tag:blogger.com,1999:blog-65279004008555280722024-03-13T01:39:52.810-07:00Welcome to my Life!A glance into my life... as a mother to a special needs child, as a mother to 3 young girls, as a mother doing the best I can to raise them to know God!
Some of my posts will be about my daughter who has Down Syndrome, heart defects, hearing impairments, and was tube fed "forever". Some will be about my beautiful firstborn daughter who made me a mom in the first place. Some about my struggles, some about our happiness! some about our newest little girl. Like it or don't, it's our life!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-6527900400855528072.post-570502447429784902017-06-26T21:30:00.000-07:002017-06-26T21:30:57.781-07:00avoiding the inevitable (heart surgery in our future again)Friday, Auriana had a cardiology check up (as she does every 6 months). We have been watching her Mitral Valve for several years now, knowing in the back of my mind that sometime she will need a mitral valve repair, making her 4th open heart surgery. Every appointment the reality of this becomes more and more evident. The past couple appointments, cardiologist has used words such as "mild" and "stable", but Friday the words changed to "moderate severe". Moderate severe, in the land of heart defects, is a nice way to say "this is becoming a real threat but not yet an emergency". You see, in CHD world, it is common practice to wait until the child's heart is in a state of emergency before finally choosing to go ahead with the surgery you know they have needrd for some time. Auri's surgeon once explained it that "you have to wait until their body knows the heart is bad before you try to fix the heart". When Auri was born, we had to wait until she was in "full blown congestive heart failure" to fix her AV Canal. When her aorta was closing up, we had to wait until her heart was backing up to the point of discomfort in order to remove the membrane blocking her aorta. When the left ventricle was closing off, we waited until blood barely flowed through and was causing her oxygen levels to go down, before fixing it. Apparently this is to keep the body and the heart from going into shock. So, now with words like "moderate severe", she is once again in that tricky place of "bad" but not "too bad". Her mital valve is quite sticky and is pulling oxygenated blood back up into deoxygenated blood and mixing it up and spitting it back out into her body. But, her oxygen levels read high 90's (which is common for her even when her heart is bad). Auri's little body compensates well, but her heart will need repaired again to keep it working. The biggest indicatorat this time is her blood pressure has started evelvating, even while on blood pressure medication, and her heart pressures are elevating and causing one side of her heart to begin to swell. Currently, the goal is to get her to January or so before putting her in the surgical team referral pool again. For now, she is happy and "healthy" and active, and has no idea that she will soon be back in the hospital for her heart, fighting for her life again. My baby Auri is such a strong girl and she doesn't even know it.<br />
God has gotten her through 3 surgeries and I know he will get her through another, but it doesn't take away my worry. For now, we will just continue to live life as normal as possible and try to keep the thoughts in the back of my mind of the inevitable surgery we have avoided this long.<br />
Auri will start a new school in 3rd grade in just a few short weeks. She will go to the same school as Kylee and Lily. This will be an exciting new venture. She will also have her 9th birthday in just a few short months. For now, we will look forward to these positives and pray for the future. Pray that the goal of January does not become a sooner reality and pray that Auri will stay strong.Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-11483770772942809862016-11-22T04:33:00.003-08:002016-11-22T04:33:53.568-08:00A new chapter. We have a son!Asher Seth arrived on his own timing on Tuesday, November 15, 2016 at exactly 3 pm!!<br />
We had a scheduled c section that was scheduled for November 29. This was my last pregnancy. Doctors told me early on that i would have to have a c section, so i had already planned on that. I also had opted for a tubal (because well...5 kids is enough...7 between the 2 of us...more than will even fit in our vehicle)... So anyway, i had met with the scheduled delivery doctor several weeks ago and discussed my plan for Asher's birth. I had chosen the "perfect" doctor, chosen the day and time, opted for a "gentle c section" where i would not be strapped down, the curtain would be lowered, the doctor would put him straight onto my chest, allow me to breastfeed while still in the OR, they even agreed to keep Asher and my husband bedside during the closure of the c section. All of this was planned.<br />
Well...God had other plans apparently.<br />
Tuesday morning, i woke up feeling strong contractions. Told my husband i thought i was in labor. I went ahead and got all the kids ready and took them to school. My contractions got even stronger while driving. To the point where i called my doctor and was told to go to labor and delivery. So, i still had Lily and Abby with me and now needed to find someone to get themas I sat in the hospital parking lot. A sweet friend ended up coming and picking up the girls and getting them where they needed to be while another sweet friend came and sat with me in the hoapital until my husband finally accepted the fact that yes, i was actually in labor...this was not in my head. This was not braxton hicks. I had gone into labor and my blood pressure was sky high at this point and this baby would be coming today...like it or not.<br />
"MY doctor" was NOT here. The doctor who was here was NOT accepting of the gentle c section idea, and on top of that it was the only male doctor in the whole practice. I was a little upset by all of this...but my son was coming...today.<br />
So, once my husband was there, everything started moving quickly. I was given an hour to prepare for this. I immediately started calling and canceling all my children's doctors appointments for the coming days (which i still have to reschedule). I called my mother to let her know what was happening...and somehow she managed to get all of my other children.<br />
So...i was taken to a freezing cold Operating room. I swear this activated ptsd from my past traumatic experience in the OR with Auri. I requested a midwife be present. Unfortunately, none was available. There was a very uncaring nurse who at one point said to me "suck it up", 2 anesthesiologist, and a doctor who had a less than plesant demeaner (in my opinion). Oh well. I tried to be excited that at least my son would be here soon.<br />
So, at 3 pm Asher was held above my head. Tiny and purple. He did not make a sound. I kept asking "is he ok?" no one answered me. The anesthesiologist finally said "he is alright. They are cleaning him up". I couldn't see him at all due to the angle of the bed. My husband wasn't telling me anything. I don't think he knew what was going on. The doctors weren't telling me anything. "They are taking him to nicu" i wispered...practically to myself, since no one was listening to me. And then...i heard him cry...a forced cry...gurgling cry. Finally someone said "we will have to take him to the nursery to watch him"...i begged them to let me see him first. They did. They let us get a couple pictures with him and then took him to the nursery. I told my husband to go with our son. I was left there laying on this table to be closed up, where the doctor and the nurse and his assiatants all argued over political nonsense. No one spoke to me. Whatever. And i layed there, still not knowing what was going on with my son.<br />
I was then taken to recovery. A nicu doctor finally came in and told me he was breathing fast and had a high heart rate. Then a nurse came and brought me a picture. The only pictures i had seen at this point was a few on my husband's phone.<br />
A couple more friends came to sit with me in recovery. My husband was in and out checking on our son, i believe he also ran home to get clothes for the girls. This part is all hazy to me. I finally was taken to a room and a few hours later the best thing happened...a NURSE BROUGHT ME MY SON!!! I immediately nursed him...and he latched to my surprise. He was tiny...but he was ok!!! Asher Seth was 6 pounds 3 ounces and 19 inches.<br />
He was ok. And finally....that's all that mattered to me. I couldn't stop staring at him and thanking God that he was there and he was in my arms now and he was fine.<br />
God knew i could not handle another true NICU experience.<br />
And so far, i think his early arrival has been a blessing in disguise, since the kids are out of school this week. I have had to reschedule lots of appointments but it will all get done sooner or later. My husband was able to get a couple weeks off work to be home and help. My mom has been able to help with the girls. And ultimately i have my first and only son at home. The girls are in love. Our family is complete.<br />
<br />Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-53838462414570685632016-09-08T11:00:00.000-07:002016-09-08T11:00:19.566-07:00"Just" a mom...<div align="left" style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8px;">
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<span style="color: black;">"Mom, what are you?" my 10 year old asked. "I'm your mom." i answered. "No. I mean WHAT are you? What do you do?" she says. You see, she is in a new school. They have a "college and career" class. She wanted to know my "job title" apparently. So i thought for a minute and told her that I have a certificate as a nurse assistant, i also had a certificate in Medical coding and Billing, however I have not worked as either in several years. So, my final answer is I am a mom. She looks at me puzzled and says "great... Guess I'll just write my mom is just a mom". She then lost interest in the conversation and went back to watching a show on her phone.</span></div>
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<span style="color: black;">Ironically enough, last night in our small group at church, the topic was Identity or Spiritual Identity.</span></div>
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<span style="color: black;">And it got me thinking about something that crosses my mind every now and then, "what am I? Who am I? What am i doing here? Am i simply wasting my life?"</span></div>
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<span style="color: black;">As a child, I had all these dreams and hope for what I would be in life... A doctor, a teacher, and I also always knew that one day I would be a mother.</span></div>
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<span style="color: black;">However, I became a mother just after my 19th birthday. Shortly after that I was married. This marriage eventually ended after I had yet another child. Anyone who knows my family, knows that my second child has Down Syndrome and many medical concerns. This has required me to learn a lot to be able to properly care for her. My faith in God carried me through that pregnancy as well as many sleepless nights dealing with medical concerns from tube feeding to heart defects. Anyway, i went on to have another child and another failed marriage. And another child, a marriage that is on rocky terms, a couple of step children, and I am pregnant again (with what will be my first boy). That brings us to today... Nearly 11 years since I became "just a mom".</span></div>
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<span style="color: black;">After thinking about being "just a mom", it could be argued that there is no such thing as JUST a mom... A mom is a nurturer, a nurse, a short order cook, a taxi driver, a janitor, a laundry attendant, a personal assistant, and so much more... A mom can mold herself into a thousand different "titles".</span></div>
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<span style="color: black;">But there is more to it than that. I want my children to see me as a strong and confident woman who has her life "together", whatever that means. Whose life is really together anyway?</span></div>
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<span style="color: black;">So this brings us to the question, what does God say about WHO we are...WHAT we are?</span></div>
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<span style="color: black;">Just skimming through Ephesians 1, the key words that stand out to me are chosen, redeemed, and forgiven.</span></div>
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<span style="color: black;">Chosen is defined in the dictionary as "</span><span style="color: black;">having been selected as the best or most appropriate."</span></div>
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<span style="color: black;">Redeemed is defined in the dictionary as "to be compensated for the faults or bad aspects of"</span></div>
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<span style="color: black;">Forgiven is defined as "to grant pardon or remission of a debt or offense"</span></div>
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<span style="color: black;">Anyway, i began writing this and then had to stop as I had to attend to my children. One child just happened to turn on the radio and a Matthew West song was on;</span></div>
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<span style="color: black;">"</span><span style="color: black;">Hello, my name is regret</span></div>
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<span style="color: black; font-size: 12.8px;">I’m pretty sure we have met</span></div>
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<span style="color: black; font-size: 12.8px;">Every single day of your life</span></div>
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<span style="color: black; font-size: 12.8px;">I’m the whisper inside</span></div>
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<span style="color: black; font-size: 12.8px;">That won’t let you forget</span></div>
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<span style="color: black;">Hello, my name is defeat</span></div>
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<span style="color: black; font-size: 12.8px;">I know you recognize me</span></div>
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<span style="color: black; font-size: 12.8px;">Just when you think you can win</span></div>
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<span style="color: black; font-size: 12.8px;">I’ll drag you right back down again</span></div>
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<span style="color: black; font-size: 12.8px;">‘Til you’ve lost all belief</span></div>
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<span style="color: black;">Oh, these are the voices. Oh, these are the lies</span></div>
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<span style="color: black; font-size: 12.8px;">And I have believed them for the very last time</span></div>
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<span style="color: black;">Hello, my name is child of the one true King</span></div>
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<span style="color: black; font-size: 12.8px;">I’ve been saved, I’ve been changed, I have been set free</span></div>
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<span style="color: black; font-size: 12.8px;">"Amazing Grace" is the song I sing</span></div>
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<span style="font-size: 12.8px;">Hello, my name is child of the one true King</span><span style="color: black; font-size: 12.8px;">"</span></div>
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<span style="color: black;">So... I will just end this right here... I am a MOM. I believe this is what God wants me to be at this time in my life and he is still showing me how to do that right. I believe he wants me to know that I am important, i am needed, i am loved, and i am exactly where I am supposed to be at this time. </span></div>
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<span style="color: black;">The world wants us to think we are not good enough, that we are not doing enough, that we should be more and be better.</span></div>
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<span style="color: black;">God says we are exactly who he made us to be. </span><span style="color: black; font-size: 12.8px;">This is what I want my children to know about me and about themselves.</span></div>
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Do not let the world define you. Do not let the world determine your self worth. Do not let the world determine what or who you are.</div>
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com1tag:blogger.com,1999:blog-6527900400855528072.post-59818732150465113902014-11-04T12:22:00.000-08:002014-11-04T12:22:34.251-08:00Welcome number 4!!!On October 7 I went to the hospital for a biophysical profile due to baby being past her due date and my blood pressure being a little high. During the test, nurses noticed that her heart rate was dropping with every little contraction I had. So they admitted me overnight for monitoring. The next morning it was determined that it was best for baby if I had a csection due to her heart rate continuing to be affected during every contraction and she was showing signs of distress. So, as much as I wanted a natural birth, csection it was. It was much different than the emergency csection I'd had with Auri though, I walked to the OR, my midwife went with me and mixed me some essential oils to diffuse during surgery to help me stay calm. As soon as I walked into the OR, I started having flashbacks of the horror that came with Auri's birth. I was terrified I would feel the pain of being cut again. I was terrified her heart would stop like Auri's did. The staff, nurses, midwife, and the anesthesiologist were so great at keeping me calm and assuring me that it would be a better experience.<br />
Tiny baby Abigail Grace entered the world at 9:11 am on 10/08/2014. She weighed 6lbs 4 oz and was 19 inches long. The first thing I noticed was her head full of hair. She is beautiful and she brings back so many memories of each of the other girls when they were babies.Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-631827584349756412014-09-25T01:47:00.000-07:002014-09-25T01:47:54.995-07:00Happy day Auri!!!This time 6 years ago, i was sitting in a NICU staring at my precious Auriana Faith wondering what would become of her. She was born premature, wirh a serious heart defect, had to be tube fed, and was just so tiny and fragile. I prayed ever second that i would be able to take my baby home. God answered those prayers!!<br />
Auriana came home with us on October 2nd, 2008!!<br />
Since then, she has grown, had several setbacks, but has overcome everything. I recall the day i took her home, the NICU physician looked at me and said "now, we are letting you take her home like this because you are so eager to take her home, but remember, this baby has lots of problems. She may never eat on her own, she may never walk or talk like your other daughter... Just don't expect too much. After all, you're lucky she is alive."<br />
Yes, well, i trusted that God had another plan for my tiny little cabbage patch sized baby.<br />
And He did!!<br />
She is still tiny... At 6 years old now she is the size of a 2 year old. She weighs 22 pounds. Auri has had 3 open heart surgeries, numerous other procedures, and overcome many struggles.<br />
But, she does eat (weaned her from the feeding tube at 29 months old), she walks and talks and smiles!! She is a happy little girl most days and has recently learned all her colors, recognizes some letters and numbers, and basic shapes!! She is doing wonderful in the home school program i have decided to use to teach her... She has already exceded what she knew last year.<br />
Auri does attwnd regular speech, occupational, and physical therapy. But she has surpassed the age of 5, which the NICU physician told me was not likely and she is THRIVING!!! She loves life!!!<br />
This past Saturday we celebrated her 6th birthday with a few close friends and family. She had her Barney cake and she loved it!! She said all day long "its MY happy day!" "it's MY DAY!!" her birthday was actually last Wednesday, September 17, and every day since has been "her happy day". Her favorite things are Barney, signing time, mickey mouse, doc mcstuffins, and jake and the neverland pirates.<br />
She loves her new barney doll she got for her birthday.<br />
At her party, she sang all the words to "happy birthday"! Cutest thing ever!!<br />
This is our season of birthdays around here.<br />
My birthday is 3 days before Auri's and next we will soon be giving birth to a new addition who we have already named Abby, then Kylee turns 9 october 30 and then Lily turns 3 December 1!! A busy time of year around here!! I wouldn't have it any other way!!! I love my little girls and love watching them and seeing who they become...<br />
So for now Happy sixth birthday to my precious Auri!!! God definitely knew what he was doing when he gave me you!!!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-12075645807572381462014-08-25T18:50:00.003-07:002014-08-25T18:54:59.598-07:00nobody chooses online nonsense over cleaning... right?<span style="font-family: Georgia, Times New Roman, serif;">Yep... and here I sit again in front of the computer, scrolling through Facebook after I "just got on for a minute to check email" after I got the kids to bed. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Sink full of dishes and a pile of laundry stare at me as I type this... but I ignore it.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">The 3500 books and papers a kid pulled off the book shelf mid tantrum this evening is still laying here in the floor...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">but yet...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">I'm sitting here typing randomness into the blank screen on my computer.... after spending the past 20 minutes scrolling through nonsense on Facebook...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">why?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">well, because it is somewhat of an escape I guess... reality disappears into the computer screen..</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">isn't it like that for a lot of parents?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">So here's just a snip it of why I need 30 minutes to just let the mess disappear and pretend I'm on some little island in the middle of nowhere... at least one night (or more) a week the night goes just a little like this... turn off Tv to get kids in the bathtub... listen to the m scream how that was their FAVORITE SHOW and it WILL NEVER COME ON AGAIN and IM SO MEAN... yeah yeah... ok kid... that show has come on probably 50 times in the past week and I guarantee it will be back on tomorrow. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Meanwhile another child is in the bathroom because I forgot to shut the door... what is this child doing in the bathroom? oh, just dumping water in the floor. water from where? oh... just the toilet water... that's all. Great. this one gets bath number 3 today. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;">So, one kid bathed and dried and dressed and in the bed. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;">(and bathroom floor err... mopped with a towel...)</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">One more in the background still throwing a fit that the TV was shut off.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">The other comes running in to get her tub time... ok... this one loves the tub so she doesn't want to get out.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">We HAVE to get out. still have another one that needs hair washed tonight.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Ok... so this one gets out (after bribery) what? no I don't bribe them... never. so 2 down to bed. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Now it's past "bed time". The dilemma... do I fight to get this one in the bath tub or do I cave? hah... who wins? we compromise wash the hair over the edge of the tub. yes you had a bath last night. yes you can get one again tomorrow night. ok. finally. bed. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;">All. Of, Them. In. Bed.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So... back to the disaster zone that has taken over my living room...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Yes... it will get cleaned up...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">eventually...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I know other mothers can totally relate to this scenario, right?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">come on... I can't be the only one to not have children who are angels all the time...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">hah...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">funny thing is when they are gone... even just for 1 night... I have no idea what to even do. In fact, I think I miss the chaos and commotion that has become my life...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">So... back to reality now... the dishes will probably get done tonight, the books will get put away... lesson plan will get done for school tomorrow.... then I'm going to bed to start it all over again in the morning... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">oh, did I mention... I'm also 8 months pregnant and I home school my special needs child? Yep. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I am going to envision "happy thoughts"... Rainbows and lollipops and fairies that magically clean my house for me... maybe our day will be filled with sunshine tomorrow... yes.... sunshine and happy thoughts and everyone will listen and no one will complain. That's it.... </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">"Just think of Happy Thoughts and you'll fly" - Peter Pan</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">"<span style="background-color: #fcfae7; color: #333333; line-height: 18.200000762939453px;">If you want it, you must will it. If you will it, it will be yours." - The Mighty Sven</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: #fcfae7; color: #333333; line-height: 18.200000762939453px;">We will have a good, calm day tomorrow.... we will have a good, calm day tomorrow... we will have a good, calm day tomorrow...</span></span><br />
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<br />Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-28291704566247454512014-06-04T17:07:00.002-07:002014-06-04T17:07:22.776-07:00Blessed...Blessed.... that I AM!!<br />
Sitting here reflecting on my recent past and realizing how very blessed I truly am, even though it is hard for me to see at times through all the daily stresses and feelings of being just exhausted and overwhelmed.<br />
I have been blessed to be called to be a mother! This is something I often take for granted, sadly. God has gifted me with 3 beautiful little girls... each with unique qualities.<br />
Kylee--Such a bright girl-- I am starting to realize that often she is just misunderstood. She seems to see things differently. Kylee remembers things from years past as if they happened yesterday. She remembers everything she reads and she can see stories in her head... and TV shows... and songs... he can vividly recall every line. With the right tools she will be able to use this gift for good in the future.<br />
Auriana--my little fighter--doctors told me the whole time she grew in my belly that she would surely not live and if she did she wouldn't live long and would never walk or talk. She has proved them wrong. She walks. She talks. And so much more. She also has memory like her big sister, that is often misunderstood. Auri remembers dances that she sees in songs from Signing Time and Barney. She replays these in her head and acts them out all the time. I only wish I could learn to channel this gift into teaching her other things. I truly believe she will continue to prove the world wrong. Even I do not know the extent of what she can learn and how she can succeed.<br />
Lily--Such a sweet caring girl--a little ray of sunshine in the morning, she wakes everyone up (much to early at times) with "good morning. I love you." with a huge smile. This wake up call is often met with a much less energetic "Liilllyyy" from those she wakes. This and her truly caring spirit and her concern for those around her... these alone will get her far in life. I can not wait to see what the future holds for her.<br />
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I take for granted every day what great things my girls have brought to my life!<br />
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I pray for the future that I can see the blessings in front of my eyes and not focus on all the difficult things.Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com1tag:blogger.com,1999:blog-6527900400855528072.post-70315264285058582952014-04-28T02:57:00.002-07:002014-04-28T03:01:38.151-07:00Life is life....So, I used to write all the time. I used to have so much to talk about.<br />
Lately, however, I feel like everything just blurs together. Life is such a fog.<br />
Life.... is just.....well, life.<br />
<br />
There are months and months between my posts now.<br />
Since August 2013 we've past Auriana's 5th birthday, Buddy Walk, Kylee's 8th birthday, Halloween, Thanksgiving, Lily's 2nd birthday, Christmas, several snow days this year, Valentines Day, Auriana being hospitalized for pneumonia, me finding out I'm pregnant again, and most recently Easter! That's like a LOT!!<br />
Why do I find less and less time that I have "me time" to write?<br />
Well, I guess because I am living life and trying my best to be a good mother to my girls.<br />
I take for grated the little things I should be making note of for the memory books. I feel like I miss so much just by always being on the go. We truly are always going somewhere. And then we get caught up in the importance of petty things...laundry needs done, dishes need done, clean the house, clean the car, etc etc.<br />
I want so badly to slow this life down some and just stop to appreciate and enjoy the small memories of my children.<br />
<br />
We went to the beach just a few weeks ago. For about 5 days it was as if we finally had a break.<br />
We could just stop.<br />
We could just relax.<br />
No one was complaining, no one was whining (for the most part), there were no major tantrums.<br />
Everyone was happy. Smiling. Even though that water was freezing, just the fact that we were on the beach and the simple sound of the waves was so relaxing.<br />
I wish it were possible to live life like that... relaxing in the sand on the beach, watching the kids build sand castles and make sand angels, listening to the sounds of waves and laughter.<br />
Sometimes I have ideas cross my mind... How wonderful it would be to just live in the middle of nowhere on some little self-sustaining farm with no appointments, no "time to be at school", no schedule, no drama. Just take my little girls and run away from everything.<br />
However, that is not reality.<br />
<br />
Reality is life is hard, life is full of drama and stress, life is full of expectations, disappointments even.<br />
But, if you think about it all... life is also full of joy, life is full of love, life is full of hugs and kisses.<br />
I just want to stop focusing on everything that is hard.<br />
And start focusing on the joy. The laughter. The smiles on my babies faces when they are playing in the yard. I can not wait until school is over for the year so when everything at home becomes overwhelming we can just pick up and leave the mess. leave the stress. Go somewhere... anywhere... the park down the road... the lake with the ducks.... some place relaxing.<br />
I plan to make more of a focus on the fact that life is not perfect. life does not have to be perfect.<br />
When I take my kids places this summer, I am going to leave all the imperfection in life behind and only take happiness and relaxation with us.<br />
I'm going to sit at that park and watch my babies run and smile and laugh.<br />
Not even allow the thought of "oh, but we have to get home to clean the mess." The mess will be there. There will always be messes.<br />
<br />
My babies will only be babies for a short while.<br />
I'm already seeing that with Kylee. She is 8.<br />
EIGHT.<br />
In 8 more years she will be driving.<br />
I so want to just enjoy the joy in her now, while I still can.<br />
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That poor child is more like me than she even knows. She has such a hard time with dwelling on things in her life and it causes her so much stress and anxiety.<br />
I don't feel like I've given her a very good example of how to handle stress either.<br />
Hah. There's me another summer goal.<br />
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Seriously... if you see me out and about and my children and screaming and I'm not saying a word... don't look at e like I'm crazy... well, do. Because, maybe it's crazy to just not even care what people think anymore. To not even care if you make it someplace on time or make it at all for that matter. But I am so sick of dwelling on being places on time and trying to please people and trying to keep my kids looking "perfect".<br />
Guess what people! News Flash! We. Are. Not. Perfect! And even bigger news flash.... It. Does. Not. Matter!<br />
Kids cry... just a fact. Kids who have trouble processing their senses and emotions... well, they cry more. Who. Cares. ? Not this Momma. Not anymore.<br />
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I think about what we've been through, these girls and me.<br />
Auriana was born with so many complications. That was the focus for so so long. Get Auri's heart fixed. Get Auri to gain weight. Get Auri to eat without a tube. Guess what! We did that! All of that! She eats, she talks, she walks, she goes to school, she makes choices for herself!!!<br />
I no longer care about what her testing results are. I do not care if she can ever write her name. I want her happy and healthy. I want her to go to school with typical ( for her) peers. I see her every day. Auriana fits in perfectly with 3 and 4 year olds. She is 5.<br />
Who care.<br />
The thought has crossed my mind to just forget about the reality of the public school system ever realizing and recognizing what she is capable of and focusing on what's important and not "making sure children like this are as close to functioning on a normal level academically".... I want her to fumction on a normal level socially. That's all I want for her. I. Do. Not. Care. if she writes her name, if she reads, if she can take a standardized test. If she can pass the stupid cognitive and physical evaluation that does not give accurate results of what a child knows. I seriously have thought about just taking her out of public school and putting her in a typical preschool with typical kids. Put her in a 4 year old church preschool.<br />
Really would that be so terrible?<br />
Would I be a horrible mother if I just say "let's put kindergarten on hold a year and just put her with typical kids." I already take her to PT, OT, sensory therapy, and Speech. And what good is it doing her to be put in a kindergarten class that is contained with nothing but special needs children?<br />
Can a typical preschool handle her? She does have some sensory meltdowns and she doesn't verbalize as well as some children. But, there are typical kids that are the same way.<br />
I just want her to be happy and I am tired of me feeling stressed and like public school does not have a good fit fr her. They don't. We have been blessed with wonderful public school preschool teachers, but I just don't know that the public kindergarten offered is the best fit for her right now.<br />
Just a thought.<br />
<br />
I am so thankful for Lily and I feel like I take her for granted also. Lily is my baby.<br />
She is the only "morning person" in the whole house. She wakes up every morning saying "good morning Kylee, I loves you.", "good morning Auri, I love you.", "good morning mommy, I love you." and then "good morning sun!"<br />
I wish I had that outlook in the mornings. I wish I could just be happy to wake up.<br />
I hope she never looses that.<br />
Lily seems happy about the "baby in my tummy", but I hope that once the baby is out she is just as happy.<br />
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My fear with each of my children is that a new baby makes them feel that they are no longer the focus. I hate that. I want them each to know how much I LOVE THEM! I truly love all of them. through each of their differences and each of their challenges, I LOVE them!<br />
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I think about the way God loves each of us. His children. We are not perfect. We are difficult to deal with at best. We don't listen. We disobey. We yell at Him. We complain. We don't appreciate Him or what He does for us. But, still. He love us!<br />
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So, on that note....<br />
It is now time for the start of my day....<br />
Time to live life.<br />
The kids wake up in less than an hour.<br />
I want to wake them each up with "God morning, I love you!"Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com1tag:blogger.com,1999:blog-6527900400855528072.post-35587950154818288822013-08-06T20:53:00.000-07:002013-08-06T20:53:01.110-07:00Back to school...Well.... summer is over again. "Back to school day" was yesterday. I have been a lot busier than normal since I am working now as a CNA. I haven't worked, until now, since Kylee was born over 7 years ago. I had always intended to be a stay at home mother and stay home to raise my children. Well, that plan didn't work out so well, I guess. Anyway...THIS was the very FIRST "back to school day" that I have not been the one to drop off my kids and walk them in to school. I actually handled it a lot better than I thought I would. And both Kylee and Auriana seem to enjoy their classes and are doing well at school so far. Lily, I'm sure, misses having her sisters around all day... and (i hope) misses her "Momma" too (at least a little). She has been with her "Grandmother" though this week who she loves. <br />
Oh.... more life changes......only for the better. I said yesterday to someone "I don't even feel like I'm in control of my life. All this is just happening and I have no choice but to just go with it".... she said "Because you're not in control of your life, God is". Well... there is that!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-81518560472342756872013-06-05T22:30:00.001-07:002013-06-05T22:30:48.782-07:00Shame on Chick-Fil-A.... Now, don't get me wrong... I LOVE Chick-Fil-A and everything that CFA stands for, which is part of the reason I say shame in this circumstance! <br />
Today, I was slightly disappointed in Chick-Fil-A...<br />
So, let me explain why... We met some friends at a local CFA for lunch and to let the kids all play together. Now, as many of you I am sure are aware of, kids can trade their "toy" from the kids meal for an ice cream. So, my kids were trading their toys for an ice cream. But my friend's kids are whey protein intolerant which means that they can not digest whey protein enzymes in non-cooked dairy products (basically they can not have uncooked milk, ie. Ice Cream!). So, we explained this to the assistant manager after we tried to trade their books for cookies instead of ice creams and were told that was not an option. I asked if it was an issue of money... according to the menu, the ice cream cone is $1.19 and the cookie is $1.09.... hmmm.... cookie is 10 cents LESS... so what is the problem?, I asked. She said it was "against their policy". Funny, since I had just done this at a different CFA location the week before with no problems at all!! Ok, so it is you policy to NOT accommodate a food allergy with a viable alternative that is already on your menu and is of equal or lesser value? Wow! Ok! That makes perfect sense! Then this girl proceeds to tell me in a smart-ass tone "Our cookies have milk in them"... Um... hello... I just explained to you that the proteins in the cookie have been broken down already by the heat, the ice cream they haven't!! So, I explain it to her again... she says "wasn't aware of that, but still our operator has chosen not to allow that." The American's With Disabilities Act recognizes food allergies as a disability and requires that "reasonable accommodations be offered." So, how can the operator of this specific Chick-Fil-A establishment choose to not follow a federal law?!?!?! I don't know, but hoping to find that out soon..... just saying....Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-2041235333260174372013-02-01T10:33:00.000-08:002013-02-01T10:44:12.093-08:00CHD....CHD.... three little letters... C. H. D. <br />
What does it mean?<br />
Congenital. Heart. Defect.<br />
A Congenital Heart Defect is a heart defect that is present at birth. There is no cure, only treatment through medications and surgeries. 1 in every 100 babies born has some type of congenital Heart Defect... ranging from mild arrhythmia and murmurs to major complicated defects requiring several tedious surgeries to enable the child's heart to somewhat function normally. <br />
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We have experienced our share of the complications and strain a CHD can put on a family. <br />
Auriana Faith was born on September 17, 2008 after I spent several weeks in the hospital on monitors due to umbilical cord absent flow and pre-eclampsia. An ultrasound around 18 weeks revealed that Auriana had a severe heart defect known as AV Canal Defect and possibly a chromosome abnormality. When she was born 5 weeks early, Auri weighed just 3 lbs. 10 oz. We found that she had Down Syndrome and a heart defect within hours of her birth. She got her first echo-cardiogram at just 1 day old! We were told that Auriana had <b>Complete AV Canal Defect-- No walls in her heart at all</b>!! All her blood mixed up together. She was too weak to eat and had to be NG Tube fed. She had her first open heart surgery around 4 months old. In this surgery, the surgeon went into her heart to build the walls out of gortex patches. She did well and was in the hospital about 10 days. She never learned to eat properly though and was tube fed until she was 29 months old. We were told that Auriana may need another open heart surgery at 10-15 years old to replace the gortex. She was followed by a cardiologist every 6 months. In July of 2011, however, we noticed her tiring more easily and turning purple often. I called and made her a cardiologist appointment. When her cardiologist did an echo he noticed that she had <b>narrowing in her aorta-- aortic stenosis</b>. She has another open heart surgery-- subaortic membrane resectioning--in September of 2011, just before her 3rd birthday! They left some of the membrane intact thinking that it was better to leave some since the conduction system of the heart is located in this area. The surgeon explained that he didn't want to risk her needing a pacemaker placed and wanted to give her more time to grow. He said she would probably need another surgery in 3-5 years to open up the aorta some more. Just a few weeks ago Auriana begin having chest pains and after a cadiac cath was done, we were told that the narrowing in Auriana's aorta was measuring around 80 percent (which was higher than it was prior to her previous surgery just 15 months ago!) She also had developed narrowing all the way up into her left ventricular outflow tract <b>(LVOTO- Left Ventricular outflow tract obstruction)</b>. She needed surgery, once again, within the month! We went into this surgery on January 25, 2013 with an extremely high probability of her needing a pacemaker and with an expectation for a 6-8 hour surgery. Just 4 hours after surgery began, it was completed and Auriana amazingly had her own heart rhythm!! We will be heading home tomorrow, January 28, just 3 days after surgery!! We are hoping not to need anymore surgeries until the gortex replacement around 10 to 15 years old. Auriana has been a little trooper though! She is so strong and has taught me to be thankful for the little things in life! Auriana has a 7 year old sister, Kylee, and a 1 year old sister, Lily Hope who have been a huge support to her during her surgery! We thank God daily for being with Auriana and allowing us the blessing of raising her, Kylee, and Lily!! My life would not be the same without my 3 little girls in it! God continues to bless us through Auriana on a daily basis! <br />
Today marks 1 week exactly since her THIRD open heart surgery! Last week at this time I was sitting in a waiting room waiting on news from the surgeon. This morning I woke up to my precious Auri smiling and playing with toys in her bed! Her smile through all her pain says it all! She is just happy... always....she will be in pain but still says "I so happy" as she signs happy as if she's doing the 'chicken dance' and shows her adorable grin. <br />
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CHD has taught me to accept the things I can not change and to slow down and enjoy the precious time I have with my children.<br />
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I have met so many people through our journey with CHD who were not lucky enough to know before their child was born that their baby had a heart defect. I was lucky enough to know and to be prepared and have time to research doctors who could best help her. Most CHDs are visible on ultrasound. And most CHDs are detectable at birth with a non-invasive test called pulse-oximetry. The pulse oximetry test measures the amount of oxygen in the blood and only takes about a minute to read. <br />
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This month is all about hearts... valentines day is this month, and it is also CHD Awareness month. Remember and honor all those little warriors living with Congenital Heart Defects! Most of them have gone through so much more than any of us adults have ever endured and they do it all with a smile! <br />
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The hospital my daughter has her surgeries at gives the children Beads of Courage. They earn a different bead for each procedure, test, and surgery. This is Auriana with her necklace. You can see by the number of beads just how much she has gone through. These are all just from her hospital stays. <br />
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com2tag:blogger.com,1999:blog-6527900400855528072.post-23316934431601946522013-01-03T04:49:00.001-08:002013-01-03T04:49:13.663-08:00Another year gone... goodbye 2012... a new startAs I sit and reflect on 2012 I think of how much has changed in just this year. Where we all are now. It may not look like we have gone anywhere over the year, but so much has changed. Just a few to mention...<br />
In 2012....<br />
January started out with a 1 month old, 3 year old who had just learned to walk, and 6 year old who was in kindergarten just learning to read.<br />
Today, I have a 1 year old who is walking and talking, 4 year old who walks like a pro and is saying so many words I thought she never would, and 7 year old pro reader in 1st grade!! Now, that is pretty awesome!!<br />
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My 2 year long divorce process from Michael was finally completed and I am free from him, aside from the fact we share 2 children together. Kylee and Auri visit with their father every other weekend and some holidays. Every time they leave is so stressful and takes so much out of me, and them, although they are adjusting to this change much quicker than I am. It is just something we cannot control, but God is in control and we have to trust him. <br />
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Another big thing.... Chris and I are married!! The LAST DAY of 2012 we decided to get married and there was nothing standing in our way. Although many people didn't agree and didn't support our decision, we felt it was best and the kids and we are happy!! This seems so long ago, although it was only 3 days. The minute we were married, I felt like our lives just fell into place. Like this was the missing link and why everything has been so off balanced for so long. <br />
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Our goals this year are that we will all learn to be completely respectful to each other in our family and follow God's will entirely, that we will see to it that we have family time every day and include a daily devotional or Bible reading in this special time together, I aim to complete a CNA training program and become a CNA, Chris hope to find a better full time job with insurance benefits for our family, we will fix Lillian's name (soon and hopefully this is a simple task), we have a goal of being completely self-sufficient and having all our bills paid off by summer and hopefully moving into a place of our own this summer..... <br />
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this seems like a lot, but we can do it with the help of our all powerful Lord!! Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-17082248868648997822012-12-01T04:24:00.000-08:002013-01-03T04:33:07.091-08:00Baby Lily is 1!!Lillian Hope, you are a year old today. It does not seem like it has been a whole year since you came to us. I was terrified at how I would manage with 3 children and only 2 hands, but we have made it little girls, a whole year! Now you are taking steps, little Lily Hope, and I am just as amazed to watch you learn to walk as I was both your sisters! I love hearing her little voice as you make your first words. Although communication and eating have been your strong points since birth :) You have always known how to get whatever it is you want and how to get your point across. You are very particular about how you want things, but that is ok. Happy 1st birthday baby girl!!<br />
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-28814317656743481092012-10-30T06:00:00.000-07:002013-01-03T04:24:40.879-08:00Kylee is 7!!It is the morning of my oldest daughter's 7th birthday... I sit and reflect over all that I have watched her go through and accomplish in her 7 little years. She is am amazing little girl who is growing up so fast. I think back to the day she was born and the feeling of pure love I felt as she was slipped into my arms. Within minutes of entering this world she gave out a smile that could brighten a room in seconds. I recall the gaze in her eyes as she stared up at me... HER MOTHER... oh what a feeling, to be a MOTHER! I didn't know what I was doing at all, I was barely 19. But Kylee would teach me, she was a relatively easy baby and was so patient with me. I nursed her shortly after she entered this world and it was pure harmony how she knew exactly what to do and I fumbled around trying to figure out how to hold her "properly". Little did I know, all those special holds they teach you, do not matter because the baby knows how they want to be held and will wiggle and nuzzle to be held how they want. <br />
Kylee taught me how to be a mother. Now, since I am mother to 3, I know I made so many mistakes with Kylee and I so wish I could go back and change some. But then, I probably wouldn't. The mistakes are what shape us into who we are. <br />
Still today, as I look at Kylee, I am in awe at how beautiful she is and how she is just perfect in every way (to me anyway ;))<br />
Kylee was born the day before Halloween, I sent her father out to the store to find a tiny costume for her to wear the next day... he returned with a pumpkin shirt. How funny it was to awake the next morning (of course doped up on pain meds) to find a pumpkin baby and kitty cat nurses.<br />
Happy 7th birthday to my beautiful firstborn baby girl!! I can not wait to see what the future holds for you.<br />
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-89630549628789180492012-09-17T10:09:00.000-07:002012-10-01T11:07:03.435-07:00Happy Birthday Auriana!Happy 4th Birthday to my baby girl, Auriana Faith! I am so blessed to say I am Mommy to this special princess! <br />
As I think back to the day she was born 4 years ago, my head fills with emotions... emotions of fear and joy all spiraling together. The day Auriana was born was one of the happiest days of my life! You see, I had spent over 3 weeks in the hospital on bed rest. Doctors were constantly monitoring her growth and her heartrate and I had fetal stress tests daily. I was exhausted from the specialists telling me what all may or may not be "wrong" with my baby. I remember <i>that</i> day very well, though. I woke up that morning, still in the hospital. The nurse came in with the fetal stress test. The results showed that "the baby" was not showing much movement. An ultrasound was ordered. The ultrasound tech came in and measured "the baby" on the screen and did a weight estimate. I recall asking her, as I did every time she completed an ultrasound, "how much does she weigh?". Every time, she had only gained about an ounce. An ounce was good, though, because it meant that she was still growing. <br />
I had been told months earlier that Auriana would be born with a severe heart defect and would need surgery within her first year of life and it was imperative that she be born as close to her due date as possible and weighing as much as possible. Not long after, the doctors also stated that she appeared to have "a form of Trisomy" and none of them seemed to think it was one that was compatible with life. In fact, the main MFM specialist who was over my care was dead set that "this baby would be born with Trisomy 13 or 18". I refused the amnio because Auriana also had a in utero condition called "umbilical cord absent flow of diastole" meaning that the umbilical did not allow the proper amount of nutrition to flow in to the baby, like a hose with a kink in it. This condition brought the risk of loosing the baby during an amnio up to 50/50...too high for me! This baby was a blessing and her fate was in God's hands. I had Faith that she would be ok and that would be her middle name.<br />
So, back to the morning after the ultrasound... The ultrasound tech responded "I'm getting a weight of 3 lbs 8 oz. And I'm seeing what looks like a shadow on the right side of the brain. But, it is probably a mistake since it wasn't like this yesterday. Let me go discuss the findings with your doctor. We may repeat it." <br />
The weight had dropped by a few ounces since the last scan just a few days earlier. I tried not to panic, finished cross-stitching the bib I was making for Auriana and ate lunch. I remember my dad called me from his deployment in Iraq at some point in between what happened next. What happened next was a nightmare. The MFM specialist came into my room. It was just me. My mother and Kylee had just left after stopping by for lunch. The doctor looked at me and said "have you had a chance to speak with NICU?" I told her that yes, we had spoken the them last week. Then what she said next will never leave my memory... "Well, I doubt you will need them anyway. You are being induced today and this fetus is probably not going to survive. It just has too many issues, and now it's stopped growing" and with that she left the room. I was stunned. I called my mother crying hysterically. She came back and had the doctor come back and explain it to her and I know she argued with the doctor quite a bit. Some women from church came by. I took a shower. A preacher came by and prayed with me and when he asked "what should I pray for?" I said "pray this baby has Down Syndrome and not one of those other things." so THAT was the prayer "LET THIS BABY HAVE DOWN SYNDROME". The rest is really just one big blur- I know I was induced and then I remember the monitor kept beeping and I saw on the screen a heartrate of 45 at one point. The nurse reached over and turned it off. I said "is that the baby?" she didn't answer until the doctor walked out of the room. She leaned over and told me "that is your baby's heart rate. The doctor has ordered us to let the baby pass peacefully." I shouted "WHAT?!!! SOMEONE BETTER GET IN HERE AND DO A C-SECTION!!" After that demand they had no choice, emergency c-section it was! They prepped me and began to cut within 10 minutes. The surgeon said at one point "it's at 30, there's no point." referring to Auriana's heart rate. I wasn't even completely numb and felt the first cut. NICU was there. I remember saying "you better save my baby". Within a few minutes she was out with a cry like a little cat. She kicked the doctor on her way out. She was a FIGHTER!! <br />
NICU took one look at her and said "Oh my.... mom was right. I think she just has Downs" <br />
I touched her for 2 seconds before she was rushed out... she was very purple and had really low oxygen. She was 3 lbs. 10 oz. and 18 inches long! She was breathing and ALIVE!! 8 hours later a nurse came in to tell me that she had Down Syndrome and I screamed "THANK GOD!!" she looked at me like I was nuts. But, I knew that with Down Syndrome she had a chance to live. I was wheeled down on a stretcher to the NICU a few hours later to see her. She was tiny and precious. She would have to fight but I knew she could do it! She did have the heart condition and Down Syndrome and had a long road ahead. <br />
Auriana Faith is now 4 years old, has had 2 open heart surgeries, a heart cath, ear surgery, wears hearing aids and ankle braces.... but she is a pure JOY!! She is amazing and she is my daughter! She is little sister to Kylee and now big sister to Lily Hope!<br />
Auriana now does everything the doctors told me she never would, she walks, talks, eats, plays just like other kids, gives big hugs and kisses, and even sings in church children's choir!! <br />
I thank God for all three of my precious little girls!<br />
Happy Birthday Auriana! I love you and am so thankful for you just the way you are!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com1tag:blogger.com,1999:blog-6527900400855528072.post-25347372227438892782012-09-09T19:57:00.000-07:002012-09-09T19:57:43.146-07:00SchoolSo, it is hard to believe that it has been a whole MONTH since Kylee and Auriana started their new school! Kylee is a first grader this year!! So proud of her!! And Auriana is in the special education pre-k class! She loves it! Auriana is the only student in her class so she is spoiled. She has been wearing her little hearing aids to school and is doing great with them. Kylee has been having a harder time adjusting. She is used to being is a small Christian school with 12 kids in her class and this school is a lot bigger and she has 24 kids in her class... a big change. I just keep praying that she will adjust and have a great year! Kylee will be starting Girl Scouts this week, so hopefully that will give her a sense of "belonging" in this school.<br />
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com2tag:blogger.com,1999:blog-6527900400855528072.post-47606462726853295382012-07-18T21:42:00.004-07:002012-07-18T21:52:50.651-07:00Inside the mind of my kids...What are you thinking? <br />
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I would really love to be able to glance into my children's heads periodically throughout any given day and see exactly what they are thinking. Wouldn't you, moms? Wouldn't you just love to see what your child was thinking when they poured soda on the rug in a well-thought-out, circular pattern resembling a crop circle? Wouldn't you love to see what they were thinking as they pulled the guinea pig out of his cage and proceeded to throw the pine bedding throughout your bedroom (where at least there is hard flooring unlike other parts of the house)? Wouldn't you love to see what they were thinking as they lined up cheerios across the living room floor? Wouldn't you love to see what they were thinking when they painted the couch with chocolate pudding and a glaze brush? Wouldn't you love to see what they were thinking while they sped their sister's wheelchair through the house and then brake checked it screeching to a halt?(oh, wait, that was just at my house. lol)<br />
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Something I would love to see is how my daughter with Down Syndrome processes information. Sometimes I watch her try to figure something out and you can almost "see" the wheels in her brain turning as she starts to "get it" and then you can see each little step to her processing that little bit of information. I watched her today as she sat trying to replicate every move her sister had made with her toy castle and little people. Auriana sat down at the little toy castle, just as Kylee had left it. She picked up the little princess doll, looked at it closely, then sat it down. Then, she picked up the little prince doll, looked at it closely, then sat it down. Then proceeded to do this with each doll that Kylee had played with, in the order she had used them. Then I watched her as she placed each doll carefully in the exact places Kylee had put them and then she would mumble little sing-songie phrases to herself as if trying to say or sing whatever Kylee had said or sung. She had been sitting in the floor watching Kylee the whole time and had remembered everything she had done, every little move she made, to the mark. She looks up to Kylee so much! Well, I wasn't the only one to notice this... Kylee noticed too. Auriana began singing this little mumbled "nah gah nah nah gah nah gah nah nah" to the slightly off tune of "Bippity Boppity Boo" from Cinderella. Kylee, who was watching her little sister but trying to appear not to be, stood up and walked over to Auriana at that point and began singing the song and making the prince and princess dance as the castle. Then she looked at me and said in amazement "Mom, Auriana was doing exactly what I did with the castle. That's so cute." This is one of those "proud mom" moments!<br />
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Of course, later on in the evening Auriana started singing her own song while we were dressing for bed and Kylee swore that she said "A B C D E F G come on baby shake your booty" Hahahaha.... Kylee and I both got a good laugh out of that! <br />
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It is a proven fact that individuals with Down Syndrome do have slower cognition than that of the average person, so it is understandable why I can sometimes watch my daughter figure something out as if in slow motion (pick something up, look at it, think what to do with it, then complete the action. Rather than all in one continuous graceful step.) Now, there has been talk in the news lately and in the medical world about drugs that can improve cognition in individuals with Down Syndrome. For example, in <a href="http://www.sciencedaily.com/releases/2011/08/110802091040.htm">this article</a> talks about a researcher who is using Alzheimer's drugs to treat and help improve memory in individuals with Down Syndrome. And the Down Syndrome conference I attended back in the Spring discussed another drug trial which is taking place as stated <a href="http://www.dsrtf.org/page.aspx?pid=504">here</a> using a specifically formulated drug called RG1662. <br />
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So, I have started thinking. Even if they could, without a doubt, improve the memory and cognitive functioning of my daughter (who tests at about 2 years behind her age level), would I want it? If her cognition were improved, would she have the same sweet disposition about her? Did God create her with the cognition she has for a purpose? Is it "who she is"? I guess the answers to those questions I would have to be able to see inside of God's mind to answer. <br />
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Sometimes I feel like Auriana knows things that other people don't know because of how she is. Like she is closer to knowing the secrets of the world than we are. As if she can sense spiritual presence. I believe this is due to her inability to reason it all away. I believe that a lot of things we reason away before we let ourselves believe it, but since she doesn't have that ability she knows more.<br />
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There is only one person who can see what we are thinking!<br />
Psalm 139:4<br />
"Even before a word is on my tongue,<br />
behold, O LORD, you know it altogether."Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-26623147307307653552012-06-20T13:53:00.000-07:002012-06-20T13:53:20.872-07:00Summer 2012 alreadySo.... it is Summer 2012 now and a LOT has happened!! Kylee graduated Kindergarden! Congratulations to my big girl!! She is so smart and is reading at an amazing level now! She will be going to a new school next year, and so will Auriana (I am not sure how I feel about this, lol)
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Our summer so far has been pretty hectic, but fun too. We have something going on every Monday, Tuesday, and Wednesday every week... ranging from therapy to movie club. We have already gone to VBS and Panama City! Auriana is doing aqua-therapy again this summer and we've added Kylee to swimming lessons and me and Lily Hope just hang out at the pool during all this :)no complaints there, right.
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Auriana has graduated from high full AFOs(ankle braces up to knee) to low SMOs(ankle braces just over her ankles) so I am so proud of that too! They are adorable little pink and black snake skin print that Kylee picked out for her. This means that walking on her own is strengthening her leg muscles and tendons! (Boo to those NICU docs that said my baby would never walk and her toes would be stuck to her shins forever without corrective surgery! Wish they could see her now, and guess what... she never had surgery on her ankles!) God is so good!!
So, just a short little update amidst our chaos but hopefully I'll have some time to do a longer update soon ;)Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-81163297758551689752012-02-02T17:39:00.000-08:002012-02-02T17:39:45.553-08:00Auriana is walking!!!Auriana is walking now... on her very own.... WITHOUT the assistance of a walker!! She is really<br />
trying to be the big girl since her little sister was born :) I am very proud!!<br />
<iframe width="420" height="315" src="http://www.youtube.com/embed/XQ7OeW-bh5M" frameborder="0" allowfullscreen></iframe>Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-12616263299881847882012-01-06T17:44:00.000-08:002012-01-06T17:44:16.717-08:00looking back at 2011As I sit and think about my 2011, I realize how much God was truly watching out for my family. Although it may not have seamed like it at the time, He was with us all along. <br />
Major events that God got us through...<br />
In January, God continuously provided me, Kylee, and Auriana with food, warmth, and shelter.<br />
In February, God kept Kylee safe during the weekend she was taken from me, and He returned her home safely to me, and continues to do so every other weekend while she is away from me.<br />
In March, God showed me to trust him as I was given custody of Kylee and Auriana. I have always been the one to take care of them, but the mental abuse I had been through by their father had me so worried about what the outcome would be. <br />
In April, God allowed me to witness Auriana's first real independent steps.<br />
In May, God gave me the instinct that maybe Auriana's heart was not right and I listened and took her to the cardiologist against the recommendation of other doctors, only to find that the area between her aorta was closing off very quickly and surgery was needed very soon.<br />
In June, God gave me peace as I learned that the baby I was pregnant with was to be another girl and that she did not have any visible heart defects on the ultrasound as I had feared.<br />
In July, God blessed me with the ability to take my girls on many special outings including the zoo and aquarium.<br />
In August, God protected Auriana through her heart cath procedure. And God allowed Kylee to go back to school with the friends and teacher that she loves.<br />
In September, God protected Auriana through her second open heart surgery and has given her strength and healing. Auriana turned 3 years old this month as well.<br />
In October, God allowed me to throw Kylee an amazing 6th birthday party complete with a hayride. Kylee absolutely loved it.<br />
In November, God allowed us to find a church that we have truly been able to connect with and has something for all of us.<br />
In December, God allowed us to welcome Lillian Hope into the world on the 1st. God provided my children with a wonderful Christmas. God has allowed us to be surrounded with amazing friends.<br />
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These are just a few of the times I can think of that I truly saw God at work, although He has been with us every day, every hour, every minute, every second.... <br />
I can not wait to see what 2012 has to bring and what way God will reveal Himself to us!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEzYvxJtPO6tgPF154ivvwSF01dhYuliLQbsk6v_HmuWo3b9_FEwNkD3oJ1C7n1eXG6uUaG4qLy9KBE-TJkY1YhvH80E-jw9qBS38u2_BC1ueM0bt0yryXJs5aTvveeV2J7awcZL2BUgH0/s1600/DSCN5946.JPG" imageanchor="1" style=""><img border="0" height="240" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEzYvxJtPO6tgPF154ivvwSF01dhYuliLQbsk6v_HmuWo3b9_FEwNkD3oJ1C7n1eXG6uUaG4qLy9KBE-TJkY1YhvH80E-jw9qBS38u2_BC1ueM0bt0yryXJs5aTvveeV2J7awcZL2BUgH0/s320/DSCN5946.JPG" /></a></div>Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-43397248012636833322011-10-29T19:42:00.000-07:002011-10-29T19:42:38.856-07:00This time, 6 years ago!6 years ago right now at this very moment I was checking into Southern Regional hospital in labor with Kylee!! She was born 15 hours later at 1:30 PM on October 30. <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBGZsMiJYGed7FgVT-EocEYVgYyYI-rFM8gzuiAf5j62rTdvkbW9cwoh-_Hq5md0uay4QQhAS0AFARkZqCqlD0rBUjIITu4YJ01NGSTa4QVXpl-jkZOOLtZLiKET2awjA3JUq4mgPwjUXt/s1600/DSCN5671.JPG" imageanchor="1" style=""><img border="0" height="240" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBGZsMiJYGed7FgVT-EocEYVgYyYI-rFM8gzuiAf5j62rTdvkbW9cwoh-_Hq5md0uay4QQhAS0AFARkZqCqlD0rBUjIITu4YJ01NGSTa4QVXpl-jkZOOLtZLiKET2awjA3JUq4mgPwjUXt/s320/DSCN5671.JPG" /></a></div>Happy birthday my beautiful little Kylee Mikay!!! I love you so very much!! You made me a Mommy!<br />
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We celebrated Kylee's birthday last weekend with a Scooby-Doo birthday party and Hay Ride!! She said it was the "best birthday ever" lol :)<br />
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Happy 6th Birthday baby girl!!!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-14741199592198364232011-09-27T09:10:00.000-07:002011-09-27T09:10:10.057-07:00oh the joy... feeding charts...So, since Auriana has been having such a hard time eating lately, I have begun keeping a feeding chart again. I charted everything she ate and drank for almost a year before and she had been doing so well that I stopped. Now, thanks to her having surgery and being sick, she is having food aversions yet again and so the charting begins. This time she is not really wanting to eat anything with texture. Only apple sauce and drink. I have started adding meal replacement powder to everything she eats or drinks to keep her calories up! Please pray that her appetite improves... I would hate to have to put her back on a feeding tube.<br />
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Sunday, Grandaddy got her to eat a couple of chicken nuggets and she drank some goat milk.<br />
Yesterday I made her a 70 calorie/ounce smoothie and she drank about 8 oz of it. <br />
Today, no such luck thus far.<br />
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Auriana... EAT BABY....EAT!!!!!!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-60910929706175387082011-09-17T09:42:00.000-07:002011-09-17T09:42:38.950-07:00Happy 3rd birthday Auriana!!Today Auriana is 3 years old! This is almost the exact time of day that I first got to hold her 3 years ago. She was born at 4:37 in the morning, but immediately taken to the NICU... it wasn't until around noon that I was able to hold her for the first time. Since Auriana came into my life, a lot has changed, mostly for the better. She has brought so much joy into my family and so much happiness to her big sister. She has proved so many doctors wrong. I remember being told that she would probably never walk or talk, and yet she is talking and taking a few steps on her own.<br />
Auriana's 3 years on this earth so far have not been without pain. She has gone through more than most of us will in a lifetime and all with a smile on her face most of the time. 11 days ago Auriana had her second major open heart surgery. She amazingly only stayed in the hospital for 4 days this time. She was in the hospital for 12 days with her first open heart surgery. <br />
She amazes me every day with her determination to do what every one else is doing. She has to work so much harder to learn things, but when she is determined she will make sure she gets it in her own time her own way. <br />
Happy 3rd birthday Auriana!!<br />
God has given me such beautiful gifts and He continues to bless me daily!! For that, I am so very thankful!!Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0tag:blogger.com,1999:blog-6527900400855528072.post-4032009313391342532011-08-19T06:38:00.000-07:002011-08-19T06:38:57.187-07:00Auriana has open heart surgery September 2!!Auriana will be having open heart surgery September 2!! Dr. Kirshbaum does have some concern about the weakness in her aortic valve, even though the cath doctor said it looked alright. He will be opening up her aorta so that blood can flow freely as it should. The severe narrowing has weakened her valve some though, so he will be keeping a close eye on that during surgery. Please go ahead and start praying for the team that will be working on her during this surgery and for the nurses who will be helping her recover afterwards.<br />
I have spoken with them about my concerns that she is proned to becoming dependent on a feeding tube and they have agreed that there will not be a feeding tube placed once she is awake and aware, but it is MY responsibility to make sure she eats and drinks what she needs or they will have no choice but to place a feeding tube. I will have about 48 hours after she's awake from surgery to get her to eat and drink!! Pray that this is not a problem!!<br />
Also, pray for Kylee. She has been through so much in the past few years and she is very worried about her sister who she loves so much having another surgery. Pray God will comfort her and give her strength and peace!<br />
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Thank you all for your continued prayers!!<br />
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Here is an example of what aortic stenosis looks like <br />
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com1tag:blogger.com,1999:blog-6527900400855528072.post-86587342273067899092011-08-19T06:30:00.000-07:002011-08-19T06:31:29.858-07:00school started!Kylee started Kindergarten last Monday and she is loving her class! She does very well at school! It gives her stability and somewhere she can be proud of her accomplishments, which she needs. She is still going to the same Christian school that she has gone to for the past few years, which she loves. It is good for her to hear every day that what she believes (The Bible) IS REAL and that all the Bible stories ARE TRUE! She is constantly asking "this story is true, right?" when we finish reading a Bible story. It is very important to her that we keep telling her that Yes the Bible is all true and Yes God is bigger than everything, and Yes God knows everything, and Yes God is always with you!<br />
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Kylee's first day of Kindergarten<br />
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Auriana was able to go to her first day of preschool last Tuesday! She LOVED it! She kept up with all the other kids and did very well while she was there! But, once she got home, she was overly tired and slept for hours and then complained that her chest and head hurt and her oxygen was really low. So I called her cardiologist and he said no more school until she's cleared to return after surgery (probably November or so when she'll get to go back, depending on how she heals. Although with that being flu season I may just keep her out until after the holiday breaks). She is sad she can't go back and says "me too" when I drop Kylee off, but it is what is best for her so she is strong for surgery.<br />
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Here is Auriana on her orientation day<br />
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Auriana's first day of preschool and Kylee's second day of Kindergarten<br />
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Katiehttp://www.blogger.com/profile/08729806284868664966noreply@blogger.com0