Friday, January 30, 2009

So here it is... The Prognosis



Oh this could take a while. I have been up since 4am and this has been the longest day of my life I think. So here it goes..

Kahlai's EEG was SUPER abnormal... and I try to say that in the most understanding way. In one hour of monitoring, there was not even 10 seconds of normal activity.... WHAT?!?! My boy??? MY BOY?!?! Abnormal? Are you joking? This must be a dream... a bad one.. cause I still don't think it's really set in yet..

Kahlai had over 40 seizures by 2pm... we met up with the Ped Epileptologist we have been working with this week and she gave us the low down.

He has primary Generalized Epilepsy of the Myocronic Type. This means that there is no rhyme or reason for the seizures. There is no stimulus, trigger and the MRI in two weeks will tell us whether or not it has any metabolic base.

The doc said that it was a severe case and just so happened to be a very unusual type of epilepsy that is most difficult to control.

Then she told me not to cry... told me that it wasn't a death sentence... and I told her that like other things in my life... I am just having a slap of reality that I am not immune to things happening in my family... that all of those unimaginable things don't just happen to "somebody else's kid".

So he kept seizing in the clinic today... i kept counting and once i surpassed 40 she stopped me and told me to stop counting. I told her that it is nice to know so that i can measure progress... hmm.. I think I'll still keep a count anyway.

What the heck am i talking about.? My son... MY SON... MY BABY! My, now, epileptic child. Wow. Whoa. What?

So we are trying to educate ourselves an our families on this so that they all understand the best about about all of this. This weekend is his dad's weekend and it is hard for me to be away from him... VERY HARD. He has developed a rough cough over the course of the evening and it has only gotten worse tonight.. i can hear him cry on the phone... this is breaking my heart in more pieces than I ever thought my heart could be broken in...

However, i will not emotionally attach to the medical report.. all of the possibilities of negativity and allow them to paint a picture so dark that we can't see a bright future for our son.

Instead i will believe in the report of the Lord. That is all.

I am exhausted and pretty close to blank.

Please pray for us.

Thank you.

The "Jerkings"


Well I haven't blogged in a while and it's because honestly I have been very busy.... and my computer is in the shop.. both of them.. augh.

I jumped online for a second to give a brief update as a wuick attempt for a prayer request.

Kahlai has been diagnosed with Myoclonic epilepsy.

and now the million dollar answer to the most commonly question I have been asked over and over.... ("Are you serious?").. Yes. I am serious.

This morning he will have an EEG done to try and pin point where the seizures are coming from in his brain. Please pray for Kahlai as he really needs a lot of prayer. Hopefully the diagnosis was wrong and it will not take as serious of treatment as they have described to get them under control. Wednesday he had 29 seizures and in addition, he also experienced what is commonly known as a complex partial seizure.... he was unresponsive.... looking up at the ceiling with a glassy stare and making movements that just made no sense at all. Yesterday he totalled out at 47 seizures... and within the last hour he has had 3.

If you have any info or personal experience with epilepsy and wouldn't mind sharing... i would love to hear about it. Good or bad stories.. I don't care which, just having a personal connection outside of researching online and reading case studies would be nice. Also, if you have any reccomendations for a ped neurologist to St. Joe's hospital... we would like to have a second opinion.. and would like to connect with the barrows center instead of Phoenix Children's Hospital.

I thank you all in advance for your prayers.

I'll keep in touch and give an update on how it went later today...

Sunday, January 11, 2009

This is the day that the Lord has made..


And Tomorrow is the day I will be most dependant on him...

(Deep Breath)... tomorrow is the trial so please pray that God puts favor on Kahlai and I. After weeks and months of preparing and many thousands of dollars, I have realized that this is not the end. What will i do for the next 15 years? Hopefully i will not be shelling out 6 grand a year to an attorney!

I need some help. So if you are reading this and you have some suggestion, please feel free to share. Here are my questions:

1. How do you respond to a child who is acting out... when you know that it is because of the confusion that is stirred up by the other parent?

2. How do you communicate with someone that yells at you all the time, tries to make you feel inadequate and then harasses you about your unwillingness to cooperate with what they feel is the right thing? and how is it that some people are genuinely convinced that there cannot be any other way than their own? I am not to judge, but to me this sounds like someone that doesn't know our Lord and savior, because HIS way should be the only way..... our way means nothing and leads to destruction. I know that i am responsible for my side of the communication, but if he is not willing to budge an inch or even give me the common courtesy to finish a sentence, I gotta tell you... I am pretty burned out on being "talked to", belittled and demeaned by this man. I don't intend on volunteering to be abused again, but there has got to be some way... oh yes.. pray. I do... but there must be other things I can try.

3. Why does this have to be so hard???? It tears me up to think that my consequence for stepping out side of God's protection with Kevin resulted in my son paying most of the price. When he falls a sleep, I can't help sometimes but to watch his peaceful face, cry and apologize to him. I'm soooo sorry Son, if Mommy never wanted anything like this for you. I wish that I could just pay the price and be done.... and exempt my son from the Storm.

4. I want this to GO AWAY! In a perfect world, Kevin would have been a great man, we would have been married, picket fence and a happy family. But in our world, he is different, I tried my best to hang in there, and now it is a battle that is way out of my realm. I am not the fighting type. I do not like to argue and would rather just go to sleep and wake up to a different life for my son.... at least .....where mommies and daddies all get a long and can communicate as friends. Weekend visits are fun and holidays aren't so hard. We all set aside differences and just focus on being parents.. and..... family. After all... we are still family.. in a way. I don't hate him... I just don't understand why he can't be more mature in his approach to parenting. I assume that since he first had a kid when he was a kid, that he just never grew up.... perhaps he never will. For my son's sake I hope he does.

So tomorrow is the day. Please pray for us... and most importantly, please pray for Kevin's heart.... a hedge of protection around Kahlai and for me.... I'm not sure what i need. .. perhaps just God to come down and give me a big hug!... and wisdom, courage and understanding.

to be cont.....

Thursday, January 8, 2009

If only cars could Heal....

Well... I must say that today was an interesting day...

So my car has the flu... well.. actually it just sounds like it has bronchitis and I took it in to the nice boys at Motortec to see what the problem was and how much it will cost to fix it...

Are you ready for this?

Almost $1800 dollars!

WHAT?!?!?!?
In case you were wondering if I had a money tree in my back yard.. Ummm....I don't.

So I will wait... pray... and see what can be done about this... Hopefully something... because If I have to choose between keeping my attorney through my case or keeping my car on the road.. I'm not realy sure which one sounds better considering my court case.. hmmm.

PLEASE PRAY FOR ME AND MY CAR... I don't have a name for my car... I think it's a guy thing to name your car so... if you are going to pray for my car... It's a Jetta... it's a 2000... and I know it's old now... but it's all i have until i graduate college and am able to get an amazing job to fix my credit and get a new car.

So there... that's my day...

Oh! And I met with the lovely ladies of the PEO organization... what a lovely group of women.. so much love and kindness in their eyes... I want to grow up to be like them!... and help people.. and be excited about it too!

Ok.. I'm off to bed.. big day tomorrow.... and I'm on my second week now of trying to become an early bird instead of a night owl.

to be continued....

Friday, January 2, 2009

It's a New Year Friends!











I"m so ready for what the Lord has in store for Kahlai and I this year. So far it's started out pretty great and I have to know that he is working in my life, in every situation. This holiday season has been really good for me. The other 2 kids aren't coming today due to a death in their family... sad. I will miss being super nanny, but honestly, I need a day to run a few errands and my car only seats five... including me.. so I was pretty stuck here this whole week.

Last weekend Kahlai and I went to the park. I posted some pics from his first train ride. Every time that we have gone to this park, the train was broken so he was so happy at the park that day he was trying NOT to smile so much and show his joy.. I don't know why.. he has just recetnly become bashfull about being happy sometimes.. perhaps it's a 3 year old thing.

This year I will take a stand for genuine happiness. I am trying to committ to a quest for genuine happiness. If I can't find it, how can I expect my son to? If I am sad all the time about the choices his dad makes... how can I expect my son to find a healthy balance and comforts? Being emotional about stuff I can't control just doesn't make much sense... sure it's understandable, but it doesn't make much sense.

Today is a new day, a new year, and a new love for life.

Stay tuned.