Happy Easter!!!

Aside from my husband cutting off the tip of the bone in his finger, we've had a very nice weekend! Visits from cousins and some nice weather made for a great time. Here are some pics! :

Zach here from North Dakota

Sadie ready for Easter brunch



Handsome Xander

Xander with the Easter Bunny.

Chloe enjoying her brunch!

Sadie after the Easter Egg Hunt

Chloe

Peter with the kids at the beach.

Nana with the girls at the beach.

Where's Chloe???

Here are a couple of videos of Chloe playing peek-a-boo. Remember to scroll to the bottom to pause the music so you can hear the videos. Enjoy. :)

My First attempt at getting Chloe to play peek-a-boo


Chloe Plays Peek-a-boo

Blankies for Babes

Chloe snuggled up in her Blankies for Babes blanket when she was sick. It's like a hug from Jax and his mom Lacey everytime she cuddles up in it! It was especially nice to have when Chloe was sick. Please check out the Blankies for Babes blog and sign up to follow to hear about the special kids that are touched by this wonderful project - kids with special health care needs just like Chloe.

Our Beautiful Girl

Not feeling great:


But not bad enough to keep away one of those smiles!

A LONG Week

Well, looks like Chloe did have an ear infection because after about 36 hours on the antibiotic her fever broke. Unfortunately that wasn't the only answer to her whoa's. She's also had a nasty GI virus! And I mean NASTY. She's finally (FINALLY!) perking up since Friday, although she's now covered with a fine red rash! It just doesn't seem to end. I am, however, extremely thankful for her g-tube because we were able to keep her hydrated even though she wasn't taking ANYTHING by mouth and was vomiting with diarrhea for 5 days. She would have surely been hospitalized without it. She has been a sick little girl. She can use some positive thoughts even though I think we're past the worst of it. Thanks!

Poor Baby

Well, the pedi thinks Chloe has an ear infection. I say "thinks" because he couldn't visualize her ear drum very well, but he said it all looked consistent with an ear infection. So she started antibiotics this evening. She was pretty good at the doc, smiling and hanging out, crying with vigor during the exam, then smiling when we left, but then she fell asleep in the car and it's all been down hill since then. She was running a fever again this afternoon and has been either crying or sleeping. I haven't seen her this sick in a long time. But she's breathing comfortably and tolerating some feeds, so I think she's just feeling lousy. The next 48 will tell us a lot (whether the antibiotics work or not). I'm hoping all the sleeping is just her sleeping it off. She'll get some extra snuggles from mommy tonight, that's for sure!

Waiting for the Fever to Break

The video is from Saturday night of Chloe lying in her crib, breathing hard with a high fever. Last night was a repeat with more vomiting, dry heaving and diarrhea, along with a nice fever of 104. Got her temp down this morning with Tylenol and Motrin. We're off to the doc at 11 to check her ears and lungs.

Sick Baby Girl

Chloe got the stomach bug last night. She seems to be a little better this morning, although she hasn't had anything to eat. I just gave her her meds, so we'll see how those sit. She's 102 and has a rattley cough. I'm putting a call into the pedi this morning to help me determine what to do about tube feeds and the rattly cough. She's a trouper though and other than that cough, I'm not too worried.

Chloe helps with laundry!!!

yes, that's underwear on her head!

Chloe's first 9 weeks at OneTrueMedia.com

Here is the first montage of Chloe's first 9 weeks, pre-heart surgery. Remember to pause the music at the bottom of the blog before playing if you have your volume up so you can hear the music.

Make video montages at www.OneTrueMedia.com

Chloe cough

Chloe's got a croupy sounding cough, but so far so good. :) Finger crossed.

I've been working on a montage of Chloe's first 9 weeks. I'm just so impressed by how far she has come in the last year. It is TRULY amazing. She is a strong fighter. I'll try to post the montage on the blog. It's a little long, but boy what a journey. Hope you enjoy. (assuming I can get it posted! LOL)

We'll Take It!

So Chloe wasn't exactly "discharged" from the pulmonologist's service, but her sleep apnea HAS dramatically improved and we don't need to repeat the sleep study (assuming no symptoms arise) for another year! Woo hooo! He DOES expect that once her tonsils and adenoids come in her sleep apnea will get worse again (she does still have it but withOUT desaturations in her oxygen level and withOUT changes to her vitals - that's ALL good). So the next step will be to take out her tonsils and adenoids and then continue to monitor her to determine if she'll need to utilize the cpap again, but for now she is officially OFF OF CPAP. Another wooo hooo! She's come a long way baby!

Off to the Pulmonologist

Well, today we're off to the pulmonologist for what I hope to be her last appointment with him for a long time. I got word from her supply company that they got discharge orders for her CPAP so I guess the sleep study results were good! I'll get the official word today at our appointment. Don't get me wrong, I LOVE this doc and look forward to appointments with him, but that's more of a personal thing (tee hee, if you get my drift), but I'm all for checking another specialist off Chloe's list. I mean she has 7 after all! So off we go today with high hopes of some good news. I won't expect anything less!

Into the Light

I’m not even really sure where to begin, but I thought it was important that I write a little bit about what’s been going on with me for the past year. I have somewhat recently started my ascent out of a deep dark place – depression. Last spring after experiencing some sort of virus that was complicated by my fibromyalgia I suffered some EXTREME fatigue. After weeks of wondering how I could possibly take care of my children I finally broke down. This accumulation of anxiety and stress lent itself to 4 days in bed, nurtured and cared for by my wonderful husband and mom. Depression, no matter what its source, is a dark place to be. At my worst, even the presence of my beautiful children wasn’t enough to pull me from its depths. For many who will read this, depression just isn’t something that can be understood. I get that and accept that. But for some, even if it’s only one person, a sense of familiarity will ring true. And this is why I write. If the loneliness that is depression can be relieved even just a little to someone reading this then it will be worth having put the words down for all to read.

This past year of struggle was also heightened by the complicated nature of caring for a child with special health care needs. For me, Chloe’s rise out of constant crisis left me with a bit of post-traumatic stress. I was just exhausted and fatigued from all the worry and constant state of heightened fear for Chloe’s health. When she was better, I suffered from two emotional problems: 1) what to do with myself now that she was better and my psyche had adjusted to living in constant stress and 2) the decrease of adrenaline once the heightened stress subsided, leaving me open to the post-traumatic stress. So take the physical virus, the emotional component of caring for a child with special health care needs, and the constant financial stress related to Chloe’s care and you have the makings of a perfect storm.

So many times over the past year I sat down to write, but each time the darkness overtook me and the words just didn’t flow. Or they did, but they were from such a sad place I didn’t dare post them. I write now, as the storm passes and through the clouds I can once again see the glimpses of light. I can look into my children’s eyes and feel warmth and true joy and laugh ALONG with them. I can feel hope for my family AND myself and know that everything is going to be okay again. I can know with confidence that Chloe is going to be okay, at least for now and that the simplest cold is no longer going to threaten her life. I can watch my older children rolling around with her on the floor and not worry about how they’re going to handle the stress of yet another trip to the hospital. I can accept and enjoy the comforting embrace of my husband or the sweet tender kiss on my cheek from my mom. I can FEEL the warm hug from the sun as it shines through my window. I can laugh. I can cry. And most of all I have hope again. I feel lucky to once again emerge out into the light.

I hope that if anyone else out there is struggling with depression that they will know they are NOT alone. And that every struggle we face, in the end, makes a stronger, better people.

Puttin' On the Pounds!

So Chloe weighed in at a whopping 19lbs 6oz last week. I'm so proud of her. That's over a pound in a month! She's now 70th percentile for height and about 20th percentile for weight (up from the 5th). That's on the Ds chart. She's right in with the rest of the family. Tall and skinny (well, as kids anyway!) I think I'm going to cut out one of her daytime g-tube feeds since she's obviously eating really well. I found that she'll actually take some milk too if I don't do that feed. Yesterday she took 5 ounces and today she took 4! So I'll cut out the 6 ounce feed and give her any ounces she misses in the day at night. I'm very excited. It's a big step.

A Night at the Museum

Every year I get to enjoy a special night with my son Xander as we sleep under the dinosaur bones at the Peabody Museum for Dino-Snore. We go each year with our good friends Ashley, Jaycob and Khalid. Here are some pics. Enjoy!

Mommy and Xander


Ashley and Jaycob.

Buddies!

Her Face

Thought I should post some pictures of her face since the last post was of the back of her head! LOL These pics were taken by my four year old. Pretty good, huh?

Naptime

How Chloe routinely falls asleep! OUCH.

Pale Feet

Do any of your kids with Ds (or without) get REALLY pale feet? Like NO color at all pale? Chloe will occasionally get these white feet and it's very weird looking. I'm going to email our pedi, but I thought I'd check with my blog friends first. :)

Taking a Stand

Not me, Chloe! She pulled herself to stand ALL BY HERSELF today at the couch. Of course I wasn't there to see it! But she did it for her Nana (my mom) so that's good. Nana was so excited she could hardly contain herself! I'm sure I'll get to see it soon enough and probably over and over and over again ;) LOL

Sleep Study #5

Pre-sleep study - the calm before the storm.


During sleep study, but ALMOST done.


All done and ready to go home!!! :)

Chloe had her 5th sleep study last night/this morning. She was a REAL trooper. She hated getting the stuff all stuck to her and cried as she lay between my legs in the crib (yes, I was in her crib with her!). It took her a good 2 hours to get settled into a comfortable sleep, but once she was good and asleep she pretty much stayed that way! YAY for Chloe. Last sleep study was NOT so pleasant! She was happy to get it all off this morning and get back to her home, her family and her friends! It'll be 2-3 weeks before we get the results, but this was basically a baseline so we don't expect anything startling. We know she has OSA (obstructive sleep apnea), it's just a matter of the degree now that she's older and bigger (18 lbs, by the way!!!!!). She definitely SEEMS better to us and hasn't been on the CPAP since this summer. Fingers crossed that it stays that way!

In Over My Head?

I think I'm in over my head. Not in having a child with special needs, but in having THREE children! I swear, give me two, and it doesn't matter which two, and I do great. I can work them together nicely. But throw in a third and it all goes to hell! I'm hoping it's just the current ages. 9, 4 1/2 and 17 months. If my attention is on the little one and the two big kids are together it's sure to lead to a breakdown (evenutally a breakdown of MY mental status)! So what's the answer? Get rid of one??? But which one??? I'm awfully fond of each of them individually. So I guess that's not the right option. Keep them separate? Man, I TRY, but there always seems to be that time in the day when they're all three together. I just keep trying to tell myself "this too shall pass" and we'll get into to rhythm that keeps me from killing them (just kidding - ummm. . . , yeah, no, I was kidding) Spring will undoubtably help, but that's too far away to count on that. Any advice anyone?????

Baby Steps

Yup, that's what Chloe took today. Literally. She took baby steps. You know those ones that babies take when you hold them up and they "stand" and take those sort-of "fake steps"? The ones where they don't really support their weight, but they bear SOME weight and those little legs move in a walking pattern. That's what she did. She had her leg braces or AFO's on and her big clunky sneakers and I held her up as she "walked" across the room. Now you have to understand, usually when I hold Chloe up she holds her legs up. In fact she does whatever she can NOT to put them down. She usually holds them up at a nice 90 degree angle. But today, after working with her new OT Tammy yesterday on some new weight-bearing exercises, her legs seemed to be "woken up" to this new skill. "NOW we know what to do", they seem to say. I'm excited. You can probably tell. They were the most beautiful baby steps I've ever seen.

First Born

Happy Birthday to my first born, Xander, now 9 years old! It's hard to believe how quickly 9 years can just whiz by. I find myself at a loss for words on this meaningful anniversary of the birth of my first child. Maybe when my head is clearer I can post a little something more about this special young boy. Until then, enjoy a picture of my handsome young man.

Jaxson's Fight

Please send positive thoughts and prayers out for my good blog friends Lacey and her son Jaxson. Jaxson is very sick and needs all our positive energy coming his way. Read about his fight at Jaxson's Fight.

The Evolution of Crawling

CHLOE CRAWLS COMMANDO-STYLE


A MORE IMPROVED COMMANDO


UP ON ALL FOURS!

Doing GREAT!

I think I already posted this picture, but I wanted to post it again. :)

Well, I thought I'd better post since Chloe is doing really well right now. She's just starting to show signs of a new cold, but I wanted to post since she has been germ free for a few days now and I'm just so excited. This has been a tough season for colds and viruses, but all in all she's toughed it out just fine.

Chloe had PT today and with very little assistance she climbed up 2 flights of stairs! Go Ms. Chloe!

Feeling Better

Yesterday was a long tough day for little Ms. Chloe. She was either lying on my one of us, sleeping or crying in pain. It was not fun to watch. But today is MUCH better. She's tolerating feeds now and is up and crawling around again. It seems the worst of it is over. Thank goodness.

Watch and Wait

Chloe threw up at 12am and then had diarrhea again at 3:30am. So now we watch and wait. . . She's pretty lethargic this morning. Hasn't peed yet. I'm going to give her her morning feed at a slower rate and watch and wait. . . Hopefully the end is in sight and she'll be feeling better soon!

Ahhh, relief

I'm feeling some relief since I got caught up on posting pictures and videos and the laundry is sorted and ready for attack and the Pixos are finally collected and put away (you'll understand if you have Pixos!). It feels good to get at least a few things done.

Chloe continues to have intestinal upset. She hasn't eaten a single thing all day until now (7pm), has taken 2 naps and has done a lot of lying around and complaining. Not our usual Chloe. She's getting her tube feeds though (THANKS GOODNESS for that!) and is hanging in there, so we're not worried (especially now that she's actually hungry). I'll post again if anything changes.

Videos

Chloe Crawls


Chloe Dances and Crawls

Happy New Year!!

Matching girls bring in the New Year!


Happy New Year Stacey and Xander!


Waiting for the ball.

Sadie as the ball drops and the clock strikes 12:00:00!!!

Handsome Xander as stick boy for the New York Rangers.

Happy boys!

Sweet Chloe outside.

Christmas Pictures - Better Late Then Never

Xander and his snowman.


Decorating the tree.



Sadie.

Decorating the outside of the house.

Chloe and Xander.

Chloe in a Christmas outfit in front of the tree crawling away!

Beautiful Sadie in her new princess dress.

The family (minus Xander) at dad's Christmas Eve party.

Chloe with Aunt Sarah and Uncle Dante.

Touchdown.

Beautiful girl.

Chloe loves her uncle!

Daddy and his girl.

Mommy and her big girl.

Nana and Sarah at dad's Christmas Eve party.

Macy and Sarah.

Cute Chloe opens her presents.

Chloe and Uncle Mont. Time for snuggles.

Macy and Sadie at Xander's Christmas hockey tournament.

Stacey and Chloe at Xander's game.

Xander and his love.

Leaps and Bounds

Well, I'm off work today with Chloe who's had 2 diarrheas this morning and has spit up 2ce and Sadie who also had an "accident" yesterday at school. Better safe then sorry with all that's going around. I don't want to risk exposing anyone else. So, I'm going to try to take some time today and catch up on my blog.

Chloe has been doing so much lately. I'm not even sure where to begin! I have video, which I'll be posting soon, it's just on my "old" computer (I got a new one for Christmas - sooooo exciting) so it probably won't happen today. Chloe turned 17-months yesterday so this seems a good time to do an update anyway.

So let's see, Chloe's health first. She's had a cold off and on for months now, but it never turns into anything, so I look at every day as a constant reminder of how strong she's become and how great she's doing. And how glad I am that she's gotten the RSV vaccine along with the seasonal flu and H1N1 vaccines. It's worth all the pokes! Chloe's sweet friend with Ds and repaired AVSD (same heart condition Chloe has) just got out of the hospital after about 12 days from RSV. We are counting our blessings!!!! (and so glad he's finally back home and doing better!) Chloe's still primarily feeding through her feeding tube. She just isn't too interested in drinking liquids from anything (bottle, cup or straw), but we continue to try and work with her and hopefully one of these days it'll just click. So in the meantime, she eats her solid foods 3-5x a day and gets 2 bolus feeds and 1 continuous feed per day. We assume she's growing since her weight hasn't been checked recently, but she'll go to the doc tomorrow and hopefully he'll plop her on the scale (I'm sure he will). She hasn't changed clothes size so I'm interested to see if she's still gaining. Having diarrhea and spitting up can't be helping! Oh, and I almost forgot to mention that she's getting about 5 teeth right now!!!!! She'll have 8 when it's all said and done. Her four molars and then the 4 front teeth - 2 top and 2 bottom. The could be the reason for the diarrhea, but I'm taking any chances because other kids have it. Her front tooth that's coming in is a jagged sharp dagger! WATCH OUT! Yikes!

Developmentally Chloe has been making some tremendous strides. She is now crawling on all fours perfectly, climbing up the step in our living room with ease, working on going up a few stairs, pulling up to her knees on EVERYTHING, feeding herself with a fork and spoon (with help and with quite a bit of mess!), expanding her babbling sounds to include "mama" :) , signing "more" and making gestures for Itsy-Bitsy Spider and Twinkle Twinkle and Row, Row, Row Your Boat, and pointing to her our noses and then her nose when asked. It's all so very exciting!!!!!

The other kids are doing great too. We put a backyard hockey rink in and Xander is enjoying being able to skate every day. Sadie is learning to skate and that is exciting for her. She's really taken to it right away. Sadie goes to PreK 3 days a week and loves it once she gets there and Xander is enjoying 3rd grade and all that brings (including girlfriends and break-ups and 8-9 year old drama)! Sadie is loving ballet and tap and Xander is busy busy busy with hockey 3-5x per week!!! He's even tried out being goalie for awhile (and discovered it's NOT his favorite thing! LOL)

Me, I'm hanging in there. Doing better then I've been doing and able to enjoy my kids and all that is going so well for them. I miss my step-dad every day and still find myself in disbelief of the whole thing (we lost him suddenly back in October). Our finances are still a mess and our living situation remains up in the air. I don't blog very much because in general I'm overwhelmed and can't find the time or the mental energy. But like I said, I'm starting to feel better so hopefully I'll be on the upswing now. And finding the joys in my children's lives keeps a smile on my face and gets me through the days. I hope to be able to get back to blogging regularly. I miss it.

Thanks to everyone for your continued support.

Proud Mama

That's my boy holding the first place Mite B trophy after winning a Christmas tournament in Rhode Island last weekend. This is Xander's first tournament win so he was thoroughly excited!!!! He got to spend today at the Ranger's game at Madison Square Garden as the "Stick Kid" after Stacey was randomly selected for 2 tickets and the "Stick Kid" experience from Blue Shirts United fan club. Hopefully I'll have a pic or two to post after they return. :) It's been quite a week for my little man (8 years old) and my big man too. Merry Christmas and Happy New Years boys!