Caring For Kendall: October 2013

Kendall has been doing wonderful in school. It takes some convincing to get her out of her funk in the morning but once we are out the door, she is so happy to be going to school. Yesterday we went on our first field trip together. It was to the pumpkin patch. I'm so grateful I was able to go with her and her class.

Medically, Kendall has been doing alright. We have been free of kidney infections for awhile now. I started a new medicine a few months ago that seems to be helping. I have to flush her ureterostomies with a liquid antibiotic every day. It is not an enjoyable experience for her but it seems to be doing the trick. We have recently had to go up on her methadone even more than we did over the summer. I think her pain has been increasing. I can usually tell just by how grouchy she is. Little kids can't always tell you what hurts and how bad so it tends to come out in angry outbursts. Braden and I have had a few talks lately where I have tried to explain to him why his sister is screaming at him for no reason. It's hard for him to understand but I think he's doing a good job at trying.

It has worn on my soul to have to watch her suffer. No parent likes to watch their child in pain. Even things like holding your baby down while she gets a shot, can wear on a parent. I know I still have a hard time doing that with Tanner. Daily I have to hear Kendall scream "ow ow ow mommy. HELP!!!" and I just have to sit here helpless. At times she doesn't even want me to touch her because of the pain. It's just hard for all of us. Luckily, we have a great team of doctors who try very hard to control her pain. Right now we are struggling with sleepiness during the day because of her increase in pain meds. There is never a perfect solution so we just have to make the best with what we can do for her.

Oral feeding progress is going slowwwww to say the least. She is drinking much more fluids lately but still has little interest in taking bites. Pill swallowing is also pretty stagnant. I'm starting to lessen the importance of this clinical trial that she has the opportunity to participate in. I don't want to be disappointed when it doesn't work out, so I'm just sort of ignoring that it is approaching. I really don't want to have to shove a pill down her throat twice a day.

Here are a few pics or videos of our last few months.

Kendall's version of ABC's

What we learn at school

Painting our nails. You can tell who was responsible for mine

Kendall's first field trip to the pumpkin patch

Our first trip in the wheelchair to the Children's Museum. She actually stayed in it for the hour and a half we were there. I was exhausted but not from this one....