I stayed up until about 3am praying and crying and researching last night. Once I get an adrenaline rush like the one I got yesterday when we got the news about Kendi's liver enzymes, there is no way I can calm down until I feel like I've accomplished a certain amount of "something."
Today we didn't have any appointments. I got up at 7:30 to give Kendi meds, but then went back to bed until 11:30am. I didn't intend to sleep that long. It seemed like a few minutes. Eric woke me up at 11:30 so we could start school with the kids. By 1:30 I was dragging. I am just mentally and physically exhausted from yesterday. At 2pm I asked Eric if I could just go back to bed. Sometimes sleep is a tempting release from all the "stuff", ya know? Eric was more than willing to keep the kids going on school, and the house running efficiently. I drifted away within a few seconds. He came in at 5pm asking what he should do for dinner. Good grief! I slept the day away. But it helped and I feel much more with it now that it's 9pm and I should be thinking about bed. =-)
I have felt very loved today. So many of you have commented on the blog AND written to me personally. A few of you have sacrificed some of your own precious hours in the day in order to help me figure out what might be going on with Kendi. One of you said you were ready to drop everything and travel cross-country just to be here and support our family for a few days. Loved. I feel loved. And I feel that Kendi is loved. Thank you.
Meds: We haven't found a good combination for hiding the taste of Kendi's bitter medications, but she's taken 3 doses and not thrown up (outside of her mouth). She's my hero right now. Honestly. I have tried a tiny amount each time I mix the meds, just to see how good or bad it is. Tonight was the best combo we've tried, but still 45 minutes after a tiny taste, and several drinks of soda, I can still taste the bitterness in my mouth. She had to take three big bites of the stuff. It's work, but she does it. I think she knows she has to. Having sprite to drink as soon as she takes a bite seems to be the key for her right now. Then after she is done, we celebrate with 5 M&Ms. Tomorrow morning we'll be trying pancake syrup mixed with peanut butter.
Liver stuff: I did hear from our (awesome) nurse today (on her day off!). I told her I just needed to know more about what we were testing for and could be looking at. Tomorrow they are testing for Hep A, B, and C as well as Epstein Barr (mono) and CMV. We're looking for horses before we look for zebras. Obviously we'd celebrate if it were Hep A, mono, or CMV. Something acute would be a gift over something chronic. I spent the majority of my time last night reading about Hep C. There aren't many kids with HIV/Hep C combo--at least not many that are known. But from those that do have both diseases it seems that the Hep C progresses more quickly in kids with HIV.
Tomorrow: Tomorrow is going to be another busy day. Labs at 7:15. Nephrologist at 8:45 (have to wait from about 7:45-8:45 in the waiting room because it would be supid to go back home). Appointments for Taevy and Bright at 9:30 and 9:40 (which will really probably be at 10:00 and 10:15 because our doc is always late! The appointment for Bright is for the poop issues. For Taevy, incontinence issues. After their appointments it's back to the lab for Kendi's blood work. Then it's across town to the surgeon's office so he can fill out paperwork for Eric's short term disability (they still haven't approved it and we're not getting a pay check tomorrow because of it). If we make good time we'll be back home by 1pm. Then it's lunch and school and house chores--oh! And AAI work of course! Can't forget that one! We've got big plans to chill out and watch a super hero movie tomorrow night. I'm looking forward to it, as silly as that seems.
Sampson: I'm sorry that I sounded so grumpy about Sampson last night. I know that there are people out there who would scoop him up if they could. Several of you have written to share that just because you didn't email doesn't mean you wouldn't adopt him if you could. And honestly, that means a lot to me--just to know he is being thought about, even if you can't adopt him. There are a few families who would seriously consider adopting him, but they both need Ghana to give them an exception because of age or family size. We'll work on that and hope for the best. I just have to believe he won't wait long.
Eric: I've just got to give a shout out to my man! Here he is recovering from a kidney transplant and it ends up that he's taking care of me much more than I'm taking care of him. =-) He's such a strong guy. The pain is minimal now. For the most part he is recovered. And he's lost almost 20 pounds!!!! But his blood sugars are crazy because of the new meds and they won't release him to go back to work until they are under control. He has been Mr. Awesome the last few days. He's done laundry and dishes and helped kids with schoolwork and tried to keep the house clean. He's also working on a project of his own. He sits at the computer, which is on the dining room table for now, working on this project that he hopes will bring in a little extra money (that we can put directly towards debt). He has been, for the most part, incredibly patient with the kids, even though I know the steroids he's on are making him feel (on the inside) incredibly frustrated with them. I'm so thankful for my husband.
After my day of "checking out" I feel like I'm ready to be tagged back in. I'm okay. We'll be okay. We've just got to take it one day at a time right now.