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. 

My Scentsy Endeavor

So after 18 months, I have decided that I needed to not only do something for my family – but also for me. I once dreamed of raising my kids until school age while I leisurely finished my degree. But now the realities have changed, and the degree still remains unfinished, while my time is now spent in waiting rooms and on hold during phone calls.

The reality has also set in – my son may never attend school.

So, to fund my habit for therapy and therapy items (because all the therapists agree that I have the coolest stash) – I have decided to become a Scentsy Independent Consultant. So far only a week in and I have found a new sense of purpose that does not involve prescriptions, orders, endless appointments and the freedom to browse Amazon looking for the latest coolest ideas to fill our little room (on the cheap of course because I am still coupon savvy!) and other therapeutic ideas to increase Superman’s quality of life.

But also, Diva. Before Superman, Diva was a dancer, a soccer player and an all around social butterfly. Since he was born she had to give all of that up because of germs, finances and time. I can’t stop the germs (obviously, since week 1 of school and they are BOTH sick) and now that he’s older and we have more of a handle on things the time is easing up. But by taking on this endeavor, now I can control the finances part to be able to allow her to have something for herself as well. We as a family give so much for each other, now I am focusing on making sure everyone has something for themselves as well so we don’t all burn out.

If you would like to purchase, browse or ask any questions – please check out my Scentsy website: https://michelleestrada.scentsy.us

Or you can find me at www.facebook.com/supermanscentsymom and that is where I post the specials, featured items and other fun stuff!

Diva and Superman thank you!
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Who Do I Call?

I don’t like to complain. My view is that we were told the first week that he wouldn’t live, and if he did he would be in a vegetative state. We were told in not so many words that we should let him go. We decided to let him fight until he told us he didn’t have any fight left. So in essence, whether its reality or not, I chose this life. So who am I to complain about it, right?

But today, I want to scream. I want to scream cuss words to the high heavens, and I want to break down and cry.

We have tons of doctors.

Pediatrician, Pulmonologist, Neurologist, Endocrinologist, Nephrologist, Opthamologist, Opthamologic Surgeon, Neurosurgeon. There are more but in my present mind I can’t seem to think straight.

Here’s the thing. My kid throws up … violently. I am headed to the store to get some pedialyte because I don’t know what else to do – that is what you do for typical kids, right? I am so out of it, I could drive to the store in my sleep and I missed three turns. LONG way around, AND I almost hit someone. Because all I can think is I have ALL these doctors, but my kid throws up and can’t keep anything down… WHO DO I CALL?

It’s just throwing up right? When it comes to Superman, its never that easy. Throwing up caused him to go into full blown seizures AND can throw his DI and Addison’s into a tailspin. We managed to get all of that taken care of. My pediatrician answered his page immediately and prescribed antinausea meds over the phone with instructions to go straight to the ER if he threw up after we gave him the meds.

That was Saturday.

Come Tuesday (the Monday after the LONG holiday), I call the pediatricians office on an unrelated note, but there is NO way to know what I am calling about based on my number on the caller ID. The phone rings 25 times before I hang up. I remember this nifty little trick from circa 1990 – *67. I IMMEDIATELY dialed back the office and blocked my number and strangely they picked up on the second ring. Of course I WAS calling about the orders for therapy they have been so blatantly refusing to sign. Mind you we are THREE days from losing services. They got the orders a MONTH ago. (I hope the use of ‘shouty caps’ shows my frustration here)

So regardless of the nature of my call, my pediatricians office – who is fully AWARE of the fact that I have a VERY medically fragile child, is refusing to answer my calls, while the doctor still feels the need to return my page even on his holiday weekend. With urgency. My theory is, if I were calling with a medical emergency (my insurance requires you call the PCP before going to the Emergency Room UNLESS you are in a life threatening situation) they are denying me proper medical care. So is the doctor even aware this is happening?

I have never been anything but nice and respectful with everyone in that office.

What’s a mom to do?

WHO do I call?