4th fracture and first dislocated knee.

This was taken last Sunday afternoon to send to family and ask for prayer. She told me she wanted a smiley picture but if you look closely you can see in her eyes that she was hurting.

Alex slipped on some water and fell. I saw it happen out of the corner of my eye and it was one of those moments where you see something happen and it feels like slow motion. You try to react and stop what you know is about to happen but there is no way to do that. I keep replaying it in my head because soon as she fell she lay on the ground completely still, hands on her leg, and complete shock on her face. She kept saying, “I'm okay, I’m okay, I’m okay. I was pretty sure she wasn’t but she is so strong it is sometimes difficult to know. I sat on the floor beside her for a little while and just talked to her and prayed with her. Finally she admitted through tears that it was hurting a lot and Brent was able to get there to help me get her to the couch. A bit later we tried a bath because she kept saying she thought she was fine it just hurt a little.

She sat in the tub for over an hour and then we got her settled back in bed. She screamed when we moved her so we were further convinced it was fractured and with the way the knee looked and how swollen it got I was afraid the knee had been damaged. Since it was weekend and a holiday weekend we would have had to take her to the ER and we have had this conversations with her doctors in the past where we all agreed that unless we were unable to control the pain it was best to wait until she could be seen by her doctor in clinic since her disease is so rare that most doctors have never even heard of it and would really not know what to do with it. We were able to be seen by her orthopedic surgeon on Wednesday and have X-rays. This doctor is truly amazing. She was not in clinic Wednesday but was in surgery. She had told us to have the X-rays done and not leave until the nurse had called down for her to read it. Next thing I knew she was upstairs and sitting down to talk with us. She confirmed that it was broken and the knee was dislocated. She felt she needed to set the knee but because of the disease and the unknowns about the condition of the bone she thought it best to do it in surgery. She said it was likely she would need to pin it to keep it set but wouldn’t know until she had manipulated it back into proper place. They scheduled it for the following morning.

When we were sitting in the office waiting for the surgery to be scheduled on Wednesday Alex was just sitting there playing a game on her iPad. I made sure Alex understood that her leg was broken again and that they needed to do a little surgery to fix it. She was a little bit upset because she hates the way she feels after being put to sleep and she didn’t want that. After she asked some questions and we talked a bit she looked at me and said, it’s okay mommy, life is just life and I just have to live my life. I was shocked by her strength when I knew she was struggling. She teaches us so much.

We had to run to urgent care to have the Covid test done because it is required prior to sedation. Thankfully they were willing to come out to the car to do it so we didn’t have to take her inside and move her again. Alex had told me at the office that she was upset about having to be put to sleep because she hates it. On our drive to urgent care she all of a sudden said, it’s not so bad when I go to sleep. I kind of like it. I breath the smelly air and then I play eye spy with my nurse while I get really tired and then my eyes close and I go to sleep. She said all of this a couple times on the way home. I know she was being brave and convincing herself that it was okay and she was okay.

The cat in the hat statue outside the cafeteria at Vanderbilt is one of her favorite things to see when we are there so she wanted to get her picture with him when we got some pizza and a drink for lunch after her appointment.

Each night was hard but she slept a little better every night. The first night she was only able to sleeping in ten minute increments until about 4:30. The first couple nights after a break she has trouble falling asleep because she wakes up with a jolt and cries out. Then she will sob, asking why this happens to her, and then say this Is why she doesn’t want to go to sleep ever again. It‘s so heartbreaking to see her hurt so much through the pain and through the trauma caused by what she has been through. She has fewer of them each night over the week and then they stop happening. Tonight is the first night since Sunday night that she has not had these jolts wake her.

Thursday morning we had to be at Vanderbilt at 7 am and her procedure was scheduled for 9 am. They moved very quickly and we did not have to wait long in the waiting room or back in the holding room. Everyone came in to talk and Dr. Johnson came to see Alex to ask her about what kind of cast she wanted. We made sure they were planning to put on a waterproof cast so she can still enjoy the water and Alex chose the colors she wanted for her cast. She was tired from her restless night and being waked up so early but she was very sweet through all of the getting ready.

The nurse had Tangled playing on her phone and let Alex carry it with her as they rolled back. It was hard to watch her go but so good that she went happily and peacefully. Before she rolled back I was able to give her hugs and kisses and pray with her.

It is hard to not be able to have Brent or anyone else there with me while she is in surgery but this was the perfect opportunity to get some much needed quiet time. I got a chai latte and opened my Bible. It fell open to Psalm 94 so that is where I started and I read and journaled until they called to tell me They were done and Dr. Johnson was ready to speak with me.

I chatted with the doctor while I waited for Alex to wake up so I could go back and be with her. They showed me the xray from that day and explained how they were able to get the knee back in alignment. They did not need to do any pins and everything was able to be done without opening the skin. We were thankful for this. She did say that due to this injury and needing to set the knee they now better understand how fragile this bone is. She said the bone is very soft. They had to cast the leg almost straight and she is not supposed to weight bear at all for at least four weeks. We will re evaluate at that point and decide if she needs to be re cast or if she can go back to the clamshell custom brace that she had. She hates being still and even with the amount of pain she is in she can only stay in one place for so long so we take several walks a day around the neighborhood, pushing her in the wheelchair. There was a lot of encouraging conversation also. I had a chance to discuss the conversation and telemed appointments we have had with a specialist in Baltimore who has been a real blessing since we were first connected with him about three months ago. She was not familiar with the treatment plan he has laid out but was very interested in learning more and said she planned to contact a few colleagues of hers in the limb lengthening specialty who she knew to learn more as well. She also asked me to give this Baltimore doctor her contact information because she is interested in speaking to him also. She was encouraged by our conversations and very supportive of our decision to seek other opinions. She expressed that she thinks we need to move toward stabilizing this bone as soon as possible. We discussed how doing this could affect some other potential options and whether those are good or bad. We discussed several other limb salvage options as well as possible lifts for her Short leg. Each possibility had questions, pros, and cons so it does make it difficult to make some of these decisions. She reiterated again thay this is so hard because there is so much we don’t know. There isn’t a right and wrong answer with this. She said there are so few people with this disease and even fewer people who have it only affecting an extremity Bone That it is difficult to choose the best decision. She discussed some other doctors who might have information that could be worth getting. By the end of the conversation she was agreeing that if this procedure can be done for Alex it could be a great option and she is supportive. This was helpful for us because we do value this doctors opinion and knowledge and probably the thing we love best about her is that she is willing to say when she doesn’t know and encourage us to seek outside.

Finally Alex was waking up and they called me back. She had a hard time feeling groggy and dealing with pain. They had to work at it a little bit to get her pain managed to a place where I was able to move her to the wheelchair, into the car, and get her home without too much discomfort. Even with pretty good pain management she cried every time we hit a bump in the road and the road between Nashville and Murfreesboro is definitely not very smooth.

Before we left Vanderbilt Alex wanted to see the butterflies and the horse and get some grapes and cheese from the cafeteria. She gets a little bit spoiled on these doctor day outings but I would say she has earned the spoiling. It is always hard to deal with the set backs, pain, frustrations, and lack of sleep. She doesn’t like people to see her sad or upset so she smiles and is sweet. What happens at night, when the distractions are gone and it’s quiet, or when the cast leg is itchy and she gets frustrated, or when she is just over it and can’t keep a smile on anymore is what we have to be ready for and help guide her through those times. She is so strong and amazing and we want to nurture that strength and that go get em personality that won’t let anything stop her but we also want to make sure we are nurturing her little heart when she is scared, sad, itching, frustrated and hurting. Those times when she just doesn’t think she can handle it. The other kids see this struggle and they step up and are strong for her. They step in and do silly games or skits, play games, read books, take her for walks when they see she is having a hard time. We are unbelievably blessed with these children who truly love one another and want what is best for each other. Sure, they fight and argue like most brothers and sisters do but for more often they love.

It is hard as the parents as well. Often when Alex is struggling and done we are having similar emotional struggles but for different reasons. Brent and I get to a place where we are tired of the night after night of interrupted sleep at best, juggling work, yard, household, the needs of the other kids, and the needs of each other. We feel like we can’t put one foot in front of the other anymore. This is the real that often hides behind the veil a medical parent puts on to be able to cope. Sometimes I feel like it’s the only way to survive and sometimes I think I need to take it down and be real. So tonight I am laying it out. I don’t want this to seem like a place where we say we have it all together, we are always trusting, always happy, always peaceful because that is certainly not real. What is real is happy, sad, joyful, heartache, peace, uncertainty, calm, scared, and sometimes anger all jumbled up together and coming out in different ways for different ones of us. They other kids show so much strength through all of this as well and we want to make sure we are meeting their needs and recognizing their heartache and struggle when it is showing all while so much of the focus does have to be on Alex. All in all our life is a beautiful MESS but what continues to be revealed to us in the end and all throughout is that God’s mercy endures forever.

We ask that you continue to pray for wisdom as we have further conversation with doctors and explore more deeply some treatment options for Alex.

We ask that you pray for us to cling tightly to God and to one another as we all walk this road together and struggle together.

◄ Psalm 100 ►

English Standard Version Par ▾  His Steadfast Love Endures Forever A Psalm for giving thanks.1Make a joyful noise to the LORD, all the earth! 2Serve the LORD with gladness! Come into his presence with singing! 3Know that the LORD, he is God! It is he who made us, and we are his;a we are his people, and the sheep of his pasture. 4Enter his gates with thanksgiving, and his courts with praise! Give thanks to him; bless his name! 5For the LORD is good; his steadfast love endures forever, and his faithfulness to all generations.