More tests...and hopefully more answers.

Next week Thursday, Gage will be having quite a few tests done at Memorial Hermann Children's Hospital.
First up will be the MEG scan.  A MEG scan is a functional neuroimaging technique for mapping brain activity by recording magnetic fields produced by electrical currents occurring naturally in the brain, using very sensitive magnetometers.  This is used, in Gage's case, to hopefully localize regions affected by pathology before possible surgical removal.  He will not be going under for this, however he will have to be sleep deprived.Next up will be the MRI.  He will have to be sedated for this procedure, which kills me.  He's had two done before under sedation but it still makes me nervous.  Many of you are familiar with the MRI, which is basically just a picture of the brain.  In his previous MRI's no abnormalities, lesions or cortical dysplasia (if you want to get technical) was found, but a lot of times they go unnoticed until the child is over two years of age.  Our brains change and grow so much in those first years of life that it's often not detected until children are older, which is why repeat MRI's are often done.  Why both tests?  They are used in conjunction to identify the location or source, if there is a source, of the focal epileptic activity that Gage is having.  It helps for me to visualize it like this... you lay the MRI picture down which shows the framing of the "house" and then you lay the MEG scan which shows a colorful picture of electrical activity over the "house" to see where the occupant, or abnormality, is coming from.  Kinda like heat ray vision to see where people are in a house from across the street.  It's not technically like that but it's the way my simple minded brain can process it.  Finally, the LP (lumbar puncture).  He will have this procedure while he is still under general anestheisa.  This is to test for any metabolic disorders which could be causing the seizures.  I don't anticipate them gaining much from these tests, but they're the smart people so I'd rather have it all done at once then come back years later to find out a metabolic abnormality was the cause.  All that may seem easy enough but it's going to make for a VERY long day which will start VERY early. Zach will be doing this solo with Gage as I start back at work next week.  It'll be the first time that I won't be there with him during tests like this.  While I know daddy's got him and will spoil him rotten it kills me that I won't be there.  I'm scared and already having nightmares about it.  I know I could take off but I also know there will be plenty of other times where I will need to be off of work for some other random test or doctor appointment that Zach won't be able to, but that's not going to help me get through the day any easier.I guess the only last question is why are we doing this, having all these tests performed?  That's a hard pill to swallow for me.  We are trying to see if Gage is a possible candidate for surgery.  While his epilepsy is pretty much under control with medications, the seizures types are changing and will most likely continue to change as he gets older.  Apart from the spasms that he had early on I've only seen him have one 20 second focal seizure (which you never forget) and a couple of head drops which have reduced to pretty much nothing since we started his second medication 3 weeks ago, but like I said there will always be a possibility that another type will present itself in the future.  Sure we could add another medication, but then that would be 3 total.  Then what if he needs another or we have to increase the others?  While the thought of cutting into my child's brain leaves me breathless and causes my heart to squeeze painfully how can I deny him the chance of living seizure free with no medications coursing through his body.  Medication is a necessary evil.  While it controls the seizures it also slows down development.  His cognitive function is slower.  His sleep schedule is all over the place.  He tires easily and sometimes can get hyper active which doesn't allow him to fall asleep easily when he wants to.  It's a roller-coaster ride that I'd take any day over him having a seizure but it still all sucks royally.  This path is a long one and the journey will never really be over but we will push and push and push until we as parent's know that we have tried absolutely everything to make his quality of life the best that it can be.  God willing we will receive a ton of information and answers from all of these tests next week.  I'll update then.  Until then please, please pray like you have been.Thank you all so much for the support.God bless,Amy    

If you scream, can God hear you better?

Gage's neurologist called today with the EEG report.  He is now having atonic drop seizures.  These are occurring in the same region that the focals seizures were coming from so we are adding another medication to treat those.  So far the keppra, which is used to nip the focals in the bud, is doing it's job and hopefully adding this second medication will stop the other kind too.  This does not change his prognosis, but it is something that we need to treat so he can continue to thrive as he has been.

This was not something that we wanted to hear but I still praise God even as I want to scream and cry and hit something.  He is and has come so far in such a short time...that's what his awesome neurologist kept telling me on the phone as I sobbed into his ear.  He's such a sweet man.  I can't imagine it's every doctor's wish to console a hormonal pregnant woman over the phone about her child, but he did.

What's our next step?  Deep breath...here goes.  We are going to do a repeat MRI very soon as well as a lumbar puncture while he is under to test for any metabolic disorders that could be causing the seizures.  We will also be doing a MEG scan.  A MEG scan is used in conjunction with the MRI when looking for any abnormal brain tissue that may be causing Gage's seizures.  Though surgery is not on the table yet these are all preliminaries to see if he is a candidate.  Can I be hopeful that this may be the answer for us?  That surgery may take all this away and allow my child to be free of medications?  Part of me says yes, while the other part of me is so fearful of that possibility... Cutting into my child's brain?  How can I want that at the same time not want that freedom for him?

Plenty of people live with epilepsy and lead enriching lives.  They have families, they go to school, they drive cars, have successful careers... But I still hate it.

Peace has already settled over me.  Gage is a fighter and so am I with God in my corner.  

One more hurdle...

Gage's eye doctor appointment today went... ok.  I knew he had some delay there as well, with his vision, I just never expected to hear that he was only seeing on a 4 month old level.  Structurally, his eyes are beautiful and he has no need for corrective lenses.  Instead he's visually impaired in the neurological sense.  I was told that in 75% of cases like Gages, who had IS, these vision impairments do improve with therapy, but by how much I don't know.  Gage's neurologist feels like he just needs more time and that with therapy in six months time his vision will improve dramatically.  Does it make me a horrible parent to wish that this could all be corrected with glasses?  For once I just want something to come easy for him.  He's such a happy baby.  I can't count on one hand the number of times he's actually cried because he was mad.  I want so much for him and it kills me that there's one more thing that he will have to work his ass off for.  I'm angry for him, hell I'm just plain angry at everything because this just all sucks so much sometimes.  I feel guilty for feeling this way when so many others have it so much worse, but right now in this very moment I can't help but want to beat something.  Life isn't fair.  I know that, I've been taught that, I've seen it first hand, but I can't help but wish things were different...easier.  Most of the time I'm ok with everything.  Gage is improving dramatically.  He's reaching milestone after milestone.  His vision and eye contact has gotten better since he's been seizure free.  He's showing me that he will never ever give up and he's taught me that no matter what life throws at you there is no other choice available to us BUT to take a deep breath and continue on.  The sun will rise again tomorrow even if you feel like your entire world is being destroyed.  He's taught me that when we do wake up on that next day we can choose to either fight or lay down and wallow in misery.  Tomorrow I know will be better.  I'll start researching services for vision therapy and buy all the books that I can find in regards to that subject, but tonight I just needed to vent a little.  

Surprise!!!

2%.  That's what chance I had of getting pregnant again on my own...EVERY OTHER MONTH.  I had resigned myself to the fact that I would never again carry another child after Gage...and I was ok with that.  More than ok because with the diagnosis of epilepsy on the plate for one of my kids  I knew life was going to throw us more curve balls than we had expected with a second child.  I mean a total of like 50 something days spent in various hospitals and emergency rooms in less than a year has already proven that.  Plus the added trips to private physical therapy once a week (twice during the summer), a job (that I love I must add) where I deal with emotionally disturbed kids on a daily basis, and a wonderful supportive husband who has to travel a lot for his job I'm more than ready just to go to bed when I get home every day.

I'm scared too.  I know the odds.  I know they're in my favor for this child not having IS or any other form of epilepsy. I also know Gage's medical condition at birth that is now fully resolved is very unlikely to happen again but still it leaves me awake at night.  My mind still wanders to that dark place of "what if it happens again."  I'm not that strong.  God doesn't only give us what we can handle.  I learned that enough times this past year.  I do believe, however, that he gives us these trials to bring us closer to him because without that big man upstairs in our corner we have absolutely nothing to hold onto when we fall off that cliff.  

I also worry that with another child I won't be able to give Owen enough time.  He already has to often take to the sidelines with Gage's condition and various appointments but what is it going to do to him when Mommy has to take care of another baby?  And then there's of course Gage who requires so much more than the average one year old.  He progresses every day and he's getting stronger but he's still so much like a 6 month old.  How am I going to give him the extra time and attention he needs?  I'm terrified...but I'm also so very happy.

 This child is a miracle.  It is a blessing.  Years from now like my mother-in-law said I will look back on this news and laugh, wondering how we did it all.  Most don't announce their pregnancy so soon and we debated for a while to hold it to ourselves but in the end I wanted others to know that miracles do happen.  We didn't plan for this but we are thankful for it.  I wasn't supposed to have another chance at carrying such a blessing, but this is just another instance where He reminds me yet again that He is completely and totally in control.  I'm still gonna worry.  I'm still gonna question if I'm strong enough for this next chapter, but God's got this.  He always does.

  

A letter I'll one day give to my sweet Gage.

What a year it’s been baby boy!  A year ago today at 1 pm you were born and immediately taken away from me and placed on oxygen.  You were breathing too fast but at first glance that was the ONLY thing wrong with you.  You were beautiful and perfect and so BIG the doctor almost dropped you upon delivery. Your older brother Owen was so excited that you were finally here.  He wanted to be the only one to hold you but the nurse said she needed to take you back to get to the bottom of what was causing your breathing issues. You were in the hospital’s NICU for five days.  I was an emotional mess because I think deep down I knew something else was going on.  The pediatrician said that you just needed time to adjust to life outside the womb before you could come home with us, but something just didn’t feel right.  I kept asking the nurse how long it usually took for babies to regulate their breathing and my heart dropped on the fourth day when she said that normally it only took three.

It was Friday morning when our world came crashing down.  I was at your granny’s getting ready to come and see you when the hospital pediatrician called and told me that you had gotten sicker overnight.

“Something wrong with his heart…cardiologist has been called…need to get here as soon as possible.”

My hormone riddled body couldn’t process the next steps to take.  I tagged my purse off of the couch and shot to the front door sobbing and calling Zach.  He wasn’t answering!  What the hell, he needed to answer!  I called again and again.  I was losing it.  I got in my car when he called back and told me he had been on the phone with the doctor who called him when I hung up sobbing.  She wanted to make sure I didn’t try to drive myself to the hospital in the state that I was in.  “Baby, calm down.  Our baby boy is going to be fine.”  He repeated that over and over.  With a guttural cry I asked that one question that haunts every parent’s heart …“Is our baby going to die?”  

“No!  Amy our boy is strong and he’s going to be fine.  Go to your mom’s school.  I’m going to call there and your dad.  DO NOT drive up there by yourself.  Promise me.”

I agreed, my mind going numb with grief.  How I got to your granny’s school is a mystery.  Once Popo arrived to take us I sat in the back of the car and laid my head on the back of the passenger seat.  I don’t even know if your Popo and Granny asked me anything, I was that gone.  I must have gone somewhere else in my mind because I cannot recall a thing about that drive.

When we arrived we flew up to the NICU.  Coming to your room I stopped and stared.  There were at least a dozen nurses and doctors surrounding your tiny bed.  I approached slowly and they looked up, parting like the Red Sea.  I must have looked pretty scary because one of the nurses got me a chair to sit in next to you.  Your tiny chest was working so hard to keep you alive.  I touched your foot, your hand, your head and the nurse asked if I would like to hold you.  I nodded mutely.  She placed you in my arms and the tears immediately started to fall again.  Everybody else went away and it was just me and you baby boy.  I rocked you until your daddy arrived.  He walked in and I completely lost it again (yeah I know…again) and the nurse quietly took you back to your bed.  He held on to me whispering in my ear that everything was going to be okay.  That we just had to pray like we have never done before and God would see us through.  

Your daddy is one of the strongest men I know, but seeing you so tiny and so red from having to work so hard to keep on breathing broke him.  I think that was the only time that I was the strong one. I wrapped my arms around him as he stood hovered over you and whispered the same comforting words he had just said in my ear back to him.  “He’s a Hale and Hales don’t quit.  He’s gonna be home before we know it.”

The cardiologist finally arrived saying your condition was too complicated for you to stay there and asked what hospital we wanted to transfer you to.  We chose Texas Children’s in downtown Houston.  The Kangaroo Crew was called to transport you there by plane.  Gently they placed you inside a tiny box on a huge stretcher and strapped you in.  I sobbed and whispered every bible verse I could remember as they took you away.  Sliding down the wall of the hallway I closed my eyes and started rocking.  

That’s when one of the head nurses came and sat down before me.  She took my hand and said, “Hey, momma, I know you’re hurting right now but you have to get it together and take care of yourself because that baby is going to need you.  It’s going to be a lot of long days and a lot of long nights and you’re going to want to quit sometimes, but you keep going and you keep going for him.”

I still remember her face.  I wish I remembered her name so I could call and say thank you.  It was one of the conversations that will never leave me.  It propelled me into action and got me going.

The ride there was brutal.  Your daddy and I didn’t speak a word, we just held on tight to each other.  It was surreal seeing the lights of the hospital glowing in the night.  We parked and met your Da on the way in.  He hugged me tight and followed us up the elevator and to the cardiology NICU.  Once there we met the doctor who said that he thought you would be best served in the general NICU downstairs.  He said your heart condition was not a structural issue, instead he thought you had a virus that was causing your heart to work so fast and so hard.  Once again we followed as they wheeled your small bed onto the elevator and down to the main NICU on the 4th floor.  You then were hooked to over a dozen machines and wires.  You had multiple IV’s and electrodes taped to your little body.  No one should have to see their child that way.  It’s not right.  I became so angry with God at that moment.  I should have been at home with you, so tired from feeding you all night, not exhausted from crying in fear for the last ten hours.  

From that point on we met at least 10 different doctors with tons of letters after their names.  A neurologist, a hematologist, a cardiologist, etc.. Each one had their own opinion too..

…Possible calcification of the brain, meningitis, bacterial infection, viral infection, metabolic disorder…

The list went on and on to the point where I just had to tune it out because the bottom line that I got was that you were VERY sick.  To me it didn’t matter what you had as long as there was a way to treat it.  I kept stealing glances at you, silently praying to God that I would do anything, give up anything if you would just get better.  I told him I’d stop being so very angry at Him.

Over the next couple of weeks it was like we had front row seats to watch God’s handiwork.  Test after test after test came back negative.  Doctors were left scratching their heads, while your dad and I prayed and rejoiced with each negative diagnosis. We would tackle and mark off one disease or illness only for the doctors to find another one to test.  Every time they explained what they were searching for on that particular blood draw I would listen with half an ear and then ask, “Can it be treated or cured?”  That was the bottom line for me.  Was there a medicine that would make it ok?  Many times the nurses would blink a couple of times and then carefully answer me either yes or no.  The “yes” ones I was ok with, while the “no” ones left me with a sick stomach.  

It didn’t matter where I was or what I was doing you were constantly on my mind and God was always right there listening to my thoughts.  I knew that God didn’t make this happen to you but he did allow it to.  I think that was what angered me so much at first.  That age old question of “if God loves us and doesn’t want us to hurt then why does he allow us to grieve and cry in anguish?”  I’ve asked myself, my pastor, my dad, and even though I know in my heart what the answer is, it’s always harder to process and accept when it’s someone you love lying there fighting for their life, especially when it’s your own child.  I was taught through you that I can either hurt with God or without Him and I’m so glad I had enough sense to choose the right answer.

You also taught me how to pray without ceasing.  I think it was the end of that first week that they decided to intubate you in order to give your heart a break and let you heal.  It was so hard seeing you like that but I knew that you needed it.  You improved slowly.  For a while you were sedated in order to keep you calm but when they decided you no longer needed the extra help breathing they excavated you and you started to wake up for brief periods of time.  The third week you were stable enough that I got to change your diaper for the first time.  Oh baby boy how my hands trembled!  It was just a diaper but to me it meant you were getting better and closer to going home.

I remember the many times that I sat in the milk bank room pumping milk for you and crying silently as I listened to the soft tunes coming from the speakers.  They had stories framed on the wall of children with various illnesses or diseases that had survived and were now thriving.  I prayed with my entire being that your story could be up there one day, that you would be a comfort to another mother one day that was clinging to her faith in God and praying that her baby would make it.  I also remember the times your big brother Owen had to come in there with me and how I had to bribe him with a new toy in order for him to stop talking or trying to change the speed on the breast pump. ;o)  

On May 8th, 6 weeks later we finally got to take you home! Oh my goodness what a day that was.  Everyone was at our house waiting to hold you, to love on you, to pray to God that you were there.  It was the best summer ever for me getting to stay at home with you and your brother.  You grew and got stronger.  Two weeks home and we got to remove your feeding tube!  I started a new job that August and you went to daycare while Owen went to kindergarten.  It was hard leaving you but we adjusted and for a while everything was perfect.  You were getting therapy each week and slowly catching up in your milestones.

But then around Thanksgiving you started these little jerks when I would feed you.  It was like it hurt for you to swallow food, so I just chalked it up to your acid reflux.  Over the next few weeks those single jerks turned into clusters and I started to worry.  You stopped smiling as much and sleeping ALL the time like a newborn again.  Then your development stopped and you became less interested in the things around you.  You would just lay there.  It bothered me when people called you the perfect baby because you never cried and hardly fussed.  Babies are supposed to move and get into things.  They’re supposed to grab for toys and babble, not stare off into space.  

Everyone I talked to told me I was worrying for nothing but I couldn’t shake the feeling that something was seriously wrong.  I started doing research and found a website that listed ALL of your symptoms, but when I read the diagnosis my heart stopped.  No, no, no.  It had to be something else.  So I researched elsewhere knowing in the back of my mind that I still needed to hold on to that other website.  

Over Christmas break I was not in a good place.  I knew in the bottom of my heart that there was something much bigger going on with you.  I ended up taking you the ER at Texas Children’s twice before a doctor would finally listen to me.  I demanded an EEG and an MRI.  They were only able to do the MRI that night, which came back normal, and the EEG was scheduled for that following Monday.  

Your daddy and I left Owen with Nana and Da and off we went to TCH for your hour long test.  You were wonderful and you even slept when they needed you to.  

When we left it would be the last time that we would walk out of a hospital not terrified of the future and what it would bring for you, for us as a family.  We had no idea that our world was going to be forever changed that next day.

We were at your Nana and Da’s when I got the phone call.  The pediatrician reading the neurologist’s report had NO IDEA what the words “Hypsarrhythmia” and “Infantile spasms” meant but I did.  That website that I told you about earlier when I was doing all of my research? You know, the one that had all of your symptoms but I was too scared to admit to myself that you might have?  Well, my fears were confirmed.  They diagnosed you with a form of childhood epilepsy that is classified in medical literature as the most “catastrophic” of all combined.

I told you earlier about how devastatingly hard it was to see your tiny body strapped in that box on the gurney during your transport to Texas Children’s, but imagine that pain amplified times ten.  I mean, I know you beat the virus that almost took you away from us, but you had already come so far and now you’re diagnosed with something that could destroy your future?  How many things was God going to allow you to go through and beat before the age of one?  I was petrified and almost numb.  I was holding you when I found out over the phone of what you had.  I slowly stood up and handed you to Nana.  The look in her eyes, I’ll never forget.  She KNEW something major had happened.  I started crying.  Not sobbing yet, just crying.  I wasn’t mentally prepared to accept the diagnosis yet, so I was still able to hold it together somewhat.  

Your dad was awesome.  He hugged me and told me to call the neurology department at TCH and ask what we needed to do.  I shook my head and said we needed to take you downtown right away, that everything I had read about Infantile Spasms said that immediate treatment was a must and the sooner the better you were treated the better outcome you would have.  On the way to Houston a nurse finally called me back.  She said it wasn’t life or death that you be treated that day, but if we wanted to we could take you to the ER who would look up your EEG results and admit us to the neurology unit.

Not life or death I asked?  Frankly I was appalled that a trained nurse on a neurology unit would say that to me, but she explained that she wasn’t able to give advice over the phone for treatment, that she could only encourage me not to wait and to seek help for you right away.

That night we didn’t get admitted until around midnight.  While waiting in the hospital’s main lobby you were smiling and laughing at people.  You hadn’t been that responsive for the past month!  I’m sure everyone thought we were just being hypochondriacs about your health, because it sure didn’t look like you needed to be in the ER.  Looking back I think God was trying to comfort me, trying to tell me that everything would be ok.  It’s like you were happy that we had finally figured things out, that you would finally be getting treatment.  

We stayed in the neurology unit for four days.  They did a repeat MRI that again came out clean and another EEG confirming you had Infantile Spasms.  A team of doctors came and discussed their approach to stopping the seizures.  We were to give you a steroid shot every day called ACTH in your leg.  If it was to be successful we would see a cessation of spasms or reduction over the next couple of days.  By the end of the second week we would either wean you off of the steroid or increase it based on how you responded.  ACTH has an 80% success rate and for many families it’s a miracle drug.  If not there are other options, but those hopeful outcomes and best case scenarios diminish with each treatment failure.  We had begun the biggest battle and waiting game of our lives.

We were, however, given some positive feedback.  They told us that since you had no underlying condition, no brain lesion, tumor, or injury sustained to your brain that would cause the IS you, in fact, had a better potential outcome.  With all the onslaught of negativity surrounding your diagnosis found on google and other various search engines it was at least encouraging to hear that bit of good news. But I was still terrified.  

I remember asking if you would ever walk on your own.

They said, “we don’t know.”

I asked if you would ever talk.

Again, they said, “we don’t know.”

I became so emotional that I started asking a million other questions involving your development…

“What about eating?  Will he ever eat on his own?  Point with his index finger?  Blow bubbles? Swim?  Do you guys know anything?!”

Once again, they calmly answered me with their standard response of “we don’t know.”

I know now that they have to say that.  That they aren’t allowed to give false hope for various ethical and legal reasons, but how do you come back from that awful news?  How do you restart your heart and have a reason to keep believing?  God knows I’ve been a believer my whole life, but this was the second time in less than a year that He was raining down a whole load of heartache on our family. When was it going to end?  Never in my life had I wanted to talk to Job so much at that point.  I needed pointers to keep my faith in tact at that moment. 

We got to go home on a Saturday and by Wednesday I was a hot mess.  You were having some of the worst spasms I had ever seen.  I thought all hope was lost.  I sobbed and rocked myself to sleep some nights envisioning having to build a wheelchair ramp for you to our house.  Would I have to get one of those huge vans to transport you?  Would you ever be able to say mama or dada? Would you even be here with us for that long? I was a wreck of emotions to say the least.

I feel guilty sometimes that I felt that way.  I feel like I wasn’t giving you the chance to fight even after you had already proven what a super hero you were surviving what you did at birth.  But I promise you will understand when you are a parent one day.  How your own life’s happiness hangs in the balance when your child is seriously sick or like you and fighting an invisible enemy inside your brain.  You feel absolutely helpless.

Over the next few weeks we increased the dosage to eliminate all of your spasms since the initial dose only diminished the amount of you were having.  By day three on the higher dose they stopped. STOPPED!  Oh baby boy I don’t think you understand the incredible, awe filled joy and relief I felt when that happened!  Praise God and all of His promises!  We called your neurologist who scheduled a 24hr VEEG to make sure the chaotic brain waves associated with your epilepsy had disappeared as well.  THAT would be the biggest test because while getting rid of the spasms was good, getting rid of the “hyps” was an absolute MUST.  Those are what could cause you the most damage if we couldn’t get them under control.

It was a Wednesday that I took you again to the hospital, this time to Children’s Hermann Memorial under a different neurologist.  You started the test that morning and it was early Thursday morning that the neurologist on call came in to tell me the results.  I was sleeping on the not so comfortable window seat, probably snoring when I turned around to a noise and found myself on an episode of House.  Not really, but he looked like that one doctor on there and for a moment in my lack of sleep induced haze I thought I was dreaming.  He had to clear his throat for me to actually sit up and realize he was real.  He introduced himself and then spoke the most amazing words ever…your EEG showed no hypsarrhythmia!  Hallelujah to God in the highest!  Most doctors wish for a lessoning of hyps, but for you to have kicked them to the curb completely was an absolute miracle.

He did, however go on to say that they caught you having a focal seizure, but that I shouldn’t worry so much because it actually was a good thing.  You see focal seizures are much easier to control and you have a far better chance of having seizure freedom on the right type of medication and at one point down the road a possible surgery to remove the part of the brain causing those seizures to happen. You’ve been on Keppra for about four weeks now and I have yet to see you have a seizure!

Oh and your development up until now?  Baby boy you amaze me with your strength and endurance. Every day you grow stronger and with PT/OT each week you are starting to sit up on your own for longer periods of time.  Your smile is back.  Your laugh is back.  Every sleepless night I spent down on my knees praying for you comes flooding back when you look at me and get excited knowing I’m about to pick you up.  You hold your bottle now when you aren’t feeling lazy.  You roll to toys and reach for the sun streaming through the window on the floor.  You are my miracle child and I thank God for you and your brother every day.  I never imagined or wanted to this new “normal” for us with your epilepsy but neither can I imagine life without you. You’re having torelearn everything and you do it with a smile on your face.  You are my ultimate super hero.  Batman, Spiderman, Superman, they all got nothing on you my sweet boy.

Love you my sweet boy,

Mom

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.