When we came home for the hospital from our stay in August, I ended up slightly depressed, overwhelmed by all the normal house duties (which were a little out of control), feeling completely helpless with this sweet baby girl. I would know things were not right, but I didn't have a clue of who to go to or what to do about it. I just was helpless and slightly depressed (just being able talk about it with others and trying to be proactive in dealing with it helped a ton)
This time coming home, even though I was very discouraged leaving with a puking baby, with no idea what was causing it, I have been very motivated and empowered. I am accepting that I am the one that has to keep track of all the pieces and get what we need for little lady.
We have written up a letter requesting recommendations and help to send out to various places. Really what we are looking for is a professional that can help bridge the gap between traditional Western medicine and "alternative" methods. It's what I have found to be referred to as Integrative Medicine. Trouble is that we don't just need Integrative Medicine, but someone that is particularly highly skilled in neurology and pediatrics in particular. We need the research and studies, but we also need doctors looking at Magdalyn Selmeski, because there is only one and there will never again be a Maggie Selmeski. We've included a CD with pictures and videos of some of the things we have captured, as well as details of this journey, and an exhaustive list of concerns, abnormalities, and delays. We'll see if we get any response with those.
Last time when we would see people out and about, everyone would ask...how's Maggie doing? To which I never knew how to reply. Now everyone asks, "how are YOU doing?" Amazingly, I am holding up quite well. I've come to realize that we are in for a marathon instead of a sprint, so the bursts of energy are good and I'll take them when I can, but there will also be times we'll need to slow to a walk, maybe even a crawl, in order to keep moving. But, the goal is what has to be in sight, and that is providing for Maggie in the best possible way we can!
We head back to Nashville today for a neurology follow-up. Who knows what all will come from this visit, but I'm loaded with some questions for clarification from our last stay. As a side note, sometimes I get a little upset when I read through her medical records and find contradictions to what I said or what was really happening. I don't expect the doctors to be perfect, and I'm not really mad, just a little frustrated. This time around, it was in the GI notes that said the vomiting wasn't forceful. No wonder they didn't do anything. The convulsing stomach leading up to and continuing after the projectile seems a little forceful to me. I did get it a lot where doctors would refer to it as spit up or reflux, and let me tell you, after 3 straight weeks of experiencing the force, it was not GERD. But for whatever reason, it has stopped. My sister was praying specifically that the puking would just stop. So, we can chalk this one (as all things should be) up to God. I am working to gradually reintroduce some foods to see if it's allergies. All I know is that her appetite came back with a vengeance-she seems to just want to eat and eat and eat!
I did find and had great success with a gluten free homemade muffin recipe, and we've been enjoying salads and a lot of rice pasta. But I figure each new recipe we add to the repertoire is a huge blessing! In no time we will have all kinds of variety. I really think my diet improvements are contributing to my energy and motivation as well. Yippee!
Other questions we get a lot is "What can we do to help? How are you doing financially?" I've taken on Shawn's response, "well...things are usually pretty tight for us." We are hanging in there. There is still outstanding debt from an individual that would be really nice if that was actually being repaid. Also, we are close to the house in Iowa being sold. This time around, the buyer has been a pain, but if we do actually end of closing (Nov. 16th), that would be a big expense off our plate. We have truly appreciated the various gifts and contributions to help us out. But, because we are in for a marathon and really are just treading water right now, I think there will be a point that we'll need help creating fundraisers of the sort to try to help fund research for whatever, acquiring adaptive equipment (if needed), etc. So, our general answer is, "we are ok right now, but will probably be seeking help at some point!"
We still wait on the the genetic tests. As I researched one of the tests, I saw Maggie in a lot of the symptoms (though there is a lot of overlap in a lot of the disorders), but it's one I think is most strongly a possibility. At any rate, I was able to find another Momma a few years ahead of us. Her little Harper is 2. It has been great to be in contact with Harper's Mom, because, even if Maggie doesn't have the same thing, they can be a great resource (as she already has) for suggesting therapies and different avenues to potentially pursue or avoid. We have been messaging back and forth a ton already and our new friends have already been such a blessing!
I think this covers the bases for now. Time to get ready to get on the road to Nashville. (Usually when people are on the road to Nashville, there are slightly more exciting circumstances :) )