***PICS ARE COMING GUYS!***
It's been a while since I wrote last... again... We have been trying to really enjoy time together, get settled (finally) into our new home, and growing in our walks with Jesus. So I have quite a bit I want to write about:
Ahavah: Ahavah was on this "Chelation" treatment for the lead poisoning. Her lead level went down to 10. PTL right?!? Well we had an appointment Monday (July 14th). Her platelets were still in the 95,000 area. Then we were told we were probably good on blood draws for the next month until we should check her again, unless major bleeding starts up. YES!!! A whole month without an appointment/hospital visit!! Well... then I got the call... her lead level is back up to 28. Our theory is that her bones were holding onto some of that lead and are now releasing it into her body?!? Really, we have no idea. I am brining her in sometime this next week and we will test again and talk about some ideas. I am at home doing my homeopath mama thing trying to lower her levels using cilantro oil and bentonite clay.
4th of July: For the fourth we had an awesome time with our great friends! We went to lake Elmo all day, then we went to Stillwater for fireworks. We were so fried (literately... well at least I was... the rest of my fam has a pretty good base tan) when we got home. It was awesome! We got New York style pizza, ate tons of Candy Land candy and shared Jesus with quite a few people. Here are some pics:
Hello House; Goodbye Car: So our first few days back being into our home for a long time (after hospital stays, and after being urged NOT to go home since we didn't know where the lead poisoning was coming from), we didn't have a midweek service for church. We are fellowship JuNkIeS so you KNOW we had to go somewhere! We drove all the way to Solid Rock Church in the Minneapolis area (45 minute drive). My sister was driving our car, my husband our borrowed car. She asked me to pray as we were driving because she felt like something was wrong. After church we were leaving and the entire transmission went completely out as we were pulling out of the parking lot. The car was in park and we could push it with just one finger! PTL for His protection! A brother and sister from the church drove us all the way home and hung out for a few hours that night. It was great!
We knew we had to return our borrowed car, and we had a ton of hospital visits coming up, but we were so trusting of our Lord that we just laughed about the whole thing. Well... at least we aren't homeless! :) :) Out of the blue my grandparents call and they pulled out a stock in my name years ago. The business closed and the check was being sent to me. $800. The van was scrapped and we banked another $300. Two people we knew were selling their van for $500, and other car for $500. That left us $100 for tabs and title changes. And that's how my God provides. Not to mention this van is so much nicer then our last van!
Water Park: Yesterday we went to the water park with the DGP (Discovering God's Path - our children's summer program) kids from church. It was SOOO fun!! Here are some pics:
So the girls were talking all about what they wanted to be when they grew up and here is how the conversation went:
Ahavah: So... I changed my mind, mom.
Mom: About what 'Hav?
Ahavah: What I want to be!
Mom: Oh! When you grow up? Well, what do you want to be?
Ahavah: Well, I decided I don't want to be a pink clown anymore. Just a princess... and a ballerina.
Alecia: Me too! I want to be a princess too!
Mom: What about you Hayven? What do you want to be?
Hayven: I want to be ... hmmm... a snowman! :)
Also, I taught Elias how to throw his own diapers away when I am done changing him... well it started out good. Then he threw every diaper he saw away. Clean or dirty. Then I started missing plates and silverware. Then I started checking the trash and would find shoes, toys, cups and the like all in the trash. :) :)
Elias and Hayven have a really classic brother-sister relationship. No one can make Elias laugh like Hayven, and no one can make Hayven cry like Elias. The other day, I was cleaning my windows during nap time and brought Elias into my room so he wouldn't wake the other kids up. He saw the squeegee, grabbed it, and headed right for his room. I followed him, of course... all good mom's are suspicious. His little body reached over Hayven's bed guard and he started smacking her with the squeegee. Whenever he picks up a spoon, stick, or empty bottle, he heads right for Hayven. :)
Things I Have Learned: Things don't overwhelm me. I am so surprised at this, and I know it's all the Lord's work in my life. As much as I don't like how fast life seems to be going, the appointments, the responsibilities, the overtime at Alex's work, and ministry seem to flow so easily and naturally. Alex and I have been spending one hour a day devoted to prayer. Once a week we try to pray for that hour together. We also joined a prayer group with a few other couples and meet on a weekly basis. Man! I love it!
My prayer hour every day is like sip of water from a fresh, flowing brook and a soft, cool breeze in a desert land. I have found myself conversing with the Lord almost constantly throughout the day. Praising Him for this, asking Him for wisdom on that, hearing Him tell me to talk to this person. Oh, it's so intimate It's so... no words cannot explain. I wouldn't trade ANYTHING for it! The first word on my lips in the morning is... "Lord..." The last thought in my mind is, "Oh Jesus! I love you!"
With all this said, the trails persist, most of which you will never know about, nor will I post on this blog. We are promised them by Jesus Christ himself. It's part of being His disciple. There is sacrifice. There is pain. There is suffering. And although I don't consider myself to have suffered at all compared to most, I know I wouldn't trade anything for my Jesus.
Monday, June 23, 2014
We ended up getting discahrged Saturday late afternoon.
Her lead levels went from:
74 - Monday
47 - Thursday
56 - Saturday
Her lead level increased while we were in the hospital!
No one understands why. This is all under investigation by Poison Control and the Department of Health.
There are questions about Ahavah's x-rays and what we were really seeing and why more appeared on the second x-ray. There are theroies about the links between her bleeding disorder and the lead poisoning. The other strange thing is that she was on high dosage of iron supplements which should have prevented her from absorbing so much lead!
We have the Department of Health meeting us at our home tomorrow. Praise the Lord my husband will be able to get off early to be there with me so we can ask questions, walk through all the testing of the paint, water, toys, cookingwear, food ect ect ect. I told Alex to bag up his work clothes so we can test those too.
God has blessed us so so so much! We have a place to stay, people brining us meals and taking Alex and I out for dinner. I am beyond blessed!
I really wanted to share somthing. As much as things seem inconvient, uncomfortable, and frighteneing, it's very sobering to keep this in mind: we have brothers and sisters who are being hunted, tortured, and killed for their faith in Christ all around the world. Yes, the emeny ramps up his attack on us here in the US by frustrating our lives, our health, our relationships, and our wallets, but I'm not gonna lie... I'm not being refused medical service because I beleive in Jesus. I'm not worried about military bardging into my home becuase we were signing praises and praying for our daughter while in the hospital.
We are blessed guys. And seemingly "big" events that we face in our lives, in the view of eternity are so small! Jesus is all there is worth holding onto. There is nothing else. Not even our own children.
Is Jesus really all that matters to you?
When you're faced with troubling times, do you doubt Him?
Are you shaken?
How weak is your faith!
If you know your God, then fear and worry should have no place in your life.
Nothing should move you.
Friday, June 20, 2014
After our routine blood draw at the Cancer and Blood place in Children's of Minneapolis Monday, I was given false results twice of my children's lead levels. I was told, "Oh they stayed the same! Ahavah is 13. Alecia is 9." I passed the word to my Pediatrician and we went about our week.
Then Wednesday morning I got a phone call. "You need to go to the ER IMMEDIATELY! We got the results back from their blood draw Monday and Ahavah is at 74 and Alecia is at 10. Ahavah has severe lead poisoning and you need to leave right now! We also need to get the Department of Health involved and Poison Control."
So we packed up and here we are back at Children's Hospital. After some research and information from the nurses and hospital staff, I discovered my daughter was 6 points away from seizures, being in a coma and having a high risk of brain damage! Oh God's grace is so good!
We were up all night having a medicated "fruit punch party" (which I would NEVER, EVER allow my kids to have at home), and watched movies until the wee hours of the night (which, again, I rarely let my kids watch tv). We then had a pooping party!
The plan today is to continue to flush out Ahavah's bowls and organs, do a second x-ray (the first came back with something abnormal in her bowls), and draw more blood to check the lead levels again.
But here's the BIG kicker... we aren't allowed in our house for the next 2 weeks. Poison Control and the Department of Health is going to have to inspect our home and I guess there are government programs that help people who have lead in their homes to get rid of it (IF the poisoning is coming from the home).
So again, we are just taking things one thing at a time. We are all in great spirits though (as you can see from the pictures). We have so much joy and peace and we are not really moved by anything going on.
Monday, June 2, 2014
Seven Things I Think New Home Owners Should Know:
(1) It takes a WHOLE lot longer to clean a house. I went from a 700-900 sq ft apartment to a 1,700 sq ft house. I feel like I go upstairs, finally get it decent looking, only to climb downstairs... and... I ... can't... believe... the ... mess!!!!! I FIANLY can say I am unpacked and have cleaned the whole house at least one time! Yay! 14,000,000 more times to go! :)
(2) The projects never end. "Oh! We could put shelves here! And a bench here! And what about that portable island I saw at Ikea for the kitchen?!? Paint! Let's change the bedroom to purple! My mom got rose bushes and she has extra for us! What about a rose bush garden?!? Can we sheet rock the basement? The endless cobwebs freak me out. What about put a second bathroom where this mudroom is?"
(3) Your Neighbors and Permanent. This is strange to me. The people next to me will probably be there my entire time in this home... strange...
(5) It's Your Responsibility. When your fridge leaks water, YOU have to figure out why. When your sink clogs, YOU have to un-screw it, dig the hamburger fat clump out of the "U" shape of the pipes, and screw it back together. Hopefully you remember a large bucket so you don't spill water everywhere... Have branches scraping the shingles off your roof? GREAT! Go buy a ladder, saw, and Tarzan away!
(6) Men think the outside of the home and the basement are most important. My husband has spent almost every hour of his free time "working on the yard." He came to me today and said he's obsessed with yard work! I laughed at him and told him its a great hobby. Men since the beginning of time have built shelters and provided for their families that way. I think it's really cool... and hot ;)
(7) Your Home is such a BEAUTIFUL place that YOU get to fill with LOVE, JOY, PEACE, and HOPE. Fill your home with praises to God. Write the Word on your doorposts so they may be ingrained on the doorposts of the hearts of all who enter your home.
Love. Laugh. Sing. Repeat.
Friday, May 30, 2014
Sorry it's taken so long...
This pretty much describes how we are feeling right about now:We just moved... well... still in the process of moving. We haven't even fully unpacked and cleaned yet. And we spent a week in the hospital. This week was filled with doctor's appointments and blood specialist appointments.
So Ahavah got the IVIG treatment to help raise her platelets. They went from 341,000 as of yesterday!! Wooohooo!!!
However, her iron levels are still low (Hem. at 8.8 still), and her lead levels came back high (13). We had to get Alecia and Hayven's lead levels tested yesterday and they are med/high (6, 4), but higher then we would like them to be.
Some are pretty certain this is ITP now, while other's are still thinking the chronic nose bleeds are something more. As much as I want to believe Ahavah simply has acute ITP (which is now best case scenario), I feel like there is something we are missing. I can't tell if this is Mommy's instinct, or just me being over-worried.
So we have been catching up on sleep as you can see:
Ahavah had a nose bleed this morning even though she is on a few different treatments to prevent the nose bleeds. They want to put her back on this Amicar she was taking in the hospital, but it caused her to pee blood clots so I am still praying about whether to put her on it or not.
Ahavah is so restricted in the activities she can do. She can't run, jump, climb ect. She can walk and sit. It's been REALLY hard on her since she just wants to play with her friends and go to class on Sundays and Thursday. Thankfully she got to go to her CKC commencement:
We are praying for God's will in all of this as always. I am also praying for God's wisdom on how to handle all this. At church I feel like a nervous wreck following Ahavah around, making sure she doesn't run or jump or climb anything!! Thursday it was so crowded and so... overwhelming, I wanted to cry!! Still figuring out what life looks like for us at the moment.
|Alex at our appointment to get Alecia and Hayven's blood drawn|
So the plan for now is to monitor her for the next 2-4 weeks and see what her body does as the IVIG treatment begins to wane. Then we will decide if she gets another dose of the $2000 treatment, or if we really think this is ITP we are dealing with.
Thanks for all the prayers, comments, and emails. I am reading the articles you are sending!
Sunday, May 25, 2014
The twins have had nose bleeds almost their whole life. Since they were 6 months old or so. It became such a regular thing that I just left tissues for them and expected blood on their sheets every morning.
About a month ago Ahavah's nose wouldn't stop. 3 1/2 hours long, fighting consciousness, stomach hurting. We took her to the ER.
This Friday she began another nose bleed. 3 1/2 hours long. I followed all the procedures and no luck stopping it. We took her into her pediatrician and they drew a blood count. Her platelets were 7,000 and they needed to be 150,000 - 450,000. They sent us to Children's Hospital.
The Hematologist (Blood Specialist) assured us that she thought this was out of the ordinary and we were waiting to get admitted. After fighting for a room for our daughter (a different Hematologist tried to send us home after 7 hours of waiting for a room on Memorial Weekend, when they were short staffed), we got a few hours of sleep. Little did we know what we would be up against.
Man, i'll tell you! When a mama's baby is in jeopardy, I am amazed at what Mommy instincts do! I was close to being Godzilla mama Saturday morning! My baby's nose was pouring blood, she was vomiting blood, she was fighting consciousness, crying for me to help her! No one had answers! No one knew what to do!
Once I talked face to face with the Blood Specialist things got MUCH better! We talked about all that could be going on, what she believed is going on, and what the game plan was to diagnose.
To make so many tedious details into a shorter overview...
Her platelets are scary low. She cannot form clots. She is spontaneously bleeding out of her nose, and other places including her mouth and tear ducts. This morning her Red Blood Cells dropped to a scary level that places her in "transfusion" category. She is VERY high risk for a bleed into her brain. She is at risk for Kidney failure from the medicine we are putting her on to treat ITP (which is one of the least severe guesses we have at what is going on with her). She is vomiting a lot this evening. We packed her nose to try to control the bleeding, but the blood is pushing the plugs out slowly. She may need to surgically put packs in her nose, but she doesn't clot.
God is so Good!
Yes, He is!
I KNOW my God. My God IS GOOD.
Despite what happens, I Know that I know my God is good.
I am filled with such peace. It's so strange.
Yes, I have cried. I have not slept or eaten in days, really.
I am living on adrenalin for sure.
But I am so confident that whatever the outcome, My God is so Good.
I have been able to share Christ with so many people.
I have been able to pray with other mom's of hurting children.
I have clung to the words my God has given me.
I will end this post with this:
As I was holding my daughter, nearly unconscious from a random spike in fever and blood pressure, she was struggling to breathe, her body hot against my chest and arms, I heard the Lord ask me, "Cassie, do you trust Me?"
"Yes, Lord! I trust You!"
Again, "Cassie, do you trust Me?"
"Yes, Lord! You know I trust You!"
And a third time, "Do you trust Me?"
"I trust You, Lord."
"If I took your daughter, would you still trust Me?"
"Yes. I trust You with everything. I love You."
In that moment I realized something. Even if my Ahavah doesn't pull through this, I KNOW my God. My God is good! My daughter will wake up in her Savior's arms. She will stop bleeding. She will be washed in His blood.
She will be healed.
Thursday, May 15, 2014
It's Been A Minute. (That's ebonics for it's been a while).
We moved into our new home!
It's Big. It's Wonderful. It's a HUGE Blessing.
We have a kitchen table... that's so nice!
We have 4 bedrooms... so, so nice!
We have 1,700 sq feet... so, so, so nice!!
We have clothes lines... again... so nice!
We have our own washer/dryer... word's can't express!
The neighborhood is quite eccentric. Every racial spectrum. Every people-type. Suburban. Hood. Country. Eastern. You Name It. All. Needing. Jesus.!!
We aren't a quiet family. We have embraced that. And use it for God's Glory... or at least we try to.
So we have met almost ALL our neighbors within the first day we lived here. :) Sharing the love that Jesus has put in our hearts. Simply sharing that love. Praying for people. Telling them how blessed we are. Praying for a way to fix that neighbor's roof before winter. Praying for a way to speak truth and freedom into the neighbors enslaved with drugs and alcohol.
So we are sitting on our NEW (well..new to us...) dining room table (Can you tell I am so excited about this table?!?), eating Gluten-Free Coffee Cake that my dear friend took home and baked last night and left on my front porch this morning (yes, I was afraid when my gas stove turned on... I've never had one before) reflecting on the last two weeks of moving and worshipping and praising our Great God.
Every day since we've been here someone has been over. My dad, step-mom, and brother were her for a few days, we had other random people over everyday, and my sister just moved in. A house filled with people, ministry, and the love of Christ is everything I've ever wanted! Cooking BIG meals to feed whomever comes through that night. Baking cakes, cupcakes, breads, and muffins to feed whomever comes through that morning and afternoon. Now that we're in Saint Paul, we have been driving down the streets picking up a brother that has been back-sliding and deep into meth and other drugs and pulling him out of his friends homes and just having him tag along with us. Praying he misses the fellowship with Jesus he once had and comes back to him.
That's what I'm MOST excited about!!!!
Filling this home, this neighborhood, this city with the simple love and prayers of a little home maker and her four children.
So I climb onto my roof with my Bible and my guitar.
I pray over each house.
I sing God's praises over the houses.
Over the Families.
Over the City.
God! Come fill this place with Your Spirit! Bring revival here! Please Lord! We NEED You!!
***Pictures to Come***
Once I find my card reader... :)
It's in a box... somewhere... hopefully...