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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Saturday, November 26, 2016

Mesothelioma Awareness - Katherine Key's story

I'm sorry I haven't posted more recently.  Things are just difficult and busy at home.   Tabby has had some good days though.  Solomon, though better overall, had a stomach ache and threw up several times yesterday.  Hunter's beloved hen Kelly was killed last Sunday.  He is still sad and also is really struggling with a lot of worries about Tabby.  Tis the season to be ... ????

I've been making it a game for myself to think of things to be thankful for.  I was also pleased to make my 745th entry into my thankful journal this morning.  One day the light will shine again.  Though honestly it may be awhile.  Even in normal years, in the weeks approaching December 15th - Lilly's angelversary - are not my favorite days.

Well I suppose that was not a cheery beginning for a blog post.  However, my actual blog post IS cheerful.  It is a beautiful story of healing for a woman named Katherine.  Katherine contacted me earlier this month and wondered if I would share her story of healing from Mesothelioma.  I have blogged about this cancer caused by asbestos once before here.  I have been impressed with the initiative that survivors of this cancer take in spreading awareness.  (I have been contacted by a couple other survivors, through my blog, over the years.)  I have been thinking that those of us in the Trisomy 18 world might could learn some awareness spreading tips from these people.

Now - here is Katherine's story, in her own words:

Katherine Keys has been fighting Mesothelioma for 9 years. If you don’t know, mesothelioma is a cancer caused by asbestos exposure. When she was first diagnosed doctors told her she had less than 2 years. Katherine refused to believe her time was limited and instead decided to fight the cancer. Katherine is convinced that it was her positive attitude and determination to win that has allowed her to survive against the odds. 
At first Katherine thought she had the flu. She was prescribed medication and painkillers but the pain persisted. When the pain was too much to take, Katherine went to the ER, it was there that she discovered she had cancer. Katherine was 49 years old when she was diagnosed with Stage 1 pleural Mesothelioma. 
For treatment, Katherine had her right lung and the lining of the lung removed, a major surgical procedure called extrapleural pneumonectomy (EPP). After several months of recovery, Katherine began radiation treatments. She had treatments five times per week for several months. Although she had been scheduled for chemotherapy treatments, she was relieved to learn that she didn’t have to have them. 
Upon completing her treatments, Katherine attended her regularly scheduled follow-up appointments. At first, they were monthly, then every two months, three months, six months…and now annually. Her follow-up appointments typically consistent of blood tests, a PET scan, x-rays and other tests to confirm that she is still cancer-free. 
Today, Katherine feels blessed to be able to spend time with her family and share her story with other people living with mesothelioma. While she has been through a lot and is still challenged by physical pain and limitations after having a lung removed, Katherine sees every day as a gift. She hopes her story brings resilience and positivity to people living with mesothelioma.


Thank you again Katherine, for sharing your story! I love that you see every day as a gift. :) 

UPDATE: I asked Katherine how she was exposed to asbestos. This is her reply:

I was exposed from years of wiring work for Texas Power and Light Company. Asbestos was a commonly used material in construction up until the 1980’s because of it’s fire resistant characteristic. Some of the materials that contained asbestos include wire insulation, vinyl floor tiles, paint, ceiling tiles, wall insulation, cement, window caulk, and much more. Sometimes tearing out some of these things is necessary. This can release toxic asbestos dust into the air.

Tuesday, November 15, 2016

One down, one to go ...


Exhaust Pipe the horse!
Great news - Solomon seems to be back to normal health!  Frank treated our well water for the Coliform Bacteria (no E. Coli) last Friday.  Saturday morning Solomon had a tummy ache for only a little while.  And nothing since!  After weeks of tummy aches every single day, and about two weeks of diarrhea every morning, he seems totally fine.  Much to his great happiness he got to eat cheese again!  (I had put him on a dairy-free, gluten-free diet last month but it didn't really help.  Nor would it if it was only the bacteria he was reacting to.) 

So yay!  Maybe one medical case solved.

Odysseus is almost all grown up!
Tabby remains a mystery overall.  But we have some more puzzle pieces to consider.  Last Friday we got the results of her fecal test back and she had no parasites, etc.  It did show that her Lysozyme level was elevated, which signifies she has internal inflammation.  Yep, knew that.

Dr. H went over what we do know.  Tabby has a lot of internal inflammation.  She has leaky gut.  She is insulin resistant.  Her adrenal glands and cortisol levels are a terrible mess.  And she struggles a lot emotionally.

He talked to her about the mind and body connection.  How staying under emotional stress will eat a person up.  How damaging it is for the body to think it needs to stay in the "fight or flight" mode.  How gratitude and positive thoughts have been proven to have healing effects on the body.  He recommended two interesting sounding books about the mind-body connection: Molecules in Motion and Biology of Belief.  He feels that what is going on inside her is all related and she is in a vicious cycle.

Exhaust Pipe seems to be one of our main photo props around here!

So we are going to stop testing for awhile and see how her body responds to supplements and food to repair her gut, fix the insulin issue, and heal her adrenals and cortisol.  Counseling for emotional help.  Getting up and moving more.  Taking short walks in the sunshine, or at least sitting outside some each day.

Honestly it was kind of deflating for me to hear all this.  I wanted a solid answer and for it to be a quick fix.  When I asked Tabby how she felt about what the doctor said, she was fine with it and answered "It makes total sense."

Tabby was happy the goats still remember her
 So Saturday afternoon, Tabby went outside with the boys and I.  The sun felt wonderful and so did the walk around, visiting with the animals, and hanging out while Solomon worked a paying job.  (He was hired to pick up a bag of pine cones to be used as decorations for an event.  He took his job so seriously and examined each pine cone carefully.  He'd be a good "quality control" inspector!)

After being outside, Tabby felt so good she showered for the first time in days.  Then that evening she cleaned up her room for the first time in months.  Sunday she went to church in the morning and then back in the evening for a teen lesson.  Monday she went to school.  She was totally exhausted in all these things but doing OK!

Yep - Exhaust Pipe again
Then this morning at 4:30 she called me.  She said the excruciating "hollow stomach pain" was back.  She threw up some.  She hurt so bad she was afraid to be alone.  So I sat with her until she was finally able to go back to sleep about 5:30.  (By the way, here is an interesting article about possible causes for hollow stomach pain.  It's not the same as being hungry!) 

When she woke up again later, she was just really sore but the hollow pain was gone.  This afternoon she had "regular" stomach pain again and was briefly nauseous. 

Man oh man. 

Hunter built and installed a radio for Kelly in her chicken coop

This is my prayer for ME in all this:

"If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him." - James 1:5

Thursday, November 10, 2016

The case of the disappearing & reappearing chicken AND Pain pain go away ...

Hunter is Kelly's best friend and she follows him around
-Sunday night Hunter's beloved hen Kelly was missing.  It was dark though, when he searched for her, and she is a black chicken so we thought maybe she just couldn't been seen.  But the next morning, Hunter and I were out at sunup looking for her.

No Kelly.

We periodically looked for her throughout the day, hoping and praying she might show up.  By supper time, Hunter was struggling not to cry.  He said, "This has been the worse year!  Tabby is so sick and then my chick Carla was killed and now Kelly is gone!"  We all felt sad.  Kelly was the tamest chick ever, thanks to Hunter!  And of course we felt terrible for him.

The feed store near us has more baby chicks in stock so Frank took the boys to pick out new chicks Tuesday afternoon.  (Solomon felt he should have a chick too because our little guinea, which he named Toad, had disappeared a few days ago.)

So, new chicks were purchased and brought home.  Shortly after arriving home, there was a stunning discovery.  Our old dog Lucia started getting all curious about something and upon investigation, Kelly was found alive!

What crazy timing is that?

So Kelly is back, much to Hunter's delight, and the boys each have a new chick.

Solomon named his Americana chick "Neil Pharaoh" and Hunter named his Buff Orpington "Kayla." 

Little Miss Pharaoh fell asleep!

Kayla is about a week older than Neil Pharaoh, so she's got more feathers than fuzz
Tabby enjoys when the boys bring their chicks to her so she can hold them.  Sunday afternoon she felt well enough to stay out of the recliner for a bit and went outside to sit in the sun and pet Exhaust Pipe.  There's just something special about animals!




Tabby woke very early yesterday morning with a new kind of stomach pain.  She said her stomach felt "hollow."  I wasn't totally sure what she meant but googled it and sure enough, there were plenty of people out there who have "hollow stomach" pain.  (And yes it is very different than just being hungry!)  Tabby was in extreme pain most of the day and nauseous too.  The only time she felt better was when she was throwing up.  She hurt so bad last night she was afraid to be alone.  We would have gone to the hospital if we thought they could actually do something for her.  (The pain meds they use worked a few times but now only make her feel loopy.)  I sat with her until about midnight, when she finally fell asleep.

This morning she felt much better.  She's just back to "normal pain" now.  Sigh.

I've gotten two more possible pieces of the Tabby-medical-mystery-puzzle.  Last Friday we got the results of her adrenal stress test. Her adrenal glands are a complete wreck.  Her cortisol is out of wack too - and explains why she is so dead tired in the mornings and completely wired late at night.  (The rates are very low in the morning and very high at night.)  Her test showed she has also become insulin resistant, which can explain why she's often so hungry and can't get full.

The other puzzle piece is the first part of our well water testing has come back and it was found we have "Coliform Bacteria" in our water.  This bacteria is common in our county.  We use a Berkey water filtering system for our drinking water and ice - which filters out this bacteria - but there are plenty of other times a day when we use straight well water.  (ex. brushing teeth, washing produce, cooking, etc.) 

This bacteria can cause nausea, vomiting, diarrhea, and stomach cramps.  It often effects children 5 and under, pregnant women, and chronically ill people the most. 

The well water must be treated with chlorination.  Frank bought the stuff for it today and will treat it tomorrow.  Then we have 24 hours where we can not use our well water.  Hopefully all will be good after that!  (A friend told me that when this happened with her family's well water, they all were feeling better in less than a week after treatment.)

I am praying this helps Tabby!  Though I don't believe it's her whole problem.  And - I am praying this is the answer to Solomon's stomach problems!  He has been having diarrhea almost every morning now for a week or so.  And still having almost daily stomach aches. 

reading and snuggling help Tabby and Solomon both to feel a bit better
So what will tomorrow bring?  I am almost afraid to ask.

Wednesday, November 2, 2016

Random! Tabby health update, homeschool, stopping bedwetting with essential oils

This picture of Tabby says it all.  Still waiting to find out what exactly is wrong with her.  Even our mail carrier told me today that she is praying for Tabby and for answers!

Tabby had to repeat the stool test earlier this week.  (What "fun.")  The company changed up their testing.  But the good part is, they are now doing a far more extensive test and we still pay the original price.  Have to wait about 2 weeks for the results.

Last week Tabby took a saliva test that checks a bunch of things.  Still waiting for those results.

Yesterday I had our well water tested.  Just in case.  Will find out next week if there is any bacteria present in the water.  Then in 2 weeks, we'll get results about any "non-organic" matter.

I've got Tabby on a strict diet.  Lots of meat, veggies, and fruits.  Also some nuts and goat milk and a little goat cheese.  And I found a farm that has duck eggs and I'm getting some today from them.  I thought we should try them in cooking and baking and be sure Tabby's body agrees with them before I invest in ducks.

I reviewed several paleo cookbooks and have been cooking some from them.  But I've found that a lot of the recipes use some variation of coconut which she can't have.  And many use ginger or garlic.  She can't have those.  I've decided baking gluten free things doesn't necessarily make them healthy.  Several of the gluten free flours heavily relied on raise the blood sugar levels.  So we're using Trim Healthy Mama recipes (just tweaked when necessary) as that is low glycemic cooking/baking.

Sunday evening, Tabby suddenly got a "lull" in the pain.  (That is what we've dubbed those brief times when her pain level suddenly drops.  It's still there, but is much lower.)  When the lull comes on the first thing she does is take a shower, as on a normal pain day she just can't stand up long enough to take one.  Then after her shower she does homework.  The lull lasted all through Monday so she was able to go to school!  (Only the 3rd time in all of October.)  Tuesday morning she was getting ready for school and wham.  Pain came back so hard she hobbled to the recliner.  And has been there or her bed ever since.

This really blows my mind.  She's had the constant pain since September 7th!!  SO beyond sad.  :(

And ... Solomon's health update - I've had him on a dairy free, gluten free diet for about a week and a half now.  He has not thrown up any at all.  He is still getting some stomach aches but they are much briefer.  I plan to continue his diet for another week or so and then slowly reintroduce diary.  (He think's he's dying without getting cheese every day!)  If that goes well we'll try gluten a couple weeks later.

On happier news, Solomon has been loving homeschool/preschool.  He really wants to learn to read so we've been working on phonics.  He knows all the letters of the alphabet and so we're learning the sounds.  Each week I've been introducing 5 letter sounds.

I bought wooden letter "plates" at a yard sale and Solomon lines them up.  He matches the blue magnetic letters to the proper letters on the wooden plates.   I have a 77 cent metal baking tray for putting different foam magnet objects on.  We talk about the sounds each letter makes and then he lines up picture magnets with the right letters.  ("Lion" starts with "lllll" etc.)

He usually takes this very seriously for 2 days.  Then the third day he get silly and puts the pictures by the wrong letters on purpose.  Which really is fine, because we sound out that picture using the wrong sound.  (Ex.  "Drum" becomes "Trum.")  Then on the 4th day I get out a timer and set it for 3 minutes and he hurries to beat the timer.  We usually do the same thing on Friday and it's a breeze then.  Then we start the next week with new letters/picture magnets.


Then we reinforce letters with some free alphabet "Do-A-Dot" printables.  Solomon loves Do-A-Dot paint markers and is always asking for printables to use them with, or making up his own pictures.  (You can find free printables for all sorts of activities including fun pictures and math and reading, etc. just by doing a search.)


Solomon is my first kid that seems to naturally love math.  He walks around doing addition and subtraction and asking me to verify his problems he comes up with.  Ex.  "So does 2 + 3 = 5?"  Last spring I bought "Farmyard Math" from Timberdoodle during a sale.  My only regret is that I waited until last month to introduce it as a lot of the lessons are too easy.  I thought it was for "preschoolers" but it seems more at a "toddler" level.  But that is OK!  Solomon loves this math and I make up harder problems for him with it.

Farmyard Math comes with a tub of farm animals, farmyard mat, and a 36-week curriculum guide.  (We've blazed through the whole guide in just a few weeks and I'm making up stuff now.)   For each lesson, there is a little story, and the child follows instructions in the story.  They learn basic counting, patterns, and some easy addition and subtraction.  It really does teach the child to listen carefully to the details in the story so they can do what it is asking.  (You can see a video about this math program on the Timberdoodle webpage here.)


Hunter really enjoyed a science experiment we did last month.  But I warn you - it is not for germ phobics!  Like me.  :(  We tested for bacteria on a range of different things around the house.  We swabbed objects then rubbed the swabs in petri dishes of agar. (Kit I bought is here.)  Then we waited a few days.  YUCK!  Seeing bacteria growing is gross.  But interesting.  (The only thing I didn't like about this kit was it didn't tell you how to identify if it is good or bad bacteria.)


I found the most bacteria covered thing that we tested for was one of the kitchen sink knobs.  (Really!  Why would someone put knobs at a kitchen sink?  You have to get it all gross when your hands are filthy with say raw chicken, just to turn it on to clean your hands.  I told Hunter we must replace those knobs with something else as soon as we can afford to!  In the meantime I clean the knobs several times a day now!)


On a different note, if you've never read Up From Slavery by Booker T. Washington, I HIGHLY recommend it.  Tabby and I both read it yesterday and thought it was incredibly inspiring.  And as it is an autobiography - there is no re-writing of history!  ;)  This is one of those books that challenges the reader to better develop their character.  My boys will be reading this as soon as they are old enough.  (Fun aside - we lived in Tuskeegee when I was a toddler.  My dad taught at Tuskeegee University.  He said he used this book in his humanities class and it was always received well.)

Finally, I just wanted to share an essential oil blend to help combat bedwetting, that Donna, one of my reader's makes and has had good results with.  (Her 9 year old son stopped wetting after several days of consistent use.)  To make the "Clean & Dry" blend, Donna adds 10 drops each Cypress and Copaiba and 5 drops Frankincense to a 10ml roller bottle, and tops with a carrier oil.  Her son applied it his lower belly, lower back, and the bladder vitaflex points in his feet. 

I hope that helps someone reading this!  I actually got a lot of feedback from my posts last winter on Hunter's bedwetting.  (He has been dry since January.)  This is a problem that more kids face than I realized in the past.

Well I know this was a long post.  So if you've made it to the end - thanks for reading!  :)

Wednesday, October 19, 2016

Tabby update: Food Sensitivities test results

These photos were all taken by Tabby, at our Botanical Garden field trip last Friday.  I love how she sees everything that I do but at different angles.

Tabby felt OK enough to go to school this past Monday and Tuesday.  Yay!  She stayed home today though, feeling horrible, and I highly doubt she will go tomorrow. Boo!  She is aching and feverish and has very swollen lymph nodes.  But we're staying positive about that - those are detox symptoms.  We want all that bad junk out of her system.

Yesterday we went to her functional medical doctor for the results from the food sensitivities test that she took.  It was so interesting and encouraging in this journey to figure out what in the world is making her feel horrible most of the time.

It turns out that she has a high sensitivity to many foods she eats almost every day.  Including chicken eggs.  Now how horrible is that considering we now have 64 chickens!  But thankfully she can eat guinea hen eggs, which we have.  And - she can eat duck eggs.  Yay!  Solomon and I have been wanting to get some ducks for awhile.  Is that not a perfect excuse?

Dairy is not good for her either - but that is only COW'S milk and cow's diary products.  Yay for our goats that I milk since she can drink that.  Tabby also likes goat milk cheese.  I need to start making that (in all my spare time, right?).  But even Walmart has one that she likes.  

This sculpture is called "Spring Chicken".  Get it?
 Grains/starches are another problem for her.  Which I found interesting since she didn't test for gluten issues at the scopes she had.  And ginger.  Ginger!  I've always wondered why when I gave her ginger to soothe her stomach it never helped her.

Bursting Heart plant - we have some in our woods too

Here is the list of foods she tested a high sensitivity for:

cow's milk & cows milk products  
chicken eggs
garlic
squash
green peas and lima beans
peanuts
soybeans

almonds, cashews, sesames, walnuts
coconut
watermelon
barley, bran, gluten, malt, rye, wheat
ginger


Isn't that interesting?  I'm going to have to learn how to cook some things differently.  Like no more using coconut oil to cook food she will eat.

The test results came in a very helpful packet which includes more details on foods to exclude, special considerations, shopping lists, and a suggested food rotation list.

Dr. H said it would be best to try and basically follow the paleo diet for Tabby.  Fruits, veggies, meat.  So we'll give it a good try.

This statue is based on a scene from Cold Mountain
 There are still a couple tests we are waiting for results on.  I'm just so grateful to have something to work with.  

I have another mystery child that I need to figure out too.  Solomon.  For a couple years now, he would occasionally wake up in the morning, say his stomach hurt, and then throw up.  This increased in frequency some this summer.  And now, for the past month or so, it has suddenly become very common.  Ugh.  

In the herb garden - Solomon rubbed a plant and then sniffed his fingers to smell it
 I was lactose intolerant as a child, so I've had Solomon off dairy here and there for a few days at a time.  I didn't notice any difference.  Maybe there wasn't a problem but maybe I didn't try long enough.  I'm thinking I ought to try having him go gluten free for a while.  Dr. H said children who are sensitive to gluten can have stomach pain, nausea, and vomiting. 

For the zillionth time - I wanted to be a criminal detective when I grew up.  Not a medical detective!  

Life is full of irony.  

Here are several more of Tabby's pictures:







Sunday, October 16, 2016

Botanical Gardens - Fall field trip

Last spring, we went on a field trip to the Botanical Garden in Chapel Hill, N.C. We went back again last Friday with our field trip group.  My kids (and I!) just love it there. 

Tabby was well enough that morning to go with us - thank you God!  Then that afternoon she became extremely nauseous and has high pain every since - please heal her God.  Still though, she was SO happy to be able to get out for a bit.

[Little update - we got some of Tabby's blood tests back last week.  Everything was normal except her Vitamin D level was a bit low.  That could be contributing to her bone pain and inflammation.  Should get back more lab test results over the next 2 weeks.

The boys LOVE to play in the "twig house".  Unfortunately we learned it is going be taken down this winter.  It is apparently starting to fall apart and some people have gotten hurt.





I saw a beautiful plant that I want for my yard!  The berries on it are gorgeous.  It is appropriately named "American Beauty Berry":



Since we have goats, we thought this one was funny.  Apparently it is a plant that goats hate!  It is called "goat's rue":


We got to go inside this old log cabin.  It was originally built in the 1800s.  It was used by North Carolina playwright, Paul Green, as a place to do his writing.




Lily pads and fish!  Our tour guide showed us how if you push a lily pad under the water, it just pops right back up to the top and all the water runs off.  We needs raincoats made with that material!  This section had raised gardens were they had some sort of garden therapy for people in wheelchairs.



Hunter's favorite plant was the Venus fly traps, which were mixed in with pitcher plants.  We got to watch our guide feed some of the fly traps potato bugs.  Too cool!



Solomon's favorite plant was "Solomon's Seal."  We will plant some in his garden next spring.


Hunter loves a sundial:


For humor, Tabby copied the leaf sculpture called "Running Man".  (She can not wait to start running again herself.)


Hunter was fascinated with this spinning sculpture and was watching it for awhile to figure it out:


We have decided to go back to the Botanical Garden in this winter to see what it is like then.  :)

On a different note, Hunter told me this morning about a funny dream he had.  Right before he had a nightmare about an old lawnmower we have.  (He usually dreams about machines.)  He said he dreamed he was at Lowes looking to buy a pump.  Jesus and the apostles were there, shopping. (LOL!)  And Joseph (Jesus's earthly father) was there too - buying carpentry stuff - but he kept disappearing and reappearing. Hunter said the worst part of the dream was that of all the pumps they were selling, they would not let him buy the one he wanted!