As most know, our son Nathan has Spastic Diplegia Cerebral Palsy and Dystonia. He was diagnosed with CP at age 2 and Dystonia at age 6.
First, a little background on our incredible kiddo. Nathan is 7 years old and one of 6 kids. He walks with forearm crutches and can take up to 30 steps on his own! He cannot sit on the floor like other kids, he has to “W sit,” which is extremely strenuous for his legs. Nathan can stand alone for short periods of time, but his balance is a huge struggle. He has been in several types of therapy at West Texas Rehabilitation Center since he was 15 months old & has made amazing strides in the years of being there. Nathan’s had multiple X-rays of his hips to check for rotation, has undergone numerous MRIs, has spent a couple of years getting Botox injections in his legs, and had been on a medication called Baclofen.
We had heard of a surgery called Selective Dorsal Rhizotomy (SDR), but thought it was completely out of our reach since we were told no one in Texas performs this type of procedure..until we found out there actually is someone who does it in Houston! In November of 2017, our family met with a surgeon in Houston who believes Nathan to be a good candidate for this type of surgery. Nathan had to get updated X-rays of his hips, and on June 12th, 2018, we had a gait analysis done. On July 25th, 2018, we finally heard back—the surgeon wants to go forward with the surgery! We were thrilled, as this can tremendously improve his quality of life.
(Nathan having the gait analysis done)
Nathan has been informed about everything involved with the surgery and is excited and anxious to do it. He will have to stay in the hospital for 3-4 days, then will have intense therapy in Houston for 6 weeks, 4 hours a day, 5-6 days a week afterward. It will be 6-18 months before we see the true results of this surgery, but from all our thorough research, we have faith he will be walking unassisted in a matter of time!
Now down to the sobering details: Our family needs help to make this happen for Nathan. We aren’t the type of people who ask for help unless it’s absolutely dire, and fortunately have managed to cover all the expenses or find ways to make it work thus far. The reason we need help isn’t necessarily for medical expenses, as we have been told insurance and/or the hospital will cover the surgery. I called the patient coordinator on August 22nd, 2018, since they had told us it would take about 3 weeks to know whether or not insurance will work with either hospital. Apparently Hermann Memorial had set a surgery date for September 1st, but we wouldn’t hear anything until after that date. The coordinator had seen a surgery be denied by Superior Medicaid before with Hermann, so she didn’t think insurance would cover it with that particular institution. Not 100% sure if that coverage will include the intense therapy after the procedure is complete.
We have decided as a family that moving to Houston is our best option, as finding care for our other 5 children and driving 12 hours round trip is extremely strenuous on us as a family. Moving to Houston also provides Nathan more options for accessibility that just aren’t available in a smaller town like Abilene. Moving isn’t cheap, especially for a family of 8, so for the past couple of months, we have been trying to figure out how to make this happen. We’ve been looking constantly into new jobs and rental housing; however, we have hit a road block. We need to really fix up our house to selling condition, will need gas money to move, funds to rent a u-haul, and potentially need help with a deposit on a rental house. Between now and the anticipated surgery date, we will be working hard on saving as much as we possibly can and fixing up our house to sell all while juggling 6 kids. If we can make this move happen, we know it will be the best thing for Nathan & our family. We will keep everyone updated as we get further information. If you can help in any way to make this move happen for our family and ease the transition for Nathan’s recovery, we would be enormously grateful.
On September 12th, 2018, I e-mailed the patient coordinator to ask if they had any new information on the insurance situation. A few hours later, I got a call from Hermann Memorial. Insurance will work with Hermann on Nathan’s surgery!!! They’re setting a date for the surgery for late May/early June 2019. We are absolutely ecstatic to hear this news, while simultaneously feeling terrified. Reality is setting in that we have a LOT of work to do to get ourselves and the house ready by then.
We aren’t strangers to the fact that financial hardship is present for a lot of our friends and family. (The economy has been rough to us all!) If anyone would like to contribute but isn’t able to financially, we can ALWAYS use help fixing up the house, getting things clean and organized, packing, etc. Obviously our biggest burden right now is financial, but we welcome any and all help you’re able and willing to give. We are so grateful for your friendship, your generosity, and your support. It truly means the world to Nathan and to all of our family as we make this life-changing transition.
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