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.