As I sit here writing at my computer desk, the wind is howling outside, Lucy, our dog is curled up on the couch ALWAYS by my side, while Noah, on the other side of me, is sleeping peacefully in his bed.  A cup of coffee in hand…it’s a wonderful morning…and it’s been a pretty wonderful week!

The most exciting thing for me, this week, involves Noah’s hand splints…but I need to give you a little history to help you understand why.  When Noah was injured, he was given hand splints at CHKD.   They were pediatric sized, so he quickly outgrew them, although they were soft, comfortable splints.  Noah’s tone (stiffness, rigidity) increased, and his therapists suggested new splints.  The next pair he got, left red welts on his wrists, and could only be worn for short time periods1/2 hour to 1 hour at a time, so skin breakdown(sores) did not occur.  I eventually stopped using them, and for the last year, have used no splints.  I stretch Noah’s hands and wrists periodically throughout the day (which isn’t nearly enough), and although his hands/wrists had not become noticeably worse(but his hands and wrists are inwardly flexed) his hands/wrists had not become noticeably better.  Since ending therapy last year, I was determined to find a splint for Noah that would be good for his hands, and work.  We went to CHKD, and the therapist there gave Noah a hand splint for one hand, saying the other was, in essence, beyond help in it’s present condition.  We were told to have a specialist look at it.  There was talk of casting it, an 8 week intense series of castings, to straighten out the hand…neither option seemed right by David and me.  I went home, with the one splint literally “in hand”…heavy in my heart.   The one splint Noah had been given once again left red welts on his wrist after ½ hour of wear and although I loved how the splint positioned his hand …I felt there HAD to be something better!  I began researching hand/wrist splints, and the next time we took Noah for an appointment, I suggested two splints I wanted for Noah.  The therapist nixed one splint, but said the other had promise…possibility(the same company and splint as his very first pair, except adult size, COMFY splints).  I am so thankful to his therapist, who is clearly the professional, for not only listening to my suggestions, but actually giving value to my input as Noah’s mom.  He said he would be happy to order the splints and try them out.  Well, even though I had asked for them, when we got them home…I was a bit fearful and apprehensive…yes, I know, not good.  It was hard for me to put them on Noah…but I did…for a ½ hour at a time.  One day, a couple weeks ago, I put the splints on, and a few hours went by, and I had forgotten to take the splints off…NO red marks…I felt the straps aound his wrist…not tight at all(meaning his tone wasn’t fighting the strap)!!  For the last week, Noah now wears his splints for 6-8 hours straight!  He has a bent pointer finger on his right hand, that would pop out of the strap of the splint, but now stays down for the entire time while in the splint…it is getting 6-8 hours of stretching every day…I cannot truly express to you how thrilling this all is to me!!  His hands still have a long way to go…but at least we’re on the road, and not just parked along side it.  One of the things I love about these splints is that they have a spring mechanism on the underside of them that gives me the ability to gradually increase Noah’s wrist positioning to straighten it.  Thank-you, Lord, for perserverance, insight and favor…thank-you, Noah, for being such a champion!!

One cute, funny, and cool thing….This week, a friend prepared rabbit stew for David from some rabbits he had gotten while rabbit hunting(no one else in the house will eat it!).  Yesterday, when he brought it over, I told Noah to tell Hannah to have some rabbit stew.  I told him if he tried to speak the words, I would shout it to her in the other room.  He made sounds, then David came in the room.  I asked Noah, again, to tell Hannah to eat rabbit stew.  David and I watched as Noah made a long sound when I asked him to yell Hannah’s name.  Then I said, “Tell her, ‘Eat rabbit stew!’”…I told him, if he yelled a sound, I would tell her what he said.  We watched as he made a sound, then closed his lips in a “b” shape, and made a couple more sounds!  We were cheering, laughing, stood in amazement as he tried to talk!!  Hannah refused to eat it  despite her brother’s persuasive  attempt…wonderful fun, just the same!!

Oh how I can go on…..thanks for hanging with us, caring for us, and praying for Noah and our family….we love you!  Have a great week! Lisa

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Last Updated: February 26, 2010

From Lisa...

The days here in Southern Virginia have been cold, a little snowy, but cold.  It seems the little heater in Noah’s room is running nearly all the time.  David and I took Noah a couple days after our snowstorm to see his rehab doctor, and get his hand splints…two separate appointments in two different locations at Children’s Hospital in Norfolk.  Thinking back on the snowstorm, Hannah had said that we should get Noah out in the snow for a few minutes.  I nixed that idea, just thinking about the weight of him in his chair in a yard with snow and ground soaked with water.  I envisioned him sinking, and not being able to easily pull him out…and well, the vision was frightening, not to mention that no matter how warmly we dressed him, he would probably still be cold.  Now back to the appointments…the day was sunny…cold, but sunny.  As we wheeled Noah out to the car, his teeth started to chatter…”awwww, my poor Noah!”  Thinking back to that snowy day, I was glad I had said no to the taking him out in the snow idea.  Since the day Noah was born, he has always had a tendency to be cold, but his lack of movement tends to make it worse, sometimes.

The appointments went well; Noah got two cool hand splints, which I believe are going to help his hand positioning …especially when I fully figure out how to use them!  They are made with a spring-loaded mechanism on the bottom side that allows you to move the position of the splint to accommodate the position that Noah’s wrist is now in, with the ability to move the splint to accommodate improvement in the position of his wrists and hands.  The therapist said I will have to “play” with the mechanical devices to set them just right for Noah…but they seem to be a better fit, appear more comfortable and he is able to wear them longer with out discomfort (in the way of dark red marks due to the tone in his hands and wrists resisting the splints) than any others we have tried. I am hopeful!!!!

Noah continues to attempt to talk…there are moments when I snuggle with him, and he moves his mouth, his lips, his tongue, it is so beautiful, to me, he is trying SO hard to say something…I keep telling him, ”Don’t give up, keep trying, don’t get discouraged…I’m always listening, I always hear you, I don’t always understand, but DON’T GIVE UP!”

Yesterday, some of my friends came to visit.  They brought lunch and dessert (how sweet!!).  After they left, I took a piece of the Cheesecake Factory cheesecake in for Noah to taste.  It was a raspberry slice, and I must confess to eating about 3 bites of the slice, but Noah wolfed down the rest…. He LOVED it!!  Noah drinks teaspoons full of what I call lemon water, water with lemon and splenda, until he has consumed sometimes a half a cup of water!!  I gave him some broccoli cheddar soup yesterday, and he didn’t seem to like it, he made some crazy faces, and stuck his tongue out.  I had thought he would love that…not so much.  I would love to see Noah eating “better” foods, but getting fed through his g-tube his “protein drinks” (AKA formula), I know his nutritional needs are getting met.  I guess for now, it’s fun stuff to eat, and just eating and drinking as often as we can to improve his abilities… and the other stuff will come later.

Emma came home on Tuesday night and left Wednesday morning.  She was here to pick up the new used car we purchased to replace the one hit by another driver and totaled in early January.  The antics of her and Hannah had Noah laughing his head off…the two of them make him laugh hysterically…it was wonderful to see…if I didn’t miss her enough, that makes me REALLY miss her, Noah loves his Emma, too, he smiles and laughs for her like nobody else!!

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Last Updated: February 12, 2010

David will be out of town all day Friday and will not be back until after the office is closed. He sends his thanks for checking with us. Next week we will have a new update.

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Last Updated: February 5, 2010