Happy Birthday Cameran!

Baby girl is growing up on us! Hard to believe she will be the BIG 2 on Feburary 7th! We are completely done with the Topamax this coming Friday and we couldnt be anymore excited about that! She has done realtively well, she is having more force behind those seziures but they remain in the same numer routes 8-15. Next week we will start with the Klonopin wean hope it goes just as well. In the mean time we are to start her out on the Keto diet we cant wait for something new!


Cameran is really coming along since coming off the Topamax. She is signing for more, eat, milk, my turn and said ball a couple days ago during class and it was repetitive she was also trying to throw the ball it was a great thing to see! She has also improved on undressing especially when its bathtime the girl wastes no time to get those clothes off! We just love seeing her exceed in these tasks its such a warming feeling!

Giving baby a kiss!

Some good news is that Insurance approved Camerans Canopy bed yesterday so it will be here very soon! Mommy could really use a break to herself without having that worry that she will flip out of her bed and brake her neck while I use the restroom or take a quick quick bath! We have a few delays on the walker....long story but it will get back into the right hands and get approved shortly as well. All I can say is Thank the Lord for Insurance!



Lets learn!




Where's Cameran?



Yummy Cheetos



Cheeeeessseee.....I wasn't getting into anything!



I got a new bathtub!


I love it and now I wont get hurt when I have a seizure! Now we just need to install a seat belt in it since she cant sit still! : )






Happy Birthday to Cams little friends Ben and Connor who also share the same birthday! We are thinking of you guys hope the kids have a great day Jen!

Our New Years Resolution!

Its a new year and we are dealing with the same ole same ole!

We are praying for a better year as we move into some new things for Our Sweet Baby Girl! Our first start is getting her off 2 meds leaving her with just one! At her Neuro appt on Friday we discussed options and we are pretty far down the list of meds left, as in not many more left to choose from. For the time being we are removing the Topamax 1st we are down to 75mg right now and will go down 25mg every Friday if things go smoothly, so far so good, no changes. She is having about 8-15 a day and does have occasional days of 20 depending on mood! After this is gone the Klonopin follows right in the weekly footsteps of the Topamax schedule until it as well is gone leaving us just with Keppra. Again this is if all goes well. The Topamax is not their fear its the Klonopin so we will see.



Her results from her blood results as I may have mentioned of them being elevated when they had ran them for a 2nd time on Dec 14th. Turned out she was Acidodic from not eating or drinking after coming off the ACTH. Cameran has been off the ACTH since the 1st week of November and this past week she is just now slowly coming around to eating again. It was very scray there for a while as she kept getting very ill from not having the strength to fight anything off. It was cold after cold, breathing treamtents and now dealing with low irons and that is yet another med we had to add to her many others...uggghhhh! It was really hard seeing her go through that whole process, I think it was worse coming off the ACTH than being on it! What a nightmare I'm just so glad that part is over with!



We talked about Camerans EEG readings also as most of you might know right now that she is no longer having Hyps but still continues to have an abnormal EEG. We found out that it is coming from her Frontal Lobes but not in just one spot up there its all over. HE said she would NOT be a surgery canidate since its not coming from one specific spot like say a lesion or some sort. Remember they found no lesion besides the one in her cerebelum(it has been there from the beginning with no growth) on her last MRI back in October.


Whats next you may ask well its off to a new beginning we like to think, starting fresh, its a new year right, so why not! We are gonna try a med free option and go with the Ketogenic diet. Before starting this they will wait for the Topamax to be gone then start it in betweeen the two weans. This gives us time to see what happens with the weaning and to have some lab works done as this is needed before starting it. I hope and pray it works for her as she deserves a med free childhood so she can begin to learn new things and catch up to where she needs to be. And already our little bud is beginning to bloom out, saying and reconizing Mama and Dada and oh have we waited for this for so long just to hear her say those words and her face to light up when we walk in a room and even fuss when we walk out! Shes is saying Buybua.. a combo word of Bye and Bubba. Its cute! She also is saying Hi again and has the sweetest little voice!


We recently had her re-evaluation where we got great news that she has progreesed to an 11-15 month range! Great news! She is really moving along and getting smarter by the day! She is actually starting to interact with her Big Bubby and we just love to see that, and of course that is what he has been waiting for. If only we could just keep her attention for more than a couple minutes. She is just a very busy girl always on the run!



We are currently working on getting her a Pommel Walker to help her out from falling so hard when she has seizures and also for it to help with her balance issues that she remains to have. Another thing in the works is a Homecare Canopy Bed. as Cameran has recently been taking falls out of her crib and pack n play as she has mastered her climbing skills once again! She is a smarty pants pushing pillows up with her head as she climbs up on furntiure, We lay them down to keep her off but that too has failed. We just dont know what else to do with her she is just so busy busy busy! I feel like my whole day is constantly pulling her down off furniture only for her to go right behind me and climb back up. Then when I let her go she falls off and gets hurt but does she learn her lesson.....No she gets right back up and does it all over again! Why....I just dont understand it, this is all so frusterating sometimes!
But she is my little sweetheart and I love her dearly and boy does she ever give the biggest tightest HUGS you could ever imagine it just makes my day. And not to mention those Big Sloppy Wide Mouth Kisses I get every morning, I Love It! I wouldn't change her for the world! : )


Can you believe it she will be the BIG 2 on February 7th! My baby girl is growing up!


For more information on the Canopy Bed this is what we are in the works of ordering:http://www.pedicraft.com/canopybed_homecarecbs.html

The Pommel Walkers site is:
https://theradaptcom.terrasite.com/new/products/productDetail.asp?PID=54

I got a new haircut!

Cameran was so overdue for her 1st haircut! She had a mess of a head and we knew nothing to fix it but pony tails and piggys! So we where off for a dreadful experince as we new it was going to be interesting for someone to actually hold her still during the cut! Luckily I came among the coolest place just for kids! So here is the photos of our day!



Here is Cameran on the way to Franklin, Tn which is about 30 mintues away! She was so excited, the girl loves to take car rides! Her hair doesn't look to bad here but I'll be sure to put one on here of what it looks like most of the time!



This place was just the coolest! Designed just for kids! Its called Snip Its!


Getting settled for the cut what a great thought, putting buckels in the little seats!




Here we go!





1st little cut!



Brother was getting a fresh haircut too!


Cameran was being such a BIG girl!


How's it going over their Bubby?


Lookin handsome Caleb! What a great cut for back to school!


1st blow drying experience, she kept holding her hand out to feel the air! Too Cute!


They had these cute little T.V.s at every station to keep the kids entertained along with bubbles, animal cookies and suckers!


You can also hold partys here where you can get beading, threads, cute little princess dues, what a neat idea!


All done, you did great Cameran!


Side view



Cameran got a Gift Certifcate noting the date on which she got her 1st haircut along with a poloroid of her new do and all the hair they cut off in a small ziploc stapled to the pack! What a great keepsake!

When we 1st got there they gave us 2 cards and this is what you do with them.


You put it in the machine and it gives you a prize at the end of the cut!



Lookin cute Cameran!





Back view, it looks so much fuller now! And actually before the cut the left side of her hair was about an inch longer than her right and the back middle was an inch shorter than it all so she just evened it up to that part! I thought it turned out really cute!



Ok now here is one of her on Christmas Eve she was literaly lost in hair and no matter how often we brushed her hair it always manages to get back looking like this 5 minutes later! She also had the biggest rat nest in the back it was terrible!!!! So hopefully this new cut will help out!




Cameran fixing to attack her Elmo!



She tries to eat the hair off of him and laughs when he starts talking and shaking! Its one of her new favorite toys!





We are off to the Neurologist on Friday so check back soon for details on blood results and such!

Happy New Year!

Cameran trying out a football helmet and looking too cute!

We believe our Little girl has learnd who Mommy and Daddy are! We have been hearing lots of MaMa and Da alot and when we walk in the room she greets us with our names! She is babbling a little more and is just a happy baby girl that loves to give hugs and kisses!



Cameran had an EEg in Dec. and it read abnormal but not showing Hyps! What this means we aren't sure she goes Jan 12th for all results including her blood results that she had that same day! I caught a peek at them at her Peds office he didn't know what any of it meant since he didnt know what the testing was for. He just mentioned some of them came back very high! I believe they where testing her acids!


Cameran loves to climb up in this chair and rock!



Cameran got put on iron drops last week for her low iron. This has seemed to help as she isn't eating as much paper! So funny!
Also while on our trip to Louisiana Cameran started running a temp of 105.8 turned out she had an ear infection that is now healed and she was also weezing and having trouble breathing. So they tried her on a breathing machine and it did the trick her weezing stopped as did her cough. SO we did those treatments for a week and it helped her in every way. They aren't sure if she has asthma but they told us to hold onto the machine that if her cough keeps coming back she probably does have asthma.


Our Sweet Baby Girl! She found her blanky and where theres a blanky theres her thumb included!



We can't believe how small she is again. She has lost about 7-8 pounds and is looking like herself again weighing in around 28-29 pounds. Its been 8 weeks since we stopped the ACTH and boy are we happy that is all over with!