I would just like to offer my most sincere thanks to all of you who have visited our site, kept us in your prayers, and continue to encourage our family. It has indeed been far too long since I last updated our post, and that has been very inconsiderate of me. This journey has not been an easy one, but God has been faithful and so we stay the course. Emily is now three and a half years old and looks just like her momma, Fatherhood certainly has its challenges and unfortunately lends itself to on the job training. Emily however is doing amazing and attends Academy Pre school at our church, FBC Needville. Emily is a funny, sarcastic, intelligent, joyful, princess, who loves corn dogs and donut holes. Emily loves playing with our dogs and going for rides on our four wheeler. Rosie is still at home recovering and being loved on by family and friends. I'm sorry to report that there hasn't been much improvement with her current state of health. After about two and a half years we have decided to cease hyperbaric oxygen therapy and just give her time to recover. After a couple of years I had the newness of our situation reopened to me spawning this post after recently doing an interview with the Houston Chronicle in conjunction with Baylor Medicine and The AFE Foundation. The article will be informing us that there will be a new research done to explore AFE, the medical malady from which my wife was injured, and to inform families and AFE survivors that there is a new AFE registry that can help those efforts if we can get awareness out and AFE survivors involved. I must admit I have been on the sidelines as far as AFE contributions and it took me a while before I decided to commit and do the article, but now I am glad I did. After speaking with the founder of AFE Foundation, Miranda Klaussen, I realized that all of the doubt, lonliness, struggle, that I had battled alone for so long was done out of foolishness, pride, and ignorance. There is an AFE Survivors Community out there who doubt, who struggle, who are challenged, but they do it together.
9 Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up.11 Also, if two lie down together, they will keep warm.But how can one keep warm alone?12 Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken.
I myself am doing better each day, I am very grateful for my mothernlaw who has made our life easier through all of her selfless help and for my little brother David who does more than his fare share of chores around the house. Once again I thank all of you with the love of a thousand hearts and will try to have a better track record of posting updates and photos. I will post some of Emily soon.
Because He is Risen,
16 Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. 17 For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, 18 while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal. II Corinthians 4:16-18
Last Sunday I spoke for an hour on the phone with Dr. Paul Harch. We have come to the agreement that for now we will visit his offices in Mariscola, Louisianna (roughly 7 hours away and roughly 8 miles from New Orleans) on May 3 to May 5. On May 3 we will have an in depth consultation with Dr. Harch. On the 4th, that Wed. we will get a SPECT scan and then on the 5th, that Thurs. we will have one hour of hyperbaric oxygen therapy (HBOT) and then get one more SPECT scan. The goal will be to compare the two scans to determine wether or not the HBOT has proven to be effective for my wife. It may take a week for the concrete results to come in so we will be heading home that Friday. If the results are encouraging based on last weeks conversation Dr. Harch has recommended we lease a portable HBO chamber for a few months to monitor any improvements and get updated ct and eeg scans. The proposition of leasing as opposed to receiving therapy from his clinic is mainly due to cost, my wife may need 300 to 500 hours of therapy before the slightest improvements occur if any, but progress may come quicker as well. The cost of 1 hour of therapy is around 220 dollars and she may only be able to do 1 hour a day up to 5 a week, none the less the commercial steel chambers are turned down to the portable chambers atmospheric pressure so it will have the same result either way.
I just want to continue to thank those of you who are still concerned for my wife's wellbeing, she is still so very amazing. Emily is so gorgeous and playful and God remains good.
This time last year my family was blanketed in prayer from family, friends, church family, and complete strangers. I can't believe it has been a year, a whole year. The personality of my wife is sorely missed, but her presence is lovingly embraced. Rosie is continuing her physical therapies twice a day, her monthly check ups, and sees her specialty doctor at TIRR in the medical center bi-monthly. Rosie has come off of 4 of her medications since coming home. After a detailed analysis and testing the doctors and I agree it is both safest and comforting for Rosie to retain her trach. Our hope is as she improves we can revisit her need of having one. As far as her progression of recognition and communication it is still about the same. I have contacted Dr. Harch's offices in Louisianna and am still contemplating the potential benefits of hyperbaric oxygen therapy. Her vision has not been restored, but I promise you she could hear a pin drop. Rosie's hair is getting so long, it's almost shoulder length. Rosie still receives infrequent visits from friends, family, and co-workers and always seems to respond with wide eyed intent focus and big smiles. Now to the chicken that rules the roost, Emily. Fatherhood certainly has its challenges and despite popular myth having your inlaws next door certainly has its perks. Emily wakes me every morning as she stands up, leans over her crib, and lets out a big DA-DA. She started walking about two weeks ago and has just celebrated her 1st birthday. I will post new pics of Emily as she has changed so much over the year. I apologize for not updating sooner as I know many of you are still in prayer for Rosie and check this site. January 19, 2010 the night before delivery, I believed that God's sovereignty was incomparable, undeniable, and irrefutable, to put it simply He didn't make mistakes. One year later I stand by that belief, God is able to do all things, but He is not obligated to do anything. As you lift up prayers for Rosie, my prayer for you is that you consider the sovereignty of God, the work and love of Jesus Christ, He suffered so that Rosie's suffering would merely be temporal, ofcourse not hers alone but all who claim Him as Lord and Savior.
Well Rosie has been home under our care for a month now, I can't believe it; this whole experience is too surreal to grasp. I know I do not bear this travesty alone as Rosie meant so much to so many. Rosie is doing well and has been continuing her therapies at home with a weekly visit from a RN and a twice a week visit from a physical therapist. We are now just waiting for Rosie to heal mentally, she still wakes every morning with a beautiful smile which helps the waiting. I thank all of you for all you have done, tragedies occur every hour to people without such suppot and love, but God did not choose to allow us to experience this in that manner and because of your collective generosity we lack nothing.
Emily will be 6 months old on the 20th, she is such a good baby, she doesn't cry unless she is hungry or needs a change, she smiles all day, and is just so beautiful.
Always grateful Tony
Today Rosie's mom, my mom, and I are all training in the specific care for Rosie. This training includes feedings, diet, medications, and daily hygiene. Spending everyday with Rosie has seemingly prepared us for such care. Last Thursday Rosie had the tendons in her legs lengthened so that her feet will be able to freely move as normal. This was the final surgery Rosie needed before coming home and she will have casts for the next 4 to 5 weeks on her feet. Tuesday I will meet with vendors and therapists to select a proper wheel chair and hospital bed for Rosie's continued need and comfort. We are making all the final preparations at home for Rosie's arrival on Friday June 4th. Yesterday Rosie stood up for the first time in 4 and a half months, with complete assistance and only for a minute. Rosie is scheduled to have her trach for the next 6 weeks. Her baclofen pump is adjusted daily to find the right dose of medicine for maximum potential and comfort. After thorough examination Rosie's eye doctors have determined that due to the extent of brain damage incurred she is unable to see even though her eyes appear healthy. There is hope that as her brain heals with time, her vision may be restored.
Emily is continually loved and gorgeous. We will all be grateful when we have our family under one roof for the first time. Thank all of you for your continued prayer.