Little Mary-Margaret (Trisomy 18) is one week old

Mary-Margaret

Recently I mentioned in a post that I was in contact with a mom who was pregnant with a baby girl with Trisomy 18, and she had received one of the angel boxes we made and donated to UNC Hospital.

I am delighted that little Mary-Margaret is one week old today!  She was born via a scheduled c-section at 37.5 weeks gestation.  She weighed 3 lbs. 6 oz.  Miss Mary-Margaret needed the CPAP to help with breathing for a few hours after birth, but then came off that and has been breathing well on her own ever since.  She has an NG tube for feeding.

In spite of doctors continuing their typical Trisomy 18 warning -she'll die within a few days - she is doing just fine and is making plans to leave the NICU and go home very soon.

Mary Margaret

Making it to two weeks old is a milestone for Trisomy 18 babies.  Then 2 months is the next marker.  Then 6 months, etc.  (Of course we count the days, celebrate the weeks, and every month.)

Please pray with me that little Mary-Margaret lives for a long time!

You'll noticed that Mary-Margaret has her hands lightly clenched in these pictures, typical of a baby with Trisomy 18.  But I have seen pictures of Mary-Margaret where she has her hands opened normally.

I remember Lilly's hands were purplish when she was born because she clenched hers shut so hard.  They remained super tight for quite some time.  My second blogpost I wrote showed how we stuffed cottonballs in her hands to try and help her open them a little.

Lilly clenching cottonballs

Like many children with Trisomy 18, Lilly eventually got hand splints to help hold her hands open.  I called them her "boxing gloves" and she wore them at night:

Lilly modeling her "boxing gloves" the day she got them

Jumping from a Lilly flashback up to Solomon, I wrote in a post last week that his lead levels had come back elevated again.  We had follow up testing done at LabCorp where they checked for lead at a deeper level.  (Cellular level.)  Thankfully that test came back much better, showing a level of only 3.0.  Which means lead is not a concern for him now after all.  Thank you God!  :)

Solomon matching farm animal cards

I was thinking about the 3 children pictured in this post today: Mary-Margaret, Lilly, and Solomon.  All are different and all have similarities.  All created perfectly by God, for His purpose.

“(13) For You formed my inward parts;
You covered me in my mother’s womb.
(14) I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.
(15) My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
(16) Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.” - Psalm 139:13-16

Today is Mesothelioma Awareness Day

Earlier this week, Solomon's lead levels were tested again.  Unfortunately, this time, they were back up.  To 5.3 which puts him back in the "we need to find out what is going on" stage.  This level is not dangerous - it would need to be much much higher for him to suffer brain damage.  But it was high enough that we had to go back to LabCorp a few days later for a re-test, at a deeper cellular level.  Assuming those results don't come back under 3.0, that means it's time to try and find the source again.  I am praying that the county worker with the "lead gun" will finally get motivated to come out and do the investigation for us.

But why?  Why does Solomon have an elevated lead level when Hunter was tested and does not?  They're both young and live in this house.  I've been continuing Solomon's detox.  But one thing I completely slacked off on since this summer is that I have not been damp mopping the floors every other day like I was.  Did this contribute?  Lord willing we will find out more soon.

What makes some people more susceptible to some things and not others?  Why did Lilly have that 3rd copy of the 18th chromosome but most other babies in the world don't?  God knows, but we haven't figured it out yet.

Recently I was contacted by a family who's mission is to spread awareness about Mesothelioma cancer. This is an aggressive cancer caused by exposure to asbestos, that affects the membrane lining of the lungs and abdomen. The family asked if I would write a blogpost sharing their story.  I was intrigued.  I have heard of people getting cancer from asbestos, but didn't know it was called Mesothelioma cancer and didn't know anything else about it.

Cameron, Lily, Heather

When Heather Von St. James was 36, she diagnosed with pleural mesothelioma. ) She had been feeling really, really awful and had been losing 5-7 pounds a week.  Then she began to feel like a truck had parked on her chest and she couldn't breathe.  The diagnosis came only 3 months after she gave birth to a little baby girl named Lily Rose.  She was told she had about 15 months to live.  Thankfully she had good doctors and finally was able to have surgery.  One of her lungs was removed.

mother & daughter - still together

This happened 8 years ago.  Heather is incredibly fortunate to be a survivor and her daughter is so blessed to still have her mother.  With her husband Cameron, Heather seeks to share information about asbestos and mesothelioma.  Below are some things that I learned, from information they sent me.

Asbestos is a naturally occurring mineral in the earth.  So it will always be here.  However, it sounds like we need to leave it alone and not use it, as it has been classified as a human carcinogen.  About 30 million pounds of asbestos are used in building materials each year in the United States.  It surrounds us as it is in many homes, schools, and buildings.

In spite of the 30 million pounds of asbestos still being used every year, that number is actually down.  Asbestos use was at its peak from the 1930s through late 1970s.  During that time it was also commonly used in over 3000 consumer products including toasters and hairdryers.

Mesothelioma is most commonly diagnosed in men between the ages of 50-70.  However it is on the rise among women.  Those with the highest probability of having asbestos related health problems are U.S. Navy veterans who served during World War II and the Korean war.

I find it strange that it takes so long for mesothelioma to surface - it is dormant in the body for 20-50 years after exposure to asbestos.

Heather's diagnosis was rather unusual since she was a young female.  But cases like hers are on the increase, due to second hand exposure.  When Heather was a little girl, she often put on her father's work jacket when she went outside.  Her dad worked in construction and would come home from work with drywall dust just coating his jacket.  So Heather's exposure to asbestos was second hand, through her father's jacket.  (Heather's dad died earlier this year, from kidney cancer.  Was it related to his work with asbestos?  Doctors don't know.)

Every year, between 2,500 - 3,000 people are diagnosed with mesothelioma.  On average, they are given 10 months to live.  This number seems" low," compared to the huge amount of people that must be exposed to it every day.  But why?  Why the 2,500-3,000?  Why not more?  Again doctors don't know.  I asked Heather for her opinion.  She replied:  "I imagine genetics play a huge part.  Amount of exposure, type of asbestos exposed to, etc etc ... Too many factors to weigh ..."

There is currently no cure.  In fact, it is tricky to even diagnose because it mimics so many other respiratory conditions.  Symptoms include: chest pain, chronic cough, effusions of the chest and abdomen, and the presence of blood in lung fluid.

However, once the mesothelioma diagnosis is confirmed, chemotherapy, radiation, and surgery can help.  Heather's removal of her lung certainly helped her and she continues to feel great, 8 years after.  I think her obvious optimistic attitude and fighting spirit helped her too.

To learn more, here are a few links:

1) Heather's mesothelioma awareness website:  http://www.mesothelioma.com/heather/awareness/
Be sure to watch Heather's video of her story - this makes it all so real:  http://www.mesothelioma.com/heather/

2) Mesothelioma informational website, for patients and their families:  http://www.mesothelioma.com/mesothelioma/

3)  Direct link from the above site, about treatment: http://www.mesothelioma.com/treatment/

Heather says she and Lily are inseparable

I pray none of you reading this ever receive the mesothelioma diagnosis.  I'm sure many - if not most of us have been exposed to asbestos many, many times.  I am not sure but I seem to recall my dad saying he was exposed to it during his years of construction work in his youth.  I wonder about our wonderful old farmhouse we live in - it was rescued from it's dilapidated state and redone in the 1970s.  What about the stores we shop at, the offices we work at, the schools we attend, etc. etc.?

Of course we are not to live in fear.  But it is good to stay armed with information so that we can make wise decisions.  Just like with Lilly's 17 months of life.  I wish I had had more knowledge and wisdom about Trisomy 18 when she was born.  But I did the best I could and now, like Heather and her husband, our family seeks to spread awareness.

Thank you Heather and Cameron, for sharing your story with me and in turn, everyone reading this blog.  May God continue to bless you to touch many lives in your awareness work.

Solomon's lead level, book giveaway reminder, and puppies

REMINDER ABOUT MY BOOK GIVEAWAY! In honor of Trisomy 18 day (Tuesday, March 18) and for Trisomy Awareness month, I am giving away a copy of the book "Audrey Bunny" by Angie Smith. (Angie has also written "I Will Carry You: The Sacred Dance of Grief and Joy" about her daughter Audrey, who had an "incompatible with life" diagnoses and lived 2.5 hours on this earth.) This is a very sweet children's book about a stuffed bunny, named Audrey, who fears that a mark on her body - an imperfection - has made her unworthy of love. She soon learns though, that that is untrue. And that everyone is special and wonderfully made by God.
You can enter by:
1) leave a comment to this post (with your contact info) OR
2) e-mail me at: LittleFirecrackerLilly @ gmail. com (remove spaces) OR
3) message me on Facebook
I will randomly select a winner on Wed., March 19.

Good luck!  :)

Today Solomon had a re-test to check his lead levels.  Praise God they have dropped!  His blood test came back under 3 which means great improvement.  He is no longer in a range where there is really much concern.  He will be tested once more at his 2 year check-up, in September. 

The government worker with the lead detection gun never did show up.  (Bureaucracy!)  So we don't know if something environmental was causing it.   But perhaps the combination of the detox I've been doing with Solomon, the fact that he no longer puts EVERYTHING in his mouth anymore, and God's mercy, is what dropped his lead level back into the more normal range.

What else would a boy push in a stroller but a dump truck!

Here is what I have been giving Solomon to work as a lead detox:  Vitamin C, multivitamin (I use Beeyoutiful's Superkids), cod liver oil (Green Pasture fermented), calcium (from Meadow Mountain Herbs) and iron (also from Meadow Mountain Herbs).  I was also prepared to bath him in bentonite clay (see article here from Bulk Herb Store).  Also, I washed his hands frequently throughout the day, gave him several snacks, and damp mopped our wood floors a bit more than usual.  (Those were suggestions I received in my educational packet from the government workers that visited us in January.)


"Because of the Lord’s great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness." - Lamentations 3:22-23

Today my favorite puppy Houdini was the first of the litter to leave home.  I was happy for Houdini but I sure miss the furry little guy and was surprised I wanted to cry after he left with his new family.  Bye Houdini!

Houdini

We just have two puppies needing good homes.  The first is Watsonia, a girl:

Watsonia

 The other is Bongle, a boy:

Bongle

Let us know if you are interested in either of these two cuties! 

Still waiting on The Man With The Gun

I've had several inquiries from people wondering when the man with the (lead) gun is coming.  I don't know - I'm still waiting to hear back as to when our appointment will be.  I rather expect to hear something this week.  In the meantime, I'm continuing Solomon's lead detox.  Something new I've learned is that I need to give him extra snacks.  Apparently more food in the tummy can help with the detox too.

One of my Trisomy 18 mama's told me that a neighbor's son had high lead.  It turned out to be from the mini blinds next to his crib!  (There is lead in the pre-1997 blinds.)   Whenever the blind was raised or lowered the lead dust spread all around.

Solomon is still sick with a cough, even though he's running around acting normal.  He also has "goopy eyes."  (Keeps getting crusty stuff building up in his long eye lashes.)  I will probably have to take him to the doctor tomorrow as I remember whenever Lilly got the "goopy eyes" she needed some special eye drops to clear them up.

Solomon "blowing his nose" (He just blows air out his mouth into kleenex)

Earlier this week, I got a fresh bag of soap nuts.  (To read about how to use soap nuts to wash clothes cheaply and naturally, see my post here.)  Hunter loves playing with them for a bit before I put them in the laundry area.  Soap nuts are great for filling up the back of a toy dump truck with.  This time, Hunter set up a rather arty looking display:

yes that really is a washing machine Christmas ornament!

Ahhhh ... a fresh one-pound bag of soap nuts

By the way, my friend H. told me that she uses soap nuts to wash cloth diapers.  They are low sudsing and she says they work great!  I have not tried this myself.  I still have a jug of Allens Naturally that I am using for washing Solomon's diapers.  But I'll have to give the soap nuts a try soon.  (Don't forget - you can order soap nuts and get a 10% discount.  See the Olive Shoot Institute ad on the right side of this blog.)

modern cloth diapers: no pins required (photo credit: Hunter)

Early last week we had some very cold days along with rain.  We had a laugh when we looked out the window one morning and saw a bunch of the hens hanging out on the porch while Dixie snoozed in the chair.

Hmmm.  When my sister-in-law bought us that white wicker furniture, I bet she never thought it would be used by furry and feathered creatures trying to stay dry!  (I know I didn't.)

Speaking of feathered creatures, one of our hens has been acting odd lately.  Tabby thought she was just broody, but we're not so sure now.  We're afraid she's getting sick.  (That would be very disappointing as she's our last Buff and is a good layer.)  Tabby posted about the problem yesterday.  If you know about chickens, please read her post, and let us know if you have any suggestions.   

If you would, please say a prayer for Frank.  He's battling a kidney stone.  I've been dumping all sorts of remedies into him to try and dissolve the stone(s).  I've only seen him with a kidney stone once, and that was pretty scary.  (It was about the time of Lilly's first Thanksgiving with us.)  I feel blessed to never have had one.  (They are supposed to be more painful than giving birth.  I think giving birth is painful enough!)  If the remedies work, I will post about them in case they help others.

"Heal me, O LORD, and I will be healed; save me and I will be saved, for you are the one I praise."  - Jeremiah 17:14

Well I'm off to make an "angel tin" for in memory of a sweet baby boy who's angelversary is later this week.  (Or "heaven birthday" as some friends call it!)

"For it is written: 'He will command his angels concerning you to guard you carefully;'" ... - Luke 4:10

The Mystery of Solomon's High Lead Levels

"We're from the government and we're here to help."

I've seen those words in enough legal briefs and court opinions to make me very, very wary and even a little nervous if they are concerning me.

Yesterday they were.  At 11:00 in the morning, two employees from the Chatham County Health Department knocked on our door.

Who was the target of their visit?

I'm innocent I tell ya!

Last fall, at Solomon's check up with the pediatrician, his iron and lead levels were tested.  (Routine testing at that age.)  Results were that his iron was too low and his lead level a little high.  Those two things can be related.  So I began giving Solomon herbal iron drops each day.  It worked - last month during a re-test, his iron levels had risen nicely.  But unfortunately, the lead level had not dropped.  Not nicely.  Not at all.  It rose a bit more.  It was a "5".  (Anything above "3" starts to become a concern.)

Good thing I read Nancy Drew books as a child, and was used to medical mysteries with Lilly, so I took on the case.  First thing was to have Hunter tested to see if this problem was larger than Solomon.  His results came back shortly after Christmas.  No lead levels to speak of.  Very very good news.

Next I started Solomon on a detox, to see if we can get his lead levels down.  (He's to be re-tested in March.)  I did some internet research, and also consulted with Mountain Meadow Herbs.  (This company had a fascinating beginning - it was with a mother trying desperately to find treatment for her son.  She wrote a book called A Mother's Guide to Herbal Extracts:  Saving Tristan and you can get this book for free here.)  From all of that I put my detox plan into action.

Here is the lead detox I am doing, if you are interested.  Each day I give Solomon:  Herbal Calcium (calcium and magnesium compete with lead for absorption), SuperKids multivitamin (Selenium, Vitamins A, B1, C all help excrete lead), and fermented cod liver oil (fish oils counteract lead and protect blood cells.  I'm stopped giving him dairy products because even though calcium is helpful, dairy products apparently increase lead absorption.  I also read Fluoride can enhance retention, but this isn't an issue for us as we're on well water and I use the Berkey water filter.  Though I have not done it yet, I am going to bathe Solomon in bentonite clay. Finally, I am being sure he eats a lot of foods high in iron and calcium.  Oh and a lot of handwashing throughout the day.

I think I could really do without that icky fish oil ...

Back to our government officials from the county health department.  They were flagged when LabCorp repeated Solomon's tests.  The visit with them actually was very educational.  The county we live in is one of 3 counties in our state that has an aggressive lead detection program so they had a lot of information.

It takes only 1 teaspoon of lead dust to poison a child.  It must be inhaled or digested.  Obviously Solomon still puts a lot of things in his mouth and chews on his fingers, so this is easy for him to do.

We live in a beautiful old farmhouse, built in about 1907.  However, it was re-done in the later 1970s.  But is there pre-1978 lead paint still in here?  I'm not sure.  The previous owners painted too.  Nothing is peeling though, and Solomon doesn't go around chewing on the walls or window sills.  Vinyl mini blinds made before 1997 are a huge concern for many - the lead laiden dust from them blows all around when they are raised or lowered.  But that doesn't seem to be an issue here as we have shades and fabric blinds.

Lead can be in the ground, from the leaded gasoline of the past.  Guess what - one of the men who lived here way back when - was a mechanic.  Relatives of his told us he would have a line of old cars across the back of the yard that he was repairing and selling.  (Remains of one car is in our woods!)  Maybe that is it?  Solomon has been known to eat dirt on occasion.  But really not very often.

Fresh country dirt ... delicious!

Toys?  Solomon and Hunter have a box of matchbox cars that my brothers and I had when we were little.  They're probably chock full of lead.  Furniture?  Quite a bit of the furniture we have is from my mother-in-laws antique shop.  The paint is cracked on some.  But how old is that paint?

So you see we have lots of questions.  It's time to bring in ... the BIG GUN.

Literally.  Yesterday I consented to having the government officials come back soon with a man with a gun.  A lead detection gun.  It is a 35K gun that he points at objects and gets lead level readings.  He will spend 2-3 hours in our home "shooting" things and also check our soil and water.  Lord willing, he will find the answer.  (I was assured he only looks for lead and isn't looking for other problems - like things not "up to code."  I wasn't thinking about that, but apparently a lot of people have worried about that.)

Out of curiosity, I asked the officials yesterday what kind of things they had found lead in in their investigations.  Here are some things:  keys (keys are full of lead! don't let your baby chew on your keys.), antique furniture, ceramic dishes, fishing weights, painted boards that people burn in fireplaces, and a variety of toys - from dolls to backpacks.

Lord willing, we will have answers soon.  I will share them here with the hopes that they might help someone else out there dealing with this.

In the meantime, we'd be blessed if you would remember Solomon in your prayers.  That his lead levels would come down and we would find the source of the problem.  Thank you!

UPDATE:  I should have noted this.  Solomon's lead level is NOT dangerous.  It is only at the "ALERT!" stage.  Kids have a level of about 55 before they receive medication. 

Also, in case you don't know, too much lead in the body - lead poisoning - is bad because it can cause:  decreased bone and muscle growth,poor muscle coordination, damage to the nervous system, kidneys, and/or hearing, speech and language problems, developmental delay, and/or seizures and unconsciousness (in cases of extremely high lead levels).  (Source: Kids Health.)

If you have ever dealt with this issue before I'd love to hear from you with any hints!