Tuesday, April 14, 2009

Sam's Amazing Update!

Dear friends and family,
 
I didn't realize how far out of touch you all were until Easter when I found out we had not filled in our own loving family on Sam's amazing progress in life and school.  For those of you left out of the loop, we are sorry.  It was not a case of out of sight/out of mind but a case of life at times is so "normal" I forget to share the steps Sam has taken to be "normal".
 
I will now try to bring everyone up-to-date starting from December.  Please forgive me  but I am going to list each month and depend on my trusty calendar for my memories.  Others please fill-in the gaps by emailing me or adding them to the Sam's page.
 
I read back over the last entries.  Sam started OT and Kathy (his therapist) was right.  The delay did not affect Sam's progress and he did very well.  He had some frustrations but nothing he has not overcome.  I have seen recently that he is still having short term memory difficulties and when checking with him about school stuff I need to be very specific about homework and what is complete and what isn't. 
 
December 2008-Sam met with his neurosurgeon on the 17th and had another CT.  Everything is looking great.  He will have another in January.  His doctor said no football, but he did say Sam could snowboard.  Which I said NO WAY.  We had quite a bit of snow in Salem during Christmas break and Sam went sledding with Cameron and Jeff up at the local middle school.  It wasn't a huge hill but the guys had fun and Sam got to be a kid, even with his funky helmet that he had to wear.  I did my best to let Sam do what normal kids get to do but I realized it will take me a while to let him go.
 
He will still meet with his Rehab doctor at Emanuel every six months or so until he is 18 and then will be see an adult TBI rehab doctor once a year.  I had no idea his follow-up would continue into his adult years  but looking back I understand.  With brain injuries there is the need to stay in the patient's loop to make sure there is no back-sliding and to help with any future problems should they arise. 
 
He continued tutoring but had his tutors switched and then lost some time between the start and stop.  His tutors were wonderful people and it turned out that his first tutor had been praying for Sam back in the days of the hospital, even though he didn't know Sam.  Thank you for your prayers. 
 
January 2009-Happy New Year.  Sam continued with his occupational therapy twice a week and made great strides.  His memory and reflexes improved when he did a test where he had to see the light and a number at the same time, call out the number and punch the light to turn it off.  Kathy feels he is well on his way and she doesn't think he will need to go for much longer.  We agreed that he would continue until the new semester started when he started school full time.  He is still in tutoring but we pulled him out of the Algebra online class.  It was just too much without a teacher on-hand to help him/us.  After talking with his counselor we decided that Sam would start Algebra next year as a sophomore.
 
February 2009-SAM STARTED SCHOOL!  He's taking seven classes; 20th Century History, English Literature, Science, Wellness I (Health), two Academic Study classes, and Personal Economics.  Yes, he is taking all freshman classes.  His academic study classes give him a chance to work on homework from his other classes with a teacher right there to help if he needs.  We can keep track of his grades and homework online so that is a good tool as long as the teachers are up-to-date on the website, which doesn't always happen.
 
Sam had an eye appointment in February with a neuroopthamologist who was a wonderful doctor and very kid oriented.  A great deal of his patients have suffered a TBI so he truly knows his stuff.  This was intended to be more of a precautionary visit since Sam had been detected to have some field cut vision while at Emanuel which was not treated as it is not considered to be part of his rehab.  After a couple of test the doctor felt Sam was good but decided to do one final light test which took about 15 minutes.  It showed that Sam indeed still have some field vision problems in the right upper quadrant.  He was fitted for special prism glasses that help the brain to interpret what it is seeing better.  So far our medical coverage has denied the claim for glasses and vision therapy but thanks to family and friends' donations made to Sam while he was in the hospitals there was money to cover the cost of glasses which Sam has to where while doing homework and computer work.  He has a follow-up appointment in April for vision sensory testing which takes about two hours and thankfully our HMO is covering. 
 
Sam has been preparing to go on a spring break mission with our church.  So we have  been volunteering at the church to earn money towards the costs.  It has been fun spending time with Sam and his friends.  The high schoolers have a huge garage sale in March and much time has been spent sort and pricing the donated items; which filled three semi trailers.
 
Sam has been experiencing headaches that hit fast and missed the second week of school because we/I didn't catch it in time with meds and it hung on for days.  He slept a lot, we kept the lights low, and he didn't get to watch a lot of t.v.  Oh, caffeine and energy drinks are pretty much in the past.  His pediatrician going to talk with a neurologist about possible future medications that we can give Sam at the start of a headache so it doesn't get so bad.  He also has Excedrin migraine at school now so if he gets a headache he can go straight to the nurse, take a pill, and lie down if he needs to. 
 
March 2009-The first six weeks of school have gotten here.  The time has flown by.  Sam had four A's and three B's on his mid-semester report card.  He has had some difficulties with a teacher or two but he is learning that is par for the course.  He really enjoys his English Literature teacher most likely because I think the teacher is a big kid and keeps the class engaged in the class.  He recently read Romeo and Juliet and then watched parts of the old movie (mmm 1980s) and the new one (2000?).  Sam enjoyed the newer version  but then it had machine guns and "boy" stuff.
 
Sam is continuing to adjust to school.  He has a group of friends from church that he eats lunch with and even has class with a friend from his WCS days.  When he has homework he gets right to it when he gets home and then does fun stuff.  He has walked home from school on sunny days.  He has taken a couple of wrong turns or not taken a turn at all and has ended up walking farther than he needed but he has made it home.  The first couple of times it took him almost an hour and I did start to get worried but that's what cell phones are for.  Now he makes it home in about 20 minutes.  I take him to school but as the weather gets warmer I may have him start walking there as well. 
 
Both Sam and I are working towards our mission trips during spring break.  Sam will be heading to Tacoma with the freshman class and I am headed to Costa Rica with my "sisters" the Darling Disciples.  I have gone to the beach without the boys but this will be the first trip where I won't be there for Sam and of course it is out of the country.  We have been praying for my strength at letting Sam do this and having faith God will protect us both and bring us home.  I leave two days before Sam so Cameron has been in my prayers also as he will have to carry the responsibility of making sure Sam is packed, ready, and gets to church on time.
 
We have tickets for the Ducks vs. Beavers baseball game on March 27 but will have to see how we are feeling.  When I  bought the tickets I didn't realize I would be getting home that same morning very early and Sam in the afternoon.
 
A new malady was detected this month.  I noticed one morning that Sam's left shoulder was quite a bit lower than his right.  Now, we had noticed this before but had blamed it on a shoulder injury from a fall in August of 2007.  This was different as it is more pronounced.  I had looked at Sam's neck and had him bend forward and saw that he had a knot at the top of his spine something that I knew was not there before as he had had his spine looked at while in physical therapy for the shoulder.  I couldn't tell how his spine looked but I knew the knot was not usual.  We got Sam in to see his pediatrician ASAP and he sent Sam for x-rays immediately.  A complete film was done on Sam's spine from his C1 to his pelvis.  The radiologist and pediatrician diagnosed scoliosis.  I didn't panic but did feel bad that Sam had to go through something else with his body.  His pediatrician processed and got approval for Sam to see a back specialist to review the films and give Sam a checkup.  We will be seeing him at Emanuel in April after spring break.
 
April 2009-Wow, it's already April.  Spring break is over.  Sam had a wonderful time in Tacoma although a mom on the trip watched him to carefully to his liking and made sure he was safe.  Now Sam has gotten very good at self-monitoring and I trust him pretty well but I was glad that he had a mom on the trip since I was so far away. 
 
It's been a week since Sam had his appointment with the doctor at Emanuel and his diagnosis is great.  He has a 19 degree curvature of the spine mostly due to irregular vertebrae at C7 which is where the knot is also.  The films showed that Sam's growth plates in hips and pelvis were almost completely filled in which means he does not have much more growing to do.  This is great as curvatures of the spine are not considered abnormal until they hit 50 degrees and once there is no more growing done the curvature does not get any greater.  So we do nothing.  No braces, no surgery, no standing on his head (joke).  After what Sam has gone through I imagined all sorts of things but not that we would do nothing.   The back doctor deemed him healthy, I shed some happy tears, and we met my mom-in-law for lunch. 
 
All is well with our world.  Sam is still getting headaches on occasion.  His pediatrician and I talked about meds and the neurologist suggested a couple of options for medications but they were drugs that are taken for seizures and a side effect is they keep the patient from getting headaches.  I nixed that idea and his pediatrician was happy.  I truly can't see treating Sam for something he isn't having in hopes off keeping away something he gets infrequently.  Mmm, does that make sense. 
 
The Excedrin migraine seems to do well as well as Sam takes it ASAP.  He hasn't had any long term headaches so we must be doing something right.
 
Sam has the vision sensory tests this Thursday, April 16 and I will post immediately after we have the results and if Sam needs to do vision therapy.  It would mean going to Portland possibly once a week but that is a small price to pay. 
 
I know everyone has continued to keep Sam in their prayers and hearts.  There is a saying that it takes a village to raise a child and in this case its taken more people than I can imagine to heal our Sam.  I still find myself staring at him and smiling.  Sam tells me I have an abnormal affection for him especially when I want to give his scar a kiss or just touch his head.  I don't thinks so, it's my way of praising and thanking God that Sam is here for me to be affectionate to, and letting Sam know that he is blessed and is our blessing.
 
Sam isn't taking his survival lightly but also doesn't dwell on the what ifs.  He'd still like to punch out the guy that ran them off the highway but I think that is pretty natural.  I'd do so much more if I could.
 
I will confess Sam has had an energy drink but not often and we have switched to drinking Diet Coke caffeine free. 
 
Well that's it for now.  I'll post this and then have more to write, which I will.   
 
 
 

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