Kris and Hannah

 A few weeks ago, my baby brother got married to Hannah Nelson. She is a great addition to our family! I appreciate her passion for Christ, her sincerity and her love and support of my brother.
I am thrilled to have another sister!

The Bride and Groom at the rehearsal dinner

Annika (my other sister in law) and Kari (my sister) 

All the kids were in the wedding and walked (or were pushed) down the aisle

Kris and Hannah with all the nieces and nephews

We love you Kris and Hannah! 

Ringer T

I want to take a moment to brag about my brothers, Kyle and Kris Schonewill. Ringer T, the band they are in together, recently released their latest CD and it is great! I love the new sound; it is by far my favorite Ringer T project. These guys are incredibly musical and have worked hard to make this alternative folk rock album perfect.

I'm not the only one who likes their sound; they are a featured artist on Noise Trade this week!  

Check them out at itunes (search Ringer T) or on NoiseTrade for a free download, but don't forget to tip :) You won't regret it!

A Few Tidbits

A few things swirling around in my head....

-Diapers-- Thanks for your advice and encouragement about diapers on my blog and facebook. I cannot find any coverage for them which is a bummer. For now, I am going to stick with size 7 which I can order on Amazon or get at Sam's Club.  After that it looks like pull-ups (if I can get them on her) might be our cheapest option or it is possible to order them through our medical supply company and at least save the tax with a doctor's note.

-Seizures-- We saw Ruby's neurologist last week. Because she is still having one or two seizures each week, we decided to increase meds again. I was hopeful this would make a difference, but sadly she had two seizures yesterday.  She was so exhausted and cranky afterwards, that Mark stayed home the rest of the day with her and I took the other kids out like planned.  It is so frustrating to watch her seize; I feel helpless to relieve her discomfort. It is hard when her needs separate us as a family.  Her seizures are also reeking havoc on her sleep, which is tough on Mark and I.

I am thinking we will let things be for another week or so and if she continues to have a couple more then I will call neurology again and talk to them about another increase or a change. Medication changes can be tricky; it feels like more of an art than a science.

-Vacation-- Tomorrow morning we are all heading to MN for the week to visit Mark's family!  I have some work to do to pack everyone up today, but I am really looking forward to some family time.  If you could pray that Ruby handles the trip and the new environment well I would appreciate that.  Also pray her seizures stay away this week.

Diapers

Diapers. Ugh.

No parent likes diapers, but they are a necessary part of parenting.  I planned on putting up with diapers for 2 or 3 years (per child :) and then moving on to underwear.  Unfortunately with Ruby, this will probably never be the case.

Ruby has grown out of the biggest diapers I can find in stores.  I need to go online and find some "special needs diapers"; I have been putting this off for months now. I keep making her squeeze into size 6 diapers from Target, even though she has leaked through them several times.  As long as she is in diapers I can get at the store, it feels normal. Having to order diapers from a specialized website seems so "special needs"and much more expensive.

Today I am having a special needs mommy moment, maybe several of them.  Sometimes, this stinks.

Tomorrow I will feel better; I will order the diapers and we will move on with life. God's peace will continue to reign.



By the way-- if any of you reading this are in the same situation and can give me advice on what diapers to order I would appreciate it!

Montreal

Two weeks ago we had a whirlwind trip to Montreal for more ABR (Advanced BioMechanical Rehabilitation) training. It was a great trip; Ruby traveled well and we were once again encouraged to see the progress she has made.

Each time we go to Montreal, our ABR trainer takes the same pictures of Ruby's body. Then, when we go back for more training, we compare the pictures to see how things have changed. They also evaluate her body by working with her, but the photos allow us to see the changes very clearly.

Before we go to each training, we send ABR a video of Ruby. They study the video so when we get to Montreal, they already  have several new exercises ready for us. We spend the two days learning the new exercises, doing the picture session and sitting down with the trainers to go over pictures from last time and this time to see how Ruby has changed.

We are convinced ABR is changing her structure and will keep giving her more and more function. If you have a child with a brain injury that has affected his/her muscle function, please check ABR out. It is a commitment, but it has been so worth it for us.

Here are some ways she improved this time according to our report. The parenthesis are my interpretation :)

1) Release of shoulder stiffness
2) Improved segmentation between her arms and thorax (brain damages causes everything to be kind of  
     stuck together and we need to undo that)
3) Improved cervical inter-verebral space (more space between vertebrae)
4) Improved thoracic compressional strength/volume (her core is less "mushy" :)

Mark working on Ruby's neck

Ruby cashed out on the way home

Fehim our trainer showing us the neck exercise

 Mark working on Ruby's chest

Go Fehim! We love having him as our trainer.

Ruby hooked up to her therapy machine. Believe it or not Ruby sleeps with this thing on every night. It pumps her muscles through all night long. This it the first time we have worked on her knees with the machine. I am hoping that helps her bear more weight in the future.

Ruby's picture session. Fehim is here with Annie, the head of ABR Canada in Montreal.

Sweet Smiles

Update

I am happy to report that today has been uneventful! Ruby seemed back to herself and had a good day at school with no seizure activity that we noticed.

We talked to Ruby's neurologist today and he decided to increase one of her meds. We weighed her again this morning and she has gained a little bit of weight so we are hoping she just needs her meds to catch up with her growth.   We will see what the next week brings with the increase.

I shared about Ruby's seizures at Zeeland Christian staff devotions this morning.  They prayed for her and then they laid hands on me and prayed over me. What a blessing! I started my first class with tears still drying on my face but I feel so blessed to work at a place where I am surrounded by a community of believers who love and support me.

God's peace reigns.  Thanks for the prayers.

Prayers Please

My sweet girl had five seizures in the last 24 hours.  This is tough to swallow.

We had a year of hardly NO seizures activity. This winter we have been messing with a couple a month. Now she has had five in one day. Yikes.

I will call neurology in the morning.

Please pray this is some kind of fluke. Maybe she has an infection or illness going on; I hope there is a reason for this much seizure activity.  I really hate going down this road again.