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!!

A Day of Remembrance and Thankfulness

Today is the four year anniversary of the day Noah was struck by lightning.  It is a day that in many ways, I can remember as if it were yesterday.  The skies have been dark and there has been some rain today, but right now, at 6pm, the skies are bright and sunny.  The girls have remarked that every year , on this day, there is always rain.
 It is hard to believe that it has been FOUR YEARS!!   Wow...how time DOES fly!!  It has been four years filled with the same things your lives have been filled with...sadness, happiness, craziness, adjustments, laughter, and tears...but some things have been constants...faith, hope and love!!!  We serve an amazing God, have an amazing son, and  amazing families both biological AND spiritual!! Although life is sometimes a challenge, it is always filled  with the knowledge that we are such an incredibly blessed family!!!
We celebrate Noah's life today...thankful to our amazing God, that He's given us another year to love and enjoy our baby(ok...my words, not David's)...our son(that's what David would say:)!!)  We love you....

Thinking on Paper

Since I began writing Noah's updates, many moons ago, I told David that the one thing I DON'T want to do is to speak before something happens.  What I mean by that is that sometimes it "appears" that Noah is progressing in an area, and then the very thing that I mentioned, I don't see again after I've written about it.  I just get soooo excited over seeing something that I haven't seen before, that I have to blurt it out...only to feel bad that, for whatever reason, it was a one time or many time thing, but not a lasting thing. Maybe someone could explain it to me...or maybe there is no explanation....hmmm.    The last couple weeks though, I have been seeing some really cool things, and I am hoping they last and continue.They are things that have been continuing to happen more than once...and appear to be consistent from day to day.  I'd like to say I want to blurt them out(and I will), but with cautious optimism and with thought of having you pray that God will increase and continue....something IS connecting in Noah's brain...and I want to  share for prayer and as encouragement.
Noah has strong tone.  Tone, as I understand it, is something we all have.  It is the thing that keeps us from being limp or stiff, our brain keeps our tone from being too strong or too weak...our tone is just right to enable us to do what we do...walk, touch, move our hands and feet.  Noah's brain is not sending the right signals to his hands and feet, so they are stiff...super stiff in some areas and more on his right side.  Bending Noah's legs has been at times a struggle.  I am pretty strong(I can lift Noah...off the ground:)!!)...but at times trying to bend Noah's right leg can exhaust me.  The very cool thing is that lately, in a moment of exhaustion, I stood there and said to Noah,"I am too tired and refuse to bend your leg.  I am going to wait until you relax and allow your leg to be bent!"  Oh ye of little faith...I can't say that I actually believed that he would relax, only that my words would give me a moment or two to collect my wits and my strength and try again.   Within moments, I felt his leg relax and with ease, I bent his leg.  In the past, no matter my words of encouragement or request...the tone would not relent...there was no change of stiffness.  Now, whether in his bed, or in his chair, after my request, he has relaxed his leg and allowed it to be bent.  The same thing has happened with his left arm, as well...and not just once, many times.  There are numerous incidents and moments that have reinforced to me the belief that Noah's brain is starting to respond...be it in small ways, but respond...and to me, as always, HUGE!!  It is so cool watching his face as I get excited and encourage him with my praise, he has a look like he knows he has done something wonderful and smiles...oh how I love it:)!!
I hang on to the words spoken by one of his therapists a couple years ago.  She said that the tone in Noah's body would have to decrease to allow the muscles to become the stronger "voice" and begin working.  The tone is still strong, but I think there is some "voice" or signal that is starting to connect in Noah's brain to tell his muscles to relax...not all the time, but when he thinks about it ...like when I ask...hmmm...the mystery continues...but I have not been so excited or encouraged in a long time...thank you for praying...pray that it continues, and that Noah's brain will continue to heal.
I hope your week is joyfilled with opportunities to speak words of kindness  and Love...and give smiles to those who need them(not just those that deserve them:)!!).  We love you very much!!  Lisa

Noah's getting it!!

Last week I was talking about how I'm beginning to ask Noah to look at things.  Every morning before we do anything else, I give him a "quiz" by asking him to look at a number of things.  I continue to ask him to look at the same things, but in different order.  Today was funny but thrilling for me!  I asked him to look at his tv.  He kind of rolled his eyes, at which point I reminded him that we needed to finish this  before going on to anything.  He then quickly glanced at the tv, then right back at me.  I was thrilled because he didn't look at his puppy calendar first and his tv is NOT an easy thing to look at...it's across the room at an angle, so it was very purposeful!!!  I then asked him to look at the window...THEN he looked at the puppy calendar, then back at me. OK...a little disappointing, but I reminded him that he KNOWS where the window is...and to please look at the window...his window is on the side of his bed opposite the one I was standing on.  He then turned his head and looked at the window...almost like, "I know where it IS....ok...I'll look at it." I sometimes wonder who's testing who...
I am going to try to sometimes write about the little things, as Noah's life is FILLED with little things, but to me, they are big...  Just before writing this, today, I gave Noah a Dove chocolate(ok...I gave myself one, too:)).  With every piece of food I give Noah, I make certain that when I put the food in his mouth, I put the food over to the left side.  It is really habit and I think somewhere long ago, it seemed that he ate things better on that side. Noah's tongue has not been able to move food around, so if it lands on the tongue, swallowing "as is" is almost certain....until today!! I put a piece of the Dove in his mouth, and missed the left side, and saw his tongue MOVE IT to the left side, before he closed his mouth!!!  I was sooo thrilled...ability for mobility of his food is happening...so small, but so huge...and just another little step to healing!!  Much love to you, today...blessings...hope your day is wonderfilled!!

Pictures of Noah

I decided to try and take some pictures of Noah...someone at church told me last week that we needed to update his photo at church.  Well...maybe if it were Hannah or Emma taking a picture, he might have cooperated, but when I ask him to smile...this is what I get:

 Keep my camera on him while he's watching SpongeBob Squarepants, and this is what I get:

It seems to take a lot to get him to laugh at me or for me, but TV, the girls and David he's a laughing machine...but I will say, no matter how or with who it happens, it's music!!

Noah's first office visit with Lynne

Today, David and I took Noah for his appointment with his rehab doctor. There was no "real" reason for our visit, but these are required to update prescriptions and the like. It was a cold rainy day here, and Noah had goosebumps on his arms. He got weighed(gained 2lbs...157) and is scheduled to have a botox treatment at the end of May to help loosen the tightness of his arms and hands. We bit the bullet and asked to get a permit for closer parking for Noah...on days like today, even though we temporarily parked our car in a disabled spot, I had to move our car during the appointment. We learned some VERY sad news today, though. Noah's rehab doctor, Dr. Thorogood, will be moving out of state in the next number of months. We saw her assistant, Lynne, today, and she told us of the doctor's departure. Dr. Thorogood has held a very special place in my heart, especially, from the beginning of Noah's injury. She listened to me, questioned what I questioned, changed things that I wanted changed and couldn't get changed with any other doctor and aligned with our hope for Noah...the thought of seeing another doctor would never occur to me. She will administer Noah's botox in May, but that will be the last time we see her. We love her assistant, but she is not a full fledged doctor, so we would have appointments with her, but also be required to have some appointments with the rehab doctor. Please pray that there will be a great doctor to come and take her place...we were told there is no one at this point...our God is able to do exceedingly, abundantly, more than we could ask, think, or hope for...we shall see.