For the past week we have been trying to get Caleigh's bloody stool under control. I think we've nipped it. Now we give the ulcer medicine for the next 3 months to aide healing her intestines and we wait and see.
Our pediatrician is trying to find an allergy medicine that is in tablet form and does not contain lactose as a filler. They are have a hard time finding such a thing. Apparently, lactose is a very common filler for medicines. Caleigh doesn't handle the sugary children's liquids. She's been off of liquid medicines for a long time now. We may be headed back to the allergist to ask about other options.
The sulfazalazine is in a compounded liquid form. Since starting it on Friday, Caleigh has been retching quite violently and more than usual. Our pharmacist will be ordering the powder form and making capsules that we will be able to open and mix with pedialtye. We do the same with her multi-vitamin already. Even in compounded suspension form there are fillers that the pharmacist must use. So we are hoping that the straight powder will be less irritating to Caleigh's tummy.
Ever since we woke up last week to blood, I've been in a total funk. It's nothing new really. Throughout Caleigh's entire life I've had ups and downs and I think that is normal. Every time there is a hiccup in our path the adrenaline flows and then things calm down. Reality hits, thoughts race and I'm right back to square one.
I've written some on paper this past week. Thoughts, phrases and fragments of speech. I feel like I'm in a weird place. I answer phone calls, go out with friends, achieve daily tasks with no problems all the while my mind is racing with thoughts and feelings. While these things are running through my mind I want to do nothing but write them down, tell someone. With life to live and Caleigh to tend to, I don't get them out and so the thought cycle continues.
I'm not sure what it is that has hit me so hard this time around. The cycle towards acceptance I suppose. Everyday has something a little off. Today was Caleigh's head control. No matter how we talk about it she has a hard time keeping her head up. She tells me that it is hard for her but that she tries her best. When it's upright, it is tilted to the left. She has momentary mid-line success, but with the constant movement of the dystonia it's very difficult for her to maintain the position.
Today it just got to me. I felt angry about it. I feel terrible because she tries so hard. She can't help it. Caleigh can do SO many things that she never should have been able to do. I don't know why I dwell on specifics. I'm guessing here, but I probably say "hold your head up straight" 50+ times a day. More on days with a lot of therapy. Sitting, standing, in both wheelchairs. We try using the cervical collar, but Caleigh just hangs her head on it choking herself. At least she is free to move around without it. I need to let it go, but there is something in me that wants to fix this one thing for her. If she could hold her head up straight she wouldn't be mistaken for sleeping all the time. If she could hold her head up straight her muscles wouldn't be strained in her neck. If she could hold her head up straight equipment and chairs would be easier. The "if's" are numerous. Why do I want to fix it so badly? Why can't I just accept it?
So I guess I will write my way through this. Who knows how long it will take. I will try to step back for the day to day and be grateful for what we have. We have a brilliant, beautiful little girl who amazes the masses. I need to follow suit.