RockingJuJu

It has been a long time since I have updated this site. I find thatI write an entry while we sit at an appointment but it never seems tomake it off of my phone. Then it would seem when I do sit down to writeone here it never saves right and gets lost in cyber space.

Wow alot has happened since I last updated. Jacey has now been in remissionfor over 3 yrs! I am so glad to be able to say that. I can hardly waitfor the big 5 year mark to come. We are offically down to just 3doctors! I hardly know what to dowithout all the appointments. They are all just once a year now. Nochange in her heart or her eye. She still has the whole in her heartbut it has not changed and she still has no sight in her eye but oddspot has not grown. She has really started to dislike going to thedoctors as she finds this to be a huge waste of time. She says theyalways say the same thing so why go. You have to love it!

Shehas really become herself again but has changed so much at the sametime. She is pushing being a teenager and I can hardly believe she isgoing to be 13 soon.

We are just wrapping up our 1st year ofonline/homeschooling. It has been a rough year with that. She does notreally care for it at all. For now the plan is to continue on with itfor at least another year. She is still struggling to catch up. We areso much alike we butt heads all the time.

Jacey's Jesse finallymade it to Ohio. Jacey was just in heaven as she got to see him 2nights in a row. I was lost not having to drive 6hrs or more for her tosee him. Yes Jesse is still huge in this house...lol. He had a new cdcome out and we all fight for who gets to have it in their car. Inormally just buy 5 so we do not have to fight for it. I clearly needto get back to the Walmart soon. Jacey's new favorite song is BodyLanguage and I have to say I am just in love with it as she is. Jesseis heading back out on the road this summer and Jacey can hardly wait.

She will be returning to Camp Quality again this summer and shecouldn't be more excited about getting to go. It is a very wonderfulthing they do for these kids and I am so glad that Jacey enjoys it somuch.

Justin is nearly grown. I really don't know where theyears have went. He will be 18 any day now. He still has one year ofhigh school left so I get to keep him. He has what should be his finalsurgery scheduled for a few days after his birthday. What a present Iknow. It has been a long road with him and I have honestly just lostcount of how many he has had, I am sure he knows. This should be a funone. They are going to do his nose again and try to give him a cupidsbow on his lip. He finally got his braces off. He has had them on forso long I can hardly remember him without them.

Over all we are just a bunch of lucky people. It has been a rough few years but it has all somehow worked out in the end.

Jacey had an appointment with the eye specialist today. She really hates going there. I can't blame her I wouldn't like going as much as she does either. They always have to dialate both her eyes then she is blind for the rest of the day. The good news is there has been no change in the mystery spot. The bad news (and it really isn't bad) is he is still not sure what or why it is. Out of all of Jacey's doctors he is my hands down favorite. He seems more concerned about Jacey's comfort than his need to find out what is in her eye. I know many of her other doctors would have already been cutting at her to see what it is. There is no need in it. Removing it will not fix it, she still won't be able to see. Her other eye continues to have perfect 20/20 vision.

She had her 2 1/2 yr check up at the clinic. Everything was fine. I heard a lot more "We don't knows" when I asked about somethings that have been going on with her. All they knew for sure is that her counts were good and then referred me to a bunch of other doctors.

I think if you click the picture it will get bigger.

I wrote an update but hit the wrong button and it erased it.

Nothing that can't wait until later and I am really tired.

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