I laid in bed so heartbroken all night long, just praying this was all a bad dream.... ironically enough, about half way through the night... my sweet 7 year old, Kambree, came tip-toeing in... she herself had had a bad dream......"Mommy, I just need some snuggles." And snuggles she got.... the rest of the night.
A few months back, at the end of January, we were celebrating that our son Kenton had escaped a Cystic Fibrosis scare....and in that blog, I touched on the decisions we would have to face as parents in regards to whether or not we would need to have the girls tested at some point, to see if they were carriers.
Throughout his scare, I couldn't help but have fears that my older daughter, had several of the "symptoms" boxes checked. I just knew that we had to focus on one child at a time. The past couple of months, we took some time to enjoy the dark cloud finally being lifted....but every time I heard her mucousy cough..... my mother's intuition kept saying, we really needed to have her tested. She has had this cough for as long as I can remember..... no cough syrup, allergy medicine, honey concoction has touched it.
We had her annual well child check last Wednesday.... and after some discussion with her doctor, we all agreed, the repercussions of not finding out, could potentially be worse than finding out.... and so the sweat chloride test was scheduled for yesterday.
If you recall from my son's test, you want the numbers from this test to be low.... a score above 40, puts you in the borderline/intermediate category---requiring some more investigation (Kenton's' score was 52)... a score above 60 is considered a positive result for Cystic Fibrosis.
About 6:00 last night, I got the call.....
"Kambree's numbers were very high."
"How high?"
"115."
And just like that, our world has once again been turned upside down. Based off of that test, our sweet baby girl has Cystic Fibrosis.
Today, I am waiting for a different phone call.... what's next? Where do we go? When do we go?
And I'm fighting off the demons in my head.... about what this all could mean...
Most days, I feel like I am just barely doing all that's needed to keep Kenton on the right path with all the support and therapies he needs..... I'm having such a hard time wrapping my head around how I am going to be able to be the needs of all of my sweet children. As hard as it is for me to admit, I feel like I am drowning.... and I know that only God will get us through this.
Our hearts are broken.... we are stunned to say the least.
Here's what I do know.... I have been beyond blessed with so many amazing friends and family.....and they all just happen to be amazing prayer warriors too!
1. Pray that we get more answers soon.
2. Pray that I can keep all the plates spinning, and be everything to all of my kids.
3. Pray for Jason and I emotionally, as we struggle with knowing that this awful disease, is genetically caused by the two of us together...how can that be?
4. Pray that this going untreated for 7 years, hasn't caused any lasting damage.
5. Pray that this doesn't mean the results for my son were wrong, and that they missed something.
6. Pray that we would have the right words to explain this situation to Kambree.
7. Pray for healing.
8. Pray for a cure.
9. Pray for us to find strength and peace from the hope that we know we have in Christ Jesus our Lord!
Thank you for following our families journey, through this crazy world. Thank you for loving us.
We will get through this.... with support from all of you....and with our faith in God.
Deanna, your eCademy family is here for you and Kambree. We will be sending prayers your way, and please let us know if there is anything we can do.
ReplyDeleteMrs. Barscewski, Mrs. Hett and Ms. Johnson
Thank you! I am now, more thankful than ever to have the eCademy as an option for education.... the flexibility it offers.... and the ability to keep her more germ free is going to be huge for us.... and if I need to shout this out to our legislators.... I happily will! ;)
DeleteDeanna and Jason, Jerrel and I are praying that God will watch over Kambree, keep her strong and healthy. God will tend to your needs and desires for Kambree. God will give the Drs. the knowledge and Godly ability to care for Kambree. That God will heal or find a cure for this disease. God will be with you and Jason when you are weak and worried and wore out. That God will fill you with his holy spirit and give you strength. We will hold you and your family near to our hearts and never stop praying. In God's Love, Jerrel and Andrea
ReplyDeleteLove you both....and thank you for always praying for and supporting us!
DeleteI am a friend of Heather Thompson Williams. Our adopted son has Cystic Fibrosis. Please feel free to message me with any questions/support that you may have/need. I would be happy to help I any way I can. We will keep your family in our prayers.
ReplyDelete