Fitting that we would end our year with a visit to Vanderbilt for an appointment with genetic counselor.
The past few weeks have been a rollercoaster of emotions and difficult for us to process, let alone summarize.
Our trip to CT went well. They did a lot more work with her electrical circulatory system, along with some cranial work and releasing some tension on her eyes. I continue to be fascinated with how everything works together and how the therapists may mention something they identify with their hands that is consistent with Maggie's big picture, or that it's one more piece that fits with her puzzle. One intriguing thing to learn was that the lower right lung is related to desire to live and thrive, or not (suicidal tendencies, etc.). In Maggie, they felt an exuberance or a real desire to be here. Interesting and encouraging! Many of the therapists also commented on how receptive she is to the therapy and that it all seems made for her and her systems. We would concur!
We also met with a doctor out of New York while we were in CT. She balances the medical field with the alternative modalities. There were a couple of things she mentioned. First of all, she recommended getting a specific evaluation of her nutrient intake to see what she is/isn't processing. She also recommended hyperbaric oxygen chamber as a therapy for Mags. Not knowing much about it, the initial words scared me a bit. Hyperbaric makes me think of barbaric and chamber make me think torture chamber. Not a good combo in my mind. Upon further research though, it could be quite beneficial.
One big thing we noticed since our trip is that her eyes are moving independently of her head. I didn't quite realize that they weren't until we now see how she is looking around much more.
This past month has had reminders that even with the therapy, she is still not ok. It is definitely helping her to function more optimally though.
Unfortunately we have also seen fluttering and jumping of the eyes, which could be seizure related, or the muscles around the eyes just trying to assimilate everything. Seeing them fluttered crushed both of us, as it had been nearly 2 month since we had seen any seizure related activity.
We are also in the process of weaning one of the meds. And, she has outgrown the original dosages from August. So, lots of variables. Oh...and these teeth. She now has her two bottom teeth. She also has been quite congested. She could have picked something up, but I really think it's just related to those stinkin' little toothies. However, all the drainage has led to lots of coughing, gagging, throwing up, etc. Of course it gets worse at night. There have definitely been a few precarious nights where Shawn and I wonder if this is it. Lack of sleep, teething, weakened system all lower her threshold for seizures. Needless to say, over the past week of everyone celebrating the excitement of the season, there have been many sleepless nights and much uncertainty.
So, we all made the haul to Nashville to see the genetic counselor on Monday. Thinking there was going to be a big epiphany, we were quite let down. It seemed to kind of be a waste of a day. They did draw some blood and are sending out for a genetic disorder called Menke's. Before anyone googles it, I'll tell you right now that the prognosis is awful, like death within the first couple of years. It's the one that rocked my world when we were in the hospital the last time. I thought it was sent out already and checked off the list, but nope. So, now we wait about a month to hear about it. The doctor didn't think she was a strong candidate for it, but due to her borderline low copper and and something else levels, they figured we might as well send it off and at least we'll know one way or the other. And, if it's not, our question was...then what? "I'll see you in 6 months". Grr...What's up with that? Kind of like the neuro appointment..."your daughter is probably going to die. See ya in 3 months." Really?!?! Good thing God has bigger and better things in store.
So...we have a neurology appointment and GI follow up coming in mid January. Our plan is to continue with therapy(next trip to CT in Feb), as we keep seeing great progress directly related to that. We'll keep praying for all these little miracles in Maggie and one really big one. We continue to be absolutely blessed by the financial gifts we receive. The gift wrapping done in cooperation between Hal Henard Elementary and our church brought in $1400. Plus, our church is giving the Christmas offering towards Maggie's treatments, at least $3000. And, we get checks all the time. I estimate the cost to be about $5000 per trip to CT. That includes the travel expenses and the therapy. How much a relief it is to know that at this point money is not a limiting factor. God is really teaching me to trust and He definitely provides. Knowing that at least the next trip is covered and having the option of looking into any other options provides a lot of freedom to this already stressed out family. With every generous donation we get and the tears they bring to my eyes, I keep thinking, "if only money could heal her..." Which, in a sense, it is helping tremendously. It helps us make the best possible decision for her without worrying about whether or not we can afford it.
Our start to 2013 has already been eventful. Just after midnight, while feeing her, she chomped down with those new teeth. What a great start to the new year Maggie! But we put them to work with her introduction into solid foods. First up was avocado.
This post is a three day work in progress. Too much keeps happening. Last night and this morning we had quite the uncomfortable little girl. She's a tough little bugger with all she's been through, and real tears was quite the change. With a low-grade fever and this discomfort, we decided it was time to take her in. Low and behold, she has an ear infection in one ear. We have spent most of the day snuggling.
And so the marathon continues...