The day after......

.........I am now ending my facebook blogging days and will be just using this blog which I will be setting to private. I will be using my blog not as a way to alert people of everything happening in our lives, but as a way to journal my thoughts in order to keep a happy face and my sanity.

The day after....this is the day after my world stopped turning...momentarily. As a mother of three healthy, beautiful boys, I have daily thanked God for them being healthy. That bubble I was living in, suddenly popped.

My husband has been telling me over and over that we need to take Brady to a dermatologist for his eczema, not just to the pediatrician. I have thought he was over reacting as we get the same response from everyone on the eczema, treat it with ointment and he will eventually outgrow it. Thursday night I was awakened during the night with a thought, that we must take him to the dermatologist...enough was enough, something more needed to be done.

Now I have to back myself up and remember that we used a pediatrician at Bham Pediatrics for the first two years of the twins lives.............for the time period that they go to the doctor the most, as from 2 forward they only go once a year. At the two year checkup, I switched doctors because I was pregnant with our third child and wanted a doctor that was closer to our home. Dr Sester stated at the boys appointment, that she noticed the spots (which I thought were birthmarks) on Brady needed to be watched to see if the multiplied or grew in size...that she was sure the other pediatrician had mentioned a genetic disease to us....to which I responded NO he never mentioned such a thing. She explained that drs will only see the children once a year from now on and that we parents are the best monitors for such things. No other thought was given to this.

Kimberly took Brady to the dermatologist yesterday morning at 9:50 with a list of questions I had regarding the eczema and the "spots". At 10:39, I got a call from Kimberly that the doctor wanted to talk to me. At this point, I am expecting an explanation of what the spots were and what treatment should be given. At this point, the doctor starts explaining to me his concern that Brady could have Neurofibromatosis. As the spots are called cafe' au lait spots and that he noticed a few other spots on his leg, known as JXG which is also a sympton of Neurofibromatosis. He wanted to do a biopsy of the JXG to send off to obtain confirmation of Neurofibromatosis. My mind raced, what did he just say, what does this mean, what about my baby Brady????? I immediately asked him to wait about 15 minutes in order to allow me to get there to the office before doing the biopsy...to which he agreed. I then fell apart.

I don't think I driven so fast and wreckless since before I was pregnant....with the twins....I kept thinking hold it together, it can't be that bad, you have to be the strong one............how can something be wrong with one of our kids? Why us? Then no, you can do this, God has never left you and He will not send you anything you cannot handle................He has gotten you so far and never given me more than I can handle. Remember, you are stronger than this...................just go in and find out what MUST be done. All I could think of, was Angie Smith, remember "Our God is the same God today, as He was yesterday".

After holding my son, while the dr injected numbing fluid and continuing to hold him perfectly still in order to do the biopsy, we discussed the issue at hand. Brady has more than 6 cafe au lait spots.....this is a symptom of Neurofibromatosis. He has a couple of JXGs, which are another symptom of Neurofibromatosis. Brady's language delay, can be a direct result of this. The biopsy will give us an answer and guide us to the next step. The next step will be to see a geneticist, the only one in the state of Alabama that deals with this disease. The blessing is, he is located here in Birmingham at UAB. Great---he's here local and we can have access to him easily if there is an emergency. Problem---with him being the only one, it is hard to get in to see him. So the dermatologist and pediatrician will make referrals once the biopsy is in... and we will wait. So, what exactly is Neurofibromatosis and what does this mean to Brady's life?

I know dr's hate hearing a mother ask, okay give it to me, what's the best case and the worst case we are talking about here.....being in the insurance biz, this could really open them up to a lawsuit. So with hesitation the dr explains, Neurofibromatosis is a genetic disease, but because Tony and I neither one have ANY symptoms, this appears to be spontaneous. (Which I have discovered happens 30-50% of the time!) Which is good, so that Cooper and Hayden should not have it. Neurofibromatosis is a chromosomal mutation that causes tumors to grow throughout the body, inside and out. Every case is a little different as some people have no symptoms and others have all symptoms. It can affect the bones, nerves, eyesight, hearing, causes learning disabilities, chronic pain, and can lead to cancer. We do not know what lies in store............we do feel that Brady has it, as another symptom is a larger head, and they tend to have a small frame. So far, Brady fits 3 of the symptoms. I don't know what to expect or what lies ahead.......................just taking it one day at a time and research as much as I can..................I have found a great website, www.ctf.org, Children's Tumor Foundation.

I just pray for now, that when we get the results, we can get into the geneticist as quickly as possible.