A little bump in the road

Over the last few days we have learned the reality how different it is caring for a child with Levi's needs. He's now looking so "normal" it's easy to forget how different he is on the inside.

For starters we learned just how hard it is to break the routines of life and travel. Trying to stay on top of his meds while on the road and out of our normal routine was a challenge that took me by surprise. We didn't realize the toll that traveling can take on a family and didn't allow rest time when we got home from our Christmas excursion to Clovis and of course Levi got sick. So now I am learning that the flu, which would just be an inconvenience in a normal body is a major deal in Levi's.

He came down with what seemed to be the stomach bug on Wed evening, which Dan was fortunate enough to contract as well. Our first challenge was to figure out to to keep vital meds down his little body when it was rejecting everything else. We navigated that pretty well, or so we thought until the little guy just wasn't perking up the next day like we would have hoped. Since he does have a more complicated medical picture we couldn't take any chances and so I took him to the ER last night thinking that they would be able to make sure he was adequately hydrated and maybe to a blood test to make sure things were all in line. I should have figured out by now that things NEVER go as easy as you have it planned out in your mind when it comes to these types of things. So my quick trip to the ER turned into a night admitted to the hospital which has now turned into two nights at the hospital. His sodium/potassium levels have been all over the place over the last 24 hours, so we now hope to have those headed in the right direction at this point. Last night he got good rest with Dan at his side and we hope to be released today.

It's striking how different it is dealing with a hospitalization now verses a few months ago. This time around we have all sorts of familiar faces to run into and an unwelcome familiarity with doing life at the hospital that it almost makes it easy, annoying but easy.

I would like to mention a friends child, an 18 month old boy named Simon, who was admitted the same night as Levi, but only with a much more serious situation. He fell and hit his head while getting out of the bathtub and he developed bleeding between his brain and skull. His parents Rena and Jesse Fray had to lifeflight him to Children's for emergency surgery, by 2 of the same neurosurgeons that operated on Levi. He is in recovery, with very little known in the future. There is a lot of hope, as he's showing many good signs of brain function, but it's a long road to stability. Please keep them in prayer, as the journey they have just begun is near and dear to my heart. Here is a picture of the little guy.

Thanks so much for still tracking with us.

Love,

Kara and Fam