Levi had been in the hospital for three months.  Every day of his life since he was born.  He had never felt the sun kiss his skin.  He had never felt fresh air in his lungs.  His eyes had never seen the true light of day.  Three months… already…

He had already had three life saving surgeries, two life saving blood transfusions, and now the doctor was suggesting a fourth surgery.  Since his last surgery (which we weren’t even sure worked) we had waited for recovery and we had started trying to get him to eat… again.  He needed to eat the volume suitable for a three month old but had never really been able to eat for his age.  Most of his growth was from nutrients pumped into his body through an IV.  We had only been trying feedings for a week, but for anyone who has ever fed an infant you know… a week of feeding an infant feels like THOUSANDS of feedings… each one falling short is devastating.

One day during rounds (when the doctor updates the oncoming nursing staff for that day about the patient’s current status and needs) the doctor said to all of them, and me for the first time, that Levi had been scheduled for a G-tube this coming Friday because he won’t eat…

That was a really long week for me.  I knew in my core it was wrong for him.  I had a meeting… a very intimidating meeting… with the doctor and nurses and my husband and Mom (words will never suffice to explain what my husband and parents gave to me during those 3 1/2 months) where I convinced them to give Levi one more week.

Then I called Bev.

Beverly S. has a grown daughter who has Down syndrome and she has been an unbelievable mentor to me.  I asked if she knew any specialists I could talk to.  I just needed to know if I was being unreasonable to expect Levi to learn how to eat if given enough time.  I knew nothing of Down syndrome’s physical disabilities and I needed an expert to tell me one way or the other.  I needed to know if I was going to end up in the NICU waiting forever for something that would never happen or if there was hope.

Bev called the Mile High Down Syndrome Association on my behalf and they gave her Dr. Hicky’s number.  I didn’t even know who I was talking to or why, all I knew was they gave me his number and I was desperately searching for anything resembling a lighthouse in this storm.

He spent an an hour on the phone with me.  He learned every detail he could about Levi and everything he had been through.  Then he personally found the number and called the Dr’s at the NICU.  He spent at least an hour on the phone with them discussing Levi…

Suddenly, the Dr’s in the NICU felt Levi just needed more time!  Amazing!

A week later Levi was breastfeeding (something I was told babies with Down syndrome often can not do) and we were headed home.

There is SUCH a list of people I will never be able to thank enough for that.  Really soooo many people and if you’ve been reading this blog, you are one of them.  I could never in a million lifetimes repay what was given to me during that time.

But every year, the Mile High Down Syndrome Association has a walk.  The donations from the walk all go to the association to support what they do.

They were a VITAL stepping stone to saving my son from a G-tube and they may have saved his life (each successive surgery had a MUCH longer recovery time).

If you want to support this AMAZING organization and join us in thanking them for what they did for Levi, click here or the link below and join our team!  We are walking together in love and support for Levi and the unexplainable, unbelievable, unreasonable blessing he has been and thanking the MHDSA for their part in his health.

https://secure.ezeventsolutions.com/fr/MHDSA/2012StepUp/TeamLeviathan

There are many ways to donate.

As a curiosity project I’ve been researching global treatment of people with Down syndrome.  I contacted the Down Syndrome International Group.   They said, “your location in Denver means that you have access to some of the best expertise available for the development and health of your son Levi and that will be hard to match”.  I believe this is in (a large) part, due to the MHDSA and what they do.

Thank you friends for all you have already given us.  The blessings and prayers are, everyday, a part of my gratitude.  I hope we get to see you walking with us (in spirit or in person) on September 23rd!!

<3  Amanda

When Levi was going through all of those health struggles the first few months, I knew people in places all over the world were praying for him or sending good thoughts and deep wishes. It was such a shining light of hope for me. It was often my lifeboat and I could never thank you all enough for that.

What I didn’t even realize is that people, many people, are still praying for him. It overwhelms me with gratitude and shakes me to the core. I know now why he is doing so well. We work hard but there are things that could only happen by the grace of God.

Yesterday I got to meet some more of the people who are still anointing Levi with prayers. Levi got to meet them too and was adorable blowing kisses. One of these ladies told me a story that made me cry.

She said that one day, while Levi was in the hospital, she was out planting roses in her yard. She was praying for Levi and felt like God told her to plant this one specific rose bush for Levi. She said that now that one rose bush has flourished. It’s thriving better than all the rest. She said it stands much taller and wider than all the rest with many more blossoms.

It touched me so deeply I instantly cried, I cried retelling it to Josh and I’m having a hard time not crying now. I can’t explain it but to me it felt like a promise directly from God. When God makes a promise to a person, he ALWAYS keeps his word. Levi will not just survive his diagnosis, he will THRIVE!

I feel like there is a story in the Bible that echoes this but I can’t figure out what it is. I’ve never had a whole story on the tip of my tongue before. I tried looking for it but don’t even know where to look. Let me know if you can think of it!

God is already revealing how he keeps his promises.  Levi is already thriving!

Good morning world!

We were trying to feed Levi cake at the party. He managed to grab a handful and in an instant had it all over his face! Clearly he hates cake.

Declyn is, I think, only two weeks younger than Levi. They play so well together.

Ha ha!

Do you see Levi in the mirror? They both sleep exactly the same! Partying is so exhausting.

Levi’s progress with his therapists gets evaluated every six months. A couple of weeks ago his speech and occupational therapists came and asked me a ton of questions. “Can he do this?” & “Can he say that?” kind of things. They came and reviewed it last week. They said he has a 20-25% developmental delay. One therapist said at first that for a child with Down Syndrome that is very good. But then they said it equals approximately a 3-4 month delay. I pointed out that he spent the first 3 months of his life in the hospital just fighting to live. The therapist said that in most places in the world they would subtract those months from his age so technically speaking he is actually right on track for the development of a typical child!! (“Typical” is the P.C. term used to describe people without disabilities)

This is really fantastic news! I’m so proud of both of my boys! They amaze me everyday. Some people in this world will never know what it means to love this way and it breaks my heart for them because they are truly missing out. We are the fortunate ones aren’t we?

Everyday after diner we take a walk.

Typical child love chocolate cake! =)

Jayden and I had a special, “JJ & Mommy Day” at the Zoo

I’ve been looking up videos about Down syndrome on Youtube.  Some have been informative, some have been sweet or funny, but this one, this one touched my heart.

I think at some point every parent will worry about this.  ”How will my kids fare when I am not here to help?”  When Jayden was born though, I didn’t really think about that.  I thought of how perfect and beautiful he is and how many amazing things he is sure to accomplish in his life.

I thought the EXACT same things about Levi when he was born.

But when I was 30 weeks pregnant with Levi, the geneticist called.  I called her back thinking, “Well it must be good news because you wouldn’t call someone and tell them over the phone that their baby has Down syndrome”.  But that was exactly what she did.

She said “I know it’s a week early but I have the results from your amniocentesis.  It was positive for Down syndrome, your baby has trisomy 21.”

She first asked if I would be “continuing with the pregnancy, even though we are so far along” and I said “absolutely” with out even blinking.  She then began to ramble off all this information about groups we could join and websites we could look at.

But one of the first things she said and something that has echoed in my mind since was, “Some of them are even living into their 60′s”.   I had never before pondered, “Gosh, I wonder what age my baby will live to be” and now suddenly, here I am wondering if I’ll outlive him.  I know her intent was encouragement but it has been a little nagging thought in my head for a while.

This video reminds me that I am not alone.  There are others walking through these very things right now and together we will find the right answers.

I think today will be another one of those days for me.  Remember the morning of Columbine?  Remember the morning of 9/11?  Remember the movie theatre masacre?

This morning the first thing anyone said to me was my Mom asked me, with tears in her eyes, “Have you been on Facebook or seen the news yet?”.  ”No, why?” I said.  She couldn’t even get the words out without tears, “Someone started shooting people in the theatre during a midnight Batman movie premier”.

I was shocked.

I am still shocked.

I think a lot of us are still shocked.

“Where was this?” I asked, assuming somewhere far from here.  ”Aurora”, my Mom said.  So close to home.

Colorado is heartbroken.  But Colorado is strong and we support each other.  When I got on Facebook at 9:30am links were being shared all over the place saying that the Bonfils Blood Center needed donations.  Not even 15 minutes later Bonfils released this statement on their Facebook page:

Thanks to the phenomenal support of our Colorado community members our appointment schedules for today have filled up quickly. We’re currently experiencing a high volume of calls and sincerely appreciate your patience. Donors are strongly encouraged to schedule an appointment in the coming days to help replenish and support the critical needs of our hospitals and their patients.

People everywhere are looking for ways to help the victims because that is the spirit of Colorado, and really, the American spirit.

For anyone who might be interested in helping, the Bonfils Blood Center will be taking appointments for blood donations as they can and they are also accepting monetary donations.  The City of Aurora’s website  says to call 303-739-6346 for food donations but this is not for donating money.

I’m sure we all know by now that the shooter said his apartment is rigged with explosives.  The other residents of that apartment complex have been evacuated until the police can clear it.  If anyone has any specific information on how to help those displaced people, please let me know.  The Denver Post says here to check with GiveFirst.org to be sure you are giving to legitimate organizations.

There are really no words that could suffice to give the victims of this tragedy, except that I am so sorry and so heartbroken.  My thoughts and deepest prayers are with you all.