Keep on keepin' on...

Well by this time I had hoped that I could be updating you on either my bone marrow transplant or at least a date for it. But alas, I have neither to give you. Apparently my doctor has another PNH patient who will be going through a bone marrow transplant (bmt) and my doctor would like to coordinate us together. Convenient for him, but a pain in my ass. I was told now that it could be August or September... that makes me think maybe December. ;) I must say though that I have been feeling fairly well. Still have my daily headaches, but I can manage those. And have been tired due to a Hgb level of 8 as opposed to my usual 10. I am getting over a nasty cold though, so that could be part of it. I do have to say though that my latest pap came back with dysplasia. After a lovely colposcopy the result are back as mild dysplasia... which is basically pre-cancer. Granted most cases either go away on their own or are extremely treatable, but I am finally going to admit that my plate is full! So for a year I have to go back in to get checked out every 3 months. Im gonna share a little tmi here but, I got pretty irritated when I got this dysplasia thingy... I mean I have only been with 1 man... the lovely hubby, AND we actually waited till we got married! (I know... weird right?? What was I thinking?? lol j/k) I still don't understand why all this is happening to me. I know there is a reason. I just want to know what it is now. :) Don't we all, don't we all.

Little Z is as happy as ever. I do feel that he is starting to get frustrated though. He wants so badly to get up and go but his body just doesn't cooperate due to the cp. In good news his EEG came back and he is NOT at risk for seizures. There is parts of his brain that are abnormal from the bleed at birth, but nothing is different. B has been wanting to contact our lawyers about Z's cerebral palsy. He still feels that it could have been prevented and wants to check into seeing if we have a case or not. I myself don't even remember that time so I have no idea what to think. But my gut has always been to think that his condition is my fault... not that I could help it, but my condition may have caused it. Z's ped. neauologist wants to start Z on botox shots. He would need them every 3 months. Apparently botox is injected into muscle groups and could potentially allow him to have more control over his movement, and therefore help him crawl or maybe even walk. Hope is nice... I like hope. He also talked about casting Z's ankles in a 90 degree angle (when he bears weight on his feet he becomes a ballerina, pointing his toes) they would cast them for about 3 months and then hopefully this would give him an advantage if walking becomes somehting he can do. I want it all to work so bad. I'll admit, I want that magic wand to be waved over his head and have him jump up and come running toward me. I still believe he will do everything... and I'm ok with the fact that it could just take alot longer.

Apparently sometime today my not-even-a-year-old-car was hit by someone. I got out of my car to go into the grocery store and noticed that my rear left bumber was crushed in. That's great. Most likely happened in the walmart parking lot earlier. I went to walmart thinking that they could check the surveillance parking lot camera's for me... but no. I have to file a police report first and then the officer may go check out the tapes. So I am awaiting a police officer to call me back to get the details. We have either a 500 or a 1000 dollar deductable as well. Fun for me. 10 years driving and my first accident is a parking lot hit and run.

My insurance changed as of July first. Now instead of having to pay 50% of every office visit I get to pay 100%. Now everything else is covered... we can get procedures and surgeries and hospital stays till we're blue in the face. I just can't go see a doctor. And with Z's condition and my condition well... lets just say there is now financial stress as well. Me having not worked in over a year definitely doesn't help.

Here are some of his 1 year pics... a little late, but oh well.


Thanks to everyone who commented. I apologise for my posting delay, I was just waiting for something good to report. Sometimes I have to remember that "something good" may take a bit longer than I'd like. Hope your all well.

-Lucky Girl