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
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Alex on Wednesday, Oct.6
Dane Thursday Oct 7th
Before Life Support was removed
Alex's Room
Thanks for all the love
It's so hard to feel another's pain. Sometimes the mother's pain seeing her children in pain is unbearable. I keep thinking of the joke of passing the labor pains onto the father during childbirth :). We can often handle it so much better!
ReplyDeleteHow scary about the fire. I'm guessing you are feeling very overwhelmed. THere are lots of people who love you! Can your home insurance help out with the carpet and the smoke smell?
Lots of love to you all. Call me if you need anything!
Love and hugs,
Susan
I will continue to have you all in my thoughts and prayers. From what I have heard Alex is a very strong person. He had a great mind and lots of fight in him. It is very hard to see someone you love in that much pain but out lord and savior had a plan. I often think about a quote someone told me once a quote from our savior " I never said it would be easy. I just said it would be worth it."
ReplyDeleteALEX:
ReplyDeleteWere you ever able to get and try an iPad? I got one for my son for Christmas and he's been playing around with different apps. One of them is called Inception, from the movie. It is a sound-based, dream enhancing application, or something like that. (It's not a game - it's something you listen to.) Conner thought it was pretty cool so he downloaded a copy of it to my iPhone. In the middle of the night when I can't sleep I usually go and sit on the floor and stretch and listen to music. Last night I turned on the Inception app and just closed my eyes and listened. I don't remember falling asleep, but I also do not remember being awake for very long. (Usually when I'm stretching my mind wanders and I spend hours just thinking.) Not last night. Nothing. No pain, no random muscle contractions, no tingling, nothing. I'm sure the sensations were still present, but my brain was focusing on the sounds and not the sensations. My mind wandered, but I don't know where it went. Quite frankly, I don't care! I hope it had a nice time because I was sleeping.
If you have an iPad by now or an iPhone, try the app! It’s kind of cool – sort of eerie, but cool. If you don’t have any iProducts LET’S GET YOU SOME!! An appropriately worded letter to Apple might get them to spread a little generosity down St. George way!
PARENTS:
I know it's hard right now. I remember my first holiday season post-strike. I was tremendously depressed. Thankfully I had all of my children around me! I believe that it is tremendously important to keep family and friends around Alex all the time. ALL THE TIME. Keep him engaged. Do not let him retreat into his own head because it will magnify all of the negative stuff he feels - physical and emotional.
I also remember my first New Year post-strike. I felt invigorated and determined not to let this thing beat me. (Because it was kicking my butt and I wanted to die.) I think this is when my anger set in and worked to my advantage. Alex will feel this anger at some point as well. When it sets in encourage him to use it. He needs a reason to keep going - a goal. Family? Friends? Graduation? Music? Girls? ??? Maybe this rejuvenation period, too, is around the corner for Alex!
Be ready, Kaleen, for anything and everything. That means you must not retreat into your sadness. I can feel your frustration and exhaustion and helplessness. You've got to move through it rapidly and be the strong, unwavering pillar to hold Alex upright. If you're a mess Alex will struggle. Take care of yourself so that you are ready. Do what you enjoy so that your mind can take a break from worrying about your son.
As I read this latest entry on the blog and was in tears. I just want to hold Alex and take it all away. I am thinking of you all constantly. Many hugs from Boise!
I read this early today and just got back to leave a note. Kaleen you are strong and will have all the strength you need when it is necessary. You will have time to rest when you need it and time to cry. I believe in your strength. I believe in your abilities as a mom. Alex will be blessed through your service and care to him. The road may seem so long but you can do it. Thinking and continually praying for all of you. Love alisa
ReplyDeleteI have never in all my life been so frustrated about what life has dealt us! I am frustrated that I can't find a job that pay's enough to let me go to work and let my wife stay home with her child! I am frustrated that I am having to watch a formerly strong, independent, and brilliant 17 year old feeling humiliated that he has to have his step dad play full time nursemaid to him!
ReplyDeleteI am GRATEFUL that I have the life of a brilliant 17 year old step son that I have the honor to help when he needs it! I am GRATEFUL that I have a woman who is so talented that others want to hire her talents, and that she then comes home to me! I am GRATEFUL that the Lord thinks highly enough of us to give us refiners fire after refiners fire! Most of all, I am GRATEFUL to our parents for all their help! Prayers and help, (both financial and physical) from all of our friends and neighbors, and to many people that we don't even know! We are GRATEFUL and we LOVE each and every one of you!!!
Alex is finally asleep! (had a pretty rough 48 hours) I just thought I would try to say how I was feeling right now!!! Thanks!
ReplyDeleteKaleen ~ I have been following your blog, I am grateful for your writings. As being a mother also, I struggle with my 8 month old daughters physical problems, which aren't even close to the struggles I read you are going through and it humbles me. I understand about feeling your childs pain and wanting to take it away from them. I hope and pray you will find the solace that is needed in your soul right now. Thank you for creating this blog.
ReplyDeleteAlex, You are amazing. I hope you will continue to find strength within yourself and within your family to fight this. Someone recently told me, a quote that went something like this: "Sometimes God calms the raging storm, and sometimes he calms his child during the storm, waiting for it to pass." I know if you reach you will find God to calm you as this trial passes. My best of luck and prayers to you all!!