Monday, July 18, 2011

Happy B-Day Hubby!

Averi went out with her man for breakfast this morning to celebrate his birthday.  They were both very annoyed with my taking their picture during their special moment. :)
Happy Birthday Sam.  Averi loves you!

Sunday, July 17, 2011

I Don't Need No Stinkin' Pump

We have slowly been adding more straw-sippy cup feeds into Averi's daily regimen (thank you Tang, you are my hero).  The goal is to have her drink four 4oz. cups a day, along with the baby food that she eats orally.

Guess what?  Yesterday, it finally happened!  She drank all 4 cups!!!  I swear, I thought this day would never come!

She was still short a few calories so we had to push an ounce of formula through her G-tube with a syringe, but we didn't have to hook up her pump at all for the entire day!  (I hope the !!! are relaying to you how big a deal this is!!!)  I am SO proud of her!  Maybe one day we won't even need that dumb day.

Saturday, July 16, 2011

Germ Fest...I Mean - Animal Day

Our neighbor's brother has a farm and we went to see his lambs today before they grow up and aren't lambs any more.  I know Averi looks pretty frightened in this picture, but she's really somewhere between intense excitement, extreme hesitation, and stimulus overload.
I was a mean mom and wouldn't let her touch any of the animals (lambs, cows, chickens, kittens) and I was sanitizing everything in site.  Do you think I'll ever back off on the sanitizer?  Anyways, being out and about really wore Miss Averi out because she fell asleep mid-color on the way home.
Funny note:  We stopped for lunch at a pizza buffet and the owner made a comment about "where's all her hair."  When I absentmindedly responded that "the chemo took care of it" he first laughed because he thought I was joking and then started apologizing profusely and explaining that some babies her age still don't have hair.  I guess MDS is such a part of our lives that I forget it's startling to see a baby with cancer. :)

After resting up, we headed over to the annual Down Syndrome Zoo Day.  It was super hot, even though it was in the evening, but my girls were ready.
We walked around for a while looking at all the animals and then headed over to the party.  Averi wanted to make sure that I pointed out that she and Kaili got their faces painted.
It might seem silly, but sometimes it's refreshing to realize that there are so many other people in a similar boat as you.  It's always so much fun to hang out with other families affected by DS and not have to worry about explaining anything, but rather share your stories with a sense of understanding.
After eating, we headed over to the carousal.  Things started out fine with Dan sitting on a stationary bench with Averi while Kaili and I rode the horses.  Then Dan got adventurous and sat Averi on one of the horses.  Of course she immediately grabbed on to the pole - probably the most germ infested item in the entire zoo.  Since she'd already touched it and she was having so much fun I let her finish the ride, but once it was done I immediately ran to the stroller and doused her in sanitizer.  Yah, that's probably not going to stop any time soon, huh?

She loved riding the horse and kept shaking the pole after the ride stopped, trying to get it to start going again.
To finish off the germ fest - I mean, fun time at the zoo, the zookeepers brought out some animals for us to pet.  Averi really liked the albino snake and decided to pet it for a while.  Don't worry, there was sanitizer for that too. :)
I know it keep saying this, but it was SO nice to be out in the fresh air doing things together as a family again - even if there were germs involved!

Friday, July 15, 2011

Scrub a Dub Dub

It's been a week since Averi had her central line taken out and we have been given the go ahead to take off her band-aids and give her a BATH!

On a side note, we were all making jokes about how much Averi would miss the dressing on her chest but we forgot to take into consideration the band-aids that would replace it for a while.  She keeps picking at the band-aids and pulling them off.  This scares me because I don't want the site to get infected while it is healing.  When the port is taken out the surgeon doesn't even stitch the hole closed so that if the site isn't completely sterile he doesn't close any germs in.  Luckily, the site is looking great and the scab is already getting smaller - just in time for a BATH!  (If you can't tell, I'm pretty excited about the BATH!)
When Averi's port got infected and they had to remove it (note the matching scar on the other side of her chest) there was a break of a little over a week and we were able to give her a bath the night before the new port was placed.  That was over 8 months ago.

I have really been looking forward to the day that we could actually wash off all the hospital/vomit/stuff instead of just rubbing it around with a wet disposable cloth that smells like men's aftershave - and the day finally came.  We didn't know how Averi would respond though, seeing as she hasn't even touched water for so long...
She had a BLAST!!!  She LOVED it!!!  It was so nice watching her enjoy herself while she splashed water all over the entire bathroom (and for once I didn't care).

We took a video of me putting her in the water for the very first time but forgot to take nudity into consideration :) so you'll have to settle for this very cute video of her splashing after warming up to the water for a couple of minutes.
Of course we like to keep things exciting in our house, so after about 10 minutes we saw brown mush floating up from behind Averi.  Let's just say that adding water to poop that already has colace and milk of magnesia added to it twice a day is super yummy.  After yanking her out of the tub, cleaning up the mess, and spraying the tub down with bleach, we put Averi back in the tub (with a little more water this time since she was having so much fun) and scrubbed her down.  I'm not gunna lie, I washed her several times over. ;)
I have to admit, there isn't much that's cuter than a clean baby wrapped up in a towel - and she finally got to use her hooded towel that's been hanging in the bathroom for months now.  I can't wait to give her another bath tomorrow! :)

Thursday, July 14, 2011


I don't know if you know this, but being stuck at home all day everyday can wear on you after a while.  I've had a couple of errands on my to do list for a while now and haven't been able to actually go do them because for some reason I can't leave Averi at home by herself. :)  Since everything went so well last night, I decided to give it a try today.  Yikes!

I'm not quite ready to take her on a full blown grocery shopping trip but I thought a few quick stops at a couple of stores would be fine.  My first mistake was forgetting the baby wrap.  With nowhere to put Averi (I was definitely NOT putting her in a grocery cart) I had to carry her the entire time.  I also couldn't push a cart and hold Averi at the same time so Kaili had to walk, while I tried to keep track of her, and I had to carry a basket.

When my arm started to get tired from holding so much I asked Kaili if she could carry the basket for a little while.  While she did put a valiant effort into it for about 30 seconds, it just wasn't going to happen.  Just as I thought it couldn't get any worse - Averi fell asleep.  So I had dead-weight sleeping baby in one arm, an awkward basket in the other, and no hand left to hold onto Kaili.

You should have seen me trying to pay for my 4 items at the checkout. :)  I think I'll be complaining less about my 10:00 at night shopping trips from now on, and I don't think I'll be taking Averi shopping again any time soon!

Wednesday, July 13, 2011

An A Fair of the Heart

Tonight was the annual cardiac celebration at the hospital.  Once a year the children's hospital puts on a huge party for all of their cardiac patients.  It is an awesome way to celebrate the second chance at life that many of them have been given through open heart surgery (like Averi) or any kind of heart care.  It's also a wonderful opportunity to see the doctors who performed the surgeries and thank them by showing them the fruit of their labors.

We went for the first time last year and had a blast!  When we got our invitation this year we only had one hesitation - taking Averi into a crowded room of germy people.  Since her port is officially out and her ANC is over 1000, we decided that only 'normal' life is ahead us and we ventured out of the house.

I'm not gunna lie, I was a hot mess the entire night, but I still managed to have fun.  We just held Averi the entire time and didn't let anyone touch her.  Depending on whether she gets sick some time soon maybe we'll start going out a little more. ;)

Monday, July 11, 2011

Good Riddance Honey Bear

We bought a new spoon and it is making a world of difference.  The short handle and pointy end make Averi hold the spoon correctly.  Now if we could only get her to stop flipping the spoon upside down when she gets it to her mouth. :)

We have also finally transitioned from the honey bear straw to a real big girl sippy cup with a straw.  I have been looking for months now for a sippy cup with a straw, handles, and no valve (the thickened liquid can't get through the valve).  So of course, Dan came home the other day with not one but 2 of these cups that he got for the price of one.
Averi has been really hesitant about using it because the straw is more squishy than the honey bear and she doesn't like the different feeling.  I decided that she was going to overcome that today and did some tricky maneuvering   I'd let her drink out of the honey bear for a while and then when she wasn't looking I'd sneak in the cup.  She'd take a sip or two and then give up so I'd switch back to the honey bear.  After doing this many many times, each time getting longer and longer, she finally finished her milk using the sippy cup.

I think I can officially say that we are done with the honey bear - and the weird looks it solicits. :)

Since a lot of things have been changing with Averi's eating skills lately, I decided to tinker with her feeding schedule as well.  Pretty much for forever she has been getting feeds at 8, 12, 4, and 8.  This is all fine and dandy when she gets everything through her G-tube, but she is becoming more aware of when we eat and she is eating more orally as well.

I decided to give her more of a toddler's schedule and decided to feed her 3 meals when we eat them and then a snack of milk after her nap and right before bed.  We'll see how it turns out, but I'm hoping it will help encourage her if she eats when she sees us eating.

I really feel like she's making a turn for the better, eating wise, and I'm getting excited!