Monday, August 2, 2010

Wipeout

We watch Wipeout with the kids sometimes, and now Damon has tried his hand at building his own obstacle course.


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Friday, July 30, 2010

Girl Time

Just having some fun with my girlie girls.

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Wednesday, June 23, 2010

What a difference a year makes

One year ago today, my life was shattered into a million pieces. I felt like nothing would ever be the same again, and I had no idea what the future held for me. I thought that every dream I had for my life and my family and my children had changed. I couldn't eat, I couldn't sleep, and I shook. My hands would not stop shaking, and I could not stop crying. The way I felt about this little baby girl inside of me had changed so quickly and so immediately. I wasn't sure what her quality of life would be, and I didn't know how our lives were going to change once she got here. I wanted to hope for the best, but there were so many unanswered questions, and terrifying statistics. All of the sudden google was the scariest place in the world, and the words spina bifida were completely and totally depressing.

As the week went on, we found hope. Through prayer I realized that I needed to change the way I was thinking about this child. She was going to come to me exactly how my Heavenly Father wanted her to come to me. He had a plan for our family. And this was not the big "trial" that I always worried about because my life was far to easy. This was my daughter who I will love and adore, and she will add so much to my life. This baby is not my burden, she is a blessing. It sounds so simple, but at the time it was extremely profound. I also found other mothers online who knew what was to come with the spina bifida. We found a message board that we were able to ask them questions, and we looked at their children on blogs. These were happy, adorable, wonderful kids and we felt so much better seeing their stories. We also learned about the MOMS study, and that gave us purpose. It was less than 4 weeks after the diagnosis that I had prenatal surgery for Kaitlyn. It went by VERY fast, and we were able to focus all of our energy and attention on getting admitted and qualifying for that clinical trial. And it was very hard, and miserable, and difficult, but we made it through, and I'm so glad we did.

Before we knew it, our daughter was born. She was so tiny and adorable. She looked just like Damon and had the same chubby cheeks and Audrey. She was perfect, and I loved her so much. I am so grateful that we had this last year to grow as a family. That we were able to add this wonderful little girl into our lives. She does so many things we never thought she would do. She moves her legs and feet and toes, she rolls around, and she is very social and sweet.

Sometimes I get caught up on the little things, like she can't stand up and bear weight in her legs yet. And she isn't sitting up for long without tumbling over. I go to church and see the younger babies doing some of it, and I forget that she has to overcome so much more than they do. I am so proud of her, and I know she belongs in this family. Kaitlyn is our miracle.






Thursday, May 27, 2010

Kaitlyn in a good mood



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Wednesday, May 26, 2010

Swimming

Fun in the backyard

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Tuesday, May 25, 2010

Audrey enjoying the library books



I love finding this in the family room. Imagine when she can actually read.


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Thursday, May 20, 2010

Blogging from my iPhone

Hey guys, guess who is going to blog more now that I found a blog app for my iPhone? Awesome!

So, here is a picture of the kids visiting Kendall at work. I'm sure all the attorneys at his firm loved the ruckus that we brought to the floor. :)


And, for those of you not on facebook, here is Kaitlyns new trick. I had to rescue her from underneath the coffee table earlier this evening. Go cute roli-poli!

YouTube Video

Here is another video of us jamming out to "The Princess and the Frog," while we were on vacation.

YouTube Video

Here's Audrey swimming with her daddy.



Ok, so now that I can post a quick video from my phone I have no excuses for not updating the blog. Count on me posting more than 3 times a year. Life is good here in hot Houston, we are just waiting for the pool to open and we'll make sure we take videos and pictures of all the swimming we are doing.

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Tuesday, February 2, 2010

The goings on at the Burr House

I was just reading our other website from before our lives took a dramatic turn in a new direction, and realized we haven't been updating on all the fun new things that are happening at the Burr home. Our kids are still hilarious, and I thought I'd try to give a glimpse into some of the silly things coming out of their mouths.

We've had to be very careful during our scripture reading, because Damon has become so afraid of, "the earth being on fire". He will wake up in the morning and ask, "When is the earth going to be on fire?," or sometimes, "When will the earth be fired?" (And of course, "earth" is pronounced "euwf.") We reassure him that it won't be happening for a long, loooong time. The other night we were talking to him about what he was most excited to do when he grows up, and he said he can't wait to be able to cook dinner and go to work and drive cars and read. I can't imagine living in our world and not being able to read. It must be tough for our little guy, who understands so much but is so limited. He also wants to be a paper boy and a builder. And he kept talking about being married; was really funny to hear a four-year-old talking about "my wife." He has been attending preschool 2 times a week, which he loves. I teach one week and get 5 off. It's been going well. We learned about numbers and made cheerio abacus's (?) yesterday.

Audrey is a very fun little girl. She is quite the bruiser, and will run/jump/walk all over you if you let her. Actually, the other night she woke up a couple times in the middle of the night needing comforting. The next morning, she had a HUGE bruise on her forehead; we figured she fell off the bed and hit her head on her little rocking chair. I remember as a girl, I couldn't understand how anyone had knees that weren't scraped and bruised. I think that will be Audrey. Her hair is getting so long and still is very curly with lots of ringlets. She always has to pull out the bows I try to place in her hair, and as a result she has hair sticking in all directions. She has an enormous vocabulary and loves to sing all the themes from her favorite cartoons. At night she prays for, "mommy, daddy, da-nun, Kay-wah, Chocolate (her cousin Charlotte), Pablo, Uniqua, Tasha, Austin, Tyrone (The Backyardigans), Dora, Boots the monkey, Tico, Benny," you get the idea. She has also started to show many signs of being ready to potty train. I am in denial, and would prefer to put this off. Right now I would rather change diapers than take my 2 year old to the potty every 15 minutes and clean up accidents. Damon was VERY difficult to potty train, and I tried about 15 methods, and threw away about 20 pairs of underwear, before stripping him naked and trapping him in the kitchen with his little potty. That did the trick for him. We tried this with Audrey last Saturday, and after 8 accidents on the floor, we decided to postpone the potty training. I was disappointed but a little relieved.

Kaitlyn is doing well. She cries more than my first two, and I am constantly wondering why that is; hopefully it's all just normal baby stuff, but we'll always worry with her. At this point I think she has some acid reflux (we are treating it with zantac), and some colic. She also is not able to calm herself well. We're working on it, and today I decided to try the old standby: stick her in the laundry room in her bouncy chair while the washer and dryer are going. Success! I was able to have my hands free for 2 seperate naps. She is snoozing right now actually. I have a feeling laundry will be done in a much timelier manner from now on. We now have a physical therapist: Miss Jackie, who will be coming for 30 minutes once a week. Some of the things we are working on are: rotating her joints, trying to keep her upright while sitting up, holding her head up, tummy time holding her head up, pushing onto her knees during tummy time. Fun stuff. I'm doing my best to incorporate these things throughout the day while holding her. She has her first spina bifida clinic next Tuesday. We will meet with the neurologist, orthapedics, urology, and pediatrician. Should be very informative, and they can give us a good sense of how she is doing. She'll also have another urodynamics test to see how her bladder is doing, and if we are cathing enough. As far as the CT she had earlier, we got a printout of the results, and it looks like her ventricles and hydrocephalus has increased, "slightly," since the MRI she had as a newborn. They didn't tell us what the measurements were exactly. No one seems the least bit alarmed, and the head ultrasound we had a while back showed that they were up slightly from birth as well. The increase was actually so small it could be due to measuring differences. Her vents are most likely holding steady from the head ultrasound. We'll see what the neurologist says on Tuesday. All in all, I'd say she's a little champ. She's 14 pounds, and sleeps through the night.

Kendall is enjoying his new job, and really likes everyone he works with. He is a tremendous help every night when he gets home. I'm sure I look like a crazy lady half the time trying to take care of all 3 kids. I think I am finally finding some balance in my life, running around preparing meals, changing diapers, cathing, clothing, cleaning and loving my little munchkins. All of you parents of 3+ kids, why didn't you warn us? Actually, I hear all about how hard going from 2 to 3 is now that I have 3! I'm sure things will ease up a little once Damon starts school in the fall. I am really a very lucky mommy. I have three beautiful, perfect kids that still let me hug/kiss/hold them (most of the time), and a wonderful hard-working husband who loves us and helps me with all of the typical "wife" jobs. In the past, I warned Kendall that at some point in our lives, my job at home would become more demanding and difficult than his at work, and at that point I would certainly be needing/asking/requiring him to come home and help. He was a huge helper even when I had 2 easy kids at home, but he has really stepped it up now that I am run ragged every day.

And now, finally, here are lots of pictures of the kids. I have been absolutely atrocious at taking pictures and videos lately, as well as uploading these pictures to our blog, so these are not as recent as I would like, but to make up for that, I am posting quite a few. Enjoy.

Audrey's lovely new bruise.

How Kaitlyn's back has healed.
Tummy Time!
Kaitlyn getting her first CT scan.

Damon and Audrey doing some coloring.
Homemade Play-Dough Family Night.
Aww, look at that smile.




Saturday, January 23, 2010

Some Thoughts

I've been thinking a lot recently about some of the challenges and joys of raising a child who has special needs. In so many ways, it is just like raising my other children. I love each one of my beautiful babies, and they all are so unique and adorable. One of the things I have noticed about raising Kaitlyn though, is that the valleys are lower and the peaks are higher. Like when we found out at her ultrasound that she had spina bifida, and the whole rest of the pregnancy, the surgery, living in SF, missing Damon and Audrey, obviously that was the lowest valley. Then seeing your beautiful child succeed, and overcoming the obstacles that she has like learning to eat, and breathe, seeing her legs kick and move for the first time. Those are the highest highs. Things I took for granted with my first two. I'm sure that these peaks and valleys will only grow larger with time. Even now, as I go to church and see all the babies Kaitlyn's age or a little younger doing things Kaitlyn hasn't yet, I start to worry. The worrying never goes away. I always wonder about each little delay, and how the disparity between her and those her age will grow with time. But then I see my beautiful little girl smile at me, and I know it took her longer, and she had to work harder for those smiles, and I know that I am more proud of that smile than I was of any of the others. I can't imagine the peak we will have when she takes her first step, when she says her first word. It really emphasizes for me the principle that you have to know the bad to appreciate the good.

In church last Sunday part of a lesson that was given was about all the qualities and gifts we are given from our Heavenly Father. The teacher went on to list about 15 of these, and I realized that none of these had anything to do with being intellectually gifted. I have no idea what is in store for Kaitlyn. I do know that she has mild hydrocephalus, and that her brain has a few abnormalities from the chiari that she had in utero. How those will manifest later as far as learning disabilities, we don't know. I always seemed to equate my self-worth and the essence of who I am with the way I think and my intelligence. Then, when we found out about Kaitlyn, my views have slowly changed. Some of the gifts that were mentioned were, the ability to love, the gift of faith, the gift of charity, etc. I feel like so many who are limited in intellect have these gifts in abundance. I look at Damon and Audrey, and the essence of who they are is not identifying letters and numbers and long in depth conversations about our world. It is their innocence. The fact that they don't judge others, that they love unconditionally. That they forgive easily, that they give hugs and kisses away constantly. I love them more than I can express, and it is not because I think they have so much ahead of them, it is for who they are right now. I love Kaitlyn so much for who she is right now, and no matter what happens in the future, I am going to be so proud of her for everything she is able to accomplish. I am so grateful that I get to learn these lessons, and that I get to have these high peaks. Kaitlyn is an incredible blessing to our family, and I am so lucky to be her mommy.