I'm pretty sure thins are starting to settle down a bit for us now. I'm starting to feel quite a bit better. I'm in a little pain. I wouldn't describe it as pain compared to how I did feel though. I'm uncomfortable. I had been scheduled to have the lithography on Tuesday. I was stoked. Finally, one step closer to feeling better. Well, I was at the appointment and the receptionist called our insurance company. They said they hadn't finalized things yet, so the doctor's office4 wouldn't do the procedure. Apparently, the procedure costs about $5000. If I was an insurance company, I wouldn't want to pay for that either. So the procedure was cancelled and I came back to the hospital. John got on the phone with the insurance company and gave them some thick words. I swear in total I have spent hours on the phone with the insurance company. John gets on the phone with the insurance company for two minutes and they say everything will be okay. So I have to reschedule the appointment for next Tuesday because they will only do the procedure once a week because the machine in so expensive. Here's hoping we won't have any problem.
Katlyn is doing a lot better. She is acting a lot more like herself, now that she is getting some more sleep. Her new central line seems to be working ( let's cross our fingers that we have no problems). They have drawn quite a bit of blood from Katlyn since we have been here. Actually, an over abundance. I let her nurse know tonight that I didn't want any blood drawn in the morning until I talked to the doctor. There is a limit of 7cc per kilo for a six week period and they are almost at their limit now. We haven't even started the gene therapy yet. Johnathan and I just don't want something like this to compromise Katlyn's health. Her neutrophils did drop when she started her antibiotics (to 1300), but now she's back up to 1700. I'd say it probably had to do with the fact that she was fighting an infection. She looks so great though!!!
I went shopping for some new clothes for her today. When we first got here Katlyn's dirty clothes were taken out when her room got cleaned. We kept asking about them and people kept saying they were looking into. Well, when the cleaning lady came in we ask her about the clothes, and she let us know that we'd never get them back. They actually go to a huge cleaning facility. So, Katlyn had almost nothing to wear. Luckily the Children's Inn gave us a $100 gift card for Old Navy. So, I went today and got her a bunch of very sweet things. I'm going to wear her new dress on her tomorrow.
The mall I went to was very nice. I thought it was great. When the taxi picked me up, I expressed to him how much I liked it. He said it was a low-class mall. If I wanted to see a nice mall then I should go to Montgomery Mall. I told him if I was window shopping then maybe, but I had to buy some stuff and we definitely can't afford to shop expensive. Bethesda is such a rich place. I'm not even kidding. This place is rolling in diamonds. ha ha!!! It's beautiful, but very very expensive. I did get to see where the president goes to see the doctor today-- right across the street from the NIH.
We are so homesick right now. It really didn't help that all of this crazy stuff has happened to us within the first week of being here. It's not that bad here. Now that we are getting used to it, I do like it. The way I see it, is that we have to spend this time here in order to get our little girl home. As much as I love the IWK, I still don't want her there. I want to be home with her so badly. That day will come soon.....I know it will....and then we'll have the rest of our lives at home.