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.  Then...as 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 asleep...at 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 night...so 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 moments...it 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

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!!

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

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)

Oh what a Day..early June at C...HKD...It was everything I hoped it'd not be...as I remember what a day!!

OK...I just couldn't resist!!  A little levity in writing about a long and trying day!  An appointment opened up for Noah to have his botox with a rehab doctor on Friday...so we were out of the house by 8:30am to get to CHKD by 9:00am(which is a VERY super early hour for our late rising Noah!).  We got there, had Noah in his "room" and waited another almost 1 1/2 hours until they gave him his versed...a medication to relax him.  It's the same med that's given when you have a colonoscopy...you are semi awake, but forget everything after the procedure is over.  We waited another hour with Noah still fully alert until we asked for and received just a little more.  The doctor was afraid of the first versed wearing off, so 10 minutes after receiving the second much smaller dose, she went ahead with the shots.  Noah did fine, not totally relaxed, but very little reaction to the many shots.  The problem came when the procedure was over...Noah was OUT for the next 2 HOURS!!  David and I gave him high powered Mountain Dew in his g-tube....rubbed ice over him...NOTHING woke him up(but my poor baby had goosebumps all over his body).  The nurse told us she needed to get response of intentional looking at her from Noah and awakedness for 15 minutes before she would release him. It wasn't until almost 2:30pm, and a second batch of ice, that we kept him alert for 15 minutes. We got him out of the hospital and to the SUV... David was lifting 155lbs of "jello" into our SUV...his legs got twisted, I untwisted from inside the car and grabbed his shorts to help HAUL him in...we almost lost him to the pavement....he slept all the way home, still asleep as we got him out of the SUV(still a heavy jello boy), and continued sleeping until around 7 that night!!! It is a very difficult thing transporting Noah when he's awake and all conditions are great...extremely difficult, nealy impossible when Noah has surgical procedures.   It was an extremely long and trying day...but we learned an invaluable lesson about versed that day....Noah takes a while to respond to it, but definitely will not give Noah that much EVER again!!  The benefits to his shots will probably not be evident for a few days...I am hopeful that all the effort will have been worth it, and am hoping Noah will get at least a little relief from the tightness in his extremities.  I will say, when Noah was "out",  he was as loose as I have EVER seen him...I thought to myself how wonderful it would be to have his hands and feet like that ALL the time...someday:)!!  Oh what a day....love and blessings to you as we all continue on our journeys:)!!

Botox will have to wait....

Happy 22nd birthday, Hannah...you 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 swallowed...well...it 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 sick...so 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

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"...it 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 conversation...it was just another sweet moment of my wonderful Mother's Day weekend!!  Blessings!!