March 8 n Trisomy 8

First, let me say HAPPY 4th BIRTHDAY SARIE ELLE!!! Yes that's right we have a 4 yr old in the house now. Such a sweet kid too! More on her over at our family blog

Now on to Trisomy 8. March is Trisomy awareness month, did you know that? Some Trisomys I bet you know about, like 21, the most common which is Down Syndrome. Most text books quote the incidence of Down syndrome to be between one in 700 to 800 live births. People with DS are now living longer than ever before. Then there is 13 which is Patau syndrome Trisomy 13 occurs in about 1 out of every 10,000 newborns. Most cases are not passed down through families (inherited). Instead, the events that lead to Trisomy 13 occur in either the sperm or the egg that forms the baby. Trisomy 18 is Edwards Syndrome. Trisomy 18 occurs in about 1 in 5,000 newborns. Approximately 80 percent of newborns affected by this disorder are female. Although women of all ages can have a child with trisomy 18, the chance of having a child with this condition increases as a woman gets older.

Trisomy 18 and trisomy 13 are genetic disorders that include a combination of birth defects including severe mental retardation, as well as health problems involving nearly every organ system in the body. Unfortunately, 90 percent of babies born with trisomy 18 or 13 die by age 1. It is important to note that 5 to 10 percent of babies with trisomy 18 or 13 do survive the first year of life. Therefore, these disorders are not universally fatal and, in the absence of any immediate life-threatening problems, accurate predictions of life expectancy are difficult to make. There are a few reports of babies with trisomy 18 or 13 surviving to their teens, however, this is unusual.

There are other Trisomys out there as well. But now I will talk about Trisomy 8. If you try googling trisomy 18, 13,9 or 21 you will have a lot of info come up. That doesnt happen with Trisomy 8. When we first heard about Noah we were told that he probably had Cri du chat syndrome. That is a french term for cat cry syndrome. The condition affects an estimated 1 in 50,000 live births, strikes all ethnicities, and is more common in females. So we looked online and the what we found was a lot of bad news. At least it had a name. Then we found out it wasnt Cri du chat but Trisomy 8(q24).

What is Trisomy 8? Well, we would love to know that too. Lol. Trisomy 8 from what we have found out affects the 8th chromosome. This is what we have found online: Trisomy 8 is defined as the presence of three full copies of chromosome 8 in all of a person's cells. Mosaic trisomy 8 describes the situation that occurs when only a portion of these cells contains three copies of chromosome 8, while others contain the usual two copies of that chromosome. For example, people with mosaic trisomy 8 may have cells in their blood and other tissues with the normal chromosome number, but may have cells in their skin with trisomy 8.Full trisomy 8, which occurs when all of the body's cells contain an extra copy of chromosome 8, is not compatible with life. A similar but less severe condition called mosaic trisomy 8 occurs when only some of the body's cells have an extra copy of chromosome 8. The signs and symptoms of mosaic trisomy 8 vary widely and can include intellectual disability, absence of the tissue connecting the left and right halves of the brain (corpus callosum), skeletal defects, heart problems, kidney and liver malformations, and facial abnormalities. Trisomy 8 mosaicism is also associated with an increased risk of a specific type of cancer of blood-forming cells called acute myelogenous leukemia.

I have to say upon meeting Noah for the first time I never felt like this was hopeless. I still dont. I dont feel like I live daily reminded he has Trisomy or that his life is destined to be short. To me he is a typical kid. He does things on his own terms at his own time. He has a feeding tube which at first I thought would just be the worst thing ever. I said there is no way I can deal with a feeding tube and yet here we are. dare I even say that I am a pro at it. Now I even find it funny when I disconnect him and his mickey button lets a ton of air out and makes a funny sound. We joke that its like a release valve in him. How many of you have kids that have a deflate button?

I have to say that before I had a child with a Trisomy my world was ok. Now after having a child with Trisomy my world is brighter. I see vivid colors and beautiful smells and the sky is bluer, the birds chirp louder and life is just amazing to me. To think that I may have gone through my whole life never seeing the world like this just saddens me. I have learned true strength. I have learned endurance. I have learned to appreciate the small things. I never knew a child crying would bring me joyous tears. Never did I think we would sitting would be reason to throw a party. Or that taking a few steps would make me jump up and down with excitement. Since having Noah my life has had more tears(mostly joyful), more emotions than ever before. Since having Noah I have found my voice not only to stand up for him but for my other children as well.

My hope is that one day we can add another Trisomy baby to our family. I also hope that by becoming aware you would consider helping a child with a Trisomy. Many children who have Trisomy are available for adoption all over the world. So many of them unwanted and dying alone in a room simply because they had extra chromosomes. So all I ask is that you pray. Pray for the babies born with trisomy. Pray for the families affected by Trisomy. Pray for God to open your eyes and your heart and do what He asks. Make yourself aware. I dont mean to get all 1980 abc on you but Knowledge is power :)
Here are the many faces of Trsiomy


Be Blessed

What Noah is...

If what I am is what’s in me
Then I’ll stay strong – that’s who I’ll be
and I will always be the best
me that I can be.

There’s only one me, I am it
have a dream I’ll follow it
It’s up to me to try.

Oh! I'm a keep my head up high
Keep on reaching high
Never gonna quit
I'll be getting stronger.

And nothing's gonna bring me down (no!)
Never gonna stop, gotta go.
Because I know
I'll keep getting stronger.

Bridge 1
And what I am is thoughtful
what I am is musical
what I am is smart
and what I am is brave
what I am is helpful
what I am is special
There's nothing I can't achieve.
Because in myself I believe in oh...
Gonna keep our heads up high

Keep on reaching high
Never gonna quit
Just keep getting stronger.

And nothing's gonna bring us down (no!)
Never give it up, gotta go.
Because I know
I'll keep getting stronger.

Bridge 2
What I am is super
what I am is proud
what I am is friendly
what I am is grouchy
what you are is magical
what you are is special

There's nothing I can't achieve.
Because in myself I believe in oh...


Chorus 3
Gonna hold my head up high
Keep on reaching high
Never gonna stop
I'll be getting stronger.

Nothing's gonna bring me down (no!)
Never give it up gotta go, oh... yeah...
I'll keep getting strong--er.

Truer words never spoken about my boy Noah. On Saturday Noah decided that he was going to take steps while holding our hands. Some of you may think, "Yeah. So. Whats the big deal?" Well it is a huge deal. Noah doesn't like anyone touching his hands and Noah locks his knees when he stands and refuses to bend. This is amazing! Not only that but he decided today to crawl forward. He was crawling all over the place today and then I would hold his hands and he would walk. His therapists were in utter disbelief! They kept saying,"But I just saw you last week?! This is amazing!"

This is a child that we have been told over and over again would not amount to anything, would be a vegetable(told to us at 2m old prior to adoption), would die soon(told to us at 9 months old), is going to be severely mentally and developmentally disabled(told at 11 months). I am sure there are more but those 3 always stood out. He has proved so many wrong. Also today he has tolerated bolus feeds for 3 days so far. Doctor said he would never be off of continuous. He is a miracle. All children are in their own way. I now understand why mothers say their special needs kids are their heros. I think that is why God puts Trisomy kids on Earth, to teach us, to inspire us, to make us want to strive to be better, greater, happier and to love life and appreciate all we have. Noah is my hero. He is everything I want to be and I am 29 years older than him. How does he have it all figured out already?

O LORD my God, I called to you for help and you healed me. Psalm 30:2
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. James 1:2-3



(Best if played in HD)

Be Blessed

Faith's Clothes

Tonight we were going through old things packed up when we found a bag of pretty baby girls clothes. They were all folded neat and tidy. Great care was taken in putting each and every one in the bag. I saw the onesies and I knew. They were Faith's clothes. (For you newbies Faith is the Russian baby we had a failed adoption with.)

It stung.

We will be donating them to a pregnancy crisis center.


Be blessed

One year ago today.

At 11:16am a year ago today my sweet handsome son was born...and I had no idea. Last year we were busy doing a spaghetti fundraiser and avoiding the horrible news that our adoption of our Russian princess had failed. We were grieving but I was still fighting for her. I wasnt ready to give up or give in. Honestly I wasnt ready to let God lead.

When I realized it was over I was crushed. I mourned like I had lost a child already my own. Little did I know that the one who turned our mourning into joyful dancing was being born at that very time.

Here we are a year later. 9 months after we brought Noah home and celebrating his first birthday. I never thought this day would come. I broke down in the toy aisle in Target today. Shopping for baby boy toys was not something I thought I would ever do. I feel so very blessed.

I think any adoptive mother spends the birthdays thinking about the mother who is also celebrating this day but very differently. I texted Noah's birthmom this morning. I think of her everyday we talk almost daily as well. We will be seeing her for Noah's birthday party in Texas on the 19th. Her and her family. But today I thought about her in a different way. I have no idea what it is like to hand a child over to a woman you met just hours before. I have no idea how you get up in the morning and go about your day knowing that you have a child but do not see him daily or talk to him or hold him, snuggle him, stare at him while he sleeps or smell his beautiful head. I think it is the most self less thing you can do for your child, to say I want something more for him and hand him over.

I spent today in awe of the great God we serve. Praising him for all he has done in my life. Praising him for the little miracle we have sleeping in his crib right now. Praying for the birth families that they would have a good day and be at peace about their decisions.

I still cant believe that God chose me to be his mama. I can't believe his birthmom chose me to be his mama either. I am the luckiest mama in the world. Given everything we have gone through these last 9 months I would totally do it again in a heartbeat and have 10 more kids just like Noah.

Happy Birthday Noah! You have turned our mourning into dancing and we are so amazed by you. We love you and look forward to the many birthdays we will have together.







Oh and before I forget...
Fun facts. Noah stood up on the couch all by himself for probably a minute or two. He also tried to stand from sitting position and when we were at the allergist this morning he started to crawl forward. YAY!!!
Be blessed

Hope. There is always Hope.

Thank God for God my friend Nina always says and oh how true that is. Without God today would not have gone the way it did. Without God I would not feel the way I feel. Without God I would have no hope. But, I do!

I pleaded with God, "Please just give me his birthday! We didnt get Christmas, please!" I thought if I could just talk to that one woman who has a child with Trisomy 8, maybe I could make a decision.

The gastro doctor called, then the surgeon. The surgeon said he doesnt think the nissin is for Noah. He said it is for refluxers not retchers and he feels Noah is more a retcher than refluxer. I agree. He told us flat out that GJ tubes were nuisances. When they work good thats great but when they don't which happens often then that can be trouble. Then he told us about a surgery that is for retchers but he doesnt recommend it. It is a 3 hour surgery, they have to open the child up. Then they detach the esophagus from the stomach and have it drain elsewhere. Noah would never be able to eat by mouth ever again, but the retching would be cured. UM? No! That may be good for some folks but I am not there yet. I ask him, if Noah were yours, what would you do? He said out of the choices given it would be a GJ.


I skyped with Nancy and told her our options. There would be no way I would take away Noah's ability to one day eat. I know he can do it, Nancy knows he can do it, Paul believes he can too. So at that moment it was a GJ.

Then God worked his awesome-ness. I went to check my email and there it was. An email from the women who has a son with trisomy 8. PTL! She left her number and I called. I never call people but this time I called. We talked for an hour at least. There are so many similarities to her son and mine. We then chatted again later and again it was fantastic!

After her and I spoke I felt more at peace. I realized that I do not have to do what everyone tells me to do. I need to get rid of some of the doctors. I need to do what my motherly instinct tells me to or aka the Holy Spirit tells me to. Noah has had no damage to his esophagus by retching. He has never once shown any signs on tests that he has reflux. Reflux meds can cause vomiting. Noah is growing well and gaining and sustaining. He has delayed gastric emptying and vomits in the morning everyday. Paul suggested we cut the overnight feed a few hours before 9am and see if it helps. We do not need a GJ tube.

The dr refuses to let us stop his feed but agreed to let us go to 20mls for 4 hours in the morning and we can pick the time. He says if this doesnt work we get a GJ. No. We dont. I trust my doctor and respect him, but if his vomiting isnt affecting his health and it is a T8 characteristic then we can deal with it as long as he stays healthy. Also if we chose to cut his feed for 4 hours and it makes 20 hours of feeding better we will. We wont do that at first though. We are also weaning him from his prevacaid. If anything happens we will put him back on but the 3+ months he has been on the meds nothing has changed.

So after a morning of crying and yelling at God like a 5yr old He listened and answered and we now have perfect peace. Thank you Lord.

Be blessed

Oh keeps getting better

Doctor called. Pedelite for 24hrs. Then he said words that just made the tears flow. We have 2 choices. Nissin surgery with a 5-10% dr failure rate and 50% patient failure rate or a GJ tube with high risk of aspiration and migration of j tube. He said there is no easy choice.

I dont want to write anymore right now. My friend sent me this in a text this morning,
"What is impossible for people is possible with God."
Please pray.

Be blessed.

Please not again, not now.

Monday the nurse said Noah vomited green mucus. We didnt see it after that. Monday and Tuesday he did not go to the bathroom. Tuesday night he spent screaming. I am assuming constipation. At 1am wed morning I gave 10ml of apple juice. 9am massive diarrhea, apple juice worked. Also green spots on sheet, vomit? We aren't sure. 9:45am violent retching. Vomit everywhere. Called the doctor, no answer. No surprise.

Please God not again.

His birthday is tomorrow. We missed Christmas can we please just have this, please?! I just want him to be better. No vomit, no pain, figure this out for pete's sake! PLEASE GOD PLEASE! HEAL NOAH(on earth)! NO MORE VOMIT! In JESUS name, Amen.


Please pray for Noah. Pray for strength for us as a family as well.

Be blessed