Headlight!

John is making one of those transistions from nap to no-nap, to wait maybe I would take a little nap and we thought it would be nice if he could lay in bed and read a book and be in control of the lights himself. So we got him a tap light thinking that he could turn it on and off. Well daddy got the light out to show John before he went to bed and discovered that John's hands and arms aren't strong enough to turn on the light, at least not one-handed. John, ever the problem solver, gave it some thought while daddy was busy visiting on the phone, and figured out that if he laid his head on the light he could turn it on and off as he liked. As you can tell, John was thrilled with this discovery!

Merry Christmas!

We hope everyone had a wonderful Christmas! Here it was a great celebration, not just the normal Christmas stuff we always do, decorations and presents and such, but well it really turned into a celebration of life. First of course, is the celebration of Christ's birth that gives us new life and strength, and hope, and peace so that we can make it to each new day. Then there was also the celebration of my dad's life, this is his 17th Christmas in heaven with Christ, and we enjoyed a 5-pounds-of-carmel Christmas remembering all the fun stuff that dad did at Christmas time. The celebration of Mark's mom's life, this is her 2nd Christmas to celebrate face to face with Christ and we enjoyed lots of fond memories of Christmas's with Nancy. It was also the 1st Christmas that Mark's best-friend Troy spent with Christ, and through the tears there were lots of great remembrances of all Mark and Troy's good times as kids. This is also the very first year that John was home for all of the Christmas celebrations at the two churches. He had a great time at the Christmas dinner the week before Christmas and loved the children's program Christmas eve and by the time we got to the 9:30p Christ Mass he was in full tired-silly go, go, go mode, it was an event to be remembered! We're also very thankful that this was the year that my mom came to stay with us for Christmas! John has had a great time telling Grandma this and that and his favorite was to sign "Christmas Tree" and take her to see every one of them that he could find. It was great to get to visit with Grandma and share Christmas and John's birthday with her, it was also so nice to have her here to talk to when we were in the midst of scary things going on with John.

The week of Thanksgiving John had two episodes of non-responsiveness and spent 48 hours in the hospital for each episode and no answer to what it was. During the Moog School Christmas party it happened again and this time answers were to be found, but they were scary. His EEG was normal but on his MRI they found that he had lesions on his brain. At this point there are tons of test results out, but everyone from John's Pediatrician to his therapists, etc., believe that it was a viral infection that although it did damage, it will heal completely. There is an outside chance that it is a progressive debilitating metabolic disorder, and we won't have the all clear on that until more test results are back. But we've been told that each day that John continues to learn and grow is another day we can have peace of mind knowing that it is most likely just a viral episode that is over and healing. So far each day has been full of new things and we are thankful for each one of them!!

Happy 3rd Birthday!!!

It's been forever since we've updated, sorry about that, but life has been busy, some hospital busy, but mostly just good busy!



Celebrating the big #3! He's starting to get really enthusiatic about something is in that paper.





St. Nicholas day! As you can see the boy is getting this paper wrapped good stuff thing down.





Here's some of the other good stuff that has been going on. This is John's physical therapist, Mr. Paul, and as you can see John thoroughly enjoys his time with Mr. Paul, ssshhhh, don't tell John that he's really working hard too!

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.

The Puzzle King

Our little boy did something new this evening. John and his mom were playing with his wooden puzzles. The kind that have a picture on the piece that you pull out with the same picture in the space where the piece belongs. Well the little fella finally got the hang of it. Up till now whenever he pulled out the puzzle piece it would usually get dropped or tossed. This evening he looked purposely at the picture on the piece and matched it to its twin in the space and put the piece in its place. Hip Hip Hooray!!!

Night Shift Pic! Finally!

We promised one of the nurses at St. Louis Children's that we would post a picture of John in his gait trainer. When we go in for checkups we get to see the day shift staff but never get to see the night shift, whom we love equally as much, and wanted them to see John being a big boy too! We're hoping we get to see the night shift staff when we go for appointments in September but for now we thought we just share this cause he looks like such a big boy in his gait trainer and we finally have a good picture!



And he looks this good despite fighting the little virus that I've been living through. Oh and while I'm here he's learning to give kisses!!! We are so excited. He also has shown us that he knows that difference between pointing and counting and pointing and listing. Thanks to the wonderful Sandra Boynton book Horns to Toes he likes to count and then 'tickle, tickle, tickle' so we've been checking him out to see if he could tell the difference between pointing and counting and pointing and naming and yep, there are no 'tickle, tickle, tickle's' after naming but they are always there after the counting. What a smart little cookie!

New Things!

John has been doing some new things lately, well truthfully he does a few new things every day but there are a few notable ones that are way cool, even if they aren't always overly appreciated. John is now using NO consistently and appropriately! While this is not always a parents favorite thing to hear it is much nicer than John just flinging the offending object on the floor and looking at us like we have no clue. As you can see in the pic he has become even more in love with his books than ever before and he has always been a book-loving boy! His favorites lately are Brown Bear Brown Bear What Do You See and Paddington. He is starting to point to the pictures and tells me things about the books that I don't quite understand yet. His other new trick is to put the blocks in his sorter box, of course he has yet to show this new trick to anyone else, so we're just waiting, eventually he'll do it for one of his therapists and we'll all be cheering!

Today he got to do something new too! Amy, John's speech therapist, asked that we bring John to school in his gait trainer. He loved it! Of course he loves being in the gait trainer at every opportunity anyway but this was something really great. He enjoyed getting to play in it and was even a good boy and didn't lay screaming on the floor when he had to come out of it. That is not always the case.

Shawna, John's previous physical therapist, came by to visit and John was really glad to see her and so were we. It was nice to get to visit for a bit and we look forward to the next time that she can come through our way. John is going to have a couple weeks off of physical therapy while his new therapist, Mr. Paul, is visiting his homeland of China. We are of course keeping him in our prayers that his travels are safe and fun and look forward to him returning home. Once he gets back John will start on his new adventure of pool physical therapy, we can't wait!

John's move towards bolus feeding is going very slowly but it is going and that is a big positive step. He is also doing interesting things like coming home from church in a dry diaper and then filling it just after we get home. He's done that enough times in a row now that we've decided we're going to go and get him a little potty and let him just try and see if he is ready to move that direction. Of course I'm sure he'll love to sit on it especially if he has a book handy!

A Long Hot Week in Toddlertown

With temperatures this week reaching 100+ we had a whole lot of things going on. We were able to spend Monday in the cool inside with everybody having a very good day and getting ready for the trip to St. Louis on Tuesday for a GI appointment and to see the Neurologist.

Tuesday got started a little later than expected with a little boy that would just rather stay in bed. We got him up anyway and out the door to see the doctors. On the way to St. Louis John did a great job eating; almost a whole egg from McD's and about half a glazed donut from Krispy Kreme. We took John's gait trainer with us to Children's, and he had a grand time going down the halls to the clinics. The GI Team was thrilled to see him doing so well, almost 3 months without any emergency room visits or hospitalizations. He weighed in at just half and ounce under 22 lbs., they measured him at 31" and he finally hit the growth chart, albeit the very bottom, with his head circumference. Sandy was very impressed with what he has been willing and able to eat and with his ability to be mobile in the gait trainer. Dr. Rothbaum was glad to see us, said that he missed us, but was happy that we hadn't needed to be seen by him.

We got to see some of our favorite people while we were there, members of the staff; doctors, nurses, PCA's, and cleaning ladies who have been such friends and great encouragement when times were not so good as now. They were all impressed to see John scooting around in his wheels. Of course he was thrilled with all the attention and had a great time hamming it up for them. We were very glad we had thought to attach a line to the frame of the trainer, otherwise we would have had a merry chase.

We went to see the neurologist and it was a different one than the one we had seen before, and was only familiar with John's medical conditions, hospitalizations, and not much else. We had brought a letter on the progress John has made written by his speech therapist Amy. The doctor appreciated seeing it but could not clinically determine if what she had written about the possibility of vocal developmental dyspraxia was in fact the key issue with John. In fact he could not make any clinical determination, so he laid out the entire range of possibilities to explain his inability to consistently speak true words and included such things as a carbohydrate deficiency to dyspraxia to cognitive impairment. The doctor was also glad that we had the foresight to wait for this appointment to get the lab work done on John. He had some tests that he wanted run as well that should help figure out if there is a genetic issue or an indicator of this carbohydrate deficiency. The doctor tried to encourage us to do all that we could to help John grow and develop, but that we needed to remember to take care of ourselves too so that we don't burn out.

We went to the lab to get the blood drawn from John and had our first and only meltdown of the day. John threw a fit because he had to get taken out of the gait trainer for them to take the blood. He was not upset about the needles, he had to be stuck twice because he was wiggling and fussing so much, he just didn't want to be out of the gait trainer at all. When the lab tests were all done we let him back in his gait trainer and he walked all the way back through the halls to the garage and out to the Jeep.

After we were done there we were able to get in touch with John's Uncle Paul who was also in St. Louis for some big beurocratic meetings. We were able to see him for a few minutes, John hadn't gotten to see him since October. Uncle Paul was very happy to see John and gave him a hug in his car seat. We then went home, but had to go in to the local lab to get more blood drawn because of a strange result from the earlier blood tests. All in all we were gone from home for over 13 hours and drove over 250 miles; everyone was exhausted.

Wednesday should have been a day to rest up for John, but he was awake early and rearing to go. John got to model a new outfit made by his mommy, a set of pajamas, only they can't call them pajamas on e-bay, they call them lounge sets. John loved the new clothes and of course hammed it up for the camera. He got to wear these winter pj's in the middle of summer two times for us to get the pictures and had a grrr...eat time. John went to bed a little late on Wednesday night, but had a good night.

Thursday was another busy day and this time we all felt the heat. By the time we got to school for John it was already over 90. He was still tired and a little grumpy from the long trip Tuesday and the late night on Wednesday. He did all right for Amy, but not his usual best. After hearing what the neurologist said Amy was, like us, not agreeing with him regarding the possibility of cognitive impairment. This was encouraging because even though all parents are supposed to be positively prejudiced about their own kids potential and possibilities; we often wonder if we are seeing things as they are or more as we want them to be. While such a thing couldn't yet be completely ruled out, there were more likely reasons to explain his situation. Next week Amy wants us to bring John's gait trainer in with him so that she can work with him in that.

Next we went in search of lunch. Only to find that the place we wanted to go hasn't been completely built yet. After choosing something else we tried unsuccessfully to find some shade to park under to eat. It had reached 103 by the time we went in to see Lynne the orthotist that had fit John in his braces. Lynne was impressed with how well John was moving around and how strong he was to get the full range of motion in his feet that the braces allow. She told us she was looking forward to seeing John in three months to see how well his braces fit and to see how strong he had become.

We also went to see John's pediatrician; Dr. Beal. When Dr. Beal was examining John he was also very happy with his progress, his attitude in wanting independence and control, as well as all the things John could now do since Dr. Beal had seen him in March. One thing that Dr. Beal said that was very good news and encouragement was, "Oh my, the lights are on and he is definitely home." Dr. Beal was very helpful also in getting the right prescription for the pool therapy that John is going to be beginning sometime in August. We had a long hot ride home as the air conditioning in the jeep could only make the temperature bearable.

Today has been much better, a cool front brought some much appreciated rain and lower temperatures, and John, and everybody else, got some much needed rest to recover from the traveling and the heat.

Gimme a knife!

We were laughing at John through supper tonight, he would eat, and actually ate quite well, but only if he got to hold the table knife. Little silly guy would refuse a bite and I would take the knife away and he'd look at the knife, look at me and open up his mouth for the bite. Hmmmmm...kinda reminds me of his dad!

Other than supper John's day was relatively uneventful. He did great playing in his gait trainer, and despite throwing up some this after noon got up from his nap and played well. He even got the blocks in his sorter toy in the right spaces without prompting, of course I'm sure he won't do this in therapy any time soon, but it was fun anyway.

Home and Happy!!!

John had a great time visiting with the godcousins for the 4th. Despite the shared cold he really enjoyed getting to play with the kids. Our house is rather tame compared to the hustle and bustle of our dear friends house with their 5 wonderful blessings. The picture is of John playing with Rachel, Princess Pinky, our goddaughter, she liked to come by and play with John now and again, enough to keep him smiling. John enjoyed playing with the boys too, especially Nathan, their 4 yo, and he always loves those hugs and kisses from his godparents. This was the easiest trip that John has ever made and it leaves us looking forward to making a few more trips in the future.

We were all excited to get home, of course, and are still kinda taking it easy and getting over the cold and back into the swing of normal life. Today was John's first day back at school and he loved it as always. He was more talkative and quicker to respond to his teacher and really wanted to play, play, play. His little sense of humor is getting both quicker and more wicked ;-) Mr. Paul, John's PT came today too and John had a great time with him, even though he did scream at him now and again. Mr. Paul is expecting John to walk without braces in the future and he even thinks that he will be walking on his own, without the help of the gait trainer, within a year. We are so excited we can hardly sit still!!! John had a good time playing ball with Mr. Paul today and even got into kicking it a bit.

This evening while Mark was out at VBS in the country John spent the evening in his gait trainer enjoying the chaos that I've created with rearranging the sewing room. He has now drug fabric and stuff all over the kitchen and dining room and even came in the sewing room and started reeking havoc in here too. Silly little guy was having a great time though. He stands up in his gait trainer much more now, and is wanting to go, go, go, and he'll tell you that too!!!!

All things are well here and we are hope they are with you too!!!!

Change is Inevitable...

...and often good. Around here lately it's been interesting. John is at times eating full adult portions and at other times not eating at all, pretty typical toddler stuff! He achieved escape from the lineoleum and was able to get his gait trainer up onto the carpet and all over the living room on his own. Of course now that it's been readjusted so that he stays properly orientated in it he can't do that, but each day he can do more and it won't be long and he will surely be able to achieve ramming speed on carpet too! He's been delightful and happy as always and wanting more and more independance as each day goes by. Lately he's been attempting to put on his own socks, wants to put his shoes on, is even more demanding of when he wants his ears in and has kicked his crib apart. Our little stinker is growing up day by and day and it is a pleasure to watch and wonder where he's going from here. His new physical therapist, well actually one of his old PT's that has come back holds out great hope for his progress and is wanting to start him in pool physical therapy and eventually in Aikido! Every day with John is a great adventure and tomorrow our adventures will go on the road. We are headed to Iowa for the 4th of July weekend to celebrate with our friends there. John will surely enjoy their 5 children and hopefully they will enjoy John too! If you'd like to see our other new adventure this is the link to our second custom clothing auction. It's been fun to make and John has enjoyed being a camera ham for us and showing off his new clothes too! Here's hoping that you all have a great 4th of July weekend!!!

Hand Check!

You see that beautiful smiling face, well he's learned a new trick. Just this morning laying in bed with us for a few minutes before we got up and around he got that huge beautiful smile on his face again and voila the diaper was half off! Okay I know I'm a totally weird mommy but I'm so excited, this is such a normal baby/toddler thing. For the whole rest of the time (not very long I assure you, daddy was not nearly as impressed as mommy) before John had his clothes on he would look at us and sneak that little hand down there to see if dad was still guarding the diaper tape, a couple more times of finding dad's hand just far enough out of place to rip that diaper open and it was time for clothes! It promises to be a silly day in this Hass house, here's hoping it's a day full of smiles for you too!

A Long Awaited Update

Tomorrow will mark the 2nd whole month that John will have not been to the hospital for anything, admission emergency room or otherwise. We will properly celebrate by staying home. John has done pretty well for the past few days. After the accidental overrate on his formula last week the GI team was encouraged enough to try and see if a 500 ml bolus every 6 hours would work. The first 24 hour cycle with it John was doing alright, his appetite picked up and he was having no hydration issues. But by the middle of the second cycle his stools became looser and more frequent, though not a great deal more volume to them. We decided to go back to his previous routine and his system has been recovering slowly.

We also have had a medication change. We had been having problems with one of the anti-biotics that helped to manage that bacterial overgrowth issue John has. The GI team switched to a different anti-biotic that John has used before, a powerful one called Cipro. We give John one dose a day and so far we have had no adverse reactions and his poopins have improved some since we started.

This week is going to be a busy one at home for John. We are looking forward to him modeling a new outfit designed and tailored by his talented mom and getting the pictures and all those things necessary for that outfit to go out. We are also looking forward for John to get to see his physical therapist, Paul, who hasn't seen John in almost 18 months. It will be a big day for John and Paul. This week is also important because on Friday we are going to be going up to Iowa to see the God-Cousins and celebrate the fourth with them.

Happy Father's Day!

Here's hoping your Father's Day was great! Ours was blissfully quiet and lots of fun too.

Today was another school day and John was a hoot. He enjoyed the ride in, was so excited to be there and then did pretty darn good during his class too. He did very well playing with the little barn and it looks like his motor control is picking up some, he's becoming a little more steady with his movements. He was pretty consistent with 'go,go,go' and even got a few 'go again's in there. He's getting good enough that his 'work' is being made a little harder for him. Instead of getting away with just some gibberish when Amy, his therapist, wants him to repeat her, he has to at least make a noise that is getting close or at least has the proper amount of syllables in it. John is making progress one baby step at a time and most of those steps are taken with smiles!

The pictures show you our other new trick.

He is now able to get a spoon in his mouth, even a big spoon, whenever he wants to and is occasionally getting food in there too. He's pretty good with bigger things and can even manage something little like a cheerio now and again. His appetite is also picking up and his naps are getting weirder, you know that good toddler stage when they don't want to take a nap but need one and then if they go down late they are up forever. As in he's sitting next to me right now eating cheerios and hopefully will be going to bed soon!

We had what could turn out to be a very happy accident today, when his formula was hooked up after his ceralyte run the rate wasn't changed from 200 ml/hr to 86 ml/hr. After several hours of this the bag ran empty and we realized there was a problem. He's been unhooked for several hours since then and so far we've seen no ill effects. Depending on how the night goes we will be calling his GI nurse practitioner tomorrow to see if she is ready to try some experimentation. These happy accidents often work out very well for John and this one might also.

One last thing before I forget. John likes the new braces, we are still only putting them on him for an hour or so each day, easing into it, letting his feet get used to them. But the most wonderful thing is coming of it, he's stood to get in his gait trainer for quite some time now, but with the braces not only will he stand but he initiates his own steps into the trainer and even while we are supporting him doing this if we don't pay careful attention he tries to walk right out of our hands. We've not seen John's new physical therapist yet, but know that when Shawna gets a chance to read this that it will give her smiles. Every time he does it we tell him that Miss Shawna would be so proud of him!

First Hair Cut and Family Tradition

John got his very first haircut today!!! He was very good and sat pretty still until the lady sprayed his hair with water, then he had to sit on mom for the rest of the hair cut but did great and it's nice to see his "head" evened up. The Don King doo had to go!

The picture didn't show his haircut very well but I thought everyone would enjoy seeing him upholding an old family tradition from my side of the family. My grandpa was a great plate licker, my Aunt Janet is well known for the same and of course my mom, sister and I can lick the ice cream out of any dish you got. John has joined the crowd and eagerly licked the ice cream from this plate. Good boy!

Good news all around!!!

Hooray! We got the braces today. He's not gotten to do more than just stand in them for a minute or two because they won't fit down in his shoes. But tomorrow we'll go find him a pair of shoes that they will fit in and then we'll get to see how much they help. Everyone is holding out high hopes for these braces and so are we. They are extremely cute, we'll post a pic later this week and so far John likes them.

The other good news was the transition meeting yesterday with the therapists and First Steps coordinator and the principal from the Slater Elementary School. John turned 2 1/2 yesterday and so it was time to meet the school officials because at 3 his therapy and such will be handled by the school system. We were all kinda sweating this meeting because of the horror stories we've heard about school districts refusing to let the little deaf kids continue with the Moog School and other things. But God has once more put all the right people in all the right places for John's good. At 3 John's care will transition to the public school and the principal was impressed enough with the therapists that he currently has and the care that he will require to agree to contract with Moog and with our other therapists so that John can continue on as he is going. This is monumental good news, way beyond what my mere words convey. Oral deaf education is very specialized, it's a very new thing and the Moog School is one of the very few places that teaches deaf children to talk. To be able to keep John in Moog and with Desiree, his occupational therapist who has been with him since he was a year old is a big huge blessing in John's life and in ours!!!

Our little stinker is doing very well. We have of course been through the whole puking/med cycle again and his GI specialists are still trying to figure him out, but he remains cheerful and down-right silly. He is sleeping in full goal-position at the moment and storing energy up for tomorrow. I'm sure he'll be a hoot and will be looking forward to time in the gait trainer and playing. Oh and by the way, today he was good enough at moving around in his gait trainer purposefully that we didn't have to wait for him to come to the breakfast table he was waiting there on us!

Coke and a Smile

Our little boy is such a camera ham. Last evening we were downstairs getting ready to watch a movie and he kept reaching for the Coke can. We decided to snap a few pictures of his attempts to get into it (It was unopened or else we would have had a clean up to follow the picture taking)Sunday was a good day for John. He didn't have much trouble at church, he was good for most of the service, after worship he did take a few bites, but only of chocolate brownie. After John and his mommy got home it was time for him to take a nap, and he took a good long one. It was after his nap and dinner was made that the picture was taken. He ate like a little piggy; eating a good chunk of burger and bun and at least six whole fries. He went to bed a little early, but made up for it by waking up several times and needing attention.

Monday was a late morning for John, he slept in and woke up in a very good mood. After bath and getting dressed he was eager to get into his gait trainer and spend some time toddling around the kitchen. For breakfast he had quite a few blueberries and did well with them. After breakfast he was not wanting his gait trainer, but reached for his toys in the living room. After playing with them for a while he went downstairs to work with daddy in his study and had a good time in his exersaucer until he needed to be changed.

After being cleaned up and redressed he was ready for lunch. John ate about a quarter of a big kosher hot dog and totally enjoyed himself. He went down for his nap easily and stayed asleep for almost two hours. He spent the time after getting up from his nap playing on the floor with his toys, riding on his airplane and really getting a hang of pushing the go pedal, and finally in his gait trainer running into and over daddy's toes as he worked in the kitchen. He was delightful company at dinner tonight, but didn't have any appetite. After dinner it was time to get ready for bed and John enjoyed a few books and then we said prayers and put him to bed.

Since bedtime he has had to be changed once and bedding replaced including one stuffed friend that now has to go to the laundry. He is still making some noise in there, but we hope he will get to sleep soon. Tomorrow is a big day for him. We have school in the morning and after his speech therapy there will be a meeting with his therapists, his service coordinator Kathy, and representatives of the local school district to set up the transition for John since he will be turning 3 in December and will be 'graduating' from the First Steps program and will have to come under the school district. Please pray for us, this will determine what we will be able to do to meet John's future therapy needs.

Bummer!

No braces yet. The braces are made out of plastic which is heated and then pulled into shape over the casts that were made off of John's little feet and legs. When the plastic was pulled it had a problem and couldn't pass quality control so they are back to the drawing board and we are still in the waiting game.

We had a nice therapy session with Shawna, it sure is hard to tell a good therapist good-bye. Shawna has been with John, with us, since early last year when John could not sit up by himself, couldn't roll over at all, cried when you put him on his knees, stood for only seconds at a time and then only with much support and cried through therapy most of the time, oh and lets not forget needed a mommy break at least twice during the hour long session. She's been through more hospitalizations than I can remember, and each time when John came home a little weaker, able to do a few less things, and a little crabbier she would start where he was and gently help him get back to where he had been before he got sick and a few steps further. We will miss her dearly, but know that God will provide a good therapist for John and that all the kids that Shawna takes care of will be well blessed with her loving care!

We started John's vitamin E supplement on Friday and of course aren't seeing any dramatic results, but then he's only had two doses and we of course have little or no patience.

Friday on the way home from Columbia, John slept a good bit and then when he woke up and we weren't getting out proceeded to scream all the way home! He's getting much louder or our hearing has drastically improved with time. There were of course no gypsies to sell him to on the way so we brought him home for a little much-needed rest before we headed to church to help set up for the rummage sale.

At church he was in a great mood. We took his gait-trainer so that he could wander around while we helped get things set up. He loved it. At first he was content to just kinda wander around the parish hall but when he found the open side-door to the sanctuary he started sneaking to the front. It would get all quiet and then we would notice that he had disappeared again. The little silly guy would be stuck between the pews and folding curtain alongside the pews heading to the front with all his might. Never did figure out exactly what he was after, but once we closed the door he decided to go explore the kitchen. He was in great form all night and had a wonderful time.

This morning he slept in some and then was ready to go again. We took him to church for the rummage sale for a while, of course we didn't take the gait-trainer because there were too many people around but one of the nice ladies, Barbara, held him and let him play in a utensil drawer and so he had a good time anyway.

The rest of the day has been rather peacefully dull, well except that after his nap he turned circles in his bed enough that he had to have another bath. Silly guy! He played well downstairs while I was working on bulletins and now is fully refusing to go to sleep. He's asking for his ears and acting like he's ready to stay up indefinitely. Poor kid, I just don't think it's going to work.

A Big Update

Since Sunday a great deal has happened with John. Monday was a day off for all of us and John was doing well in terms of eating in the morning, but as the day went on he started having tummy trouble with too many poopins. We talked to the GI team at St Louis and we switched around the way that we gave him the Metamucil to half the amount of Metamucil in the same amount of water only once a day. This seemed to help through the night and with some extra fluids he slept peacefully.

Tuesday was a big day with school for John, it seems that he is getting more familiar with the trip as he gets excited about school a little bit sooner each time we go. On the way we stopped to pick up breakfast at McDonald's and John ate very well, almost a whole egg from a biscuit. His speech therapy went very well with Amy giving us some homework for him and also giving us some possibilities as to his speech habits that we have heard from him. It is possible, though not clinically diagnosed, that John has a neurological issue known as developmental vocal dyspraxia. This condition fits what we see John doing vocally. This is why he acts like he has so much to say but can't seem to get it out. The way Amy described it there is an obstacle between his brain and his motor controls for speaking, and the more situational stress or sensory input involved the greater the obstacle. This is why when he is relaxed and reading a book with mommy he can repeat a complex work like ladder once on his own but can't when prompted by mommy, daddy, or Amy. It also explains why his little mouth is moving so much when someone is talking to him on the phone but he is completely silent. There are therapy plans that Amy is investigating and we will probably be looking at months if not years of speech therapy ahead for John. The rest of Tuesday was spent getting errands taken care of and the opportunity for John to have more fast food, which he wasn't too thrilled with. When we got home John went down for a good nap, got up to play and be cute, and then went to bed and slept well through the night.

Wednesday was a day of contact and information about John's various issues. The GI team found out from John's latest blood studies that his levels of vitamin E are low and so we will be picking up some supplements for him tomorrow. John's appetite wasn't great through the day, but he did eat some and his poopins were better than Monday's. He took a good nap that afternoon and spent the time afterward in his gait trainer and playing and being especially cute for our friends who had come for a visit. He went to bed a little later than usual and had a good night.

Today hasn't been as good for John, especially this evening. He did eat pretty well to show off for our friends, but hasn't eaten anything since then. His poopins have not been as good, but for the most part today has been excitement and play. He wore himself out playing in his gait trainer and and has been so cute especially with the way that he has been wiggling around in his crib. This afternoon we got some pictures of him playing in his crib before we got him up from his nap.



He was turned sideways on his back with his feet stretched out over the top of the side rail. The little boy was lounging and playing with all his stuffed friends. This afternoon was full of fun for him but he didn't eat anything else and he started acting like he was going to have some trouble through the night. When it was time for bed we laid him down, but he wouldn't go to sleep. We got him up to see what he needed and after some big burps he finally let loose and puked a good bit. After cleaning him up and getting him ready for bed again we put him down again. He acted like he would sleep, but after a little while our friend, who was sitting closest to the baby monitor, swears that he said, 'Mommy, want daddy.' It wouldn't surprise us if he did say that. Well of course daddy went and got the little sentence speaker out of bed. We cuddled for a little bit and finished the card game we'd been playing. Then we tried putting him to bed yet again. After a little bit we heard some strange sounds on his monitor and went in to find that he was starting to puke again. This time he needed a bath to get cleaned up, but obviously felt better for it, because he had to take one of his bath toys with him when mommy took him out of the water. After some tummy rest and getting him back in a clean bed we have set him up for some extra fluids and are praying that the rest of the night will be a quiet one.

Tomorrow is a big day as we are getting his new braces for his feet and ankles and we'll be seeing his PT Shawna for the last time. She has done so much for John, but now he will be seen by another PT.

Pentecost Picnic Pumpkin

John's day began with overwhelming cuteness. He needed to be woken up to get ready for church, and he was hilarious. He stretched his arms and legs and rolled his shoulders and hips and yawned and tried to pull his blankie back over him. When he was pulled up out of his bed and accepted the fact that he wasn't going to go back to bed he put his fingers in his ears and started smiling. We got him ready for church and had time for breakfast, but he wasn't interested in egg or bagel.

During worship John behaved very well, but preferred to sit on the floor instead of in the pew, he and his mommy sit in the front pew anyway so this was not a big distraction. He had a couple of occasions that he got fussy but overall was a good boy this morning. After worship he was his charming self for the ladies of the church. He and mom enjoyed the walk back to the house and got everything set up for him to go down for a nap, including his dose of metamucil.

When he woke up from his nap it looked like he had the remnants of a sea monster in his diaper, but he had good consistancy and was feeling good. Today was the church picnic for the congregation out in the country, and we all went out to visit and have some fun. John was a great helper, holding on to tea bag wrappers for his mom, and letting the young ladies hold him and visit with him so that they had something to do at the picnic. He did eat pretty well at the picnic and did have a lot of fun. When it was time to go he kept looking at daddy and looking at the young lady holding him, and looking back at daddy, as if to say, 'Can we take this one with us please?'

When we were getting ready to go John began to show his two attitude. Admittedly we were talking instead of going and he was already strapped in to his car seat, but he thought that was the appropriate time to fuss, holler, and pull out his hearing aids. We drove home with the fussy pumpkin and got him cleaned up and ready for bed. We gave him the second dose of metamucil as well and he was ready for bed. Late tonight he had some tummy trouble and started puking. After cleaning him up and getting his bed squared away he went back to sleep quickly. We gave his some bowel rest and then have started his formula again. Hopefully he will sleep through the night and will have no further trouble.

A Very Good Day in Toddlertown

Today John has made some improvements in all areas. He woke up with bright smiles this morning after an uninterupted night of sleep, by him or us. We had time to get things ready for his OT Desirae to show up. This was the first time she had seen him in his gait trainer and moving around. Before today we had either just gotten him up or had already removed him from it when she arrived. She was thrilled to see how well he was able to follow her around the kitchen. After seeing him in the gait trainer we took him out and worked on the floor with him in a crawling position and on his side supported on his elbow. This was the first time that he didn't fuss and holler the whole time we were working on him, just part of it. The time flew and therapy was over. John accomplished a great deal, and everything went alot smoother. We also got to pass along the Bumbo chair that had helped John a great deal in the beginning, he had graduated from it weeks ago. Desirae has another little boy that she works with that can use the Bumbo chair, and will mark it, "From John with love."

After Desirae's visit we sat down to eat breakfast, and this morning the little stinker was in fine form. We had cereal and once again he would only eat blueberries from daddy, at least he ate a good mnay and kept them down. But when he was offered a bite off of dad's bagel he bit it off himself, but then looked right at dad and rolled it off his tongue onto the tray. His attitude is certainly not delayed in its development. After therapy and breakfast he was tired and needed changing so we cleaned him up and put him down for a nap.

He took a nice long nap and woke up with big grins and fingers in his ears. John spent some time playing in his exersaucer and then we decided that he looked like he needed some crab legs since he hadn't been very crabby at all today. We went to our favorite Chinese buffet and the crab legs were very good, even John agreed. He ate well and was of course very entertaining to the waitress, who is always glad to see and help him to smile. After dinner we went to the store to pick up a few things that were needed and John was very much the charmer to everyone that looked his way. We brought him home and got him ready for bed and he is now sleeping peacefully, hopefully it will be another good night.

The Saturday Sillies

As you can tell from the picture our little silly has had a good day! He woke up with smiles and fingers in ears and wanted in his gait trainer to play right after he had a good long drink. He is getting better everyday about moving purposefully and has gotten the hang of pinning a parent against a cabinet. He thinks it's funny, and well so do we, so of course he keeps it up.

When he woke up from his nap this afternoon he was especially exuberant, full of giggles and smiles. He would give himself tickle, tickle, tickles and then giggle and giggle and then he'd give daddy tickle, tickle, tickles and giggle about that too. He was very talkative right up until he heard Papa on the phone and then he was all smiles and huge eyes and excited but no noises, except that at the end he finally decided to honk his nose for Papa a couple times.

He's not eaten as well as usual today, but we are experimenting with giving him some metamucil to keep things moving so it will probably take a while to adjust to that. The true test will be tomorrow, if the sweet little old ladies brought donuts and he eats them we'll know he's on the up swing.

This evening at bed time, after prayers he absolutely had to have a drink out of daddy's bucket - that big cup you see in the picture. As you can tell it was a good time had by all. He is growing more and more thrilled with open cups, which he spills very well, and straws, which he mostly flails around like a sword and less and less thrilled with his sippy cup. This is the same way that he switched from bottle to sippy cup last year and so we figure we're building up to a change. A messy and rather interesting change, and one in which we are ever so grateful that he really only likes to drink plain water.

A Miniature but Patriotic Ham

The picture above was taken as we were modeling a new outfit on John for the fourth of July. It is a custom boutique set that his mom made for him and that she will also be making for another child whose parents have the winning bid on ebay. This is not intended to be an advertisement. It's just a chance to share how good John is looking this week and to explain in part why we haven't been keeping up with the blog too well lately.

John has been going through some tummy trouble of late as we have been noting previousely. In talking to the GI team at Children's were working on switching the antibiotic routine that he has been on. The medication that is supposed to be the magic bullet for Short-gut bacterial overgrowth issues doesn't seem to be working on John. So we may be looking at other meds to try and strike the proper balance in his intestines.

Even with these issues he has been making progress with his strength, endurance, and ability. He is getting around more as well as more intentionally in his gait trainer. He isn't able to make great progress on the carpet yet, but once he does the dogs better watch out or get used to being chased by the two year old. This should be helped, or rather aided and abetted, by the new AFOs that John will be getting on June 9th. His PT Shawna was with us for therapy on Thursday and was thrilled by his progress and he has been helped immensely by her aid and support. Shawna is going on to other things and next week after John gets his AFOs will be his last session with her. We are grateful for the good she has done for John and we will all miss her, especially John.

We hope that the rest of the week will be quiet and that we can get John through this to some more settled progress both with his belly and with the rest of his efforts.

You can't hold your donut and clap at the same time

John's day has been adventurous but all at home for this memorial day. John woke up early this morning puking and having some tummy trouble. The episode passed quickly and there wasn't a great volume of output, but he was reluctant to go back to sleep in his own bed. He got to sleep in the middle for a little bit, not that mom or dad got much sleep. When we were all ready to go this morning John immediately wanted to get into the gait trainer. He stayed in it until breakfast was ready, sat in his chair and ate well for us, and wanted to go back into it. He stayed in His gait trainer until he was ready to go down for his nap. After His nap he wanted to play with dad and much fun was had by all. For dinner John had applesauce while mom and dad ate something too spicy for him.

Dinner time was the big fun for the day. John will eat for us, but on his own terms and conditions. He will only take a bite from one of us if we are both holding his hands. This is a case of reaping what you sow. John has gotten active enough that when he doesn't want to take a bite he will grab, bat, and push the hand, spoon or fork until the bite is lost or the parent gives up. To which we responded by holding his hands and he would then take a bite. Now he laughs and holds out his hands whenever we want him to take a bite.

He ate well for us. After dinner we had some donuts that were leftover from church yesterday and we put the donut on the tray for him and he picked it up, tore it apart, and fed a good portion of it to himself. Whenever he would feed himslf he would smile real big and try to clap for himself, but found that he couldn't for the handful of donut that he wouldn't let go of. He has also gotten into the habit of playing with his hair lately, so now whenever he makes a mess while eating it has become more extensive.

This evening has been a little interesting. He went to bed fussy and had some trouble going to sleep. He has woken up twice already. Once because he was hungry and needed a bite before going to sleep. The second time because he needed to be changed. He wanted to stay up the last time, asked for his ears, and reached for some books on his shelf. Of course he was put back to bed. He hollered for maybe a minute and then went back to sleep. Hopefully he will stay that way, though there are noises coming from his room that indicate otherwise.

Let your yes be 'yeah'

The past couple of days have been rather busy for John's mom and dad, but they have gone very well for John. It was an easy day Thursday for John with no appointments or therapy sessions, but it was by no means uneventful. John spent most of the morning in his gait trainer and is beginning to get around pretty well, especially backwards. He has the habit now of backing himself up as close as he can get to mom or dad and patting us on the leg, whenever we are working at one of the kitchen counters he gets behind us, it appears he wants to keep us from going anywhere. He also spent a good amount of time on his ride on airplane. He has gotten an understanding of how to make it go, but still isn't bold enough to really do much more than tap the peddle that makes it go. Thank goodness. Thursday was also Ascension Day and I (Mark) had the opportunity to preach that evening at our sister congregation in Marshall and all of us went. John sat in the front with mom and I got to sit with them for most of the service. John had a very good time and got to see a whole lot of new faces, people who had been praying for him for a long time and were glad to finally meet him.

Friday was a big adventure as we went down to Columbia and got to meet a very special lady named Lynne who made casts of John's feet and legs to fit him with his new AFO's - braces to help his feet stay in the correct position so that he can walk better and faster, etc. - watch out dogs! Twice on Friday John treated us to a 'yeah'. Both times he had his hearing aids out and we were holding them asking him if he wanted them back in and each time he looked us straight in the face and said 'yeah.' We were pretty impressed. After we got home from Columbia on Friday he spent a good part of the afternoon playing in his gait trainer. He's now gotten to where he can pretty much go where he wants, at least on the linoleum, and the dogs are giving him a wide berth. You can see the relief on their faces when he goes down for a nap or to bed at night.

Today has been delightful. He woke up with smiles and was ready to play. He can now pull spices off the spice shelf, open drawers and cabinets, although he can't get things out yet because of the way the gait trainer is made, but you should see him make a bee-line for an open dishwasher. We have to quickly pull out the sharp knives and such because before you can do much other he is there pulling things out of the utensil basket and banging them on things. Lately we've been having him show us where he wants his hearing aids. Of course you can see the budding sarcasm when he sticks his finger in his ear but tonight his left hand was full of the all-important-table-knife, which he was most definitely not putting down, and so when I asked him where he wanted me to put his left hearing aid he looked at me for a second and then reached around with his right hand and stuck that finger in his ear. There is always something to celebrate.

John didn't eat as well today as we would have liked, but he did eat some and so that is a comforting sign. He enjoyed playing with his books and toys before bed and now every time we count anything he has to tickle, tickle, tickle himself. It is too cute. He likes itsy bitsy spider, but mostly just likes to make the spider with his fingers and let us do all the rest. During prayers he's now decided that folding his little hands is good once in a while, but about half way through has decided that we all need to hold hands like we do at meal prayers. He is so cute when he is sitting there demanding your hand so that we can go on with prayers.

Appointments and accomplishments

Yesterday we went to St. Louis for an appointment with John's GI Nurse Practitioner, Sandy, She was impressed with the progress he has made and the increase in both his weight and ability, He is now officially 21 pounds. She wants us to keep doing what we are doing both feeding and medicine wise, and she is going to start networking with some other specialties about the constipation issues. Children with Short Bowel Syndrome almost never have constipation without there being obstruction problems, but with the Prune Belly Syndrome and the lack of stomach muscles to push things through John simply doesn't have the umph to keep things going when the poops get too thick. So Sandy is going to do some research and make some cross discipline connections to see if she can come up with a plan for John.

John's appointment took all of a half hour, but there was also a number of good friends to see from all the time he has spent in their care. After getting some blood drawn at the lab, no fun for him, we went up to see our favorite nurses and PCAs on the eighth floor. We got to see a few who were there that day and they were surprised to see how big John had gotten. It had been so long since he was there, over 2 months from the last appointment, that it took a good 15 minutes for him to warm up to them and start visiting. As we were getting ready to go off the floor he even let one of the nurses hold him, but he still kept his eyes on mommy to make sure she didn't go anywhere.

We also saw John's social worker from there, Sharon, and it was wonderful for both John and us. Sharon has become a great friend to us, and even though we no longer need her professional care as much as before, we enjoy spending time with her and have developed a great personal relationship. We also ran into one of the transport nurses, Donna, who has been there for John at some of his most critical times. This was the first time she got to see John doing as well as he is. She was so happy to see him and us and had some very strong words of encouragement for us and asked to see us when we came in the next time. The PT from John's hospitalizations, Christine, had e-mailed after reading this blog asking us to come up so that she could see John. We met her for a few minutes and she was so happy to see John doing as well as he is. She wants us to bring him in his gait trainer next time.

After visiting around the hospital we went out to eat with our dear friend Jodi, she has been John's Patient Care Assistant (PCA) for many of his hospital stays and she has become a very close friend. We spent hours visiting and had a great time with the silliest little boy imaginable. He charmed her out of chips, ate some of her brownie, and generally hammed it up that he attracted the attention of people at other tables.

On the way home we stopped at McDonald's to try out John's first happy meal. He ate about a third of the fries and burger, but had trouble keeping it down and gave back what he ate as well as quite a bit extra. After the long ride home we brought him in, cleaned him up, said prayers and put him to bed.

This morning he woke up early and had a good time pinching mom's nose and stealing dad's glasses. He did very well playing throughout the morning and ate breakfast well for us also. His PT, Shawna, came earlier than usual this afternoon so mom had to keep John especially occupied so that he would stay awake. Shawna was very pleased with his progress in the gait trainer, and she also adjusted it to increase the height so he'll stand up more. She will be seeing us again on Friday when we get John fitted for some special orthotics, AFOs, that will help John straighten his legs to walk. After she left it was time for John to finally get his nap. He slept for a good while and woke up happy and wanting his ears.

He had his moments this afternoon when he wanted his mom's complete attention, and because she was also doing other things he decided that his hearing aids needed to go in his little cloth toy box. This got him some crib time, but not for long as we went to the church in town this evening to do some preparations for next month's worship services. He was an entertaining distraction and was very happy to have the attention. When we headed home he was getting very sleepy and silly and so we got him ready for bed as soon as we came inside and said prayers sang a hymn and put him to bed. He is now sleeping deeply, and we are looking forward to having nothing extra happening tomorrow.

Surprises and attitude

This morning John woke up wanting his diaper off and his ears in. He was very happy and lively as we got breakfast ready and got everything in order to go to school. He did surprisingly well with his ears through the morning, not trying to take them out or intentionally causing feedback by placing his head against something.

After taking care of breakfast, where John did not eat much at all, we got on the road to Moog and had a wonderful trip almost the entire way down. We stopped on the way for gas and we got him a donut to see if he would eat something and maybe help with the constipation issues. He ate just a few bites and then slept most of the way to school. When we were pulling off the interstate John started puking. He puked a pretty large volume but it was mostly the ceralyte that we were pumping into him at the time. We arrived at school with enough time to clean him up and change his clothes, but it is surprising how happy he was when we turned into the school parking area and he knew we had arrived. As mom and dad were getting him out and cleaning him up mom says that he said, 'oh God'.

When we had gotten settled in for speech therapy John was a little wiped out from the puking, but he was ready to go to work . At the same time though he was definitely showing his attitude doing things his own way and even though he knew exactly what he was supposed to do his teacher had to repeat herself far more often today than on previous school days. But of course he was so cute the whole time he was being stubborn, so it was hard not to laugh. Over all he did do what was expected of him and had a good day at school in spite of the puking and the attitude.

He did well on the trip home, but the respite from ear pulling was over. We weren't ten minutes from school and he was handing us his ears. He slept most of the way home and after we had gotten him some lunch, which he ate pretty well, went down for a good long nap. He woke up happy and wanting his ears immediately. We played for a few hours with toys and read books until it was bedtime. As we sang a hymn he played peek-a-boo with a piece of today's junk mail. While we said prayers he alternately folded his hands or tried to hold ours. He was ready for bed and went to sleep without a peep.

We have an early start tomorrow as we are going to St. Louis for a GI appointment. And since it's also John's mommies birthday we will be looking to do something special.

A good day - on the whole

This morning John woke up happy and stayed that way, at least until it was time to go to bed this evening. He has done some pretty impressive work that has us happy and looking forward to his GI appointment on Tuesday. We were given instructions that when John started looking like his stool was getting too thick to give him some help with a suppository. He needed one after he woke up because of what we saw, and he didn't fuss much about it. Actually mom and dad have more trouble with it than he does.
All went well until about an hour after breakfast when he started puking. He gave us back all that he had for breakfast and then some. But after getting cleaned up having a little tummy rest and a little nap he was ready to go. We took him around the block in his gait trainer and he helped move himself pretty well most of the way. When we were on the street behind our house we looked back to see what looked like a straight line of brown paste in the middle of the road. We looked down at John's shoes and saw what you guess we saw. Apparently the help we gave him really worked.
After nap time and lunch we had some good playtime with a game called UNO Attack that uses a card spitting machine as part of the game. John enjoyed repeatedly pressing the button that would sound a bell every time but would spit out multiple cards randomly. Then John watched TV with dad while mom worked on Sunday service bulletins. All in all he was very happy playing with books and dad's nose, eyes, ears, and hair, until he was ready for bed then nothing would make him happy until we had changed into pj's said prayers sang a hymn and went to bed. He is now sleeping soundly and peacefully. What a sweetie pie.

Anything for a laugh!

John's day was great, it was better than great, John's day was awesome - and so of course then was ours!

John woke up this morning with chatter and smiles. We had to take him to get his labs checked and he 'talked' all the way to Marshall. On the way home he had a great time eating egg from McDonalds and chatting up a storm.

We got home just in time for Miss Desiree, John's OT to be here. She had new things for him to play with and new things for him to do and he loved it. She helped him into a crawling type position, on his hands and knees, and he was able to stay there for a few seconds at a time on his own. This is a big deal for John, his arms have never been strong enough to do that before. She brought a See-n-Say for him to play with and he loved it. He was all smiles the entire time that she was here, even though she really made him work hard.

After she left we got his lab numbers. The CO2 that had been down to 14 is now up to 27, that's good, that's darn good! And you can see it in John's face, his actions and his attitude. When his electrolyte numbers are off he's cranky, easily offended, and tired but on days like today when his numbers are good he is full of mischief and smiles.

We did find out one very important thing today. No matter how much Maggie, the little black evilness of a dog, likes John throwing food on the floor, or better yet handing it to her, she does not appreciate having a glass of milk kicked over on her, and she will not lick up the milk no matter what you do. She is just offended, go figure.

This afternoon John came down to the basement with us to watch a little tv and cool down, it was hot here today, he enjoyed playing with books and then his silliness got the best of him and he started sprinkling himself with water from his sippy cup and giggling. I'm not sure if the water was funny, or the repeated efforts to sprinkle his own head and konking himself in the head with the sippy cup was the deal, but at any rate there were lots of giggles, both from John and us.

He finished the evening with scrambled eggs for supper, the milk incident, and then pulling his ears out during prayers, and asking to have them back in. When he finally got to bed he was ready to be there and is now sleeping peacefully. The dog however is still offended!

Puking, pooping and yuck!

Our day started out at 5am (obscenely early) with the sound of John puking. We got him all cleaned up and back into bed and again at 9am (not obscenely early but still earlyish) we went through the same thing again. Poor little guy. Dad was gone to be with a parishioner having a procedure at the hospital and it was just me and John hanging out hoping that he would feel better. So through the day we mostly had pooping, puking and cleaning up and then John would be ready to go back to sleep. Needless to say he ate nothing but was still glad and had smiles for dad when he came home. We took him to the lab to find out how bad his numbers were and they aren't good, but at least we are still home. So for the night we are watching him and making sure that he doesn't look any worse. His CO2 was down to 14 and so we are making some med adjustments and hanging on until we hear different from his GI team tomorrow or his numbers come up when we do labs again on Friday. So I guess the title of this update could have been 'holding our breath' but that will probably be tomorrow's.

Another interesting day

John woke up this morning with his belly a little large and a very upbeat attitude. He spent the early part of this morning in his gait trainer and tried his best to be right under our feet as we were getting things ready for breakfast. After we had moved him to his chair for breakfast he was not very interested in anything that we tried to feed him, and became less interested in anything at all. He would not give us any indication of what he wanted and then in frustration pulled on the tubes to his hearing aids until the molds popped out of his ears. We have been getting a little lenient of late about this so we decided today would be the best time to bring this back in line. We took him and put him in his crib and set the timer for 15 minutes.
After coming back out in a somewhat happier mood John went downstairs to dads study and spent some time in the exersaucer next to dad's desk with some toys. This lasted for a good while and John was entertaining and was happy as long as he had dad's attention, but when there was work to be done, and John grew bored of the toys in the box he decided to add his hearing aids to the toys. At this point he came back upstairs and back to his crib. After a further 15 minutes of downtime mom picked him up and had to change his clothes from another bottom explosion. This time he was not too thrilled with anything. After he refused his hearing aids, mom put him on the floor to sit and play with his toys from his toy boxes, but instead he chose to throw a typical 2 fit.
There were several more displays of attitude today, more hearing aid pulling that got him put in his crib, he even showed his attitude to his PT. Usually when she comes it is fun time, especially when they go outside. Mom and Shawna led him in his gait trainer to the driveway, and from there he cooperated beautifully until he got to the corner and then he would go no farther. He would go backwards and sideways but no farther down the street. All in all Shawna was pleased with his physical progress. It wasn't until this evening that John the good little boy we all love showed up and was happy to play and interact. He did not really eat anything today, and his belly is not doing as well as we hoped, but he has gotten more of the more solid stuff out of his system so that we are hoping that he has a better day tomorrow.

Happy Mother's Day!

Hope everyone's Mother's Day was great! Ours was fun, interesting and enjoyable, despite the tears that were shed now and then because of missing getting to celebrate another holiday with Mark's mom.

John had a great time at church and behaved quite well right up until the benediction and then he was done with all dad's turning around and looking at him, but not taking him. John cried and pointed at daddy until he came and sat next too us and put John in his lap for the last hymn. Then all was peaceful. He had a really good time after the service enjoying a bit of cake with the ladies and then was ready to come home and get a short nap in before daddy got home.

After the nappins was over he was ready to play and had eat, eat, eat. Despite his full belly and trying to resolve some intestinal issues he did well, but tired out pretty early and went to bed early. But of course that wasn't the end of the day as he was ready to play again later and then sat up with us watching Narnia until 11p. Our little gigglebox had the tired sillies and was clapping for something, we don't know what, and then he would giggle some more. Whatever the joke was it must have been good because this went on for a while. Finally back to bed for a good night sleep before school this morning.

Before school this morning John was ready to be up and playing and so we put him in his gait trainer while we were getting things ready to go.



He pushed himself from the kitchen linoleum about half-way into the living room (on carpet) and then was all over the kitchen some more. That's the first time we've seen him be able to push himself up onto the carpet. After some fun in the gait trainer he was ready for breakfast and then off to school.

Usually John will nap about half of the way to school, an hour drive, but not this morning. He was nearly asleep about 20 minutes into the ride and then started clapping and giggling and little, evidently last nights joke was really good, and then started to stick his fingers in his mouth get them all nicely spit coated and stick them together, pull them apart, you know silly 2yo stuff. He was a little wild man in school, doing what he was supposed to do here and there but cracking himself up and Miss Amy too! At one point Mark and I both had to hide our faces because John was not doing what he was supposed to be doing, but was so funny that it was impossible not to laugh at him being bad. He was a stitch.

After we got home he did lay down for a bit, but then was up and ready to play. Today is the first time that I've just set him on the floor in his room with his toys and let him play alone for a few minutes while I got a few things done.



He truly enjoyed himself as you can see. He played there for a while, then was ready for some dinner. Hmmmm....mostly he wanted the meat and the steak knife, ah yes that Y chromosome is taking control! Needless to say we didn't let him have the steak knife but instead he had a delightful time stabbing a potato log with my fork. Always the entertainer. When Mark left for confirmation John and I went out for a walk. He was fascinated enough with the people next door that he was 'walking' sidways down the driveway and even after we got into the street he kept wanting to turn and watch them. He made it part of the way down the block and then was just ready to come back, Monday's really wear him out but we see each week that he is able to do a little more, stay up a little longer, etc. For now he's resting but I'm sure he'll be back up again later when dad gets back home.