Because......A day makes a difference

Alex slept Monday night until 4:30am Tuesday.  I left for work at 7:30am and when I came home last night it was like seeing another person.  Alex was feeling SO much better.  He had half the amount of pain pills than he did the day before and was feeling 2 times better.  Only things that were different from Monday was One- we weren't in Vegas anymore (sorry Vegas, he dose not like that city) and Two- he had a treatment from the Calmare machine  from Dr. Chalmers.  I got home last night and Dane and 2 other friends were over.  They were watching a movie having a good time.  Its so great to see Alex with friends.
Thanks for all the comments - I really appreciate them!!!!  They get us through the day.
Alex had PT and OT today.  He is doing so much better.  Its at a snales pace though which is frustrating sometimes, but its a steady pace none the less.  He hasn't used his wheel chair in a few days!!  Wahoo!  Today when we got to PT, he walked in, its such a great sight!
Oh and the smoke smell in our house only exists in Kiels room now (poor Kiel).  Dave cut the burned carpet area out of his floor its small - we think we will just patch work some new carpet in (poor Kiel) lol.  Have a good night - Kaleen aka Alex's mom

Recap of Christmas

Alex was treated by Dr Chalmers Christmas Eve prior to our Family Dinner of ham, turkey, cheesy potatoes, veggies and rolls followed by homemade brownies and ice cream.  We had a great night visiting.  At bed time we taped paper up across the stair well (tradition) so that no one could sneak down stairs and peak at what Santa might have brought.  We went to bed and woke Christmas day to lots of stocking suffer gifts for all 5 boys.  It was so nice to have all the boys home.  We sat around and ate and ate, it was amazing, around noon Alex started to hurt a little but not too bad.  By Christmas evening we were supposed to go to our friends Tim and Terry's house but Alex wasn't feeling up to it, so he stayed home with one of his friends. Then we all returned home and everyone  but me Parker and Alex went to see Tron.  They said it was good.  Alex wasn't up to going (which is'nt like him, he loves to go to movies). I had fun being home with Parker and Alex.  I had a great Christmas with my family.   Sunday morning was rough, real rough, we didn't make it to church like we had planned on doing prior to us departing to Vegas,  Alex had 2 doctor appointments in Vegas Monday am, so we were going to Vegas Sunday so my boys could see their dad for Christmas.  Alex wasn't mentally ready to go back to Vegas. It brought out some panic in him.  As the pain rose so did the panic they were feeding each other making him miserable.  I was told he didn't sleep most of Sunday night and so Monday he was  in constant pain his dad gave him pills every 2 hours to help, he was still in pain and very drugged up I was worried about him. I had had big plans of going back to UMC and the Ronald McDonald House to show Alex off - to show them that my boy could walk to show him where I slept and was safe.  But that didn't get to happen, He was in so much pain by the time we left the 2nd apt we just needed to get back on the road. Teresa that fitted him for a Compression shirt was amazing though.  Her father was burned over 40% of his body and due to his lifestyle change they started a family business helping others deal with their new limitations,  She was so kind to Alex and could understand his claustrophobic feelings while wearing the vest but was still able to explain why  it was so important to wear one.  His scaring is getting so out of control.  He has to wear these shirts.  She gave him 2 shirts to take home, one he wore all the way from Vegas to STG.  Its off now but he wore it about 4 hours,  We came home to a smoke smelling home, but grateful to have a home to come home to.  We got a call at 3am Vegas time from our one son that stayed at home saying he heard the smoke alarms going off, he went looking around the house and in Kiels room found flames 3 feet high and 4 feet wide.  A lamp had somehow fallen oven onto some fabric I had just bought to make him curtains and it was all on fire,  My son and his friend grabbed another blanket to put the flames out.  So grateful they acted quickly and that no one was hurt.  We will need to get new carpet in Kiels room, right now it is just airing out.  The whole house is airing out.  We unpacked the car then Amanda drove Alex over to Dr Chalmers office for a treatment.  We were trying to figure out how many days he could go with out a treatment - its about 24 -36 hours max,  Once Alex got home, he spent the next 2 hours crying in pain.  I too cried for his pain.  I don't know why he is having to go through this.  I don't know why he had to be hurt so bad.  I don't know why he must suffer the way he is.  Its breaking my heart.  I can't stand to watch my child cry like this, be in pain like this.  Watch him not be able to use his hands, not walk unassisted.  What are we to do??????????????????????
Thoughts that come to me are "be grateful" "be smart" "be clean" "be true" "be humble" "be prayerful".  So I hit my knees and stared trying to B the above B's.   Alex has now fallen asleep.  I pray he will be able to sleep through the night.  I pray I can be smart and get good help for him.  I pray I can clean my house and get the smoke smell out.  I pray I can be humble and most importantly grateful for all that I have.  For the wonderful holidays for the talented Doctors helping Alex.  I know he will get through this.  I know it.  - Kaleen aka Alex's mom

Alex says Merry Christmas

Sleep is Sweet

Click on link below then go to VIDEO- Teen hit by lightning trying out new device to deal with pain........

http://www.ksl.com/?sid=&nid=732&tPage=news

Thursday December 23rd

If you live in UT, watch KSL tonight at 10:00pm.  A story will be aired about the nerve machine Alex has been receiving treatments with.  If you don't live in UT, it will probably be posted on their website after the News at 10.  www.KSL.com

Rain Rain go Away

Our St. George Rainbow returns and gives us hope
12-22-2010

The streets are flooding, wind is blowing & rivers overflowing, thank goodness we are all safe in our home.  I'm so glad Alex isn't in the hospital during this storm and flooding weather.  Our community is under threat of homes being lost and I feel so bad for those families.  We drove around tonight to survey some of the river banks, grateful for City workers out there that are putting our City's needs first.

Alex's grandpa is back in town and has been taking Alex to his appointments the past 2 days.  Alex has been doing so much better and his pain level has gone down a lot, mostly due to the nerve pain treatments he's been receiving from Spero.  How can I be sure of this???  Because if he misses a day or two his pain is intense, more intense than "normal".  Alex didn't get treatment Saturday or Sunday and we didn't sleep much Sunday night.  KSL sent their Health and Science Reporter Ed Yates to St. George yesterday to do a story on the Calmare MC-5A machine, Alex was present during the interview.  I'm looking forward to seeing it (not sure when it will air,but will post it when it does).

I'm really looking forward to Christmas.  A reader of this blog sent Alex an AMX Gift Card, very very kind and unexpected.  (Thank YOU!!)  We went to the mall Friday night - Alex was a little hesitant to go in his wheel chair, but once we were inside he did great.  He decided that he wanted to use his gift card to buy his siblings and dad presents.  I was very impressed with his thoughtfulness. Someone gave to him and he in return gave to others.  I hope that this is the first of many giving experience Alex will have in his life.  I hope that through all of this misery he will learn to be of good cheer.
Alex saw one of his friends at the mall he yelled out his name - the guy turned around and looked at me and said who called me?  Alex said "look down here" (Alex was sitting in his wheel chair) the guy looked down and said "ALEX, you're Alive!!!!!!!!!!!!!!!"  He was so happy to see him.  We are all happy to see Alex and that he is alive.

Wednesday December 15th

Last night I walked in the house from work to the most beautiful site.  Alex, Dane and 3 other friends were sitting at our kitchen table eating Taco Bell.  It made my day, made me smile and I even told the 5 teenagers what a beautiful site it was (I got some strange looks - lol)
Alex has had a busy week again.  He has 3-4 doctors appointments everyday and is continuing to improving everyday, so grateful for the care he is receiving .  This morning was Alex's VNG test.  He wore "goggles" for about an hour testing his balance and inner ear.  The tests came back positive.  His balance issues aren't inner ear, which I guess is good.   Alex spent PT outside on the IHC Health & Performance "course" it was amazing to see Alex doing this.  The course has all kinds of terrain that people might encounter out in the community.  Alex walked the entire way from the building and back with out taking a break.  He went down a slope on a sidewalk, went up and down stairs, walked on asphalt, gravel, a stone walkway, bark, and sand.  He did great!  I followed them with his wheelchair, watching him brought all kinds of emotions out in me.  Seeing his burned/healed legs and his awkward movements brought sorrow yet joy for his life and improvements .  His PT was impressed, and told us afterwards he had thought Alex would have had to stop at least 3 times, thats why he had me follow. But that wasn't the case.  Alex went to Dr. Chalmers twice this week and thankfully we have gotten sleep the past 2 nights.  Lets hope tonight is good.

Yesterday Alex applied for an academic scholarship to Dixie State College with the help of his school counselor, Mrs. N.  She has been such a huge help to Alex keeping him on track since his Sophomore year.  If Alex hadn't done so well the past 3 years, he would be in big trouble right now trying to finish packets in order to Graduate on time with his Senior class.He only needs 2 more credits.   After he applied for his scholarship he spent some time with his Debate class.  He has missed school. Thanks to all the students for the awesome banners and to the Admin and Teachers for their love and support.  An Administrator from the Washington County School District came to our house today to help Alex set up a program on his computer that will allow him to speak into a mic and the computer will type the words.  That will give him some independence with writing his Senior papers.  Have a great day.  Kaleen - Oh and I'm freaking out that Christmas is 10 days away - where are Santa's elves when you need them??!!!