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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

Monday, September 26, 2016

Tabby update - Lyme disease test today

Tabby received a "sunshine basket" from my mom's church

Today my stepdad took Tabby and I to his acupuncturist/chirpractor.  This doctor is also a  "functional medical doctor."  At this point, I want Tabby to see a doctor that considers her whole body in trying to diagnose what might be wrong with her.

Our specific focus today though was for Tabby to get blood drawn to test for Lyme's disease.  We talked to the doctor for awhile first as he gathered information about her.  He was very interested that her health problems began shortly after her bout with pneumonia this past January.

We have a lot of ticks where we live.  Some years we see more than others.  This is one reason we like have free ranging chickens and guinea fowl - they love to eat ticks!

In my research as to what may be causing Tabby's pain and problems, I found that Lyme's disease is something that regular medical doctors don't talk a lot about.  It is something that is not uncommon though so I don't understand why people with mystery issues aren't routinely tested for it.

When I google "teens and Lymes disease" many lists pop up.  A Lyme pediatric specialist posted a symptom list online and I reviewed it with Tabby.

These are the symptoms she has had very frequently this past summer, and many are now almost constant:

- headaches
- nausea
- abdominal pain
- impaired concentration
- poor short-term memory
- inability to sustain attention
- being overwhelmed by schoolwork
- confusion
- outbursts and mood swings
- fevers/chills
- joint pain
- dizziness

The symptoms she has sometimes:

- severe fatigue unrelieved by rest
- difficulty thinking and expressing thoughts
- noise and light sensitivity

If you want to see this doctor's entire list click here: Note that fewer than 10% of children have the "bulls-eye" rash.

We should have Tabby's test results next Tuesday.

The doctor said that if she tests negative for Lyme's, then he would like to test her for "leaky gut" as there are many of the same symptoms.

Tabby is still in pain most of the time.  BUT there is improvement!  Last week I ordered a number of Plexus products that several other families have used to successfully treat Lyme's in themselves and/or their family members.  (Plexus is also great for treating quite a number of other health issues.)  My order came Friday afternoon and I started giving Tabby the stuff right away.

Saturday morning, when she woke up - the pain in her stomach and chest was GONE!  For the first time in weeks.  She was sore - but no sharp pain!  She did complain about really bad joint pain though.  The stomach/chest pain were still gone when she woke up Sunday morning. She was so happy as she got ready for church but then when she was eating breakfast, the terrible pain came back.  The depression and pain were crushing and she had to go back to bed.  STILL ... that was improvement!

Today her stomach and chest pain again went away for several hours!  The joint pain remained.  But again, it was improvement.

She's already exhibiting a number of detox signs since starting Plexus - joint pain could be from that.  (Or Lymes of course, if she has that.)

We're new to the Plexus world, though I have read about it in the past few years.  So I'm going to observe a bit more and then I will share about the products Tabby is taking and how things are going.

Thank you again, so much, for your prayers as we try to unravel this mystery so Tabby can get back to a normal life again.

Wednesday, September 21, 2016

Tabby's GI test results

Just a quick update on my should-we-rename-it-"Pray for Tabby"-blog.

I got the results for Tabby's Hida gallbladder scan last Friday. Everything looked good. No problems.

Special pillow case provided at the hospital testing center - isn't that a special touch?
Just a quick update on my should-we-rename-it-"Pray for Tabby"-blog.

I got the results for Tabby's Hida gallbladder scan last Friday.  Everything looked good. No problems.

This morning I took Tabby to the hospital for an endoscopy and colonoscopy.  (Yikes.  I know.  Well I don't - but I've heard.)  The procedure itself went smoothly.  NO problems were found.  Well other than a tiny polyp which will be checked, but the doctor doubts it will be any sort of problem.  So that means no celiacs, gluten issues, crohn's disease, etc etc.  Somehow we weren't surprised.  But we were disappointed.  We wanted this search for what's wrong to be over so we can take some action.

Tabby's wake up after the scopes did not go smoothly.  (She had anaesthesia during the procedure.)  Tabby was very disoriented and started sobbing.  Then she was gasping with pain.  She said her stomach pain was incredibly sharp.  They said "gas pain" was normal.  But her's was much worse.  Her doctor said her nerves are "hyper sensitive."  So they gave her some pain medication.  Of course it didn't really work  Nothing seems to.  She's been in almost constant pain now for TWO weeks!

Her GI doctor wants to see her again soon.  But I also am going to be pursuing a different path.  I'm considering whether Tabby might have Lyme's disease.  Her symptoms fit with the symptoms of many teens with the disease.  From what I've learned from my research, it is tricky to diagnose and tests are not very accurate, unless you get one within 30 days of being bit.

I am too tired to share more about that, but I will post about the treatment I am putting together for her very soon.

Thank you everyone for your prayers and support.  We really need them!

Solomon snuggles help ease the pain

Sunday, September 18, 2016

Keeping up with our feathered friends

I'm needing a light hearted post, to amuse myself, and just leave present reality for a few minutes.  Read along if you want to see silly chicken stuff!

Hunter's chick Kelly follows him everywhere he goes outside.  (She's still inside in her bin most of the day though, as she's still growing.)  When he sat on the swing, she hoped onto the swing, and then onto her favorite place - his shoulder:

When Hunter and Solomon have played in the sandbox lately, Kelly seems to be enjoying flying up onto Solomon's head.  Solomon doesn't appreciate that.  So he decided to wear his fireman hat to prevent Kelly's landing.  So far so good ....

Last Sunday morning, we got to watch several Guinea keets hatch in our incubator.  I was so sick of "egg sitting" - turning the eggs several times a day for weeks.  It was worth it though, to watch the hatchings, and have all 5 keets survive.  The boys and I cracked up at this keet - it struggled and struggled then it's head and neck popped out and it fell back, exhausted, and we just stared at each other:

"what are you lookin' at?!"
Solomon gave the five keets names from Thomas the Train:  Toad, Oliver, Sir Handel, Rusty, and Molly:

I'm the one that cares for our chickens in the mornings and afternoons.  So I spend a lot of time looking at them while doing my chicken chores.  Of the dozen chicks that hatched this spring, there are six roosters.  I've now given them all names.  Let me introduce them to you:

This is Rocky 1 (half-Barred Rock).  Many of his smaller feathers are outlined in green:

Rocky 1
And this is Rocky 2!  It took me a few days to realize there were TWO roosters that looked almost alike.  I finally noticed this rooster's smaller feathers are outlined in a gold-ish color:

Rocky 2
Next we have Harold the Handsome-Cut-Rooster.  (Have you ever seen the frozen french fries for sale at Trader Joe's?  We got them a couple times and we think the "handsome cut" part is too funny.)

Harold the Handsome-Cut Rooster
Then we have Fabio.  Do you remember the old ad (shampoo?) with that blonde guy that said "Don't hate me because I'm beautiful ..."  Well our Fabio has long yellow neck feathers and he struts like he thinks he's God's gift to the hens:

Here we have Swiss Mister.  He looks just like a hen that I named "Swiss Miss" because of her coloring.  The white with brown reminds me of hot chocolate and marshmallows for some reason!

Swiss Mister
Finally we have Regal.  The name just fits him as he walks calmly around in his excellent rooster posture:


Here's just a funny picture - I think he's telling me I need to get up, and go put my boys to bed:

"Enough wasting time woman!  Get back to work!"

Thursday, September 15, 2016

Solomon's 4th Birthday

My youngest boy is growing up! And he is thrilled. Solomon is always asking me if he has gotten taller and how long until birthdays.  He turned 4 today and is already planning his birthday cakes for the next several years.

Solomon is my "rainbow baby" and was born 9 months to the day that Lilly died.  By God's blessing, Solomon helped me not to dread the 15th of every month.  He brought me more healing than anything on earth.  I wish that all mamas that have lost a child could have a rainbow baby.

As soon as Solomon woke up today he smiled and said "Birthday!"  And then he excitedly asked for his present.  I had a box of several Thomas the train cars that I bought cheap off Ebay.  He was thrilled with them.  He cracked Hunter and I up because as he got them out, he separated them by size.

Solomon's other highlight of today was helping make his birthday cake.  He wanted to make a "giant sprinkle cupcake." 

Frosting the cake and adding sprinkles was so much fun!

But candles and eating cake were the best:

What else does Solomon like to do besides playing with trains and baking and eating cake?  He loves reading books, playing outside, helping with chores, and giving me lots of hugs. 

Yesterday he had the best time cleaning our mirrors and then the front door glass:

Thank you Lord, for binding up the brokenhearted and bringing beauty from ashes.  (Isaiah 61)

Tuesday, September 13, 2016

Train ride and hospital ride

Sunday afternoon we went to the New Hope Valley Railway to ride an old steam engine.  (You can buy tickets to ride either a steam engine or diesel engine when they have scheduled rides.  Check out their website for the information and to buy tickets online.  You can also buy them in person.)  My boys LOVE steam engines.  Solomon plays with Thomas the Train tracks and trains pretty much every day.  Hunter likes studying steam engines and how they work.  And sometimes he'll play trains with Solomon too. 

We first picked up our tickets:

Then off to the train!  The train ride lasted about an hour.  We all liked it.  I think I love the sound of the train best.  I liked watching Hunter's face just studying how everything was working.

Here is the steam engine:

The open air train cars were pleasant - as long as we were moving!  (It was a HOT day.)

Halfway through the ride, the train stopped and the engine was moved from the front to the back.  The engine had to go up a little farther and switch tracks, then came back on the track next to us before finally hooking back up.  (I think my boys called it "coupling" and "buffering")

That Sunday, they were hosting a "Working on the Railway Day" and had little tents set up with different information about train related things.

Hunter asked the man at the telegraph station a number of questions:

We got to go into several train cars.  The mail car was interesting.  There was even a little video showing how they would just throw out bags of mail at designated spots.

The baggage car had a coffin in it!  (complete with fake skeleton):

The boys had fun on the handcar:

There was a large toy train set up and running when we first arrived.  Unfortunately it was closed down when we got back to that area.  We promised the boys we would go back soon to watch it.  (You can do that for free.)

I've driven under the train's bridge a number of times, but had no idea what a neat place it
was.  The boys got free tickets for next year, so hopefully we'll get to ride again.

Tabby has mostly been in pain, except for a few hours here and there, since last Wednesday evening.  Early Sunday afternoon she said the pain was gone and she was just really sore.  And that she really wanted to go on the train ride.  Unfortunately, she ended up feeling really rotten again while we were there.  Then that night, I was putting the boys to bed and she burst into the room gasping and saying she couldn't breathe well.  She felt her throat was mostly closed up.  I tried a few remedies really quick but then when they had no effect, we went to the emergency room.

They took her back as soon as I told them what was going on and the nurse looked into her mouth.  She said Tabby's air passage was "Wide open.  Completely normal."  We were taken back to a room in the ER and they did an EKG and hooked her up to the monitors.  Everything looked good even though she seemed to still be struggling to breathe.  Just to be sure, she then got a chest and throat x-ray.  All good.

So she was finally given a medicine to calm her anxiety and one for pain.  We left about 2:30 a.m. and she was breathing fine and felt a little better.  She pointed out that she had now been to the hospital more times than Lilly.  I told her that she was a bigger mystery than Lilly.  At least with Lilly, we knew what was wrong with her every time!  I feel so helpless and frustrated not knowing how to best help Tabby.  Can't wait for her upcoming testing.  Though I'm nervous thinking about "What if the tests don't reveal anything?  Then what?"  Tabby is so afraid of being an invalid.

Now here it is Tuesday night and ... the chest and stomach pain is still there.  Now how discouraging is that?!  All she wants is to go to school and run cross country.  I told her obviously that is too much to ask right now.  :(  Though of course we keep praying.

One of my ways of coping is guzzling an awesome Trim Health Mama drink called the "Singing Canary."  The recipe is in their cookbook or you can get it on their website for free.  Read their impressive description of this drink:

"Are you exhausted? Living under chronic stress? If you’ve been diagnosed with adrenal fatigue, you’ll want to make this drink frequently. But all of us can benefit. If you’ve had too many late nights or simply need a battery recharge, then drink the Singing Canary. It detoxes the body, beautifies the skin (super-high vitamin C content), has cancer-fighting power (thanks to curcumin), and has weight-loss benefits to boot! It has been especially formulated for tired, inflamed bodies, with each ingredient carefully chosen to be a powerful adrenal healer. There is no caffeine. It contains only deeply nourishing, soothing, hydrating, healing, tenderly awakening ingredients that create a delicious adrenal reviver! And despite the fact that it contains 1 full teaspoon of adrenal rebuilding, inflammation-fighting turmeric powder, it’s remarkably delicious—think Sunny D meets Orange Creamsicle®."

Sounds pretty good, huh?  I tried to get Tabby to drink it but she wouldn't.  Oh well, more for me!  ;)

Today I came across a scripture my friend C. from Haven Enterprises wrote out for me once.  It was a good reminder for me:

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." - Galatians 6:9

Friday, September 9, 2016

Tabby's GI doctor visit

Tabby finally had her appointment this morning, with Dr. K, the Pediatric Gastroenterology specialist.  We were both encouraged as he seemed very knowledgeable and spent a lot of time asking questions and listening.  (As a funny aside, he had a bit of an Indian accent, which Tabby said made him a little hard for her to understand at some points.  Hunter said he understood him just fine because he has watched a lot of videos on YouTube where a man with a heavy Indian accent explains all about H-bridges for motors and has learned the accent.)  

Tabby has had her stomach pain since Wednesday evening so we were actually sort of glad she still had it today.  Dr. K. was able to feel her abdominal area and note exactly where she hurt so much.
turkey & hummus sandwich with cheese wedge ... just what the Tabby ordered (she is still usually hungry, even when her stomach hurts!)
Dr. K. said her nerves in her GI were certainly "hyperactive."  I asked if it could have been caused by the blast of antibiotics she had in January when she was hospitalized for pneumonia.  (Since she has had health issues ever since then.)  He said "yes."  (Of course we will probably never know for sure.)

As we expected, Dr. K. wants to do some further testing.  He wants to thoroughly check Tabby's gall bladder, as she can not tolerate greasy foods and because her pain almost always starts on the right side of her stomach and she gets nauseous.  She's already had an ultrasound of her gall bladder so he's going up to a more detailed test - a HIDA.  (The hospital is to call us to schedule that.)

She'll also have the "super fun" endoscopy and colonoscopy tests in just under 2 weeks, also at the hospital.  She'll be tested for celiacs, gluten issues, etc.

While we search for answers, the doctor prescribed some medications to help Tabby in the meantime.  These are things she can take as certain symptoms come on.  Different ones for nausea, acid control, and a spasm medication.  We also got a bunch of sample packets of IBgard which is for people with IBS and is a capsule containing peppermint oil, fiber, and protein.  (I gave her one of those on the way home and she feels like it is working well already.)  Finally, he suggested we pick up some Antivert for when she has dizzy spells.

Say "cheese!" Literally!  That's a cheese wedge she's holding up.  :)
Dr. K. said he does not think it sounds like she has any food allergies, so we will not pursue that right now.  But because her stomach nerves are "hyperactive" we're going to try and keep her diet really clean.  (I told her to stay away from the snack machine at school and when her friends offer her junky treats to "just say no!")

So, the saga of Tabby's mystery pain will be continued ....

Thursday, September 8, 2016

Happy 8th birthday Hunter!

Hunter turned 8 years old today.  He woke up so excited this morning about his project plans for the day and was downstairs before 7:00.  He started off with a simple wiring project (parallel circuit with LED lights) to solder.  He has been obsessing about soldering lately.

We had Hunter's birthday cake last night, because we thought that we would be at Tabby's cross country meet this evening.  But ... she got her stomach sickness last night and has been home sick all day.  (She has her GI doctor's appointment tomorrow.)

For months Hunter has talked about a special birthday cake he wanted this year.  He has an electrical wiring book that had an article and photo about an automatic floor warming system.  Hunter drew a picture of his cake design and told me what to get for each part.  Solomon and I baked his cake, and then he decorated it himself once it cooled.

The cake represents a cement board under layer.  The white frosting is the paste over cement.  And the blue lines are the heating element:

The chocolate bars were added to represent thin set mortar:

The blue icing in the corner is the electrical box and sensor:

Happy birthday Hunter!

Can you tell Solomon enjoyed the cake?  He burst out, "Oh!  This cake is too good for me!"

Solomon has already planned out his birthday cake.  It's coming!  One week from today my "rainbow baby" will be 4 years old.  He likes when I am praying with him and I say "Thank you God for my rainbow boy."  This morning he surprised me with a big hug and said, "I love you!  You're my best rainbow girl!"  That was so perfect - I really needed that.  :)

For his birthday present, Hunter got to order some things from his favorite catalog:  All Electronics.  He wanted a new solder iron (he wore out the one he was given earlier this year), a motor, some LED lights, mini speakers, and something else I don't remember.

He's already told me he needs a cordless screwdriver for Christmas  ....