Another year gone... goodbye 2012... a new start

As 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...
In 2012....
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.
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!!

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.

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.

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.....

this seems like a lot, but we can do it with the help of our all powerful Lord!!

Baby 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!!

Kylee 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.
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.
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 ;))
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.
Happy 7th birthday to my beautiful firstborn baby girl!! I can not wait to see what the future holds for you.

Happy Birthday Auriana!

Happy 4th Birthday to my baby girl, Auriana Faith! I am so blessed to say I am Mommy to this special princess!
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 that 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.
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.
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."
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!!
NICU took one look at her and said "Oh my.... mom was right. I think she just has Downs"
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.
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!
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!!
I thank God for all three of my precious little girls!
Happy Birthday Auriana! I love you and am so thankful for you just the way you are!

School

So, 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.

Inside the mind of my kids...

What are you thinking?

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)

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!

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!

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 this article 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 here using a specifically formulated drug called RG1662.

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.

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.

There is only one person who can see what we are thinking!
Psalm 139:4
"Even before a word is on my tongue,
behold, O LORD, you know it altogether."

Summer 2012 already

So.... 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) 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. 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 ;)