Archives for February 2016

She’s In — Clinical Trial

We have been trying to get Bethany into a clinical trial for cystic fibrosis since fall. Well, she finally got in and we are so happy. Today was Day 1 for her and it was a long day. Her appointment lasted 10 hours. It really did and that is a long day for a 9 year old. It was long to me!

She was exhausted by the time we left the hospital. She was hungry and asked if I could get her something to eat. So, while we waited for our car, I got her a kid’s meal from Wendy’s. We got in the car and we had been driving about 5 minutes and I asked her something and she never answered so I asked again. Then I realized she was sound asleep. Exhausted from such a long day.

We go back tomorrow, but it will be a short visit. We think it will be worth the time spent and hopefully this medication will benefit Bethany and other children that have cystic fibrosis — though we don’t even know if she is getting the “real thing”.

Though the day was exhausting, Bethany really was a trooper. She has a cough and she could hardly do the spirometer without coughing until she gagged, but she kept on trying and trying as it had to be done. There were several blood draws and, of course, she wasn’t thrilled with that, but said nothing while the nurse stuck her — though she did ask several times how many times were they going to stick her. But, she really did do well considering how long we were there and how many tests they had to do. 



How Are The Girls Doing?

I am asked frequently how the girls are doing so I will try to give a short update. Tess seems to be more independent than Piper and also a little more stubborn. She seems to know what she wants and is pretty determined to get it. She sometimes has an attitude with me and she lets me know she is angry. But, she then turns around ten minutes later and hugs me and acts like nothing happened. She holds no grudges. 
Piper seems more outgoing and personable, but she actually is pretty unsure of herself. I notice that she always looks my way to see if it is ok to do something. Even when doing something as simple as getting a glass of water, she looks my way to see if it is ok. Strangely, she gives the impression of not having a care, but if you watch her you will see how unsure she is of so many things. Bedtime seems to also be a time of concern for her. As much as she smiles during the day and as wild and loud as she is, when bedtime comes she is extremely quiet and always has this look on her face that I can’t totally read. It is like she is scared, but maybe more mad, or actually kind of like she is not truly a part of what is going on — like she is on the outside looking at what is happening. I can’t really explain, but it is the one time of day that she is not her smiley self. I sit on her bed and talk to her and try to rub her back and make sure she is ok, but she really doesn’t respond to me at all. She doesn’t even fall asleep when I rock her — except a couple of times. But, the next morning she is all smiles and hugs!
Tess seems pretty smart and we have started giving her math to do. She actually comes to me now and asks for several pages. She is great at addition and subtration as long as she doesn’t have to borrow or carry. And boy is she fast. She can do two pages of addition in a matter of minutes. Tess also goes to sleep so well and so quickly. She will climb up on me and I will rock her for only 5 minutes and she will be sound asleep. I usually end up carrying her up to bed. She is asleep every single night by 7:30. Tess seems to thrive on routine. 
The girls still fight a lot. They run and play and then they are at each other yelling and kicking. A lot of the time Piper ends up on the floor crying and crying because things didn’t work out her way. Today Tess actually gave Piper a bloody nose. I’m not even sure why Tess was so angry, but it seemed like it was over a glass of water and all of a sudden Tess was kicking and then she hit Piper in the face and the blood started pouring out. I think both girls were shocked! Piper started screaming and Tess just stood there and watched. It only bled for a few minutes and everything was fine. They were back running around in no time. 
I still have so much to learn about them. I’m not even sure that I am reading them correctly right now. It just takes time and we haven’t been home very long. But, things are going pretty well and for the most part the girls are adjusting to their new home. 
I have some pictures of China that I never posted so decided I would post a few last pictures of our trip to get the girls. It was an adventure of a lifetime for us, but I was so glad to get home.






Sign up to receive posts from dearlittlegirlofmine in your email