Wednesday, March 30, 2016

Vomiting, Possible Seizures, Speaking Opportunity!

As I am trying to document our journey with lead poisoning with the girls, I am so in awe of how much the Lord brings you through that you think you can't handle. He REALLY does equip those He calls to things. AND we have so much to be thankful for! We have salvation! We have a Savior that gave His life so that we might be forgiven and saved! We liv in a country where we have access to medical treatments and supplies that others in the world spend their lives trying to get access to.

 Thank you Jesus!

Our day yesterday started the night before when I didn't get any sleep due to a serious sinus infection I have. I slept from 1am-4am. When I got up, I took Tylenol, Netti Potted, and I was able to spend time with the Lord and with my husband which, little did I know, I was going to need!!

After texting a few sisters for prayer, one sister came and grabbed my younger two kids since I had many appointments planned and had zero energy to get through them with a fever, headache, and no sleep. Of course, all the kids woke up at the Butt-Crack of Dawn that morning as well.  

First we were off to my chiropractor. I had asked her to look into anything she could find on lead poisoning using her connections and resources. She didn't have any new news, but she worked on my sinus and other areas that have been hurting me since I've been under a bit of stress lately. She also told me drinking a tremendous amount of water when I am in the hospital will help loosen my back up in the long run. 

Ahavah about to get her blood draw at the Cancer and Blood. And of course, at her side, is her twin. Ahavah always is much braver when her sister is looking over her shoulder at the needle and blood along side her. 

We then went out to Minneapolis to meet with Ahavah's hematologist. I needed to order her a new medical bracelet, get some more supplies for her medicine bag, and discuss Ahavah's recent symptoms with her hematologist to see if they didn't have to do with her bleeding disorder/autoimmune disease instead of the lead poisoning. 

The girls playing their travel BINGO game. 

Ahavah has recently been:

Extremely Lethargic: Doesn't want to get out of bed in the morning, lays on the couch and doesn't want to get up because she's too tired, loses her breath and feels sick when we go for family walks ect.

Changes in Taste: Everything she used to love to eat tastes bad to her and she recently really loves eating raw onions.

Irritability/Emotional: Little things upset her and she just cries about things that are no big deal.

Slower Thought and Body Response: I recorded the girls talking the other day and you can really hear the difference between Ahavah and Alecia. Ahavah repeated herself several times and it took her a lot longer to form her thoughts to words. Doing little tasks takes her a lot longer then it used to (going to the bathroom, putting her shoes on ect) and she seems to not be able to multitask very well any more. 

Strange Staring Episodes: This happened 2-3 times yesterday and I remember this from a year or so ago when her lead was high. She would "zone out" and just stare. I would call her name several times and she wouldn't respond for about a minute. Then she would snap out of it. 

Loss of Appetite: She hasn't been waiting to eat much of anything. She's been skipping meals and only nibbling on the other meals. Each day's a bit different. Some days she'll eat a little more and other days she'll eat barley anything.

Alecia has been doing pretty well besides waking up randomly through the night vomiting. Her stomach doesn't hurt, she just wakes up, throws up, then goes back to bed. 

Ahavah's Hemotologist was greatly concerned. She was really stressing to me that I should get Ahavah looked at right away for the lead. She could just tell something wasn't right with her. 

I think the girls brought stuffed animals and were playing with them in this picture. 

After Ahavah had another staring episode and was just acting strange, I called her pediatrician and asked what He thought I should do. He had asked me if I though Ahavah was having seizures. I have no idea! She's not convulsing? He said if I was worried and she was just not acting right, then I should take her in. I received a phone call that Aleica's lead level was 39. Ahavah's a 33.

After praying about it, Alex and I decided to take them in to get looked at. At the very least we would get their levels run again and do an x-ray to see if there was any other reason Alecia would be vomiting. 

My dad would be proud that I chose to bring peanut butter and crackers into the hospital as my snack of choice. 

We dropped the younger two off at another friend's house to have a sleep over, went and got some "sneaky snacks" for the hospital, and headed in. After a LONG night of tests and discussions among doctors, we finally got discharged. The doctor in charge of our children was awesome! He explained that they never deal with kids with lead poisoning before. All the doctors were on the computer studying up on how to treat the girls, what to look for ect. Other doctors and nurses came in just to meet us and the girls. This usually happens when we go into any hospital/doctor office since our case is such a rare one. 

The doctor shared with us that he believes Ahavah's staring episodes were mini seizures probably caused by the lead poisoning, but there wasn't any tests they could do to confirm that unless I visited a neurologist, which we don't plan on doing. 

Playing ABC Mouse while waiting for the x-ray.

The doctor was in tears as he discharged us. He said he can see that the girls aren't doing well and he wishes there was something he could offer us. He said he can't imagine how frustrating it would be to have their lead levels high enough to cause tremendous damage, but too low to treat, and even having the treatments not really work anyways. 

So we go home, Alecia vomits a few times, then we all sleep. The girls and I didn't wake up until 10:30am. I have been on the phone with doctors and the Department of Health all day. 


We tested the Bentonite Clay we used from a natural food store to try to naturally chelate Ahavah back in October. The lead levels came back at 12 parts per million. The FDA recommends .1 parts per million. This goes to show that even natural remedies sometimes do more harm then good! Yikes!


I asked our "insurance company", Samaritan Ministries, if there was any chance I could share our story at the MACHE Conference coming up in April. Thousands of people attend this conference, and hundreds if not thousands of people email Samaritan Ministries for the opportunity to share their story. I received an email today that Alex and I get to speak Friday night before the Keynote Speaker at the Conference!!! (If that's not the Lord, I don't know what is!!)

I am so excited and humbled and asking the Lord to use me and give me exactly what HE wants said instead of what I want to say. 

Prayers are more then welcomed as we prepare for this great opportunity! This will be my second speaking opportunity regarding my children's illnesses and I am so thrilled to see the Lord work in people's lives for His Glory and His Kingdom.

We have several follow up appointments lined up for this weekend that will give us direction on how the next week is going to play out. We'll see what God has planned for us and I'll keep blogging away!


Unsure what lies ahead of us, Alex and I fully trust the Lord and His plan for us. Alex and I have talked about where this road could end up. 
We've established that we will NEVER blame God for anything that happens, but we WILL stay focused on our God's Goodness and the fact that HE laid down HIS LIFE so that we might be saved. 
He is so Good. :)

1 comment:

  1. I just really wish there was a big neon glowing sign pointing for the right direction to go regarding this mysterious lead poisoning with the twins. There has to be, in a world of 7 billion, someone who has seen this somewhere and can offer ideas on this that have yet to be explored.

    The staring episodes sound like drop/absence seizures. My niece/God baby has these all the time (she has brain damage from cancer treatment)

    I hope this speaking opportunity opens up some doors to some new ways to approach this and help...

    Was the genetic testing done already?