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Madi’s appointment at the Shriner’s Hospital was today. Here’s the note I posted on Facebook about today:
Today we took Madi to the Shriner’s Hospital in Greenville, SC. She was a little nervous because it is a hospital, not just a doctor’s office. Very quickly, she was put at ease. The place is awesome…huge statues of animals are in the two story lobby with a big fountain that spills over large rocks. She was able to pick out a beanie baby to keep when we registered and they have DVDs, video games and all kinds of stuff for kids everywhere you look. The doctors and nurses were all extremely nice…very different from most other offices…it seemed as if they really wanted to be there, not just there for a paycheck. The doctor wants to identify what specific type of muscular dystrophy Madi has. There is no cure for any of them, but he wants to know due to the complications that specific types bring later in life. So, we have an appointment with the genetics team in February…it takes about 9 months to get those appointments. There will be lots of tests, some that require a muscle biopsy, which is why we never have had them done before. She will have to be put under anesthesia for that. But, if it helps… Also, he wants her to wear those horrible braces she had in Kindergarten again. I’m hopeful that now that she is older, she will have more control and balance. They caused her to fall more when she had them before. He at least explained the point of them to me, which was never done before. She walks on her toes to compensate for weak quad muscles and that puts a huge strain on her knees. These AFO’s, or inserts, will force her to put weight on her heels. Under jeans, you’d never see them, but with shorts, well, that’s why she hated them before. They did let her pick out a design and colored straps so she liked that. We also went to a motion anaylsis lab where they used special video cameras to film her as she walked. The computer will do a report for the doctors to show them where she is putting stress, etc. It was really cool. The physical therapy team also did a muscle test and rated her strength. They will repeat the test each time we come to make sure she is not getting weaker. The therapist told us some good, everyday things that will help…and they are the very things we had considered selling our house to help her avoid…stairs! It was a great day and we have another appointment in six months. I am so thankful for the Shriners (and Brad Carmichael for hooking us up!). This particular hospital is in danger of being closed in July. Please pray that it doesn’t! If it is closed, the closest one to us will be in Kentucky. It is a wonderful place and helps countless children have much better lives! I know for a fact that the inserts that they are making for Madi cost us $1000 four years ago. I wouldn’t even begin to know how much the motion analysis and doctor visits would have been. We are so blessed to have been given the opportunity to help Madi have an easier life. After the five hour appointment, we took her to eat at Zaxby’s and to the Heywood Mall and let her shop in Claire’s and she made a new bunny at Build-A-Bear. Even though it was an “All About Me” Day, she allowed her daddy to help pick out one thing: visiting the Marble Slab. We don’t have one around our house and Thayer can’t resist when we see one. Thanks for your prayers for today! We’ll be driving back home tomorrow.
Here are a few pictures of “All About Me” Day. You are not allowed to take pictures in the hospital…I wish I could because it was awesome!
Julia was inducted into the Norwayne Middle School chapter of the National Junior Beta Club. There were 33 kids in 6th grade (out of about 350!) but she was the only one from her homeroom and only one of three from her team. We are super proud of her! You have to maintain an A in every class to stay in. She had on some pretty tall heels so she was the second tallest of the whole group! They had snacks on each table from Mickey’s Pastry Shop. Yummy!! Here’s a few pictures:
In other news, Bailey’s cake did not win anything…she was totally robbed!! Seriously. Not just because I’m her mom, but because the three that won were no where close to being as good as hers.
The girls’ elementary school sponsors a cake decorating contest for 4th and 5th graders every year at their Spring Fling. Julia entered both years…she won 3rd place the first time with a caterpillar cake. Last year, she won 1st place with a sand castle cake. So, now its Bailey’s turn. It is getting harder and harder to find creative, original ideas that they can actually make themselves. Believe me, it is obvious when parents have helped too much! Fortunately, I think the judges can tell, too. We found several choices, but this is what she finally decided on:
She was able to do almost everything by herself. She was quite proud…I hope she either wins something (1st place wins $15—quite nice for a 4th grader!) OR that she is not a sore loser. As usual, Julia has set the bar high…but typically Bailey has risen to the occasion. Here she is:
BTW – a big thanks to my friend, Sue, for letting me borrow her camera while mine is being repaired…I need it tomorrow night and I promise I’ll bring it back, Sue!!
The girls had their premiere tonight for Robin Hood…it was the one and only showing! Usually there is a school play and three weekend proformances. This play though is a Missoula Children’s Theatre play and only has a school show and one evening show. Unfortunately, there was not enough interest to have a school play. Between our girls, there are 5 field trips, Field Day, a Spring Fling and a few other activities over last week and this coming week. I guess all schools are just too busy. Anyway, they practiced each day from 4-8:30 and had the play tonight. It was so good! Its hard to believe they are able to learn that much in one week. Julia was a guard, in charge of trying to arrest Robin Hood. Bailey was an aristocrat (the Countess of Crisco), and had gold taken from her by Robin Hood. Madi was a forester, and helped hide Robin Hood in Sherwood Forest. They all did a fantastic job and I think we finally found Madi’s niche…anyone that knows her well knows she can really make some dramatic faces. Avery did well tonight. She didn’t understand all the funny parts and kept asking, “what did they say?” whenever people laughed. We were sitting on the front row and it was cool to see each one of the girls’ faces when they came out and realized that we were that close! The November play is “Miracle on 34th Street” and they are all wanting to try out. The spring musical will be Grease. Madi will not be old enough this year for the musical. Here are a few pictures:
I helped Vernon out tonight in the Student Praise Band. He asked me at lunch time if I would be able to play the keyboard. Keep in mind that I took piano for 10 years so that shouldn’t have been so hard. But, the music that Vernon uses doesn’t have notes on it like the music I know how to play. It has one letter over the words of the song where you should play that chord. My piano career included 5 piano teachers but not one made me really learn chords. So, after coaching me a few minutes, Vernon was able to get me to play what he needed, so I agreed. It was a pretty cool experience, but not one I think I want to make too much of a habit…singing is way more my thing now. I love playing the piano when I have all the notes in front of me but holding out chords for a whole measure or two is not as fun.
What do all three have in common? They have all been part of my diet downfall this past week! I bought 5 Cadbury eggs the Monday after Easter. I had already had that many before Easter. I convinced myself that I could keep them in my cabinet and have them as a special treat over several weeks. But, I am so addicted to them, that I finally just went ahead and polished them off by Thursday so they couldn’t torture me any longer. Then, my mom brought me 6 more when she came on Saturday. I think I have 3 left. Saturday night, the girls and I made cupcakes to share with my parents and nephew. We also went to a birthday party Sunday afternoon where they sent home a cupcake with us. Then, the person who brought dessert for our Life Group Sunday night brought…yes, cupcakes. So, let’s see…I believe i’ve had six cupcakes since Saturday evening. There are a few more in the kitchen, but I will not give in! Finally, a guy at our church brought homemade doughnuts to church today. They are kinda small like the mini-ones at Krispy Kreme. I’ve eaten 5 today. Thank the Lord, they are gone and can not tempt me anymore. I had finally lost the 7 pounds I gained at Christmas right before all this happened. Hopefully, I can climb out of the sugar hole I’m in tomorrow and I can start working on those 7 pounds again. The girls can finish the cupcakes and I’ll have Thayer hide the Cadbury eggs and get them out only as a reward. I am so miserable right now because I know what the scales will say tomorrow…
In other news, all three big girls auditioned for Robin Hood today and all three got a part! Madi is a forester, Bailey is an aristocrat, and Julia is a guard. Julia’s group will have their own song and dance. It is a Missoula Theatre production. That is a traveling theatre company that comes in to town and helps kids do a production in one week. So, practice each day after school until 8:30 and a dress rehearsal and performance on Saturday. Anyone who wants to see it, come to Fremont School Saturday at 7:30. Madi wasn’t sure until when we left for the audition if she was going to try out. She has wanted to but was still a little nervous. She is so dramatic that I knew she’d do great! I still think the biggest drama queen in our family is yet to come of age for Stage Struck plays. Some of the faces Avery makes are so hilarious!
My mom and dad are visiting with us this weekend and they brought my nephew with them. We have enjoyed having them here and I love hearing giggles all over the house. The weather has been so nice today that we were able to do a lot outside. I also enjoyed one of my favorite spring/summer activities: cooking out. I hear a lot of people call it “barbequing” now, but if you don’t put barbeque sauce on anything and you are only having hamburgers and hotdogs, is it still a barbeque?
Here are a few pictures my mom took. My camera is on its way to somewhere in NJ to be repaired. I’m sure my brother and sister-in-law will kill us, but being with four girls will wear off on little boys after a while. Matthan was very interested in Avery strolling her dolls today, and the last picture shows what happened…at least I did go find a boy babydoll! (And yes, those shows on the trampoline were Avery’s water shoes that happen to be pink…I didn’t want to get dog poo on his shoes and that’s a major possibility in our back yard!)
I really hate that my Spring Break is nearly over, but I’m lovin’ that we got so much work done this week! It is so wonderful to be back in a clean, organized house. Now don’t think I got all crazy and did honest-to-goodness spring cleaning or something. The windows could use cleaning as could the curtains, baseboards, etc. But, the attic and garage are straight, closets look good (except Madi and Bailey’s closets, but I don’t hold out hope that those will ever stay straight!), laundry is caught up, summer clothes are in the girls’ drawers, the floors are clean, furniture is dust-free, we are actually sleeping in clean sheets, and all the boxes of Thayer’s books and office stuff is out of here! The bathrooms still need to be cleaned really well and the yard is crying out for help! (Our wonderful neighbors cut our grass two Saturdays ago but its time to do it again.) I plan to tackle both of those tomorrow. I love flowers, although I can’t put out much in the back yard because of the dogs. I bought my flowers tonight and will put them out tomorrow. Now, if only our van hadn’t died this week, I’d say it was a totally perfect week! (We’re still trying to decide what to do with the van…a head gasket blew and to replace it costs $800. I looked up the van’s value today and it is only $1000. We were already planning on trading it this summer. Any ideas???)
Julia, Bailey and I had dentist appointments this morning. We actually had to set the clock to be up and get Thayer to church (we are a one car house this week while we wait to hear the status of our poor van) before being there at 9 am. I don’t know what I was thinking when I made the appointment that early on Spring Break. Anyway, we all had good reports, but my back teeth have still been sore today.
We actually finished our taxes a day early this year! We never file before April 15 because we are considered self-employed and have to pay quarterly. We dread this day every year, but today wasn’t so bad. It took us about 5 hours…with a 2 hour break in the middle to grab some Chick-Fil-A. I bought Thayer a strawberry milkshake and myself a piece of blueberry cheesecake to celebrate.
We are planning to finish up our house cleansing tomorrow…I have to get all the winter clothes out of the closets and drawers, replace them with summer ones and then get the winter clothes up in the attic. This involves a trip to the consignment shop and Goodwill to get rid of the clothes Avery has outgrown. There are some outfits that I can’t hardly bare to part with after seeing all four of them wear them. Then, there are others that I just toss in the trash because they aren’t even worthy of taking to Goodwill! We also have to clean bathrooms tomorrow and get the garage cleaned out. Finally, there are 5 boxes of stuff Thayer has to take to church and get up in the attic there…my attic can’t hold any more of this church stuff…especially since I cleaned it out yesterday.
Avery and I had “school” tonight since she is missing it so much this week. She loves telling me the letters and is really interested in seeing us spell out her entire name with the magnetic letters. She has eaten about 3 chocolate bunnies already since Sunday…she’s a girl right after my own heart. She watched High School Musical 3 two times last night and asked to see it again today. I hate that my camera is broken (we did find the 2 year warranty today and I’ll be checking on that tomorrow!) because she was trying to dance along with them and actually did a great job. I think we may have a “hip hop” dancer in our family. Bailey is the ballerina and Madi enjoys tap. Julia doesn’t take dance any more, but really enjoyed learning “real” dances at the Cotillion this year…particularly the tango.
Bailey and Madi cleaned their room. It took 2 days. Every time I would “inspect” and show them more stuff to do, they’d sigh. I reminded them over and over that if they would keep it neat, it wouldn’t be such a chore to clean it up. Thayer helped them for a little while last night and couldn’t believe how they could have so much stuff put in so many places where it didn’t belong.
Julia has become a Twlight fan…she’s read all 4 books and watched the movie. She has also been crocheting this week. She made a scarf in one day.
We’re trying to think of something fun to do with them on Friday as a reward for all the time we spent at church the last 6 weeks. If the weather is good, the beach would be fun. Maybe a movie. Its hard to find something they all 4 enjoy now.
Our Spring Break is going by too fast already, but Avery and I only have 5 weeks of school left once we go back. I think I can make it!
We’ve had another busy week and I was so ready to slow down and be able to worship our Savior King today! It was a wonderful day of celebrating and we rocked it our for Jesus! Thayer broke 15 plates today to show how we made a mess of our lives (the plates) and we spend our time trying to put them back together. We can never put that mess back together and Jesus has to make us a new creation. It was lots of work cleaning up all that glass between services, but the point was really made clear for people. It was our first “normal” day in our new building since we only had open house and one service last week. There are still some bugs we need to work out and there are still a few hidden spaces that still need to be cleaned out.
I took another nap today…two in a row! I’m so glad that this week is Spring Break so we can finally get our house in order. The downstairs got cleaned up today and the upstairs isn’t that bad. The worst thing we have to do is clean up and organize the attic. You can’t even walk around up there and I have to get the summer clothes out of there this week and put away the winter clothes. If I don’t do it this week, it will be too hot.
On a sad note, our van died today. We have been so busy over the last 5 weeks that we haven’t paid close enough attention to it. We discovered it was dangerously close to being out of oil last night. Thayer filled it up and I drove to town to get a few things for today. Then, on the way to church this morning, it started to “bounce” a little and I noticed it wasn’t responding exactly right when I pressed the gas. The oil light came on and not long after, the “Check Engine Soon” light came on. I decided to stop at the Hardee’s just down the rode from church so I wouldn’t get stuck on the road. I didn’t quite make it into the parking lot before the van turned off, and we lost powering steering. Amazingly, I got it into a parking space and called Thayer to come get us. It won’t even turn over, so we asked the Hardee’s manager if we could leave it parked there overnight. We didn’t want to call a tow truck on Easter. We’ll find out tomorrow, but it is an 11 year old van and not worth even $1000. We were planning on trading it in this summer so we don’t want to put any money into fixing it. It has been a good friend…but it looks like it is time to move on!
I hope you enjoyed your Easter and are living in His ressurrection everyday…not just on Easter! We are new “plates!”
We didn’t get to take a lot of pictures because our camera also has died. (Our very nice one we just bought last July…we are going to check on having it fixed…I hope we bought the warrenty!) Here are a few we took on Thayer’s camera phone.
