Friday, April 25, 2008

picture of ella

Ella is a Miracle

Miracles are all around us. Those close to me know My niece Ella was diagnosed with a rare condition called aicardi syndrome. Ella was born on mothers day of my sister-in-law, Erin. Erin and I had planned to get pregnant together. For years we talked about how wonderful it will be to go through a pregnancy together. This was Erin’s first baby and I expected to be there from beginning to end.. Because my pregnancy was so intense I missed a lot of her pregnancy and birth. The day Ella was born my last two babies came home. It was a happy day for us all. As I was trying to grasp having 5 new babies Erin was figuring out motherhood. I missed seeing her and talking with her. Every now and then she would stop my with Ella and we would admire all the kids together. 4 Months later our smiles turned into tears when Ella was diagnosed with Aicardi. For those that don know what this is it is a Moderate-to-severe global developmental delay and mental retardation are expected. Girls with Aicardi syndrome often develop seizures prior to three months and most before one year of age. Ongoing medically refractory epilepsy with a variety of seizure types develops over time. Costovertebral defects are common and can lead to marked scoliosis in up to one third of affected individuals. Other features include characteristic facial features, gastrointestinal difficulties, small hands, vascular malformations and pigmentary lesions of the skin, increased incidence of tumors, lower growth rate after ages seven to nine years, and precocious or delayed puberty. Survival is highly variable, with the mean age of death about 8.3 years and the median age of death about 18.5 years.
Ella’s seizers were happening more and more sometimes up to 10 times a day. We were all heart broken. Then Erin discovered a treatment for patients with seizers. It is a diet that made the body think it was starving.It is a high fat diet and very monitored. This diet dates back to biblical days. Ella’s condition began to change and she started sitting up, crawling and pulling herself up. The seizers slowed and then stopped. We were all still afraid of getting to our hopes up.
Last week Ella went into the doctor and Erin was told Ella was misdiagnosed. She does have seizers however, the doctors now feel they may never come back. And if they do she will have mild epilepsy.
God is at work in this family. My sisters baby being cured of cancer. And then Ella and the quints.
I just want to let both of my sisters to know they are amazing for what they have been through and I am so very proud of them. our entire family is thankful for gods grace. I love you all!!
Auntie Courtnee

Tuesday, April 15, 2008

Montel Williams Show

HI we were on the Montel Williams Show this morning they ran a rerun. The kids have changed so much since then.
We had a bad day yesterday. Mike and I got a BIG surprise. Mike went to work and they laid everyone off in his company. I walked around with a big lump in my throut. It is sad but I believe there is something better in store. Mabey medical ins. or retirement will be offered. If anyone out there has a lead for a Journeymen Electrician let me know.
Lots of Love,

Sunday, April 6, 2008

pictures of Molly

Hi everyone I just got these pictures of Molly and I want to share them with you all. You can see she is happy and healthy. Her cancer is gone and I am looking forward to her living in Washington soon.
The kids and I went to church this morning. People are always amazed at how healthy they are. I have to admit I always smile when they are saying "you could never tell they were preemies." My little chubbies love to eat. Mike has worked 60 hours at his regular job and then another 8 today at the house. We know it won't always be this hard. The house is coming along. Our framing inspection passed. Next is sheet rock. The sweet Judkin family has offered their services. I love the Judkins, not only are they helping on the house their family brings us dinner once a month. It is not just any dinner it is a huge home baked feast. Homemade rolls and jam everything down to the desert.
Have a great week

Thursday, April 3, 2008

Kathi Girtson

Hi everyone I am writing so you can pray once again. Kathi Goertzen has covered our story from day one. She is one of the kindest and most compassionate people I have ever meant. Last week she told me her brain tumor was back for the third time and today she went public. You can watch her story on the channel 4 news or she is asking for only prayers. When I was in the hospital having the babies Kathi was going through chemo. she was scared for her life and I was scared for my children's lives. What you saw on TV was a deep love and compassion for one another. when I was lonely laying in that hospital bed she would call to see how I was doing. Her voice would make me smile and her up lifting words would get me through another day. She is having a 3 hour surgery today to remove part of the tumor. since the tumor is so close to the brain stem if the take it all she could loose her speech or worse. pray for this tumor to stop growing. you can leave her a message 206-404-5284 she has given out this phone number to listen to all the prayers and kind words you all have to say.