Tragedy

I lost my step-father last night. My heart is aching. He died of natural causes, but we don't know exactly why or how. It is a total shock. Please keep my mom and the rest of my family in your thoughts and prayers. There will be difficult days ahead. I will try to keep blogging because one of Sam's favorite things about me was how I kept people connected. He would like it if I was keeping people together. I love you Sam. love, Amy

Beautiful Girl

25 Things

25 Things About Chloe - in no particular order!

1. Chloe was born unexpectedly in Maine while we were on vacation. She was 3 weeks early. She will forever be considered a "Mainer" because she was born there!

2. Chloe's name came to me when we were driving to her prenatal echo to find out how bad her heart condition was. Turns out it was the perfect name for her meaning the bloom or shoot of an early spring branch.

3. Chloe has an extra 21st chromosome which means she has Down syndrome.

4. People tell me Chloe has 3 phases of her smile. When you get to the third phase it's hard to resist!

5. Sierra, Chloe's middle name came from Stacey's truck, but is very fitting because it means mountainous terrain, which represents the "mountains" she has to climb to overcome her health issues.

6. Chloe had 7 hopsitalizations and 2 surgeries in the first 6 months of her life.

7. Chloe is absolutely in-love with her older brother Xander and older sister Sadie!

8. Chloe attends a toddler program that her mommy and friend run 5 mornings a week.

9. Chloe LOVES music.

10. Chloe is the 6th grandchild to my mother, 5th grandchild to my father and 8th grandchild to Stacey's mother. She is the 6th great grandchild to my Nana.

11. Chloe has a small opening to her airway which can make crying, eating and breathing difficult. But as she gets better it seems to get better.

12. Chloe likes to crawl on her belly to get things.

13. Our dog Miles likes to likes to lick Chloe.

14. Chloe is 13 months old.

15. Chloe takes almost all her liquid feeds through her g-tube because she has a lot of trouble drinking without choking.

16. Chloe LOVES her daddy.

17. When we read her books, Chloe smiles and laughs!

18. Sadie's favorite thing about Chloe is playing with her.

19. Xander says Chloe is adorable and chubby.

20. Chloe looks cute in pink.

21. We found out that Chloe had a heart defect and Down syndrome when we went for our 20 week prenatal ultrasound. There was no question in our minds whether or not to "keep" her.

22. Chloe has been involved in changing protocol at Yale New-Haven Hospital!

23. Chloe participated in several videos for Ds advocacy for the CDSC.

24. Chloe's first 2 teeth to come in are eye teeth and they're adorable (and sharp)!

25. Chloe is the love of our lives!

Go Chloe!

Man is she quick with her commando crawl. It's not quite a commando crawl, because she does get her whole body into it, not just her arms. She just can't get her legs up under her body. But she's twisting and scootching and pulling with her arms - whatever it takes to propel herself forward. And it's usually for that super small choking hazard on the floor across the room! We're going to spend tomorrow trying to get the house a little organized so we can baby proof. the time has come. . .

Rabbit Rabbit

Well, rabbit rabbit. That's what my family always says on the first of the month for good luck. Let's hope it brings some. :)

Chloe's doing GREAT lately. She has recently really started commando crawling. Now if she could just get up on those hands and knees there'd be NO stopping her! She's eager and ready to go! I'll try to post a video soon.

As for eating, well, that's going well too. The past few days she's taken 1-2 ounces of milk by bottle. I just love LOVE the chance to hold her and look into her eyes while she takes in the nourishment, stopping occasionally to coo and babble at me, then continuing on with her work. We snuggle and relax and just enjoy each other's company. It's the moments I've been LONGING for these long month feeding through the g-tube. I've even contemplated trying to nurse again, but at this late stage I'll just be happy with a few ounces from a bottle. We'll also continue to present the cup and honey bear (bottle with a straw) at meals to encourage her to drink in all forms. She's also really starting to take to more "solid" foods, as opposed to just purees and baby cereals. She loves fruits and veggies cut up into small pieces. Docs say she needs to be free from using the g-tube for 6 months before it come out. I think we're still quite a ways off from that.

Well, it's 31 for 21 - an attempt to get bloggers to post every day for the month of October which is Down syndrome month. I will do my best to post daily. . .

Buddy Walk Pictures 09

Having a little fun getting ready for the walk!

Beautiful blue eyes against the beautiful blue sky. It was a PERFECT day.

Chloe's friend Teighan. Teighan is also the proud owner of an extra chromosome! :)

Our good friends the Letterios.

Teighan and Sandi.

Lou and Sonia Baghdady, News Channel 8.

Tori, Sadie and Lou.

Terry and Timmy.

The Mini's

Vvvvrrrrmmmm. Babies, start your engines.

Ready to walk!

BFFs

The kids take a beach detour.

Chloe's Crew

Casey, Van and Finn

The walk was AMAZING! Chloe's Crew has raised $770 so far. Donations are still trickling in as they are welcome up through the end of the year. There were over $13000 people and over $88,000 raised by the start of the walk. More donations were expected. It was such a glorious day with absolute perfect weather. A special thanks to ALL our supportors! Donators and walkers. Dillon's mommy Melissa and Jax were never far from our thoughts as they're both needing prayers right now. Hope you'll send some their way too (you can read about them by clicking on their names above.)

Buddy Walk 09

So tomorrow is our first Buddy Walk. We're sooooo excited. Chloe's Crew is all ready to go. We have a team of 25 walking and we've collected over $600 in donations! :) Wooo hooo. And since donations can continue to come in until the end of the year, we're hoping they'll continue to trickle in. We also received our team t-shirts FOR FREE from the t-shirt company. I'll post their name and website, if they have one, once I have it. It's very amazing when people reach out to help others.

I'll let you know how it goes!!!

Prayers for Jaxson

Our little friend Jax is in the hospital and off to a risky surgery tomorrow. He is a VERY complicated case and his mom is very worried. Please say some extra prayers, send them some positive thoughts and mojo, or do whatever it is you do to help him get better and back home soon. You can visit his blog by clicking here. We're hoping and praying for you here Jax!!!

Sweet Ella Grace

Thoughts and prayers for our dear blogging friend Sweet Ella Grace! She has a bone marrow biopsy today to look for leukemia cells. Click on the link to see her blog and beautiful pictures of her (and hopefully good news about a clean biopsy). Spread the word. She NEEDS positive thoughts and prayers her way!

Back From Iraq

Obviously I haven’t just returned home from Iraq, but I feel, on some level, as if I have. Now I realize this comparison may seem extreme to some (especially my brother who has actually served over in Iraq), and I don’t mean to imply that the hardship we have faced is even CLOSE to the degree to which our nation’s heroes suffer during deployment, but what I am experiencing is like the psychological text book acclimation back into “the real world”. ‘What the hell is she talking about?’ you might be asking yourself. Well let me explain, for this blog is not only about my need to write and vent and do whatever cathartic expression I can to feel better, it is also a little bit of a window into my soul – a soul that is taking a journey of a lifetime.

The past few months have been intense for me. As most of you know Chloe’s health has had a nice gradual improvement for months now. While she has thrived, I have not had things so easy. I have racked my brain with how I could possibly be having a hard time NOW when we’re finally out of crisis. I started to realize I felt sort of “post traumatic”. But that didn’t completely describe how I was feeling. It got me thinking, though, more about war time and the transition from war back to home.

At times, watching your sick baby suffer or struggle wondering what will come next is in its own way, a constant war ground. Just trying to go through each day as if everything is fine just waiting to hear that not so distant enemy fire. But it hasn’t been the kind of war that leaves you in a constant state of physical threat. Rather it has been the kind of war that terrorizes your psyche on a daily basis. I think all humans have an ethical dilemma with attacking even the enemy’s children. Yet here I was on a daily basis, watching my child struggle to breath. Struggle to LIVE. I was living in my own war zone.

But now things are quiet. We’re back “home” to normal, or our new normal, that doesn’t involve weekly doctor visits and frequent trips to the ER. The suction machine is even beginning to accumulate dust. For us, the war is all but over. Chloe has been stable for almost 2 months now. A record amount of time without a single breathing episode. So what could possibly be my problem???? It’s like I said. I feel like I just returned home from war, back to normal, but things don’t FEEL normal. I’m not the same person. Things don’t feel the same anymore. And I’m left with that constant sense of guilt and confusion. There are people we have grown to love that remain in the trenches. . . over enemy lines. Even though I can’t help them when I’m there myself, there is some sense of togetherness that I can provide. Ridiculous, I know. But the truth. And I’ve learned to function in crisis. I’m having to relearn how to NOT be in crisis. And then when you finally start getting used to feeling good with your new normal you can’t help fight that feeling that you might have to go back after all. WHAT IF. . . What if you get called back to war. Back to that horrible place that although it has a sense of familiarity and you have glimpses of wanting to return, you REALLY REALLY can’t even imagine going back to that horrible place. In fact, really thinking about it can take your breath right out of your lungs. You watch the news waiting to hear of the latest battle. . . “swine flu”. . . “pandemic”. . . “children are particularly susceptible”. . . “children with underlying health conditions”. . .”death”. . . This is real world shit that I can’t escape, yet I have to. I have to take a deep breath and remind myself that we are home and we are safe and that no matter what the news says we’re not going back to that horrible place. But if we do. . . if we HAVE TO, ready or not, we will do our best and find the strength in our hearts and souls and the love that surrounds us, and forge on.

And to my little warriors out there that are still fighting the battle every single day my heart aches for you. I join your fight in my positive thoughts and prayers that I send your way. Hang tough my little heroes. You have AMAZING AMAZING strength.

A Test

Chloe's got the beginnings of a cold. I suctioned out some mucus this morning and there was NO gagging or breathing episodes! whooo hooo! So far so good. But this will be the test as to how she handles colds now. Wish us luck!

CHLOE SITS UP ALL BY HERSELF!!!!

We Have Lift Off!

Chloe in my new toddler program!

Playing in the sand pool with Sammy!

Chloe experimenting with shaving cream.

Chloe enjoys snack with her friends!

Number 2, Comin' In

Well, Chloe's 2nd tooth is starting to poke it's way through. It is in the same place as the other one, just other side. I'm actually starting to think they're eye-teeth and not molars. Those are supposed to be pointy and the one that's sticking out is REALLY pointy.

She did GREAT standing today. Really enjoyed it. Puts a big smile on her face. And therefore our faces as well! She sat on a stool for a long time too. I'm just so proud of her. I'll post pictures of her hard work soon.

Chloe started in my program on Tuesday. It's been a little bit of a weird transition for me. The other kids are so much bigger and "better-abled" and so now she's suddenly seeming very small to me. She just looks like such a baby. But the program (which is a toddler transition and preschool prep program) is so good for her. It is so great for her to be around other kids. And it's great for me to be working again! :)

As for 9-11 and all the posts, I too will NEVER EVER EVER forget. I chose not to post about it because I find thinking about it is one thing, but reliving it enough to put my thoughts down in words was not some place I wanted to go. Maybe next year. But for this year I chose to remember privately. I thoughts and prayers are for everyone who was affected.

NO MORE CPAP

Well, after all the frustrations we've been having with Chloe's CPAP machine, her doctor reviewed her previous sleep studies and determined that she can go without it because he believes she is just improving at this point and it isn't worth the struggle and frustration. Wooooooo hoooooooo! She slept in her crib last night with no CPAP stress. :)

Chloe does Bang Bang

She has a tooth!!!!

Okay, so maybe just the point of a tooth, but she's got one poking through!!! And true to Ds uniqueness it is one of her BACK teeth! Silly little monkey! It's a sharp little sucker too. Poor little thing. She's been crabby with hard poops, now a tooth and this is about when she should have a reaction to her last vaccines if she's going to.

More commando crawling! She is READY TO GO! Watch out!

New Legs

Check out the brand new legs (otherwise known as "orthotics", "AFO's" or"leg braces". They may or may not help her walk any sooner, but they provide her with the support she needs to stand which is what she should be doing developmentally. You can see the pride and excitement in her eyes when she stands with them on!
She LOVES standing! :)