Grace and Glory

Musings from the Threshold

Category Archives: Blessings

Katie Update – Our January KC trip

For starters – the short version.
Jonathan & I, Kate, Grace, Stephen, and Andrew all had blood drawn to send to the National Institutes of Health for their study of this type of genetic blood disorder. That is not to say that they have identified the specific disorder, just the ballpark. We do not expect to get any information from the genetic end of things for at least 4-6 weeks.

Katie had various other labs drawn, some of which are expected to be instrumental in determining treatment that could be helpful. Her basic labs were pretty steady (anemic, severely neutropenic, high lymphocyte count), but Dr. Max agreed that she has better color and seems to be feeling better than in December. How we feel isn’t completely about our lab numbers.

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And now the story, for those of you who like the long version…
We drove up to Kansas City Sunday afternoon and arrived at the Ronald McDonald Longfellow House around 5.30. It was our first time there, and we were blown away. The kindness of the people, the beautiful homey-ness of the house, it was all just amazing. I think I spent most of the first half hour on the verge of (happy) tears, just overwhelmed at the kindness of other expressed in this very practical way. Here are some views of the RMH –

On Monday morning, after eating our breakfast, packing up, cleaning our room, and checking out, we headed over to our 10.00 appointment at the Hematology/Oncology Clinic at Children’s Mercy with Dr. Maxine Hetherington. We talked on the phone with one of the researchers from the NIH study on this area of genetic blood disorders, signed consent forms (which did not amount to signing our lives away as I had half expected), and all got our blood drawn for the NIH. Katie went first, as she had other labs to be drawn, and we wanted to be able to talk about her basics with Dr. Max before leaving. She didn’t break her vial record (13), but since each of the four vials drawn for the NIH was about 3 regular vials worth, she definitely broke her volume record. All the blood draws came off without a hitch except Jonathan’s – his veins were not very cooperative, but they did eventually get enough.

We did a detailed “pedigree” with Dr. Max, including what health issues various members of the family dealt with. This gives a better picture to her and to the folks at the NIH at how all the dots might connect. Many thanks to Cousin Wendy, who was a tremendous help ahead of time for this project.

Dr. Max ran some new labs this time, some of which she expects to give information that will help us determine a treatment route to get Katie’s neutrophil count and iron levels back up to where they should be (or, at least, to a more functional level – she is missing out on an awful lot at this point because her system is so fragile). When her basic labs came back, the numbers were pretty much what they have been – severe neutropenia, anemia, lymphocyte proliferation, etc. But Dr. Max agreed that she has better color and seems to feel better than she did in December when we were there (which was much better than she had been in September). We talked about some potential treatment options, which gives us the opportunity to do some research while Dr. Max waits for labs to come back. We appreciate you praying for wisdom and guidance in the treatment realm particularly.

We were at the clinic until about 1.15, and Dr. Max was with us for almost all of those 3+ hours. She is, besides being a fantastic medical detective, a really lovely person. I don’t believe she even registers on what I call “the god-complex scale.” She explains complex concepts in easy to grasp terms, yet does not talk down to you in the least. We really appreciate her.

While we were at Children’s Mercy on Monday morning, our friends the White family were giving tribute to and laying to rest their wife/mom/grandma, Sandra. My brother Eric and I went to school with the White “kids,” and while they have all remained dear to me, Eric and Donovan have actually stayed connected over the years. I was sad to be so close on the day of Sandra’s funeral and yet not be able to attend. But I was thankful that Eric was able to fly up to be there, and extra thankful that timing worked out for us to meet him at the airport and spend about an hour with him before he went for his patdown from the TSA.

We wrapped up our KC day with a visit to a local solar-power place, and a trip to Trader Joe’s, then headed for home. I really love both my driver and our travel crew!

FB Update – Jan 12

Katie update –
Dr. Max called yesterday afternoon with a probable diagnosis. They think that Katie has ALPS (autoimmune lymphoproliferative syndrome), which is a genetic disorder.

She is hoping the NIH (National Institutes of Health) will do the genetic testing b/c they will be able to get more specific and detailed information that she will be able to.

What specific type of ALPS (or if it’s one of the disorders that is really close to it) changes what type of treatment we’re looking at.

I found this page very informative.

Our Visit to Children’s Mercy

Thank you for praying for Katie, and for us as we seek answers for her.

Our trip to Kansas City was productive and fun. Papa and Gramma Byrd came with us and took the younger kids to Crown Center and other adventuring while Jonathan, Katie, and I went to Children’s Mercy for her appointment.

We were astounded by Children’s Mercy. The entire atmosphere was different than that at any specialist’s office we have been to. It was a lovely, encouraging difference.
 
The Hematology/Oncology (HemOc) clinic is its own little world at Children’s, including having its own air filters! Dr. Hetherington (aka Dr. Max) spent about two hours sitting down with us and seeking to understand Katie’s story. It was extraordinary. We learned a great deal from her, just in talking over different possibilities. She seemed to be forming a multi-tiered list of culprits to investigate.
Katie broke her vials-drawn record on Friday at 13 vials. Some of those labs have come back, and others haven’t yet. We also went for an abdominal ultrasound, which confirmed that her spleen is enlarged (something that fits with various parts of her puzzle).

After we left Children’s, we explored Union Station, drove around KC a bit, then enjoyed the Plaza light before heading home. It was neat to build some fun memories together in the midst of our concern about Kate.

          

As of today, Dr. Max’s plan is to present Katie’s case to the HemConference next month. She is wanting to get input and ideas from other hematologists. Labs that have come in so far from Friday have still not given any easy answers. So, more patience is in order, but we are encouraged to be working with Dr. Max, and trusting in our Sovereign God’s wisdom and goodness.
Please continue to pray with and for us. Thank you!

J&L

FB Posts – Dec 19, 2017

8.20am – Brief Katie-update –

I got to talk yesterday with the nurse practitioner of the Dr. in KC who is working on Katie’s case. Every single person with whom I had contact at Children’s was so kind. The nurse practitioner called me back shortly after our conversation and said she hoped to call me today with an appointment time. So we are trusting the Lord to work out those details!
Kate’s hemoglobin has dropped from 10.9 on 11/27 to 9.4 on 12/14. It actually isn’t as low as I expected, but obviously is dropping quickly now that we are past 90 days from her iron infusion in Sept. We didn’t get a read on her neutrophils because of a kerfluffle with the specimen, but have no reason to expect they have come up, so are still be very careful about her exposure to germs.
Thank you for praying! We are resting in our Heavenly Father’s love and sovereignty, and praying fervently for wisdom and healing.

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9.03am – Praise the Lord! We have an appointment for Katie at Children’s Mercy at 10.30 Friday morning!

 

A New Morning Habit

Mornings have long been a frustration to me, in the sense that we’ve struggled to get breakfast done and our day begun.  It’s seemed like we’re very disjointed/disconnected, not very family-ish, and have such a hard time getting to the point where we’re doing anything besides spinning our wheels.

Last month, the Simple Homeschool weekend links included this gem – What’s Working :: 5 Strategies for Right Now, from Amongst Lovely Things, a blog I hadn’t previously read.  Sarah gives some great ideas in a relatively short post, but the one that jumped out at me was #3 – “Start Early. Very Early.”  When I read her description of how her family’s mornings used to be, and I thought she must haved lived at my house!

The whole insistence on being “dressed and ready for the day before starting schoolwork” is really lingering residue from out-of-home education.  But we are not trying to bring into our home what happens in a school building.  No, we are seeking to educate our children at home in the way that best fits them and our family.  And sometimes it is difficult to even spot the things we do as a result of the influence of the school system.

So Sarah describes how they have thrown out the “getting ready” and have begun a habit of just starting the day with reading aloud together.  In her words,

Trust me, getting out of bed is a much more appealing prospect when chores and math aren’t looming directly overhead. My kids wake to the promise of a cozy blanket while mama reads a story. I sip coffee while I read, and before we know it we’ve got 30 minutes of  literature (or history, science, religion, or whatever else we’re reading about that day) under our belts.

Oh, that sounds inviting, doesn’t it?!  It definitely got me thinking.

Then, around New Year’s, I read a terrific article from Thomas Jefferson education about Winter’s Educational Superfood.  More good stuff in there than I can cover in this post, but it was further motivation for me to want to switch things up with our routine!

So last week, as we got back into official school stuff, I started calling the Blessings out to the living room first thing in their morning.  Now, my morning starts long before theirs, as Jonathan leaves for work about 45 minutes before most of them wake.  I use the gap for studying of my own, or a quick nap, or trying to get some of my computer stuff out of the way before they begin their day, or even making breakfast for them!  But when I’m ready for them to begin their day, I call everyone to the living room and we begin.  So for me, starting early is less about time-early and more about first-thing early.

We are reading I John 1 this month, one of them reading it from my Kindle each morning.  By the end of the month, it should be somewhere between very familiar and memorized.  And since there are five chapters in I John, the book will fit in nicely by the end of our “official” school year.

After we read our Bible chapter, we read a chapter from a classic.  Right now we are enjoying Little Women.  Not sure what will come next, but I think all the Blessings and I are enjoying it.

While I read, they usually eat breakfast (if something’s ready), or one of the older Blessings quietly fixes something, then they eat.  It seems so much easier to move on to other studying and work after starting our day together with a cozy read.

And, a treasure for you from this morning’s read.  I found this so resonated with me that it was difficult to make it through the paragraph as I read aloud to the Blessings this morning…

“If I don’t seem to need help, it is because I have a better friend, even than father, to comfort and sustain me.  My child, the troubles and tempations of your life are beginning, and may be many; but you can overcome and outlive them all if you learn to feel the strength and tenderness of your Heavely Father as you do that of your earthly one.  The more you love and trust Him, the nearer you will feel to Him, and the less you will depend on human power and wisdom.  His love and care never tire or change, can never be taken from you, but may become the source of lifelong peace, happiness, and strength.  Believe this heartily, and go to God with all your little cares, and hopes, and sins, and sorrows, as freely and confidingly as you come to your mother.” ~~ Marmee to Jo in chapter 8 of Little Women, “Jo Meets Apollyon” ~~ Louisa May Alcott

Maybe you’d like to try it?  Maybe you have found something different that is fabulous for your family?  I’d love to hear about what morning routine works for you!

Resolved

We have been looking at a family business possibility over the past couple of months that would require a major time-investment from me.  As we pondered and prayed, I realized that to be gone from home more than fourty hours a week, doing school and business elsewhere, would require a whole new level of discipline and intentionality from me.  I started formulating practical plans for different areas of our life that would allow for maintaining a calm family atmosphere and spiritual focus, a tidy and welcoming home, an effective educational experience for our children, and warm, home-cooked meals on a consistent basis.

Last Tuesday, we got a “sorry, but we are not able to give you a business loan at this time” call.  A couple hours after the initial tears and prayers of frustration, I was blindsided by this thought (and it was a good thing I was already prone for a nap)…

What if I lived as intentionally day-by-day **without** this new business as I was planning to be in order to make it work?  What changes would we see in our family relationships, our schooling, our ability to reach out to others?

Woah.

Ouch.

And yes.

Yes to learning to be more disciplined and intentional with my time, regardless of what happens or doesn’t happen with this business possibility.  Yes to implementing plans that will allow us to use our time more efficiently and work together as a family.  Yes to truly seeking to receive and give grace in the daily moments.

We don’t know for sure that the business opportunity is a solid “no.”  We continue to pray, as do others, that if this is what the Lord has for us, that He will make the path clear.  We are talking with another bank, and we are working toward improving some of the factors that prompted the “no” from the initial bank.  We are trusting the Lord to move us forward in the direction He would have us go.

And in the meantime, I am working on implementing some of my grand ideas for intentional living.

One of my first big projects has been adapting my friend Winter’s 5 Week Menu idea.  I will share more on this later, but I am truly excited about it.  I have a 5 week menu for cool weather planned out, and am working on getting detailed grocery lists made up for each week, all the recipes gathered together and in page protectors, and other tricks to make meals streamlined and simple.

I am hoping to share some of this journey of intentionality with you, so stay tuned!

Backtracking… Andrew’s May Day Birthday

Our little darling boy turned TWO on May 1st… amazing!

We had his birthday party planned for a few days later, but I snapped some pictures of the two of us the evening of his birthday after his bath, and made this collage with one from right after his birth and one from his birthday:

Then on Friday, May 4, we had his birthday party!





Andrew is really doing so well. He had his re-evaluation with his team from the Early Education Center recently, and is at or close to “age appropriate” development in most areas except his expressive language. That in itself is misleading, because wow, can that boy communicate without words! He’s quite expressive, just not very verbal.

A brief rundown on his reported developmental levels from his yearly evaluation on May 15 (mostly for my easy reference and for his grandparents):
Gross Motor: 14-16 months (and actually, I think he would be in another range just a month or so later)
Fine Motor: 21 months
Expressive Language: 9-12 months
Receptive Language: Age appropropriate
Cognitive Skills (playing, thinking, problem solving): 18-24 months
Social Skills (interacting in environment and with people): Age appropriate
Self-Help (feeding, dressing, sleep, toilet-training): 21-24 months

Still here!

I’ve been a bit distracted from blogging lately…

We’re on our second round of chicken pox currently. Unless Andrew ends up getting them in a third round, we will have lifetime immunity for seven out of eight Blessings. It’s been a doozey, and we were gifted with a stomach bug in the midst of it, but I think we’re going to pull through. Do please pray for Katie, though. She’s just getting started on her case, and I’m thinking there was some basis to the article I read that said that kids with eczema and other skin problems are likely to have thousands of pox as opposed to hundreds. She’s not up yet today, but from the way she looked last night, my mama-heart is very concerned for her.

I started dreaming last year of making available an Advent Wreath resource that folks could download for free, and that project is almost done! I hope to have it available in the next few days. This coming Sunday is the first Sunday of Advent, so I’m a bit down to the wire. If you would like to try using an Advent Wreath as a tool for worship this year, consider going ahead and picking up the needed candles while you’re out this week. You’ll need a white candle for the center (I like to use a pillar for this), and four candles for the outer ring (I usually use tapers) – three purple or blue, and one pink or red. What a solemn and estatic joy it is to celebrate His coming!

Our dearly loved dog Juilin died last week. He ran out in the road one too many times, and he did not make it. It was an honor to have him breathe his last with his head resting on my leg. We will miss him. I enjoyed going through our family pictures and picking out some of Juilin. If you like pictures of sweet adorable dogs, you might enjoy looking at them.

Our apples are all canned. I don’t have a final count yet, but hope to post more on our appling with some numbers and pictures. We did six bushels this year and tried some new stuff. I think we all enjoyed it.

And now, I must work on finishing that Advent Wreath book!

Wonderful Merciful Savior

We’ve been busy this week with the chicken pox. Four out of eight of the Blessings have them this round, and we’re hoping there won’t be too many more rounds to finish off the business of building lifetime immunity. We’re doing lots of cuddling around here.

These two don’t have the pox, but they sure look sweet cuddling!

I’m not feeling very wordy, but I’ve found these words to this song resonating this week.

Wonderful, merciful Savior
Precious Redeemer and Friend
Who would have thought that a Lamb
Could rescue the souls of men
Oh you rescue the souls of men

Counselor, Comforter, Keeper
Spirit we long to embrace
You offer hope when our hearts have
Hopelessly lost the way
Oh, we’ve hopelessly lost the way

You are the One that we praise
You are the One we adore
You give the healing and grace
Our hearts always hunger for
Oh, our hearts always hunger for

Almighty, infinite Father
Faithfully loving Your own
Here in our weakness You find us
Falling before Your throne
Oh, we’re falling before Your throne

You are the One that we praise
You are the One we adore
You give the healing and grace
Our hearts always hunger for
Oh, our hearts always hunger for

Listen here if you’d like

Apple day

We’ve been busy today taking care of various projects around the house. It’s the first weekday the Blessings have had off school since mid-September, and they’ve been a big help.

We worked on getting the venison we were given earlier this week in the freezer at last. We were given one rear haunch and two front haunches, mostly clean. Jonathan boned and cleaned it up some more, then we roasted it. The boys and I got a good bit of it trimmed and pulled/shredded this morning, and when I realized I was wearing out with quite a bit of meat left and other projects still to do, we went ahead and got it all in the freezer… some ready to pull and some still in need of trimming. Whew.

The Blessings put the winter squash we gathered last night onto a shelf in the basement, and did some cleaning around the house in preparation for the arrival of our apples. Because today is apple pickup! I headed out at lunchtime to pick up the six bushels we’d ordered, and threw in an extra 1/4 bushel of a type we hadn’t tried before while I was there. We will get serious about putting them up next week, as we have chiropractic appointments this afternoon and a busy day tomorrow. I’m so excited about canned apples, applesauce, and applebutter, and I think we’ll try dehydrating some as well. Any favorite recipes you’d like to share??

We listened to the Statler brothers through a good bit of the day as we worked (that 30 years 3 CD collection lasts through a lot of projects!). Love the Statlers! My friends the Youngs introduced me to them when I was in high school, and I was thrilled that I got the bonus of marrying into a family that appreciated them as well.

I love to listen to the Statlers sing How Great Thou Art. I got all thrilled and throat-catchy today thinking on
When Christ shall come with shout of acclamation
and take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
and there proclaim (for eternity!!), my God, how great Thou art!

So, here’s a treat for you (you’ll have to follow the links because WP is not letting me embed them, for some reason)…
The Statlers singing How Great Thou Art in 1971 on a Johnny Cash special
And a more recent version (looks like it’s from The Statler Brothers Show)
Enjoy!