Meet Liberty

Today is one week from Leah’s laser surgery.  The hardest thing is that Leah has been showing some really big trauma behaviors. She flips into fight or flight mode pretty easily. It might be getting into her car seat, sets her off. Or changing her diaper. Not getting what she wants for lunch. Or every single nap and bedtime. She screamed so hard over the weekend that she ended up hoarse for several days. If you’ve been following our journey, you might have picked up that Leah loves and adores Paw Patrol with her favorite pups being Skye and Liberty. She also really adores little dogs. In what most people would consider a crazy decision we have decided to add to our family and Leah now has her own little Liberty. In just the few days that Liberty has been home we’ve seen a calming in Leah. If Leah is upset she will request Liberty and her little pup will curl up next to her. Or if Leah’s upset we can take Liberty out to play and it will help reset her emotions. Leah’s even helping little Liberty learn how to walk on a leash. Leah’s still exhibiting big behaviors but we are thankful for the extra tool to help her regulate. AND Liberty is being peace and calm to mom and dad too. You might not get it if you’re not a puppy person, and that’s ok but there’s a reason why there are therapy dogs in this world and it’s our prayer that Liberty will continue to bring a sense of peace and calm and a little bit of quirky fun into a crazy, chaotic, really hard time in our lives.  

Leah’s casting has also relieved us of the hard duty of having to do stretches for Leah. That has been a nice break! But we haven’t really been able to answer the what comes next question because honestly we didn’t really know. Yesterday Leah had OT and we worked on some skills for transitioning. The OT introduced a “Now -> Then” picture chart schedule for Leah. The hope is that the pictures can help Leah predict what is coming next and lessen some big behaviors.  

We anticipated that today Leah would have her cast removed. However, the OT decided that they wanted to keep Leah in her cast another week. Basically right now we are playing a Pros vs Cons game. If we took Leah’s cast off today we most likely would have needed to schedule another sedation casting appointment soon. Unfortunately keeping the cast on means that we can’t see how her skin is reacting under the cast or to the laser therapy. Keeping the cast on means her pinky and fingers are in the ideal stretch position. Unfortunately that means Leah is losing muscle and function in using her hand…you get the picture, it’s a tricky balance right now. It’s obvious that the team has Leah’s best interests in mind but they have also expressed that she’s a tricky patient between the trauma and the less than ideal contractures that are occurring. The OTs want to get as much stretching and best positioning in place before she has her next major grafting procedure.  

Today also brought the hard news that the team thinks that Leah will be in and out of casts for the next 12-18 months. It will most likely be an in cast for 2 weeks and out-of-cast for 1 week type of a situation. Just another confirmation that this burn journey is a marathon for our sweet girl. We try to not get overwhelmed and take it one step at a time which right now still feels day to day and week to week. One baby step at a time.  

Ways to Pray! 

Thank you for all your prayers!  We appreciate ALL of you!

  Meal train:                          

Leah’s rehab Amazon page (if it’s empty, we occasionally add):