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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.

1.09.2014

Great things in store...

It has been far to long since I have posted.  For the most part, Maggie has been holding her own as we slowly decrease her Zonisamide and gradually increase the CBD.  Thank goodness she has been stable, because there has been plenty of other things going on.

Leading up to Christmas, Daddy was very busy with the Christmas Eve-ish service at church while Mom was busy being an elf.  Maggie got shuffled around a little bit, but we are so grateful for all the friends that stepped up to help us out.
Thank goodness for technology
My grandma's health also began to decline more quickly.  Just a couple days before Christmas, she took a drastic turn for the worse.  This was devastating to me, as I realized just how stuck Maggie is in the state of Colorado.  I desperately wanted all three of us to be able to jump in the car and head back to spend the time with our family.  The reality was we had to resort to Skype to make it happen.  Surprisingly, Grandma seemed to rebound after a couple of days.  She has been taken off all her maintenance drugs and is only on morphine and anything for measures of comfort.  She was able to be taken back to her home, with a hospital bed in her living room, someone there round the clock, and hospice nurses coming in daily.

Big girl bed now!
Christmas day we spent moving from the temporary housing to our apartment.  We figured this way we would have a whole trailer load of "gifts" to open.  It worked out great and was so quiet around campus.  That afternoon, some of our sweet friends invited us over for Christmas dinner and playing cards.  We couldn't ask for better families to be taking us in during the holidays.

Since Christmas, we have been trying to get the apartment pulled together.  Man there has been a lot to unpack and find homes for.  Fortunately I feel like we are getting a bit closer.  Once we get it show ready, I will be sure to share the pictures.  A really cool thing we found out is that we are in the same exact apartment that some beloved friends from Iowa were in.  The Weavers were the first tenants in this exact same apartment and shared with me that they have many treasured memories here.  How cool to know that their home is now our home!!  The view from this apartment is awesome.  You can look right out to the mountains and a trail is just down a little path from our apartment.  Shawn is hoping it inspires him to get out there and work out a bit.  The sledding hill is also right outside Maggie's window.  Three siblings made a point to come welcome us to the neighborhood.  How sweet is that!  I think we are going to enjoy our new home and neighborhood.

Originally, we requested a 2 bedroom, but ended up with a 3 bedroom because that was what  was available.  Ironically (or God), another Realm family inquired about any Realm families that may have an extra bedroom.  So, we are "adopting" a 20 year old daughter.  Makayla currently only has a seizure about every 3-6 weeks, so she needs someone around all the time for the "just in case".  Her family is from Idaho and were all originally planning on moving down but are hoping this will help her develop a bit more independence.  So, now we have a 20 year old and a 20 month old (next week).  Hopefully this is a win-win.  She has a place, and we have a bit more help with all of Maggie's school, food prep, housework, etc.

Maggie couldn't be with us because of the laws
This weekend I was blessed to have the opportunity to make a QUICK trip back to Iowa.  Literally it was about 40 hours in total, but an absolutely wonderfully blessed and productive trip.  Thanks to a special individual, my trip home was paid for as a treat to my grandma.  And it was such a treat to both of us.  Grandma was extremely shocked when I walked in late Sunday evening.  I will forever treasure the sweet time Dad and I spent talking with Grandma from 1-3 am that morning.  Again Monday evening it was treasured time with Grandma and her sister.  I couldn't ask for a better "see ya later" visit with her.  My grandma has lived a very complete life and is more than ready to move on to eternity.  The thought that Grandma may very well get to see Maggie run and jump and play before us is crazy and of course brings tears to my eyes.  I have to admit that I am kind of jealous that Grandma gets to enter the gates of heaven soon and stand face to face with our Creator.  Praise God for the hope and perfection of eternity in heaven.
The go-getters at the Capitol

Since I was going back to Iowa, I figured I would make the most out of the trip and try to make some headway for legislative change regarding medical marijuana.  Monday evening, Dad and I met with the State Republican Senate leader, Bill Dix.  He was open to what we brought to the table and hearing our journey.  Regardless if he votes favorably or not, it was a pleasure meeting with him and I was delighted that it worked for us to meet up with him.  Then on Tuesday morning, prior to flying out of Des Moines, two other moms and I met with the Governor's policy adviser.  Again, I was just glad to have the opportunity to share our story.  After that, I also did an interview with WHO-TV.  They are actually working on a bigger segment regarding the medical use of marijuana.  It probably won't be aired until February, but it is a great opportunity for more exposure.  So, all in all, a GREAT trip.  I will be posting more about legislative stuff soon.  Hopefully there will be a lot more to talk about as bills get proposed this legislative session.

As for the Magsters, when I returned home, I noticed a few things.  Her spasms seemed a little less intense.  Woohoo!  Shawn had upped her CBD the day I left.  I have a feeling we are getting closer to her therapeutic dose.  She also seemed to have a few new sounds.  On top of that, now she is a stealth pooper.  She had a big messy surprise for Mommy after Daddy picked me up from the airport.  But, that is great improvement.  We used to know every time she pooed because it took so much strain and effort.  The fact that she can poo without us knowing means it is now a much easier process now!!  And yes..once again, we are very excited about poo!!

She also flashed some sweet smiles and even giggles the night I got home.  It has been since August since we have seen the sweet giggle coos!!  It wasn't particularly in response to anything, but wonderful to see!!

Other things...many have noticed that her nystagmus (jumping eyes) is not nearly as prominent.  More focus and attention in her eyes.  She is pulling herself off my shoulder much more.  This shows she is gaining more neck control and trunk control.  Though improving the strength is important, this is actually more of a neurological issue.  Her brain is sending the needed signals to her body for her to make this progress!!  Yippee!!

And, finally, we have given her the last dose of Zonisamide.  This was the first day since last fall that we have not given her that drug!  It is also the first time since last summer that she has only had 2 pharmaceuticals in her system!!!  Woot woot!  That's my girl...getting stronger and stronger and decreasing meds!!  #CWupdate

Deep in thought





3 comments:

  1. do you have instagram? i would love to follow her progress there! my daughter has IS too and we are SO interested in your journey with medical marijuana. our name on instagram is @mydanibear. your daughter is amazing!!!! SHE WILL TELL HER STORY ONE DAY and inspire millions. blessings! love, val

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  2. I'm sorry we share this is common. we do not do instagram, but we have a facebook page "Miracle 4 Maggie"

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  3. I see you have her in a big girl bed, is that right? How did you go about that? Is she mobile at all? If we put our sweetie in a bed she would roll off... any suggestions? Does Maggie walk or is she mobile? Sounds like you are all making small and yet critical doses of progress! We pray for you and your little angel girl.

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