You are not alone

Being a parent of a child with special needs is hard. In fact, at times it just plain sucks. There is one bright side to all of this. Thanks to the internet I have made many new friends.  Sure friends can be a term used loosely. Most of these people I will never meet. Yet honestly, I can not imagine my life without these people.

It does not matter where a person’s support group comes from, or where they meet. All that matters is that we, as parents find one.

Let me get this out there – I know some people don’t like the term “Special needs”, but face it our kids are not normal.  they were either born with complex medical conditions or developed such.  As a result of these issues you’ll find “our” kids often suffer varying degrees of cognitive impairments.  The needs our kids have are special.  A normal child doesn’t take a shitload of medications every day, or have a closet full of medical equipment. There are not many other names out there to describe kids like ours.  So special needs it shall be.

Most of the special needs groups I am involved in are specifically related to the seizure disorders Rebecca has.  Some are for the one she had as a baby, which is Infantile Spasms.  She “outgrew” that diagnosis, and is now considered to have Lennox-Gastaut Syndrome.  I stay a member of some groups for Infantile Spasms simply to offer support to parents of children newly diagnosed, as well as staying connected with friends I’ve made.  I find a different kind of support in the group for Lennox-Gastaut.  There I am more often on the receiving end, instead of the giving end of support.  I connect with parents of older children and teenagers.  Finding out what may be in store for my child is a huge help.

Becca has had seizures since she was 2 months old.  She has always been delayed.  I’ve learned a few things over the years.  Nearly every other parent I’ve met along the way has the same fears.  The same concerns are being faced over and over again.  I chuckle every time the parent of a severely delayed 2 or 3 year old gets shocked by sudden odd behaviors.  The terrible twos (and even worse terrible three’s), does not skip a child simply because they are delayed.  The child is still emotionally that age.  (Watch out mom and dad – 4 is far worse than 2 or 3 – no one warned me!).
As parents of special needs kids we all worry every time our child isn’t eating enough.  We worry when their schedule gets off.

But chances are there is another parent out there who has been through the same thing.

That magical time of night

** I originally wrote this a year or so ago and just now publishing.  Some stuff may be out of date

One of the best things about being a parent of a specials needs child is I am able to spend many magical moments with my child, most parents do not get.
Rebecca is a snuggler. She loves to be held, cuddled, kissed. In fact, she has little to no fear of strangers, providing they are willing to cuddle her. This is a huge blessing when it comes to doctors visits. If they will hug her (and perhaps let her play with their name badge), she considers them a friend.
One of my favorite times of the day is when I go in at night to give her medications. She has already been asleep a couple hours usually. I enter her room and open the doors of her custom made special needs bed,
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Becca is fabulous about taking her medications. Usually you just get her to open her mouth and you can slip them in, and she just swallows them. She barely has to wake up. Most adults don’t even have that easy of a time taking medications.

I love to nestle up to my sleeping daughter. I get to give her kisses and hugs while she sleeps. I sing her songs, including one I made up just for her. “I love my Becca doodle babe” always gets a big smile from her. It is a time to tell her how much I love her. This is a time to let her know how beautiful she is, and for her not to let anyone ever tell her different.
I know the time will come in her life when the world will be cruel to her. People will be downright horrible to her, all because of her special needs. I want to build up her self esteem so high that no man, woman or child can every break it down. I want her to believe she is beautiful, that God made her Perfect.

I love talking to her about what she might be doing the next day. For instance, reminding her the next day is PE and she gets to see Ms. Barbara. I talk to her about being good at school, and listening to her teachers. I remind her to show them how smart she is, and do her work.
Or maybe it is a Friday night, so I get to tell her that tomorrow is the weekend and she gets to spend all day with Mommy and Daddy.

I speculate on what she might be dreaming about, or what she will dream about. Perhaps she is dreaming about running and playing on the playground at school. Maybe tonight it is about a giant pool of gummy bears.

I am blessed to just sit there beside her bed for that time. maybe 10 minutes or so each night. Just 10 minutes of nothing but Rebecca and myself. The quiet stillness of the night. A time to put my arms around her and pray for her total healing.

Baby got a new set of wheels, and a fresh new battery.

Rebecca got her new wheelchair not long ago.  It is so nice to have a new chair that fits her better.  Her new wheelchair is a Convaid Rodeo.

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I chose the Chocolate brown as the color for her fabrics.  I figure I make covers for the seat anyhow, so I wanted to go with a more neutral color.  Pink and purple are great, but this gives me freedom to decorate year round if I want!

As you can see her chair now has a tilt feature.  This is so nice, so that when we she is tired from seizures I can just lean her back.  No more napping upright.  Also, it sits fully upright, which makes it nicer for eating.

I am sure any other special needs parent can share in the joy of new equipment!  Medicaid and Insurance rules really limit families with wheelchairs.  Rebecca will have to get 3-5 years of use out of this chair before we can consider getting her a new chair.  The process to get one approved can be 6 months or more (this one went really fast, at only 4 months).
Becca is doing well overall.  She had another MRI scan a couple weeks ago.  The scans were great!   In some ways the scan helped us figure out an important clue.  Becca has developed an odd cough lately.  She coughs like something in her throat is irritating her.
Before her MRI they turned her VNS device off (since it is a magnetically activated device you MUST turn it off before entering the MRI area).  The nurse turning it off uses the programming wand to make sure the VNS is working properly.  She got some very unusual readings, including ones that the battery was nearly gone.  Lucky for Becca, we already had an appointment with the neurosurgeon that afternoon.  Surgery was scheduled to replace the unit.
I took Becca to Duke yesterday morning and she had successful surgery to replace the VNS.  It is a rather simple surgery, an incision over the old device, disconnect it from the wires that go up and around her vagus nerve, connect in new device and put it back into her chest.  Last night she was up and about, playing as if nothing had happened to her that day.  Today is a bit of a different story.  The pain medications are making her very sleepy, and when they wear off she is uncomfortable.  That means more pain meds, and more sleep.
Since her VNS was replaced we have not heard her cough once.  David and I hope this solves the problem.  The VNS has been such a huge help for her.  She originally had it placed in September 2009.  We have found it greatly reduces the intensity and duration of seizures.  This in turn has improved her quality of life.  She spends far less time having, or recovering from seizures.  This is regardless of the fact it has not reduced the actual amount of seizures she has in a day.

 

Great Bike Giveaway

Its time for the annual Friendship Circle of Michigan Great Bike Giveaway.
this contest is in its 3rd year of giving away bikes to special needs kids.
Adaptive Bikes (or rather Tricycles) are very expensive and not something most families can afford.

A bike like this would be a huge benefit for Rebecca. It would allow her a way to get her legs and body stronger.
She can walk on her own, but does not walk well. She is very unsteady.
Because of her seizures, a regular bike would never be safe for her.
Adaptive bikes offer special seats that give them more support, as well as seatbelts. Even the mechanism of how the bike works is easier for kids like Becca. If I gently push the bike the pedals turn, so she can learn how to ride (you can strap their feet to the pedal, for safety).

PLEASE consider voting for Rebecca.

https://www.friendshipcircle.org/bikes/2014/03/rebecca/

Not only voting for her, but sharing the link. Share along social media sites. Email friends and family. give us a shout out on twitter (tweet the link – my twitter name is Mom2_Becca_k)

Thank you so much! Hopefully later this month I’ll be able to do another post shouting that we won!

** Just a quick edit to add, we’ve made it past the 1st step – getting 50 nominations. Now its time to get as many votes as possible.

Medications

I set out this morning to find a specific list of seizure medications.
Sure, lists of all available medications is fairly available online. Yet I wanted a list that better linked the Generic name with the brand name. Not a list that had 100 some odd choices, but in reality there are 50, because many are the same thing. For instance the list having both Topiramate and Topamax.

Since I couldn’t find such a list easily I made my own – modifying from one of the complete lists.
This list is taken from SeizureTracker.com – so the credits go to them for the description of each medication
So without further ado – here is the file.
I hope someone else is able to find it useful. This file is shaded with the meds we have tried, are currently using, or not tried.

you will have to click the link to view the file. (it is a standard XLS file).

Seizure Medicaion complete list

The list of available meds is constantly changing. Not all of these would work for any child. Some are not good for kids at all. Most are better for certain seizure types (and are known to make others worse). So PLEASE take this list as that – just a list of the meds that are out there. Do you own research. Talk to your doctor.

I made this list so I can go to her Neurologist better armed with what options I might like to try next. I am really wanting to avoid Felbetol, simply because of the scary side effects.

save the brains

I’m sure all of my readers know that November is Epilepsy Awareness Month. (I do have readers… don’t I?)

I have written about our journey with epilepsy through this blog, as well as Caringbrigde (those entries can be found in the “about us” section). We’ve fought this demon for over 8 years now.

Becca has faced delays in development since she was an infant. At two months old she wasn’t turning her head and tracking like she should have been doing. Head control was lacking.

So many of my friends story of their child’s journey with Infantile Spasms or Lennox Gastaut detail how their child was developing normally until the seizures hit. Perhaps the child was even ahead.
Becca has never been developmentally normal much less ahead. However I have never given much thought to her regressing.

That is until today. I spent a little time looking through some old emails. The good thing about using MS Outlook to read my emails is I am able to save emails, even when our internet provider has changed over the years. I have emails dating back to January 2006.

I could see where I would talk with other families on this journey about my concerns and my joys. I could see where I would rejoice in new skills Becca had gained. I realized many of them were seen only briefly, sometimes to never be seen again. Sometimes the skills would just stay stagnate for years. Sure she was doing some cruising of furniture at 18 months. Little did I know at the time it would be years before she would actually walk on her own. That she would effectively stop crawling. So much so that if it were not for old emails or other journals I would think she never crawled.
I am shocked to see proof that she once babbled – A LOT. Now, she is quiet most of the day, making very few noises.

Rarely do I think in terms of what this horrible seizure disorder stole from her. Rather I think of what she never had. It is very sad to look back and see there have been times when she has a lot, and then it slipped away. Over and over again.
Lennox Gastaut is a horrible monster.
As she gets older I am seeing that more and more. I see what her having TWO episodes of Non-Convulsive Status Epilepticus this year have done to her.
So knowing the damage that the multiple seizures a day, every day has done to her brain I know that this November the idea of “Save the Brains” resonates even deeper with our family.

A bed all of her own

One of the hardest times of the day for a parent of a child with special needs is at night. Keeping your child safe in such a way that everyone gets a restful night sleep is a challenge.
There are many special needs beds available, and yes you can often get insurance to pay for these items.
However, David and I wanted something different for Becca. Something really special. Something that did not scream “I’m a piece of medical equipment.”
We brainstormed. We looked around a beds and realized we could adapt our own. We thought about a basic 4 poster bed. At the time that style wasn’t very popular, and it seemed for most of them the post was rounded. That would make attaching any kind of railing more difficult.
We turned our attention to bunk beds. We found one that would be perfect. the headboard and foot board were fairly solid. The best thing behind the idea of a bunk bed was if the day came when Becca no longer needed her special bed we could revert it to a regular bunk bed, or even better in the style we chose, just a twin bed.

So David got to work designing railings. We decided to go with a piece on the back that is fixed. The front of the bed has doors that open. The design is like barn doors.

*edit* If you click on some of these pictures you can better see the note I put on them explaining some things in detail *edit*

Full shot of her bed

Full shot of her bed

We put multiple latches on the bed,in an attempt to make it escape proof. In our case, Rebecca does not have very good fine motor control, and it is unlikely she intentionally unfastens the latch. However we put more than one on there to reduce the odds she would accidentally open them all.

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Latches

Latches

David took boards that would fit around the horizontal slat that is the main support for each bed. Lucky for us the frame of the bed had bolt holes already for you to attach the railings that came with the bed. We used these to attach the frame for her railings.
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I took a picture of the hinges so you could see that the bed has the 2×4 that attaches to the bed, a smaller frame built to hold the doors of the bed, and then two panels that are the doors.
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We do not have a bed in the top bunk. Becca likes to stand up on bed and this allows her to stand and play in bed. However, there is no reason why you can not. Nothing is done to the bed to affect its use as a bunk bed.

This shows the back of the bed. Still railings, but it is a solid piece.
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This picture is from when Becca first slept in her bed. At the time I had the padding I mentioned. I have since taken that down (it proved to be more trouble than it was worth the first time she got sick).

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I’ve shared many of these pictures in special needs groups many times. I often get asked for more information. Therefore I thought it was only reasonable to create a blog detailing the information so that it would be in a format that is easy to share.

To this day Becca loves her bed. It is so nice knowing she has a safe place. I am sure many of you are familiar with that point you reach some days where your child just needs a place to go to decompress. A place all their own. For a child like Becca I can’t just send her to her room. I can’t leave her unattended. Now, when she reaches that melting point I can put her in her bed, turn on her music and quietly leave the room. 9 times out of 10, she plays in there for a short time and then falls fast asleep, just what she needed to do but was to stubborn to do otherwise.
When she wakes up in the middle of the night, as she often does, she is content to play in her bed. She has many stuffed animals, and we even have the crib toy from when she was a baby. She still loves the Fisher Price Ocean Wonders Aquarium.

You can also see we’ve painted some decorations on her bed, as well as made use of those vinyl wall clings (her room is decorated with them and I took some of the extra and placed in her bed).

I hope this inspires another parent in search of the perfect bed for their precious child.