11:10pm

Things are not going well. What is the one thing in the world that can keep Levi from sleep? Indigestion. Guess what he’s got? He keeps squirming, kicking, arching his back and moaning;
disconnecting wires every time. We’ve been cuddling, bouncing, rocking and now co-sleeping. Hoping something works soon or we’ll have to reschedule.

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9:16 pm

Well here’s how things are going so far: He’s all plugged in, exhausted and clearly ready to sleep. As I type this he is asleep but if he tries to move he gets all tangled and angry and things start popping off. Then the poor nurse has to come try to put them back on, which makes him angry and squirmy. Poor guy. He’s calm and I’m quiet now so hopefully smooth sailing from here on out.

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Sleep Study Tonight

Tonight when you’re putting your kiddos to bed, or getting yourself ready for sleep, please say a quick prayer for Levi.  Tonight he is having a sleep study done.  They will hook him up to all sorts of wires and then monitor his body as he sleeps all night.  Please pray that he will have, above all, ACCURATE results.  More and more research is being discussed that shows sleep issues can be a major factor in brain development in children with Down syndrome.  We have heard him do odd breathing patterns in his sleep too so we need to be sure his brain is getting enough oxygen as he sleeps.  So, think of us tonight and say a little prayer.  Please pray that Levi and I both get a good night sleep at the hospital.  Pray also that all the instruments stay in place and get very accurate readings so we can move ahead with what is best for Levi.

Children's gave us some gear to take home and practice with.  The hope is to get him used to it so he will still be able to sleep with all that stuff on.  I wasn't as diligent with it as I should have been so PLEASE pray he sleeps!

Children’s gave us some gear to take home and practice with. The hope is to get him used to it so he will still be able to sleep with all that stuff on. I wasn’t as diligent with it as I should have been so PLEASE pray he sleeps!

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Denver Comic Con

So we finally went to our first Con!

It was amazing and such a blast.  I think next year I’d like to do one day with the kids and one day without.  But it was really fun to see the kids eyes as they saw all the cosplay.  Jayden was too afraid to get near enough to anyone to get his pic taken and I only got three of Levi but I’ll share them.  I tried to get Jayden’s pic with the Umbrella Corp. guys and he wouldn’t do it.  The guy was like “Oh come on, the princess did it!” (haha!) But Jayden was still not interested. lol Maybe next year.  I did get a couple of him by a sign though.

The best moment by far though was listening to George Takei. He was saying something about how amazing mankind is that we can just “reach up and grasp the stars [paraphrased]”.  I didn’t even think Jayden was listening.  But suddenly he turned to me and gasp.  His eyes were filled with pure excitement and he said, “Mommy!  I can scoop up stars with my hands?!”.  I hugged him and said, “Yes Jayden.  Yes you can.”  =)

 

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Education for ALL Disabilities

The first weekend in May, Josh and I went to the Parents Encouraging Parents (or PEP) conference.  I cannot recommend it enough!  Seriously.  If you know anyone in Colorado who has a child with ANY disability, or ANY educator or professional in Colorado who works with kids with disabilities (it’s not just for parents), please ask them if they’ve heard of this or gone to it.  It is sponsored by the Colorado Department of Education (or CDE) so if you don’t live in Colorado, check with your state’s Department of Education.  Maybe they do something like this or maybe you could start one.

 

For three days and two nights, the CDE puts you up in a hotel.  The room and all meals (except one dinner) are paid for!  That alone is enough reason to go!  Two free nights in a hotel with good food and a much needed break from the kids?!  Sign me up!  =D

 

It’s in a different Colorado city each time.  The one we went to was in Colorado Springs but I know they’ve done Estes Park, Aspen and others.

 

There is no child care provided.  The point is to get away from the kids for a few days.  Honestly, this is a critical point of the days.  Without the kids you can rest and learn well and come back to them as better equipped parents.

 

The three day conference unveils the mysteries about how to help your child get the best education possible.  In Colorado, children ages 0-3 with disabilities get services through the Early Intervention program.  At 3 years old, they are transfered to the education system.  They will then get what’s called an IEP or Individual Education Plan.

 

I was terrified of this.  I had no idea what to expect and honestly, all I had heard were horror stories.  One of the sessions at the conference went through the actual IEP, what it looks like, what’s on it, and what sort of things should be put on it by us and our team.  Another session had two lawyers who specialize in disability law.  They explained the appeal process if you disagree with your school and what you can do to be the best advocate for your kids.  I learned the legal definition of “adequate education” and the difference between “moderation” vs. “accommodation”.  I learned how to ask for an evaluation of my “student” and what my rights as the parent are.  This was from TWO of the many sessions.

 

Honestly, I don’t know if you can get approved to go if you suspect your child has an undiagnosed disability, but it would be worth it to find out.  There is so much they can help you with.

 

The other big help we got was from a behavioral therapist, not for Levi, but for Jayden.  She told us that was perfectly normal.  Sometimes we get so much help for our children with disabilities and are given no help at all for their sibling’s behavioral or emotional responses.

 

There was also a session on the grieving process, what it looks like in life, and stories of others who have lived it. There are a few small group sessions too so you get to talk things through with new friends in full confidentiality (well, our group made our own rules and that was one of them).

 

There was also a session just for men, which I think is really important.  I have no idea what they talked about.  (The first rule of the men’s group is you do not talk about the men’s group.)

 

There were so many good sessions and so much fantastic information.  I feel so incredibly well-armed now to be a great advocate for my son.

 

Pics!

 

This was our hotel.

This was our hotel.

 

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Colorado Springs is a beautiful city.

Street Art.  I didn't even see Humpty Dumpty until after I took the pic!

Street Art. I didn’t even see Humpty Dumpty until after I took the pic!

 

Dinner our first night!

Dinner our first night!

 

FANTASTIC book they gave us for free!

FANTASTIC book they gave us for free!

 

Folder full of valuable information... also, I tend to doodle... Always have.

Folder full of valuable information… also, I tend to doodle… Always have.

 

Very helpful and quick guide.

Very helpful and quick guide.

 

Again... I like to doodle. lol Also, this is a typical handout for a session.  The power points with room for notes.

Again… I like to doodle. lol Also, this is a typical handout for a session. The power points with room for notes.

 

There were a couple of times we got to pick which sessions we wanted to go to out of a group of choices.  Here's an example.

There were a couple of times we got to pick which sessions we wanted to go to out of a group of choices. Here’s an example.

 

 

And here’s some pics of the cuteness:

 

<3 Levi

I let him dress himself... backwards AND inside out.  That takes talent!

I let him dress himself… backwards AND inside out. That takes talent!

Talking on the phone, which is actually a remote. haha!

Talking on the phone, which is actually a remote. haha!

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I love this hat!

I love this hat!

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Levi can even put it on by himself.

Levi can even put it on by himself.

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Until big brother steals it.  =)

Until big brother steals it. =)

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Low Sensory Morning at The Children’s Museum

So The Children’s Museum in Denver, CO is awesome. One of the awesomest places ever, to be exact. But sometimes kids with Down syndrome or other disabilities can be overwhelmed by all the noise and excitement that comes with an awesome place full of awesome energetic kids. Levi’s been there before and enjoys it, but he does spend an inordinate amount of time just sitting and absorbing all the action with his eyes.

Soooo Traci McGrath, Museum Educator, has put together a Low Sensory Morning.  You have to RSVP and get on the list but it is FREE for families who have children with disabilities.  Attendance is capped so our kiddos are not overwhelmed by too many kids and they really get to enjoy the museums amenities.  Levi LOVED it!  I’m gonna post pics but first I’m posting the flyer because… guess what?!  They are doing another one in July!  Email or call now if you want to be on the list.  Levi and I will be there and it would be awesome to see you there too!! I hope they keep doing these events because this experience was so fantastic for Levi.

The staff was amazing, welcoming, energetic and kind.  I just got so many smiles and friendliness and help.  I really can not recommend it enough.

 

 

Tactile Sensory Fun!

He loves brooms right now!

 

WHY can’t there be one of these seats in every bathroom stall in the world? If your baby isn’t walking or standing great yet but you can’t bring the entire stroller into the stall, it’s this, leave them unattended in the stroller outside the stall, or plop them on the bathroom floor. Seriously, the world needs more of these seats.

 

Cheese!!  (He has a dinosaur tattoo on his arm)

 

Playing nicely with some of the other kids

 

Please, do not try this at home. (lol) He is really into climbing on low tables right now.

 

Open. Close. Open. Close. Open. Close. Open. …. Close.

 

“Hey girl! How you doin’?”

 

The staff here is incredibly friendly!

 

Actually this is my real life good friend Shelby, who also happens to work at The Children’s Museum!

 

Investigation!

 

And Discovery! Honestly though, I really don’t think he could have made the discoveries he made on this toy without having the whole place so quiet as it was.

 

One of his favorite things to do at home too

 

Throw things down the stairs!

 

Clearly having a terrible time. =)

 

Break dancing.

 

Just around the river bend!

 

Mirrors and wiggles

 

Ride the pony outta here!

 

Later that same day we went to Arvada’s Annual Kite Festival. It was beautiful and so much fun, as always!

 

Goodbye Peter Pan!

 

 

 

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Happy World Down Syndrome Day!

So I started this post on 3/21, World Down Syndrome Day.  It seemed like an appropriate day to get reacquainted with writing my blog.  It’s been too long.  But in usual Amanda tradition, I’m late. Haha!

Anyway, 3/21 is World Down Syndrome Day!  We celebrate on 3/21 because Down Syndrome is caused by a third copy of the 21st chromosome.

The reason why we celebrate people with Down syndrome is, well, because they’re awesome.  But also because sometimes it can seem like the world is against them.  With more and more articles being written with titles like “Down Syndrome May Soon Be Extinct”, it’s more imperative than ever that we show the world how amazing people with Down syndrome are.  Some medical journal articles argue for mandatory testing and some articles insinuate flat out say that if mothers knew earlier into their pregnancies that they were expecting a baby with Down syndrome, they would all abort.  One medical ethics paper (irony) even said that the negatives of having a baby with Down syndrome outweigh the posititve, which is a flat out lie and an ignorant bias.  Clearly the author didn’t even ask families what they think.  MSNBC reported that,

“Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome…Skotko also found that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome. A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked”.

At the same time though, more and more stories are coming out about the amazing things people with Down syndrome are accomplishing when given the chance.  Everything from owning a restaurant, to climbing to the Mount Everest base camp, to learning German to star in a film, all things I certainly couldn’t do.

The point is that Down syndrome does not need to go extinct anymore than a hair color or skin color needs to be forced into extinction.  After so many decades of people with Down syndrome being grossly undervalued, neglected and even hated, it is time to show the world what fantastic and amazing gifts they really are.  And what better way to do that than a World Down Syndrome Day?

So, back to the blog.  It’s been such a long time I thought I’d just make a quick video montage of pictures to get us all caught up.   It’s about 4 min long and put to one of the best songs ever =).

But first,

Levi is walking!!

And here is the video to summarize quite a few months in a little over 4 min.  I have been contacted lately by a few people who are, right now in the middle of something similar to what we went through.  I hope this video shows you that sunnier days are coming.

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Step Up!

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

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When God Promises

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.

 

 

 

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The Typical Child

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

 

 

 

 

 

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