Yesterday

Yesterday was pretty darn stressful.  We are staying in Bellevue which is a ways from Seattle.  We had to be at the hospital at 7:45 for check in so I figured we needed be out of here before 7 in order to wind our way through the morning commuters.  Since 4 of us needed to shower, one of us was starting pretty early so I got up at 4:45 which was fine because I was wide awake anyways. We managed to get out the door just before 7 but then the hassle began.

When I went to bed, I hung my hearing aid on the outside pocket of my bag.  In the morning, I packed up my bag with the laptop, medical records, notes, etc for the day.  I thought nothing of the hearing aid, slipped the bag on my shoulder and headed out to the car then proceeded to throw it in the trunk and we were off, until the screaching halt when I realized I couldn't hear what the kids were asking me. 

I drove so fast back to the hotel, retraced my steps, scoured the trunk, the pockets, the hotel hall and then our room.  I prayed like mad I would find it since replacing a $1400 hearing aid was not part of my budget for this trip.  Thankfully it was hanging on the welt cord of the chair in the room. 

We got back on the freeway, took a wrong exit which added another 10 minutes to the trip.  By now, the kids are stressed, I'm fuming inside but trying to be happy on the outside.  We arrived only 10 minutes late for check in but that went well and we were on time for the appointments.  The next setback happened when they told the kids that only one was allowed in the room at a time.  They are use to sticking together but it was really better this way.  I stayed with the kid in the room, and the other two stayed a few corridors away entertaining themselves on their technology.   I'm glad they are older, I don't know what I would have done trying to juggle them alone if they were not teenagers.

Yesterday, we heard some things that were really hard to hear.  Their mitochondrial disease is progressing which I knew but needed to hear it from Dr. Saneto.  Unfortunately, there is nothing he can do at this point, at least nothing more than the mito cocktail.  There is a drug in clinical trials but it is being used as an end of life, compassionate drug.  It looks hopeful.  Out of 100 kids who had three months or less to live, only 4 have passed away and 96 are actually making some small improvements.  He said, when we get closer to 'compassionate' care, he would 'gene chip' the kids and hope for a detailed, confirmed, dna diagnosis because that's the only way to get on the list to try the drug.   There are so many things I am thinking and feeling about this statement but I am going to choose to discount it for now.  We are not close to compassionate care. 

Samuel- He is my healthiest but is having episodes when he is losing the peripheral vision of his right eye.  The doctor feels he is having ocular migraines.  They are painless but you lose your vision.  We are going to watch him and if it increases in frequency then he will need to see an Opthalmologist.  They offered him some ideas to get him through gymnastics without getting so tired so we will try some of those things when we get home.  Sam's condition is stable and for now, his biggest problem is the muscle fatigue, over heating and flushing of his skin.  

Shelbie- It was a hard day for her.  She will be having more tests done today and Thursday.  He thinks the nerves in her legs are creating the problems with pain, numbness and falling over.  She will go for a test where they measure the electrical current in her body and then they will have to insert long needles into her leg muscles as they run a current through.  It sounds horrible but I guess we will find out on Thursday.  She is also the one who we are starting genetic testing on for a disease the doctor is convinced they have called POL-G.  More on that later.  If that comes back positive then treatment takes on an aggressive form.  If that comes back negative, then Shelbie goes for surgery and has to have the muscle biopsy.  We won't know for three weeks. 

Spencer- He is having both mito problems and other problems that could not be identified yesterday.  His labs are all over the place and do not make any sense.  One draw, they point to one disease, a month later, a different one.  He does not know what to think about all of Spencer's issues so we will be consulting GI and an Endocrinologist to figure his stuff out. 

For this post, I will leave at this boring report.  Tonight or tomorrow I will write more about what all this means to me but for now, this is enough.
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