Wednesday, May 30, 2007

Get Well Soon

To both my sweet baby's:
myspace layouts, myspace codes, glitter graphics

My goodness what a week this has been! Sorry I haven't updated in a while but as you see by the get well we have been quite busy! It all started last week with Caleb coming home from school Thursday saying he had been coughing all day well honestly I thought nothing of it I mean I have had a cough for 4 weeks now that is starting to drive me batty, so I thought his too was just allergies! Well we came home and he went outside with his daddy only for him to return in 2 minutes later rolling on the floor saying he couldn't breath and started with a heavy deep chested cough. So I picked up the phone and called the Ped and he had us in 10 minutes later.

They ran a strep test since its going around it came back negative, they ran this cause Caleb said his throat hurt but to a 5 year old everything hurts when they get sick. Any who that came back negative so he says well Caleb lets take a listen to ya! He listened then The Ped said "Take a Big deep breath" well again to a 5 year old what does that mean, so Caleb would just do the thing you know when they get upset or they don't get there way they go huuuuuh breathing out!
myspace layouts, myspace codes, glitter graphics

So the Ped had to give him a lesson on how to take a deep breath in and hold it and then breath out! Well after the breathing lesson... the Peds says "He has pneumonia in his Right lung"! OK this is where I about fell out of my chair, I was not expecting that I mean gosh the kid just started coughing that very day! My poor little boy has coughed and coughed I'm wondering if he even has that lung anymore..But here almost a week later he is doing fantastic no more coughing even though he has 4 more days of taking the antibiotic. And You know I still cant help but laugh everytime I picture the Ped trying to teach my boy how to breath/take deep breaths....LOL!

Well I had to go and open my mouth that very day and say to the nurse that I cant believe it wasn't Cami that I was bringing in and they agreed!!!! Well lets just say I jinxed it cause that very next day 4am Friday morning to be exact Cameran woke up fussing which isn't uncommon but it sounded different. When I got her out of her bed she was burning up and I mean whole body and she was having a shiver/jerk movement. I checked her temp it was 104.6 this is the time when I just freaked out, why is she running such a high temp she has no symptoms. Well we give her Motrin and a cold rag on her head and we are back to bed. Well they are I'm leaning over her watching her every move hoping a seizure doesn't peek in on us! For those who don't know much about seizures I'll tell you that anytime these kids get sick it lowers their threshold meaning seizures!!!! That's all I needed was another worry set to her problems!
Well this temp went on and on with no symptoms we alternated her Motrin and Tylenol every 4 hours all day but her temp would never get down past 101. So we just watched her Friday and after a long night of 104-105 temps we called the Peds office 1st thing on Saturday so they got us in and ran some test...Strep-Negative, Urine-Negative(they did this since she has a history of UTI), Then they ran blood it came back showing viral saying 5-12 is normal hers was 4.9 so no biggy!) But as you may know there is nothing they can do for Viral it just has to run its course!

He also mentioned her Platelets being low he says 180 is normal hers is 100 which is low but is up from her last blood test it was 80 then. What this means is bruising easily other than that I don't know much about it. He just told us 40 is really low and it would consist of her bruising even more than her norm which already is alot and then having purple spots on her gums. So he says for us to watch for this.
Well after an hour we where sent on our way he told us we could alternate the Motrin and Tylenol every 3 hours since her temp wasn't staying down and that if she was still running it by Tuesday to come back in. Well in fact she did run it all Holiday weekend into Tuesday so we where back to the Dr.s Tuesday morning. This time when wee returned she had a horrible rash on her arms, back, neck, belly and face that started late Monday afternoon. Her eyelids where puffy, eyes red she wasn't eating or drinking but again no other symptoms. So he looked her over everything looked fine ears, nose, throat, chest(no pneumonia)! Ran more blood test, she is dehydrated but he didnt want to put her in the hospital said that she should pull out of this fairly soon. He said he has had 5 kids come in with this very same thing. In fact one was just 2 doors down from us. But that little boys illness was a day behind Camerans so he was told he would develop a rash tomorrow like Camerans. What is it you ask, well they don't know...Its new to them a very high fever of 104-105 for days with no symptoms the kids are wiped out no energy sleeps all day, They become dehydrated and then the rash appears the 4th day into it which is exactly what happened to Cami. I asked how many more days of this he said about 24hours.
Well today I'm happy to say my baby girl is looking more alive she is walking around more but still very wobbly, yesterday she would try to walk and just fall to the floor she had no strength! But she is taking more fluids today and wanting to eat, she is till running a low grade temp at night and to me a low grade is anything below 102 hers is 100-101 but runs no temp during the day and when the temps goes up the rash becomes more strange!
Oh and she still remains to be seizure free through all that! It will be 8 weeks on Saturday....Yippeee! Of course no talking or noises right now since she is sick but it will come.
These pics of her sleeping on Monday night when the rash appeared, here you can see it on her face, it looked like she had a huge birth mark on her face! I hated seeing my baby this sick, she slept all day long!

This one was Monday, we sat her in this chair on the front porch and for many they know this huge the girl never sits still! She didnt even have the strength to get up so she just sat there and watched Caleb play.

This one was taken on Saturday her eyes where so heavy!

myspace layouts, myspace codes, glitter graphics

Monday, May 21, 2007

Kid of the week

myspace layouts, myspace codes, glitter graphics

My sweet girl made Special kid of the week at her class at Special Kids! They put up a bulletin board in their main hallway and here is how it turned out!

Super cute huh? I thought it was precious! It listed her favorites, fav color: Purple(well its mommys fav on her), Favorite food: Pizza, Favorite person: Her Brother! Also the great news of her becoming seizure free and a clear EEG!!!!!

Here she is during her OT class. Playing with a ball, pulling rings out of a toy container, and trying to get her to turn pages to a book! With all 3 things she did pretty good, they tried to get her to put the rings back in the container which she had no intrest in doing she wanted to through them all in the floor...Little stinker!

Some of her favorite things to do right now are playing outside she loves the outdoors. Bubbles she would sign "More" all day for those and then there is the Slide she loves to climb up(w/our help of course) and go down the slide(by herself) with the Biggest grin on her face! She is just doing new things everyday her sound she was making last week has already changed into a grunting sound with loud shreaks and she has now added in blowing sounds! Maybe next week it will be a babble, wouldnt that be great!
Oh and one more thing let me know if any of you are expereincing this! Cameran hates clothes, shoes, socks, diapers you name it if it touches her skin she does NOT want it on! I'm guessing it might be a toddler thing but she will not stop taking her clothes off in public. If we are sitting at a restraunt she strips out of her dress or shirt there at the table, shoes and socks had already been kicked off! When we get home she pulls it all off this I do not mind its the diaper I mind. Not sure if it means she is ready for the potty or not! I have set her up there but she just wiggles to get down no intrest at all however she runs that direction when she sees us going! What are your thoughts on this? Cause she threw the biggest fit today when I wouldnt let her take her diaper off she cried for 30 minutes she would take it off and I would put it back on and she would scream at me this went on for an hour back and forth! I'm about to give up but I dont want pee and poop everywhere...LOL! Help, could it be time, does she understand what it means to go potty? I just dont know!
myspace layouts, myspace codes, glitter graphics

Thursday, May 17, 2007

6 weeks seizure free!

Life isn't about waiting for the storm to pass,
Its about getting out there & dancing in the rain!
myspace layouts, myspace codes, glitter graphics

Well another week has passed and still no seizures and what a great feeling that is!
myspace layouts, myspace codes, glitter graphics

Cameran is just doing wonderfully even some new noises coming in. I have to say I become impatient at times as I wait to hear me babys 1st words "Again" I can almost just picture that angelic voice in my head. Saying "Mama" or a sentence "I want milk please" or "Will you play with me" or the big one "I love you"!
She started this week by making a weird whining noise that has turned into a long moan or singing if you will but all monatone! Today I've heard some other sounds in it I just know she is trying to tell me something by the look on her face. Its so hard to describe the sound but its just beautiful.

I havent heard a peep out of her for about 2 months, well since those other seizures kicked in and boy did they do their damage quickly. She was making ma and da sounds and then they exited quickly but that wasnt the 1st time. We have seen many things come and go through the past 2 years and a frusterating 2 that has been but not for me but for my baby! I will always wonder if she knew what was going on because at times it just seemed as though she was so far away, just staring off so doped up on meds and days filled full of seizures! How is one to think? Cameran is still on many meds but she is much more aware so was it the seizures or was it the meds that had her so zoned! Either way I can happily say it is a thing of the past and I hope they never return!!!!
My thoughts and prayers are with the parents and children that struggle with these same everyday things. Our hearts go out to you through the hard and happy times! Hope you all will continue to stop in and check on Cameran we think of you all as family!
myspace layouts, myspace codes, glitter graphics

Monday, May 14, 2007

Gone Fishin`

Cameran is doing great here we are out fishing on Mothers Day!
Photo Sharing and Video Hosting at Photobucket

I had such a great Mothers Day, spending time with my family out on the River for the day fishing was so realxing. Caleb was thrilled, he could not wait to get there and use his new Cars fishing ploe and tackle box that his daddy got him! Cameran was just there for the ride and did fantastic we never heard a fuss out of her! It was just a gorgeous day and the water was so still. A perfect day to catch some fish!!!
Daddy caught 4 fish and Papa 1 so grand total of 5, Caleb was happy that he didnt have to do all the waiting just the reeling when the got a nibble! He thinks that deserves a trophy....So guess you know where we are off to..LOL! He did brave up and touch one of them but then one jumped out of daddys hand and you aint ever seen a boy cut out so fast, tangling fishing lines everywhere!
I put up some slideshows 4 of them(sorry for so many thats the only way it would let me do it) But I didnt want to fit in the hundreds of pics that I caught so I just posted the pics I loved the most and the rest are in the slides! Enjoy!!!
Look at that smile, The girls are gonna be chasing after him, such a sweet boy!

Cami sure made my Mothers Day an extra special one! I cant get over these HUGE smiles she is giving us..I love it!

myspace layouts, myspace codes, glitter graphics

myspace layouts, myspace codes, glitter graphics

Saturday, May 12, 2007

How to live a "Normal" Life!

Could it be our story book ending?
myspace layouts, myspace codes, glitter graphics

Ok so how can I get through this message without tearing up! It has been a very emotional day but in a good way! I have just received the best Mothers Day gift possible!!! We took Cameran to the Neuro yesterday where she had another EEG again I was very nervous of the findings. My stomach was doing nervous flipflops through the whole thing. Everytime she would jump in her sleep I would nervously say how did that read..Well her response was I see NOTHING!!! I said what she said "I dont see anything"!
Could it be?
Well they where able to get us in a little earlier to see the Dr its a good thing because I dont think I could wait for the reults much longer. Its funny because I even remember the smile on his face when he walked in! He said Its

Myspace BackgroundsMyspace CodesMyspace LayoutsMyspace Text Generator, Myspace GraphicsMyspace Text Generator, Myspace GraphicsMyspace Text Generator, Myspace Graphics

I think I had a blank look like What, What did you say? And then he repeated it, Its Normal her EEG came back Normal! Ok now is when the tears of joy came in! But not just from me but from her Daddy as well! Can you believe it we are finally here we reached the Hugest Milestone imaginable!!! These are the words I have been longing for in the past 2 years! Never not once have we ever gone to the Dr. and those words come out of their mouths infact we always came home with some new problem! This is just a miracle, no words can even describe how I feel right now!

The Neuro said her brain waves were not reading slow anymore that they where fast like they should be. So normal what is normal? Where do we go from here I mean how do you live a normal life after 2 years of pure caos! I mean we have had good days in those years but there where days I wondered if she would ever be "Normal"! Would she ever go to school like Caleb, Will she ever talk, Would she ever drive, Will she ever get married or have kids? Things some people never even think of! You know I'm glad that I got to see things from this side it makes you see "The real life" a life that isnt perfect! Getting over emotional when your child learned something so simple as picking up a piece of food with a pincher grasp or eating it at that! Or just having her interact with us gracing us with a smile or laugh that you havent seen in months! Just makes me want to say wake up people enjoy the simple things and be grateful what you do have because it could be much worse!!!

I'm so proud of Cameran she is a strong willed little girl that has much determination to strive for a Normal life! It is just so amazing to me that something so little can have that much strength kinda makes us look like wimps :)
We love you baby girl you keep marching at this pace and you will be caught up in no time!!!!

Oh and one more thing that I was just thrilled at we dont have to go back to the Neuros for 6 MONTHS!!!! It has been every 4-6 weeks for 2 years! They will not be removing any more meds at this time we will leave her be so she can get stable. In 3-6 months depending on how she does we will try weaning the Klonopin again. He says its the most addictive then if that goes well we will discuss the Keppra wean but it will also be a 3-6 month spread of time! So maybe by her 3 rd Birthday she will be soley on Depakote!! Wouldnt that be wonderful! Keep up the prayers guys they are working! She has been seizure free 5 weeks and counting and lets not forget the day she became seizure free on Easter Sunday! Isn't that a blessing!

Ok we are so glad to be done with the Keto diet, I really respect those parents who stick through it! But Cami is so glad to have her food back, here she is with her Favorite....PIZZA!

To all the Moms!
Photo Sharing and Video Hosting at Photobucket