Saturday, August 27, 2011

Adjustments

Have you ever been in a conference or class where the speaker tells you to close your eyes and imagine something?  It is a common imagery and relaxation tool.   For a moment we are going to imagine that we are in the 'studio' of an 1800's seamstress.  We are here for adjustments and alterations.  What do you see? 

Pins, Scissors, scraps of fabric, and painful hours of standing perfectly still to avoid being pricked or cut.  When it is all said and done you leave with a fabulous new design.  Something that is beautiful, custom made, and fits you perfectly.  You love it, you feel great in it, and you know just the way to carry yourself to make it look the best.

Back to modern day and that is exactly what life has felt like.  We have transitioned from summer and last years homeschool to three in public school, one toddler at home learning all that he can, and one 7 year old that is homeschooling but also going to PT, OT, Speech weekly.  We also rotate every other week with her pediatrician and neurology office (although we are currently without a neuro).  Lastly, two girls are in Girl Scouts, one boy is in boy scouts, and all five are in dance thanks to a very awesome dance studio that is committed to God, Family, and Special Needs kids too! 

All of this is amazing, and very exhausting!  Sometimes it feels like we are being poked with pins and sometimes it feels like we are looking in the mirror, thankfully seeing awesomeness!

In the midst of all of the life activity changes we have also added a third AED (anti-epileptic drug).  This is not something that I am excited about.  The more AED's the higher the risk of SUDEP and the more drugs and side effects that are in my baby girl.  However, a week ago she had a status seizure again and we absolutely do not want those to happen! 

This week our beloved Neurologist, who is the best doctor ever :), is leaving the state and heading to Texas to be closer to his family.  To replace him, we have a new doctor in OKC, who is a leading doctor for Lennox-Gastaut Syndrome.  He is awaiting approval from both Tricare and Blue Cross and Blue Shield and we should be able to see him in the next two weeks.  Please keep us in your prayers.  We are really going to miss Dr. Khoury.  He gave us our daughter back and I will forever trust and admire him!

Sunday, July 10, 2011

"Daddy, I want to date mommy"

The day I got back from the three weeks that Avagrace/Avacake/Gracie :) and I spent together in the hospital I had four body guards following us around constantly. No joke, when I went to the "potty" in the bathroom in our master bedroom I had kiddos waiting for me on my bed and talking through the door! It was then that I decided that I would take each kid on my upcoming errands (grocery shopping or whatever!) one at a time, when Bren got home from work each night. It would be our "date." I would budget to get the kiddos a special drink (soda/milk/tea/juice because at home it is water all the time) and we would talk and 'catch up'. It was rather brilliant, but so DUH at the same time. I had gotten so use to going alone since I always had so many babies, potty trainers, etc. I never wanted to have my errands take 2 hours for a 30 minute trip due to a thousand potty trips. Now that they are a little bit older and I only have one in diapers who is potty training, I have grown to LOVE these little moments!

Today was Liam's first trip. He is very much a daddy's boy and loves to follow him around the house. So he never really showed an interest in going before. Not to mention my above weakness in patience with potty training. So, this morning I told Liam if he was really good and made a happy bowl at lunch (we had salad and he hates to have to chew so much) that he could go on a date with me. Daddy was helping him eat and he said "I make happy plate daddy so I can go, I want to Date Mommy" we all laughed and were cheering him on. So he continued to remind everyone for the rest of the meal, after every bite, that he was dating mommy today!

It was just grocery shopping but it was a grand event. He got a special drink, and even asked to use the potty. As you can probably imagine this would normally frustrate me but since he has NEVER asked to use the potty before, I was all over it with excitement. We turned the chart into a race car and Liam did sound effects and all to get to the potty on time.

It was a false alarm, actually three of them, but hey it was worth it!!

I highly encourage all to date your children if at all and when at all possible!!!

Wednesday, June 8, 2011

Aidan's Birthday

June is a month of celebrations for our family. To kick it off we celebrate our anniversary on June 4. Then Avagrace celebrates her birthday on June 17th and Aidan celebrates his on June 26th. In case you do not know, I LOVE event planning! I am so excited that Avagrace is having a "sewing" party with a Lalaloopsy theme. It is so easy to plan a girl party and in the past it had always been easy to plan Aidan's as well. However, this year he wants a "boyscouts and Beyblade party!" What am I going to do with that? Does anyone have any ideas?

Monday, June 6, 2011

JOY BEHAR

One evening in the heat for a little girl, six years old, experiencing a summer time family outing and she experiences 18 seizures dusk till mid morning the following morning.  I am sure that Avagrace would have rather dressed up and been in a loved ones wedding, shoot she would have been in a strangers wedding to avoid even one seizure!

Joy Behar, you owe the Epilepsy community an apology.  ABC you owe the epilepsy community some awareness commercials and an episode on THE VIEW the be nothing but epilepsy awareness.  Highlight what Epilepsy is, what it isn't, what can be done, and how serious it is.  Joy Behar needs to know the facts. I am sure just one of her paychecks would do a world of good for research, awareness and working towards eliminating the stigma associated with Epilepsy.

A facebook page is available for you to share your stories of epilepsy or to give Ms. Behar some facts about Epilepsy.  it is called HELP TO EDUCATE JOY BEHAR Or www.facebook.com/educatejoybehar

A sixteen year old in Germany created a facebook invite to her sweet 16.  She forgot to make it private and 15,000 people responded that they were coming!  IF that A SWEET 16 can go viral, how much more can we do about EPILEPSY and JOY BEHAR????

Epilepsy claims the same number of lives each year as does Breast Cancer.  You don't think she would have said "I would rather fake breast cancer"  Or "Rather fact Autism" Or "Rather fake AIDS"  etc etc....NO she wouldn't, and why?  Awareness has been raised for those causes.  Yet more people are affected by Epilepsy than all of the conditions/illnesses I just mentioned.

To Joy Behar:  Will you respond to this page?  Will you comment on THE VIEW about what you have said?  WILL YOU ACCEPT the fact that you have A LOT of learning to do?  WILL YOU HELP US to raise awareness by turning your error into good?  ABC  will you join the epilepsy community in helping change the future of millions?    Reader will you "like" the facebook page or comment here and share the link so that this horrendous comment will be transformed into a blessing for millions of people young and old?

Thursday, June 2, 2011

Dear Murphy, as in creator of that blasted law!

I thought you had moved on.  I thought you had gotten the memo that I want nothing to do with you.  It is bad enough that I have the big blunders I no longer need all of this little stuff....because let's face it, the little stuff is what really gets us.  We can trip over a speed bump and jump up and shake it off, but when we step on a thorn we are limping for days!

I seriously do not know what I was smoking last night (I know really REALLY bad expression) to think it would be good for me to take my kids to "Samantha's" with me.  Kids, Budget, and Bulk-Super-Store on a very busy Thursday afternoon (WHY WAS IT SO BUSY TODAY?)  do not mix, wait let's repeat that DO NOT MIX!

This morning, we woke up, had breakfast, had Liam escape into the front yard 2 times, and looked for my cell phone for 32 minutes only to discover Liam had put it under the dining table under a blanket....

Not only did I fail to realize before entering the store that they are unlike BJ's (my favorite favorite East Coast Bulk Store) they do not accept COUPONS!!!  So I had to scratch a few items off of the list and add another shopping trip to my to-do's....

Then as we begin shopping I realize "crap I forgot Gracie's seizure helmet" and I say it out loud so Liam being that cute little stinker that he is starts singing "Crap crap crap, mama forgot hell mitt....Crap Crap Crap mama forgot Hell"... and finally it ends up "crap crap crap mama hell"....for all the world to hear!  And we have only been there for three minutes, I am doing great!

So we get to the paper plate aisle.  We normally do not shop for paper products, other than TP.  I use cloth napkins, paper towels, etc. to save money and resources.  But it is a birthday month and they will come in handy.  So I am evaluating prices and I hear Violet yell "Oh no look at Breya and Liam" and from the cart they have reached into a display and taken apart several boxes of plastic "paper" plates that are pretty colors.  Now on my defense I will say that to open said boxes all you had to do was hold the plate, not the box and Voila!  So I fix the plates and move on.

Then I run into a very lovely lady whom my family and I met on our retreat at the end of March.  She brings a wonderful calming and loving atmosphere to our trip and I thank God for that angel!  Then I round a corner to and come face to face with "my arch Nemesis"  Just joking, I don't have one but that sounded very fitting.  However, now she could be lol.  I run into "lady I will not name" who says Oh dear you have Avagrace out without a helmet, I thought she HAAAD  to have one at all times" she says with a very sly and sarcastic manor."  This inspires Liam to start his wonderful song again and she looks at him and says "my my, what IS he singing"  so my three little ladies chime in the words and I sigh and say "just hand me my award now, as I force a huge smile and move on without saying goodbye."

By this time we have made it to the samples and my kids are happy again.  I grab a few things that we need and move on as fast as I can with my mondo load that has Liam and Breya in the front (I LOVE those double seat carts that do not have huge plastic vehicles in the front) and Gracie surrounded by boxes so she will not seize and hit the concrete floor.  We get to the "butta" section as Liam starts singing a new song that sounds like profanity and the kids see cheesecake samples.  I tell them to be patient as I grab some items and just as we pull up to the cheese cake table the lady puts up her sign and shoves the remaining samples into her box and just about skips away saying "sorry I really need a break, and that is a lot of kids."  UM YA THINK????  The tears start and the stares from onlookers are burning through my flesh.  Liam and Breya start fighting because they are mad and Liam pulls Breya's hair, she screams her blood curdling scream and smacks Liam right in the face so he screams too.  I grab both of them and drop my calculator which zeros out our total...that I cannot for the life of me remember now.

I start singing the wheels on the bus verse with mommies and say "the mommies on the bus say sh sh sh.."  it doesn't work so I try "the mommies on the bus say apples are purple." and my kids start arguing with me, with no tears.

We get to the apple section and Breya grabs a bag of apples from halfway down the stack because after all that is right at her level (she is walking now so Liam will not yank her hair again) and says "see they're not purple" but before she can finish purple about 2 dozen bags fall from the shelf.  She looks terrified and I start sweating.  "well guys lets clean this up,"  "Yeah lets keen up"  Liam says as he dives onto me and out of the cart.  At least I am now a good catch.  Gracie looks at the bags and says "at least they are in bags, if she did that to a stack of real apples they would have rolled everywhere"  Laughter follows!  Phew, their mood swings are giving me whip lash.  No wonder I am always so tired.

We get to the last section, bread and nuts, when BreyaBreya cries, and I cry...ok maybe not yet....  Finally a mom with one girl who is about five years old comes out and smiles sheepishly.  I bite my tongue and hold the door so I can keep Liam in our cart full of food without taking unpaid merchandise into the restroom and still watch the three girls.  When we are done there I realize that I forgot the dish washing soap and we head to the far side of the store.

We are nearly there and Breya darts in front of an old man in a power chair who slams on both the breaks and a horn (REALLY???  A HORN????  ON A POWER CHAIR???)  Breya stops dead in her tracks like a dear in the headlights and he ends up tapping her leg.  He starts yelling and cursing to keep control of my BLEEP kids and to get a BLEEPING leash and if he were their dad he would take his BEEP BEEP belt off right now and really teach that brat a lesson.  "Excuse me sir.  She is three and did not see you coming.  There was no red light.  She is not a brat, please keep your names to yourself."  He looks at me shocked and says "well I never"  and I think "well maybe you should" and he moves on.  The tears die down, we get the soap and go to check out.  Just as we ring our $308 total when I thought I was going to spend $250...the register does something weird and she says that the receipt didn't print because I wasn't charged.  She has to call a manager because she is afraid that she will have to re-ring everything.  The manager comes over and says that my order was forced into suspend, which means it is on hold for payment.  She brings it up and runs my card through.  My card is denied.  I say, something must not be right, it must have already paid for it, that is the only thing I can see.  The manager fiddles around and says, no this order was not paid for you will have to call your bank.  So she suspends my order again, the line behind me is huffing and shifting their weight all while glaring at me again.  Breya and Gracie are fighting about who is sitting next to Violet on the dirty floor and they keep getting in every body's way even though they are sitting off to the side.

I step away from the register and use my nearly dead cell phone to call the bank who confirms that in fact I already paid for my groceries.  The manager comes back over, talks to the bank lady.  Shuts down the line so even the people who already have their food on the conveyor belt have to take it off and go to the end of another really long line.  The manager does stuff on the computer.  Closes out the drawer, and finally says, oh yeah here it is, and prints me a receipt.

Finally my very hungry kids and I go to the snack bar, and wait for our pizza to be ready, because naturally they are all out of cheese pizza in the ready made hot case.  We eat, Liam spills my drink, Breya drops her pizza crust, Gracie has a seizure, Violet falls off of her seat and cries, and as we are cleaning up to go I collect the four pizza slices that are yet to be eaten and put them on a plate for them to eat when we get home because I was so completely ever so ready to go home!  I ask Violet to throw the trash away but not the left overs because we would eat them at home.  She says ok and as I get everyone situated I turn to get the left overs when I see Violet next to the Nasty and taller than her trash can, both arms in up to her shoulders, watching as she drops the plate of left overs into the trash.  I yell "Violet No, that is our leftovers" before she lets go completely but she is so startled the dirties trash can lid ever pinches her arm, smacks he in the face and knocks our food into the trash.  "That is disgusting Violet, first you don't stick your arms into a trash can, gross!  Second that was the pizza we were taking home."

We had an audience of stares again.  I grab my receipt and head to the car with my kids in tow.

As I am walking back to our car we pass several open parking spaces and get to ours, strategically parked in the back of the lot right next to a cart return.  I go to push our cart next to the car in an open spot and an older man in a vintage sporty Volvo sticks his head out of the window and says "could you move I want to park here."  HERE, not in any of the other 20 parking spots around us.  Not the one right next to where I am standing or even on the other side of the cart return....right here.....I move.

I get the three girls into the car, they are buckled and calm.  I slowly unload with Liam in the cart still.  I pick up our bread and didn't notice that the sticker from our raspberries was attached to the bread bag.  So as I put the bread in the car, all of our raspberries fall to the dirty cement ground.  I start to scoop them up when I hear Liam say "here mommy" I start to look up and a box of strawberries comes crashing down on my head which then fall on top of the raspberries and smashes them!

I take a deep breathe.  Salvage what I can and put Liam in the car before finishing my loading.

All finally seems calm.  I put the last item in the car, and the no longer heavy cart starts to roll away ever so slightly.  It hits a dip in the parking lot (or should I just say a crack because it was only about 12 inches long) and my soda, my cherry coke to be exact, falls over, the lid comes off, and all but a sip is now on the concrete.  I push the cart into the return, get into my car, call my husband to tell him I am slightly insane after today, and I head home.

So oh dear Mr. Murphy, you can take your law, and leave me alone, please!

All the while I am smiling and singing Francesca Battistelli "This is the Stuff"

And now my friends they are napping!

Tuesday, May 31, 2011

Living with Lennox-Gastaut Syndrome

As the title suggest I figured it would be good to talk about some of the things in our life that are bringing us to a "new normal."  I by no means am an expert nor have I lived through this long enough to know much at all.  All I know is what I see, do, and learn each day. 

Six weeks ago when we left the house for any amount of time the call would be for sippy cups, diaper bag, and on the very rare occasion Gracie's seizure bag.  Now, it is still sippy cups and a diaper bag, but also Gracie's helmet, Emergency Meds, and the Seizure bag.  Not a huge increase in stuff, but still more things to remember.

Before we even left the hospital in April we had to have a new car seat for Avagrace.  Prior to starting the ACTH injections she was 52 lbs.  When we left the hospital (and two weeks after the first weigh in) she was 65 lbs and some odd ounces.  The car seat had to have a five point harness to keep fer from "folding in on herself" in the booster seat with over the shoulder seat belt that we used with it.  The seat we chose is awesome because it keeps her in a five point harness until 85 lbs.  It was a pretty pink which appealed to her despite the fact that she was going back into a "baby seat."  We just told her she was in a race car drivers seat.  :)  Here is a picture and a link to the seat...

Britax 85  Ok I cannot get a picture to load so I will try later. 

Her seizure bag is this:  A book bag with a warm, soft, and large blanket.  She has two blankets that we rotate.  One is a queen size flamingo pink thin minky fleece material that we got from Target.  The second is a twin size, thick minky fleece in pale pink and it is so thick it is quilted.  We have these because she has a hard time regulating temperatures especially when Post Ictal.  We also have her favorite snacks including easy to chew ones like pudding.  If we have to go to the hospital for her seizures she is always starving when she comes around and there is never enough of what she wants or can eat.  We have water bottles, a few small art activities in case we are in hospital for a long time, 2 Goodnights and two changes of clothes for the vomit and voiding problems that come from seizures.  We also have a two day supply of her medicines in case there is none wherever we are.  

So, I hope this helps.  I am going to end here and will write some more another day!  Blessings to all!

Tuesday, May 24, 2011

Raising Awareness and Starting a Non Profit

Hello all, my my it has been a choppy blogging life as of late.  With all of the new doctors appointments, hospital stays, and lifestyle changes I have been struggling to find the new normal.  However, we will get there, slowly for sure, but surely!  The last post on here I gave you the link for her fundraiser.  Today I want you to look at the top of the page (yes it looks very different, what do you think?) and I want you to notice the tabs!!  I am so excited about these little guys :)  There is a tab for Avacake and our mission!  Please PLEASE PLEASE pass the word around.  If you are interested in adding a button to your blog, I will be sooooo eternally grateful, please email me or leave a comment and I will send you the HTML code....and if you haven't already, head over to facebook and "Like" Avagrace's page!

The next thing I want to tell you is that in the midst of all of this, we are starting a non-profit org. for all of the children living with catastrophic forms of epilepsy.  AWARENESS is needed, understanding is required, and compassion is a must!  I also hope to bless families with the DME that our country currently does not have available for true DME coding!  So many children need Anti-Suffocation pillows from the UK and seizure monitors, and helmets!

I am so excited to get this going, and for now I ask that you please pray for me and our foundation!  With God all things are possible, and without HIM, we labor in vain!

Be blessed!

In case you forgot :)  Here is the facebook page link :)  https://www.facebook.com/pages/Help-Avacake-make-Epilepsy-Crumble/206574129363411?sk=info#!/pages/Help-Avacake-make-Epilepsy-Crumble/206574129363411?sk=wall

Sunday, May 8, 2011

My Avacake!

Please Check out her Facebook Page!  Help Avacake make epilepsy crumble!
https://www.facebook.com/pages/Help-Avacake-make-Epilepsy-Crumble/206574129363411

Avagrace is a six year old Air Force kid who is fighting Lennox-Gastaut Syndrome.  LGS is a catastrophic form of epilepsy that causes mental retardation and worse.  Currently there is no cure for LGS and only one FDA approved medication.  LGS presents any and every form of seizure and the seizures are uncontrollable.  This is to help Avagrace get the gear and medical treatment needed to give her the best possible chance.  Check out her Facebook page for more info!  Together we can make a huge difference in such an amazing little girl!

Tuesday, April 19, 2011

Not sure what to do!

So I know this sounds so crazy, but I do not know which blog to write on. I want to be done with the blog shopping. I want to keep my archives. I want to move mountains for epilepsy awareness. I want to write, and write, and write. I want to create, and feature products for mama artists. I want to share tips, crafts, and wisdom! I want to continue down my bloggy road! I love the ease of blogger. I love the fact that it works well with google and keeps all of my administrator stats all in one spot. However, I am so flaming angry that my URL was given to someone else. I am also even more frustrated that I cannot repurchase my URL for a custom domain. Lastly, I like the blog.com site however, it is not blogger. It is expensive, and does not have the same support that blogger does, but it has a great URL. Easy to remember, very close to my old one, and true to my copyrighted Seven Swans A Swimming title! So what do I do?

Wednesday, April 13, 2011

Finally

So I finally got the URL fixed, at least a bit, here on blogger. You see I had paid the yearly fee for my own web domain. However, when the renewal time came up I was on our 6 week road trip to the East Coast. So, when I came back it was too late to renew it and blogger had given away my original URL. So after months confusion I have a new URL on blogger and a URL on Blog.com. I am indecisive and cannot decide which set up I like more. So I will post here today and see how it goes!