Thursday, April 21, 2011

She tried.....

So in my last post, I alluded to the fact that things hadn't been great for Brigitte for a while. Sadly, they haven't gotten any better.

I went to Florida with Brenna for her National Cheerleading Competition back in March. We had a wonderful time together and I was finally starting to feel a little normalcy. It was wonderful to be away and I couldn't help but think about how great the summer was going to be. We arrived back home from Orlando on a Monday night at 10:45.....Brigitte hadn't been doing all that well on Monday, and she was admitted to Children's on Tuesday morning at 9:00 am. I didn't even get 12 hours at home.

We spent the next 10 days inpatient, where she underwent 3 different surgeries. During one of them, her blood pressure dipped dangerously low and she needed a very strong medication to avoid a code. The last was to remove the port she had in place because it was infected. She has been without central access since then....and it has been a downhill slide since then.

We knew that this was a big concern and I have to be honest and tell you that nobody on her team was comfortable with the decision that Bryan and I made to take her home without a line. But, we needed to put all of the "can she do it" wondering to rest and give her the opportunity. So for the last month, we have struggled and struggled with trying to feed her and keep her hydrated. From a health standpoint, we have also battled a pneumonia as well which hasn't helped things. From a nutrition standpoint, it is hard to ever recover from illness when you are are not optimizing nutrition and hydration. Brigitte is now below the 30lb mark....she will be 5 in August. Her size 2T pants are falling off of her. I feel like I am going to crush every little bone in her body when I hug her. It is so sad.

Thankfully, she has had a good week at school. It is the only place she is happy. It is the only place where everyone just leaves her alone and lets her be a little girl.

Her behavior has been absolutely horrendous. She is hitting herself, throwing temper tantrums, and slamming her head against the floor. We are attributing this to the fact that dehydration makes you feel just plain crummy and she can't express herself and this is how she reacts. It is awful to watch. My heart truly, truly aches to watch her like this. Add to this that food in her belly really just makes her sick, she is gagging and retching with quite a few of her daytime boluses and we spend every morning holding her hair back with a towel in front of her face waiting for her to say "I all done" while she vomits from the intolerance to the overnight feeds.

This is no way for a little girl who is typically so happy to live. None. Its not fair.

So, next Thursday her surgeon will again use up another precious access spot (you only have so many in your body) and place a central line. She will resume TPN and hydration immediately following the surgery. I honestly don't know where we go from here. I don't know what her future holds.....so please, don't ask me. I just wanted to keep you all up to date and again ask for prayers for Brigitte. Thank you so much for always thinking of us. It means so much to us. It really does.

Thursday, April 14, 2011

It's been a long time......

I wish I could say that things have been so gloriously good and that is why I haven't written...but that would be a lie! But that isn't what today's post is about. I will save you all the gory details of the drama of the last few months for another post on another day. Today instead, is about my oldest daughter, Brenna.

Brenna will be 10 on Saturday. I simply cannot believe it.

Was she not the most beautiful baby?!?!? I know I am biased, but I don't think there is a single one of you that can look at that picture and not say she was a gorgeous child. Not only is she beautiful to look at, but she has become a beautiful person with more determination and compassion than I could have ever instilled in her.

Brenna had her banquet with East Celebrity Elite last night. I walked in there thinking how amazingly proud I was of Brenna this year. Although it was not her first year as a cheerleader, it was her first year at a gym of this caliber. She walked through the doors of ECE last May not knowing a soul and only having a tumbling skill of a cartwheel and a roundoff. She competed nationally and her team placed 3rd in the Nation at the UCA Nationals in Orlando this past March. She learned what hard work really was and also that if you put your mind to something, anything you want can happen.

The last few years have been anything but easy for Brenna. Growing up the oldest child of a large family is a job in and of itself. Being the oldest girl in a family with a child with severe medical issues is another story. Brenna has learned to rise to the occasion. She is wonderful with Brigitte. Her patience is that of a saint (she does not get this from me!!!) and her grace is something we should all strive to acheive. She has always been a good girl and my dad is right when he says that she is always happy. She truly is. She has become quite the little comedian and I am finding that she is developing a bit of my, ummmmm, sarcasm! It has been nothing but sheer joy to watch her grow over the last few years.

Last night, though, I saw her change in front of me instantly. The banquet consisted of the owners of the gym, coaches from various teams, parents and of course all the girls on the mini and junior level teams. Each set of coaches from each team got up and said something about each girl on the team and then had a few "specialty" awards to give out. One of them was the unsung hero award. As they were describing this cheerleader, they said "she is a girl who always did what we asked of her," "she is a girl who never complained if she were in the back row," "she volunteered to fill a void whenever we needed her to," "quietly one day this girl said "I can do my double backhandspring, want to see it?"....and then landed it perfectly. The Unsung Hero for Junior 3 is........Brenna Kaiser.

I was in a room full of people and just wanted to cry. I have never been so proud, with the exception of the day I gave birth to her.

The definition of an Unsung Hero is: a person who makes a substantive yet unrecognized contribution; a person whose bravery is unknown or unacknowledged

Reading this definition this morning, I realized that this award couldn't have been more fitting. Brenna certainly did her share and earned that award all on her own. But she is the unsung hero of our household as well. She has taken a backseat over the last four and a half years. She has sacrificed and been brave far beyond any 10 year old I have ever met. She never asks for anything, never complains and yet, just when I think I am going to lose it on Brigitte some days, Brenna walks around the corner and takes her by the hand to the other room and plays with her. She does all of this and yet NEVER, EVER asks for any recognition. None.

She is amazing. She is beautiful. She is smart. She has worked to land backhandsprings and tucks. She has a wonderful imagination. She is determined. She is compassionate. She is my daughter. And I am the luckiest mom in the world to have her.

Happy 10th Birthday Brenna!! I love you with all of my heart. You make me so proud every, single day.