Laila update 5/12

Today we are down at Riley for another check up with Urology. Super duper fun that our friend had an appointment today and around the same time so we were able to share Big Bertha van and Laila had someone else’s ear to talk off for the two hour ride down here ;)

Urology had nothing new to say. I brought the log I keep of all of her intake and output like they asked me to. She only has output of half of what she takes in and she was concerned but then called nephrology (kidneys) and they just said to give her more fluids which doesn’t makes sense so I’m not doing that. I guess it is what it is.

Things have been going pretty well! We are now 1.5 weeks of sleeping through the night and no crying in pain. I’m still not sure what was causing the pain but I broke down and started giving her a daily dose of baclofen (a muscle relaxant). Her ortho doctor has been trying to get me to give it to her for a couple years but the sleepiness and floppyness (yes it’s a word…in my dictionary ;) ) were not worth it to me when Laila seemed to be just fine with her muscle tone and her tightness actually seemed to help in some aspects. But, the crying and pain were just too much and since since no one else could figure out what was going on we decided to give in and try it. It seems to be helping so far with little side effects…

We are slowly increasing her feeding rate on her pump every day and have been able to get all her calories in by about 3:30 most days except when we have therapy and take her off for that. No night time feeds at all most days. Our goal is to keep increasing to a point of taking breaks in between larger feeding and eventually back off the pump. It would be amazing to do that before our vacation in June.

We got her genetics testing back and she does have a duplication of the 16th chromosome. You can google it if you want but basically it’s nothing that explains her self destructing this past year and a half. It will be interesting to see what the neurosurgeon who “just knows there’s something genetic wrong” finds out that there’s really not.

My social anxiety is pretty much gone. I think after the hospital I just needed time to process without a bunch of questions. I’m also starting to get some peace about being tied to Laila non-stop. It really is our reality now. Unless our nurse can be there, she’s with me. And now we are in the midst of baseball season for Jackson and since Jack coaches, he’s pretty busy.

For years the Lord has been slowly bringing me to solitude. I used to be the one in all the activities, helping everyone, volunteering for everything. It was a hard reality to be so different and so secluded but with it I am finding peace. I’m spending more time alone with the Lord, I’m finding those people who will fight for me and be there for me no matter what, even if it means they always have to come to me. My house is mostly clean ;) and I’m finding joy in cooking again which is a love for me. I’m learning over and over again that this life is not my own and (most days) I’ll gladly give it over to the care and control of my Lord Jesus Christ.

Earlier this week in my solitude I let myself go back through all the pictures from the hospital on my phone. It’s amazing how fresh those feeling still are and how tears are always waiting on the surface. I’m amazed that we still have Laila and for all purposes other people see, she is the exact same girl. She has every bit of her cognition and wit back. I’m thankful for however much more time we have to listen to her come up with crazy things to say on a daily basis. This morning she said “mom, right now I feel like a crazy person!” Then she cracks herself up and you cannot help but laugh too.

This is a picture of her writing “her notes” while I was cooking dinner the other night. In case you cannot read her writing: “she takes baclofen, she got 50 out of her ostomy, and she likes Zoë the best.” And yes she talks in third person because she’s cool like that ;)