After a few quiet months without doctor's appointments, July is going to be busy and today started it off with the dysphagia clinic. In Sacramento, they didn't have a dysphagia clinic but it works kind of like the craniofacial clinic and brings multiple specialties together for one long appointment. We got checked in and into a room and then it was time for a height and weight. Fully clothed I was at 25 lbs 8 ozs - so my parents decision to pump up my volume in the last six weeks worked like a charm - I made up the weight I had lost a few months back. In fact, when the RN went over the growth chart with my parents I was in the 90th percentile for height to weight! I am still small for age compared to other kids but I am doing great when compared to my previous growth charts.
In the next hour, the room was filled with lots of folks - dietician, GI, RN and speech pathologist. Mommy didn't know that GI was part of the clinic so she discovered my GI appointment two days later was able to be cancelled - yeah! Mommy had several items on the agenda for the appointment - changing out my formula, addressing the issue of my g tube getting "sucked in" and establishing care with feeding, speech and GI. First up was the dietician and GI. They both agreed that I was ready to move to an older soy formula. Since Mommy already had some at home for a trial, they encouraged Mommy to start me on it and then call them if it went well so they could get a prescription for the supply company to provide it. Because my growth was on an upward trend they didn't make any changes to volume. They had asked my parents not to feed me for several hours in anticipation of doing a feeding trial so like clockwork, my g tube button sucked in while the GI was in the room. Although my parents don't like seeing me in pain, it was the first time a doctor has witnessed what my parents have been trying to describe. The GI was floored - she had never seen anything like it (just like the last GI). My parents pointed out that the surgeon who put in my g tube in Sacramento puts it in a different location then what is standard in the field. My parents have wondered if that may be contributing to the problem and the GI was curious as well. Since nobody is anxious to have me endure another surgery to move it they decided to change my button size and see if that helps. They are hoping that with a longer stem maybe it will help. So my parents got a prescription for a different size and they will give it a shot and see what happens. If that doesn't help the next step will be to put some barium down the tube and figure out exactly where the tube is located in my stomach.
The speech pathologist came in and helped my parents figure out a good resource for speech and feeding closer to home. She also asked that the new therapist complete a swallow study since it has been almost two years since the last one. To assist in my own self feeding, the speech pathologist also gave my parents a resouce for occupational therapy as well. Helene had me eat and drink a little in front of her and also talk a little by covering my trach. She was pretty impressed with me and told my parents that of the five current Nager children working with the craniofacial panel at Primary Children's, she thinks I am the highest functioning. Mommy knew of only one other child with Nager that just moved to the state in the last few months - so she was shocked to hear there were three others in addition. Helene explained that because Primary Children's is one of the only children's multispeciality hospitals in the region, it is possible the children don't live in Utah and that they end up seeing the children with the most severe cases.
I will go back to the dysphagia clinic every 4 months for a check up but continue to get speech, feeding and occupational therapy in between. After a long day with no nap I was definately ready to get home.
Peyton Nicole Smith