It is Well With My Soul

                                                                              

The weekend was long and painful.

A few days after starting Vigabatrin, Elliott's myoclonic jerking returned with a vengeance and he also began having more seizures. Once, he started to giggle and he smiled. (this rarely happens so it's a treat when it does) I ran for the camera because I wanted to see if he would do it again... Instead of capturing a smile, he went into a tonic-clonic seizure that lasted more than 5 minutes. A tonic clonic seizure is when his eyes roll up in his head and his body is frozen stiff, the clonic part is that when this ends, his body begins to convulse all over. SCARY to say the least. This happened several times in a row, sometimes with the convulsions and sometimes without.

This behavior isn't something that I hadn't seen before, but it was increasing in length and intensity. He had more times of seizures than he had of peace. Generally after the cluster of seizures, he would scream, sometimes for hours. The Neurologist wasn't available to see us on Friday due to his heavy workload and then he lectured late Friday evening and Saturday. My only solution was to sedate him and keep him sedated around the clock. The scariest part of this was that even with the sedation, some form of the seizures returned. I was a wreck most of Saturday. Saturday evening, I finally decided, enough was enough. I began reading healing scriptures out loud over Elliott, I read through all of our Bible stories of children of promise and destiny (Moses, Isaac, Joseph etc) and worshiped, worshiped, worshiped until the wee hours of the morning. All of this was while holding him in my arms and as he gnawed on my shoulder, I spoke in his ear.

An interesting side note is that when Elliott is most upset, I whisper to him and sing. For about 3 weeks now, the only song he will calm down to is the hymn, It is Well With My Soul. I could sing any other song and he would cry. As I sang this one, he would calm down and generally go to sleep.

Sunday was a better day. Seizures were still occurring but not as frequent or intense.

Today, we saw Dr. Mbassi again. I LOVE DR. MBASSI. He is one of the best Doctor's that I have met in a long time. Another blog will be written about health care in Third World Countries... Doctor's spend 10 minutes with you, not touching you and arguing with you about why you are there and then send you home with an official diagnosis  of "looks sick" written in your medical book... but that's a rant for another day!

When speaking with Dr. Mbassi last week, he asked me to video tape as much as I could of the different type of seizures that Elliot was having and document any unusual behavior (which I was already doing, I'm anal! so I was happy that I had things in order)

This morning I went through all of the videos and labeled them with names based on what was happening in to him and the day and date that it occurred. I put them all in a nice little folder labeled seizure vids for Dr. Mbassi and thought I loaded them on my laptop. When we tried to retrieve them at the hospital, everything from my computer disappeared! The folder was there but empty. (mind you, I checked this TWICE today before leaving) The card reader that I have was left at home and my SD card couldn't read the pictures on my camera because I had filed them... I had saved them in Quick Time and Dr. Mbassi's computer couldn't open the files. AARGH. Dr. Mbassi calmly told me not to worry, we would find something that would work. He spent more than 30 minutes getting the files to convert into something he could see! Never have I had a Dr. in any country take this much time and have this much patience. I expected him to send me home to find the videos and come back another day. Nope. Oh, and did I mention that today was Dr. Mbassi's day OFF. HE DOESN'T WORK ON MONDAY'S. And yet, I have seen him on Monday's at least 4 times. Today was also another Public Holiday for Cameroon and after a crazy week and a weekend of lecturing, he should have been at home in his bed resting... Yet, here he was with the crazy Missionary, on the brink of tears, patiently trying to help care for our boy.

He reviewed the videos 3 or 4 times each and then began asking questions and evaluating Elliott. He finally concluded that the drug was indeed working. In a small percentage of people the seizure activity increases at the onset of taking the drug, while the body adjusts to it. Add to that we took Elliott off of another drug that he probably should have been weaned from and there you go. His poor little system was confused. (Toya's words, not the doctor's.)

So we have added an additional drug to help keep the seizures at bay while his body adjusts. It took us more than 3 hours and visits to zillions of Pharmacies but we finally found it! It's almost 8 p.m. and so far today Elliott hasn't had ONE seizure. God is so good and He's so faithful!

Before leaving today Dr. Mbassi said to me, You must be a woman of strong faith. Many people cannot handle these things. He said, this isn't your child, why would you take such measures for him? He asked me how I do it and if I ever have doubts. Oh yes, I do. and I cry, and scream and yell... but I also pray and search scriptures for answers and trust God to make His word a reality in my life and the lives of those around me.  Apparently, the doc has had patients who have "thrown" their children away after receiving these types of diagnosis. There are many reasons why I'm sure. Disabilities in any form in Africa are generally seen as a "curse" or witchcraft etc. The child is considered a burden. In the rare case that families keep the children, there are usually no resources available to them because medical care costs money that they don't have. The Social Welfare system here doesn't have the resources to take care of them either so people do the bare minimum and it's usually not enough.

The BEST, BEST, part of my day. He looked me straight in the eyes and said, "Let me assure you, this is not the worse case of West Syndrome that I have seen. You are fortunate, you were able to afford an MRI and we have clear pictures of his brain and what is there. I have hope that he will get better. I am encouraged that there has already been progress with him in the short time we have been treating him. If we can get the seizures under control, I think he will begin to develop normally. It will take time, but I believe he will get better." He can't tell me how much better. No one knows. There are already many dead Neuron's in his brain but we caught things early and while he may be slower than other children, he may eventually catch up. 

In the short time that Elliott has been treated, his little hands that were permanently balled into fists have become loose. His arms move and he is now able to suck his fingers (although it scares him sometimes) He can lift his head and shift his body and his legs aren't stuck in a permanent "lock." He recognizes certain people and his eyes have begun responding to light. I could go on and on. All of this is to say how faithful God is and that he is still healing people.

We had a great discussion about faith and what I believe and why I do what I do. His final statement to me... Surely God is preparing you to take care of your own healthy children and husband one day! (Everybody thinks I have to be married! so funny) Anyway - he thanked me for talking with him and thanked me for caring for Elliott. I told him that it's not ME. It's God touching the hearts of all of YOU that make any of this with Elliott possible.

He had an MRI, we were able to travel to Yaounde and he can eat on a daily basis because you gave sacrificially and you are faithful to pray. I'm so grateful to everyone who has helped us, who encourages me and who loves the Lord enough to serve a child without a hope for a future otherwise. I am just the fortunate one who is able to hug and squeeze him and feel his heartbeat.

This isn't easy. Many days I wonder what in the world I'm doing in a Third World Country with a random child. There are days when I wonder if we will be able to keep up with his food and medicine and diapers and always when we are running out, help always comes.

I'm so grateful. I love the Lord and I love all of YOU. We will stay in Yaounde a few more days to be sure the new drugs are working well and then I will head home to Buea to prepare for the 3 Mission teams I have coming in the next few weeks.

I'm sure if Elliott could talk, He would say, Thank You! Thank you, for giving to the Lord, I am a life that was saved... In more ways than one.

I'm looking forward to the day when he is telling the testimony of his life. How he could have been  "thrown away" and forgotten, but people all over the world cared enough to be the hands and feet of Jesus here on the earth so that lives could be forever changed. My prayer is that through his life, many others will also be able to say with conviction that, It Is Well with their souls...

Blessings!