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 G-tube...one 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!
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! :)
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!
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. ;)
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!
The End has finally arrived. Averi had her central line port taken out today!
We woke up early today for what should be her last trip to the OR for a very long time. It's funny, but we know one of the OR Nurse Practitioners by name and she always comes in to say hello and check up on Averi when she has a procedure done. She was SO glad to hear that we were finalizing the last step in being done with chemo.
I can't say that I'm going to miss this thing even a little bit. It has been more hassle than necessary and I am so glad to be rid of it and the worry of infection that goes with it.
Averi, on the other hand, is really going to miss having something to play with all the time. She is a 'taggie' kind of girl and loves that the dressing is always attached to her so it is easy to find and fiddle with. We've been joking about what she will do once it's gone.
Our wait ended up being a little longer than expected, so we enjoyed some cuddle time. Of course Averi was asleep by the time the nurse showed up to take her away.
Thankfully the procedure didn't take very long and the anesthesiologist was able to mask her instead of intubating (I always push for that now because she does SO much better with recovery when she hasn't had a tube shoved down her already wimpy airway).
The only big concern I had about today was the fact that they would have to start an IV and I remember all too well the time she came back from the OR with 14 holes. When I brought it up with the anesthesiologist he said they would try a few times and then possibly put one in her head. I told him I was totally fine with that and understood that even though they look horrid, they are easier to place and just as effective (and they wouldn't even have to shave a spot). Well guess what? After a few pokes they put it right on the side of her noggin. :)
I am so thankful to be done with the last 9 months of chemotherapy! Now everyone can congratulate us and I won't have to hesitate and point out that there is still something to take care of - because WE ARE DONE!
We went in for more blood work today and to make sure that everything is ready to go for having Averi's central line taken out soon. Her ANC is up to 1140. I love that her body is recovering so nicely!
I had the nurse thoroughly examine my 'back seat dressing' and she said that it actually looked really good. I told her I wouldn't be offended if they had to redo it but she insisted that it looked fine.
After leaving the clinic, we headed over to the floor to say hello to our 'family'. Averi enjoyed seeing everybody again, but especially her boyfriend Nurse Tim.
She just lights up when she sees him. I've threatened to tell his wife about the little love affair he's having with Averi, but he insists she already knows. :)
I've been avoiding this post because I don't quite know how to word it...here goes.
I finally got 'the phone call' today. It only took them an entire week to get back with us, but at least now we have the final results and we can be done with it (in reality I'm bummed we didn't hear the preliminary results last week but I'm trying to stay positive).
The oncologist said the biopsy looked fine. I felt a wave of relief wash over me...and then he kept talking. He said the pathologist made a note that one of the cells looked a bit off. They don't know what's making it look different and they aren't at all concerned about it. As far as chemo is concerned, she doesn't need any more treatments at this time. And then Mr. No-bedside-manner topped off the conversation by reminding me that there is always a chance that the cancer will one day return.
I hung up the phone and just sat there, confused about how I should feel. If there's nothing to be concerned about then why couldn't he have just said that everything looked fine and left it at that? Why remind an already over stressed mom that her daughter's cancer could return? I know that; I watched it happen to the little boy down the hall.
I'm thrilled that we're done with chemo but my overconfidence that everything was going to be super fantastic was just smashed. I suppose it's a time for celebration but now there will always be a small part of me that will always worry (and in truth it would have been there anyways).
Regardless of the small worries, we are done with this phase of our lives and ready to move on to getting Averi's port out and returning to 'normal' life!
I'm just guessing here, but I think a few people may be a little frustrated with the lack of posting lately (I use the term 'lately' loosely here). The truth is, I tried really hard to be up to date before we left for a very well deserved month long vacation, and it just didn't happen. Once we returned, the amount of stuff to write about was overwhelming and I found myself finding things to do to occupy my time so I wouldn't be able to post. I have since repented and am ready to update you on the amazing journey Averi continues to have. :) Thanx for sticking around (and for caring enough to be mad at me)!
I know, I know...I have avoided the blog for far too long. Don't worry, I have a super awesome excuse. We took a month long family vacation, away from hospitals, central lines, vomiting, pain, and upside down lives. It was amazing!!! (and now that we're home blog posts are sure to be coming soon :) )
So, here's the deal. While we were gone the Buddy Walk was looming closer and I was too busy enjoying the lack of responsibility (as much as I can have) too spend time asking for donations. So this is my call for support:
I'm not a big fan of asking people for money but the Down Syndrome Buddy Walk is one of the few things I believe in. Donating to the Buddy Walk helps support people just like Averi and the families that love and care for them. It supports the Down Syndrome Association of Central Ohio, which funds support groups like the one that we attend every month (that group is my second family), research, information for new parents who have just learned that their lives are following a new (and amazingly wonderful) path, and much more.
In order to get our team name (Can't Keep Me DOWN) printed on the back of our shirts we have to raise at least $1,500 by August 28th. Please, if you read this blog and Averi has touched your life in any way, help us reach our goal by donating.
If just 72 people (I think I have at least that many friends) will join our team for $21, we can reach our goal and each member will also receive a Buddy Walk shirt with "Can't Keep Me DOWN" printed on the back (you're not stylish unless you have one :) ). Plus, who can say no to this face?
I am so grateful for all of you who love, support, and pray for Averi. Each of you have helped our family in more ways than you can imagine. http://www.columbusbuddywalk.org/
*Make sure your contribution goes to Team Can't Keep Me DOWN*
Now that we have been home for a little while, we are starting to get a tiny bit adventurous and actually leave the house to enter the big bad world of germs.Today we went to play putt-putt as a family, figuring it was safe to take Averi outside and strapped in a stroller.
As I stuck my head in the car to unbuckle Averi I noticed that she was once again playing with the top of her central line dressing. She loves to comfort herself by fiddling with things and more times than not she pulls down the front of her shirt and picks at her conveniently placed dressing. Lately we have been wondering what she will do once the line is removed.
So...not only had she been fiddling with her dressing while we were driving, but she had pulled it off all the way down to the site. If she pulls it off a little we can always tape it back down until her next dressing change, but once the actual site is exposed and no longer sterile you are in trouble.
So I buckled her back in, drove back home, got a dressing change kit, and drove back to meet Dan and Kaili. Now I don't know if you're aware of this but the parking lot of a putt-putt facility is not on the top ten list of sterile locations. Given that knowledge, we pulled both car seats out of the back seat, closed the doors, and turned our back seat into a 'sterile' field.
Oh, and did I mention that this was my first dressing change to ever perform by myself? I'll admit that it didn't look half bad when I was done, but I will definitely have the nurses look it over the next time we go in to the clinic. If that's not an adventure, I don't know what is!
Sometimes Averi does things out of the blue that totally surprise me. I have a typical child, so I know all kids get to a point where things just start to click for them, but as you may or may not know, anything new that Averi does takes a ton more time and effort - and seems to mean more too.
Today she was chilling on the couch with me and decided to pull up onto her knees all by herself. Once she started getting a reaction and laughing about it, it turned into a game and she repeated it enough times to get on camera.
I love her little personality. She cracks me up, even when she's working her butt off to do it. I think we may have just stopped the world's turning for a brief moment when we found a way to make PT fun. :)
Keeping Averi in the infant carrier has been very convenient. Not only does she weigh in at 19 pounds making it easy to still carry her around but I love that during the few weeks we're home between cycles I can put her carrier in the stroller and completely cover her with both visors (keeping the germs at bay).
I've always said that we would convert her to forward facing when she turned 2, but it seemed silly since she didn't even get a car for several days after her birthday. Now that she's done with chemo, there are no more excuses.
I can't believe how old she looks. Kaili loves having her sister facing the same way so they can play together and Averi loves being able to see everything. I can tell riding in the car is going to be lot more fun now.
In case you're wondering, we still haven't gotten the results from Averi's biopsy and yes, it's a 3 day weekend. After not hearing anything on Thursday I called yesterday and left a message with the nurse hoping to at least hear the preliminary results even though we couldn't get the port out. I never heard anything back. By the time Tuesday rolls around and the clinic is open again we should have the final results. Oh well.