Sunday, May 31, 2009

The Oregon Zoo!

We spent a good portion of the day at the Oregon Zoo. Jose, Jovanna and I went to the zoo for a FACT (Families and Community Together) Resource Fair where I also had a table set-up for Oregon Family Support Network where I work. I had two families there with me to help share the time at the table so we could also spend time with our kids in the zoo. But, we had an unfortunate incident happen...a special needs group was doing a performance and a shoe slipped off a foot and high into the air where it hit a sprinkler and...well, the whole place is under water! Everyone had to evacuate the building. It happened about an hour or an hour and a half into the event. This is really unfortunate because there were some amazing resources there that families never got to see or hear about.

I haven't said anything yet, but Jose has been in and out of the hospital for the past two weeks. He had a very scary health situation where he was having severe muscle spasms and pain in his legs. We got some bloodwork done and it turned out his CPK was at 8047. This is supposed to be between 21 – 292. His ckmb results was 143. This is supposed to be between 0 - 5. His liver was in distress trying to deal with all the byproduct of the muscle damage going on. Over a period of a week, his numbers went back down to normal. We saw a specialist and they think he may have a muscle disease, possibly muscular dystrophy. We are very scared. We will have to begin to see some specialists to help us determine if this was just some freak incident or if this and some other muscular things that are happening with him are something serious and what is it. Today, the zoo was a bit of a test on how he is doing. About a week ago, if he did anything like riding his bike for 3 minutes, the muscle pain would start. He did well today though. He didn't have much muscle pain. That's good.

I am beginning to do a wee-lil bit of packing. I am too afraid to really go for it because it seems like I am so used to having the carpet pulled out from underneath me in my life that I am a bit nervous to jump right in and start packing up the house. I want to be sure that I'm not going to get a call about my loan and hear them say, "Ahhh...sorry but it's not going to work out". The most that I could bring myself to do is to start with something easy. Well, kind of. I decided to pack up my scrapbook stuff. I started by packing up my cricut. That was easy. It fit nicely into the box it came in just a few short months ago. So, tonight I am working on packing up my scrapbook table and supplies. It is easy because it is all in one place (well, in one general area). But it is hard because I really don't want to pack up my scrapbook stuff! I then have to admit and live with that I cannot scrap for several weeks, maybe a month or more. That's hard! But it is a place to start and as I become more secure then we will really start hitting it hard.

Wednesday, May 27, 2009

Whoo Hooo!!!!

Today was an exciting day!!! Jovanna and I got up really early this morning (getting up before 7am should be illegal!) and headed to our State Capitol for a Wraparound Initiative Hearing that is very important to children and families with children who have various special needs. My boss wanted me to testify but my journey raising Jovanna has been so painful for me that it still feels like such an open wound and I know for 100% certainty that all I would have done was cry my way through the testimony. The good news is that I didn't have to! The Ways and Means Committee passed the bill on to the House now. Yeah!

Then I get home and find two issues of the July/August edition of Memory Makers Magazine. I was wondering...why do I have two duplicate issues of this magazine and then all of a sudden it hit me...I have two layouts in this magazine!!!! I was so excited to flip through the magazine in search of my layouts. I gave one to Jose and I took one and we were having fun trying to see who could find them first! These two layouts are really important ones to me because they feature my kids and very special topics. You can find them on pages 67 and 69.

Then, to top off this great realtor calls and tells me that the VA Re-inspection was today and... (she paused to build my suspence) "We are a go!!!!" She said the VA Inspector called immediately and said he was very pleased with the work we did and wanted to let us know right away so we can close as soon as possible. So, as long as there are no more unforeseen road blocks, we will be moving in about two weeks and I will once again be a home owner. This was a very, very good day. Lots of wonderful things happened today...a day to remember!

Saturday, May 16, 2009

Funny Memory...

I was with my son and a few of his friends a couple of nights ago and Scotty recalled a funny story about something Jovanna had done many years ago. I am glad that Scotty and some others remember some of these stories because my memory is just completely gone. Here is how it goes...

We were visiting Jovanna's fathers family in Apple Valley, California. I think Jovanna was around 4 or 5 years old at the time. She wanted her Uncle to play with her and he didn't want to and wasn't paying attention to her. Jokingly, I told her to go and kick him in the chin. She ran up to him and kick him in the place men fear being know what I mean. Her Uncle doubled over in pain and Jovanna ran off into another room. At first, we were all in complete shock - our mouths hanging open and then as her Uncle doubled over in pain, the rest of us began rolling on the floor laughing uncontrollably.

When we finally found her and could control our laughter, I asked her, "Jovanna, why did you kick your Uncle in balls?" She wouldn't answer me and I asked her again. When she finally answered me, she said in her cute little voice, "I didn't know what the chin was". ROTFLOL Hysterically!

We have so many funny stories from Jovanna's childhood. So many that I can't remember them. Looking back, I really wish I had written them down because even though much of her childhood was traumatic for her family, she sure did give us some good laughs too.

Friday, May 15, 2009

So, what's going on?

Well, I am so glad it's friday! Every Friday I text my son and say "tgif!!!" and he responds with the same. It is a ritual for us. That and our Wednesday "Happy Hump Day!" text to each other. Today, I was extra happy that it was Friday. My life has been just hoppin', I feel like I'm on a roller coaster and screaming inside "Let me off!".

We had our VA inspection on the new home two weeks ago and the VA inspector came back with some fixes he wanted made before he would sign off on the appraisal. They were a bunch of little things, actually not the things that we thought he would point out. They were little things but they also were things that required some sweat equity. We cleaned all the carpets in the house, repaired a tear in the kitchen linoleum under the refridgerator area, replaced the linoleum in the laundry room, tore out the front porch that had dry rot, tore out a section of the back deck that had dry rot, repaired a hole in the wall in the laundry room, removed a birds nesting area in an attached shed, cut some wood and adhered to the base of the attached shed door where the birds had created an entry, sprayed the roof for moss, a little bit of paint on the outside to cover some areas that were needing paint after removing the deck and front porch and then...removed all that wood from the porch and back deck off the property. I was sooooo exhausted after several days of all this work. We had to do it if we wanted the home sale to go through. We are already getting a great deal on the house and the bank wouldn't even consider putting anything more into the deal.

So, now we will go over to the house again for a bit this weekend and brush a little bit of dead moss off the roof and a few minor little touches to finish up the work we have done. We have requested a re-inspection and I hope that will happen quickly because our 45 days to close is now getting closer. I am not sure if we are still on target for closing by the end of the month or if the time is has taken to complete the repairs will push that out further or not. I should know after the re-inspection. I hope the VA inspector will respect the work we did and what we put into it and let this sale go through and not keep hitting us with more pidly little stuff.

Sunday, May 10, 2009

Children's Mental Health Day in Oregon!

Friday, May 8th was a very special day. It was Children's Mental Health Day in Oregon! We had children and youth and families and caregivers from all over the state of Oregon at the state capital to rally our legislators to "invest in the mental wellness"! We are asking our state's representatives to support HB 2144 Wraparound Initiative and to fund mental health services - which are facing certain cuts in the face of the economic crisis.

Jovanna and I had so much fun. We danced and sang and played and rallied! Radio Disney was there and they provided a lot of entertainment and Jovanna won the new Arriel's Beginnings movie for guessing the who the Sea Witch was in The Little Mermaid (Ursula). She so enjoyed playing with some of her little friends that were there. She much prefers to play with children who are quite a bit younger, usually around 2 or 3 years old. She loves to take a care-taker role with younger children.

This was such a special day for us. We heard several youth from around the state talk about their journey in the mental health system. Their stories are painful. Yet, they are also hopeful. We also had an opportunity to see what incredible talent so many of these amazing youth have! I was just in awe at some of the incredible presentations of talent! Music, singing, rubic's cube solving in under 15 seconds! It is so inspiring to think about all the adversity these kids have faced in their short lives and how they are also so resilient!

Here is a photo of Jovanna, me and the Oregon Governor's Assistant...

Friday, May 1, 2009

A New Chapter

I brought Jovanna home today. The sub-acute wanted to keep her through the weekend and Monday to observe and I decided I wanted her to come home. She was stable and doing well and she really wanted to come home. This has been a real learning and growing experience as Jovanna's mother. Her dystonic/tardive dyskenisia movements seem to be getting better. This is good news. She may have some lingering eye movements that we hope will get better over time. But the greatest thing that has come out of this experience is that I am rediscovering Jovanna all over again. Once Jovanna was removed off of two medications that were pretty heavy duty medications, all of a sudden we began seeing some very exciting things from her. She was managing frustrations, quite typical and very much alive.

I think we may have been overmedicating her. There was a time a few years ago that she was so unsafe that without the medications, she would not have been able to live at home. But it appears that she has grown and matured and gotten through some of the toughest years for children like Jovanna, on the Autism Spectrum / Aspergers. She has returned to me from a very scary incident on very few medications and a child that I don't quite know, but I like a whole lot. She is polite, she is thoughtful, she is managing frustrations and disappointments. This feels like a whole new world. Could it be a new chapter in our lives? I am excited to see where this goes. What I have noticed about Jovanna on her first day home is other than a few idiosyncracies that are very related to Aspergers, she seems like a very typical child. Might be time to turn the page and start a new chapter in our lives...