Maddy's Memories

Today I had the rare opportunity to spend some "alone time" while she and I drove home from church. She started telling me about 1st grade and how her teacher, Ms. Pruitt, had a football bean bag chair in her room. She said that it was special for kids that were feeling sad. Whenever Claira was in the hospital, she would sit there alot, usually with her 2 best friends and they would read a book together. Then she went on to talk about several other memories she had. I can't recall what those memories were because my mind was set on the visual of a broken-hearted little girl being comforted by her friends and teacher. Tom and I were affected deeply by Claira's experiences, but let us not forget how greatly our other children struggled as well.
Our whole family continues to heal ... including Claira!

A Celebration for an "Extra-Ordinary" Girl

Let's just say ... we know how to party! With a little help from Mimi and Aunt Piki and my good friend Dawn, Claira's party was beautiful. Our friends Barry and Tracy Reynolds went out of their way to make our friends and family feel welcome. Claira's sisters and cousins were thrilled with the pony rides. Maybe it was a little over the top for a 1st birthday party ... but Claira's 1st year was a little over the top as well! She's growing and happy. She's become "Her Royal Roundness" to all of us.
Many families have suffered far greater hardships (and continue to do so). We remain grateful for her health and the wonderful medical care, support and prayers she received. Many of you know that I'm studying to be a registered nurse ... with hopes that I can give back to other families in the future.

Happy Birthday Claira!

1 year old today! It's truly an amazing milestone ... we've all felt such a mix of emotions today. She's a different baby, a different person. It's hard not to reflect on where we were and what we were doing a year ago.
Last night we all discussed how Tom, T.J. and Kaylee took me to the hospital at midnight to prepare for a possible induction the next morning. The doctor broke my water at 7:30 am and Claira came at 8:30 am. One hour ... she knows how to make an entrance! There was considerable meconium in the womb so she was watched closely for 24 hours due to concerns with her lungs, but other than that she was a healthy 9 lb baby! I remember recognizing her the moment I saw her, she looked like her big sister Kaylee. (Of course, now she mostly resembles her brother T.J.)
I remember the two months before her diagnosis feeling so completely overwhelmed with 6 children and a little depressed (okay ... alot depressed). Now I am overwhelmed with the feelings of gratitude that she's shown me and a deeper appreciation of life.

Claira's place in our hearts wasn't planned but she was definetly part of a greater plan.

We will be celebrating Claira's milestone with our extended family and friends later this month. (Pictures coming soon!)

Humble Reminder

This evening our family went to a pool party for T.J.'s jazz band. A good friend of mine, Robin Chase, lived up a few houses from the party and so I walked over to say hello as I hadn't seen her for a few months ... especially since Claira's surgery. She introduced Claira and me to her husband and family. As she introduced Claira she pointed out that she was the baby who been in the hospital several times. I gave an update and a brief description of how she's progressed (I always welcome a chance to brag about her).
Her mother-in-law approached me and, in passing, mentioned "when we were praying for Claira". I had chills. I have never met these people and yet they knew us. They knew Claira ... and prayed for her. I was reminded of how the heavens were opened in behalf of our family by more people than I think we'll ever know.
Thank you ... again ... to all who prayed for our little Claira. Those prayers were answered.

Movin' right along

We recently purchased a rubbery-top sippy cup for Claira. I cut part of the spout out so that she wouldn't have to suck to drink. Amazingly ... she's drinking water! That's all she'll drink (for some reason she doesn't take anything else from a cup) but who cares?!? She's drinking! Combine that with the fact that she's eating everything a healthy 10 month old should be eating ... we're almost there ... free of the tube feedings that is!
At her last cardiology appointment she got a huge welcome as everyone was thrilled to see how much weight she'd gained. Dr. Kimberling wants to do another echo in 6 months. If the scar tissue on her aorta is still the same we'll go to yearly visits. When she turns five they'll do another cathyter procedure to open the aorta more. If that doesn't work she will have to go through another surgery. But ... that's a long way away and who knows what could happen in 4 years! She's already an ongoing miracle.

Look at those CHEEKS!!

Isn't she beautiful? At her 9-month check up she weighed in at a record 17 + pounds! Sorry the update took so long ... we're having a funeral for our computer.
She loves food. Can I say that again? She loves food! She eats just about everything that a baby her age should eat.
She still depends on her tube feedings to maintain her weight (but who cares ... she's cute!). She likes drinking water, a little. She prefers playing in it after the first swallow. That first swallow in itself was a miracle. Her speech therapist thinks she may have a slight aversion to smells so we're to take film canisters and put holes in the top. Inside we'll put all kinds of smells ... coffee, cinnamon, scented lotion, vanilla, etc. That should help her adjust to more kinds of smells and then hopefully tastes ... such as juices, etc.
The important thing is we're getting there!

Could I ask for more?

Claira is doing beautifully! She's gaining weight ... quite a bit I might add. Her thighs are so chunky! I laugh when people comment on how little she is ... I have to think to myself "If only you saw her before." We've moved on to table foods. She truly doesn't like the consistency of baby foods. She loves the Gerber "Cheetos". They melt in her mouth and she begs for more! Her speech therapist comforted me today by telling me that I have to remove all normal thinking for now and remember that we're focusing on getting her to eat. The good nutrition habits will have to come later.
She drank from a cup for the first time today ... granted it was white grape juice with quite a bit of cereal added ... but nonetheless it was a cup. And she loved it! She looks great and acts like she feels great. We've had more problems with granulation tissue around her button and the surgeon recently said that some kids just are prone to it. She's had her third dose of silver nitrate. Hopefully this will get rid of it. If this doesn't work, they may have to remove the button and put the gastric tube back in for a time so that it can get more air. That is soooo not fun ... but who are we to complain at this point?!?