Tuesday, March 8, 2016

When a Blood Draw Changes Your Life: The Next Step Part II

Who knew a few weeks ago, catching the influenza and running routine blood work (well, routine for our family) would cause such a domino effect in life changing events?! If you haven't read my previous posts over the last month, and my posts over the last few years about lead poisoning and bleeding disorders, then you can catch up with those fancy little categorized tabs on the side of this blog page. :)

Sunday, we met with our new pediatrician to discuss in detail test results we did regarding elevated b-12 levels and elevated ferritin levels in the girls. We talked through a game plan as far as dealing with the continual lead poisoning and how we are going to approach the coming few months/year. We also ran blood work to check the girl's liver and kidney function, which came back normal. PRAISE THE LORD!!!

Our Home fellowship got the kids doctor appointment packs with games, toys, and activities. Here they are at the appointment Sunday playing with the gifts.

Monday, the girls were each evaluated by a behavioralist/developmentalist. This was such an encouraging appointment! I was told that the girls not only show no apparent or obvious signs of lead poisoning affecting them neurologically, but they actually are mature beyond their years socially and academically! I shared with the doctor how we live according to the Bible, how we homeschool through all the doctor's appointments and how we choose to do healthy practices such as limit electronics with our children. She agreed all these things seem to be protecting the kids from regressing mentally. She said she's dealt with kids who have autism or ADHD due to lead poisoning (levels MUCH lower then my kids), and she simply cannot believe how poisoned my kids have been for so long! PRIASE THE LORD!!!

Our appointment Monday, which was about 3 hours longs. 

Today, we had a gent come over and walk through our home to see what we need to do to prepare for what is called a SWAB program here in Saint Paul. We were reminded how important it is to keep our home dust-free and clutter-free . There are decluttering projects I have to get done this week, preferably by Monday to prepare for this SWAB team to go through the home. I can't even keep up on laundry, dishes, and cooking right now, let alone have a dust-free, clutter-free home! 

So between all these appointments I have attained a whole lot of homework as well as a list of places I need to schedule appointments and contact. The game plan is to:

(1) Visit a Pediatric Neuropsychologist: Each child will spend a full day at the hospital getting a detailed evaluation of development. This will give us an accurate baseline to refer back to in the following years as far as how the girls are developing. This specific neuropsychologist happens to also be a hematologist and works with the group Ahavah sees for her bleeding disorder.

(2) Visit a Geneticist: We got denied by the Geneticist here in Saint Paul, but our case is being sent to the hospital in Maryland called Bethesda. I'm not sure if we will be going out there to get seen, or if the doctors out there will be contacting a Geneticist here for us to see, but I was assured with such a rare case that my twins have, we WILL get much attention from Bethesda.

(3) Visit or Contact a Toxicologist: This step is a bit confusing to me still, but we are investigating the actual procedure of how a lab technician would process a lead blood test. Is there variations with the machine that runs the test? Is there any other substance that would cause a child's lead level to look high, but actually isn't? Is there anything that would make a child to be more susceptible to have elevated lead levels?

(4) Get Long Bone X-Rays: This could give us information on how much lead is stored in the kid's bones, possibly how long they have been exposed to lead, and possibly how much lead is being leached from the kids bones and put back into their blood stream.

(5) Fill out Mounds of Paper Work: I'm working on a mound of paper work for the developmentalist that simply documents what the girls are able to do physically and mentally for another baseline of brain function to fall back on. I am working on all these release forms for all the kid's doctors and specialists to share information between each other. Our dentist (see below) requires quite a bit of paper work and health evaluation prior to going in next week. 

(6) Deep Declutter the House in Preparation for SWAB: As if having extremely strenuous and frequent appointments isn't enough, I somehow have to completely declutter and organize my entire house in less then a week... 

(7) Visit a Dentist: Getting the girls in to a Holistic Biological Dentist is going to be a great resource both now and in the years to come as we start seeing long-term effects of severe lead poisoning. We can work with this type of dentist on over all health as it relates to their teeth, which are bones and lead is stored in or can be seen in the teeth. This type of dentist also doesn't use heavy metals or toxic chemicals which is great for my poisoned kid's little bodies. 


However, I have such peace that we are exactly where we are supposed to be. 

This amazing group of doctors and specialists we have behind us now are actually fighting for our children. They aren't content with just letting my kids be chronically between a 20-40 in their lead levels. They are all racking their brains and resources to do something to save them. I am praising the Lord and giving Him all the glory. 

Current events have caused us to re-evaluate how we are homeschooling and how we function as a family. We have changed our whole approach and outlook on homeschooling. It needs to be easily packed up and able to be done on the go. Book work right now needs to require less then a few hours from me a day. Resources such as audio books, iPad apps, reading books and workbooks that can be thrown in our backpacks and done in waiting rooms are life savers. Alex and I also have scheduled a get-away trip over a weekend to go to the MACHE Conference in Duluth this year. This will dub as our "baby-moon" as well as a time of prayer and re-evelation of what the Lord has for us as far as home education our children.

Trying to be home is now a very cherished things. Any time we can do something as a family and not talk about lab results, upcoming appointments, or things we need to get done, WE NEED TO! We're also trying not to let all this chaos take the girls away from seeing their friends and participating in church events, birthday parties ect.

Did I mention I was having a baby?!? Lol.
I have completely forgotten this month that I was pregnant!
And I'm nearing my final trimester!
I also have midwife appointments that will begin to demand one day every two weeks as well as Chiropractic appointments that will require the same amount of time. All the stress of life right now has caused my Braxton Hicks Contractions to increase a whole lot these last two weeks.

Also, did I mention my husband's in full-time work AND full-time school?!?

This is just a glimpse of what's ahead of us. 
In our Marriage.
 In our children. 
In our ministries. 

When you face a trial, it shows where you really are and who you really are.

If you've read my blog for years now, you've heard me share my relationship with Jesus and how I apply His Word to my life. You've seen me stand on my convictions. Now you get to see me in the midst of a trial and you get to see the emotions and my weaknesses, but you get to see the STRENGTH the LORD ALONE GIVES!

The love I have for my Jesus!
The passion I have for His Word!
The UNWAVERING conviction I have that GOD IS GOOD!

Oh dear reader, 
I PRAY with all that is in me that you are spurred on in your walk with Jesus. 
That you dive into His Word and fall so madly in love with Him. 
That you allow Him to be your rock and foundation. 
That you never waver in who God is. 
No matter what you face. 
No matter where this world is heading. 
No matter what's going on in your life. 
And that you shine on, bright, bold, and unashamed of the gospel of Jesus Christ.

No comments:

Post a Comment