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Introduction.....and hope.
October 2006, new hope
Date: 10/28/2006 10:33:39 PM ( 18 y ) ... viewed 2024 times So, without giving to much info out that is to personal here we go....my son is developmentally delayed, and he has neurological issues. I'll go from the beginning and end up where we're currently at. This blog is an online journal to remind my husband and myself where we are at, where we've been, what is working, what isn't, and to ask for assistance and ideas. Please note that we love our son very much and are parents to four children of varying ages, if at any time it seems like we've overlooked...well, we have, we're really busy and doing our best. That's all we can ask.
He is born, and all is normal. One week later he has a high heart rate, no blueness and no shutting down--it's been caught in time. Without surgery but with meds the condition is under control (supraventiculartachicardia) and I'm sure I"ve spelled it wrong. A year goes by and again, all is well, he's normal and fine, and walking all over town! Three years old and my son isn't talking much, he is in special ed preschool and there are concerns. He 'wiggles' uncontrolably and seems to be losing weight. His coordination is poor and he falls all the time. He condition is called 'childhood chorea' and I would come to find out that really that means he has muscles spasms with the absence of weakness--he also cannot potty train, and now I'm told I'm a 'bad' parent (lack of training). I am taken into the hospital hallway one day as they are removing and then adding (new location) stitches to my son, the docs are concerned not about his condition but rather if he is abused. I show them that one happened at my home, but the other at school and that there is no abuse. Thankfully there isn't and we don't have to manage that again.
We move to remote area with limited medical facilities and the doctors are baffled. Until one day when I run across an emergency room nurse practitioner. He says he's seen this before, and this is unusual--childhood chorea 'burns' itself out eventually. More doctors, more tests, lots of meds. We finally are 'potty trained' and he is seven. Five years go by.
We move to another area (we are a military family) and this one has a medical center with a neurologist who sees us very quickly. He actually does a brain scan, and wouldn't you know it (sarcasm) his brain is fine, small, but fine. No CP there. We are sent to genetics, where all tests come back fine also. We had hoped that Angelmans Syndrome would be his, any info to lead us to help would be welcome at this point. But no, he is VERY verbal since age 5--note: all the kids after him would be VERY verbal at 8mos+ because of the work we do at home ( big green tree with roots in the ground--you get the picture). We are told that yes, there are issues, but that they are not genetic and what can be done is limited because he doesn't track or fit in neatly. He is not autistic, retarded, or any other simpler answer.
Our answer is that God is in charge. Works great for me, and my family and we are a faith based family, not because of this but it helps to know that God has a plan for us individually and as a family.
Interesting point: as we move across country he starts to 'wiggle' less, and focus more. Enough so that we notice and decide to take him off ALL meds to see if this is a side effect or not. We see the doctors here, but since they didn't know us before, they just don't get the miracle. We still have less movement, but more other stuff. I wish I had tracked our diet from the west coast to the southern region.
Enter the teenage years. Arghhhhh....it's rough enough, but this will be brutal. My teenage son has one older brother, so we know what to sort of expect. But what we have is a teen who has the emotions of a 3 year old, the education of a 6 year old, the body of a 12 year old, and random moments of just oddness. He really doesn't 'get' what's okay and not. No social norms or limitations which make it tough to develop age appropriate relationships. I sit next to him during youth group and our church makes exceptions for him at times. They, as a whole, have been completely wonderful.
His two year old brother can make him crazy, and pushes his buttons rather well. He sleeps poorly, and the other night had to move chairs to the right locations at midnight so he could sleep. That would be his OCD shining through. If it's sunny out then it must be warm. And he is learning that love is more important than anything else. That and brushing your teeth. New things scare him, and he is learning to spell. He is not a reader and might not ever be, yet to know.
And that's where we're at. I was on the Humaworm forum, love it there for personal reasons, and put his story out there. We had a reply, and based on that we'll be trying and researching some new stuff this week and going forward (thank you White Tiger). It is important that we document, and this is the best way to do it. So now you know, and so do I....what a journey it has been. There's so much more, but that would take all night and this is about going forward, not so much looking back.
Prayerfully we will find some peace for my son, some balance so that every day isn't as big a struggle.
As I sign off he is almost 14, sleeping soundly, and I am hopeful that tomorrow will be a great day.
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