Thursday, July 27, 2006

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!

Tuesday, July 25, 2006

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!

Friday, July 21, 2006

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 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.

Thursday, July 13, 2006

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.

Tuesday, July 11, 2006

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!!!!