I know...we have fallen into a bad pattern of getting so far behind on these updates being on time!! And now it is almost hard to remember back to all that was going on, but I will do my best.

So May was a pretty busy month. Both girls were coming to the end of their school years and it was a little sad for me. For Cyann, she had just finished up her second grade year with one of her very favorite teachers. She was excited to be a third grader, but sad to say goodbye to her teacher and her friends for the summer. One thing that made it easier was that she was invited to a birthday/swim party for one of the girls in her class. That turned out wonderfully, because that little girl's mom was like the "Room Mom" for Cyann's class during the school year, so she was very familiar and comfortable with her. And actually, that party was the start of a very nice opportunity because Cyann was invited to come over every Wednesday and play with her friend. This was great, because it gave Cyann something fun to do for the four hours that I needed her to be 'out of the way' during the one day that Zoey had therapy back-to-back. It was a great win-win situation!

And for Zoey, as always, the main focus for her is therapy, therapy, and more therapy. I was so sad to see her last day of preschool. Even though she will still have one more year of it starting in August. I was actually a little emotional at the little presentation thing they had on her last day. Just because I know how much she improved over the course of the year, and how much she LOVED being there, and her teachers, and the kids. But most of all, I started tearing up because of how much they all seemed to understand and love Zoey, too. Just the way that she is. I didn't have to explain to anyone about her quirks and sensory stims or anything. I loved how some days when I brought her into class, the kids would just jump up and say "hi Zoey!" or even, "you look pretty today, Zoey!", and even though she never responded back, the kids just knew that THAT was Zoey. And they liked her anyways. I think I started crying because of the hope that there will be that kind of acceptance in the future, but the realization that there may not be.

So now that school is out, we are in the "thick" of things for the therapy. May was full of a "power struggle" with our DDD support coordinator. We were trying to get more hab hours approved to make up for not being in preschool during the summer, but he was reluctant to even let us keep what we already had in place! He kept coming over and saying that he needed "more documentation to justify the need for more hours", and each time, we'd have letters from doctors, hab providers, and other therapists to support our need. Basically what it came down to was that our support coordinator was a JERK!! Obviously it is well known that the state of AZ is running out of money and so they are trying to cut costs whenever and wherever possible. But this guy was RIDICULOUS!! And angry, hostile, defensive...you name it. Just so I wasn't reading him 'wrong', I asked a hab provider from the agency that we work with to be present at one of the meetings with this coordinator. She's been to countless of these meetings before and she was great to have on "our side" as sort of a parent advocate, just to make sure that we stood up for what we believed Zoey was entitled to, despite what this guy was saying. After the meeting ended, she was just as "worn out" as I was!! At least she confirmed what I thought all along...this guy was a JERK!! And she reassured me that NOT all support coordinators are like this.

We were lining up all of our information in order to get rid of this guy and request a new coordinator when we got lucky! A letter came in the mail that said new coordination units were added and that has resulted in "a realignment of cases"...we got a new coordinator!! YAY!! I am actually a little curious if the first guy was just as fed up with us as we were with him, because things did not end on a good note from that last meeting. But whatever...our new coordinator is AMAZING!! It's like we were stuck with the very worst guy to start with, and now blessed with the very BEST guy EVER. AND...it turns out that the first guy had so many things messed up in Zoey's file, no wonder we were not getting anywhere. He did not even have the copy of Zoey's diagnosis from the evaluation that clearly stated she has Autism!!! That is like THE MOST important piece of information of the whole file, and he never bothered to let us know that somehow it was missing this whole time! Obviously I have the original and could have easily made him a copy at any time he requested. There were other things missing and/or unorganized in her file, but our new guy got right on it and things are not only on track, but so much ahead of where we would have been. I can tell you that I literally wanted to jump up and hug this man for how much of an improvement he is over the first guy. :)

So in between trying to get Zoey's stuff set up, and then actually participating in the hab therapy at home, we have been getting everything lined up for Cyann's liver shunt surgery. Originally it was set for June 16th, but then the surgeon had to reschedule it, due to being out of the country. That really put a wrench in our plans, too. But no matter...it is now set to go for July 8th. I will go with Cyann to Tucson and stay with her, while Scott stays in Phx with Zoey. His mom will come out to stay and help him with Zoey as well. It's not that Scott couldn't handle watching Zoey on his own. But he will need a break every now and then. It's one thing to be home with your kid as "vacation time". But it's entirely something else when that kid has autism, and there are therapy appointments to be met, and hab therapy in the home to be kept up with. It's kind of a job all in itself. We are hoping that Cyann will heal quickly and that we will be back on our way home by the following Wednesday. We'll see...*fingers crossed*

I have noticed that we don't seem to have as many pictures as we used to for these updates. I think that is because of being so busy as well. Plus, there just hasn't been that much else going on!

Oh...for Mother's Day this year, I decided I wanted to get another tattoo. My last tattoo was about 13 years ago, so it's not like I'm addicted to them or anything. (unlike my husband, who also decided to get ANOTHER tattoo...this one of Freddy Krueger.) (I don't know why.) At least he is very good friends with the tattoo artist, Rick, and does lots of work on his website in exchange. Otherwise, these would have cost a fortune!! My tattoo was something that I put together from a comment someone said to me, plus a different take on the logo for Autism. The comment was something about how our family has as much strength, courage, and perseverance to do all that we have to do. So I knew I wanted those words involved somehow. Then I also wanted to use butterflies, because I've always had a "thing" for them. Plus, symbolically, butterflies represent change and transformation, which seems to suit the girls. Oh yeah...one butterfly to represent each girl. I wanted Zoey to be represented by the traditional Monarch butterfly, partly due to the orange on the wings to correspond with Zoey's red hair. But also because that butterfly has the black lines and white dots, making it rather complex, just like Zoey. I wanted a puzzle piece taken out of the wing to be a different spin on the Autism logo, which is puzzle pieces in primary colors.

For Cyann, I wanted her butterfly to be like one of those brilliant blue butterflies with the black trim around the wings. I think it really appealed to me because of her name actually deriving from a shade of blue. However for her, I also wanted to add some green to make more of a teal shade, which is the awareness ribbon color for ARPKD. I wanted it that way because she is obviously more affected by that than anything right now. (The blue butterfly has not had any green added to it as of yet. It was about a 2 hour tattoo and Rick wanted the blue part to heal up first before going back over it with the green, so that is yet to come.) Oh, and I chose to have it on my foot because I wear flip flops constantly (unless I'm doing a massage), so it would always be seen. Yet it was in a place that could be covered up if I need it to be. And, again symbolically, having it placed on my foot was a way to say that I am walking this path with my daughters and their issues. And for anyone wondering....YES IT HURT!!

So, that is pretty much the summary of May and June. We are getting to that bad part of the year again. I hate the heat, and I hate how the bills seem to go up, while work and income seems to slow down.