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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.


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.