Friday, May 28, 2010
Thursday, May 27, 2010
Jon Felipe and Maria running through the sprinkler in our backyard this weekend when it was ninety degrees out.
Thursday, May 20, 2010
The CT scan did not show any evidence that the thymus had grown back. The nurse was very pleased to share that and couldn't understand why I didn't think that was just great news. I was hoping this would be the easy solution to the problem, but I guess not.
The blood work did confirm that she has MG. This would seem obvious, but we have never had this confirmed even though we have been treating her for MG for years. There are two different blood tests that can be done for this. My understanding is that one is quick and dirty and isn't terribly accurate, but it is cheap. This is the one our previous insurance company would pay for. When we did this one in Michigan, it came back negative. The other is more expensive and involves sending blood samples to Mayo Clinic. This it the one we had done this time and it showed very elevated levels of whatever they were looking for.
Something from this round of testing also suggested to Dr. B. that Maria needs to see Dr. Z. This is the same doctor she sent us to with Jon Felipe when he was having lots of seizures back in December. We liked him a lot. We hadn't been told that yet, but we now have an appointment to see him on June 3. So, we'll see what that is all about.
In the meantime, she is doing okay but occasionally gets frustrated with how weak she is. The last two nights we sat in the balcony of the auditorium for the kid's concerts and it was exceedingly difficult each time to get Maria up those stairs. She is just too weak to be able to climb steps like that any more and she is too heavy for us to carry.
As for my surgery, still no news. I do know that the insurance company asked for more information from the doctor.
Wednesday, May 19, 2010
We have been attending lots of musical events lately. Last week Maria had a choir concert. Unfortunately, we forgot to get pictures, but it was a nice concert and she sang beautifully. Last night was Luke's concert. Above is a picture of the orchestra and Luke playing his violin. It was a good concert and Luke played well.
The second set of pictures is from the SCCS musical for grades kindergarten through 4th. Each grade has a different color t-shirt. The school theme this year is The Fruit of the Spirit, so the shirts have "got fruit?" on the front and list the fruits of the spirit on the back.
Jon Felipe has really enjoyed preparing for this musical. He has been walking around singing the songs for weeks. His favorite is "Sanding on the Promises of God" (he can't say his "st" blends so it sounds like sanding instead of standing which just cracks us up every time). He knew all the words and the motions and did great.
One more concert next week and then we're done for the season, I think. Summer is coming!
Tuesday, May 18, 2010
He bought me a new pack of white athletic socks. I love new socks. Eventually they wear thin, but those first few times you wear them, they are so soft and cushy. A friend told me once that if he ever got rich, his one indulgence would be to wear new white cotton socks every day. Sounds good to me.
Lately, though, there has been a lot more happy and sometime the sad isn't there at all. Plus, my new socks are still soft and cushy. It's all good.
Saturday, May 15, 2010
So, we were interested to attend Orange City's Tulip Time activities this year. The event isn't quite on the same scale as Holland's, but it was still fun. I have to admit that part of the fun was the fact that all my children agreed to go along and everyone had a good time.
When we walked up to the parade route ten minutes before parade time and were able to get spots along the curb for all eight of us (Jacob's friend Tony was with us too), I wondered if maybe we had the route wrong. However, we had a great spot to see the parade and I must admit, there is a lot to recommend about a parade that lasts less than an hour. Part of the joy was watching it with Jon Felipe. He was so excited about everything and kept pointing out each new and exciting thing - a cow, horses, a troupe of unicyclists, and many more.
After the parade, some of us got a dose of junk food and some of us enjoyed the tulips in the park. Then we watched a team competition. This is an event that Holland lacks, but should perhaps consider for the future. Each team has about a dozen members and they each have to complete a number of wacky challenges faster than the other teams to win. It was very entertaining. There was a carnival too, but we managed to avoid that. Jon Felipe had reached sensory overload, so we deemed it a good time to go home.
Early this morning, Dwight and I headed back to Orange City before any of the kids were even out of bed. I ran my first 5k and Dwight cheered me on. I had decided a few months back that I was going to start running again and prepare for the Tulip Time 5k. My goal was just to finish, which I did. I do want to say that I'm pretty sure at least 2/3 of that course is uphill. Still, it's the fastest time I ever got on a 5k :-) Anyway, now I'm hooked. I think I may sign up for the Run for a Cure 5k here in Sioux Center during Summer Celebration.
So now I am already looking forward to next year's Tulip Time festival. Next year, I am going to make sure I get to the quilt show. I also want to take one of the horse drawn trolley rides. I hope we can ride on the trolley driven by Maria and Jon Felipe's bus driver. I also want to hear my friend Ed sing with his group of bicycle singers. I might even try to go see the car and truck show and the antique tractors, especially if I can get my dad to go with me.
Thursday, May 13, 2010
Miss Maria has huge hospital related anxiety (not from anything anyone here has done, this is from experiences prior to her adoption). On a scale of 1 to 10, she is an 11 in this area. Her general hospital anxiety is only outweighed by her anxiety about people accessing her port. This one is off the charts high. Well, as soon as we got to the room, the nurse came in to talk about needing access for the dye for the scan. Now using her port would make the most sense, but Maria absolutely flipped out about that idea.
A child life specialist soon joined us. I'm not sure if she just goes to every patient when they come in or if they sent her to us specially because Maria was so upset. We did put numbing cream on several spots on her arms as well as her port. I was going to call Nurse Lisa so she could tell Maria that it would be okay for someone else to access her port (in Maria's opinion, Nurse Lisa is the authority over all things medical and particularly over her port) only to discover that I don't have her number in my cell phone.
Fortunately, the nurse was able to get access in her arm, so we didn't need to access the port after all. The scan also went smoothly. As soon as we were leaving the hospital, Maria was back to her happy self. We stopped at McDonald's for lunch. I find that a big intake of fat and salt helps with recovery from anxious situations. We should hear the results of the scan in the next few days.
Wednesday, May 12, 2010
It would not be totally unusual for this to happen, especially as she was very young when she had the surgery. I don't think we will find out the results right away. If the thymus has grown back, it is an easy surgery to have it removed again, so this would be a simple fix for the increased weakness she has been having.
Classes are finished for the semester and I am already working on picking textbooks for my fall classes. The sheer number of choices is overwhelming. Instead of having the companies send me so many books, I have been trying to view them all online. The entire book is available to peruse online and I am in favor of the good stewardship involved in viewing the books this way, but I have to admit that I still would prefer to look at the real thing. Probably a sign of my age.
I am also working on preparing for a graduate course I'll be teaching this summer as well as a workshop I'm giving. I am doing the workshop with my friend Gwen and I have really enjoyed working on the preparations with her. I think we are going to have a good time doing this together. Hopefully, the participants will also have a good experience.
Please pray that we have resolution on our house soon. This would bring us great peace of mind.
Monday, May 10, 2010
Nancy invited Maria and me to go to a salad dinner that the women's ministry at her church was putting on tonight. The evening had a bridal theme and they really tried to make it a special evening. We had cloth tablecloths and cloth napkins, very cute favors, and the tables were decorated with flowers and wedding photos.
After dinner, the teens put on a bridal fashion show. The church sanctuary was decorated as though for a wedding, they even had someone playing a harp, and the young ladies modeled bridal gowns which had been lent for the occasion by various church ladies. There were several gowns representing each of the decades, starting with 1940 on up to the present. I particularly enjoyed seeing the gowns from the 40's and 50's. We also got to hear anecdotes from each of the weddings.
One of the ladies then gave an excellent talk on Jewish wedding tradition and related it to the Biblical verses referring to the Bride of Christ. It was a beautiful talk and emphasized the importance of being ready for Christ's return. I am so glad we were able to attend.
Wednesday, May 5, 2010
The second graders at SCCS are doing a talent show. Each child has to prepare something to share with the class. Jon Felipe wanted to opt out, but we convinced him that his classmates would like to hear him sing in Spanish. This is a video of him practicing. He loves to see himself on video. I promised to video him tomorrow when he sings it for the class. I'm thinking it's not likely that he will actually do it, but maybe he will surprise me. He did tell me that he is too shy to sing in front of his classmates.