A visit to Great-Grandma's place

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My grandma has been there since the day I was born. We have laughed together, cried together, argued, but in the end I was very close to her. She now lives in an assisted living home and has Alzheimer's... Sometimes she remembers me and other times I'm her sister. It isn't always easy to go visit her because every visit she cries except one. One I will never forget....

The first time she met JJ....

She told him how much she loves him

She was singing to him

She thought he was the most beautiful baby boy ever

She was looking around to see if there was anyone there that she could show him off to.

She even smiled for the picture!

Crazy thing is I've taken the girls to see her many times and she LOVES them so much but she still cries every visit. Something about this visit was just different. She was so happy! She has no idea that he has Down syndrome and it was great to see her look at him and love him unconditionally without analyzing his characteristics. She just saw him as a sweet little baby and nothing else.

I'll have to track down the pictures of her and the girls. They were taken on someone else's camera.

Statistics..... are just statistics and nothing more..

From the minute JJ was born he was not following the normal statistics for children born with Down syndrome. He could lift his head the day he was born, he could squeeze your finger, ect. All stuff that "should of" taken him longer according to STATISTICS... Thankfully JJ is an individual and NOT a statistic. They weren't even sure that he had Down syndrome because he was TOO strong and because he cried when he received his first shots. They gave us a 50/50 chance that he had it or didn't. I knew he had it; all the lab work did was stop the speculation surrounding us from others. Typical children roll over by 3 months of age... Baby JJ rolled over at 5 weeks 2 days and I couldn't be more proud because it goes to show he can do whatever he wants at his own pace.


Each milestone is a celebration.... On a milestone chart for typical babies; JJ has hit every single one. I know this may not always be the case but I don't want to compare him to statistics his whole life. I want him to do things on his own time and not because he is suppose to or not suppose to yet. He is an individual just like any other baby and that is how he should be treated.

I remember the day we were leaving the hospital and we had a new nurse that day. I never knew people could be so cruel... Her words were "These kinds of babies"..... Wow.. These kinds... She was classifying him as a kind? I thought he was just a baby that was born with an extra chromosome? That is when I realized that Jared and I would always raise him the same way as our other children. He shouldn't be treated any different then they are just because he has a little extra special something. He should have the same opportunities in life as any other child in this world. I am confident that he will do great things and continue to amaze us all every day!

To end this I'll ask that you all click on the link in my previous post to pledge to end the use of the R-word.

Thanks!

Oh and do you want pictures?!?!

Teddy bears dressed in baby brothers clothes!

R-word | Spread the Word to End the Word

R-word Spread the Word to End the Word

The Geneticist

Normal male cell pattern is the above picture

So today was the day that we got to talk to the Geneticist so that she could explain how it happens. I say "we" because I brought my mom and the little man! Jared wishes he could of been there and I know he would of enjoyed the massive amounts of information she gave! It was actually quite interesting. There are three types of Down syndrome that baby J could have; Trisomy 21, Translocation, and Mosaicism. He more than likely has Trisomy 21 but it is possible that he has Mosaicism. It would require further testing to determine that and it is optional. Both Trisomy 21 and Mosaicism have the same exact physical, emotional, and medical treatment. Trisomy 21 cell pattern looks like this  







There is always an extra chromosome 21 on each cell within the body. Instead of 2 copies of chromosome 21 there are 3.. Guess that’s why it’s called "tri"! Mosaicism is a very rare form of Down syndrome, she said about 3 percent. It is similar to Trisomy 21 but instead of every cell having a third copy of chromosome 21 only some cells do. They have no way of telling what part of the human development Mosiacism would cause. Heart, brain, ect... It could vary greatly. In order to rule out Mosiacism they usually test around 30 cells, for some reason only 5 of his were tested. She plans on calling the lab that the test was done with to see if any further evaluation was done or if we would have to have new blood taken. All five of his cells that were tested showed the extra chromosome 21.

We can be extremely thankful that it is not translocation Down syndrome. The Geneticist was almost 100 percent positive it is not translocation because of the original lab results. In translocation the pattern of the cells would look much different than his do. Translocation is when that extra copy of chromosome 21 is attached to another chromosome; weird and complicated. Either parent can be a carrier of translocation and in turn have a child with Down syndrome as well as pass the gene on to their children. Portlynn and Maddalyn would of been at risk for being a carrier as well

So basically it is a fluke that Baby J was one of the lucky little guys to be born so special. There is absolutely no medical science that could prove why it happened. Neither Jared nor I fit the criteria for at risk. Just somewhere along the line something didn't divide right (look up cell division for Trisomy 21 if you want details). She said that is was something that happened before conception and they just haven't figured it out yet. In the future if Baby J ever needs lab work done I will ask that they draw extra blood to rule out Mosaicism to kill our curiosity. We will wait thought until he actually needs blood work done; no need to torture the little guy :)

Did I confuse you yet?

And now some picture from this morning :-)

A perfect fit for Baby J

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As god in heavens
Looks down from above
To him I’m no different’
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do as you do
But at my own pace- author unknown

The beginning of our new journey.......

The Beginning of the journey……..

Jared and I have decided to start this blog to share updates on our family. The last week has been an emotional one and we haven’t shared it with very many yet.

First off the girls are doing excellent and they love their preschool. They are so much fun and they bring tons of laughter in our house!

On to the week that changed our lives and brought us even closer……..

On Tuesday morning the 18^th of January we went to my last ultrasound appointment to see little Jarod. My amniotic fluid level was low and the Doctor decided that we would do the c-section that night at 5:30 p.m. We got to the hospital at 3:30 and they prepped me for surgery. It seemed to take forever and we were so excited to meet him. At 6:01pm he was born and his little cry made its presence in the room. They showed him to us and he had a head full of hair. They cleaned him all up and I could see the nurse looking him over while they were still working on me. I had no idea anything was wrong, but I kept seeing her take his blood pressure over and over again; and provide him with some oxygen through a mask. She was extremely quiet about it all. The nurse and Jared left to take the baby to my recovery room while they finished up my surgery. My surgery took a little longer due to some unexpected problems.

When they wheeled me into the recovery room Jared was helping give the baby his first bath. Next they gave him his shots and then it was time for him to eat. Jared went to go get my dad and the girls from the waiting room. The nurse asked me if I wanted to feed him his first bottle and I said yes. She brought him over without his hat on which I found odd, until I looked at him. I knew immediately but kept quiet. She asked if I had any questions and I said no, should I? She said I think you will. She knew, I knew………

The girls came running in and were so excited to meet their baby brother. They smothered him with kisses and so did G-DAD(my dad).

Then my doctor came in……. The nurse took the baby from me and handed him to my doctor. It was really quiet. My doctor handed him back to me and told us the news. “Your baby is showing characteristics of Down Syndrome.” He went on to tell us that he had no idea when he delivered him because it wasn’t very obvious. We were all in shock. I had ultrasounds twice a week for as long as I could remember and not one time was there a sign. Tears ran down my face and all I could say is I want my mom…. She was suppose to come on Thursday night and had mandatory meetings at work on Wednesday. My dad told me it would all be ok and was trying to stay strong for Jared and I. My dad left the room and came back in to tell me my mom was on her way, then left for the night. Jared and the girls stayed for a little while longer but it was way past their bedtime. When they all left it was hard. It was hard for Jared to have to leave and just as hard for me to be there alone. Portlynn wanted to take baby J home in her gift bag and let him sleep in her bed. It was the cutest thing ever. We had given the girls presents from baby J to them to make them feel special.

The nurse stayed by my side pretty much the entire time until my mom arrived except for when my doctor came back to talk to me. He must have talked to me for at least an hour. Not about anything particular, more just to let me know he cared about us and that he was here for us.

I spent the next couple hours cuddling with my new little bundle of joy until they took him to the nursery for an assessment. My mom arrived at 1am and we asked for them to bring him to us. She held him and loved him and of course cried… It didn’t matter that he was born with an extra chromosome, we all loved him already. He is the sweetest baby boy we have ever met. My mom stayed for an hour before she went to my house to take over watching the girls so Jared could come to the hospital. When he got back to the hospital the baby was in the nursery and we talked for a little while before we had them bring him to us. When they brought him to us; Jared changed his diaper and we fed him. He fell back asleep so we wrapped him up and put him in his little bed. We talked all night; I don’t even remember falling asleep.

They came and got Baby J in the morning for an echo on his heart. He got a clean heart bill except for a vessel that didn’t close off. It is called a PDA for anyone out there that likes to do research.  He will have a repeat echo on the 9^th of February to see if it has closed on its own and what the course of treatment will be if it hasn’t. This was a huge relief as many children born with Trisomy 21 have major heart defects. Things were looking brighter and we were starting to realize that this isn’t the end of the world. We knew he would be very special and bring us lots of joy; which he already has.

He is by far the best baby EVER. He sleeps so well and I can count the number of times we have heard him cry. He is so sweet and loving. His sisters like to play mother hens to him and we are constantly watching them. They just love him so much they can’t seem to leave him alone! The two of us love him so much that we might be spoiling him a little, but you can’t spoil a baby right?

Even though the next few months will be filled with many appointments and be crazy at times, we wouldn’t trade him for anything. We were given him for a reason and we can honestly say he was given to the right family. Our family will fill his life with unconditional love……

After we wrote this we received the results of his labs on January 27th and it confirmed the diagnosis of Trisomy 21. We will be getting several referrals to specialists and an early intervention program.

The best advice we have received was from our absolutely amazing Pediatrician.. "Don't ever let anyone tell you that he can't be all that he wants to be!" Our response "Don't worry he will be the next Tiger Woods!"

The Stacey’s

PS- We chose to only share this information with our immediate family and a few VERY close friends at first. We asked them to please not share with anyone until we were ready, so don't be mad at them for not telling.