I'm 31 y/o, married to my Best Friend..and still finding out who I am. My world is sometimes chaotic, sometimes mysterious, but always a Blessing. I stay at home with my children, but i'm not the best homemaker.. that's a work in progress! You can read about my daughters disabilities on the first page. It's titled; "Kira Jean Beauty Queen."
I wanted to elaborate a bit about Miss Becky Boo ( AKA Sweetie G. ) I want to add some pictures to show you guys Kira's twin. Right this moment, as I was stealing some pics off of Monikas blog, Aaron, the BABY, came over, sat on my lap, and pointed to the computer and says "Kir-Kir.. dat Kir-Kir" and I didn't even say a word to him. Isn't that insane. He's 2, and he even thinks Becky is Kira! haha after he was looking at "Kira" in the pictures, I say, "Was that your Kir-Kir" he goes "Yeaah" :)
So I know my friends and family know that Kira is total care, I want to touch on what I DO know about Rebecca. Rebecca is very much like Kira when it comes to her capabilities. I don't know why I didn't say that yesterday. She does not have purposeful movements, ( meaning, she is not able to move her body or limbs where she wants them). She has no vision, she does not cry, she is 100% g-tube fed, she also occasionally has seizures as well. Oh yeah, they both have a baby sibling that attacks them, and they can't do a darn thing about it! lol Honestly though. Becky's days are just like Kiras. Becky and Kira both have to be held carefully, or situated carefully somewhere. They both have microchepaly, meaning, the head circumference is smaller than it should be, because their brains are not growing as they should. Though the girls are twins when it comes to looks & even LIFE basically.. the difference is, Kira's problem is her brain waves. She has ZERO organization to her brain activity. All of her wires are chaotically crossed and going haywire in her brain. Becky, on the other hand has an issue with ( oh I hope I say this right) her brain structure. The brain itself had an insult to it, where as Kiras insult is inside the brain, the part you cannot see. Both Monika and I have been told the same thing though.. that this was a fluke thing that happened sometime in utero when the brain was being developed. For some reason something went wrong.. but who knows WHY or how. Anyway, it just REALLY trips me out to know that there is a Momma out there taking care of my Kira all day long, like I am, and to see pics of her youngest daughters birthday party, and there is Kira, laying on the carpet on blankets!! HOW did she get all the way to CANADA?!
Kira has a little friend named Rebecca who lives in Canada. Kira has not met Becky in person, but she knows all about her, and wishes she could meet her! I have been chatting with Becky's Momma, Monika, since the girls were pretty young, maybe before thier 1st birthday, can't remember. (help me out here, Mon?)Kira and Rebecca share a very striking physical resemblance. You will need to do a second take when looking at Becky's pictures, thinking it's Miss Jean! Both girls have the same beautiful auburn hair, the same pouty lips, the same bubble cheeks, and their body type and language is spitting image. Rebecca does not share the same exact issues as Kira, but she does share some. I do not want to attempt to detail Miss Becky's struggles, as I am afraid I may get some wrong, or misexplain. You can read all about her on the blog I have listed to your right. These 2 girls share a very special bond, as I feel that I share the same with Becky's Momma. I now have Skype, so the girls get to meet in "person" how NEAT is that! Logan, my 6 year old and I were looking at Monika's blog this weekend, and He thought all of the pictures were Kira. He didn't believe me that it wasn't his sister, he just didn't know who the other people in the pictures were! LOL
I never take the boys out of the house. I feel terrible that I never take them out for fun activities. So yesterday morning, I decided that "Today, my boys and I are going to have a great and fun day together!" My original plan was to go bowling. While driving though, we all agreed to go to the Zoo and Fairy Tale Town. Since being a Momma, I have only taken my ( at the time, 2 young boys) there once. They have gone to a different zoo once as well, for a field trip. This is NOT good. These fun places are only 15-20 mins away, and I just have never taken the time to do this for them. Crappy. Ethan doesn't remember me taking him to Fairy tale town, how could he, he was an infant in a stroller. So technically, Adrian was the only one I have ever taken, and he doesn't even remember going either. UGH. So, YAY! This is what my boys and I are going to do! Okay, we get there, well, we get to the entrance of William land Park, where the zoo and FTT are inside. This park is huge, and its like a maze to drive around in. There HAD to be at least 2.5 million people there at that moment. Is that even possible? It had to be, we all saw it with our own eyes. We drove around, begging to see just ONE parking spot! There were cars illigally parked. There were cars blocking the area where you need to drive through. There were cars honking at each other. So while driving around and around already so frustrated, as if the car situation wasn't bad enough, we had to make sure we weren't going to hit all of the people who blatently walked right in front of your moving vehicle to cross the street. The line to get into the zoo was wrapped around the building, and the crowds crossing the street to get into Fairy Tale Town was no better. I couldn't handle another second of it, and neither could the boys. Both older boys kept saying "Bowling is sounding alot better right now!" lol So after we decide to leave this mass chaos, we get lost in the maze of the large park, and the paths are so narrow, that I had to pull over to let an oncoming person pass. I am trying VERY hard to be a better Christian, I really am. But the side of me that doesn't like people was emerging bigtime yesterday! That's a personality trait I am working on, and seriously want and need to change. I just don't like people and crowds at ALL! It seems like everyone in public are rude, and inconsiderate. It's like dog-eat-dog out there. I am always the person to scoot over if streets are a tight squeeze, or if in the grocery store, if the isle is crowded, I scoot to the side. Does anyone ever say "Thanks" HECK NO! I always say "Excuse me" if I walk in front of someone in the store, but does anyone utter those 2, kind words if they walk in front of me? HOW, tell me, HOW can I be a good Christian and love all of these rude strangers? Okay, I realized, I completely got of course from the original story here. So, we ended up going out to lunch at IHOP, then headed over to Walmart and they all picked out a new video game to play, then had McDonlads for dinner. They enjoyed it all. They considered it a success for a "fun day", and that's what matters, isn't it! Next weekend, we are going to go BACK to this extrememly popular fun place, BEFORE it opens, to ensure we have a spot, and my boys and I are going to have a BLAST!
Kira went to the Doctor's to get some fasting labs and urine today, to get the ball rolling to get back on the Ketogenic Diet for her seizures. She was on this diet before, almost 2 years ago. It didn't completely take away her epilepsy, but it was the best sucess so far out of all of the medication we have tried. The problem was, even though I was in contact w/ the nutritionist, she kept going out of ketosis. Any extra grams of carbs effect her metabolic system when shes on this diet, and can throw her right out of ketosis. Here's a very interesting tid-bit. Sunblock, cortizone ointment, shampoos, toiletries of all kinds, have CARBS in them! (Sugar) When the skin absorbs these items, you are virtually ingesting carbs. Crazy, huh! So there is no explaination int he scientific world HOW or WHY this diet works against epilepsy, they only know that it does. Of course, since she is 100% g-tube fed, Kira's version of this diet will be a powdered formula called "Ketocal", mixed with a precise amount of water, and apple juice. This is her meal. The ration depends on her height and weight, and it has to be very exact in order to be sucessful. Children who do eat by mouth, get to eat butter and cream popsicles, hotdogs mixed in mayo.. etc. The point is to be high fat, and very low carb. So Kira and I get to be Ketosis Sisters! Only, on MY diet, it makes me lose weight, on hers, she will not lose weight( even though Homegirl can stand to lose a few rolls and chins), nor gain, even though it is high fat. Before starting the diet last time, they make you read this particular book and become educated with what it does to her body and how important it is to follow all of the rules, etc. It also detailed SOOOO many very inspiring true stories of children who were severely disabled, only to turn around and function as almost Neuro typical kids. My hopes after reading this book could not have been any higher. There was this little girl in particular who at the time I was reading it, was just a bit younger than Kira. It said she did not cry and she barely moved. She had no connection to the outside world. After only two days on this diet, she was sitting up and playing with toys. Oh my Gracious! I just KNEW this is what was going to wake Kira up! This is it! After we leave Fremont, I will be driving an awake baby girl, who can see me, home! This was maybe one of the dumbest things I have done throughout this entire roller coaster of a journey. I created this completely delussional image of a miraculous and fully restored healing in Kira. So then when it did not happen, I sank even deeper in my depression and fear and hopelessness. What I should have done, and what I will do now regarding this treatment again, is go into it knowing this diet can help her epilepsy, and in turn, if we can get her seizures to slow down just a bit, maybe more positive stimulation can take place in her brain, thus perhaps encouraging some room for developement. There are other treatments out there that I have always wanted to try on Kira. They are Hyperbaric Oxygen therapy..aka HBOT. The other one is stemcell therapy. I spoke to the Doctor who preforms the therapies and stemcell transplants at Duke. She said that before Kira could do the stemcell, she would first have to undergo chemo. She told me that the chemo alone could kill her because of her fragile state. She said the odds of that are about 20%. thats before the we even start with the stemcells! She said then after all is said and done, there is of course a chance that her body can reject it. UGH! I didn't know what to do. In one hand I have Kira undergoing this procedure and waking up and it creating fresh new braincells that do what they are supposed to. In the other hand I have Kira dying, because I tried this procedure on her, in hopes to wake her up, when I could have kept her comfortable at home the way she is. After being absolutely torn and my mind spiraling every time I tried to process this prediciment, I somehow put it on the backburner. It is still something that sounds so encouraging every time I read about it. I am just scared to death for every little detail involved, physical and emotional. So for now, my Girl will continue with her normal meds and restart the Ketogenic diet to help control her seizures.
Well, since it has been about a year since I posted, I will do a quik catch up on the happenings in our lives.
We have all been pretty good. Kira has remained pretty stable, only in and out of the hospital a couple of times with pneumonias, but overall, no major issues. She has not had any developments unfortunately. She still remains my Sleeping Beauty. Although, you can see by the pics yesterday, that her hair continues to grow so fast! It is so gorgeous, those pics really don't do it justice. I will have to take her hair out of the piggies and take a pic of it laying down. Its almost to her butt, with little spiral curls in it.. sooo beeee-u-ti-ful! Aaron is 2 now and is starting to become a toddler in my eyes, rather than a baby still. He is at that parrot stage where he tries to say whatever you ask him to. Ethan and Logan have recently taught him how to say, "Yo Mama Buttmunch." Its beautiful. *rolls eyes* Logan is in Kindergarten and shining so bright. He is an amazing reader, just like his brothers. I am not sure how all of my boys are awesome readers, and so bright.. WHERE did they get it?! I am so proud of them everyday! Ethan is doing great in 4th grade. They are having another spirit day that he created tomorrow. Hes in Student Leadership and comes up with fun ideas for the school. Adrian is in HIGH SCHOOL, and is about to turn 15 in about 6 weeks. This blows my mind. I was 15 when I became pregnant with him. This is too weird for me to absorb. In my eyes, he and all of the rest of the 14-15 year olds out there are so YOUNG. I don't even let Adrian go walk around the town by himself, or do things other teenagers are allowed to do. Yet, I was preparing to become a housewife and family at his age. "Mom & Dad, I am so sorry for the shock of your life when I told you I was going to be a parent myself at that age, I cannot begin to imagine what that must have been like for you guys!" lol Adrian is such a sweeeeeeeeeeet hearted softy. He is very bright and mature. Very trustworthy. Still very much into his books, and loves his baby brothers very much. Well.. the 2 youngest anyway. Ethan, he butts heads with, haha.
Jim is working, working, working to provide for his family. He's my Big shweethot! We are doing great. I am continuing to be addicted to my body image. I have lost all of my weight, and I am at goal.. which is 135. I am 5'5. However, even being at goal weight, I still feel and see myself in the mirror as chubby. I want to try to lose about 10 more pounds if I can. I am doing my treadmil and alot of strength training. I want to see how toned I can get my body, but I do NOT want to put any muscle bulk on. I stretch often so when I develope more muscle, it will be lean. I have had my weight loss success through the lowcarb diet. It's such a WONDERFUL diet. But, I am only human and I want that mexican, chinese, or junk food too occassionally. So guess what, I eat it. BUT only on the weekends. I cheat on the weekends, and get right back on track and back into ketosis right afterwards. This has worked fine for me. This way, I don't feel like everything is completely off limits. During the week though, I am VERY strict with my carb intake. I am almost pure protein and fat. I limit my veggies, because even veggies, although very good for you, do have carbs in them. Eventually when I get over my obsession with my body issues, I will trasition into the every day, healthy lower-carb lifestyle; whole grains, fruits, veggies, and lean protien. As for now, I will continue to irritate my family with my extreme lowcarbness! ;)
Hello, Hello! I am back in business. I have a new computer, I have new batteries in my digital camera.. I am ready to start blogging! But not yet, I have wee ones needing my attention at the moment, but this is an FYI. There will now be regular posts and pictures here :)