Month: June 2017

The kids have been attending Summer Fun Days at our church – a VBS program being held once a week for a month. The VBS program has been Maker Fun Factory, which focuses on God as our Maker and the purpose He has for each of our lives. The music is fabulous and the kids love it. We bought the CD of the songs and the kids have been listening to it every day and singing the songs. They have been very excited about attending each Tuesday morning. Typically VBS programs are held for a week, four or five days in a row sometime during the summer, but for whatever reason our church has been doing it once a week. Administratively this has been a challenge for the leadership, but I am so thankful that it has been once weekly this year. Having a morning each week leading up to his surgery where Daniel hears and focuses on God’s amazing workmanship in creating HIM and that God has a purpose for his life has been wonderful for us.

All parents are concerned about the psycho-social development of their children. We all want our kids to have an appropriate sense of personal value. We try to build that into them from the earliest days by meeting their needs, being dependable, loving unconditionally, providing opportunities to discover and develop their skills and interests. As Christians, our hope is that our children learn that their ultimate value comes from the awesome God who made every one of them unique, precious and loves them forever, so much so that He made a way for the forgiveness of their sins through Jesus. In a world that prizes success, beauty, intelligence and physical ability, among other things, the parents of children with special needs have an extra concern about the way the disability affects the child’s sense of self and personal value. When children are quite young they don’t necessarily see their differences, but as they get older they become more aware of how they are different from other children and how they can’t do the same things. The feelings of being inferior and left out can become overwhelming and defining. Special needs parents (or at least this one) are probably extra concerned about tuning into these emotions in their children.

We are beginning to see some of this in Daniel. It is subtle at times, and he doesn’t talk about it often, but every now and then there will be a comment that reveals what is percolating in his mind about his differences and lack of inclusion. He also has an overly strong sense of self at times, and needs a little downward adjustment, shall we say. As we head into what will most certainly be the most painful and extended challenge of his young life so far, I am so encouraged that he has had several weeks of focus on how he, personally, has been made by God, how God is for him, how God will love him forever, and how God made him for a purpose; he is here exactly as he is for a reason, and it is a good reason. We’ll be playing the songs from Maker Fun Factory in the hospital after the surgery and in the months to come as Daniel works on his therapies. Here’s a clip: Made For This.

Hey folks! Thank you so much for your interest in Daniel and his upcoming surgery.

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Thank you!

Daniel had his regular physical therapy appointment today, and since there is only one more appointment before surgery, his therapist wanted to prepare me for what we will experience on day 3 after surgery. She taught me the specific ways we are to move Daniel and get him out of bed and into his chair. No spinal extension, no trunk rotation or tipping side to side, no hip-leg angle greater than 90 degrees. It was good to get some of this information now. They will teach us again in the hospital, but she said she finds that people take it in better when they’ve had exposure prior to the hospital environment when they may be tired, stressed, and the child is beginning to experience the pain after the epidural has been removed. I asked if we would need to continue to perform Daniel’s transfers in this same way after we got home or if this was just for in the hospital. She said we would need to do it for a while – like months. Wow.

Daniel seemed to think this was all hilarious. The therapist had also mentioned that there are touch screens over the beds that are horizontal so you can touch them while lying flat in bed, so he is super excited and thinks this is going to be the greatest time ever. I’m glad he feels positively about it all, but we did try to help him understand that it isn’t going to be all fun and games and to be at least somewhat prepared for the pain that will come as well.

Tonight I have a lot going through my mind about the logistics of his post-surgery care here at home. We don’t think his current bed is going to work for all of this, so we will need to find something else for the next several months. I’m wondering about how we will safely get him up and down the stairs as our bedrooms are all not on the main floor. So, I have a busy mind, but I also have a creative God, so I know He will help us figure all these things out.

Thank you to those of you who have been praying especially about Daniel’s discomfort at night and the impact on all of our sleep. Things are considerably improved in that regard. He is still not getting the greatest sleep, as he is quite tired during the day, but he is not crying out a lot during the night and we are for the most part getting through the nights without interruption. Thanks again for upholding us!

We are now only about two weeks from Daniel’s surgery, and there are moments when fear rears its ugly head. It is to be expected, of course. Now and then Daniel will express fears of various sorts – “Will it hurt?” “Why can’t Mommy be in the operating room?” “Will I feel Dr. Park cut my back?” “Will you be there when I wake up?”. Oh, boy, these are hard questions for parents! Not hard to answer, but hard to answer in a way that is honest, preparatory, and calming.  Not so expressed are the fears we have as his parents that leap to our minds, not welcome and not helpful. You know how it is – “What if” has a plethora of possible sentence endings. So, the fears are there for all of us and they must be handled as a normal part of this process.

But lets talk about hope! The potential benefits of this surgery for Daniel are huge and wonderful. Prior to our move to St. Louis we were aware of Dr. Park and SDR. We met a little boy in Winston-Salem who had his therapy appointment right after Daniel’s and we watched his amazing progress in the year after his SDR surgery. His family had traveled to St. Louis for the surgery and it was obviously worth it. We had begun looking into SDR but were dragging our feet out of fear. When we ended up moving to St. Louis we suspected part of God’s purpose related to the potential of Daniel having this surgery. I (Mom) still was very hesitant about submitting our paperwork for an evaluation appointment. In February, I attended a weekend where I was able to focus on areas of healing needed in my life. The big issue addressed that weekend was my anxiety in regard to Daniel’s well being. I was able to let go of a significant burden of fear in relationship to Daniel and leave that at the feet of Jesus. When I got home I knew it was time to move ahead with looking into SDR for Daniel, and I did so. The potential benefits for Daniel from this surgery are such that I could not look him in the face when he is 18 and say, “I didn’t pursue that surgery for you because I was too afraid.” Surgery always has risks, but everyone who undergoes surgery does so because the benefits outweigh the risks. The hope that Daniel may be able to stand by himself, to walk independently, to have fewer orthopedic surgeries in the future, to have spasticity and contractures taken away, to have less neurological stress, to be able to focus better and have improved cognitive function, to have increased use of his left arm… these fill the surgery with a lot of hope for Daniel’s future.

Over the weekend we read a post on the SDR Facebook page which asked the question, “What were Dr. Park’s predictions for your child post-SDR, and has your child met, not met, or exceeded those predictions?” Almost everyone said Dr. Park’s predictions had been spot on. One indicated their child had exceeded the expectations, another that their child was slightly behind those predictions, but was also lacking motivation and didn’t work very hard after the surgery.  (This is a concern we have for Daniel. He has resisted walking practice and strongly resists at-home exercise programs. Please pray that he will have the motivation and enough reduction in discomfort after the surgery that he will want to work hard to recover strength and “be all that he can be” in his post-SDR body.)  We feel we are in very good hands. We are very happy that Daniel’s regular physical therapist works some weekends on the post-op floor with the SDR kids and is very familiar with all that is involved. There are several reasons we believe God brought us to St. Louis, but this is definitely one of the biggies and we are thankful, and we are HOPEful! Hope is an exciting and wonderful thing. We serve a God of HOPE and we are entrusting our family and specifically our son into His care.

One of the ways we are preparing for Daniel’s surgery is to take him off some of the regular medications he has been on.  He has been taking a muscle relaxant for some time and this has had to be stopped. He has taken another medication for itching which has also been discontinued. Both of these are also sedating and have helped Daniel (and his parents) sleep at night. Removing the muscle relaxant has significantly increased Daniel’s spasticity and caused quite a bit of discomfort at night. He cries out, moves around a lot, grinds his teeth and wakes up quite early. He is not getting the sleep he needs and neither are we. Often, he needs me (Mom) to lay beside him, rub his legs, and help him relax, sometimes by holding him or just trying to sleep beside him. Neither of us does well without good sleep.

Another significant challenge relates to Daniel’s behavior. We have found that the more Daniel is in discomfort, the more difficult his behavior is. We are seeing a ramp up in challenging behaviors in the last several days. I would love to say that we are mature enough to handle all this without getting ruffled, but that is not the truth. It is hard for us to deal with his defiance and outright disobedience over and over again without getting frustrated.

Finally, he is eating very little. Whether this is because it is summer, it is hot and exciting things are going on, or because he is in more discomfort, it is hard to say.

For those of you on Daniel’s prayer team, we would ask that you join us in praying about these challenges. The absence of the medications is complicating our lives, but it shows us the real effects of Daniel’s cerebral palsy and why he needs this surgery in the first place. Thank you for upholding our family. We are grateful!

We have started this blog to spread the word about Daniel’s upcoming surgery and garner as much prayer support and encouragement as possible as we enter a new phase of Daniel’s life and the life of our family. Daniel will be having Selective Dorsal Rhizotomy (SDR) on July 5th. SDR holds much promise for improvement in the limitations caused by Daniel’s cerebral palsy.  (See the About SDR page for details.) Following the surgery and initial recovery, he will begin intensive physical therapy 4-5 times per week for six months, then 3-4 times per week for the next six months. This is a great undertaking for all of us, especially Daniel.