Wednesday, August 24, 2011

My Amazing Noah

First, I must apologize for my lack of writing.  I could say it's been crazy, which it has, but it's ALWAYS crazy!  I have no excuse.  Did you ever want to write a thank you note but didn't. time goes on, you still want to write, but you feel so embarrassed that you have waited so long that you may have written it, but never send it?  Well, I have...MANY times.  THAT is how I felt about writing the last week or so on this blog.  The more days that would go by, I would feel more and more badly about not writing, but too embarrassed to write.  Well...I AM going to write...but it may be a long one, so you may want to come back when you have some time, or read in segments(oh, it won't be THAT long:)!!)
Well, Noah recovered from his sinus infection without incident.  He has since had a dentist's appointment where an x ray showed that 3 of his 4 wisdom teeth are coming in  and coming in straight.  One tooth, however, is coming in crooked, sideways TOWARDS his back molars.  The dentist thought that would be causing Noah discomfort and asked if we has noticed him in pain.  The only time we can surmise would be a problem for him is at night when trying to fall least we're hoping that's the reason for Noah's lack of ability to fall asleep.
 It has been a very tough month or so with Noah when it comes to sleep.  We DO go to bed late, but HOURS after the TV is off and I have gone to sleep, I am awakened every night(yes, EVERY night) by Noah's moaning.  I vent his g tube, sometimes roll him over, check for him being too warm, and go back to sleep...only to be awakened an hour or two later by his moaning, again.  I vent him, again, and go back to sleep.  Sometimes 3...sometimes 4 times a night...some nights I stay up with him until he falls asleep.  David seemed to think that his sleep pattern was messed up...and yes, with no sleep, it was, but there was no answer to what was wrong, or what to do.  I just couldn't understand why it took Noah all night to go to sleep.  He never seemed in pain, and when I would tell him to go to sleep, that I was tired, he would laugh! Then, after a very restless night and most days morning, too,  I would get him up between 12 and 2 yes...late, but considering our nights, I felt I was torturing my baby by forcing him to wake up...a vicious circle of no sleep vs. sleep... and he would fall asleep in his wheelchair during the day.  I have been extremely tired,  I get up between 8-9am  which doesn't sound early, but on average, I get 4-6 hours of broken sleep per both of us have been sleep deprived!!  Since the dental appointment, I have been experimenting with giving Noah some pain medication...and then the next night seeing if he needs it. With the pain meds, Noah has been sleeping better....much better....not perfect, but compared to the last month....MUCH better!!
We have a consultation with an oral surgeon this coming Tuesday to have the tooth pulled, I am hoping it will be done soon and all will go smoothly. It seems that we will probably go to CHKD for the extraction....we will let you know.   I am also hoping  that after the extraction,  Noah will have better sleep!!
On another note, I am excited!!  While working with Noah and his legs the other day, his right leg, the tough toned(rigid) leg, I told Noah that I was NOT going to be moving that leg and would wait until HE moved it.  Well....I kept my hand on his foot and one at his knee...and before I knew it...the knee was bending!!!!  I was not offering any strength except my hand on his knee and foot, but the leg was bending!!!  Slowly and not too far before I offered assistance to REALLY bend the leg to stretch it...but I can't tell you how exciting that was!!!  I shouted to Noah that HE IS NOW TELLING HIS BODY WHAT TO DO, his brain is connecting to his limbs!! Every time I have one of these is amazing and wonderful!!  There have been groups of people coming over to pray for Noah's healing every Thursday evening...well, let me say, we have AMAZING friends and prayer warriors, and GOD IS SOOOOO GOOD!!  The other day, I asked Noah, while laying in bed, to poke his dad while he was standing next to the bed.  Noah's arm with his curled hand, started to move towards David.  It went in the opposite direction for a second, and then kept going back down towards David.  Noah's fingers touched David's arm and we both cheered as Noah smiled that he had poked dad!!  HOW INCREDIBLY COOL IS THAT???!!!  Let me tell you, it was not that long ago that Noah could not move that arm no matter how many times you asked him( not having know how OR ability)...that is his more rigid, tone filled side and hard for ME to move...but HE DID IT!!
Have to get Noah to bed, but now that I have gotten something written and soon sent, I will be back to tell you of the earthquake we felt yesterday and the hurricane that's coming our way...stay tuned:)!!
Much love to you, thanks for taking the time to read...hope you and your families are blessed abundantly...thanks for your love and prayers!!!!!  Lisa


  1. CONGRATULATIONS! For all of Noah's achievements! Those brain to body messages that are getting through are so important. Keep up repetition if you can get it and NEVER be disappointed if you don't see it again for awhile. The pathway is there!! YEA NOAH!

    Sleep is difficult to find for all of us lightning victims - at least the ones I've spoken to. I'm not surprised that the pain medication worked because, at least for me, when I can't sleep, I am indeed in "pain". I put that in quotes because there is nothing that is actually hurting me. It's just nerve pain that won't go away. It can be an increase in the "buzzing" that I feel all the time or just a general discomfort. Sometimes the only remedy is medication, which I use sparingly. My doctor gave me a prescription for Lunesta. I took it every night for a week and it seemed to "reset" my sleep cycle. Now I only take it once every couple of months to again "reset" myself. I wonder if Noah feels the same things? If so, it's horribly uncomfortable and if I couldn't talk it would make me moan too!

    YOU, Lisa, need to get some uninterrupted sleep!! Please take care of yourself!! I can not stress this enough! I am in awe of you.

    Love to you all from Idaho!

  2. Wow, Lisa, what an exciting post! Thanks for sharing the news. I especially like the part of Noah poking his Dad, that made me smile big. :-) I hope you get a full night's sleep sometime soon. A good night's sleep makes things so much easier to bear.