Ohio Results

We have been coming here for one year now.  We have a world renowned doctor in muscular dystrophy.  With numerous medicine changes over the past year we have helped Chloe feel better!  Her pain is much more controlled.  For years this child has lived in pain.  And to hear her say she doesn't have pain at times is an amazing gift!

However, in the past three months I have seen her fatigue level increase.  She seems tired a lot!  I thought it might be because she was more active since she felt better.  I have wondered if it literally was mind over matter.  Chloe wants to be normal and Chloe has always been stubborn so is she just sucking it up and moving forward?  This is the child that when she was little you could explain to her if she did something it would be disobeying and she would get a spanking...so we would say...do you want to obey or disobey?  Her response...I want to disobey!  Stubborn child!!  :-)   I have also wondered if her fatigue level was emotional related.  We have had a ton of stuff going on in our family the past few months.  We have discussed that possibility with counselor and psychiatrist as well.  But once again, no one has really known for sure what was causing it.  Some days, she can get up and two hours later be sound asleep on the sofa or in her bed.  Some people have just said she is a teenager you know!  But my heart has been a bit concerned.

We travelled here on Monday evening.  On Tuesday, she had some big cardiac testing done.  And today we have spent with doctors and therapists.  Let's see...neuromuscular doctor, cardiologist, physical therapist, occupational therapist...the list goes on!  You can see a lot of medical people here in one day!  Thursday we will begin our journey home!

We learned a couple of things today.  Her skeletal muscles are stronger due to the meds they have had her on.  Thus she hasn't used her chair as much lately.  It is obvious that Dr. M has researched a lot exactly what to do for Chloe!  He educates us more each time we come!  I knew when he was in our room today he had some concerns about Chloe's heart.  He had not seen her results from yesterday but made it very clear that for carriers of DMD, the heart was a major issue and definitely wondered if the fatigue was heart related.  He said I will be interested to know what those tests show.  Thats the game changer for you he said!   And....what we learned...the game did change!  The cardiologist came and explained to us that in DMD manifesting carriers, what they start seeing in their teenage years is scar tissue start developing around the heart.  Their heart just has to work so much harder and the disease seems to really affect the Manifesting Carriers hearts across the board.  And that is exactly what Chloe's heart has done.  It has developed some scar tissue around it.  And it will continue to develop more and more as the disease works in her body.   So what do you do for it...

If I understand correctly there is no fix for it.  But...they are starting her on heart medicine that will help her heart not work as hard so that hopefully by doing that, it will slow the scar tissue build up!  The cardiologist did a fantastic job at relaying this information to Chloe.  Dr. C didn't make Chloe feel like there was another thing wrong with her.  She kept telling her she was doing great.  And we were just going to take some more medicine to add to her already handful of pills!  We will start low and we will increase it in six months.  In another year, they will do these cardiac tests again and will compare.  A year ago, she had no scar tissue.  But I can't begin to explain how absolutely wonderful the doctor was.  I really, really like Dr. C.  They did do an EKG today and they have Chloe on a heart monitor until we leave in the morning!  So they are really checking her heart out well!

So now we have answers as to why Chloe has begun to nap a lot more.  Her heart is just working so hard!!  She didn't really respond emotionally at all. But the doctor was very matter of fact and non emotional which was good!  And we have kept busy this evening crafting away.  Fun with Fran happens here once a week and we love her craft projects she brings each week!  But just a few minutes ago, Chloe said something which let me know she was thinking about what all she heard and it was beginning to sink in.

And we finally went inside the princess room this week!  Totally enjoyed our time in the princess room.  I made the girls laugh.  Krisann finally said my tummy hurts from laughing so hard.  And it was all of a sudden that I realized that Krisann hasn't really laughed hard in a long time!  I told her she needed to do that more often!

 And the night would not be complete without sharing Krisann's rendition of me!  Zine said the only thing wrong with it was he had NEVER known me to wear heels!

We are supposed to fly out of here at 10:23 in the morning which is 9:23 CT.   So we will have to get up and get going in the morning!  Please pray that we would not have any delays and that our layover time would pass quickly!  And pray for the girls.  After our flight here....I might have some uncertainties.  Still don't know why Chloe just lost it emotionally on the plane.  And definitely don't understand Krisann being afraid!

Zine has appt in Cullman on Friday morning!  So you can pray for that as well.  I'm ready to be back home with my hubby!  I haven't enjoyed being away from him.  But am grateful for Conner who has been filling in for me and taking good care of his dad!  Zine even went to science class with Conner this week in my absence!  So they have had some dad and son bonding time to say the least!

I didn't say it....

This is too good not to share.   It is a blog post from Mundane Faithfulness entitled "How to Live Out Long Term Suffering With Others".  This spoke a word that my heart feels all the time...

"Dear Church, dear people who love Jesus, dear friends, this is a message from the depths of my heart. It might sound harsh, but I mean it with so much love: Stop it. Stop. Trying. To. Fix. Each. Other....Our job is to love. Listen. Support. And that might be it...Kara wasn’t healed on this earth. It wasn’t because Kara was a sinner. (Of course she was a sinner, but that wasn’t why her healing didn’t happen here.) It wasn’t because she didn’t have enough faith. Kara wasn’t healed on this earth because that is the story God wrote for her....Please do not say Jesus is going to heal you, I just know it.

Have you tried this?

Maybe if you had more faith.

Please.

Please do listen. Hear their heart. Take them a meal or a coffee. Send them a text that says, I know this is hard and I love you. Pick up their kids on the hard days. Choose them in their suffering."

"...can you imagine being the person who so desperately wants a miracle but it’s not handed to them? They do not need our reminder that God can do anything. They know, and they want it so badly it’s painful. But if that is not the story God is writing for them, and if that miracle doesn’t come, they are stuck in the day to day. How do I do this? Today? How do I honor God in this path that I don’t want? That I want to punch in the face? I am not grateful for this suffering! Do you hear me, God? I want the miracle.  And if it doesn’t come, they say, Not my will, but yours. They bow their heads and choose another day of gratefulness and joy even in the midst of their suffering."

And this my friends....echoes my heart.  We don't want people to try to fix our suffering.  We want people to listen and love.  And not fixing is hard...because I used to be a fixer as well.  I hope that when I encounter others now...I'm not a fixer.  My pastor told me one day...Karen ask people if this is a word from the Lord or is this their opinion when they are giving you advice.  We want to be about listening to the Lord's voice and not what other people think they would do! I'm not quite that bold and told him such so he said, play the blame game, let me be your alibi...tell them my pastor wants me to ask you if that is a word from the Lord that you and He have spent much time in prayer over or is this how you think would handle this suffering?  I haven't had that conversation with anyone but the day may happen!  Because lots of people want to fix.  And this article and our pastor speaks so clearly what people with long term illnesses need.

It also echoes the cry of my heart...first a miracle, if not a miracle...then gratefulness and joy in the midst of my suffering!

I used to think I might be bitter towards God when people would say things like God is going to heal Zine/Chloe.  I just know He is going to.   And I want to yell "shut up."  I used to think my faith was weak or maybe even I wasn't a Christian because I doubted God's goodness or His promises.  I was supposed to be content in all things, right?  And then one day in the middle of a real struggle, because not only did Satan attack me in that area, I saw him attack my children and my husband in the same area.  And in the middle of this struggle, I get this text from a sweet friend reminding me that Isaiah 1:18 says...come now let us reason together says the Lord!  Reason together means argue it  out.  So....let's just say we've got to do a lot of arguing it out....and probably have a lot more to do.  But we are not terrible Christians.  We are most definitely sinners and we most definitely make mistakes...but sinners are most definitely Christians!  But we also can look at our days (most days) with intentional gratefulness.  We have to work on the joy part a lot of days!  But that intentional gratefulness,  that difficult joy, and that arguing out, is changing and transforming us daily!

Yes the struggle is real everyday.  But in the struggle...we are

My friend introduced me to bitmoji and I know I'm a little slow with the app....but I did like the purple hair girl I made!!  :-)

Just an update from appts today

So we survived Monday!  

Zine has been released to start putting some weight on that right leg. But we haven't tried today. Gotta have Conner and I here at same time or a PT and I here. Needless to say...he won't be moving around too much just yet. But it will be helpful when we transfer to know he can use that foot if he wants! The doctor also strongly recommended that we transition our vehicle to hand controls and not foot controls. That wasn't blessing to hear!! But we know he is correct. The goal in the near future...to be able to maneuver enough that we can get rid of this dog gone hospital bed and have our bed back!!! It has been a LONG time since we have slept in our bed. As a matter of fact, neither of us have slept in our bed since March 18! So...if we're making goals...that's first on the list!!

I made it to my nutritionist appointment as well! This nutritionist is so helpful. She lays me out a plan a little at the time. And she works within my crazy eating tastes! Neither she nor I was as pleased today as we hoped to be. We had hoped their would be some weight gain..but nope there was none today. But...there have been huge improvements and she's getting a clearer picture of my struggles. Some days I do fairly well eating then other days when the stress is high or the day is busy, my eating is way off. She and I both see it as we look back over the past two weeks in detail. I told her today, I just needed someone to hold my hand and walk me through this...I felt like a 5 year old. And she said... you do indeed need people to walk you through this and hold your hand. You need people to care for Karen! And....she said...when people care for Karen then maybe Karen will start taking care of herself. Because that's the big issue here is Karen is so busy taking care of other people that she doesn't take care of herself. And...we all know...that Karen is not good at letting people care for her. So...we have some definite faulty thought patterns that we must work through! And she was totally correct in everything she said. I cannot argue! She also said that my eating issues would never go away because my stress was not going away! Chances are I will never be back to where I was before all this started! But...the important thing is that I get healthy! So...that's what we are working towards. Not gaining weight but rather, a healthier Karen.

You can pray for us as we begin the process of moving from short term disability to long term disability. Pray that everything works out quickly! We have begun that process! From health insurance to disability claims to approvals to a sundry of other things...the chaos has begun. And we are trusting that God is going to work on our behalf in this process and that as we make decisions that we know NOTHING about that they would be the right decisions!

Just thought I'd post a quick update!  

Doctors Doctors and More Doctors...Embracing a busy week

As I look forward into this week and next week, I am so glad that we have had a peaceful weekend together. And I'm so thankful for a worship service that we all attended today for the first time since January 31. We had a little outside lunch at McAlister's after church. It was so refreshing! And I just have to say...we have been through hell and back since Feb. 1. But through these last few months, God has grown Zine and mine relationship in sweet ways! God has been working in both our lives. One day we will be ready to share what God has done and is doing!

I'm preparing now for a whirlwind of activity over the next two weeks. It's going to be one of those seasons where God is going to have to sustain my weary body.

Monday morning we have a follow up with the orthopedic surgeon. Not sure exactly what to expect as we've only seen this doctor in the hospital. But pray for us as we go. Pray that the dr. will have great wisdom into Zine's healing process.  I will follow that up with a visit to the nutritionist who is helping me with my eating issues. So Monday will be busy!  

On Tuesday, Chloe has appt with occupational therapist.

And Wednesday, Zine has a follow up with the urologist. He seems to be keeping a UTI these days. And that could have attributed to a very long night he had on Tuesday of this past week. He had what they call MS Hug. The only way he can describe it is to think of someone coming up and hugging/squeezing you really really hard and never letting go. It lasted so long on Tuesday that we resorted to ice packs to try to help with the symptoms!

And then he woke up at 3:00 in the morning with another MS hug. Needless to say, these leave him feeling really bad. So the issue of constant UTIs must be addressed.

On Thursday, Chloe has counseling.

On Friday, Chloe has appt with psychiatrist. And Zine and I must make a trip to the Cancer Center for his port to be flushed.

And never fear....the following week...I will be making a trip to Ohio with Chloe where she will have her big cardiac MRI on Tuesday and then on Wednesday will see a gazillion doctors and therapists. Will return home on Thursday night and Zine has an appt on Friday in Cullman!

Whew...just a glance at what's coming up for us! So....I think you can continue to pray for us that God would continue to work in our hearts and that we would learn all He has for us to learn. And...pray for His sustaining grace as we conquer the many medical appointments on the horizon. We love each of you that follow our life saga. And we are so grateful for the prayers you offer on our behalf!

Ohana Family

 Conner drew this picture in 2014!  And I still LOVE it.  First of all, I love Lilo and Stitch.  It really is one of my favorite Disney movies!  (And I love The Little Mermaid too!!!)  But this picture reminds me of what God has done in my family over the last few years.   Early in our family, we were inseparable.  I remember taking Conner to soccer practice one morning and my friend said I have never seen you without the other half of your family!  And the truth was, we rarely did things apart!  Two parents, two kids, wonderful life!  Perfect....by no means!  But happy and content despite Conner having an immune deficiency and Chloe have muscular dystrophy.

Now...we've added a third child!  Unexpected blessing for sure!  And we've added a whole lot of heart ache!  The happy and content has definitely disappeared at times.  We are totally different people than we were a few years ago.  We are totally different people than we were one month ago!  Life has a way of changing us as we go through trials!  But there is something that has not changed...we are family!  And we have continued to stick together!

We have raised our children much differently than some.  We've been honest with each other and very open with each other over the struggles and the joys.  We've not protected our kids from heartache.  We've encouraged them to share their emotions.  Our relationships with each other are safe places to share tender moments.  And indeed, that has happened over the past month!  Chloe has comforted Krisann a lot!  Why...because she's been taught to do that and has allowed herself to be comforted.  Krisann just last night asked Conner to pray for her.  Why was that comfortable...because that is how we've lived our lives.   Conner has showed compassion for me over the past month.  But also quick to call me or Zine out on lies that we are believing.  Why?  Because he's experienced that from us!

One of the greatest heartaches and one of the greatest blessings is being a family and sticking together!  Just this week I reminded Zine that as much as he loved his children and as much as he loved me, he was loved that much in return.  Blessing and heartache!  Just this week, I had the blessing and the heartache to listen to Chloe wrestle with her faith.  I just allowed her to be honest and encouraged her to be honest with herself.  I've wrestled over the last year with the same things she's wrestling with now.    Just yesterday, I held Krisann while she had a little angry meltdown over a small thing. My entire family gets this idea...when your anxiety and emotional cup is so full that the least little thing spills it over in anger or frustration or tears upon tears.  But through all these things, family remains!

And over the last few months, we've learned that we have some friends that are indeed family!  Michael and Heather Walker have been family!  They have walked with us through some very dark times.  They have encouraged us in our faith and they have wept and prayed with and for us.  They have showed us the hard truth at times.  They have loved us when we were definitely unloveable!  They can hug us until our walls fall down and our emotions are released for a bit in their arms!  They have inconvenienced themselves for us at times.  One night in my emotional breakdown, Michael even recognized there was nothing he could do to reach my heart...it was a God size task and I'm sure it was one hard thing to walk away and leave me sobbing.  I truly do not think we have ever been cared for more deeply by anyone.  We continue to learn more about how God loves us through those two!  I hope that one day Zine and I and our children will be those friends that know how to move beyond friends to family in our love for others!

Doug and Nan Taylor have crossed over that friend zone to family zone! Doug literally brought me dinner almost every night we were in rehab.  Nan has this ability to walk in my home and make herself at home.  She can do my laundry, clean my house, and I have learned to be totally comfortable with her doing that.  I could sit on my sofa and watch Nan do those things without reservations.  They have loved our children through the past months as well!  They are not afraid to ask hard questions.  Zine likes to own conversations because then he has control over it!  But Doug can very gently override Zine and ask him personal questions to check in on him emotionally.  And Zine responds openly!

Becci and Noel DeFrank have crossed over from friends to family quite a while ago.  Those two have such huge servant hearts!  Noel and Becci have been the ones we have relied on physically.  They have kept Krisann.  Poor Noel even took Krisann shopping.  We won't talk about whether the outfit matched or not!  :-)  They have fixed things in my home.  They have organized care for us.  They have provided insight into situations that no one else even knew about.  They have researched many things for us!  They have given us wisdom on more than one occasion!  I've watched Chloe even open up to them at times and I've watched Noel love my big girl well!  They've let us be real with them.  They are not afraid of our tears.  They have not been intimidated by our hospital rooms.  They have not been offended when we haven't been very nice!  Or at least I don't think they have!!!  :-)  They have loved us like brothers and sisters and they are family!

I am always hesitant to mention people by name.  I am always afraid I will hurt someone else's feelings.  The truth is I know I have some friends that keep me girded in prayer.  The truth is I know we have aunts and uncles and brothers and parents who love us dearly and have loved us well.  The truth is I know there are many people I can call and they would come and help and assist.  The truth is, especially for my big kids, they have individuals loving and pouring into them.  The truth is many people have loved us well.  Many people have done many things.  And I'm sure I don't even know all that has been done because since January I have walked around in a fog.  But there's a difference between friends and family!  I'm so glad God has sent us family that know exactly what we need and are not afraid to move beyond convenient and comfortable to be our family.  We do not feel like we are their projects!  So often we feel that we are simply a mission project for others!  But these have had a way to allow us to be real, to care for our needs and for our emotions at the same time.  They have always been available!   They've not been there for one season and gone for another. And we've had lots of seasons lately!   And they have allowed us to share in their heartache while we are going through our own struggles.  I often wonder if that's what made us family!  They haven't said...I know your family is going through so much that I shouldn't even mention my problems.  They haven't distanced themselves from us or allowed us to distance ourselves from them.  Instead, they've shared openly with us in the middle of our own turmoil and chaos and they have not allowed us to deny our shut down with them!

Ohana means family!  And I'm so grateful not only for my immediate family but for the family that God has given us over the past few months!  And I'm watching how God is orchestrating and changing even more friends to family!  One of which, I would consider a long time friend shared lunch with me the other day and for the first time in a long time, she talked to me like a sister.   We talked about a struggle she had.  We talked about how her desire was to fix my problems.  And how she was trying to learn to remove herself from the situations and be more in tune with what God desired.  I was so grateful for that lunch. It gave me hope of a friendship becoming family!   Even this past week, God has even been interweaving our lives with another couple and we are feeling like they take on sort of a parenting love for us.  No doubt, that God is going to grow this family of ours!  Why am I certain?  Because we are learning to share our hearts and lives openly, and we are learning to receive love freely from others!  As Heather says, Karen just think, you loved people well before all this but just think how much more you're going to be able to love people when you learn to receive freely!  This is indeed a journey to learn to accept love!  But we love adding to our family!  Ohana means family and family means nobody gets left behind or forgotten!

Trying to find new normal

We got home Thursday afternoon late.  Zine and I both were very down emotionally.  We were glad to be home in some ways!  However, it spilled over our emotional cup.  We were indeed home so everything should settle down, right?  Well, what we realized is that life definitely isn't the way it used to be.  So we struggled emotionally.

Conner was able to leave for the evening and have an evening away.  Chloe spent the night in her room just vegging.  And Krisann spent it in my lap saying mom....mom....mom.  I counted in 1 minute she said mom 10 times.  I have no clue how many times I heard mom over those hours.  She was so excited we were coming home.  She had arranged everything for our welcome home.  A game and a movie.  She even put drinks on the island and popcorn.  Then we were all so tired and emotionally spent we literally were not able to do her plan.  At bedtime, she was heartbroken!  I felt so bad!  But none of us could do it!  We were all spent.

We made one transfer at home that night.  From his wheelchair to the bed and it went seamlessly!  He continues to have pain and be uncomfortable.  But he slept well Thursday night.  Friday we managed our first shower.  And we did that pretty well too!  I'm sure we will improve our system as we go through these next weeks/months.  But for the first time here, I thought things went well.  But man oh man, my body was exhausted when we were done.

Friday after the shower I think we just all worked on recovering.  I did some minor decluttering.   When Conner got home from work I ran a couple of errands...I think.  I truly can't remember at this very moment.  But I do know Friday night was not a great night.  Even in the middle of the night I gave him pain meds.  Saturday he seemed a bit more alert and awake.  Home health came out and did their intake.  Took them 2 and half hours.  He was less than thrilled.  The idea that at 41 years old he is having home health does not encourage him one bit.

Some friends just came and had dinner and hung out with us on Saturday afternoon.  We didn't talk about emotional stuff.  We didn't have in depth conversations.  We just hung out!!  We can't wait until we feel like being fun and partying again.  Oh how I find myself praying, that we will find that fun, light hearted spirit again!!

Zine is ready to go to bed by 8:00.  Last night we were about 9 getting him there and transferring when he is tired is not a good thing.  We had our first bad transfer last night!  It was not pretty at all!  But....the good news is....we didn't have to call for help and we managed it despite the bad transfer.  I think I hurt his hip trying to keep him on the board and on the bed.  But...together we managed!  My biggest fear...he's going to get somewhere and we won't be able to transfer back and I will have to call for back up.  I know we have lots of friends that would come...it's just scary and frustrating when you get to that point!

I do hope to try to go back to work this week...hopefully on Tuesday.  After 13 nights in the hospital/rehab, and trying to find a new normal back at home...the idea of going back to work is very intimidating to me.  I don't know if I will be able to handle it all but I don't know until I try!  I'm also thankful that my FPA family has been so accommodating and sweet!  This has definitely not been the best of school years to say the least on my part!

We will be needing some men on occasion to come and sit with Zine.  We can not leave him alone for extended period of time.  He doesn't like that idea but he does not need to transfer alone.  And as sure as we left him by himself, Mother Nature would call!  So, I am trying to arrange my schedule so that Conner or I are here...but depending on Conner's work schedule, that's not always going to happen.  So...if you'd like to have a turn coming and visiting with Zine for an hour or two, please let us know! Each week will be different.  So we will just have to ask people as the need arises.  I know twice this week Conner and my schedules are going to overlap being away.  Did you all hear that...we will just have to ask!!!???  Yes, those words came out of my mouth!  I've gotten better about asking!  And I'm so glad to have an army of people who are willing to come and help and love!  We are truly blessed!!

So...all that to say...we are still adjusting and this week will be more adjusting as we begin to have home health nurses and therapists coming and going.   Please pray for endurance for everyone!  It is tiring for us.  It is so emotionally difficult for Zine.  We joke that at least he can feed and groom himself and he can drive his wheelchair by himself...it could always be worse!   Literally those are about the only three things he can do without help!  And that is very, very hard for him.  So continue to pray that God would give him purpose.  That his spirits would be lifted and that feelings of guilt would not have any place to reside in his heart.  Pray for me to be physically strengthened.  Pray for safety when transferring.  Pray for our kiddos as they are fairing pretty well, but we know it takes a toll on them as well.  And pray that by the weeks end, we will have a better grasp on the new normal!