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 Jonah's 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 the steroids are also causing him to want to always eat. 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."
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8 comments:
Jessica, oh my heart breaks for your pain....this emotion of seeing and comparing rips us apart; I did it for so long. Maybe now and again after a hard, long day I still 'imagine' 'wonder' what Clay would be like as a normal adult 24 year old man....did I just say man?! It all takes so much time.....not what any one of us wants to hear; not what any one of us wants to bear....but time is all that heals broken hearts...it takes time to stitch pieces back together...sometimes, (often) the pieces are torn wide apart again and the bleeding starts all over...everywhere...there is a broken, bleeding heart. I don't know what to say. I know that you girls are all so fresh on your journeys...you are still in the midst of the hurt and the pain and the memories and the histories and the medical visits and the hospital waits and the wishing and the wanting and the if onlys..........yep, I am the old mom who can now look back and tell you things, share things that maybe help, maybe not help because I've left lots of those things behind me.....the passage of time that you girls have not yet journeyed....my heart breaks with yours and I wish I could make it all better. You are all strong women.....from what I can tell, women of great faith and great substenance, of great patience and more than anything of GREAT LOVE! Hold on Darling Mommies, hold on.
big cyber hugs. big big cyber hugs.
I have the "he's not quite normal" experience a lot. Most 4 yr olds don't have OT and SLP just to get them to EAT. Most of them sleep through the night or if they wake up with a bad dream, they can be reasoned with. Most 4 yr olds don't get so angry that they have to take anti-psychotic drugs just to take the edge off the anger. My son is also quite delayed in fine motor but the school doesn't see a problem.
Yeah, I get it. Hang in there Mama Bear.
aww man.. I hate that feeling.. I hate it hate it hate it.. HUGE hugs momma...
I am sorry it was not 'fun'. I hope you are having a much better day today!
Thanks everbody.
Yes Erin I am having a good day today. I just needed to have a good cry, vent/pitty party day. Now my battery is recharged and Im ready to take on the weekend. Oh I am so happy to belong to this blog! I think when it starts warming up we (who ever could make it) should all do lunch at a park with all of our children. Doesn't that sound like fun?
I think we have all been there! And we just started at the not so FUN clinic too. It's highly over-rated as fun!! LOL!! Oh the things we have to do, huh?
My daughters are 21 and 9 and my soon to be daughter is 9 will be 10 in June when she comes home. I get that look a lot. It used to bother me but, once when in a store and we had a carer with us some kids were staring at my girls and the carer got defensive. I felt very uncomfortable and since then I try to say something to the kids who stare about God making them special and . Yet it still is uncomfortable because I'd love for my 21 year old trapped in a body that doesn't work to be able to go to parties and dances, etc. But, I love her just like you love your son. It gets easier with time.
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