Tuesday, April 22, 2014

Trash

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

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.  :)