As Always...Two Steps Forward, One Step Back

I fear that the last time I posted with overconfidence on the subject of Ruby getting off of her feeding pump. Everything had been going along fine until we hit 8 oz boluses. We had been increasing the amount by 1 oz per bolus every week and she had NO difficulties. Then we hit 8 and she started projectile vomiting. After a few more attempts it was clear that it was not going to happen so we backed down to 7 oz. But ever since we tried 8 and she vomited, she has been grunting and straining to push the food back out of her stomach and into the syringe which have turned feedings into a complete struggle. So now we are back down to 4 oz boluses...where we started. And she still has some trouble allowing those feeds to go in smoothly :(

All of this has got me down. Really down. I was so happy about her reaching the 8 oz goal. It meant no more feeding pump...EVER. But that is not the case. And worse it seems like we might have ruined the whole bolus feeding experience for good. I'm afraid this has worsened her oral aversion as well. She seems to think it a negative thing when her tummy starts feeling full, which was the exact opposite intention of switching to boluses. She has not been eating much at all these last few weeks. It's been a big deal if we can even get her to taste again. Sadness all around.

I'm really really hoping these changes won't stick and that she'll get back on track with her feedings and with eating soon. It's so hard to see her falter and not know what to do to help her. I'm tired of it. Tired of every meal being a battle. Every feeding a nightmare. I know I should be grateful for the progress she has made and rejoice in things like her being off of the pump during the day, but right now I'm just bummed. It never seems to get any easier even when it does. She is dealing with food so much better than she was this time last year and yet the distance between how she interacts with food versus most other children still feels so very far.

Anyways, I don't have too much time to edit this or finish off in a nice way...just wanted to explain what's been going on lately. Let's hope for better days soon.

Sassy Toddler Syndrome

Last week was rough. Ruby became a toddler last Wednesday...seriously it happened that quickly. Because of her chromosome deletion I'm always on the lookout for behavioral disorders. And as much as I HATE to put her in that box and slap a label on the outside, it's so hard not to. I was so stressed those first couple days. And when stressed I become vulnerable. Susceptible to ideas like, "draw a hard line with your child," "set strict boundaries," "be rigid with discipline." But I know that I am not that mom. That's just not who I am. I am not a screamer. I am not strict. I am quiet...most of the time. And I am flexible. That is how I am going to parent my child.

Ruby is not quite 1 1/2 years old. She is in an odd stage of life. She understands desire, want, and pleasure, but has an extremely limited concept of self-control or patience. She can't even communicate her frustrations and I know she feels limited by her inability to walk and move the way her peers do. All of these things lead to minor behavioral problems. I see very clearly now that they are NOT abnormal behavioral problems. Ruby is simply a toddler.

I know that Dan and I were both demanding children. Actually Dan is still demanding :P We are very emotional, we are very contrary, we are VERY stubborn about certain things and as toddlers I can only imagine how these traits exhibited themselves. Undoubtedly Ruby is like us. She is very determined and insistent, and while these characteristics helped her to survive her first few months in this world they can make for a combative toddler. Thank goodness she is also incredibly affectionate, bright, compassionate, and adorable. :)

I feel renewed and freed by this realization that she is simply growing up. And I know I can handle it, because my mom could handle me, and Dan's mom could handle him--although I have no idea how! But here's how I plan to "handle" Ruby: I will love her. I will acknowledge all of her accomplishments and all of her good behavior. I will not sweat the small stuff or turn our house into a war zone where it's parent vs. child. I will keep things upbeat and positive and transition quickly out of discipline with distraction. And I will have fun with her! Because after all this is a very little person we are talking about. What good does it do to scream at or punish someone who can not understand what is going on. The only thing she will learn from that is to mimic aggressive and negative behavior and that is not who I want my child to be. I think that some people are too quick to use the word spoiled when a kid is merely being a kid. A child is not spoiled because they whine or throw a tantrum or two. They are a CHILD! That doesn't mean I will reward bad behavior or allow Ruby to hit or have everything she wants just because she wants it. It means that I will discipline her the way a 1 1/2 year old should be disciplined--with a whole lot of forgiveness and understanding for what she is going through as a developing human being.

Happy Holidays!

Hope everyone had fun during the Holidays, I know our family did! One Ruby plus one Ronan equals a whole lot of happiness for everyone. Both Christmas and New Year's Eve were relatively relaxing holidays for us and that was just fine by me!

"Uh, Ruby? You know there are presents under the tree, right?"

Ruby has been doing great. She hasn't had a cold for a week or so and that's been a big relief. Boy did we need a break form runny noses, coughs, and keeping ourselves in quarantine. It's been nice to be out and about like we usually are. We've made it to Discovery World and the Domes recently which were fun as always. Casey and Ronan joined us at the Domes, and both kiddies adored it. I really hope our babies have as much fun growing up together as we did. Every day was an adventure. :)

Some of the family at Christmas. I love these people :)

In other news I'm pretty sure Dan has gotten me addicted to coffee. I've always liked coffee but since we started trying to have kids I cut the habit so since then I haven't had much caffeine. But now that he's working from home there is always coffee being made and I inevitably drink some. And now I am dead to the world until I have at least two cups...bummer. I know this is not a Ruby update but I really miss being able to just wake up and go! Husbands...

Need I add a caption to this?

But speaking of a Ruby update: GI-wise she has been...well, she's like a different child! 75% of her feeds are done as bolus feeds during the day, with the other 25% still on the pump at night. This is AMAZING! It means that she does not have to be attatched to that thing during the day, a true joy now that she is so mobile and close to walking. It's also is a sign that her reflux is under control. Last year Ruby was on the pump for 20 hours a day, being fed into her intestine, and her stomach was still vented 24/7 into a sputum trap. What a lovely name, right? So much fun to explain that one to strangers. "What's that? Oh, that's her sputum trap. Those are just her stomach juices sloshing around in there...just ignore it." Sure... Anyways, now she is fed into her tummy, and is being fed in a far more "normal" fashion. I can honestly say I never thought she would get to this point, at least not by this age. I am so happy for her, and I believe she will be off of the pump entirely in a few weeks! Yay, Ruby!!

Passed out after Christmas fun

Other than that life's been good...normal good. Sometimes happy, sometimes sad. I'm looking forward to a good year with my baby. Hopefully it will be surgery free and we won't have any major hospitalizations. So wish us luck!

Happy New Year! And YES, she made it to midnight!