We were anxious and excited and nervous for Seiden's follow-up appointment with Dr. Mac after her first sclerotherapy treatment. We thought Seiden looked really good, but we were also not oblivious to the fact that her right cheek was still very swollen and tender to the touch. It hadn't been but 2 weeks since her procedure, but it seemed like we would have seen a little more improvement by this point. I don't know if I've ever really described what sclerotherapy treatment is. So, here is the description in layman's terms. Sclerotherapy is a procedure used to treat malformations of the lymphatic system. A medicine (the type of medicine injected into Seiden's cysts was one of the chemicals that makes up chemo) is injected into the malformations. Essentially, this will cause them to shrink. However, just like so many other things, it gets worse before it gets better. And, the side effects are pretty scary because of how strong the medicine is. There are some pretty mild and normal side effects you'd expect from any surgery, all the way to permanent damage. They swelling, pain, bruising, hyper-pigmentation, capillary dilation, nerve damage, embolism, and even necrosis (skin death). Thankfully, Seiden had only experienced the mild ones like swelling and tenderness. I wouldn't even say she was in pain, just tender if you touched her cheek or she bumped into anything, obviously!
So, on this Monday morning, Cody, my mom, and I hopped in my car and headed to Ft. Worth to go see Dr. Mac at Cooks. We were hopeful for good news and anxious to see what he had to say about what she looked like. He wouldn't be doing any type of testing on her. Just purely observing her and making sure that everything was healing properly and she wasn't developing any of the severe complications from the procedure. Her appointment wasn't until 3:00. So, it was kinda nice to be at a little slower pace that morning compared to our other mornings when we have to be at the hospital so early. We left Abilene mid-morning and got to Ft. Worth a little after lunch time. We stopped and ate at our favorite, 'Ole South Pancake House, then went and did a little shopping on University. Hello Lululemon! And Gap Kids, Anthropologie, and Kendra Scott, and Pottery Barn, and J. Crew... By the time we had eaten and done some shopping in the University Park Village, it was time to go to Cooks.
We didn't have to wait long to go back and see Dr. Mac, and Seiden was less than thrilled when she saw him and figured out she was going to be examined...again. Poor thing sees scrubs and a stethoscope and she knows exactly what's about to happen. It's all she's known and seen since the day she was born. Dr. Mac and all his nurses were so sweet to her and just talked to her and soothed her. We had to sit with her and hold her arms and legs down while he was doing his exam. Thankfully, one of the nurses held her legs so Cody could hold her arms and her head was in my lap so I could rub her head and lean over her to help soothe and calm her as much as possible. It didn't take long, but it seemed like forever. After he was done looking at her cheek, neck, and feeling around, we sat her up and decided to take her to my mom who was waiting in the Starbucks right across the hall from our room. She was just so upset and Cody and I could both tell that he wanted to talk to us by the look on his face. We were going to need to be able to hear and concentrate on what he was saying. So, we thought it would be better if she could go sit in Starbucks with my mom and get a treat and play while we talked with Dr. Mac. Plus, she was ready to not be around doctors anymore and just needed a break and to play and run around!
After I took her to mom, I headed back across the hall and into the room to hear what Dr. Mac had to say. He told us what we had been fearing. That he was not overly confident with how the procedure had gone and was afraid that this may be a really long road with many, many of these sclerotherapy procedures in our future. It was tough news to take. Hearing that was probably the worst news we had gotten since we had found out about Seiden's cyst when I was 19 weeks pregnant with her. Her entire stay in the NICU was so positive and she only climbed uphill and leaped over obstacles and overcame milestones. This was the first time that something hadn't been good or great news. He wasn't saying that the procedure didn't work, just that it didn't work as well as he'd hoped it would. You could just see the disappointment all over his face. Which, was really sweet to see how much he cared and heart crushing knowing this news. I honestly don't remember everything he said. There was so much he told us and so much to process. He was hopeful that everything would play out and that these treatments would work for her. It would just be more procedures because of how her body hadn't seemed to respond to the medicine like he hoped she would. Granted, he was only able to do three injections because he injected the 3 biggest cysts and had used the maximum amount of medicine injecting those 3 cysts. However, while he was feeling around on he cheek, he said that the cysts hadn't seemed to start to dissolve like they should have at the two week point. We made an appointment for another sclerotherapy treatment on August 3rd and headed out to my mom and our princess.
We walked out of the room and into Starbucks and my mom could see it all over our faces. It was impossible not to be emotional, plus, she can read us both like the back of her hand. We told her everything and just sat in Starbucks and hugged and prayed. After we sat there and talked for a second, with a happy, laughing, perfect, beautiful, toddler running around and playing with her toys, we decided a trip to Build-A-Bear in Cooks was necessary after hearing the news. Plus, Seiden had been through a long car ride, a tough exam, was about to make the trip home in another long car ride, and had just been so good through it all. So, she needed a treat! We let her pick out a bear, help stuff it, pick out it's clothes, and then we dressed it for her. She LOVES the bear and snuggled it the whole way home.
While we were driving home, we started talking about how the appointment had gone. We knew that everything was going to be fine and that Dr. Mac was going to do everything he could to help get these cysts dissolved in Seiden's cheek and neck. And all of a sudden, I just said, no. No, I am not going to accept this news. Seiden was put on this earth to bring glory to God's Kingdom and part of that glory is proving that God still performs miracles of healing. So, as we were talking about the day and the appointment, I just declared that this news was not truth and God still wasn't done healing her after this first procedure. It was in His hand and I knew He was going to heal her and prove that this treatment had worked because He is the one that put Dr. Mac in our lives to provide this opportunity for sclerotherapy instead of another major surgery. It wouldn't be until August 3rd when we would get the totality of how the first treatment had worked. That would be when Dr. Mac would perform another ultrasound on her cheek and when Seiden would undergo her second sclerotherapy treatment. The ultrasound would be followed by he procedure and after all that was done, we would all have a better understanding just how miraculous God was and what He can do if you just believe and have faith. This was not something to be sad about. This news was something to rejoice in and allow God to show us just how big He really is. We have a kind, loving, smart, caring, beautiful, funny, energetic, and just perfect baby girl. God gave her to us. He chose us to be her parents. He was going to do big things in her life. That's what we choose to believe!
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