Roller-coaster weeks

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.

Over the holidays, I had a big desire to be "normal". The past few years we have seemed to be all over the place, so I have missed decorating and all. We didn't end up getting the tree until 3 days before Christmas (which landed us a $5 deal for a real tree-woohoo!). I was able to decorate and we were able to entertain others, by having our small group over. Plus, we had the Selmeski Christmas here. It felt nice to do what everyone else does, even if it was for a little bit. It has also been nice with the uncles and our niece and nephew around. They loved on sweet baby girl.

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.

She also rolled over last week. We were both in the kitchen we all or the sudden she was quiet from her squeals. We looked over to find her on her back. I put her back on her tummy and right away she went the other direction. Such a big girl!!

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...

Lots to mention

7 months old today!! And a tooth coming in!! This tooth is proof that my little girl is growing up. Maggie has been a little vocal about this tooth. Momma's not so thrilled about the idea of teeth either. :)

Many little elves were busy today wrapping presents as a fundraiser for sweet little bug. The "Wrapped in Love" event had a fairly steady flow of gifts coming through. Maggie and I were even able to swing by for a little visit. It was wonderful to see a ton of special people in our lives all together, working to help us out. What a tremendous blessing these elves are!! A huge thank you to all of you!

Our trip to Iowa was good. It was quick, but we did get to spend some time with most of our loved ones. This trip didn't allow for visiting many friends. We did have good time with grandmas and grandpas and aunts and uncles. Plus, we were able to swing by Heritage for sweet moments with teacher friends!
The reason for the trip...Shawn's doctor appointment. Basically, they confirmed there are residual issues, in his lower back and neck from the fall. One interesting thing she found was that Shawn doesn't have any sensation on the back side of his upper right arm. Based on what she found, he will probably be getting an appointment with a neurosurgeon for an evaluation. So, that saga continues.

While in Iowa, we "tried" to get the bank account setup to be Maggie's account. More hoops to jump through with that because I didn't have her SS card with us. I was quite frustrated walking out of there, because every little step, that shouldn't be that big of deal, seems to be such a hassle amidst all we are dealing with. But, we did have a glimpse of God in the middle of it all, reminding us that He does have us in His hands. I had a handful of checks from people with us that I needed to cash and wanted to use to payoff the initial payment for this round of treatment. When we totaled up all the checks, it was exactly $2 short of the needed payment. Really?! He is taking care of us!

Point of clarification about what's covered for Maggie medically. I want to make sure we are not misleading at all. As of now, insurance has covered all our hospital stays and tests, all but a few prescriptions (depending which pharmacy we have them filled at), and therapy that is in state (occupational, physical, and speech-coming soon). However, our trips to Connecticut are out of pocket. This is the intensive therapy that has proven to be the most beneficial of anything for her. Luckily for us though, our physical therapist (covered by insurance) performs the same Integrative Manual Therapy. Piotr is able to continue her care plan with our visits to Knoxville twice a week. The intensives allow for concentrated work to make more progress. (And hopefully continue to get her out of the woods as far as being "critical").

And so we begin another journey to Connecticut. This time Nana Selmeski is escorting Mags and me. We are driving as we speak and she'll have therapy Monday-Wednesday. We're excited to see what progress she makes this time.

And finally, my sister updated some bows on the site. Order by Monday, December 17th to get them in time for Christmas. There will also be more added to Etsy site soon.

On our way to Iowa

We are loaded up and on our way to Iowa. My sister and her family stayed with us and helped me do a thorough cleaning of the house. What a great help they've been!
Now we are taking them back to Iowa. Plus Shawn has a doctor's appointment. Some of you may remember Shawn's work injury from 2 years ago. For those of you that don't know, he fell about 6-7 feet off a ladder. He went to therapy for it for a while and got other opinions when we moved down here, but the most recent doctor basically told him he is going to have to deal with it and manage it with pain killers. Not cool! His back is just not the same. He is very limited it what he can do and where his pain threshold is. Those around us may have noticed that I am usually the pack mule and am always the one to carry Mags' carseat. This is intentional as to not stress his back more. So, this trip is for him to be evaluated for a maximum impairment rating to see about some sort of settlement. We'll see how this all works out.
We debated whether or not Maggie and I should go back to Iowa with them or not. But, in the end, we decided that if we didn't come back, that would make for one depressed momma through the Christmas season, and that wouldn't be good for any of us!
This past week, Maggie had been backed up off and on a little more. Last Tuesday was an exceptionally off day. We couldn't quite figure it out. Her prescription refill was a new supplier. Hmm?? I thought through my diet?? Hydration? Nothing seemed to make sense. Then I asked my sister, "Is it a full moon by any chance tonight?". She looked out the window and and told me that it looked pretty close if not. AH HA! I went to look it up to confirm and then frantically searched through our documentation. This was the third month in a row with a full moon being a bad day! One of those being our last ER visit 2 months ago. Last month my suspicion was up, but this time confirmed my theory that full moons exaggerate things with her. I am somewhat relieved to identify this, because it means we will have bad days, but they will pass. It isn't automatic downhill spiral.
What we do know is when her colon gets backed up and she doesn't have any poppies for a while, that could be bad news for us. This week we've had a few days of concern, but hopefully things are moving a little better. Most parents fight over who "has" to change the poopie diaper. We pray for poopie diapers when we get to the point of Operation Poopie Pants, and whoever gets the poppies is the winner! I know...way to much info, but hey, that's our life!

In other news, we have been extremely overwhelmed by the financial support we have been receiving. We are constantly receiving generous gifts. I'm shocked with how many have shared the website and the orders my sister has been getting. Also, without me really knowing much of anything, I found out about a Wrapped with Love gift wrapping event to help raise funds for the Magster. It was kind of surreal reading and hearing details about it and realizing that it's for OUR daughter. For those in Greeneville, it will be Saturday afternoon at Hal Henard Elementary. Check out www.fccgreeneville.com for more info. Another cool thing is I just got a message from a friend that said her grandma would like to sell wristbands to her Bingo crew to help raise money and support for Mags.
If only money could buy her complete restoration! Which in a sense, the more opportunities for the intensive therapies, the more optimally she will be able to function.
Which, we have our next trip to Connecticut set for December 17-19. It's looking like Nana and Grandpa will be chauffeuring us this time.

So many blessings all around, remind me that this is what the body of Christ looks like in action.

Miracle 4 Maggie bracelets and bows

www.miracle4maggie.com

My family and some of their friends have been working diligently on some things for Maggie. My sister created a website to help streamline information and donations for Maggie's treatments. She also has enlisted some helpers and has been busy making hair bows and opened an Etsy store as an additional fundraiser. In light of CyberMonday, if you might know of any little girls that could use a hair bow for Christmas, or someone that would want a decorative brooch, check it out. They've made some pretty cute stuff.
My dad had a bunch of prayer bands and info cards made up as reminders for people to be praying. Zebra print ribbons are for rare disease/disorder awareness...we thought that was kind of fitting for our "rare" little lady. The purple print is for epilepsy awareness. We know that the absolute best recovery treatment for Mags is prayer! Next time you see us or our family let us know if you want a prayer band reminder. We'll be handing them out.
We have been overwhelmed by the support, both prayers and financially. We are continually receiving generous checks. We cannot even begin to express the burden that is lifted as we try to make the best decisions for Maggie's care. Even more so though, our hearts our warmed tremendously when we hear people everywhere are praying for her continuously. The prayers of little ones are especially sweet when momma's relay to us that their kiddos pray every day for Maggie! How precious to this momma! Keep the prayers coming...our sweet girl has been doing good! She continues to make good strides each day.

Good (and not-so-good) distractions

Things have been going fairly well with the little lady.  Then again, I've had a few distractions (named Ava, Myka, and Ella :)) that have gotten my mind off all our issues for a little bit.  My older sister and her family have been here and are staying until next week when we head back to Iowa.  My dad and youngest sister were here over Thanksgiving as well.  It has been such a blessing having them all around.  Maggie definitely lit up to my dad's voice.  Then again, my dad's voice carries so much (huh, where do I get that from?!?!) I'm surprised Maggie can't hear it from Iowa still.

She has been thriving with the little girls around too.  And, the best part is that my sister has been helping me and motivating me to get the house deep cleaned!!  I can't wait for us to get Christmas decorations out this year, but the house has been in serious need of attention first.  Brooke has also helped navigate some cooking ideas.  Works kind of nice only cooking every other night.  And, Tyler has been helping Shawn with some of the things on my Honey Do list!!  What blessings all around.
The not so good distractions...in the midst of the crazy stop and go traffic in Knoxville on Wednesday, I managed to not get stopped quite fast enough and put the Honda out of commission for good.  The brakes need a bit too much attention after being slammed on so quickly.  I was close to clearing the car in front of me as I tried to get to the left, but didn't quite make it.  Thank goodness that otherwise it wasn't that bad and nobody was hurt.  Maggie slept right through it.  Just in case, I implemented some of the neuro-facial processing that I have acquired.  Dad and Audrey were with me by that point too, which was good for me to hold it together.  Surprisingly, I was quite emotionless.  Mostly because it's just one more thing.  Not surprising for our life at this point.  The family in the car in front of us were very pleasant and gracious.
And then Thursday came, and I managed to throw our gluten-free, dairy-free, GMO free, sugar-free, beautiful hard loved creation of a pie all over the floor.  We had to laugh, otherwise I would have cried.  (that's one of my family's mantras for life)  Not much of what was coming out of the kitchen from my sister and myself was turning out so fabulous, and the pie was one of the best things we had going for us.  We couldn't bring ourselves to clean it up, so we left it there all over the floor for a few hours.  Everyone got a few laughs at my expense and stupidity.

Needless-to-say, Maggie hasn't quite had all my undivided attention.  The positive is that she has definitely been getting attention!!

Connecticut trip and ramblings

So, it has been brought to my attention that I need to fill y'all in about therapy in CT.
It all went very well. I'll just throw this out there first...the debatable component is whether or not professionals can use their hands to diagnose. I think of it as the same way that Shawn uses his ears to assess the audio at a job and then adjust accordingly, or the way a doctor uses his eyes to read an MRI. Different trainings, different tools, but we have found it all to be reliable!
When we first got there, we went over Maggie's history. At 6 months it's complicated and takes forever. By the time she is 16, I might as well make day long appointments just to go over history. They also assessed her functionally, holding her head up, tone, reactions, etc. Then a therapist did the mapping. By touching different locations as part of different systems, she was able to identify which systems needed attention. And then she was able to identify the priorities based on these rhythms. Seizure activity protocol did come up as most important, which just because someone has seizures, that doesn't always mean that is the most important thing to address. I really think timing was perfect. I know the work Piotr did with Mags and her colon, specifically her sigmoid, prepared her to be able to work on other things. So, they spent the majority of the first day going through seizure protocol. Other things on her list were ECS ( electrical circulatory system), heart, eyes, limbic system, liver, spleen, and a few more- can't remember the rest right now. This visit they worked on the top 3, which were all big things.
Now, the things they identify and work on are like fine tuning a piano to get it to operate optimally. And we walked away with the overall idea that we need to lighten the load on her body any way we can. Hence the reduction of known foods/proteins that can aggravate the system. They did use the term fragile for her. I prefer when one of the therapists said delicate.
Handle with care is still essential. Basically, try to keep her in a bubble to some degree to let her body try to recover and repair. And it's ok to go outside the bubble some, but for brief times. I needed to know that, because it flies in the face of my general theory for kids-exposure to experiences and life doesn't stop just because there are little ones around. Which with her, my theories on kiddos are constantly evolving. We already hang at home more than I would have expected. Well, maybe not that much given all the appointments, but actually going out and doing stuff, I guess. Looking back, yep, we took our bubble child to concerts (there's only 1 or 2 of all we went to in her first month of life that I really think would have overloaded her a bit.). And then there is RAGBRAI, a full experience in and of itself for anyone. Nothing we can do about that now though!
So, back to the therapy. In terms of biomechanics, the one therapist also identified that she has a descended sacrum. Here is a concise article I found describing it and how it all relates in lay terms.
http://www.maryjaneporter.ca/index.php?option=com_content&view=article&id=72&Itemid=66
In a nutshell, her hips are scrunched up on the spine. Her sacrum is also pulling down to the left as well. As I originally presumed, her breech position definitely could have contributed to this. With this pulling down, they noticed most things on her left side are pulling down a bit, particularly the heart. Now, let me clarify again. It's all the fine tuning. It's not like she has a glaring heart issue, but even the subtlest things can have an impact on overall health. If her body has to take just a bit more effort for this or that here and there, then it gets to where solely surviving becomes crucial. This also affects the sheath dura encasing the spinal cord and brain. Visual nerves as well. (Which travel all the way to the sacrum and I think someone even said to your feet-not sure on that one though). The founders of this IMT actually worked at Upledger together, the cranial sacral therapy I was originally adamant about trying to get while at Vanderbilt.
Ok, I just got completely distracted researching cranial nerves and then the different Chinese meridians and what foods impact them. It is phenomenal to me how our bodies are so interconnected. And how The Holy Spirit leads me in making connections and putting pieces together. As I research and have my "ahh...hmm.. that makes sense...no wonder this is affected" moments, it reassures me when we are going down a particular path. Sorry for the detour there.
Other things they worked on...there was some restriction/tightness with her carotid artery, causing her to be protective with her neck to the right. One therapist, also stuck his finger into her mouth and did some intercranial release.
The last day they went through all the supplements for us. They actual test things against us. I knew about the whole "testing" going into this, and I have to admit, this is where I've been a little skeptical. Simply by holding the supplement, still in the container, up to each of us, they could tell if our body agreed with it or didn't like it. They feel the lymphatic rhythm (I think) gets slower or faster. Ok, so she was checking them on me and Maggie and I was just watching. Without saying anything, I noticed that the hair on my arm went up against one of the bottles. That was one she said didn't test well on my body. Still suspicion, I kept watching and the next time the hair on my arm went up, I suspected she was going to say no. Sure enough that one was one I didn't need either. She was feeling the pulse, not watching my hair. That was just a way to confirm that I could trust the testing. We also had them test Maggie's meds to see which ones we should aim to get away from first based on how they tested. One was completely fine. One was so-so, not really bad, but not really needed. Then one was not good and one was really not good. Funny thing is, this is exactly how I would have ranked them in ones I would like to get out of her system. The one that was good is one that I never really have had any issues with giving her-probably will be one she is on for a while. Granted, they are not neurologists and don't have concrete results for that, so it's not a reason in and of itself to just up and stop those meds-that would be crazy! But gives us the direction to aim for. There doesn't seem to be a real concrete reason in the neuro world why one med over another and they have told me it's just the possibility of this or that med contributing to x% of seizure control. With the whole "testing" I just think we completely underestimate the depth to how God created us and how extremely complex and intuitive our bodies are.
So, the supplements...I said to Shawn, "what's another $100-150 or so, we should probably go ahead with them if they recommend they will be beneficial in restoring everything for her". How naive was I...I went to check out with them and $650 later... Yowzers! I was a little pale after that. :) I really do think they will aid in immunity and digestion, etc. And, since she solely gets breast milk at this point, I take the supplements, so really, it's a 2 for one special! And, I think most will last quite a while. I figure even if we just take them to get her over this hump of being fragile, it's surely worth it.
Other things we learned:
All of the therapists there are gluten free because they realize the pro-inflammatory nature of it and the auto immune issues that go along with it. Also, sugars, along with lots of other junk, overtax our bodies and are essentially a neurotoxin. They felt very strongly about diet and the overall integrity of the body.
We were reminded that normal and optimal are two different things. Many new mommy websites would say if a baby poos at least every other day or so, that is fine. Maggie literally had at least 4-5 poopy diapers each day while we were there. She was getting rid of all the waste and toxins in her body. And to imagine that stock piling for a day or two and it being considered "normal" is slightly disturbing. It comes as no surprise that overall health of children and people in general is declining as we constantly redefine what "normal" is. If we truly believe that our bodies are a temple, as God's Word says, then we should be striving for optimal health.
Overall, it was a little new age-y, which in and of itself I was not real thrilled with, but, as Carla said, it's all in where you give the credit. It was an opportunity to share our faith a bit. And, it makes me even more grateful and appreciative that our primary therapist is a Christian and we are entrusting Maggie's well being into his hands. One more side note that made me laugh....they had a booklet with various elimination diets, ex. dairy, sugars, alcohol, T.V., talking (Shawn thought this would be good for me!). It was explained to us that doing an elimination diet from something you think you need or crave helps to rebalance your limbic system. The booklet said on the front-a NEW healthcare something or other. Doesn't sound so new to me. Sounds kind of like a fast! And even though the primary purpose of a fast is spiritual, it amazes me that there are clearly physical benefits to it too. God is so multidimensional and always for us.
I'll finally end with the improvements we are seeing already:
She's moving her head from left to right much more.
Within 2 hours of heading towards home, she started to cry in the back. I looked at Shawn, "those are new sounds for her!" She is adding to her vocabulary.
Her hands are more open vs. a clenched fist.
When she wakes up, she pulls her hands towards her face and actually rubs her eyes!
She's bringing her fist to her mouth much more!
And overall, she just seems much more "withit"!

I said that was it...just kidding. What do we do from here?!
Piotr will continue to see her 2 times/week. We have about 72 hours worth of homework ( can go quicker with more hands). And they want to see us up there again in a month. I asked about going to one of their center branches in Atlanta, but they said they are not ready to give her up yet, given her still delicate state.
Our last hour of therapy was with one of our favorites. As I was talking with her, I would get teary eyed at various times. When Shawn looked at me and asked why I was crying, I told him, "money". But there was a lot going on for me:
1) I did just spend $600 on supplements and I knew this next visit was going to be another big expense to pull off
2) I had already seen they had helped her so much, I didn't want to leave without her completely "fixed" (which may not be)
3) and overall, fear was just creeping in with how are we going to...? What if...? Yadda yadda yadda
It's amazing how Satan tries to get a foothold wherever he can (and sadly, finances usually are a big hurdle). But we know that God provides every step of the way and he will take care of our needs!
Oh yeah...our house in Iowa sold on Friday! We get to wipe our hands clean of that.
Crazy week all around!

Getting to Hartford

Synopsis of our trip...(though it probably won't seem so condensed)
Just after I posted, we did stop at IKEA. I went in shopping with Mags in the sling. I was trying to be as quick as possible, but, yes, we took ample time to get through per the normal "experience". Maggie got a bit fussy partially through, but then fell asleep. I had been wondering about additional stressors, and I noticed this time that once she couldn't deal with it any more, she just shut down and slept. She did sleep really well on me.
Interesting...she goes into protective mode. I'm now beginning to refer to things as toxins (or overstimulation) that she has trouble processing, or protective mode, when she shuts down to be able to do the most necessary functions. The balance is providing experiences and trying to prompt her to process stuff without overwhelming her systems. Through discussion with one of the therapists this week, in her current state, she probably does need to be in a bubble for the most part and can definitely come out of the bubble, but in little doses here and there.
That isn't really the route I expected to go down with bringing up the IKEA trip. What I was trying to say is...when we finally left Paramus, NJ, we got stuck in some traffic, and then....we watched the temperature gage on the Honda (aka NinjaRocket) climb and climb and climb. A few weeks back we were out of coolant and had been keeping our eye on it, but I haven't really had and issue as of late. Shawn was able to pull over and pour some coolant in, only for it to be puked out everywhere-Lovely! Of course, in typical Selmeski fashion....we found ourselves dealing with car troubles. Then again, why wouldn't we?! However, being on the side of the road in the Midwest or the the South is a bit different then in the middle of traffic in Jersey when auto shops are close to closing up on a Saturday. We began trying to hop along. Turning engine off while sitting, and turning it back on to go 50 feet. As the gage climbed all the way into the red, Shawn began cussing at the car, Maggie was cooing in her seat happy as could be, and I sat, trying to be as quiet as possible. We did make it to a Midas shop. Not good news. Head gasket failure is what they had to say. It was looking like we would be laying our beloved to rest there. Oh crap...we began exploring all kinds of options. Taxi to Newark then rent a car. Bus. Hotel. Anything. None of the options were very viable. Expense and a car full of stuff and we couldn't just abandon the Honda. Hmm...
At about that point, I talked with my sister for a bit, to have her look for bus rates better. When I told her about the predicament, her response, "well crap, I even prayed that satan wouldn't get a foothold with mechanical problems". I think she knows us just a little bit, and that pretty much sums up that experience. (Even though Shawn blames it all on me having to stop at IKEA).
Shawn ended up having the brilliant idea of pouring some block sealant in. The guys in the shop felt bad for our sob story of on our way to get therapy for our daughter. They found some of the manager's personal stash in the back. Also, the older couple that I was chatting with inside offered the gentleman's coat for the baby. So much for those cold Jersey folks. :)
The sealant worked and we got moving a little apprehensively. I think Brooke may have been fervently praying for the situation too. Our goal was White Plains to catch a bus to Hartford possibly, but we were moving so well we decided to see how far we could go.
Since it was doing ok, we swung through Shawn's hometown of Pleasantville, saw Grandpa Frank's old body shop, the high school, and the home he grew up in. We even spoke with the current homeowner for a bit. It was great to see where he grew up, but a bummer that it was so dark.
Finally, we did make it to the hotel outside of Hartford. We were all ready to crash!

I guess we are long overdue for an update. We have just been treading water lately. She was making lots of progress for a few weeks there. The past week or so she has seemed a little more "off". (Possible seizure activity, but not really sure). I've had trouble getting her to take good naps during the day, which in turn makes her more susceptible to seizures, which causes sleep disturbances, which doesn't allow for good sleep, which allows for more seizure activity, etc.... A vicious cycle that we have trouble getting out of. And makes for a sassy little girl and a checked out momma. I notice myself more blah too. I know my mood affects her, but is it the chicken or the egg first...Her being off, I become more down, or other way around. One more thing to document and observe. She hasn't been awful by any means, just a little more "off".
Along the lines of documenting, I've been trying to track as much as I can and look for trends. As of late, I'm trying to keep my eye on preservatives. And drops in barometric pressure. And my hydration, which in turn is her hydration. I know, crazy, crazy, crazy, but I know that they are all pieces and at some point we will know how her puzzle goes together a little more.
We did just hear back from the neurologist that none of her test thus far have provided any answers. The exome sequencing is looking like a good possibility, he just has to figure out who will pay for it. It is a large scale gene sequencing test that could identify which gene is disrupted. But, it is an expensive test and the cutting edge technology is ahead of insurance. So, the sell to insurance is we may be able to avoid random stabs in the dark for various genetic tests and the more we know what is going on could save additional hospital stays and/or unneeded tests. Or the sell to Vanderbilt is that they could be on the cutting edge with Maggie as a very likely candidate for this test. Now...it could give us answers, or ...it could identify something that's never really been heard of before. We already know she is "rare". So, it could be answers with research, or it could be answers with no additional solution. Either way, it may shed a little more light on what we are up against.
Right now we are headed north. Sorry to some, but not to Iowa. (December 6-11 we will though!) We are on our way to Conneticut for 3 days of intensive therapy. It's the same kind that we receive in Knoxville, but it's the main hub of the therapy and will be all day long Monday, Tuesday, and Wednesday. Carla, my stepmom and a PT, will be flying out to join us. She has been a wonderful sounding board for me as we try better understand the body. We are super excited to spend some time with Grandma! And Shawn with his Mother-in-law! :)
We also got to spend the night with some super cool friends-they were in the children's ministry at the church I worked at in Iowa City in my single days. See picture below of the super sweet Smith girls with Mags. The 4 girls remind me of me and all Mags' aunties! Awesome that they are right on our path and opened their home to us for the night.
Also, I get to find an IKEA-yippee! And, Daddy gets to drive us around where he grew up outside NYC.
And, we will hopefully get to see our niece and nephew, Amelia and Quin, one of the days while in CT.
How I would love for us to explore much more. (This is one area of the country I have not traveled much). But, we are trying to stay low key and not try to do too much. Really sounds like that, right? But this is low key for US! And an adventure nonetheless.

On some side notes...
Please be in prayer for some friends of ours. A sweet little guy we know is preparing for surgery next Tuesday. He is 10 months old and also has seizures. His grandma worked with me at Hal Henard last year. I know there are so many emotions built into this procedure for his family, so please lift sweet little Everett up with us!
I have found great online communities of moms walking similar journeys. It's great that they get it and we can share each other's burdens, being able to completely empathize with one another. A Christian community of moms with child with any disability is a Facebook group called "(in) Able-an (in)courage community". Another group is "Epilepsy in babies, toddlers, and children support group".
Also, I started a "Healthy Homemakers" group for those interested in learning from one another on how to better treat our bodies as the temple God designed them to be. Join any if they pertain to your situation too.

That's all for now. We are almost to Ikea!

Sweet baby doll!

After the bombshell of last week, we have seen lots of good things this week.  We continue to be encouraged.  Also, the more Shawn and I process everything, the more we know how debilitating FEAR can be.  We know that FEAR is not of God.  Everything seems unbearable and difficult when we dwell in unknown and let our minds go astray.  I have to continually remind myself of the Philippians 4:8 "whatever is true..., think about these things"  That means, whatever is true at this moment, not the what-ifs and could-bes.  And at this moment, we have a smiley fun little girl that IS making improvements and continuing to grow and develop.  She has become more verbal with expressing herself, frustrations and all!  (We are the abnormals that take that as a woo hoo positive)
Our fun for this week was trying to figure out clicking and sticking our tongue out.  Over the past couple of weeks, I have really focused on trying to connect/communicate with her and see what all she could be processing.  It's so fun to watch her try to figure things out.  Grandpa started to clicking last weekend and I noticed she was really trying to process it all, so we went with that this week.
We have also been trying to re-establish some sort of schedule.  A friend and I were talking last weekend, and I was reminded how important that sleep is for brain development.  Also, I know how beneficial it is for kiddos to have some  level of predictability.  I have been trying to protect her naps a little more and schedule things accordingly.  However, her is a glimpse of our past week:
Monday-cardiologist in Johnson City-heart good
Tuesday-PT in Knoxville
Wednesday-OT in Greeneville
Thursday-PT in Knoxville
Friday-Early Intervention meeting at house and Dr. office for growth check
Amazingly, they were all in the afternoon and I somehow I feel like we are getting a little more into a groove.  Next week doesn't appear much better though, and I don't really anticipate an end in sight to the living out of the car.
Monday-OT
Tuesday-PT
Wednesday-appt in Nashville with GI
Thursday-rest!  (as of now)
Friday-PT
As crazy as everything seems at times, overall, we are doing very well.

Dr. Mom's Manifesto

I know that I have brought up various bits and pieces of some of my thoughts along this way.  I ended up emailing our neurologist the following to explain some of my rationale for bring up some seemingly obscure things.  I thought it might be beneficial for those of you following our journey to see how some of these pieces go together in my mind.  I just copy and pasted from the email, so keep in mind, this is a portion of an original email to our doctor...

I am confident there is more going on with her spine, vagas nerve, CSF, etc.  Is there more you can do to test the functionality/motility of these things?  Though I continue to gather more information, and the puzzle continues to get bigger and bigger, my overall theory of what is going on with Maggie has not changed that much at all.  I think her spine/cranium have been compromised.  I know you look for big structural issues, but I am convinced, that even the slight issues play a role.  Just yesterday, her sacrum was able to relax and drop a bit.  Our PT described it as being jammed up a bit.  There is no doubt in my mind that her breech position and C-section played a role in all of this.  The contractions of jamming her spine without being able to move down the birth canal, the abrupt pressure change with the incision, the jarring of her out of my small incision.  I don't think any of it is malpractice by any means, but I do think it plays a role.  On top of all that, she didn't receive the natural alignment of traveling through the birth canal.  Nor did she receive the natural exposure to bacteria, because she didn't pass across the perineum.
Due to my lack of concern for truly healthy eating habits up to this point, a whole other realm is opened up.  I know that not much stock has been given to my gluten suggestion, as "that's a GI thing", but the more and more I research, I discover how much the integrity of our intestinal health affects the lumbo-sacral portion of the spine, and in turn affects the rest of the body.  I have a lot of trouble not believing that even minor inflammations and disruptions wouldn't play a role in affecting other parts of our intricately complex systems.  Some of my questions still go back to diet in general.  Between consuming GMO's and gluten, I'm sure the walls of the intestine have been harmed, causing a malabsorption issue and/or allowing undigested food to enter the blood stream, which in turn causes the body to want to attack it and go a little hay wire.  Also, inflammation of intestines and constriction in the fascia (whether subtle or not) adds additional strain/stress to the lower lumbar region.  Up until the past couple of weeks, she has had quite the restriction in her sigmoid, not allowing toxins to leave the body as easily.  There is no doubt that my diet and our therapy has assisted this in getting better.  I have started an elimination diet and am trying to reintroduce foods to see how she responds.It is my mission to identify the specific food/types of proteins that aggravate her systems and the ones that facilitate optimal growth (ex. I have tried to add more salmon to my diet to increase the intake of omega-3 fatty acids.)  Are there things specifically I could be avoiding to aide in stabilization of her body?  After some research and speaking with other moms with children with neurological issues, I'm intrigued to know what you know in regards to carbs, sugars, GMOs, etc. and the affect you believe they play in neurological issues/seizure control.  If you are thinking it is potentially a metabolizing issue, are there certain foods that would contain specific nutrients to aid in the metabolizing?  Or ones to avoid?  I'm sure there will be errors in all of this on my part, like consuming more nuts and dairy, when those were probably issues (possibly causing the vomiting)  But, it is all worth a shot in my eyes.
I am still concerned that 1/2 the Clonazepam is aspartame, particularly if she is having a trouble metabolizing sugars.  There is no doubt in my mind that it is helping to keep her stabilized, but could it also be creating issues?  Another concern is with the Trileptal, and I know you probably hate the, "another mom ...", but I know of another child with a rare condition that had an awful reaction to sodium blockers.  I don't necessarily think she has a reaction, but if it isn't very effective with controlling the seizures, then is it something that needs to be in her system (potentially having adverse issues)?
By no means do I think we need to pull change everything up, but I do want to make sure we are being mindful of these things.  And genetics in the whole pictures.  I'm sure there probably is some sort of mutation/disruption somewhere.  I can't image with all the toxins that we are subject to that there isn't.  And that's where my ponderings rest with the chicken before the egg or egg before the chicken....could the mutation have prompted the malposition in the womb, troubles with malabsorption of nutrients, etc...?  I think any research that can be done to find correlations between similar kiddos and aid in treatment would be extremely beneficial.
I know for us that our physical therapist has been extremely helpful in working to restore the integrity of her systems.  Everything he has told us has been consistent with the medical diagnostics (ex. informed me of restrictions of blood flow out of cranium prior to MRI findings).  Knowing the effectiveness thus far, we are planning a trip to receive more intensive treatment in November.
Please don't mistaken all of this for naivety or a grasping for straws.  I do realize the severity of the issue.  That is why I feel more of an urgency than ever to keep searching for the "whys".  I do feel like a 2 year old asking the "why" questions, but, each question takes me one more step back in her process and puts more pieces of the puzzle together in my mind.  I simply don't want us to be overlooking things that are seemingly unrelated.

Dark days this past week

It probably doesn't take too much effort to figure out, if you don't hear much from me for a while, it's usually not good.  Sometimes it might just be that we are busy (which is partially true), but our doctors visit last Wednesday was awful.
The neurologist walked me through her MRI a little more and showed me all the abnormalities. (gray matter not as dark as it should be in some places, the hematomas, extra space around the brain-signifying her brain is smaller than it should be)  Needless to say, many things are just not right.  And he told me that at first he was hopeful that the seizures only had the one focal point, but it saddened him greatly to realize they were multifocal and originating all over.  The harlequin syndrome that she presents (1/2 face red, 1/2 normal) suggests issues with the autonomic nervous system and brain stem.  Which, heart and breathing are also regulated by the ANS.  Some tests have come back-all negative.  Basically, they don't have any answers, except that she is fragile and unstable.  He drove home the severity of it all and made sure that I realized... death is a likely possibility for her.  All the questions I had written down were irrelevant at that point.  (verbalizing it, or even just typing it seems to allow it to be more of a reality)
I held it together, but got out of there as quick as I could and by the time we got to the car, I was a complete mess.  We were going to stay with a friend in Nashville, but all I wanted was for us to get home to Daddy.  That drive was good for me...I really was able to just let it all out!  My mind went everywhere and I just cried out to God.  I briefly talked with Shawn, but it wasn't a discussion we really wanted to talk about the details over the phone.  My stepmom happened to call.  I debated answering or not.  That was a point for me to realize that I couldn't hide from this.  I'm glad we did talk, but a good portion, we just sobbed on the phone together.  I processed a lot on that drive.  However, I only made it to Knoxville before I ended up with a killer migraine (of which I have only experienced one other time).  Got a room for the night and then went straight to PT the next day.
The physical therapy visit was a breath of fresh air.  I knew I would fall apart updating them, and I did.  But, they offered so much encouragement.  Some things that I walked away from there with were:
The body is constantly changing, for better or worse.  We are seeing improvements and will continue to see improvements.  The MRI is just one snap shot of what is going on.  The body naturally heals and wants to.  Sometimes it just needs some prompting.
The medical field has the obligation to provide you with the worse possible scenario.  (it's better to process it now than being hit by a freight train down the road)
The brain is constricted for a reason.  He explained facia to me and how it is in and around everything and can either be too relaxed or constricted, causing issues.
A quick fix is not always the best thing for the body to sustain itself.  She is making improvements in areas to better be able to support what's going on with the cranium.
And, Piotr (our PT), reminded me not to put our faith in man (neurologist, PT, anyone), but that God is the Healer and Great Physician.

Our concerns are with the urgency of potential breathing/heart issues, because I do already notice slight breathing irregularities and while in the hospital, there have been consistent troubles getting a decent blood pressure from her and O2 saturation appeared to drop in relation to seizure activity.  So, he gave me the information and we contacted the main center/hub in Connecticut for this type of therapy.  We are in the process of getting that scheduled for November 12, 13, 14.  Though it will be out of pocket, we really do not care.  The alternative of no answers and a hopeless outcome doesn't work for us.  Piotr has provided the most encouragement in all of this and I have seen tangible results with the therapy thus far.  And really, my theories on what is all going on with her, though more continues to be revealed, hasn't really changed that much.  I won't get into that all today.  I know, many are probably thinking, "physical therapist?  yeah right.  what are they going to do?  Good luck with that."  But, it's not the traditional range of motion that many think of with physical therapy.  It is listen/feeling the rhythm of her fluids to know where disruptions are and then prompt the body to do much of it's own healing.   I can already tell that the colon is improving and I am now able to tell when she is exposed to something that her body doesn't agree with.  The trouble is identifying what that something is.  They will work to restore all of her body's systems to be able to support one another.  For those interested in what we will be going to, you can look it up at www.centerIMT.com.  Because it treats individuals, research is based on case studies.  And, you can't deny results.  One of the listed case studies in particular was a description of Maggie's digestive issues, and noted as compression of the vagas nerve.  The vagas nerve affects tons of stuff.
We had a cardiologist appointment today and he told us that her heart looks good!
So...in all of this, we are still very hopeful.  I am doing everything in my power to get to the bottom of this and not settling or dwelling in the thought that this is it for our sweet baby doll.  I sent out a few letters and am working on getting in contact with the real life columnist behind the "House" series.  One of our favorite series-who would have had our own Mystery Maggie case.
It takes a ton to try to process all of this, and if we continue to try to wrap our minds around it, we will go crazy.  Thank goodness we can put our trust in God and know that He knows every precious detail of our little girl and there is a plan in all of this.  Also, we know that she is not ours.  We just have the amazing privilege and responsibility to care for her the best that we can.

Maggie and I went camping with some friends this weekend, while Shawn was busy working.  All of us agreed that it was a very cold night.  Maggie was quite snug in all her layers and as I continued to check on her all night, she was fine.  However, I couldn't wait for the sun to appear.  I continued to check the time and just kept wanting the long cold night to be over.  Joy really did come in the morning when I heard others stirring and working on building a fire.  It was a good reminder to me that though this "night" may be long and the joy of morning seems long away, the Son is always there and will be revealed.

Marathon, not a sprint!

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 :) )

Celebrating small victories

This week Maggie has been getting much stronger with her neck control.  Still doesn't hold it up regularly, but she is definitely getting stronger with it!  Yeah!  Her grasp is also getting stronger when she holds our fingers.
One medicine down...today was the last dose of the antibiotic.  Yippee..still somewhat disappointed that we started it in the first place, but oh well.  At least we are done with it now.  Only 6 meds left.  (maybe, just maybe, there will be a day when she doesn't have to take anything...I can dream, right)
Puking continues (not celebrating that), but she held 5 feeds down today, so we can celebrate that.  I was thinking we might be kicking this puking thing...only to get covered in it!  Not holding my breath.  We were down to morning and evening vomits earlier this week and then went back to 4-5 a day.  What fun, what fun!
We can celebrate wet diapers.  I did do a crazy momma party dance over a couple of wet diapers today.  I was excited because I haven't been seeing wet diapers, just runny poo (I know TMI), but I was quite excited that she might be a little more hydrated than the rest of this week.  She should be having a lot more wet ones, but we will take what we can get.
I thought there was more to celebrate, but can't think of them now.

Prayers

My sister found 31 days of healing verses and committed to praying through these scriptures every day for a month for sweet Mags. God truly is the great physician. Join us in praying for sweet baby doll while we wait for tests to come back.

Old Testament

Exod 15:26 | Exod 23:25-26 | Deut 7:15 | Ps 91:9-10 | Ps 103:1-5 | Ps 107:19-20 | Prov 4:20-23 | Isa 41:10 | Isa 53:4-5 | Isa 55:9-11 | Isa 58:6-11 | Jer 30:17 | Mal 3:6 Mal 4:2-3

New Testament

Matt 7:7-11 | Matt 8:16-17 | Matt 9:35 | Matt 15:30-31 | Mark 11:22-24 | Mark 16:17-18 | Luke 4:17-19 | Luke 9:1-2 | Luke 10:8-9 | Luke 13:16 | Acts 4:29-30 Acts 5:15-16 | Acts 10:38 | Gal 3:13 | James 5:13-16 | 1 John 5:14-15 | 3 John 2

It just keeps coming

Just cleaned up puke #4 for the day. Here I was silly enough to think the past few days with only 2 a day was a sign we were doing better in this dept. And yes, tomorrow will be 3 weeks of vomiting with no real end in sight.

Home

We are home and getting settled back in. I got the text, "you up for visitors?" Multiple times yesterday. It was a blessing having others here to love on baby girl throughout the day. She was exceptionally smiley and cooing for quite awhile with Ms. Natalie and Nana.
For a summary of where we are...
Maggie is still vomiting. I will continue to search for trends and document to try to find any patterns/correlations. We have to monitor and watch for dehydration, and go to our PCP weekly for growth checks to make sure she doesn't lose too much.
We're working hard to try to gain more neck control to hold her head up.
Momma is working on drafting up a letter to send out around the country to seek further support and information. It is my prayer that we can find someone in Integrative Medicine which will look at Maggie as a whole AND have the knowledge and skills to treat her as needed.
Gotta go for now...she just threw up and we need to get cleaned up.

Home?!?!

We're going home today! Excitement, anxiety, relief, disbelief, questions, unknowns, uncertainty, helplessness, frustration, weary, wondering, motivated, puking, changing, laundering, smiling, cooing, puking, changing, laundering, submitting, accepting, puking...

Besides all that, we are stoked that we get to see Daddy today!
As of now, the plan is to get a hotel for the night here in Nashville to see how things go, enjoy our time together as a family, and then finalize some things Monday morning.
But, all of this could change at a moments notice.

Quiet day....

It was a very quiet day for us, especially considering the past few days of going here and there and testing this and that. This morning they talked about sending us home with the intent to follow up in outpatient clinics. It's not like we are that much ahead of where we were when we first came in. Yes, the seizures are appear controlled (except I fear they are going to rear their ugly head again soon with some of the eye movements I've been seeing). Other than that improvement, we are on 3 MORE meds than when we came in and STILL vomiting. I don't know what to think of it all. I know they are hopeful that the genetic tests will shed some light on everything, and I know that we can't live in the hospital forever, but it doesn't seem like they've got the whole picture of Maggie in mind here or really have it managed. The one point of contention we have is regarding this apparent UTI. Now follow me on this one... There was a trace amount of bacteria that grew on the culture and I was told we were treating it prophylactically (before it does get bad). But, they are attributing the vomiting to the UTI. Which the onset of the vomiting was 1 1/2 weeks prior to the culture. If there was even trace amounts when the throwing up started, it would be a flaming UTI now I would think. I realize that they want answers too, but that kind of seems like a stretch to me.
I just don't know what to think. I just need one doctor to believe that it could have something to do with the crap that we've been putting into our bodies. There is so much information out there that we simply ignore. To me, if genetics show gene mutations that doesn't convince me that anything was passed down generation after generation, but that all these toxins have unfortunately happened to affect both Shawn and me, and possibly a generation up. Gene mutations surely are not a part of God's original design. We won't know anything on those for a while. One that they are testing for has only 200 cases throughout the world. Mystery Maggie is definitely rare, and that's not just because who she has for a momma and daddy.
During my research, I came across a break through idea. Aside from her meds being toxins in and of themselves, they could contain gluten or something else that she is reactive to. More research to be done in that area.
That's all for today. So much for this being a short post like I thought.

Maggie couldn't have anything to eat from after midnight Thursday night until her CTA. Unfortunately, that wasn't until 3:30 in afternoon. I realize that every kid is important, but I would think a 4 mo old that is starting to lose a little bit of weight and not keeping much of anything down would be a priority to not have fasting all day compared to kids. And she needed fasting bloodwork which I kept asking the nurse to do before the CT so she could eat right away after the CT. But no, she waited till afterwards, so Mags had to go even longer. Not that it mattered much, because she threw that up.
GI did come by later in the early evening. He just asked a bunch of questions and realized as well that there aren't really any trends to it and it doesn't directly correlate with anything. I'm sure we'll be seeing more of them. One nurse mentioned lying her on her right sides for feeds since that's the way the tummy drains. Worked a couple of times, but tried it again last night and disproved us. My latest lead is placing a hand on her back and on her tummy to prompt her own healing. I had done that with the first few side lays and it worked. And then it seemed to help with these 2 feeds this morning already.
Genetics was by again to see us an
Tammy and her boys came by and stayed for a while this morning. We were able to go outside for a bit.
Heather and Travis and the kids swung by and brought us some stuff. New leg warmers are perfect! We finally got a picture with our most frequent visitors too.
Tammy also went to Trader Joe's and got some groceries for me to have stuff to eat. Not sure if elimination will work or not.
Really, we're not so sure about anything and I will try whatever I have to for my little bug, even if it means taking everything out of my diet (even though chocolate and ice cream are so tempting as therapy), or laying sideways, upside down to feed her. Anything!

Before the Morning

Yesterday morning, this song came on Pandora Radio and couldn't be more fitting

Josh Wilson
Before the Morning

This one is longer but tells how the song came about, and the little boy's response is exactly what we hope and pray for with our Maggie Joy!
http://m.youtube.com/watch?v=AUHe744pIMw

If you don't have as much time, this is just the song and definitely worth listening to.
http://m.youtube.com/watch?v=MniOtRnCO9I

Or just read the lyrics below...
Before The Morning lyrics

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Chorus:
Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so just say a prayer.
and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning
yeah, yeah,
before the morning,
yeah, yeah

Once you feel the way of glory,
all your pain will fade to memory
once you feel the way of glory,
all your pain will fade to memory
memory, memory, yeah

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

com'n, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
just the dark before the morning
before the morning, yeah, yeah
before the morning

Christian lyrics - BEFORE THE MORNING LYRICS - JOSH WILSON

Housekeeping day...

Washing all the bottles and pump parts.
Finally able to do laundry. Our nurse yesterday tracked down that 4th floor washer and dryer works, so I went and started to a load. It happens to be the NICU floor and they had a ton of cute hats that various people from all over have made for babies. The football hat was bigger and so cute they let us have it! We need a black and gold flower. Guess we are ready for UNI and Minnesota Vikings football for the weekend.
Success that we kept down 930 and 1130 smaller feeds last night. A nurse suggested lying her on her right side to feed. Who knows? But we'll take some absorption. Bummer that her tummy just convulsed and threw up the meds this morning though.
And, we are NPO (no food) this morning for our CTA at some point today to look better at the blood vessels.
GI is supposed to be coming by at some point this afternoon as well.
As our nurse said yesterday, she has 2 question marks...brain and tummy.
At least we've got adorable cuteness going on!!

Thursday was just fine

It was supposed to be a quiet day, but became quite busy as the day proceeded.
A couple of doctors from the genetics team came in this morning. They had a handful of questions and left with what seemed to be a couple of leads to explore.
We went down to get an X-ray of her tummy to see if any reason for suspicion.
Ms. Lou came to torture her and get more blood. Actually she is wonderful and knows exactly who Maggie is when her name comes up for more blood draws. She mentioned the possibility of having to do a picc line if we have to continue to get blood form here. I've said over and over I'd rather them take blood(something she can make more of) than have to put meds into her.
She has lost some weight. Dietician was by and suggested we put her on formula for a bit to see I the vomiting stops. I'm not a big fan of that and am still going to check them out, but it is an option we may be looking out. In the meantime, I have decided to do an elimination diet to see. No gluten still (been a couple of weeks already), no sugar, no soy, no dairy/whey. Once I am off all and it helps calm her tummy then gradually I can introduce one and watch for reactions.
I still think her systems are compromised and food consumption as a role in this whole issue.
OT worked with her for a while.
Speech just checked to see feeding a bit again. No issues.
There was not bleeding in the eyes. They concurred about delayed visual development and recommended to follow up with the local eye doctor at 6 mo as already planned.
We played BINGO through the hospital and got some prizes.
We
to go outside and get some fresh air and sunshine for a bit.
And...we had a sweet friend visit tonight. Ms. Tammy was the perfect one to sit and chat with. Her line of thinking with holistic care and medical practices is very similar to mine. She was able to empathize with my frustration that we are missing the middle ground here. There are definitive things that I know are true about Maggie that these medical professionals dismiss as a non-component. Just because they are not familiar with something does not mean it is wrong or not plausible. Tammy is very passionate about diets and. reassured my thinking of diet in the picture and is going to pick me up some good food. (Disclaimer: when I say diet, I'm just referring to the general idea of consumption). Interestingly enough, what I would consider my home church in Iowa is going through the spiritual act of fasting. The more I become educated, the more God reveals how our eating is related to spiritual. As my friend Pam said this weekend, "we've taken something God designed for nourishment and made a recreation out of it." And, there is big money driving lots of regulations and the overall corruption of the food industry. I encourage everyone to do their own research on GMO's and gluten. Blissful ignorance is great, except is killing us. Type gluten and ________ (anything-ADHD, autism, cancer, Alzheimer's, ALS, seizures, thyroid, diabetes). I would be shocked if you don't find much and not just forums, but actually medical journals. It can manifest itself in all kinds of crazy ways and is often times the culprit when nothing else provides answers. And people tend to get a little more sick coming off it. I hold fast to the fact that these things play a role. Maybe not the end all be all, but something. Still know that her back is an issue too and even though no one here care, how can the spine not play a role. I think she has some compromised systems on top of potential genetic mutations (why wouldn't unknown" genetic mutations be caused by all the toxins we put into our bodies.
Ok...off the soap box. I just got going and think it all is a component in this whole Maggie puzzle and is all being overlooked.
Looking ahead...
More bloodwork.
CT scan with contrast to look at vessels. We tried today, but she wouldn't be still enough, so tomorrow morning she has to go under anesthesia again. Boo.…
Thank you all for the prayers and encouraging words. Though I don't respond to everyone, I really enjoy reading them. And I can definitely feel God's comfort and that many of the petitions to The Lord on our behalff have been answered. Emotionally today was great day! For no real reason.
Ok...sleep is needed. Not proof reading tonight. That put me to sleep yesterday.

Grand Central Station

After rereading the previous post, I realized maybe I should proof read a little better for it to be understandable. When the neuro team came in yesterday morning, they told me they had a full day planned after reviewing everything more.
Opthamalogy was in and out a few times, dilated her eyes and looked at them. They were checking for bleeding further, which, I don't think they saw. I think they saw something that sparked their interest, but not really sure.
Speech came by to check out the whole feeding situation, gave some tips, but I don't think she saw anything glaring wrong.
A social worker came by. Kind of funny story (I can laugh about it now). When she introduced herself, I just started crying, "you're here (sniffle, sniffle) because of DHS (sniffle, sniffle)?" "Oh no...you were just on my rotation to see today. How are you?" Obviously, she sat and talked for a while with this falling apart Momma.
PT tried to come in at one point, but Maggie was sleeping good and she said she'd be back later.
She got the EEG off for now to allow her sweet little head to breathe a bit. I love being able to snuggle with her and nurse her again!
The genetics team is supposed to be coming by too. I didn't see them yesterday, so I assume maybe tomorrow. This is not a fun road to be on at all. We already sent the lab for quite a few deficiencies and a gene disorder. Really pray for my mind as we head down this route. Many gene disorders do not have a very promising prognosis. I want to and need to be informed, but pray that we don't let our minds dwell in the what-ifs and could-bes. It's clearly a way for Satan to try to get a foothold in the mind.
With the idea of DHS, I thought, "really Satan, is that the best you've got?!? Bring it!" And he did when I started reading about some of these disorders. There is most definitely a war being waged and God surely has been glorified through all of, so why wouldn't Satan try a little harder to destroy us. We can continue to rest in God's promises. But...the whole genetics path could be very trying and difficult. Pray for us to focus on the truth of NOW!
And, why am I up again at this wee hour, you ask...Maggie is still throwing up. As most parents would know, that is something that snaps you right out of any foggy, sleepy haze and leaves you awake for a bit. We don't have any leads in this one. She is taking in more milk again now that seizures are back under control, so my hope is that some of those nutrients are staying down, but we are going on quite a while now with having to stay on fluids for lack of intake (more so the non-normal way of output)
Please continue to pray for Shawn as he is working. He wants to keep his mind focused and clear in order to survive this crazy week/weekend. Pray for him to keep himself in check, that he doesn't explode on any grumpy, complaining people around him. Obviously, Shawn has a reason to completely implode and he has people around him b****ing and moaning about ridiculous stuff. He is definitely on survival mode right now. I've got it easy because I'm here with Maggie, and I can see her overall attitude. He did point out how comforting it is to hear her cooing and smiling, because it let's us know that she is still herself and not in a lot of pain.
Ok...finally tired now. Back to sleep for a bit for me!

Yesterday ended up being a rather busy day. She went for her MRI earlier than scheduled, which was good. It's am-zing how fears can be crippling. Throughout the morning my mind would wandering and dwell in the what-ifs, I'd tear up, and then remind myself that it's not truth for the moment. I was amazed at the verse Proverbs 29:25 and how God used that for remind me that she is in his hands. The most difficult part was giving her a kiss and watching them carry her away. However, they wheeled her back up and told me she did great, didn't have any troubles. Seeing those bright little eyes was such a blessing.(granted, we'll never really know if my other concerns about anesthesia are truly correlated or not)
We had visitors yesterday. Some Miss Heather and Mr. Travis and their kids, friends of Shawn's from when he was on team that are faithful visitors when we are in Nashville. And a familiar face from Greeneville, Mr. Chuck hung out for a while. It's kind of nice when other Daddy's have training over here and can come visit. I saw some Titan players around the building, but they didn't specifically visit. However the gal with her guitar came by and sang her song again to Maggie.
And, the doctors gave us some results of the MRI. There were lots of details provided. I'm still processing some of it, and it will probably take a few more conversations before I have a good grasp on it all. So forgive me if I go back on any of this info later. The results were definitely abnormal, and there are a few different things. She appears to have excessive blood vessels in the subdural space (area above/outside of the brain). And in regards to that, it appears she has bleeding on both the left and right sides. And, the blood shows these "traumas" took place at different times. So, go ahead a google it. Yep, number one cause of these things, abuse and shaken baby. My sister and Shawn and I speculated if DHS/CPS has to get involved at all. I know nothing has been done to her intentionally and the blessing is she has basically always been with me or Shawn. If something is initiated from this, this Momma will have major issues. there are much bigger fish to fry than a Mommy and Daddy already doing everything possible to help sweet little thing. The other thing is she is such an easy baby that they would know she is way less susceptible to to anything. That stressor better not be added!
Another thing from her MRI showed something similar to a stroke in regards to the tissue connecting the hemispheres. I quickly looked back at a message from a friend and saw that t was similar to their medical results with going down the gluten sensitivity road.
Seems there was something else with the MRI, but I can't remember right now.
She was sleepy and a snuggle bug with me until she had to get back in the helmet. Love that!
The episodes I've been noticing have been confirmed on the EEG as seizures, as well the subclinical seizures. So they did put her back o the Clonazepam to try to get as back to where we were when we left the hospital last time.
Oh...and we started an antibiotic for what 'could be' the start of an UTI.
I did have confirmation that everything about what is going on is rare. None of the pieces add up. Last night they had to draw lots of blood to run a variety of tests.
And, she's been on IV fluids so I have not worried about pushing feeding that much with everything, but early morning she did take in quite a bit, only for it to all be thrown up. The vomiting continues, and we don't know any more than we did before. In fact, given the new findings that don't relate, we know less than we did before. As of right now, we are still both in ok spirits, but Thursday is coming and that's usually my rough day. Time to rest up some more- the journey continues!

She's back!

She's back from the MRI and they said she did great!

Why we update...

There are many reasons to blog (or update care pages, etc.).
A) We know so many people are loving on us and our sweet baby girl that we want you to be in the know.
B) It's easier and less draining to say, "we updated the blog. Ask further questions from that info if you need."
C) We know people want to know specifics so they can present specific requests before The Lord.
D) To vent!
E) I am reminded of the verse in 2 Corinthians 1:3-4..."Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God." Hopefully somewhere in all of this we will be able to be an encouragement to others. Our goal is to be transparent in all of this. Not just sharing highs or events, but for others to see and experience where we are in this.
F) a form of journaling that helps maintain my sanity in the wee hours of the morning.
G) To bring glory to God. As crappy as the situation is, we can stand firm on His Promises and know that He will be glorified through this!

Having said all that, I was laying the groundwork for a bit of a vent session, but I am tired enough to go back to sleep now!

It's been a fairly uneventful day in the hospital world. Maggie slept hard by the time we got settled into a room. She woke up pleasant (like most mornings) and seemed not too bad. I keep raking my brain trying to figure out what was different. They gave her some fluids last night and a bit of anti-throw up medicine, but nothing should have made that big of turn around. She still wasn't eating the greatest, but we could chalk that up to fluids. I marked some suspected seizure episode stuff, but nothing since we've been here was quite the condition of yesterday.
They did see some subclinical (only noticeable on the EEG) seizures. The bummer and complexity is that they have moved from originating in lower left occipital lobe to starting in right lower parietal. Grr.... One more mystery.
And...she has to have an MRI tomorrow. It is scheduled for 2pm, but they hope to get her in sooner. Unfortunately they have to give her general anesthesia. This has been a huge hang up for me for a while now. I'm sure it will all be fine, but I can't deny the fear and what-ifs that loom over the idea of our sweet little bug being completely out. Prayers appreciated for a peace for me with this.
Late this afternoon she started the vomiting again and hasn't held much down. For the life of me, I can't figure out why the cycle.... Good mornings, physically fall apart afternoon/evenings. I did mark a few more episodes this evening as well.
I can't tell you how many times I've heard, "oh my... Look and those beautiful eyes and long eyelashes. Everyone can't help but fall in love with her!
We did move rooms tonight. As we were moving, I ran into quite a few faces we already knew and even have a repeat nurse from our last stay her. Another answer to pray is the neurologist is one I liked from before...go figure, he is from Iowa! And, today we found out that the resident is from Iowa too! Since the neurologists round for a week starting on Mondays and it was about 6 weeks since we were last here, I knew that was something that could either make or break our stay. Praise God it was one I like...just pray if it's re same cycle that we are out of here by next Monday!

A recap of this past week, as I know there is more to come soon.
The doctor had us reduce Mags' Clonazepam to once a day. Initially, she seemed a bit more alert and even definitively looked at me and flashed a purposeful smile at me. That was last Friday-warmed my heart. And then....she started throwing up. It was just consistently early evenings. At first I chalked it up to feeding. All babies spit up, right? Caught a bug maybe? If that was the case, it would have been continuous. I thought maybe an allergic reaction to something I was eating, so many possibilities. When I noticed this trend and I got ahold of the neurologist's office. They said she was probably having withdrawal from the med and they told us to take her off it completely. That wasn't even something Shawn and I came up with. It was then that I realized that God has protected me and allows me to not realize some information until I can handle it, like my 4 month old daughter could become addicted to the drugs.
So...Monday evening was the last she had any Clonazepam. Since then, she did not throw up Wednesday (though we had therapy and they did identify a lot of emotional stress going on. I'm sure they helped balance her systems a bit).
The rest of the week, we have created a lot of laundry. Friday evening she seemed to decline a little more, throwing up more consistently. The on-call neurologist suggested giving her the Clonazepam again to "stop the vomiting". We considered, but she actually zonked that evening pretty well and we thought she might be doing better. And in my mind going on and off meds that she could be having withdrawals from just to stop the vomiting didn't quite make sense to me. Now if they said to put her back on to get her by until we can get an EEG, then maybe I'd buy it. At any rate, we didn't give it to her. Saturday morning, we found out we were wrong and she was still not doing so well. At this point we became more concerned with dehydration. I spoke with the on-call nurse coordinated with our doctor's office. She recommended that she be seen by someone medical, so we went in to the local hospital to get checked out. The bloodwork showed she was hydrated, electrolytes looked good, so we thought she was stable enough to make it through the weekend till we could get with the neurologist for an EEG. And Saturday evening it appeared she was moving up. Sunday morning not too bad either. And then she threw up at church. And she started some weird eye movement stuff. Three suspected seizures in one hour, not feeding well, and throwing up=time to head back to Vanderbilt.
We had been praying for discernment to know when to head back, and it was pretty clear to both of us. I started the trek by myself only to figure out I would be paying too much attention to the gagging child in my review mirror. At the same time, our dear friend insisted that we don't go alone. So Pam caught up with me and chauffeured us to Vandy.
The minute we pulled in, she really started to decline. After waiting for a while behind a 10 year old with a headache, the nurse started to ask questions and assess her, only to take her from my arms and rush her to triage.
So far she has been decently stable and I have been asked lots of questions over and over and over again. She's finally in her helmet and I may get to lay down for a bit. We'll keep updating...