Good and Bad, Happy and Sad

Today was a day of happy moments and also sad news. I am really struggling since the bad tends to overshadow the good. My poor, poor little baby.

First the good:

Today in therapy Ilse ate squash, off a spoon. I punctuate it that way to give the words 'off a spoon' the weight they deserve. That is huge. We started Ilse on just tastes of milk when she was in the NICU, and she didn't do well. Her upper lip would turn dusky, which told the hospital OT that Ilse was struggling to keep her O2 sats up when she had something in her mouth. We progressed from tastes to drops of milk, to small syringes of milk, and then to trying a spoon. She couldn't do the spoon without horrible gagging. Then we tried letting her eat off my finger, and for some reason she didn't gag that way. Then today we tried a different spoon, and she ate squash off it. She ate squash off a spoon. I am so praising the Lord about that. It is truly momentous for a child like Ilse to eat squash off a spoon.

Also in therapy today Ilse sort of sat. She actually totally sat! Our therapist put Ilse's legs a bit bunched up, and leaned her forward resting on her arms, and Ilse sat that way, leaning forward on her hands. She was sitting on her bottom, leaning forward on her arms. Amazing.

Furthermore, Ilse decided today that she would put weight on her forearms in a crawling position. Ilse participated today to be able to do all of this! She didn't hang her head during her therapy today at all. Usually she just hangs her head, won't talk, won't smile, and won't participate. But today I guess the Lord knew I would need some encouragement.

The bad news is that we got the results of some bloodwork we had done on Monday, the day of upwards of ten blood pokes and horrible bruising. While Ilse's metabolic panel came back normal and her cholesterol is up ten points (YAY!), her immunological testing came back all messed up. I believe what the pediatrician said is that Ilse seems to have an IgG deficiency. I confess, when I heard what she said next about bone marrow and a hematologist/oncologist, I had a hard time remembering the exact word that went with IgG, but deficiency is really the only word that makes sense. They are referring her to a hematologist/oncologist for a bone marrow biopsy, because the blood testing has gone as far as the immunologist can take it, and now deeper testing needs to be done. I know the doctor stressed the fact that Ilse is going for the hematology side and not the oncology side, but the minute I heard those words my heart just got so heavy and I cried. My poor little baby. If they have to actually do that biopsy, she will have to be anesthetized which likely means an intubation, which any SLOS mom knows could result in oral aversions, which is what we have been working against all this time. That made me cry. Thinking about a needle in my baby made me cry. Tim just had his MRI with contrast, and the spot where they injected that dye into the joint is all bruised and sore. He was hurting, and I don't want my little baby to feel like that. And as I sat there with tears on my face... It's not like I was sobbing or anything, just teary.... all I could say to the therapist was, "God made her blood. GOD made her blood."

He made her genetic mutations; He made her immunological deficiencies. He made her exactly the way she is for His glory.

I am having a very hard time, though, because all those good things that she did today tend to get overshadowed by this one very bad thing and all things that go with an immune deficiency. The having to tell people they can't touch her, certainly can't breathe on her, have to wash their hands before they touch her, etc.. I can't take her to my sister-in-law's one year adoption anniversary because it is at the germ cesspool Chuck E. Cheese, I can't let the boys go because they could bring RSV home on their clothes.... And the list goes on.

The bad hurts. I hurt for my Ilse. She hurts. But when there is good, when Ilse ate off a spoon today and when she put weight on her arms..... and when I get Ilse snuggles, then I feel God's mercy and grace. Those things are His mercy to me, and I am so thankful for them.

Please pray for us, because this is a new layer of struggle. Pray for my baby to keep gaining weight, and that the diarrhea I think is about to begin really won't, and that I will be awake enough to get up in the nights and feed her as many times as I need to so she can grow.

Here is Ilse reading a book during therapy. She was fascinated with the black, white, and red pictures. She actually turned the pages herself with no prompting. And she turned them from the right to the left, just like a true Foster descendant. :)

so much sadness

I am part of a group on Facebook for parents of children/adults with SLOS, and today a lady posted about her sweet baby Aaron who is dying today. My heart just broke for them! I can't imagine saying the words, "spending the last moments with my son." God created all these children exactly the way he wanted them, and yet, it seems so cruel sometimes, especially when it ends in the death of a precious little baby.

It hurts to think of it, but my darling Ilse is a picture of the sin in the world, and the compassion we all show her is a picture of God's compassion for us. I wish I could remember where I read that about God's compassion.... it is so true. Every time we show love to one of the least of these, and children with SLOS are certainly-- in the world's eyes at least-- the least of these, we show love to the Savior and we demonstrate His love for us.

I firmly believe that those who are incapable of believing are not guilty of the sin of unbelief. I tell Ilse all the time that if she can never understand about God's gift to her of eternal life, our God is merciful. I believe she will understand, but there are certainly those who mentally can't or who never even get the opportunity. I believe that Little Aaron, then, will have every tear wiped from his eyes today, and he will have no more pain.

His family, though, will have much pain. Please pray for them.

Life lately

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.

Better hurry!

You know your child has SLOS when

Your kitchen gets covered in egg twice...once going into the syringe and once, um, coming out of the baby.

You wash your car seat cover and base every day. You could do it more often, but sometimes you set your child in a barfy seat just because you might be washing the other thirty thousands mounds of laundry your child creates.

You wash three giant loads of laundry... Just hers, mind you..... At least every day and a half. Those loads include every single burp rag you have and some blankets too because you ended up using them as barf catchers.

It doesn't matter how well you separate the egg, there will always be that one little piece that is like a string married to the yolk... and it gets caught in the feeding tube and clogs it.

You think in mililiters instead of ounces, and when someone asks you how much your baby eats, you have to do some mental gymnastics to give them an answer they can understand. And then you have to stop yourself from rattling off the rate your baby eats, too.

You count your blessing each and every day and thank the good Lord who sent you such a precious gift, because, no matter the laundry piles and egg spills, the wonderful smiles from your little baby are worth it.