Tuesday, July 19, 2016

Prayers for Ben

I know one of the deadly sins of blogging is to begin a post with the words, "I'm sorry I haven't blogged in forever." However, this is one of those times that I must throw the Blogging Commandments out the window. It has been over a year since I have written anything here, and in that time, I have received a few kind emails of introduction from new readers and questions from others. I have been just plain rude and not responded to anyone. It's not because I am typically rude. It is because life outside the blogosphere has been full and challenging. I have found no time in my day, week or year apparently to manage this blog. Thank you so much for reading and enjoying my content. I really do appreciate it and I hope one day to return this blog to its original purpose.

For now, I  am going to revive the blog a bit for a different purpose: keeping family, friends and interested readers in the loop concerning a new development with my son Ben. (If you clicked over from facebook or twitter because you want to know why I am asking for prayers for Ben, this is the part for you!)

Ben was recently diagnosed with (yet another) rare, genetic disorder. This one has caused severe deformity in his legs. Both of his femurs are over-rotated inwardly at a 40-45 degree angle. His lower leg bones (both legs) are rotated outwardly at about a 30 degree angle.

He will undergo 2 surgeries, both double osteotomies, next year-- his senior year of high school. If he does not have this corrected now, he will face permanent disability in the future-- possibly in a wheelchair by his 30s.

In late May or early June of 2017, he will have the 1st surgery. One leg will be corrected. I'm not sure which one yet as the surgeon will go through the specific details with us closer to the date of the operation. The femur and the tibia will be cut into, both bones rotated to the proper position, and then pinned into place. Rods may be inserted as well.

He will be in the hospital for 2-3 days following the surgery and will begin intensive physical therapy while there. Once home, he will continue PT locally and will have to learn to use that leg properly as it heals. This is going to be a long, hard process, taking 4-6 months, because he will have to develop muscles that have atrophied because he cannot move them because of how his bones are positioned. He will also have to relearn how to walk and do it the "right way."

Then, he will return for surgery on the other leg-- same procedure followed by the same recovery, same therapy.

In total, he will be in intensive physical therapy and recovering from surgery for 8-12 months, essentially his entire senior year of high school.

We will not know the date of his surgery until Nov/Dec. We are delaying the surgery until May because if we scheduled sooner, it would keep him from completing dual enrollment this year and there could be complications with our insurance switch over in January. We want to keep things in one calendar year and allow him to finish this year of school without the disruption of 2 surgeries and PT.

When we know a surgery date and the surgeon has given us more details, I will update you. I will also update you here during the surgeries and recoveries throughout the next year. For now let me give a few pre-surgery prayer requests:

  1. This is a long time for all of us to anticipate the what-ifs and scary bits of surgery. I'll be honest and say that I cried a lot when we received the diagnosis and was told that surgery is absolutely necessary. We are all adjusting to the idea and feeling thankful that he can have this corrected. However, it is hard to have something like this hanging over your head. 
  2. I've already jumped several insurance and medical hoops. I am sure there will be more. Please pray that I will have the energy to do it all and that all surgeries, therapies and related costs will be covered by our insurance. I'm already budgeting/saving for tons of co-pays and out-of-pocket expenses. Pray for God to provide abundantly.
  3. Because we want to delay, we cannot schedule the surgery until they open their books for the next year (Nov/Dec). We should be 1st in line and be able to pick whatever date we want. Please pray for this timing though. Everything really needs to line up perfectly because we also still have a Marfan's Syndrome appointment that will take place in the middle of all this. He has to be able to stand on his own (no crutches) for that appointment. We need the final results about Marfan's (a 2-year ordeal) in the fall of his senior year so we will be able to make decisions concerning college. Marfan's is a VERY serious condition and if he has it, it will dictate where he is allowed to go to school. That all has to take place while he has healed from the 1st surgery and before the 2nd surgery takes place. Do you feel a migraine coming on from reading that? Yeah, me too! :) 
  4. This is a bit premature and will probably come up again, but we need a school plan for 2017-18 both for Ben and Brian. Wisdom. Pray for wisdom in this area please.
  5. Pray for Ben's college application process. We are trying to get as much done as is possible this school year (his junior year) because many things will be impossible or extremely complicated to do once the surgeries begin. 
  6. I fear some of you will think I'm being whiny or melodramatic or something not very positive because of this statement, but truly, pray for Ben to come through this with greater maturity and great testimony of God's goodness and faithfulness. He has been through so much for a 16 year old. We have had to delay his graduation (a planned early graduation, granted) because of autism and Marfan's. He has faced a lot of disappointment in the past 4 years. And, you know, most high school seniors are considering what they will do after graduation and who they're going to homecoming and prom with... he has to have both of his legs rearranged, recover, find out if he has a potentially fatal illness, and then go through the leg thing again. I know he is not the only young person to suffer and worse things have happened to others (and I love you all but I don't want to hear any stories about other people and their problems right now), but let me just be honest and transparent and say that this hurts. It hurts bad. I can put one foot in front of the other right now because I know God's promises and trust Him. Ben does too. Pray that we will grow in grace together.
One final note: I know some of you who know me irl are probably wondering if will we continue to homeschool and to run Olive Plants Co-op/teach homeschool classes. The short answer is yes. We are not sure how Ben is going to complete school the 1st semester while recovering (see #4) and Brian needs the Olive Plants tutors even more with all of this going on with his brother. We also need our tutoring income to pay for all the medical expenses. We have some plans in place to allow me the time off I need for Ben but to also keep the co-op in full operation in my absence. An official statement will be released to the OP Co-op members before registration for 2017-18 begins. Rest assured, we need and love Olive Plants.

Thank you for letting me share all of that with you. Thank you for lifting our arms. Thank you for caring about our son and his needs. We love you all in the Lord!

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Heather said...

You rock, Dawn!!! LOVE YOU BUNCHES!!!!!

Beth said...

Just praying for you.