Kangaroo Connect Trial – The Setup

Ok, here it is! Video #1 – the setup and basic walkthrough of its features!

Please excuse my voice and the background noise, Superman is on his O2 concentrator and we all caught the virus he had and I have laryngitis and am still coughing a bit. Enjoy!

The Connect and Infinity are very similar in size. Below are some initial out of the box comparison pictures –

20160426_221042

 

20160426_221109

Below is a picture of the Bio Screen so that you can see what settings are available – for us Dose and Bolus are highly needed so its essential that our pump has these options!

20160426_221146

I hope the video and pictures answered some of your questions! Please post any comments or challenges in the comments section and we will do our best to test this pump to its limits!!

 

 

An Open Letter to My Son on Your Third Birthday

To my son, my hero, my love.

This is late because it took me days to sort out my emotions this year. You see some years are filled with excitement, and some years are filled with tears of the memories that come with your unplanned early birth. 27 weeks – was unexpected and terrifying. But I knew from conception that you would be a fighter. I just hoped you wouldn’t need that fighting spirit so soon.

One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.

Albert Schweitzer

We were told you would only live hours but no more than a week. We were given horrific odds. And despite everything, you would squeeze my finger to let me know you were still fighting. And here we are – at age 3. And in those three years you have showed us things beyond our wildest imaginations when we started this journey with you.

You taught us how to love with compassion – our hearts and eyes wide open. When your sister was born, I thought I knew what unconditional love was. And I do, love your sister without condition. But she makes it so easy – you tell her you love her and she smiles, returns the words and even gives hugs when the mood strikes. She can respond and also instigate these feelings of love. Love is a give and take, a dance of sorts. But you taught me what the meaning of love is when there is no typical reciprocation. We dream of the first smiles and the first kisses and those tiny moments that our babies look into our eyes and reciprocate those feelings we express. And you have not reached the point to do any of those consistently. In the last year you have made so much progress with responding, but its not the same. And that is ok. You have taught us to see love in a different way – the way that you communicate with us. And I have seen through talking to others – that its a way that you only show with us. As if we have a secret locked away from the rest of the world. And although most days it makes me look like a crazy person trying to explain it – I treasure each and every second of our stolen moments that you have just for me.

You taught us to really see people. While I was never one to single out someone who was different, I most definitely saw differences in people. But you have allowed us to see the bigger picture – showed us that its what is on the inside that matters. Someone with a disability might have more challenges but its the challenges that drive the fight in the person. People we have met through our journey so far are some of the strongest people I have ever met. And some of the most beautiful. Just like you. Your sister has a little girl in her class that happens to be in a wheelchair. And because of you, she has never once seen that little girl as a girl in a wheelchair but as a little girl in the first grade – just like her. And that is a beautiful gift of love that she will carry her whole life – seeing people for who they really are despite any other factors.

But regardless of what you have given us – I want you to know that each day of your life you are loved. Immeasurably. Some days are easy, and some days I don’t know how we will make it through – and some days I have been terrified that the end was coming. But each time, through faith and love we pull through. You are truly a miracle.

Once all struggle is grasped, miracles are possible.

Mao Zedong
I have watched you do amazing things in your short life – things that no one dreamed was possible. And I love you every moment of the good days or the bad days. I think I walk into your room and stare at you 500 times a day and tell you how beautiful you are. Even when you are drooling and snoring – you are the most beautiful person I have ever met. My love is not contingent upon your ability or lack of. Because I see you – for who you are – even though you have never spoken a single word to me and I don’t know if you ever will – I can see you. I do see you. And I love every ounce of you! All 18.3Kg of you!! (I know I said immeasurable but we do measure how much of you there is …. so… ❤ )
I never have a problem when people want to discuss your diagnoses. I have had people apologize and tell me that they know its difficult. First off, no they don’t know. But second, its not difficult. They are words on a page. They are not you. I could list off 700 diagnoses for hours and not a single one would ever make me feel any different because I look at you and I don’t see a single one. I see your heart and your drive and the love you have for all of us. So different for each of us but so complete. So while it might be easier to express affection with your sister – it will never be as simple and pure as my expression of love with you. We are forced to speak without words and love without sounds. But our hearts say it all.
I don’t know if there will be another year to look forward to. I so desperately hope I am writing you another letter this time next year. But, regardless of that fact I also want you to know – that I would change everything. I would give anything and everything if I could give you the life you deserve – where the only pain you ever experienced was scraping your knee the first time you climbed on a bike or the pain of heartbreak from your first crush. I would give it all in a second to give you a life with little pain and a lifetime of dreams for the taking.
Our dreams changed for you the moment you were born – to more immediate dreams. But nevertheless dreams. My dreams for you are more daring now – although to a bystander they look so simple: to crawl, to sit, to stand, to walk. But I dare to dream that you WILL do ALL of these amazing things and more. I have faith, my son. Faith that God has a plan and faith in YOU. I have seen your drive and your heart. I have no doubt that you are here to accomplish great things. I look forward to the rest of the journey and holding you in my arms and watching you exceed my dreams and soar!
Be faithful in small things because it is in them that your strength lies.

Mother Teresa

I love you my beautiful boy. Happy third birthday.

Love,
Mom

Current State of Affairs

Well its been quite crazy around here. If you follow the Facebook page (http://www.fb.com/livingwithsuperman) you have seen that we are currently fighting insurance on one of Superman’s medications. Right now, they are denying his Desmopressin Acetate injection (DDAVP) due to a conflicting diagnosis – hyponatremia.

Which is stupid. Let me prove my point.

Hyponatremia is a condition in which the amount of sodium (salt) in the blood is lower than normal. (MedlinePlus)

Fluid Imbalance

Your body is constantly losing water through breathing, sweating, and urinating. If you do not take in enough fluids or water, you become dehydrated.

Your body may also have a hard time excreting (getting rid of) fluids. As a result, excess fluid builds up in the body. This is called fluid overload (volume overload). This can lead to edema (excess fluid in the skin).

Many medical problems can cause fluid imbalance:

  • It is common to retain large amounts of fluid for several days after surgery (causing swelling of the body).
  • In heart failure, fluid collects in the lungs, liver, blood vessels, and body tissues because the heart does a poor job of pumping it to the kidneys, where it can be eliminated.
  • When the kidneys do not work well because of chronic kidney disease, the body cannot get rid of unneeded fluids.
  • The body may lose too much fluid due to diarrhea, vomiting, excessive blood loss, or high fever.
  • Lack of a hormone called antidiuretic hormone (ADH) can cause the kidneys to get rid of too much fluid. This results in extreme thirst and dehydration.
A fluid imbalance is often associated with imbalances of sodium (hyponatremia, hypernatremia), potassium (hypokalemia,  hyperkalemia), and other chemicals that help regulate body fluids. (MedlinePlus
What is Central Diabetes Insipidus?

Central DI

The most common form of serious DI, central DI, results from damage to the pituitary gland, which disrupts the normal storage and release of ADH. Damage to the pituitary gland can be caused by different diseases as well as by head injuries, neurosurgery, or genetic disorders. To treat the ADH deficiency that results from any kind of damage to the hypothalamus or pituitary, a synthetic hormone called desmopressin can be taken by an injection, a nasal spray, or a pill. While taking desmopressin, a person should drink fluids only when thirsty and not at other times. The drug prevents water excretion, and water can build up now that the kidneys are making less urine and are less responsive to changes in body fluids. (NKUDIC)

All of this information and more was found in less than 5 minutes on Google. – From REPUTABLE medical sites. So why they can’t use Google to find out that this is the only treatment available I have no idea. The doctor says so – the NIH says so… 

They got a conflicting diagnosis of hyponatremia from a hospital stay where Superman was hospitalized with life-threatening pneumonia caused by metapneumovirus – which caused him to be very ill – and in that 9 days his fluid balance was affected by MANY factors including the fact that he was very, very ill. And his endocrinologist was there twice a day with phone calls every six hours with lab reports to adjust meds as needed while he combated the respiratory virus which caused high fevers, hypothermic temperatures, sweating and vomiting and diarrhea – all of which affect fluid balance (as referenced above). All they see is black and white print from a 9 day hospital stay summarized into a few sentences.

Without this medication – his DI is severe enough because of the brain injury that without it he will literally excrete every drop of fluid in his body without regulation.

Essentially, his body would dehydrate itself.

You don’t come back from that.

They don’t seem to understand that.

Its incredibly frustrating these current state of affairs.

Please keep us in your prayers.

To read more about our Diabetes Insipidus – click here

Back in the Groove

It has been a long summer. Moving, getting set up, settling in – general craziness. We STILL aren’t unpacked fully and the holidays are upon us. I am going to be leaving my blog open on my desktop (much to the dismay of my IT inclined husband because my 50 windows open slows the network considerably). Hopefully this will make it easier to stop updating you all in my head and actually get it down on paper (so to say).

Back up and Running

WE ARE BACK! After a short delay and a turn over with some techy stuff – switched back to a free version of blogging but kept the pretty domain – so we are still incredibly easy to find! Hopefully with the WordPress tools we will be able to extend our reach again and show back up for all of those who were attached to the WP version that somehow didn’t transition over to the paid domain…. all of that to say…

 

Were-back-608x300

Monday, Monday

Well Monday was rather productive I guess. Not in the way I anticipated. Dropped Diva off at school and headed to an appointment for Superman that I had extremely high hopes for. I am guessing the first event of the morning should have been a clue.

I was headed to the Medical Center and in the middle of a very busy rush hour intersection was a kitten. Gorgeous little thing and terrified sitting in the middle of traffic. Had I not had Superman in the car with me I would have jumped out and tried to save the little thing, but instead I was one car back at the light and watched to my horror at the kitten jumping into the undercarriage of the van that stopped to try to save it. For five minutes (an eternity in rush hour traffic at a light) I sat there powerless to help because leaving the car put Superman at higher risk (people in San Antonio cannot drive and rush hour makes people crazy). So needless to say the kitten didn’t survive the ordeal – and I missed my window to get free coffee at Valero.

Showed up at the appointment. We have been fighting an uphill battle with a pressure ulcer on his foot since February that he got sleeping one night. The drama of low calorie diets and non mobility is staggering. So an appointment at a would care center where they practice HBOT or Hyperbaric Oxygen Treatment would help us on so many fronts. HBOT helps heal skin but also helps in brain development. Its been shown to make progress in many people with brain injuries. Best part? Insurance will cover it for wound care. Score two for Team Superman!

Throw a flag on that play (yes I realize there were too many conflicting sports references.. its 3am.. I digress). We get evaluated and I am almost certain the doctor thought I was nuts. However the clinic only treats open wounds and his is still a stage 1 closed wound so no dice. Which I guess is fine because if it were to open up we would be so beyond screwed – his ability to heal his skin is pretty much non-existent at this point. But we got prescriptions galore. The funniest part was however that he told us to wrap it in gauze and cover it with zinc oxide – which is the first treatment we tried courtesy of an amazing nurse who went out of her way to find out what we should to until the doctor could call us back. Then the pediatrician prescribed a Rx ointment Regranex – eh.. not impressed. So what did the wound care doctor say? Zinc and a bunny boot (yes, I will absolutely be making him a bunny tail once I can track down this boot!). The rub on this is that the bunny boots are almost impossible to find in pediatric sizes. Probably impossible to find in toddler sizes, but alas my work is cut out for me!

Anyway we got a referral to a pediatric rehab clinic downstairs that works intensively with quadriplegic and paraplegic patients so they will definitely have the resources we need – and their first available appointment is October 2014. Yeah, that’s what I said!

Got home late and threw his meds all off by an hour – because that’s how that goes most days. But either way he seemed pretty happy most of the day.

Got a list from SPIO (through my awesome OT) of vendors across Texas that bill insurance for SPIO suits. I think SPIO wants their demo suit back so I need to work faster to get it approved or find funding.

Spent the rest of the day not feeling well – feel free to post any natural ways to lower blood pressure in the comments below – but was all better when Diva brought me a box of Little Debbie Brownies! That girl knows how to make me smile!

Dad made dinner for us and Diva shared her purple pillow with Superman (more on that later) and he cracked the BIGGEST smile when Dad wrapped his little arms around it! He totally adores that sister of his. She really is the one that makes him smile.

So glad Monday is over! Bring on Tuesday and let the good times roll!

1372093

A Letter To The Boy At The Grocery Store

Hello. I came and got in line behind you today. I am not sure why you were there, most likely shopping for the game. You didn’t really notice me, but I noticed you. You were there with your mom, maybe picking up a few things getting ready to watch the game like everyone else. There wasn’t enough room on the end of the conveyor to place my items on the belt yet so it gave me an unexpected chance to witness the end of your conversation.

BELT

I don’t know how the conversation started, I assume it was surrounding the word ‘retard’ or some form of it, but the end of it is what disturbed me the most. You were hitting your bent hands against your chest and you made the comment with a distorted face and a distorted voice saying “because I am so stupid”. It was enough to shake me to my core. You mother was looking up at you beaming with pride, smiling at your story. And it made me a little sad for you. Sad because you looked to be about 14 years old, definitely not more than 16 – still so young and impressionable. Your mom kinda laughed and you embraced in a side hug which tells me that you are likely not affected by any one having a disability. I desperately wanted to say something to you, but I held my tongue. I was simply dumbfounded in that moment and sad for you.

There was no way to know anything about me. I was not wearing a CP Proud mom shirt, I don’t have a tattoo of a green ribbon or a 3E keychain. There is no way you could have known that the bags under my eyes were from a long night with my son who has Cerebral Palsy and the other many issues that come along with it. That my rush to the grocery store between church and the Spurs game was because I spent the last week taking care of my son who ended up spending the day in the ER yesterday for still unknown issues and has spent the better part of two days crying in pain. Honestly, I was just glad that I was too busy running to be able to take my wheelchair bound two year old son or his adoring big sister with me. I know that one day they will both face these attitudes, but I would like to keep them innocent for a little longer.

10153794_10151982187151949_8373014142014282187_n

My son is two years old. Its likely he might not reach your age, and if he does I will never have a moment of standing with him in a grocery store line talking about our day. You see my son was born early – through no fault of his own he is cannot walk and cannot talk. But I hope that if the roles were reversed I would have instilled in him by your age that we respect life and all people despite their circumstances and embracing our differences. It’s not about tolerance. It’s about acceptance and celebrating life no matter the manner in which it is presented.

So I am simply asking, when in public please be a little more judicial with your attitudes and actions because you never know when the person standing behind you might be affected by the thing you are making fun of.

Peace and Love,

Mom of a Superman

10273499_10151982187026949_2251867610541967510_n

PS: that action you were imitating is typically significant in making fun of people with Cerebral Palsy and Down Syndrome. Despite physical awkwardness that comes with the condition, many of them are quite intelligent! I would highly suggest finding one and talking to them. While it might be uncomfortable at first since it will be a new experience, I know you will find that like all people they have a story – they have dreams and aspirations, likes and dislikes – but more than that they have thoughts and ideas. There is a world out there that these kids live in that is amazing and extraordinary. They fight for everything – every step, every word and sometimes every breath. They truly hold more bravery in themselves than any captain of a football team, head cheerleader or mathlete around. Expand your horizons and open your heart.

For Dave

PSS: Even if you said the ‘r’ word and I didn’t hear it – its not ok. Please think before you speak!

#spreadthewordtoendtheword