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?