The last couple of months have been wonderful for our family. We have seen a huge improvement in Ethan which has made everyday life a little better for all of us. In early November of 2012 we started weaning the keppra. It took 6 weeks but we slowly saw our child re-emerging. When the drug was completely out of his system he was talking and playing again. He even started putting several words together...to communicate what he wanted. It was amazing to watch. I distinctly remember hearing the word, "Christmas," come from the back seat as we were driving to church one evening. Bob and I looked at each other and smiled. I turned around and he was pointing at the Christmas lights. "Christmas!" he said again. A two syllable word!! Oh Praise the Lord! Also he has been trying things that his syblings are doing. We saw him try to slide across the kitchen floor on his socks like his sister. He has seen her do it many times, but usually he just laughs at her. All of sudden he was doing it too! So many things that we are thankful for.
So as we are experiencing this "new" child, we are also asking ourselves, "Why did we have him on this medication for nearly 2 years?" It was actually causing the drops, or at the least making them worse. So at this point we were also asking ourselves...what about the depakote. He is still have slight jerks, (seizures) but nothing like before. He is not slamming into the floor, or walls anymore. He is actually taking part in conversations, and laughing. So our thinking was why not wean the depakote too? The ketogenic diet is the only thing that we have seen progress with. He was on all of these medications before we ever started the diet, and at that point he was up to over 100 seizures a day. Did the meds work then? Well the doctors tell us that the medications are doing something and that it would be worse if he wasn't on them. Really? I am not so sure. What about the keppra? Now that he is off of it he is not grumpy, dazed or confused. He is not having nearly as many drop seizures. I think that every kid is different, and you can't use the generalized idea that epilepsy is best treated by medications. We tried that for nearly 2 years. So we decided to start weaning the depakote. We took him down just a tiny bit each week and saw him getting so much better. The drop seizures were less dramatic. We even saw what we think were a few seizure free days. He was so happy. I don't think we have seen him this happy and engaged in what was going on around him in since he was two. (Before the seizures started.)
So that brings me up to about a week and half ago. We all of a sudden saw the grand mal, (Tonic Clonic) seizures re-appear. He was doing so well. But he had 2 (Tonic Clonic siezures) in the same week. Still no drop seizures. We called the doctor to report them and they told us to put him back on the depakote. What??? Really??? We know from the last two years that anytime we increase that drug Ethan will literally loose it. He will fly into walls, doors, and floors. It is horrible. But the grand mals are scary too. So we added two pills back. (per the doctors orders) One in the evening and one in the morning. Now we are totally regretting it. His speech is so slurred. He is cranky, and drop seizures are back. They are hard and nasty. Just imagine a bowling ball being dropped. That is what it is like only the ball is his head. No warning, just nasty falls. I really hate these drugs. I really hate epilepsy.
We have a meeting with the Neurology team on Tuesday. Not sure what is going to happen. They believe in keeping him on these nasty drugs and I don't want to anymore. I would almost prefer the grand mal seizures to the drop seizures. At least he is happy, and coherent the rest of the week. Right now he is drugged and falling down constantly. His poor forehead is so big and black. It looks like it is about to burst open.
We need your prayers for the Neurology staff meeting on Tuesday. We need to make a change. But at this point it is all a guessing game. No one knows what the right decision is. Please pray for guidance from the Lord. Only He can direct us at this moment. Ethan needs to get better not worse. At this point we are on a downhill slope again....
Monday, January 7, 2013
I found this letter the other day. It seems to capture my thoughts and feelings about all of my "Special Friends." So many of you that I have never seen face to face, and others of you that I have met because of our "Special" situations. I believe that God has given each of you to me during this season of life. Thank you for walking this road with me. May His grace be with you today as you continue the journey.
To my special friends, Many of you I have never even met face to face, but I've searched you out everyday. I've looked for you on the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are well-worn. You are strongerthan you ever wanted to be. Your words ring experience, experience you culledwith your very heart and soul. You are compassionate beyond the expectations ofthis world.
You're my "sisters." Yes, you and I, my friend, are sisters in a sorority. Avery elite sorority. We are special. Just like any other sorority, we werechosen to be members. Some of us were invited to join immediately, some not formonths or even years. Some of us even tried to refuse membership, but to noavail. We were initiated in neurologist's offices and NICU units, inobstetrician's offices, in emergency rooms.. We were initiated with sombertelephone calls, consultations and evaluations.
All of us have one thing in common. Yes, one minute everything was fine. Then,whether it happened in an instant, as it often does, or over the course of a fewweeks or months, our entire lives changes. Something wasn't quite right. Then wefound ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's specialneeds. Some are unable to talk, some are unable to walk. Some live in adifferent world. We do not discriminate against those mothers whose children'sneeds are not as "special" as our child's. We have mutual respect and empathyfor all the women who walk in our shoes.
We are knowledgeable. We have educated ourselves with whatever materials wecould find. We know "the" specialists in the field. We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests thatneed to be done, we know "the" degenerative and progressive diseases and we holdour breath while our children are tested for them. Without formal education, wecould become board certified in neurology, endocrinology and psychiatry.We have learned to deal with the rest of the world, even if it means walkingaway from it. We have tolerated scorn in supermarkets during "tantrums" andgritted our teeth while discipline was advocated by the person behind us inline. We have tolerated inane suggestions and home remedies from well-meaningstrangers.
We have tolerated mothers of children without special needs complaining aboutchicken pox and ear infections. We have learned that many of our closest friendscan't understand what it's like to be in our sorority, and don't even want totry.
We have coped with holidays. We have found ways to get our physicallyhandicapped children to the neighbors' front door on Halloween, and we havefound ways to help our children form words, "trick or treat". We have acceptedthat our children with sensory dysfunction will never wear velvet or lace onChristmas. We have painted a canvas of lights and a blazing Yule log with ourwords for our children. We have pureed turkey on Thanksgiving. We have boughtwhite chocolate bunnies for Easter. And all the while, we have tried to create afestive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'dmake it through another day, and gone to bed every evening not sure how wedid it.
But we, sisters, we keep the faith always. We never stop believing. Our love forour special children and our belief in all that they will achieve in like knowsno bounds. We dream of them scoring touchdowns and extra points and home runs.We visualize them running sprints and marathons. We dream of them plantingvegetable seeds, riding horses and chopping down trees. We hear their angelicvoices singing Christmas carols. We see their palettes smeared with watercolors,and their fingers flying over ivory keys in a concert hall. We are amazed at thegrace of their pirouettes. We never, never stop believing in all they willaccomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tightto their little hands and together, we special mothers and our special children,reach for the stars. ♥
Tuesday, January 1, 2013
Wow a whole year has flown by once again.
We have had our ups and downs just like so many others.
But through it all we remember to look for the hidden blessings. At the beginning of 2012 we started a "blessings jar." The idea was to always be looking for the hidden blessing in the day. Each and everyday has its own troubles, but there are always things to be thankful for. So we told the kids that when they spotted those blessings they could write them down and we would soon have too many to count.
Today being New Years the kids were so excited to open the jar and read all of their entries from the past year.
There were so many memories of God's provision, His love for us, and His grace upon our lives.
In the midst of a family dealing with seizures non stop, there are still blessing. SO many things to be thankful for. It was wonderful to hear the kids read back the things that they had written. Also I loved seeing their faces as they realized that others in the house were thankful for them, or things that they had done.
These are few of our favorites:
A few favorites written out incase you don't seem them in the picture:
Ethan: Thankful for fish, for playing in the dirt, and corn dogs
Isabelle: Thankful for Naomi, starfish, and pink rain boots
Isaiah: Thankful for new friends, (David & Jontay) and teachers
Rebekka: Thankful for God providing friends, Lisa teaching me how to get gas at Costco, money provided for medical bills, a full freezer of meat, a husband that loves me, a day with only 3 seizures, and a warm house.
Bob: A movie with friends, a father daughter birthday date, smiles from Isabelle as she learns to ride her bike, cleaning a friends yard, a date with my wife, a no helmet day for Ethan.
Happy 2013 everyone!