My Little Corn Cake

Norah successfully received a batch of her stem cells today! The idea of having stem cells infused seems so big and grand. So for the infusion to take about 10 minutes, it just doesn't seem right. Yet for a ten minute infusion, there are hours of waiting before the infusion for the cells to be defrosted. Then, after the infusion, another few hours of observation and IV fluids. It all adds up to a long, but exciting day filled with possibilities for Norah's future.

Norah was enjoying all the extra attention up until the tourniquet was placed on her arm, and she was held down to place an IV. From that moment on, she was hysterical until the infusion was complete despite Trey, the music therapist trying his best to keep her calm and relaxed.

When she was all done she was spoiled with some great Mommy and Daddy cuddles.

I don't know who was more exhausted Norah or her parents. 

Norah shows off her wounds from the day.

Now Norah is chilling in her crib, smelling up the hotel room. The stem cells have a preservative added to them called DMSO. When the cells are thawed and rinsed, not all of this is able to be removed. So once the cells are infused into Norah, the DMSO is excreted through her skin. Since the DMSO is corn based, it has that scent to it. We are affectionately calling Norah our little corn cake. We are so thankful that we are able to give Norah this opportunity ad pray the stem cells find their was to her brain over the next 3 to 6 months (that's the amount of time it take to get there, talk about a scenic route).

Exciting news, Norah has enough stem cells left for a 3rd infusion if we decide that she needs it. Even if she doesn't receive another infusion right away, it's nice to know she'll have those cells still available.

Thanks to Dr. Kurtzberg and all the staff at Duke, you have been so wonderful and helpful.

Stem cells

Time for Norah's stem cells!!

We'll update later.

Off to Duke

Jason and I brought Norah to North Carolina this week. We are here for a second time for a cord blood infusion  for Norah for her cord blood we saved at birth. We were here in early September for Norah first infusion. After that infusion, Norah perked up and just came alive. We have watched her achieve more than some doctors thought she would ever do and just want to give her the opportunity to become her best.

Norah and her daddy, cuddling while we wait.

Today we went to Duke University Hospital for Norah's screening and checkup. Norah weighed in 15 lbs 4 oz, she hasn't gained any weight from last weeks appointment. I'll just hope this scale is calibrated lighter and maybe she has gained a little weight. Then time for her blood to be drawn, my least favorite part of our day. Six tubes of blood needed to be drawn, yikes! After the phlebotomist looked for his spot, I switched into nurse mood. I held my little girl down like I hold down babies in the ER when I have to start an IV or draw blood samples. First stick, blood returned immediately, yeah! That was until the tube was filled and the next inserted, at the moment I saw Norah's vein blow, bummer. He left and found the lead phlebotomist to draw Norah. After several minutes of looking and warm packs applied to one of her ankles, here comes the second poke. After one repositioning of the needle, the tube quickly began filling, yeah getting another person to look and that took her time was a good thing! As soon as the tube was switched, Norah's vein blew, not again. You can see how the rest of the lab draw went. At one point I had to stop myself from grabbing the syringe trying to adjust it for the phlebotomist knowing that's how I would do it. Four pokes later, with only four of the tubes filled, we were sent home with one unhappy little girl and knowing more pokes will happen tomorrow to get an IV and the rest of the blood.

Norah was much happier after eating and a nap

Tonight we are praying that Norah infusion goes well tomorrow. We pray that her stem cells will continue to heal her and help improve her development.