Who We Are, What We Do and Why

I guess I should have made this post a while ago, but with the rash of ‘fake’ pages on Facebook, as well as pages for kids that have conditions that are being exaggerated for monetary gain and sympathy, I thought I would spell it out and be clear about who we are, what this blog/facebook page is for and why we are doing it. By we, I mean me mostly. My husband knows about it, he reads it, and sometimes I ask him if he is ok with me posting certain pictures on Facebook and I will show him videos and he will tell me he doesn’t want me to post it. And that’s his right, we are a 50/50 partnership in this parenting gig.

First off, I want to assure you we are VERY REAL people. But being VERY REAL people, also means we have a VERY REAL life outside the cyberworld, and have to take steps to protect our privacy and safety as well. ESPECIALLY our children.

I will never use my husband’s name on the blog and he doesn’t typically comment on the facebook page. He reads it (I think) but being as most professional research is done online, I wouldn’t want anything that is written about our family (the good, bad or ugly) to sway any decision to offer him a job, promotion, or anything professionally.

As far as my daughter goes, you all know Superman has an older sister. She is 5 at the time of this writing, and her nickname on the blog is ‘Diva’. No, that is not her real name 🙂 – its one I made up based on her personality. Its not even a nickname we use for her in real life. However, I have almost called her it several times after she roams the house modeling her latest invisible fashion. I do not, and will not use her name for privacy issues. A) she is 5 years old. That is a HUGE safety flag for me as a mother. B) she will one day be a grown woman and like her Dad, be going off into the professional world and I would not want her family life to sway any decision for the name that she decides to make for herself. She will choose to share what she wants to when she is old enough to make that decision. I will protect her privacy fiercely. And I know those of you who know her in real life will respect that decision and not use her name anywhere online. If someone slips up I will simply remove the comment and remind them.

Also, any of our professionals pictured or discussed, I will NEVER post their names, most of the time I don’t even picture their faces. It’s not because they aren’t real – they are very real, but they also deserve the same respect of privacy. They go home to families and other lives outside of their professional ones and they deserve the same since they are not the ones posting the information.

Superman’s name has been used off and on during the course of our online world, and its in videos as well as fundraising sites. I prefer people to just refer to him as Superman, but it can’t always be avoided since things are said in the moment of sheer progress or Diva yells his name as he’s trying to crawl, or the fundraising sites ask for the beneficiaries name. I do not want to promote an air of deception thinking that our family is pocketing any donations made to Superman. It’s not the case at all.

And yes, we are doing fundraisers, to raise money for treatments that are not covered by insurance. I am in no way attempting to pocket money, and it would NEVER be used to pay our rent, buy clothes, and etc etc the other things. I will NEVER ask someone to buy my children toys, and some of the other crazy things I have read. I am a mom, my son was planned – I didn’t plan for this but who does right? We are capable of providing the things that our kids need. I would NEVER ask someone online to send my children gifts. I have posted our PO BOX on our blog and Facebook page – if someone wanted to send them cards or draw them pictures, if you have a child that is a sibling that wants to write Diva a letter – awesome – she loves mail! But I think sending toys is a bit extreme, especially since Superman doesn’t really play with a whole lot of toys and TRUST ME Diva doesn’t need anymore toys! I am still trying to get her to remember to clean up the ones she has! (see we are very real people!)

What we do: I started this blog as a reach out to other parents who are searching for something to hold on to, who have just received a diagnosis, who just had a baby born much too early, who fight the same fight we do. I do A LOT of research about our various conditions and I thought why hoard all of that information for myself. I have found great support and ideas from other parents online so I should share what I know as well. Plus I will take any chance I get to brag about my little man who wasn’t supposed to live more than a week! Look at him now!!

Conditions I have/plan to talk about on the blog and offer resources for:

Cerebral Palsy – we have hypotonic CP and when his tone does kick in it have triplegia tendencies.
IVH – Intraventricular Hemmorhage is a fancy term for babies that is pretty similar to what someone who has a massive stroke goes through – the bleeding in the brain.
HIE – Hypoxic Ischemic Encephalopathy – caused by a lack of O2
Diabetes Insipidus
Addison’s Disease – something we have had for a while that I didn’t know had a name – we just called it Adrenal Crisis – treated with Cortisol Replacement Therapy
Temperature control issues
CVI – Cortical Vision Impairment
Infantile Spasms – Epilepsy

There are more but that’s just a preview – I need more time in my day.

I am a writer, researcher, and mom. My house is a disaster area, my desk is stacked with medical paperwork, my floor is covered with Barbies and therapy toys, I have laundry and a laundry list that goes on for miles. I sit around waiting in doctor’s offices writing blog posts in my head. I assure you I am very real. My family is very real. Having a baby at 27 weeks is very real, and traumatic, and having a special needs kiddo while miraculous is not something I take lightly. I appreciate the love and support we have gotten from our page, but even if not a single person read what I wrote but a mom that was struggling with her new reality, that would be enough for me. If someone can take with them something from my writings that makes their outlook a little brighter, their day a little easier or a technique that just makes things click then that would be enough. Of course I want the whole world to love my son as much as we do because he is truly special. I believe that God has a plan for him to touch someone’s life and I don’t know if it will be in the tangible world or here in cyberworld but I believe he is going to move mountains!

So please feel free to ask me anything! His medical information will not change, it might evolve as he does but there will not be drastic changes (like with some exaggerated pages) and we really have nothing to hide – within reason – I am not passing out my home address. You know there are crazy people out there, right?

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While He Sleeps

As I lay here watching him sleep, it feels like that’s all I have done for most of his life. Which is somewhat true since he rarely opens his eyes. But with all the wires it takes me back to the NICU, where we spent 4 months watching him sleep. As I stare at him all I can think is wow. This is not the same baby, of course sometimes when he stretches his neck upward I can see the face of that 4 pound baby but overall he is so different.
So grownup.
I can see the subtle changes that 16 months have brought. His snores have gotten louder, he’s such a boy. He relaxes when he sleeps, as if nothing else can touch his moment of peace. The seizures take a break and all is right with the world. There is a bit of yellowing around his nostrils, leaving a small reminder of his daily regimen of cortisol replacement therapy. His hands are open now, a result of intensive therapy and taping techniques. His tiny chubby fingers now visible where only a balled fist once was. Tiny chubby fingers that now have a glimmering hope of holding a piece of food or a small toy or even holding him up to crawl.
Its amazing how watching someone sleep, even someone so little can show you pieces of hope. A promise. Like dreams, they show you the path you have traveled that leads to the doors you are headed towards.

Proud Preemie Parent – Or Not

For 15 months now I have struggled in the online community. There is a real camaraderie in the preemie world. Although there is a division. You have your micro preemie groups, you late-term preemie groups, your ‘preemie’ groups that are kinda in the middle, your preemies with minimal effects and preemies with lots of effects of prematurity if not some form of birth trauma. While many try to rise above it, micro parents will be jealous of the late-termers, those with lots of issues will envy those with minimal to no issues and those will secretly some days thank God they aren’t in the other groups. It’s a vicious cycle that sometimes comes with resentment and some drama. But usually we are too wrapped up in our own daily lives to willingly fight with others. Sometimes. So now that you have the lay of the land..

There is a moniker that triumphs through all preemie communities. PROUD PREEMIE PARENT (MOM/DAD/SIBLING…etc)

I hate it. Personal opinion. It makes me shudder to my core. I can tell you great places to get all the coolest Preemie Parent gear – one of my favorites is It’s A Preemie Thing – they have awesome stuff for babies(my son’s first outfit came from them), kids, parents and even nurses – and the owner is a former NICU mom! Bonus! If you are a proud preemie parent head on over and grab your gear – I have nothing but love for you!  I have bought numerous things from them, but for the life of me I just can’t buy or wear anything that says Proud Preemie Mom.

Because I am not. Never was. Never will be.

That’s not to say that I am not proud of my son. He is freaking amazing! He’s my real life superhero. But he survived. He was a preemie that wasn’t supposed to live a week. He wasn’t just a preemie, he was a micro preemie, when he was born they didn’t weigh him in pounds or kilograms – they weighed him in grams. I am not proud of this, I feel shame most days. Not of him, but the fact that he was born at 27 weeks. Because my body let him down. He was perfect and then I wasn’t. There wasn’t anything anyone could do, but it happened. So I am not a proud preemie parent, I am proud of my preemie survivor. Because that’s what he did. After a brain bleed that he wasn’t supposed to survive much less ever come off oxygen, an eye surgery before 35 weeks, a g-tube surgery at his due date, seizures, diabetes insipidus, temperature control issues… damn – he SURVIVED! He fought and he survived. I know grown adults that would have given up QUICK into that. So for that I proclaim to be a Proud Preemie Survivor. My family survived the NICU and all that comes with a micro-preemie. We are together, my marriage is intact, my daughter loves her brother without condition, we have found a way to educate people and in general have become more compassionate and sincere than we ever thought possible.

We as a family – SURVIVED.

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Superman T-Shirt Campaign

We are selling these AMAZING t-shirts that were created especially for our Superman to raise money for his medical treatments.

The thing is we need to sell at least 50 to make it a reality – so what are you waiting for? As of today there are only 9 days left to grab one for yourself before they are gone forever!

Please take a moment to share this via Facebook, Twitter, Pinterest, Email, friends, family and co-workers!

Once everyone receives their shirt – we would love for you to send us a picture of you wearing your Superhero shirt! You can email them to livingwithsuperman@satx.rr.com or upload them to our Facebook page or even tweet them to @imwithsuperman

Click here to get your very own shirt! 

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My TinySuperhero

I read. I read a lot. I read a lot of blogs. Blogs about special needs, therapy, parenting, grammar (nerdy, I know) and whatever I find on Pinterest. But in my readings, I came across a news story about a woman, a rather extraordinary woman – who didn’t start out wanting to be extraordinary. Like most great things and people in life, it just happened.

The story as I know it starts with a woman named Robyn. She had a sewing machine. She decided to make superhero capes to give to some of her family members, and eventually she ended up making one for a little girl named Brenna. Brenna felt like a true superhero while wearing it, and Robyn found a calling to make capes for many kids around the country. These aren’t just regular kids, these are true superheroes that are just missing their capes. Well NO MORE!

TinySuperheroes was born. 

(read the whole story at the link above – I super paraphrased, plus Robyn tells it WAY better)

Ok, sappy but true, I read the news story and I cried. And then I cried some more. I have a Superman, and I had been waiting and trying to find the time to make him a cape of his very own. And to think, there was a perfect stranger out there, that has perfectly healthy children of her own, taking her free time to make capes so that my child will feel good, will feel super. I cried some more. I never realized the true generosity of people until I met my Superman, and he showed me a world of ‘endless wonder’ (yes, I borrowed that from Syfy’s Warehouse 13 – again nerd alert).

So I got on Facebook, and with a simple search I found TinySuperheroes. And I left a message (it was 2 am so I really didn’t expect ANY response, and especially nothing more than a thank you.) I explained how wonderful what they are doing is, and how it touched my heart. And within minutes a reply came flying back offering to make that cape I had on my to-do list. The to-do list that often gets pushed aside by appointments and life. Yes, I cried. Even more. Thankfully my family was asleep because I laughed and I cried. But mostly, I didn’t tell anyone because I wanted to surprise them!

Then our cape arrived. One of our therapists was here when the mail came and the response was overwhelming. We still couldn’t believe that there was someone out there that would just do this, for perfect strangers. I am still baffled and when I look at it I still get misty-eyed.

We have taken our cape everywhere – it made its debut at his first March of Dimes March for Babies and most days it goes everywhere we do on the back of his wheelchair. It is almost always with him. It is something that we will always treasure.

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Find out more about TinySuperheroes through:

Website

Facebook

Find out how you can help, donate, and even nominate someone you think is a TinySuperhero!

(and in case you were wondering, yes I got misty-eyed while I wrote this, and again when I proofed it..shh! Don’t tell)

Happy Homecoming Baby!

It’s been a year.

A very long year. A very long year that went by quicker than I could ever imagine.

Last year at this very moment, we were settling into a room that we had walked past for 116 days, never knowing if we would ever see the inside of that room for ourselves. Sometimes the door was cracked open and I could see inside, but I was always afraid to look for long, as if I hadn’t quite earned the right to see what was inside. And if I stared and tried to steal the secret, we might never get to see the inside of the room. And then our day came. The night we roomed in with our son and for the first time in his life, became his watchful caregivers without the hovering of nurses, beeping of monitors or other equipment to tell us of every rhythm of his inner workings. For such a momentous day, it was not a fancy room. Actually the word “dinky” comes to mind. But after it all, it was the first place we were really allowed to be parents.

The next morning, then turned into afternoon, we waited and signed paperwork, and then almost like buying a car, he was ours. Ours to walk down the hall, and go through those mysterious double doors that had the foreboding presence of the NICU. Those doors that intimidated outsiders from entering, but held our children securely from the germs of the outside world while they grew into little people from the small alien like creatures that entered the world and began the literal fight for their lives.

Our lives, hectic before, really started that day. The first day we placed him in the car next to his sister. The first day we left that hospital hoping never to return. The first day we were ..HOME. As a complete family. No more fractured time spent away from one child or another. No more worry or fear that our children would be forever separated from one another. HOME.

I carried a baby out of that hospital. A moment that had been 117 days in the making. The moment I wished for the first time I left the hospital. I did not have balloons, or the new mother glow. It was apparent to all of those who passed that this 8 pound baby was not a new baby. We would get a few glances, but no one saw the miracle that was unfolding before their eyes. The 8 pound baby that was born 1/8th of that size, who wasn’t supposed to live a week. Who had fought for 4 months relentlessly to reach the moment he could be reunited with the sister he would cuddle with in utero.

We placed him in the car, on the side of a busy parking garage, again not the most elegant event but starting your life in a hospital never is. Diva looked at me and asked if we really got to take him home. And when I told her yes, she told me that he was the best baby brother ever. And he was HER baby. And as a mother, I look at the two of them together, and strangely – I don’t think she is wrong.

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The last year has brought joy, tears, tough decisions but mostly love. We fight hard, we cry hard, but we love hard, too. Each day presents with new challenges, and some days we even manage to make an ‘inchstone’ too. But he still fights with the same determination he had to get out of that NICU, only now he has the strength of his sister with him.

He always sleeps better when he sleeps in her bed. His temperature regulates, he doesn’t have seizures, and he smiles.

He dreams.

Diabetes Insipidus… what the? huh?

Diabetes Insipidus… huh? Let me tell you, it took me about 4 months of NICU to figure out how to even spell it – and I think I said it wrong for just as long.

So you have to monitor his blood sugar? Ummm… that was my first question too! No. That is what is called Diabetes Mellitus. Confusing right?

What is diabetes insipidus?

According to the National Institute of Health (the big dogs)  –

Diabetes insipidus (DI) is a rare disease that causes frequent urination. The large volume of urine is diluted, mostly water. To make up for lost water, a person with DI may feel the need to drink large amounts and is likely to urinate frequently, even at night, which can disrupt sleep and, on occasion, cause bedwetting. Because of the excretion of abnormally large volumes of dilute urine, people with DI may quickly become dehydrated if they do not drink enough water. Children with DI may be irritable or listless and may have fever, vomiting, or diarrhea. Milder forms of DI can be managed by drinking enough water, usually between 2 and 2.5 liters a day. DI severe enough to endanger a person’s health is rare.

We have what is called Central DI – which just means that it was caused by damage to his hypothalamus – the part that tells the pituitary glands to produce the hormone that regulates kidney function. There are several kinds of DI depending on how you got it. From the people I have met in support groups it can be caused by any number of things including brain tumors, stroke damage, accidents where head trauma occurs, and in some cases its even genetic!

Since the NIH considers it a “rare disease” I was shocked to find so many people online that deal with this on a daily basis. Some are parents of kids, some are adults and some are as old as 60 and have been dealing with it all their lives! So if that’s the case why hadn’t I EVER heard of it? Guessing that’s where the rare part comes in.

What does that mean for us? How do you treat it and manage Diabetes Insipidus?

Well I wish there was a magic little machine like those for blood sugar that could test for blood sodium, alas it could never be that easy. The most common treatment for DI is a synthetic hormone to replace the one the brain is not making or not making enough of called DDAVP or Desmopressin Acetate. I was under the impression it only came in a nasal spray, however I have learned in support groups that it can come as an injection, pill, or spray! Thank God for options!

So every so often, sometimes more often than not, we find ourselves at our Endocrinologist office. For those of you new to the glands and hormones world, they are ruled over by a person in a doctor’s coat called an Endocrinologist. Endocrine system is the body’s transport system for glands – something I so desperately wanted to forget from health class. I never did like that word, it always sounded funny. We call them Endo’s, easier to say, easier to type – done. So back to the information. We find ourselves sitting in an office, as often as needed, getting labs done. Our Endo is great, we have a standing order for labs which means anytime Mom or Dad is paranoid or something feels off we don’t have to run to the ER to get bloodwork done (do you know how many germs are in an ER? I mean SICK people go there!! I hate the ER) we can go straight to our Endo’s office and have labs drawn and he was even sweet enough to mandate they get run STAT! Everyone in that office is aware how crazy this paranoid Mama can be when it comes to DI.

Superman is a hard stick – but we have two great phlebotomists that can draw him quick and fairly painlessly. Makes life so much easier. That’s a HUGE thing in our world. Just for comparision: when he was 6 months old, we went to the ER and they literally blew EVERY vein including two in his head trying to get in IV in, finally the last one left in the side of his foot won. We had issues getting blood the rest of the six day hospital stay. Its pretty serious for us when it comes to getting stuck.

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Now here comes the part where what I think differs from the NIH. I guess in one hand they are correct about it not being life threatening, however the side effects that the disease causes can be deadly. Water toxicity is one major issue that can go severely wrong quickly. Water can’t be poisonous can it? Absolutely. When they say everything in moderation that includes water. Drinking too much water can cause your body to go into electrolyte shock, cause seizures as well as cause your brain to swell. Its like a REALLY bad water trip. In our case we have to be double careful about dehydration as well because the seizure meds he is on can cause issues if he becomes dehydrated, which when his electrolytes are off he can dehydrate quickly.

Life with Diabetes Insipidus can be quite a tightrope walk. Especially mixed with all the other conditions our Superman has. Some days it feels like a bomb just wired to go off. And some days we can forget he has it until meds.