Tuesday, July 20, 2010
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
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.
Tuesday, September 15, 2009
Everywhere we go, people are always asking us how she is doing so I thought now might be a good time to update her followers. But here's the thing: I'm not sure what to say. You see, Cady IS different. She's stronger. She's been trying harder to hold her head up when she is on her belly. She's been "talking" more (still just babble, but a lot more of it with different sounds) and even laughing - a real little 2-year-old giggle, that is. Not the sound she usually makes that's her version of a laugh. Her flexibility has improved, if only slightly.
And she seems to "get it" a lot more than she used to. She seems to understand more than she had and she tries to do the things you ask of her, even if she's not successful. Two months ago if I asked her for a kiss, she'd stare at me blankly or look the other way. Today, she smiles, looks me right in the eye and either reaches for my face or tends to lean my way.
Her actions are more purposeful and directed. When I tell her to give me her hands (something she has understood and attempted to do for months now), instead of passively reaching in my direction as she used to, she actually looks at my hands and shows she is purposefully trying to follow through.
And she seems happier! She's smiling more, less crabby. She enjoys playing with her therapists and when the nurses come to see her, she smiles at them instead of looking away as if to say, "Oh no, not you again."
BUT. (And yes, there is a but.) I can't help but wonder is it the blood? Or is it just her getting stronger? She HAD been making some strides just before the infusion. She was rolling around with greater ease. She had been holding her head up more.
And the answer is.... Who knows?? My gut? My gut says I can't wait to see what the next eight weeks bring!
Here's a recent picture of Cady and her big sister (who is now a kindergartener!!):
Thursday, July 30, 2009
Warwick Beacon and Cranston Herald (the same story was in both papers):
Friday, July 24, 2009
Before I begin, I want to apologize to all of Cady's followers that this blog has not been updated in weeks. I hope you can all understand why. It seems every time there looked like there was time, something else came up - a few times it was sleep. Much needed sleep.
Before I tell you all about the re-infusion, I want to thank everyone who came to Cady's Car Show July 11. It was a great success, thanks in large part to Officers Lee Sohn and John Rocchio and the Cranston Police Department, Rhode Island Rentals, the Blue Knights, Pete Choquette of Psycho Kustoms, United Water, Scott and Jessie Strumar and Texas Roadhouse Cranston, Melissa Loiselle and Sonia Chopra and the scores of ladies who baked, Danika Morgera, Magician Steven Craig, my wonderful family and friends who are too many to name and, last but not least, DJ Tommy Tunes. I hope I didn't leave anyone out!! Our silent auction wasn't quite as successful, however, and though we did sell a few items, many did not receive even one bid. We will most likely host an online auction to sell the items or save them for future fundraisers. It's my thought we just didn't have the right crowd for an auction.
Here are a few pictures:
I also want to take a moment to thank my sister and brother-in-law, Kerri and Chris and their neighbor Cara for hosting a yard sale July 12. Chris wound up selling the neighbor's Corvette to one of the first people to pass by. The man told the neighbor he'd pay him $5,000 cash, so long as they promised to give $100 of it to Cady. It was an offer they couldn't refuse and when the man then proceeded to place another $100 in Cady's hand, just like that they had raised $200. :)
Our trip to Duke was a lot of fun. We arrived at our hotel Sunday morning a little after noon and had some lunch while Cady napped. (She did great on the planes!) Then visited a local mall where we bought Cady's birthday present: a portable DVD player! Let me just tell you, that thing sure does come in handy! We try not to let the kids watch too much TV, but for Cady, when it's one of the only things she can do that she enjoys, having that DVD player makes life much easier, especially when we are out and she's not in the comfort of our home and around the things she's used to.
Monday morning, Cady's birthday, we headed to Duke for her physical and blood work. Poor girl had to get pricked twice to fill up eight tubes of blood! One vein wasn't enough and pooped out on the LAST tube! I felt so bad for her. She did NOT like having her legs restrained.
But, the rest of the day was a breeze. We went back to the hotel so Cady could eat and nap and at about 3:30 our friends Melanie and son Dylan came to take some birthday portraits. Unfortunately, it was raining so we weren't able to get as many outdoor shots as we would have liked, but Melanie was still able to get some really nice pictures.
After our photo shoot, we headed into downtown Durham where we met with our other friends Amber and her daughters Keaton and Emery at a place called the Mellow Mushroom. They had some fantastic pizza and even as I type this, I am remembering the delicious crust. YUM! We walked around outside by a gigantic water fountain for a bit before we left and Cady liked this. She enjoyed watching the water fall over the edge.
Tuesday was the big day and we woke up nervous, anxious, ready to go... Corey was a nervous wreck because he learned about the possibility of an allergic reaction to the preservative in the blood. (I had already been made aware of this possibility - and I'm pretty sure I told him, though he doesn't recall.) Anyway, only once did this reaction, which can cause respiratory failure, cause Dr. Kurtzberg to stop the infusion, so I wasn't really concerned. Corey on the other hand wouldn't relax until all the blood was in.
We were dressed and ready to go by 9 a.m., except we didn't have to be there until 11:15. What were we to do with ourselves?? We decided to head over to the Duke Gardens and found that a wonderful relaxing way to spend our time. It was beautiful and Cady really seemed to enjoy it.
The process back at the hospital was very easy and before we knew it we were in the room waiting for Dr. Kurtzberg. We were told we'd be spending much of the day waiting, so we were prepared to do a lot of sitting around. I brought a book, C read some magazines and Cady was happy to watch Diego on the wall TV.
A little after 2, Dr. Kurtzberg was ready to do Cady's infusion. The blood was thawed and had arrived and it was only a matter of minutes before Dr. Kurtzberg was inserting the needle into Cady's right arm. She cried for a few moments, but after that was content to just watch the DVD player. As the blood went in, I could feel the Corey's tension slowly start to ease up until he finally realized the blood was in and we had achieved our objective! Cadence's miracle blood was now flowing in her veins!!
The rest of the day was spent waiting some more. After the blood went in, Cady was given an IV for two hours to help push the blood along through her system. We did meet the other families having infusion that day - one traveled all the way from Italy and the other was actually NOT a CP patient, but a victim of Shaken Baby Syndrome who now had Traumatic Brain Injury. I'll tell you more about them in a future post.
We left the hospital at about 6:30 and headed for steaks at Outback before going to the hotel for one more night. Wednesday would bring us back to Duke for a follow-up with the neurologist and to the airport for a 5:40 flight home. However, that didn't really go quite as we had hoped. It turned out that the doctor was TWO HOURS behind schedule and when at 3:20 we still had not been seen, we had to leave in order not to miss our flight home. I felt really bad about this, like I had somehow not held up to my end of the bargain. As this is a experimental procedure, Dr. Kurtzberg would like all patients to be seen by the neurologist after the infusion and again in a year. By missing this appointment, I felt like we were taking away a part of her study.
We did make it to the airport with a few minutes to spare. Much to our delight, the lines at security moved pretty quickly and we were on our way to the gate. Just as we settled into our seats, Cady threw up all over her knitted blanket. It was a good thing I had that resting on her lap! As soon as I cleaned it up, she threw up again! That was NOT fun, however the second flight home was much smoother and finally at about 9:40, we landed in WARWICK (not Providence as it is called).
We've been home for almost a week and everyday at least one person will ask if we've seen any changes yet. We know this is silly since we were told it'd be months before we saw any results, but this morning Corey happily reported to me that he told her, "Cady, say daddy," to which she replied, "Daaa..." Coincidence? Probably, as she had been getting stronger the last few weeks before we left, but it's fun to think she's already making strides.
My wrists are about to fall off, so I'm going to wrap this up for now, but you can be sure I will update as often as I can and definitely will when we have good news to report.
I want to thank you all - again - for caring so much about Cady and following her story. It means more to my family than you can possible imagine.
Hugs to you all,
Thursday, July 2, 2009
(If this is your first time visiting Cady's Cause, click here to read about why this blog was created.)
We would like to thank everyone who came to the breakfast on Sunday. We had a great turnout and everyone said they the food was excellent and they had a nice time. There were about 160 people who attended (and several more bought tickets but did not come). Combine that with the CLCF baseball players that were there and we couldn't believe Cadence actually fell asleep for the second half of the event! In all, we raised roughly $3,000 (not including the extra donations people made when purchasing their tickets). We can confidently say the breakfast was a huge success and we once again thank all who came and/or donated raffle items. Cady is very lucky to have such wonderful and generous people in her life.
Here are some pictures:
Friday, June 26, 2009
As we mentioned earlier this week, DJ Tommy Tunes has agreed to come out and play some music for us. Tom, who also does weddings, private parties, backyard functions and other special events, hosts karaoke nights at Fitzpatrick's on Park Avenue in Cranston on Wednesday and Sunday nights, Rosie's on Airport Road in Warwick (formerly Sha-na-na's) on Thursday nights and Meatball Mike's on Friday nights (also in Cranston). If you are out and about on any of these nights, please stop in and say hi. We know he'd love that!
Next up: BAKE SALE! We will be selling all kinds of baked goods including brownies and cakes, chocolate chip cookies. If you'd like to bake something and donate it to the sale, please let us know; we will gladly accept any yummy treats you think others would enjoy.
We will be giving away some great raffle prizes including a grand prize of a NINTENDO WII!!! We are very excited about this fantastic giveaway and can't wait to see who the lucky winner might be. We'll also have lots of other cool stuff including restaurant gift certificates, liquor and gift baskets, certificates for free lobsters and a $50 gas card, just to name a few.
And don't forget about Silent Auction. Bidding will begin right at 10 and will end at 3 p.m. We're still compiling the list and descriptions of items, but once we do, they will be listed here.
That's all we've got for now, but keep checking back for more news and info.
With Peace and Love,