Thursday, January 22, 2015

Helping others



When we first came here the amount of homeless people were very evident. Marlee Anne wanted to help them all. If it were up to her we would have a house full of people living with us. We told her we would pray about how God wanted us to help them. 

When Abe passed away things within me weren't the same. The things I once cared about I no longer cared for. When Mary Elizabeth passed away even more of my passions died. One of those things that so many people have been praying about was crafting. I just didn't have the desire to craft. 

The night before Abe passed away my dear friend gave me a refresher course to knitting. I first learned to knit from the NICU Knitters who are the nurses in the NICU at Egleston. They taught me while Abe was in the NICU. After Abe passed away I could not bring myself to knit again. I could not even open the bag of yarn and needles that my friend Kati had given me. Kati continued to encourage me to try to knit again. You see Kati just celebrated the one year anniversary of her precious daughter, June's death. She  knows where I am and has been such a huge encouragement. 

I finally finished my first scarf just the other day. Since then I have made 4 more. I have decided this is the perfect thing to donate to the homeless shelter. I am going to do this in conjunction with Marlee Anne's UGA Miracle fundraising. If you would like to sponsor a scarf it will go to the homeless shelter in your honor and in memory of Abe and Mary Elizabeth. The money will go to Children's Healthcare of Atlanta. 

You can donate at the link below. Please make sure to make a note that you would like a scarf to be donated to the homeless shelter. Thank you for helping someone stay warm, helping children and remembering Abe & Mary Elizabeth. 

For the Love of Abe and the Joy of Mary Elizabeth. http://www.helpmakemiracles.org/participant/Abe






Saturday, January 17, 2015

Great day!

Friday we increased Michala's cannabis oil. It's midnight in GA so I can share this and call it a day. Michala had NO - yes that's zero startle seizures. That's the first time that she has ever been a whole day without any since she started having them. We almost went an entire day seizure free but at 4:00 she had a 6 minute seizure. That's what I would call an awesome day! Thank ya'll for your continued prayers!

Thursday, January 08, 2015

Cold in Georgia

So it seems Mike is being blamed for bringing the cold back to Georgia from Colorado. I for one am thankful for the blue skies, sunshine and warmth today in Colorado. I think the cold in Georgia is so ya'll will sympathize with me when I am whining about being cold. This too shall pass right? I have to say being in Colorado makes me more thankful for things at home that I too often take for granted. Praying God continues to mold us as He uses us where He has us. 

We adjusted Michala's cannabis oil recently to see how it would help. With the other formula she was still having wonderful cognitive improvements, better seizure control but still some break through seizures. Right now we are seeing some frustration and agitation as her body is adjusting to something new. Not at all unusual for her or with any type of medication change. We have gone back to a lower dose to see how her body responds. She still has plenty of room for adjustment if needed. We are hoping to see more and more improvement with this in the next few days as her body adjust and the medicine gets in her system. 

I am not sure how much I have shared about the specifics of what she is now doing on the cannabis oil. We have always talked to Michala through everything we have done, asked her questions even if she wasn't able to respond and had conversations with her. 

As we dress her we tell her what we are doing. When we put her shirt on her she would try to help put her arms in. Now more times than not when we get her shirt over her head she puts her arms in all by herself. She has never used her right arm much and had trouble getting it in her shirt. Now it's like she realizes she has a right arm and uses it. She even reached for her cup twice with her right hand the other day. Also when dressing her we tell her we are going to put deodorant on her. We help her lift her arms so we can apply it. Now when she sees the deodorant in our hand she will raise her arms. She sees it, the message gets to her brain and her brain reacts correctly. 

We have read and heard stories of how cannabis oil heals our brains and can help development. To see it actually happen is incredible. 

We have always given Michala hugs, love &'kisses and told her what we were doing. Now she does it on her own. Every morning when Marlee Anne wakes up she sits down in front of Michala and Michala wraps her arms around her, hugs her and gives her a kiss. Sometimes Marlee Anne will say squeeze me tight (this is something Granmama always said to us) and Michala will squeeze her. 

I am sure there are things I am leaving out. Oh yes! Laughing appropriately. Whenever we are watching something or Marlee Anne is telling a joke (if it's funny) Michala will laugh at just the right times even before one of us laugh. 

God is allowing us to see things in Michala that confirm we are doing the right thing. Days get long being away from home. We miss our family & friends. We miss our church. We miss our home. The saying "home is where your heart is" is so very true because my heart is in Georgia. No matter how hard I try, I think I will always be a Georgia girl. 

We try to stay busy so we don't dwell on Mary Elizabeth & Abe not being with us. Thankful Colorado has a lot of things for us to see. Thankfully they are free because two households in different states is challenging. Once again God provides through amazing people. So blessed!

We will be thankful to come home safely and legally with the cannabis oil when HB1 passes and growing has begun so that we can get the right cannabis oil that will help Michala, like we are getting here in Colorado. We will be even more thankful when children we know can reap the benefits we are seeing in Michala, that they so richly deserve. It's hard to know that this Miracle drug that can help so many is not readily available. It's hard to read about one of our friends suffering through seizures when relief is out there. We realize how blessed we are to be able to be here for Michala. We are thankful. 

Please continue to pray with us that Georgia does the right thing this year to bring all the families home and help so many other Georgians. Please reach out to your state representatives and senators to gain their support. 

Thank you Representative Allen Peake for your tireless efforts, incredibly hard work and huge amounts of love you have put into HB1. We are forever grateful to you, Betsy and Journey of Hope for changing Michala's life and giving her so very much! We love ya'll!!! 

Wednesday, December 24, 2014

We have been awake since 3:00 AM and my thoughts are all over the place. Missing my babies, missing mom, missing home, cold, overwhelmed by God's love and goodness, sad about Michala's seizures, thankful for the opportunity to try the cannabis oil, glad it is working for her, trying to balance life for Marlee Anne, thankful she has the heart she does, trying to learn to live life without our precious children, thankful they are with Jesus, thankful Mike is able to be here with us, thankful to those that have made that possible and so much more. 

Not sure how much Merry Christmas will be in the post but I truly wish ya'll a very Merry Christmas. 

Monday some dear friends from Georgia came to Boulder. They are a precious "C" family. They are the ones who show up at the hospital when you are inpatient at Christmas, they are the ones bringing dinner over, they are the ones dropping off cookies just whenever, they are the ones praying for the next scan way before it happens because they know your heart, they are the ones to text to see how it went and to make sure there is NED or no problems, they are one of the first ones to show up at the house when your babies have passed away. So of course they would be the ones to plan a trip to see us the week of Christmas knowing it would be a hard week. The distraction was nice as well as spending wonderful time with them. 

Yesterday was hard day for Michala. She had two bad seizures. One early in the morning and the next while we were out and about. So thankful Mike was there for them. He continues to be my rock. This morning she has already had two really bad hard seizures. It's time for an increase in her cannabis oil. Please be in prayer with us as we increase her dose this morning. 

Grace flies in tomorrow.  So thankful she will be here with us. That will help us get through these next few days, give us some wonderful time with Grace making awesome memories!

Christmas gifts have never been huge in our family but we have been blessed by surprises from others this year. It's been nice to be loved across the miles. The cards and letters are such a wonderful reminder that we as well as Mary Elizabeth and Abe are being remembered. Thank ya'll! 

Yesterday as we were walking around Estes Park right after Michala's seizure was over I received a text from a dear friend. I know she doesn't know just how much the timing of her text meant. She didn't know until then about Michala's seizure. Just knowing she was praying for us meant so much. Please never take the power of prayer lightly. We covet your prayers so much! 

Well I think this may be a long day for us all. Sorry for the random kind of mismatched thoughts post. Thanks so very much for the continued love, prayers and support. 



Monday, December 22, 2014

Fort Collins, Cameron's Pass & Wyoming

The past three days Michala has only had two-three very brief startle seizures each day. Tonight she enjoyed her daddy sliding her around on the frozen pathway. 


We had a packed weekend. Friday we enjoyed going to Fort Collins. We are still looking for a place to move to when we have to leave this house. Our friend told us to check out Fort Collins and Windsor. If anyone knows of a place or area for us to look please let us know. Please be in prayer about this with us too. 


Saturday we drove into Wyoming so we could mark off another state on our list. We didn't take any medical cannibis oil with us so we weren't breaking any laws. We saw some beautiful antelope. 


We drove through Cameron's Pass in Colorado and the snow was incredible. Just breathtaking. The beauty and the cold! 


Sunday we had a wonderful church service. Imagine 5,000 people holding lighted candles and singing Oh Holy Night. We met a precious older couple. Marlee Anne sat next to the wife and it was precious to hear her talk with her like she does with our dear friends at our home church in Georgia. 

As the days are leading up to Christmas my heart is heavy. As hard as I try and as much as I cry out to Jesus the tears still flow. I long for my precious babies. I am reminded of the sacrifice that God made when He gave up His son for us. He knew that Christmas when Jesus was born what was ahead. We are incredibly blessed and thankful! 

Thank you for your continued prayers!
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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?