All clear!

This morning my mind is just blah.  Gage is good.  He is taking his first nap of the morning after waking up at 5 ready to go.  Without steroids in his body or seizures to wear him out he's like a normal 10 month old going to be at 7 and waking up at the butt crack of dawn.  It's funny how much I used to wish Owen would sleep all the time when he would wake me up at 5 in the morning ready to play but having a baby that sleeps ALL the time just isn't normal, it isn't right.  The little things you want more of like sleep and a bit of quietness just depresses you when that's ALL you have from your baby.  It's not natural.  Sometimes I think this is God's way of making me look from the outside in for once.  I finally understand the phrase "the grass is always greener on the other side" more so now than ever.

The doctors still don't know why Gage went tachycardia/tachypneic.  He was breathing at 80 breaths per minute at rest...WAY too fast.  But they tested for everything and eventually just chalked it up to him coming off of the steroid.  He calmed down his breathing and it didn't happen again.  While there he did some odd jerky moves that ended up being gas :o), but it still freaked me out and made me cry. All I had to do was video the movements on my phone and send them to the office manager at UT Pediatric Epilepsy Center who forwarded it to Dr. Watkins, who not 30 minutes later came to our room, during a conference no less, to tell me he didn't think it was anything but just to reassure me he would set up a short EEG.

We got the wonderful news not 10 minutes later after it was done that there were no signs of epileptic activity or seizures! Dr. Watkins then called me to make sure that I had heard and if I had anymore questions or concerns.  I can't tell you how awesome that feeling is to LOVE your kid's doctor and the nurses that work with him.  The relationship that they have with Memorial Herman Children's Hospital and their attendees is also wonderful.  I have absolutely no reservations about Gage's treatment.  I encourage everyone with a medical condition or crises to ask around for the best because to have that trust and relationship with you or your child's doctor is a feeling of absolute contentment that I cannot even describe.

Thank you for all the prayers and texts and personal messages.  God bless you all!      

The first born child of Hale Yeah

My first son Owen was born on 10/12/07 at 3:42pm.  It took me 35 minutes to push that booger out and I will NEVER forget when the doctor laid him on my stomach and he looked right at me with the most incredible blue eyes that still grace his face today.  All my life from the time I started collecting my first baby doll I knew I wanted to be a mom.  It was something God placed inside my heart, a yearning that I knew without a doubt would come true some day.  It took us over a year to get pregnant with Owen and the moment I found out, the moment that stick came back with a plus sign I was hooked and in love.  I had a pretty normal pregnancy, gained 75 lbs (I'm serious, I had my own gravitational pull), yelled at my husband for eating the leftover pizza that I went looking for at midnight, had gas pains, bloating, heartburn, etc.  I was SO HAPPY!  Then that beautiful day when we got to take him home from the hospital of course everything was just as wonderful.  He slept through the night, never cried and I resembled that lady on the pampers commercial with the flawless complexion and perfect hair....sigh....NOT!

O to the M to the G the kid was HIGH MAINTENANCE!  He woke up ALL the time during the night and not just as a newborn.  He broke out to everything even Dove soap and there were times when he would cry for so long that I would just cry right along with him.  My husband would come home from work and not know which one to console first, him or me.  And the ear infections that first year, one right after another... I thought I was going to loose it when I went 24 hours without more than an hour of sleep holding him because that was the only way he'd stop crying from the pain.  When he started daycare it was a nightmare because he would wail as soon as I gave him to the teacher which would of course make me feel like a horrible mother and I'd start to cry as soon as I drove away from the place.  That first year of his life was the absolute hardest, yet the absolute best...and now it's gone.  I wish I could go back to that younger version of myself and tell her it was all going to be ok.  That she'd get to sleep again...in about another year. ;o)  I'd tell her to cherish those moments I wished would go away, like when he would wake up wanting a bottle or clinging to me when I dropped him off at daycare.  I'd hug her when the postpartum depression hit and tell her to pray more.

I owe my first baby a lot.  He was not an easy baby and you know what he's not easy now.  He's a holy terror in the morning until he's had his chocolate milk and if you don't give him a least 30 minutes to wake up before you get him dressed you better call the Pope because you're gonna need a exorcism.  He eats way too many sweets and is louder than a bull in a china shop.  But he's got a heart of gold and can make me laugh so hard sometimes I cry.  He loves intensely and without boundaries.  He is an awesome big brother and has a love for Jesus Christ that is deeply rooted.  

Without my Owen, without my first child I would not have made this journey this past year with his baby brother as well as I have.  Owen taught me that there are things we ourselves have to go without in order to let them prosper, like sleep and our sanity.  He made me stronger when I wanted to break down and simply cry from the insurmountable pain of not knowing if Gage was going to make it those first six weeks of his life.  I had to put away the anxiety meds that I so badly wanted to take to put me to sleep because I had to take him to school or to the park.  He brushed away my tears when he thought I was crying from my shoe lace breaking when in reality I had just received a phone call from the NIC unit that Gage had to be intubated that night.  You see to him all he had to do was pray and that was that.  No more worries. Gage would be fine.  Owen has a strength in him that he pushes on to me even when I don't want to be strong because he expects nothing less from me.  He made me the mother who was able to pick herself back up and carry on.  Just like his name sake, I OWE God for him.  He is my strength.  So many times siblings of special needs kids get lost in the process of caring for the one in need, not on purpose and certainly not because they love that kid less, but because of the amount of time those doctor visits, and overnight hospital stays take away from the parent's time at home.  I'm thankful that I was blessed with a family on both my side and my husband's who support and care for Owen when we are not able to.  Because of them he is never starved for love or attention and I thank God for them.  

Well I'm done writing my novel...it was certainly therapeutic and now I'm going to crash and dream about unicorns.

God bless all.    

You'll never know dear, how much I love you...

I will never forget when we were first admitted to the hospital for testing with Gage...that awful, gut clenching moment that the neurologist told us we had entered a "wait and see" game with his development. He didn't want to give us false hope he said. 

"Will my son ever walk?" I asked. 

"I don't know"

"Will he ever talk?"

"I don't know that either."

"What about sitting?  Or eating?  Or anything?  Do you know anything?" (At this point I might have gotten a tad irrational)

"No, I'm sorry but we don't."

How do go on from that?  How do you make yourself breathe again when your body is already supposed to know how to do that for you?  At one point I had to envision my lungs actually filling up with air in order to force my body's involuntary  system back into place. IT HURTS THAT BAD. But eventually that minute runs into the next and so on until you're like I am so high from today's emotions first at work with a bunch of crazy teenagers to at home where that doctors reply of "I don't know" is abliterated in 30 seconds of pure joy. Thirty seconds that started when your oldest shouts, "Mommy, Gage is growing up!" and you turn your head to see this miracle child, this child who a little over two months ago was diagnosed with the "most catastrophic of childhood epilepsies" SITTING ON HIS OWN FOR THE FIRST TIME EVER. 

This marathon is still in its first few miles but man, God sure knows how to fulfill that thirst!  DO NOT LOSE HOPE. DO NOT EVER GIVE UP.  

Psssss...And if you are a parent to a teenager, after the day I had today at work with my kids, GOD BLESS YOU. 😋

raw...

I try to stay positive as much as I can because no one wants to be near a Debbie downer all the time, but sometimes...sometimes I just want to cry.  Nothing prompted it, no earthquake or cataclysmic life altering crises has happened, I just simply am not feeling inspired.  I'm in one of those moods where I want to throw something and then break something else without having to pick up the freaking pieces!  We don't get to choose our fates or our futures, we don't get a choice in anything and sometimes that angers me so much that I just want to scream!  I know it's not right, it's not the Christian way to think but I can't help it.  For once I want to know that my baby is through the worst of all this hell.  For once I want to know that everything is going to be ok and I don't want to hear that crap about it will be no matter what, because you know what?  It may not be.  AND THAT KILLS ME.  It isn't pretty, these feelings that I'm having, but if you really want to know the truth of the matter, if you really want to know the real, the TRUE emotions that a parent of special needs child goes through, a child with severe medical issues, then welcome my friend.  This is the part of me that I don't like people to see because it's not the happy, laid back person that I normally am.  This is the part of me that's a parent who is terrified and angry at myself for being so.  I'm not angry at anyone other than the enemy for making these feelings of darkness overtake me when my child is the one that is actually fighting the battle that I cannot help them in.  And really that may be the crux of the matter today.  My complete and utter helplessness of taking on his enemy.  I can't do it.  God has completely taken the reins from me and nothing is more terrifying than not having control over one's destination.

I also can't help but think that God knows this and wants this attitude from me, from us, because without going through the pits of hell, without experiencing that gut wrenching, awful, and soul crushing pain there is no way we could even come close to experiencing His grace...His love...His promise that He will see me through this feeling of helplessness.  So really I guess this is like a 180 back to where I should be...filled with hope... Gosh this life is beautiful, but man is it beyond exhausting.

PS... Just so you guys know as soon as I finished with this Gage rolled over and started smiling at me.  As I cry out of pain he hears my sorrows and offers comfort. :o)

Reaching for the light...

We are still in the weaning stage.  Starting tomorrow Gage has 6 more days on the acth.  He is slowly coming back to himself.  He is definitely more active and not sleeping as much during the day, but I'm still waiting patiently for my baby to completely resurface.  When I put my face up close to his he grabs on to it and starts kicking like crazy, so I know he's there underneath the blanket of drugs in his system. He no longer stays on the 5x4 blanket I put down for him on the floor as he's started to roll around like crazy.  He never did that before so today I rejoice in this "newness" of not being able to simply leave him on the middle of the bed and dash to the other room for a diaper.  He struggles with his new weight and how to exactly maneuver it, but so far he's doing a great job.  I know a lot of the swelling in his cheeks will go down, but I think I might miss that part... my sumo wrestler baby.

Tonight I want to specifically pray for those still fighting the spasms, those parents who haven't found the right miracle drug.  I know we are still very early in the game, that they could come back, but for now it seems we have been given a reprieve from that fight that will hopefully last us the rest of Gage's life if we are lucky.  I hope God wraps his loving arms around those families and releases a calming balm over them.  I want them to know He hasn't forgotten or refused them but instead has set out a different course for them that they will understand and thank Him for later.  I pray that when they seek peace they find it immediately in Him.

This marathon has just started for us and I thank each and everyone of you that read this and then remember us when you get on your knees and pray each day.  My family is blessed because we have each other and we are strong in the Lord.  I cannot imagine where one finds strength in times like these if they do not believe in His everlasting love...

Super Gage beating IS's Arse!

What if they don't?

Ok, so today starts the 12 day weaning process of ACTH aka "Liquid Gold".  I'm excited yet hesitant about it.  I am so looking forward to seeing my baby's breathtaking smile and hear his chuckle but I am so scared of a relapse.  Sometimes they go away and never come back.  Sometimes they go away and reoccur down the road, usually within 3 months.  Sometimes this isn't so bad as a second treatment could take them away again.  I tell Zach my fears asking him, "what if they come back?" to which he replies, "what if they don't?"  I need to take that attitude of "what if they don't?"  Gage deserves this attitude from me.  He's showed time and time again that he is not giving up, that he is here to fight.  My sister tells me that my thought process is my heart's way of protecting itself from the worst.  That by imagining that the worst will happen I can prepare myself for the onslaught of horrible emotions that will occur if that "worst" happens.  I know that I need to NOT do this.  God tells us to live and think of only good things.  Owen told me yesterday on the way home from school that when Gage is 6 and he's a teenager (his math is a little off ;o) ) that Gage will have to sleep on the bottom bunk and he will stay on the top so that when he wakes up from a bad dream he can tell his baby brother, "It's all right baby boy, it's only a dream.  Nothing will happen to you."  I told him how sweet that is but how that's what we always tell him and he doesn't listen.  He looked at me point blank and said, "Well, maybe that's because you don't let me have cookies in bed."  Yeah, kid that's why.  Silly boy.  He keeps me grounded a lot of the time when Zach is off at work.  But that conversation did get me to thinking about the future and how there was no hesitation in his voice that Gage would be able to walk and talk and tell him things.  That his prognosis was without a doubt AWESOME.  God wants us to believe in him like the little children do, without thought, without doubt, so I'm going to try to follow after my oldest and believe without hesitation that only good things are in store for our family and for Gage.

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.