A Big Day Coming

I have been keeping the blog in the dark a bit… Sometimes sharing things makes them feel more real than we’re ready for…. But I felt a nudge on Friday as we made yet another trip to Riley and things seems more and more real. I need to call up the prayer warriors that are so faithful to our family so here goes..

Laila has been steadily declining. If you have seen her you would probably have no idea but it is real. She is at the lowest possible setting on her feeding pump to get all her calories in for the day and if we try to push her body and increase it then we have major issues. She now has a catheter in her ostomy at all times because if we leave it out she gets backed up and sick really quickly. She is tired most of the time, falls asleep in the car all the time and has gotten pretty crabby when she’s at home with us. Teachers, therapists and nurses get the best of her while she’s doing those things that make her so very happy but we as her family get to hear “my tummy hurts, I’m so tired” and the attitudes that go along with just not feeling well most of the time.

In July the idea was introduced to us that Laila may have a mitochondrial disease. This would explain why we had to remove her colon and why now her small intestine seems to be shutting down as well. Two years ago we began to see the decline in her health and strength with no explanation why. Cerebral palsy is difficult because it is so different in each person and when things go wrong you just blame it on CP as a garbage can diagnosis when something more can be going on. The things going on do not fit just effects of CP, something more is going on and it is terrifying.

We need your prayers. This Wednesday we will finally see the right geneticist who deals with mitochondrial disease and will get his take on the whole situation. I’m sure this will start a whole round of testing and many months before definite answers come. Laila’s neurologist put her on what they call the “mitochondrial cocktail” of medicines the beginning of August but we have not seen much improvement from that. She will also be having a few tests done Wednesday, one study of her small intestine that her surgeon wants and we will meet her cardiologist for the first time for an echocardiogram.

We are taking this one day at a time. When you ask us how she is our answer will be “today is a good day” or “we’re hoping for a better day tomorrow.”

Lots to take in and process, lots to pray about.

I’m thankful for this amazing girl and her infectious smile….. No matter what….Thy will be done Lord.