Fundraising for Accessible Vehicle

I've shared a good bit about Chloe here on our blog.  She is one special girl.  In addition to her many health issues, she loves art.  She was experimenting with water colors and got to painting some birds. She was having a lot of fun with that.  And our son Conner said, Chloe you should do a bird for every month and make calendars with them!  What a great idea Conner Smith!!  So Chloe created a calendar.

And then I said let's sell them to help raise money for an accessible vehicle.  Chloe is now driving.  We share our accessible vehicle right now.  As she gets older and is getting out more, she is going to need her own accessible vehicle.  Accessible vehicles are outrageously expensive.  So we are in the beginning stages of fundraising for an accessible vehicle for her!

So...we are selling Chloe's calendars for $20.  I have included some examples of the artwork she has in her calendar!  We are trying to get a good idea of how many to order.  So if you are interested, please let us know.  We will get payment information out very soon.

Here is the payment information.  Please send a calendar request before paying.  I believe we will be informed, but I would rather be safe than sorry.

Accessible Vehicle Calendar Payment

I Don't Want to Preheat my Oven!

I have found myself in a waiting season lately.  Let me just be real honest, I don't like waiting seasons!  I am a doer!  I like to be busy.  I rarely sit down and relax.  (When I do, I'm probably sick!)  I want to solve problems.  I want to bring joy into sadness.  I like immediate answers to prayers...yes or no...no maybe later for me!  I don't want to preheat my oven!  I don't want to cook the potatoes in the microwave because they are not very good that way, but I don't want to wait hours for them to cook in the oven either.  I think when I boil this all down, I'm not a patient waiter!  I don't often wait gracefully!  And often if I'm having to wait, I'm going to exhaust myself trying to fix the problem!  And this isn't a new thing!  I wrote a speech for the speakers tournament when I was in high school about being patient!  It wasn't my forte years ago and it's still not my gifting!  One would think with as many seasons of waiting I have found myself in, I would have adjusted and would be able to do it beautifully right now!  Unfortunately, I haven't!  I still don't like waiting seasons!!!!  I despise them to be exact!  But yet God continues to say...wait patiently....be still Karen!   And when He says those words to me, I feel like Krisann trying to keep herself awake!  She flips and she flops, she puts her feet on the wall or in the air, she sits up, she lays upside down in the bed, she wants her back rubbed again, she needs a drink of water, she forgot something she needed to do, she needs to go to the bathroom, she tosses, she turns, she says I'm not sleepy, etc.  If you're a parent, I'm pretty sure that picture just resonated with you.  I find myself saying those same words God says to me....be still Krisann.  And I know if she would be still for 5 minutes, she would be asleep!  But her anxious driven body, just can't stop wiggling and thinking! That's exactly how I feel when God says be still Karen.  I flip, I flop, I say I don't like waiting, I try to move ahead and find all possible solutions, I mess things up because I'm pitching a fit about having to be still.  And God just simply whispers again, be still Karen!  Finally my body exhausts itself and I say fine....you got what you wanted God! I'm stuck on this sofa and I can't move...now what?  I'm waiting.  And God says, be still Karen.  God doesn't just want my physical actions, He wants my heart to be willing to be still too!  He wants me looking to Him for answers, not trying to fix things I can't fix.  And personally, I often get stuck in the exhausting myself trying to fix things most often!

In April, Zine and I swore up and down that we were done with chemo.  We weren't doing another treatment.  We even told our children we weren't doing anymore.  We were done!   In October, the pressure is on for that next chemo treatment in February.  The doctor is pushing hard.  Zine is second guessing our decision.  And my anxiety increases.  I need to know...are we doing this next chemo treatment or not?  The doctor hears my concern.  He heard my heart.  He responded.  In January we will do a MRI and see if there are any active lesions.  That will give us insight.  January???  Really?? Can we just do that now?  And the dr. says January.  God says...be still Karen.   Do you know how many times my heart has feared another round of chemo?  Do you know how many nights I have begged for Zine to have wisdom?  Do you know how many conversations I've had with Zine about whether the chemo has helped any or not at all?  And God says...be still Karen.  Don't look back at how hard that week of chemo was.  Don't look back at the hospital stays and emergencies that came after.  Be still Karen.  Know that I carried you through those chemo days and nights.  I carried you through 3 children with head lice and a husband with no immune system.  I was with you in rehab from a broken hip!  And if January brings the answer of another round of chemo, I will be in that as well.  Be still Karen.  Ahhh, how refreshing it is when I can bask in the knowing God was with me and will be with me rather than being in the fretting stage and anxiety driven thoughts!  Be still Karen.

Since August, Chloe has been really sick most all the time.  I want this smiling girl back!

Instead, I have a girl that looks like this most of the time!

I have been sent to hospital with her 4 or 5 times since August.  She has been admitted once.  We have tried everything we know to do for headaches.  Essential oils, caffeine, rest, heat, ice, different medicines, food diaries, headache diaries, and my girl continues to struggle.  And I simply want a girl that feels better!  I make decisions!  I communicate with doctors.  I read articles about headaches and possible treatments. I pray much.  I feel helpless to do anything to make her better.  This season definitely stinks!  I don't want to preheat the oven!  I want it magically to turn on at 350!  I don't want to wait for doctors appointments or for medicines to work, I want relief right now.  And God says...be still Karen.  When I am completely helpless to help my child, I really have nothing other to do than lean into God, allow His grace to wash over, and wait on God to bring healing by whatever means He chooses!  And in the meantime, I get to focus my time encouraging, loving, and comforting my girl!  Not fixing the problem, not finding possible solutions, but loving, encouraging, and comforting!  

I started treating my youngest child for anxiety.  We gradually increased her anxiety meds.  Unfortunately, as we slowly increased her medicine, her behavior became very very impulsive.  I thought she was going through some incredibly difficult stage.  I did not equate the behavior with the medicine.  And as I was waiting for the stage to pass, I reached the end of my rope with her.  I had no clue how to raise my 7 year old child.  I'm sure people think sometimes, that girl needs some discipline.  But really people, I have disciplined this child.  In my desperation one day, this happened to her room.

And my study looked like this!

I have discovered I can't do a thing with an extremely impulsive child other than pray!  She had a check up with psychiatrist, and I shared some of the things I had been dealing with and the psychiatrist immediately said, everything you just said to me equals extreme impulsiveness.  I think the anxiety medicine has had the opposite effects.  We need to wean her off of it and try another one.  And as we have been weaning her off, the extreme impulsiveness has gotten much much better.  But now, it is time to start a new medicine and I must remain in this waiting period.  I just want my girl back that sleeps in her bed, that is fun loving and not cry all the time, that doesn't stress out over every little thing, that isn't afraid when questioned, that says those statements that just make you laugh out loud, and just has a sweet sweet spirit about her all the time!  But in this season of waiting, I get to practice loving unconditionally (even when she is unloveable), giving grace and depending on grace, and watching what God is going to do in her life!

And y'all, this is not all the waiting seasons.  My dad must have knee surgery and I have encountered some delays along the way that I am just having to trust God with.  I think my mom has another UTI. Tried to get dr. to give home health orders last week to check and long story short those orders didn't get signed and it was a holiday week!  So tomorrow I have to work on that again.  I am in a waiting season as I watch God work in a relationship that Zine and I have been providing some counseling to and trusting that He is going to bring unity and healing in that relationship.  And there is another tender waiting place that I'm not sharing in writing but am definitely having to trust God in that place in this season!  

So plain and simple, for someone who gets frustrated when she has to wait on her oven to preheat, this has proven to be challenging time of waiting!  But the one word that keeps coming to my mind repeatedly in this season is hope!  I have hope!  These seasons will change, these places of waiting will come to an end and God will do a new thing in those places.  These healings of anxiety, headaches, MS, etc. most definitely will happen at some point!!  And how appropriate that as this is the first Sunday of advent, that is the word that has been stuck in my mind!  I'm pretty certain that God has placed that word in my heart on purpose!  I have hope!  Even amidst the waiting, I have hope!  The oven will get hot!  My potatoes will get done!  And God is at work!  And in the waiting, I can have a renewed strength.  I don't have to be weary!  I have hope!

Our Medical Day in Ohio

I drove ALL day Tuesday.  I slept very little last night!  There is this blue light on the ceiling that has lit up our entire room!!  I said I had my own stars in my room!  But nonetheless, today was clinic day!

How can one be in a bad mood when the inside of the hospital here looks like this??

Dr. M and his entire staff is awesome!  Too bad we won't be here next week.  Next week Dr. M will be Jack Hanna the zookeeper and all the rest of the staff are dressing up as animals!  So they will all be Jack Hanna's animals!  At least we got to hear about it!  But really, even the guy that registers us at the front desk is always super duper nice.  Very personable!  And Very Very Attentive!!    There's no waiting here.  Almost immediately, you are called to the back.

The nurse then takes weight, height, blood pressure, etc. and she is super chatty as well!  She then takes you to your room for the day.  And from that point on, there is always someone in your room!  First is always neurology!  That's Dr. M and his wonderful assistant Rachel.  Dr. M is 74 or 75 and is the world's expert in Duchenne Muscular Dystrophy.  And we love Rachel!  She is super super smart.  She is great at communicating with us each visit and she is who we email in between visits.    They were very assertive when it came to Chloe's headaches.  Someone who understands what effects a migraine can have on a kid with  muscular dystrophy.  They are starting Chloe on some different meds for headaches.  We are to check back in a month with them and update.  At that point, if it hasn't worked, then they will change a medicine.  In three months if we are still struggling, then they will make her an appt for next time we come with a team of doctors here that work with patients who struggle with difficult headaches.  So...we have a plan!  Thank goodness.  That will help anyone's outlook when you know the plan is and what to expect.  They also indeed verified that what was on her MRI is not from muscular dystrophy!  Her MRI will be repeated in December!  And then I guess we will go from there!

As soon as one person leaves, another person comes in.  And it is that way for 3 to 4  hours!!  You are never alone in your room.  They accomplish so much here.  It always amazes me.  Chloe's strength is still good.  Her hips and shoulders are weaker than everything else.  But we've always known that.  But as far as strength goes, initially she has a lot of strength.  But then as you expect her to keep repeating the same motion, the strength goes away quickly.  This is very common in manifesting carriers.  Fatigue, pain, and heart issues seem to be at the top of the list of symptoms for manifesting carriers.  Then fatigue leads to weakness!   We have learned that they see other manifesting carriers here as well!  So it's nice to know you're not the only one!!

One bummer today and that is it looks like Chloe is going to have to do ANOTHER sleep study!  Ugh!!!!  The pulmonologist believes she needs a bi pap machine instead of a C pap machine!!  So he is going to talk to our dr in Madison about this.  We may have to return here to complete a sleep study.  But hopefully, he can work details out with our drs at home.  Her sleeping issues could be a trigger for those headaches as well!  So we need to get it under control.  Right now she is arousing 10 times an hour while she sleeps with what they call respiratory effort arousals.  So I'm thinking if I woke up 10 times an hour I probably would be tired all the time too!

The cardiologist is also upping her heart medicine and will repeat her cardiac MRI next time we come!

Let's see she also saw three different therapists and had various evaluations today on top of three specialty doctors!  One of which we saw twice!  Once before some testing and once after the testing!

We did have some time this afternoon late to have some time outside in the park here at the Ronald McDonald House!

At least if you have to spend time at Nationwide Children's Hospital, there is a wonderful Ronald McDonald House to enjoyt!  We also went to the play room.  And while Krisann played, Chloe and I worked on some craft projects to leave here for the house!  Chloe can't go on mission trips, but no worries, she does mission projects every time she comes here!  This time she is leaving Create a Character bags that have some play dough along with googly eyes and pipe cleaners.  She is also leaving boxes of lego patterns cards with a few legos in each box.  So the kids can use the legos and try to recreate the patterns!  And lastly, she made the workers' desks here a sticky note holder!  I can't wait for her to give them to the office in the morning.

This girl has such a heart for others!  And I think it is absolutely wonderful that a place that has blessed us so much over the past two years is a place where she can leave a touch of her own blessings!

Pray for her as medicine changes are very difficult for her!  So to be making several medicine changes is going to be hard!

We are very, very tired.  A long day of driving yesterday and a long day of doctors appts today.  But the trip has been smooth so far!  It has not been stressful at all!  We are supposed to have storms here tonight.  But I don't know if we will even hear them in this place!  We are on the bottom floor!  So I'm thinking it could rain and we wouldn't know!  But if it thunders very loud...we might hear that??!!  

I have two girls that are ready for the lights to be turned off!  Thanks for praying for us today!

Our next medical adventure...

So far, this blog has centered around our journey with MS.  We have another journey that we've lived with for 13 years and that's our journey in the world of Muscular Dystrophy.  In many ways, our journey with MD, has helped prepare us for our journey with MS.  Although they are two totally different diseases, in some ways, they look similar.  So I'm very thankful that doctors, specialists, wheelchairs, handicap accessibility knowledge, etc. were things we had already learned!  To be where we are today, with no prior knowledge would make this season a hundred times worse if we were having to educate ourselves at the same time!  I can't even imagine!

Our now 14 year old daughter was born totally healthy!  Or at least we thought!  But then as her friends began to develop in their motor skills, we began to see a difference in Chloe's abilities.  As I was gathering records just two weeks ago for an upcoming appt I was reminded in great detail of her accomplishments or lack of accomplishments as an infant.  Some of those that stuck out to me is Chloe didn't roll over until she was 8 months old. Many of her friends were crawling and she was just learning to roll over.  Chloe made no babbling sounds until she was a little over 10 months old.  But trust me, she caught up!  She has no problem saying words now!   She definitely wasn't walking when she turned a year old.  No where even close to walking!  She was just learning to sit up without falling over!  At 15 months old, she still wasn't eating food!  Her main source of nutrition was still from a bottle! So needless to say our early days with Chloe were full of physical, occupational and speech therapy.

At 15 months old, she was sent to Atlanta, GA where she saw a specialist in Mitochondrial Disorders.  As a result of that doctors appt, followed by a muscle biopsy, we eventually received her diagnosis of being a Manifesting Carrier of Duchenne Muscular Dystrophy.  That, in itself, is a very rare diagnosis.  DMD is a boy's disease as it is an X-linked disease.  A female has two X's so if one X is flawed, typically the good X will be the working X!    However, research has now proven that it does indeed affect girls.

Being a Manifesting Carrier, no one has ever had any insight into what Chloe's progression would look like.  Today she struggles immensely with muscle spasms!  She takes a muscle relaxant to help loosen her muscles and help with the pain.  If I took as much as she takes, I would not emerge from the bed for a week or more just with one dose!  But...it keeps her going!  She still walks short distances.  She has issues with picking up heavy items such as a gallon jug.  Pouring from a full gallon is very difficult and at times impossible.  She struggles with muscle fatigue so things like washing her hair is very difficult for her where she has to hold her arms up for awhile so I wash her hair.  We have figured a way she can now dry her own hair! Which gives her some independence.  Then I typically come back and straighten her hair.  She tires exceptionally easy so therefore uses a wheelchair to aide in the fatigue level.  She has muscle pain all the time.  Some days, the pain is so bad, she struggles to move around.  Other days, she puts her determined spirit into action and does whatever it is she desires to do.  And anyone that knows her can say, she's not only determined she has a fighting spirit!  We love that about her...most days!!

Two years ago, she was diagnosed with a movement disorder.  To our knowledge, a movement disorder and muscular dystrophy are not connected.  A year ago, she was also treated for the second time for depression.  The past year and half has been a battle to get her medicines regulated and able to get her on a more stable ground emotionally.  But we have definitely made progress!

Today, we are preparing to travel to Nationwide Children's Hospital in Columbus, Ohio.  There she will see a specialist in Duchenne Muscular Dystrophy.  He is quite the famous doctor to say the least.  I read about him all the time in the MDA's Quest Magazine.  We fly on Tuesday morning into Columbus, OH.  The goal of this trip is to see if there are new things out there that we should try, to see if he can give any prognosis for how this disease will progress, and to obtain some guidance on the drugs she is now taking and what we need to do in the future.  Our next medical adventure awaits us there...

I have said before, music speaks to my heart all the time!! I have a friend who sends me songs to listen to as she knows it's a way to my heart!  She sent me this song and it has captivated my heart right now.  And it is so true for where I am.  I must learn to stop holding on and just be held!  Just wanted to share!

Just Be Held by Casting Crowns