Events of Today

It's already been a day and it's only 1:00pm. We got up early this morning for Jonah's apt. It was a clinic up at PCMC that will focus on Jonahs eating and over all weight. We have been waiting to go to this clinic for over 4 months. It is called the FUN clinic, but to my surprise it wasn't fun at all. (Follow-Up Nutrition) I imagined a big room with lots of toys and very spacious. Maybe a few tables so that the parents could sit and chat with the doctors...Nope, all wrong. When we arrived I was given a stack of papers to fill out (really? All of his procedures and hospitalization have been done here why can't they do some research?) I had about five minutes before they called me back to the room. I told the RNA I was not finished and she said to just finish it up in the room. The room was about the width of a pantry, but long. they're were no toys. Just a regular examination table and a sink. Very boring! the social worker came in first and chatted about our families well being through all of the events this past year and asked lots of questions about Jonah's medical history (a story that I am so sick of retelling) while she was talking to me another woman came in and was later introduced to me as the nutritionist. The nutritionist was there for the remaining of the apt. She had great knowledge of what would work best for Jonah, how many calories he needed and wrote up a meal plan. The doctor assisted her with this and I feel so much better about the whole thing. The concern is that Jonah is overweight for his height. He is 26in and weighing 19.4 lbs His BMI is 97% this is causing the gross motor delays. He is short due to the long period of time on steroids. Today I learned he is also overweight due to the steroids. The Dr. informed me that the steroids are causing a whopping 80% of the problems...hence, he needs the steroids to breath. I'm tired and worn down by all of this, half the time I can't even register it. We will go back to the not so fun FUN clinic in April to see where we are.
After the Not so fun, FUN Clinic Jonah and I went down the hall to register him for some labs. We went in sat down waiting for his name to be called. A little boy and his mom walked in and sat across from us, we got to talking and she told me her little guy is also 15 months. He was walking and talking, just being a toddler. Once again it was thrown in my face that my baby, my son, my Jonah was not "normal." I can't even explain that feeling. it's like being the last person picked on the team, feeling. It makes my heart just ache. I just want to yell It's not his fault. I know the other mom felt bad for Jonah which almost makes the situation more uncomfortable. Jonah's name was finally called and we left the waiting room.
writing this I have had to take a couple moments just to cry. I have become such an emotional person and quite the "mama bear." I don't mean to make those of you with healthy children feel bad, rather celebrate how lucky you are. I am so grateful for every ones support and love. I do recognize that this is something that Isaac and I are going to have to live with for a while, but it is hard to control mama bear feelings, so please just understand.