180... or 360?

Noah had THE BEST day in therapy on Friday... the best he's EVER done.  So far, he has cried every session basically the whole time.  He cooperates, but he cries....makes for a very loooong 3 hours.  Friday he didn't cry ONE SINGLE TIME!  Me and Peggy (his therapist) both admitted that we had prayed and prayed the night before, that he wouldn't cry and would have a good day.  Well, God answered those prayers quickly.  :)  Mid-way through the session, me and the other therapists were discussing how great Noah was doing and they said, "it's like he's done a 360"... but then Peggy pointed out that a 360 would put us back in the same point, so we determined he did a 180...regardless of the degree of the angle, we were all THRILLED with the new Noah! :)  He walked on the treadmill for 15 minutes, while in the spider suit (basically, he's in a harness and has bungee cables attached to walls around the treadmill.) It allows him to stand without falling down, but gives him to sensation of walking by himself, it just assists with his balance.  He walked in a gait trainer ALL around the room, for probably 30 minutes.  He used a walker (it's like an old person's walker, where he holds onto rails on each side of him so he doesn't lose his balance, but there is nothing assisting him in holding his weight up) and he walked 135 yards (which was one of the goals she had for him to accomplish by the end of next week).  One thing that happened while we were there, is that an organization called Hand in Paw made a visit.  They are a non-profit organization that consists of dog owners that have put their pets through a training program that allows them to be volunteers to work with these kids (and other kids at Children's Hospital, locals schools, etc).  This couple came in with their dog, Godiva, who was a beautiful chocolate Cocker Spaniel.  Noah and the other little girl that was getting therapy LOVED Godiva.  They incorporated Godiva into the therapy session.  So, for example, Noah was working on standing on his own, while tossing a ball to Godiva and Godiva would catch it and bring it back to Noah.  Noah was having so much fun and laughing the WHOLE time at Godiva, but still working on standing.  Then Godiva would walk down the hall and Noah would follow him in his walker... as Noah would get close to to Godiva, Godiva would scoot back and entice Noah to walk further.  I thought it was such a neat program and so giving and self-less of these people to volunteer their time by allowing their pet to brighten these kids' day!  What amazing people there are out there! 

Bye Bye Diet

Saturday night, my mom, Jamie, and I discussed whether or not we thought Noah was benefitting from his GFCF diet.  He HAS made progress in several areas, however, we believe that it's progress he would have made regardless of what he was eating.  I personally, have never thought he had a gluten and/or casein allergy.  Our therapist wanted us to try it and see if we had results, so we tried it.  However, after 4 1/2 weeks on the diet, we decided to take him off of it.  I haven't noticed any changes in his behavior since taking him of the diet(convincing me even further that he didn't have the allergy).  So, life is much easier now that he's able to eat REGULAR foods! :) 

Therapy is going well, they continue to work him HARD and he is getting stronger each day.  Jamie came to visit this past weekend, which was great.  We took Noah to the galleria on Saturday and we did a little bit of shopping.  Later that night, we went to dinner at J. Alexander's while Mom and Carol kept Noah.  Then, he and mom went home on Sunday.  One thing I've realized is that I don't do well away from him for an extended period of time.  Even though I am with my aunt and my grandmother, I really miss Jamie.  But we've only got a the rest of this week and next week and then we're back home.  Plus, it is nice getting to spend this time with my aunt and my Nonnie.  I know one day, hopefully many years from now, when my Nonnie is gone, I will look back at these three weeks and appreciate that Noah and I were able to spend so much quality with my 83 year old grandmother!

SPIDER SUIT THERAPY BEGAN!!

Noah's therapy program at Children's began today and he did FAN-FREAKIN-TASTIC! :) At first, the therapist told me that she thought it was a bit unrealistic for me to think we could have him walking in three weeks, she said, "hopefully, we'll have him cruising furniture really well."  Then at the end of his session, she said she thinks she'll have him standing independently and possibly taking steps on his own!  She was surprised at how well he did.  WOO-HOO!!  He walked over 1000 yards in the gait trainer, he got in the spider suit, and on the treadmill.  He really did so great.  I'm just so excited!  The therapist was so positive and encouraging... I really like her. She said that she thinks him not talking isn't related to a cognitive problem but more likely related to him not having the strength and breath support to make the proper sounds.  (Which our other therapists in Huntsville have also said).  She said that he understands ALOT of what we say and she picked that up in just 3 hours of working with him.

On Saturday, when we were driving home from G'burg, my mom called me to tell me that Noah had figured out how to climb the stairs at my aunt's house and made it all the way to the top (about 15 or so stairs).  WHAT?!?!  This kid surprises me daily! :)  Since I've been here on Sunday, he's been doing it regularly and he laughs the whole way up.  It's like he looks at that set of stairs as a big ol' toy.  However, on the down side... I have to keep my eye on that kid because he's half way up the stairs before I know it.... or even worse, wanting to come down them, which he doesn't quite grasp yet.

And on one last note, Noah's been on the GFCF diet for 4 weeks now.  He's had this train that plays music and you can press a button and it will go across the floor.  You can also roll it on the floor yourself.  Noah has always just press the buttons, however this past weekend, he began playing with it and rolling it across the floor himself!  WOW... the therapists always ask about him 'playing with toys appropriately' and my gosh, I can't even begin to let you all know how happy it makes me that he has figured out HOW to plan with his train appropriately by rolling and pushing it across the floor.  So does this have anything to do with the lack of gluten and casein in his diet?  What about the climbing up the stairs?  I DON'T KNOW.  I think I'm going to keep doing the diet the whole time we are here in B'ham, maybe for another month and then take him off of the diet and overload his system with gluten and casein to see if he regresses or if there is any change in him and go from there.  I guess that will let me know!

My Poppaw went home...

Lindsay (my sis), Derrick (her boyfriend), Jamie and I made plans a month ago to go to Gatlinburg for a long weekend.  We decided to leave Wednesday night (when Lindsay got off work) and drive half way to Chattanooga, then drive on to Gatlinburg Thursday morning.  Wednesday morning we got a call that my grandfather (who has Alzheimers and has recently been put in a nursing home) wasn't doing good and that he probably wouldn't make but a few more days or so.  We were left with the decision as to whether or not we should go on or not... we wouldn't get a refund on our chalet, so we would lose a good bit of money.  My mom and dad both told us that we should just go on because Poppaw could make it through the weekend.  MY concern was leaving Noah with Mom when she's dealing with her dad dying but again, she reassured me that it would be ok, that my dad would help out and for us to just go on to Gatlinburg.  Because my grandparents live in Birmingham, we don't see them as often as we'd like.  We wanted to go visit him before we headed out of town, so Lindsay, Derrick and Jamie took off work early and we drove to B'ham on Wednesday to visit him at the nursing home.  Literally, my mouth dropped when I opened the door to his room.  He's lost at least 50 lbs. in the past 4 months and is basically skin and bones.  He was almost unrecognizable, definitely didn't look like my Poppaw.  It was pitiful and broke my heart.  We sat there with him, my grandmother, and my aunt for awhile and got to say our goodbyes to him.  Hospice was called on Wednesday but didn't get there until after we left.  Thursday we made it to Gatlinburg but mom told me around 3pm that Hospice said that he probably only had 24-48 hours left.  Then we all got a call a little after 7pm that he passed away at 7:05pm.  I will miss him very much but after seeing him on Wednesday, I KNOW he's in a much better place.  Poppaw was a wonderful Christian man so I have no doubt that he's at home with our Lord!  Anyways, after talking with  my mom and dad, they told us that they had everything under control and for us not to come home until Sunday.  However, we decided to come home a day early, on Saturday and then drove to Birmingham to join my family on Sunday.  The visitation and funeral was Monday.  Because of this, we had to cancel Noah's first appointment for his physical therapy.  My dad, Lindsay, Derrick, and Jamie all went home Monday evening, but my mom decided to stay for the week to spend time with Nonnie and her brother and sister.  Everyone seems to be doing okay, Nonnie has her moments where she seems sad but for the most part I think she's doing good.  Mom goes back home on Saturday, Carol goes back to work next week... so I think it will be great to help keep Nonnie's mind off of Poppaw that Noah and I will be here with her until the end of January for his therapy.  I plan on getting her out of the house on the days that Noah doesn't have therapy.  I wish it was spring time because my Nonnie LOVES gardening and would have really enjoyed getting out and going to parks and such. But it's not, so I guess I'll have to find indoor things for us to do! 

First Word!

Tonight, Derrick and Lindsay came by for a visit and Noah was sitting in Derrick's lap in the recliner. Jamie was sitting beside them on the couch and Noah turned to Jamie, reached for him and said, "Da-ah?" He kind of dragged it out into two syllables and it sounded like a question. We all jerked our heads toward him in shock! Jamie was so happy that Noah said "da" before he said "ma".  But I'm just so happy that he said something. It's such a HUGE thing that he was looking right at Jamie because that lets us know that he knows exactly what it means and that cognitively he knew what he was doing.  We know that Noah knows what a lot of words mean based on the excercises and things that we do to work on his speech... but I still worry about his cognitive development since he doesn't verbalize anything.  So this was so HUGE for him!!!  Noah's speech therapist wants us to make a huge deal and get really excited (which we do anyway) when he makes ANY sounds so that it will encourage communication so of course when he said "da" we all freaked out and started clapping and saying "yaaaayyyy!"  Noah had the hugest grin on his face! :) Hopefully it won't be long before we hear it again!

He has said "ball" a couple of times in the past when he's been playing with a ball but like I said it's only happened twice and the last time he said ball was several months ago. So technically this isn't his first word but I'm going to count it because I hope that he'll continue saying it more frequently than he has "ball".