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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.

7.11.2014

More news

I suppose I am long overdue for an update.  I used to be so good at posting, but haven't been nearly as good since we've been in Colorado.  And this is where the exciting stuff takes place!!

Maggie Developments
Over the past couple of months, she has really seemed to take off with her cognitive awareness and physical movement.  When we put her down on her tummy, she wants to move.  Her arms are not yet up to speed with the rest of her body, but she gets her legs going and wants to crawl so badly.  She can rotate a complete 360 on her tummy, and not just one direction, she can go both ways.  Those legs get going and she ends up spinning herself around in a circle after some time.  She also has rolled over for me a couple of times.  Usually with slight assist.
video
Our therapists out her have been great.  One nice perk is that PT, OT, and Speech all come out to our home.  We still travel to the Springs (about an hour) weekly for the Integrative Manual Therapy and have been trying to get up to the Anchor School of the Blind (about 45 min) at least ever other week.  Maggie has been using some push activated toys.  We are working on getting her to push to activate so eventually she can activate a communication device/assisted technology.  The other day one of the therapists used the words fascinating to describe Maggie, which is a good description.  It is evident that she is trying to do stuff and process, it's just finding the best way for her to achieve what she wants.
video
A couple of weeks back we were on a little road trip.  In the back seat, she was kicking her little piano and just singing/talking away with giggles included.  Then this past weekend we took her swinging a couple of times.  Shawn posted the video, but the audio didn't record.  She was having a ball.  She would straighten her legs and just hoot and holler squeals of delight.  We were talking and this is the first time that we have a very direct correlation...we start swinging her....she displays pure delight.  I have never laughed with her so much as the one day in the swing.  She was SOO happy and funny!!  By the way, we are seeing smiles nearly every day now.  Not in direct response to anything we can tell, but she is at least happy in her body.

Medications
We are almost done with our 2nd wean.  Back in February when we started this wean, I was so discouraged that we were never going to be done with this medicine.  Now....we only have 1 1/2 weeks and we will be done with Sabril.  This is the $20,000 one that could cause peripheral vision loss.  It is specific for the Infantile Spasms, but we haven't noticed anything major during the wean.  As our neuro said, "If it's not doing what it's supposed to be doing, then there is no point in having it in her system".  Amen to that.
So....she was on three pharmas when we started the cannabis oil.  We weaned her off Zonisamide over the first 10 weeks, gave her body a month or two to adjust and then started this wean.  Once we are done with this one, we will have one more left...Keppra.  We'll give her the rest of July and all of August to let her body assimilate and finish detoxing the Sabril.  Then we'll start in on the Keppra wean.  She has been on Keppra since she was 7 weeks old and it can be associated with extreme mood issues.  The one good thing is that she has been on the same dose for the last 2 years, so it is likely she has outgrown that dose.  It could be a difficult wean or it could be an easy one....we'll just see and take it slow, staying on top of detoxing as much as we can.
As far as seizures and spasms, we are still seeing quite a few, but we are trying to be patient and wait until we are done weaning to really see what the cannabis is capable of.  Plus, then we can play around with the dosing a bit more to try to find her sweet spot.

Bun in the Oven
Yes....we are expecting.  Due date is November 25th....just in time for Thanksgiving.  Yesterday was the 20 week mark.  We had the big ultrasound yesterday and everything is looking good and seems to be going well.  It is a very active little bugger, much much more so than Maggie for sure.  No...we didn't find out the sex.  Shawn kept looking when the tech said to look away, but he didn't have a clue what he was looking at and I wouldn't trust him if he did think he knew!!  Yep....we are those people that wait.  I remember the suspense of Maggie's birth kept lots of people up till wee hours of the night to find out she was a girl.  At our 10 week appointment when we first heard the heartbeat, Maggie started chuckling.  It was so precious!
We were not particularly trying, but we also weren't really preventing.  Clearly, God thought we were ready for another.  Which I am grateful for, because I don't know that we would have ever been "ready".  I know many of you are curious about the likelihood of this baby having issues.  Doctors do suspect that Maggie's condition is genetic, though no one has provided us with the answers of how or why yet.  IF it is genetic, then there is up to a 25% chance that siblings would display it as well.  As someone told me, that's a 75% chance of not having any problems.  And, that is all IF her situations is purely genetic.  Shawn summarized it well when he made the announcement to friends and family.  Maggie's situation has more than taught us how to trust God and we will continue to trust Him with this little one too.

Depression
I have committed to being honest and transparent throughout my blog and try to in life in general.  This spring was rather difficult for me on the mental/emotional front.  I think there were a ton of contributing factors.  First of all, there was the chemical situation going on inside my body as it adapted to growing a new little being.  Also, the fatigue of not being able to do much.  Put that on top of knowing there is more I could be doing to help Maggie learn more, but not having the umph to do it.  Add in the failed legislative measure in Iowa that doesn't allow Maggie to go back to see family and just hanging out in the apartment most of the time.  There is no doubt that the biggest component was that the pregnancy brought up Maggie's abnormalities a little more and forced me to walk through some of the emotions that I never did.  Depression is very typical within special needs mommas and very prominent at the onset of the illness.  I really think God protected me from having to deal with it majorly the past 2 years because Maggie really needed me to be all hands on deck.  There was no time for mom to be checked out and having a pity party.  With things much more stable, I was able to acknowledge our non-typical child and work through more of the emotions to try to accept this.  There is no doubt I will continue to go in cycles off being more depressed at times, as I already have noticed it particularly when Maggie is not making as good of progress as we would like.  I am confident that identifying and naming it with the big D word is the first and biggest hurdle in fighting it.  Fortunately, when I was not yelling at my husband, he was good about trying to get me out for a walk or run.  And, I had already committed to teaching for VBS and leading a Bible Study over the summer.  These intentional acts helped provide some of the purpose that I needed, but I still need to be confident in my identity being solely in Christ alone, not all the other areas that I try to find my identity in.

Moving soon
Not sure where or when, but definitely soon.  Maggie is the first kid to get her parents kicked off campus.  It's crazy, but we completely understand.  A few weeks back we got called into a meeting with the president of the seminary and one of the legal guys.  The meeting went really well.  They both showed genuine concern for Maggie and the entire situation.  They were supportive of us as a family and the decisions we have to make to take care of Mags.  If they would have come in with a bad attitude or we would have, the meeting could have been drastically different, but I felt it was handled very well.  You could tell they had lost a lot of sleep over the issue trying to figure out how best to handle it.  Due to an annual audit, the president has to sign off on being in compliance with all federal laws (including being a drug free campus).  If he were to disclose Maggie's medicine then all federal student loans could be in jeopardy to the tune of $6M.  We had already began the process of looking for a house to buy, but this just upped the ante a little bit.  The market here is crazy...houses are listed and gone within a day and there was a bit of a sticker shock for us coming from Iowa and East TN.  Most likely we will be able to get a fixer upper for Shawn to invest some sweat equity into.  Hopefully we just don't bite off more than we can chew. :)  Ideally, we are hoping to be able to find something and get off campus by September.

I think this was enough to update for now.  I'm sure I missed some stuff, but I can always add more...

3 comments:

  1. I'm so glad you gave an update. Congratulations on your soon-to-be new addition to the family. Maggie's smile is beautiful to see! Thanks for sharing. :) Julie

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  2. Thanks for the thorough post, Rachael. We're all spread out now, but this makes you guys feel closer. Keep up the great work and faith - I know you will. Sending you and your beautiful family a big hug and lots of positive energy! Looking forward to hearing all your great news out of the next six months! ~Michelle

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  3. Love you. So many changes coming. I hope the baby comes on my birthday! And I am so glad that you like to wait to find out the sex. We did too.
    Many prayers for blessings to come.

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