Tuesday, June 10, 2014
So, first of all, I don't really know where to start. :)
There has been an absolute OUTPOURING of love and help from so many of you - and my cup runneth over. And truly, our souls feel refreshed and renewed. The way God has answered so many prayers, the way He has calmed so many fears, the way He has simply taken care of things that we didn't even ask for...it's amazing. Just amazing.
Example - I was sitting (a rare moment that day!) totally overwhelmed by gratefulness Sunday by all the help being offered to us. But also, honestly, overwhelmed by the time it was going to take to plug everyone in where I needed help here at the house and when I was going to possibly find the time to do it (in-between our minds imploding from the day full of seizures and calculating fat and carbs and ketones). TEN MINUTES later...truly...I get a phone call from a dear friend offering to be my 'matrix coordinator.'
He even knows when the sparrow falls...
Just a couple hours later, another dear friend offered to do something that I had mentioned to Frazer earlier in the day (that would be helpful but that we didn't want to impose on anyone). We didn't even pray for this and yet, God saw our hearts and provided.
I've spent much of the last couple of days in tears...but most times, my tears were from joy and thankfulness at God's provision through so many of you giving so sacrificially. Ann Carlyle said to me today, "Mommy, remember when you were crying yesterday? Why were you crying?" And I was able to tell her that sometimes we cry because we are so happy and grateful because God is such a good God and gives us help. He loves us so much. So not only have your prayers and physical help been a tangible blessing to us, you are giving me moments of sharing God's love to my 5 year old...and she can SEE that love too. So thankful.
And now to the update on Milla...
She had another rough day Monday - she ended up having 4 mildly convulsive/stiffening seizures lasting a couple of minutes each - not sure what kind they actually were but definitely not her norm. And it's always scary to see a 'new' seizure happen.
We got in touch with the doctor by the end of the day and he told us to double one of her meds. This has made a big difference today. I felt like I could actually catch my breath (and let it out) a little bit - that and the constant help I'm getting with the girls and the house. :)
We also are now able to give her 20g of carbs - still surprisingly (well, maybe not so surprising) hard to do. But my mom found out that ChickFilA nuggets only have 5g of carbs! So baby girl got to have one of her favorites tonight. I can't tell you how happy this made me!!!
Please continue to pray for better days for Milla - today has given us at least a bit of hope that there are still things out there that can help her. But pray too that this increase in her med will last beyond the next 3 days or so. She has a history of doing well at the beginning of a med change and then sliding back. Also, please pray for her little body to get used to the sudden big increase. She has had many screaming fits today - which is a typical side effect for her with this med - but certainly not fun for anyone.
I am sitting here trying to figure out how to tell you all thank you - how to possibly express my gratitude. But there are no words adequate enough.
So I pray the Lord's blessing on you tonight and praise Him for His faithfulness to us. Morning by morning, new mercies I see...all I have needed His hand has provided.
Blessed is the influence of one true loving human soul to another. (George Eliot)
PS - I've been told the emails are being forwarded to others - if there is anyone that would like to be added to the email list, feel free to let me know and I will add them to the mix.