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. :)

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!

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!!!!

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!

Her first shiner!

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.

Life is good!

Keeping Busy!

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

A Little Halloween Puppy

Look at this cute puppy I found wandering the streets of Hamden. ;)

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!

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!

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.

Oops.

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.

She Did It AGAIN!

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

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!

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.

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. :)

Comfort

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.