Pot Luck.

Okay I'm just going to ramble on in no orderly fashion to update what is going on RIGHT now with our family.


Makily is going for a 48 hour EEG in Orlando at Arnold Palmer's on Jan. 23rd. I think Allen is going to try to take off work so we have someone to take care of Jakob while the other of us is in with Makily. Allen offered to be the one in the hospital with her but I just don't think I can do it. I've been to EVERYTHING she's ever had and so I can't NOT go. Since the seizures started back up and the new med was added she's sleepier than usual (and the school has even went so far as to say they see a regression) and I want the meds adjusted or changed to help with that. Her EEG's have been abnormal for over a year now. She has no stamina. Her strength is the worst it's been in a while. She was sick for 11 days straight and she looked so crappy I could barely look at her without crying.

Jakob is doing well but still very behind speech wise. He's trying his best though and so we are very proud of him. Recently he has actually sat and snuggled with me or Daddy for 15 minutes at a time. THIS IS HUGE because that was something just six months ago he COULD NOT and WOULD not have been about to do. He's still a handful and a half though and keeps us all on our toes.

Allen is awesome as always. He makes me laugh and knows how to cheer me up. He's been really supportive the last month or so that I have been struggling. I'm honestly not sure how I got so lucky with him. He bought Makily flowers last night. Made me BAWL. She loved them. I couldn't be more grateful.

I'm doing alright.

Lie.

I'm a wreck. Facing another hospitalization with her just puts me back in that "anything can happen to her at any moment" mode. It stinks. Today she had what Allen believes was a seizure. Her right eye turned COMPLETELY OUT while her left stayed "normal", she was very still and Allen said he just sat there holding her hand telling her it's okay. It lasted maybe 30 seconds. Then she acted totally normal so I don't know what to think. I just hate dealing with ANYTHING to do with her brain. It scares the hell out of me. I still hate being responsible for giving her a medication that effects her BRAIN FUNCTION. Makes me so nervous and always has. There have been a couple of times I've drawn all her meds up and then started to question if I drew up the seizure med or her robinul twice (those two are clear and she gets the same amount of each). When that happens I just dump them both and start over. It's a lot of pressure that I don't usually let myself focus on. I'm sad she is getting bigger, older and heavier. It's getting so hard to lift her in certain situations. I hate it so much, it makes me want to cry.

I was on our local radio station recently. I am helping to coordinate the Chromosome 22 Central Conference. Robin and Larry let me come on and talk about Makily, ES and other Chromosome 22 disorders. It was really an awesome experience. I was pretty nervous as I had never done that before and was afraid I would get emotional and not be able to get myself back together. I did much better than I thought I would. I had a rough morning before I had to go on so I mentally was struggling but went anyway and was proud that I did. They had it up live on their podcast so there is video of it!



I am going to get over to the hotel we are looking at this week to try and get a contract written and final details for that. Believe me I will update the closer we get and once we have more things set in stone.

I'm still looking for a new shrink. I called some this week and got lots of voice mails. One did want to help me but she said the doctor I was calling about wouldn't be that good of a match for me but that someone else in the office would. She would have to see if that doctor was covered by my insurance. That was two days ago and I haven't heard back. sigh.

I bought the dog a dress this week and she still has it on. I was shocked she liked it and didn't try to rip it off.

Yesterday I went to check my blog and was shocked to find blogger had deleted it. Or so I thought. It said something like this blog no longer exists. I have been blogging here since 2005 and so I was in a total panic to figure out what happened. The thought of not being able to retrieve it was horrible. After trying to sign into my gmail which is how I sign into my blogger it told me that there had be fraudulent/suspicious activity on my account. It made me change my password and THANKFULLY my blog was BACK. So lesson learned here is that I MUST keep blogging regularly. I think this will be a wonderful keepsake for my kids. They will get to know me in a way they never would in having this. I plan on printing out all my entries and making a book for them one day. I went through some old things on my blog the other day THAT I didn't even remember, so I'm glad I have it all here.

I'm back....or at least I'm working my way back.