Tuesday, March 21, 2017

Please Pray For Us


Do you ever have those days where you feel so overwhelmed, that you don't feel like you can even think straight?

I'm having that month, and I'm not sure where to even start explaining.

Things have been a bit chaotic in the Strong household, and I'm spending more time crying and praying that I don't completely fall apart, than I would like to admit. And I know, it's not the most graceful or attractive way to portray myself right now, but it is what it is.

I'm struggling.

As many of you know — both from my real life and from this blog — The Boy child has had some fairly significant medical issues for most of his life. If you remember from my post "On My Way To Homelessness," he was 18 months old when he was diagnosed with a severe developmental delay. He was so far behind, that in some areas of development, his skills fell only in the 3-6 month age range.

The doctor wasn't sure what was wrong, and there were several things could have been causing his problems, but there was also the possibility that they may have been the result of an injury The Boy Child had sustained at the hands of his father when he was only a few months old (right before ex disappeared). Either way, regardless of a firm diagnosis, the doctor told me that typically, when they see delays that significant across the board, they are usually "severely life impacting." He then bluntly questioned if my son was even "in there" at all.

I was crushed.

Later that night, I went into The Boy Child's room. He was sound asleep, but I pulled him from his crib and nestled him into my lap; stroking his hair and remembering the first time I'd held him, on the day that he was born.


Were all the hopes and dreams I had for him gone?

Crying, my tears splashed down onto his face and he stirred just enough to open his eyes and look at me.

"I love you," I told him. "I know that you are in there and I'm going to find you. I've wanted you since before you were born and I want you now. I want you too much to never get a chance to know you, and so mommy is going to find you."

Wherever he was, I knew he was in there. I was going to go get him, and I was going to bring him back.

Suddenly, despite my single mom status, and the fact that I was already the parent of a child with significant medical needs, The Boy Child and I were thrust into a therapy program so intense, that I nearly lost my house due to all the hours and money I was spending on his therapy.

Speech therapy, physical therapy, developmental therapy, occupational therapy, sensory therapy, behavioral therapy, aquatic therapy, and eventually nuerobiofeedback; an hour for each therapy, each one twice a week. I spent two weeks putting him through the Wilbarger Brushing Therapy protocol, which if you have any idea of what that is, you know it's no joke. I went above and beyond the gluten free diet that The Girl Child and I are on for our genetic illness, and I removed dairy, artificial colors, preservatives, salicylates, and more from what he ate.



 
I would have done anything to find my baby! I had brought him into this world, and no one, NO ONE, was going to tell me that we couldn't find him anymore.

He was in there, I just knew it. And nothing else mattered except saving my son.

When he was three years old, he started preschool with the rest of his peers; completely caught up cognitively, and showing absolutely no signs of a delay.

I had found him, and he was going to be fine.

Or so I thought.

He is five now, and things have been slipping for a while.


Over the last year and a half, he's had a few physical set backs that could all be chalked up to our genetic disorder, but cognitively, something hasn't been right. I watched him back track in ways that scared me, but being on medicaid, I was turned away by every specialist that our pediatrician thought I should take him to see; or he was put on waiting lists that were indefinitely long.

Weeks turned to months, and months turned into fear. Fear, because I could see him slipping away again, and terror, because I couldn't do anything to stop it. And aside from the fear and terror, confusion became a constant companion of mine.

Why, did he seem completely fine some days, and other days, seem to be living in a world beyond my grasp?

What was going on with my child, and why would no one help me?

I begged the doctors. I cried in their office and I pleaded for my son. But the value of my medicaid dollar wasn't enough, and each time, we were turned away.

To further complicate things, once you have been diagnosed with a rare genetic illness, it's a lot easier for the doctors to blame everything they don't want to take the time to figure out, on the one diagnosis that has the ability to explain away the un-explainable.

But I wasn't going to accept that, and I wanted answers. I knew that medically, our genetic disorder did not have the ability to affect him cognitively, and so whatever was going on with The Boy Child, was something else entirely.

When I got married and gained "real" health insurance through The Guy's job, I decided that I was going to get to the bottom of the mystery, and I began making appointments with the very same specialists who had turned The Boy Child away when we were on medicaid.

But, then, before I even had a chance to take him to those appointments, his health took a dramatic turn, and it came in ways that the doctor's could no longer ignore. Our appointments were moved up, and because he has a history of mild cardiac issues, our first stop was to the cardiologist.




But surprisingly (and thankfully), his heart checked out completely fine. In a glimmer of good news, all of his past cardiac issues seemed to have resolved completely on their own.

His heart was healthy, and I breathed a sigh of relief.

Yet the next day, a physical display of a very serious problem broke open the flood gates, and I saw in an instant, the piece of the puzzle that we had been missing.

I immediately knew.

I took a video of the event, and rushed him to the doctor. Once he saw the video, we were immediately sent to see a neurologist at the children's hospital.

A few days later — last week — The Boy Child was diagnosed with epilepsy.


Seizures in his frontal lobe have been ricocheting through his brain for quite some time now — most likely when he has been sleeping — and as the neurologist has explained to us, are most certainly the cause of all the issues that he has had over the years. They are also a solid explanation as to why his skills and cognitive abilities have been so scattered throughout his life.

My initial attempts at putting him in therapy helped to bypass some of his damaged electrical circuits just enough to get him caught up, but eventually, as he grew, so did the issue in his malfunctioning brain.

And I'm not really sure how I feel.

I'm thankful for the answer, because now I know what we are working with. There comes a bit of peace in finally solving what seemed unsolvable, and hope that he can find treatment in the diagnosis.

But, I am heart broken that since I couldn't afford "real" health insurance, it took so long to figure this out.

I fear that he may have permanent damage to his brain because of it.

I am also devastated that this could have been a direct result of his father hurting him when he was just mere months old.

There is no question that I feel guilty that his seizures had to progress to the point of him actually collapsing in front of me, physically seizing, and nearly losing his airway, for anyone to realize that all of his scattered cognitive skills, had been quieter seizures all along.

And I'm terrified because he is now seizing almost every day.

When your child gets hurt, you run for an ice pack, or a bandaid. You scoop them up and you cuddle them; letting them know you are there and doing your best to fix what is wrong.

But when your child is seizing, you are helpless. You can't crawl into their head, and you can't put a bandaid on their brain.

I can't comfort him in the ways that I'd like, because when it's happening, he doesn't even know that I am there.

But here we are, and I can't change it.

The Boy Child and I are about to embark on a series of tests, hospital visits, and procedures to try and pinpoint exactly where the seizures are coming from, why he is having them, and how we can fix this.


At this point I simply cannot fathom the work that needs to be done, the time commitment involved, and financial devastation that this is going to have on my family. I'm spending entire days at the hospital with him, we have already racked up close to $15,000 in uncovered medical bills, and The Guy and I haven't slept a full night in weeks.

I thought that I had finally reached the good life, and now suddenly here I am, right back in the trenches.

But I guess, if there is anything that I have learned from this crazy life of mine, it's that this too shall pass.

This will pass.

But for right now, I need to find my son, because he's in there, and he needs his mom. So, today I will focus on strength, and the road towards recovery.

Please pray for us, because this is a new path for me, and right now, I'm not feeling very secure in my footing.


Please pray that I can fix my baby.


31 comments:

  1. You are all absolutely in my prayers! You'll find your boy again. I have no doubt about that. Keep putting one foot in front of the other and eventually, you'll find that you're where you want to be. I hope, for your sake and your family's sake, that you reach that goal very soon. **hugs**

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  2. I'm so sorry. Absolutely praying for answers and help for his medical condition. And praying for your whole family as you deal with this. Hugs and lots of love.

    Debbie A-H

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  3. I am so sorry for this diagnoses and pray the doctors can quickly find a medication that will stop the seizures. This IS likely the cause of so many of the issues you have seen. My 5 year old granddaughter has a rare genetic illness called Tuberous Sclerosis. There are many symptoms but most have epilepsy and 60% are autistic. My granddaughter has both, started seizing at 2 months, cognitively about 2, plus many other issues. You need to stop the seizures if you can but then find a medicinal answer that does not cause too much in side effects. Try looking into a keto diet, which my daughter had success with for awhile. But it may not work for you with all the dietetic issues you have already. The more severe form of the diet calls for hospitalization to start and is pretty severe but my daughter (a pediatric nurse) instituted her own diet by researching it and doing a modified keto while consulting a dietician for help. Praying for your peace and sanity, for the rest of your family, for your doctor's for wisdom and, most importantly, for the Boy Child for healing.

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  4. Praying. It's hard to be strong when you are being crushed by fear and uncertainty .. as hard as it is to remember ,just know that God is trying hard to help you through this.. count on Him and your families love to get you to the other side of this . Most importantly , you will get to the other side of this .. YOU WILL!

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  5. Praying...no words to explain how hard. Having a son with "abnormal EEGs during migraines but not quite seizures" (whatever that means) that trigger massive migraines, I know how scary it is

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  6. No words...just NO WORDS. Praying for you and your family...and that adorable little son of yours. He is a lucky little guy - he has YOU for a mom. Praying for peace, and sleep, and healing, and learning a "new normal" and all that it entails...for you all to feel whole again.

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  7. Eden, if anyone can do this, it's definitely you! You and boy child and your whole family are in my prayers. Love and hugs to you!

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  8. Marijuana. I can't believe I came out of lurkdom to say that. 🙄
    But seriously, the oil is amazing stuff.
    Unfortunately, the worst part of epilepsy is that the brain can often figure out how to bypass medication so it has to be monitored frequently, dosages change, meds stop working. It sucks and I am so sorry. The oil seems to work better and cleaner than most meds. Worth looking into. In any case, it can and will be managed because you won't allow for anything else. In time it won't feel different than the "evil you know" which is the genetic condition you already have. Sucks to death but not a death sentence. And there will be prayers and good vibes and sincere heart-thoughts with you constantly as you get there.

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  9. So many good thoughts and vibes sweetie, I hope that adorable munchkin gets all the help he needs. My stepson has a rare form of seizures, that steal his memories for a short time or knock him out. He's 27 years old and still struggling but is able to live his life. Your boy will get through this, he has an amazing support system. Much love to you all.

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  10. Bless him, you, your daughter and The Guy, and all his carers!

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  11. Praying for your family. I know you'll do it. You are an awesome mom!

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  12. http://www.epilepsy.com/.../will-i-always-have-seizures - Article says some people respond well to treatment

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  13. many many prayers being sent to you and whole family

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  14. Prayers to ALL of you Eden! <3

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  15. Im so sorry, Eden. Praying for you all

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  16. sending soooo much love to you and your family and positive thoughts out into the universe! You will get through this because you are the toughest chick I know and you have an amazing partner by your side to help you...we are all here for you!

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  17. Sending hugs & prayers.

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  18. Praying for peace and comfort for your whole family, Eden. Hoping you can stop every now and then to take a deep breath.

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  19. Sending prayers for your entire family during this time. The boy child is so lucky to have you for a mom!

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  20. I hope you don't mind if I take this from a different angle.

    I actually think this is GREAT news! You knew for a while that something was wrong, but despite all your efforts, you didn't have any way of moving forward to address it. Now you have a specific diagnosis and that gives you a path forward to treatment. That's a huge accomplishment!

    I am sorry that it took so long to get this diagnosis-- but are you sure that it's because of Medicaid? It sounds to me like it happened because, as you say, "his health took a dramatic turn", and you happened to be on new insurance when that happened. The physical signs were so subtle to begin with that it likely had to progress to this stage before you could do anything, anyway, so you shouldn't feel guilty about it. (The reason I'm skeptical is that I used to be on Medicaid and am now on private insurance, and I actually had BETTER coverage on Medicaid than I do now! I'm sure it varies depending on the state, but I would just be hesitant to assume that you were put on waiting lists just because of Medicaid, when there were other factors anyway...) Oh-- and Medicaid IS "real insurance"! Don't ever let anyone tell you that it isn't.

    In any case, epilepsy is no joke and I do know that the constant seizures must be taking their toll on you and your family-- but, again, I think it's wonderful that you have a diagnosis and can start working on treatment!

    Hoping everything turns out well.

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    1. Agree with the medicaid part... Its really not as dramatic & awful as described in post

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    2. I think it probably depends in where you live. I'm on medicaid and my healthcare is crap. You either have to drive two hours to find someone who takes it, or get stuck on a waiting list that never seems to move. The doctors who can see me right away never speak English or are so bad they take medicaid because no privately insured person would want to see them, so it's not very helpful.

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    3. Oh and for the waiting list part, I was told by a major university hospital that medicaid patients are rolled to the bottom and private insurance patients take priority, so it is a real thing.

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    4. I fight with medicaid every single week over my sons migraines. Luckily, his neurologist just got assossiated with a teaching hospital and there is now a lady 4 doctors share that her entire job is arguing with medicaid (and sometimes other insurance, but mostly medicaid). My son has head testing done since Jan Ive been fighting for years trying to get

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    5. Medicaid will be the death of me. Goodluck finding any good doctors in a decent time frame or within hours of my reach.

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    6. The new insurance lady at the neurologist has been awsome. She got medicaid to cover a sleep study (they said 16, hes 13). Told them if him or I got hurt from me trying to carry him because he sleepwalks when hes getting a migraine, she would find us a lawyer to sue for our medical bills. He gets his on Thursday. Tonsils we have been trying to get out for 6 years are happening over Easter.

      Im beginning to think she has blackmail on someone at tbe medicaid office but Im just glad to finally have some help

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  21. I haven't been here for a while but have kept you and your little family in my prayers. I am so very sorry your sweet, precious child has and is dealing with this.
    Love you young 'un.

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  22. So many prayers and good thought going your way along with hugs for you.

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  23. i have epilepsy, i was diagnosed when i was 6... my great- grandmother had seizures and so when i was diagnosed, my parents were also in court trying to get a settlement from an injury to my leg. i think the company being sued had a doctor on the stand try saying it was genetic... but honestly it could've come from anything. i still have seizures a few time throughout the year... they leave me exhausted, sometimes for days. i'm happy you have finally found out and never giving up on the boy child! your children are lucky to have a momma to advocate for them 💖 all the best on the new adventure this will bring!!

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  24. Mama... look into the ketogenic diet to help with the seizures. I have a friend whose daughter used to have more than 20 a day as an infant and is totally seizure free now at age 8. She and her doctor are convinced that the diet played a key role in that. Sending extra prayers your way... but you got this! Xoxo

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