Now that's a surprise

     About a month ago Grayden came down with the virus croup.  He was very sick and while he was sick he started chewing on his tongue.  I remember my husband saying to me, " What is that he's doing with his tongue?"  Thinking nothing about it I replied and said he just found his tongue. Our little Grayden is globally developmentally delayed which means he is developmentally delayed in all aspects of development.  So, around our house we get super excited about new things Grayden can do and I was so happy he was doing something new by discovering his tongue.
      A couple weeks later I was mentioning to Graydens developmental teacher, physical therapist and occupational therapist that Grayden stopped babbling and has now discovered his tongue by chewing on it.  They also were pleased.  I also mentioned to that he has regressed and was not using his hands and transferring toys like he used to.  He has been doing so well with sitting and head control they said that sometimes kids regress in areas when you focus on one area too much.  
     Then a week later  while I was holding him his head would just drop forward and his eyes would roll back into his head for a second or two then he would pick his head up again. This would continue a few times then stop. I just figured because of Graydens low muscle tone he was getting tired of holding his head up.  As time went on this was happening more frequently and I was getting concerned.  At his next therapy appointment I asked his p.t. what she thought about his head dropping.   She stated that this behavior sounds like he is having seizures.  
       He was in fact having seizures.    We knew he might have seizures but it still doesn't make it any easier to see your baby gradually lose all his milestones.  This type of seizure he is having is called an infantile spasm.   This type doesn't look like the classic scary grandmal seizure but it is in fact very scary and attacks the brain tremendously.  They come in clusters and don't typically look like anything.  This type goes undetected for a long time and parents don't usually find out until their baby starts regressing developmentally.  In our case, Grayden has regressed a lot and might not ever meet these milestones again.  
     My heart is broken because I want to fix my Grayden and I can't fix him.  I so wish I could take his place.  I am worried for his future and wonder if he will ever use his hands again.  His doctor said only sometimes these babies get back to how they once were.  I miss his little laughs and smiles he gives us all everyday. Right now he's not doing this much and hardly making eye contact.  Every time I see him seizing I wish I could magically take them away but I can't and feel his little brain cells are depleting by the millisecond.   I wonder if I had only asked his doctor what he thought about Grayden chewing on his tongue, then we wouldn't be where we are today.  And his seizures would be under control.  And he wouldn't have regressed as much as he did.   But that's not the case.
    Here we are back at the hospital again tonight.  Grayden is being watched as he has been sleeping constantly for the past week and is possibly dehydrated.  As I sit here watching my sweet baby boy sleep I pray that Graydens seizures would disappear and we can go back home to our family.  We miss them.
   

I Knew This Day Was Coming

Sunday, October 6, 2013

This morning my family and I went to church, and like usual we took the kiddos to Sunday school and Grayden into the nursery.  He typically sleeps in his stroller the entire time, but today was different.  When we picked him up one of the women in the nursery was rocking and holding him.  We both exchanged a few words then she asked us if Grayden was seeing a doctor. That was pretty shocking to me. I knew this day was coming but I sure didn't expect it to be here so soon.

My heart hurts today.  With all the blessings, lessons, humility, and joy God has shown me through Grayden, 

I still have moments where I am fearful of his future.  Please pray today for our family, that we can focus on the moments and memories shared with each other and not what Grayden can and cannot do and mostly for Graydens healing.

But then again, when I see this beautiful human being smiling at me, all my cares just fall off my shoulders!  

Appointment with the Geneticist

August 8, 2013

Last week we went to visit Grayden's Geneticist Doctor for the first time.  We came there very hopeful to have a lot of our questions answered that day.  This clinic is for kids that have all different types of chromosomal abnormalities like fragile X, chromosomal deletions, translocations, duplications and down syndrome.  The waiting room was filled with so many kids and parents that have a child with special needs.  As we sat there in apprehension, it was actually a good feeling to be in the same room with other parents who have a similar journey as us and that we are not alone.  

The first part of the appointment was filled with tons and tons of questions from my pregnancy background, our immediate family background and our health history.  Then Grayden was evaulated by the doctors assistant from head to toe, checking for distinct characteristics of a child that has a chromosomal abnormality like extra long fingers, flat bridged nose, webbed feet, extra fingers, curved feet, and other things that I don't know of.  His muscle stregnth, cognition, head control, and tracking were also evaulated.  The assistant wrote down all this information and we then waited for the Doctor to come in. 

 Dr. Byrd began by explaining how the translocation and deletion happened.  The chromomsomes are formed at the very beginning of fertilization where the sperm and egg meet.  When this happened a piece of number 2 went missing.  She informed us that if there was only the translocation, 90% of the time, a person will be normal and functioniong but since he has a small deletion on his 2nd chromosmome this can be a cause of developmental problems.   There are several genes involved that he is missing from his deletion.  One of which is where he could have severe epilepsy now or later in life.  The others are still being studied.  Because of the rarity of his deletion they cannot say how Grayden's life will be in his future.  If he is in fact wanting children the odds are against him.  Because of his genetic makeup his children have a huge chance of having severe mental retardation.  She did say however  that there is no doubt in her mind that he will walk one day. We were so happy to hear that!
Overall, we didn't get all the questions answered we were hoping to hear. But,
with that being said, Grayden will show us the way of how everything is destined to come about.  It will be Grayden's Way.

Welcome to Holland

A friend of mine shared this poem with me and I thought I would share as well.

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Our fight to find answers for our little baby brother Grayden

Well... here we are.  The very first picture taken with our sweet, sweet, baby brother Grayden.    Oh how he has been such a blessing and true gift to our family.    I cannot even believe how quickly these eight months have flown by.  Grayden has touched our family's hearts, given us so much joy in so many ways and has taught us so much in this short time.  Never in a million years would I have even thought our journey would go in this direction or the news we received would be this.  So, with that being said I have decided to start this blog to educate everyone on Grayden's diagnosis as it is a very hard subject to speak of now.  I have been relentless on doing this, so please bear with me as I am not the best writer.

From the beginning I knew in my heart that something was just not right with Grayden.  I refused to be in denial about what I saw, and from the experience of having Gavin I already knew that early intervention is so beneficial.  I began questioning his pediatrician from when he was a month old.  It wasn't until he was two months that he was convinced as well.  Since then he has seen countless specialists trying to figure out a reason for all of his symptoms and his global developmental delay.  As of today Grayden has physical therapy twice a week, occupational therapy weekly and the regional center does therapy with him at home one day a week as well.

We received the news last week from his neurologist over the phone.  He told us that he is going to refer us to a genetic specialist at San Diego Childrens hospital as Grayden's chromosome test came back abnormal and he then "wished me luck!"  My heart sank to the floor, I knew from that moment on our journey had just begun.

Grayden has a translocation of the #2 and #3 chromosome and a micro-deletion in chromosome #2 part q24.3 and the size is 1.6mb. 
His result in medical terms: 46, XY, t (2,3) (q24.3;q25.3).
In laymens terms: 
Chromosomes are the structures in each of the body’s cells that carry the genetic
information that tells the body how to develop and function. They come in pairs, one from
each parent, and are numbered 1 to 22 approximately from largest to smallest. Each
chromosome has a short (p) arm and a long (q) arm.  Grayden is missing a piece of the q arm.  A translocation is where chromosomes move.  In his case 2 and 3 switched places.  His sequence goes like this:  1,3,2, and so on.  A 2q24.3 deletion is a rare genetic condition in which a small piece is missing from one of the body’s 46 chromosomes. The missing material includes genes which are important for normal development. Their absence is believed to cause the major features of a 2q24.3
deletion. This deletion is probably a cause from the translocation of 2 and 3.  Most likely Grayden's sequence is only his, and not from Jackie or I.  But, in some circumstances one of us might have the same genetic sequence.  If this is the case, Jackie and I are normal functioning adults and the outcome for Grayden would be very good.  To find this out Jackie and I will have to do genetic testing as well. 

We have an appointment scheduled for Tuesday, July 30 to see a metabolic and genetic specialist.  We will then know his exact diagnosis and what his future may look like.   I have spent so much time on google finding answers and reading about this.  From what I have found there has only been 25 reported cases of this rare genetic disorder.  There are so many not so great symptoms that come with this deletion,  and some of what Grayden already has.     

 Until then we are trying our best to be optimistic and believe that God has a plan for everything and does everything for the good.  We ask that you all please keep Grayden and our family in your prayers.  We have been down a scary road before with Gavin and know that the power of prayer does work miracles.  Gavin is a walking miracle.  Thank you in advance for your prayers.
Carissa