Tuesday, July 26, 2011

First time in Four Years...to the Doctor because Noah is Sick

I am so incredibly thankful to the Lord that in 4 years time since Noah's injury, the only time we visit the doctor is for annual check ups, routine shots or therapy...well, once the ER to put his g-tube back in.  Noah has been one healthy boy all his life, and even since his injury...THANK YOU LORD for healthy children!!!(Emma told me the other day, that she remembers me always saying that while she was growing up...I didn't even remember...)  Noah had been sneezing and breathing strangely for the last number of days, though, and any sounds he would make would sound REALLY deep.  He had not smiled in many days, and even though I had given him benedryl to help his nose (and that explained why he was sleepy and groggy), he was just NOT himself...very quiet...not a smile, a laugh...sort of motionless.  He had trouble sleeping, and yesterday when I tried to suction his nose, he sneezed green and yellow gunk...ewww.  After talking to my sister, Rebecca,  I decided to call the doctor and get Noah on an antibiotic. The call to the doctor's meant a drive to Deep Creek(about a 25 minute drive from our house).
David was going to help me get Noah to the doctor's, but seeing as he was in a scheduled 5 hour meeting at church and although he was willing to drop all and come home, Emma volunteered to come with me. She used to help me take him to therapy, so she's familiar how it works...I love that girl!!  Noah LOVES it when Emma is the one to pull him into the SUV after sitting him on the seat from his chair...he ALWAYS laughs...but never when I do it...it tickles my heart to see how Emma makes him laugh!!  Well, let me tell you...women rock!!  We got Noah into the SUV without dropping him and even hauled his 105lb wheelchair up into the back of the SUV...whew...I mean wow!!  The nurse at the doctor's office could not believe how tall Noah had grown and could understand why I had been so disappointed that I had to bring Noah in(yes, Dr D is a wonderful doctor and/but would not prescribe an antibiotic without seeing him)...a lot of boy to transport...YES HE IS:)!!  I told her that it makes me want to cry to think of having to take him anywhere.  I am 53 and menopausal so I attribute a lot of my emotional angst to my age and season of life, but it is very hard to get Noah places.  Not meant for sympathy or to complain...just reality.  Noah's lungs were clear...YEAH....but his nostrils swollen.  Nasal sprays and an antibiotic...I am VERY glad we went...now he's on the road to recovery with great peace of mind for me!!

Well...the cool thing about all of this.  We got Noah home, started the antibiotics...got him into bed.  When I finally got Noah situated for sleep, I went and layed down.  Then it began.  Noah started laughing...and laughing...and laughing some more.  I layed there and felt like someone had just turned on the most beautiful music!!!  I was tired and thought...you know, when my children were little, I would have yelled, "BE QUIET AND GO TO SLEEP!!"...tonight this was the most wonderful sound to my ears...I fell asleep to the sound of my happy boy's laughter...now that's something that make's me want to cry..but this time in a good way!!  Wonder if he was seeing angels??!!  Love to you...Lisa
EDIT: Lest I let anyone believe that I don't need or appreciate my husband's incredible help and his muscular braun...my arms and shoulders are very sore tonight...but women still rock!!

Monday, July 11, 2011

No AFOs for a While

We took Noah to his appointment last week for a new pair of AFOs(ankle-foot orthotics). Noah's feet were too full of tone and the therapist could only move his feet to a +5 degree of flexibility, not what she needed to cast his feet for AFOs.  His present braces appear to have been made at a neutral position for his feet, but because of Noah's tone, the therapist said she needs the bend of his feet/ankles to be at a -5 to -10 degrees(so she will not have to struggle with Noah's tone to get a perfect cast) in order to make the cast for his AFOs.  Sooooooo........Noah is going to have to be cast before he's cast...to have his feet put in casts to break up the tone a bit and give his feet more bend before he can be cast for AFOs.  Summer is not a good time to cast, for heat and sweat issues, so we will wait until the cool of the fall before getting casts on his feet. Casting does not hold good memories for me.  Noah's left foot(the strong tone side) was cast once while at Kluge when the thought was it would help to decrease his tone a bit.  Only a few days after casting, when the cast was removed to see how his foot was doing, and then to put another cast on, his foot were covered with sores, places the skin had come off because of Noah's strong foot pressure against the cast.  He had to wear moleskin for a week... and never had another cast on his foot.  The thought does make me a little apprehensive, as sores of any kind on someone like Noah can be harder to care for and can so easily become worse instead of better.    His present AFOs have been so good...perfect fit, no red marks on his feet after wearing for hours, they fit him like a glove(made at my favorite place, KLUGE!!), only his toes hang over the edges when he stands...so he WILL need some new ones...it will just be a while...and a wait. Until then, we will have another opportunity for a botox treatment that will hopefully continue to loosen his tone, I will stretch as much as I can, and I will continue to pray that Noah's strong tone will continue to subside and return to normalcy.  David called about the computer today...another answering machine...we will keep trying!!!!   Thanks for checking in with us, and thanks for your prayers...I am convinced that prayers are what keep Noah improving and what keep David, me and our family doing sooo great..thank you from the depth of my heart!!!.God is sooooooooo good!!!!!   Love to you!!!  Lisa

Friday, July 1, 2011

The Botox is Working!

It has been a couple weeks since Botox and there is a noticeable difference in Noah's arms...and even his hands!  The shots were administered in his arms, heels, and even back, but aside from his thumbs...the hands didn't receive botox.  It is much easier to raise Noah's arms...for things like getting him in and out of his chair, dressing him, and putting on his deodorant.  The interesting thing, though, is that in stretching his hands to put his splints on, I have been able to stretch his hands straighter than I can remember...in a very long time!!  When I would put the straps of his splints around his wrists, the strap would go to maybe the sides of his wrist and no further.  NOW, I can get the strap to the top of the right hand(and the right hand has more tone and is bent more  than the other hand.  The therapist once said that Noah's right hand would need surgery to  straighten.) and  can comfortably get it almost to the top of the left hand.  The left hand, surprisingly, has been more relaxed than the right, but doesn't seem to get even quite as straight as the right now...go figure!
  We are scheduled to go get Noah fitted for new AFO's...ankle-foot orthoses(orthosis= brace) next Tuesday. Noah has one pair that were made for him at Kluge in Charlottesville when he was first injured, but his toes hang out over the edge, and our wonderful neighbor fixed them when one of the bolts broke that keep the straps on the brace, so it is definitely time for some new ones.  They can be replaced as often as once a year...so I guess to have lasted 4 years is pretty good:)!!
  I called to check on the computer today...answering machine...maybe wel'll know something next week...I'll let you know when I do!!  What do they say...the best things in life are worth waiting for...I'm believing that saying applies here:)!!  Thanks for checking in with us...Much love!!  Lisabrace)ankle-foot orthoses (orthosis = brace)