Feeding Clinic

Wednesday Eric had an appointment at the feeding clinc. This was his annual appointment where his whole team seen him, including the GI doctor. I knew going into this it was not going to be fun for either of us. The appointment was set for 8:00 in the morning. We were off at 6 am which is way to early for both Eric and I. He loves the ride. Good thing, we made it there with maybe 10 min to spare. We were called and it was time for weight and hight. You would think this would be the easy part of the appointment (for a kid anyway lol), but this is Eric. He has to take off his shoes before he steps on the scale. I can understand the reasoning behind it. This is heavily used and expensive equipment and they need the most accuaray possible. He would have no issue stepping on the scale if I didn't have to take his shoes off. Of course I have to go through that extra step and he gets it in his head that he is stuck there for a while since his shoes are off and he starts getting upset and fighting. He has to stand still on the scale too which he don't want to do. Once we finally finished that it's time for the dreaded height measurement. The clinic does this by putting them against the wall and this thing comes down on his head and the height measurement shows up on the machine. Eric HATES the mere thought of that thing coming down on his head. It is virtually impossible to get him to stand there so they can accurately measure him. He just sits down, kicks, screams, grabs at me, scratches me. It is not fun. Since it's been 12 months getting his height somehow was a must. We gave up on that machine and we were going to get him to stand against the wall, mark it and use a tame measure. We finally got what we needed but it was a fight to say the least. Next we go to the feeding room. The nurse comes in soon after and asks her questions. Since he is not on any meds, not having any real physical problems her visit was quick and easy. Next we talked to the nutritionist about what he has been eating/drinking. She wants to increase the amount and variety of baby food we are mixing in his milk so he can get more nutrients and exposerure to different flavors. This time we had a speech language pathologist speak with us. This was a first. I am glad to see this because his feeding adversions are as much sensory as they are behavioral issues. We were talking about trying to change his cup and increase the textures he will accept. That will take a while and a lot of work. The psychologist then came in. She wanted to do a behavioral eating session with him but I forgot his cup. She got out cheerios and she wanted me to get him to eat them. That was met with another Eric tantrum. He wanted nothing to do with them. He was still trying to calm himself down from the height measuring machine. After this was attempt 2 at his height. They were able to get a good enough estimate after calling in 2 other people to help with him. After this was done we went into the exam room and waited for the MD. Eric was anxious about this. Luckily it was a quick exam and a talk with me. The doctor was satisfied with his growth and nutrition. Since he has not had any major GI issues besides a tummy bug a few weeks ago there was not much to do. Not that Eric would allow much examination anyway. This was another display of his tantruming skills. I honestly wish we could skip this tourture for both him and me but it is policy. There are concerns about his teeth because of his liquid diet and my lack of ability to clean his teeth thouroghly because of his oral sensory issues. They told me to call the dental clinic at the hospital. I call later in the day to find out they have no new patient appointments available right now and their wait list is full. I have to get a referral from the feeding clinic folks to get a chance at getting in there. I got a recommendation from a friend of another practice that offers sedation dentistry and is good with her kids. I will be making a call there. At least I finally got an appointment with the genetics clinic for mid March. For that we are going to start with Andy and proceed from there with me, their dad and the other kids if necessary. I'm just glad I finally got to the right person to get this going. The next feeding clinic appointment is set for Feb. 19th with the behavior psychologist for a feeding session. We are also hoping that someone from the in home provider's organization will be allowed to attend so the feeding part of the plan can be discussed and laid out so it is realistic and works for everyone.

Keeping Busy

Yesterday afternoon Eric's therapists came when he was home from school. No tantrums when he was asked to leave his movie and I turned off the TV! That was a shock. A new therapist came today. She hit it off well with Eric from the start. Eric was asking for tickles right away. He can say it so clear now. It is amazing he picked that up within a week! The down side is that he keeps going with it, constantly asking to be tickled. I think it is time Eric learned a new word. He finally decided to play ball. He can also say ball very clearly. He would say it before he would throw it. The therapist started bouncing Eric on the ball and trying to get him to say bounce. We got an approximation that sounded like ball but they accepted it. He liked it, but he would not do it unless the ball was on the therapist's lap. I tried with the ball on the floor he wiggled away. When he was a baby he would want me to bounce him on my lap all the time or he would cry and not sleep. Everything was going great for an hour. Then the therapist mentioned Eric tolorated the light being on. A few seconds later Eric ran to turn off the light. He was told he had to turn the light back on to continue playing and tickle games. He turned it back on with my help. He was OK with it at first but then the tantrums started. I could tell he had enough at this point. He asked to eat in hopes of them leaving him alone. No such luck kiddo. We are working on having him put his cup down on a coaster on a portalbe cabinet instead of having me stand there and wait for him to get done and take the cup. He did not like the therapist in there with him while he was eating pushing this. That was not a quiet meal. We gave him is squishy frog, let him play on the computer and ended the session.

Eric bouncing on his ball. It is bedtime soon after nap, which results in crazy hair he will not let mom fix!

Eric during his feeding. He is not happy about the counter and the coaster there. He wants mommy to take his cup.

Eric's next session is Thursday. Tomorrow morning he has his appointment at the CHW feeding clinic. Eric has severe feeding adversions stemmed from his autism. The provider is waiting from the notes and results of this appointment so we can modify the plans for food tolorance. The hope is that the feeding clinic and the therapist can work together on this. This is his big appointment with the psychologist, nutritionist, nurse and GI doctor. This always makes me nervous and he can be quite combative since he hates being messed with and it is so long. At least with the in home therapy we should not have to worry about having to stay there on 8 West for 10 days or having to go to Baltimore. While these are not bad things, they are just not feesible for our family right now. I will update on that tomorrow after it is over. Monday is the team meeting with the psychologist in charge of his therapy (aka the lead therapist). Plans for moving forward should be made then. This afternoon is the IFSP meeting for Jon and early intervention. This has me a little concerned. I know there are minor delays, but I am hoping I am not told more. I will update on that later today.