Tuesday, July 20, 2010

Happy 3rd birthday, Cady! What a year!

It should come as no surprise to any of Cady's followers for me to admit I am a TERRIBLE blogger. I know many of you have been wondering about Cady and how she has done over the last year.

One year ago today, Cady's second birthday, we were at a Duke clinic having some pre-testing done. The nurses checked Cady's vitals, drew a TON of blood (the poor thing got poked so many times) and told us all about what to expect the next day. We were excited, nervous, anxious and stressed out! What a day!

I can't believe it's already been a year since this all started! The 8 weeks leading up to our trip to Duke was, without a doubt, the most amazing, memorable and humbling experience I have ever had the pleasure to live through. The love and support people from all over the COUNTRY showed MY daughter was incredible. People always talk about all the bad out there in the world, but thanks to many of you, I know firsthand that there is more good than bad. Exponentially more. I know I've said this before, but I'll say it again. Thank you ALL from the bottom of my heart and also from my family. We would never have been able to make that trip without all of you!

So, just how is Cady doing? That's the million dollar question, right?

In January, I posted about how it had been six months and we had seen no significant progress. In fact, her progress was so unremarkable, her neurologist felt it was typical of a child her age with her disability and limitations. I took this as good news as we were told six months to a year before we'd see any results.

Well, are you ready for this?

A week later, JUST as we hit the six month anniversary of her infusion, Cady's gross motor skills EXPLODED. Suddenly she was sitting up and each time she tried, it was for just a few seconds more. She was taking steps in the walker, she was getting onto her hands and knees and attempting to bunny hop. She was rolling around with ease and she was holding her head up better than she had.

By April, she had us all hopeful and excited for her. In just three months time, this kid was sitting in 4 different positions (do you know there are so many different ways to sit?) and could even move herself from one to another without falling over; sitting for up to 25 minutes at a time without falling, bunny hopping around the room (though still with difficulty); making her way to the couch, pushing herself against it and lunging upward until she was able to get her hands on the couch and kneel there (kind of like a toddler cruising on the furniture except she would be on her knees); and one time at rehab she was practically running on the treadmill (they strap her in and she hangs over it with her feet just touching it). She also seemed to "get it" more. When she would look at you as you spoke to her, it was like she knew what you were saying. In fact, it used to be she would smile if you sang the song to her favorite TV show, but one day I narrated back to her an episode that really had her laughing (something else she does more and more) and she cracked up laughing! She KNEW I was telling her all about the Mama and baby Bugga Buggas on Dora and how in the end, all 10 babies shared a cookie and the little one burped! She GOT it!

In April, Cady returned to the neurologist, Dr. Kermin. After I told her all the things Cady was doing from January to April, she said, with a smile on her face, "Well, I can't say if her progress is from the cells or not, but I will tell you I am impressed."

That was enough for me. In January, she said it was not the cells. In April she couldn't say either way, which told me her progress wasn't typical.

Since April, Cady has continued to improve. While her speech hasn't gone far (though at times I feel like she is trying) and her fine motor skills are still awful, the fact that she has made so much progress with her gross motor skills is quite encouraging. In fact, her latest thing is when we are sitting on the floor with her she will crawl (with much effort and determination) across the room to you, pick herself up on to her knees and thrust herself either into your lap or around your neck for a hug. And the smile! She's so proud of herself when she does this.

Life with Cady is NOT easy, but when she accomplishes this task, the light in her eyes is truly inspiring.

Here's to another year of hope and accomplishments. Happy birthday, CadyBug! We love you SOOOO much!!

Here are a few pictures from Cady's 3 year portrait session this morning. Used to be so tough to have her pictures taken, trying to get her in a decent position. This morning we just put her on the floor and waited for the perfect shots:

Thursday, January 21, 2010

It's been six months already?

Today marks SIX months since Cady's infusion. I know many of you have waited VERY patiently for me to update her blog and I sincerely apologize to each of you. On more than one occasion I promised an update and never delivered. I feel awful about this because SO many of you have opened your hearts to Cadence and all you wanted was to know how she was doing and for one reason or another I just never got it done. That is why I begin this much-needed updated with a request for forgiveness and a heartfelt, "I'm sorry." So what do you say (insert puppy dog eyes here)?

As I continue, I am unsure how to proceed. In October, Cady shocked us all when she suddenly pulled herself up onto all fours and began rocking as if she was going to crawl. We were STUNNED! I was in tears! Could the stem cells be working? Praise Jesus! Now, Cady is up on all fours every day, rocking, rocking, rocking, even moving an arm forward in an effort to crawl, but she still does not have the upper body strength, nor the balance, needed to pull it off.

And so, we waited. For anything. More signs of improved strength, language that is coherent, a firm knowledge that she truly does understand us when we speak, but thus far, not a whole lot. I mean, yeah, she is stronger. She loves to stand with your support for balance, she enjoys bouncing on her knees (again, with support), she reaches out for toys and other objects more than she had and she laughs just a little bit harder than she used to, but it wasn't enough. Without upper body strength, she could never walk on her own. Without balance she could never crawl. She made zero progress with her eating and though she was rumored to have said Dada a few times (Corey swears she did), it wasn't enough for us to truly feel like she was communicating with us. I started to think the blood had done all it was going to do and we began to wonder if we should accept this as her fate and embrace it as her future,
our future.

The daily routine of caring for Cady has been tough lately. She's 2 and a half, so voice or no voice, she has opinions and she makes them known. Not only does she love to watch TV (something we are working hard to ween her off of), but she knows which shows she likes and will whine and cry until she gets them. Some might say we created that monster (because we did), but it was so easy to give in when nothing else would make her happy. But, we are trying and she also loves music and enjoys when we hold her as we dance around the room with Kiefer and Callia. Her face lights up when she hears a favorite song (she digs Miley Cyrus, Taylor Swift and Pink, to name a few) and she stares me down until I pick her up and dance her around the room.

Though it can be tough and over the last month it seemed the bad days outnumbered the good, we could not give up hope, not yet. We continued to support and encourage her at every turn as we worked on coming to terms with her disabilities on our own terms and conditions. So, when Cady visited her neurologist last week, I was a little unsure of how to take her feelings about Cady. You see, when I first learned about this procedure, I heard from a few different sources some of the other parents are seeing changes in their children within the first three to six months. So naturally when in October, three months after the infusion, Cady could miraculously get up on all fours, we assumed it had to be the cells. It seemed only logical, right?

But as the six month mark came closer and Cady wasn't improving enough to give us real hope, I remembered Dr. Kurtzberg at Duke told she doesn't expect we will see anything for at least six months to a year and that in some cases they believe the cells will lie dormant in the bone marrow for several months (I forget exactly how many she said) before re-entering the blood stream and doing their thing. I wondered why parents had seen changes much quicker and I started to become stressed out about the whole thing. Had Cady made the only progress she was going to make? Or maybe it was possible the cells hadn't even started their journey to her brain yet.

I kept my hope alive, though it was just a faint glimmer in my heart, sheltered by the protective cocoon that is a mother's love, not wanting to set her up for failure. I wanted to instead find a way to accept her for who she is now and not always look to her for some change. But the hope won't fade and in fact, after last week, it got stronger.

As I said already, Cady saw her neurologist last week. Dr. Kerman is an incredible doctor with whom I put a lot of stock into. She told me point blank that she did NOT think Cady's progress over the last six months was the cells. She said she has seen enough children with her injury, who present the same way she does, at her age make the progress she has.

Wait. It's NOT the cells? *Deep breath* I started talking to myself in my head.
Was the trip a waste OR, maybe, just maybe, Dr. Kurtzberg knew what she was talking about and those little suckers were still sleeping in the little Bug's bones!

Dr. Kerman went on to tell me that UNLESS the cells do the work, she does not think Cady will ever walk or talk on her own. She wants Cady to prove her wrong, but in her professional opinion, Cady's only hope for a significant change in lifestyle lies in those cells.

So, it is with that I ask for each of you to please continue to pray for Cady. Keep her in your thoughts and send out all the healing prayer and energy you can. We love you all for your support and as I have said so many times before, thank you from the bottom of my heart for caring about our baby.

I have some videos to share and I PROMISE they will come SOON! I really wanted to post this today on the six month anniversary of her re-infusion, but now I need to step away from the computer. You all have my word I will post some pics and videos in the next day or two, so check back. In the meantime, here is a recent picture of Cady and her Uncle Chris during last month's snowstorm.