Rational Decisions, Emotional Decisions

Everyone makes decisions everyday of their lives. Some are rational. My gas tank is empty – I think I should get gas. There is no emotional part to that decision, except maybe when you pay at the pump. Some days I want to cry about the prices, especially when I can remember $.99/gallon. Then there are the emotional decisions. Letting a sick dog go, visiting a parent even when you haven’t had an easy go of it, spending time beside the bed of a loved one. These decisions aren’t as easily made but they aren’t as frequent either. You might make 100 rational decisions a day and only one emotional one.

Except if you are a special needs parent. Our days are filled with decisions that have to be made that can literally turn from rational to life or death in a matter of moments. You can put a child to bed who is relatively well and happy to awake to find the complete opposite the very next day. Your world completely upends almost every day. And so goes our life recently.

We had been riding the wave of luck for so long it almost felt as if the worst was over. Somedays. But alas, never is the case with a child with HIE, Cerebral Palsy and Epilepsy. Diabetes Insipidus is usually our constant worry. It is never in the back of our minds. If you think the weather is fickle, meet electrolytes. They make the weather look predictable! The constant blood tests, weighing diapers. Let me tell you, no parent ever imagines weighing and recording diaper outputs… ever. That’s something they don’t show on Pampers commercials. And everything had been going so well. Of course, that’s when things are the most likely to fall apart at a moment’s notice.

We were eating solid purees, not just eating them but ENJOYING them. We had moved to a sippy cup and had been actually discussing trying to move up in nipple size because he was sucking them so well he was collapsing the top! He was eating and drinking everything without a single issue. We were on square 40 at this point and had been moving quite rapidly!

Then it all changed. In a moment.

Well I guess it wasn’t quite a moment, but it felt like it. We have been on multiple seizure medications for a while now, controlling the seizures but never getting completely rid of them. Now the funny (its not really funny but you get it) part about infantile spasms is that even though they are less, they are still devastating. They delay development drastically. Just for an example: when he started having seizures at 6 months actual his head circumference was 33cm. Yes, that is small to begin with, he has microcephaly from the brain damage as well as one side being flat. It had been growing at a rate of 1cm every few months about. Once he began having infantile spasms at 6 months, his head just stopped growing. Stopped. Not slowed down, not gradually stopped, dead out stopped growing. At a year old, his head – still 33cm. That is smaller than typical newborn sized hats in the store. Now you can see why the hats that were donated to us from Knitting Rays of Hope are so important to us. Literally nothing fits his head except Build A Bear. Do you know how many actual warm hats they have at Build A Bear? Zero, yup you guessed it. Because why? Bears don’t actually need to keep their heads warm! However Superman does. Limited options. Good news is once we figured out a medicine regimen that helps control a lot of the seizures he did manage to grow to 35cm in 6 months. Which is where we stand now.

So all of that to say – infantile spasms. There is a front line drug out there called Sabril (vigabatrin). I had heard many success stories about it, and we decided to give it a try despite the fact it can cause vision loss. Superman is already legally blind and his vision will never improve if he is still seizing so we decided the benefits outweighed the risks – rational decision.

Now what we weren’t prepared for was the emotional decisions that would come after starting this ‘miracle drug’. And I am not being sarcastic or overzealous. Almost immediately – seizure free. We slowly tapered the drug to full dose and now we are seizure free. But what we weren’t prepared for was the unintended and unforeseen side effect. Dysphagia – or better known as ‘difficulty swallowing’. I am not going to bore you with the details so click the link if you are interested in learning more about what the symptoms of dysphagia are.

Here’s what you DO need to know about it. It’s dangerous. It can cause aspiration into your lungs. Aspiration can be deadly. Aspiration into your lungs is the equivalent of slowly drowning. Very, very slowly, and painfully drowning. It’s especially a concern in non verbal, non mobile children who typically do not show signs of pain or distress because they will not appear to be aspirating and have no way to tell you what is going on. Superman protects his airway by not breathing. Watch your child turn purple at a dinner table with your in-laws. Talk about terrifying. Although, I did my best to hold it together on the outside (I think) I was absolutely TERRIFIED.

So at this point we have to choose between rational and emotional decisions.

Rationally you need your child to stay alive, and he isn’t tolerating ng tubes as well (nasogastric tubes that go through the nose into the stomach) – so the other alternative is to return to the g-tube (tube that goes through the skin directly into the stomach). The decision is easy – rationally speaking. You will do what you need to do for your child to survive. – The other reason this is so important is because of the diabetes insipidus mentioned earlier. If he becomes dehydrated in any form his electrolytes will go out of balance and in conjunction with his seizure meds that the risk of dehydration is higher – can send him into shock – and ultimately death. And you thought the life or death part was over, right?

Emotionally – your are on square 40 now – Superman has worked so hard to get past the tubes. The last tube he had was so painful we couldn’t even hold him. He never cried at that point, except when you tried to hold him and touched his tummy. That is devastating for a parent. We busted our butts with therapies and diligence and just plain hard work and dedication to get to square 40. And here we are – immediately sent back to square 1. We didn’t pass go, we certainly didn’t collect $200 – the game of life does NOT resemble any of the fun board games by the way. My heart breaks for him. We have come so far – and now we have to go 39 squares back. And maybe it’s not really that far back, since he is still eating purees well as long as they are super thick. Maybe its only square 5. But it’s not square 40. And that makes my heart break for him.

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Special needs parents have an uncanny ability to make the most rational of decisions in the most emotional of moments. We might do it while sobbing our eyes out and might needs someone to translate the sobbing babbling. But you will know the parent is making the best decision for their child when the words come out. Who else can pour every single thing into the life of their child but look at them and know when the fight is over and let them go. Ask any parent who has signed a DNR – every emotion in their body is screaming at them and the paper might be tear-stained when they hand it back, but if it’s truly the best decision for their child, the rational decisions know no limits. It’s not something you can ever prepare for. It’s not what you dream about in the quiet moments of pregnancy. But once you are in the fight, you learn. You become stronger. You feel everyday in your heart and your brain. Each and every day comes with life altering decisions. And I wish that was an understatement. And learning to let the rational decisions come out even though your body is screaming at you, your heart is telling you to run the other way and protect your child at all cost even if that means the two of you hide in a closet forever. You learn to make the rational choices. In therapies, surgeries, and through all the rough times.

So I might do it through tears, but we are in the process of getting the surgical appointment for the replacement of the g-tube. It appears we are not quite done being a tubie. 

Cortical Vision Impairment: Free Reading Material for the Blind

I had heard about this amazing program where you could get free reading material in braille for vision impaired people. I thought, surely this can’t be right.. there is a catch right? Of course.

Either way, I decided to check it out and try it. I contacted the Braille Institute and inquired about their Special Collection for the blind. I asked if they needed me to send any reports from the doctor or any verification of legally blind diagnosis. They said no which made it much easier, even though I was at the ready to fax it over.

A few weeks later, I received a catalog and an order form to submit my choices. Now, the thing here is you get to pick which books you would like to have, but if they no longer have it you might get something else. Either way, I was still waiting for the catch. I figured this is where I would find it. Maybe pick one book free after you purchase 5 or something like that. I read over the whole catalog, showed it to Dad, he read over it and we didn’t find any catches! So I read each of the types of books. The catalog is broken into groups of books and by age group. You can pick one baby book and one older book. If you have older kids you can pick two of the older books.

There are two types of Braille in the books. Books that are completely written in Braille (they do include a printed sheet so you can read the book in print) and books that have an overlay on them with the braille. Because Superman is so young, I prefer the overlays.

So I filled out the order form, sealed it up and off it went. We sent it in WELL before the deadline which is when I assume the books are released since they do it seasonally. So we waited. And honestly I forgot about it. Then one day last week, I checked the mail and filling my mailbox was this HUGE envelope!

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Excitement ensued – it was like Christmas! I love getting amazing things in the mail that can help Superman. Now not knowing what I was going to get in there, I opened it as soon as I got inside my car. The two books I had wanted were sent!

20130708_193512_wmMy favorite by far is the Dots for Tots books (red one pictured Butterfly Kisses). I am totally in love with the sensory aspect of this book! And the cute little finger puppet didn’t hurt either! The second book The Kissing Hand is a little too big for Superman but he will grow into it eventually! It is fully in braille with the inserted story.

If you are interested in receiving Braille books for your visually impaired child you can contact the Braille Institute and inquire about the Special Collection.

HOW DO I SIGN UP FOR THE BRAILLE SPECIAL COLLECTION?

Please include the full name of the child and/or student, the child’s age, home address, telephone number and e-mail address if one is available. Please note that orders must be sent to us via U.S. mail using the attached order form in the catalog.

For more information: Call 1-800-BRAILLE and ask for Braille Publishing, or call directly to 323-906-3104, Monday through Friday 9 a.m. to 5 p.m. (PST), or email us jgarcia@brailleinstitute.org.

Now Available!  Download the Special Collection Catalog, Summer 2013

For more information, call 1-800-BRAILLE (272-4553) Monday – Friday, 9 a.m. to 4 p.m. (PST), and ask for Braille Publishing.

For more information you can visit their website (http://www.brailleinstitute.org/)to find out about other programs they provide as well as volunteer opportunities.

 

 

With a Heavy Heart

Writing this my heart is heavy. I am in a support group for other parents with children with HIE (Hypoxic Ischemic Encephalopathy) and it seems like families are having to endure the loss of a child due to complications from HIE every week. My heart is heavy for these families, for their loss.

But selfishly, it also instills fear in my heart for my own child. I thought the worst was over, when we got out of the NICU, we weathered the first year. But the thing about HIE is it always feels like you are walking a thin line – the line between progress and regression, and between life and death.

We know nothing is ever certain in this life. We learn to cherish every moment because we don’t know how many we have. That is the reality for parents with children with special needs. Its not something that we constantly think about, but its always on the back of our minds. The fear of losing.

I think this is one of the determining factors on why we decided to pursue stem cells. I feel like it could be the tipping point in the scales – turn something in our favor – for both progress and the chance of life. Repair the damage that could make the difference between life and death.

Its a scary place to be, knowing that you might lose a child to something you have no control over.

My heart is very heavy tonight for the loss of these precious children and my thoughts are with the families that are left to pick up the pieces and carry on with the memory of the babies that are gone much too soon. Please say a prayer for the HIE parents that are lost in this moment and wondering why.

 

An Amazing Gift of Warmth

I recently became acquainted with these wonderful ladies through the WordPress site when I happened upon their blog about their knitted hats.

Knitting Rays of Hope.

Now how does that not sound inspiring, plus I have a secret fascination with people that can knit because I can’t fathom the concept that makes yarn into beautiful items. Its beyond my scope of talent. I am personally lucky to be able to operate a sewing machine. That is where my creativity ends in the apparel arena.

Back to the point. I found these amazing knit hats they had done with awareness ribbons, and I asked if they were able to make green ones and purple ones. No, not boy and girl :). Green is the color for Traumatic Brain Injury (TBI) and Cerebral Palsy awareness and purple is for Epilepsy awareness. Both conditions that Superman has. Now side note on Superman: his head is super small. Like newborn small. In addition to his brain injury, when he started having seizures his head stopped growing. We are hoping now that they are under control his head will slowly begin to grow again, but either way he is left with a condition called “microcephaly”. Which in essence means small head. You might say, wow I have never noticed! – That is due to the massive amount of hair he has that is genetically fluffy. It’s highly unlikely he will EVER get a buzz cut.

So all that explained, its is VERY difficult to find hats to fit him, which is imperative since he has temperature control issues and needs to be kept warm constantly.

Knitting Rays of Hope was happy to oblige my obsession with hats that fit him and once they arrived they were more than perfectly designed – most importantly – they FIT! Just to let you know how big of a deal this is – Newborn sized hats in stores are too big. The last hat I purchased for my son at 8 months was from Build A Bear. It was a bear hat. Cute, but a bear hat.

Bear hats no more!

Now not only does Superman have TWO amazing awareness hats that are as cute as can be, they also made Diva matching hats with ribbons so she can support her brother! And much to my surprise they made the purple epilepsy hat ALL purple (two shades) and that couldn’t have been any more perfect for Diva who thinks we should paint the world purple!

You can find more information about Knitting Rays of Hope by visiting their website and you can also find them on Facebook. Feel free to drop them a line – they are really sweet ladies. And they are always accepting donations of yarn to help them send many more hats to various places such as Children’s Cancer units, NICUs, and other children in need of a smile! 

Now without further ado – the revealing of the hats!

First up the Green CP hats! I took separate pics of Superman so you could see his hat since Diva was too busy loving on him! Second up is the Purple Epilepsy ones and WOW his hat was a surprise of the best kind! Our therapists all day remarked at how adorable it was! He did three therapies in a row in it! 

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And then I wanted to throw this one in there too because SERIOUSLY HOW CUTE! 

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Occupational Therapy: Sensory Part 2 – Painted Spaghetti

So switching on and off with Project #1 we explored a little art and culture. Okay, well art at least.  Mom took to Pinterest – as usual –  and found a great idea I had been meaning to try.

Painted Spaghetti – easiest craft ever and totally age friendly – ALL age friendly!

Boil spaghetti – we used some whole wheat pasta I got for free with a coupon that had been sitting in the pantry. Whole wheat pasta holds up really well – its more dense than regular pasta.

Drain, rinse in cold water to clean off all the pasta starch. Drain well. I poured into a disposable loaf pan tin I had from a party, any dish or bowl would do.

I then covered the pasta in tempera paint. If you have a kiddo who sticks stuff in their mouth, you could use olive oil and food coloring. Or just watch them extra carefully if you do use the paint.

LOW VISION/CVI NOTE: To make this activity low vision friendly, you can use colors in the low vision sight wheel such as contrasting colors (red/yellow, black/white) – all of these colors are easier to see for kids with CVI and low vision. If you pick one color you should choose from those since they are the most easily seen, however if you know there is a certain color your child reacts well to, most certainly go with that one to get the most out of the activity.

This was Superman’s favorite – the Oobleck not so much.

Of course you can’t tell by his face that he liked it at all!

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We attemped some artwork.

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Spreading noodles around!

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Admiring the handprints Mom thinks look a bit like a horror movie poster. I think we need to work on handprints a bit more!

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Superman and Ms P taking a photo break during play!
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Honestly, I think his favorite part was really the clean up almost certain he was glad to be done touching the gooey stuff!

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Suggestion: If you are doing this with neuro-typical children, older children or those who interact more you could separate the pasta into smaller bowls and make different colors. Have the kids toss on a white piece of paper and see what interesting designs it makes! Easy art right there! 

I hope you all enjoyed our first LONG walk down Sensory Lane and will try it for yourselves! It was a lot of fun for him (maybe), Diva, Ms P, and Mom!

Occupational Therapy: Sensory Part 1 – Oobleck

Oobleck? Yeah.. it has a little to do with Dr. Seuss. That explains a lot right? Only the name though! Because it defies the laws of physics, kinda like my Superman is going to!

Well Ms. P showed up this morning, and man did I have a surprise for her! I had been whipping up all sorts of goodies for her to try out! First we did the Oobleck – or as I like to call it – goobaly goop.

20130710_080122Its weird. Its a goo, but its a solid, but its grainy feeling, but it melts into liquid. It truly defies physics! I told you!

So either way it took a few minutes to make, literally I dropped spaghetti (project #2) and it beat the spaghetti with TONS of time to spare.

I used:

3/4 cup cornstarch (corn flour if you aren’t in the US)

I started with 1 cup water, added green food coloring to it.

pour water over the cornstarch and mix until you feel the consistency become solid but movable. You will want to be able to make a ball out of it, but when you release your hand it melts away.

Gobbaly Goop done.

On to the fun part! The play! He really didn’t like it very much, but Diva and Ms P thought it was the coolest thing. Not a bad way to start the day.

Round 1:

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 Ms. P was excited to get started!

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That is NOT the face of someone who enjoys feeling that!

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Drip, Drip all over! Boys can’t play without making messes.

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 He was not very willing to put his hands back in there repeatedly. It feels… well.. weird.

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Diva got to take turns playing with the goop during therapy.

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 We managed to make a HUGE mess of the kid. But it was well worth it!

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We started switching off activities since he was getting frustrated with the Oobleck. He really wasn’t a fan of how it felt, but that’s ok because his brain went into overdrive trying NOT to touch it and that is worth it!

After some play with project #2 (coming tomorrow) we decided to return to the Oobleck (and Ms P couldn’t get over how absolutely awesome this stuff was).

Round 2:

Occupational Therapy Sensory Play Oobleck

(click the link above if the video below isn’t working)

 After all the fun, Superman took a few minutes break then had physical therapy, so I gave the bowl to Diva and sent her to the dining room table to have a ball… or melty ball… however you want to look at it!

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It take about 1 minute to make and 5 minutes to clean up (Do NOT dump down sink! I spatula put it in a ziplock and then trashed it) Warm water cleans up the mess off kids, surfaces and clothes. And its HOURS of fun and entertainment for the kids!