Wednesday, May 25, 2011

Botox will have to wait....

Happy 22nd birthday, are dearly loved!!!  Just had to put that in here:)!!

Noah was scheduled to have botox shots yesterday morning at 8am. Shots are administered into Noah;s wrists, hands, arms and heels to help relieve tightness in these areas affected heavily with tone.   At 3am I was awakened to Noah's moans.  I vented his stomach via his g-tube and went back to sleep. I was awakened at 5am to the sound of Noah throwing up.  His stomach was empty...before botox, there is no feeding after 12 midnight, but his stomach was full of gas...I vented his stomach,  and decided to sleep in the lazy boy next to his bed...staying close until I was sure he was sleeping.  He fell asleep around 5:45am... then a little after 6, David woke me up to get ready to go to the hospital. I told David of Noah getting sick and after talking to the doctor, he cancelled the appointment...would have to reschedule. The botox procedure involves anesthesia, so any sickness...known or unknown could make administering it risky.   I must admit...this was a HUGE disappointment, as we had waited a long time to get this appointment, this would be the last appointment with Dr Thorogood before her departure, but most importantly, because the botox would help alleviate at least some of the tightness in Noah's hands and arms, something he and we so desperately need. Not exactly sure why Noah gets sick, this is the second time in the last couple weeks...normally it's once in 6 months...almost went a year once, so it's rare.  The only thing I can surmise is that he gets too warm(although he sleeps with just a sheet and tee shirt lately since it has gotten warm) and doesn't know how to cool down...can't express himself or uncover himself...I think he gets kind of upset and swallows lots of air.  Noah rarely burps and not being able to burp all the air he has all makes for one really upset stomach.  Both nights, I took his shirt off and turned on a small fan, and he was fast asleep.  Last night he was again awake until 5am...I slept on the chair again, but he didn't get tonight, no shirt the fan on...and hopefully he and I will both sleep.

The biggest challenges I seem to have  in caring for Noah are being able to know "what's up" with my boy...the signs are not always so easy to read, and with no voice to tell me or ability to move his hands to show me...often times,  trial and error are all I have.  So I err, but I keep on trying...

No word on the computer...stay tuned:)....

God is faithful...I don't always have what I want, but I always have what I need...and I am so thankful!!!  Abundant blessings to you:)!!!  Lisa


  1. Lisa,

    You are doing such a great job as a mother, nurse, interpreter, therapist and ............ uh, I'm tired just thinking about it. Very few people can wrap their arms around the amount of work you are doing and the dedication to family that you have in your heart. I do, though. I watched my family do it for me. Remember to breathe. Give Noah a hug from Idaho!

  2. Lisa,
    visiting after looking at your cards which are FAB, my heart is filled with admiration for Noah, you and your family in dealing with something that was so unexpected and a rocky road.
    My own boy is 11 just now and it is so easy to go through a day without thinking of how special he and my 2 girls are as we rush about with our busy lives. You've made me think about things a wee bit different. Your words inspire me,
    SOunds like Noah is a bit of a character with a great sense of humour. My own loves SPonge Bob too. I hope Noah feels better soon and gets his botox.
    Love from wet (Wish I could say Sunny) Scotland,
    Claire x

  3. My Lisa you are such a devoted Mother a rock i cant imagine what your family have gone through it brings tears to my eyes you have my admiration arrived here from your card blog and i do understand about your haven i just hope for you that you get the botox treatment for Noah very soon in my thoughts Luv Sue x