Ready to kick sick in the butt.....

Here we go again Cami is sick again. She woke up Saturday morning the day of her Birthday party running a temp of 102.5. So her party had to be cancelled :(
I took her to the Dr that morning and found out that she had Strep......Ahhhhhh! Can you hear me scream, this is ridiculous! My kids have been so sick this winter and I have no idea why! Why are they catching everything that is going around?

The Dr thought she had the flu and strep but only the strep came back positive....I was relieved but still as he said they both make you feel crumby so atleast she didnt have to deal with both! But man I have never had to cancel a party before and here we where stuck with a cake that feeds 50! I was happy that my mom had made it up to visit so atleast we had a small party....LOL! I'm not even going to attempt a rescheduled party because as sick as my 2 have been the chances of another illness on that day are pretty high! And one of those illnesses probably already got picked up at that Pediatricians office when I took her. There where probably 50 people in there all with the same miserable looking kids as Cami on a Saturday!!!

Cami is on Amoxocillin and is still running the hi temp and she is still refusing food but is atleast drinking! Of course this is all making her sleep at night that much worse. My poor little Cami, Mommy hopes you get to feeling better soon!

I did take a few pics of her "Small" party so enjoy!







Caleb riding beside his sister, showing her the ropes of riding a bike!


We got this for Cami in hopes we could teach her how to ride it will also be some great coordination for her. It has a seat strap now we just need to get some velcro to strap her feet down she doesnt understand to pull her feet up, but with practice she will get it.

Happy....

Valentines Day!


Sorry I forgot to put that up yesterday! Hope everyone had a wonerful Love day! The kids got lots of valentines from school. And Caleb is wearing out the Alvin and the Chipmunks cd we got him, he insisted on listening to it while he went to sleep last night. He loved that movie it was the cutest! At his school they gave out their cards and candys and they also had a party. I have got the cutest picture of Caleb with his new girlfriend Madison, he bought her a pink dog that said Be mine on it. She was so excited she started skipping around the room. Puppy love its the sweetest!

Camis teacher called me yesterday and invited me over for a class party. I walked in and Cami was sitting in her booster seat eating her lunch like a big girl! Got to meet the other moms and their sweet little boys. It was great!

Some new things:
She likes to feed YOU! SO she kept feeding me her goldfish at her party, she thought it was hilarious, such a sweet baby girl. But if you dont eat what she is putting in your mouth she throws a fit so better keep your belly some what empty......LOL! Whatever makes her happy! Her teachers just adore her and are so excited to have a girl in their class. Mr. J got caught off guard today when she started rubbing his ear. We dont know why she does this but its only with males!!!!! And thats with any male she will go up to a complete stranger and rub on his ear......She has done this in the waiting room....Talk about embarrasing! But she will get right up to your ear and rub it and suck her thumb, its hilarious. SO watch out boys!!!
Cameran has also started spitting not sure if its just new to her or if she saw someone doing it but its a cross between raspberries and a spit but she does it to everything, on our dog, us, Caleb, an offer of food, on her food on the tables...Gross baby girl! Also a newbie is rubbing her hands together she likes to wash her hands and loves to put on lotion, she does a good job rubbing it in. And lastly is brushing her teeth, I always brush them for her and then give her back up toothbrush of hers that she loves to chew on. But yesterday she was moving it side to side brushing her own teeth....Way to go Cami!

Oh and one more thing her babbling is getting better lots of new sounds coming in. And she loves to say Mama......Thats my girl!

Heres a pic of Caleb out in our snow the other day. The kids had their first snow day of the year. Ok well it wasnt really anything but it did snow all day long and it was a beautiful sight. We got maybe less than an inch. But the roads where icy and so was our back steps I about lost my tailbone! But I took the kids our for about 10 minutes thats all we could handle it was 22 degrees....Brrrr! Cami just ran her little legs off completely oblivious to the fact of how cold it was or that it was snowing. Caleb on the other hand was thrilled but sad that there wasnt enough to make a BIG snowman. So really all I got was some cute pics so here you go! I love these pictures.

1st Day of School

What a BIG girl! Cami had a great 1st day at preschool! When I took her in I was so nervous but everyone was so nice. I put her things in her cubby and the teacher walked her over and had Cami pull the 1st pic down of the day and thats the potty and she happily walked along with the teacher to the potty and the teacher waved goodbye and said we will see you at 12:30! I walked out and barely made it outside before the tears came running! My baby girl was all grown up and I didnt even get to give her hugs and kisses and she could have cared less, she was happy! Did I mention she is the only girl in the class they have a room full of boys 7 of them, Daddy is gonna have to keep his eye out on that situation....LOL!
It took me 15 minutes to pull myself together in the parking lot and dried it up and headed over to Calebs school to Volunteer, which is right down the road maybe 5 minutes if at that so its great! I needed something to take her being gone off my mind and it worked because Caleb's teacher was swammped with a new student, Valentine makings and such but I kept finding myself looking at the clock and checking my cell making sure I didnt miss anything! I guess it will get easier I just missed her tons!

Well at pick-up time I was of course the 1st mom inside waiting outside her room. Then out they came and Cami had the biggest smile on her face to greet me. Her teacher said she had a GREAT day! Hooray Cami!!!! She said well I took some pics so you could see(thats my kind of teacher) there she was all smiles in the sitting area and then in the painting area painting up a storm. It was the sweetest. She said that she was hand painting and had finished the page so they took it from her and she screamed so they gave her another, they said she really enjoyed it. And by the looks of her clothes I would say so she was a mess! But as long as she had fun thats all that matters. They said she also worked best if they put her in her booster seat, she knew then it meant work time. I'm so proud of her!

And I tell you the good things didnt stop there. I was in the restroom which of course is never alone if you have kids you know what I mean. Anyhow Cami was showing intrest so I asked her if she needed to go potty and she walked over to the potty and raised the lid.....Blew my mind. So I sat her up there and she made the biggest grunting sound and then looked up at me and gave me the hugest sweetest grin like all done! Of course she didnt do anything but she tried. Then I got her up and thought I would ask her if she could flush it and YES my smarty reached over and pushed down the handle then bent over and pulled up her own pants. Ok people no way is the Preschool that dang good....Come on! I couldnt believe this, I mean I have tried the potty many of times with her with no luck. But of course last night we are getting her ready for a bath put her up on the potty she doesnt go we get her down and she squats and pees in the floor! So my question of the day is, Does she understand or not?

Heres a picture of Cami right before I took her to school! I didnt get any of her after that because I was by myself and had to carry her, her backpack, her lunch box, her booster seat and a bag full of class supplies! So a little sad about that so hopefully her teacher will be able to share her pics with me! But here is my BIG girl all ready for her 1st day!

Look whos 3

I can not believe how fast this year has gone by. My baby girl is 3 years old today! Its hard to believe that come Monday Cami will be a Preschooler!

She is done with Early Intervention and will now recieve her OT, PT and ST at her Preschool. We will be starting her out 3 days a week, Monday, Wednesday and Fridays for a few weeks and then start her full time depending how she does. We had her IEP meeting today where we discussed her goals and such so we are good to go.

She has really been making great improvements in her development. Just today I was telling her clean up and singing the song and what does she do.....she crawls over picks up a toy crawls back with it and puts it in the box. SHe did it over and over again,it was funny because every time she dropped a toy in there she would wait for me to praise her. It was so sweet. She is also feeding herself with a fork she will watch me poke it for her and then I will help her and then like a snap of a finger she had it. She does get frusterated with it if she pokes and pokes and nothing gets on it. So she will hold the fork in one hand and with her other hand cram the food in her mouth. Its hilarious and forget me trying to show her how to do it again she thinks she is going to loose the fork!


I'm so sad to see her classes over and see her teachers go that have worked so hard with Cameran for over 2 years. They have all been so wonderful and they will all be dearly missed! Thank you Christy-TIPS, Susan-Speech Therapist, Amber-Physical therapist and Nicole-Occuptional Therapist for all your help. Also Katie and Stephanie at Special Kids for your hard work, I know it was especially hard on you guys while you sat back and watched her have seizures during class, making it harder to work with her.
So to all: You are all like family to us and Cameran loves you so very much. I cant wait for the day she sees you again and she is talking up a storm and is running, jumping, skipping and playing with toys appropriately. You have really helped get her far in her development and I will always be so appreciative for you helping my baby girl!

And let me not forget to mention that is has been almost 10 months since we have seen a seizure. We pray these improvements continue. I cant wait to see what school does for her.

Get well...

I've got to get these kids better. I have lysoled this house down and cloroxed wiped every toy and opened up all the windows this past Monday and Tuesday to air out all the germs...So thank goodness for a few warm days! Hopefully it worked!
Cameran is feeling much better and is over the flu, learned that she picked it up at her Preschool last week during her Observation some of the teachers in that room had it and kids.....ICK! But welcome to the world of school, we experience that enough with Caleb. Who speaking of has been out of school since Tuesday. We thought he had the chicken pox he has some real bad bumps on his bottom. Turned out to be Perianal Strep/Impetigo....uggghhhh! We have no idea where he picked that up at probably from the schools toilet or something! He is on an antibiotic for 10 days, it is very contageious but only if you rub up against it(which no one should be doing) its like a form of staff. But anyhow I have kept him out of school so it doesnt get passed through toilet sitting and such. Oh and lets not forget the lovely med that he is on for it, it makes him sick to his stomach. So every time he gets the med he is running to the bathroom! Could I have any sicker kids???? I'm telling you this is ridiculous. You know what makes me really mad is that parents send their kids to school like this. I know you gotta work but look how many people are put out because of one child. I've heard of a parent who doeses her children up with Tylenol for their temp sends them to school, hoping it gets them through half the day so she doesnt have to take off work all day! Thats just horrible, come on people they are contageious if they are running a temp and up to 24 hours after a temp. Its unbelievable how packed the Dr.s office has been and its careless parents like that of why this is such an outbreak of flu and viruses right now! They just need to shut schools down for a week to flush out all those germs. I'm really hating that I have to take Cami for her 3 year check-up tomorrow fearing we will come out with yet another illness. But with her starting school Monday I guess it makes no difference she is gonna get it there if not from the Doctors office!
Sorry just venting, I'm tired of having sick kids all the time!!!!!
We have been to the Dr 3 times in less than a week. For the Flu-Cami, And Calebs hands and now his bottom and then tomorrow will make 4 visits but thankfully its just a chek-up!
Oh and Calebs hands are much better they are still dry but the bright redness and open wounds are gone. Here are some pics of his hands:






Caleb praying his hands soon get better. Poor little guy says it burns everytime he gets water on them. They gave us Hydrcotisone to put on it 3 times daily and Eucerin and Aquaphor for other times during the day. He had to wear gloves over his hands to keep them moist!


Heres a picture of our sick babies piled on their daddys lap and our dog Daisy is squeezed in there too! I love this picture!

Quick update!

Sorry dont have much time to update! Cami is very sick right now with the Flu and temps reaching 105 took her to the Dr today he said it will last 4-5 days! He put her on Tamiflu, So much for her classes this week, its her last week with Early Intervention, we'll miss all her wonderful teachers!
We also had to make a Dr visit for Caleb on Friday for his little hands that look horrible. He had red hands then it turned into dry patches that started to split all along his knuckles, wrists and inbeteewn his fingers. Looked like he was burned. Dr gave us a RX for hydrocortisone 3xs daily and Eucerion and Aquaphor for Excema and chapped hands. He has to wear gloves until its healed.

The bed is still being processed no more news as of yet we were instructed to give it 15 days.

And last but not least if you noticed the tag at the top of her page in the right corner than you guessed it! Our Big girl will be starting the Special Needs Preschool come next week. We got the warm fuzzies from her teacher! Mommy is very nervous but Cami did great in the observation!

I'll update more when I can!

Love you baby girl, we hope you feel better for your big day!



And to Cami's New York buddies Ben and Connor who share my special day with me!



Have a good one! Muah!

Latest on Bed & Observation....

We rescheduled Camerans preschool Observation for this Wednesday. So I will update about that later this week.

As far as the bed goes I feel like we are making progress but not before I lost it with the Medical Company. I spent all day Friday on the phone with them and insurance trying to get to the bottom of this. At first they told me they cant even order the bed without an approval from the insurance then I have another person telling me they can. I felt like I was getting no where. Then to top it off the City calls me and tells me that they(MC) said I had signed a piece of paper stating that if the insurance didn't cover the bed I would pay for it. I had no memory of signing any papers from them. So I requested it to be faxed. Well there it was me in dis-belief my signature at the bottom of the page with a guy witness. Hummmm I thought the only papers I could think of that I signed that had anything to do with the bed was the delivery papers. Gotcha!!!!! Sneaky rats! I feel like we where misled here I was signing for a delivery and in all actuality I was signing something that I thought was already paid for but would later be charged for!
So first thing this morning I got back on the phone with Insurance again, where I confronted them about their approval letter. As states here: 1 Canopy bed being approved for an order between 1/17/07 to 3/31/07 but states at the bottom that it does not guarantee payment! WHAT? I said how can you approve the bed and let them order it but not pay for it...I'm confused! The woman says I don't know I see where they approved it and then says oh the note here states they needed the Letter of Medical Necessity(which they got). Then she says wait they cant even give approval if they don't see the letter of necessity so they had to have seen it for approval! THANK YOU......awwww I can breath now! My goodness people come on give me a break here! Well she has sent this claim off for an Urgent Review so 15 days.
In the mean time I sent our Neuro an e-mail requesting he call the insurance physician for us and to help out any way possible. He is so wonderful because not long after my e-mail I already had one back from him letting me know he had just spoke with them! He said they approved! So we will see what happens next.....Fingers crossed!

Missed the Observation

Well all this anxiety worked up on the school meeting for Cami and then 4:30 Thursday morning Caleb wakes up with a temp of 102.9 an no other symptoms besides him telling me he had a brain ache...I said a head ache he said "No not my head my brain"....LOL he is so funny. Then come 7:30 he is on the role with a virus that just wiped the little man out! He couldn't keep anything down including meds for the temperature. He was so pale and cried from the belly aches. I called his Pediatrician and they called him some Phenegran that you rub on your wrist to help with his nausea and it did the trick. Thank goodness for that stuff. He ran temp up till 4:30 yesterday so he had to stay home again today! He is back to his old self today still not eating very good though but he will come around. But out of all days it had to be yesterday all these set backs keeps my nerves so worked up! I've sent an e-mail in with them requesting to observe on Monday! SO fingers crossed that no one else comes down with Calebs bug or I'm liable to go crazy of the unknown so close to her transition....Not enough time to prepare! Acckkkkkk

Update on bed

The latest is just as confusing to when we started. Basically what it boils down to is the he said she said game. The Medical company did get an approval from the insurance, they cant order the bed without it. BUT it was a verbal not a letter of approval so the company should have never ordered the bed! But the insurance should have never said they approved it and then deny it. Then then insurance says they don't think it is being used for "Medical Purposes" they think when she has seizures she goes paralyzed.....What? Anyhow the insurance said they requested medical files on Cameran which they never received guess the Medical Company overlooked that! Also the MC(medical company) is dealing with a middle man who they relay stuff to and then they got to our insurance...Its all kinds of confusing. So now the city is looking into the "Middle Man".
Our insurance says we can have our Neuro call and talk with their physician to maybe work this out...MAYBE! BUT a biggy is that currently Cami isn't having seizures.....Will the insurance be able to overlook that...probably not even though the bed was for last year when she was having them.

We got a bill from the MC yesterday for the bed. If the call to the Neuro doesn't work I guess they will just have to come and get the bed. It just feels so overwhelming right now. Don't really know what to do. I want to fight them on this and file an appeal but I just don't have it in me right now. I have enough to deal with Cami soon starting school. Then what happens if this takes a long time and we don't a make a payment it makes our credit go bad. Or if we do make payments till its settled and then we have to fight for the reimbursement of the payments. UGgghhhhhh!

Had a bad day

Sorry about not posting in a while but last week was a little overwhelming for me. Not only am I try to build myself up for Camis transitioning into preschool but we got a phone call from someone who we thought we would never hear from again. Who would that be you might ask? Well it would be a Medical supply company that we got Camerans Pediatric bed through last year. When I saw the caller I.D. I was thinking why in the world they would be calling me. This is when it got bad! Turns out they said they have been fighting our insurance for a year on approving the bed. Mind you they are calling me Jan. 17th the exact day last year that I got an approval from our insurance. Good feeling gone, jaw drop! She continues to say if you cant get your insurance to cove it we will have to bill you.....Are you ready......$5,345.00.....Yes you read right!

In the back of my mind I'm wondering why in the world she waited a year to call and tell me this and then also why in the world they would bring a bed to us let us keep it for a year and it had not been approved! Oh she says sometimes insurance say they approve stuff but they actually don't.......What? I'm now confused!

SO I hang up with her call my husband tell him the situation and he told me to call them back and tell them they can just come pick it up because he isn't paying $6,000.00 for a bed! Then he said no go ahead and call the insurance. So I get on the phone with them and they try to pretend ignorant to the whole situation. Asking me if I still have the approval number they gave me last year for the bed. I kindly said that was a year ago...Then a light came on and I asked them to wait one minute while I pulled out a notebook. Little did they know that I have always kept notebooks of Camerans use to be seizures that where dated with every day notes. Luckily there it was written Jan. 17th of last year and who I even spoke to! Imagine this they where like oh now I see it! Come on people give me a break here.
Well then the woman tells me well I see where we approved it and I also see where we denied it.....What? I didn't even know they could do that! She said we needed a letter of medical necessity which we did from our Neurologist the list just goes on! Anyhow she said they would have to send all this info off to another dept and it could take up to 30 days and to call back next week.
Well that night we decided to pull our claims up off the Internet and there it sat but there were only 2 claims found on the bed. Now remind you the woman I talked with from the Medical supply said they had been fighting them all year for an approval. Well let me tell you why she never called us any earlier and that's because the dates on these claims were for Dec of 07 yes just last month and then 1 filed Jan. 16th of this year the day before the company called me!!!! Sounds to me like our file got lost. Needless to say we have involved the city(Jason works for the city)and they are looking into it, she told us they cant approve something and then deny it..Just doesn't make sense! What a stressful week.




On top of all that drama, Cami will be starting S.N. Preschool in 2 weeks. This is going to be extremely hard on me. I have cried many times of thinking that she will be spending her days at school and not with me. It just doesn't seem fair sometimes, here I got to keep Caleb at home with me till he started K-garten and Cami just feels like she is being ripped from me. Typically when your child starts school you get to walk them in, spend a little time with them, drop by if you like to check in. Well at this school its the opposite! They want to cut it dry, no dropping in, Basically NO PARENTS ALLOWED! Is the way I feel, I understand that its probably better for the kids BUT its so hard on the parents not knowing what they are doing. Its a totally different feeling that I got with Caleb yeah I worry of the everyday dangers of school for him BUT with Cami different surroundings is a danger to her! We know she is safe here at home. I want this badly for her but I cant get that warm gooey feeling about it. Is it because she cant talk or communicate with me if something happens? Is it that I know that there is no way they can keep an eye on her at all times? Or is it that I feel like a failure because I cant do these things on my own with her. Why cant I teach her these things, why cant I be more firm with her! I already know the answer. I want her to be free to do what she wants I mean after all 2.5 years of her life she sat doped up on meds and still had seizures everyday. So I want her to be happy at all times I want her to explore! Whats more upsetting to me is that I know she is gonna cry why she is there because they are going to make her sit and learn more of a structured life. Which will be great but just knowing what she will go through to get there tears me to pieces and not being able to be there to comfort her. So yes I see why they try to push the parents out for that reason but I just wished they would give me one day with her to watch her routine! Reassuring me that it will be ok :(
We do have an Observation tomorrow morning with them so we will see how it goes! So please please keep us in your thoughts!

Trouble Sleeping.....

What a week....and by that I mean of NO sleep! Camerans no sleep is really starting to wear me down, I feel like my body is ready to hit the floor. I have no idea where I find the energy to stay up just a little bit longer.




Last Thursday night was the worst night by far, I don't believe she slept longer than 10 minutes at a time. She was all over the bed flipping and whining then sit up scream at us then we would fight with her to get her to go back to sleep. And imagine this, come 6:30 she was running the floors out and my feet where dragging. How in the world does she keep going like this? You might be saying to yourself well she must get a great nap and that too would be a NO! Man do I wish. If I want her to sleep good I have to hold her and the minute I move she pops up. Or if I just get her down the phone rings waking her and forget that nap she has just now had the best 5 minute cat nap and she is good to go!

This sleeping behavior is only getting worse so I find myself constantly counting down the days till she can have a sleep study done. And I worry of that because any one who has kids know how unpredictable they are. You know, like taking the kids to the Dentist and say oh I just know they are going to scream and then your normally screaming pitching fit child will lay there like a perfect angel and make us look like total dummies! Well I just pray this is not how it goes but our luck would be the night of the study she would have the best sleep of her life!

The earliest they could get us in is mid March and mind you this is just for the Evaluation type deal Dr talking with us about her issues and then they will set up her study which usually takes 2-3 weeks he says! So we are talking another 2.5 months with little to no sleep! I often wonder if she sleeps with her eyes open because for the life of me I just don't know where she gets her energy from....think I need to borrow some!

Now for some more bad news and that is we think she is having seizures in her sleep again. I mentioned this before however I believe its more so true now! The night she was tossing and turning so bad(last Thursday) she did 1 stiffing of her arms again while they raised up and she held it there for about 15-20 seconds....Just like her old ones she did in her sleep. Before we where seeing lots of flinching in her sleep like she also use to do( those kinds read as seizures on her EEG back in Spring last year). I did mention these to her Neuro so we are moving her med around again to see if it helps. If not we might have to add back that weaned off pill or another med. She doesn't do that movement every night, So far I have probably seen 3 of those real stiff ones but we have seen lots of the flinching in her sleep specially when she first falls to sleep. Yeah people flinch in their sleep but when she use to do this when she had the seizures and then became seizure free and we haven't seen any of those for 6 months and then in November we start seeing her do it again it raises a flag. So while we wait for the sleep study we are gonna try to video tape one night of her sleep to see what it shows.

I had voiced a concern last week to her Neuro about how odd it is for her to have theses "movements" only in her sleep and not during the day and his response was not so odd! He said actually its not so uncommon for a child who's seizures come from the frontal lobes to have them more in their sleep. Which in Camerans case would be so true, specially in the last few months of her seizures seemed like she had more in her sleep than during the day.

I took Cameran to the Peditrican Friday to make sure she didn't have anything else going on to cause her to stay awake. Shes had a cough off and on since Christmas but it started sounding kind of croupy again with runny nose. But she came out with just having a head cold. Well go figure that today it looks worse we went though 2 boxes of tissues on her nasty nose and she looks like she doesn't feel good sounds like it too. SO I guess if it gets even worse or comes with a temp we will be back to the Dr.s again! Minus well give them straight access to our bank account.....LOL! Poor gal her little face is so raw from even the lotion tissues. I gave her some Benadryl to help clear it out and maybe help with her sleep as well!

Well that's it for tonight I better head off to bed before she wakes before my head hits the pillow!
Oh one more thing....I did find out about more about her MRI. He answered our questions we had about the Lesion in her Cerebellum. It has NOT grown in size nor has it decreased! So I asked of its size and he said it is smaller than a centimeter. Still unclear of why its their, from birth, seizure????

Cami's MRI and Blood Work results...

Well yesterday went very well she did end up getting the MRI but I have to say leading up to it she was not happy. She did lots of screaming because she was hungry, tired and wanted to run around by herself. So while we waited for her turn back they gave her some nasal spray stuff to relax her and what is suppose to take 5-10 minutes to work took 25 minutes on her, the nurses couldnt believe the fight she was putting up. Little Stinker, they wouldnt even attempt an IV till we got her back in the MRI room. THey had me sit on the MRI Machine table holding her, by this time she was lots more calm, soon as they put that IV in we heard half a cry and she was out like a light..man that stuff is quick! Her scan lasted about 25 minutes then we got to go back and see her again, we couldnt touch her right off cause they wanted her to sleep it off so she wouldnt wake up screaming mad. So after waking she did really well but she ripped off all the stuff they had attatched to her so we gave her some of her fav cereal and some drink to calm her and they watched her for about 15 minutes and then we where on our way home. Simple enough!
I was shocked to have woke this morning and her Neurologist had already e-mailed me her results they are just all so wonderful!

So here is his e-mail with the results:


Results of the tests.

The Depakote level is 86(normal 50-100) so continuing dosing 125AM and 250PM. This might help with sleep and Dr C is setting appt for you in sleep clinic.

MRI- shows myelination is normal-(normal complete myelination/No significant change or new abnormality).

***So just wait for the sleep appt with DR C and they will likely set up overnight sleep study that may be able to capture some events to determine if these are seizures and to help with sleep problems w/ Cameran.

If we don't capture any events and she continues to have the stiffening and raising of the arms(the thrashing about I'm not so worried about) then we can admit her for a few days to the EMU(Epilepsy monitoring unit) to try and capture some events to see if these are seizures.

Let me know when you complete the sleep study and if you need anytyhing else.

rw


The only thing her Neuro recommended was switiching her meds around giving her 2 pills in the p.m. and 1 in the a.m. we were doing the opposite.

Thank you all for thinking of us during this time, as most know it can be so stressful and it helps knowing you have such good family and friends there lending support.

Karen

Happy New Year

Wishing Everyone a.......


Things for the new year:
-We are awaiting Camis MRI appointment which is scheduled for Jan. 3rd to watch her lesion on her Cerebelum.
-February 7th Cami will turn 3 and will transition into a Special Needs Preschool, cant believe how fast she is growing up!
-In April she will be having her sleep study test....We are very anxious for this!
-Also on April 15th will mark her 1 YEAR of being Seizure Free!!!!!!

Heres a few pics of the kids from Christmas, they had a wonderful Holiday! Hope you all did as well!



Caleb with his new skating dog Blade!


Cami with her 1st baby stroller! She pushes this thing every where but does not know how to turn it around so once she runs into something she will just back up till she backs into something and then moves forward again till she finally gets turned around...Its the cutest!

The results....

OK well its not really a full answer but it will have to do! After the 3 hour testing the Dr. came in and says I think she DOES have Autism but I CAN NOT diagnose her with it because of her seizure history! Now let me explain in more detail. For those who are not familiar with the testing they do let me try to describe what they did with her.

Me and Jason where in a small room with Cami with a Dr and an assistant, the main Dr observed through the window. Anyhow it consisted of lots of paper work for Jason and I questions from her eating habits, playing skills, fits, social skills and so forth. While we filled out paper work they did what seems like a simple enough test to kids but for Cami it was not so. First problem they ran into was just getting her to sit still in the chair it was unsuccessful she would not sit longer than 5 SECONDS tops, which for her is not unusual!!! After that fight they just decided to sit her in the floor and have her try to point to a picture. They had 4 different pics on a page and they would ask Cami where the ball was hoping she would point to it, well that was a no, and of course we knew she wouldn't and couldn't do it. Cameran at this time was highly frustrated just 15 minutes into the test she was already screaming at, kicking and hitting the women. So they moved on trying to get her to stack 2 blocks, we know she can do this but she refused to do it for them she picked up the blocks and threw them at the wall this went on for 5 minutes till they moved on. Next came pretend play and of course me and Jason was snickering because we knew what was fixing to happen. Well the woman took the lid off the big Tupperware box and of course Cami wanted to play with the lid but then got her looking in the box. They pulled out different Ziploc bags at a time....The 1st one was a car, airplane, frog and a cup. Cami look what I can do Vroom vrooom on the floor with the car your turn, well Cami took it in hand and ran it across the floor....Yay Cami good girl. Next this is a frog(bouncing it on the floor) boing boing....Camis turn Cami takes it and taps it to the floor a few times and then throws it...Good girl Cami. Next was the airplane.....she flys it in the air...Cami watches then she hands it to her and Cami just throws it(does that count... she made it fly...LOL) and last was a cup. She says look mmmmmmmmm that was a good drink, Does Cami want to try well Cami takes the cup and places it up to her ear she did this over and over.

Next bag she wanted her to pretend play a birthday party, with a baby, napkins, forks, straws for candles. The woman pretends to pass out plates Cami is just throwing them as she gets them and then the woman acts like she strikes a match and lights the candles and Cami reaches for it and she says that's hot don't touch...But Cameran continually tried to pull them out and place them in her mouth. She through Many fits in that session.

Next they just gave her a dump truck, blocks and a hard page book. Cami did put a few things in the truck and push it and then sat down and was looking at the little book flipping through the thick hard pages but while doing this she would keep situating herself until she was no longer facing us but she kept doing it in circles.

They tried many other things where she continued to throw a fit and hit, scream and kick so they just let her be and watch how she played. They just watched her move constantly about the room not playing with anything in particular just moving and destructing everything in sight. While she played alone they asked us another 100 question survey and they went out of the room for about 30 minutes. Then he came back in and gave us the above answers but also mentioned Sensory Disorders. We have been questioning this and after reading some notes from her OT we found out that they say Cameran stays in a constant Sensory seeking mode making it hard for her to concentrate. He definitely thinks she has Sensory issues and as of right now Autism but again cant diagnose her because he is wondering if things will change the more she is seizure free. So he wants to retest her in 1 year to give her time to make the changes if any. So we will just watch her and take in any info given and learn all we can to keep her ahead.

In a little over a month Cami will be turning 3 and will be entering in the Special Needs Preschool here in town, we are to observe another classroom to see how it goes and hopefully it goes well so she can receive all those great services!!!!

Reminders:
She has an upcoming MRI on Jan 3rd checking the lesion in her cerebellum and in April they have set up her Sleep Study! Uggghhhh....That's a long ways away but they said they are BOOKED! Guess we will have to figure out something to make this girl sleep better at night....Mommy and Daddy need their rest.

Christmas is almost here!

Well I finally got all my Christmas shopping done! I tell you I think there had to be a thousand people in one store with all the same thing in mind....Last minute Christmas shopping! We do it every year....Don't ask me why we just do! But I think next year I'm starting in July....The lines where ridiculous! We went out about 9am Saturday morning and everything was smooth sailing no waits hardly a crowd then came 12:00 you could not move in the same store you where in earlier that day! I will never price shop again just get it the 1st time you see it!~ Lesson learned!

Minus the crowds me and the hubby really enjoyed are half day out without the kids it doesn't happen often maybe once or twice a year if that....So it was great!





Caleb and Cami are really geared up for Christmas. Caleb especially since Cami really doesn't understand it all. She just likes to back up and sit on my tree and now that we have gifts under the tree she has showed in interest in ripping the paper off...Little stinker! We took them to see Santa 2 weekends ago and the look on Camis face was priceless....She was very wide eyed and full of giggles! She couldn't wait to go over to see him and lucky for us there was no wait we just walked right up! We let Caleb go 1st so he could give him his letter and let Santa read it so he made sure he understood it....LOL....Dont want to leave anything out! Then came Cami we sat her on his lap and she turned around and gave him the biggest smile then turned and let out a big giggle! It was the cutest.



Other news: We are heading to her next Psych test Wednesday the 19th...It takes 3 hours...Hope she tolerates it! We are leaning more towards Sensory Processing Disorder, she has lots of quirks and lots of sensory issues! So we will see. I will post as soon as we know something!

Some new things!

Ok well I'm way behind and have lots to update everyone on!

First things first and that is her current med. Cami had blood draws for this a few weeks back and I got the results back. Her Depakote level was 130 its suppose to be around 100 so it was elevated. So they took immediate precautions and took her off 1 pill leaving her on 125mg 3x's daily instead of 4 a day. We are watching for any unusual behavior/seizures! So far nothing during the day but at night we are seeing some questionable stuff. Lots of jumping like she use to do when she had seizures in her sleep. BUT we have been noticing this behavior before the wean down, about a week ago is when is started. They are wanting to do a sleep study on her but not until after her Autism test and MRI. The Autism test is on the 7th and 19th of this month and the MRI is set for Jan. 3rd. So not to long to go. Until then I have a call into the Neuro about her sleeping issues. Which right now its terrible! She stays in such a light sleep all night tosses and turns whines....She just isn't getting the sleep she needs. Neither is Mom and Dad!!!!!

~On a more positive note! Cameran is really moving forward this past week. Let me sum it up in a nut shell! The past few weeks its like a door has opened up for her. I've been trying to teach her a new sign every week and she is finally catching on to it. The only thing is she want do her hands for the sign she comes over to me and signs my hands for what she wants. Which is still fantastic, she is communicating with us! Her new signs are "Open" and "On" and man does she use both alot!!!!!!
~Next is that my baby girl has been practicing and practicing on her jumping and I'm happy to say she finally got it on Sunday! She is now a great little jumper its the cutest! She gets a little caught up in it and starts squatting alot trying to remember how you do it and then she'll smile and hop up and start jumping again...We love it!
~This next one has been a working process but this past week she has really mastered the skill of throwing a ball. And cute thing is at PT they will put the ball in her hand and guiding her hand up and down they will count 1, 2. 3 and on 3 they throw it. Well yesterday she was coming to me with her ball in her hand hold it in the air then she would move my arm for 1,2,3 and then she would toss the ball that she had in her hand. It was the funniest thing!
~Babbling, oh my goodness what a little babler queen she has become lots of new sounds all the time. Still saying mamamamam, dadadadadada, bubububububu, today it was nananananana lots of growling and high pitched squeals as well.
~Mimic...THis she has just started within the past few days....She likes to smack her lips and then waits for you to do it back so she can do it again. She also coughs if she hears you do it. And then lastly the cutest is clapping her hands she will only do it if you do it. Funny thing is that when she started doing it was while we where watching Wheel of Fortune and every time the audience cheered she did the same and giggled! Its just the sweetest thing imaginable.

Well that's about it for now. I've been super busy with Cameran and Caleb. We are gearing up for the Holidays and trying to keep them well on top of that. Thankfully neither have been sick again since the Merry go round of Bronchitis and Viruses!!!!!


OK one more thing, if you see to your left I have put up a Tree and a Mistle Toe...Just for fun so join in and leave them a gift and some smooches!