Where we have been, where we are now, and where we are headed!

It has been several weeks since the last true update. I have found it rather difficult to finish anything since arriving home, although many things are started. As I hope the photo update last week showed we jumped back in to life at home with both feet and have enjoyed being back together. As always there are lots of things pulling Brent and me in different directions and while we enjoy this aspect of life in many ways I particularly find it difficult to keep my head on straight most days. For that reason I have had a blog update started on paper for almost two weeks and continue to jot down another sentence or two every now and then. This is the culmination of those fragments. And the photos are just random pictures of the kids, they don’t relate to the post in any particular way.

Throughout this medical journey with Alex, which began just three months after her fourth birthday, there have been many ups and downs, much confusion, emotional roller coasters, and much heartache and questioning. I have tried to share some of the good and the bad so you are able to know how to pray, help, and encourage. As most of you know, February 1st this journey came to the long awaited surgery day and Alex was wheeled back to undergo a complex Rotationplasty. Over these last seven and a half weeks, as we have walked with her through the recovery process there has been a lot of time to unpack these last years, go through the emotions and even the seasons where we coped with buried emotions. What has been incredibly clear to us through all of this is how great God is and how He has never left us to figure it out on our own. Even in the confusion and heartache we felt his presence. There have been plenty of times we have not understood what was happening, why God would allow it this way, and even times of crying out to God asking for understanding or for different circumstances. There have been many moments of joy and moments of frustration and anger. Looking back on all of this from here we see clearly how it led to this unique team of doctors, nurses, and staff at Scottish Rite for Children in Dallas. We see the way the details worked out and wow, how different it looks from here than it did during all the waiting. We see God's mercy in allowing us to see what his plan has been to some degree. We know God does not have to ever give us this insight but we are thankful for it. Apart from where the medical side brought us we also see God's hand at work in our family throughout. While we would never have wished this journey on Alex or our family we continue to come to the realization that we also would not wish it away. While it is sometimes difficult to understand this sentiment the reason behind it is the growth in the strength and bonds of relationships in our family. We have seen our children and ourselves grow in our relationships with the Lord. We have seen growth in our marriage. We have learned to communicate in better ways at home and with others. Much of this is due to being forced to quickly learn to advocate for our child and express thoughts and concerns we had never dealt with before. It has been through trials that God has brought about this growth and refining. I think of the heat of the refiners fire. I think of the pressure applied to create beautiful diamonds. Another song the kids and I have listened to often throughout the last two years is Diamonds by Hawk Nelson. I am thankful for the many gifted musicians whose music has encouraged our hearts. https://youtu.be/Yf1ARbpB0gA

I guess with all the many changes in treatment plans over the last year especially, I have not done as good a job as I had hoped explaining what Alex was having done. I began posting pictures of her leg following surgery and there have been many questions about whether the backward foot would be removed later, why her foot is backward, how it will work, and what exactly was done and accomplished by this procedure as well as many other questions. We are in no way bothered by the questions because it reminds me to explain things better and helps people understand her. I realize that having walked every detail of this for as long as we have and with all of the research and conversations with many doctors we have had it makes complete sense to us and sometimes I forget that everyone else has not been a fly on the wall through all of these things and to many this has not made sense. I will include a link for a video of a traditional Rotationplasty and next will explain the differences between this traditional Van Ness Rotationplasty and the variation that Alex had. https://youtu.be/njJUcTbR2SY

With Van Ness a section of femur, knee, and tibia are removed and the remainder of the tibia is rotated 180 degrees and attached to the remaining section of femur. The look of this and what Alex has are the same except that her incision, where the leg sections have been connected is much higher on her leg than these others. Because the entirety of Alex's femur was damaged by the effects of Gorham-Stout Disease there was no residual femur in which to attach the tibia section. These incredible doctors were able to remove the whole femur and knee. The tibia was rotated 180 degrees, the top reshaped and fit into the hip socket. At this time they sewed her tibia(new femur) into place using her existing leg and hip tissues. The other most amazing thing is how they were able to curl the nerves around themselves so that they fit into the new space. I can't think about any of this without be absolutely amazed and thankful for the knowledge, wisdom, and care of these doctors.

One thing that helped Brent and I greatly with the grief process and loss of our daughters limb was being able to donate the bone and tissue for Gorham-Stout research. There are multiple research groups who will at one point or another be able to learn from bone and tissue. There is great comfort in knowing that this was good for her but also has potential to help these teams gain knowledge that could help other families down the road. I mention the grief process because there was some but nothing nearly like we had been prepared to experience. I think part of that had to do with the year of planning and preparation we had leading up to this day and incredible sense of peace God gave us that this was the right decision for her.

This gets us to where we are headed on this road to recovery. There are still plenty of unknowns for the future and things we will deal with as we go along but our hope is that this has rid her body of this disease and that it will not re appear down the road. There will still be scans every six months to one year to make sure she remains disease free. Due to the rarity of the disease at this time and that they are still researching and learning new things about it there is no way to know for sure what to expect but we made our decision for surgery based on the information we did have at the time. Another thing we don't know yet is how strong and stable this new leg is, what her range of motion will be, and what restrictions she will have once she is mobile on her new robot leg. These are all things we will learn as we go and likely there are other things we don't even know to think about yet but we are taking this one day at a time. Alex is excited and looking forward expectantly to when she will be up and around again. Please pray for this season as we are cautioning her to to expect too much too quickly and trying to prepare her for the hard work she has ahead of her.

The week of April 19th, LaRue will travel to Dallas with Alex and me. We have decided Brent should stay home to work this time but making the trip alone with Alex was a bit overwhelming so a girls trip sounded like a good idea. I am looking forward to having this special time with my girls. The week will begin with cast coming off on Monday, seeing some doctors, and first PT and OT appointments. She is most excited about being able to have her first real bath in about ten weeks. The following four days will be daily PT, OT, meeting with prosthetists and any other appointments that are deemed necessary before being able to confidently send Alex home to continue her rehab here. We have been able to begin the process of setting up PT with a Vandy home health who also works with Alex's sweet friend, Ella. It is wonderful to have a therapist who is working with another Rotationplasty patient even though the situation surrounding the surgery is different and the two surgeries were not exactly the same. Finding a therapist with any experience in this area is another answer to prayers.

After the week in Dallas it will again be home to adjust, continue to recover, and look forward to the next stage. Sometime this summer we will head back to Dallas, hopefully as a family, for first prosthesis fitting and next first steps. Alex will have a week or two of therapies as well to get a good start on her new leg and then we will come home and continue the work. This is where the backward foot comes in handy. Her heel is now acting as her knee and the foot taking the place of the residual limb on a below knee amputee and being used to help power the prosthesis. She will point her toes and slide her toes and foot down inside the socket of her prosthesis and strap it around the tibia/new femur. We are thankful that her foot did not need to be cast in because she has been able to take this time to begin training her brain that her foot is now a knee and needs to work differently and in reverse of her other foot. She is getting very good at this and doing it more and more without any hesitation. She is also getting to a place where she tells me the bottom of her foot itches and when she says bottom she means the top but the top that is now on the underside so it is the bottom!! Confused yet! Sorry, it's a whole new world around here. She has worked hard and spent lots of time talking to us about these things as a way of testing herself and working on brain training. Yesterday she and Boone were sitting on the floor doing exercises that required them to clap each others hands. I was taking a video of the two of them because it was pretty cute to watch. I am so glad I was taking a video this particular time because Boone was supposed to be tapping her foot but when he would hit her left foot she explained to him that she doesn't have a foot on that leg, its a knee now and together they laughed. Her giggle and sweet spirit are contagious! Hopefully the link will open so you can see the short interaction between the two of them. https://rumble.com/vf0rg5-no-foot-its-a-knee.html

We do not have any real details about the prosthesis trip yet but will update as we do. There are many hurdles still to cross and many unknowns along the way but just as God has gone before us in the past we are trusting Him to do the same as we continue. We know this does not mean it is always going to be smooth or easy but that in the end it will be good.

I hope this helps clarify some of the details I may have left out along the way and give a more complete picture of the journey from surgical beginning through expected recovery.

Lastly, I want to end with this hymn that has been and encouragement to our family and a reminder of who our hope is in and from where our strength comes.

Sovereign Over Us

There is strength within the sorrow, there is beauty in our tears.

You meet us in our mourning with a love that casts out fear.

You are working in our waiting, sanctifying us when beyond our understanding,

You're teaching us to trust

Your plans are still to prosper, you have not forgotten us.

You're with us in the fire and the flood

Faithful forever, perfect in love

You are sovereign over us.

You are wisdom unimagined, who could understand your ways.

Reigning high above the heavens, reaching down in endless grace.

You are the Lifter of the lowly, compassionate and kind

You surround and you uphold me, your promises are my delight

Even what the enemy means for evil you turn it for our good,

You turn it for our good and for your glory

Even in the valley You are faithful

You are working for our good,

You are working for our good and for your glory.

Your plans are still to prosper, you have not forgotten us.

You're with us in the fire and the flood

Faithful forever, perfect in love

You are sovereign over us.

Words and Music by Aaron Keyes

https://youtu.be/VPkMbhydU9I

If you have a desire to help our family in a tangible way during this time click this link and it will open to the different ways to help. Prayers for continued patience, comfort, peace, and healing are what we continue to need more than anything else. https://linktr.ee/alex_fearfullywonderfullymade