Thursday, April 23, 2015

On the move!

As I pack up to move to our second "home" in CO I pray the next move is back to our HOME in GA. That would mean in 3 months some things really have to change. At first I think no way, then I think back on this past year to the handful of families, a strong little warrior, the mommy lobby, those precious daddies, the fearless leader, along with strong legislative supporters under the gold dome that did more in GA than I thought could happen. I think back to what we had to do to get to CO, who we lost in the planning stages, the man that was waiting to give Michala some liquid gold, the change the first dose made, the church family God provided us with, the GA friends He surrounded us with, the CO peeps we have fallen in love with and this beautiful state. Why put limits on God? I know if it's His will it can be done in 3 months. If not He will open the door for another place and He will continue to carry us on this journey. 

Sunday, March 22, 2015

God's Hand

When we moved to Colorado I was beyond scared. I mean I knew without a doubt God was leading us here but it was such a huge leap of faith. Especially for this Georgia girl who had never lived anywhere other than GA, except for Iowa for 7 weeks. Would the cannabis oil work, would I be able to drive in the snow, would we find a church, would we make friends? The biggest was how could I do this without two of my precious babies? Also my husband not being with us everyday? So thankful God continues to open doors for us and shows us His hand through it all. I am going through a grief workshop at church and it's so hard. I know that it is and will continue to help. As we begin looking for a new home we are praying God will show us the way. 

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.

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!