An unofficial official diagnosis

We were able to get in to see the Pediatric Neurologist yesterday, a few weeks earlier than our original appt. The Dr. says it is pretty likely Michael does have Neurofibromatosis. He has order an MRI and a blood test to check the DNA. The DNA test should be conclusive because they have identified the two genes where the mutations for NF are located. So, now we are waiting for pre-authorization from insurance and we will get this going. It will most likely be almost two months until we know about the DNA. It takes a month to do the DNA test and it will probably take awhile to get the pre-approval. The forward motion though will begin with therapy. I need to contact our insurance to do PT and ECI.
I was hoping the Dr would be able to tell me what to expect. But, this disorder has a huge range of severity. Some people have a benign problem, just cafe au lait spots and small learning disabilities, while others have severe pain and a small percentage have tumors which lead to death. So, he told me we had to just wait and see what life would bring. The not knowing is hard for me. But, I have high hopes for our little Michael. He is such a sweet boy and we love him so much.

Kindergarten

Today is Andrew's first day of school.  When I woke him up, he said "Is this a practice day?" We had been practicing waking up. He likes to sleep in - he is like his Daddy. :) He was so excited last night, he had a hard time sleeping. And this morning he could barely eat his cereal. Everything was all ready and set out last night. He picked out his outfit and his book to share. I wrote out his name tag and set it on the desk. We were ready. This morning the name tag was no where to be found. Which drove me crazy, I wanted everything to go perfect. Jeremy doesn't start teaching again for a couple weeks so, he stayed home with the boys that were still sleeping and I took Andrew to school. Andrew gave Jeremy the biggest hug goodbye and said," I am so excited. It isn't a practice day. I am going to kindergarten!" We only had one practice day, it must have had a big impact! I couldn't get a great picture, because of where the sun was. Oh, well.  I drove him to school and I took him inside with all his school supplies. He got a new name tag.  :) He put his backpack and dinosaur towel in his cubby with his name on it. Then gave me a hug goodbye. He put his book in the pile and went to sit down on the couch with a different book. He sat down next to one of his classmates - he had down syndrome, maybe that will be Joy someday!- and starting looking at it. I tried to take a picture, but it didn't come out well. He looked nervous when I left him. I didn't expect it to be so hard to leave. I know he will be fine, in fact I think he will do great. He was so excited to come to school and make new friends. But, I cried - not until I was far away from him and he didn't need my brave face anymore. It made me so sad to leave him there looking unsure. I don't know exactly what he'll be doing. I am worried the kids won't be nice to him. I am worried he will fall through the cracks. I am worried the teacher won't like him. I am worried he will be scared in the cafeteria. I am worried he won't learn anything with all the distractions. I am worried he will misbehave. I am worried he will be won't be nice to the other kids. I am worried he won't like his teacher, etc, etc. I know I am silly. I really know that he will be okay. I do.  I am one of THOSE moms. I didn't think I would be. Maybe I'll be ready by the time Jacob goes to kindergarten :)

Monsoon Mondays

This was a post I meant to publish before we left on our cross country trip.  I will post on the trip next. :)

We are in the midst of Monsoon season here in Arizona. Crazy, quick storms that dump a ton of rain down in an amazingly short amount of time. It does bring down the heat a little, but also adds the humidity. It is fun to watch the huge drops of rain, but Andrew hates the thunder.
We had a funny day. Andrew and Jacob found a can of sardines in our emergency kit/food storage and really wanted to open it. I made them wait until Jeremy woke up. SO, we all had sardines at ten in the morning. ugh. But, everyone thought they were okay, even Michael. :) We all had a couple bites. I thought it would be just lots of tiny fish, but it was two small fish sans heads and tails. It was in water, so it pretty much just tasted like fish. I was really expecting the boys to be grossed out, but they weren't. They loved the can and wanted more. Not a bad addition of protein to a 72 hour kit or food storage.
Then in the evening we visited the Tucson Children's Musuem for Monsoon Mondays. It just means everyone can get in for a $1 a person. So we spent $4 (Michael was free) instead of $24. Hooray. They all had fun. They had a dinosaur exhibit, which is the reason we HAD to go. I thought it was great, but not great enough for $24. :)
We are all so excited for our trip. We can not wait.
Michael is drinking out of a straw now, so we are hoping that it will be easier for him in the car. You don't have to hold the cup up as much.
Jacob keeps finding things and saying they are his babies. And if he loses them , he starts to cry. Mostly, they are small things like a bouncy ball or rocks, but he is so cute as he takes care of them. I wish he was as soft with his brother as he is with his 'babies'. :)

Michael Duncan Selim

Our baby is a year old. I can't believe how fast the time has gone. He had a fun party in Phoenix. We got a blow up pool out and the kids had a really fun time. Justina, Taylor, Aiden and Eva had just come into town, so we met Eva for the first time and the boys loved playing with Aiden. The boys love being at Grandma Selim's house and soaking up all the attention. We loved seeing Emily, too. She saved us when the pool we had planned on using had holes in the bottom after we cleaned it all up. :) She is a great Aunt. Our boys are really lucky to have so many people to love them on both sides of our family.

I took Michael to the doctor yesterday and he weighed 22 pounds, 1 ounce. He was 30 and 3/4 inches long. He is our big guy! 

I can't believe June is almost over. It feels like it just started. Yesterday was my love's birthday, he is now 32 years old. He was 24 when we started dating. :) We had to celebrate his birthday on Wednesday, because I spent most of his birthday filming for MDA. We went up to a small lake, complete with fishing license, two fishing poles and worms. We caught nothing. :) Oh, well. It was beautiful up there, much cooler than here and not a cactus in sight. Poor Jeremy just had bad luck - the bobbers ( I don't know how to spell that) kept sinking, the line would get tangled, the reel on one broke and when everything happened to be working, the boys would start throwing rocks in the water, again. I hope we can try again with better luck. Then we came home and had Jeremy's chosen dinner - pizza and hot wings :) I hope he had a good birthday. Last year, he says he spent his birthday alone in a hotel room with a can of spam. So hopefully, this was better. But, how can you really compete with Spam? He was teaching a workshop in Austin and we were in Houston praying that Michael wouldn't come while he was away.
The next day, Jeremy and I both went to work. Thankfully, Lynne came up to celebrate with us and to watch the boys while I filmed. Everyone was really nice and even though they misspelled my name on my VIP name tag - Cindy Selin- I still felt important. It was filmed at the national headquarters of the Muscular Dystrophy Association, so no one can go in without being signed in, given a name tag and escorted by an employee to wherever you need to go. I have no idea why.
But, anyway I learned how easy it is to work with a teleprompter. I always thought that it was right next to the camera and that you had to balance looking at the words and the camera, but it is the camera. The words are right on the lens of the camera. Pretty cool. I will probably never have a need to know that again, you typically don't look straight into the lens. :) This time I only looked straight into the camera for one shot anyway. I had a great time. I felt like a professional. It was a nice feeling. I didn't have to calm any children, change any diapers, etc for six hours and I got paid to pretend I was talking to someone on the phone. :) It was great. If I hadn't almost walked into the men's room, it would have been virtually painless.
One hard thing is it gave me a taste for it all again. I would really love to do more. I hope that other things will come along when I really need a break. Or a new pair of jeans. :) Andrew can go through a pair of pants faster than anyone I know. Only his church pants are without holes in the knees. And not the fashionably ripped jeans, just ones that obviously happened when he fell down. They match all the bruises and scrapes all over his legs. He plays hard! I am not excited for school clothes shopping.
My baby turns one next week. I can not accept that!

Father's Day

We had a great Father's Day this year. At least, we enjoyed it! I hope Jeremy did. :) Andrew was the event planner this year. He decided we needed to do a Father's Day parade complete with marching band. Andrew played his guitar, Jacob played the recorder and Michael and I were on the drum. We walked in singing, It's a parade, It's a parade, It's a Father's Day parade over and over all while playing our instruments. Jacob was really funny to listen to, as he was trying to blow into the recorder and sing the song. We all had the song stuck in our head all day.  Then we presented Jeremy with two fishing rods, one for him and one for the boys. Then we gave him a pair of shoes that matched the boys shoes. They picked all of it out. And total it was $20. Not bad discount shopping!  He woke up with a smile, which was sweet.  Anyone who knows Jeremy knows he hates to wake up, he loves to sleep in if he can. And then we had pancakes, eggs and bacon, which the boys helped make.  Then we all got ready for church and went to church.  It was so fun to have the boys so involved and that Jeremy really liked everything. He is really hard to shop for. 

I am so glad that Jeremy is the father of my children. He loves then so much and they really love him. Whenever Michael sees him, he gets the biggest smile on his face. He has started to just let go of me  and try to jump to Jeremy when we are standing by him.  We love you, Jeremy. I am glad that there is a day to honor them. I got to talk to my Daddy and he really likes the fishing pole we all got him. I wish I could have been there to celebrate with him, too. Last year we were there. It is hard to be so far away. Love you so, Daddy.

I would include pictures, but our memory card is acting up and the camera won't read it anymore. Oh, well. 

We have had a great week. Last Wednesday, the boys and I went to a playgroup tour of a fire station. Of course, I forgot my camera.  But, we had a great time. They saw the the bedrooms and the four refrigerators and the fire truck! They climbed in, 'drove' the truck and watched how high the ladder went up. On Saturday, we went hiking at the top of Mt. Lemmon with Celia, another Acting Fellow at the UA.  It was really beautiful. We had a picnic and the 'trail' led you across the creek several times. We saw a small waterfall and threw plenty of rocks in the creek. 

On Monday, I had my first audition here in Tucson. It was for a video teaching the volunteers for the MDA telethon what to do. The MDA headquarters is here in Tucson. It was nice to be auditioning again. I saw the other women there that were auditioning and thought, 'oh, well. At least it will be good for me to get my feet wet again.' They were beautiful and totally different than me. I stumbled a few times in the cold read, but overall I felt fine about it. When I left, I didn't think it was mine. But.... yesterday my agent called and told me I got it! I am really excited. I am thrilled to  take a little time away and film something. The money will be nice, but it feels good to be doing something different and using my talents.  Too bad it is on Jeremy's birthday. 

His show opens in two weeks and he will be performing on his birthday, too. 

And - Taylor and Justina has their baby! Yesterday, their little girl, Eva Elle Selim was born. I think she was about six and a half pounds and they are doing well. I will post a picture when I get one. Taylor sounded so happy when I talked to him. Congratulations! When I was talking to Taylor, I told Andrew his cousin was born and he asked," Is she big enough to play with us?"

Now he is going to start asking me for a baby sister again!