About Me

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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."

Tuesday, March 18, 2008


I know its been a while. Sorry folks for leaving ya hanging.

Aaron got pretty sick with what I thought was a VERY nasty cold, then Kira got it, and of course her body can't handle illnesses and shes in the hospital again right now. She tested positive for RSV. I knew Aaron was "jacked up" for lack of better words, but didn't realize it was RSV. He is now much better, but Kira Jean is not doing too hot. Because of the illness, her seizures have been out of control for 7 days now. They have basically been back to back, literally, all of these days. The Ativan, nor Valium are even touching her. It SUCKS! She is on a Vaporflow machine, which is similar to a c-pap machine for oxygen. It is a heavy steady pressure of oxygen mixed with warm humidified mist. She is currently on 70%. We need to wean her down. 2 days ago, she was able to recieve 50%, but she now requires more 02.

Not that this is even remotely important in the sceme of my days right now, but since I am here posting, I should let my readers know that I am now down to the 150's! I weigh 159 now!

K, gotta shower and get back to Kira Girl.

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Monday, March 3, 2008


Today is my weigh in day, and every woman knows what "that time of the month" does to her. The scale is NOT your friend at said time. I am 2 pounds up from last Monday, but only because of the water retention and bloat. I will continue to flush myself out and stay on track with my food, and after Auntie Flo leaves, my weight should go back to norman.

I have changed my diet. I love going lowcarb, and have recently added in extra fats. I have been reading alot on this higher fat version of lowcarb, and ALOT of people have great success with it. I have always kept it pretty lean; chicken, fish, veggies, salads. But with this higher version, you want to lessen the protein and increase the fats. The ratio is like 80% fat, 15% protein, and 5% carbs for the day. The extra fats can come from heavy cream, dressings, butter, cheese.. etc. I know it sounds crazy, but somehow, it works for alot of people. The more fat they put in their mouth, the less fat they wear on their thighs.. amazing! So I am going to play around with this for a bit, and see how it goes.

Preschool for Kira???

When this option was presented to me, my initial question is "HOW?" How can you send an apparent comatose child to preschool?! But as it was explained to me, my heart began to melt! I got so excited for HER! Her wheelchair is made with adapting parts at the base to hook into a vehicle such as a van or a bus. Now, I don't even know if I will be emotionally able to have a little school bus pick her up and take her, or if I would just drive her myself, ( and probably stay the whole time ) but it is equipped to have the bus pick her up. Let me explain what going to preschool would mean for Kira....

She would listen to music and the Teacher would clap Kiras hands to the music.
She would make me beautiful art pictures by having the teacher swirl her hands around in finger paints. She would be pushed up to the table in her wheelchair during meal times, to be tube fed. They would do alot of things that Neuro typical preschoolers would do, of course, the teacher would have to move Kiras hands for her. This would provide SOOO much stimuli for her! Nobody knows how much Kira is aware of, and I believe she is aware of alot.. her brain just won't allow her to respond and tell us. Can you imgine how much she would LOOOOVVVEEE to go to school, and PLAY and be around other children like her!! Momma would get a class picture of her classmates, all of her friends in wheelchairs... how ADORABLE would that be?!

So she will be 3 on July 4th and school would start in September. It would be a few days a week, a few hours a day. I am having a meeting with the Districs person in charge in special education on the 12th of this month. I will keep you updated.

Wednesday, February 27, 2008

Aaron is ONE!

It's official.. I now have a 1 year old again! Yesterday was his birthday, and it was very low key. His party will be in a week and a half, it will be combined with Ethans party. I have never had a combined birthday party before, and honestly I am not a huge fan of them ( unless they are twins ). I think each child should get their own seperate celebration for thier day. That being said, Ethans birthday is in 6 days and seeing as how Jim has been off of work for a little while, we need to be money wise and do it like this.

Yesterday I baked a chocolate fudge cake with choco frosting and he LOVED it! I don't give him sweet stuff yet, other than grahm crackers, so he was in sugar heaven last night! I need to go buy him some walking shoes. He hates to stand, perhaps if I put some shoes underneath him for more stability, he may start.

*** By the way, do you have any clue what a chocolate cake does to a babys diaper the next day?! Ohh ma gosh!

Monday, February 25, 2008

SO fitting!

Wow, I just read something that made my heart melt! When I was pregnant with Kira, I decked out her beautiful nursery in butterflies. I have always associated butterflies with Kira... see her image above the Title of this Blog (butterfly). Well, I just read a perfect, very fitting analogy. Kira is like a BUTTERFLY... she is currently trapped inside of her cocoon. She continues to flap her wings inside, trying to emerge, and one day she will finally break through. I LOVE this, I absolutely LOVE this! Now, I have even more of a reason to connect Kira to butterflies!

Monday = Weigh in day

Another Monday, another day to record my weight. Don't think this scale addict honestly only stands on the scale once a week. Heck no. I sadly obsess over it, and usually stand on it after every potty trip, after meals, and of course before bed and right after waking. BUT I only record Monday's weigh in. So what was it this morning you ask? Still at 162.. it has been telling me I weigh 162 for about 3 days. On Friday, someone asked what I was going to do this weekend, my reply was; "Lose 1 pound." Eh, guess your plans and lifes plans don't always match up. Tis' okay, because I have been staying ON TRACK. I have not cheated with sugar or carbs for almost a month, and for that, I am so very proud of myself!

And, as a side note.. I know I kinda flaked out on Friday with posting my new do'.. but you have my word, they will be posted after my shower this morning.

Saturday, February 23, 2008

Black hair AND black coffee?

Last night, I went to have my roots touched up. I AM a natural blonde, lets just get that out of the way right fast. However, I have been choosing to go a step lighter than my own color. Okay.. so, I like to play with colors in my hair, I have had purple streaks, pink, and red chunks as well. Last night, I had my stylest put black hair in the back. She separated my top hair from my bottom, to create a 2-toned look. This look has been in debate as far as classy VS. trashy. I'd like to think i'm a little bit of both.. so it should suit me well.

So this morning, in honor of my new black hair, I was considering having my coffee black... but, I just can't find myself to be that daring!


Okay so, I keep forgetting to take pics, so I just got back home, and remembered.. so bare with the hat look. I am holding my hair out to the side so you can see the dark behind the blonde. The back blonde goes at an upside down V angle.

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Friday, February 22, 2008

Awww, morning surprises

Is there a better way to start your day than with a baby who had a total blow-out in his jammies? There has been some weird tummy thing moving from kid to kid here. They show no signs of an illness, other than occassionally vomiting or having diarrhea. FUN STUFF! Just one question... if his anus is in back of him, how did the diarrhea get on his front thighs, belly, etc. Its everwhere BUT his backyard!

Thursday, February 21, 2008


Love is...



Numero Uno is Adrian James. He is our first child and an utterly amazing human being. His middle name is after Jim. I had Adrian when I was 16 years old. He is almost 14, and Its so crazy for me to think that in 2 years from now, I was a Parent. WOW.

Adrian is such a unique boy. Jim and I have always said throughout the years that he is so different than any other kids we know. Never has he had tanrums, back talked, attitude, nada. As a baby, he was the HAPPIEST, most loving, giggling little guy ever. As he went through his toddler years, he remained happy, quiet, caring, considerate. Even as a teenager, where most teens get attitude, perhaps start to rebel, Adrian remains to be such a mature, sweet young man. This is not to say that he is perfect, but if there is such a child, I guarantee you Adrian would win that award! Now, if I could just get him to do his chores without asking!

He is in GATE and doing great in school. He struggles in the math department ( just like his Momma) so he is in a support class for that. He takes after his Grandma ( my Momma ) and his uncle ( my Brother ) in the reading department. He is a bookworm, and I LOVE that about him. Give him a good book, and he is happy!

As you can see, I am no different than other Momma's who think that every single one of thier children are amazing and the best kids on Earth! *wink*

#2..... (not THAT #2)

Ethan Robert, Robert is Jim's Dad.. aka E-Bo... is our second child. He is 8 years old, soon to be 9 on March 4th. He and Aaron's bdays are a week apart.. that's gonna get expensive! Ethan is a bright, caring, sensitive, boyish boy! He is extremely talented in the art department. He has always had a gift of drawing, and lately has put his skills on the computer. He has taught himself how to create games, and short movies by creating, and copying and pasting over and over onto different screens. It truley is amazing to watch. When he is sitting down showing me his newest creation, I sit there bursting with pride and in such awe.. I am almost at a loss for words. He is only 8! It's crazy!

He's in 3rd grade and a wonderful student. He is in GATE and in the "Student leadership" which is like a PTA for the students. He and a few other children meet with the Principal once a month to offer suggestions for the school. His idea of a "Backwards Day" happened 2 weeks ago. Kids can come to school wearing their clothes, hats, shoes, backwards, speak backwards, etc... pretty cool! He's a pretty cool kid!


Logan Dennis is our 3rd child. His middle name Dennis is after my amazing Daddy and brother. He is a Christmas Eve baby..he just turned 5. He is soooo quik-witted and such a character... I will be sharing alot of things that come out of his mouth that blow me away! For instance, the other day, I was online and he asked me to make him a pb&j... this is how our conversation went;

Logan; "Mom, will you make me a pb&j?"
Me; "Yes, hold on."
Logan; " I don't want to hear hold on, I want to hear your feet in the kitchen making me a peanut butter and jelly sandwich."
Me; *Chin on the floor* and laughs out of both of us!

He has a key obsession. Quite literally, an obsession.. I think he needs an intervention soon. If he is anywhere in the house, and you even slighty move a key, he will hear it and come running. He can tell you what key belongs to what door or to what vehicle. If he doesn't grow up to be a locksmith, I'll be shocked! He loves most Nick tv shows.. prefferably Dora and Diego. He starts school this year.. waaaa.. I don't know if *I* am ready. He is still a baby to me.

The baby...

Our 5th child is Aaron Martin. His name is special, he is named after Jim's Step-Brother who passed away while I was pregnant with him. He was in a motorcycle accident. That's where Aaron comes from, Martin is after his awesome Grampa! Tell me what you think, because I find this hard to believe that this is mere coincidence... Aaron died on Sept. 11th. (9-11), and his namesake weighed 9-11 at birth. I think this is so beautiful, I truley believe that that was Aarons way of letting us know, he knows.

Aaron was a colicky baby. He has had a dairy intolerance from day one, and i'm sure that contributed to his colic. Even after we switched his milk, and I removed all diary from my breastmilk, he remained colicky, though a little better. He is going to be a year old next Tuesday, and I know everyone says time flies, but MAN, it does! I cannot believe it has been a year already. He is the sweetest baby ever. Hes such a happy guy. He ALWAYS has a smile for you, regardless if he's tired, sick or hungry.. he will shine that bad boy upon request! His head is a cue ball... no clue when those hair follicules will become active. He says "GET!" "Buh bye" and "Dadda" He is not close to walking yet. He just barely started cruising furniture. Normally, once he pulls up on something, he will sit back down and crawl away. Who knows, he may just decide to get up one day and take off! That's my precious boy in a nuttshell.

Tuesday, February 19, 2008

Perfect Beauty Tips...

Time-Tested Beauty Tips ...

For attractive lips, speak words of kindness.
For lovely eyes, seek out the good in people.
For a slim figure, share your food with the hungry.
For beautiful hair, let a child run his fingers through it once a day.
For poise, walk with the knowledge you'll never walk alone ...

People, even more than things, have to be restored, renewed, revived,
reclaimed and redeemed and redeemed and redeemed. Never throw out anybody. Remember, if you ever need a helping hand, you'll find one at the end of your arm. As you grow older you will discover that you have two hands. One for helping yourself, the other for helping others.

Kira Jean Beauty Queen

As promised, here I sit, with my tall cup of joe with sugarfree hazelnut creamer. Okay.. so my babies... I have the most precious, loving, beautiful babies ever! Yes, I am even calling my teenager my baby! One of these babies in particular is very unique, ( aren't they all though!) and I know alot of people are interested in her journey. I will give you some background on my Kira Jean Beauty Queen... * I am editing this to clearify that she is undiagnosed. She has many symptoms and diagnosis'.. that all come along with an abnormal neurological state. She is a medical mystery.*

I had a completely normal, uneventful pregnancy and delivery. She was quite active in utero, always kicked and did somersaults. All of the run of the mill pregnancy testing was normal, so I had nothing to think, other than I was having a healthy little GIRL.. WOW.. a girl! I have always wanted a girl. I absolutely LOVE being a Momma to boys. I love all that comes along with the ones with pork n beans. I had 3 awesome boys, and I wanted so badly to experience pink and butterflies and flowers.. ahhhhhhh!

I was in early labor for days, when I went to L&D to be accessed. They saw that with each contraction, her heartrate would decel a little. They thought it best to augment my labor with Pitocin that day. This was July 3rd. On a CRAZY side note, I had no idea until a year later that an aquaintance of mine ( now very close friend) was in the room right next door to me, laboring all night with me, and our kids are hours apart. Okay, so.. Kira Jean makes her debut on July 4th at 3:40 a.m. She weighed in at 8lbs 1 oz. and was 19 inches.

Right away, we noticed she wasn't opening her eyes. She did cry a little and move a little at birth, we couldn't tell immediately that she was any different, she just seemed exhausted from the ride. The time that I was in ignorant bliss would only last a few hours. During that time, we had family and friends come over to meet our daughter, it was great! When she was a few hours old, she developed a fever. The doctor had me remove her clothing, and told me that some newborns can develope fevers if they are dehydrated, so he wanted to offer her a bottle. As I was giving her a bottle, she choked up on the milk, and went purple. The nurse came in, and tried the bottle.. same thing. Okay, put the bottle away! So maybe an hour goes by and I have her in my arms, just cuddling, not feeding or moving, and I look over, and there she goes again.. desating! I freak, because this time, there is NO reason for that to have happened. A NICU nurse comes down to get her, to take her for an examination. At this point, her eyes still aren't open, and everyone is assuming its because they are swollen from delivery. They are also thinking the fever is caused by an infection somewhere, so they do a bunch of lab work to determine the cause. In my head, while yes, I am very afraid, I am thinking I only have a couple of obstacles here.... she has to become coordinated with a bottle, and treat the infection.. not too much to deal with, eh!

A day passes.. she has become still and quiet. Her eyes have not opened, she is not reacting to the outside world, and people are taking notice. On day 2, I notice her body almost shivering, but not. It was very mild, but I could see it. I told the Dr. who had already had a thought out conversation with me in his own head, and he asked me to sit and talk with him. Now, before I tell you what this conversation entailed, let me tell you, that I thank our Heavenly Father that I had my Mom by my side at that moment. She has been by my side from day one, and I really feel that I would not be who and how I am mentally without her. She has been my rock through out this journey, I love her so much, I honestly could not have done this without her, I mean it.

So, he sits me down and tells me that he suspects there is something neurological going on with Kira. He says he would like to do an EEG on her brain. I had no idea at that time what an eeg was, but I was understanding that he thought there was something wrong with my daughters brain.. WHAT?! I was shaking uncontrollably as he was telling me this, and her PT later told me she secretly thought Kira was having a seizure in my arms, until she realized it was me. They do the eeg, and I only had to wait a few hours before getting the results.. the horrible, gut wrenching, disgusting results. Here again is where Jesus put another Angel in my presence.. my Sister-in-Law Kim. I had just walked into the Nicu, and was at the sink washing my hands when he, the Neonatologist walked up to deliver the results of her eeg. If I remember word for word, the conversation went like this.. "Are they in?" "Yes." "What are they" "It's very abnormal." "What does that mean? What does that mean? What does that mean?" This is where people talk about shock as being in a dream state. The room was literally spinning, everything went foggy, I went numb, and felt sick. My Sister Kim walked in RIGHT then. Thank you Lord. I sat down, and I remember him having his hands on my knees asking if I can hear him. Jim then came in, sat next to me, and I told him what the results were. All I needed to know is would she make it?! He could not tell me the answer to that. We went into my room and talked about what this meant, what testing they will do, etc. Kira did not suffer lack of oxygen at birth, there was no birth trauma.. so was it the one time I got into the hot tub for 5 minutes? Was it when I fell? Was it because I changed the cat litter? Was it the ocassional coffee I drank.. WHAT caused this?! Here we are 2.5 years later and that question has yet to be answered. I am sure it never will, and I am okay with that now. Her eeg readings are extremely chaotic. They almost show a burst suppression pattern. The brainwaves will be all over the place, no organization to them whatsoever, then all of a sudden, show a flat line.. no activity. An analogy that a Neurologist once made to me about her eeg was, " Trying to read ANYTHING in her eeg, is like trying to hear a cat meow in the middle of rush hour traffic." Normally, in a persons eeg, you can tell when they are asleep or awake, if they react to outside stimuli, etc.. but not my girls.

Kira ended up being in the NICU for exactly one month. The whole time, she had to be kept naked, she kept her mysterious high body temp. If you were to even drape a recieving blanket on her, her temp would shoot up. She was placed on Phenobarbital for her seizures. An NG tube was placed for her feedings, although, back then, she would suck on a bottle some. She never did root, or open her mouth on her own, but if you placed your finger in her mouth and pulled down her tongue, then worked the nipple in, she would start sucking. She came home on oral feedings, but a month later, when I had to take her to the ER for what I thought were out of control siezures, she was found to be failure to thrive. I knew she wasn't eating alot, she would tire out quikly, after a couple of ounces, but she *was* getting some. I did not know she was ftt. During her hospital stay, they placed another NG tube, and we got a feeding pump to take home. She gained 1 pound in a week in the hospital. Poor girl must have been so hungry :( The Intensivist changed her anticonvulsant during that hospitalization, and since almost that moment it seems, she lost what suck she had. This is at 2 months old. During her 1st year of life I would try the bottle, but quikly became very discouraged and depressed until I was no longer even attempting it. I very much regret giving up on her. I am certain she could have learned stronger oral behavior if I would have continued. When she was a few months old, she was diagnosed with autonomic dysfunction. Your autonomic system controls your breathing, body temperature, heartrate, blood pressure... consider it your "automatic system". This is what had put her in the hospital at 2 months old with fever, her arching, sweating buckets, breathing very fast and heart rate in the 220's. Her behavior was textbook autonomic storming, so I am baffled why she wasn't diagnosed sooner, as she has had storms in front of a Neurologist, and I described her symptoms to another Neurologist. Yet, it was her wonderful Intensivist in the PICU who hit the nail on the head and placed her on Propranolol. Kira is on blood Pressure medication, currently Amplodipine and Captopril. She is no longer on Propranolol, because it butts heads with Albueterol, which she needed often for her pneumonias. She is now on Baclofen for her storming. It has regulated her beautifully.

Forgive my bouncing around, but I will forget things, then suddenly remember, and so I may seem to go from present to past, and back to present. At 3 months old, she was put under to have a G-tube placed on her tummy, a nevus removed from her arm, a fundoplication done to stop her GERD from coming up, and muscle, skin, and nerve biopsies taken for testing. Kira has Microcephaly, which means her brain does not grow as it should, and her head circumference is smaller than it should be. At 2.5 years old, her brain is the size of a 2-3 month old. But everyone says you cannot tell. I think it was more noticeable when she was bald. If you saw Kira, you would think she was asleep. She appears to be asleep 24 hours a day. She has never woken up. She does not open her eyes, she does not have any purposeful movements, she does not eat by mouth or speak or cry. But she is the MOST precious, Heavenly Angelic being ever! She has seizures all day long, regardless of what medication or diet we have tried on her. She will lift an arm, turn her head, or roll her eyes open during a seizure. This is the most active I have ever seen her. It just doesn't make sense to me. WHAT is it that gets sparked in her brain during a seizure that allows her eyelids to open and her limbs to move, and why can't she do it without a seizure?! We have been Blessed to recieve her beautiful pink and black wheelchair with her name embroidered on it through Alta Regional. They have also provided us with a Britax carseat, a bath seat and a tumbleform chair. They have been such a Blessing. Her nurse Bruce has been trying to get me to accept respite care for her. Thats where an LVN would come into my home for a few hours a day or week to help me with Kira. I have declined this whole time, because I figure she is mine, I am her Momma, why would I need someone to come into my home and take care of her? I do however see how it could be beneficial for me. They could do range of motion, massage, singing, rocking, etc. while I take care of the baby or spend quality time with Logan. Kira is currently on Baclofen, Captopril, Amplodipine, Bicitrate, Robinul, Klonopin. She has RTA ( acidosis) , and the Bicitrate evens out the acid in her blood. She also has a neurogenic bladder, which means she does not go peepee as soon as she feels the urge. Her bladder will hold it until its a huge balloon, then the flood gates will open. She urinates about 3 times a day. Her bowels don't work as they should either, so I have to give her daily Miralax to keep her stool soft, so she doesn't get compacted. Kira went from Nov. 06 to Jun 07 being in the hospital literally once a month with seperate pneumonias. It was then decided that she was aspirating her own saliva and she was placed on Robinul to thicken and dry out her saliva. She was also ordered a TheraVest. This vest is amazing! It fits like a life jacket, inflates like a blood pressure cuff, and shakes her lungs nice and clear. I'm sure she thinks I took her to Disneyland and put her on a rollercoaster every treatment! Since she recieved alot of steriods during those ill months, she had a beautiful side effect.. hair growth! Her auburn hair has grown so much. It's absolutely gorgeous. Its curly, soft, long hair. I'm SO jealous!

Well I need to refill my coffee cup.. so I will take a break for now.

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First Entry

I have finally decided to create a blog. After Kira was born, I have had some requests to start blogging, so friends and family can stay updated with her. She is 2.5 now, so I'm a little late... but "Better late than never", right? We have a pretty busy household. The 4 cool dudes are; Adrian (13), Ethan (8), Logan (5), Aaron (1). The only dudette is; Kira (2). My husband Jim is a Union Electrician, and I stay at home with the babies. Considering it is almost 1 am, I will write a detailed post, all about my kids in the morning.. with a tall cup of coffee by my side!