IMG_2517

The doctors are so happy with how Little is doing that we were told to “go home” on Thursday, September 20. Because of the number of appointments we still have at the hospital each week we are planning to split our time between the apartment and our home. If another family needs the apartment we will make the move home for good. I am asking the Lord to hold off and please let us stay in the apartment until my class ends on October 19.

We did spend this weekend at home and Little slept in her own bed for the first time since mid-June. We all went to church together too. Such a joy.img_2519.jpg

Advertisements
Posted in family | 4 Comments

Cath Results

I am so thankful for the prayers of our friends and family and the calm that comes from my Father. So many people responded to the last update and I really could tell that we were, once again, being brought before the throne. My mom sent me an email which contained the sweetest prayer from the mother of a boy with whom I graduated high school.  I am going to include it here so I remember:

“Oh Lord, as we enter this gift of a day, I pray for my friend Kathy as she prays with Me and So many Others for Her Dear Becky and Precious Granddaughter and Grandson Today…Esp. do we pray for all the tests being done on Miracle Girl………….May they each be done and good results found…..Bless dear Becky each moment of the wait and may they soon have a Huge Tricycle to take home making for some Fun Exercising!!!! May Brother’s Birthday be This Huge Blessing to His Heart and Spirit…May He be amazed at all he is learning this Year and look back on it as a Major turning point for Good in His Life as He is the Cheerleader!!!! May Daddy continue to have a beautiful Smile on his handsome face as He looks to YOu for guidance for Every Moment for He and His Precious Family….

And Bless Grandparents wherever they are esp. Kathy today as She prays , prays and prays more…..May She feel Your Love and Protection as never before as she meditates and looks out at her amazing back yard… We love You Lord and thank You for the opportunity to knock at your door and be welcomed in with a big hug and a loving forgiving heart!!!

In Jesus’ Holy Name,
Amen”

Monday went well.  The hospital scheduler called mid-morning and asked us to come an hour early and I felt like that was a kindness from the Lord. Little had just started complaining about wanting lunch and it was wonderful to have a distraction.

Bubba was great all afternoon. We had one moment of tension but one hiccup in six hours is pretty remarkable. He read an entire book, did schoolwork, and played video games all before joining Little in recovery to watch the first half of SING! I was proud to be his mom and thankful for the Lord’s grace.

IMG_2498

Storybook of pictures to prep Little for each step of the procedure. Megan from Child Life is such a blessing.

Little was so brave. She’s a pro when it comes to an echocardiogram and EKG! Then when it came time to take her back for her test, she waved goodbye and asked me to keep and eye on her Kindle for her. She woke up effortlessly and endured the two hours of laying flat before popping up, marching out, and asking about dinner.

I did fine. I remained calm until our Transplant Coordinator, Christine, came to the waiting room to see me and discuss the possible results and their effect on our lives. That’s when I got teary; it only lasted a minute. The prayers of the multitudes were palpable.

The heart cath covers three different areas – the blood pressures, cellular rejection, and a fancy name I can’t recall that addresses the measuring of any created antibodies. The only result I was given immediately was the report that the pressures in Little’s heart measured perfectly! Every number the doctor shared was exactly what she was hoping for! Rejoice!

This evening the phone rang and Christine reported the cellular rejection findings: Little is level 1R on the Acute Cellular Rejection Grading Scheme. A great explanation of what that means can be found on The Society for Cardiovascular Pathology website. Here’s the basic scale:Screen Shot 2018-09-18 at 10.54.45 PM

“Interstitial” refers to spaces/gaps and “perivascular infiltrate” roughly means inflamed cells. “1 focus of myocyte damage” means that there is one area where the heart muscle’s cells have died. Christine explained that many of the children who have received transplants from Children’s Hospital have 1R level rejection and they sit at that level for years and years with no change. There is no required treatment for this level of rejection. The cardiology team will go in tomorrow and double-check the findings to make sure they all are in agreement and, if they are, we go on with the present treatment plan.

I still haven’t heard any results concerning the third area assessed during the cath. Christine has promised to call and fill me in when she knows if Little’s body has begun building up any antibodies against Dwayne. We haven’t talked much about this portion of the testing and so I don’t know what potential action steps would even be. The Lord will make it all known in His time … “He who called us is faithful and He will do it.”

So, I go to bed tonight comforted that the Body of Christ is alive and well and surrounding us with prayers. I am thankful for this Church family and the taste of Heaven they provide. But I go toward bed with a heavy heart as well. The truth that our journey is far from over weighs on my weary heart. The Truth of His victory does not remove the reality of present grief and brokenness. So I go to bed and I will sing the words of Isaiah 40:11 as I hopefully drift off to sleep.

(When I was in college a friend involved in the same college ministry as me put out an album. On it was a song written from Isaiah 40:11 and the parts I can remember run through my head to this day. I can’t find my cassette, and who are we kidding, what would I play it on if I did find it! I have written him to ask him for the lyrics in their entirety and when I get them I will come and add them here. I bet Andy still has that cassette…)

Posted in family | 4 Comments

Psychology, Netflix, and My Life

Anyone who wants a glimpse into the inner workings of my life can start their research with what I don’t watch/stream:
You will not find me watching This Is Us = Everyone cries.
I did not/will not watch Parenthood = Autism stress
Probably going to stay away from Steel Magnolias = Death post-transplant
Haven’t been able to bring myself to watch The Good Doctor = Autism stress
And my sobs tend to ruin any gathering that involves watching How To Train A Dragon 2 = Daddy Dies

On the other hand, one can also tell a lot about what is going on in my life by what I AM watching /streaming:
Sweet Home Alabama = Homesick
The Good Place = Need to Laugh
Carpool Karaoke clips = Need to Laugh
Star Trek = Jeremy picked.
Hope Floats = Need to Cry.
Speechless = Need to feel understood.
And when life just feels discombobulated and I don’t know just what I need, I find myself turning to Netflix and watching Hart of Dixie. (NOT a recommendation.)

Last night I put the kids to bed and turned on my laptop.  As soon as I opened Netflix and realized I was looking for the aforementioned familiar series, I stopped and tried to think of what I was feeling and what was needed to deal with my needs in a healthy way. (There is a counselor somewhere squealing and feeling confident that their work with me was a success!!)

Things have been cruising along here in our temporary home away from home. Little is feeling better all the time. She has gained four pounds and hasn’t gotten sick in almost three weeks. She is building up strength and endurance at physical therapy and that leads to her sleeping WELL at night! Her appetite is back as is her affection for all things cheese and loathing for showers. This is where the muddling of my mind comes in …

img_2447-e1537138264115.jpgIt is almost as if nothing happened, but something did. She seems just like she was last year, but she has a huge scar down her chest and another 22-25 on her neck, arms, and legs telling a different story. She looks GREAT but my phone alarm shakes a pill bottle at me twice a day and she MUST have her medicine. We aren’t in the hospital but we aren’t living at home. She seems to have so much energy, but we’ve had to cancel three visits from friends (and Daddy) because they are sick and her immune system is being suppressed. After being on high-alert for months and uber-focused on a defined negative trajectory, it is weird to have such a blatant barrage of daily dichotomies. I don’t think I am responding as well I could. I have eaten an unhealthy number of ice cream sandwiches.

Tonight I’ve cleaned the chocolate off my fingers and I’m going to put off escaping to Bluebell, AL to take inventory of what is happening and what I need to lay at the Lord’s feet.

img_7020.jpg
We have been going to the hospital on three days of the week for two clinic visits and two physical therapy appointments. On clinic days we have to get there before 8:00 AM so that Little can have her blood drawn for testing. While the technicians check the levels of her medication to make sure they are therapeutic, we head upstairs for an EKG and an Echocardiogram to check “Dwayne’s” function and look for any signs of rejection. To date everything reads well. At physical therapy appointments Little does weight training for strengthening and rides a huge tricycle all over the hospital to build endurance. The improvement is measurable and our therapist Emily, a native from Atlanta, has submitted a letter requesting a local charity consider Little for a tricycle to take home!! **Praying for acceptance of “Dwayne” and a tricycle for Little!! What a joy it would be for her to join us on rides!

While function may appear strong, the doctor’s also need to see “Dwayne” up close and check for any rejection at a cellular level. Little has her first post-transplant heart catheterization on Monday at 3:30 PM. For this procedure Little will be put to sleep and a catheter will be inserted in her groin and “threaded” up to the right side of her heart, where it will be used to test the pressure there AND take five small biopsies for testing. It should take an hour and a half and she’ll go home a few hours later. I haven’t been too anxious about it, but find myself beginning to wonder how I will respond in the moment. My emotions keep popping up and surprising me and I am not sure if watching her be  wheeled away will freak me out or not. And Bubba’s going to be there too, bless his heart. The unknowns of it all make me pause – there are definitely easier stories to stream online! **Praying for a calm spirit during the cath, endurance for Little since she can’t eat all day, and patience for Bubba as he has to sit and wait throughout the procedure.

Homeschooling for Little will vamp up this week too. I have been including her throughout the day with what Bubba and I are doing, but the school has now gotten me the information I need for better direction. The administration’s expectations are low which gives me freedom to do what we can with the knowledge that they will make up the difference when she returns to the classroom in November. Their low expectations also bump up against my competitive and sinful nature and make me want to wow them with my homeschooling prowess. I must chill. This isn’t about me. **Praying I will challenge Little without exhausting her and that school will be fun but purposeful.

img_4191.jpgHaving Bubba here has been wonderful and stressful. It seems that all the things the Lord spent months teaching me while I was powerless and on my knees are being tested in the person of my 13-year-old son. He’s like a pop quiz! School is going well and I actually LOVE that part of our day. Having him with me 24/7 is allowing me to get to know different sides of him; reminding me of so much I like about him and pushing me to my knees as I trust the Lord to complete the work He has begun. I never saw my life including homeschool and I don’t know how the Lord plans to use this year in the long term, but I am trusting that our conversations will be life-giving and the curriculum we’re using will shape his worldview. I am ** praying he will look back on this year with fondness and not just remember how much he missed his friends. I am happy he has peers to miss and thrilled to see his need for social interaction. He has a birthday party coming up and I am ** praying that everyone will be able to attend.

Then there’s me! Being willing to slow down at this time has been a challenge; it is hard to acknowledge that reading by the pool with Little is what I am called to for now and that it’s good. It is temporary and so I am trying to maximize every minute. I no longer have a job when I return to FoCo and I am working on the prep for what seems to be God’s plan for provision.  Colorado offers an accelerated course for a parent to become a Certified Nurses Assistant (CNA) and will pay that parent to care for their child with special needs. The explanation is long and pretty amazing and I am planning to go to class in October! There are 8 days of class, two clinical days, and a state exam! I will be able to work taking care of Little, but will also be certified and able to work outside our home if that need arises.  **Praying for all of the details to come together and for my brain to work on command.

Thinking back over what I have written, it strikes me that I turn from the story of my life to get lost in the stories of others. Truth is, when I take the time to reflect on my own story, I see His glory and grace revealed and the depth and beauty of His unfailing love; I laugh, I cry, I feel understood.  OF COURSE Steven Curtis Chapman summed it up perfectly in a song!!! (Click Link to hear or you can just read through.)

Glorious Unfolding
Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing love
And the story has only begun

We were made to run though fields of forever
Singing songs to our Savior and King
So let us remember this life we’re living
Is just the beginning of the beginning.

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding.

 

 

Posted in family | 12 Comments

Living the Dream

img_2295.jpg
I am a planner. ANYONE who knows me is well aware that buying my new planner each year brings me amounts of joy that most would find disproportionate to the task. I love ordering my world and dreaming of how pretty life could play out and I love doing it in multi-color ink and sometimes stickers!

With each passing year I hold the plans I make more loosely. The Truth that “a man’s heart plans his way, but the Lord directs his steps” is more real to this control freak than ever before and 2018 has forced me to balance my planner on open hands. I mean, the above picture shows the first five days of August and only 6/13 items written happened even remotely the way I planned them. Three of those six happened on time but played out completely different from the way I thought they would  because of Little being readmitted to the hospital and having to plan around that new development.  All of that to say, what I used to hold tightly I find I now hold with a much looser grip.

When the conversation about Little being added to the transplant list began to get serious in May, my mind immediately started to spin. I was overcome by my powerlessness – my inability to create even a semblance of control by mocking up a plan for our lives. I couldn’t work up a schedule to more speedily get a new heart. I couldn’t be involved in the plans of our healthy children because they were miles away. The ONLY thing I kept coming back to with confidence was that we had been praying for months about potentially homeschooling Bubba and I was confident the Lord was saying “yes”.

Screen Shot 2018-08-26 at 11.59.41 AMYep – you read that right.  The ONLY thing I felt certain about involved asking this child who used to require a printed schedule to emotionally manage children’s worship, to live flexibly and roll with it while we lived away from home. It involved asking me, the mom who has always been pro-homeschooling for everyone else, to jump right in and become a teacher at home. And so I started dreaming about what this would look like since it was the only thing I knew “for sure.” I didn’t know where we would be living in the fall but I could choose the curriculum we would use. I couldn’t predict Little’s future but every time I dreamed of the fall the picture included me, Bubba and her living together and enjoying our time.

Bubba moved in with us last weekend. The kids and I spent Saturday at the pool I never planned for while Jeremy made the apartment I never fathomed tech-ready. One of Bubba’s classes is online and so we now have wi-fi and there’s a printer for assignments and a Roku (’cause Jeremy loves me). On Monday we sat down at the kitchen table, prayed together, and then dove into science. There was conversation and Truth and we were done in a timely fashion.

How has the rest of the week gone? Super! I overheard Bubba telling his uncle that he is excited about what he is going to learn and the fact that it is from a Biblical perspective. My heart swelled from the other room.

Little is doing so very well.  She has gone from taking 31 pills a day to only taking 15; that’s 11 medications down to 5. Two more of those will drop off in October and she will be on three of them the rest of her life. With the decrease of medication there has been an increase of appetite and we are hoping we are done with sick tummies and the downward trend of her weight. We keep our plans to a minimum since she still gets tired pretty quickly. If we have a busy morning we can expect to spend a quiet afternoon together. She was given the “all clear” to swim this week and so she has enjoyed walking through the water in the pool.

After feeling out of control for MONTHS I can say I am only slightly better at keeping my hands from clutching at the things I hold dear: my plans, my hopes, my fears. And yet, as I look back over the past months I see time and again that His plan was more painful than I could believe I would survive, but more amazing and joy-filled than I could have fathomed. And here I sit in this amazing apartment and I look around me: daughter with a healthy heart on the couch, son being flexible beside me, me being a teacher, all of us enjoying our time together . . . and I realize we are living the dream!

Posted in family | 5 Comments

P.U.

bad-smell-clipart-black-and-white-21

Tuesday we got in the car and it stunk. so. bad. There was quite a bit of debate about what it could be and the kids decided it was Little’s boots which were laying in the floorboard.

Wednesday we got in the car and it was rank. We rolled the windows down and discussed the fact that the smell was a little bit like wet carpet or mowed grass that was rotting.

Today we got in the car and I needed to find the pump to put air in my tire. It wasn’t where I left it so I thought it might be in the trunk.  As I went to look I commented on the fact that the horrible smell in the van now resembled the smell of asparagus. When I opened the trunk I found the air pump AND a grocery bag from our grocery run on Monday. In that bag? A melted and now rotting bag of broccoli.

I just went out to the van and it smells great.

Posted in family | 4 Comments

Heart Transplant and Etsy

IMG_2267We have this sign on the door of our apartment and I like the idea of it but don’t like how big it is. My southern roots come out strong in a few places: the urge to ask anyone who walks into my house if they would like something to drink, the constant use of “Bless her heart”, and hangin’ wreaths, pumpkins, or my monogram on my front door. This sign would seriously wreath-block me and I am not willing to sacrifice my seasonal spheres of joy. All of that to say, I went onto Etsy today to look and see what types of signage have been compiled by crafters worldwide. I decided to search broadly under the term “heart transplant” and I was shocked at some of the items that popped up.  They range from ridiculous to inappropriate with a “not so bad” thrown in. I have chosen several to include here so that I can know I didn’t imagine them.

  1. Solid Chocolate heart lollipops
  2. A CUSTOMIZABLE anatomical heart brooch
  3. A Pillow
  4. Soap!
  5. A Santa Heart pin
  6. A heart bath bomb
  7. Zipper broken-heart earrings
  8. “Saved by Jesus and an organ donor” T-shirt – NO!!
  9. Cookie Cutter
  10. “All I got was this stupid t-shirt” T-shirt – NO!!!!

 

There were a couple of things I actually thought were clever:

  1. Cupcake toppers
  2. “Black Diamond pave’ Rose Gold Heartbeat Ring”
  3. Cute idea with the penny
  4. Small pin
  5. Laser-cut paper art.  Beautiful. If I still scrapbooked with paper I would put this on a page.

 

Then there was this:

Blown Glass heart in a jar $400

That’s a blown-glass “heart in a jar”.  I think it’s a a little amazing.  It’s also $400.

To answer the question that I am sure is on all of your minds, NO, I did not find a sign for our home. There were magnets … but our door is wood.  Looks like I have been given the opportunity to create  and create I shall. And it will be tasteful, respectful, and tied with a big Southerner approved bow!

Posted in family | 4 Comments

Spurgeon Quote

hope‘Don’t you know that day follows night, that flood comes after ebb, that spring and summer succeed winter. Hope then! Hope always! For God does not fail you. Don’t you know that your God loves you in all this? Mountains when in darkness are as real as in the day, and God’s love to you is as true to you now as it was in your brightest moments….Come sing in the midst of tribulation. Rejoice even when passing through the furnace. Make the wilderness blossom like a rose! Cause the desert to ring with exalting joys.’

— Charles Spurgeon

Posted in family | 2 Comments