Sigh of Relief

Today I had a wonderful first day of school. I was really anxious until I had students in front of me; then I felt like myself and I remembered how much I like teaching.  The kids were great. Some were very timid and nervous, others so excited they could hardly contain themselves...I love that first day, fresh start feeling.  Once again God's leading and timing are perfect; I am so glad He has given me this opportunity to get back into the classroom, especially at a great place like Zeeland Christian.

Home Again

We just got home from Chicago a couple hours ago. Ruby did great; she was very happy and content, even through two long days of therapy.  The trainer encouraged us by saying he is confident this therapy will continue to "normalize" the structure of Ruby's body. There is a lot of work to be done (years of work) but we believe she will steadily get stronger. The trainer was pleased with the amount of hours we put in. He took a lot of new pictures of Ruby and hopefully we will get to see them in the next month or so and then we can compare them to pictures from our first ABR session; I am guessing the changes will be more obvious when we look at the pictures side by side.  We were assigned 5 new exercises to do with Ruby for a total of 3 1/2 hours every day. We are going to do our best, but I think if we can get 2 1/2 or 3 hours in a day we are doing pretty good. 

We had a great time with Mark's cousin's family. They live in Chicago and they graciously hosted us at their house.  Thanks for letting us stay at your place Kurt and Lori! We really appreciated it; the food and conversation was great and Ruby was spoiled by your girls :) Thanks!

I have pictures to share, but I am ready for bed right now. I will get them downloaded soon.

All in all, it was a good trip and we are confident that ABR is the right therapy for Ruby.  I know we have a lot of work ahead of us, but I am completely willing to work, as long as we know it is effective for Ruby.  Now, we will have to work on finding the balance between teaching, doing therapy, playing with my kids, spending time with my hubby...etc. This will be tricky, but I know it can be done.

Thanks for your prayers!

A Change in Routine

I have been busy working at school the last couple days. It has been a lot of fun to get a classroom ready for a new school year again.  I am very excited to be teaching two days a week this year. As much as I love being a mom, it will be nice to get out of the house and play another role besides mommy a couple days a week.  Also, I love Zeeland Christian and I am thrilled to get to teach there again, especially because I get to teach with my Dad.

The last few days with Ruby have been good. She only had 2 weird seizures in the last week and her normal seizures have stabilized some; sleep has been okay-- at least better than a couple weeks ago. She has been fairly happy and she still is cute as ever :)  We head to Chicago tomorrow to have more ABR training with Ruby. I am very excited to get new exercises to work on and to see what the trainers say about her progress. We have seen positive change from ABR!

That all being said, next week will be a huge change in routine for us-- new job,  new ABR exercises, new role for Mark as a stay at home dad one morning a week, new daycare routine for the kids....I am very excited, but also a little anxious about how it is all going to go.  For two years I had nothing else to take care of beside my kids (that was plenty, trust me :). Adding a new job to the mix will be good for me, but I think it will be an adjustment for us all. For me, being able to take a part time job signifies that we aren't in "crisis" mode with Ruby anymore.  Don't get me wrong, we still fight hard for her seizure freedom everyday, but I think after almost two years of seizures, we have accepted Ruby exactly the way she is and are doing our best to make life manageable for the future- my job, hiring help cleaning the house and more respite care is all part of that.  Your continue prayers as we adjust next week would be appreciated!

The Latest on Ruby

The 24 hour video EEG is scheduled for Monday, Sept 13.  It is a relief for me to have that scheduled; I am actually looking forward to having someone else take a detailed look at her. Maybe this EEG will give the doctors new insight into what is going on in Ruby's head....who knows.  At least it puts off us making any decisions about her for a few weeks. 

She hasn't had any of the new seizures for over 48 hours now; I hope she gets a little break from them, although lately her spasms seem to be pretty bad too.  I am wracking my brain to try and think of why things have been worse lately when it seems like a couple months ago we were doing really well, but I can't really come up with anything that makes sense...'tis life with Ruby.

On a positive note, ABR is going well and physical we do see some positive changes with Ruby. I would say her head control is better, she can put individual fingers in her mouth instead of just a fist, she can pull her legs up under her when she is on her stomach and she can now consistently roll over from her stomach to her back (we are still working on from the back to the stomach...this is much harder, but she is getting closer :)  We can actually see changes in her chest and abs so we know her structure is "normalizing" because of ABR.  We are leaving for Chicago next Friday for more training and I am anxious to see what her ABR trainers have to say about all the work we have done.  A couple weeks ago we had to report how many manual ABR hours we had put in since our first training and I believe we reported working around 386 hours with Ruby since the beginning of April! This is not including all the machine hours she gets in at night. I felt pretty good about that number; hopefully the ABR trainers do too. Thanks for all of your donations that make ABR possible for Ruby! It is making a difference, slowly but surely :)

Yuck Yuck Yuck

In the past seven days, Ruby has had nine of these weird new seizures. Yuck! I was so desperately hoping and praying they would go away and we would never see them again, but that is not the case.  We have wrestled with what to do with these new seizures for a little while now. I hate to think about going back on seizure medication, but at this point we may not have another choice. The new seizures are scary to watch since she moans/screams while she is having them and she is so tired after them; it is like torture watching my beautiful baby go through this every day.

So, today I called neurology and we are trying to get a 24 hour video EEG set up at the hospital so we can see what is going on. If we are going to go back on meds, I at least want to know what kind of seizures she is having so we can give her the right medication.

We are discouraged, but my smiley little girl doesn't seem to be too phased by this all.  Hopefully, if we do go on meds, we will keep the smile and loose the seizures.  As always we appreciate your prayers for wisdom for the tough decisions and for peace that we are doing all we can do for our sweet Ruby.

A Day Away and a Concert

Thursday morning, Mark and I packed up the kids, dropped them off at babysitters and then hit the road for Frankenmuth.  Mark had business meetings Thursday and Friday morning so I decided to go with him for a night away.  I had a great time shopping at Birch Run with a friend (her husband works with Mark) and then relaxing and reading in our hotel room. Thursday night all four of us went out for dinner and got ice cream. Friday morning I was able to sleep in (this was amazing :), eat breakfast in peace and then sit in the hot tub! We had a great 24 hours away. The kids did fine; they were at babysitters for a few hours and then they got love from Grandma for the rest of the time.  Thanks for watching them Mom! It is a lot of work to get out the door for an overnight trip, but it was well worth the effort for Mark and I to have some quality time together.  I really cherish that.

Yesterday we went to the Unity Christian Music Festival in Muskegon because the band my brother works for was playing there.  Kyle is the sound guy and tour manager for a Christian band called Mike's Chair; they all live in Nashville, but they were doing a couple of concerts in Michigan this weekend.  We don't get to see Kyle in this roll very often because he lives 8 hours away, so it was fun to watch him work the controls behind a huge sound board at a concert with thousands of people. I was very proud of him and we really enjoyed the concert; Mike's Chair was great!

Zoo Pics

Here are a few pictures of our trip to the John Ball Zoo last week with Mark's family. We had a great time! It is a perfect size zoo for Charlie; he enjoyed looking at everything and just as we were finishing he was done. He cashed out in the car on the way home.

Charlie and his cousin Alex are only 3 weeks apart in age; it is a lot of fun to see them run around together.  We planned to push them calmly through the zoo in our double jogger, but I think by the time we got to the first exibit they were both hollering to get out and run :)

Uncle Michael showing Charlie the alligators

Charlie's cousin Bethany loves to help out with Charlie. Thanks Bethany for taking good care of him!

Mom and Dad TenHaken

Hey-- there's an owl!

My little cowboy

Charlie's favorite part of the whole zoo was the wooden train he could climb on.

Petting the goats

I realized I didn't take any pictures of Ruby; she pretty much dozed off in her stroller the whole day. She was calm though and that is a step in the right direction for her so we were glad she enjoyed the ride.