Please excuse any misspellings... My fingers don't love me today.
Looking back through my posts, I realize that I haven't posted in forever. So much has been going on over here that I haven't had time to do anything... even sleep is a rarity.
Ilse is still on the path to wellness. It might be a long path, especially considering they aren't sure what is wrong with her. They have ordered some specialized immune system tests, and maybe we will know what the results are in about a week. Hopefully it won't take longer than that. A week is already a long time. She did have a bacterial infection, and they had no idea where it was coming from. It could be her mic-KEY button, but we would have to pull it and culture it to know for sure. Unfortunately, we have to wait to do that because they put Ilse on a strong antibiotic, and again, unfortunately, it was obviously too strong for her since it set off a string of night screaming that the world has never seen before. At least my world! Finally we put two and two together and the doctor had us stop the antibiotic. Ilse slept pretty well last night, and so did I. Ahhh. However, I managed to wake up more tired that I had been the previous day when the night before I had barely gotten any sleep at all.
And it was good that yesterday I was more awake, because I didn't have time to even use the bathroom from the morning all the way until six or so. A lifetime of practice finally put to good use. Lol. Yesterday Ilse and I went to get her labs drawn for the aforementioned blood tests. The first lab, at which we had an appointment, told us after we had waited of course, that they couldn't do that test. We hightailed it down to medical city, and yes, I had to talk myself down just in order to park at that place.... and got her labs drawn there. She had two diarrheas while we were at the lab. That made three up to that point, and scattered through out the day where about four more. Needless to say, they are concerned about dehydration and c diff. for this baby. We won't know about the c diff. test for a week also. At the lab they determined that Ilse is too small to do all the tests they wanted, so we have to go back again on Friday to draw for the rest of the tests. One of the tests they did draw for measures how well the white blood cells fight infection. Because, I think it is clear by this point that Ilse has a bit of trouble with infections.
The concern for the immediate future is that her bacterial infection might reassert itself since we couldn't finish the antibiotic. If she gets a high fever or screams uncontrollably, we are to call the doctor ASAP, or, if it is night, we are to go to the emergency room.
Lord willing, Ilse got enough antibiotic to do the trick. Although, if it is the button causing this problem, it will likely reassert itself and we will be in a world of trouble, unless of course, we can have a different antibiotic, although at this point I am pretty wary of too much more medicine.
The rest of our busy day yesterday was spent at UT Southwestern medical center. Tim had his much awaited appointment with a wonderful hip doctor. He was wonderful, and not just because he looked exactly like Mark Ruffalo. He did tons of x-rays, and gave a much better description of the surgery, complete with hand gestures. Tim will plan on having the surgery late May, but first he needs an MRI to confirm what is going on and to see the exact state of his cartilage.
If everything looks good, or bad, whichever way you want to phrase it, he will have the surgery. It doesn't sound as bad as the first doctor made it sound, and regardless of how long the recovery is, having the surgery in state is an automatic bonus. The first doctor said we would have to go out of state, and that sounded atrocious, as you can imagine, since I am determined not to go anywhere without my kids.
The boys are doing really well. They learned about colloquialisms, paramedics, aerodynamics, and oh my goodness, earlier Chris said something so brilliant I wish I could remember what it was.
I finally got Ilse's nose suction machine figured out and in use. Hopefully it will help her. It is too bad that there is no way to decorate it like a squirrel or something. It isn't too cute.
Mom came over yesterday at the drop of a hat and stayed all day long to watch my boys. They mostly behaved. Now my laundry is all folded, my kitchen is clean, and my floors are vacuumed. Thanks, Mom!
I have lots more to write about. However, this post is so long that I had better give your eyes and my fingers a break.
Today, though, if you have a minute, pray for my friend Amber Bowers who is having her third baby today. This is her second daughter, and could also be her second child with SLOS. One baby with SLOS is hard enough depending on how severely the child is affected. Two would be significantly more difficult, and yet, the Lord really does give us the ability to accomplish all that he asks of us. And He has given the Bowers family so much joy. They are truly a wonderful example to me. Each child is a blessing, no matter the way God makes it.
As I have said before, I don't know what I would do with a 'normal' baby-- I have gotten so used to Ilse.
I have another post to write soon, but now, I am going to call in the precious boys who just went out to play, and we are all going to lay down for a nap. It is practically a given though that Ilse will wake up the second I lay myself down.