one day at a time

Getting Kayla's dressing changed tonight here at the TH for the first time (she doesn't want to look)

Today was a very emotional and long day. It makes me really appreciate the good days (like yesterday) that we had. Today, Wednesday, started out early again. We were up and at em' and to the hospital by 8am for her first appointment, an eye exam. Kayla woke up very hungry this morning which made it extra hard. Denny and I kept telling her that this is why it is SO important to EAT while she can. Gone are the days where it's all about healthy eating. Now we are just trying to not only get her weight to stay where it is, but go up! We're talking a deep fried stick of butter kind of diet! (eeeew, right?) The problem is that her stomach has shrunk so much from being NPO every morning before radiation. As soon as she can eat, we are constantly asking her to eat things. It gets to the point where she is so annoyed with us asking that she ends up in tears. It's horrible. I feel so bad, but we told her the alternative is another NG tube and that would not be fun! Her taste buds are changing. She thinks she wants something and takes a bite and decides it's disgusting. So, it's a challenge! We are also seeing a few more symptoms from Radiation. She has been having a lot of cramping in her arms, legs, ankles and hands.  Her stomach has been cramping up a lot too and she is having a lot of incontinence. We are (sadly) hoping it's a virus. If she has to deal with that for the duration, it will be so sad. She went through every single pair of underwear today. They are running a test on what we could collect (thank you Dad). It will take a day or two to find out. For now, we are just keeping her hydrated as much as possible. That wore us out. We did get to go to Target store today! We needed pillows. Even after the ones we boosted (with permission) from the hospital, Denny and I were having neck and back issues. They are horrible. Kayla is the only one with a decent one. So, at least we could get something a little better to get us by. My dream pillow is waiting for me at the temperpedic store when I start working again.  For now, target will do! Again, THANK GOD we had a car. We got back to the TH and got Kayla bathed. We change her dressing over her double lumen Monday/Wed/Fri each week (or if it gets soiled or wet). So, there we were all ready to change it and we realized that two things were missing from our kit! So, off I went to the hospital to pick up the missing pieces. If I had had to call the shuttle and wait, it would have taken twice as long! So, again, that car ROCKS.

Here is Kayla at her eye check up. She had her eyes dilated for the first time. All checked out fine! That's a blessing.

 Getting the drops in to dilate the eyes

Houston, we have lift off! Those are some BIG pupils.

After her eye appointment was over, we went down to radiology for our 6th treatment. Today we tried to eliminate the Motrin from being given PO before her appointment. It didn't go as good. I think giving it two hours before so that it's peaking during treatment is key. Mommy will add it back in tomorrow. Today was rough! I did get to watch as the treatment was being given. It was kind of cool and kind of scary too. They were so at ease and so familiar with what they were doing. That was great, but I just explained that this goes against everything I have ever done to try and protect my baby. Here we have always surrounded her with healthy foods and protected her from anything that could harm her. Yet, there I was.... staring at this video screen watching as these laser beams were targeted at her brain and spine. It was awesome in a techie sense... but horrifying from a mommy stand point. With tears welling up, I just said out loud, "I can only hope that this temporary harm will give her anything but a temporary life".  The tech just stood there for a second and smiled in agreement. I think that is every parents hope here.

Once Kayla woke up, she was in a lot of pain again. That was when we realized that Motrin needed to be worked back into this tomorrow. I hope and pray we have the perfect combination again and tomorrow she wakes up not crying out in pain. We wheeled her into the cafeteria. Dad takes the long way around to avoid the smells that make her nauseous. I went and got what she requested, grilled cheese. The Grill wasn't quite open so I patiently waited. Secretly I wanted to scream at the cook who was just standing there waiting for the clock to tick for 5 minutes that my baby is STARVING. Literally. It took every ounce of strength to just stand there and bite my tongue. I grabbed Kayla's food and almost ran to get it to her. She sat in the booth with dad clutching her head sobbing on and off. She was sipping Apple juice. I told her she needed to at least eat half of the sandwich. She almost did. She can't even eat a half of a grilled cheese without getting stuffed. Her tummy is just so small. Den and I just looked at each other taking deep breaths and walked over to E Clinic to see her nurse, Lizzy. We needed to tell her about these new symptoms. She then ordered the tests, drew some blood and we were on our way. E clinic is one of our favorite places to go. Lizzy and Dori ALWAYS make us smile and laugh. No matter what mood we might be in when we walk in. They are amazing.... It makes me tear up just thinking about them. I need to find a way to tell them that quietly one day. 

After seeing Lizzy & Dori, we went on over to our PT and OT appointment to get Kayla's neck moving. It was hard for her, but the girls made it fun with games. In PT, we played Sorry. They had Kayla lay on her tummy propped up on her elbows. It was good to see her having to stretch to move her pieces. 

In OT kayla was really stretching and reaching doing this magnet game. It was great! They are both hoping that between OT and PT they can see her most of the days of the week. She needs it. Even though it was really hard and painful for her at parts, she enjoyed it.

When asked if she had it in her to do one more set or 5 more minutes, Kayla ALWAYS says yes. She is such a good student. We are always so blown away at her perseverance and strength. She teaches US to be tough too. Even though we don't always see it that way... its in those moments she blows us away. We love you Kayla.  Mommy and Daddy (and everyone who continues to pray and follow your story) all hope you have a better day tomorrow. Much love baby girl.........