn't gotten to see him which makes her sad. She hopes to go see one soon.
Mommy is taking the second term of her class. She is planning on taking German in the summer, then the second two terms next year. Next March, she is applying for the Doctorate Program in Education. Then we'll all have to call her Doc! lol
Daddy is doing great too! He is working hard and keeping busy!
Well, I am going to go. Please keep my friend Dylan in your thoughts. He's in New York getting treatment. Also keep Remi in your thoughts. He lives in Germany and has been in the hospital for 4 weeks with pneumonia!
Talk to you soon!
Javad
Sunday, April 3, 2005 9:45 PM PDT
HI everyone,
Well, things have been going well at home. I am slowly getting stronger, although I am still weaker than usual. I have been standing in my stander every day and driving like a madman! I love the freedom of my chair! Mommy and Daddy just got a lift that attaches to Mommy's car. Now we can take my chair anywhere! Mommy says that we are going to the zoo soon! Yeah!
Everyone around here is doing well. Stesha and Lena are having a fun time. They talk and laugh all the time! It's nice to see Stesha happy!
Well, sorry to make it so short. Please keep my friend, Liam, in your prayers. He has a site on caringrbidge too. He lives in Canada and was diagnosed with Centronuclear Myopathy a few weeks ago. Anyway, his mom is in Vancouver and his dad at their house four hours away. It's really hard on them.
Please leave me a message in my guestbook!
Javad
Thursday March 31, 2005 10:29 PM PST
Hi everyone,
Happy almost APRIL FOOL's! Ha! Ha! Things are going pretty well here. I am slowly getting stronger. Today I played basketball using my new chair and two laundry baskets. I had a great time!
My sister, Stesha, and our exchange student, Lena, are having a great time. It's like Stesha is having a three week sleepover. Mommy says its nice to hear Stesha laugh!
Adam is running track again this year. Today he ran both the 1500 and the 3000. He felt pretty good, but very tired!
Simon and I hang out a lot. He is working hard at school!
Mommy is working hard. The grading period is coming up so she says the kids are crazy!
Well, please keep my friend, Liam, from Canada, who has a caringbridge site (hint. hint.) in your prayers. His parents are facing some hard stuff!
Talk to you soon!
Javad
Saturday, March 26, 2005 8:56 PM PST
HAPPY EASTER!
Things are going really well at our end of the universe. Easter is tomorrow and we are going to church to have Easter breakfast. Yum! (Well, I won't eat anything, but Mommy. Daddy and the rest of the kids will enjoy!)
On Thursday, our exchange student, Lena, arrived from Germany. She is staying with us for three weeks and Stesha will go and stay with her family for three weeks in the summer. SHe is very nice. She smiles and waves at me when I am near her!
Everyone in our family is doing well. I am feeling better, although I am still feeling weak. Mommy and Daddy worry because I can't sit like I used to and have a hard time. We know that it will get better with time, but its hard!
Mommy is getting the lift on our car soon. That means I'll be able to take my new limo places. I am so excited! Very soon I will get MY REAL new limo, not just the loaner! It's black and shiny! :)
Well, I need to go. Please keep my new friend, Liam, and his family in your prayers. He was just diagnosed with Centronuclear Myopathy and his family are feeling very overwhelmed. You can go to his site from my personal site. ALso, keep Dylan in your prayers. He is doing well in New York, but misses his family in Australia and hasn't been feeling well. His site is also linked from my personal page!
Love to all!
Javad
Monday, March 21, 2005 12:16 AM PST
Hi everyone,
Things have been going well this week. I am feeling a little goofy, mostly I think its from the Prednisone. It also makes it hard for me to sleep. I haven't been taking a nap or I take a really short onr, then I am either going to sleep late or waking up early. Thiw morning, I woke up at 4:30. Daddy woke up with me, them after a while, Mommy played with me. I had a pretty good day. Still trying to get stronger. I drove my chair for 15 minutes and stood in the stander for 1/2 hour! I am making progress.
Well, sorry to make it short, but its late.
Please check out my personal page. There is a link at the bottom of this page. Also don't forget to leave me a message!
Javad
Thursday, March 17, 2005 10:26 PM PST
Hi everyone,
Well, things are doing better. I am feeling better. On Monday and Tuesday, I was scaring everyone a bit. I kept desatting and sounded really crummy. Mommy and Tiffany (my nurse for the day) took me to Emanuel to get an x-ray and nlood gas. They were surprised that my gas was so great, but my x-ray was not so great. I have been getting better every day, so the general agreement is that my bi-pap wasn't humidifying on SUnday night, and I had "glue" in my lungs. Anyway, I have been feeling better all the time. Slowly, but surely!
Well, this next week, we are having our exchange student from Germany, (Well, Stesha is having her student). It will be fun!
Sorry to make it so short, but I will write again soon!
Love to all,
Javad
PS Happy St. Patrick's Day! I am sure my GramPatti is dancing in heaven on this her favorite day (The day we are all Irish!)
Monday, March 14, 2005 5:12 PM CST
Well, I am home. I am feeling a bit better, but not all together well. I am still a bit feverish and my tummy is not feeling the best. Mommy thnk I am just fighting the same bug as before. Hopefully I will feel better soon!
Javad
Tuesday, March 8, 2005
Hi everyone,
Well, I am back at my home away from home (Emanuel). Yesterday, Mommy and Michelle (my nurse) took me into the emergency room because my heart rate was between 160 and 200. Normal for me is around 110 and all the way into the 70's when I am sleeping. Anyway, the doctors were really nice. The one who took care of me in the ER was half Irani, like me, except he ad really light hair and blue eyes. My mom thought that was kinda weird, but anyway.
They all decided that I should go up to the PICU, mostly because I have a history of respiratory issues. I slept pretty well last night and the doctors think that we may have caught whatever is going on really fast. I slept on my bipap, but this morning I was needing a little more oxygen and my co2 levels were a little higher. Mommy just talked to them at the hospital and they have decided to keep me in the PICU for today (and probably tonight).
Oh...my Aunt Sue said I should explain what pseudomonas is. It is a bacteria that causes pneumonia. It's pretty bad. I have had this kind of pneumonia more than once, so I have colonized pseudomonas. This means it is always in my lungs. If I start getting sick, it can grow faster than normal. Bummer!
Anyway, please continue to keep the others in your thoughts. I'll talk to you soon!
Javad
Thursday, March 3, 2005
Hi everyone!
Well, things are going pretty well here. I have been home for two weeks and am still getting my strength back. I have been driving around the house and love going outside on the deck. It's been really nice weather here, so it's sunny when I go outside! I love it. I have also been going on walks, well, I ride in my limo (stroller) with the nurses. Everyone is pretty busy around here. Adam is doing a play this weekend. I don't get to go. The ticket says it's only for kids over 10. If you add my age up four times, I would be older than 10. I don't think that's very fair. I am really quiet, don't talk, and don't cry! I think I should be able to go! WHAT DO YOU THINK? Stesha is starting Lacrosse. She is having to take it slow because she hurt her ankle really bad on Halloween and she is still trying to get better. It has been a long and frustrating time for her. Keep her in your thoughts that she gets better soon! Simon was part of a chess tournament awhile ago. He really likes chess. I know he had a great time! My mommy is taking a class at Portland State University. It's a math class called Calculus. She says she might go back and get another degree. Daddy has been working hard at his job. Today he was out of town, so I was glad to see him when he got home!
My Papa (grampa) just got back from a long trip out of the country. He was in Patagonia and Chile. I am glad that he got home safely. My cousin, Dakota, has been really sick. Please keep her in your thoughts. Grami has been doing pretty well. Sometimes she's still tired from her surgery in December. My Auntie Megan, has graduated from college and is substituting at the elementary school right near Mommy.
Please keep me in your thoughts. Mommy and Daddy think I am growing pseudomonas in my lungs. They are hoping to get the medicine to treat me at home, Mommy, Stesha, and a few kids (and me) are supposed to go to Idaho for Bible Quizzing, but we'll see how I feel!
Anyway, I should go. Please continue to keep Baby Jacob's mom, Angela, and sister, Alyssa, in your prayers. They have had a really hard time since Baby Jacob got his angel wings. You can leave her a message on his site www.caringbridge.org/canada/babyjacob. Also keep Jacob, in Florida, in your thoughts. He has been sick. His site is www.caringbridge.org/fl/jacobdylan. Finally, Dylan Hartung from Australia, is fighting neuroblastoma at Sloan-Kettering. To drop him a note of support, go to www.caringbridge.com/me/dylanhartung.
Thanks for stopping by to see me. Please leave me a note to let me know you were here!
Javad
Sunday, February 20, 2005 7:34 PM PST
Hi everyone,
It's Shannon. It is with a heavy heart that I tell of the passing of one of my favorite Caringbridge boys, Baby Jacob. Please stop by his page and send his mother, Angela, a message of love and hope. She worked tirelessly to give Jacob, a boy with SMA, a wonderful quality of life. It's never easy to lose a child. Please keep Angela, her daughter, Alyssa, and all those who loved Jacob dearly, in your prayers.
Shannon
Visit Jacob's page at www.caringbridge.org/canada/babyjacob
Saturday February 19, 2005 10:27 PM PST
Hi everyone,
Well, I am feeling much better. I feel pretty weak, but am really glad to be home! I am feeling a little weird since being in the hospital. My mom says that she thinks it might be because of the steroids I have been on. They kind of make me feel funny. Sometime I feel a little spacey!
Today I drove my wheelchair for the first time since being home. It was great! I had such a great time!
Anyway, things are good. I am getting better every day. Thank you for keeping me in your thoughts.
Javad
Wednesday, February 16, 2005 9:43 PM PST
Hi everyone,
I am home. I am feeling better. Thanks for checking up on me. I'll write more later!
Javad
Tuesday, February 8, 2005 12:38 PM PST
Hi everyone,
It's Shannon again. Javad is still in the PICU, but doing really well! Everyone is very impressed at how strong Javad is! He came off the vent yesterday and is hanging out on bi-pap. They are talking about moving him out of the PICU in a day or two and to the floor. We'll see how it goes. Generally he is in good spirits although I think the novelty of watching TV all day long is wearing off! He loves Finding Nemo and Monsters Inc, but I suppose that gets tiring after awhile when you can't hardly move around!
Overall things are getting better! We are encouraged!
Thanks for all your thoughts!
Shannon
Thursday, February 3, 2005 4:22 PM PST
Hi everyone...it's Shannon.
Javad has been in the hospital with a left lung pneumonia. He is doing pretty well, but he has been intubated all week. His mood is pretty good (although sometimes grouchy!) I guess there have been a bunch a bugs going around and those who have respiratory issues have been hit hard!
Anyway, keep the little man in your thoughts. Please keep our friend Jack and is mom, Jessica in your thoughts too. They have both been sick and Jack is also in the hospital!
Talk to you soon!
Shannon
Tuesday, January 25, 2005 10:15 AM PST
Look out everyone...here I come!
Yes, I am a wild man on my new Limo. What can I say? I am an excellent driver. I can drive into my Mommy and Daddy's room. I can drive into the bathroom and turn around and come back out. I can drive into Simon's room. I can't go down to Adam and Stesha's room because of the way our house is, but I love driving anyway! I can watch cartoons from up close and personal! It's great!
Things have been going really well. I feel really good and continue to grow. I weigh almost 30 pounds. Mommy can't believe that last year at this time, I only weighed twenty-something pounds. What a difference a year makes.
Everyone is doing really good at my house. The weather has been really nice. Mommy says it's hard to believe that it's winter. It's in the sixties here. I feel bad for the people that have a ton of snow!
Well, talk to you soon! Please leave me a message in my guestbook!
Javad
PS Please keep Mommy's friends Lisa, Fred, and Carolyn in your prayers. They lost their wonderful son/grandson Austin. Remember to hug those you love.
Friday, January 7, 2005 18:27 PM PST
Hey everyone,
Well, today was the big day....WHEELCHAIR FITTING! Yes, I am the man with power...I have the need for speed. Okay, maybe that's a bit dramatic!
Mommy took me up to Shriner's to get fitten for my chair. Now, remember, the insurance wants me to have this "loaner" chair for a few months to prove that I can really drive (Duh! I can!) and prove that it really make a difference in my life (Duh! I will be free to go where I want!).
Anyway, I was fitted so that the chair works for me. I immediately wanted to drive, but had to be patient for what seemed like a LONG time! Finally I got to drive. (yeah!) They had my chair (Now called the Big Limo!) on a super slow speed. THe guys that were in charge must have recognized that men have a need for speed so they changed it so I could go FASTER!!! I was so excited that I started driving around..FAST! Well, I got a little carried away and ran into a stool that had one of their tool boxes on it! The tools went EVERYWHERE! Mommy and the men decided that I didn't need quite that much speed, so they slowede me down. I did much better after that. I did hear them say that I will get more speed once I can drive better and can control the Big Limo better! Okay...I can wait!
Well, tonight we are getting a little snow. Maybe it will still be there tomorrow morning so I can go out and play with it.
Please continue to keep my CB friends in your prayers.
Dan: www.caringbridge.org/dc/dan
Dylan: www.caringbridge.org/me/dylanhartung
Baby Jacob: www.caringbridge.org/canada/babyjacob
Have a wonderful weekend. Stay safe!
Much love,
Javad
Monday, January 3, 2005 7:35 PM PST
Happy New Year!
This year has started out GREAT! My Uncle Majid from Los Angeles came to visit us last weekend and we had a great time. My mommy took a picture of him to put on my wall so I can remember his face when he comes next time! I am feeling really good and continue to get stronger. My brothers, Adam and Simon, came home on saturday and I was really happy to see them!
Mommy and all the other kids started back to school today. I think I heard them grumbling this morning! I slept great and didn't wake up until 9am. Of course, then I didn't nap until 4:30. Mommy came and woke me up and told me something about getting me back on a better schedule! I don't know why she thinkgs that my schedule isn't working! :)
Daddy has been working hard. He works from home now, so I get to see him during the day. It's pretty cool!
The biggest thing going on right now is that I am getting my power chair on friday. Our house still isn't accessible yet. I am not sure what Mommy and Daddy are going to do. I know they are excited...we'll see!
There are some kids that Mommy wants you to keep in your thoughts. They are friends through the caringbridge family! Please stop by their sites and lend them some good wishes.
Dylan lives in Australia and has cancer. His parents are trying to raise the funds for him to come to the US. Visit him at www.caringbridge.org/me/dylanhartung.
Kyle, my friend with Myoptubular Myopathy, has been sick this month a lot. Please visit him at www.caringbridge.org/md/kylespage.
Jack, my friend with MTM in Australia, has not been feeling well. Please visit him at www.caringbridge.org/oceania/jack.
Also keep Rachel in your prayers...they found that she has more tumors. Visit her page at www.caringbridge.org/mn/rachelhansen.
Finally, Dan is fighting cancer. Please visit his page at www.caringbridge.org/dc/dan.
Hope 2005 is a wonderful and healthy year for everyone...me included. Thank you for keeping these friends in your prayers.
Well, I will talk to you soon!
Javad
Friday, December 24, 2004 11:01 PM PST
Merry Christmas (Eve!)!
How far we have some! I look back on the last three years and I can't believe where we have been and where it appears we are going. Javad's first Christmas was spent holding a still boy and now we have a boy who is "dancing" and smiling and laughing. God has truly blessed us. We feel blessed by all those around us who have supported our family, love Javad, and prayed for us through all the rough times.
On this night of nights when we celebrate the birth of that babe so long ago, I thank God for keeping Javad safe these past three years. What a gift!
Please keep those families in prayers who are experiencing their first Christmas without their children or other loved ones. May God bless you and your family this holiday season.
David, Shannon, Adam, Stesha, Simon, and Javad Mashinchi
Christmas 2004
Sunday, December 19, 2004 7:22 PM PST
Hi everyone,
Well, there is only a week until Christmas (or at least that what Mommy says). Tonight, it was so exciting...driving down the street near our house were all the fire engines (with their lights and sirens going) and Santa was on the top of one of them.) I was really scared until they went by, then I wanted them to come back. Mommy and I waited for awhile, but they didn't come back. Mommy said that we might go see Santa at the mall and maybe even get a picture.
Well, not much to say. Mommy is going to put a picture of our family on the photos page. THis way you can see everyone.
Talk to you soon!
Javad
Wednesday, December 8, 2004 2:42 PM PST
Well, this has been a good week at our house. Stesha's birthday was yesterday. She told me she had a really good day. She was really ahppy when she came home. Her boyfriend, Seth, had sent her flowers at school and Mommy and Daddy had gotten her two books on the Beatles and a Tinkerbell sweatshirt (she loves Tinkerbell!). She was soo happy!
I have been practicing driving my driving at Shriner's. Last week I tok the elevator to the top floor where the play structure is. I drove to the top of the play structure, signed that I wanted to slide down the slide, then got to slide! It was fun!
It looks like I am going to get a chair on loan for a few months (to prove to the insurance that I can really drive!) then I will get my own chair. Everyone is really excited about it(especially me!). Mommy and Daddy are working to get the house ready so I will be able to terrorize everyone like the average 3 year old! (OK, maybe they aren't all excited about that, but I am!)
The holiday season is coming up on us. Hug your family and tell those around you that you care.
Talk to you soon!
Javad
Well, thanks for stopping by.
Monday, November 30, 2004 10:41 PM PST
Hi everyone,
Things are going well in our house! This last weekend our whole family went up to Seattle for two days so my mom could walk the Seattle Marathon. It is her second marathon in two months. I got to hang out with my dad, Adam, Stesha, and Simon. It was pretty cool. Mostly we just hung out in the hotel and called Mommy ocasionally to see where she was!
Overall, I am feeling pretty good. I had a little head cold last week, but I seem to be shaking it off! Simon has a bit of a cold and Stesha wasn't feeling well today either! Pretty much everything just goes around and around! Mommy keeps saying that we need to break the cycle!
Thanksgiving was good. We went to Grami and Papa's. I played with Dakota (my cousin) and that was fun. I am getting better at letting her play with me. It has been a long road, but I am working on it!
Well, it is late and I should go to sleep!
Javad
PS Continue to pray for Baby Jacob. He is home, but still sick! www.caringbridge.org/canada/babyjacob.
Thursday, November 25, 2004 7:13 PM PST
Happy Thanksgiving!
This is Shannon and I felt that on this day, I should take over the journal (oh...and because Javad is snoozing away!) Today is Thanksgiving, the day to reflect on so many things. How far we have come in three years!
I remember Thanksgiving three years ago. Javad came home the day before from the hospital after spending three weeks in the NICU. (How niave we were!) We were so excited to have him home. THere I was at the family dinner, holding this baby who did not move...we were so determined that he would get stronger. We did not know what we were in for. We rejoiced about every small move he made, a finger, a blink. My niece was there, six weeks older, moving around. It was hard not to compare.
Every year, Javad has gotten stronger. We have rejoiced in his improvement! Here we are three years later and Javad was sitting in a booster chair at the table playing with his food (ok...it would have been great if he would have eaten some food, but we'll take playing with his food!)
I am so thankful for so many things! I am thankful for Javad's health, I am thankful for so many things. All our children are healthy and Javad continues to improve every day, David and I have a wonderful relationship and I feel blessed.
This year has been difficult, with the death of my mother and Javad's four month stint in the hospital, made the year a long one, but I feel that we have come through it all with shining hope.
Please continue to keep all those who do not have their health in you prayers. Baby Jacob in Canada is still very ill and many others who we have met through the Caringbridge family have lost children and this is their first holiday without them. My heart breaks for them in a way I can never describe.
Hug your family, kiss you children, love your parents, and grandparents, and all those you love.
Have a blessed holiday now and into the months to come.
Shannon
Saturday, November 20, 2004 5:36 PM PST
Hi everyone!
Well, this week has been another good one! Last weekend we went to the beach (I already told yoou about that.) I have been feeling tired and a bit cranky! I think its teeth.
Anyway, Mommy has been busy with work and Daddy was in Seattle for part of the week. It's always crazy when Daddy is gone. There's just a bunch of kids to get to a lot of places. :)
This week at Shriners, I drove all over the place. It was fun. I went up to the play deck and down to the first floor. It was exciting! Mommy had to keep ewminding me to pay attention. I was looking at all the people and pictures! After driving, I had to go get my AFO's fit (ankle, foot orthotics). They were too small so I had to get recasted (which I didn't like!) I'll get new ones in a few weeks! THey will help me hold my feet straight.
One more week and it's Thanksgiving! My family and I are Thankful for so many things, including you!
Talk to you soon!
Javad
PS. Please continue to keep Baby Jacob in your prayers. He is VERY sick! Visit his website at www.caringbridge.org/canada/babyjacob.
Sunday, November 14, 2004 11:03 AM PST
Hi Everyone,
Well, this has been quite the weekend! On friday, Mommy and Daddy packed up a trailer, put all of us in the car, and off we went to Grama and Grampa's beach house. Mommy has been talking about going to the beach for some time, so she was pretty excited! Michelle (one of my nurses) also came with us.
So we didn't really do much (which was exactly what Mommy wanted. The family watched the original Star Wars trio (Mommy told the kids- including me- how that was really high tech when she first saw it!) and played Yu-Gi-Oh! (Well, Adam and Simon!)
We slept in and ate yummy food! All in all it was a great time! I slept until 11 am this morning so I was feeling pretty good.
THe only bummer is that when we got home my bi-pap wasn't working, so I guess Mommy will give me a treatment, then go to bed. Oooh! Maybe I'll get to sleep with her tonight! :)
Well, hope everyone is doing well. Please keep Baby Jacob, who lives in Canada, in your prayers. He has SMA and has been very sick!His Mommy is working hard and is very tired! Mommy relates and knows how she feels. If you want to visit him, his site is www.caringbridge.org/canada/babyjacob.
Talk to you soon!
Javad
Wednesday, November 10, 2004 10:30 PM PST
Hi everyone!
I am still leaving my Mommy's note from my birthday on the bottom. Sometimes it's good for me to remember how far I've come! This past week has been pretty good. I have been feeling okay although there has been a cold flying around our house! Stesha still has a sore ankle and whe's been using crutches for almost two weeks. It makes me sad that she is so sore! Adam has been running to keep in shape and Simon...well, he's been Simon!
I have been working on eating more. Well, don't get excited, I am not really eating, but I am sitting down and having "breakfast." I sit down with a waffle and peanut butter, then I watch cartoons and play with the food. I know that Mommy and Daddy hope that I will start eating again. Slowly...I will.
I have been going to therapy. Kim (my PT) and I had a great time playing today. She has a really big swing that I went on. I also played with pegs and puzzles.
Today I also went to Shriners to see Mira, my speech therapist. I have been working on my nre computer with her. After the beginning of the yeat, we may order one for me. I can make it say all sorts of things. Today I kept telling her to "read a comic book." It was funny because there are no comic books, but we read a funny book about giraffes!
Anyway, things are going along. We are going to the beach this weekend to relax, have family time, and have fun! Talk to you next week!
Love ya!
Javad
Monday, November 1, 2004
Hi Everyone...this is Shannon. Today is Javad's 3rd birthday. It is hard to believe that it has only been three years, but on the other hand, I can't believe it's already been three years.
Three years ago, David and I packed our car, ready togo to the hospital for a scheduled c-section. Stesha and my parents were there, ready to welcome our new child. We had not found out the sex of our child, although suspected that we were having a boy once David's father had passed away in July. We had decided that if we had a boy we would name him in the honor of both of our fathers, Javad (David's father) David (my father) Baradaran Mashinchi. Baradaran means brotherhood. I wanted our child's name to reflect his rich heritage; a father from Iran who has Turkish and Russian in his background and a mother who is a variety of nationalities including Irish, German, and Dutch. We felt that his name would be strong and hold him well.
Everything went well in the beginning...we were all happy and anxiously awaiting the arrival of this beautiful child, one we had not planned, but felt would complete our family. The c-section went well, I was joking with the doctors about a get-rich proposition of a c-section/ liposuction combination. I told them it was a real untapped area of medicine! Once Javad was born, they told me he was a boy, but I never heard him cry. I asked what was wrong and David told me that they were giving him some oxygen. Since my niece had needed some oxygen after birth just six weeks before, I wasn't really worried, but it seemed to go on for a long time, until finally they decided to take him to the level 2 nursery. I asked to hold him, and they let me for about 30 seconds before whisking him away.
The hospital that he was born at wasn't prepared for a child with any serious illness. They had him on monitors and my husband kept going back and forth between Javad and my room. I really didn't know the extent of his issues until almost 12 hours later when I insisted on seeing him. David loaded me onto a wheelchair and took me to the nursery. He was beautiful. It was almost like looking at a doll. If you have ever seen a baby that doesn't move, that was Javad.
They were taking wonderful care of him, but monitoring him very closely. The next day, the decision was made to take him to Emanuel Hospital, where there was a NICU that was equipped to handle him. Now, I am grateful that he was not born at Emanuel. He probably would have been put on a ventilator at the beginning and our life may have been totally different.
Emanuel was wonderful. He was in the NICU for three weeks when I insisted that we should be able to take him home. How naive I was! Anyway, the rest is history.
Javad has continued to amaze us with he tenaciousness, strength, and strong spirit. He has wise eyes that seem to tell a story. We consider him a gift every day. We are blessed by having him a part of our family and our lives!
Thank you for checking in on our little man. Please continue to leave us messages. We love to check them and know that you continue to keep us in your prayers!
David, Shannon, Adam, Stesha, Simon, and, of course, Javad
Tuesday, October 26, 2004 2:06 PM PDT
Hi Everyone!
Well, this past weekend we went to Nampa Idaho for a Bible Quiz Meet for the big kids. It was a really long drive. I had to spend almost 10 hours in my car seat (well, Mommy did take me out when we stopped). I was pretty tired!
We had a good day on Saturday. All of the big kids had a good time quizzing. I got to hang out with Daddy the whoe day. That's my favorite thing! On saturday afternoon the big kids went bowling. I don't know how much bowling they did, but they seemed to have a good time! I think they were hanging around their friends a lot! :)
Adam is running in the district cross country meet on Wednesday. I'll be cheering for him from home! Stesha continues to ref for soccer and Simon will be starting piano lessons soon!
Please keep my friend, Kyle, in your prayers! He is in the hospital.
Talk to you soon. Next Monday is my 3rd birthday! I am excited!
Javad
Wednesday, October 20, 2004 8:33 PM PDT
Hi everyone!
Well, things continue to go well here. I went to Shriner's last week and they told my Mommy that according to the DEXA Scan, I have grown 23 ew bone since January! Yipee! They also weighted me and I weigh about 27 pounds. I am catching up with everyone else! :) Mommy and Daddy say that I am really starting to look like a healthy boy. Yeah!
Today I went to Shriners to work on my wheelchair training. Basically I just drive around for an hour to practice. Today, I was the typical three year old...not wanting to listen, driving over stuff they put on the floor, saying no to Mommy. It was such fun. I love being to drive around on my own. I love being able to make all kinds of choices.
This weekend we are going on a family trip. The big kids are involved in Bible Quizzing with the youth group. THe first meet is in Idaho near Boise. It's a lot of fun to go on those trips. This year we have quite a few kids going. It will be fun!
Well, it's almost bedtime so I should go. Please leave me a message if you stop by. I love knowing who came.
Love, Javad
Saturday, October 16, 2004 11:00 AM PDT
Hi everyone,
Well, I have heard that I need to update my journal more often. I am sorry that I haven't been more up-to-date.
Things have been going really well lately. I have been growing and getting stronger every day. I have gained about a pound (amazing!) and have grown longer.
I am looking forward to getting my new power limo (power chair) in December. Mommy and Daddy have been working hard to get our house ready. THey have to find a way for me to get into the house and then hopefully put in stuff on the floor to make it easier to drive. It's very exciting.
Today I went up to Shriner's hospital to see Dr. Steiner (the metabolic dr). He told Mommy that I have grown 23% more bone since January. He was very pleased. I have been getting the pamidronate every two months to help with my bone density. Mommy was hoping to hear that it hadn't gotten worse, but was very surprised to hear of the growth! Dr. Steiner says I am doing so well, I don't need to come see hm for a year!
The big kids are doing really well. Adam has been doing great in Cross Country, Stesha has been refereeing soccer on the weekends, and Simon has been doing well in band!
Anyway, I will try to update more often. Please keep some of my firnds in your prayers:
Baby Jacob (www.caringbridge.org/canada/babyjacob) has been very sick.
Shelby (www2.caringbridge.org/ga/shelbyprescott) has received some very bad news. Her family needs prayer for a miracle!
Talk to you soon!
Javad
Wednesday, October 6, 2004 8:08 PM PDT
Hi everyone,
Well, lst week I went into the hospital to get a new port. I am happy to say that I came through it swimmingly! I was only in the hospital for the planned three days! Yipee! While I was in the hospital I also got my pamidronate for my bones. On October 15, I get a DEXA scan (kind of like an x-ray. It's a bone scan to show the density of my bones.) to see if the osteoporosis has stabilized. Hopefully, they will see that my bones are getting stronger!
My mom has been giving me a nutritional suuplement in my milk and boy have I been feeling great! My muscles seem stronger and I am happy all the time! It's great!
Last weekend my mom and two of her friends did the Portland Marathos. Yes, they went the entire 26.2 miles! Whew! Mommy said her feet were sore, her hips hurt, and she had blisters, but I think she is considering doing the Seattle Marathon in November. She must be crazy!
Well, the big kids are doing well. Stesha has been sick. Mommy and Daddy found out that she has had strep for the month and was not on medication. She has been home the last few daysnot feeling well. I think that she is finally getting better! Yeah! Adam has been doing really well in cross country. He is having meets all over lately, but running better than last year. Simon has decided to take up the trumpet. He is really excited about learning a new thing!
Well, I should going. I am really sleepy!
Talk to you soon!
Javad
Monday, September 27, 2004 7:50 PM PDT
Hi everyone,
Well, this has been a very good week! I am feeling good and getting stronger every day! Tomorrow I am going to Shriners Hospital to get fitted for my Power Limo(wheelchair)! I am excited (and so is everyone else!)
On a bit of a down note, last week when I went to physical therapy Kim said that my feet weren't stretching as well as she'd like. Sooooo, she put on casts on each foot that she'll replace each week for a month or so.
Anyway, on Thursday I am going into Emanuel (the hospital) to have my port replaced. They had to take the last one out when I was in the hospital becasue it got infected. Every two months I need to get a medication via IV so the port is very helfpul! I hate getting poked all the time. This way I only need to get poked one time! Yipee!
Well, I will talk to you soon! Please leave me a message to let me know that you've stopped by!
Javad
Wednesday, September 22, 2004 7:05 PM PDT
Hi Everyone,
Things have been going pretty well lately! I am growing (I have grown 2 inches) and have gained almost a pound! Yipee! I am almost loking "chunky" (Ha! Ha!). Today I had cast put on both feet because when I was in the hospital my achilles tendon got really tight and I can't flex my foot properly! Kim, my physical therapist, thinks that the casts will help streych me. I will have to come in every week for awhile and get new ones put on! It's kinda cool...they are almost like boots!
Next week I go with Mommy to get fitted for my wheelchair. We are so excited! Once I am fitted, it takes about six months to get my chair. Mommy and Daddy will use that time to get our house wheelchair ready.
My brothers and sister have been busy! School started in Seotember. Adam and Stesha are in high school and Simon is in 6th grade. Adam is running cross country and doing really well! I heard him say he took 2 minutes of his best time last week! Wow! Stesha is playing Lacrosse. Simon is going to start playing the trumpet.
Well, I will talk to you later. Leave me a note on my guestbook!
Javad
PS My sister and my mom started a new group on yahoo that is for siblings of kids with chronic illness or disabilities. If you want to join or know someone who wants to join go to subscribe-sib2sib@yahoogroups.com.
Thursday, September 16, 2004 12:13 AM PDT
Hi everyone!
Although I am sleeping right now, I told Mommy what I wanted to say. I have been doing really well these last few days. Last week I was in the hospital because I was having some bleeding in my mouth. They never found out what the problem was, but did find out that I was growing pseudomonas. So, I am on Cipro (which makes my tummy upset, but kills the bad stuff!) for about 10 days! I feel better each day. I am growing too. Mommy weighed me tonight and I think I weigh 26 pounds! Yeah! Another pound! Mommy keeps complaining that I am getting heavy! Ha! Ha! Today I went up to Shriner's and got to do my wheelchair training. I had such a good time. I was laughing and smiling almost the whole time (except when I ran into that door!). Mommy kept telling me what a good driver I was and I kept giving her the "thumbs up" sign!
Anyway, I'll give you more new later!
Please keep my friend Jacob and his family in your thoughts. They love in Florida and we hope they are safe and sound!
Javad
Friday, September 3, 2004 11:17 PM PDT
Hi everyone,
Well, this has been a bit of a hard week. Matthew's passing last wek has really been difficult on Mommy. She thinks about him and his family all the time. I haven't been feeling very good. I have had an ear infection for over a week and the antibiotics didn't help. The infection moved down to my lungs so I have sounded and felt pretty crummy for a few days. I think the newer and stronger antibiotics are finally helping. I don't have a runny nose, mouth and ear!
Today we had my appointment up at Shriner's. Mommy and Daddy are pretty excited because Shriner's feels I am ready for my own power chair! I have been doing driving practice and it's like I was born to drive! It's great! They gave Mommy the results of my genetic tests and feel it is a type of Centronuclear Myopathy that they can't test for yet. Mommy felt a little bummed, but oh well!
Anyway, I am pretty tired so I'll talk to you soon!
Please continue to keep Matthew's Mommy. Daddy. and brother, Nicky in your thoughts. Also all the people that cared for him and loved him. They are all missing him horribly!
Talk to you soon!
Javad
Saturday, August 28, 2004 4:44 PM PDT
Hi everyone,
Please be thinking about my Mommy's friends from South Africa, Alistar and Janice. Their son (and my friend), Matthew, who has the same diagnosis as I do, passed away suddenly on Friday, August 27. Mommy and I are very saddened by his death, but know that he is dancing in heaven breathing the wonderful air, ventilator free!
We will miss you Matthew!
Javad
PS If you want to leave his Mom and Dad a note you can find his site at www.caringbridge.org/africa/matthew.
Sunday, August 15, 2004 12:55 PM PDT
Hi everyone,
Well, I AM HOME!!! I got to come home from the hospital on Monday afternoon. It has been nice to sleep in my own bed, snuggle with Daddy, see Stesha, and be with Mommy! On Wednesday morning, Mommy got up early so she could watch the United States women soccer team play in the first game of the Olympics. I pretended to be asleep for the first half so she could watch it alone. Some of my favorite nurses came by to play so Mommy could go out and do whatever she does in her free time! On friday, we went over to Grami and Papa's house to watch the Opening Ceremonies! Grami and Papa weren't there because they are in Switzerland with Grampa Kurt and GramPam, but we got to spend time with Auntie Megan and Dakota. Dakota and I drew a picture for Auntie Megan, so that was nice. Dakota and I enjoyed playing together for awhile before she had to go to bed. On saturday, Mommy and I went to the Oregon Zoo with our friends Jennifer, her son Jack, and niece Elise. It was fun, but I was really tired because we were there for a long time. Today Mommy and Daddy are watching the Olympics and I am still recovering from my fun day yesterday!
Well, Talk to you soon!
Javad
Monday, August 8, 2004 11:23 PM PDT
Hi everyone,
Well, good news! I may be going home (yes...that place that I heard my Daddy lives!) tomorrow or the next day! After 8 long weeks, I am looking forward to throwing rocks in the pond and rediscovering home. I have been doing really good (What a good boy!). My lungs sound great and the infection I had in my blood has cleared up. I think I am going home on Cipro and I heard my Mommy say if I'm exposed to anthrax, I'm covered with Cipro! (Ha! Ha! What a joker!) The only reason I wouldn't go home tomorrow is if it takes too long to visit with all the doctors I need to see tomorrow. Today I had to do the "car seat challenge" which means I have to sit in the car seat for twice as long as it takes to drive home (so I had to sit for an hour) and maintain my oxygen saturation level. The lowest I dropped to was 98 I passed with flying colors! I have been using the bipap during my naps (what naps I have been taking) and at night time! It has really helped! I feel great! Mommy has not been really happy with me because I haven't been going to sleep. I have this really great TV and DVD player that can go right up to my bed. I am going to have a hard time leaving it behind, but Mommy thinks it has really been a huge help in passing the time.
Anyway, thank you to all of you who have been keeping both me and my family in your thoughts and prayers. I am looking forward to spending more time with Stesha, Adam ,and Simon. They have been gone most of the summer (well, I guess I have too!) and it will be good for everyone to be back together.
Talk to you soon! Please keep my Great-grama in your prayers. She has been in the hospital since last week. Mommy and everyone else is worried about her. I heard Mommy say that she is doing better, but keep her in your prayers.
Talk to you soon!
Javad
Monday, August 8, 2004 11:23 PM PDT
Hi everyone,
Well, good news! I may be going home (yes...that place that I heard my Daddy lives!) tomorrow or the next day! After 8 long weeks, I am looking forward to throwing rocks in the pond and rediscovering home. I have been doing really good (What a good boy!). My lungs sound great and the infection I had in my blood has cleared up. I think I am going home on Cipro and I heard my Mommy say if I'm exposed to anthrax, I'm covered with Cipro! (Ha! Ha! What a joker!) The only reason I wouldn't go home tomorrow is if it takes too long to visit with all the doctors I need to see tomorrow. Today I had to do the "car seat challenge" which means I have to sit in the car seat for twice as long as it takes to drive home (so I had to sit for an hour) and maintain my oxygen saturation level. The lowest I dropped to was 98%. I passed with flying colors! I have been using the bipap during my naps (what naps I have been taking) and at night time! It has really helped! I feel great! Mommy has not been really happy with me because I haven't been going to sleep. I have this really great TV and DVD player that can go right up to my bed. I am going to have a hard time leaving it behind, but Mommy thinks it has really been a huge help in passing the time.
Anyway, thank you to all of you who have been keeping both me and my family in your thoughts and prayers. I am looking forward to spending more time with Stesha, Adam ,and Simon. They have been gone most of the summer (well, I guess I have too!) and it will be good for everyone to be back together.
Talk to you soon! Please keep my Great-grama in your prayers. She has been in the hospital since last week. Mommy and everyone else is worried about her. I heard Mommy say that she is doing better, but keep her in your prayers.
Talk to you soon!
Javad
Monday, August 2, 2004 9:26 PM PDT
Hi everyone!
Well, things are going weel. I know it's been a long time since I said that! I came out of the PICU on Friday. The doctors felt I was doing really well after the surgery on Thursday night when they took my port out. When I was in surgery they couldn't get an IV so they put, what I heard them call, a central line in my leg. It actually is near my hip. It kind of bothers me because they have to change the dressing on it everyday. OUCH! Mommy keeps telling me if I didn't go potty, they wouldn't have to change the dressing. RIGHT!
Anyway, they told Mommy that I should have 14 days if IV antibiotics from the first negative blood culture which was the 28th. Mommy figures we'll be able to get home in 8-10 days. She was telling Daddy that we need to be home before the 11th because the US Women play their first soccer game that day. Mommy really loves the Olympics and has been looking forward to it all summer! I am pretty excited. This will be my first Summer Olympics!
Dr. Nichols, my pulmo, came today to see me. He has been on vacation and left the day I had the bronch done. He seemed both surprised, but pleased that I had no trach, sounded great, and looked good! Mommy told him to never underestimate me. He said "that's true!" WE really like him. He's the best!
Well, thanks for leaving me notes. I love to hear from you all!
Talk to you soon!
Javad
Sunday, August 1, 2004 12:03 AM PDT
Hi everyone!
Well, this weekend has started well. On friday, Mommy walked into the PICU and she was told that we were moving out to the floor. She was both happy and sad. We have been in the PICU so long, they were beginning to feel like family. Mommy would do the crossword with the nurses and talk with them late into the night. She was glad that I am getting better, but worried that I might be exposed to something which would delay our homecoming. Anyway, friday I moved to the floor.
Mommy talked with the doctor today. I think the plan is to give me IV antibiotics for 7-14 days, then switch to an oral one. They really want to make sure that I am getting rid of this bug.
Tonight both Adam and Stesha came to visit. Stesha was back from Sunriver and Adam home from Arizona. They both leave tomorrow for camp down at the beach. I was happy to see them both!
Momy and I continue to hang out and watch movies. I have Signing Time, Silly Songs with Larry, and Baby Einstein pretty much memorized (I think Mommy does too!).
Well, I will talk to you soon!
Javad
Thursday, July 29, 2004 12:14 PM PDT
Hi everyone!
Well, this week has been a pretty good week. I am still in the PICU, but have definitely gotten to know all the nurses! :) Last weekend I was running a fever (very unusual for me) and the drs ordered a blood culture. They sent it to the lab and it grew out pseudomonas (yuck!). That is the same bug that I have grown out before. It seems like we go one step forward and sometimes one step back! They started talking to my Mommy about removing my port because they think that it is where the infection is taking place. After much talking, they decided that it was the best plan!
Today, they are going to take out my port (how sad!). Once my port is gone they will give me megadoses of antibiotics and put in another port in August or September. My lungs are looking great (finally) and things are going well. I figure that I will be in the hospital until next week, but then maybe home! Yeah! I can't wait (and neither can Mommy and Daddy!)
Well, I will talk to you all soon!
Lots of love!
Javad
Friday, July 23, 2004 12:23 AM PDT
Hi everyone!
Well, It has been pretty crazy this last week, that's why I haven't written! I am still in the hospital. Mommy has been sleeping on the chair for the entire time! Can you believe it! She keeps telling me her back hurts! :)
Last Sunday the doctors took the tube out of my throat and out the bipap on me. It was really scary! I couldn't breathe very well. Dr. Lindsay (the PICU doctor) called the anesthesiologist to tell them I might be in trouble. They took a blood gas to see what my co2 was and after 30 minutes it was already 90! Not good! Mommy kept saying something was wrong and when I was breathing you could see my ribs. The anesthesiologists came up to put the tube back in (it hadn't even been an hour!) and they checked my gas again...138! Yikes. I guess I passed out because it was getting so high. They put the tube back in (Yuck!) and gave me some medicine to sleep!
The next morning I could tell that Mommy and Daddy were upset. I heard the doctors telling them that they would try to schedule a bronchoscopy to look at my throat to see if it was swollen. If they couldn't find anything and I was having problems breathing, they would have to put the "trach" in at that time. Mommy was crying. It made me sad too! The drs were giving me steroids (to pump me up?) to help the swelling in my throat. Mommy and I had a little chat (as she like to call it!) about what we thought the plan was. On Tuesday when the surgeon came in, he told Mommy he was going to look, then put in the trach. Mommy said, "No...look and see how things are, then only if there isn't another option, come and tell us, then you can do the trach." She wanted to make sure they were going to look first!
On wednesday, I went down for the procedure. Mommy kept kissing me before I went in and she and Daddy went to wait. I went in to the operating room and they took the tube out. They looked inside and then let me lay on the table, breathing oxygen for almost an hour! Dr. Nichols (pulmonologist) and Dr. Cuyler (surgeon) went to tell Mommy and Daddy that I was doing ok and there was no trach! Yeah! Mommy did a happy dance!
They brought me back to the PICU and I have been on bipap since. Today I got to come off the bipap for 2 2-3 hour periods. Tomorrow maybe more! I was so happy to sleep on Mommy and Daddy's chest today! I am doing really well!
Kepp me in your prayers. I want to get well and go home to hang out in my room!
Mommy has spent her whole vacation from school in the hospital with me and we wnat to go to the zoo! :)
Talk to you soon!
Javad
Thursday, July 15, 2004 2:17 PM PDT
Hi everyone!
Well, I wish I was writing to you from home, but I am still in the hospital. I have had a week of ups and downs. They thought I was improving last week and took that yucky tube out of my mouth and throat. Over the weekend I was having a bit of a time, so Mommy told me that they were going to put the tube back to help me breathe and get all the yucky stuff from inside my lungs. My lungs started to look worse earlier this week and I know that they have been talking to Mommy and Daddy about something called a "trach". Mommy has said that she doesn't think that it is the right time for that. She talked to me yesterday and said that I needed to be getting stronger and this morning my x-ray looked BETTER!! I am so proud! Mommy has said that we are not going to do anything drastic right now, we are just going to work on getting me healthy and going home. We really want to go on vacation in a week and a half! I am trying to get better so we can go!
The new surgery is really helping. I am having bolus feeds four times a day and having night drip feeds too! Yipee! I am going to grow into a big buff guy yet!
My brothers are still in Arizona and my sister is hanging out with friends so far! I can't wait to spend time with them all!
Well, I am going to go...I have sign language videos to watch!
Talk to you soon!
Javad
Thursday, July 1, 2004 11:48 AM PDT
Hi Everyone!
Well, I am still at the hospital in the PICU. They have rescheduled my surgery for Monday because Dr. Bliss was sick today! I feel sorry for him. It's a bummer to feel yucky!
Today was very exciting because they let me take a little wagon ride. I have been very cranky because I have been in the same room for 12 days! I got to go see the fish tank and the ceramic cow in the hall outside the PICU! Pretty fun!
This weekend they are going to work on getting my lungs cleared up! They still aren't all better, but hopefully soon!
Well, it's late and I am going to sleep!
Javad
Sunday, June 27, 2004 9:17 AM PDT
Hi Everyone,
Well, I am still here in the hospital. I am in the PICU. They haven't been very busy so I get a nurse all to myself! Mommy was kind of sad because my special bipap mask was lost when I was in the ER on Monday! I think she ordered a new one from Canada (we can't get them in the US) and it should get here on Tuesday. It fits my face much better so I am looking forward to that!
My co2 has been pretty high the last few days, so I have been very cranky! It is a little lower today, but still not the best. I am getting the pH probe done as I write. It feels kinda weird because they put this skinny probe thing down your nose. Icky! It will be done at 1pm.
Well, I just wanted to write a short note to let you know I am doing okay! I hope to be home by the fourth of July so I can see the fireworks!
Talk to you soon!
Javad
Friday, June 25, 2004 9:13 PM PDT
Hi Everyone!
It has been an eventful week. I was released from the hospital for a line infection on Monday mid-day, but came back into the hospital on Monday evening with a fairly serious respiratory issue. Mommy brought me into the ER because they think that I had aspirated on Sunday. It takes 24 hours for those types of things to show up, so I was acting pretty perky for everyone on Monday morning! Anyway, I am back in the hospital. I am spending time in the PICU and hopefully on Monday I will be having a surgery called a nissen to help stop the reflux.
I will keep you updated!
Talk to you soon!
Javad
Wednesday, June 16, 2004 6:20 PM PDT
Hi everyone!
Well, things are going pretty well. I am still in the hospital and probably will be until early next week. The doctors are feeling pretty good about the infection and that they are controlling it, but they are a little confused about my blood counts from last week.
Let me explain. When I came into the hospital my hematocrit (red blood cells) and hemoglobin level were very low. I had to get blood early on friday morning because they were dropping. No one knows why this happened. SOme think that it was because of the infection in my new buddy (port). I had a low crit number last month when I had the bad lung infection too, but they are not sure why all the sudden this is happening. Since I had these low numbers, they have decided to consult a special doctor that deals with blood issues. I have met him already and he seems really nice. I will have to go see him once I am out of the hospital. Maybe they will figure out what is going on. I am doing better now, but they want to see if there is a pattern.
The infectious disease doctors feel that they have the infection under control. They have recommended that I am on antibiotics for 14 days and then they'll re-check my blood. Hopefully the infection will be gone and I won't have to have my new buddy taken out!
The last thing they are doing this hospitalization is playing around with some of the medications I am on to check if they are really working. I have to go through 4 days of testing and then they'll make a decision about them. Mommy is hoping that it works out that I can still take them. Me too, if that's what she wants!
Well, I am going to go. Please leave a message in my guestbook to let me know you were here. Check on my friends to see how they are doing. Lastly, keep my friend Jack in your thoughts. He has been sick and in the hospital. I know that his Mommy, Daddy, and sister, Jasmine, are missing him and wanting him to be home.
Talk to you soon!
Javad
Visit Alex & Levi's page!
Visit Benjamin's page!
Visit Jack's page!
Visit Jacob's page!
Visit Kyle's page!
Visit Matthew's page!
Saturday, June 12, 2004 9:08 PM PDT
Hello everyone!
Well, I guess there is good news and bad news. The good news is that my lungs have been sounding great! SInce I was released from the hospital I have been on bipap at night. It has made my lungs sound great.
Unfortunately, I haven't been feeling great! I have been running a fever off and on since I got out of the hospital. On Thursday (I did wait until Mommy was finished with school!), I spiked a fever of 104. Mommy called Dr. Bonnie and she said for me to go to the hospital.
Mommy took me to the ER and I was admitted. My temperature was high and my blood levels were low. At 3:30 in the morning, the doctors woke up Mommy and told her that my hematocrit and hemoglobin levels were extremely low. They said that I needed blood right away. In the morning, Mommy was told that I had an infection in my blood. She didn't seem too worried because I wasn't acting very sick. She found out later that I have pseusomonas (a pretty icky bug!) that is in my new buddy (the port I had put in lsat time!). Needless to say, I think I am going to be at the hospital for awhile. It can be dangerous to have an infection in my blood and the doctors are trying to not have to remove the port. I hope that they don't have to, but we'll see.
Anyway, I am feeling much better, but I am here for awhile!
Talk with you all soon. Please keep my friend, Jack in your thoughts. He is in the hospital too.
Javad
Saturday, June 5, 2004 6:06 PM PDT
Hi everyone,
Well, it has been an eventful time since I got back from the hospital. For the first few days I ran a fever of 101.4, which is very high for me since I normally run a temperature of 96. I was very unhappy. I was also looking pretty yellow which resulted in getting a liver scan to make sure that I was not getting sick. It ended up that my liver scan went okay. I got to watch on myself on the screen. Pretty neat! The big kids are getting out of school soon. I know that they are pretty happy. Mommy gets done too. I know she is ready for a break. When I was in the hospital, it was pretty hard for her.
Mommy has been fighting with the insurance company lately. My nursing is running out and we don't have enough to make it through the next year. She is worried that there will be no one to take care of me while she is at work in the fall.
Anyway, please leave me a message to let me know you have been here and visit my friends and see how they are doing!
Talk to you soon!
Javad
Benjamin's page
Jack's page
Jacob's page
Kyle's page
Matthew's Page
Tuesday, May 25, 2004 9:58 PM PDT
Hi everyone!
I am happy to say that I am feeling much better today. Last night Mommy took me to the ER to get some blood drawn. I had been running a fever for two days and I was so hot! My hands and feet were burning up! I was feeling dehydrated and HOT!!!
Anyway, when Mommy came home from work I was hot and my eyes were looking kind of yellow. Mommy talked to the doctor and they decided that I should go get the blood drawn. They found that my bilirubin is a little elevated. Tomorrow I am getting an ultrasound on my tummy!
This morning when I woke up my temperature was down and although I am still weak from the long visit to the hospital, I am looking perkier!
Well, I wanted to give you the update. Please keep my friend, Jack, in your thoughts. He is in the PICU in Australia and pretty sick! His family is pretty tired from the whole thing!
Javad
Check out my friends sites:
Benjamin's Webpage
Jack's Webpage
Jacob's Webpage
Matthew's Webpage
Monday, May 24, 2004 11:39 AM PDT
Hi Everyone!
Well, I am happy to say that I came home from the hospital on Saturday. Everyone was really happy. Mommy is really tired and so am I. I wish I could say that I was feeling good, but on Sunday I was running a temperature of 101. I was feeling really crummy! Mommy was pretty upset because she was worried. I don't usually run a temperature so that makes her worried. Hopefully it's no big deal. Anyway, sorry to make it so short.
Talk to you soon!
Please keep my firnd, Jack, in your thoughts. He is feeling pretty crummy.
Javad
Thursday, May 20, 2004 10:10 AM PDT
Hello everyone,
Well, I am happy to say that I am feeling MUCH better. I am still in the hospital, but I should be going homethis saturday! Everyone is sooo excited, including me! I am feeling good. They are still working on getting my food up to the amount that they want, but had told Mommy that could take a few weeks, so Mommy will work on it at home and at night I will have to get IV fluids so I don't get dehydrated. I have lost 2 pounds since going in the hospital, but at least I had a bit of cushion on me. I am a little weaker since I went into the hospital, but am getting stronger day by day!
Yesterday they delivered the bipap machine that I will use at night. It is really small! Mommy was pretty excited about that! She says we're running out of room! :)
Last night Daddy and Simon came to visit me and today I think Stesha is coming to say hi. It makes me very happy to see them. I have been really lucky that Grama and Grampa have been coming to sit with me so I don't have to be alone during the day! (They are my great-grandparents!) I love being with them! Grampa holds me all the time and Grama alks to me and sings to me!
Well, I wanted you all to know that I am doing better and going home soon!
Please leave me a note so I know you've been here!
Talk to you soon!
Javad
Monday, May 10, 2004 9:38 AM PDT
Hi everyone,
Well, I wrote too soon last friday. Around 1:00pm, I had an episode at the hospital that required me to go back into the PICU. They think there was a plug that was shoved down into my lungs and I couldn't breathe very well. A lot of doctors and nurses came running into the room and they had to use that funny mask thing to help me breathe. I know it was very scary...I coud see it on their faces and hear it in their voices. They all love me and don't want anything to happen. They called Mommy at work and she came right away. They rushed me into the PICU and told Grama and Grampa, who were sitting with me, that my co2 was 152. VERY HIGH!! The PICU doctor put me on the bipap to see if I would respond quickly, which I did. I was on the bipap all evening friday and all day saturday, My co2 got better and on Sunday (Mother's Day) they moved me back out to the floor.
I am doing much better. Mommy keeps telling me how strong I am. I am sorry that I scared everyone. Mommy and Daddy keep saying that they've aged!
I think I will be in the hospital for at least another week. THey want to keep an eye on me and make sure that I am eating okay. Thank you for checking up on me.
Talk to you soon!
Javad
Friday, May 7, 2004 9:11 AM PDT
Hi Everyone,
Well, things are finally looking up. I have been doing pretty well. They are talking about me going home next Wednesday. Mommy says that we'll see, but at least they are talking about it! I have been feeling much better. I have been getting the bipap at night and it looks like I will have that at home too. I am not sure if I explained what bipap is, so I will tell you. Bibpap is a machine that helps me to take more full breaths when I am sleeping. Some adults use bipap if they snore or have sleep apnea (which I don't have, but oh well!). Dr. Nichols (my pulmonologist) say he thinks that the bipap will really help me long term. He thinks I'll have more energy and feel better. I know that Mommy is a little concerned becasue she doesn't want me to rely on it, but Dr. Nichols doesn't think that is going to happen.
I am going to be really happy to go home. I miss Adam, Stesha, and Simon and Daddy. I have lost weight and am not as strong as I was before. Mommy says I'll get my strength back.
Well, I will talk to you later! Thanks for checking up on me!
Javad
Monday, May 3, 2004 8:57 AM PDT
Hi Everyone,
Well, I wanted to let you know that I am feeling quite a bit better. I am still at the hospital though. I have been getting bipap at night (it's like a machine that helps me expand my lungs better...kind of like my respiratory treatments for 8 hours.) and that has helped open me up! My co2 level is still in the 60's, but I guess it's getting better. Mommy found out from Dr. Nichols (the pulmonologist) that I have grown out pseudomonas, so I am getting antibiotics for that now. I guess I am trying to get all the bugs so I can go home for a long time! I have been watching a lot of movies...Lion King, Toy Story, and Finding Nemo. I think Mommy has them memorized by now!
Thank you for keeping up with me. Mommy hopes that we might be home by Mother's Day. It has been a long road and we hope to be home soon!
Javad
Monday, April 26, 2004 9:26 AM PDT
Hi Everyone,
I know that my Mommy wrote for me last week when I was soooo sick, but I am feeling better so I decided to write! I am still in the hospital ICU, but Mommy thinks that they may move me out to the floor today. On Saturday they took that icky tube out of my throat (Yuck!) and I still wasn't feeling that great all day. Mommy and I took a really good nap after they took the tube out (I slept on her chest...ahhh to finally be held again!), but I needed to go back in the bed because I couldn't keep my oxygen level up. Yesterday I was feeling a bit better...enough to have a little tantrum, but I still kept dropping my oxygen down. Last night I seemed to turn the corner and started having good numbers again! Dr. Nichols (the pulmonologist) said my x-ray looked good this morning even though my co2 numbers are kinda high. He said that I might just have some higher numbers for awhile. We'll see if they move me to the floor.
I am still kinda bummed because I can't move my left arm very well. It gets frustrating. I can do more with it than I could a week ago, but I still can't move it very well. When I am tired, I can't pick it up hardly at all! The neurologist says that I may have strained a nerve and it will take awhile to get better, but it still is frustrating!
Well, I am going to go for now. Thank you to all those who have been praying for me.
Talk to you soon!
Javad
Saturday, April 17, 2004 2:41 PM PDT
Hi everyone!
Well, I am writing for Javad again because he is very sick. Yesterday evening when I was coming home from work, I received a call from my grandparents, who were sitting with Javad while I worked, that the drs had decided to move Javad into the Pediatric ICU. It seemed that he had been struggling all day and decided in the afternoon to take a blood gas (he seemed a bit lethargic) and his co2 was at 100. (Javad's normal is in the high 40's/ low 50's.) Anyway, they moved him to the ICU and had to intubate him. They had a really hard time getting the tube in so had to call the anethesiologist. He finally got him intubated and put on a ventilator. Its hard to see him vented, but I know that it is helping him rest. They put him on a set rate last night, but plan on changing to a vent that will slowly wean him.
They also found an opportunistic bacteria, klebsciella (spelled wrong, I am sure!) which has heavy growth in his lungs. They think this was probably the thing that tipped him over the edge.
Please keep Javad in your thoughts. Also keep our friend Jacob, a boy who is also affected. Jacob has also been ill.
Thank you for all your support.
Talk to you soon.
Shannon (for Javad)
Friday, April 16, 2004 3:11 PM PDT
Hi eveyone,
I am having to write for Javad today because he is very sick. We took Javad to the ER last sunday with a pretty bad case of pneumonia. He seemed to be getting better a few days ago, but has taken a downturn. This virus has caused some unexpected things, mainly that he can't move his left arm. One of his doctors think he has brachioplexitis, which is an infection of the muscle and nerve. He is getting really frustrated because he can't sign effectively. It is hard to communicate one handed. He has been changed to a new antibiotic because he is growing both gram positive and gram negative bacteria. This is an antibiotic he has been on before so I am hoping that it will work quickly. Last night he started to rn a fever, which has made him even more lethargic and uncomfortable. It has been a hard week and I was hoping that he would be doing better and looking forward to going home over the weekend, but I am not sure that is going to happen now. It is hard on the other kids having Javad and I gone (i sleep at the hospital) and it is hard for me to be away from them all too!
Please keep him in your prayers that he snaps out of this soon!
Shannon
Monday, April 12, 2004 11:40 AM PDT
Hi everyone,
I am sorry that this message will be very short. Yesterday afternoon Mommy and Daddy took me to the ER (the doctor had suggested it!) and it seems that I have "big time case of pneumonia." I am feeling pretty crummy and am having treatments every two hours around the clock. I hate that! Hopfully I will feel better soon. Mommy says my lung looks pretty cloudy, but I am hoping for a speedy recovery and home again soon!
Talk to you soon!
Javad
Sunday, April 11, 2004 8:29 AM PDT
Hi Everyone!
HAPPY EASTER!
This has been a bit of a hard week for me. On Wednesday, I came down with something and I feel pretty crummy. Wednesday morning I was feeling a bit under the weather, more secretions, sounding kind of raspy, but felt good enough to go to water therapy. That went really well. I had a blast, but only lasteed about 30 minutes! Mommy and Anne took me home and on the way in the car, I had an "incident." I was having a really hard time breathing and Mommy had to pull the car over because I was ghost white! She pulled out the oxygen and Anne suctioned (YUCK!), but after getting the oxygen on I felt better! Needless to say, I have been on oxygen since and pretty much have laid around, sleeping and watching videos. Mommy says if this was going to happen, it was a good time with the insurance thing and all, but I know she's really worried! I heard her say that she hates it when I act this way. All I want to do is sleep, not play at all. I try to smile at her, but it comes out as a half smile! I think I remind her of when I was little and at the hospital all the time. I heard her say that she was going to try to get me in to see the doctor tomorrow. I think she wants to get a picture of my chest insides to make sure that nothing is going on! Well, writing this has meade me tired. Please keep me in your thoughts!
Talk to you soon!
Javad
Monday, April 5, 2004 9:32 PM PDT
Hi everyone!
Well, another week has gone by. Things have been in full swing at our house. Everyone is back at school and their after school sports. Adam is running track (and doing well!), Stesha is playing Lacrosse (and enjoying it!), and Simon is starting track!
Mommy, Stesha, and Adam are doing a running program called Portland Fit. I heard that Mommy might try to do the Portland Marathon in October. We'll see, but I hope she makes it! Adam and Stesha can't run the marathon because they aren't old enough, but they are going to train anyway! I think I heard Mommy say that she just hopes that she runs more than she walks!
I am doing well. I have been working hard on being in the stander and am trying to put two word signs together, My latest are "yes, please" and "more, please".
I am growing and getting longer! Mommy says that I just keep getting bigger (well, duh, does she expect I am going to get smaller?)
I really enjoy Thursdays when we go to Grami and Papa's house for "Survivor Night!" We all go over, have dinner, and watch survivor! What fun! I like to see everyone and play. I am letting my cousin, Dakota come closer to me and play. (That has taken a long time....sometimes I get overwhelmed by her!) Maybe one of these days, I'll even let Grami or Papa hold me!
I don't think I am supposed to know, but I hear Mommy say that we are having a problem with the insurance making sure the nurses are here to take care of me. I know that this is a big deal, so please keep that in mind.
This weekend it is Easter. Please pray for peace around our world. THis is a time where so many things are going crazy in our world, please peay for those who are leading us.
Talk to you soon and have a great week. Please leave me a message in my guestbook.
Love,
Javad
Tuesday, March 30, 2004 8:54 AM PST
Hello everyone! Well, I went in the hospital last week to have the Pamidronate. It went really well. Well, that is after they got the IV in. It was horrible! They had to poke me 9 times in order to get the IV in. I was NOT a happy boy. Mommy is going to talk to the doctor and find out how often they want me to get this medication and possible look into putting in a "port." A port is something that's surgically put under my skin and then they would only have to poke me one time to get "access." If we do that, I think I can get the medicine at home from now on rather than going to the hospital! Anyway, this time I didn't get sick...Mommy and I had lots of fun and I got to see all my nurse and doctor friends!
Adam and Simon went to Arizona over Spring Break. I really missed them when they were gone. I think that they missed me too because they gave me about a million kisses when they came back! Then, can you believe it, they both went to a friends house (different friends) when they got home. I think they had a fun time, but I missed them a lot!
Stesha went over to her friend Taylor's house for the first four days of break. I really missed her too! She came and played with me when she got back! I was so happy to have them all home.
On Sunday, everyone in the family went to the beach for the day. I stayed home because I was pretty tired. They said they had lots of fun. I am glad that they got to get away! Next time I'll go too!
This week I am going to water therapy. I am liking it more and more. Mommy has also been talking to April about doing wheel chair training. I guess that's when I get to try out some new wheels and see how fast I learn. Of course, I will be so quick at learning, I will surprise them all! If I learn quickly, they will start looking at ordering me a chair. Then I can zoom around like the best of them. There will be no stopping me then!
Well, I guess that pretty much updates everyone on my exciting life. Things are going well, I am feeling great!
Drop me a note in my guesbook so I know you have been to visit!
Love to you all!
Javad
PS Happy Birthday, Mommy! Getting younger all the time!
Sunday, March 21, 2004 11:26 PM PST
Hello everyone!
Well, tomorrow I go into the hospital to get my second round of pamidronate. Pamidronate is a medicine that I have to get to help with my osteoporosis. Last time I went in, I had a kind of bad reaction, so Mommy convinced Dr. Anadiotis (my geneticist) that I should go inpatient once more so we can test it out! (What an awesome mom!) So Mommy (with the help of Anne) packed our bag and we'll go hang out with the nurses for three days. The medicine goes into an IV (Yuck!) for four hours a day for three days! Hopefully, I won't feel yucky or have a high heart rate this time!
This week is Spring Break for all the other kids. so Stesha is spending some time at her friends and Adam and Simon are visiting their mom in Arizona. Everyone will be back home when I get home (I am sure that it's to see me!)
We have been working on the stander. I like it OK, but am not always happy to be in it! You know, I am two and very opinionated! Mommy always, "It's because he's two!"
Well, sometime soon, Mommy will put some new pictures on the site. I have grown..I am 22 pounds and 8 ounces (Yeah!) and am about 37 inches long. Long and lean, Mommy likes to say!
Well, Please drop me a note on my guestbook and visit my friends!
Talk to you soon!
Javad
Wednesday, March 10, 2004 6:40 PM PST
I am so sorry that I have not been writing more regularly. Things have been very busy (you know, for a two year old!)
Last weekend, Adam, Stesha, and Simon had a Bible Quizzing meet in Idaho. Mommy and Daddy packed everyone up (including Michaela and Copeland from the youth group) and we all went to Idaho! I had so much fun! I stayed with the girls (lucky me!) and we stayed at a homestay. They had two children and were very nice to me even though I have to bring a bunch of equipment with me! On saturday when the kids were quizzing, I stayed with Daddy playing with the toys that Mommy brought. All the people were really nice! Mommy said the kids did really well at the quizzing meet and they sounded pretty excited and happy to me!
On the home front, things have been good. I feel really healthy and am growing. I haven't been wanting to go in my stander, but I think that Mommy is going to tell me I need to. Tomorrow Chris (my PT that comes to the house) is going to look at it to make sure it's all adjusted for me! That way Mommy says there is no excuse!
I got to swimming again next week and I saw that Mommy bought me a new vest to help me float in the water. We'll see how it goes. I am going to try it out.
I have been working with Mira (my speech therapist) and she is getting me ready for a new communication board. It's like a little computer that "talks" for me when I push the buttons. I have to push the right buttons and then it will say the words.
Mira and Mommy were talking about me trying out a power chair sometime soon. Everyone thinks I am so smart and clever (well, no kidding!) that I am ready to have some independence. I know that Mommy and Daddy will have to make the house accessible, but I think they have been talking about that! Everything in time.
Well, that's about it at my end. Please leave me a note in my guestbook and I'll tell Mommy to put some new pictures up soon!
Javad
Monday, March 1, 2004 8:25 PST
I am sorry that it has been a whole week since I have written. This has been a busy week around my house! Let's see...
On Wednesday I went to physical therapy with Kim at Emanual. She put me in the gait trainer (which I loved last time) and I was NOT happy! (ahhh! The power of being two!) Mommy was talking to someone and we had to go find her because I was crying! Needless to say, Kim and Mommy have decided that I am going to get a gait trainer of my own. Mommy is pretty excited about that. I guess I am excited too. It will help me to be more of a big boy!
I also went to speech at Shriners on Wednesday (they are busy days!) and Mira and I played with the new communication board that is similar to the one I will be getting. It's so neat...like a computer. I know that I will keep learning fast as soon as I get one of my own. Boy people better look out! I have lots to say! Mommy and Daddy have been making me use all the signs I know and teaching me some others too. This way I can't just point and use what Mommy calls the "universal growl!" I have been working really hard on my sign and it is great!
On friday, I went back to Shriners for my appointment at the Neuromuscular Clinic (I go every 6 months). That is always a very exhausting appointment for me because it is almost 3 hours long. I saw the neurologist (Dr. Russman) who said I am doing great! He was impressed at how well I can sit and move. I wasn't even performing either! Then I saw the geneticist (whose name I can't remember and neither can Mommy) and he checked me out too. The most exciting part of seeing him is that I get to get some testing done to find out if I have the x-linked type of centronuclear myopathy or the autosomal type. Mommy has been working on it with one doctor and the one at Shriners said we'll just order it! It has to go to University of Chicage, so that's pretty far! I have to go get blood drawn today and then they'll send it. If I have the x-linked type, then Mommy will get tested to find out if she's a carrier or it just started with me. I also saw the orthopedic doctor who took an x-ray of my hips. He said they look good, but we need to keep an eye on the left one. Remember that I broke my right hip this summer and the doctor said it healed so it fits correctly in the socket. Now we need to keep an eye on my left to make sure it stays in the socket.
Well, that's about all that has been going on. Whew! Writing it down makes it seem like a lot!
Thank you to all who have signed my guestbook. Mommy reads them to me.
Talk to you soon.
Lot of Love,
Javad
Saturday, February 21, 2004 10:46 PM PST
This week has been a busy one. I have been feeling great! Everyone says I sound so good and my lungs are so clear. Mommy was saying the other day that it has been almost seven months since I have been in the hospital for being sick. That has to be some kind of record! Everyone is very excited, but doesn't want to get too excited. I am trying to convince them that I am doing better, but I guess they just want to worry! I have been getting in my stander every day from between 30 and 60 minutes. It is so cool to be up like a big boy. I have a tray that goes on the stander so I can play if I want. Sometimes I want to look out the window or watch Toy Story for the 100th time!
I had water therapy again on Wednesday. I let April, the therapist, get close to me. We even played catch. I would throw the ball to her and then she would throw it back. Sometimes, I wouldn't throw, but just hand it to her! I wanted to keep her on her toes. I did have a little tantrum and throw my face in the water (boy, that was a surprise), but I think I had better not do that anymore! We played for about 45 minutes and I heard Mommy say that she wants to get me some kind of vest so I can swim alone. We'll see...I kind of like that she holds me.
Well, that's about it for my exciting life. Thank you for signing my guest book. Mommy reads them and tells me all about them!
Talk to you soon!
Javad
P.S.
Please keep Mommy and my Uncle Lorne in your thoughts. Their mom, my GramPatti, passed away today. They are acting really strong, but there is no good way to lose your mother.
Friday, February 13, 2004 9:10 PM PST
Well, this has been a fun, but busy week! I am feeling great and have been pretty happy! On Monday, Chris (one of my therapists) came to the house and adjusted my stander. I haven't been able to be in the stander since this summer when I broke my leg. It has taken me this long to be cleared to stand. My mom thought I was going to cry when I was put in the stander, but instead I was so excited. I love being able to stand! I am so tall and I can see better. I like being near the window so I can see! It's pretty neat!
On Wednesday, I went to physical therapy and I got to try out a gait trainer. It's kind of like a walker that I stand in. Kim (my therapist) helped me "walk" while she pushed the gait trainer forward. I was so happy. I felt like a big kid! After awhile I was picking up my right leg to take steps of my own. I wasn't strong enough to push the gait trainer forward, but I liked that I was walking!
After PT, I went to speech with Mira. We have been working with a communcation board. I love pushing all the buttons to hear them talk to me. Mira has told my mom that I might get one of my own sometime soon. Then I could really boss everyone around!
Well, I guess I should go, for now. Leave me a message in my guestbook and let me know you were by.
Javad
Friday, February 6, 2004 10:28 AM PST
Hi everyone!
Well, I am finally feeling much better. Since I got the medicine for my bones, I have not quite been feeling myself! I have been crankier, acting weaker and, as my mom says, being 2!
We have been playing this new game where I sit in a laundry basket and get pulled around on the floor. It's like a ride! I just laugh! Mommy got me a new walker awhile ago (I may have mentioned this before!) and we've been putting it on the wood floor so I can scoot myself backwards a little! Step by step, I am getting stronger!
I got to go to water therapy this week for the first time. It's kind of like being in a really big bath tub! Momy was in there with me and April, the therapist. I wasn't very excited about having her in the pool with us, but I guess I'll get used to her! By the end of the time in the pool, I was letting April get close to me. Maybe next time, we will play!
Well, this weekend we are going to relax a bit. Mommy is trying to change my nap schedule and I am not being the most cooperative. After all, I am two now! I have my own thoughts!
Well, I will talk to you soon! Please sign my guestbook. Mommy reads them all and tells me about them!
Javad
PS Stop by my friends sites and see how great they are doing! Happy late birthday to Jacob! Now you're two too!
Monday, February 2, 2004 6:34 AM PST
Wow! It has been a long time since I have written! Things have been going well, just busy! I have been teething and my Mommy says that she thinks I am getting big boy teeth. They hurt really bad and are really big! I will be happy when they are all in. I think I am getting about eight!
Since I have written I wne to the hospital for three days in January to get a new medicine called Pamidronate which will help my bones get stronger. It made me feel pretty yucky for about a week. They had to put an IV in my foot (which took them forever...I was not happy!) and then give me the medicine for four hours a day for three days in a row. I was pretty cranky the first day and the second day I couldn't sleep because my heart was beating so fast! It was tiring (for both Mommy and me!). I think I heard Mommy say that when we get this medicine in March that she wants me to go to the hospital again. I was feeling pretty bad! I did get to see everyone at the hospital though and they were so impressed at how well I can sit up and play. I finally got to show them my skills, after all the only time they usually see me is when I am really sick! I had lots of visitors and they thought I am growing up into such a handsome man! (We know that already!)
Once I got through that, things have been pretty good. Dr. Cockrell changed a few of my medicines beacuse I have gained four pounds(!!!) since October! Mommy was pretty excited that I have put on that weight. That's what feeling good can do for you!
I have been hanging around at home. This week I start water therapy up at Shriners. That should be fun. Kind of like a very big bath (Yahoo!). I have also been working with my speech therapist and impressing her will my skills on a new communication board. It's kind of like a computer that will help me be able to talk to everyone more. Just wait until I get one of those...I will never be quiet! Mira, my speech terapist, says I am going to keep working with her and maybe in a few months get one of my own. We have to keep practicing first!
Well, I guess that's about all. Please let me know that you stopped by to read and I hope to talk to you soon!
Javad
Thursday, January 15, 2004 7:26 AM PST
Well, today I am going to stay at the hospital for three days to get a new medicine called pimidronate to help my bones get stronger. Mommy says that they will have to put in an IV and give me the medicine for four hours a day. I am not sure that I am very excited about that idea, but I guess if it is going to help me get stronger, it's okay. I guess I will have to get this medicine every two to three months, but I won't have to go to the hospital every time! Whew!
It's going to be kind of weird since I haven't really been at the hospital that much since summer. I heard that I am going to have my Auntie Amy for my nurse today, so that will be nice. Sometimes it's scary not to know people. Mommy says she is going to bring my new rocking chair and my fish light so I'll feel like I have some of my room at the hospital. I will try to write while I am in the hospital, but I am not sure I will be able to get to a computer. Keep me in your thoughts...I am a little nervous about this!
Write me a note in my guestbook if you have time.
Javad
Sunday, January 11, 2004 6:34 PM PST
Well, the snow is finally melting and after four days of being stranded in the house, Mommy and Daddy are finally able to get out for a bit. This weekend, Adam and Stesha has a group of friends over. It seems like they always have friends over to the house and, like all teenagers, they are loud! Simon went to a birthday party so he got to escape for a bit! :)
I have been feeling really good lately! The only bad thing is that I am getting about four chompers (big boy teeth) and they are bothering me! Mommy says that I seem to get all my teeth at once. Mommy has been putting stuff on my gums to make it better and giving me tylenol to help.
Mommy said that this next week I may be going to stay at the hospital for three days to get a special medicine that will help my bones get stronger. I guess I have to get this medicine every 2-3 months, but I should be able to get it by outpatient next time. It takes three days each time I get the medicine. That doesn't sound very fun, but I guess if it helps me get stronger!
Mommy bought me a walker today and I am hoping to try it out soon! Maybe I will be able to get myself around the house. That would be neat! She also got me a big boy rocking chair so I can sit and "read."
Well, as you can see, things are going well. Please send me a note on my guestbook so I can read it and I'll talk to you soon!
Javad
Tuesday, January 6, 2004 9:15 PM PST
Well, another day of snow and really cold weather! It started coming in yesterday and Mommy says that there was about 4 inches outside! Then I heard that there was freezing rain! I am not sure what that is, but from what Mommy said, it means that it is really slippery! The temperature was really cold for Oregon...16 degrees! brrr! The best part of the whole thing is that Mommy, Daddy, Adam, Stesha, and Simon were all home to play with me! I want more of these days!
Last night when it was really cold, I heard Mommy and Daddy talking that the heater was broken in the house. Brrr...It was really cold. The best part was that I didn't have to sleep in my big boy bed, but got to sleep with Mommy instead! Daddy stayed in the living room putting logs in the fire so we would all stay warm! Luckily, the heater man came and fixed the heater, so tonight we are all snug as a bug!
Mommy and Stesha get to stay home with me tomorrow too, but Adam and Simon don't know yet if they get to stay. I know they are hoping.
Well, nothing else exciting to tell you about. I will talk to you soon!
Please remember to sign my guestbook. Mommy tells me all about the people who drop me notes!
Saturday, January 3, 2004 2:36 PM PST
Well, it certainly has been busy around our house the last few days! First of all, it has been snowing here! On New Year's Day, we had a lot of snow (well, by Oregon standards). Stesha and Adam each had a friend over and Mommy and Daddy couldn't even take them home because it was so slick! Needless to say, both of them were happy that their friends got to stay longer.
I have had lots of fun hanging out with Mommy and Daddy. We have played a lot and I have given them lots of hugs and kisses. I love giving kisses the most! I have been playing with my new Little People Zoo that Santa brought me. I like it because it "talks" when I push the buttons!
Well, Mommy says that there is going to be lots more snow tonight and tomorrow. Maybe I'll get to go out and play in it this time! That would be lots of fun!
Well, I will talk to you soon!
Thursday, January 1, 2004 10:41 PM PST
Well, I am happy to report that I am feeling much better! (finally!) I decided a few nights ago to take myself off the oxygen and there has been no turning back since. I feel pretty good although I haven't been sleeping like my usual self! Mommy keeps complaining that midnight is not the time that boys should be going to bed, but I can't seem to make her understand that I want to see all the great stuff! Good thing I make her smile!
New Year's Eve, Mommy and Daddy had some friends over. The bigger kids had a bunch of friends over too. It was pretty loud, but I made Daddy come and lay down with me. I think he fell asleep first, but Mommy came in and kissed us to wish us happy new year!
The neatest thing so far is that we have a lot of snow! It snowed a few days ago, but it just keeps snowing! Our yard looks pretty neat...all white and beautiful. The big kids like it too. I hear them laughing and playing outside! Even the biggest ones are having a good time! Someday, I'll get to go too, but for now I just look out the window!
Well, I hope that the new year brings you many blessings. Thank you to all of you that keep both my family and myself in your prayers. Prayer is a powerful thing and I am proof that strength can come from numbers! Thank you!
God bless and talk to you soon!
Saturday, December 27, 2003 6:53 PM PST
Well, Christmas was great. I don't really remember it being so neat last year, but I had fun this year. Mommy made this really yummy dinner on Christams Eve and I got to sit in the high chair at the table! Mommy and Daddy brought the oxygen I needed (I hope I am done with it soon...I am tired of dragging it around!) and after dinner all the big kids and I got to open presents! I was so excited to open things that I would help whoever was holding the present. The big kids kept laughing at me because I was soo excited! I am feeling a lot better today, but still am on a very little oxygen. I hope that I will be over the cold and back to my old self tomorrow! Today, the big kids left to go to camp, so I have Mommy and Daddy all to my self! I'll probably make them watch a movie with me, but maybe I'll just go to sleep early! Well, I hope that your Christmas brought you all you want and remembering the true meaning of miracles in past and current days!
Talk to you soon! Please sign my guest book so I can read you were here and stop and visit my buddies sites too!
Tuesday, December 23, 2003 11:00 PM PST
Well, I think I am finally making the turn around the corner. Mommy says that I sound better today. I feel better too! I wanted to play more and let everyone touch me! Usually when I am sick...people need to back off. I can be cranky! I am hoping that I won't need the oxygen on Christmas, but I know that I need to get fully better!
Anyway, Mommy was gone all day today. I think she said that she was shopping and she stopped by to see Dr. Mike. Mommy had told me that he was leaving to go to Canada. Oh boy...now I will need to train a new doctor! When Mommy was shopping, I hope she remembered to get me some good stuff too! I also heard that this morning she took my big brother, Adam, to get his drivers permit. I heard that he passed! Good job, Adam. (Although I am not really sure what that all means, everyone seemed to be really excited!)
Well, Christmas is only two days away. I hope that St. Nick comes by our house. Thank you for keeping me in your thoughts as I have been fighting this cold. I know that your prayers have made me stronger!
Have a wonderful holiday season! I am sure that I will have plenty to talk about! Remember to sign my guestbook. I love to hear from you!
Monday, December 22, 2003 12:01 AM PST
Well, the weekend is finally over, but I am not better yet. It has been a big bummer! My "aunties" say that I am sounding better and I feel a bit better, but I still am coughing a lot! I overheard my mommy say that this is a pretty nasty cold going around and how lucky I have been to not get it before this! All the other kids have been sick this fall, but I have stayed strong. I know that Mommy is a bit worried because Christmas is just around the corner, but I am trying to get better...fast. I haven't even seen the tree or anything. Maybe tomorrow! I think if I keep getting sleep I'll get better faster. Well, on that note, I should go to sleep!
Please remember to sign my guest book. Mommy reads all of your notes to me and it's neat to hear from you!
Friday, December 19, 2003 8:13 PM PST
Well, today was my big appointment that we have been waiting for at Shriners Hospital. I saw a man named Dr. Steiner. He seemed really nice. He talked to Mommy, Daddy, and Grami about my bones. I think he said that he was a bone specialist. He asked about my broken leg this summer and then sent me to get a special test called a DEXA scan. It is a bone density test that will tell them how strong my bones are. I had to go to the hospital next door to get the test done. The lady technician was very nice and she let Mommy and Daddy hold my hand while I laid on the table. There was a moving thing above my head that she said was "looking at my bones." I hope that my bones looked nice and clean, because I didn't take a bath today. I did take a really long one yesterday though, so I hope that helped! Anyway, after the test, I went back to see Dr. Steiner. He had the results which said that I have really low bone density. He said I have osteoporosis, which I hear Grami say that older ladies have. Hmmm...didn't anyone tell Dr. Steiner that I am not an older lady, but rather a 2-year old boy? Maybe he was confused! He told everyone that although my bone density was significant, it was not severe. Mommy, Daddy, and Grami seemed to like that answer. He also told them that he thought I would be able to take some special medicine that might help my bones get stronger. Yeah! Mommy has to call another doctor to get that special medicine. I think she said the special doctor is a geneticist, whatever that is! I also heard Dr. Steiner said that I would have to get the medicine over three days. Oh well! I'll worry about that later! Finally, Dr. Steiner said he felt very hopeful. He thought I was doing well (duh!) and that he thought that with all the advances that are happening in the medical world, there might be treatment for my condition in my lifetime. Everyone seemed to feel really good about the whole thing! I have to go back to see Dr. Steiner in six months for another bone scan, but for now I get to hang out. My cold is getting better although I am still needing oxygen to help me breathe better. Mommy is hoping that I will be better by Christmas and I think all my "aunties" are thinking that too because they keep doing my treatments frequently! Oh well, I am getting to watch lots of movies and hanging out in the bedroom. I can't wait to see our tree and all the santas that are around the house. Maybe in a few days! Only six more days until Christmas! Happy holidays!
Wednesday, December 17, 2003 11:02 PM PST
Well, here is is...day four of being sick. I am actually feeling MUCH better. I have had to use some oxygen since Sunday (it makes it easier to breathe when I am sick!), but I am using less. Mommy is a little bit worried because I have a really big doctor appointment on friday at Shriners Hospital. I think I heard her say that we're going no matter what...oxygen and all, so I had better get well fast! All my "aunties" that come and take care of me having been doing all my treatments closer together and knocking the stuff off the inside of my lungs by doing cpt (chest percussion therapy). That is my favorite! It feels like I am getting a really good massage! Hopefully, all of this and I will be in tip top shape soon! I have been having more energy this afternoon. I was playing with my new "Bob the Builder" lunchbox that I just got from Deb. It holds my new cars! Pretty neat! The big kids are all trying to finish their homework to get ready for vacation (whatever that is). I guess that they will all be around to play with me for the next few weeks! Yeah! Well, I had beter go to sleep so I can be better for all the playing we're going to do! Talk to you soon!
Sunday, December 14, 2003 7:03 PM PST
Well, this week has been a busy one. Earlier in the week I was showing off for everone how great I can sit, how I can turn from side to side, and ,of course, clapping for myself with every new trick! My mommy and daddy have been very busy playing with me and kissing me all over (yuck!). I really do love it though! The older kids, Adam,Stesha and Simon have been doing their homework every night...boy am I glad all I have to do is sit back and wait for someone to feed me and play with me! This has been a hard week for mommy. She keeps in contact with other parents who have sons with the same disorder as I have, and she got some really bad news. The parents of two young boys that my mommy had corresponded said that the boys went to live in heaven. It made my mommy really sad. I tried to tell her that it was going to be ok, that God has them safe now. I think she knows, she just kept saying that her heart was broken. I am going to give her extra kisses to make it better! Unfortunately, last night I started feeling kind of crummy. I think I have a cold. I know that mommy and daddy have been really worried about me all day. I am going to take my medicine, do some extra treatments and get better. Well, I just go take a nap, so I can get better soon! Talk to you later!
Thursday, December 4, 2003 12:51 AM PST
This has been a good week! My mommy is so excited because I have been trying out lots of different foods! In the past it has been really hard for me to eat. I would try, but mostly I would get scared and start to choke. My mommy and daddy decided that I am getting stronger and I should try again (I gave them a clue..I have been putting everything in my mouth!) So, I have been trying different foods. I have been eating yogurt and ice cream. Yummy! Last night Auntie Linda (one of my nurses) gave me some pancake to eat. She even put peanut butter on it. It was yummy. I was sooo excited that I shoved the whole thing in my mouth, but she reminded me that I can't swallow that much! So, I took some out of my mouth, then swallowed the rest! My mommy was sooo excited! I am pretty excited too. This could be the life. Getting my milk and eating food too! Well, I am sure that I will have many more exciting things to tell soon!
Sunday, November 30, 2003 11:14 AM PST
This weekend has been pretty great so far. My whole family has been home with me! We have had a great time! Onfriday, everyone went to go get pictures taken. It was pretty fun! We met Grami and Auntie Megan and Dakota at JC Penny to get a "family" picture taken. First, I went in alone. My Mommy and I have been practicing "taking pictures" and smiling so I was ready. They found this really neat red chair for me to sit in. I could even touch the floor with my feet. My Mommy sat on the floor in front of me and we made smiley faces just like we have been practicing at home. She looked pretty funny, but I didn't want to make her feel bad! Mommy and Grami said that I looked great in the pictures, but of course I know that already! Then we took pictures with Adam, Simon, Stesha, Mommy, Auntie Megan, and Dakota. It went pretty well. I cried a little, but I hope I didn't ruin it! Once those were done, my whole family tried to get a picture. I was pretty tired by then and started to cry. We tried twice, but I wasn't really into it. I think I heard Mommy say that we are going to try again on Sunday. That might be better. Then I won't be so tired! Other than that, it's been a pretty relaxing weekend. Well, I'll let you know how the pictures tomorrow go! Bye!
Thursday, November 27, 2003 8:05 PM ST
Happy Thanksgiving! Today was great! This morning we got to sleep in! That was fun. Mommy sure looked like she needed the sleep. My brothers, Adam and Simon, and sister, Stesha, went over to grami and papa's house to help fix Thanksgiving dinner. Mommy said to make something yummy. Maybe they'll make something for me. Mommy talked to my Uncle Lorne and Aunt SueAnn and they talked about me, of course. I guess they talked about everyone else too. :) Later, after my nap, my Mommy, Daddy, Adam, Simon, and Stesha, all went over to my Grami and Papa's house for Thanksgiving dinner.. Yum! My Grama (great-grandma) and Grampa (great-grandpa), Auntie Megan, cousin Dakota and cousin Brian from Los Angeles were also there. The table looked so neat and there was sooo much food. I had wide eyes and Mommy knew I just wanted to eat everything! I signed to her that I wanted food and she got me peach yogurt. Yuck! I normally like peach yogurt, but with all the food I saw, who wants that? I kept pointing at the table and she finally gave me some yams. I wasn't sure what I thought. They looked yummy. Finally, I ate a few bites, but then I got really congested sounding and Mommy wouldn't give me anymore! :( Grami sounded a little worried when she asked if I was alright, but Mommy told her that I was fine. Everyone kept eating, but I think Grama was watching out of the corner of her eye to make sure I was fine. Mommy laid me on the couch and a bunch of drool came out of my mouth. After awhile I felt better and mommy played with me. Whew! You know I felt better after that! Later my cousin Dakota (she two years old like me) came over to play. Usually I cry when she comes near, but not today. Today, I gave her one of my cars and she would play with it, then give it back. It was kind of fun and I know that made my Mommy happy that I was playing with Dakota, not crying! Everyone ate a bunch of food, then had pie for dessert. By that time Grama was playing with me, so I didn't even care that I didn't get any ice cream. Maybe later, I'll get some. My Daddy bought me some soy ice cream awhile back and I love it. Mommy says it's like Ben and Jerry's Cherry Garcia, whatever that is, but it seems to mean that it's really good! We came home in the afternoon and Mommy gave me some milk. I think that she's hoping that I will fall asleep early. I did only have one nap. Oh well...I was having so much fun. I love it when the family all gets together!
Wednesday, November 26, 2003 11:36 AM PST
Well, it's almost Thanksgiving (or at least that's what I hear everyone talking about!) I huess that there is going to be lots of food. Yum! I wonder if mommy will let me eat? I tried some fruit loops and goldfish yesterday, but didn't like it when they were in my throat. I keep hearing mommy say that if I would learn to swallow better then I would really be happy! I would like that because there is all sorts of food I would like to eat. Everyone has been working with me on sitting and rolling. I roll over all by myself again and I don't cry when I am sitting for awhile. My mommy was cracking up yesterday because I was making funny faces at her. Well, actually she was making funny faces at me and I was making them back, but anyway, she started to laugh and I started to cry. She felt really bad for scaring me, but it was nice to hear her laugh! All the other kids seems to be doing well. I guess school keeps them busy, but they seem to be having fun too! Have a Happy Thanksgiving! Maybe it'll snow again!
Sunday, November 23, 2003 2:34 PM PST
Things have been going really well. My mom has been telling everyone that I need to be worked a little bit harder. She's making them help me roll over more..sit up more. I guess it's getting better. I am not crying as much when they make me sit up on my own. I guess it's pretty cool. At least I can pick my own toys up when I am sitting! Today I went and watched my mom play soccer. It looked pretty cold outside so Daddy and I stayed in the car to watch from afar. It looked like a lot of people just running around. If it's to cold for me to be outside, why was she outside? I'll have to ask her that when I'm older! Stesha, Adam, and Simon have all been busy with school. I guess when I'm bigger I'll have to worry about that, but for now it's just cars and books! yipee! Nothing really to report. I know that mommy and daddy are kind of worried because everything has been going so well. I just wish I could tell them that eveything is great and don't worry! I am getting so strong! Well, I'm going to go...I'm pretty tired! Talk to you soon!
Thursday, November 20, 2003 12:00 AM PST
Today was a very exciting day! I slept in a little (which was good because I needed that full nights sleep after yesterday!) and mom woke my up around 8 am. She was in a really big hurry so she gave me my treatment and meds. I finally remembered why she was rushing about, today is Wednesday....physical therapy! I always make a fuss about going to physical therapy, but I know that Kim really likes me and wants me to get stronger. We were late to therapy because of these funny white flaky things falling from the sky. I heard Mom and Linda talking about the snow (whatever that is!) and how it was making traffic really bad. The snow stuff was falling really hard and it covered the ground by our house! We got to therapy and Kim and I played with a few puzzles, swung on the swing, and then played cars on the peanut ball. I was pretty tired and the end. I worked hard. After we left therapy, I tried to get some sleep in the car, but I heard Mom and Linda talking about Speech. I seem to remember doing that long time ago. We left therapy and make the trek up to Shriner's Hospital to see Mira, the speech therapist! We had a lot of fun (well, after a bit. At first I wouldn't talk to her!) Mira showed me this really cool board that I could make talk, we colored with markers (my new favorite!), played with bubbles, and finally read a story! Mira and Mom talked about how great I looked, how strong I was getting, and so on. Such flattery! I think I heard Mira tell Mom that some time I could even try out a powerchair when I come. Boy, they are going to give me free reign? Look out! Well, I am really tired so I will talk to you soon!
Tuesday, November 18, 2003 10:08 AM PST
This has been a great week! I have taken over writing these journals because my mom puts all the silly stuff here. I want to tell you the really important stuff. Last week I went to see Dr. Nichols, my pulmonologist. He said that I am doing great! My lungs sound clear and he has decided to give me some new medicine that will help me not be so "drooly!" It feels great! I have so much energy! My mom complains because I am not going to sleep until very late (11:30 or so!) I guess I am turning into a night owl like her. I guess my nickname "boopi" which means owl in Turkish, is true! :) My brothers and sister are always trying to play with me! I love them so much! They make me smile. Last night, Stesha, my sister, kept playing and playing. I just kept laughing! They make me sooooo happy! I am growing so much that my mom had to go and buy me a whole new wardrobe! People joked because my mom likes to buy me things, but I really needed them. I have grown out of the other clothes. They were starting to feel like a second skin on me! Whew! I sleep so much better now that I have room to breathe! It's pretty cool. I got some new jeans and other fun stuff! Well, I should go. I'll write again soon. Please leave me a message on my guestbook!
Saturday, November 15, 2003 5:05 PST
Well, another day. Javad is just cracking everyone up these days! We got him a "Little Touch Leap Pad" for his birthday and he just loves it! If you ask him (with sign), "Javad, do you want a car or a book?" He always enthusiastically (sp?) signs "book"! He loves the pictures. but gets frustrated that he can't push the buttons by himself..soon.
Friday, November 14, 2003 11:47 PST
Well, the last few days have been really busy! Javad is doing great though. Today we went to see the pulmonologist. He said that Javad was sounding really great! He's always the one whose opinion really matters. We talked a little about how we can make this winter better than the last. It's hard because when Javad is doing good, he's great, but when he's sick, it's horrible and unfortunately that can happen really fast. We are going to try a new medication, Robinul, which I hope will dry him out a bit. We will see! Javad finally gained some weight! He weigh 19lb and 3 oz and was 35 1/2 inches long. Long and lean! :)
Well, as usual, I must go to bed. Thank you for keeping Javad in your prayers!
Saturday, November 8, 2003 9:15 PST
Well, we are already into November and Javad is doing great! We went in to get his ears checked yesterday(another ear infection...bummer!) and they said he weighs 19 pounds! I am not sure I believe it yet (I want to get him weighed at Emanuel just to double check!), but that would be so exciting that he's put on some weight! This is what we have hoped for...a long healthy stretch and weight gain! We are actively working on signs with him. He can say "Mommy", "Daddy", "book", and a few more. We need to find the sign for "car". Those are his favorite! For his second birthday, we got him the "My first leap pad" which he absolutely loves! He loves the noises that it makes. We are trying to figure out a way that he can push the buttons on his own. He gets a little frustrated! Well, I must go...the other kids are starting to stir! :)
Sunday, November 2, 2003 8:22 PST
Yesterday was Javad's second birthday. It's hard to believe that it's been two years! So many things have happened. Javad is doing awesome, is totally adored by his sister and brothers (and of course his parents!). We continue to be blessed and amazed by Javad and his spirit!
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