last night..

As I was laying in bed I just kept thinking about how blessed we are to have three great healthy kids. I was so thankful to God for His guidance in my baby's life and how the normal body is made up of so many chromosome and cells and such. The detail God puts into each and everyone of us to help us live a life that He has called us to. Then I am told of C's mutation to his 5th chromosome and I started to cry thinking "God must have spent a little more time on you" Its must take a lil extra time to purposely change something that most everyone else in this world has made one way.

C as your mom I know you are speacial, not just because your my son but beacuse I knew from the moment God laid His hands on you that He has great wonderful things in store for you. Life is not by chance it is all part of His great and wonderful plan.

I dont begin to know how much pain you have already faced in such a short time or what you have to do just to keep up. But what I do know is you do it and you have tought me so much of what life is about..You have no clue there is anything "wrong" with you, you just know life doesnt sit around and wait for us to catch up. You my son are a amazing person and I LOVE YOU!

Dr. Appt.

Do you ever feel overwhelmed with information that you feel overstimulated? That is how I felt today after leaving C's nero appt. His nero retired so a new one took over his case he has been a nero for 25 years and he was very knowledgeable,kind and a lil geeky.

He came into the room and before I even sat down he told me I know what is going on..This Dr. then said with 100% that it is not CP/two other Dr. have said yes he does,but he does have dystonia and he believes its the L Dopa version, and then he said he has hyperexplexia. Hpx is a rare genetic disorder that both parents have to be a carrier of. It was another big word that scared me. "but to say it in a normal persons terms its not scary"..Its a mutation of 5 genes that doesn't get worse with time or change. The worst part from what I have read is SIDs is common but he is past that age.

The L Dopa I kinda already knew I don't like the idea of him having to take drugs for the rest of his life and he still might not have to, God has done amazing thing and will continue to amaze people by this lil guys life.

On my way home from the doc my husband was talking to me and telling me how this doesn't change our son. We know who he is and what he is capable of. But what it did do is tell us for sure we are done having kids if we are both carriers and it was only passed down to one of our three kids Praise God..

C's 1 year old pictures

Sleep is a wonderful thing and somedays I miss it so much...BUT not last night C went to bed at 9 and slept till 7 I feel refreshed and ready to face this beautiful sunny day in Az. Have a wonderful Monday people.

Uggggg

Today I was reminded to make C's hearing test and MRI scheduled. In the paper work it talked about his thumb in palm and if he hasn't outgrown it by 7 months further test will need to be done. Well he is 12 months and he still does it most all the time especially when tired or stressed,stimulated or anything like that..I always know when he is trying to catch his balance or focus cause he does it bad at those times.
"not the best pics..lol but just to show how "TIP" has never left"

Then I went to check the mail and got my very first "Raising spacial children" magazine. I am guessing it was sent by UCP. Now don't get me wrong I am very aware that he is doing great I mean amazing...but for me at that moment in my yard reading the title of that magazine was just one of those moments.

My husband and I myself have always wondered about his hearing to softer noises he jumps at loud ones but zones out most softer ones.We just choose to wait till he was a lil older to put him under anastasia again.

Me and lil man took a trip home to Michigan

I had a great chance to fly home to Michigan with only my baby...It was such a great time for C to met aunts, uncles,cousins etc.. He did great on the flight to Mi. and great while there. He was the center of attention the whole time.

On the flight home he had a fever and was on lil to no sleep which is hard for any 12 month old and for C it was no good...The flight attendant was walking the isle with him.God is so good as C went into one of his episodes and we were still on the ground..I was thinking OMG.... This lady across the isle leans over and starts talking to me about C and I shared brifly his history and guess what she was a peds Pt..thank You Jesus for this..She was well informed on his condition and could see his treamers with his stiffness and did some massages and streaches but more then that it was so nice to have someone that just understood, amougst the many glares from the others passengers.