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Showing posts from March, 2015

The Throbbing Scar....

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We continue to make slow and steady progress. Today Javad moved his arms, moved his head, and rocked his leg back and forth. These are small indicators that he is inside his body that is sleeping. It must be so frustrating to even have less control over your body that you are used to. So unfair for this boy who already has to do so much.

Tomorrow he will have an EEG and then we meet with the doctors. I have already said that we want to bring him home, and his small gestures reminds me why we are fighting for him.

Tonight my stress has hit the wall...i have a horrible headache and will write more tomorrow. For tonight we will sleep and tomorrow more will come...we continue on this journey, but tonight I am catering to my throbbing scar.

Slow progress...

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He moved his head...It was small but it was movement. Earlier today I thought I saw him move his hand, but shook it off thinking it was my imagination...Simon and David saw him move his foot. These are small baby steps...so small that some might not even see them, but I am aware...so acutely watching his every move.

Over the weekend I have experienced the gamut of feelings...I have felt the depth of despair, I have lost hope, I have felt anger, I have felt hope...I have cried and then gathered myself. It has been exhausting.

I can't remember a time when I have been so deeply exhausted. This is the kind of tired that is so deep that you ache all over. My legs hurt from the stress and anxiety and, frankly, no amount of anxiety medicine is controlling my inner turmoil. This path is foreign...I don't like it...but we're here and I am determined that we will get to the end of this path relatively unscathed.

There have been so many hospitalizations, so many times when I knew the…

Walking the tightrope...

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Some days I am wondering why I continue to write. Ironically, although there is not much that is happening, it seems that there is so much to say. Today there was no real response from Javad. He is sleeping. I told him that tomorrow I am going to hassle him. Although I know he needs time to heal, I am pressing down the panic inside, the part of me that is a naysayer. I believe that we are going to get our boy back, but I can also see in the eyes of the medical community that they are concerned.

The internet is a bad thing when you are worried...you can find support for almost any opinion you want. Yesterday's smiles were a glimmer of our boy, but I also wonder if the doctors will see those smiles as insignificant, as something his body was just doing. I felt Javad's eyes on me and watched him work to smile...I felt it was a breakthrough.

Then came today....when he slept. I look at my sweet boy and he looks like he is sleeping. It's so peaceful hearing him breathe in and ou…

A smile that speaks the language of hope...

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After yesterday's Doctor meeting disaster, I woke up this morning more determined than ever to get things straight. I was determined to let the doctors know what a train wreck their meeting was. In addition to that message, we were determined that Javad was going to heal. Their presentation could definitely use some refining. They should never (and I emphasized this...), never take away hope from families. One of the docs was totally shocked that this was our interpretation of the conversation, while the other seemed genuinely interested and concerned that the meeting had not gone off as planned.

This was my giraffe mother spirit coming out and giving the flying giraffe kick to medical professionals and letting them know who really knows the littlest boy best. There have been so may years of being told what people believe about Javad, how they see things moving forward, what their opinion is. What people don't know, especially medical professionals who have no experience with …

WWJD: What would Javad do?

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Today started out pretty well...Javad seemed to have a good night and, overall, things seemed to be going pretty well. David and Simon came to hang out with Javad so I could go on a field trip with some of my students. They played Laser Tag and had a blast. Nothing like watching a student translate directions into Somali, see newcomers come out of the game area with joy splashed all over their face, it was a great time.

Returning to the hospital was something else. Javad had an EEG while I was gone and the doctors wanted to talk with us upon my return. When the doctors want to talk (and then want to go to another room to have said talk), things don't look good. I have to say that it was one of the poorest executed conversations ever. As we know, Javad is still sleeping.We all want him to wake up, but I also want his body to heal. Needless to say, back to the doctors and our meeting. We sat down and the neurologist (who I had never met) begins to tell us that Javad is still showing…

New Attitude...

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Today I had an epiphany...while Javad was sleeping (and I was worrying about why he wasn't waking up, wasn't responding, wasn't making eye contact and the like) I realized that this is what he does when he's sick...he sleeps. When he was younger and in the hospital, he would shut down and draw into himself...it's the way he heals.

So I decided to get a new attitude...a fresh perspective. I know the doctors want him to wake up, want him to start responding, but I have decided that I need to let it go although not in the Elsa from Frozen kind of way.  This is my son, the boy who sleeps, the boy who watches Baby Einstein when he's not feeling well, this is the boy I know, not any other boy.

So...I've decided to take a different perspective...a new attitude. I am going to quit stressing out about my boy and just project the positive toward him. Tomorrow they will do another EEG to make sure that his seizures are being controlled. This is key right now to focus …

Hurry up and wait...

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Today was more waiting...waiting for the right numbers, waiting for movement, waiting for waiting. As I said before...I am not great at waiting. Patience is not my strong suit.

You might have noticed that yesterday's blog post was really posted at 3 am this morning. I couldn't sleep. Last night Javad was having some tongue flicking that I was worried might be another seizure. It lasted for fifteen minutes, which concerned me. Although the doctors came in and told me that the neurologist didn't feel it was seizure activity, I couldn't shake my feelings. The end result was me falling into a hard sleep early and then waking up every hour until finally deciding to stay awake at 1 am. After a few hours, I was finally able to go to sleep, although it was not quality sleep, that's for sure.

Today was a day that involved more waiting. We got his phenobarb level this morning which was 51, still not in the sweet spot of 40 - 50, but getting closer. It was finally decided tha…

Time will tell...

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We moved...

In the world of hospitalization, this is a step in the right direction.  Javad is still sleeping all the time and we are seeing only small pieces of our boy. The neurologist told me yesterday (since I am writing this pretty early in the morning) that they had inadvertently put him in a barbiturate-induced coma. The upside to this is that they have allowed his brain healing time, downside is that he has essentially been sleeping away the last week. They have been taking his phenobarb levels for the last 24 hours and they are still high. They want them to be between 40 - 50 and at last reading it was 58 (the highest was 71). They will take another level in the morning and, if in the 40 - 50 range, will give him another dose.

This has been a whirlwind as well as a roller coaster. My feelings are all over the map. I know that through the EEG they have seen differences in his awake and sleep cycles...he is responding to those around him, yet he is sleeping. It is frustrating. I…

The Tortoise and the Hare...our life in the PICU

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Do you remember the story of the Tortoise and the Hare?

There once was a speedy hare who bragged about how fast he could run. Tired of hearing him boast, Slow and Steady, the tortoise, challenged him to a race. All the animals in the forest gathered to watch.  Hare ran down the road for a while and then and paused to rest. He looked back at Slow and Steady and cried out, "How do you expect to win this race when you are walking along at your slow, slow pace?"  Hare stretched himself out alongside the road and fell asleep, thinking, "There is plenty of time to relax."  Slow and Steady walked and walked. He never, ever stopped until he came to the finish line.  The animals who were watching cheered so loudly for Tortoise, they woke up Hare. Hare stretched and yawned and began to run again, but it was too late. Tortoise was over the line.
After that, Hare always reminded himself, "Don't brag about your lightning pace, for Slow and Steady won the race!"
This …

And now we wait....

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Waiting is perhaps the hardest thing....I am not, what one would call, patient, but over the years, this boy has taught me to slow down...take the world in.

Years ago, when Javad was truly the littlest, he spent six months in the PICU at Emanuel. It was the old PICU, the one with no windows and the nursing station in the middle. I spent many a night talking with nurses, doing the crossword puzzle, having my life in the PICU. Each morning I would wake up and get ready for work, then come home to the PICU. It is not the beautiful place we have now at Randall, but it was home.

During that hospitalization, my friend Juli and I trained to walk the marathon. Each Saturday she would pick me up, we would go for our training walk and then she would drop me off at the hospital to be with my boy. We did this for six months of Saturdays, each week walking longer, strengthening our bodies and lungs to finish that final goal of 26.2 miles at the Portland Marathon. Javad was released in August, just…

Javad the Giraffe: Our Journey this past week

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This has been quite a week with the boy, one that can't end soon enough. As I sit here, thinking about what to write, I remember a blog I wrote years ago about the littlest boy and the giraffe. Javad is like the giraffe in many ways...gentle, peaceful, and highly prized. Like the giraffe, he is a unique creature, who is like no other. The giraffe communicates primarily in a non-verbal fashion, much like our boy. I was looking forward to spending our week, Spring Break, by going to the zoo, or the park, but Javad had other plans.

On Monday evening, Javad had an episode at home. He was unresponsive and David and Simon called 911. This is a first at our house, which tells the level of concern. The EMT's came and Javad required CPR. They figure he was down for four minutes, not a long time in medical circles, but to a father and brother (and uncle, aunt, grandmother, and mother on the phone), CPR for four minutes was an eternity. Once called, I began my journey home (speeding on t…