Friday, April 30, 2010

Surgery?

I mentioned before the possibility of a surgical implant to help restore hearing on my right side. I did have additional hearing evaluations done awhile back and it has been determined that I am an excellent candidate for this surgery. We are still waiting to hear if the insurance will approve this and how much of the cost they will cover. Right now, though, I am leaning toward having this done, depending on the answer from the insurance company.

Apparently it is pretty delicate surgery. Once the implant is placed, the healing time is generally three months before I can use the receiver, although sometimes it is much less (closer to six weeks). That means if I get it done soon, I will be able to start using the receiver in time for the next school year.

They will have to shave my head in the area where they will be operating. The surgeon was very apologetic about this and I kept reassuring him that it really wasn't all that important to me. After all, hair grows. Good thing I've gone to shorter and shorter hair styles lately!

So, stay tuned for the final decision. There is a group online for people with this kind of implant and they are very enthusiastic about what this implant has done to help restore their hearing. It does sound, though, like the recovery from the surgery does take some time and I should plan for some down time for at least the week after the surgery. Down time isn't usually on my agenda so I will need to plan ahead for that :-)

Tuesday, April 27, 2010

Peds Neurology


I took Maria and Jon Felipe back to the neurologist in Sioux Falls yesterday. It made for an early morning as we needed to leave here at 6:30 a.m. to make it to our appointment on time. Thankfully, Colin came with me to help. That way I could focus on what the doctor was telling me about each child while Colin hung out with the other one in the waiting area.

JF is still having several seizures a month so we are going to try increasing his medication again. We will have to have blood work done in a couple weeks to monitor the levels in his system since we are on the high end of dosing for this drug. (It will take a couple weeks to increase to the target dosage.) If this doesn't work, we will have to consider other medications, something I don't really want to do for many reasons.

Maria is more complicated, as usual. We have seen a real decline in her strength. We were told to expect this with the onset of puberty, but the doctor is still concerned. We are going to have an MRI done to check if her thymus has grown back any. She had her thymectomy done when she was quite young so this is a possibility. We have had other specialists also suggest that this should be done. Actually, this would be a easier fix than some of the other things that could be happening.

She also needs to have more blood work. This time the blood samples will be sent to Mayo Clinic for the work up. The doctor is looking for specific information on the type and levels of the problem antibodies so she can explore some other possibilities for targeting these specifically. There is also a possibility that because of the ongoing nature of Maria's struggles (most people with MG have periods of remission, but that hasn't happened for Maria so her system has been under constant attack for many years), she has developed myopathy. Honestly, I'm not really sure what that means exactly. I think it means there has been some long term damage.

Finally, Maria is going to go the neuromuscular clinic this summer. Our neurologist will be there as will several other specialists in neuromuscular diseases. We are all hoping that with many heads working on the problem, we will come up with some solutions to stop the backwards slide that she is in.

On a side note, she has filled out and when I took her shopping for clothes, things actually fit which was nice for her. Unfortunately, her muscles aren't really strong enough to support this extra weight, so we have to help her keep from gaining more weight until she grows taller. Those of you who know Maria know what a worrier she is and now she has one more thing to obsess about. Worrying about weight gain shouldn't happen at age 12.

Saturday, April 24, 2010

Prom Pictures

Here are some pictures from last night's prom. In the first two, you can see George and Regina's middle daughters, Kaleigh and Emily, participating in the "Grand March." Sorry they are a bit dark.

Kaleigh and her escort

Emily and her escort

Kaleigh and Emily


Maria with Kaleigh and Emily




Update on Colin


After working for a few weeks for the census, Colin is now working in the meat department at HyVee, one of the local grocery stores. Here he is in his "uniform" for work. He likes his job and the people he is working with. He is planning to return to college in the fall, probably to study graphic arts.

Friday, April 23, 2010

Prom

The students at HCHS would all gather at one place to have pictures taken before heading off to prom, usually the park downtown unless it was raining. Every year, Maria and I would go over to see all the beautiful girls in their princess dress. Such fun! We both love princess dresses. Today was the day for HC's prom. Obviously we couldn't make it to the park to see all the girls from HC, but it is also prom night tonight for Sioux Center. So, when Regina called to see if Maria and I wanted to see the girls, of course we said yes. Maybe some traditions are universal.

Here in Sioux Center, though, this tradition is a big deal. After the dinner ends and before the dance begins, there is this big event where all the students at the prom get introduced. They have a stage set up and after the students are introduced, they walk down a runway and pause at the end for pictures. An MC provides light commentary (HC friends - think a slightly toned down Dave S.) It is like a giant fashion show. The students are introduced as pairs, mainly couples, but also some groups of friends. They are all so poised as they walk down the runaway, some even dance down it. Most are clearly enjoying themselves.

Now here is the interesting thing, this is like a community event. It is held in the gym and community members (parents, friends, etc.) sit in the bleachers to watch. Pictures are encouraged. Everyone applauds for every student. The bleachers were absolutely packed. George went an hour early to save us seats. And here is the amazing part, every person there paid $2 for the privilege of seeing these students in their finery. Maria and I loved it. George and Regina have two daughters at this year's prom, they both looked absolutely beautiful. I wish I had pictures.

Thursday, April 22, 2010

Arches


This is Jon Felipe (right) with his small group for science. His group had to learn about arches and then teach the rest of the class about the topic. I love this picture because he looks so happy.






As you can see, their experiment involved breaking a few eggs. JF was very enthusiastic when he was explaining it to me. I gather the group had a great time working on this together and teaching the class.

Sunday, April 18, 2010

The Good and the Yucky

Started feeling yucky on Friday afternoon and it carried into the weekend. The good part was that my family completely spoiled me. I got to take naps, drink pots of tea, and read books that had nothing to do with work. Dwight cooked meals he thought I would enjoy. Colin and Jon Felipe baked me cookies. It was lovely to just rest and let them spoil me. I even watched some T.V. with the family, something I never do, and I enjoyed that too. I was reminded a bit of that African story where, after working hard for several days, the men take a day off to rest and "let their souls catch up with their bodies." I feel like I've taken some time off to let my soul catch up with my body and now I'm ready to jump back into my life again.

Friday, April 16, 2010

Worship and Calling

I recently heard a sermon on worship and how our calling is part of our worship. We are all created to glorify God, but we have also each been given specific gifts and when we use those to live out our purpose here on earth, we are also worshiping God. This means we have opportunity after opportunity every day to worship God through the use of the gifts we've been given.

When you do what you are created to do with the gifts God has given you and do it to the best of your ability, it is worship. Calling is therefore much more than just the job for which we get paid. It is how we live out out our lives. This got me thinking. If I expand calling to mean more than vocation, what might my calling be.

I think I have a calling as a parent. I believe this despite the fact that I cannot say that I have always enjoyed taking care of children. I was not the teen who loved babysitting. I made money during my high school years by working in a beauty shop. I still think I have a calling to be a parent (and definitely do not have a calling in the area of cosmetology). We have three biological children, we have invited teens into our home and acted as their foster parents, and we have been privileged to be able to adopt two special children. I love being a mom and I'm glad God has trusted me with so many of his children. I do take note, though, that in his infinite wisdom, God brought our foster and adopted children to us as older children and not babies.

I also think I have a calling as a teacher. I get a lot of joy from teaching. I have enjoyed teaching in many settings. I have taught high school science, I have taught special education, I have taught English as a second language, I have co-taught math, I have been involved with Head Start, and I have taught college. While calling is not necessary what you get paid to do, I have been fortunate to be paid to do something that I think is my calling and that I love.

Finally, I think I am called to be an advocate for children with special needs. I think I was able to do this in the system where I worked for over twenty years. I was one of many doing the advocating and we were able to develop very good programming to meet the needs of a wide range of students. I think that school still has a great special education program. I also think I am doing this every time I teach a class of students about working with children with special needs. I hope I have more opportunities to do this in the local schools here.

What is your calling? I'd love to read about it.
Do we outgrow or complete one calling and does God give us another one? I think so, do you?

Sunday, April 11, 2010

ASD and Girls

As I mentioned, April is Autism Awareness Month and I wanted to review a number of books that I have read recently on this topic during this month. Today I want to review two books on the topic of girls with Autism Spectrum Disorders (ASD) including girls with Asperger's Syndrome (AS). During my many years teaching special education, I have worked with quite a few students on the autism spectrum, but only a handful of them have been girls.

The ratio of boys to girls on the spectrum is 4 to 1 and when we look specifically at Asperger's Syndrome, that ratio is 10:1. There is a debate as to whether this is a correct ratio or whether girls with AS, similar to girls with ADHD, are under diagnosed. Perhaps the criteria are too specific to the typical characteristics of males with ASD and therefore do not fit the characteristics of our girls on the spectrum. As I thought back over the many students I have worked with, I could identify a couple girls who had been labeled with emotional impairments that perhaps could have more accurately fit the category of AS.

For those who want to gain more information on this topic, I would highly recommend both books that I am going to review today. I found both to be very easy reads, something you don't always find when dealing with a topic of this nature. A habit I have as I read is to put sticky notes in places of interest and both of these books are bristling with stickies. Both books are also award winners. I am glad to have them both on my bookshelf to refer back to. If you are looking for books on this topic, either of these would be a good place to start.

Asperger's and Girls is a compilation of essays by a variety of well known writers in this field, including Tony Attwood and Temple Grandin. If you want to get started with the basics, this is the book I recommend you begin with. Every parent should be given this book when their daughter receives a diagnosis of AS. It outlines the characteristics of girls with AS and prepares parents for issues they may face as they raise their daughters. It covers topics related to education, friendship, bullying, puberty, transition, dating and marriage.

Girls Under the Umbrella of Autism Spectrum Disorders is by Lori Ernsperger and Danielle Wendel. This book received an award from the Autism Society of America in 2008. This is another great book on this topic. It is laid out chronologically, moving through diagnosis, early years, school age, adolescence, and adulthood. It also includes short essays on these topics by both parents and their daughters. This book is very informative with a lot of good ideas for handling those issues that typically arise during different stages in the life of a girl on the spectrum.

I recently picked up another book on this topic that I will review as soon as I get time to read it. I am very interested in learning more about how best to help our girls who are on the spectrum. At this point, I would like to do some case studies of my own of girls on the spectrum. Each of these girls is uniquely gifted by God and it seems to me that the more we know about how ASD affects them, the better equipped we will be as we guide them to grow into the woman God has designed them to be.

Wednesday, April 7, 2010

This and That

Dwight received a gift certificate for Pizza Ranch during teacher appreciation week, so we took the family out for pizza last night. It was a rainy, miserable night and we almost stayed home where it was warm and dry, but he convinced us to venture out. Not only did he want pizza, but he also wanted to go see the art display in the mall, as the work of some of his students was part of the exhibit. What a fun evening we had!

It was busy at Pizza Ranch and we saw many people we knew, as in knew well enough to stop and talk with them about various things. I couldn't help contrasting this with our last Pizza Ranch visit, shortly after we moved here, when we were still newbies and knew no one. This time we knew so many people that we felt like part of the community, a very nice feeling indeed.

The icing on the cake was when a friend from our church back in Holland walked in. He is out here working temporarily and recognized our van in the parking lot (not only is it exceedingly ugly, it still has Michigan plates and a Holland Christian Schools sticker in the window). His daughter and Maria are friends, so he quickly called his daughter on his cell so the girls could chat. It was so fun to see him and catch up a bit.

On another note, today Maria had her IVIG treatment. It was also the first day that the newly formed adoption group at her school was meeting and she wanted to go to the meeting. What a great opportunity to get her to try leaving the house while hooked up to her IV. We timed the treatment so that the meeting time fell in between her IV Benedryl doses. She took her portable pump along in a fanny pack. She has never done this before and was VERY worried about doing it, particularly about how the other students would react.

One of the things that she was worried about was that her pump would "beep" during the meeting so, of course, it did. The funny thing is that at first she didn't even notice her pump was beeping. The nurse had to go into the room and get her so they could fix it. Too funny! I'm glad that happened because then she could see that it was a non-issue. The whole thing went great!

I don't think we'll do this sort of thing often because toting along everything we needed was a bit of a production, but since the adoption group meets on Wednesdays and her treatments are every other Wednesday, we plan to do it a few more times. I am very proud of her for taking this risk and doing this, even if it did sap all her mental energy and we had to put up with a super grump this evening. (For some reason, this time the IVIG caused her to break out in a rash which was definitely a contributing factor to the grumpiness.)

Tuesday, April 6, 2010

Fireworks over Toccoa

I received an advance reader's copy of Fireworks over Toccoa by Jeffrey Stepakoff with the request that I review it on my blog.

This story is a combination of romance and historical fiction, with just a touch of a mystery thrown in. It is set in the small Georgia town of Toccoa in the 1940's. There are a lot of interesting details woven into this story, including information about fireworks, coca-cola, and life in a small southern town at that time.

The main character is Lily, only daughter of the prominent Davis family. At the age of 17, she marries the perfect husband and a few days later sends him off to war. Now three years have passed and he is set to return, but Lily wonders about the reality of being about to fit their lives back together knowing that they have likely both changed a great deal in those three years.

Enter the mysterious stranger. With only three days left until her perfect husband returns home from the war, Lily meets someone who captures her heart. Eventually she will have to choose between the two men. In the past, Lily has always fulfilled the expectations placed on her, but now she feels a strong pull to choose adventure over duty.

This story is very well written. It does have a longish "love" scene, which I could have skipped, but is otherwise a clean read. I found the characters interesting and the ending believable. If you are looking for a light story that reads quickly, this is it; just the right thing for taking along to read at the beach this summer.

Sunday, April 4, 2010

11 good things about Iowa

My kids told me that lists of 10 are "out" and lists of 11 are where it is at now, so fellow bloggers take note. Also, an important disclaimer before I begin: I am not saying that these things don't exist elsewhere or that they didn't exist where we lived in Michigan. These are just things we are thankful for here in this place that God has brought us to at this time.

  1. Friendly people. It really is remarkable how friendly everyone is here.
  2. Landscape. I love the rolling farm landscape. I admit that I don't always like the farm smells, but I think the views are beautiful.
  3. Dordt College. This is a great place to work and to learn. I know that I have said it before, but I Love Love Love working at Dordt.
  4. Dwight's work. Dwight has really found his niche here. He truly has a servant heart and I love how happy he is to be able to serve in the way he does in these little Christian schools. The fact that people bake him pies and his students bring him homemade treats during teacher appreciation week is just icing on the cake.
  5. Food. In season, we get great fresh local produce and the meat here really is the best.
  6. Small town ways. Life here seems to move a little slower. When Dwight goes to the grocery store, the butcher always has time to chat with him about which meat he should buy for dinner. People trust each other. People genuinely care about each other.
  7. Jon Felipe's teacher aide. I've written a whole post about the difference this wonderful woman is making in his life and we are so grateful to have her. I wish you could all see the way he has absolutely blossomed this year.
  8. Support for the local Christian Schools. The amount of support the local Christian schools receive from the community is nothing short of amazing. I'm not saying the schools have frills or fancy equipment, but families and churches are very invested in their schools and have been for generations.
  9. Faith. The Christian faith as we've experienced in the churches here and in interacting with the people here, is very real and very down-to-earth.
  10. Family time. As would be expected with a move, many things changed, including our time commitments, resulting in the wonderful gift of time to be a family. I love spending time doing things together as a family and I plan to jealously guard that time in the future. I have to add to family time, the joy we have had in getting to know my cousin George's family better. We just love George and Regina and their girls and my kids look forward to any time that we get to spend with them.
  11. Baked goods. There are great bakers and great bakeries here. The exception is donuts. I love donuts and I have not yet found a donut here that even comes close to a Donutville donut. There are lots of other marvelous baked goods available though and, needless to say, I haven't lost any weight yet.

Saturday, April 3, 2010

ASD Book

April is Autism awareness month. I have been reading several books on Autism Spectrum Disorders (ASD) lately and thought I would write about some of these over the course of this month. Today I want to highlight the book Quirky, Yes, Hopeless, No: Practical Tips to Help Your Child with Asperger's Syndrome be more Socially Accepted by Cynthia La Brie Norall. I thought this book contained a lot of helpful information and was very readable.

This book is intended to be used as a handbook or resource manual, so you could just read it straight through, which is what I did, or you could pick and choose the topics you are most interested in reading about and read them in any order. There are 85 topics, arranged alphabetically. This makes it easy to find the topic of interest. Some of the topics are bullying, homework, losing gracefully, and looking like you're paying attention. For each topic, an explanation is given for why this might be an issue for a child with ASD and then some ideas are provided for how to address the issue.

Dr. Norall began a program called Friends' Club 10 years ago to help children and teens with Asperger's syndrome learn behaviors that would allow them to be more successful in social situations. She started with 3 groups, 2 for boys and 1 for girls. This program has now grown to include 21 groups and satellite programs in other states have also been started. Most of the suggestions given in the text for addressing the above topics come from her work with these groups. Many of the ideas are simple and would be easy to implement, especially in a small group setting. While this book is geared toward parents, it would also make a good resource for teachers and other professionals working with young people on the autism spectrum.