I think a lot of my friends and even family may be surprised to learn that I have a child with a "special needs". My son, Finnan, has De Morsier's Syndrome. A.K.A: Septo-Optic Dysplasia, Optic Nerve Hypoplasia, Agenesis of the Corpus Callosum, Absence of the Septum Pellucidum. It hasn't been something we've readily shared with people. We are not ashamed. We are just trying to figure it all out.
If you met Finnan you might not notice his differences. You wouldn't notice his differences unless you lived with him or saw him on a daily basis. While I'm on this subject, for future reference, when someone shares with you that their child or family member has some sort of rare syndrome or disease, please don't say "I just don't see it", "You'd never know!", "Really? How do you know/find that out?". As if the parent is making up some story to spare themselves embarrassment should said child do something others consider strange. It really is rude and so very annoying. Its not as if we wish for our children to be different.
Finnan is not sick. He has some abnormalities, but is going to be around a very long time.
I'm starting this blog for somewhat selfish reasons- cathartic release. I'd also like to take the opportunity to tell all of my friends and family : If I don't answer when you call, or if it takes me a few days to get back to you, hopefully after reading this first entry you'll understand why. I'd also like to meet other parents of children diagnosed with SOD/ONH/DMS/ACC/ASP.
Finnan was diagnosed 2 years ago at the age of 2. However, we still don't have enough information or clarity on the diagnosis. If you asked me what was "wrong" with Finnan, I'd probably say "He's missing the middle part of his brain." For some reason this seems to be the only answer that people can understand. Hell, right now its the only one that makes total and complete sense to me. I can get technical about it and may in the future, so bare with me.
Here are a few quick notes as to where we stand with Finnan's diagnosis:
1.) We know he's missing the middle part of the brain.
2.) This part of the brain guides the Optic Nerves (these guide visual images to your brain).
3.) Finnan's Optic Nerves, specifically his Right, are smaller than normal. Its as if he is always looking through a straw.
4.) He has endocrine issues: growth hormone, hypothyroidism, possible diabetes insipidus.
5.) He was recently diagnosed with an Autism Spectrum Disorder.
6.) Finnan is always on an adventure. His enthusiasm about daily goings on is contagious.
Now that you're caught up on the basics, let me tell you about a typical day in the life of Finnan. Finnan wakes with the energy of a humming bird. He flits around the house gathering his dinosaurs from volcanoes (shoes) or jungles (the grass that hasn't been cut in a few days). He drinks a bottle of water and asks for bacon and eggs. He packs his dinosaurs in his special back pack, gets dressed, refuses to brush his teeth, puts on his back pack and waits. He waits for everyone else to get geared up to leave. Please don't think me an awful parent, but Finnan cannot stand for his head to be touched. He screams and kicks during bath time when his hair is being washed. He is terrified of anything other than his fingers or a feeding utensil entering his mouth. This unfortunately includes a toothbrush. We're working on this and have made much improvement, although it is still a daily struggle.
A lot of our days are spent at Children's Hospital going back and forth to doctors offices. Or waiting to be seen. We are at Children's at least 3 times a week. Its about 45 minutes from our house, so this takes up a lot of our day.
Who we are seeing at Children's Hospital:
A Neurosurgeon
A Neurologist
An Endocrinologist
A Psychologist
A Urologist
A Neuro Opthamologist
A Gastroenterologist
A Geneticist
A Cardiologist
A Dermatologist
This list will grow as Finnan gets older.
When we are at Children's we have to visit the Fish Tank in the outpatient lobby before we go to our appointment and after our appointment. During the appointment, all Finnan talks about is the Fish Tank. He repeats "can we go see the fish?" 30 times before our appointment is finished. 30 isn't just a number I came up with or an exaggeration, it is precise. Its called OCD/Palilalia. He repeats a lot of questions, answers and phrases. He's perseverate in a lot of things. We break for lunch where Finnan must have a Turkey sandwich and a bottle of water. This is his standard lunch. Pretty much all he'll eat for lunch. Again, we're working on this. We're actually seeing the Feeding Team to help with this as well as his gag reflex. After his afternoon snack of "Pirates Booties" (Tings) and bottle of water he will eat either homemade chicken nuggets or "pizza with Red Polka Dots" for dinner.
Being that its almost 2 a.m., I think I need to stop blogging and get some shut eye. If there is time tomorrow, I'll fill you in on the diet Finnan started. It was suggested by the most amazing Mom who's son is Finnan's social skills partner. WAIT TIL YOU HEAR ABOUT THIS!
Goodnight!
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