Therapy, therapy, and more therapy

So I promised some pictures last time. We don't have a lot of exciting pictures, but here are a few. And, no, I don't keep Brynlee in the highchair all of the time, but it is a convenient place to have her sit sometimes.  

Now if only we could get a picture of her smiling. Those are hard to get these days it seems. 

We, or I should say, I had a rough week. It felt like I was talking about Brynlee a lot all week and constantly being reminded of everything that she can't do. To be perfectly honest, I usually don't mind talking about Brynlee, and it doesn't usually bother me. In fact, I would rather someone ask me than just assume or come to their own conclusions. Regardless, this week left me drained and overwhelmed and tired of therapy and the reality of the situation. To top it off, we lost another cancer cutie last night, and my friend from high school lost her daughter the night before. She wasn't a cancer cutie, but they sure had been through a lot during her short life, including many hospital stays and surgeries on her heart, which doesn't even begin to describe what they have been through. I'm heartbroken for these families.

As for Brynlee, we are monitoring Brynlee's urine on a monthly basis as active tumors can excrete a substance that shows up in the urine, so this is just one way that can indicate if Brynlee's tumors are becoming active. After two attempts, I was finally successful at submitting these to our favorite hospital, Davis. Thankfully one of the nurses down at Primary's went out of her way to help me, and we were able to get it submitted correctly. So that was exciting, if you find that sort of thing exciting. Hopefully these levels will continue to remain within normal limits.

Tuesday we took Brynlee in for a well child checkup, her first one since being diagnosed. Brynlee's pediatrician has been wonderful and so optimistic. Other than the reminder that she is disabled, it was kind of nice to be taking her to what would be a "normal" doctor appointment that any child would be going to. She even had some of her vaccines and handled them like a champ, which she did feel by the way. I am more and more convinced that while her sensory function is somewhat diminished that it is still quite good, but it's that motor function that is giving us grief. Anyway, we should be able to take her in at the end of the summer for some more vaccines, and then she should be all caught up.

Wednesday was our normal physical therapy day. We had a really, really good session. Brynlee was showing off for our therapist and doing things that I've seen her do at home but that she hasn't necessarily done in therapy. I was so happy until our therapist started talking about her motor function and her lack of purposeful movement. It's frustrating. We just are not seeing a lot of improvement in her legs and feet. Her core muscles and hip muscles seem to be stronger, but further down is a different story. I left not feeling so great about it. Someone must think I need a lesson in patience is all I can figure out.

Thursday was hippotherapy, and we had another good session. At last week's session when my mom took her, she was very talkative and even let other people hold her blanket, which her blanket is her comfort. This week was good as well, and she did wonderfully. She must finally be getting comfortable with this therapy as she doesn't hide beneath her blanket anymore, and she actually chatters to the volunteers now.  

One more thing...I had a conversation with a complete stranger, a lawyer nonetheless, on one of my flights, and I thought I would clarify some things. He asked me, "So when do you get to go to DisneyWorld?" I asked him why we would go to DisneyWorld, and he, of course, was talking about Make-A-Wish. So let me clarify something on Make-A-Wish. We do not get to participate in Make-A-Wish because Brynlee is too young. You have to be 2-1/2 years old so that you can declare your own wish, so those of us with kiddos younger than that do not have anything to do with Make-A-Wish. I think I know what she would wish for, but they disagree. He continued to tell me that they are big supporters of Make-A-Wish and he and his firm had donated lots of money to them. Okay, thanks for the unsolicitated information. Anyway, I know I have mentioned this before, but I just thought I would share some of the organizations that have helped us. I know some people like to donate to different charities, and if that is something someone is doing by chance and wanted to do it in thinking of Brynlee then here are our top picks in no particular order. CureSearch, of course for childhood cancer research; HopeKids, we have been able to participate in activities with HopeKids that include our entire family, and I believe you can specify through United Way to send donations to them; Therapeutic Assets, of course our horse therapy; ARUP, blood donation here in Utah as they are the supplier of blood to Primary Children's, and I cannot emphasize enough how important blood donation is. As always, I encourage anyone who is making donations to any charity to do your research and find out exactly where that money is going to.