Friday, December 25, 2009

Merry Christmas

To all our friends and family we want to wish you a very Merry Christmas. Chloe's enjoying a nice little siesta while we take a break from present opening (Santa first, then family stuff later - these blended families are complicated). :) Hope everyone is enjoying the holiday season and getting time with special loved ones. Very merry. . .

Tuesday, December 22, 2009

For all the heart moms, this hits the nail on the head!

You passed me in the shopping mall...(You read my faded tee)
You tapped me on the shoulder...Then asked...`"What's a CHD?"
I could quote terminology...... There's stats that I could give...
But I would rather share with you...A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I help her grow strong...
It's making a hospital...home for awhile...
It's seeing my every smile.
It's checking her the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's her nails look blue?
It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...It's changed our family...
This is what we face each day...This is...a CHD

Thanks to Samantha Lloyd for sharing this!

Wednesday, December 16, 2009

So Lucky

A good friend of mine is fostering a sweet little girl who is eight months old and I was having one of those moments as she crawled circles around my 16-month-old Chloe. She easily pulls up to stand and gets around with such ease. I was looking at the little girl with a pang in my heart for Chloe, who struggles to stand and although gets around quite well, doesn't have the ease that typical children do. With some hestitation, I mentioned my feelings to my friend. "Chloe's the lucky one" she said. "She gets to be with her family who loves her very much and cares for her". So true. Chloe IS the lucky one. She may have troubles but she DOES have a family that loves her so very much and IS there with her every day. She has a family that would die for her and no one is here telling us we can't be together. I am so thankful to my friend for putting it back into perspective for me. I hope I will not waste another moment feeling sorry for Ms. Chloe, as she is amazing just the way she is and together our family is complete!

Wednesday, December 9, 2009

Choo Choo - Train Pics!

All hooked up to her feed and cozy in her seat on the train! All ready to go!

Xander with his new IPod Nano.

Me, Chloe and Xander, all so happy we're on the train and not in the car!

Me and mom (AKA "Nana")

Chloe getting some "crawling time" on the seat.

Xander passed out on our luggage listening to his IPod!

Uncle Phil and Brooke meeting us for dinner in the train station!

Great Nana and Chloe share a very special moment.

The whole gang (with Xander behind the camera) at the Smithsonian National Museum of Natural History.

Sick again. (but still darn cute)

Daddy and Sadie comfy on the train home.

Chloe fast asleep. She slept about 3 hours on the way home. Woohoo! :)

Tuesday, December 8, 2009

So Far So Good

So Chloe has pink eye and a bad cold, but we THINK her ear infection has cleared. Hard for the doc to know for sure since he couldn't actually see her ear drums. He said to keep an eye on her and if she starts showing signs of being uncomfortable or sicker then we'll go to the ENT to have him take a look. She slept from 7:30pm til 10am, albiet restlessly, so I'd say she's definitely fighting something, but she's been a happy little girl all day, playing with no nap. So I'm not worried. Just another annoying cold I think.

Sunday, December 6, 2009

Sick Again

Argh! She's sick again! We were up off and on all night with her tossing and turning and occasionally crying. NOT like her at all - she's a GREAT sleeper. We gave her Motrin at around 1 and at some point last night she started running a fever again. I was anticipating a bad trip on the train today, but then she after some Tylenol on top of the Motrin, she perked up. We've been up since some time after 5, but she's been happy since about 6:20am. Hopefully she'll be able to sleep on the train. It's a 5 1/2 hour ride so I'm hoping for the best. The trip down was amazing, so I'm hoping for a repeat, but I'm cautiously optimistic. Wish us luck! ;)

Saturday, December 5, 2009

Down in VA

Well, here we are down in VA for the weekend. It was a successful train ride down. We got GREAT seats at the end of the train with plenty of room for Chloe's stroller and for me to maneuver around for her tube feeding. (thank goodness for that!) She slept for a bit, but spent most of the time awake wanting to crawl around on the floor. We kept her up on the seat and gave her a small little area on the seat to play around on. All 3 kids did great though and I got some cute pictures that I can't wait to share.

Xander was adorable today driving around DC seeing the sights. "This is the best vacation of my life!" he exclaimed at one point. And after driving through the snowy streets of DC we spent some time in the Smithsonian National Museum of Natural History. Xander was totally in his glory today. My 92 year old Nana joined us, so it was a very special day for us. I got a cute picture of her holding Chloe's hand this morning. Like I said, I've got some great pics to post when I get home.

It's hard to travel with a kiddo with a g-tube. I forget about the demands of her schedule and routine when we're not at home. It's so hard to be out and about and get her feeds in. But we're doing the best we can and we'll be heading back on the train tomorrow so it's only a few days of discombobulation. I don't know how my friends with more complicated situations do it! I'm always impressed by them (you know who you are - wink wink). :)

We're thinking of dear Sweet Ella Grace and her family as they wait for test results. Say a prayer for them.

Monday, November 30, 2009

Getting Better

Chloe's cold / ear infection has gotten much MUCH better. She still has a nasty morning cough, but her eyes and nose have cleared up and she doesn't seem to be so bothered by her ear. Phew! ;)

Therapy is going well. She has started doing some "floor transitions" (going from belly to all fours to sitting) with her braces on. That's a HUGE step. She's only been using her braces for brief periods of standing , but now she can start to wear them more often and eventually when she can pull herself up, she'll wear them most of the day so she can walk. I know, slow down, she's got a WAYS to go before walking, but obviously that's the ultimate goal.

Her g-tube is leaking a lot lately and I think it might be time for a bigger size. We go to her pulmonologist tomorrow for a routine appt and I'm hoping surgery can squeeze her in too to look at her g-tube. A leaky g-tube is no fun. ewwww! I'm also scheduled to talk to a nutritionist on Thursday so we can make a plan to maybe, hopefully, someday start to wean her from the g-tube. I'm looking forward to working with her.

Well, Stacey and I are off to a Rangers hockey game tonight with the two older kids. We couldn't be MORE excited. Stacey (my hubby) said trying to sleep last night was like that Disney commercial - "I'm too excited to sleep!". It's Rangers/Penguins and Stacey is a huge Rangers fan and Xander is a huge Penguins fan. I'm a Rangers fan too, but not quite as big as Stacey. No matter what it's a night out with the kids so I'm thoroughly excited. :)

Friday, November 27, 2009

Thank you

Well, it seems as though a blog of thanks is appropriate at this time. So here goes. my top 10 things I'm thankful for, in NO particular order. . .

I am thankful for. . .
*my blog friends who support me no matter what is going on
*my family (that is really about 20 thanks in and of itself, but for breivity sake, I thought I'd just sum it up into one)
*Chloe's health as of late
*my friends who still love me even though I've been an anti-social depressive lately
*all the "things" in my life that I am lucky enough to have
*despite our financial hardships still being able to put food on the table
*having a child with Down syndrome - I'm not thankful that Chloe has Down syndrome, but that I got to have a child with Down syndrome, because Chloe is very special, in part because of that extra chromosome. Does that make sense?
*the sun and beautiful days
*having the most perfect husband in the world for me. He makes me feel special and important and supports me in a way no one else could.
*all the special relationships in my life, in particular the relationships I have with my mother and my kids (for now anyway, I know in the next few years they will probably hate me LOL)

okay, that's 10. I could go on, but who wants to read about all the things I can think of to be thankful for! haa haa. I bet you if I sat down and put my mind to it, I'd come up with 100's. Ranging from life to the beach to snow to flowers to advances in medical technology. Maybe it would be a good activity for me to do. I could use some good positive thinking for myself! I invite you to join me and see how many you can come up with. I plan to print and post my in my bathroom to start my day with.

Love to all and Happy Thanksgiving!

Wednesday, November 25, 2009

Chloe update

Looks like Chloe's got a good ol' ear infection. Lungs sound good. And once again she's handling this cold like a champ. None of the scary stuff we'd gotten so used to. :) Thank goodness.

Chloe's Cold

Well, early this morning (3am) Chloe spiked a fever of 104.5. She was breathing very rapidly, but Motrin brought her fever down and that seemed to help her whole system. she's got a cough, but is still in pretty good spirits. We're off to the pedi at 2:45 to have her checked out. I don't expect anything dramatic, aside from it's an upper respiratory infection. . . we'll see and I'll keep you posted. And hopefully we'll all get some sleep tonight!!!!

Monday, November 23, 2009

Bad cold

Well, now she's got a cold with stuff coming out of everywhere. She's remaining in pretty good spirits though and so far so good with breathing! Phew.

As for the shiner below, I guess I may have purposefully omitted the "how" because I banged her head on my knee when I was holding her and went to sit down!!! Talk about feeling terrible! Now that she's mobile she's got all kinds of bumps and bruises!

Saturday, November 21, 2009

Our Little Rock Stars

(you may need to pause the music at the bottom of the page before viewing, if music plays automatically when you're on the blog)

Chloe rocks out to some Nickelback. Check on the air guitar in the middle ;)

Sadie, our now 4-year-old, sings us an original demonstrating her 3-year-old angst.

Friday, November 6, 2009

Keeping Busy!

This is how Chloe is keeping busy these days! Look out, we're in for it!

Thursday, November 5, 2009

Wednesday, November 4, 2009

A Quick Fix

Well, turns out that soy milk only has 100 calories per 8 ounces whereas the formula she was on before switching at the magic age 1 was 100 calories per 5 ounces. BIG DIFFERENCE, right? You bet! Soooo, we have her on toddler soy formula and after only a week she's already putting the weight back on. AND she's got more energy then she knows what to do with. She's scootching all over the place and doesn't want to sleep because she's too busy moving! Glad that was a nice quick easy fix!

Saturday, October 24, 2009

Did I forget to mention????

I think I forgot to mention that my husband broke his foot yesterday! Poor guy! But on a brighter note, Xander does NOT have the flu! PHEW!! He did have a rough night though, spiking a HIGH fever in the middle of the night. Poor guy with his little heart racing a mile a minute and his fast, deep breathing. I just wanted to wrap him up and make him all better! Well, a dose of Motrin and his fever came down and after soaking the bed he seems much better now. Let's hope that was the worst of it.

And on the brightest note of them all, our family is here visiting us from North Dakota. My sister-in-law and her kids have been a HUGE help around the house and with Chloe and have just brightened my day with their presence. It makes me crazy that families are so spread across the continent (and world!) in this generation. I want all my peeps right her around me! Life would be so much fuller. BUT I'm thankful for the time we get anyway, no matter how little it is, it is better then nothing and worth the wait!

Friday, October 23, 2009

Enough Going On to Keep Us On Our Toes

Well, nothing drastic going on, but enough to keep us on our toes. I took Chloe in for a weight check and my instincts were right - she's lost weight. The doc didn't have her chart so we couldn't look at her on her growth curve, etc., but from memory I believe she was 16lbs 7oz at her last appt, which was 8/24, and she was 15lbs 12oz today. So for now, the plan is to switch her off the soy milk and onto a soy-based toddler formula with 20% more powder then it calls for and olive oil mixed in any pureed food we feed her. She sees her heart doc and her thyroid doc this week so we'll get those bases covered. And in the meantime this week I'm going to try to find a good nutritionist to help us have a plan for the transition off the g-tube - even if it's long term, I'm just ready to have a plan now.

Chloe got the flu shot today, Sadie got the H1N1 nasal spray and flu shot and Xander couldn't get anything because he's sick with "flu-like symptoms". Xander got a nasal swab so that we could rule out H1N1 for him (he came home sick from school on Thursday. No fever at the nurses office, but had one by the time he got home). Doc started him on Tamaflu until we have results tomorrow. If he does have it then he'll put Chloe on it prophylactically. We're not too concerned at this point.

As for me, I'm starting up with my round of doctors again. Chronic fatigue syndrome is being talked about now. I have fibromyalgia which is more pain then fatigue, but I haven't had symptoms for quite some time (it comes in "flare ups"). I had some sort of nasty virus in April and then never really recovered. I had some EXTREME fatigue in April and May and it has gotten somewhat better, but I still can't manage the house. Hopefully we'll get to the bottom of my illnesses soon so that I can take care of my children and family!!!!

As always, thoughts and lots of positive mojo are heading out to Jaxson tonight. Hang in there little buddy and your mom too! I love you guys out here in virtual world.

Sunday, October 18, 2009


So much for posting every day. I should have known I couldn't keep it up with everything going on, but I thought I'd try. Anyway, Chloe continues to drink from a bottle most days. She's sporadic about it, but most days takes something. One day she drank a total of 10 ounces! :) She STILL has her cold, but it doesn't seem to be doing anything much. Just lingers on and on. She's a trouper.

My step-father's memorial service was last Sunday. It was absolutely perfect. He would have loved it. Actually, I think he DID love it. The doors blew open right when the service started and then again when the service ended. He didn't have time to hang around because the Giants game was coming on. ;) I feel his presence is strong and I know other family members feel that way too. It helps a little with the great feeling of loss. The service was so amazing. The sun was shining outside and the people that spoke all made us laugh and cry and reflect on an amazing life. It was truly a celebration of who he was and the legacy he leaves behind. I am so proud of my family for the way we've stood together through this tragedy and feel so lucky to be a part of something so special. In this day of blended families, we are lucky that ours is so strong. I love you all!

Thanks to everyone who has reached out to me and to us. All the support we've received has been so important.

Thursday, October 15, 2009

She Did It AGAIN!

Another 6 oz bottle last night so 1 less feed! wwwwwwwoooooooooooooohhhhhhhhhhhhoooooooooo!!!! :)

Monday, October 12, 2009

HUGE Milestone

Last night Chloe drank a full 60z bottle!!!!!! First time EVER. She's never had more than 2 ounces by mouth. It was so exciting! She got to skip a tube feed! She took 3 1/2 today so far. GO CHLOE!

Sunday, October 11, 2009

Another Day

Well, it's another day. . . another day since my step-father passed. Almost as if a new life has started since that day. It's one day at a time. . . one moment at a time. I missed posting yesterday as it was a busy day. My son Xander had a hockey game - their first WIN of the season - wooooo whoooo! I know Bah-Pah was looking down on him beaming with pride. He was a big hockey fan and an even bigger Xander fan. Then from the game it was a mad rush to the funeral home to stand in line for 3 1/2 hours as people came and paid their respects. WOW. All those people sharing stories of a wonderful, funny, caring man. It was amazing. And my mom held up like a rock. No surprise there. She is, always has been, and will forever be my hero.

As for today, we will say our "final" good-byes (as if we will ever be done saying good-bye) at the memorial service. It is planned at his favorite county club, with some of his children and grandchildren speaking, in a room with many windows to let in the light of a day designed not for saddness, but for celebration. A celebration of a life that although was cut too short, was one to be remembered with joy and laughter, as Sam (aka Bah-Pah) would have wanted it that way.

Friday, October 9, 2009

On a Brighter Note

Chloe has a bad cold. So why, do you ask, is that on a brighter note? Well, for those of you who have been following Chloe's story for awhile will know that only months ago a cold would likely result in scary breathing/choking episodes where her tongue and lips would turn blue and we'd have to suction out the mucus so she could breath or she'd vomit to clear her own airway. And on occasion, we'd end up in the ER. So for Chloe to have a cold and just "have a cold" I am delighted. I never thought I would find such satisfaction in my child having a cold. :)

Thursday, October 8, 2009


Well, yesterday was hard just as expected. But through the heartache and pain we find comfort in each other's company. Through the tears we also find laughter and joy in Sam's memory. We are doing our best to focus on celebrating his life, even though our hearts are breaking from our own loss. Thank you to all of you who have reached out to us through your comments, thoughts and prayers.

Wednesday, October 7, 2009


Today we will go view my step-father's body. My own body feels like an empty shell today. All except for my aching heart. We will take our kids, who have requested to see him. We want to give them that right. This will be a very difficult day. A day we must say good-bye to a VERY special warm compassionate funny man. A piece of each of us will leave with him. That is not an easy thing to bare. So say a prayer for my sweet step-father Sam, so that his journey may be a peaceful one, and say a prayer for us so that we may find strength in the character of a man who will forever live on in our hearts.

Tuesday, October 6, 2009


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

Saturday, October 3, 2009

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!

Friday, October 2, 2009

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. . .

Thursday, October 1, 2009

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. . .

Sunday, September 27, 2009

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!


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.)

Friday, September 25, 2009

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!!!

Thursday, September 24, 2009

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!!!

Wednesday, September 16, 2009

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!

Monday, September 14, 2009

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!

Saturday, September 12, 2009

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.

Wednesday, September 9, 2009


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. :)

Wednesday, September 2, 2009

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!

Monday, August 31, 2009

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! :)