R Update, April 20, 2009
Hello, friends and family,
Remember us? We have not written a “R Update” since September 2007, and much has happened since then that I thought you would be interested in. Don’t be nervous; I have nothing but good news to report this time!
While I haven’t written in 18 months, life has not been without its challenges. To review. . .
· In February 2007, R had his last surgery, a third ventriculostomy (ETV). This ETV was the relatively new and risky procedure where a small hole was put in the base of his third ventricle to open up a passage for spinal fluid to drain into the basal arterial space. Only about 50% of all ETVs seem to be successful for any length of time, and not many people with hydrocephalus are even candidates for such a procedure. By God’s grace, the procedure has worked flawlessly thus far, and R has had over two years without surgeries or complications to this point! We are, of course, continuing to pray that God will keep this little hole in his third ventricle open and working, and we are trusting God to do just that.
· In March 2007, God provided us with gifts, contributions, and a benefit for R that allowed us to pay off all of R’s existing medical bills and to pay for the rest of his medical expenses for 2007. Without such an amazingly generous gift from so many people, there is no way that we would be “in the clear” with his surgical and therapeutic expenses. What a gift that was to us!!
· In April 2007, it became clear to us that David’s commuting from Madison to Milwaukee, WI on a daily basis for over a year was just too hard on our family, so our house went on the market. Even in the face of a quickly declining housing market, God sold our house in less than 5 weeks. Amazing.
· In June 2007, we moved from Madison, WI (which we, by the way, still miss!) to Brookfield, WI, a small town just outside of Milwaukee.
Our move has not been without challenges. R’s first year of preschool (2007-2008 school year) was a difficult one. Transitioning his therapy (physical therapy, occupational therapy, and speech/language therapy) and pediatric care were both rocky in the beginning. Remodeling our badly neglected and out-dated “good deal” home proved to be challenging, time-consuming, and inconvenient. And, finding a church home, a community of believers, and friends has proved very difficult. But, God is faithful, as always, to provide for our family. We feel like we have turned a corner in the last few weeks, and we wanted to share the faithfulness of God in our lives with you.
· In January 2009, R was officially discharged from occupational therapy at the clinic because his fine motor skills had progressed to the 79th percentile for his age from the 3rd percentile for his age in June 2007. He will have a re-check and re-evaluation in a year to ensure that his skills are still improving, not regressing. I am confident that R will continue to see progress in his fine motor skills, and we are praying for God to continue to strengthen his hands and arms so that progress is possible.
· Last summer, in June 2008, R started twice weekly speech therapy for a language comprehension delay, which is common in children with any type of neurological issue and which had revealed itself during his first year in preschool. This last week those appointments were decreased to twice monthly, and we expect him to be discharged sometime over the summer. R is doing so well in this area, and his understanding and comprehension of things spoken or read to him has just blossomed!
· In December 2008, our physical therapist suggested a three to four month break (i.e. challenge) to see how R would do without weekly physical therapy. In his gross motor skills, he had progressed from the 19th percentile for his age in June 2007, to the 50th percentile for his age in December 2008. After a three month break (during the cold, snowy winter, no less!), R’s gross motor skills improved to the 55th percentile for his age in April 2009. He will be re-evaluated for progress in his gross motor skills in about a year, and we are praying for continued progress in this area. It is so fun to see R run, jump, climb, and keep up with his friends at play!
· R’s progress academically has been nothing short of a miracle this year as he has learned to write his upper-case letters, and he is in the beginning stages of reading and sounding out words. In school this year he has gone from begging me not to take him to school (ever!) to asking if he can please go more often. Six months ago we were firm in our commitment to send R to kindergarten after he turned six years old, and we are now seriously considering sending our new five year old to kindergarten in the fall. Please do pray for us as we continue to pray and ultimately make a decision regarding R’s schooling next year.
· Relationally, we are all making friends in the Milwaukee area, and we are so blessed to have people in our lives here to call friends, a “care-group” to be part of, and a church that we are all content with.
· In January 2009, we met Brandon, Cheri, and Jackson (4yo) Barnett, a family newly moved to the area from South Carolina. Jackson was born prematurely, which resulted in hydrocephalus, and, like R, he has had many surgeries and complications. R and Jackson became instant friends, and both sets of parents really enjoy having another couple who understands experientially the journey we have all been through. Like R, Jackson has been surgery free for about two years, but, unlike R, he still has a VP shunt to control his hydrocephalus. We are praying that Jackson will remain healthy, will continue to develop normally, and that his shunt will continue to work.
· Work at Harley-Davidson for David is not without some challenges, but we are grateful for his job security in this uncertain economy.
· Work for me has been beyond wonderful. I am still privileged to be able to work on a flexible, part-time schedule for a company that makes insulin pumps doing their patient trainings. I absolutely love the work I do, and I love that I can work around our family’s schedule and needs.
When R was diagnosed with hydrocephalus in January 2005, God led me to a verse that has been my comfort and prayer ever since.
John 9:1-3 says, “As he went along, he saw a man blind from birth. His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’”
The works of God have definitely been revealed in R’s life throughout his five short years! We pray that R’s life will continue to be a testimony to the glory, goodness, and faithfulness of God. We praise Him for the work He has done and continues to do, and we thank Him for letting us see His power and His love as He works in R’s life and body. R is happy, healthy, social, growing, learning, and active. These things are nothing short of a miracle, and we are thankful, amazed, encouraged, and elated!
Thank you all for humoring me by reading this update; thank you to those of you who have prayed for R and our family. Thank you to those of you who continue to ask how R is doing; it means so much to David and me. I said early in my “R Update” emails that R would know of his prayer warriors, and this is so true! David and I talk about the goodness of God and the power of prayer so much with R, and it has been wonderful to see him embrace God as his own personal Savior.
I have included a recent picture of R, just for fun. He continues to do his much enjoyed horseback riding therapy (hippotherapy), and he has recently learned to guide “his” horse, Gola. Also, I’ve included a picture of “our little monkey” hanging out on the playset at our neighbor’s house!
Please update us on your lives when you have the time. We love hearing how our faithful prayer warriors are doing, and we find great joy in being able to pray for you all as well.
Praising God from whom all blessings flow,
With love and thankfulness,
XXX
…And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever! Amen.
–Ephesians 3:17b-21
