So much for a week without meds!

We were supposed to be off of medication this week but after an unplanned clinic visit this morning Anya is now on four medications. If you recall when Anya was on the steroids she experienced constipation that we treated with several meds and prune juice. Once she started going again she went several times a day (because of her increased food consumption) and this irritated her poor little bottom. She has a rash, irritation, and a few small lesions, all of which are extremely painful when she uses the potty and potentially very dangerous because open sores in the diaper area can quickly lead to blood-borne infections that could land Anya in the hospital and possibly compromise her port. The doctors are taking the risk seriously and have placed Anya on meds that should treat the problem and guard against infection. Three of the meds are liquids taken orally and the fourth is a cream for her bottom, used in addition to the diaper rash cream we've been using. It is frustrating and embarrasing for Anya to have to use this stuff as she was completely potty trained during the day and only wet herself at night prior to going onto the steroids. It is very difficult for her emotionally to have to deal with getting her diapers changed, especially when they're poopy.
Despite all of this she continues to improve as the steroids work their way out of her system. Her moods have become brighter and more stable, although they are still prone to swing on occasion and she cries much easier than normal. Her appetite for food has decreased significantly, but she still wants several snacks between each meal. Her mobility/activity has increased and she has begun to lose the weight and water retention, although this process will take a few weeks. A few days ago she looked nine months pregnant, now it is closer to seven or eight.
In the midst of all of this we still have many moments that give us cause for reflection on our blessings and opportunities to laugh and experience joy. I'll share just a few stories with you before I go.
As a family we celebrate Hanukkah as a way of remembering God's deliverance and salvation of His covenant people throughout history, especially in the salvation that is available in Jesus Christ. We started celebrating about a month late because of Anya's treatment, but lit the third candle on the menorah tonight. Each night we tell a different story of God's deliverance of His people. Tonight I asked the kids if they wanted to tell the story and Anya said that she would tell it. She chose the story of David and Goliath and talked about how God gave David the strength to kill Goliath. She is such a thoughtful little girl with incredible spiritual sensitivity. She teaches and blesses us frequently.
Something else that happened tonight gave us a much needed dose of laughter. Anna has taught Anya that part of being a little lady means not using certain words that other people, including her father, use. Among the taboo words is "butt", which Anya and Anna replace with "bottom". Well, we customarily use Desitin to treat the kids' diaper rash, but the doctor recommended that for Anya's situation we switch to another product with the unlikely moniker of "Boudreaux's Butt Paste". As Anna was applying it to Anya today Anya just lay there laughing and saying "Boudreaux's Butt Paste". Anna and I just sat and laughed along with her as she kept repeating the name and blushing and laughing. Anna asked her and Anya confirmed that a great deal of the humor came from the fun of getting to say the word "butt" over and over!
Last story for the night. A game that I play with the girls sometimes is to sit them on my lap and pretend that I'm interrogating them (which always gets a good laugh from them). The questions I ask are usually basic personal and family information (e.g. What's your mommy's name?) or ridiculous questions with no real answers (e.g. What noise does red make?). Well, I was interrogating Esther and started asking her questions about her dad. When I asked her, "Does your daddy have a job?" She said "yes". I said, "What is his job?" and she replied, "He does the laundry." Anya overheard and said, "Yeah, he does the laundry and cooks and does dishes" and laughed because, unlike Esther, she knew that wasn't my "real" job. She then explained to Esther that I actually pastor a church in Kansas City. I was thankful for the reminder myself, since a lot of days I feel like all I do is cooking, cleaning and laundry! Being an at home caregiver is an incredibly high calling that requires more humility, patience, courage, energy, creativity, and determination than I personally have. I have nothing but respect and appreciation for my wife and all the ladies (and the occasional dad) out there who devote themselves entirely to the ministry of the home.