Wednesday, July 24, 2013

Week #19

 
I can not believe a week has passed already! It feels like vacation just got over, although I know it didn't. The last week was mostly uneventful, aside for Brayden needing several doses of oxycodone after it was clear he was uncomfortable. What's hurting him? I have no idea and probably never will,  but I do know the oxycodone is working so I'll take it!
 
On Sunday we went to the lake for a little bit, but Brayden clearly wasn't having fun so we didn't stay too long. He sat on paw paws lap and ate ice and then rode around with maw maw in the nose of the boat for a bit. I think he was relieved to get to take his jacket off and get back in the car.  
 
 

Yesterday we had our weekly clinic appointment so Brayden could get his labs drawn. ANC 250, platelets 59, and hemoglobin 10. His hemoglobin is good, but that platelet and ANC count is not good. He is neutropenic (again) so we will be mostly hiding out until next week. Before they called with his labs we went to the Legends and did some shopping. Brayden got some fall clothes, and a new pair of shoes. I was VERY surprised to learn his foot is a size 6. He looked so big walking around the store in his big kid shoes. It seems like it wasn't that long ago that my tiny 4lb preemie was born, but he is growing up fast! Unfortunately while he was walking around I noticed that his right foot is really turning out, and it seems to be progressively getting worse.
 
Today when our physical therapist came I asked her about it. We hadn't seen her yet this month because of vacation, so she stretched Brayden and did some range of motion. She determined that his right foot isn't flexing as much as his left, and that could be contributing to him turning that foot out. I feel like the turn out is starting to inhibit his ability to learn to walk, and that is one thing he REALLY wants to do. That being said, Brayden will be getting fitted for some AFO braces for both feet. I have mixed emotions about it, but ultimately I feel like it's the right decision, as long as he doesn't cry hysterically every time you put them on. I am hoping that our Early Intervention company will pay for them because they are about $1500 for the pair, and a pair is only good for around six months. I won't know that for a couple of days and it will take about 4 weeks to get the braces because they will have to make a mold of Braydens feet (that should be fun) before they can make them.
 
 


On a happier note, we got Brayden's Logan bear in the mail over the weekend! It is very cute and very soft! Thanks to everyone who donated so he could receive his bear.

Brayden's MRI is coming up on Monday and I am starting to really get anxious and emotional about it. I desperately hope that the MRI will show no growth and that we will be able to continue down this relatively easy path that we are on. When I say easy, I mean that the decisions up to this point have been easy, and that the chemo protocol is mostly easy. Watching the nurses stick him every week, watching him sleep the days away following chemo, watching him vomit, watching him cry because he is in pain, and watching his appetite decrease, none of those things are easy, but I have learned to deal with those things.  I mean that the decision to treat him with chemo was easy because it was the only option, and this type of chemo has been shown to work the best. Since Brayden is tolerating the chemo (mostly), the decision to continue treatment was easy. We only have to go to the clinic weekly, and we haven't been admitted recently so that part has been pretty easy too. (I feel like I should be knocking on wood as I type this.) In my mind, I know that if the MRI shows growth then the upcoming decisions won't be "easy".......



 

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