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Today was pretty uneventful. We arrived at clinic around 930am and began the day with a CBC. Shortly after the CBC was drawn we had a three step blood pressure screening. Laying down, sitting, and standing up. All of which turned out to be within normal range. The NP came in and we discussed all symptoms and then she gave Mikayla a head to toe exam. She noticed that her right ear was a bit red and that her gums were a little pale. Not much was made about the discoveries as they really didn't present to be the problem causers. After Mikaylas check up the NP left to get the doctor to have him take a look and to give some insight as to what he thought the problem would be stemming from. The doctor asked some questions and tested her fine motor skills. She checked out and he then listened to her heart. All seemed ok. The doctor said she doesn't seem to have any neurological problems and that he was 98% certain that our ECHO and EKG tests scheduled later in the day would not give us any insight as to the cause. He said he was a bit baffled as to what to tell me is causing the symptoms and that since she has not been dizzy since Sunday that things are most likely settled and it would go away. We have to wait for results on the heart for a few days, but I was felt better as a parent knowing that I am at least getting tests and not hanging out with my hands in my pockets waiting for something bad to happen. With no signs that we had problems in the ECHO and EKG room I had begun to think that maybe it was just something like a fluck. Maybe lack of sleep or a previous infection that only recently burned off. We left the hospital around three in the afternoon and headed home. About an hour into the drive we pulled in to get gas. Mikayla was asleep in the back and had to be woken up to go inside with me to pay. From waking up to getting out of the van happened in the span of like five minutes. Before getting out I asked if everything felt fine and if she was dizzy she said all was ok. Her first step she took there she went. She began to fall right away as if she had no control. It was forward and to the right and she had no idea she was going down, she thought she was still walking! I grabbed her before she hit the ground and asked what happened and she said what do I mean. I said you almost fell. She said oh, I don't know maybe I was a little dizzy. This is the first time I have seen it happen from start to end. The other times she has fallen, I have only noticed when you hear a thud. It is a bit odd. She has always said that she was dizzy after the fall and that is the reason for it happening. I don't think that is the case. From beginning to end she never knew she was going down and a few seconds before hand she said all was ok. I haven't shared this yet with the doctors. I told them today that she falls because she is dizzy. They are trying to figure out why she is getting dizzy, but that is not the case. I don't think she gets dizzy, but blames dizziness because she has no other explanation for us or herself as to the cause. Can your brain just shutdown motor skills at will, but give no advance signs. Signs that can be detected by looking at motor skills? The docs will think I am nuts now when they find out what I seen and what is in my head. They still don't know what to think in the matter and to add to that the fact that she is not dizzy before it happens really will throw them for a loop.

Mike and Kk are in the clinic right now for labs and exam. She will have a lot of tests this pm. Thank you all for the prayers. We will update you later. Thanks.

Tests coming

On Thursday we will finally get some peace of mind. Mikayla is scheduled to run a small gamete of tests to see what may or may not be at issue. The tests are focused in on her heart and blood pressure. From our brief discussions with her team that is the area that they want to check first. Her issues still are not major, but the fact that she has issues makes you worry. I think the tests will help our growing concern about her status and has allowed us enough time to prepare for any outcome.

A Little Bit Different

Last week Mikayla woke on Saturday dizzy and nauseated. At the request of the on call Hem/OC we took her to Kansas City for testing. They pulled a CBC and checked her vitals and wrapped it up by saying monitor her, its probably a virus. Today same thing. I called her NP. The NP confirmed with her BMT Dr. and it was agreed that we need to monitor her. Tonight she gets a nose bleed, not bad, but still it was out of the blue and had not happened since last summer. We call the on call BMT NP, guess what, monitor her. ?@#$#@? When do we quit monitoring and start finding out what the problem is? It could... be a virus. It could... be her heart. It could...., well hell it could be anything from something minor to major. At what point do they actually decide we do or don't have a problem. If you hear a knock in your engine what happens if you ignore it? Maybe it goes away or maybe your engine fails. Are we that different? Wouldn't rather know what is causing the knock, or would you rather take your chances and hope the engine does not fail. That is how I see it. Why wait and see if she has some kind of failure instead why don't we see what the "knock" is. It's probably... blah blah blah. Probably is not good enough and I have voiced that opinion and it fell on deaf ears. I have very very high regards to my BMT team especially my BMT Dr. I don't do anything unless it comes from him directly. If he says monitor I guess we monitor. I just don't like waiting to see what will or will not happen.

Mikayla

Well its been about a month since the last post and things are still on the same path. She is doing pretty good. Her skin is starting to blend and her hair is longer than most mens. She is engergetic and cherry.