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Saturday, January 2, 2010

Welcome the New Year !!!!

I hope everyone has a safe New year eve, and wishes for a blessed New year of 2010. I know 2009 had it's ups and downs for me personally, but that is just life and has nothing to do with the year. GOD tells us in John 16:33, "Do not fear for while you are in this world you will have tribulations, but I have overcame the world" I know I tend to think this world is my home but it's not, it's temporary until Jesus comes to take home his people or takes me home first. I am still blessed beyond words with the trials that have came up. I've voiced finding out about Jeremy's spine progressing, rotating in was not what I wanted out of that physician appointment the day we seen Dr. Anagnost in July, but it is what it is and we are dealing with it.

I reflect back to when this decade started in 2000, the Y2K scare but Jeremy was only 4 months old, there was so much unknown, I didn't know if Jeremy was going to even survive so I welcomed the end of the world so we could go on to heaven and he wouldn't have to deal with what he was facing. I had interviewed our Pediatrician when I was pregnant, Dr. Scott Cyrus, wasn't sure I was going to use him but wanted him to see the baby while he was in the hospital. I knew shortly after Jeremy was born when he came into the room and told us he suspected Jeremy has hydrocephalus he was Jeremy's pediatrician. He's been been beyond totally awesome, when he said don't let Jeremy slip through the cracks, I will do what I can but you do what you can he meant it and has always lived up to that statement. 10 years later there is not a physican that knows Jeremy's total medical history like Dr. Scott Cyrus, he's been an awesome advocate for Jeremy, a sounding board for many things in Jeremy's life for me. 2000 brought on Jeremy undergoing major open heart surgery, although it was so traumatic & , he not only survived but thrived. We struggled getting him to eat more than 2 oz at a feeding, I'll never forget when he was able to start taking a bottle again, he gulped down 8 oz and our Pediatrician came in and I told him and he had the smile of the cat ate the canary, "I told them we needed to fix his heart" and thus he had, I heard the conversations. It also brought into our life our wonderful awesome, ENT, Dr. David Hall who placed tubes in J's ears before his heart surgery, we have followed with him every since, he has done all of J's tubes, removed tonsils and adenoids, done sleep study. I can't count the number of times Jeremy was scheduled for another procedure and Dr. Hall would come over check out Jeremy's ears, clean them out and if he needed tubes place them. 2002 brought on some new struggles, Jeremy's shunt quit working so we got a new shunt, battled for 4 weeks to find out the shunt was infected, Jeremy survived thrived. I fired our Neurosurgeon who in my eyes neglected Jeremy's care, didn't see the signs we had and told me I did too much research and talked to many parents who put fear in me. GOD once again brought me an awesome new one, Dr. John Marouk who has followed Jeremy these past years, for the 1st time a Neurosurgeon treated me like a mom who knew something about her son. During these years, Jeremy learned to roll over, crawl, use some fine motor skills, use a walker (although he hated it). We also during that hospital visit found out that Jeremy's scoliosis had progressed and it was time to do something not sit and watch it, I fired a Pediatric Orthopedic surgeon from OKC, and found the awesome, Dr. Anagnost who put Jeremy in a TSLO brace and followed him for the past 8 years. I'll never forget the day Jeremy started to wear it, I came home put him on the floor and he laid there and wouldn't do anything, I started to cry thinking we are going backwards. I emailed our Pedi and said what good is this brace, My Pedi, like he has said so many times before, "Give Jeremy time, he is hard headed and he will adjust" sure enough Jeremy started walking, started using his walker, graduated to the gait belt. We said good-bye to SoonerStart, our early intervention team in Oklahoma, they were awesome for the 1st 3 years of J's life, they became friends and we still stay in touch with them. They helped give Jeremy the start he needed to get where he is today. 2004 we said good bye to our wonderful awesome friends at Happy Hands and entered the Sapulpa Public school system, J started Kindergarten, he also started walking all by himself that year. We also had a tradegy in our lives and I lost my precious, awesome mother in law, who loved Jeremy so much and knew J's doctors and always prayed for Jeremy. We said good bye to Dr. Say and Dr. Moggandam, geneticist who had followed Jeremy since birth, Dr. Say retired and Dr. Moggandam moved to California. 2005 we finally got a genetic syndrome diagnose of FG syndrome, the awesome people I work with at OG&E put together without me knowing it and donated the money so I could take Jeremy to Salt Lake City, UT to meet Dr. John Optiz. We also got Dr. Michael Kayser, metabolic Geneticist in Tulsa who is just awesome, he follows Jeremy. We found out that Jeremy had a significant change on the L1cam gene which is off of the X q 28 chromonone, blood test showed I had the exact same significant change, but Greenwood clinic doesn't feel that it has anything to do with Jeremy's issues and a fluke it was caught, but we follow with Dr. Kayser to see what else may arise. Jeremy would advance through the grades at school, making slow/steady progress. We said good-bye to Dr. Anagnost and started the search to find the physician, facility to do Jeremy's spinal correction. Dr. A always told me that if and when Jeremy needed surgery he wouldn't be he one to do it, I knew that would happen. I appreciated what he did for us, his visits, treating me like a mom who knew my son, easy to visit with. I didn't plan on having to do this outside of OK. We started getting some behavior therapy through a place called ETL, and GOD blessed us with them in our lives and Matt Cobb our ETL teacher, whose family has became dear people in my life.

I started out the decade, if you put me in front of a group of people to speak I would have done it but would have worried to the point I would be so nervous thinking about it to the point I sometimes have to remind myself it's ok to not always say something, I often times speak before thinking. I've changed as a person, employee, Christian, daughter, sister, friend, I started out 2000 as an Engineering Clerk, Daily Ops Clerk and advocated and promoted to a Scheduler, I had 2 bosses retire during that time, in March I celebrate my 19 years at OGE. I started out being a mentor for SPAN, special parent network, wanting to help other families with what I went through. I worked to build it up in Tulsa so people would know about the program. I was on the starting force of a Family Advisory Council St. Francis Children's, involved in the new building, help coordinate the radio-thon in getting families pre-recorded stories and live interview for the Children's Miracle Network raise money. SPAN merged with Neonatal Parent Network and we became the Oklahoma Family Network, truly statewide and growing in the NE part of Oklahoma which I had worked hard and longed for, we have a NICU coordinator who visits St. Francis, Pediatric oncology coordinator and another NICU coordinator who works on the other hospitals. I am the NE Regional coordinator and my passion continues to be to visit the families who are in the hospital, I know what it's like when you leave the NICU, but then weeks later you are re-admitted, your life has already changed but often times that readmission changes your life even more and you gain some acceptance. I am the co-founder of a metabolic/genetic support group, we just finished our 1st year. We are working on our 2nd year of Tulsa Sibshops, a program I helped to coordinate and lead for the siblings. I left 2 churches and joined Sapulpa Bible Church and have been there for 4 years. I graduated the Oklahoma Partners in Policymaking course, a course that teaches you to partner with your policymakers, learn what people with developmental disabilities deal with. I've doubted my Christianity, questioned my faith, blamed GOD for Jeremy's disabilities, realized this just happens and this is life. This wasn't where I seen myself when we started 2000 with my 4 month old son.

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