Back to the routine

It's amazing to think that we were actually looking forward to getting back to the hospital. When you are here and don't really know anyone, you just long for things to do and people to interact with!  Kayla met a really sweet little girl who is going through treatment at craft night last night. Her name is Ella and she is also 7yrs old. She just had a bone marrow transplant. She was here with her grandma. Kayla is really missing her friends back home. Anyway, its been really quiet over the holidays. A lot of people live close enough to drive back home when there is a 3 day break. The parking lot at the Target House was just about empty all weekend long. It makes it seem kind of lonely and boring without the usual bustle of people coming and going. The sweet noise of families enjoying all of the cool rooms that the Target house has to offer. Now that the holidays are FINALLY over, we can enjoy the comfort of all of the faces that at one time seemed overwhelming, but have now become comforting.  We haven't really made any true friendships yet. I know that will come in time. For now, we all just sit in the waiting rooms together, pass each other in the hallways, or wave in the cafeteria.  There is a special comfort in knowing that everyone here knows what you are going through.  You find very few people who aren't willing to share in their journey. We all like comparing different approaches of what has helped as far as relief for different symptoms. There was an Amish family here recently (which was quite a site). They seemed to bring their entire family with them. They did keep to themselves. We were impressed that they would be ok with this modern medicine. Even the nurses said that they are starting to come around a little. It depends on which denomination they are in though. Some find it God's will and never treat the child while others have taken a more modern approach.

Before Kayla's bath last night. I had a feeling this would be the last picture of her with hair for a while

Kayla is doing really well today. Her spirits are high and she was in a good mood. Again, she had everyone cracking up. With each appointment, she needs to know exactly what is going on. Step by step. She asks 100 questions. She gags at the smell of the alcohol wipes. (yet she likes the smell of gasoline... go figure!)  Everyone just loves her. Her hair is continuing to fall out. Oddly enough the only areas where the hair seems to be not even thinning are where her probes were during surgery. It's like super hair. She is so tired of the hair getting everywhere though that I am finally convinced it's time to shave it. She is very excited and telling everyone she sees. "My mom is shaving my head today. I am SO glad." They all just nod their heads and smile. It's as if she is excited to finally be in the normal club around here. I never would have thought of it that way. It's as if now she feels like she fits in. So funny! Her scalp is pretty dry though. We meed with Dr. Pai and Gajjar today so I will ask what they recommend. They are very specific about what is allowed to be used and not.  We should be finished with our appointments by about 4:00 or so today.

 More Pics from Last night:

Daddy changing Kayla's bandages after her shower. She hates this part. She has a serious sensitivity to the tape (even though it's hypoallergenic) You can see how red she is. Then, we have to use alcohol and chloraprep to sterilize the area. It stings really bad.

Minutes later she is smiling and eating her Couscous. 

 

This Morning during her weekly blood draw

Kayla does NOT like the smell of alcohol wipes. She is flinching over just a smell here.

Kayla watching each and every step asking a thousand questions about what and why.

Happy to hitch a ride in Dad's arms all the way to the cafeteria from Radiation

The nurses think I should shave everything except for that little tiny tuft in the middle. Kayla says, "No way!"

After we had lunch, the three of us headed on over for OT (occupational therapy). Kayla loves this room because they make exercising her neck fun! Today Kayla got to paint a painting on the wall. The object was to have to look up while she painted and to look to the side to put the paint on her brush. She did great! Her mobility is SO much better!! Finally :)

After painting her picture (which was really hard to do with that thick brush they had), Kayla couldn't wait to read a few pages of her journal entries to Ashley. Ashley was so impressed with not only her handwriting, but also her story writing abilities. We think she is very talented.

Tonight, they are having a spaghetti dinner in Target House II. I'm not sure what we are doing. First things first, I have some hair to shave.