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

Monday, May 9, 2011

The Girls are Back in Town

I started writing on Friday, but realized that Hannah's arrival home for the weekend was a surprise to her best friend whose graduation she would be attending, so I held off writing, and now it's Monday.  Sorry it has been so long since I last wrote, it has been a whirlwind week or two at our house!
 Emma arrived home from Brazil on April 29th...and we are thrilled to have her back!! Life has definitely changed with her return, and especially for Noah.  Noah has noticeably been laughing a whole lot more since she's been back...and with Hannah's return home last Friday morning, the laughter went to another level!!  Let me just say...I did not plan on having either of my girls home for Mother's Day, and instead...last minute...last week...had ALL of my children with me on "the day" was SO SWEET!!! To have the house filled with laughter all weekend was HEAVEN!!
  Hannah and Emma would roughhouse with each other, and Noah laughed hysterically...that was also SO SWEET!! But the coolest and funniest thing happened late on Saturday night.  Hannah had gone to bed, and I was trying to get Noah to sleep, so I turned off the lights in his room and the tv.  I was telling Emma about my swollen ankles, and she said she wanted to give me a foot massage...well massage away!!  So, we both sat on the couch and quietly talked while Noah was in the adjoining room(living/dining room).  At one point Emma and I said a couple things to each other which were personal, but pretty funny...and all of a sudden, Noah, who up to that point was so quiet, began laughing hysterically...and laughed...and laughed...and everytime we would repeat what we had said, he would laugh again.  Let me say, this was something that our crazy Noah, 4 years ago, would have found funny...and Emma looked at me and was happily surprised that Noah KNEW what we were talking about.  Sometimes, I think that because of his silence, you're not always sure what he understands...what he's thinking.  He watches tv shows and because he has watched a particular show's episode several times he will begin laughing even before the funny part comes as he KNOWS it's coming.  What was cool about this time, was it was something unsolicited, non repetitive, not spoken before, not expected...Noah was intently listening to our conversation and was totally engaged and aware of our every word...and laughed like crazy at our funny was just another sweet moment of my wonderful Mother's Day weekend!!  Blessings!!