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,