A Long Awaited Update

The little charmer is asleep in his bed and has had a wonderful day. The past few weeks have been an ongoing adventure that has left little time for posting. Since John's GI and Nephrology appointments we have seen improvements across the board. All of his therapists have been impressed with his progress and are giving us more confidence in what John will be able to do. Mr. Paul the physical therapist sees John twice a week, once for PT in the pool and at the mall in Independence using the play area and for the interaction around other children. Each time John gets in the water he makes ever bigger steps. He was even trying to put his own face in the water this week. With the improvement in his movement we have decided to remove the seat from his gait trainer for when he is inside tha house, but we're not quite ready to take that step when he's outside or someplace else. That will come with time. Miss Desiree, the occupational therapist, has started John on letter recognition, color matching (different objects that have the same color), and continued play with markers and a magna-doodle. We see Miss Amy, his speech therapist, at the Moog School every week and she continues to challenge John in working hard to make his vocalization clearer. This is in some ways his hardest and most frustrating task, but it also does bring him joy and laughter. He so much wants to communicate his needs, and we are able, more often than not, to figure out what he needs. Today he showed us what he can do when it's important to him. His fine motor coordination combined with body movement made it possible for him to roll and scoot himself over a foot to reach his cup when he wanted a drink and then move himself, with the cup, back to his original lounging position. His ability to remember how things work and manipulate things, not just his parents and the other adults in his life, was demonstrated when he used the dvd remote to navigate through a couple menus and start his favorite movie a second time. We are looking forward to things being a little quieter this coming week after spending nearly two weeks in North Carolina with family and coming home to therapy appointments every day for the past three days. The pictures below are just a few from our vacation.



This is a picture of John with his Papa. He was getting a little fussy until we got him to start blowing kisses.


Daddy, Papa, and John John all together.


One of John's favorite games at Papa's house was to run down the grassy hill in front and have someone pull him back up to do it again. This time John's twin cousins enjoyed playing the game with him.


When it was Daddy's turn John got to have some extra fun because Daddy can run fast enough to make John smile real big.


Whenever John reached the bottom of the hill he would reach out to hold Daddy's hand while we walked on the street to the driveway to go back up to do it all again.

Three Cheers for Good News!!!!!

Cheer #1: John's GI appointment in St. Louis today went very well, great in fact! He is now 22 1/2 pounds, 33 inches tall (he was only 31 at GI but relaxed for the next appt so 33 is the figure) and is now NORMAL height/weight ratio. He's still a little bitty squirt, but a growing and doing fantastic little bitty squirt. He started to cry in the office because he couldn't get in his gait trainer until Miss Sandy was done, but once he was in his gait trainer he was a happy camper. He walked all over Children's, went to see friends on the floor and walked out to the jeep to leave. That's a pretty big trip for little short legs, probably equal to from one end to the other of a good sized mall. He is getting so much better at controlling the gait trainer, and is doing very well at getting between people, not running into stuff and finding his way without much and often time no guidance other than one of us walking with him. For labs he started to cry when I took him out of the gait trainer, but I told him that as soon as the lady was done taking his blood he could get back in, so stopped pouting and stuck his arm out and gave the lab lady a get-on-with-it look, he winced a bit when the needle went in but never cried or fussed and just patiently waited until she was done then 'jumped' off my lap and was ready to get back in the gait trainer. Ah the freedom of self-determination, it's a good thing, for this we cheer!

Cheer #2: By the time we got to John's nephrology appointment the lab results were in. John currently has NORMAL kidney function for someone his age and size, NORMAL! The doctor was thrilled with his progress and amazed at how well he is doing.

Cheer #3: Today's nephrology appointment was in part a regular check-up and was also time to discuss surgery for bladder re-sizing, and some other pretty major stuff, a big big surgery that everyone has pretty much been assuming would come at about his 3rd birthday. Well, are you ready to cheer, here's the news, because his kidney function is NORMAL, because he is doing so well, there is NO need for surgery in the forseeable future!!!!! We are celebrating!!!! He will still need to have periodic labs done and be followed by the nephrologist, but NO SURGERY as long as he continues to do well.

Of course since all these cheers meant that we spent the entire day in St. Louis we are all exhausted and in fact the little silly man is sound asleep in his bed. He has really decided that he is going to do things his way though so we've already had to go back in there and fasten his diaper closed ;-)



This picture was taken earlier this week. If you look close you will see a pair of pliers in John's hands, those were what he was helping daddy build the train with. He had a great time and just loves to get to help!

Pool Physical Therapy this past week was much better, much less screaming involved, actually none at all after the first minute and he seems like he's starting to like this. Mr. Paul, the physical therapist, told us that we would see his strength grow exponentially from the pool therapy and we are seeing just that. John's new favorite thing to do is take his gait trainer and ram it against the front door until you take him out for a walk. Mind you this means that he has traveled across carpet, which he was unable to do even a couple weeks ago. He is now able to go all the way around the block under his own power with just a little, less all the time really, help in staying in the road and out of the weeds and such.

Occupational Therapy with Miss Desiree was great too! He is now sorting colors flawlessly when he actually looks at them for her too. She played around with him talking to him and such to see what kind of directions he would follow and what he understood, she's fully convinced the time has come for letters and is returning next week to start pre-reading, as in learning those letters!!! She told us that we should understand that John's muscle planning issues will make it very hard for him to actually write in the traditional methods, at least early on, and that we needed to start investigating assistive technology to let him express himself 'verbally'. So we are starting to look into this, we have heard that there are keyboards and such made for little kids to help them with this. If you've ever read Dean Koontz's Watchers you know what we are talking about, only instead of a typing dog, we're looking at a typing toddler!

All news from here is good! I can't remember everything, but know that each and every day brings a stronger, more determined and even happier, if that's really possible, little boy.

Poomba, M&M's and Swimming Pools

It has been a wild and wonderful 10 days in toddlertown!!! John's love of tv has grown exponentially over the past week and a half, now he will point at the shut off tv and give us that same excited squeal as he once only gave for things like M&M's! We don't even have to be in the room with the tv anymore, he'll be all excited and pointing and we can ask him if he's wanting to watch his "Stinky OO Poomba" and yep, that was what he wanted. He has even been able to sit through the whole movie in a circle of his toys and play, watch TV, without pulling his hearing aids, and with minimal fussing, despite being in the room by himself. It's been very entertaining and we are now compiling the list of kid movies that he would like and that we can handle repeatedly and loading them up on his Netflix queue!!

We had no school this week as this is the one week summer break before we start with the regular school year on Monday! We're excited to get back and to see what new stuff John can surpise his teacher with. We've been playing with a little set of leggos and leggo buckets that is designed to teach kids colors and John is pretty regular with picking out Blue, Green, Yellow, White and Red one or two times through, but after that you can just go find something else to play with or play with these toys differently because after all he has already shown you that he knows those colors. He's learning to cut paper, hopefully only paper, it takes too hands but he can hold his little scissors and at least make them cut the paper. He's just been amazing. His OT came and played with him with finger paints and he loved it! We were both afraid that when he got the paint on his hands he would be unhappy, and there was a little hesitancy to start with but then he got into it. He really enjoyed her painting his hands to make hand prints and him getting to paint her hands to do the same. He loved the paint sponges and squeezing the paint out of the tubes and all! We've looked around for finger paints, they must really be hiding those things well, but we've found that some ketchup works just as well, and John really likes to 'dip' anyway so it's a natural.

John is becoming more aware of where we are going and wanting to go more often. A couple times this past week he's pointed to the garage and said 'go, go, go', of course one time was midnight and while I was all up for taking the diaper wearing shortness around the block his daddy decided the wiser move was just to put him back in bed. After a little playing, John was okay with that too! John has known for a while when we get to school, first off because his FM system in his hearing aids pics up the other kids, and then even without his hearing aids in from the surroundings, he now also recognizes when we are home, any place with a drive-through window, when we are someplace to go shopping and within a couple weeks I'm sure he'll recognize and be happy to see where we pull up for pool therapy!

John's first pool therapy session was yesterday. He is amazing! He was also mad, mad, mad, because you can't wear hearing aids in the swimming pool. He spent a good part of the session with his fingers shoved in his ears, hollering, and looking at us like we were seriously misbehaving. But by the end he was calming down and even starting to smile some. The amazing part, he has this cute little frog kick and he kicks, kicks, kicks, the whole time he's in the water and he was even able to kick himself across the pool, supported by a floaty thingy, from one side to the other to come and get me, although he was really probably more interested in getting to those hearing aids, but he was certainly a kicking boo! The PT was amazed too, and told us that as soon as he calms down and starts to enjoy the water he will be swimming!!! From John's performance in the water the PT predicts that he will swim before he walks, that he will be a total fish in the water, and that he will walk, walk sooner than anyone thought and walk without braces!!! We were so excited, the PT is so excited and even at the end John was so excited even if just to get out and get his hearing aids.

After pool physical therapy we took him to Arbys because we figured he would be hungry and we were right! A solid hour of kicking in the swimming pool and he was starving, we'll probably have to order him his own food sooner than we thought. He talked to us the rest of the afternoon, I think he was trying to tell us about the pool, but of course we don't really know, what we do know was he was excited and telling us about something!

Little silly man is awake and doing great this morning and of course the first thing that he wanted was his ears! Oh and I almost forgot, the M&M's in that title. We took John to the dentist this week, everything is great, all of his baby teeth are through or coming through and they are doing well. John laid nicely in the dentist lap and let him paint his teeth with fluoride varnish and didn't even bite the man. The dentist reminds us alot of Mark's brother Andrew, who is an orthodontist, and so we are curious to see when we go to North Carolina next month if he thinks Andy is Dr. Coyle, who he kinda likes. By only seeing the dentist once every six months he may not even think of it, but who knows. Anyway after the good report from the dentist the dental hygienist told us to beware of gummy anything and that if we feed him sweets let him have M&M's or other chocolates because they melt off the teeth. Being as M&M's and other chocolates are John's favorites that worked out great. The last trip through Walmart, John was all excited to be getting to the counter, because you know that is where the M&M's live. I tried to talk him into the bag of dark M&M's, because Mark and I like those much better, nothing doing, he kept pointing at the shelves, so I held up the bag of dark and the bag of plain and he grabbed the bag of plain out of my hand and hugged it! Mark's sure it's because there is more sugar in plain, and I think it's because he knows we won't eat as many of those because we like the others better, whatever the case plain it is!

The picture is from John's latest little modeling job for me, he's plays a pretty darn entertaining pirate!

Go to Sleep John!

John's day has been pretty much uneventful except that he now has the tendency to put the little balls in his toy in their corresponding color slots now. It was pretty cool to see!

Just had to share this picture though. It is of course well after John's bedtime and when I came through his room 10 minutes or so before the picture was taken he was rolling around throwing his toys hither and yon so I gave him a hand to sit up. When I came back what you see is what I found. A bright, awake little boy with his fingers in his ears asking for his hearing aids, alternately pointing to everything in his room as in "hey, give me that." So silliness is sitting on the floor playing with a few toys...hmmmmm....I wonder, when do toddlers go to bed in the real world?

Despite all appearances...

...John is doing great! I write this from the hospital in Columbia where John was admitted on Monday for dehydration. Actually this is his second admission this weekend because he was admitted for the very same reason on Friday. It looks like he just needed a little medicine change and is picking right up and doing great. He should be getting to go home sometime today. Right now he is wandering around the hospital room in his gait trainer attempting to get out of every door! There is a family on the floor with some issues currently, but as soon as that is resolved he will once again be wandering up and down the hall exploring all the paintings on the floor and walls and anything that anyone left within reach of his little hands.

Mr. Paul came to see John for Physical Therapy before we left for school on Wednesday of last week. John did well and Mr. Paul is more and more convinced that he will see John walk independantly and relatively soon. John is now wanting to take steps all the time and constantly wants to 'go, go, go' which also means that he is growing increasingly frustrated with the limitations of his body, but the good side of that is that it pushes him to try and do more things and he's finding that the more things he tries and really wants to do the more that he is able.

John didn't get to go to school this week because of his hospitalizations but school last week went great, even suprised his teacher! It's sometimes hard to decide whether we should tell his therapists what cool things he is doing at home because he won't always or even often repeat it for someone else, least of all for the person that you want to see the cool trick. Well I was so thrilled with how he's been working on colors that I couldn't help but let Miss Amy know. She was excited and even though John would not consistently pick out the colors by name he was sorting colors like a champion!!! We were all so excited and it opens so many more doors for therapy and teaching. Amy did tell us that the dsypraxia therapy is NOT fun and she just didn't think John was ready to cooperate with unfun things at the moment, believe us he is certainly not, but that the rate of talking would not necessarily slow down the rate that he could learn other things like colors, shapes, numbers and our favorite and most desired goal READING!!! Albeit those things are down the road a ways, John is just turning 3 this December, at least they are on the road that we are traveling.

Thursday of last week brought Desiree, the Occupational Therapist. Another thrill packed day! Miss Desiree brought the oh so loved finger paints. John not only knew exactly what she had, he remembered the exact step-by-step routine that they played last time, even though it's been two weeks full of other therapies, books, tv and such and absolutely no finger paints. We know that if he plays with something a lot he's done with it and won't then do it for his therapists so we don't repeat verbatim lots of stuff that he does in therapy. To say the least Miss Desiree was floored that he remembered every step of the process and she never had to remind him even once of this little finger paint dance that they had been doing. She is ready to start pushing his little brain to learn, learn, learn. Actually what she told us was that he was too smart to not push him hard to learn, too smart to let his learning be dependant upon his muscular activities and smart enough to know that if we weren't pushing him to learn that we didn't expect much and to manipulate that to it's fullest. So she has big plans for him using a relatively new therapy and starting to do things like more colors, learning his letters and such! We are very excited!!!

Friday pool physical therapy was called off due to storms and lightening but John needed some extra fluids anyway and ended up spending the night in the hospital. Even there we see advancement all the time. He doesn't scream and cry over the IV's anymore, he seems to understand that if he holds still it takes less time. He's also less tolerant of the nurses, docs and staff and mostly just wants them to go away so that he can watch the tv some more. He's learned to use all the buttons on the little hospital tv and can surf the channels and turn the tv on and off, and on and off, and on and off with the best of them. He's also now strong enough that he gets to ride from the ER up to his room sitting up alone on a gurney, looking around at everything, he thoroughly enjoys this little ride and entertains the staff as he goes along because despite age, and such he's still a little bitty guy and lets not forget overwhelmingly cute!

Saturday John was doing great and we got to go home. Sunday morning he looked fantastic and by Sunday evening he was starting to go downhill again and on Monday right back to the hospital. But they think that they have figured out this time and so going home should be of much longer duration. This week will hopefully be a week of resting up and doing well during therpies and next week he gets to try going to the after-school program in the country to hang out for a couple hours on Thursday afternoons. His therapists would like to see him have some other children to just play with so we're going to give it a try and see how he does!

Well the hall door is back open and the toddler is escaping!!!



Phew! We made it home, John is doing great! Thought I would share his last modeling pic with you and let you know that we were all back safe and sound at home and silly boy is snoozing in his own bed! He has PT in the morning, another modeling job for his mommy and a pretty full day, but I think he will be up to it because the rest of the afternoon went fantastically!

Play time is more fun!

Thought I'd share the latest little modeling picture of John. He was having a good time playing with his pants and then later trying to read his book instead of getting pictures taken, he is becoming more determinedly his own little person every day and we are so very glad to see it.

School went very well today. John really enjoys getting to play in his gait trainer at school. One of the games that his teacher played with him was lining stacking buckets up around the edge of the table and having him go around and pick them off the table and stack them inside each other. The trick was that John is short enough that to get the little buckets off a standard buffet table he had to reach underneath of them. The first couple he batted at and had a problem with but by about the 4th or 5th bucket he had the routine down pat and would very carefully reach up inside the bucket with his little thumb and pull it off the table. John always enjoys school and always does something amazing every time we go, today was no exception! After playing with the buckets and such and then coming back into the classroom and getting out of his gait trainer he was sitting on the floor playing with the little barn and animals. When Amy told him to put the chicken that says "cheep, cheep, cheep" in the barn he started to rub it on his head, it took a minute of giggling on my part to figure out what was going on, he was hearing "beep, beep, beep" and that is the sound that we make when we play with the little cars and pat them up his arm "beep, beep, beep," and then run them across his head "vroom, vroom". Silly boy! Amy did tell us that if anyone ever questioned his cognitive ability again that we should tell them about this incident as proof that the little stinker is smart even if he doesn't talk to us yet!

This evening after his nap he was playing in the floor with his toys while I was trying to get some work done so I put in a movie for us both to enjoy. When he heard the Disney theme start up he was all excited and paid pretty good attention to the first 20 or 30 minutes of Lion King 1 1/2. Enough so that he would laugh when the animals laughed. Later after he had lost interest in the movie and then in his toys and I brought him up to sit on the couch with me he started to watch the movie again. When his dad came and sat with him and the ending credit music was playing he kept putting his arms up in the air and wiggling around, it took us a minute to figure it out but he was dancing! It was hilarious and he knew it, he would dance a bit and then make sure that we were watching, clap for himself and then dance a bit more. He was a silly little delight all the way up to bed time.

Phew! What a week!

We started out with a trip to the ER on Saturday. Poor little pumpkin's electrolytes were out of balance and he needed a little help getting them back in order. He is such a trooper when it comes to this stuff. 24 hours of fluids and he was spry, happy and ready to go home. It's been a little over 3 months since his last hospitalization and there were some definite changes this time. For one thing they were able to get a size 22 IV in his hand on the first try, that's a really big IV and John used to be a nightmare to get an IV into, but even dehydrated this time it went right in on the first stick and with very little fussing from the patient! He also amused himself by pointing to everything, including when the doctors came in to visit and he had decided he had enough he kept pointing them to the door, as in "Leave!". He did great though and just amazes everyone with how much he is growing and changing. He enjoyed playing on the 'big boy' bed and even decided that he should be able to get everything in the room and dove off the bed on his own, fortunately other than a few bruises there was no damage done, well other than scaring his mom! This hospital stay is the first time that John's ever sat and watched cartoons, he liked them a little, but the new wore off after a half hour or so and then he didn't have much interest in them any more. He also decided that hospital food was the pits! He took a few bites because he was very hungry but even reached in his mouth and pulled the last bite out because it was just too yucky! Poor kid, daddy came and saved him with some french fries.

We got home on Sunday night just in time to find out that the air conditioner unit for the house had died! With record temps and no AC the next couple days were a hazy blur! School went well and John even amazed his teacher when he bumped his head on the table, while he was wandering around in his gait trainer, and then used his hand to protect himself whenever he got near to the table after that. Smart little stinker! He also managed to say something that came very close to 'run, run, run' in the appropriate place for him to say that.

The rest of the week was pretty uneventful. Not that John isn't amazing every darn day, but there were at least no hospital/dead ac kinda excitements. We did find John a new weighted open cup that he is having more success in using and a toddler fork that he was really enjoying getting his own spaghetti bites with today at lunch. It's nice to see him exert his independence where he can. He is also now playing more with his toys on the floor, and is scooting around while he's sitting up so that he can play with all different stuff, without falling over and without needing help.

The talking is coming along very slowly, but it's coming. Last week when his occupational therapist was here and playing with stickers with him he even managed a few 'ick-er's which was just great to hear! 'No' is now very clear and yet still sweet sounding, don't know how long that will last, but we figured we might as well enjoy it while it did.