Things I am learning

Walgreens sells tegaderm, CVS does not.
Neither Walgreens or CVS sell duoderm.
Insurance does not provide enough duoderm or tegaderm for a baby who sweats a lot or is learning to eat food.
If the top of the NG tube happens to pop open, stomach contents will be
deposited wherever Leo is laying.
Brothers are not grossed out by stomach contents, but sisters are.
Jordan is the best assistant when I need an extra hand inserting said NG tube. Amanda prefers not to be involved.
Complex scheduling can make your life more complex.
Childrens Hospital of Philadelphia has the best chocolate berry parfait in their cafeteria.
If you leave Jonathan and Ben soaking in the tub while you write a blog post, expect a huge mess to clean up!

We are family

“Sometimes do you think we have taken on more than we can handle?” Jeremy asks as he is standing there holding Leo. That is a loaded question and one we discussed while I was cleaning up from dinner. Yes, we have taken on more than we can handle in our own strength. Yes, we are physically and mentally exhausted. Thankfully, God gives us the strength we need for each day.

Rewind just a few hours and Ben is telling me that he is so happy he is a big brother to Leo. Ben is sitting and hugging Leo and playing with him.

Yes, life can be hard most days, but we are family(Leo included) and right now we are a family that is learning to do hard things and maintain a God honoring attitude.

Please pray for us as we have many medical decisions to make concerning Leo in the next few weeks. These decisions will probably involve him having another surgery or two. Please pray specifically that the doctors will be able to zero in on the breathing difficulties he had after his last surgery so that they are not repeated in future surgeries. Also, please continue to pray for his eating. We are slowly, very slowly making baby steps forward in this area.

On our toes

It is all perspective. Yesterday I thought my biggest problem was Jordan leaving the freezer door open. The end result of that was a boatload of thawed meat that needed to be cooked. I didn't know that about an hour and a half later I would be riding in the back of an ambulance.

Leo had what we believe to be his second seizure. It was his first seizure since being in our family. Both seizures are linked to a feverish spike in temperature after receiving an immunization. One minute we were eating dinner with Leo sitting in his high chair, the next minute he started shaking. This was probably the scariest moment of my life. It seemed like it took forever for the paramedics to arrive but Amanda assures me it was only about 5 minutes. Once at the hospital they focused on getting his fever down. About 2 hours later he was flirting with the nurses and we were discharged.

Leo is somewhat predisposed to seizures with his genetic syndrome, so we will be coming up with a plan before any more immunizations. We are now under instructions to not let any fever get high. (As if we have control!) But basically his temp was only 102.8 so it doesn't take much of a fever to trigger a seizure with him. Bottom line- stay healthy this winter (again as if we have control). I'm thinking a plastic bubble sounds good right about now.

Today was a stressful day, as I was constantly watching Leo. He hasn't had a fever all day so I am hoping we get some sleep tonight and that tomorrow will be a better day.

Oh, in case you were wondering. I cooked and refroze about 4 dinners for our family with the thawed meat. Thank you Jordan for helping me plan ahead for when life gets crazy and I don't have time to cook.