Bowling fun!

Yesterday I took the kids bowling.It's always fun to go bowling and get snacks from the restaurant.A pitcher of soda and several appetizers.It was a fun day for all,despite my terrible bowling score.

Purple Day!

Tomorrow is purple day for Global awareness of Epilepsy Day!There certainly needs to be awareness,because unfortunately there is still a lot of misconceptions about Epilepsy,one of them being that Epilepsy is a very benign disorder that is easily treated by medication.The fact that there are so many injuries and even deaths related to seizures seems to be swept under the carpet.Sadly sometimes it seems by those that promote Epilepsy awareness.One of our favorite organizations for Epilepsy awareness is This one:

http://www.facebook.com/profile.php?id=100000576952851#!/groups/201503483233598/

The Hutchison's lost their precious 16 yr old daughter Chelsea to a seizure.
Please read this post I did a few months back about the true and often tragic story of uncontrolled seizures.Our family has been struck by the difficult grip of uncontrolled seizures and how they can affect,your body through injury,your brain through memory loss and cognitive issues,your family often through seclusion and isolation,your finances,every aspect of your life.

http://marrerofamilymakingthemostoflife.blogspot.com/2011/10/sudep-sudden-unexplained-epilepsy.html

Here is a video of my kids story I recently did when we were having a particularly hard week.Thank you to everyone that has shown support and given love and encouragement.

Figuring out when you need a new set of eyes to look at things.

We've been at this road many times in the past.I always hate it when I'm facing this.Ariel has been my most non-textbook child.

It took us many years to get a proper diagnosis for her.For years I begged and pleaded with doctors to figure out what in the world was wrong with my daughter.How my perfectly healthy normal daughter went from being able to do pretty much all things that a 6 year old could do,to being a child at 9 years old that no longer understood things and didn't even know what shapes were.

She also started having a lot of other medical issues that were odd.Like Osteomyelitis and Tenosynovitis.Anyway it took us many years and many specialists to finally get some proper treatment for her.

Even after Ariel had a horrible Status Epilepticus event in June of 2009 and had 15 convulsive seizures back to back and ended up with a nurse by her bedside for a week in PICU.I finally had gotten to the place of thinking now they will see that there is really something major going on with her.

Then when her Neurologist signed her Make A Wish papers.I thought for sure they will take things seriously,boy was I ever wrong.Shortly after our Make A Wish trip I reluctently allowed them to send my daughter to Children's Hospital for a week of testing.I have never had good care there.Not in the Epilepsy unit anyway.They may be great as far as other services,but Epilepsy no.

Well the Neuro there saw a video of my daughter in a Dyskenesia episode.Ariel gets horrible Dyskenesia from certain meds.Dyskenesia is a movement disorder that normally does not effect your mind,well in Ariel's case it does effect her mind and makes her go into seizures, it's awful.Thankfully after 2 horrible incidents with it,it is well documented.

Well this particular doctor saw the video and labeled Ariel as having Pseudo seizures or psychological ones.I was furious.Every EEG she has ever had has been abnormal except for twice when they did one after giving her 4-8  I.V. loads of medications to calm her brain down and then when it does they say she's faking it.

Her Neuro started treating her funny after that.He ordered a spinal tap,guess what? It was abnormal she had elevated pressure and protein.Then he said run and do all these tests for all sorts of horrible fatal diseases and disorders,when those came back normal he again started treating her funny.

Even though he had been her doctor for many,many years.I finally realized he could no longer treat her objectively.He had been tainted by that Seattle doctor. We left him and went to his partner,well when she started seeing Ariel the first thing she mentioned was the Pseudo seizures.He had made sure to put in his report to her.I was so angry and told her she does not have Pseudo seizures.She said well lets do an EEG for a week.I agreed and guess what? After a week she pretty much said her brain was firing constantly.Then she had second Dyskenesia episode at the E.R. when we were there for an ovarian cyst that was causing her much pain.

They gave her Morphine and Zofran and her eyes immediately rolled back in her head,she started making this weird grunting sound and then started doing all these flailing movements.It was horrible.Then she started seizing.She had to be transported to another hospital by ambulance.In a way though it was a blessing,because it finally put to bed the whole Pseudo seizure garbage.

After that she has been an absolutely wonderful Epileptologist and Ariel's staunchest supporter.Once we ended up going to Harborview in Seattle, one of the top notch Epilepsy centers in the country,and they said her brain was firing constantly, and that they believe she has a devastating Epileptic syndrome, and they pushed for her to have the VNS placed Ariel started getting better treatment.

Now that she is having the situation with kidney stones and keeps getting this chronic bone and joint pain and having other issues I'm feeling like she needs to see a Rheumatologist or another specialist.She has a couple doctors that lately I'm feeling are not addressing the concerns we have.I hate that it often gets to the point of Ariel having to be in dire circumstances for people to listen.

We also have the added stress of her being physically 18,although not mentally.Our children's clinic that we love will not treat them after 18.It's so hard to start over and forge new relationships.The Epileptologist that I really wanted to take her to,our insurance won't cover.That was so disappointing.Hopefully we can find some wonderful new specialists to take care of Ariel's needs.I appreciate the prayers over this situation.

Another procedure for the princess.

Well today was another procedure day for Ariel.She had another Endoscopy one of many she's had.We went in the procedure room where they covered her with hot packs trying to plump up her veins and waited.

She is such a champ barely even flinches when they poke her.Thankfully it only took once to get the i.v. in her.We had wonderful ,kind, caring nurses today.They even gave Ariel a stuffed alligator.They took her back I stayed until she was out.She put up a bit of a fight,but then zonked out pretty quickly.

She was only in for 15 minutes when they brought her out.She was sleeping pretty deep,because she was alarming pretty good.The doctor said her stomach was pretty red and inflamed.They did Eosinophil tests,tests for H-Pylori,Celiac and several other things.The doctor said she thought she might have h-pylori or it could just be all the meds irritating her tummy.

She's now home feeling a little icky laying in bed resting.Hopefully she'll be feeling better later on.

Some of the hardest days........

Recently I've had some of the bluest, toughest moments ever.Everything has just hit me like a ton of bricks.This last seizure Daniel had coughing up blood, choking,turning blue and unresponsive was just awful.His seizures have always been horrible,but lately they seem to continue to get worse.

Ariel's had so many issues between seizures,kidney,stomach,wrists you name it.Not sure if this is all part of this syndrome or not,but I suspect it is.


We've had a lot of losses recently due to SUDEP(Sudden,Unexplained,Death in Epilepsy Patients) I wrote more in detail about it here:
http://marrerofamilymakingthemostoflife.blogspot.com/2011/10/sudep-sudden-unexplained-epilepsy.html

I think this is something that all parents of kids with Epilepsy,especially when it is Intractable fear.
Something I try not to think about a lot,but it is always on the back of your mind.

Last week I sat in a little coffee shop reading my Bible and meditating on it.I especially like to read the Psalms during blue periods.I had been thinking about things and thinking why? It's feels so unfair sometimes.My kids should be doing what all the other kids their ages are doing.This syndrome has not only wiped their bodies of so many things and has caused so many physical problems,but has completely wiped their brains of so many things,like memory,thinking skills,understanding and has also caused horrible sensory issues ,especially with Ariel.Crowds absolutely make her shudder,whether it be at church a restaurant or wherever.

I was reading in Ecclesiastes about life and the meaning of life and realized that some of the things that I've been so desperately clinging to the Bible calls vanity.Not that God doesn't want you to have an abundant,rich and joyful life,but if that means serving God making the most of each day God has given us, then so be it.Even if that means just doing the mundane,day to day things.

 None of us are guaranteed tomorrow.Our life is but a vapor.

²⁵Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than meat, and the body than raiment?
²⁶Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?
²⁷Which of you by taking thought can add one cubit unto his stature?
²⁸And why take ye thought for raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin:
²⁹And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.
³⁰Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?
³¹Therefore take no thought, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed?
³²(For after all these things do the Gentiles seek:) for your heavenly Father knoweth that ye have need of all these things.
³³But seek ye first the kingdom of God, and his righteousness; and
all these things shall be added unto you.

Also:
Philippians 4:19
But my God shall supply all your need according to his riches in glory by Christ Jesus.



What I take from this is that God knows our needs and he shall supply them,no matter what it is.I think it's sometimes the timing part that trips us up.

That's why I'm learning to praise God through life storms,but it sure isn't easy.
http://marrerofamilymakingthemostoflife.blogspot.com/2012/03/praising-god-through-storms-of-life_7991.html

Praising God through the storms of life.