The past month... from begging to now.

On New Year's Day 2014, just over a month ago my youngest son, Gage, was diagnosed with Infantile Spasms or West Syndrome.  

FB post on January 1, 2014

Gage has been diagnosed with infantile spasms. This is a rare and very serious childhood epileptic condition. You can find a lot about it online like I did before he was actually diagnosed, but it won't make you think about puppy dogs and rainbows, or give you much hope for the outcome. But my child isn't a random article you read about on google. He is strong. He is a fighter. He is a child of God who is going to overcome this and have a future brighter than anyone can imagine. The doctors have been very positive that with the right treatment the spasms will stop and he will continue to thrive as he has been. This is just another hurdle that will make him stronger in the long run. Thank you for all your prayers and support. Once again we feel them each day and they are an immense comfort us.

FB post on January 2, 2014

Thank you so much for all of your constant prayers, texts, and phone calls. I apologize for not responding right away. Those that know me well know I hate talking on the phone and prefer texting next to any type of communication that can't be done in person. 

Most of the day I'm calm and beyond hopeful, hanging on to the doctors and nurses optimistic outcome of the therapy Gage will be on soon. But sometimes that fear of the unknown hits me like train and I can't breathe. I don't feel strong at all. I weep like a baby while he lays in the hospital crib kicking his legs as fast as he can to try and rock the bed. Then I get so very angry at God. I know that's ok. I know he can see inside my heart and see the love I have for my King, but I want to know why. Kids should not have to go through this. Babies shouldn't have to have IV's, EEGs, EKGs, CAT scans, MRI's or any other multitude of tests that seem to have an alphabet of acronyms. Like a toddler I want to stamp my foot and bang on the walls. I want to throw the blood pressure machine across the room. Then I want to sit down with an adult size Capri Sun (some call it boxed wine) and take a good long nap to forget about it all.
I miss Owen. It's only been two days since we left him with Nana and Da but he always manages to make me laugh no matter what. The other day I cried about something stupid and he put on a singing hat and danced stark naked through the kitchen just to make me feel better. That boy is always getting naked! I fear for his high school days and potential visits to the principals office. 
Insurance approved of the medication Gage will start when he wakes up from his nap. They call it "liquid gold" because of the giant cost of it. I believe they said one vial is worth upwards of some $20,000. He will have to stay with my mom for the two weeks he is on the shots because it lowers the immune system. We pray that it stops the seizures totally and that will be the extent of the medication. While he sleeps I'm slipping downstairs to the chapel. I have a lot to be thankful for, a lot to talk to God about. I'll try to update again at a later date. Thank you all!

 

FB post on January 9, 2014

Gage went 24 hrs without a spasm but had two yesterday evening. I talked to the nurse and she said to concentrate on the fact that two clusters are nowhere near the 8-9 he was having a week ago. He's responding to the drug and he is so much more active and expressive now! But each time he does have one it's like a punch to the gut. My heart feels like someone is squeezing it and I stop breathing. But it's FRIDAY and I'm going to be positive. He's getting better!

FB post on January 15, 2014

Need prayers for strength. I know it's always darkest before that beautiful light of dawn comes but sometimes I wish I could speed the clock up. Gage is good. We increased his meds to try to eliminate all of the spasms except yesterday he had some of the worst that I've ever seen. I've heard from several moms that this happened to their child as well after a couple of weeks being on the shot only to have the spasms stop completely days later. I pray with my entire being this is our course as well. If it's not then I pray there is another drug that will work it's magic. I pray pray pray and then pray some more.

FB post on January 16, 2014

From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I. Psalm 61:2

What's the word for more than overwhelmed? Super-whelmed? Craptastically-whelmed? Either one would describe my state of mind right now. But I still praise him even when weary. Gage is good. Still seizure free. We have an appt with a new pediatrician as well as a consult with UT Pediatric Epilepsy Center. While TCH is amazing I've heard from numerous IS families that they are the best of the best so that's what Gage is gonna get. Please continue to pray. You guys are amazing prayer warriors.

FB post on January 22, 2014

We saw Gage's new pediatrician who we LOVE! She put Gage at about 6 months development which all things considering from his traumatic start into this world AND the seizures she said it's really quite remarkable. We then went to the UT Pediatric Epilepsy Center and got a second opinion which I'm so thankful to Holly Guillaume for referring us there. Everyone there is so positive and they see no reason why Gage won't develop normally after his round of treatment is done. Yesterday I was a mess and today I'm just so... at peace. I know we aren't fully out of the woods, this is a marathon not a sprint after all, but today could not have gone better. Unless of course I won a trip to Paris and ownership of a Starbucks store, but I digress... Yes, he could develop other seizures down the road and yes other things might pop up but I'm going to take today as what it is... A blessing.

"Give thanks to the Lord for he is good, his faithful love endures forever!"

FB post on January 26, 2014

Wednesday morning I will leave here with Gage at around 5:30 to get to the medical center downtown for his 23hr EEG. This EEG is to see if the chaotic brain waves are gone. I'm told to be prepared that there may still be some but it should be noticeably less since the visual body spasms have disappeared. This will let us know where to go with treatment, if any at all, is needed after his ACTH regimen is over. I never imagined this would be my life when I became a mother again, but God has a purpose in everything and even though I don't understand it or want it I will continue to praise Him. This is far more than I can handle but He promises to see me through as long as he continues to be a fixture by my side. I still get angry at times. I still cry uncontrollably and hide under various counselors and ARD administrators desks when a panic attack comes at school but I'm getting much better at my 40 yard dash getting to those places before a kid spots me. My HS softball coach would be so proud of my base to base time! Anyway please continue to pray and I will keep you guys updated.

FB post on January 29, 2014

So I've read a lot today. Got to sleep some too, however I woke up to what I though was machine gun fire, but it was only G-man and his fire power farts. ️ I'm not a doctor but compared to his last EEG and the parts I've seen today his brain waves are so much cleaner and not nearly as chaotic before he started treatment. Now, like I said, I'm not schooled in reading them and he could still have some chaotic activity or spikes, but I know it's better. I'm at the park right now inside the hospital. This place is so much more child friendly. Owen would love it here. I miss my little man. He somehow talked his Popo and dad into taking him to the movies ON A SCHOOL NIGHT. Only him. But it is Zach's birthday so I'm glad his daddy is getting to do that with him. I've gotten several questions lately (privately) of how I'm able to do "this." I really don't know to be honest. Thousands of parents go through stuff like this everyday wishing they could be the ones lying in that hospital bed. I know I would in a heartbeat. But we aren't given that choice. I think the only way a person can "do this" is by hanging on for dear life to your faith in God and His promise to see you through it. Without my faith I'd be lost. Without the man that God chose for me I'd be lost. Without the family that God blessed me with I'd be lost. Without my friends that God placed in my life I'd be lost. The multitude of emotions that run through me all day long are astronomical. I don't always take it day by day. Sometimes it's minute by minute. Sometime I get so scared that I forget to eat...but I'm a girl and we don't mind that. ️. My King has a plan for my boys. It's going to be awesome watching them grow and achieve the stars. It'll be even sweeter because I've witnessed not once but twice how precious life can be and how fast those that you love more than your entire being, those more important than your next breath, can be placed on that precipice. Thank you for the prayers! Love u guys!

FB post on January 29, 2014 (later that day)

Ok. Here goes. The EEG showed no signs of the voltage associated with IS (infantile spasms or West Syndrome). So that's VERY VERY VERY good. He did however have a focal seizure not associated with IS. Focal meaning it's coming from one part of the brain. The doctor thinks if his assumption is correct that his outcome could be in fact far better if further tests show the exact area. This would mean anti seizure medication or possibly surgery(way way down the road if even) to remove that part of the brain causing the seizures which would leave him seizure free. But we are just beginning with this talk so I don't know very much right now or how much longer we will be here undergoing tests. Seizures do not in fact cause brain damage but his previous seizures (West Syndrome) ,which are completely gone now, would have if the treatment did not work. That's why they call West syndrome the most devastating childhood epilepsy. They could always return (30% of cases) but I'm not going there right now. Focal seizures are much more responsive to treatment. This was something I had prepared myself for but the brutal fact of it in my face is not something I'd ever imagine actually hearing. The doctors keep telling me this is a good thing and intellectually I understand and can appreciate that but as a mom my heart just hurts. I'm supposed to be able to fix the hurt and I'm absolutely helpless to do so. But like HE says "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." So I'm just gonna tie my rope and hang on to His promise and the doctors positive words.