Tuesday, January 14, 2014

G-Tube

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!


Tuesday, September 24, 2013

What I have learned in 24 hours....

In the past 24 hours, I have learned a few things in my sleep deprived state:

1.  I realized that we will be in the long haul for Melorah's overnight feedings.  Right now she has a ng tube, thank goodness she is cooperative for the most part.

2. Me eating more will cause me to gain weight not Melorah.

2. Don't try to respond to a Facebook post when you are exhausted... you might leave out a word or two and accidentally insult your friend instead of compliment her.  Thank goodness she has a sense of humor!

3. Don't try to answer emails when you haven't slept, you will make mistakes.  Eye roll!

4. When trying to leave a message for a doctor and you are going through a nurse, understand that things can get misconstrued.   Sometimes things are just better face to face.

5. If medical personal don't have the answers, you can search for them.  Sometimes you can find the answer yourself.

6. Don't leave salmon out where a dog can get it... especially if you give that dog salmon treats.  Your dinner might be eaten.

7. If you think the cat is shut in the garage at 3 am, it might be wise to really search the house thoroughly before setting off the security alarm in the middle of the night.  The cat did come running when alarm went off.... from our bedroom.  LOL

Saturday, July 27, 2013

Our new "normal"...

Life with Dravet, Elher-Danlos and probably another syndrome that I refuse to mention have caused things to spiral out of control.  Melorah use to be able to out eat everyone... including John.  July 5th, she stopped eating due to pain.  No reason other than pain.  We limped along for about 2 weeks trying everything we could to get her to eat and drink.  She was having seizures every day.  Melorah was admitted to the hospital last Friday.  It should have been a straightforward admit directly to her room but she ended up seizing in the main corridor of the hospital, so once again we get admitted through trauma.  Holly (seizure alert dog in training) did alert in advance and did a great job with the trauma aspect.  We were able to come home on Monday after I learned how to insert an ng tube.  Melorah now gets about 1/2 of her calorie needs throughout the night while we continue to encourage her to eat during the day.


During all this, my last surviving grandma passed away.  She was an amazing woman who left a wonderful legacy of cooking, quilt making, investing and a love of family history.  It was an end of an era when she passed away.  We were so blessed to have her as long as we did and I am thrilled that my girls got to know three of their great-granparents.  I will never forget the weeks I spent with her growing up.  I usually stayed with each set of grandparents for 1 week each every summer.  What bliss!


This picture is about 8 years old.  Grandma and Melorah are sitting against one of the many quilts that Grandma made.  :)

Friday, July 5, 2013

Seizures, seizures go away...

We are in our new house.  LOVE it!  Melorah has had 3 ambulance runs in 2 weeks.  Things are way out of whack for her right now.  We are trying to keep our head above water and survive.  Holly is doing an awesome job with the seizures and Melorah is starting to ask for her as well as Hobo after she comes out of a seizure.

Amelia's surgery is over.  She did great and her pain was only bad for a couple days (shoot - what can  you expect when they cut your bone in half to shorten it)!  

One of Melorah's workers took several photos of her - can't believe how grown up she looks!  So very, very grateful for Melorah's caretakers.  They literally are saving my sanity these days.  :)




Thursday, May 16, 2013

Faking at Disney

The other day, I read an article about what the "Rich Mom's of Manhattan" do to bypass the long lines at Disney.  To say I was disturbed was an understatement.  Disney is our "go to" vacation spot because it is so handicap friendly.  We make sacrifices in order to go to Disney.  It is not easy.  We have to stay in a place that has a washer/dryer as Melorah has accidents... a lot.  We stay on property because it is easy for one of us to take her back if she is having a seizure.

To the these moms I would love to ask: What are you teaching your already privileged child?  A child who is PRIVILEGED not only to have wealthy parents BUT also their HEALTH.   You are instilling in your child the false right to be entitled.  Entitlement has brought the United States down and is causing it to further sink into humanities depth of helplessness.

To the handicap who are getting paid to do this: Shame on you!  If you are able to do this "job", then go out and look for a real one that will not affect innocent children.  Do you not realize that it will be harder and harder for families who have struggled with medical needs and bills to enjoy their Disney vacation because there will be more "hoops" and paperwork for us to go through.

To both the moms and the handicap: Where are your morals?  This is such a sad state of affairs.

Melorah cannot walk through Disney, she has to use her wheelchair.  Melorah cannot stand in the lines because she has dysautonomia and over heats quickly.  Overheating leads to seizures.  Seizures can lead to more brain damage or death.

Here is the link to the article: Disney article