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.