Leasing an Angel
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to the ride or die

7/14/2016

16 Comments

 
I know some people are probably sick of me blowing up their news feed with these updates, but I know there are others of you, Luke's Ride or Die clique who are like, "Oh my gosh... why hasn't she posted... what happened?!?!" Panic ensues. I got you. I'm here. We are all good.

So, let me say. Luke's bone marrow responded beautifully to the "white blood cell making" medicine, Neupogen, he took yesterday. He also never ran another fever the whole time in the hospital. His seizure count was T-9, W-7, R-3. We are all over the place with the amount and the intensity. These seem to be over and you can almost see a spark catch him. It will happen a few times at the end of the seizure and it really ticks him off. All to be expected with the amount his meds are changing right now, but not easier to watch. It makes things so much harder when you can't explain to him what is going on. When he cries after a seizure, is it because it hurts? Is he scared? Is he mad? Or is it a neurological response? He used to laugh before he had one and I'm pretty sure it wasn't because it tickled.
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Yellow is before we started cranking Afinitor too high. Red is the past week and a half. Blue is after Neupogen. Not back to normal, but on the way. *Labs from Kosair not shown* Also, lunatic teacher friends out there, you know who you are, quit judging my box alignment.
Luke actually started feeling so great last night that he only slept for about 3 hours. What did he do the other hundred hours you may ask... sing to the entire neurology floor. He had a party and demanded I come. He seems so much more vocal in the past few days. I am associating it with the reduction of Sabril, but we have so many moving parts right now it is hard to say. Needless to say, as soon as we got in the car he bailed on me. We are home and there is so much more to discuss. Preschool? Surgery? Medicaid? Blood? (nice word bank) But I am signing off tonight because the 3,000mg of caffeine that I have ingested in the past 72 hours did its job, but clocked out about 2 hours ago. It is done and so am I.
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My hair is 90% dry shampoo.
P. S. Thank you all so stinking much for the love, text, prayers, and support not only for Luke, but for the whole family. This was an unintended repercussion of this blog and it is really overwhelming.
16 Comments
Fran Stubblefield
7/14/2016 07:42:42 pm

Steph
Where do I start? The littl girl that grew up next to me has become a wonderful woman and mom. I've been reading your blog and am just amazed by how strong and resilient you are. I'm sure there are days you collapse, it you have a marvelous support system in your family and friends.
Hugs to you and your boys!

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holly cross
7/17/2016 05:45:47 pm

Stephaine we love you and Luke and Sam so much. You are a very strong woman and each thing makes you stronger. You amaze me with everything you have been thru and going thru. The boys are lucky to have you as their mom. No need to thank anyone its our pleasure to pray and help with us. Im sorry I don't live closer I would help any way I can. Love you Stephaine!

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Beverly
7/14/2016 07:47:33 pm

You do not even have to thank us... That's just what friends do. Keep sharing and know we all are with you.💕💕

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marie
7/14/2016 07:51:56 pm

Rossi is praying, and so are we...

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Emily, Emma & Nate
7/14/2016 08:01:50 pm

We continue to send prayers up for you all! Stay strong, Super Momma!!

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Meegan
7/14/2016 08:12:39 pm

I'm in awe of you...and thankful for this opportunity to know about Luke. He's just like you - a fighter and so brave. Thinking of you often and hope my love reaches you.

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Brenda
7/14/2016 08:28:11 pm

I love you! ❤️ You amaze me! 🏋 Luke is blessed, 🙏

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Brenda
7/14/2016 08:28:31 pm

I love you! You amaze me! Luke is blessed,

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Deanna
7/14/2016 08:44:38 pm

May God hold you close and know his Grace will carry you through !!🙏🙏👊🏻👊🏻💪🏻💪🏻

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Rebecca
7/15/2016 02:50:36 am

So I woke at 3am this morning and you were on my mind. You are so amazing and I am thinking of you and praying for you. Love to you my sweet

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Jessica Farling
7/15/2016 04:44:54 am

Bless you all! I'm so thankful you are posting updates. We miss you guys so much and think of you often. We are continuing to lift you all up in prayer, especially our little buddy! You are such an amazing momma! Love you all!

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Mandi
7/15/2016 04:49:41 am

I'm loving the blog and finally being able to keep up with you all! I'm glad you are going home..... Praying for u always!!!! You are one of the strongest I know! Love u doll!

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Terri
7/15/2016 08:57:06 am

Thanks for the update, Stephanie. I know you have a million things to do, but we love to know what is going on with your sweet family--the positives and the challenges. It helps our prayers for Luke and for strength for you to be more focused. You are SO loved.

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Carly
7/15/2016 10:07:49 am

I am learning so much from these posts! Thanks for writing them. All the love in the world coming at ya!

Carly

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Joan
7/16/2016 11:11:04 am

Luke is an amazing little guy and I have loved him since he was born. I so glad to read these updates.
Just know that he and the rest of Luke's family are in my prayers.

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Lisa
7/16/2016 04:45:19 pm

Keep posting Stephanie. It is a blessing to so many! You are an amazing woman. Love you

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    Mother of two amazing little boys, one who just happens to be a TS warrior. 

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