Saturday, March 31, 2007

Runnoft, Rabies, Hotlines...

...surely there is some explanation for this, some help for this. What you ask, well, check the time of this post. A long time ago, pre-John, even early John, this was a normal hour at our house, those days have long past. Or so we thought, evidently. John is jabbering happily running around the house in his gait trainer, he hasn't asked for shoes, or even ears, just to run, run, run, and now to take over and type on the computer. So at what age do you just let the munchkin have free reign of the house and go back to bed?

Thursday, March 29, 2007

Still home...

...thank goodness!!!

John's rough day yesterday won him a night of ceralyte and this morning he was looking better :)

He's still kinda tired but doing oh so much better, enough so that he got to go for a walk this evening and made it farther up the big hill than ever before. He even ate a bit through the day too!

The funniest thing of the day was when I was rearranging some stuff in the area where we take pics and John was sitting on the footstool trying to get his shirt off, desperately looking for the new one, silly boy. After all we were in the picture taking place so of course it must be time for him to ham it up in a new shirt.

Tomorrow is his 6 month dentist check-up, but his therapists are still on spring break so we're looking forward to a rather leisurely trip to Columbia and back, hopefully in time to get lots done at home and let a little silly man make his nightly jaunt through the neighborhood, on dog, of course!

Wednesday, March 28, 2007

Spring Break!

So far spring break has been rather, um, non-breakish! A dear lady we love from church had a heart attack during routine surgery and is still in critical condition, although more hopeful every passing hour. John has been fighting something, allergies, cold, not sure, but today it looks like it might be winning the battle. Of course getting his RSV shot yesterday didn't help much, sigh, I don't know if we will get to church tonight or be posting our next update from the hospital. Several hours ago, if I were a betting person, and I'm not, I would have said hospital, now, well, not so sure, but we'll see.

As you can tell yesterday he was looking pretty spiffy...

This is his new outfit that's currently up for auction. He loves it, actually, he loves any new outfit, especially any new shirt, we might be creating a monster here, but a cute one!

We have enjoyed a walk down to the park this week, John isn't as enamored with swings as he was last summer, but I don't think it will take too many trips for him to love them again. Tonight is our last Lenten mid-week service and I'm sure he'll be thrilled because tonight daddy is preaching, as opposed to preaching elsewhere and us having a guest pastor. We're serving dinner tonight, so the house smells of meatloaf, fresh bread and warm apple butter, the windows are open and the birds are singing, all evidence of spring being here wethere it was really a break or not remains to be seen.

Thursday, March 22, 2007

"I want more ice, please"

We have been working for several weeks helping John to string his signs together in sentences. He does this willingly, but always, until yesterday, only with prompting, at least that was the only way for him to get them in the right order. Last night we had dinner at church, and after Mark had left to preach elsewhere John and I were still sitting there visiting and he decided that he wanted more ice than I had. Once he got my attention John signed to me "I want more ice please" with no prompting whatsoever. Again today he was able to do the same thing, once straight and several times with the words not in the proper places in the sentences, but still understandable!

Tuesday, March 20, 2007

I'll wait for you...

...but I'll have to do something cute while I'm doing it!

Poor John, he needed to wait on the couch for just a few minutes while we got stuff ready for the bedtime routine around here and well, I just don't think he can help but be cute! He did this to himself, I'm sure it is a commentary of some kind, but as of yet I haven't figured it out.

Monday, March 19, 2007

Real hugs!

We finally have real hugs! And they are wonderful!!!!

John has never really given hugs, he figured out kisses a while ago, but somehow hugs were escaping him. He has been hugging his stuffed animals, but those he can wrap his arms around, so the concept of hugging someone that you can't wrap your arms all the way around was baffling him. Well night before last I was holding him and Mark came over and wrapped his arms around both of us and said 'hug' and John thought this was hilarious so we did it several times and then Mark held John and I hugged them both and voila the real hug was realized. Last night I was carrying John in to bed I gave him a hug and he gave me one back, and then another and another and then it was daddy's turn. Real hugs, what a wonderful thing!

Thursday, March 15, 2007

I said ... "ALL DONE!"

We have worked so hard for John to learn to sign that he was 'all done' with this or that, instead of throwing it in the floor, or just crying or what have you. Well today he showed us that he could not only say 'all done' but he could do it repeatedly, and emphatically! Desiree, John's Occupational Therapist was helping him learn the concept of 'big and little', he's not having a good time with this concept and isn't overly impressed with the whole deal. So a few minutes into this instead of signing 'big' like he was asked, he started repeatedly and emphatically signing 'all done'. Now, 'big' is signed by spreading your hands out to show big, if you talk with your hands like I do you probably are already proficient at this sign, and 'all done' is done by placing one hand, palm down, on top of the other hand, palm down, and then spreading them apart, think umpires and you got it. John's not overly distinct with some of his signs, albeit they are improving, but these two today were very distinct, and 'all done' was quite emphatic. He did finally settle down and give us the 'big' and 'little' signs and distinctions that we wanted from him, but still he would rather play than work, hmmmmmmm.....

Wednesday, March 14, 2007

Talking to myself

Well not me, actually, although I do that, but John now talks to himself. I noticed this last night as he was sitting in front of his bookcase with his mountain of stuff around him. His cup was sitting on a shelf, and whenever he decided that he wanted a drink he would sign 'drink' and then take his cup down, get a drink and put it back on the shelf. I watched for a while, thinking surely I must be seeing things, and yep, next time he wanted a drink there was that sign for 'drink' again before he would take it off the shelf. I asked his speech therapist about this today, wondering if this was a good sign or not, ever the paranoid mommy, and yep, she thought it was fantastic, a great show of comprehension that he's getting it! Woo hoo, so evidently talking to yourself, or signing to yourself in John's case is a good thing!

John has had a great day! Beyond great really, another sure sign that he is growing up and getting stronger. He modeled a new set this morning

Oops, I forgot to show you the last one

Anyway, after that we loaded him up to go to speech therapy. Today's the day that I take him and daddy stays home, well normally. Today, however, Mark was doing a funeral for the neighboring pastor who is gone on vacation, so we left the house and rushed Mark to Marshall for that and then John and I headed to Columbia. We were going early to meet the lady that bought a custom jacket from me at the auction for the Moog school last year, so of course I was worried that this much morning activity was going to poop John out completely. Ah, he's growing up!

Normally when we get to the school he gets excited and 'dances' in his car seat as we pull into the driveway. Today he perked up and got excited when we turned off the main road, onto the side street that we follow for a mile or so and then once we got to the next turn, still not where you could see the school, he started 'dancing' and squealing. I would like to describe this better but really, he looks as if he is trying to dance in his car seat, what with arms and legs waving around, he's got the biggest smile ever on his face and he's non-stop squealing with excitement. It's really hilarious and today I was treated to it on several occasions.

At school I talked to the lady about the jacket and John got to do his normal circuit around the gym 3 times. Well, okay it wasn't his normal circuit, normally he would come in the gym, race across it, down the hall, take a left, down that hallway, through the conference room (unoccupied always, thank goodness), and back into the gym and then he wants to turn and do it again. Well not today. Today once he came through the conference room the first time he headed back up to where the school is. This school is housed in the basement level of a very large church in Columbia, and it has two, one short and one long, wheel chair ramps between the gym and the school area. Well he went right up both ramps completely alone - the first time that I've ever seen him do this. Usually I have to walk behind him to keep him from turning or going backwards. Not today! At the top I turned him around to go back to the gym and so he did this same circuit 3 times total - it was amazing. The last time he needed a teeny tiny bit of help up the long ramp, much less even than the last time that I saw him go up on Friday. Evidently those walks around the neighborhood are working.

During his therapy session he did pretty well. He paid attention and did what was asked of him for the most part and when Amy was telling him which parts of Mr. Potato head that she wanted using sign only, he was fast and accurate!! At the last of it he was being Mr. Stubborn, I don't know where he gets it ;) He was fine getting back in the Jeep, once I told him we were going for lunch and that I knew where they had some ice cream.

He danced and squealed for me again, not pulling into Culver's like normal, but on the road where you can first see it, a couple traffic lights away from it, I was amazed. Just me and John for lunch is not the easiest thing in the world as he misses daddy, and so do I. But we managed pretty well and he even ate, well once he realized that I was serious about the ice cream and he wasn't getting any until he ate his french fries. Then he started porking them down. When the ice cream came he was so excited and was satisfied with me feeding him a bite, for every one of my bites for a while, but then he needed the spoon. Little silly then 'fed' himself ice cream to the very end!

The ride back to get Mark wasn't bad either. John will normally nap off and on, or fuss because he wants out. Not today! Today he rode home with a Culver's cup of ice in his lap that he fed himself all the way to town. He did great holding it right up until we pulled up beside our favorite Chinese place. I thought we could sneak by it, as we normally approach it from the front, but nope, we stopped and he was dancing, squealing and signing 'eat' in the back seat. He had taken his hearing aids out long ago, and nicely gave them to me instead of pitching them, so I signed to him that we were going to get daddy, and well that was okay, but he'd much rather go in and eat.

Needless to say, John was exhausted and ready for a nap when we got home. We got him up for church this evening though and he did pretty well. He play a bit in the pew, and really liked it that his sock feet were slippery and he could slide around on the floor, but well, at least he was quiet while he was doing it. The one time he really decided to chatter was when the Pastor said 'we'll speak the Psalm together' and John just started yap, yap, yap, yap, yap, I have no clue if he understood and was trying to participate or if it was just time to yap, at any rate he shut up when everyone else did.

After the service everyone came by to congratulate him on being so good, he was too tired to care though and gave a few of them 'five' but was mostly interested in coming home. He did great on the walk home, all the way up to the last corner before our house, that's where I had to go back to retrieve his sock!

Friday, March 9, 2007

Growing Up

This afternoon we got yet another sign, a postitive one, that John is growing up!

John has been fighting an intestinal virus all week, we've been giving him ceralyte (like pedialyte) through his g-tube like crazy trying to keep him hydrated but was worried that we were losing the battle, as we most normally do in these circumstances. This afternoon we were pretty sure that he was going straight down hill, he was great at the first of speech therapy but by the last of it you could just see that he didn't feel good, he was offered and refused french fries for lunch and then go very upset and cried but no tears. All warning signs that the time for IV fluids had come. Upon consulting his GI nurse practitioner we took him to the ER just to have them check him over and make sure that he was okay, of course we figured this meant that at least 2 of us were spending the night in Columbia.

Well in the ER John started to perk back up and by the time the actual doc came in he was sitting on the bed playing, looking awesome, better than he's looked in a couple days. They went ahead and drew labs anyway because with John you can never tell. All was fine! We have no idea exactly what has transpired in our little guys gut, kidney function, metabolism, or whatever, just that it seems he is growing ever stronger and more resiliant and for tonight is fighting off an intestinal virus in his very own bed!

Monday, March 5, 2007

All Done

Everyone has tried like crazy to get John to make the sign for 'all done'. It's relatively simple, well within his abilities to make and yet even though everyone, OT, Speech Therapist, Mark and I have tried it has taken months for him to get ahold of this sign, even though he normally can learn 2 to 4 signs in under an hour. Well today was the day that the 'all done' sign finally became a part of John's vocabulary. I was feeding him lunch after daddy had to leave and he wasn't happy, there was one last bite left and he got his stubborn little face on looked me right in the eye and made a clear and unmistakable 'all done' sign. Poor kid, while I congratulated him on finally getting the sign down pat, he still had to take the last bite!

Thursday, March 1, 2007

Blowing Feathers

I think the old saying goes something like "you could have knocked me over with a feather." Well around here the feathers are the ones getting knocked over, particularly a bright blue one that we brought home from speech therapy on Wednesday. It's a long story, let me start at the beginning...

...Monday, John went to see the Developmental Pediatrician. During this visit he was seen and evaluated by a speech therapist and an occupational therapist, not his normal ones, and they each had suggestions of more and different things to do to help John. The speech therapist told us that she felt that John's dyspraxia was not only affecting his mouth, but that to her, he seemed to also have a problem with phonation (speaking) because he didn't seem to be able to control his breathing. Not that he has a breathing problem, but can't make himself exhale or inhale on demand. This would go along with the other quirky things that John can't make happen yet, like he can't close his eyes if you ask him too and it took him days to learn to stick out his tongue when asked. Anyway, the therapist suggested that we get him to blow on things and made lots of suggestions including what is supposed to be the coolest bubble blower in the world, sold at Gymboree of all places, hmmmmmm, a reason to go and let John wander the mall!

...The rest of the appointment was quite productive, the OT had several suggestions as well, and the pediatrician herself checked John's legs because he seems to have one that's a bit longer than the other and might need a lift in one of his orthotics. She also suggested that John begin going to the Cerebral Palsy clinic and set up his first appointment. CP is one of those things that scares me, but John's PT assures us that he knows adults with CP who have graduated from college and married voluptuous blondes, while this doesn't necessarily ease all the worry I suppose it does some. At any rate, there is no formal or really even suggested diagnosis of CP, but that is the clinic where they would best be able to keep track of John's spine and hips to make sure that they don't rotate or move out of line. John has weak muscle tone, always has, and this is the clinic to watch it in, and I suppose that I'll leave my fear in the parking lot and do just fine.

...Oh the feather, well anyway, John and I went to speech alone on Wednesday. This was rather an interesting ride, the first ever that John has made that long with just me that he kept his hearing aids in and actually the first in a long time period that he kept them in. We talked all the way in, and he showed me the signs for the trees that we passed, and the bird (hawk, actually) that was sitting on the big post and the trucks that were on the highway, this was all rather entertaining and fortunately not distracting enough that I wrecked the Jeep. At speech John was pretty good, although he seems to have a problem picking a picture out of a book, while he has much less of a problem picking up a 3-D object in the same situation, we're working on this. Near the end of speech, Amy, suggested that we have John work on blowing a feather off our hands because that takes very little effort and would bring the quickest success for him. He tried to blow the bright blue feather off her hand and was able to move the little wispy hairs on it a bit, enough that we could see he was working on it, but that was as far as he got, so we took the feather home to practice.

...Yesterday he was able to blow on it a little more and this afternoon Mark was giving it a try and the very first time John blew it right off his hand and then was able to do it again each time after that. The other cool things for the day were that John was able to finish a whole juice box using the straw, as opposed to squeezing the box and squirting the apple juice in his mouth and other places, or pulling the straw out, throwing it on the floor and then tipping the box up and squirting the apple juice out of the hole. I'm not a big fan of juice boxes but the little straws really work on the mouth muscles and besides the Motts for Tots Apple Juice is at least diluted down and not straight sugar, besides he only gets one.

Also we worked on his pointing at pictures in books, this was good and well typical. We started with "The Best Mouse Cookie" and I had John point to the mouse on each page, he did pretty well, other than when he was distracted and looking at the dog. Then we went onto "Where's Spot?" and here he showed me that it may be a little more behavioral than we were thinking. At first he wouldn't point to the dog, hello there is a dog on every page in this book, and she's big! Anyway, then I refused to either read the page, or let him turn the page until he pointed to the dog, this resulted in the dog getting pointed to on every page with little or no difficulty and on the last couple pages he first 'poked' the dog and then looked for Spot. Silly boy. With "Barnyard Dance" he did pretty well with finding the cow all the way through the book, the second time through when we were looking for the pig he found it some of the time but was also showing me the sign for 'duck' and 'dog' and pointing to them too, and of course by the time we tried looking for the sheep it was a lost cause, but hey he was doing much better.

Each day we work on John's signs, verbs, nouns, with flash cards, with books, with questions and without. It happens at every meal, and most of the time in between. I've finally resolved myself that we are not going to homeschool in the future, we're already doing it now, and hey it's a lot easier and less painful that I thought it could be and well a good bit of the time it's really even fun and all of the time John is learning one more thing, so we must not be too horrible at it either. It's nice to have a day of successes, tomorrow we have more speech therapy and pool therapy and who knows what new things we'll learn.