Thursday, February 28, 2013

Seizure Free



We are so completely overjoyed at the moment.


It is so hard to put into words all of the emotions that we are feeling.


Just short of two years ago Ethan had his first seizure. That seizure turned out to be the first of thousands. Our life was turned upside down. You can read more about that here

In recent blog posts I had stated how frustrated the doctors were, and that they didn't know what else to try. Ethan has failed every drug he has tried. The ketogenic diet did seem to lesson the amount of seizures he was having everyday, but slowly the numbers went back up. Soon he was back up to having 20-30 drop seizures a day and absent seizures every few seconds. So we continued to pray. 

Then last week as were asking the Lord want to do, he brought a person to mind that was able to offer another perspective. She is a specialist with the keotgenic diet. She suggested adding fish oil, COQ10, and folinic acid to his diet. For those of you not familiar with the ketogenic diet let me just say that this is not as easy as it sounds. I had to search out the right brand of each supplement making sure there was no sugar or carbs in them. Then I have to get him to take them. Remember he can't have sugar, and he has never swallowed a pill, so how do you hide them? The form they come in is a gel cap, almost like a vitamin E. So I knew I wasn't going to be able to crush them. It was big undertaking. So when the supplements arrived in the mail we opened the bottle of the fish oil and gave him one. He proceeded to chew it up and ask for more. Ewww! Isaiah and Isabelle were laughing and of course Ethan loves attention so it worked out well. Everyday since then he chews them up and we all tell him how great he is for eating them. 

Just two days after starting the supplements we noticed a huge decrease in the number of seizures he was having. Then on Monday he only had one slight twitch. Tuesday was our first seizure free day in nearly two years. It was an amazing day!

Today however marks day number three of being seizure free!! We are praising the Lord for his faithfulness through all of this. He is so good. 

Here is a video clip that we took at the end of day on Tuesday, February 26th 2013. It was his first seizure free day. 

video


Thank you so much for praying! 

God has done a miracle! 

Please keep praying for him as we know it will take time for him to heal.

"Give thanks to the LORD, for he is good. 'His love endures forever.'"

Psalm  136:1





Sunday, February 24, 2013

12 days

We are 12 days into the depakote wean and he is doing well. To be honest he is a little better than well. He is talking and playing with his siblings. This makes my heart so happy.

The first 8 days (or so) after we decreased the medication we saw an increase in seizures. There was an increase in both number and intensity. I remember on one occasion (he did not have his helmet on) he had a drop seizure in his brother's room and put a big goose egg on his forehead. They were playing with legos and he was standing to close to the book shelves. Lots of ice and a few hours later he was ok. Although the goose egg was so big that his helmet didn't fit for awhile.

We see him get better after each decrease of medication. It just takes about 8-10 days for his body to adjust to the change. But after that time he is so much happier, and he has less seizures. The last two days have been wonderful. We have seen just a few slight jerks. (Insert big smiles here) In this roller coaster of seizures we know that his body will slightly increase seizure activity again soon. Then it is time to drop the medication again. It is almost as if his body is saying, "This stuff is making me sick." But we can't take it all away at once or he will have bigger problems. Believe me I wish we could.

Also we have consulted another specialist on the ketogenic diet and she has recommended adding several supplements to Ethan's diet. So far we have added fish oil, and COQ10. He cracks me up because he will just take the pills and chew them up. ewww!! The other kids laugh, which makes him want to do it even more. He doesn't know how to swallow pills yet and I was concerned about how I was going to get him to take them. They are oil gel caps, much like vitamin e. Tonight we will add folinic acid to the list of supplements.

It has been really nice to have a few restful days.

Much prayer would be appreciated for the next couple of days. After church today we caught him in his room with Isabelle's tootsie pop she brought home from her class. I was a little surprised. He doesn't really ask for food from anyone because he knows that he can't have it. However, as he has been coming off of the medications he has become more and more alert. He is not so "zombie like," anymore. He is now aware that he is missing out on things. We are all praying that his ketones stay high through the night and that he doesn't have a grand mal from the sugar.

One day, one step, one moment at a time.

Thank you again for your prayers.

********UPDATE:  2/25/2013

No seizures in the night and his ketones remained high!! Praise the Lord. Today he attended his preschool class and the teachers were shocked that he didn't have a single seizure in class!! So excited! They usually see to many absence seizures to even count them all, and about 6-10 drops (where he actually hits the ground) in the two hours that he is there. We are hopeful that God is answering prayers! Thank you all so much for praying.

Friday, February 15, 2013

Faith is a Journey


"Faith is the confidence that what we hope for will actually happen, it gives us assurance about things we cannot see." Hebrews 11:1


Some times I have moments where life seems hard, a little to hard. At those times it is easy to fall into a pattern of heart ache, and selfishness. Then all of sudden perspective hits. While sitting in hospital rooms I see other parents losing their children to cancer. I see single moms who are being told that they may only have a few hours left to hold their sweet babies. I am blessed to get to hold my child every day. He is still with us, and I am so very thankful. 

After nearly two years of daily seizures (some days 100+) our faith is what has kept us going. We know that God is with us. We have been asked many times over the last two years, "How do you have faith in a God that is not healing your son?" Our answer, "God is God and we are not." I have the faith to believe that Ethan will be seizure free some day. It may not be while he is still here on earth, but someday he will be. Right now God has asked us to be faithful and trust in his plan. That is incredibly hard for this control freak momma to do sometimes, but I know that God is the one in control not me. As I was reading through Hebrews 11 today I was reminded of all of the people throughout the Bible who had enough faith to do what God asked them to, even though they really never got to see the outcome. 

So as we take the next step in this faith journey we are asking for your prayers. We got word just last week this team of doctors in Seattle is out of ideas. "Ethan is puzzling us," they said. No medications have worked thus far, so trying new ones doesn't seem like a good option. Currently his blood levels are showing that the medication is hurting his liver, and his kidneys. After much prayer we have decided to wean the last medication that he is on. It is not an easy decision as nothing we do with this child seems to calm the seizures. However this particular medication and ketogenic diet seem to be interfering with each other. There have been quite a few parents that have reported their kids get better when the medication is removed. The hard part is removing it. It has to be done incredibly slow, and each reduction brings on more seizures. But the long time in-between reductions is very important. It gives his blood enough time to level out, and his brain can adjust to the change very slowly. Ethan is on such a high dose of medication that it could take over a year of weaning to get him all the way off. That is  going to be quite a journey. 

A promise from the Lord found in Isaiah 30:18-21:
"So the Lord must wait for you to come to him so he can show you his love and compassion. For the Lord is a faithful God. Blessed are those who wait for his help. O people of Zion, who live in Jerusalem, you will weep no more. He will be gracious if you ask for help. He will surely respond to the sound of your cries. Though the Lord gave you adversity for food and suffering for drink he will still be with you and teach you. You will see your teacher with your own eyes. Your own ears will hear him. Right behind you a voice will say, 'This is the way you should go.' "
We are asking for your prayers as we start this new leg of our faith journey. We are calling on the Lord for help and we believe that God is faithful to his promises. So no matter if we get to see the outcome or not we must be faithful to what he has asked us to do. 

Friday, February 1, 2013

Toxic

About a week ago after all of the labs were drawn we finally got word that Ethan was indeed on way to much medication. His levels of depakote were toxic. So we took him down to 375mg in the morning and 500mg in the evening. His energy has started to return in the last several days, and he is even a bit happier and his seizures are a little better. He is only hitting the ground about 10-15 times a day, but the absence seizures are every few minutes. Way to many to count. :(

Today as we entered Seattle Children's hospital (for the 3rd time in 2 weeks) the check in clerk said to me, "Hahn right? This is Ethan?" In shock for a moment I wasn't sure if I should be happy that she remembered us, or troubled. She checks in hundreds of families at the door each day.  "Since you are here so often I can issue you name badges that are good for six months. That way you don't have to stand in this line each time you visit." --Needless to say we can now sport our name badges at home if we want to.

After everyone was checked in we headed over to the lab to have his blood drawn again. He is such a trooper. Bob gets him all excited about picking out the color of the bandage before we even go in, and the then the blood draw is usually tear-free. We won't hear anything on the results until next week. I know his ketones have been low, but I really think that the depakote is preventing him from producing high ketones. I praying that we can get them back up in the 5 range. Last week he was at 3 and the seizures are showing it.

Also he is losing weight. We may have to increase his calorie count, but we know that he is very calorie sensitive. The more we increase the worse the seizures get. However now that we have gone down on the depakote he is more active and maybe he needs more calories? Not sure.

Would you all please be praying with us over the next serval weeks. It is so hard to watch him go backwards. Over Christmas he was doing so well. We even thought we saw some seizure free days. Now we are not sure what is going on. We need to hear from God so we know which direction to go. At this point he is puzzling the doctors. We have had several phones calls from them, and each time they say, "we have had emails going back and forth between the team members all day and we are all puzzled."

Father, I ask you to please put your loving hand on Ethan's brain. We want healing. Please guide the doctors as they search for the answers. Bring things to light that need to be helped. Show them which path we should take. Thank you for being in complete control. We trust you in everything, and thank you for each and every moment that we get to spend with this child.