Wednesday, September 9, 2009

Just an Update

I haven't really been on here much and I apologize. I have recieved a few emails asking "What's going on"? and I just wanted to post an update really quick.

Kahlai has (AGAIN) developed a horrible allergic infection to what we are pretty sure are mosquito bites! The pics are gross so I will spare you. I took him to the ER on Sunday where they transported him to St. Joes. We stayed there over night and thankfully got to come home. I have to take him back tot he doctor now becuase his legs look like the infection is spreading up his leg. I will let you know.

Also, we are scheduled for another monitoring stay TOMORROW! It will be hard to keep him in the room and entertained, but it will be so nice to see how his little brain is doing. He has jumped through hoops in the past 8-9 months and I just admire the courage and strength this little boy has. I am certain that my son is here on this Earth to teach me the biggest lesson on LOVE.

So I will keep you updated. We are planning on doing a little video posting with my new webcam that I have to use for one of my online classes. Kahlai LLOOOOOOVES to watch himself on the videos. Watching and repeating himself and laughing at his own jokes has become his new thing.. lol. OH YES.. and he has learned to use the computer! He sits next to me sometimes while I do homework and I let him watch the Lightening McQueen and Mater cartoons on You Tube... he knows how to press play and pause it if he needs to "tell me a seekwet" LOL.. OH I <3 THIS KID!

Monday, July 27, 2009

Kahlai is goona be 4!!!


Geez this is happening waaaay too fast!


I go to visit my dear friend Amyra the other day (who has been in the hospital for a week now poor thing) and realized that it was the four year anniversary to when I was admitted into that SAME hospital to be prepped to have my son. It really took me back.. really? FOUR YEARS? Where did it go? Did I enjoy them? What am I doing? Time is flying and I feel like I'm standing still... waiting for the big day.. What DAY?


Last weekend we had his party and for the first time.. it wasn't this big ordeal where I almost crashed as the last person left the house... lol. No seriously.. I don't know why in the past three years I have felt like my son has needed a formal ball (kid style) for a birthday party... ridiculous- but it was what I felt probably made up for something I do not wish to go into detail about as his dad prints these blogs out and tells me he will use them in court against me.. it never seems as though I say the right things.. but I just don't care anymore.. doesn't matter.. it's my blog and I use this to keep you all informed of what is going on with Kahlai and I so PRINT THIS! Ha ha ;)


So anyways, today is the reason why I wanted to blog again. I know it's been a while.. and now you can understand why.


We went to visit my friend in the hospital again and Kahlai was SUCH a good boy. He used all his knowledge about being in a hospital to be very helpful to her.. no seriousy. He taught her how to use the buttons to operate her bed.. (not the ones on the handles.. the master controls on the bottom lol.) Then he helped the nurse change her linens and stacked up all the stuffed animals people had gotten her and told them all to be nice when she got out of the shower. Last time we went to visit Amyra, it was just after his party and he got a keyboard from his grandma. He practiced a song that he wanted to go sing to Amyra and b4 I could finish mopping the floor he was loading the keyboard into the car in the garage... So sweet. On our way to see her this weekend he bought her a Disney Princess bubble set and then today opened it up for her and played with it... spilled bubble solution all over the floor and ate part of her lunch "for her". He gave her one of his capri-suns and then asked for it back b/c he was "firsty". Did the same with some fruit snacks and ate them while she was in the shower lol. He told her it would be alright and then as we were leaving he said that we should go get her and take her to our house so she can be happy. I love my son and am so glad to hear these sweet words come out of his mouth and hear the kindness, compassion and care that he is showing more and more every day.


So then we get home and Kahlai always likes to spend some quality time with "Nana". So they went upstairs and I just knew by the look on her face that the sweetness coulnd't have lasted more than 5 minutes up there... my poor mom.. Kahlai always seems to break something of hers in a flash... seriously.. A FLASH and then... spends the rest of the time trying to make you smile and be happy after you are sad that your nice things are now ruined. lol


Just a part of having kids... no wait.. I only have one... and one is obviously enough! lol


All in all.. we are well. Kahlai is doing good. Still having seizures and we will be going into the BNI for monitoring in September so I will keep you updated.


OH! and I have my own website now... tell me what you think! http://www.angeliquewhite.com/


Thursday, May 28, 2009

Half Way There

I haven't blogged in a while but wanted to give an update to those who get on here to check how we are doing. Kahlai has been doing much better. Since the last adjustment to his meds, he has not shown many signs of seizing during the day. He is still seizing at night, but now there is nothing I can do about it until I can get his dad to agree to add a medication only at night to stop the night time seizures... or get the court's approval to make the call myself.

THis last month has been a wild ride. I graduated with two degrees as an honors graduate with high distinction and Phi Theta Kappa. Patrice sent me on a week vacation to Newport Beach with my best friend and I remembered what being a woman without stress was like. (wow). Came home with fresh ideas of how to handle certain stressors and so far so good.

I had to take an incomplete on 3 classes in order to survive last semester. They let me walk with the degree anyways.... but I have a bit more work to do still.

Next semester I am off to ASU... to their school of Design. I am praying that some scholarships line into place.. crossing my fingers, praying and more praying!

I'll try to do better about keeping this updated....

Saturday, April 25, 2009

It must be in the plan for us.


So I haven't been blogging much because I have been really trying hard to stay positive and be productive with all that we have had going on. After we came home from the hospital week before last, I had to play catch up. The good news is that Kahlai isn't going to be put on meds for being three. (eh-hem).

He IS hyper... but we took a pill from mid day and moved it to the evening and WHOA what a difference that made!

He has his moments... but in the past week he has been such a joy to be with and we have shared so many belly laughs... it feels good to have my boy back.

Kahlai is a comedian... no really.. he is. He has begun what I think will be lifetime of making people laugh. He has created his own knock knock jokes.. something you have to hear and I will try to get a video and post it soon.

He makes me smile... and often remember that days are short and lifetimes fly by if you can't stop and share the joy with those who are most meaningful in your life.

All that said... those times have been conveniently created for us.... days upon days sitting in a hospital room... a choice, to either stare at the walls, a tv, or we could finger paint, make a fort on the bed and "hide" from the nurses, sing silly songs, make up dances, decorate the room with coloring pages and call the nurse in for more juice, cups, ice, sheets, tape, gauze wrap, stickers... bed pans and a pair of scissors cuz we have an idea for a craft! lol.

On Tuesday, I went to class and when I came home, Kahlai had what looked to be mosquito bite. Kahlai is somewhat allergic to mosquitoes and swells up pretty good when he gets one... this time it was on his leg. It was Kevin's night to have him so I had him prop his leg up, put a bandage over it, cool compresses and some after bite. No fever.

I dropped him off to his dad. Told him what was going on and by 10pm Kevin took him to urgent care because the swelling had gotten worse and had a low grade fever of 99.5. He was still walking on it, but seemed not to really want to come home with mommy... it's always hard to say no... but it wasn't my night so I went home.

The next day Kevin brought him back to me just after noon. Within a few hours I had seen it swell more, and start to get dark so I took I'm back in to the urgent care ER in Gilbert.

There, they started him an IV and took us by ambulance to a hospital where we were admitted for 3 1/2 days.

What probably started as a bug bite, had become seriously infected overnight and or he has MRSA? The docs were never sure, didn't get enough junk on the swab to culture for a diagnosis, but with IV meds, prayer and time, he is getting better and was discharged today.

I can't tell you how I loathe being in the hospital.. this one had no wireless Internet so I struggled to get a scholarship app in (thank you mom for dedicated the entire day to helping me get it in.. you are an angel!). My homework has been waiting for me...lol. SO I will post this and get right to it.

Just wanted to update everyone with what was going on.. thank you so much for your support and please please please pray for this scholarship! It is worth enough to cover the majority of my tuition! (crossing my fingers).

Tuesday, April 7, 2009

Here it is.. Finally

So we came in for a "routine" monitoring Monday morning... for what was supposed to be a 24 hour visit. I refused to pack anything for this trip because I did not want to encourage nor entertain the idea of staying here...

I should have packed.

I must have gotten home and comfortable and forgotten what this place is like... how short the oppertunity to talk to the docs are and NEVER knew what is was like to have a NOT SICK child in the hospital... this is special.

So we are here trying to record him having some seizure activity. Good news is he is not having them very often... so that means we have had to stay longer so that we can catch a few different kinds..

It's like the opposite of why we were here last time...

We come in while he is fine...

We have to stay because he is better...

What the Heck? lol...

So he was hooked up to video and EEg monitoring... I told him that they are making a movie about him... and that he is the star!


He wants to go home, but I think he is enjoying charming all the nurses when they come in.. He has made up a few original knock-knock jokes and makes me crack up sometimes... my favorite is his ice cream soda knock knock joke

Today they said that Kahlai probably has ADHD..and want to put him on riddlin (or however you spell it).

What are your thoughts....? Im not making a decision on meds and am going to try to decrease his energy level with diet first.

I am going to take my collaberative entries and opinions and I've asked the nutritionist to come talk to me about starting a diet..

Amy, Sorry I couldn't call you back or take your call.. Kahlai has been a handfull. But I listened to everything you said and I thank you...

My mom came and helped me with Kahlai so I could shower and blog really quick... he was giving her a run for her money that I ended up having to save it and post an update a little late so sorry...

So here is day three.. We are told we can go home today. They didn' get what they wanted but we are going home anyway. YEEESSSS! Poor Kahlai is ready to be home and I am tired of sitting here telling him to be still and quiet...

He just got taken off the monitoring and Mickey and Minnie Mouse are going to be down the hall in 10 minutes! Kahlai has not been eating well so as I type I am telling him that if he eats we can go see them... its not working.. ;(

So we are waiting for the Pshychiatrist to get here so that we can go home. We are packed up... and ready to go.

So far this is what the epileptologist said:

His brain activity looks GREAT.. he is having long spans of normal brain activity when before he wasn't at all.

We are going to try altering his meds to try and provide him more protection against seizures while he sleeps.

and the usual.... follow up follow up... follow up.

Monday, March 23, 2009

So I think I have officially reached the neck of the bottle

I haven't blogged in a while because I have been extremly busy... Kahlai is doing better with his seizures... we are sick right now so he is having more than he has had in the past few weeks but other than that we have mainly been dealing with the side effects to the meds.

On more important news...

My poor friend Michelle is back in the hospital with her boy David for what might be his 28th surgery on his brain!! Please keep her in your prayers as they need as many prayers as possible right now. CAN YOU IMAGINE?

She also has a blog page. I'll ask her is I can share through mine.

Monday, March 2, 2009

From a Friend.. and I LOVE IT!! THANKS!

RICK WARREN (REMEMBER HE WROTE 'PURPOSE DRIVEN LIFE')

also he did the debate with McCain and Obama.
You will enjoy the new insights that Rick Warren has, with his wife
now
having cancer and him having 'wealth' from the book sales. This is an
absolutely incredible short interview with Rick Warren,

'Purpose Driven Life ' author and pastor of Saddleback Church in
California
. In the interview by Paul Bradshaw with Rick Warren, Rick said:

People ask me, What is the purpose of life? And I respond: In a
nutshell,
life is preparation for eternity. We were not made to last forever, and
God
wants us to be with Him in Heaven.

One day my heart is going to stop, and that will be the end of my
body-- but
not the end of me. I may live 60 to 100 years on earth, but I am going
to
spend trillions of years in eternity. This is the warm-up act - the
dress
rehearsal. God wants us to practice on earth what we will do forever
in
eternity. We were made by God and for God, and until you figure that
out,
life isn't going to make sense.

Life is a series of problems: Either you are in one now, you're just
coming
out of one, or you're getting ready to go into an other one.
The reason for this is that God is more interested in your character
than
your comfort.
God is more interested in making your life holy than He is in making
your
life happy. We can be reasonably happy here on earth, but that's not
the
goal of life. The goal is to grow in character, in Christ likeness.

This past year has been the greatest year of my life but also the
toughest,
with my wife, Kay, getting cancer. I used to think that life was hills
and
valleys - you go through a dark time, then you go to the mountaintop,
back
and forth. I don't believe that anymore. Rather than life being hills
and
valleys, I believe that it's kind of like two rails on a railroad
track, and
at all times you have something good and something bad in your life.
No
matter how good things are in your life, there is always something bad
that
needs to be worked on. And no matter how bad things are in your life,
there
is always something good you can thank God for.
You can focus on your purposes, or you can focus on your problems.

If you focus on your problems, you're going into
self-centeredness,'which is
my problem, my issues, my pain.' But one of the easiest ways to get rid
of
pain is to get your focus off yourself and onto God and others.

We discovered quickly that in spite of the prayers of hundreds of
thousands
of people, God was not going to heal Kay or make it easy for her. It
has
been very difficult for her, and yet God has strengthened her
character,
given her a ministry of helping other people, given her a testimony,
drawn
her closer to Him and to people. You have to learn to deal with both
the
good and the bad of life.

Actually, sometimes learning to deal with the good is harder. For
instance,
this past year, all of a sudden, when the book sold 15 million copies,
it
made me instantly very wealthy. It also brought a lot of notoriety that
I
had never had to deal with before. I don't think God gives you money
or
notoriety for your own ego or for you to live a life of ease . So I
began to
ask God what He wanted me to do with this money, notoriety and
influence. He
gave me two different passages that helped me decide what to do, II
Corinthians 9 and Psalm 72

First, in spite of all the money coming in, we would not change our
lifestyle one bit. We made no major purchases.


Second, about midway through last year, I stopped taking a salary from
the
church.

Third, we set up foundations to fund an initiative we call The Peace
Plan to
plant churches, equip leaders, assist the poor, care for the sick, and
educate the next generation.

Fourth, I added up all that the church had paid me in the 24 years
since I
started the church, and I gave it all back. It was liberating to be
able to
serve God for free.

We need to ask ourselves: Am I going to live for possessions?
Popularity?

Am I going to be driven by pressures? Guilt? Bitterness? Materialism?
Or am
I going to be driven by God's purposes (for my life)?

When I get up in the morning, I sit on the side of my bed and say, God,
if I
don't get anything else done today, I want to know You more and love
You
better. God didn't put me on earth just to fulfill a to-do list. He's
more
interested in what I am than what I do. That's why we're called human
beings, not human doings.

Happy moments, PRAISE GOD.
Difficult moments, SEEK GOD.
Quiet moments, WORSHIP GOD.
Painful moments, TRUST GOD.
Every moment, THANK GOD.
God's Blessings on you today.

NOW. PLEASE SHARE THIS WITH YOUR FRIENDS.

Wednesday, February 25, 2009

Joy Joy Joy

Still waiting to get word on my computer... Augh. Kahlai has his Neurology appt tomorrow at 1pm so I'll keep you posted on what she says. Kevin and I have agreed that we would like to switch doctors... I am just trying to remember all of the things I have to do. .. ASU apps.. scholarships.. hmm.. insurance... and what else? Oh yes.. homework.. that I cannot do. Damn.

Kahlai has this intense craving for PIZZA all of the time! So I make him "Pizza" for breakfast...

So here's the layout..

Canned Biscuit on the bottom.
Cheese.
Egg ( he prefers fried )
Bacon
Some more cheese.

At first I thought.. as long as he is getting in the fat and calories that he needs.. I'm good with it. But then I found myself diggin in in no time! lol.

I have been really trying to Not gain weight, but it almost seems like the more I think about losing weight.. the more I put on! ~ How in the world? lol

So now I am thinking that I need to take some drastic measures... I'm going to have to force myself to take time in the day to exercise.. I heard that you have more energy when you do exercise... just the thought wears me out. ;) So I'm increasing my water intake.. it's a first step... if you have any great diet ideas.. I'm ready to listen.. or read.

I would think that as much as I chase him around all day.. I would be super tone and healthy.. hmm.. something is wrong here.. oh yes. STRESS... the five letter word that has the same affects on my body like CAKES or SWEETS do!

I'll update after the appointment...

Friday, February 20, 2009

They didn't say this was going to be easy

Actually, he didn't really say much at all. I am realizing from talking to this person and that person and this department and... deep breath... that I have been handed a problem with out much direction to where the solution is. My computer has been shipped out from Best Buy since Jan 5th! My other computer with CAD on it is fried and I am trying to find a way to fix it... so I haven't turned anything in since the first week of the semester... I can see the patience wearing thin on my intructors face at sschool.. oh boy.

So I am petitioning for a refund for my guitar class... $320 that i am supposed to not get back.. but i am going to turn in that petition and CLAIM that money back! i only had ONE LESSON!

So my new focus is on Kahlai's behavior.. he is severely hyperactive at times and I am having a hard time determining what is defiant behavior.. or what is a side efeect to meds... or if he is not being a good listener because he is having an absence seizure... this is hard... and quite frankly it's pretty frusterating. I feel the need for a live in neurologist.. Know one?

I need a nanny or a sitter so that I can go to school. I am feeling like the rug has been pulled out from under me and I have lost focus. I have fallen into a dark pool of water and can't see the upward traveling bubbles.. so I have just taken a moment to feel weightless .. even just for a moment.. I do this by watching a movie and forgetting everything around me. I haven't blogged much since I have been so busy trying to get every detail covered and get a solution in route for school and Kahlai.

I am tired. I don't really sleep. I catch myself waking up every hour or 30 minutes... don't know why.. just do. So now I am tired and can't get caught up on rest... Im sure that I will soon.. in the mean time, I think i have become resistant to caffiene. Rock Stars, Monster drinks, coffee and my favorite.... Tea. All of these I try.. All of these fail and I just plop down on the couch or on the bed and begin to wonder why I feel filled with lead.

"You are going through a lot Angelique"... and just when i think this makes sense, I still don't know why my energy level is off. I have been trying to get my mind off of things... hoping to come back home and feel "rejuvenated" "refreshed" and " a better mommy" according to some people and their opinions of what would be "good" for me.

I am afraid to report that i am emotionally spent... however, I can still cry occasionally... not out of sadness.. not sure why i cry.. just do.

On a positive note.. Kahlai is doing better.. his seizures are decreasing and he is remembering things like how to spell his name and colors. He is THE DEFINITION of a handful... I guess this is good... lol. I think I said that I would give anything to have my boy back.. well.. praise God he is pretty much back.. however, he is still different... very different and we are both trying to find ways of embracing these changes.

I'll try to write more later,

Angelique

Thursday, February 12, 2009

A prayer request.. If it's not to much to ask.


So I have a huge list of things to do.. I am beginning to feel a bit overwealmed and much like this could take me forever. Applying for benefits for Kahlai to get him the care he needs.. and trying to temporarily find him a daycare provider while I finish out the semester and until we can get approved for a nanny-type person to watch him and teach him (someone who is familiar with his condition). I have been searching for scholarships and other financial resources to help with the increase in financial need having a child with a disability... so far my friend Michelle has been such a tremendous help!!!!! I would be lost with out her! She has flooded my inbox with a constant flow of places to check out... and I am very grateful... and at the same time... realizing that I have some work in front of me. So speaking of work... i haven't had the ability to do homework in a while... ability.. not motivation...


I have (well had) two computers... a new laptop I recieved as part of my scholarship from Helping Hands for Single Moms (awesome).... the other I purchased very used and cheap from my sister because I had to have a windows XP computer to load the CAD program for my class so I can do work from home. Well, the laptop has been shipped off from Best Buy to get fixed since the 5th of january... and the other one is officially FRIED! It won't boot up it just makes a clicking sound! I haven't been able to do my work from home since the beginning of the semester, then with Kahlai's stay in the hospital, that set me back.. so i need some prayer that I can find a CHEAP solution to fix the computer with the XP in it so that I can get back on track with my homework. I have been borrowing a computer to get online and am extremely grateful for to have at least online access. THANK YOU! But I need to be able to do my homework.


Also, Kahlai fights me every time he has to take his meds. He is taking the sprinkle caps so I have to open the capsules, pour the sprinkles in something like applesauce or yogurt... or jam.. or anything I think he would swallow! Well, I have to have him near me at all times... so he has seen me prepare the meds.. so he won't take it. Sometimes I get him to open his mouth... then he won't swallow... or I have to pry his mouth open.. and he spits it out... either way we both end up extremely frusterated and the end result is that he is not getting his full dose and therefore, we will not be able to see a change in his seizures if he isn't going to wake the meds! Right now he is on one pill three times a day... we will eventually get to 8 pills a day! So if you have some creative ways i could try to get him to take his meds.. please let me know or at least pray with me that he will start to take them and if it's not too much to ask Lord, would even just swallow the capsule???? lol..


So I am praying that I get some.. no ALL of these schoalrships to go to ASU in the fall. I graduate in May from SCC and just need to feel like I am ready to go with ASU... I'm already a bit intimidated by the changes attending ASU will bring... traffic in the mornings... parking... the workload... the schedule.. ect. Universities just do things different than laid back community colleges I hear... and I just pray i am financially prepared for the increase in TUITION... and BOOKS/GAS/SUPPLIES.


So why am i so concerned about these things now? With the changes in the economy, ASU has cut the enrollement deadline for FALL 09' back to March 1st. Oh yes.. everything by March 1st!


So I had better be ready... and there is just so much to do...


So if you are keeping us in your prayers... i just thought if it's not too much to ask...perhaps you could add a few words...


First things first.. pray for healing for Kahlai.. i have already seen such a great improvement. He is walking and talking better... and he's back to bossing me around all day so I'm sure the rest of it is coming back.. i just know it. So you all are doing a great job! Keep u p the good work!


Could ya pray for a wonderful new childcare provider who is familiar with his condition and possibly has some healthcare background to watch Kahlai four hours a week twice a week while I am in class....

my computer to be fixed so I can do my homework and try to catch up in class....

Kahlai to take his medicine so I can stop trying to bribe him with hotwheels and chocolate ( ok, I know, I know... but he HAS to take it.. still even after bribing.. no luck!)...

and pray for an extra 10 days this month and and extra 4 hours a day till the end of the semester! ( No really.. God can make miracles happen so it's worth a shot! What will you get out of it? 10 days of free auto insurance, rent, 10 free days at the gym.. I'm sure there's a little somthing for everyone.. and who wouldn't want 4 extra hours a day? hmm...)


And if I can sneak one more thing in God, I just need to lose that 10 lbs I gained in the hospital... I seriously cannot go buy new clothes because of my nervous eating habits! So if we could pray this extra weight off of me.. that would be fantastic! I'm not looking to be a supermodel.. just want to fit into ( not stuff into) my clothes again!!! and you just say the word and we will start to pray off those extra pounds for everyone! Geez.. I never thought to pray off the pounds.. perhaps we could start something here folks!


Thanks for all of your help prayer partners! ;)


We will see if it works... if so...I'll be blogging a huge thank you with a picture of Kahlai seizure free.....me wearing something other than some sort of stretch pants on February 38th at 16pm! lol.

Tuesday, February 10, 2009

Come on! Is that all you got? My God is BIGGER than THAT!

So I realize today that even though things have been tough, I just need to put my glad pants on and be happy that things aren't worse!

So I can see things a bit more clearly now. This may seem a bit strange to some of you... but to most I'm sure that it will make some sense...

Okay so God has worked in such a miraculous way in my life over the past two and a half years. There have been struggles, but I have really overcame them with such a peace about most of it that it has only been in the past 6 months that there has been room for the devil to try and slip his works into what I have been faced with.

First the court battle between Kevin and I (which really means nothing now). Then the emotional battle I fought regarding my heart about the situation (which was good because it helped me to be in this place in my heart with Kevin today). Then my car (which by the way is fixed and thank to Helping hands for Single Moms) Then School, and now Kahlai's condition. I would call it unfortunate, and it is, but honestly, I have been shown God's love for me and my son through this experience more so than EVER.

I have to look at the positive side to this. I have always thought that there was a calling for me as a woman and as a mother. I have never been a person with a well of patience and I have prayed for patience for the past five years. Guess God answers because I have no choice but to be patient now. It is alwasy interresting to look back and see what God had planned for you when you thought you had it all planned out.
What Kahlai has is a rare and pretty severe form of epilepsy, but it is not a death sentence. Just because the doctors say that he will be this way, or the internet testifies to a grim future for him, does not mean that he will be any of those things. HE IS GOD'S CHILD. NOT MINE. I am only here to lead him back to God and what kind of service am I doing for my child if I do not put this in God's hands and just show the world what God can do? No matter what side effects the the medication, Kevin and I will love him. No matter what obstacles in health we are faced with, we will just have to embrace it and pray over them. Kevin and i have agreed to take some counseling together for parents with kids with epilepsy. I am very happy about this as this will be an awesome way for us to face emotions in a healthy way and be able to sort through our plan as an awesome team of parents for our son. I pray that this is exactly how it will be... for what's best for Kahlai and our own sanity.
When Kahlai is older and he is healed... he will hopefully... no he WILL look back on this and he will see the love, support and prayer he was surrounded with. All of your prayers make a difference for him... not just saying it.. but REALLY taking the time to speak this healing over Kahlai.
I would love to host a something like a prayer dinner for Kahlai. I would love to be able to get you prayer partners all together and pray over him. Perhaps i should call my church in the morning and find out if we can do it there. Hmm..

So anyways, last night I went to resolve the issue with my classes online and the financial aid dispute. THEY WITHDREW ME FROM ALL OF MY CLASSES. So I had to go down there and fix it. So i did. It was so nice to get so much support from one of my favorite instructors st SCC today! Just so happens she was doing her day in the advising center today and guess who got to receive her assistance? That's right.. ME!
She was able to help me with my petition for graduation and help me resolve my issue in getting back into classes. So i walked away from school today feeling like I had overcome that obstacle and could focus on the rest...
Then i get home and see an email that the class that i enrolled in today IS CANCELLED!!! OH MY WORD! So before I got upset... I just thought to myself.. Devil Is that ALL YOU GOT? That is so fixable and I am not going to let this get me down. Tomorrow i will find another class.
My son is going to be healed.
I am going to graduate in may with TWO DEGREES with honors and my son will be there to watch mommy!
I am going to ASU.
I am going to give all of this to God and try very hard each day to wake up with a smile on my face knowing that life is about the journey, not the destination. So if I am going to be throwing myself and Kahlai and pity party the whole way... then we are wasting precious time. This life was meant for so much more than misery.

Sure there are going to be struggles... but there are so many more resources and joys to be discovered. I have been researching support groups for Kahlai's condition. Other parents who can talk about this and help each other to lift spirits and discover new joys every day. I'm not perfect, nor will i ever claim to be. But with this many people supporting my son through this.. i can't imagine that there is room for sadness... just need to reserve more time to discover solutions.

After all, Kahlai doesn't wake up sad. He doesn't have 40 seizures and mope around about it... he is still such a joy and just keeps on one step at a time... and today he did it with a few temper tantrums and a thousand smiles with hours of laughter to linger through my heart. I have missed him and for the first time today, I felt like he is my Kahlai again. As crazy as it sounds... I was kind of happy to battle the temper tantrums today! I welcomed the "that's Mine!"s and the "NO!"s and the moments when he wanted to wrestle mommy until I "tapped out". He thinks things are funny again and even is making up new things to be silly about. It's a bit different being that he will be very involved in something and then seize.. then we take a minute to get back into the swing of things and we move on. I tickled him today until he said stop... and today instead of burning the bacon, I gave myself a nasty burn on my palm! ( it's my right hand so it's fun to drive my manual car now). lol. But with everything I was faced with this morning, I didn't melt down. I felt stupid for grabbing that pan today... but I laughed about it within 30 minutes (after my mom got me all bandaged up :)
So that's what I am here for... a mommy.. to make it all feel better.. and since i can't bandage him up.. i can surround him with God's love.
I am so grateful for all of you who are praying for Kahlai. I just know that together we will all have an awesome testimony about the power of prayer.

Monday, February 9, 2009

Here come the clouds...




So after I post the last blog... right after i claim sunshine.... the clouds rolled in.. I mean literally.. after I claim that the sun chines brighter today... it started to rain both literally and emotionally.


Perhaps Van Gogh was thinking this exact same thing when he painted Starry night. Perhaps it is the darkness rolling in over twinkles of promises of a new day to come....because today i could have sworn at one point in time that it felt just like that.


I have realized that I need help. A LOT OF HELP. I no longer have a daycare provider ... so I can't go to school now... or at least that is what is on my plate. I feel guilty for even trying to go to school, but I know that I have to be able to do something that will give me some mental relief, even though it doesn't seem like having homework would be relief... doing homework would be a mental break from being constantly tormented by people regarding my son... or what is going to happen.


And let's be honest here, Kahlai has been my focus all this time going through school!!!! He is the reason I strive to do so well!!! He is the reason why I try so dang hard to be so accomplished!!! i don't feel that just because he is ill now that I should have to give up my dream of being an accomplished woman... and being able to provide a better life for him.


Well, I see now that his dad saw the bigger picture... all this time I was blinded, but he saw it as clear as day. He saw the avenue of which he could use to try and make me fail. I don't like to think bad things of any one's intent, but I do not feel in my heart of hearts that we are on the same side here... be it emotionally or spiritually.


While in the hospital, i didn't realize really what was happening. I couldn't really see what was going on on the outside until i got home. My first day home with my disabled child and i realize that my whole life has just been flipped upside down.

I cannot cook and let him play... instead the bacon burned this morning because I have to keep my eyes on him every second.

I couldn't get my paperwork turned in to get some assistance paying for all of these bills... Kevin has insurance... but my financial aid doesn't cover "in case your child develops epilepsy"

My school is suddenly asking for me to repay my grant! I have to find a new class to enroll in.. and it is already almost a month into the semester.. it should be illegal for them to do this to me!!!!

Now that they have made it difficult for me to go to school, I have no one to watch Kahlai anyway so I am melting down at this point. I can't blame her for not wanting to. I would be very nervous watching him too if I knew that I had other kids to take care of. Kahlai needs one on one care... someone who can just be at his side all day... and not doing anything else.

His dad has I guess decided that on top of all of this, he is going to make me feel like a selfish jerk for wanting to continue on in school. Sure, he gets to continue on with work, the only way he is effected is emotionally... he gets to cry on his girlfriend's shoulder... get all of the emotional support he needs and then have all the time in the world to research on the Internet and make me feel like a bad mom for not having the time to do any of that!!!!!


AAAAHHHHHHHHHH!!!!!!!!!!!!!!!!! i just want to scream and cry ALL OF THE TIME RIGHT NOW!


This after noon Kahlai head butted me in the nose and gave me a bloody nose... awesome.

Then i talk to my friend Michelle who is very familiar with what I am going through because she has had MORE challenges with her son than I could imagine...

She encourages me, offers to help and I think.. How the heck can you help anyone else? I could not imagine trying to help someone right now... my mom asked me to do her a favor this morning and just when I thought it would be no big deal (because it shouldn't be)... i instantly felt overealmed!!! I just can't help anyone!!! She is an angel and offered to make phone calls for me... offered to get some things organized and some resources available to me. i didn't know there were people like her on this earth.I have never in my life had anyone just jump up in my life and barely knowing me, do SO MUCH for me... sooo much! I'm sure that it's not that other people wouldn't want to, it's that she already is on the inside track with all of the epilepsy resources and sort of knows what my options are.......Thank you Michelle.


So she gives me some things to do, and some encouragement. It feels good to talk to someone that has and IS going through this and more! At the same time I find her to be absolutely amazing for finding the time to help me.


I can't believe my solid ray of optimism this morning turned into a hedge of depression by the end of the day... sounds like God woke me up with a promise this morning and the Devil is trying his best to stop it.


Well, i must say, he is doing a good job at it because I melted down... I don't think I've cried this hard yet since I found out about my son's condition... and i hear that it's okay for us moms to let go and be human every now and then... I guess I'll hang up my pretend cape and just be me tonight...and perhaps I should just pray for hours... because i think that God and I need to have a little talk about not giving me more than i can handle... I'm just not sure that I am cut out for all of this.. perhaps he could cut me some slack?



The sun shines Brighter today




I don't know what it is about being home, but it seems as thought the sun is actually shining brighter today just because we are. I was soo tired yesterday that I couldn't really blog much about what the docs had to say. So here it goes:




Dr. Williams said that kahlai has something called Doose Disease. He showed some "drop" attacks while being monitored and has three different kind of seizures.. Myoclonic, General ( where he sometimes has focal seizures) and Absence seizures (where he just mentally checks out and stares off).




The Absence seizures are very interresting. He sometimes looks around the room and even looks as thought he is responding to you... but he is not. He acts sometimes totally normal, but you can just tell in his eyes that there is something... different.




Many of these seizures we did not even know where going on.. I felt so bad one time when I saw the video and the eeg together.... I was feeding him dinner and he began a seizure... i kept trying to make him take a bite because he's not eating well these days... he was actively seizing! Another time I was on the phone with someone and he was on the ned next to me... just seizing and I had no clue!




The pictures above are the teletubbie hat he wore for the monitoring! He couldn't WAIT to get it off! That hat and the IV... he is so glad to have some mobile freedom! He is still a bit unstable walking around and stuff, but he has just made a HUGE change from being in the hospital!




He is talking WAAAy more and making much more sense!!!




He has a TON of energy!




He even started going around the room and saying MINE MINE MINE.. so I feel like my boy is coming back..




This morning he started bossing me around so i want to thank you all!!!




It is soo good to feel like my boy is coming back!!!!




WHOO HOO!




I'll take it all! Temper tantrums... bossing me around... deciding that whatever he wants to do is what we are going to do... and all of that three year old stuff!




i was soo sad to think that I wouldn't have these moments again.. but with your prayers... and a reduction in the topomax, I think that Kahlai is going to be a healthy boy.




We haven't increased his meds yet... but I hope we won't have to.




Yes he isn't 100% back to normal... but I have so much faith and hope that he will return to.. well.. normal (whatever normal is for him.)




i understand that there are more people than i realize praying for Kahlai... most of them people that I have never met. I just want to say THANK YOU.




Thank you soo much for keeping Kahlai in your prayers. It means more than you know that all of you have shared his story with others and that he has been so loved and cared for without any recognition... just as a random act of kindness and concern.




Feels good to be so cared about.




Thanks.

Sunday, February 8, 2009

aHHH! WE ARE HOME!!!!

So we got to come home today. The doc said that we could try to do a tritration of the depakote and a taper of the topomax from home. They were not able to decrease his seizures there at the hospital.. this is something that might take a while to do. They did, however, educate us on what kind of seizres he has... and helped us to better understand what are seizures and side effects to the medication. So it feels good to be home... but I feel like I left wit one child and returned with another. I miss my baby sooo much... I hope this is all just a phase and as crasy as it sounds... I hope I get hime back.. three year old trantrums and all!

Tonight has already been quite eventful. Kahlai did not keep his dinner down and there were not nurses tonight to just come clean it up... no sir.. I had to grab the carpet shampooer and do the job myself.... YUCK! So after I got it and me cleaned up i had to realize how blessed we are to be living with my mom. I will need help... tonight was a perfect example of that... I just can't let him self entertain or play by himself anymore... he has to have consant supervision. He can't really walk around by himself any more either... when we got home he was walking around and just fell back.. so things have changed by a lot... but I know that God will give me the strength to carry this through.

I'll write more tomorrow... Good night!

Saturday, February 7, 2009

I am really missing Home

Tonight we are monitoring Kahlai... he looks like a teletubbie with this little get up on... I'll try to post a pic of it tomorrow... it's pretty silly looking.

So I am missing home. I miss all of the comforts of home. These days couped up in a room is wearing on both Kevin and I. What once was a fear and extreme concern for our child has turned into a bit of bickering and "old stuff". I am glad that we are not fighting the way we were when we were actively in court.. we still have another hearing coming up but it has been nice not to even talk about a lot of that stuff. Sure it comes up every now and then... and is very akward when I have to explain to the hospital staff that we are not married and ask questions pertaining to Kahlai being split between two homes. I have to say that the thought of being away from him when it is Kevin's time breaks my heart. To think about how much he needs both of us around for comfort right now and how bad he freaks out sometimes when I am not around... just makes me sad to imagine. I know that Kevin is probably thinking the same thing and doesn't want to be away from him, however I have my own thoughts regarding that.

As thoughts drift in between moments of chaos around here i find my self being brought back into reality with gentle yet firm acts of truth. I am thankful for them as times like these can be hard to emotionally reason through.

Of course, since he is hooked up to a machine now... he is not showing the docs all the different kinds of seizures he has been having. It's okay because there have already been at least 10-12 different docs who have witnessed all of these episodes first hand so we do not have to speak the medical language to discribe them... they are already noted and the time... however, we are trying to find out if they are actual seizures as many claim them to be, or if in fact they could be just side effects to the medication that he has been on.

So we missed the cafeteria when they were open.. they close at 7pm and open back up at 10... a perfect time to eat your dinner! HA! I will have to buy new clothes when I et out of here... stretch pants and breakfast shakes HERE I COME!

No.. i'm not kidding... the optemologist actually asked me when i was goin gto deliver...!!!! I told him I wasn't pregnant and then wanted to fall apart... so let's just say that was a little rough on my confidence... i don't even know why I'm telling you all this, but it is been in my bag of bad feelings so hopefully I can go emotioanlly eat tonight one more time and then feel better about it.. lol.

ok.. perhaps i can write more later.. or just try to get some sleep.

A smile goes a long way.




So I have to report the power of all of your prayers!!! Yesterday Kahlai woke up in a great mood. He smiled for really what seemed like the first time this week. Kahlai has really enjoyed having mommy and daddy around. It was so funny to see how things unfolded yesterday.
1. My sister sends me a text msg to tell me that she prayed for a miracle to happen today and she claimed an amazing day for Kahlai.
2. Amy stopped by and it was so good to have some girl talk and see Kahlai responding to a new familiar face around here... he has had a bit of an issue remembering people... but we are quite sure he remembers Amy.... after all.. he used to ask to go to her house... not to play with Trey and Tyson.. just to see Amy! lol. She was not emotionally attached to the diagnosis for kahlai. That was refreshing to be around... I think Kahlai responded to Amy's fresh vibes too.. she had such a calming energy that was soothing... and most importantly encouraging to me.
3. We got a new nurse and upon meeting her she said that she heard we were frusterated and told us that she was very anry.. and SHE WAS!
4. Kevin was feeding Kahlai his lunch and he started smiling and playing back with his dad today! i had to take a picture because I don't get to see that happy face very often these days.
5. My mom and sister came by and my sister brought Kahlai over an awesome care package of goodies.... a lightning McQueen blanket and pillow... McQueen Socks... and a new Thomas the train set... He loves both Thomas the train and Lightnin McQueen!!! He is seriously attached to this blanket now and for the first time is willing to keep his socks on! He was laughing with my mom and was just so excited to play.
6. Grandma and Grandpa Williams came over and brought a HUGE care package from Auntie Trice.. she is always very thoughtful and now with all of the stuff that my family and Kevin's family have brought for us to "survive" (lol)... we look as if we have officially moved in!
No seriously, we have food, clothes, an arrangement of toiletries now... drinks.... magazines... and a huge bag of toys for kahlai.... we are so LOVED! I can't tell you how good it feels to be so warmly supported by everyone.. even though I can't text back or return phone calls... or emails sometimes.... just to know that people read our blog and are following and supporting us the whole way really means more than you think... HONESTLY>
7. We met with our new epileptologist yesterday and we are SUCH FANS of his plan of action on Kahlai's condition!!!! YAY! WHOO HOO!!!!
So we are going to try and ween him off the Topomax... and find a theraputic dose of Depakote to start to control his seizures... without as many behavioral changes.
We are going to try to get a hold on his reaction to the meds and decrease his seizures. This doc said we can start inpatient and not have to stay in the hospital if it goes well.. we can continue as outpatient.. SO WE MIGHT GO HOME SOON! YAY!
In a hurry, he had us moved down to the neurology unit last night and today we start the monitoring for the first 24 hours. We may be able to go home tomorrow... we may not... just depends on how Kahlai is doing and what kind of seizure activity they are able to see in this next 24 hours. He is having 8 different episodes. 5 of them are confirmed seizures... the other three will will be able to confirm through the monitoring whether o rnot they are seizures or just a long lasting side effect to all of the meds he is taking. Yesterday he had 55 seizures..
i just want to let you all know that we appreciate you for keeping us in your prayers... THEY ARE WORKING!!! So keep up he good work!!
KAHLAI WILL BE HEALED IN JESUS NAME... it is up to us to claim that for him... I pray a recieving prayer... and every action that I have I make sure to claim it in a healing way.... many might think that it is hogwash... but i don't care... watch my son be healed and you will be a believer... I'm sure of it.
You all are wonderful. Kahlai can't have visitors while he is on the monitoring unit, but as soon as we know whether or not he will be in a room where he can have visitors, I will let you all know.
Also, he has RSV so it's important not to spread that around until he is rid of the illness... or risk of infecting anyone else.. POOR BABY!
So.. they are coming soo to hook him up to the machine... another 22 electrodes and a cool gauze hat!
I'll blog later today to let you know how that is going. We are pretty confined to logging and monitoring for the next 24 hours... so i will have brief moments to be able to blog...
To be continued....

Friday, February 6, 2009

One long night leads into one long day

So after I blogged last night... Kahlai feel into what i was told is an Absence seizure for over an hour... actually was an hour a half... one for an hour, then a couple minutes he responded to me, then another 15 minutes, then responded, then 10 and he passed out.

I was so frustrated about the pedia sure and the exhausting day that I just put the side rails up and watched him this time. The absence seizures aren't scary for him, he is very content and it almost seems as though he is PURPOSEFULLY ignoring you. I swear as I watched him last night, he reminded me so much of a grown man tuning out his mother and his significant other! lol.

He would just look around... it was like he could NOT hear me. I called his name and asked him questions for 45 minutes. I called the nurse, she flashed a light in his eyes and around the room like a disco ball and he did not even respond to the light. He was checked out of this world and into some place that must have been more entertaining because he started talk ing to himself. He was mumbling something I could not understand, but nonetheless was communicating with people and laughing. I will just call them ANGELS.... and hope that these absence seizures were brought on to give his mind a rest from the more painful or scary seizures he has been having.

So I talked to the mom next to me until after midnight last night.. we talked about this and that and it was nice to just talk about something else after having a melt down. I will stay strong but I must tell you... it is not easy to fall apart when your child is.... well.... no longer acting like your baby... but of something else... or someone else.

I miss Him! I miss his laugh and his silly nature, his little games he would play and dare I say it.... I miss his energy!

So we did not get ANY sleep last night. I was so frustrated and we could not figure out why he would not sleep. Woke up at 3am (not too long after his dad got here...hmm) and had the hardest time getting comfortable. Just when i thought he was comfortable, he would be so tangled up in his IV cords!

Today i am tired.. and today is the shift change so we are being assigned a new neurologist.... Dr. Williams... so far Kevin seems to think it's a good fit! lol... silliness.

So we are not sure what will happen next. We just have to sit here and wait some more to hear what the new epileptologist's course of action will be.... and then go with that I suppose.

Somewhere in my heart of hearts I wish we would have taken him to St. Joe's ER to begin with on Sunday.... I just still don't feel right about that. Oh well, we are here now and hopefully we can get some sleep.

God Bless you for reading my really long and emotional blogs... Here's a BIG HUG AND KISS FOR YOU!

RRRRRRAHHH!!!!!!!
MMMMMWAH!

I'll post later tonight about what the new doc says he wants to do about Kahlai.... but for now I'm gonna wait for Amy... have some girl talk and some much needed coffee... and then nap as much as I can today.

Thursday, February 5, 2009

What kind of mother am I?

So as if Kahlai didn't have a hard enough time today... with a spinal tap, a hearing test, being restrained for an eye exam (which had to be rescheduled) and all of the pokes here and about 25 different faces he's had up in HIS face today......

I decided to give him a bath. He can't really stand on his own right now as he has absolutely no balance, and very little strength (execpt for when he is getting an IVchanged or blood drawn... then all of a sudden he has SUPER strength!). So I wrap uo his IV getup in a bag and tape it all over... thought I did a pretty smooth job and was very proud of myself.... after feeling so stifled of my motherly instincts, I felt like a Dr. Mom again.. problem solving to make my little one feel better. I had the nurses bring in this extremely oversized baby bath and Kahlai fit nicely in it... so I make him a bubble bath... he looked so relaxed.. I mean for the first time I felt so good as a mommy that I actually was able to to do something for him that brought him some comfort other than just hold him... and in a second that joy was gone!


The night quickly declined when I saw water in his baggie that was supposed to PROTECT his IV!!!!! I instantly knew we would have to redo it... it was soaked... and I ( as strong as I have been these past couple of days...) just about fell apart... just about but told myself not to be a baby.

So I got him ready for bed... or better said.. relaxed and waiting for the team of nurses to come in, help me restrain him for the 4th time to redo his IV.. AHHH!H!H!HH!HH!H!

So after that trauma was over... we chilled out for a while.. then I realized.. we ordered our dinner at 6:15. So much had happened that I lost track of time. At 8:30 I was like " where the heck is your dinner Kahlai"? So I asked the nurse..

So they didn't bring it.. instead they gave us not even HALF of what we ordered.. so everything that Kahlai wouldn't want that I would be trying to get him to eat.. and none of the things that I ordered to get him to eat those things.. they brought the sour cream and butter.. no roll and baked potato.. you know... stuff like that.

So then I gave him a fish stick.. he had a seizure so he couldn't finish it.. tried a piece of bread when I thought he was alert.. no luck. so a few minutes later I stuck te straw in his mouth with a desparate attempt to get him to drink the pedia sure....

He drank it! YAY! I again started to feel that as a mother I had made some prgress with my son... until he held a mouth ful and wouldn't swallow.... only to about 3 minutes later... SPIT IT OUT ALL OVER THE BED, HIMSELF, and the BRAND NEW IV DRESSING!!!

Oh no.... I am NOT joking...

So here we go again... I am tired... and I am trying so hard to be strong... but i fell apart... I had to for the first time, just sit on the side of the bed and watch him with the rails up..

What kind of mother am I!!?!?!?!?

I'm not supposed to be fed up! Not this soon! I feel like a failure at this already!!!!! I'm just going to pray for more patience... and hope that we find a solution.. I can't tel lyou how hard it is to sit there and watch your child have seizre after seizure... then hallucinate and talkto people that aren't there... perhaps they are angels.... perhaps they are hoping i get my act together and shape up.

Perhaps I need to just pray... and be honest with how I feel right now instead of trying to be strong for everyone around me...

Perhaps I have no flipping clue what is really going on or how I feel... perhaps I just need to get a clue... this isn't about me... it's about Kahlai.. not about me at all. i am selfish.
What kind of mother am I?

Waiting to Exhale

Kevin and I are sitting in the waiting room waiting for Kahlai to come out of the op room and into te recovery room.... they are checking for Mitochondial disease and menengitus... yes.. menengitus... what a coincidence that the last little girl we had as a neighbor HAD MENENGITUS.!!!

I know Im not spelling it right and I realy don't care right now... blogging is really helping me through this so thank you for reading.

Wednesday, February 4, 2009

Day 9...

So Kahlai so far today has 61 seizures.. sure it's less than yesterday... but lets account for the fact that he slept most of the day today and only had about 5 waking hours total. Poor baby! He is miserable... just miserable.

Tomorrow he will go in for a spinal tap, a hearing test, and a few other tests. He is tired.. exhausted rather and will not eat. In two days he has only seemed to get down a piece of bread, a roll, and a pedia sure... along with one or two bites here and there... certainly not enough to be called nourishment.... he needs to eat.

At this point I am not sure that I am convinced that the care he is getting is the right care.. or that the tests are right... or that they are really doing much. I am starting to lose my faith in the medical profession a little bit... but instead of yelling and crying at them... I just sit and listen and listen to them talk in circles... just beating around the bush in order to fill in a 10 minute time slot so that I feel like I've been "visited" by them... and must have been informed.

AUGH!

Okay okay okay... I will wait for them to research different studies and do thier "jobs" in finding what is wrong with my son. They are currently looking into Mitochondrial disease and testing for infections like meningitus.

I'm going to bed... Kahlai has a dose of meds in 45 minutes... we will have to wake him up... you have no idea how hard that is... to wake up someone who is post-ictal.... it's like they are "not home".. no lights on.... just breath... and then a cranky boy who refuses the meds when we finally do get him up... boy this is special.

To be continued.....

You have GOT to be frikkin kidding me!!!!!

Just when you think that we should be at the bottom of things getting worse... they DO! Augh!
Kahlai has been diagnosed with RVS as well! So now we had to move rooms, be put in a room with another kid that is being hospitalized for RSV and Kahlai ended up getting a NEW IV in his arm.. Poor baby! He is asleep right now. He has begun to have the post-ictal phase after his seizures. yesterday he was pretty much out of it, they gave him some adavan(Sp?) and he perked right up.

The doctors think that Kahlai has so many seizures that he doesn't get the chance to go post-ictal and then return to what they call "baseline". He just goes from having a seizure to post-ictal then back into seizure and has been doing this for over a week now. My poor baby! We brought him here to PCH to get BETTER! He's only gotten WORSE!!!

Isn't any body else praying for him???!?!?! PLEASE GOD HELP MY BABY!!!!

If you are reading this.. please pray for him. PLEASE!!!!!!

If you just don't know how to pray or what to say...Just read this out loud:

Dear Heavenly Father,

We come to you today Lord to ask you for healing for Kahlai Williams. Father God we plead the blood of Jesus over Kahlai and ask that you place a hedge of protection over him. Father we ask that you heal Kahlai in the name of Jesus and we recieve that healing over him and thank you Lord for that Healing. We come to you because we know that you are a God of miracles and that all things are possible through you. Please heal Kahlai Williams please heal him in Jesus name. Amen.

I don't know if that is the right things to pray for, I'm sure that there are people out there that can pray a more specific prayer, but this prayer can't hurt.. please pray for my baby.

I have watched him digress so much in the past couple of days... he can't say his ABC's anymore... can't even walk right now.... he capped off at 85 seizures yesterday.

I can't ype much but I will try to keep you all as up to date as I can.

Thank you for all of your love and support.

Angelique.

Tuesday, February 3, 2009

So here we are...

We have been in the hospital since sunday... and we will be here a while. I'll have to make this brief but anted to give an update. Kahlai's condition has worsened. He is having over 4 kinds of seizures now and we are doing all that we (the medical profession and I as the nagging mother) can do. I;ll be in touch as I can.

Sunday, February 1, 2009

Here we go...

So Kahlai started taking his meds Friday night. He has vomitted every time he has taken his meds and so I am pretty sure that his body is rejecting them. We have tried to give him his meds with different foods... before dinner.. after dinner... blah blah.. but honestly, he has had no appetite really not to mention that we are transitioning him quickly to the modified atkins diet so he is not getting many carbs and a lot more fats. I, however, have not changed from the foods he typically eats. He developed a cough on Friday and by now he is pretty sick. He is lathargic acting and extremely emotional. He cries and wants to be held often and right now smells like vomit.. ewww. He is refusing to take a bath.. I came over to his dad's during his nap now that he is woken up.....I want him to smell fresh... so I'll give him a few minutes and try again. Poor baby, he just doesn't feel good. He doesn't look like he does either. I can't wait until he starts to feel better.. that way i can make some sense of his symptoms.

I bought some strips today so that we can test his keytones. We just did and he is currently at around a 60 we think. We just realized that we are not health care professionals and need to wait for the go on this stuf. I am afraid to do something regarding this diet and make things worse so I will just keep feeding him low carbs, high fat and not worry about getting him to a target level of keytosis... I'll call tomorrow about his vomitting... and will just continue to pray for my little guy... feel free to pray for him too.

I'll keep you updated...

Thanks for your support.

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.