Sunday, February 26, 2012

Lice, & Seizures

We have been busy at our house...

A little to busy.

At my last update we had just increased medications with Ethan. It has been really hard to get rid of these slight drops. He was having maybe 10 - 15 drops a day. The Keto team suggested that we increase his depakote again. Increasing any drug is always a hard thing for me to do. Sometimes it will work in the long run but other times it only makes his seizures much harder. This time it made them harder. Two weeks into the higher dose he has dropping so hard that he was smashing his face again. I have never really seen this drug decrease his seizures. The doctor staff thinks that we are just not at the right dosage yet. They are hoping things will get better with each increase. We have been playing with this particular drug for nine months now! 

So this last week I went with my gut and did something that went against everything the doctors have been telling me. I started to wean the depakote without their permission. (eek!) I was so scared at first but also SO incredibly tired of watching him hurt himself. He has one cut on his forehead that seems to never heal. It gets cracked open again before it has a chance to get better. I figured that if the depakote is making him worse with each increase, why not start to wean it and see if he gets better? Makes sense to me. So we did, and guess what... we have had what I want to say are some seizure free days!! He has had 2 drops (or so we have seen) in the last week and one grand mal. That is so awesome! I know the dangers of weaning a drug means increased seizures...but we aren't seeing any. Praise the Lord!

We have an appointment with the Keto team in Seattle tomorrow and I am going to have to confess what I did. :( I am not sure how they are going to take the news but I am so happy that his little brain is getting a break.

In other news Isabelle brought home lice from school. UGH! It spread to Ethan before I realized that Isabelle had it. :( So we had to treat everyone. But how do you kill lice on a keto kid? Well you use mayo. Yes, mayo. The kids had some time off of school called, "mid winter break" this last weak. So we spent one entire day putting mayo in everyone's hair and then walking around with shower caps for the remainder of the day. It was gross! Have you ever smelled mayo for 6 hours straight? Or had it run down your face and neck? So not fun. Oh and we also got some great "awkward family photos." The mayo only kills the live lice. So after a couple of shampoos to get the mayo out we then began the process of endless combing. We are still combing and combing five days later. The positive in all of this is that Ethan was having some good days so we didn't have a lot of seizures on top of the lice.

Whew! It has a been a long three weeks. 

Thanks for your prayers! 

Tomorrow as we meet with the Keto staff we could use prayer for:
Wisdom in decision making
A better eating plan for Ethan
Complete seizure freedom
A lice free home

Thursday, February 9, 2012

Go where you are sent

Life has been difficult lately.

But we are still praising the one who is sending us.

He has a plan and we will be faithful to follow his voice.

I was reading a devotional online the other day called,

Theology at Midnight.

It was so very good!

The author is speaking here in reference to Paul and Silas:

"There was nothing easy about being accused of disturbing the peace, being publicly disgraced, derided, maligned and vilified. Nor was it pleasant to be beaten or thrown in prison alongside men who were truly criminals. Certainly having your legs in stocks not only meant you could hardly move, it also meant you would have great difficulty lying down. So what do you do in that situation?

It all depends on your theology. If you don't believe in the sovereignty of God, then you'll probably be bitter and angry and very discouraged. If you don't believe in a God who numbers the hairs on your head (Matthew 10:30), then you may think that something terrible has happened to you. But if you believe in the sovereignty of God, then you know that nothing can happen to you by accident. In that case, your reaction is likely to be quite different.
You pray and sing hymns at midnight.
We find the key to the phrase "Go where you are sent" in the word sent. It means that in every situation of life, Higher Hands are at work, leading you on from where you are at this moment to where you are supposed to be next. Many times those Higher Hands will seem to lead you in ways that make no sense, and you may not see any purpose in the things happening to you."

Ethan broke his streak of 28 days without a grand mal seizure. He had one on the morning of the 29th day. It makes us happy and sad at the same time. We are so excited that he made it 28 days, and at the same time we are sad that he didn't make it longer. We are discovering that this thing called, "Doose Syndrome" that has over taken our lives is not bigger than our God.

Will God choose to heal Ethan? Well we are praying and believing so. But what if he doesn't? I don't want to miss the miracles that he is doing in our lives right now simply because I am waiting for the miracle that I want to happen.

Psalm 23:1 "The LORD is my shepherd, I shall not be in want."

I believe that he is leading us, I believe that he is my shepherd, and I believe that I have enough.

Thank you Lord for showing us your grace and your mercy. Thank you for your provision in our lives. Thank you for friends and family who love and pray for us daily. Thank you for the wise counsel of those you have put in authority over us. Thank you for loving us so much!

Sunday, February 5, 2012

Four Weeks!!!!

Today marks 28 days without a Tonic Clonic seizure!! This is his longest stretch yet!!!

We attended his first Sunday school class today. He was so excited! This past week I found out that there is a special needs ministry at the church! So I contacted the teacher and she was SO nice. Ethan got to meet her and the other kids today. He was thrilled to be able to go into a classroom instead of sit in the sanctuary. The teachers were amazing! So loving and understanding of all of the kids in the room. I am so incredibly thankful to those who are faithful to the call that the Lord has place on their hearts. I don't know that these ladies will ever understand how much of a blessing they are to all of these kids and their families.

Tonight I am thankful for:
people who give of themselves to help others.
less drop seizures.
28 days without a Tonic Clonic seizure.
the prayers of family and friends.

Thursday, February 2, 2012


Today marks 25 days without a tonic clonic seizure from Ethan! SO happy about this.
He is still dropping lots, but we are also making diet changes so I am expecting the drops to continue for awhile. Once he is adjusted to his new meds we are praying that the drop seizures will disappear. Will you pray with us?

Also today is February 2nd. Can you believe it?

Bob and I decided that we were going to do something fun for the kids that coordinates with Valentines Day. So I have been working hard on sewing felt envelopes for the kids. (Thanks Pinterest for the Idea) This is how they turned out:

We presented them to the kids yesterday. They were very excited! "What's in them?" they wanted to know. "Lots of love," we told them.  For the month of February as a family we will put love notes (and other surprises) in the envelopes. Then each morning we can check our own envelope for mail. Isabelle's eyes lit up. "You are going to write me a note?" She asked. "Yes and you can write notes as well."

The kids were so very excited that they hard time sleeping last night. Then this morning they rushed out to see what was waiting for them. It was so fun to see them reading their notes and also to see them get excited as others read the notes they left. 

When Isabelle and Isaiah returned home from school today the first thing they wanted to do was to write some more notes to put in the envelopes. :)

Thank you Lord for a loving family. Thank you for happy memories.