About Us

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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.


Holding our own

I'll try to make this quick, as I have a lot to do still tonight. 
My response this week for "how's Maggie?" is "we're holding our own".
We started the new medicine last Friday.  It broke our hearts to see little peanut conked out all through the weekend and a good share of the week.  And, to my surprise, that brought us back to feeding issues.  She wasn't too interested in eating...just sleeping.  She's progressively doing better with eating again.  Finally, by Friday, she regained a little bit of her spunk.  But, then Friday evening we had to up the evening dose again.  Then next week we will up the morning dose too.  Hopefully, in a month we won't be seeing the spasms AND her body will have regulated the medicine a bit to allow her to be her spunky little self.  As for the spasms, they appear to have decreased in intensity some, but seem to be a little more random.  Before, they were always when she woke up.  Now they slip in at other times sporadically.  Don't know what that's all about, but oh well. A game of wait and see.

Follow me on this one.  Some of our dear friends here mentioned they had friends in Florida with Hyperbaric Oxygen Chambers.  I began researching this a little more the other night.  I came across a few that I liked and looked all over their websites.  One in particular sparked my interest as it can be scheduled in cooperation with this TheraSuit Therapy (something else I've been looking into...wouldn't be until she's 2 1/2).  At any rate, I asked Shelley for more info about her friends, and guess what??  They are the people I was already skimming the website of.   Coincidence...I think not!

When we left CT last month, they felt it important that we get back up sooner rather than later.  They were really starting to get into more the core of some of what we are dealing with.  Due to trying to figure the spasms out, we just finally got everything confirmed at the end of this week, and Mags and I are leaving after church tomorrow to make our trek up to Connecticut.  Fortunately, we will be stopping at our sweet friends' place in Pennsylvania.  We are also planning to go see Cousins Amelia and Quin for just a bit when we get to CT on Monday.  Maybe an IKEA too!  Then she has therapy Tuesday, Wednesday, Thursday, and 1/2 day Friday.  We will head for home after that.  Each trip we have made, I've known that the next one is covered financially as well.  This trip brings us close to the end of our current resources.  Knowing that, I've tried not to allow fear to creep in.  Instead, I am confident that God will provide exactly what we need at exactly the right time.  Interestingly enough, we received a couple of donations out of the blue this week that are big helps towards what's ahead.

My goal right now is to get this trip under our belt, and then when we return it will be back to the drawing board to reassess where we are with everything.  If there are other things we should be exploring, etc. If anyone has any great fundraising ideas, please let me know. We've tossed around ideas like spaghetti dinner with silent auction -here and/or maybe while in Iowa in May, having runners collect sponsorships for Miles4Maggie and participate in any local run.  Can't really do another gift wrapping in April, unless some people have lots and lots of birthdays to prep for :) My mom and sister are prepping for a benefit ride for Mags at the end of April.  Hopefully we'll get to go too and it will bring in some funds.  Anyway...enough about that, we'll be fine!

I really need to get packing so we are ready to roll out in the morning!
By the way...Little Miss was 10 months old yesterday.  Crazy that my baby doll is getting so big!

1 comment:

  1. Rach - Would be more than willing to help set up a 5K somewhere around here. They don't cost much to have (the Decker's would love to help sponsor) so there is a good amount of profit in holding one. Think about it and call me when you can! Love you and always thinking of you and praying for Maggie!