A photo post

Keyan had a pretty good morning. She was more verbal, interactive, and was actually giggling during physical therapy. The therapy sessions are so good for her but they just about kill me. Not only is it quite hard work for her but after it is done the therapists give you a report and tell me how wonderful she did sitting up, reaching for things, trying to roll a ball, ect. OK, that might be wonderful for them, but everyday I just want to scream, “do you realize what she was doing 10 days ago?” I know that I need to take on their attitude instead of mine…theirs is so much more optimistic, but there is nothing like a therapy session to force reality in your face. Oh well, I am working on letting that go and focusing on the now…I will have to let you know how that goes!

The afternoon was a rough one. She had alot of pain and ticing that we just couldn’t get under control. It is so hard to see her writhing in pain but again I have to know that I everyone is doing the best they can for her. The day also brought the news that her hemoglobin is starting to get low so the blood management team came to see her and had some recommendations. One of those is an every other day, 2 hour infusion of iron through her IV. It isn’t that big of deal except for the entire two hours she has to have her vitals checked every 15 minutes which got VERY annoying to her VERY fast. She managed and hopefully her system will respond so we can avoid a blood transfusion.

The doctors also ordered x-rays of her arms, legs, and pelvis on the off chance that she has some sort of fracture that is causing this pain. The fact of the matter is that because she is on TPN she runs a higher risk of bone fracture…great, just another thing. More than likely, there were none found because that was a couple of hours ago and I haven’t heard anything, but you never know. The other thing that they are doing is a renal ultrasound…at least they are supposed to be doing it, it is currently 9:05pm and there has been no sighting of the ultrasound people! Again, they are just checking for kidney stones or some calcification of the kidneys because her back her been giving her a lot of grief. The doctors will fully admit that they are fishing but I would rather them do that than do nothing…besides Memorial Day weekend is a good time for a fishing expedition!

The greatest part of the day was that Paul and the kids came up after school. It was great to hear their voices in the hallway and see their happy faces. I cried when I gave them all hugs while they we using the hand sanitizer, and cried on and off while they were here. As unfair as this life is for Keyan, it is equally unfair for those left at home to worry. All I can hold on to is that someday we will all be better human beings for what we have been through. Keyan has changed our lives and will continue to do so. Jamahl got a little frustrated because he could not understand Keyan since her speech is a little slurred…you have to know that he prides himself in always being able to translate for his sister. He was a trooper though and read some books to her and sat by the edge of her bed most of the time he was here. The girls just carry on while they are here but they include her in their banter. They usually all climb on her bed but this time we did that just one at a time. She was very happy to see them, but it didn’t take long for them to overwhelm her.

As we start this long holiday weekend, I can’t help but think about the fact that over the last five years there aren’t many holidays that we haven’t been in the hospital. As people start planning for their pool time and cook- outs, I am trying to figure out what I am going to eat because weekends in the cafeteria are horrible. I am going to stop with the pity party, but if you get a chance this weekend spend some fun time with your family for me!