Monday, March 26, 2012

Appt update

Well we are heading home from our whirlwind appts. It's a long day but easier to do it in a day than getting a hotel room & having to pack all the medical equipment for one night.

Mary Elizabeth & Abe both were due for X-rays. Mike & Marlee Anne took them while Michala & I answered all the nurses questions to update everyone's charts.

Dr. Westberry saw Abe first. He said his X-rays showed the bones in his feet out of place from clubfeet. He said that if they started giving him trouble he would do surgery.

Michala was up next. Her spine looked good. When she checked her stump she could tell right away how sensitive it is. Michala has been having some pain with it. She suggested trying some neurontin but we have to check with Neuro to make sure it's ok with her other meds.

Mary Elizabeth's curve was slightly worse but she suggested just to watch it which we were perfectly happy with. Her hip is slightly more uncovered than it was & stretched but she said not too bad. She suggested trying some baclofen to help with the tightness in her hamstrings.

All in all good appts & we don't go back for a year. Yay!!!

On the way there we got a call from our sweet friend Connie. She said her friend owns a restaurant in Greenville & would like to have us there for dinner. Well if you are ever in Greenville stop by the Fitzpatricks Pub. The food & the service were great! What a wonderful treat & such a blessing.

If you read this before midnight please pray for our trip home. Mike driving & not getting tired. Please pray the children & I ride well without getting upset. So far that's not working so well because Michala is very unhappy.

Thanks for the prayers for a safe trip there & good appts!


> While we are traveling to Greenville I thought I would try to get caught up on updates.
> Friday we met with the surgeon about Mary Elizabeth's gtube. She said that her part is no problem but she is concerned about her being put to sleep. When we meet with the anesthesiologist team if they give us the ok her surgery will be done. She is scheduled to be admitted on April 25th for fluids & pre-medication. Please pray the insurance approves that. Her surgery is scheduled for the 26th. She will have to stay at least 2 days so that the stitches can be removed. Please pray for God's will to be done. We have put a lot of prayer into this. As she gets older she gets very tired while eating. We know the benefits of it but want to be sure that outweighs the risk.
> Michala is struggling with teenage years & increased seizures, strength & length. We are increasing her vigabatrin.
> About 4 months ago Marlee Anne starting having episodes at night where she would throw up. Sometimes she wakes up before & sometimes not. She is also having joint, muscle & stomach pain. About a month ago she started having severe headaches that come on quickly. We are trying to figure out what is going on with her. Still waiting on more test results. Please pray for direction & answers & complete healing for her. She is up & about doing her regular schedule. We try not to talk about it unless she brings it up & wants to.
> We know that no matter what, like always God has this. It's just hard for me to accept that our only healthy child may be sick.
> As long as Abe is taking the new medicine his stomach is not bleeding. We have to discuss with GI how long he can be on this medicine before something has to be done. Again not sure the risk of putting him to sleep is worth it or warranted.
> This kind of feels like a heavy email. Sorry for that. I will share that Chris Tomlin's How Great is Our God has been on my heart & lips lately. Also this morning Aunt Nay reminded me of Mandisa's Stronger. Thanks so much to each of you for continuing this journey with us, lifting us up, standing in the gap & joining us in prayer!

Sunday, March 11, 2012

I'm not home yet!

WOW! What powerful words!

We were purchasing one of Abe's seizure medications from Canada because it wasn't available in the US. Well now it's FDA approved & I was told today our wonderful (sarcasm) insurance is not going to cover it. Well I went to the pharmacy because this awesome pharmacist was being so helpful with it. (that part was just because I needed to get it off my chest & share why God took me out of the house tonight & was able to get my attention in a mighty way)

When we are all in the van together we usually don't listen to the radio but since I was alone tonight I did. This song came on. The chorus goes, All I know is I'm not home yet. This is not where I belong. Take this world and give me Jesus. This is not where I belong. The song is by Building 429 and it's called Where I Belong.

Mike & I often talk about not "fitting in" here. So many times I think it's because we are a different family. Family and friends go out to dinner, movies, & shopping. Couples go out together. Families get together. Families go to church or events. Often I feel the world goes on with their lives while we are just here.

As I listened to the words of that song God reminded me to be thankful for our differences. To be thankful that we don't "fit". The reason we don't fit is because we don't belong. We are here for a purpose. We are heading towards our home.

What an incredible peace to know this is not our home. Better things await. What a glorious day!


Monday, March 05, 2012

UGA Miracle Dance Marathon 2012

As I searched for a scripture that relates to what these incredible UGA students are doing I found Acts 20:35. In all things I gave you an example, that do laboring ye ought to help the weak, and to remember the words of the Lord Jesus, that he himself said, It is more blessed to give than to receive.

This morning in my inbox was a great devotion from my precious friend Courtney. The scripture was, Carry each other's burdens, and in this way you will fulfill the law of Christ. Galatians 6:2. So fitting.

Back in the summer I received a phone call from a precious UGA student named Calli. We had the most wonderful conversation. She wanted to know if 3 of our children would be miracle kids for UGA miracle. Apparently our sweet friend Kylie had given them our name. Well absolutely. If Kylie was part of it & thought we should be we were there.

The first event we attended was at the zoo in Athens. I know many of you are going there is a zoo in Athens. Well yes there is. Very nice one too. It's called Bear Hollow Zoo & it's filled with Georgia'a native wildlife. We saw several animals that had been rescued & were there for rehabilitation.

Soon we met our family partners Sara Bess, Emily & Kayla. What beautiful girls & precious spirits about them.

The big event was this weekend at UGA. It's called Dance Marathon. There are about 1,000 UGA students giving of their time & love for our children & all the miracle kids.

This was our first time so we weren't sure what to expect. Sara Bess was waiting for us when we got there. There was a family corner where we got settled & waited for time for it to start. Soon Emily & Kayla joined us.

Opening ceremonies included all the families walking in with their teams. Throughout the 24 hours the colors have different competitions. We were the silver team. When we walked through the 1,000 students minus family partners were lined up on either side for us to walk through. You know how the players run through with the cheerleaders lined up on either side. Well it was like that. The students were our cheerleaders. Well Mary Elizabeth was in her element. All eyes on her with lots of cheering & praise. She loved it. I have to say even daddy who doesn't like the limelight was so proud to be pushing his angel. Michala didn't care who all the commotion & excitement was for she just loved it. She saw 1,000 students that would clap with & for her for 24 hours. Marlee Anne thought it was cool & Abe was just not too sure.

Soon it was time to eat. Really?! We ate every 4 hours. I am telling you they thought of everything. Ok maybe not "real" coffee but besides that everything!

Throughout the day & night families shared their stories. Oh wait I didn't tell ya'll. UGA Miracle does all this For The Kids (FTK). They raise money that goes to all 3 Children's Healthcare of Atlanta locations to help the kids. Well we get to hear other families stories, meet new families & hang out with families that walk through this journey with us.

Some how, not sure when it happened Mary Elizabeth found a UGA student to fall in love with. She had this look in her eye, smile & giggle each time he walked up. His name is Michael. He is this big tall guy that towers over Mary Elizabeth is her wheelchair & she loved it!!! She recognizes those who have a special heart & she recognized him right off. I didn't even get a picture of the two of them together. Oh well next time!

Mike had to come back home midday for Celebrate Our Home. Our family partners were so great & such a huge help during this time. I even got to walk to Jittery Joes with my dear friend Rachel during this time.

It was time to eat yet again. Sandwiches from Schlotzsky's. Yum! I have to verify but I think all these places donated food. Our first meal was provided by Chick-fil-a.

Mike was back with guitar & drum in hand. Marlee Anne was going to play the guitar while Michala was playing the drum. Afterwards we were scheduled to speak. Marlee Anne got up on stage & froze but Michala had no problem rocking it out. She loved the attention.

As I began to speak I wanted to thank the students but the words didn't seem to flow. Over 100 students pledged to stand for 24 hours. 24 hours without sitting down. When I heard that Trey was doing that I was blown away. Then I found out most if not all executive board was doing that. Then more & more I was seeing the 2012 race numbers for those standing 24 hours for our children that cannot stand. Our 3 children that use wheelchairs are not using them because they get tired but because their legs are not strong enough for them to stand. Michala could if she had a prosthesis but because her seizures are so hard it would be very dangerous. So these students standing for 24 hours for kids that cannot stand had a huge impact on me. It meant more to me than they will ever know.

There was something going on the entire 24 hours. I missed some of the families sharing their story. The ones I heard were so touching & life changes even the stories I already heard before in the past from the families we are friends with.

At 6 the family partners stayed with the children while the parents went out. Abe was having a tough time so we hung around. Mike went & got sushi for he, Marlee Anne & our family partners but I chose Longhorns which was right beside there. Our longtime dear friends Shirley, Kaitlin & Ashlen who live in Athens came over to spend some time with us. They brought Gigi's cupcakes. I think they were for Michala but I limited her to one so we could have the rest for our 2:00 AM treat. Man they were good!

After getting the meds done & everyone ready for bed we headed to the hotel. Again something I need to check on but I think the hotel rooms were donated by local hotels. We were staying at the Country Inn & Suites. We got everyone settled & Shirley took me back to the college. After a stop for a "real" coffee to help me through the night.

Shirley & Ashlen stayed with us to watch the hypnotist. WOW! That was amazing & hilarious beyond words. I was so sore from laughing so hard.

There were times when I questioned whether Marlee Anne & I were going to make it the whole 24 hours. It never failed one of students would come up to help us get through. Maybe a snack, a real cup of coffee or a game of spoons. Every time I saw one of the students that had pledged to stand for 24 hours it helped encourage me in a big way.

Our friends came back to speak at 5 so that helped to get us through those hours. Plus an awesome dad went on a Starbucks run.

Throughout the 24 hours the students were learning a dance. They performed it for us at the end. Wow! It was amazing. Michala absolutely loved it!

At the end was the circle of hope. The students had hospital bands on their arms with the names of the Miracle Kids & children who were hospitalized right now at CHOA. The students made a huge & I mean huge circle around the room. The families were in the middle of the circle with scissors. We were to cut off the hospital bands. As I started cutting off the bands the tears started to flow. I cannot put into words very easily what an impact that had on me. I cannot tell you how many hospital bands I have cut off my children's arms. Each one meaning different things, different hospital visits, different results but with the same meaning. When the hospital band was cut off it meant something was over, something was accomplished. Hopefully with great results. Each band I cut off I prayed for that student that was wearing it. I prayed their lives had been changed, blessed & enriched by what went on this weekend & by what they had accomplished. I prayed for the child or children listed on that band. It was overwhelming in a big way for me & our family.

This year UGA Miracle raised $312,000 for Children's Healthcare of Atlanta. Over the past 17 years they have raised 3 million dollars. Wow! That's amazing. This was done by college students. Not that I doubt they could. It's just that to raise that much money & orchestrate such a huge event like Dance Marathon takes so much time. So much time they could be using to do college stuff. They could be thinking of themselves but instead they are selflessly thinking of & working hard For The Kids. Our kids! To say I am blown away by it & them is putting it mildly. They are awesome! UGA Miracle ya'll ROCK! Many of ya'll took time to meet our children, spend time with them & talk to them. Even though you may not have gotten a verbal response from them you hopefully knew what your time & attention meant to them. The pictures show it especially Abe's look on his face with all the attention he got from the pretty college girls.

As we were leaving some of the students confirmed that you could wear pjs to class so I think Mary Elizabeth is so there if she were going to college. That means I can buy her some DAWGS clothes! Woohoo!!!

Thanks UGA Miracle for all you do!!!


Thursday, March 01, 2012


Many of you have asked why we don't do Relay anymore. I don't want to start a debate but I do want to share & I think this sums it up. I think the biggest thing is to know your causes & what happens to the money when you donate & raise money for a cause. Thanks so much to all of you that supported us so greatly with this over the years.