WOW...

Saturday was the Emeries Smiles 5K run and all I can say is that God was definitly a part of it. The weather was beautiful, low 70's. We had a great turn-out and close to 100 people that showed up that had not pre-registered. Again wow! We do still have donations coming in each day so hopefully next week I'll be able to let you know how much was raised. There will also be an article in one of the Hendersonville Newspapers next week I believe.

Again we can't say how thankful we are for each and everyone of you. You support us day in and day out through phone calls, letters, emails, and prayer. Our only hope is that through sharing Emerie's story we will not only hopefully be able to find a cure one day but that others will see God thru Emerie and her progress.

Jordan

Quick Prayer Request...

We found out that Vanderbilt is unwilling to work with Cinncinnati Children's Hospital and/or Lexington to do Emerie's testing. This is really sad in the fact that we had no trouble or at least not a lot with Emerie when she would go in for things until Lexington now she's terrified. She doesn't want her therapist to touch or work with her and God forbid a nurse or doctor come near her. Vanderbilt nurses and their practices are awesome if you've never experienced it before. They numb the areas they are giving shots or IV's in. They give them "goofy" medicine to keep them calm which you underestimate the power of until you somewhere that is not a children's hospital like Lexington which is what set this all off. Emerie's no longer a baby and understands it all and doesn't like it. Please pray that something will hit a nerve or touch the heart of someone at Vanderbilt and they will reconsider. May God allow them to put aside the fact that it's not their thoughts or opinions that matter but the health of a 24 month old little girl that needs all the help she can get.

Also if you ordered bracelets they went in the mail yesterday!

Thanks and love,

Jordan

The Rescheduled 5k is quickly approaching...

The walk originally scheduled for April is only 2 1/2 weeks away. It is now Saturday, July 18th. If you want to pre-register and get a t-shirt please do it quickly because we are running out of this shirts. We will also have the bracelets for sale that day or you can purchase them through this site or by emailing me at dolcedesignsbyjandj@yahoo.com. I'm expecting a shipment in tomorrow so they will be in the mail on Friday to those who have already purchased one.

Thanks for your support!

Jordan

Results from UKMC, Diagnosis

Hi everyone! Sorry I didn't get back to you after our last hospital stay at UK Medical Center. In the beginning we thought the trip was a disaster, because when we got to the hospital everything we were supposed to have done was not set up right. They are very disorganized. At one point they wanted to send us home. We told them we drove 4 hours and we were not going home. I guess God took over at that point because things started going in a better direction. She was stuck with needles over 20 times and they are not like Vanderbilt. They don't give silly juice to help them not remember the trauma or use gas. She ended up with 2 IV's one in her leg and one in her arm and she was not happy. They told us it would be 2-3 weeks before they got the results of over 100 metabolic and genetic test. Me and Emerie went back to Lexington yesterday for the results. I'm not sure what I think about the results or if I can even explain them but I will give it a try. They are pretty sure Emerie has a mitchondrial disorder. We all have mitochondria in every cell in our body and they are responsible for processing oxygen and producing energy to run the major organs in our bodies. The mitochondria in Emerie's cells are defective. Her mitochondria are unable to completely burn food and oxygen in order to generate energy. The process of converting food and oxygen into energy requires hundreds of chemical reactions, and when one or more components of these chemical reactions does not run perfectly, there is a energy crisis in the body and the cells cannot function normally. As a result, the incompletely burned food accumulates as poison inside the body and starts damaging major organs. They know Emerie's muscular system, brain, and skeletal system are involved. They are now very concerned with her heart. They told us she needs to see a cardiologist as soon as possible and she will need scans every few months to make sure her heart is still pumping correctly and check the rhythm of her heart. The mitochondrial disease can affect the cells of her brain, nerves(including nerves to the stomach and intestines} muscles,kidneys,heart,liver,eyes,ears, or pancreas. In some patients only one organ is affected, but we already know she has more organs involved. The symptoms she can have include poor growth,loss of muscle coordination, muscle weakness,visual and hearing problems,developmental delays,learning disabilities, mental retardation,heart,liver,or kidney disease,gastrointestinal disorders, respiratory disorders,diabetes,increased risk of infection,neurological problems, seizures,thyroid dysfunction ans dementia. She could have only some of these or all in her lifetime. Just because some of these have not shown up yet does not mean they will not show up next week or in 2 years. They have to do many more tests to try and best diagnosis how she will be affected. They will have to do skin and muscle biopsies. They told us that the diagnosis of this disease can be invasive, expensive, time consuming and labor intensive. There are no cures for mitochondrial diseases, but treatment can help reduce symptoms or delay the progression of the disease. Certain vitamin and enzyme therapies along with occupational and physical therapy can be helpful in some patients. They sometimes also try a medicine given to Parkinson Disease patients to help with the symptoms of the disease. They told us depending on how severe the mitochondrial disorder is, the illness can range in severity from mild to fatal. They told us there is no way to predict the course of the disease. They gave me so much information the I was in information overload. They told me to go on the internet and learn everything I could about the disorder. We have prayed for so long for a diagnosis and now I'm overwhelmed and scared to death of Emerie's future. All the medications used to treat the symptoms have pages of side affects especially for a child her age. But in all this God has once again showed me that HE IS IN CONTROL! The neurolgist told me Emerie needed to see a medical geneticist that specailizes in mitochondrial disorders. I was thinking in my head where in the world will we have to go to see this doctor? The doctor then told me that there was one two floors down from him. So he sent us to the nurse so she could make us an appointment with this doctor. The nurses first comment was did the doctor tell you there is a 1 year waiting list for this doctor. I told her we had already been waiting almost two years and Emerie needs to see her now especially when they are concerned with her heart. She told me to have a seat and she would see what she could do. She came back about 45 minutes later and said the soonest appointment they could give me was July 2010, but she was still on the line with the nurse . My heart literally felt like it was going to fall out of my chest. I couldn't imagine waiting another year and was scared of what could happen to Emerie while we waited. In a matter of minutes the nurse came out and she had tears in her eyes. She said you are not going to believe what just happened. She said God has truly blessed you and Emerie today. While she was on the phone someone called in and cancelled their appointment for June 16. She said this was a gift from God because people don't cancel appointments with this geneticist because everyone that sees them is a serious case. She said she has been working at UK Medical Center for over 20 years and she has never been able to get someone in to see this geneticist in less than a year. By this time there was a waiting room full of people and they all had been hearing what me and the nurse had been talking about because we were in such a small room. They all had met Emerie at this point because she walks up to everyone and says hello. They all got to see God at work . There were other patients with tears in their eyes at this point. So once again Emerie and I got to indirectly share what God has done for us. One patient told me that she had chills all over her body. I hope that this experience gave some of the other patients more assurance that God takes care of us all and he is always in control. We leave for Cincinnati Childrens Hosptial tommorrow night and please pray that they can confirm this diagnosis. A part of me hopes even though I have prayed for a diagnosis for so long that the metabolic tests were wrong. This is much more serious than Jeff and I ever imagined, but if it is confirmed we know we will only get through with God's grace and compassion. We will go to the geneticist next Tuesday in Lexington. The last few weeks it seems like I hardly unpack our bags and it is time to travel to another doctor again. Our pedaitrician told us that there is not a doctor at Vanderbilt that specializes in this disorder, but she is going to find us a heart doctor at Vanderbilt,because her heart doctor needs to be close to home. Please keep us in your prayers as we make all these trips. You can go to www.mitochondrialdisorders.com if you want to read more about this disease. Thanks again for all your uplifting messages and prayers. I will try to do better with my updates. Love, Tina

Emerie's Story

When Emerie was born she could not bend and when we tried to burp her or bend her she would bow out backwards. Noone seemed to think anything was wrong with Emerie until we took pictures to the doctor and they couldn't beleive the way Emerie slept. At that point they knew something was wrong they just had no idea what it was. She had GI's , swallow studies, and any other test imaginable. At 4 months old they put her to sleep for catscans and a MRI. They couldn't figure anything out. At 4 1/2 months they put her to sleep again and 4 different doctors did separate biopsies and endoscopic surgery. At this point Emerie arched and screamed 24 hours a day. They discovered she had relflux and her trachea had a bulging aorta. They also figured out that the arching was too severe to be blamed on reflux. While in surgery the ENT noticed Emerie's skull was severely flattened on one side. Her eyes were also different sizes which we had been noticing for a few weeks. He recommended that we see a craniofacial surgeon. Emerie had to be put to sleep again. Emerie had to then have a 3D cat scan. They discovered her skull was severely misshaped. They said her brain was actually bulging through her skull and deforming the skull to make room to grow. They told us that Emerie needed a cranial helmet in the next 2 weeks or Emerie would have brain damage. The helmet cost $3000.00 and insurance would not pay for any of it. Thanks to many prayers and giving people we received the money to buy the helmet. Little did those people know that this little pink helmet would become a ministry. We have been able to share Jesus with so many people because of the helmet. It has opened many doors and conversations. Emerie had to go in and have a cast put on her head. It stayed on for an hour and she screamed the whole time, because casting material becomes very hot after it has been on a while. We went back 10 days later and Emeries helmet was ready. She loved her little pink helment from the moment we first put it on her head. Two days later we went to the Shriners Hospital in Lexington,KY. What a wonderful place. They told us that they thought Emerie had an abnormality between her C1 and C2 vertebrae. They did not know if Emerie would ever turn over or learn to walk. She proved them wrong. She didn't learn to turn over until she was 9 months old though. She learned to sit shortly after that. Now she is trying to walk. We went to see more doctors in the next few months. Emerie started physical therapy and her teacher comes once a week (Ms. Nicole) and works with her. She was developmentally behind and her adaptive skills were behind. We went back to Lexington and they were keeping up with her progress. Then in July Emerie was acting strange and sleeping 21-22 hours a day. She was put to sleep again. She had another 3D cat scan and they discovered her skull was underdeveloped on the left side. It is still not clear what is going on with her skull base, but it appears to be twisted or torked to the right. This was not good news. They were also concerned that Emerie may be having seizures. We then saw more neurologist and they wanted us to try botox. Which is very dangerous and they had not tried it in a child as young as Emerie. We were torn and didn't know what to do at that point. We then went to see more orthopedic surgeons and they thought the muscle needed to be cut in Emeries neck. They sent us on to another surgeon and he told us that botox absolutely would not work, because botox does not work on scar tissue. He is quite sure Emeries main muscle in her neck has alot of scar tissue and possibly it is all scar tissue. He told us Emerie definitely needed surgery right away. we just didn't know it would be this quick, because after 14 months of trying to find out what was wrong with our sweet baby we finally were getting somewhere. He also told us that he still wasn't sure if there was an abnormality between her C1 and C2 vertebrae. He didn't want to even talk about it at this point because it was too dangerous and bad to discuss. We have to start with this surgery no matter what so that is where we are at. This is only a sampling of what our family and especially Emerie has been through in the past 14 months. It would take a book to tell everything. We have faced many hardships and financially it has been extremely hard. We have more doctor bills than I care to think about. Emerie has seen over 100 doctors and residents and interns since we began this journey. God has always been faithful to our family and carried us through. God has used many people to support us , pray for us, and love us through this journey. Somedays I'm blown away by what God does through Emerie. She is such a precious little angel, I feeled blessed that God chose me to be her mommy. Our whole families faith has grown in the last 14 months. It is amazing how a little girl with a pink helmet can touch so many peoples lives with her sweet spirit and her "Emeries smiles" We love you Emerie and thank you for always bringing sunshine to our lives each day. She will have an awesome testimony to share with people one day. Actually she already does and she can't even talk yet. When we go to doctors appointments and for hospital visits or tests, and no matter what they do to her she looks up and waves like Miss America and says "HI" and flashes one of those "Emeries smiles".

Welcome

Welcome to Emerie's Smiles. This website was set-up so that family and friends could not only follow Emerie thru her Carepage but through this site as well. We will also be selling pink and green rubber bracelets to help go towards her medical expenses.