Well loyal readers, I thought I would give you an update on how the day went.
1) I got a call from the rep for Enfamil telling me that she had some samples for Maddy. The call came at 9:00 am and she said if I could get to Gladstone before 10 am, she could give me some samples. So, I gave up my nap, got dressed and went over to meet her. She gave me two cases of Nutramigen, worth almost $400, and told me that she would arrange for some samples of another formula called Nutramagin AA, which is even more "broken down" than the regular stuff. So, that was the first blessing of the day.
2) I got another call driving back telling me that I could get three days of samples for Maddy's thickener, instead of having to buy it from the Feeding Clinic. (We ordered the thickener earlier this week but it won't be here until Monday.) Since I had to go out that way anyway, which makes it was another $13 blessing.
3) I got several other errands done, including picking up a prescription for Josh at the doctor's office. While we were there I gave them the phone number for the Enfamil rep, and they were able to call her and get some formula for another baby whose mom couldn't afford it. The mom actually came out to the waiting room to thank me for giving them the contact info. (I am still amazed that formula reps don't usually work with family care doctors, only pediatricians and specialists. Sarah, the nurse there, told me that she is pretty sure that the rep said yes because I had already talked to her and she knew about Dr Scott from that conversation.) I am glad I could help another little baby. He was adorable, and the mom reminded me so much of me four or five months ago. I gave her my phone number and told her that if she needed to talk she was welcome to call me. Even if I never hear from her, I know that I was on the Lord's errand. I am grateful that he trusts me.
4) I picked up Maddy to go have lunch with Michael, and got a call from someone at the school district asking me if I could come pick up some things for my children. I asked them what they were, and they said that they had some items donated to the district, and that our three kids were part of the group chosen to receive them. I picked them up, but didn't have time to look at what they were. When we opened them up, after the kids had gone to bed, each bag had a brand new pillow with pillow case, a warm blanket, socks, and a pair of sweats. The kids will love all of the things, especially with all the cold weather. The sweats are all too small for the kids, but they will be great to pass on to the family that we are adopting. We will talk with the kids about it on Monday, but I am sure they will be glad to have more new things to give the family. They have been coming up with wild schemes to get more things for that family all week.
5) At my doctor's appointment there was no real news. We know a few more things it is not. They took 14 more vials of blood, some will be processed here, some will be sent to Utah, and some will be sent to Philadelphia. It will take a few weeks to get the results. They are also going to do an upper-GI to look for a certain kind of ulcer that doesn't show up on blood tests, and to see if there is anything else unusual there. The doctor is going to call and see if he can twist some arms so that they will do it, even though I am still havign fevers. Someone should call me Monday to let me know when they are going to do it. He also added several more areas that he wants scanned when they do the MRI next Wednesday. They started me on another antibiotic. It is the last one to try that we haven't used yet. Anything after this would have to be an IV antibiotic. He doesn't really expect it to work, but it is one of the things to "check off the list" as we are trying to figure out what it is.
He reminded me today that we have excluded thousands of possible diagnosis, but that there are still quite a few more that we need to discard, and it may be a while before we get it figured out. He also wanted me to be prepared for the chance that it will go away at some point, and we won't ever know what it is. If that happens, it could come back, or it could just end up an episode that never has an explanation. He says that it happens more often than most people would think, but that as long as I am having more than two fevers a week, we need to keep looking for the cause.
6) I have laughed a lot today. There have been a lot of moments of mirth at our house. From Maddy getting her finger stuck in her nose, and fussing until I helped her pull it out (it wasn't really stuck, she just kept pushing it in farther instead of pulling it out for some reason) to Kat deciding to make toilet paper art, there have been lots of small moments that remind me how lucky I am to be a mother to such great kids. I am also very grateful for a husband who laughs along with me, and who can see the humor even in dark situations. No matter how bad things get, when you can laugh and smile with the person you love most in the world, it feels like a blessed day.
7) We still haven't had any snow or freezing rain, but the weather people keep promising it will arrive sometime tonight and stay, in at least small amounts, until Sunday night. Mom and Mark went up to visit Polly and help her with moving into her new house, Maleena and Max are traveling down to California, and Anna is heading to the coast for the weekend. So, we are keeping lots of people in our prayers, praying that their travel is safe!
8) Sarah has had a migraine every day for the last six days. She got another one tonight. The are upping the dosage on her prophylactic medications, and we are hoping that helps. They still don't have the MRI/MRA results, but hopefully by next Wednesday they will know if there is anything beyond the migraines going on. In the meantime, prayers for her are always appreciated.
I am so grateful for a warm house, food for everyone (including Maddy), clothes that fit, and insurance that covers the ongoing medical costs for the whole family. I am blessed.
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