Memorial Day

It is always fun to have a day with Neil home out of the normal. Before heading to Marty's for swimming we visited Grandpa grave sight and a friend of ours that had passed away a couple years back.

Train Park

It is always fun having Whit in town! One day had a little outing to the Train Park. It was perfect for Christopher a& Sydney. There was a little train we rode and a merry-go-round. Christopher was not too sure about the marry-go-round. Sydney on the other hand LOVED it!!

Lets Play Ball

Carter & Dallin each year have played ball together. It is great because it is much funner to watch with a crowd we know. Carter did great a catcher, and took the opportunity to slide into home after his hit just for the camera. That's my boy!

This particular game we recruited the clan. Whit and Christopher were in town so even more cheerleaders.

Dad & Mom even came for there anniversary. How romantic!

When the kids started crawling all over we knew it was time to call it game. It was a good season!

Happy Birthday Sydney

Sydney is 4! Such a big girl! We love her and loved having her part of the family the last 4 years. She is a joy in our family, we are so lucky to have her!

We had a mellow birthday this year, next year we'll go a bit bigger. She is lucky and gets to share her birthday with Auburn & Allison. They turned 3!

Most kids have cake, but this year Sydney enjoyed her asparagus and butter!

Our New Little Girl
1 Years Old

2 Years Old

3 Years Old
4 years old

Good Bye Ronald

Sydney loved Ronald. She was a bit confused, she thought he was real!

She kept waving and asking for kisses expecting something in return.

I couldn't get her away, she wanted her wave or hello in return. It was so funny!
She finally just blew him lots of kisses as she walked away!
Time to head home!

More Tests

This was a new test for us. RMR Resting Metabolic Rate Test I am pretty sure it is called. This was canceled due to her fever, but luckily we were able to get it right before we took off. It is a bit of a miserable test. It tests how her body metabolizes. So she has to sit in a 'resting' state with this bubble and shower curtain thing over her for 20 minutes. It was not quite resting, she fought and cried the entire time. She was so hot and sweaty, but she did it. We were both so happy when this was done!

The EKG followed, she thought it was great fun to stick the extra tabs on me like stickers. What ever made her happy at this point! The tests were finally done!

Nate & Brit

I have some wonderful cousins that live in Atalnta. It was such a treat to go with them to lunch and later to a school orchestra concert. It was so nice to see them and spend time with them! After lunch one day Nate drove us around and showed us the city and some beautiful houses. It was so great, and so pretty!

Ronald Mc Donald House

At the Ronald McDonald House volunteers come every night and make dinner for those in the house. There were about 10 families there, most of them had been there for a month or two and some still had a couple months left. Most of the kids there had been in a car accident and had a brain injury, but were doing great. They would all load up in the van in the morning and go to the hospital for rehab therapy and come back that night. We were the only girl in the house, so when The Blue Nights came one night and grilled a wonderful meal and had all their bikes the boys that were all around 8-12 where loving it! These volunteers were so good and they loved it!!! Sydney had just had her biopsy that morning so she wasn't too chipper, but she liked this bike that had the flowers on it. They were real nice and let the kids get in the car. One little boy was having a blast on the intercome and we had to laught when a couple minutes later a patrol car came to findout what the yelling was all about.

This group sat and visited as they made dinner, they were all police officers and some of their wifes. There was a big group of them. It was such a treat to how that that night!

Tests

Our first day of tests were the more invasive ones. She had a muscle biopsy, skin biopsy, spinal tap, and blood & urine work. She was a trooper, anesthesia hasn't been too rough on her in the past. When she had her last muscle biopsy in October she was up and walking the next day. This time she really struggled to even stand a couple days later. I later learned that before the part of her quad that was taken was on the side, and this time it was in the front of the quad, which is a more frequently used muscle. Now we know, hopefully that was our last time to do it! She is amazing!

Atlanta Trip Step 1

The trip was broken into chunk mentally of things needed to accomplish. Getting through security, getting on the plain, getting to Atlanta, getting our baggage, getting our rental car, and finally ending up at the Ronald Mc Donald house. After a night of Sydney being sick on both ends the decision to go was much harder to make, but she didn't have a fever. But we decided to go for it and just pray like crazy things go well. Her being sick made things a bit tricky, but the flight over couldn't have gone better. She actually fell asleep for about an hour of the ride, and she held everything in. I didn't feed her, just a very slow drip of water in hopes of not needing an IV when we got there. Us Airways has to have the least amount of flying space I have ever experienced! She had to sit criss cross or she would hit her feet, but the plane got us there safely!

I have to say that our double stroller saved me. There was no humanly possible way for me to carry her and everything, we got quite a few funny glances, but it worked! It is great in the Atlanta airport they have a tram/train thing that you can catch and it takes your were you need to go. BUT I didn't know that, I saw it, but I was too nervous to get on it in fear of ending up in some random place. So we did a very long trek through the airport. But on the way home we got on it and it was BEAUTIFUL!I have a new love for my friends GPS system. I can't explain how beautiful the sound "re-calculating" was when I knew I had just made a wrong turn, or when I missed the exit or when I was in a part of town that looked like a scary movie. She always got me back on track, I bet I could turn that into a church talk, but not today. I tried to name her and the only thing that fit is Synergy (from the tv show Jem growing up). Sandra uses that for her car GPS. It just fits.

Why Atlanta?

Back in Dec. Sydneys Dr.s Started talking about a Dr. in Atlanta that they were sending her extra muscle to and other things so he could look at it. In March after talking to Sydney's Neurologists it was decided the next step was to go see Dr. Shoffner in Atlanta. Our Doctors had done all they knew what to do, they were at the end of their ideas. Dr. Shoffner is a specialist in Mitochondria Diseases. I am still so limited on what we are talking about, but in a nut shell I know the Mitochondria is the energy source for your body. It helps produce energy and the brake down of the energy. If you think back to science in school we were taught about the cell, in the center is the nucleus, and then around the nucleus is the mitochondria. That is what they feel may be causing things to act up.

With the wonderful love and support and prayers by many Sydney and I were able to go back and see Dr. Shoffner for a week. The trip was a whirl wind, but in the end we were able to get all the tests done. When I met with Dr. Shoffner there wasn't a lot we talked about, because there are so many different Mitochondrial disorders that are all so specific to the patient. He encouraged me not to research things until we narrow things down. Until the tests are done, and the results are back we really don't know anything yet. But he seemed to know what he was talking about, and I know we are in good hands. As I talked to a couple Mito parents since being home I am even more appreciative that we are working with him.

Test results may start coming the end of July. I am going back in August to meet with Dr. Shoffner and talk about results. From what I understand most Mitochondrial disorders aren't something you cure, but by knowing what the path may be and how to treat things that come is what we are hoping to find. We appreciate more than the heart can express those that are going through this adventure with us!!!