ANSWERS!!!!

I sometimes wonder why I get excited over things? We did get answers while we were down there everyone! Although I have to say that as a mom They are not the answers I wanted to hear. I think that this is going to be one of the hardest blogs that I have written.

For as I prayed and prayed for answers to our questions....I was hoping for answers that would make me feel better....yes it happened at birth....your son is going to be slightly MR (I hate that abbrev.) but he will be ok. He will live a somewhat normal life....blah. blah. blah.

That is not the case.

My dad seemed to write a very good email that I just read that explains things and it would be easier for me just to post at this time. Like he said and I said above....it just hurts to much right now to explain. So here is what we found out.....

We went to Boston so that maybe we could get some
answers. We were successful. However, the answers do not
paint a very good picture. Beth and Cindy have not got to
the point where they can pass on the information to others.
The Doctor did a very thorough review of Noah and his
history including the MRI of his brain. When he completed
this, he apologized for what he was going to have to tell us.
Then he very thoughtfully and carefully explained
everything.
Here is my interpretation of what I remember. When your
brain is developing, it develops in layers. Something
genetically happened at this stage with Noah and as a result
his brain did not successfully accomplish this. Areas of his
brain that were affected were those that control his motor
skills and his recall. The best example I can give of his
recall is that he has a tendency to stick his fingers in his
mouth and then bite them. He does not remember that he
has done this countless times before and that it hurts. That
is why he continues to do this. He has developed to about
the stage of a 3 month old and that is as far as he will go. His life expectancy is anywhere from today up to 10 years. During his life, we will have some hard decisions to make in the future and we need to start preparing for them now. As his condition deteriorates, we will need to decide just how much medical intervention we want to keep him alive based on his quality of life. The seizures and the sicknesses will all take their toll. As he grows, some orthopedic care will be required and this will include some surgeries. The Doctor informed us that there will be many issues coming up in the future and we will need the money we made with the fundraiser and more to cover those expenses. He felt that what the Maine Doctors were doing is working and he suggested we continue to let them care for Noah until the specialties at the Children’s Hospital of Boston(specifically their very good Epileptic care professionals) are needed. He wants us to save the money for future needs. We had already been informed that we would need to pay for
this visit because MaineCare would not and we were prepared to do that with the generosity of so many of you. However, when we proceeded to checkout the lady informed us that MaineCare would not pay because they failed to get a referral from the Doctor and they could not bill us. We think the Doctor must have told them not to charge us after he got done with us. He seemed like a very good Doctor with a very caring heart so we feel that this is a strong possibility. He did say that he would be recommending another MRI to evaluate his current status and there will be some other testing he will be recommending but this will not change his diagnosis. We have a long hard road in front of us with some very tough decisions that will need to be made.
Meanwhile this little guy seems to have touched the hearts of so many of you in the short time he has been with us. He just seems to bring out the best in everyone that sees him. People fall in love with him at first sight. Thank you for all your support and prayers from Beth(Mommy), Cindy(Grammy), Charlie(Grandpa) and of course Noah.

One thing my dad forgot to say is that the siezures are expected to get worse. He could have a mix of different kinds and we will have to control those. He doesnt sleep well at night because he doesnt have the layers to control him to go into the different sleep cycles that we all go through. So he told me to try some meleconin tablets at night up to 3mgs and see if this helps. We started last night with a half of 3mg tablet. We will see if it works.

So that in a nutshell is what we found out. It is extremely hard to hear and think about right now. But I am doing ok. Holding myself together as best as I can and just trying to stay as positive as I can. We have a lot of support out there now and that helps. Please keep him in your prayers.

On to good news!!!!! For two weeks at least Noah has been really struggling to roll over on the floor by himself. He would get very aggravated if he couldnt. Well Today he has done it at least 6 times. Three times for the Physical Therapist..... its exciting. Maybe he finally has got it. It was well needed today....and made my day. Made my moms day and even my dads. And he has been full of smiles. Its like he knows Mommy needs a little more happy faces today to get through. I love him so much.

Well thats enough for today.....

We love you all.