So it's been an... emotional week or two to say the least.
We have platelet levels back up (YAY!!!!), however, we received very troubling news that the twin's lead levels are on the rise. Alecia came out at a 38, and Ahavah a 28. Ahavah just finished a chelation therapy for her lead back in November.
Again anything above a 5 is proven to hinder brain development as well as organs in the body. With our highest of a 74, and our average around a 25-30, for TWO YEARS, we're facing grim circumstances...
I now look back on the past month and realize those bursts of wrath and agression I've been dealing with in Alecia are due to her high lead levels. I remember asking her why she keeps getting so angry and I remember her saying, "I don't know! I can't help it! I just get so frustrated and angry!"
It's just the scariest thing when lead attacks your children's minds. You see them slow in certain areas, struggling over verbalizing things sometimes, and extreme changes in temperament and it's almost too much to handle.
SO after crying for 4 days and being on the phone with the wonderful, WONDERFUL people at the Department of Health we had some ideas of what we could do next. I met with the girls NEW pediatrician (which I am SO in love with, I could write a whole blog post about them) and we ran some blood work and made some referrals.
We've already:
(1) Passed Environmental Inspections, Several Times: Our home, paint, dust, dirt, water, cookware, toys... everything. Past living place. Current church location. You name it, we tested it.
(2) Changed the way we eat and live: Got rid of all chemical cookware. Eat almost completely organic (pesticides can be tricky business). Take vitamins and supplements. Got rid of pretty much all chemical exposure.
We don't know where the lead is coming form and why only the twins have such tremendous levels. So here are the next few steps we are taking:
(3) Genetic Testing: There's been studies done that certain genes have been linked to your body not being able to clear heavy metals from your system. I don't know if these are genes that you're born with or if they mutated, but we're getting the twins tested for this.
(4) Behavioral/Developmental Specialty Care: The road I NEVER wanted to embark down. Mostly out of fear. I don't want to continually assess them and see the effects this demon has had on their once whole and healthy brains. I am so scared to take this step. I was encouraged to years ago, but I just couldn't get myself to do it. I am so thankful we homeschool since I can continue to challenge them academically whenever and wherever we are, I am also the most informed on what they struggle in and what to watch for.
(5) Assessing their Overall Health: We're running blood work and such to find any gaps in their vitamin levels or nutrition. Their health as a whole. The twin's dental health over the last year has taken a real toll for the worse and they have NO reason for this at all! You read my blog! You see how healthy these kids are. So we'll be seeing this holistic dentist we were recommended too over the next few months to evaluate why their dental health has been affected and what we can do to help it without exposing them to more heavy metals and chemicals.
I'm not gonna lie.
I've been an emotional wreck.
Want the Truth?
I get lonely thinking no one really knows what I'm going through.
Then I remember that doesn't matter.
I forget how severe and "stressful" this all is until it shows it's ugly head again.
But there's one thing that still remains with me.
My anchor.
My hope.
My God.
The Holy Spirit who speaks directly to my heart.
I KNOW my GOD and HE IS GOOD.
He knows what's going on and I don't need to.
I WANT to. :)
But we pray about the next step and He's so faithful to guide us.
We'll follow Him into whatever He has for us.
From this life into the next.
So weary parent.
It's okay to cry.
It's okay to feel.
God knows, you don't need to pretend.
But you need to fall back on Him and let Him make the choices, not those emotions.
Seek Him.
Wait on Him.
Trust Him.
We walk by faith NOT by sight.
Since Hayven and Elias don't have elevated lead (correct?) and the twins are identical... I'm leaning towards it being some genetic congenital situation with the girls and I am hoping and praying that it can be found out. Even though it is baffling your healthcare team, there has to be someone somewhere in this world of 7 billion that has seen this and can offer insight/answers.
ReplyDeleteThis has to be so hard and scary and confusing and frustrating. Myself, iving here in Michigan with all the talk of lead in Flint, i'm sure lately there are TONS of more articles and studies published about lead right now... but seeing as how the lead in Flint has a source, and the lead with the girls doesn't... I wonder if you can find any ideas or leads in that info.
I think the genetic testing is the way to go, and then maybe if there's no answers there reaching out to your media and/or social media (instagram/twitter) and seeing if maybe someone somewhere in the world might have answers! I think your story, if it comes to this necessity, could really gain wings (adorable twin girls facing a really baffling medical condition that has ties to something else thats been big media lately (lead) would pique the interest of the public and maybe lead to a doctor somewhere in the world who has studied this/seen this - just an idea)
No matter what, I continue to think about and pray for your family. I REALLY hope you all can get some answers for your babies.
Thank you for the encouragement!
DeleteYes we've been keeping up with what's going on in your neck of the woods. I've been reading several studies on what's going on there (I don't like to listen to the medias interpretation of what's going but I like reading actual studies).
I am interested in the genetic findings. I've been spilling over medical study after medical study over the last few days just so I know exactly what we're looking for in preparation for the genetic tests and neurological tests.
Again thanks for the prayers and encouragement! My dad suggested keeping a log and pictures of all that we walk through in case we do get to share their story with other organizations like we got to with Ahavahs blood and cancer place.
Thank you very much for sharing this post. I am looking for a professional family dentist Hermosa Beach for dental care of our family. We shifted to Torrance couple of weeks ago and not that much aware with good local dentists.
ReplyDelete