Monday, January 26, 2015

Public Service Announcement

This post will have little to do with Melorah and a lot to do with "The Journey."   We have been sick here which leads me to have too much time on Facebook.  I wish I liked T.V. at this point.  Ha.

One thing I have noticed while laying around, doing the bare minimum, trying to get over this nasty thing that has taken over my body, is this: people post way too much about their lives on social media. Then they get mad if other people don't agree with them.  Ok. Whatever floats your boat.

However, it seems a few younger Dravet moms are almost manic in dealing with their child.  One mom has put her toddler through so many med changes/ surgical procedures and wonders why this child is not progressing.  This child sleeps all the time.  In the past 4 days, according to the mom's posting there have been several med changes plus she is looking at adding another one.  Seriously, these kids bodies need time to adjust.  I really blame this "manicness" (yes, I made up a word) on social media.  By Betsy, we will compare, compete and post.

So, to the younger Dravet moms I have these words of "wisdom":

1. Yes, Dravet is scary.  Learn to deal with it as it is not going away.

2.  Don't expect seizure freedom.  If you do happen to achieve it, relish it.  If it doesn't happen, let it go as it will drive you nuts to try to achieve it.

3.  Know that many others have gone before  you.   You can always find someone whose child is better, you can always find someone whose child is worse.

4. Social media is just that: Social. Media.  Do your own research, don't take a poll on if your child needs to start xyz medicine.  That is just stupid.  Yes, I just called you stupid (if you fall in that category). It's my blog.  :)

5. Learn from others.  You will learn more from those who have older children.  By older, I don't mean a month older, look for moms with Dravet kids out there 5, 10, 15+ years older.  Yes, those moms are out there and they have words of wisdom.

6. Just because you found an article on the internet saying there are only 600 kids diagnosed with Dravet doesn't mean that is true.  Look at the date.  In 2006 that was true because it wasn't a well known syndrome.  There are a whole lot more diagnosed today.  If you are trying to use those numbers to raise money, you are going to look stupid (yep, said it again).

7. Just because Child X has a g-tube, pulse-ox, service dog and a wheelchair does NOT mean Child Y needs the same.   Dravet is not one size fits all.  Each child is different.  Different stages have different needs.  Seriously folks, most 2 year olds do just fine in a stroller when they have Dravet.  Strollers are much for convenient than wheelchairs.  Trust me on that one...

8.  Relax.  Take a deep breath.  Turn off Facebook.  Enjoy this time with your child.  You will not get it back.

I can't leave without a  Melorah update.

She is doing well.  She did have the flu a few weeks ago and ended up in the hospital but she is back to her sassy self.

Sunday, September 21, 2014

Is She Invisible?

This weekend was a weekend of glaring contrasts.  

On Friday, Melorah got to go to The Royal Prom.  It was a prom for special needs from age 14 to 101.  (love it!)  This prom was sponsored by several churches, Chik-fil-a, GiGi's Cupcakes and many more businesses.  I was close to tears all night because I saw how well Melorah "fit in" with this group, how comfortable she was around everyone, how many people volunteered their time/ talents/ money for this event, and last but not least how much fun Melorah had attending.   The experience was humbling to say the least.  To watch the volunteers help older people with disabilities or young people who are non-verbal and non-mobile is just amazing.   It had to be outside their comfort zone but not once did I see any of the volunteers look uncomfortable.  Melorah was not invisible at the prom.  She was honored, she was seen as a human with value...which she is because everyone has value as they are God's children.  She is a daughter of the King.

 "Ms. Heather" was Melorah's escort for the night... and an answer to a prayer as she has known Melorah since she was very little. Melorah had a blast!!

On Saturday, we went to Oktoberfest... it's a tradition.  Melorah was still exhausted from the day before, so we used her wheelchair.   We try to get there fairly early as the crowd gets crazy, after all it IS Oktoberfest.  There is one thing that Melorah is obsessed with, that is anything Disney.  So, we happened upon a Disney Radio booth where they were playing Disney tunes and getting people to dance, etc.  We were so excited!!   Melorah did her best - she was trying to follow the arm movements but she just didn't have the energy to get out of her wheelchair.  It become glaring obvious that the Disney dancers didn't want see her - they made eye contact with everyone, especially the kids and the drunk guy ... they loved him.   But a teen in a wheelchair... eek!  That is uncomfortable, so they treated her as invisible.  Seriously, is it too much to ask for eye contact?  Disney use to do great with disabilities.  It seems that now they are even letting the disabled slip into invisibility.   My heart broke for Melorah.  I got a small glimpse of how she must feel at times... invisible.

It reinforces a great lesson.... as God's children everyone has worth, no one is invisible.

Friday, August 1, 2014

In a blink...

It seems like I just blinked and Amelia is all grown up (in that 18 year old special way).  In a short 3 weeks, she will be off to college.  I alternate between excitement (for her) and tears (for me).  LOL

She had her last arm surgery (we hope) this summer.  The cast was removed today.

Melorah can't wait for Amelia to go to Xavier.  She says that means Amelia's room will stay clean.  Ha!

We have yet another new addition to the family.... Simba!  Simba had a very rough and sad start to his life.  Fortunately a friend of Amelia's rescued him (and his siblings).  He came to us weighing less than 5 oz.  Amelia slept beside his crate for about a week as we were not sure if he would make it or not (some of his siblings did not make it).  He is now a very rowdy 4 lb kitten.  We don't call him a kitten because he hates cats.  Simba thinks he is a dog and acts like a dog.  He lines up with our dogs at food time, sitting like the rest of them.  He also waits to be released to go to his bowl.  Simba is also crate trained.  Apparently we have warped him a bit but we love him.

This is a photo for where Amelia works.

Simba in all his glory!

Our "dogcat"  :)

Melorah and Holly's first riverboat cruise.  

Simba also rules the dogs.  He likes to drape himself on Hobo.

Tuesday, April 22, 2014


We got a letter today.  It wasn't a fun letter.  Someone "reported" us because we put our trash out before 6 pm (gasp!).  The handful of times we put our trash out "early" (and by early I mean an hour or two early); Melorah is either in the hospital or "iffy".  What is "iffy"?  "Iffy" is she may go into a status seizure.  It means she is already having some seizures.  If she goes into a status seizure, she may not come out of it and we may not bring her home (too many of our kids with die).  Or if she comes out of it, she may be permanently damaged.  So to whoever reported us: Sorry!  Am so glad you have a perfect life and can have the luxury of making sure your trash is not put out before 6 pm.   Right now am very sorry we moved.  Arcadia was much more kind and understanding.

This is one of the ways "iffy" can look.  Right after this was taken I had to add oxygen and a pulse-ox to monitor her heart-rate and breathing.   Earlier that day she was running and playing in the yard.

UPDATE:  We had a very sweet call from our mayor after I called and ranted at the poor person who answered the phone at the city building.  Right now things have been challenging with Melorah.  It is frustrating when people keep telling you she is "off" and you feel helpless to do anything about it.  As with everything, we will work through it.  Am ditching my negative attitude and moving on.  :)

Tuesday, January 14, 2014


Melorah had her g-tube surgery this past Friday.  It went very well.  Wonderful surgeon and nurses!  She was released on Sunday as she was doing so well.  Melorah would giggle when they looked or cleaned the surgical sight - very high pain tolerance!  She is having a bit more pain now that we are home and she is having to walk further to get around.  But overall, things have gone very well!

Holly did great!  Manners were perfect in the recovery room.  Melorah is wearing headphones as we were trying to cancel out some sound for her, she wasn't dealing very well with some of the sounds in the recovery room.

Sunday, December 15, 2013

Merry Christmas!

Wishing all a very Merry Christmas season!

Someone yanked out their ng tube, so we hurried and took Christmas pictures.  
It was perfect timing!   :)

Sunday, October 27, 2013

Life Changes...

I know it is not New Years yet but looking at the past 12 months is simply amazing.
I am slightly shocked at the number of changes that have occurred.

1. Grandpa died.

2. Grandma died - no living grandparents left.  At times it seems so unreal.  

3. Puberty hit full force causing Melorah to be in the hospital 12 times... I think!  I have lost track.  Am sure the insurance has kept track - Ha!

4. Melorah started using an ng tube to keep her weight up.  

 5. We moved after 18+ years in the same house!  

6. Eleven Twelve dogs that have been associated with SAAP (a rescue group) have come thru our doors.  Not all were fosters, some Amelia babysat.  We only foster failed with one.  She went from this:

To this:

7. We now have two teenagers!  One who will be an adult in less than a week.  OH MY!