Lauren is doing well on her new medicine. I still don’t think I’ve processed it properly. I’m just catching my breath and letting a lot of the anxiety and sadness from the last decade slowly drift away. It’s a process.

Lauren isn’t yet out of the woods though. It’s a different sort of challenge and we’ve seen it progress drastically in just a year! You see, her PEG that she so desperately needed has helped her body start playing catch up and go from a little girls body to a preteen just hitting puberty all in the short space of 1 year. With this burst of weight and change, her scoliosis has progressed so much. It’s so sad to watch my once very active for what she could do little Lauren to having a bigger girl struggle to walk because her knees hurt, because her body is bent in places it shouldn’t be. She has an S bend scoliosis, but she also has it where it rotates within her too. This is called rotoscoliosis. Her right ribs are a couple of cm more forward now than her left, and her left ones are much further back. The S bend has gotten worse, and she looks like a decrepit old lady 😦

We went for her fitting for a brace back in Nov, to see if we could at least stop it progressing. She started to wear this in January when she got it but as a by product of 95% of the food she has being liquid, the tightness of the vest kept making her vomit. So that particular brace couldn’t be worn. We tried it over a month or so and the vomiting got worse.

We then got back in touch with the orthotics and she was booked in in early Feb for a different kind of brace, and a day before they closed for quarantine due to covid! So we had to wait for an appointment late March for her to go and luckily see a guy that is near retirement to have a mold done, for a new brace to be fashioned from it. We’re still waiting to have this arrive.

In the mean time, although her lungs are well in general since Kaftrio, her right lung is being squashed and has some infection in it that we’re not being able to remove during physio. We’ve chatted with the physiotherapist and will be trying a couple of things, but the worrying thing is it’s squashed and we can’t get to it.

Our next appointment is on the 7th May all being well and I’ll be taking her this time so I can meet the surgeon and then talking about when surgery will take place.

This will be a bigger and more dangerous operation than she’s ever had and I’m sad just thinking about it. It’s around 6-9hour surgery and she’ll have rods in her back. The ins and outs of it will be discussed further down the line, but my goal for May is to make sure I trust the guy who will likely be doing surgery on my child.

Lauren’s complicated and day to day mood/feelings around food changes and whether or not she vomits. She’s struggling and it’s hard going and super sad on some days, especially bath days when I can see her body just getting worse. It’s been some hard months watching this all unfold and not being able to control any of it. As always though, she keeps smiling mostly and brightening up our world.

Prayers welcome!

Aprilxx