As you have probably noticed, I have been a little quiet with blogging lately. If you know me, that means because there are not great successes to share. While at 3 months, we saw at least a 30% reduction in Maggie's seizures, since then, I can honestly say, there is not much worth sharing. I felt like we made 3 steps forward, but have gone 2 steps back. The positive is that we have still moved forward in all of this. For a while now, we have known we are not making the headway we would like to, but there are so many stinkin variables that we have been unsure what (if anything) we should change up. For the past few months, she has been working on these terrible 2 year molars. At times, it has been absolutely miserable. We have also been in the lllooooooooonnnnnnnggggggggggg process of weaning her off her 2nd pharmaceutical. In this wean process, we have had to stay on top of detoxing her liver with our manual therapy. The dilemma has been do we just continue to hold our own for a while until her teeth get in and we are weaned off the pharmas or do we change some things up now?? and beyond that, what do we change up???
There have been a few option we had been pondering. Finally, I took some of the oils into our therapy and had them help me "test" them on her for dosages and what to do. The conclusion they came up with was right on par with what I was feeling we needed to do, so that was very affirming. They did help me figure out the specifics a little more though.
So...our game plan over the next few weeks....
-Continue to the Sabril wean (we have about 12 weeks left as we stay the course)
-Instead of our IMT (therapy) every 2 weeks, we will go weekly for a while to stay on top of her liver detoxing and to continue to cover more ground
-Add THC-a to her mix. This is another form of cannabis oil. THC-a is a different cannabinoid in the plant that is anti-spasmodic. Another good friend of ours started on THC-a before starting CW (Charlotte's Web), and Millie's infantile spasms have essentially disappeared. For those wondering, THC-a is actually different that THC. We have started her at .02 ml (which is nearly nothing), working her up to 3x/day. Since we started, I am already seeing more smiles (and some laughter) again, and over all, she seems more content and her withitness is improving again. Encouraging and exciting!! Spasms?? Hard to tell. We'll probably plan to count again soon.
-And the final action plan is to decrease her CW to about 2/3 of where we currently are. Interestingly enough, as it builds up in their system, we are finding that kids are having better seizure control once they go back down to a lower dose. Hmmm...
-We also will be having PT, OT, and ST coming out to the home this week and will be getting evaluated next week at the Anchor Center (a premier vision therapy center in Denver)
So we are anxious to see how this changes will help her improve over the coming weeks. It'll be nice to feel like we are moving uphill again instead of just treading water.
In other news....I hate politics!
And....we are very excited to have family out here (lots of them!) over the coming weeks!!
Side note...Maggie's 2nd birthday is coming up and it's a PURPLE DAY. I never give enough heads up, but this time I am. Make sure your laundry is washed and ready for May 15th!
- Shawn and Rachael
- 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.
The past month/month and a half, I have been dwelling on some things. As a family, I feel like we have replaced praying for the BIG miracles that God can and will do in our lives with a simple tool that He has provided us. We have put our hope and stock in marijuana at the cost of continuing to expect to see God do even bigger things in and through Maggie. Don’t get me wrong here, we are delighted with the things we have been seeing with the oil and celebrate the progress she has made. However, marijuana is not Maggie’s miracle. It’s explainable, it has science behind it, and a purpose for why it works. A miracle is unexplainable to the point that we step back and say “It could only be God that did that”. The way in which God led us to Colorado…that could be considered a miracle. However, the cannabis is a tool in our repertoire, a God created tool that can do some pretty amazing things.
Early on in the journey we came up with “Miracle 4 Maggie”. Have we settled for the inch stones of progress (which are great) when God is waiting for us to ask Him to do true MIRACLES in her life?? Can He do the miracles without us asking?? By all means. I have a feeling though that if Maggie wakes up tomorrow seizure free, walking, and talking, or some variation of that, it would be easy for us to give the cannabis oil all the credit. We have been studying God’s GLORY the past few weeks at church.
God wants to do the inconceivable, the uncommon, the unexpected, the remarkable, the incomprehensible! God loves to do the unexplainable! Why? Because when God can be the only explanation for what occurs in our lives, something incredible always happens! GLORY!!
We will not see His glory until we are giving Him glory.
Will we praise Him when Maggie is healed, or will we say “look what the cannabis did”?? My hope and prayer is the first, but my sense is the last has been true lately. How can we shift our attention?? By drawing our attention to the One that can and will heal our little girl. By not allowing our prayers to be watered down to “God please let the marijuana help Maggie.” By petitioning Him for greater things that are unexplainable. By anticipating the true Miracles.
*****My ask for all of you is to join us in an effort to truly seek God and request some big things from Him. Please set an alarm on your phone for every Monday at 5:30 MST/6:30 CST/7:30 EST/4:30 PST. Allow that alarm to be a reminder to pray for BIG things for Maggie. Then, on the first Monday of the month (which is today…a little late notice this month), if you can gather with others at that time to prayer for Maggie, I know there is power in us coming together and praying together. While of course we want BIG prayers for Maggie, there is no need to limit it to just her. Allow it to be Miracle Prayers on Monday. For the locals, you can find Shawn, Maggie, and I in the student center on campus on the first Monday. Come join us and lay hands on her in prayer. Others, we would love to Skype in at times if you are joining with others in prayer. I anticipate that as we realign our hearts and put all our stock into the One that is more than capable, we will continue to see bigger and bigger things happen in her life. We will be able to look back and see the faithfulness and know that God honored that.*****
Maggie and I went to lots of doctor appointments, testing, etc. this past week. With the neurologist we sat and talked about all the blood tests that have been run and all the things that are within the normal range, or close enough that it’s not a big concern. At ophthalmology we talked about the structure all being normal. With the hearing screen, structurally, everything looked beautiful. YET… so much remains abnormal and unexplainable.
Maggie had been making great progress the first few months on the oil. Lately, it seems like she has been a little stagnant in progress, that we are just holding our own. Lots could be attributed to this…change in seasons, teething, moon patterns, pharma weans, cannabis oil building up in her system, not enough oil, the list goes on and on. There are so many variables and so many things that we can try to adjust, different parts of the plant we can introduce, etc. Often as parents, we look at kiddos with seizures and try to control this or that or the other. No doubt that we have to vigilant in watching the variables and trying to provide the best environment for her, BUT does my perceived ‘control’ really have any weight when compared to what God can and will do in her life!?!? It’s time to relinquish it all back to the One in complete control!! It’s an ongoing struggle to keep Him in the right place and more so, keep me in the right place, not trying to take back ‘control’. How many other areas do each of us need to do this in??
Hear me out in all of this. This does not change our course of action. It does not change us constantly trying to figure her out. What it does do is realign our hearts and our allegiance. It helps us place the power and authority in the right hands. And thus, when we give Him Glory, we will see His GLORY!!
p.s. I know it has been a long time since I have posted. In summary, not a lot has changed lately. Maggie's molars have been working on coming in. She's opinionated when she is hungry and becomes very demanding...like her daddy. Mommy is a board certified CNA and will begin getting paid soon. We had some friends come visit and they took Mommy back to Iowa for a quick visit. Mommy harassed some legislators to try to help open the door for critically ill Iowans. Daddy is trucking along with school. He had a scare with one of his mid-terms last week, but spent A LOT of time studying and having Mommy and Mags quiz him. He thinks he did well on it!!
Mark your calendars...If you are in the area. Maggie will finally be getting dedicated on May 11th. We will also have a birthday party for her that day at the park. (I know it's Mother's Day! We can celebrate all the Momma's too)