Getting closer

One week from tonight, Web, Caroline and I will be in Omaha at the Comfort Inn Suites trying to sleep. Well Caroline will be asleep, because she won't know any different, but Web and I will probably be staring up at the ceilings. Actually, I will be keeping myself busy by packing an overnight bag for the hospital and Web will be playing solitaire on the iPad. Whatever we can do to avoid the inevitable. I know I won't sleep because we have to be at the hospital at 6, and I will be looking at the clock every hour on the hour making sure we aren't late. I still have images of what that morning will be like. I have images I haven't even shared, and I won't share. Just in case, plus they are sad. I have no idea if I have everything that we need. I know that her Easter basket plus all the goodies that go in it are in a box and ready to be mailed. I know that the hospital room has a DVD player, so Caroline and I will be watching plenty of Elmo! Or Mo as she likes to call him. Other than that, I really don't know much else. I have no idea what to expect, but I have talked to some moms that have gone through this similar experience and I know Caroline will benefit from the surgeries tremendously. But still the thought of her being under general anaesthesia for 4 hours, then another 6 makes me want to vomit.

Good news to report! Last week Caroline had a DEXA scan. She hated every second of it, but what 17 month old wants to lie still while a big machine is going over them?

We got a call from the doctor and he was so pleased with her results. I will spare you all the medical jargon. It can be too cumbersome. But long story short, her lumbar area shows a 75 % increase in her Bone Mineral Density (BMD)!!! 75% increase in one year! Hello! This is unbelievable. Now a spine is usually going to do 4 times better than femurs, but considering she can pull herself to a standing position I would say her femurs have an increase too! HOORAY! Seriously, this is great news. All the PAM treatments that we were hesitant about in the beginning are working! All the IVs that I have cried about, and Caroline has cried about have been worth it! Our doctor would like to think that her z score which was originally an -5 in probably more like an -2. But since we don't have all of the information from her 1st DEXA scan and this was a different machine he can't guarantee the -2, but he can guarantee a 75% increase on the lumbar area! He is very hopeful that when Dr. E does the rodding surgery next week he will see strong bones! Which as you can imagine will only help him in the surgery.

We will do another DEXA scan in 6 months to get a better z score, plus we will be able to compare apples to apples, since it will be the same scans as this last time plus same machine.

Web and I are so happy. We deserve good news.

I will try and update one more time before we leave. If I don't, then for sure once we have one surgery complete!

Thank you all again for your continued prayer, positive thinking and just thinking about us. We appreciate it all so much.

Love to all!