It's official....

So Dr. Blazo said it's official, Elliott has Floating Harbor Syndrome.  She is now trying to help us figure out what is the best way we can help Elliott become a productive member of society as he matures into adulthood.  Right now, just being a kid and giving him experiences will help but he will need additional therapies.
Robbie is not progressing in his speech development and I am worried about him.  He is using sign language but only when he wants to...I don't know how I can encourage him to use it more.  I think I am going to have to go to the school for the deaf and ask for some help.
Sometimes, I feel that I really need someone to support me in all of this. Emotionally and physically but I know that is just too much to ask for right now.  I keep taking it a day at a time and I make sure that I take a deep breath when I start feeling overwhelmed or I have a night where I just curl up and have a good cry.  I need to remind myself that I need to take care of me and then in turn I can take care of my boys better.
Please keep my family in your prayers, we can never have too many!

Getting Frustrated...

I totally understand that patience is a virtue but I have been waiting since October to hear from the genetics test for our son Elliott!  Every time I call, it seems like it's one excuse after another.  I understand that things happen but come on!  The longer we wait for a diagnosis, the further behind my son gets!  There's nothing I can do about and I think that this feeling of helplessness is part of my frustration!  Aye, aye, aye! 

Doctors, doctors, and more doctors....

Today was Elliott's echocardiogram and for the most part Elliott did a superb job! He started to cry when the technician put the ultrasound wand at the bottom of his adams apple. I was able to talk him through some breathing exercises and counting games and they seemed to work. The technician seemed very thorough and stayed a long time looking at his left atrium. She even went to get another technician. I did not get a very good feeling about this. His left atrium looked really large and his left looked small. There was red and blue mixed in on both sides. I know from previous tests, that's not a good sign. But I am going to remain positive. The technician told us that the cardiologist will have the results by next Thursday. I pray everything is alright. I don't know what we will do if they aren't. Next Thursday isn't too long to wait, I will try to keep my mind busy. That should be easy to do since Robbie now has strep and I need to get my AVID program binders ready for certification by May 17th. I am hoping to go back to work on Friday, everything depends on how Robbie is progressing. He needs to start eating and drinking again. He actually had a few spoonfuls of babyfood but now won't drink from his bottle. I think it is because his throat hurts. His fever seems to be down right now. Hopefully, it stays down. I will probably need to go into work on Saturday. I hope that John can take care of the kids. I really need to go in. I will keep you informed as I get informed.

Patience is a virtue in what exactly?

I've been taught that patience is a virtue and for the most part I am an extremely patient person. However, my patience is quickly coming to an end. I waited for over two years...yes that's right two years to see a developmental pediatrician. All he did was review his medical chart, weigh him, took his height, asked him some questions and said "yes, there is a problem." I am referred to a geneticist who in turn tells me that she feels that he has Floating Harbor Syndrome and wants to run a series of tests. I don't have a problem with any of that but what I do have a problem with is that every single test has at least a six month or more waiting list. By the time my husband and I find out exactly what our son has he will be driving!!!! I am just frustrated that the medical community feels that we have all the time in world and that we all are on their time schedule. The longer we wait for these tests, the more behind our son gets with his education! Who were the people that taught those doctors to read, write and do math...TEACHERS! I guarantee that if it was their child they would not be placed on waiting lists...they would have immediate access to care!

Conflicted...

I find myself conflicted lately. I love my boys and would not trade them for anything in the world, but I find myself worrying what type of future is in store for them. I love them with all my heart and will do anything for them, however, as with every other middle class family in America there are financial and time constraints. Will they be able to make a living? Have a family? Children? Will they learn to love each other and always be there for each other? If something was to happen to me would they know that I loved them deeply? It is hard for me to imagine not being their in my children's lives but lately I wonder how long I am going to be able to participate in it. I am in the age bracket of when colon cancer strikes my family. Yes, I do get check ups for that, but it all depends on the doctor. Did he take his time and thoroughly analyze everything? Only he would know but my life rests in his hands. Will my children have to live in fear of this, as well? How do you go about explaining it to them? I feel that much is on my mind and none of it is answerable. Only time will tell, until them I plan on loving them and cherishing every moment with them and hopefully getting some sleep at night (lord knows I could use it).

In the beginning continued...

I am in no way implying that any person with a special needs child "deserves" them or that they did not do something right. What I am saying is that there is nothing in my family tree that would increase our chances of having our children diagnosed with Floating Harbor Syndrome. I understand that there is unexplained phenomenon in our world but I NEVER thought that it would happen to me. I am not looking for a sympathy party nor am I looking for this to be explained. It's happened and now my wonderful husband and I need to embrace it. We LOVE our sons with all of our heart. At times, we are overwhelmed, fearful of what the future may hold for our children, and anxious because we do not know what is going to happen next. I am hoping that this blog will help bring peace of mind to my husband and I. Through this journey we will shall gather strength to support each other and our children, a determination to do what is just and right, and time to enjoy and take pleasure in our family. In our bonds we grow closer and gain a deeper insight into the miracle of life.

In the beginning...

I NEVER thought in a million years that I would have a child with special needs, let alone a child with a genetic disorder. I mean, I did everything I was suppose to; I graduated from high school, went to college, met the love of my life, graduated from college, got married, started my career, and five years later had our first child, Elliott! I never took drugs and drank a lot of alcohol. A glass of wine every couple of months. My husband and I lived a healthy lifestyle