Last night I took out some of my frustrations over what Virginia has been going through on Wills. He wasn't being terrible, just a little wild, and I had asked him to stop a few times. I ended up losing my temper, but it was definitely misplaced anger. After I had tucked him in and gone through our bed time routine, I apologized. "Buddy, I'm sorry I got mad at you when we were downstairs..." I was trying to decide if I should explain why I was so upset, but before I could say anything else, Wills beat me to the punch. "That's ok, Mommy," he said. "It makes me really sad when Sissy cries, too."
Sometimes I hesitate to share some of what Virginia goes through because I want to make sure people understand that the struggles she has are not the whole picture. There are lots of happy moments, too. But the physical consequences of what happened to her are tremendous- almost too many things to list. Last night I told Findley that I honestly don't know how Virginia can live in the midst of everything she has to endure. We are praying for mercy and for the alleviation of her suffering.
*She has been having serious pain in her jaw since November. It took us a long time to figure out what was going on- at first we thought she had a cavity or was accidentally biting her tongue. Actually she has some TMJ and her jaw is essentially popping out of place and getting stuck for about ten seconds. (all due to the fact that her face muscles are weak and don't hold her jaw in place like they should and because of the way she opens her mouth really widely all the time). When it happens, she cries out in pain and her eyes tear up. It is really, really awful. It makes eating almost impossible. On a good day, it happens 4 times. On a bad day, it happens about 50. We have started some myofascial release (think deep massage for the face) and are seeing an oral surgeon on May 27.
*We are in the process of getting a new communication system and computer system that Virginia will control with her eyes. This is very cutting edge technology and it is proving very difficult to get a system to try so that we can be sure we want to purchase it. The three times she has used a loner one at UCP, she has done great. Pray we get one soon (specifically a Tobii system) and that she can use it beyond my wildest imagination. I want her to start writing my blog posts! (Tobii is a European company new to the US and they don't have enough reps to do all the training, etc. Any readers know how to get a rep and a system to Birmingham for Virginia?)
*She seems to be a little on edge and not her usual happy self. Her muscles are tighter and she pushes back a lot; some of her muscle tone issues are causing her pain. We have shied away from medicine to help her muscle tone in the past because the side effect is sleepiness. Virginia is a smart girl and I don't want her to be zoned out all day. But it is becoming more and more obvious to us that she is hurting and we need to try something. If her body could relax a little bit, she would feel so much better. I think it would really help with her jaw and also with her ability use her eyes to operate her communication device. Pray that we find the right medicine and that it helps without making her tired. (Well, able to sleep at night would be a good side effect, but not sleepy during the day).
*She is not sleeping well. She never sleeps great, but we are in a very bad cycle. Findley and I are so tired and the nights are so bad I don't even know how many times she wakes up and how long she stays up. It is all a blur.
*The issue of a feeding tube keeps raring its head. Pray for clarity.
*She has been congested at night for about 4 months. It is terrible. ENT says her adenoids need to come out. I feel like adenoids are just one piece of the puzzle and would like all the answers before we venture down that road. We see an allergist on Tuesday.
*She has essentially been sick with a terrible cough and cold since March 22. She got well for a few days in the middle, but is so worn down. We did a chest xray today to rule out pneumonia and tried a breathing treatment. Virginia is fragile enough anyway, but being sick just completely wipes her out. Please pray she will feel better soon.
Thanks for sticking with me for all those requests. People always ask how they can pray, so there you go. Thank you, thank you!