I suppose that I do have some info for everyone. As Shawn says, I have earned my MD over the course of the last few months. And, I can surely share the things God has revealed through this all (may not have time/room, or enough gathered thoughts for all that)
We are home and have been for a few weeks now. Maggie is on 5 medicines, one of which is Pepcid for her little tummy to help deal with the others. She takes Keppra and Trileptal at 7 and 7, and then Clonazepam and Zonisamide at 11 and 11. Those around us notice the traveling pharmacy. Luckily we have been able to stay on top of them all fairly well. Hopefully we will be able to reduce these meds some. While in the hospital, we found she was not that responsive to the sodium channel drugs (trileptal, and another quick stop drug she was given at the hospital) The trileptal could be reducing some of the seizure activity though, so they wanted to wait for things to settle out a bit before we wean her off it. Hopefully we might be able to get stop it at some point.
Overall, Maggie has seemed much more "with it" over the past few weeks and we have seen many more smiles and coos. We definitely think the seizures were more detrimental than the current meds she is on and have seen some good progress. I do believe she is continuing to have some episodes, very slight in comparison to before and barely noticeable, but nonetheless, episodes. Though they are much less severe, the question is more about what we may not be seeing. While at Vanderbilt, we found out she was having many subclinical seizures (those only identifiable by being hooked up to the EEG with no visible response/movements). Next week we return to Vandy for a follow up EEG and appt with our neurologist. We'll see what that appointment brings!
Also, there are many ancillary issues that go along with everything. Prior to going to the hospital, there were things I had noticed, but was trying to give her a little more time before I got too concerned. Through all this, these issues have been confirmed and we are working towards addressing them. None of them are major, just things for us to be proactive with. I am continually reminded that the body is a unit. I know the neurologists are good and doing what they are supposed to, but I get so frustrated because the brain is one part of her body. The questions we keep tossing around are "Is it the seizures causing other things, or is there something causing the seizures that is also causing other thing? Are the seizures just a symptom of blah blah blah" Regardless, the body is a unit. The following scriptures and quote are constantly in my thoughts. Though the scripture is an illustration for the body of Christ/the church, the literal is so true too.
For as in one body we have many members, and not all the members have the same function, so we, who are many, are one body in Christ, and individually we are members one of another. Romans 12:4-5
Every member serves the whole body, contributing either to its health or to its ruin, for we are members of one body not only when we want to be, but in our whole existence. This is not a theory, but a spiritual reality that is often experienced in the Christian community with shocking clarity, sometimes destructively and sometimes beneficially. (40-Day Journey with Dietrich Bonhoeffer)
Unity and Diversity in the Body
12 Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ. 13 For we were all baptized by[c] one Spirit so as to form one body—whether Jews or Gentiles, slave or free—and we were all given the one Spirit to drink. 14 Even so the body is not made up of one part but of many.
15 Now if the foot should say, “Because I am not a hand, I do not belong to the body,” it would not for that reason stop being part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” it would not for that reason stop being part of the body. 17 If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.
21 The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” 22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, 25 so that there should be no division in the body, but that its parts should have equal concern for each other. 26 If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. 1 Corinthians 12:12-26
Of course the different areas of her body would affect one another. We did go to a chiropractor, he did end up adjusting her (more on that below). I am in complete agreement that her back is out of whack and could be the root of somethings. I did end up getting her to a PT in Knoxville that does Integrative Manual Therapy. I know it will sound whack to many of you, but I felt he was much more in tune with her body as a whole than any other professional thus far. Just by feeling different regions of her body, he was able to sense restrictions in her different systems (musculoskeletal, adrenal, lymphatic, nervous, cardiovascular, intestinal, etc.). Based on my limited understanding (could all be incorrect) the best way for me to understand it is like a garden hose. Our bodies are made up mostly of fluid and all these fluids have a rhythm through the various systems. Just like you would be able to identify if there was a kink in a garden hose and about how far back it is, he was able to identify where these restrictions were in her various systems. He told me that the body really is self healing, but by making contact with the different points, it prompts the body to increase the motility and integrity of each of the systems (act and respond as it should). He worked to help try to release much of the shock on her body. I know. I know. It sounds like I am speaking crazy now, but by watching her response to the therapy and her ability to relax her systems a little more was huge. A big thing for our family is to try to reduce gluten and sugars (digestive tract). Since she is breastfed, that means my diet, and while taking this all in, I realized that if anything, digestive troubles she could have got from Daddy-O. And, the entire diet would make sense since aggravated intestines can affect lowerback, etc. So part of this journey is a big diet change for all of us. (Shawn and I are used to eating whatever we want whenever we want...boo..who). I am not confident that our big diet change or this therapy will be able to completely diminish the seizures, but I think it could definitely play a role in all of our whole body health and will definitely help us be in tune and work on her different systems. And, it cannot hurt anything. Basically, he was able to identify and work with her, simply by laying hands on her and making contact with the various points. Reminded me of the Biblical practice of the elders coming and laying of hands on the sick. Hmm...all makes sense.
They have identified the seizures as starting in her occipital lobe (aka vision center). We have an appt with an ophthalmologist next week to check all her vision out. Since the seizures have been more under control, I would say we have seen improvement in this area for sure. I am confident she can see light differences (she has always enjoyed lights) and people as blobs or figures (may just be the contrast in light/color). However, she is not studying facial features or tracking at all really. I think this has limited some of her engagement and other interactions. As I was telling my grandma, for her not being super engaged or interactive with us, her other senses must step up, because we definitely are connected with her. Her smiles and coos, though not directly at us, tell us she is delighted in something, and this Momma and Daddy get much joy from that!
She lacks neck control and overall is quite "floppy". We are working on this with tummy time and supported sits to try to strengthen it. We are hopeful that as the other ducks get in a line, we will continue to make progress in this area.
We are working on getting Early Interventionist on board as well. They basically will help us keep abreast with all the therapies, developmental issues, and document so we are ahead of the game if she will continue to need special services down the road. Most likely we will be getting OT involved too.
We did see a chiropractor, for what I thought was going to be gentle manipulation. Everything in me sank when he did an actual adjustment. I go back and forth on my thoughts of this and it is completely my issue, not the practice itself. I definitely think she has some misalignment issues (very likely could have been brought on by breech presentation and C-section delivery-more thoughts on this at a later time.) The jury is still out on following up with this.
Our constant prayer is for discernment, that God will reveal to us when things are severe enough for us to act, and how to proceed with treatment, decisions, when to push the doctors, when to find new doctors, when to shut up and listen, etc....oh and when to be documenting, watching, etc, and when to just be mommy and snuggle the sweet little thing!
I know there is so much else for me to share about this journey, and we will continue to as we walk it. We REALLY appreciate all the prayers, encouragement, and support. I often get the comment, "I don't know how you do it." The quick answer that I want to reach for is "me either.", but that is not true. I do know how we do it. Our strength is coming completely from Christ. On our own, we would be nothing. We would crumble and be constantly defeated. Now, don't get me wrong, it's not all easy and sunshiny days, but we know the One that is carrying us through this journey, just like He does through all of our daily struggles any other time. If through this current trial in our life, others come to know Christ, so be it...let it be part of our testimony. Christ took on much greater suffering for us to have a personal relationship with him.
When we lay Maggie down to sleep we always sing "This Little Light of Mine." I adapt one of the verses to This little Maggie of Mine, I'm gonna let you shine. It is our prayer that she is a light from Christ for all the world and her light won't be hid or blown out. Her super sweet little self already shines so brightly!