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. :)