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. . .