Tuesday, April 28, 2009
The spasms have increased in intensity and duration, making Kylie more aware that something is going on. These changes frighten her, so we just do our best to comfort her and talk to her throughout. She is also having mini episodes that last just a couple minutes or less, and are pretty easy to miss, so we are doing our best to document what we see.
We will be sure to post any new findings after we speak with the neurologist. Until then, we anxiously await by the phone and continue to pray and enjoy every single moment.
Saturday, April 25, 2009
We're scheduled for all kinds of upcoming appointments. Every Monday and Thursday we have to go to the pediatrician for blood pressure, poop (blood...TMI, I know) and weight checks, all of which are potential harmful side effects of the medicine. That'll be at 4:30 in the afternoon.
We got our follow up EEG bumped up from Tuesday, May 5th to this coming Monday (4/27). So, hopefully that will yield some good news. I'm not sure if we're keeping the 5/5 appointment. I guess a little background on why the appointment got moved up. We called the neurologist yesterday and told him that the spasms weren't really getting any better. So, he called back and moved us up.
So, please keep us in your prayers on Monday. We are hopeful that the EEG will come back with some improvement versus the first one.
Tuesday, April 21, 2009
A little more good news from yesterday. Jody gave Kylie her first shot of ACTH Monday, and it went really well. Little Kylie didn't even bat an eye. The nurses that were helping were really impressed with Jody's handi-work.
We also got a few phone calls from various places about the prescription. Apparently our co-pay for a one-month supply of Acthar (ACTH, with an "ar" on the end) will be about $9,500! Fortunately for us, the good folks at NORD (rarediseases.org) specialize in helping regular folks like us out with the money situation. From the sounds of my conversation with Nancy at NORD, they'll be picking up the entire co-pay. Just ouf of curiousity, I asked where that money comes from. Apparently the drug companies make large donations to this place. Think about that for a second. Seem kind of circular? I guess the business of helping people is really a business.
Here's the scoop people (and by people, I mean people that read this, and I have no idea how many that is). We're super excited to be going home, but still super scared. We would love all the company possible.
Just note that since this medication really compromises Kylie's immune system, we can't have anyone over that's been sick or ANY children under 15 years old. Once we know who is in charge of the scheduling that kind of stuff - we've got a decent idea who that will be - we'll post that and we can get everything coordinated. I hope that makes sense.
Big thanks to everyone that has been here for us throughout this interesting journey. Props.
Alright peeps, we'll talk to everyone soon.
Monday, April 20, 2009
Our pastor, Tim, was up when we got the good news. He said those were the best two words of the day. I couldn't agree more, even though "MRI" isn't technically a word. Tim is awesome, even if he is grammatically challenged.
So, the story. Our French buddy, Dr. Le Pichon came in with Dr. Allaboun and "the financial aid lady" all strolled in. Without missing a beat, Dr. Le Pichon just looked at us and said those two wonderful words. We thanked him a ton (and everyone else) and offered to buy them Applebee's for a while - maybe life!
So, we certainly need the prayers to continue, because we're not out of the woods yet. At least the forest now has some beams of sunlight shining through.
How can anyone not believe in Him?
These last couple of days have been quite challenging and have really tested our faith in Him. Through the help of so many wonderful people that He has placed in our lives, we have been able to truly see Him as our Father, the God almighty, who has and will continue to lead us along the path that He has created for us. Going back and recounting all of the moments where His presence has been so great, has helped us not only see Him but feel Him right here. How awesome is He! It is through Him that we will get through whatever is in store for Kylie and our family, because there is no other way. He is our Father, and He will never leave us. He loves us so much and that feels so great! He gave us this beautiful, amazing little girl, and we love her more than anything! We have always felt so blessed that we are her parents, that He gave her to us. He is definitely showering us with so many blessings and all the love we need. I'm not sure either one of us really and truly knew the power of His love for us, but it is AMAZING!! We would not want or have it any other way...there is no other way.
He carried us through. He has prepared us, and we are ready to follow.
Sunday, April 19, 2009
He’s not here? Where is He?
This is often a question we ask ourselves when dealing with something as life altering as all of this.
Everyone’s faith is shaken from time to time. Sometimes these unfortunate circumstances cause one’s faith to crumble. For other’s, these trying times only revitalize faith. It’s hard to imagine He is present when something like this happens. However, when you look close, it’s impossible to miss Him. He’s always there, moving hand-in-hand through life.
It’s not for us to know why He would plague a happy, beautiful five month old girl with something like this. It’s for us to bow down, and accept His way. It is plain to see He is here with us.
-Like how did Jody have the foresight to know this was something serious and to record the first of her episodes? The team at the hospital is amazed at how quickly we “got the ball rolling”, based on the onset of symptoms. Jody was not working alone.
-Like how did our pediatrician move our EEG from June 1st to April 17th, which was just one day after our appointment with her? Dr. White was not working alone.
-Like how did the neurology clinic at Children’s Mercy, which was booked and stops doing EEGs at four PM, somehow have an opening only minutes after we arrived around three thirty?
-Like how were my prayers answered that the doctor would immediately know what was wrong? While it wasn’t the diagnosis we wanted, it came quick. Dr. Le Pichon wasn’t working alone.
-Like how did the Pharmacology Clinic have one vial of the medicine we need – with roughly enough medicine to last a five month old girl over the weekend?
-Like how did that stupid Miley Cyrus song, The Climb, come on as we were having some quiet time together as a family?
There's always gonna be another mountain
I’m sure there have been plenty of other examples, times where we were either too busy or too preoccupied with despair to notice His presence. It is definitely difficult to remain positive throughout all of this, so we are making great efforts to reflect upon all of these truly awesome moments where He has been so very much with us.
Praise and Worship Him. He is just so incredibly awesome!
So Jody and I finally got to sleep last night a little before midnight. The crew that came in to check her vitals at four woke us both up. Four hours of sleep seemed like forty. Fortunately or unfortunately, we were both sleeping pretty soundly, so waking up from a deep slumber to our current place was difficult. I couldn't stop shaking until I started with this update to you all. It's so hard not to dwell on all the what-ifs. By the way, this is me, Matt, writing. Jody is doing an amazing job of lifting me up. She is awesome.
We saw our neurologist yesterday morning. He had some relatively encouraging things to say.
- He thinks that based on her development - which is right on track - that she has the better of the two types of this. Without getting too detailed, we're hoping for the variety of Infantile Spasms that is not a symptom of an underlying condition.
- We should know for sure on Monday when we get an MRI (scheduled for 7am). Please pray that everything comes back clean on Kylie's little head. That would mean the Stump family would probably get to go home later Monday or Tuesday.
- Of course, we will be giving her the injection at home...so scary...for the next week or so until we can get another EEG to see if the meds are working. If the meds are working is probably the most important of all.
- The medicine she is on is actually a hormone that is naturally occuring throughout the body. She's just getting it in massive quantities. One of the downsides to the ACTH is that it compromises her immune system. So, what does that mean? We'll be locked up in the house for the next couple of weeks (once we get home). No visits from sick people or kids under 15, or going out in public places (church, grocery store, etc). Not kidding.
1. A "clean" MRI on Monday
2. A reduction in the number of her episodes over the next few days which would mean the meds are doing what we want them to be doing...getting rid of this affliction. It sounds like this would also lead to a more encouraging EEG.
3. Lastly, please ask Him to shower Jody and I in his Grace, Love and Mercy. I suppose it is not for us to ask why this happened, but to accept it as His will and continue looking for the ways that He is here with us every step of the way, helping us through this trying time.
It might be kind of corny, but I keep thinking about the famous inspirational quote (Jody has it on a key chain for crying out loud)...I'm going to butcher it, but it goes something like this: a troubled sould sees only one set of footprints in the sand and asks God, "Where are you, why have you left?". God responds with "Dude, I've been here the whole time. Those footprints, those are mine as I carried you. You didn't see me at first because you were lost in your suffering." We can use all the reminding that He won't leave us to battle through this alone.
Since we're taking this one moment at a time...one day at a time is too much to handle...we'll focus on loving on her all day today, Sunday. I know He rested on Sunday, but I hope the sheer volume of prayers regarding little miss Kylie will move Him to act in a swift and efficient manner and maybe work a little OT.
Here's a fun little snippet. Jody makes up songs to sing to Kylie - maybe to help her calm down when she's fussy or maybe just to sing. Either way, Kylie loves hearing Mom's singing. The last line to the original song Jody concocted is "Kylie Mae Stump gets lots and lots of love". We had no idea how much that really is true.
After getting roughly twenty minutes of sleep Friday night, the truck loads of visitors we saw throughout the day on Saturday did an amazing job of lifting both of us and derailing us from those dark, dark thoughts that continuously creep into your head at times like this. A huge thank you to everyone that has lifted up prayer, have come up to see us, called or emailed to offer their support . We cannot begin to express how much it means.
Friday, April 17, 2009
We busted tail down to neurology and got an EEG done. The doc came in and pretty much immediately knew - or at least I could tell he did. The nurse gave me some hints and my heart immediately dropped completely out of my chest.
We went back up to the room and that same doc came in and punched us both in the gut, figuratively, of course.
Infantile Spasms. Sounds pretty benign, right? Not so much...
Today has definitely been life changing and makes us appreciate every moment even more than the last.
The bright side: 6 weeks of ACTH, a relatively dangerous drug that has show some proficiency at fighting this. Also, a three-week supply of ACTH is about $22,000.
Yeah, that's what I said. No misplaced decimals there.
Luckily there was a "financial aid" person in the neurology department. It is her job to procure this drug at a reasonable cost. Sounds kind of like a "don't ask, don't tell" policy".
We should know within a couple weeks if the drug is working. They were all shocked at how quickly the pieces fell into place for us to get in here. Her first bout of this stuff was on Tuesday. Here it is just four days later and we've got our diagnosis (although it isn't pretty). Also, the hospital just happened to have one "vial" of this drug floating around. One vial is roughly enough for a five-month old for a couple of days (over a weekend).
Thank GOD for that stuff. Thank Him and only Him (well, the docs might deserve a bit of cred, but we all know where it came from). I don't really understand any of this, but I know He does. I know that we're in good hands.
Now, for the downside...we'll just have to hope that He doesn't have it in the plans for there to be a downside. A few minutes researching this nasty condition online with break your heart. With that said, there is no downside for now.
Please pray for Kylie...
Monday, April 13, 2009
Here are a couple of pictures we snapped during her first time eating peas and then carrots. It is apparent that she isn't too found of her peas, since they end up on her face and not so much in her mouth...either that or she is trying to give some back and share them with me.