The Weekend

Yesterday my husband turned 29 years old.  We celebrated by going to two Twins games in Detroit, one on Saturday night and then another on Sunday afternoon.  Great friends from Ohio met us for the games. Although the Twins didn't do so well, we did have a wonderful time catching up with each other and enjoying quality adult time (eating without a child on my lap was heavenly ) Charlie stayed with Mark's brother and Ruby stayed with my parents. We really appreciate that our families are so willing to take the kids overnight when we need to get away. Thanks Dad and Mom and Mike and Jess! The kids seemed to do well without us and we had a great time without them :)  Thanks for a fun weekend Scotty and Christina! 

I have pictures from the weekend, but I can't seem to find my camera at the moment so they will have to wait.

Happy Late Birthday Mark--I can't imagine walking this road without you. You are a huge support to me and I truly appreciate all you have give up for your family.  You take such good care of me and the kids. Thanks for always making me laugh. I love you and pray we get to celebrate many more birthdays together.  (Next year is 30!! Yikes!)

Rotten News

I talked to our doctor's nurse yesterday and she read me some of the EEG report so at least we didn't have to wait until after the weekend to hear something.  Unfortunately, the EEG was not good.  Ruby's infantile spasms have morphed into other seizures and now the doctors are diagnosing her with something called Lennox Gastaut syndrome. The EEG recorded Ruby having three different kinds of seizures on Monday alone.  I have read about this syndrome before and we knew Ruby was at risk for it, but I was hoping we would never have to walk down this road. Kids that have this syndrome have multiple different kinds of seizures that are very hard to control.  We were praying that when her infantile spasms changed into something else the new seizures would be something that were easier to control, but that looks like it won't be the case. 

Yesterday was tough. I feel like we have heard bad news from doctors again and again and I was really hopeful that this time around we would have some positive news....some glimmer of hope that my baby 's brain won't continue to be tortured with seizures....instead, we heard the opposite.  This just confirms that Ruby will probably deal with seizures the rest of her life and they will make it very hard for her to develop.

Today was a little better. I talked to the nurse again and we are going to start Ruby on a med called Zonegran. Hopefully this will make a dent in her seizures without taking away her giggle.  I did hear her contagious giggle a lot today which was a blessing. 

Thanks for your continued prayers for peace, we will need them. Thanks also to those of you who are helping by bringing meals. It has been a blessing to be well fed this week without having to cook! We appreciate all of you!

Bummer

Neurology called this morning and cancelled our appointment for this afternoon because Ruby's doctor is sick. I am so bummed because I have been waiting to hear what he has to say about Ruby's EEG! I am anxious and I just want to know what they think. Also, Ruby has had a rough couple of days with a lot of seizure activity so I really want to get her one some medication that will slow things down. 

They are going to call today or tomorrow to reschedule; I am hoping they can still get us in this week sometime so we don't have to wait the weekend again.  Prayers for patience would be appreciated!

Two Years Ago

Two years ago today, we got off a plane with a tiny, sick, scared, beautiful baby girl.  We were thrilled to have her in our arms and excited to see what God had in store for this little life.  Ruby Fendisha has drastically changed our world, in ways we never expected. We have been (still are) on a wild ride with her and it has been tough at times; she has stretched us in every way. Yet, God has brought her to our family for a reason and we are blessed to be able to love on her. She was ours from the minute we got that first picture of her.  This little girl is so deeply embedded in our hearts and minds; she has forever changed us.
Ruby Fendisha TenHaken we love you with all of our hearts! You are an amazing little girl and we know God has an incredible plan for your life!

Next Week

I just talked to neurology and they want us to come in for an appointment next Wed. to discuss Ruby's EEG.  I was hoping to hear something before the weekend, but it is better that we have the opportunity to sit down with the doctor and discuss everything before we make any decisions. We have questions to ask to so this will give us an opportunity to ask the doctor face to face, instead of going through the nurse on the phone. 

Monday all the pediatric neurologists in the DeVos office are going to be discussing Ruby's case, specifically her EEG. Please pray that God will give the doctors wisdom and insight into what should happen next with her care.  We are really hoping to come away with a clear direction for treatment next week and a sense of hope that something will work to control her seizures.  If you could storm heavens gates with prayers on Monday and again on Wednesday when we talk to the doctors, we would really appreciate that!!

No News Yet

We haven't heard anything about the EEG from neurology yet. I called yesterday and left a message so I was hoping they would call today, but they didn't. If I don't hear from them by noon tomorrow I will probably call again so I can have some news before the weekend.  I am really anxious to hear what they have to say. I am hoping and praying this EEG gave them new insight into what treatments might work for Ruby's seizures.  So, until then, we keep trying to wait patiently.  We will post again when we know more.

Daddy of the Year

When I left Mark with Ruby in the hospital on Monday night she was calmly sleeping, so I felt pretty good about how the night would go. I guess I should have been more worried, because Ruby was screaming mad for Mark from about 9pm-3am.  Mark slept maybe an hour and a half the whole night. The nurses tried to help, but no one could calm her down.  I am thinking she was so upset because her head was wrapped in wires, she wasn't in her own bed, there were weird smells all around...etc.  I feel so bad that I left Mark alone at the hospital while Charlie and I slept soundly at home.  He was a trooper though; I think he earned Daddy of the Year award after Monday night.

Thankfully, she did have one of her new seizures in the middle of the night, so they were able to record that.  We haven't heard anything from neurology yet. I will probably call by the end of the day if I haven't heard from them.  Hopefully they have a good plan of action for us.

So Far So Good...

Ruby's day at the hospital went well. She did not have one of her new seizures yet, but we are hoping she could have one tonight or tomorrow morning. (It is really weird to hope your daughter has a seizure, but we want the doctors to see it so they can help us with med decisions). I left Mark with Ruby at the hospital for the night and I took Charlie home and put him to bed.  He was whipped from playing with his cousin Alex all day. Thanks for watching him Mike and Jess!

We did meet the new pediatric neurologist today. He specializes in working with kids who have epilepsy that has proven to be hard to control. It was nice to have someone new look at her and give us a few ideas for possible treatments we could try. He didn't want to give us a for sure plan until he reads the whole EEG later this week. So for now, we just wait and pray that he has some good ideas for us.

Here are a few shots of Ruby from today..... all wrapped up like a wounded Civil War soldier :)
                                                             A little tired or bored maybe???

Trying to sleep...hard to do in a hospital

EEG

Tomorrow morning at 6am Ruby and I are heading to DeVos Children's Hospital for a 24 hour EEG.  We have to check in at admitting around 7am and shortly after they will start to hook her up to the EEG and then put us in a room where there is a camera on her at all times.  Then for the next day we just hang out and I push a button everytime she has something that looks like a seizure to me. The doctors will review the EEG and look at all the times I pushed the button to compare her brainwaves to what her body is actually doing on camera. This helps us to determine if all her weird movements are seizures or not and what type of seizures they are.  The information is crucial to making decisions about future medication for Ruby.

We would really appreciate your prayers for a helpful EEG tomorrow. It would be good if Ruby could have one of her new seizures while she is hooked up to the equipment so the doctors can see what is going on.  We are hoping that we will have some clear answers about if there is another medication that will help control Ruby's seizures. Mark is taking the night shift at the hospital with Ruby, so also pray that Ruby is calm for him and that he gets enough sleep to head into work the next day.  We will keep you posted! Thanks for your prayers.

Settling In

It feels like we are settling into our new routine.  I have two weeks of teaching under my belt and we are almost done with two weeks of Ruby's new therapy exercises.  I feel good about both.  Teaching again has been rewarding for me and I think two days a week is the right amount.  The kids seem to do fine with the slight change in caregivers. They both love their babysitters and they get to see more of Grandma and Daddy which is fun for them. I think I get more worked up then they do :)

We feel like we are getting a new schedule down with Ruby's exercises. We can get about a half an hour done before Mark leaves for work, I try to do another hour and a half while Charlie is napping and then we do at least another hour when Ruby is sleeping at night (once she has her sleeping meds in her she sleeps pretty hard for the first few hours). We are still doing about an hour of neurofeedback a day too, along with eating, naps, baths..etc...so it is a little tough to fit it in some days, but we do the best we can. 

Through all of this, it has been crucial for us to establish a routine that we can keep up through the whole year without getting so burned out.  To do this we have to have help.  Good friends from church have been bringing meals and we have a fantastic babysitter that comes a few times a week to watch the kids, clean and do therapy with Ruby. She has been a lifesaver!  This allows me to have a little more freedom to cook, clean, get groceries, spend alone time with Charlie...etc.  I took him to the library this afternoon; it was so much for me to do something completely normal with him. He LOVED having my sole attention and if you were at the Zeeland Library from 1-2pm today I apologize for the hyper, giggling, toddler running around the kids section :)  I guess he doesn't understand that you are supposed to be quiet in a library.

So- we are settling into a new normal again.  Ruby's mood and seizures are already constantly changing, so I was nervous and overwhelmed about how more change would go at our house, but it has been good. God is faithful and although we often feel frustrated and tired, we also feel a lot of peace and joy. We are especially thankful for the people God has placed in our lives who take great care of us.  We couldn't do this without a community of believers rooting us on.  Thanks!!

Chicago Pictures

Before we left Mark and Charlie mowed the lawn.

I promise I am not torturing her in this exercise.

Working on her shoulder

Ball rolling on her shoulder blades

Taking a break with Dad--- I rotated this pictures and then they rotated back, so sorry they are sideways!

Ruby's photo shoot for her comparison file.

Mark's cousin's girls took great care of Ruby!