Lab Results

Yesterday we got in some of the lab results from all the tests that were run while John was hosptialized the last time. The expanded newborn screen that tests for metabolic degenerative disease and such came back normal and the acid levels in John's cerebral spinal fluid was also normal. After talking to a couple doctors about this yesterday we understand it to mean that so far they don't know what caused the akinetic seizures and possibly won't ever know, while that's not exactly comforting, it does mean that they can't find one of those devastating things, and that is comforting. John will have a follow-up appointment with the neurologist on the 18th, and we'll find out more then. We also found out that he is a little short on B vitamins, so we're adding another vitamin for him to take, he does great though and now takes all his meds by mouth and willingly!

Best of all, John is doing great, learning more and more every day! Today his OT comes in and it's also the first meeting with the parents as teachers lady. We counted signs a couple days ago and John can do over 60, and over half of those he does spontaneously and appropriately! He's also getting fast enough with 'more please' that you have to be watching to catch the 'more'.

Happy New Year

Our first day of '07 was filled with resting, relaxing and hanging out. John got to go to Walmart with daddy to have the oil changed in the jeep and thoroughly enjoyed wandering all over the store in his gait trainer while they waited for the jeep to be done. After a late afternoon nap he was ready to play and hang out and watch Curious George.

We'd love to make a New Year's resolution of 'no hospital' but since that is largely out of our hands we'll just keep our same old plan of life that every day be the best it can be whether we are at home or not! John has big things coming up, speech therapy goes to 3x a week this year and we start with Parents as Teachers tomorrow, I'm still pretty skeptical on that one, but we'll see how it goes.

He got to spend New Year's Eve at the party at Mark's country church and had a great time ringing the bell during bunko and tossing a domino here and there during a game of chicken foot. He was amazed at all the kids and spent a good bit of the evening just watching everyone. He loved the enormous Christmas tree, and oh yeah, the ready availability of chocolate - seems like everyone brought some! He made it until nearly 11 and then he was pooped, and so were we, so we brought him home and he was so ready to snuggle in his bed.

Real Kisses

John has been working on learning to suck through a straw, and has accomplished it even though he isn't horribly efficient with it. Thanks to that he learned to make a little sucking noise into his hand, this was so cute, and he thought it was so funny the first couple times he did it. It took a couple days for him to learn to make the same little 'kiss' noise into our hands and today he got it and then was able make real pursed lip kisses! It was so exciting, and yep I know I'm weird, but we had a big celebration on today, the first day of real kisses!

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.