Thanks for sharing. That sounds pretty hard. I have three boys and they all have a special need of some sort. Logan Joeseph is 3 and we are currently in the process of getting him tested for various tyopes of autism. We believe he is somewhere on the spectrum but we are waiting for his appointment with the behavioural specialists. We just recently realized there was a problem. Kaidin Marshal is my little man he is 2 and e found out there was a problem when my wife went in for her 31 week ultrasound. The long bones in his arms and legs were measuring too short so they sent us to a regional obstetric to do 3 and 4d ultrasounds. Thats when the doctors told us they were 90% sure that it was achondroplasia which is the most common type of dwarfism. So they did an amnio to confirm and it came back negative. So they then started to suspect that ot was a type called thanotoforicdisplasia with is fatal in all cases. the most anyone has survived is 3months on life support so they tested for that. In the time we waited for the test to come back we had planned a funeral for after he was born. We had the funeral home on stand by waiting for our call to pick up the body. It was a rough few weeks. But about 2 weeks before the due date the test came back negative and then the genetisist said that it was probably brittle bone or OI. So we had a c-section to make sure no pressure was put on the bones. They cut my wife hip to hip to get him out. We just recently got hi diagnosed with CHH which is a rare type of dwarfism inherited by your parents. So we had to be carries or the recesive gene for it. He has an immune problem he can't fight of herpes 1 or 2 and shingles or mumps so he hasn't had any live virus vaccines. It has been a ruff go. Our youngest son Jacobi who is 6 months and just about the same size as his 2 yr old brother has allergies to milk, wheat, eggs, and just about everything else you can think to put in food. so we are battling horrible skin rashes and itching. So I know where you are comming from. This is why I made this group so people like you and I can find common ground and form a good support group for parents who don't think there is anyone out there that will understand the hurt some of theses types of special needs can cause.

I think this is a great group idea. After joining and reading both of your stories I feel like my daughter's issues are nothing compared to what you all have gone through and continue to go through. Still, it's something that has shaped our lives and is largely responsible for my decision to stay home. What follows is an excerpt from a blog post I made about our experiences.

"Umm....We'll have a doctor contact you in a moment"

That's what we heard from the nursery at the hospital at 3:30 AM the morning after Jane was born. My daughter was to have been brought in at 3:00 AM to try her first real feeding after being born earlier in the evening. When we called 30 minutes after she wasn't brought in, already fearing for the worst, it was confirmed... something was wrong with my little girl.

When Jane was first born she had what we assumed to be a lot of junk still in her breathing passages. She wheezed and appeared to be struggling for her breath. They cleaned her up and suctioned her nose/throat a couple of times. My mother-in-law is really the one who kept telling them that something just didn't sound right. The nurses told us that they'd do more suctioning on her when they got her to the nursery, but that everything is fine. "Get some rest" they said, "and we'll bring her in at 3:00".

Well, at 3:00 she was on another floor of the hospital having a series of X-Rays because the on call doctor believed that she must have had collapsed lungs. Thank god she didn't. Unfortunately- they had no idea what was wrong. The day after our release from the hospital we had Jane at a pediatric ear, nose, throat specialist (that's an Otolaryngologist) who stuck a series of lights and cameras down her throat and nose and diagnosed a severe case of Laryngomalacia.

Turns out Jane has the most severe case of the disorder her peditrician has ever seen, and the second most severe her otolaryngologist had ever seen (the unfortunate individual with the most severe case he had ever seen now has a tracheotomy). Unlike most of us, her upper chest does not raise up when she inhales, instead it actually sinks in at the end of her respiration. Even today her chest is still concave... no one can tell us if this is permanant or not.

Jane had a surgery a little before her three month birthday (12/15, merry Christmas!) in an attempt to loosen the soft tissue in her throat to release her epiglottis from the symptomatic "horseshoe shape" caused by the disorder. We should have been released from the hospital the morning after her surgery after spending a night in the pediatric ward at the hospital for simple monitoring because of her age.

Instead we spent four or five days in the Pediatric Intensive Care Unit because the surgery was a failure and actually made things worse. We learned a couple of things in the PICU, the main one being that you can't sleep in PICU because there is a chance that they may need to rush in and they don't need your sleeping ass in the way- there are literally NO BEDS for parents in PICU. This is also how I know that it is fucking near impossible to function for five days with almost no sleep. Towards the end of our stay Sheree and I would rotate shifts coming home to sleep for five hours at a time. It was around this time, tears in my eyes watching this little thing lay there with an IV in her ankle and an oxygen monitor on her other foot, that I knew that there was no way I was going to ever let a stranger watch my child. It's no coincidence that three weeks later I started my new "career" as a stay at home dad.

Jane's second surgery was on her four month birthday, and after our other experience we were naturally apprehensive. Instead of the knives that were used to make a couple of cuts in the first surgery the otolaryngologist would be using a laser to literally burn away all of the soft tissue causing her issues. The surgery part went just fine and we were released the following day after staying in the regular pediatric ward (where they DO have beds for parents). We did have some issues with pain management with this one- I had always assumed that lasers were painfree for some dumb reason, but it turns out that when your throat looks literally like a burnt marshmallow it really doesn't feel all that good.

For anyone familiar with Jane today, you know what she sounds like after this final surgery over 17 months ago. She's still a noisy breather. They keep telling us that she'll grow out of that by the time she hits her two year birthday. They also say her voice box, while weak on one side, is not paralyzed and she should develop normal speech. I believe this is true. She also remains in the 50th percentile at all of her doctor visits, is rarely sick, and really seems to find joy in life. I'm learning as much if not more from her than she is me- I'm definitely not worthy to be her dad, but am going to do the best job I can.

One time, last December, a woman laughingly told me that Jane sounds like Darth Vader. I don't think she'll say that again

I have been fortunate to have a son with autism. He is high functioning and we are trying to include him in more classroom activities. He is now 12 years old. When noticed something was different at about 18 mn old when he lost all of the 20 or so words he said. He only would say D. His word for Disney. It has been a long battle for him and us to get him into the right programs and maintain his IEP with the school district. So far we have had the right teachers who cared about him and he is doing great with his education and social skills. My prayers go out for you guys and the battle with your childrens education and medical issues.
Marty

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