Moments Worth the Fight

It’s exhausting. Honestly, some days I wonder how we keep fighting. Some days I want to give up because I am frustrated and I am tired. The constant nagging of not knowing what is going on gets exhausting. But as I was pulling his meds this morning, waiting on a return call from his neurologist I thought – If I am this tired of being scared and not knowing and the constant fight, imagine how he feels.

But he’s not. He keeps going. Fighting.

And I thought of Diva, how she would feel if he quit fighting. If we all quit fighting. How when and if that day comes she will just be destroyed without ‘her baby’. Because that’s what her two year old brother is to her – she refers to him as ‘my baby’. Come here my baby. Hug me my baby. Mommy, what did you do to my baby – and don’t tell me you ate him again. (love playing hide the baby).

And then I thought about how I would feel in that moment. And the air rushed out of my chest and my eyes filled with tears. Just the thought literally sucks the air out of the room.

So every bit of fear, frustration and terror of it all is worth it for every second we get to stay here in our world. Its rough and its tough on everyone. We have a new nurse and her first day of work ended up being in a ER with us post seizure. And she just kept remarking on how much of a trooper Diva is. How at 10:30pm on a school night she was still going. She was calm, acting like a good child despite being cooped in a ER room for hours. Not a ‘normal child’ who would be climbing the walls and going stir crazy by that point (with every right!) but seemingly on her best behavior.

It’s a rough life. And its challenging and frustrating. And down right terrifying because every moment is focused on life and death. Death. It’s a staggering word on a typical basis – but in the same thought as your child, its a debilitating word.

So today, we take on the seizures again. Not knowing why or for how long this time.

But the moments are worth the fight. So we battle through the exhaustion and the fears and the frustration. Mommy puts on her big girl panties and we strive to LIVE another day.

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Here a Doctor, There a Doctor – everywhere a..

Just a quick update – I wanted to share with you all of our doctors. I will be updating throughout the rest of the month all of the current statuses with these doctors to give you a better idea of what our months look like but for now I am going to list all of our doctors and specialties and if you have any questions please comment below or message me!

 

Neurologist – for brain management and seizure monitoring

Endocrinologist – for Diabetes Insipidus, Addisons, Thyroid, all hormones and glandular issues as well as growth.

Pediatrician – the baseline of course

Pulmonologist – lungs, keeps us breathing!

Chiropractor – for alignment due to neuro-muscular issue that arise from Cerebral Palsy.

Opthamological Surgeon – performed the surgery to correct his Retinopathy of Prematurity (ROP) 

Opthamologist – eye doctor

Nephrologist – kidney doctor

Orthopedic – spinal alignment

ENT – awaiting first appointment

 

pretty sure I forgot some off the top of my head but that puts us in a good place to start the year. More to come!

 

Product of Faith – A Miracle in the Making

Yesterday, I was sitting at the bank taking care of unfortunate business and it was our nurse’s day off so I had Superman running around with me. Banks, also not his favorite place to be. But the woman and I started a conversation about none other than Superman. She asked me the one question that makes me cringe right out of my chair: So is he ever going to get better and be just fine? Please, I encourage you, if you meet a parent of a child in a wheelchair, especially if she just told you he has brain damage, please don’t use the words just fine in a sentence. It makes us cringe. But regardless, I smiled and explained that no, unless drastic measures are taken this is what his life is like. And with a smile on my face.

But the next statement is what got me thinking. He’s such a miracle. This is of course not the first time I have heard it and I have even said it myself numerous times. But it hit me yesterday that he is NOT a miracle…. yet. 

He is a product of faith.

In the first moments after that bleed, he became a small miracle. He was in the presence of doctors in a medical facility that had the capabilities to sustain his life. That day I had to put my faith in medicine and believe that we were where God needed us to be to set us on this journey. Now, of course I didn’t see it that way at all at the time. I cursed God to everyone that would listen. Including my mother-in-law who I remember saying some very horrible things to about ‘her God’. Lucky for me, after having a baby at 27 weeks from a horrible emergency cesarean you get a little leeway to be hormonal and crazy.

But since that moment, our lives have been driven by faith despite the fact that we didn’t feel that way at times. He was never supposed to live, he did. He wasn’t supposed to leave the hospital – and certainly not with the ability to breathe on his own – he did. He was supposed to be in a persistent vegetative state (I hate that word but its the only one that describes it) – but he’s not.

From that moment that he grasped my finger and told me he would fight, I had to step out in faith that things would work the way they were supposed to. We have been faced with great challenges. Not just small challenges, but life changing challenges. You have two choices in that situation – you can crumble in fear and doubt or you can look it in the eye and have faith that miracles can happen.

One of the first sermons I ever heard at our current church is that in order to experience a miracle, you have to have a problem. Miracles don’t just happen when there is nothing wrong – because in that case you don’t need a miracle. But the bigger the problem, the bigger the miracles. So we live in faith that there could be some HUGE miracles coming our way!

where-there-is-hope-there-is-faith-where-there-is-faith-miracles-quote-for-you-miracles-quotes-in-life-936x936So while we had our small miracle that he was able to survive birth, he is not a miracle yet. He is a miracle in the making – as long as we continue to live in faith that this is where he needs to be. We are stepping out in faith to see where the miracles lie. Stem cells are a product of medicine but unlike setting a bone or performing  a complex surgery – medicine stops at the injection – from that moment forward you live in faith and hope that the cells will become what your child needs them to be and that’s when the miracles start.

Despite anything that happens, Superman has brought so much into our lives: a level of compassion for others we never knew existed, and a renewal of our faith – not only in God, but in each other and others.

He has taught us the true meaning of Faith, Hope and Love.

Explaining Brain Damage to Siblings

Mom, when is he going to eat with his hands?

Mom, when is he going to crawl on the floor?

Mom, when he gets bigger and starts walking is he going to play with me?

Mom, when can he go on the swings with me?

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I am constantly trying to find ways to explain things to Diva in a way that her 6 year old mind can understand and not be completely overwhelmed by what Superman goes through. Extended hospital stays and constant doctors appointments already overwhelm what was supposed to be her typical childhood. And quite honestly, I am still overwhelmed most days. Its a lot to process for an adult. How do you explain to her that she didn’t quite get the brother she was expecting? We answer questions about him as they come up but have never really sat down and explained the ‘whole’ of the situation.

I was doing some work one night at the computer while she was eating dessert and watching Netflix – I was absolutely astounded at the in-depth explanation of the brain and what it controls. I went in to see what show she was watching and tried to start explaining some of his issues. Well, the timing must not have been right because she just wasn’t having it. But this show is a fantastic tool to use if you are trying to explain brain damaged areas to a younger school aged child that isn’t quite old enough to grasp the full blown explanation.

And the best part? Its available on YouTube in two parts! I highly suggest watching it with your child and pausing it to talk about the different parts of the brain – although its a game show type show – its incredibly informative!! And with the game show quality of the episode you can use their questions to see how much your child learned about the brain!

You can find the episodes here:

Fetch! With Ruff Ruffman part 1

Fetch! With Ruff Ruffman part 2

I hope this helps! Please post your thoughts or comments or other tools you have found in the comments!

Frustration in Food Land

I have cried a lot of tears lately. About food. Yes, seriously. Food.

I thought once we got the g-tube we would go back to eating once he felt better. But it didn’t happen. I was hoping we would ‘have the tube and not need it’ instead of more needing the tube than not.

Worrying more about weight gain, trying to stop the freight train from not only rushing down the tracks but pretty much derailing altogether. The more weight he gains the harder it is for him to breathe. Not to mention how important breathing is just by itself… if you can’t breathe you can’t eat either. So we come back to the eating thing.

Also there is a balance in nutrition. Being tube fed – typically they give you pediasure. Trying to get him to eat has been such a fight, and I am still learning how to do blended diets with very little direction. Waiting for an appt with a GI doctor.

So many tears. So much frustration feeling like I am beating my head against a wall and still not knowing what to do.

 

Then tonight, HE ATE! 4 oz of Turkey and Veg baby food, and drank 4oz of milk!

Then of course I cried a bit more because that’s what moms do 🙂

Blatant Honesty

I once again apologize for neglecting the blog. Some days its just much easier to keep up with small posts to the Facebook page. And some days are too busy to even do that. We have been kept on our toes over here between respiratory distress issues, surgeries, DI issues and etc.

I feel that I owe everyone an apology.

I have always said I am an open book, I open Q&A’s on the Facebook page at regular intervals, I answer every question that is asked of me in a timely fashion – and to the best of my ability to where it is understood by the person asking it. I even tend to over explain and continue explaining well after the original topic is concluded.

But I have not been completely honest with you all.

I can explain the medical diagnoses with precision expected in medical facilities, I can update with day to day happenings with a parent’s expertise but I have never explained the situation with the realities and the gravity of the situation being the focus. Often times I shrug it off, ignore it. Not because I am not aware of it, or I live in some fantasy land where I believe everything is going to be okay. But because I don’t tend to focus on the ‘what if’s’ and the ‘what might be’ and sometimes ‘the what really is’. I know he is non-mobile and non-verbal. Of course, its right in front of me. But most days I don’t see it until I am confronted with the reality of it.

And when I post online, I don’t focus on the negatives. Maybe its because I don’t want to appear weak or overwhelmed. People actually comment on how positive I am since his birth and how they could never do it. As far as the ‘doing it’ part – if you have to you will – the positive part is a choice.

But there is a huge reality that sits in the back of my mind that I haven’t shared with many – if any. Because if I speak it then it’s real. And no parent ever wants their fears to be real. I have two fears in my life that would leave me devastatingly crippled: fear of being homeless, and fear of losing my children. I literally lose sleep at night in fear that my daughter could be kidnapped. Think its crazy? Turn on the news. Check your Facebook page. Missing pictures pop up almost daily. Scares the ever living something outta me.

But the other part of that is losing my son. Now this one is somewhat more rational but yet less rational than the first. Because we were always told he wouldn’t live. He wasn’t supposed to make it through the first week. He wasn’t supposed to make it out of the NICU. Granted he is still here 19 months later. And for that I am grateful beyond words.

But the reality of that situation, the part that sits in my heart, the one that leaves me crying in the bathroom after everyone is asleep (yes, that’s where my tears live – not on Facebook) the ones that have me crying in my car after another long doctor’s appointment – is that at any moment my son could be gone. Of course that is true for all of us, but statistically its less likely to happen to you or me. Superman is missing 45% of his brain. A large portion that reminds his body to work. My biggest fear is I am going to turn around to kiss him or pick him up and he will just be gone. With no warning, nothing. Just gone. And sadly, its not crazy – and its not out of the realm of possibilities. I don’t post these things publicly because I don’t want to post sob stories. We don’t really have any. This is just the reality for us. Its a daily awareness, something we live with every moment of everyday. There is no dramatic illness, no traumatic incident. Just reality. He could be here one minute and gone the next.

I am sharing all of this because I want to be blatantly honest with you all of what really goes on here with us.

What would you do if you lost your child and you knew you hadn’t done everything you could to try to prevent it?

That is also a fear that cripples me, but it goes along with the other part. Like everyone else we have lived in this rough economy for the last 4 years, searching for a light in the dark. When my son was born, laying there in that isolette only days old – knowing he had a brain bleed, the only words that kept running though my head were ‘stem cells’. And I was angry. Angry at politics, lobbyist, religion, anyone and everyone that had some weigh in on why or why we shouldn’t pursue stem cells. My irrational mind screamed that there was something out there that could have helped my son. My proposal for that issue in a different post. I don’t want to stray too much tonight. Then months later, I met a group of parents with children like mine that were pursuing the same alternatives I had searched for his whole life. And I found it. I believe it was divine intervention. Right place, right time. And since then the right pieces of the puzzle have fallen into place. This treatment can not only help his brain to function but repair damaged parts. While I am not naive, I know it won’t grow back what is gone,  but it can help what’s there to start working like the parts that are missing. Its the best chance we have to help him survive. I wish I were just talking about having the chance to walk or talk or play with toys. But I am literally talking about surviving. If those parts could be repaired that make his heart beat erratically, those parts that don’t remember to tell him to breathe because they are focused on fighting his chronic congestion or a minor cold… what if.

I won’t lie, I make my way around the special needs pages on Facebook. Like many other parents, searching for kids like theirs, parents in similar situations. And through these pages I have found many fundraisers. Some are for trips to Disney, some are for Christmas gifts, some are even for Xbox 360s. And they have people falling hand over feet to help them get these wishes for their children.

I am asking you to pray – pray for it to be laid on someone’s heart to help us. Stem cells have been shown to help improve the visual cortex and improve vision. A trip to Disney would do us no good because he can’t see enough to even enjoy Mickey’s ears. Honestly, I would never ask for Christmas gifts, but what is a gift going to make a difference of if he’s not here. And he’s non mobile so he can’t even help Dad play the Xbox – but the controller vibrations seem to get a small response.

Please. Share our story. If you can help and you feel its been laid upon your heart to do so we appreciate your generosity. If you can’t, please share our story with others, we never know who God is speaking to. I have tried my best to raise the money needed by selling things, I am trying to pull things together to make things, but I have come to the conclusion that I just cannot do it all on my own.

I am asking that you pray for my son to get a life saving treatment. I don’t want to just IMPROVE his life, I want to SUSTAIN his life. Give him EVERY chance he can have.

I posted the other day that he grabbed my finger and stuck it in his mouth. I cried – because I could see the possibilities. I said to my husband – just think of how much the stem cells can do with this. And most days I feel as if its slipping away. Since we have stopped the seizures, some minor development is taking place, and I know at this point, time is of the essence. They tell you that the first years of childhood is when the brain develops the most – its even more so for those with brain damage. This is when any rewiring that is going to happen will take place.

So please share, please pray. I am not asking that anyone give until it hurts – that is reserved for God, but if you are called upon to share our story or help us – I am not asking anyone to make our day a little easier with gifts – I am asking you to help change our lives. Change Superman’s life.

Here are the current ways to donate:

http://www.gofundme.com/2yttsw

Local and National branches of Wells Fargo Bank – Account name: Living With Superman

Paypal: livingwithsuperman@satx.rr.com

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Stand Up and Advocate

Doctors don’t know everything.

There, I said it. If you would have said that to me three years ago I would have laughed at you. Surely, they spend so much time in medical school they MUST know what they are talking about, right? Well turns out – not all the time.

With my NT daughter, I am more inclined to believe in the doctors, but since having Superman I have also been more inclined to do more research to make sure I understand everything about what they are talking about. Are they wrong? Probably not, but I want to make sure.

But when it comes to special needs kids, especially I have found through Superman, most doctors don’t see rare things often. Especially often enough to know right off the bat how to treat them. Then throw in a huge mix of rare, complicated conditions. You know what I ended up with? A doctor asking me where my DNR form was. NOT my ideal treatment plan.

1. Research. Know everything you can about the conditions your child has. What the current treatments are, how they are used, what the side effects are. Know what the typical outcomes are AND the possible outcomes are. I am not saying you should become a medical genius. That’s not the point. It doesn’t matter what the kid next door is going through – you don’t have to treat them. Become an expert on what YOU treat. Your child. Sometimes that is the difference between keeping them alive.

2. Organize. When you have 12 different specialist treating 12 different disorders, there is NO way they are going to keep all of that straight. It’s not going to happen. Make sure you are the spoke at the center of the wheel. Know how each condition meshes with the other. Organize the information from each doctor in a way that you could relay it in the event of an emergency.

3. Prioritize. No that isn’t as cold as it sounds. Prioritize conditions from most severe in the event of an emergency to least severe. Obviously in an emergency situation, my son’s Cortical Vision Impairment is inconsequential. But his Addison’s and Diabetes Insipidus need to be treated IMMEDIATELY – regardless of the situation. Then treat the remaining issues. If his sodium is off or he has no cortisol, other treatments might not be effective, or the DI could kill him before the other treatments are complete. Severity is key.

4. Question. I live by the motto ‘question everything’. Not because I am trying to be a colossal ass. Because I need to know exactly what that treatment is going to do so that I can go back to the Organize part and see how it will play into the other conditions. A random attending might forget that he has epilepsy so some treatments he is unable to do. Plus this will help you KNOW what is going on so you can go back to #1 and know what you are looking for.

5. Remember that doctors don’t always know everything. In many cases they do, but they don’t know YOUR child. As a parent you know what they can tolerate, what will push them to their limits. What is acceptable and what is not. If you think something is wrong SPEAK UP. STAND UP. Superman is non-verbal so there is literally no one else to speak for him but us. Even something as simple as telling the doctor that he CANNOT tolerate continuous feeds. Long feeds over a pump, yes. Being continuously fed for 8 hours? No. He will reflux all day long. It makes him miserable. If he’s miserable, he’s stressed. Addison’s goes out of whack and he can’t fight whatever else is going on. Sometimes a small thing will make all the difference. You know the signs, looks, sounds your child makes better than any other person on the planet. You don’t have to be a medical genius to know something isn’t right and if you don’t agree then say so.

6. Discuss. I am not saying to flat out say no, end of discussion and get nasty – unless the situation calls for it. Open a dialogue. Tell the doctor, I don’t think it will work and this is why – reasons x, y, z. Now, tell me again what your plan is and if we can adjust it to reach the same goals. Why are you wanting to do your way? Doctors most of the time will appreciate the fact that you are knowledgeable and be open to discussing it with you. The plan of care is flexible and you are the primary caregiver. Remember that. And parent gut will scream louder than any medical degree most of the time. As long as you stay respectful, they will usually respect your opinions and views as well and come up with something that not only achieves their plan of care but makes you comfortable.

If Mama ain’t happy, ain’t nobody happy. (Doctors know this is true)

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At the end of the day, its your child, and your responsibility to cover their care. We as a society have been trained to believe that doctors know everything and they are above reproach and unquestionable. And that is simply not the case. Some of our best doctors I go head to head with constantly. Respectfully of course and I have the best relationships with them and they trust our judgment implicitly.

But you can’t have these conversations without doing #1. You have to KNOW what you are talking about first.