Ilse's doctor heard back from Dr. Kelley, the SLOS specialist up in Baltimore. Dr. Kelley agrees with our immunologist, hematologist, and pedi regarding Ilse's need to be on an antibiotic; however, he believes it needs to be a daily medicine instead of 3x a week. I am a little dismayed at that, since I infer from that that Dr. Kelley thinks Ilse is at more risk for getting an infection than we had previously thought.
I am relieved that the antibiotic will be administered only once a day. I had been worried that it would be a 3x a day antibiotic. I know some have to do that, and they have figured out how to do it in an efficient manner. When Tim had his surgery and I had to take nearly a whole day's worth of Ilse's medicine to the hospital, it was difficult for me. I had to take two doses of cholesterol in syringes; three doses of Tylenol, in case her teeth were bothering her or she got a fever; one dose of Prevacid; water; 60ml slip tip syringes; a few extra 5ml syringes in case I needed one (because you never know), AB Otic drops, which I forgot and had to ask my mom to fill a prescription in the hospital pharmacy; one slip tip 5 ml syringe still in the package, in case I needed to reinflate Ilse's mic-key balloon; you get the picture. Ilse's cholesterol and Prevacid had to be kept cold and shielded from light, the Tylenol had to be at room temperature, and everything had to be kept from germs-- and in a hospital that isn't easy.
As you can surmise, I am glad not to have to add another few syringes of daily antibiotic to this drama. I can just give it to her at night when she is in bed asleep. Then I won't even have to worry about her barfing it up, if I do it just right. Nice!
In addition to a daily antibiotic, Dr. Kelley asked for an amino acid panel to be done. He suspects that Ilse is lacking in the amino acid arginine, which grows muscle mass and therefore (somehow) helps cholesterol and the immune system. If Ilse is indeed lacking in this or any other amino acid, we will be able to give it to her and hopefully boost her immune system that way.
Dr. Kelley also wants to test for mitochondrial disorders. I am not sure if he wants to do that now or if he wants to see if the arginine helps her immune system first.
As the doctor told me all of this, I found myself not knowing if it was good or bad news on the whole. I don't know that it is either. I do know that God skillfully made Ilse. Proof of that is found in the mistake I made this week with her. I have been thinking that her top tooth was on its way out, since the gum was splitting there, but then I saw her with her bottom tooth touching her top gum, and what do you know, it fit perfectly in that split part of her upper gum. I concluded that her bottom tooth was puncturing her upper gum. :( I was wrong though. Tonight I can feel that it is indeed her top tooth coming out, exactly, perfectly lined up with her bottom tooth. I told her, "God took great care when He made you, Ilse." I know it's true, and I never want her to doubt it.
I asked the dr. if there was something I needed to do to be even more careful of Ilse. She said we do very well, we are very careful, but she did tell me that Ilse needs even to be in a different room than a sick person. I don't know how I am going to work that taking her out at all. I just know we can't stop living life. I can sit with her in the nursery; I can take her own toys wherever we go so she doesn't touch anyone else's. I can keep her away from unvaccinated kids, since now she is behind in her vaccinations.
Here's a hint to those who don't vaccinate. Did you know that there are kids out there who get their vaccinations but that their bodies don't make the antibodies in response like they should? Then you take your kids around them and can potentially get the immuno-compromised kids sick. And then they can DIE. We had Ilse tested. She does make her antibodies like she should.... I am so thankful for that. I have to be careful, though, because Ilse has not had her mmr yet. We won't get it until she is much older and can handle it better. In the meantime, though, I am concerned that she could catch one of those sicknesses.
I have to be aware of everyone who is coughing, what the boys touch (like the bottom of their shoes that had been in the Walmart bathroom!), who has a tummy ache, who has a cold.... Etc..
But again, we can't stop life. I can just do the best I can, and I can pray it is good enough.