Merry Christmas!

We had a great Christmas Eve with my family last night. After church we went to my parents to enjoy soup and bread; everyone brought a different kind of soup this year and it was delicious. Then we opened presents and played a game. We laughed a lot and the kids did great! They stayed up way past their bed times but they were in good moods until they crashed. Even Ruby was giggling at 10pm :)

Our trip to MN has been postponed a day or two because of the nasty blizzard in the midwest. We were supposed to travel through the night last night, but we held off. Hopefully we can get out there tonight or Sat. night.

Merry Christmas everyone!!

Better

We are finally seeing glimpses of our old Ruby back. She is now on half the steroid dose we started with and she has been much more smiley and content. We haven't seen too many more seizures; are hope is even when we wean completely that the seizures will stay somewhat under control. Thanks for your prayers. We feel peace with our decision and are excited to just enjoy Ruby over Christmas break.

Done With Steroids

After a long week, Mark and I decided to stop Ruby's steroid treatments. After a 14 months of trying to fight these stupid seizures, we are tired. We are tired of dumping chemicals into our daughter's body, we are tired of making her feel miserable all the time, we are tired of trying to console her after we give her an injection each morning and we are tired of not being able to leave her with anyone in fear that she will scream the whole time. She is not herself right now and we miss our content and smiley little girl. It is time to accept where we are at with Ruby and think about her quality of life. We want her to be happy and content and the steroids made her miserable. If she was seizure free we would have maybe tried to push through, but we are still seeing a few seizures each day. After lots of discussion we just feel it is not worth making her go through another two months of this, especially since the seizures came back last time anyways. So, tomorrow we start weaning; we might be weaning for the next 3-4 weeks, but at least now there is an end to this misery in sight.

Part of me feels relief about this, but another part of me feels sad that it has come to this. For the last year we have always had another medical option to try and now we are at the end of that rope. The doctors don't know what to do with her anymore. Maybe this is when God will choose to do great things in Ruby's life, when all other options have failed. God is at work though and although it has been tough, I have a peace about where we are at.

A cool God thing--About a month ago, we sent a sample of Ruby's blood in to have some nutrigenetic testing done (this is part of the holistic health stuff I have mentioned before). It is hard to explain quickly, but basically we are putting her on a protocol that is supposed to help neurological inflammation, along with other things. The doctor we are working with tests for genetic mutations in kids and then sets up supplement and nutrition plans to help your body work around the mutations you might have. I wasn't expecting these results for at least another month! The timing was perfect. Just as we had to give up hope that the steroids would work for Ruby, God opened another door and helped us continue on this path of holistic health. We are excited at the possibilities that has to help Ruby reach her full potential.

God is good and although I don't always know what He is doing, He is at work and He knows what He is doing. He is holding us in His almighty hands; we are His servants and we humbly surrender to His will (that is easier said then done!)

Thanks again for your prayers. We are blessed to be a part of a community of believers that have been incredibly supportive through this ongoing journey.

Clingy Baby

Ruby has been a bear this past week. She is so fussy and she will not let us put her down without crying. We are tired of it and I feel so bad that she feels miserable. We aren't sure if she is having seizures yet; we think we have seen a few here and there. The EEG isn't for over a week yet; it would be so nice if it was tomorrow so we could confirm things. I am not sure what to do about all of this. We are sick of making her miserable with meds, yet we want seizure freedom....how hard do you push? Tough stuff-- we would appreciate prayers again for peace and wisdom.

The Turkey

As I mentioned before, Mark made the Thanksgiving turkey this year. After weeks of conversation, my mom decided to let go of the turkey making this year and let Mark have a stab at it. He researched recipes and decided to brine his 21 lb turkey, using a recipe from Emeril Lagasse. It soaked in the brine for 24 hours on Wed and then Thursday morning he got up at 5:30am to stuff and cook the turkey. We woke up to a delicious smell of the turkey cooking Thanksgiving morning. I have to admit that I was a little skeptical, but Mark pulled it off. His turkey was fantastic! My mom even said that now he has to cook the turkey every year. :)

Here are a few pictures from Thanksgiving...


Mark's brine soak for the turkey


The Chef


The finished product in the oven


Grandpa TenHaken and Charlie



Grandma TenHaken and Charlie

Stander

After several months, we finally got Ruby's stander last week! This is a piece of equipment that will allow Ruby to be in an upright position which is good for bone growth, circulation, balance...etc. She doesn't like being in it very much yet, but hopefully she will get used to it soon. A year ago I would not have been ready to have this thing in my house, but now, we are so ready for it. It will be great for her to not just be on the floor all the time.

Here are a few pictures...

It's Been a Little While....

Sorry for the long time between posts. It was kind of a long week because Ruby was fairly clingy and crabby. Thankfully we increased the dose of her sleeping meds this weekend and that seems to help her sleep longer. We still don't think she is having seizures, although we have been seeing a few weird movements here and there that we aren't sure about. She has an EEG Dec 21 where we will find out for sure if there is seizure activity. I will talk to neurology tomorrow to see if they want to increase her steroid dose before the EEG, just in case there are seizures going on. I don't want to giver her more steroids, but if she is still having a few mild seizures, then it would be worth it...hard to know what to do without looking at an EEG.

Besides worrying about seizure activity, we had a good weekend. Friday night we hung out with some good friends. Saturday, Mark took the kids to my parents all day so I could get a bunch of stuff done around the house-- it is so much easier to get work done when they aren't around :) Saturday night Mark's boss took us out for dinner and to the Grand Rapids Symphony Christmas pops concerts; we had a fabulous time! It was wonderful to dress up and get out with Mark.

Thanks for continued prayers... I will try to be better about keeping you all posted this week :)