Tuesday, December 09, 2014

One week on medical cannabis oil

It has been a week - 7 days since Michala started medical cannabis oil. I have tried a few times to put into words the changes we have seen. My heart is so incredibly full! I have tried to put the emotions aside so they wouldn't cloud my reasoning. As Mike says we are being cautiously optimistic. We have been through drug studies and we know the honeymoon period well, of starting a drug and it works well until the body adjust and it works no more. Also because of the studies we have been in we recognize the importance of journaling seizure activity. 

For those that don't know the, before CBD, here it is. Michala had 3-6 seizures everyday. The seizures lasted anywhere from 15 minutes- to an hour. These seizures interrupted her day, seemed to cause her pain and she would be out of it for quite awhile afterwards. She also had around 20 startle seizures a day. These would happen when someone coughed, made a loud noise, scared her and sometimes even if we called her name. They can last up to 5 minutes and sometimes go into a different type of seizures. She also had screaming seizures that were often tied into one of the other seizures. 

Day 1 she had eye contact with us. Not just a glance but real eye contact. Clear eyes, less nystagmus, which is where her eye moves involuntarily, decrease in seizure frequency, length and strength. She had 1 seizure that lasted 5 minutes and 1 that lasted 5 seconds. No screaming seizures. The 5 minute seizure was midday so it was recommended that we do the dosing 3 times a day instead of 2 times. She gets the same amount but we divide it by 3 instead of 2. She takes less than half a teaspoon the entire day. 

We have an office in our house where Mike works and Marlee Anne does school. As Michala was exploring, as if she was seeing this house for the first time, she went down the 2 steps into the office with no trouble at all. Before I got to her to video it she had already decided that room wasn't exciting enough for her and she was back up those 2 steps. 

That night as we were getting ready for bed I asked Michala for a hug. This is something I have done for as long as I can remember. I would put her arms around my shoulder and ask her for a hug.  I would pretend she was hugging me. This time when I asked her she leaned in and put her arm around me. She doesn't use her right arm so she put her left arm around me. Well she didn't before CBD. We are seeing her use it more. I also asked for a kiss like I always do. This time she leaned in to kiss me. 

I should have mentioned that before CBD she was in a lot of pain. We had to give her pain meds daily for the headaches she had, as well as the phantom pains she had. She would grab her stump from her amputation, because of her cancer and scream. This was a daily thing for her. Since starting CBD she hasn't had any pain medication. She doesn't grab her leg and has not held her head and cried in pain. 

Day 2 she had 3 brief seizures. They were so brief we are not sure if they were startle seizures or clonic seizures that just stopped and didn't go into a typical seizure for her. 

Again no pain meds, no screaming out. Oh yes and less aggression. She was taking Risperdone to help with her aggression and she has been taken off of that. She is still on her pharmaceutical seizure medications. 

Day 3 she had 4 seizures that we would call startle seizures or short seizures. They were very brief like a startle but there was nothing to startle her. 

Day 4 was a horrible day. She had 3 seizures lasting 50, 22 & 32 minutes. She had to have rescue meds to get them stopped. Deep breath here because I was unsure what was up. Michala typically has increased seizures with the full moon, rain and cloudy days. It was almost a full moon and a big storm was coming over the Rockies.  

Day 5 we were anxious to see what the day would be like after the day before. She had 2 really short cluster seizures. They were 2 and 5 seconds. Thankful for a much better day. 

Day 6 was 3 startle seizures that she recovered well from. These are ones we could have missed if we had not been right with her when they happened. One we thought she would go into a full blown seizure but even that one was over quickly. We met our friends from Georgia at their layover in Denver. Two of them asked Michala to give them a hug. She leaned in to hug them. This was good to see that it wasn't only when we asked her. 

Day 7 as we were praying this morning I asked Michala to hold my hand, because we hold hands when we pray, but she never has. When I asked her she reached over and held my hand. It was brief but she understood what I was asking her and was willing to do it without me reaching for her hand. She has never done that when I asked or held my hand even for a second. She had a startle seizure that was a hard one for her. It lasted a minute. She had 3 brief startles that were just quick jerks.

This morning she leaned in to hug and kiss me without me asking. It was after her yogurt and medicine so I saw it as her way of telling me thank you.

We are also seeing positive changes in her sleep pattern. There could be a couple of reasons for this. She is up and active all day long since starting the cannabis oil. She isn't taking all those seizure induced naps and missing things because she isn't having those seizures that cause them. She may take a brief nap if she is sitting with someone but that's not everyday. When it's time for her to go to bed she is sleepy and sleeps more soundly. She is not having those times where she wakes up throughout the night crying or screaming. 

We know we have a ways to go. We just started this journey but the first week looks so very promising. We are aware her seizures may start back and we may have to make changes to her dose. Right now we are so very thankful for this opportunity to help Michala in such a huge way. Thank ya'll for going on this journey of hope with us and keeping us in your prayers. 

Wednesday, September 03, 2014

Are you a Mary or a Martha?

Over the past month I have seen God use and bless us with many Marys and Marthas. A dear friend of ours is a Martha that we could not do without. She is constantly on the go, always offering to run errands and do whatever she can to help ease the load. One of our oldest friends has always been a Mary. I am not sure she has ever sat on any of our furniture. She sits on the floor usually with one of our children or at my feet listening intently to what one of us is saying. Our nearest and dearest is the perfect combination of Mary and Martha. She walks in and after greeting all of us with hugs she makes a quiet little swoop through the kitchen to tidy up or most times in my case clean up the kitchen, which includes the dishes she is sure to find in the sink from our last meal of the day. After that is done she plops down on the floor, usually with open arms for whoever can get there first to cozy up for comfort and love. With all of these come love and laughter. 

I am not really surprised when a "Mary" comes in but I do love to observe them. I love to see their interaction with our children. They greet them on their level, interact with them and quickly pick up on their likes. They take time to see which side Mary Elizabeth is favoring that day so they go to that side so she can see them easier. They realize right away Michala loves to clap and you have her heart with that. Marlee Anne is not your typical 12 year old girl. Most times a Mary will see that and immediately treat her that way. 

I love that our corner of the world includes both Mary and Martha because we need them both. Thank you to each of you for being that in our home. Just a little food for thought as you go through your day. Are you Mary sitting at the feet of Jesus listening or are you Martha busy, busy, busy? 

Saturday, August 23, 2014

Please leave negative at the door.

We don't expect 100% support from everyone. We know that some people will never understand it. What we do ask is that no matter what, you pray that God's will be done, you love & support us no matter what or at the very least you don't say anything, especially please do not be negative about it. We welcome questions to better understand the cannabis oil or why we cannot get it legally in Georgia but please do not tear us down or be negative about us doing what we feel led to do. 

This is not a knee jerk response that took place after Abe died. We are not entering into this without a great deal of prayer. We held onto HOPE that Georgia would do the right thing in 2014. When it didn't pass we started the process to get Michala & Abe into the Epidiolex study. The one that Georgia state representative Sharon Cooper said we would be able to do at CHOA before the end of the year. Yes she told it to our faces while we were at the capital waiting to get all 3 of our children in wheelchairs on the elevator. It's too late for Abe & it doesn't look like Michala is going to be able to get into it. Waiting is not an option at this point. 

It would be a lot easier to stay at home. Going to a different state to get our children help is not new to us. University of Alabama, Boston Children's, and University of Iowa have been our "homes" at one time. 

Mike will continue to work to provide for our family as he always has. Especially now because we will have 2 homes along with 2 sets of utilities and travel expenses. Our family will be apart once again. We will be leaving family, friends, doctors, and our local support system. 

We would love your prayers please. Thank you!

Tuesday, August 19, 2014

Such incredible pain

I have never experienced pain this intense. Even when we received the children's diagnosis or when the doctor told us Michala had stage 4 angiosarcoma cancer the pain wasn't like this. I have never experienced loss at this depth. I was a daddy's girl and hurt deeply when my daddy died. Even when we lost our little boy we never held. When my brother died I wasn't sure how I would make it without him. I lost my best friend in November when my mom died but still the loss wasn't like this. 

I know the scripture, I know that Abe is in heaven but still the pain is terribly intense. 

There are times when it hurts to even breathe. Sometimes I literally have to remind myself to breathe. Simple things in life are no longer simple or easy to do. 

I truly feel as if I have lost my joy. I feel lost. It's hard to pray and read my bible. There have been times like this when we are in the hospital and were told they wouldn't make it through the night but they have passed. Too much, too soon?

No matter what happens is the title for our family blog. The rest of the Johnson Brothers' song says I will give God the praise. Everything happens for a reason. I even preface that with I am a firm believer that everything happens for a reason. This too shall pass is something else I often said. All these things I have said so often and truly believed them. Where is that belief now?

Why the struggle within me? Why the battle?

I love to craft but just packed up all my ribbon without one single care. I love to write and share my heart. Now it's hard for my heart feelings to even get out. When it does my thoughts are jumbled. I am not able to read a book because within a few lines I forgot what I was reading. My love for TV and even Hallmark movies has faded. 

When I close my eyes I see Abe sitting in his car seat. His coloring as we have seen before when he has a seizure. I touch him expecting him to gasp for a breath but nothing. If I am able to drift off to sleep I wake up at 2:00 in a panic because he always had a seizure at 2:00 AM. 

As we try to do things together as A family there is a wheelchair missing, a car seat missing, Abe is missing. 
Some say it takes time. Some say 
you have to find a new normal. I don't want to find a new normal. I do want to find peace. I want to find joy. 

The tears continue to flow on a regular basis. Often a memory comes and I can smile. Sometimes I even laugh. There are 5 of us grieving, all differently, at different times, in different ways. 

My thoughts are jumbled. Maybe even though they are humbled they need to come out. They need to be shared. 

I wish I could hold him one more time. While I am holding him I want my mom to hold me. 

Sunday, August 17, 2014

3 weeks ago

Three weeks ago today we were driving home from Chicago. We had gone there for Michala's Aicardi conference. Since before that trip I haven't journaled at all. I had plans to journal about the trip once we got home. All the fun moments, all the hugs & love from our wonderful Aicardi family. The fun Marlee Anne, Grace & I had at Six Flags Great America. All that was clouded by our 6 year old son, Abe passing away. 

On the trip there and home he did wonderful. He will often get fussy with longs rides in his car seat but not this time. He had Marlee Anne on one side & Grace on the other. He would laugh out loud, smile & just really enjoyed the trip. He even got us with some real good poopy diapers. I remember so clearly when Grace started to watch Frozen. I had just finished feeding him & he looked over at her computer screen as if approving of her movie choice. 

When we got to Grace's house to let her out around 1:30 AM I reached back to pull her duffle bag out. When I did I noticed Abe's mouth was blue. My heart stopped. He often has seizures where that happens & had seizures all day just like every other day. I got back there to him & he wasn't breathing. I told Mike Abe wasn't breathing & I started getting him out of his car seat. Mike told Grace to call 911. Now as I type this for the first time it's like a horrible nightmare. Did all this really happen. 

Mike took him inside & we started CPR on him. Soon the fire, police & EMT were there working on him. It was like an out of body experience watching them & feeling deep in my heart he was already gone. My head was cloudy. My thoughts went to why, what happened, what could I or should I have done different, why him, why now, why God? Those questions still haven't been answered. 

Riding to the hospital in the ambulance with Abe in the back felt different this time. There was a disconnect. A longing for my son but knowing in my heart he wasn't back there. 

Once Mike got to the hospital the doctor came & told us Abe didn't make it. Keith brought Marlee Anne over to the hospital. I was thinking it could have happened in Chicago or on the way home but it was once we got to Covington, to Kim & Keith's. No rushing to call around to get someone to stay with Mary Elizabeth & Michala. Just everything was right except that this was my son that died. My son that I would no longer hold, touch, kiss, talk to & snuggle with. I don't understand. 

The next few days were a blur. I was there for his service, saw people, hugged people but still in this fog. Some say it's protection to help you get through those first few days. 

Friday after his service on Thursday everything went back to normal for others. The world went on while I was left to figure out where I fit in this world. I still had my rock and my 3 girls but a huge part of me was gone. Simple things like breathing were no longer simple. Every little thing takes such an incredible amount of effort. 

Sunday, July 27, 2014

The incredible journey I didn't choose

As we begin our 12 hour journey home I think back on the past few days & wonder where the time went. What a whirlwind. 

It begin with a very uneventful 12 trip from Georgia to Chicago. Some fishing for dad, Six Flags for Marlee Anne, Grace & I while Mary Elizabeth, Michala & Abe rested up from the trip. Not by themselves of course but with dad & I swapping off. You know to help keep some balance in our lives. 

The anticipation of seeing old friends, meeting knew ones, loving on precious girls & being in awe of some of the most amazing siblings & parents in the world. The spirits of these people shine. 

I have to say I was sad for the families that wouldn't be there this year. Some that I have come to rely on heavily through the years. Some that are so dear to our family. 

Without the Aicardi Syndrome Foundation this conference would not take place every other year. Without a very hard working & dedicated conference committee this weekend wouldn't have been as wonderful as it was. From the rooms, to the meals, to the resort, the classes, childcare, the dance, entertainment, the raffles, the slide show, the speakers. I hope each of you involved in making this weekend possible felt appreciated & were thanked for all your hard work. I know it took precious time away from your families for 2 years & more. Thank you from our family to your families. 

There were so many families I didn't get to talk to or meet. Just not enough time. So many precious friends I wanted to hide away in the corner with just to soak up their love to get me through 2 more years. Not enough time. Those of you I did get to love on, thank you! Thank you for refueling me to walk on. Thank you to each of you that pray for us & lift us up daily. It's truly felt. 

I hesitate to mention the specific blessing throughout the weekend because I am sure to leave something out. Please forgive me if I do. Grace making the 12 hour journey with us not only to help our family out but to help the entire time in childcare. Natalie winning a raffle & sharing it with me because she knew I wanted to win it. Hugs from moms & dads who wrap their arms around you & know that no words are needed. Their hearts know. To see Marlee Anne be a child with other siblings. For her to see the awesome siblings that are older than her that have walked this journey & turned out so incredible. For Mary Elizabeth & Abe to be awesome siblings too. For Michala to be loved on & enjoy being with her Aicardi sisters. To meet our "little sister" in person & get to love on her when everyone else wasn't. For my dear friend to take the time to teach me how to knit while I was thinking our hearts are so tightly knit together. For the laughs, the tears, the deep breathes, the prayers, reassurances, Starbucks, Culvers & all those other important things in life. To be reminded that even when we feel alone on this journey God has provided someone to be with us. 

Thursday, July 10, 2014

Six Flags

I had the privilege to go to Six Flags with our church youth group. It was an awesome day! I am so incredibly thankful for the wonderful memories that were made with Marlee Anne, Grace, Samantha & all the other youth that went.


I rode the Dahlonega Mine Train first because it was the first ride I ever rode with my daddy. LOVED that so much!

I got to ride Goliath for the first time. Let me just say this has to be one of my most favorite Rollercoasters. Really enjoyed it. Tough to beat Superman & Batman too. 

The new water park Hurricane Harbor is really fun too. Loved Tsunami Surge. 

I loved standing in line reminiscing about the people I have stood in those lines with. It was neat to walk through the park & remember what used to be in those places, like Buford the Buzzard. Remember the recording studio where you could record yourself singing on a cassette tape? What about the Chevy Show? 

The pictures are on the camera so I will have to share those later. I wouldn't have been able to enjoy this day without some very dear family & friends helping out with the other children & making this happen. It's truly takes a village! So thankful for ours! Very thankful for a wonderful day!