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.