The fourth child of Frank and Janet, Avery Micah Lynne Friedmann, was born on December 17, 1997, with the odds stacked against her. She was diagnosed with a condition called arthrogryposis, which came with numerous complications. According to Frank: "The first few months of Avery's life resembled a roller coaster--up and down and out of control!" This little fighter persevered, and though there have been bumps in the road, today she is a thriving 12-year-old seventh grader.
Thank you all for praying for this little darling of ours. She is in a GREAT place right now. She is surgery free for two years. She is also pneumonia free for two years. This has been accompished through the help of our pulmonologist, who diagnosed Avery with pulmonary lung disease...put simply, she is a weak breather. So he put her on two different breathing machines. One blows into her lungs when she takes a breath to expand her lungs. The other is a vibrating vest to break up any congestion which builds up in her lungs and leads to pneumonia We are very thankful for this man. He has proven to be a real blessing to our family.
Avery recently retrurned from a visit to the specialists Texas Scottish Rite. Her feet are holding, not regressing which is good news. Her hands however, have regressed 15 - 20% since her corrective surgery two years ago. They are watching her and she is back in her night splints to try and control the regression. Her foot orthotist contiues to work wonders. His name is Don Virostek. He has been able to put her in special Ankle Foot Orthotics which have allowed this little "diva" to fulfill her dream and wear boots!!! She is an inspiration to lots of people and a joy to be around. The other children continue to amaze us with the love, care and patience they provide as our lives are very different since this little one showed up. I am proud of them all, especially Janet who works so very hard for all our babies. We will revel in this quiet spell that we are enjoying. Thanks for stopping by and continuing to pray as you do.
After 10 years of believing that Avery has "Arthrogryposis Multiplex Congenital Distal Type II E," a recent biopsy suggests that she does not have that disease, but a "muscle myopathy of unknown classification." Put simply, that means we don't know what she has.
We are going to Texas Children's to see a specialist to help determine what she might have and what course of treatment to pursue. Her present doctors have cancelled her surgeries pending further diagnosis.
In anticipation of this, we had a permanent IV access port put in. The disease has caused her to have very small veins, and it often takes over an hour to find one. We do not want her to be a pin cushion, and since there could be an emergency sometime when IV access would be needed quickly, this is a good decision. The normal 30-minute procedure took over three hours, as she does not do anything by the book. Further, she aspirated into the mask during surgery, requiring hospitalization to guard against pneumonia, which she is prone to.
Her hand surgery, which was done in February of this year, seems to have been a big success. She lost some mobility and is having to adapt in new ways, but her hand is very straight, and she is asking when we can fix the other hand. She is such an amazing child. The other day I was taking her to school, and she was singing in the background. When I asked her what she was doing, she told me, "I am just happy all the time." What an outlook on life this child has...I wish I had the same child-like spirit!
What has been on the horizon is now here. We were preparing last night to go to Dallas for Avery's surgery on February 22. She finally broke down and cried. She told me that she wants her hands fixed, but doesn't want to go through another surgery.
This little girl fills my heart, but she breaks it too. She is so brave, and I am so very proud of her. Also please pray for Ben, who will man the house while still on crutches; and for Morgan, who will once again stay with dear friends and continue her school work; and for Les-Leigh, who is far from home. These children have borne Avery's burden for many years, and I am so proud of their courage and faith.
Ben recently blew out his ankle and had to have surgery. It was a painful time for him. He is doing well and recovering nicely. He is such a wonderful young man and a joy to share life with. During this time, we were once again ministered to by Avery. Janet approached Avery about her upcoming surgery in February, inquiring of her, "Avery, Have you seen the pain that Ben is experiencing with his surgery? Does that make you afraid about your surgery? What is going on inside you, little girl?"
Avery quickly responded, "Mom, my surgery is not for another month!" What an amazing gift from our Father. She has the ability to compartmentalize her life. In essence, she was telling us she would deal with it when it got here, but for now she was going to live life. I think someone once said that we were not to worry about tomorrow, because each day was its own. We are so glad that she is able to put aside what is on the horizon to enjoy today. I hope we all learn to do likewise.