Well VBS is over...

...and John managed to make it to 3 days, or rather nights. That's not too bad for his first time. Dad went to the closing without us tonight because John was napping. He had big fun in the swimming pool this afternoon, and feasted on his Happy Meal on the way home and then was ready for nappage, hooray!

While the house was quiet and I should have been doing other things I decided that I'd play with the new photo-printer and print out the vacation pictures that are here on the blog and made John a little book about his vacation. He was thrilled. I put in the words and signs for "My Vacation" and about flying, having fun, and seeing his family and he was already working on the new signs and loved the pictures, especially the picture of Uncle Cute Nose blowing bubbles for him. I find it interesting that he is even more fascinated than usual with words when they have the pictures of the signs with them, I so wish that he could talk to me more because I'm sure he understands that they mean something and are important to him. One of these days he'll be talking more and I can't wait!

All John's therapists are now on board for 1x a week therapy, what do you know John behaves better and learns faster that way, sure makes us feel good about the decisions that we've made. Speech this week went very well, Miss Amy had new stuff for John to do and he was thrilled to play with her. PT with Miss Gertie went very well too, and she says that botox for his neck is immediately necessary because he's not currently using the full range of motion on his neck. Today Mr. Paul told us that he agreed with that and think that more tummy time is what is needed. Tummy time would be the big downfall that we have as parents, John hates it and well we aren't the best about making him do it. They have some strategies for us to try so we are going to give it another big effort, sigh, we'll see how it goes.

Just a Swimming!

Today was John's first day back in swim therapy and he did great! Another therapist glad to see him continue advancing even without being in therapy for a month, that's just music to our ears. John had a great time in the pool, even though he was already exhausted when he got to it, a 7:15pm therapy time is a wee late for a shortness. But he was still all smiles and giggles.

We got his new braces today, and let him run all over Lowe's while we window shopped all the cool things we'd love to put in a house some day. Enjoying the time at my sister's out in the country has left us dreaming of someday getting to do the same thing, someday.

Yesterday was awful, we even spent yesterday evening discussing how soon we were going to be taking John to the hospital, little silly man pulled through the evening on his own, and had a great day today. Tomorrow he gets to run around the church while we have the church cleaning, I'm not sure this is going to be exactly helpful, but it will certainly be entertainment :)

Back to School

With the end of vacation the return of therapy was bound to come and today was the day. John did amazingly well, actually considering that he didn't feel good, threw up on the way there, and spent a good bit of it yawning he did GREAT! He remembered everything in speech therapy and didn't go backwards one bit. That's what we were hoping to see, we've spent no real time drilling his work while we were gone and now that we see he hasn't gone backwards feel even more confident in our choice to make therapy 1x a week, and spend the rest of the time getting to read books, go for walks, play and get to be a little boy. Oh we'll sneak some work in there now and again, we really want to up the amount of sign that Mark and I know and John loves to color and play with his flash cards and stuff but all in all we're looking at a much more relaxed fall, phew!

Time to Slow Down!

This past week has been one of interesting and in the end good developments.

Therapy on Monday was good, and John did so well, we're so excited to see all the progress that he makes. Wednesday, well that was another story. I took him to therapy by myself and he seemed excited and ready to go, he was good on the car trip there and even getting into the building he seemed ready to go. But well, all good things must come to an end, and this one surely did, and quickly too!

John ran right into the school and actually stopped and acknowledged a few people with a little wave, but when he got to Amy, his therapist, well he wouldn't look at her and instead of coming to her he wanted to run off into the supply closet to play. Now I'll spare you all the details, but suffice it to say that he spent his entire hour of therapy showing himself to be a very smart, very stubborn and very burnt out little boy. Instead of playing nicely at the table he tried to climb out of his chair to get in the toy box. Instead of telling us what the little girl in the pictures was doing he was only interested in the doggie. Instead of doing anything that he was supposed to do he did the opposite and then grinned and gave us the thumbs up sign. Amy was frustrated, mommy was frustrated and John well he had already taken out his frustrations on mommy and Amy and still had some more to go.

All the way home I thought and thought about what was going on with this child. I've joined an email list for LCMS Lutheran homeschool mommies and when I came home I asked them if they or their child had ever just hit the wall on therapy. Several mommies there have special needs kids and they were very helpful, very supportive and well all of them really helped us think through some stuff and make some decisions. First off it finally gave Mark and I the impetus to really sit down and discuss John's schedule and therapy and what we wanted to see and expected, and low and behold we were both thinking similar thoughts, like 'why are we driving an hour to therapy so that someone else can play with our kid when we could do this at home', we just thought we were the crazy one.

Well through much discussion, prayer and supportive input from friends we made some decisions regarding John and the various therapies and such that he has the opportunity to be in. Our determination has always been that he was a little boy first, and a special needs kid only when that interferred with little boy, and somehow we just got ourselves and our little boy lost in the therapy jungle. It's hard when people tell you things like 'I know a couple who took their child to therapy all the time and that kid is doing great' to then say "STOP" this is all too much and we have to slow down. It's hard to buck the authorities on anything, but we've finally decided that just as important as listening to our own selves when it comes to his health care it is important that we listen for therapy as well.

Mark called the Moog school and let them know that we were taking Friday off and starting vacation early. We're headed to Montana on Tuesday. He also let them know that we are only going to be bringing John in one time a week for the remainder of July and August and hasn't told them yet but when we get to setting the fall schedule he's only going one day then too. We have seen for quite some time that John makes great progress on the days that he comes back to school after several days out, and well it's just time that we take our homeschool ideals and apply them to therapy as well.

So we are off on a new adventure in our house. So far it's been fantastic. We've had time to relax, play Uno - which John loves and is getting better at, and draw and read and go for walks and all those things that our little boy loves and that he learns from too! Mark and I have started really working on learning more sign too, and hoping that as summer progresses we can get to the point that we can sign most of what we speak, that way John can pick up language expression naturally by watching us and repeating. Even tonight he was copying the way that Mark would hold his hands and fold his arms, it was funny.

Tuesday we are off to visit my family in Montana, where John will get to meet his aunt, uncle and cousins and see grandma too, get to ride a horse, pet some chickens and ride on a four wheeler and who knows what else. We'll update and post lots of pics when we get back!

Little Kicker

Today was not our typical Friday. Usually we all leave out of here at about 10:30a for speech therapy in Columbia, then lunch, then off to Sedalia for pool therapy and all get back home after 7p or so if there are errands to run. Today therapy times were different so our whole day was different too, and so was John!

Little boy went with daddy to speech this morning an hour earlier than normal and did really well. By the time he got back home he was ready for lunch and a nap. He woke up in time to get ready to go to pool therapy late this evening and was so excited that he hugged his swim diaper several times before he would let it go. He jabbered all the way to Sedalia and when we got there he was eager to get in now.

Usually Mr. Paul has to do a lot of encouraging and such to get John to put out a few measly little kicks here and there, as John loves to float and really looks like he's on vacation as soon as he's let go. Well today he had a bigger audience and therefore, true to John's personality, he performed much better. When he realized that perfect strangers would cheer for him if he kicked he went crazy and kicked and kicked and kicked. He kicked while floating on his back, and on his stomach and even kicked hard enough on several occasions that his toes peeked out of the water. The more they cheered the more he kicked, it was fantastic to see, and well worth all that cheering.

New Haircuts!

John and I both got new haircuts this past week so we thought we would share. John is doing GREAT, he is getting stronger and faster every day, believe me the dogs are scared. His new trick this last week was feeding himself with one hand. John has fed himself cocoa puffs and cheerios and a variety of other things for a good long time, but he mostly has put them to his mouth with his left hand and then used his right to help get them in. Well the other day at his IEP meeting we were talking about he just didn't seem able to eat one handed, he was obviously listening and decided that we should know what he was capable of as that night at dinner he started feeding himself one handed like he had been doing it forever. He amazes me at how determined he is to prove that he is a big boy despite his tiny stature.

John's IEP, individual education plan, went great, beyond great it was perfect. This is the plan written between the parents and the school district regarding special needs kids and what they will be provided with. It can be a rather intimidating process and we have heard horror stories about school districts that are just bears to deal with. Not ours, our school district not only set out to make sure that John is getting all of the therapy that he needs but went further and wrote in his plan that his overall diagnosis that most affects his education is systemic ataxia, unsteady muscle movements. They did this to make sure that everyone who sees this kid knows that he's very smart and will push him to excel and overcome what limits his body has. We were thrilled! So often people see John and just see the cute and the disabilities and the people that did John's IEP saw the abilities and the potential and the amazing little boy that we know, and the cute too of course, but we are most thankful that they saw that our little guy is a big smart boy in his head, even if his body holds him back some.

So we've met John's new physical therapist, his new occupational therapist is even taking a continuing ed class on eye/hand coordination, an issue that John has particular problems with, he will continue to see the same speech therapist and still have pool physical therapy with Mr. Paul. He will also start going to the preschool at the MOOG school this next year, he will get to spend an hour each day we are there in the classroom during their music and social time. That will be cool as John only gets to see other kids when we visit family, occasionally go to the country church or passing by us in hospital or mall.

Before I go I have to tell you another of John's latest coolest new skills. Mr. Paul has been trying to teach John 'daka' for a while, hold your hand up in a classic Fonzi pose and say 'daka' and you got it. Well John not only can hold his hand that way now, but has even said 'daka' a few times. I knew the kid would speak Chinese first, I just knew it.

A Long, and Long Awaited Update

Phew, sorry it took so long to get back to this. Finally a phone call from my cousin reminded me that there was something that I had been forgetting to do, thanks Susie!

Let's start with a picture...



This is John opening his Easter present from one of the kids that is on one of the Ebay boards that I'm on. The kids, mommies, did a swap so we sent presents to a little boy on the east coast and got this cool box in exchange. John loved it. Even today he had the carrot madly waving it at the dogs babbling something, I'm sure it was some kind of incantation to make them stand still until he could run them down.

This update has taken so long, not because John has been sick or in the hospital, quite the opposite, John has now made all of February, March and April with no hospitalizations, this is a record for him. Actually right now is the longest he has been out of the hospital for the entirety of his life and you can tell just by looking at him that he's feeling great and doing awesome.

Holy week normally finds us in the Hospital, this year we not only were home for Holy Week but in church for most of it. Papa came to see us the next week and oh what a time we had. It's always great to get to visit with Mark's dad this time John especially loved it and even stood by the door and cried when Papa had to go home. Every so often he still tells us that he's calling Papa on the phone and is always glad to hear his voice when he's really on the other end. Sure is cool to see him start to remember those who love him so dearly.

Amy, John's speech therapist tested John earlier last month to see where he was with his receptive and expressive communication skills. Remember John has only been hearing for a little over a year and prior to that as far as anyone could tell John never heard speech before. We were delighted, albeit not really suprised, that John is very close to age level for receptive language, meaning the little silly can really understand everything we say. Expressive communication is much harder for him, he is way, way behind, like at 12 months until you start looking at sign language and then he is catching up. Amy expects that John's receptive language skills will go off the chart and that his expressive using sign will match it soon, but that the verbal communication is going to take a good long time to get there. She thinks that we should never say never, we agree, but that most likely if John is going to be a verbal communicator that it will happen by the time he is 6 or 7. Of course the time after we had this conversation he showed that he was listening to us very well and showed us that he could immitate lip movements and sounds better than he had ever done before. He still struggles with this but somehow he seems to be trying harder lately and that is a vast improvement.

Time for more pictures...



John loves modeling for the little sets that I make and this time even daddy got in on the act at the very end. John is always excited to see a new shirt on the mannequin and tries to rip his off so that he can go and do pictures. Of course pictures used to be easier before he got to be more mobile, now he can do things like try to run his little push bike into the footlights, but even that is just too funny to pass up.

The last set that I did is the very first time that John was able to stand long enough for pictures without Mark supporting him.



He was so proud of himself and actually turned himself around in the gait trainer a couple times before we were done. He has gotten so much stronger. He even has asked, on a couple of occasions, to have the seat removed from the trainer so that he could walk without it. The last time was when we took him for a walk last week and he actually walked a good half block or so with no seat for support. He was very proud of himself and so are we.

Of course with more mobility comes more bruises, but they are nice normal 3 year old bruises so we are happy with those too.



This pic was pre-bruise, but if you check out the knee on the off side of the bike you'll see that it is near the ground. Once he got it there he decided that he was a big enough boy to turn himself around on the bike without help. Earlier he slid off the bike onto the floor without help and did great so we watched to see what he could do. Plop, right off the bike, fast first into the concrete. A big ouchy bruise on the forehead and a nice bloody nose to go with it. Poor kid. It did prove that his clotting factors are much better though because that bloody nose stopped on it's own before we could even get him upstairs and do more than wipe it off. The nose isn't broken and the bruise is fading, but he's still excited and ready to get on that bike.

We took John to St. Louis for checkups Friday and he did great. He is now officially 34 inches long, his head is growing and poor thing he's gaining no weight whatsoever so we're taking him to the pediatrician again in a week or so for another weight just to keep an eye on him. John changed from baby formula to junior formula a couple months ago and a couple weeks ago had finally progressed to where he was getting 1000 calories a night from the formula. Of couse that meant he totally quit eating, oh he might eat a bite of chocolate or ice cream here or there but other than that forget about it. We talked to his GI nurse and we all decided that he needed to eat, so cut his calories in half and viola guess who's hungry. John is now eating like crazy, he loves pork and is so wild about it that the other night he kept reaching over and stabbing the pork steak with his fork while we were trying to cut it up. He has also developed quite a taste for fruit and loves beans. Tonight he even managed to eat a few noodles, he doesn't normally like noodles, and ate his grilled chicken after we told him that it was pork chicken, he smiled signed pork chicken and proceeded to eat what before would not be touched because it wasn't pork. You would think that the kid watches a bunch of Emeril but really he doesn't.

One last picture for the night...



So even though the update has taken a long time to get here, the boy is doing great, he's signing to us all the time, chasing the dogs, reaching out for stuff and even falling off his bike, but all in all he's just amazing us every day!

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!

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.

Nearly Naked

John's day on Friday was pretty darn good. He did well at speech therapy, even paid attention for the first 3/4 of the hour, silly boy, the last 15 minutes he was so totally on his own agenda. He was able to do well with the new verbs that he is learning though and also got into his gait trainer unassisted again, this is always impressive to see.

Swimming pool time was hilarious. John figured out how to squeeze the little water toy and squirt water at himself and Mr. Paul, he also figured out how to hold the toy in the water and fill it back up - smart cookie this one. John has now decided that he wants to be on his own, floating on his back, and also that he likes to go under so about half way through his session we took off his little padded swimsuit/floatie device. He wasn't so sure about getting back it the water in just his swim diaper, and was definitely out of his comfort zone for a little while, but once he was strapped in a little floaty thingy he was happy to be on his own again and was even good with going under at the very end. So no more suit/floaty for John and he gets to graduate to little swim trunks.

Today has been okay, we increased his formula concentration last night again, this puts him at 80% of the new formula, and so he's had kind of a not so great day but he's doing well enough that he's sleeping in his own bed and not riding to the hospital. He did play with his books this evening and made one heck of a mess in the living room, we didn't know he could reach so many things. He also figured out how to pull things off the end table and as you can well imagine the dogs were sure to stay clear of those little hands!