Alex has been up since 4:30am. Stuffy congestion… again. I did talk to Dr. LePichon yesterday afternoon and we slightly increased one of her medications given first thing in the morning. It’s definitely not a full comfort measure, but it’s been an hour since I gave it and it is a bit better than it has been. As reference, on a typical morning I cannot even hold Alex because her body is so stiff, twisty and wild. I held for 20 or 30 minutes just now and, while she is still tense, she was not out of control. Also, her hair is typically wet with sweat after being up for an hour and right now it is not.
For anyone wondering how much medication she is on… the answer is A LOT. We passed any measure of ‘normal’ medications a long time ago. We are to the point that Dr. LePichon told me that if I am ever questioned at the pharmacy then I should have them call him directly. I am so grateful for him and how he has taken on the cases of our girls so individually. Alex and Emma never fit any sort of ‘normal’ or ‘typical’ mold, but that has never stopped Dr. LePichon from facing the situation head on. For that we are so very grateful.
Last night Drew & I talked about how things are progressing with Alex. Those are hard conversations, but necessary. We do feel the seriousness of her situation and feel like God is preparing our hearts for whatever is ahead. We know that Alex will die young, but the rest is uncertain. It is indescribably scary and we are feeling the weight of it all as she struggles lately. We don’t have a timeline and there is no one that can give it to us. I think it’s one of those things that we aren’t meant to know. So, the only thing I can do is turn to my God and pray the prayer that I have so often prayed. “… living one day at a time, enjoying one moment at a time, accepting hardship as a pathway to peace…”
After such a hard day yesterday, we went to bed super early last night. Once Alex was asleep and tucked in, we went to bed. 8:30pm, y’all. I was exhausted anyway, but with the help of a Benadryl I was fast asleep. It’s a good thing, too, since we’ve all been up since 4:30!
It’s now almost 6am and Drew just left for the office. He often goes in an hour or two early to get extra work done, but today he said he’s hoping to avoid some of the yahoos on the roads. Our neighborhood is still a solid sheet of ice (can’t even see the asphalt) and, from what I hear, so are many of the back roads. Most local school are still closed and we haven’t had a single day about freezing since this all started last Thursday. Today is predicted to be sunnier and slightly above freezing, so hopefully that will melt things off a little bit.
Remember what I told you yesterday? About Drew sugar coating the road conditions when he reports them to me? I was right. I gave a slight consideration to going to Wal-Mart when he got home yesterday, just because I’m a bit stir crazy. He told me that the truck was already in four wheel drive and that I was welcome to go, but that it might be a good idea to wait another day. I listened and stayed put. Let’s face it, I didn’t really want to change out of my sweat pants, anyway.
I’ve done something naughty during this yucky weather. Online shopping. I feel guilty for purchasing so many Christmas gifts from Amazon, but it is so convenient. I’m not usually a huge online shopper, but it was so nice to find so much of what I was looking for in one place. There’s the added bonus of anticipating the shipments. Do you ever get a rush from buying something? (We can talk about the issues with that later.) Well, shopping online is like getting double the pleasure. You get the excitement of finding what you are looking for and then get to be excited all over again when the package arrives. So naughty. I’m a big supporter of shopping local and supporting your community, so giving my money to “The Man” that is Amazon just feels sinful. It is what it is now. I’m very close to being done with Christmas shopping and have very much enjoyed finding just the right things that I had in mind for each person on our list.
I’ll leave you with a funny story…
Yesterday afternoon I was feeling quite grubby and really needed to restart my engine. I decided a shower was the best idea, so I locked the front door, left Alex in charge of the dogs in the living room and hopped into the shower. 90 seconds later I had my hair lathered up with shampoo when I heard the dogs barking. And barking. And barking. I was quite sure that they were barking at someone at the door and went through a mental list of who it could be. Worrying it could be something important, I quickly rinsed off and wrapped myself in a towel. I came walking down the hallway, dripping wet and wrapped in a beach towel, peeked out the peep hole and found no one. I asked Alex if there was someone at the door and she pushed her computer button to say, “No” and then giggled at me. The dogs were sitting in the floor like little angels, giving me the, “What did we do?” look. That’s when I realized that the barking had not been because someone was at the door, but because I left a bag of tortilla chips laying on the couch. The bag was ripped open and there were crumbs everywhere. My guess is that Mac was waist deep in the chip bag, caused a fuss and riled up the other dogs, hence all the barking. Great. By this time it seemed silly to get back in the shower, so I decided that having washed off and washed my hair was as good as it was going to get. Oh yeah, and Alex was still laughing at me. The only thing left to do was put on a fresh pair of sweat pants, so that’s what I did. In an effort to do something for myself, I did blow dry and straighten my hair, so at least my hair looks good this morning.
That incident really deserves a Rule of Life or two. I can’t remember what number I’m on, so I’ll just start making numbers up.
Rule of Life #320
If you are in the shower and hear a commotion, just go ahead and shave your legs. Really, what are you going to do if you get the front door wearing nothing but a beach towel and find somebody really is outside? Nothing. Just finish your shower, get dressed and then go check out the commotion.
Rule of Life #783
If you leave a bag of tortilla chips unattended, the dogs WILL eat them.