Wednesday, July 25, 2012

Some pics

Thought I should add a few pictures.  Yes, that would be nice.
 Mermaid Princess Lucy Loo
 Mermaid Princess Belly Rose
Abby showing off her new stroller!

Okay, a long overdue check in.

So how are you?  I am good.  I am heading to my 20 year reunion this weekend.  I can not believe I am this old.  Any who, let's get to the good stuff!

  • Bella is starting Kindergarden in 2 weeks.  I can't believe it.  She is so ready.  And I am so ready for her to be out of the house!
  • Lucy has hit the full force cajun 3s!  It takes everything I have not to lose it daily.  Love that little cajun girl!
  • Abby is doing so well.  I got 3 weeks with her one on one due to our 'vacation' to my parents house.  And it seemed to push her further along.  She is very close to sitting up, she does baby push ups on her tummy, she rolls where she wants to get, she is holding toys with both hands, and just started putting them in her mouth.  I believe she has said Ma twice.  So great.  She also busted 20 pounds!  I can't wait to see her pediatrician.  He is always so surprised by her weight.  She just broke through her first tooth, I forgot how big they look.  Bella's baby teeth look so small in her mouth and I know when her big girl teeth grow in they will look huge!
I am so excited because I became a member of the National Down Syndrome Congress.  Right now they are having their annual convention.  Steve and I are talking about trying to make it every other year.  I found out that online you can attend their lectures and I signed up.  It is such a particular chromosome disorder and there is so much new information out there, I learned a ton from just one lecture.  The information most people have comes from the 50s or 80s and is greatly outdated.  For instance, it is thought that people with Down Syndrome can't work, drive or live on their own.  But with parents who don't set limitations and provide experiences for their kids, they are able to do most anything.  So that is great.

We will be creating a team for the Buddy Walk in November of this year.  I am hoping it is around her birthday because we can celebrate after.  We are gonna try to get as many people as we can!

I am ready and willing to answer questions about Abby.  I am so lucky to have my background in education as well as having the wonderful experiences with my students.  I feel right now like I can change the world, and I just might.

I just want to send out a special thanks to my friends.  I have chosen my friends carefully in my life.  Very carefully.  And it is for a reason.  I have received so much support from you in the last year.  I am so thankful to many of you.  

A special thanks to:

Amy R. and Brixie M. Thank you for the unconditional love and support during the trying times of my pregnancy.  And thank you for being there for me on that 2nd day when I felt the weight of the world on my shoulders.  It meant so much to me that you visited Abby in the NICU.  Thank you.

Tricia A.  Thank you for being an awesome mom of 4.  We have so many life experiences in common and you have been a pillar of strength for me.  You allow yourself to be human and share it with me.  Thank you.

Staci L. I don't think you can ever know how much it means to me to still have you as a friend after 33 years!  Our lives have paralleled so much and it is so great to have someone to talk to who understands.

Mom and Dad Thank you so much for teaching Jay and I unconditional love and that it is 'normal' to be exactly as God made us.  Thank you for loving my children all the same and for continuing to take care of me.

Jay and Alec Thank you so much for being the guardian angels for Abby.  When she was born you fell in love with her and I know she holds a special place in your hearts.  You love all my children and I thank you for that.

Pat and Teri Thank you for being a really great Aunt and Uncle to my kids.  You were so thoughtful and caring when Abby was born and loved her from the get go.

Bella and Lucy, Thank you for being the best big sisters a little sister can have.  She adores you both and you are great role models for Abby.

Steve, Thank you for being my partner in this family.  We are in this together and I know you love our girls more than you ever knew you could.  Thank you for being one of the most open minded people I know.  When I come up with crazy schemes, you just nod your head and trust me.  I love you.

And to all my friends who daily support me on Facebook, you have no idea how much it means.  

I apologize....

For being such a bad blogger. I have been eating bon bons and tanning lately so it has not crossed my mind... Well that is a fib. I think about blogging all the time. My mind races with things to share, yet getting to the computer for more than 19 seconds is beyond my capabilities at this time. So for that, I do apologize. So tonight I blog. But now, I put a baby to bed.

Wednesday, May 16, 2012

Questions?

I have been asked some questions lately that I have answered falsely.  I am really the kind of person who will do anything for everyone.  If you need something and I have it, it is yours.  Along with this goes the trait that I will not bother anyone else with my problems or needs.  This is a major flaw when you have a child with disabilities because no one parent can do it alone.  So, here is my passive way of sharing my answers to some questions.


  1. Why are you so tired? (my husband)  my answer to him, "I have 3 children, plus you, 4 children to take care of!"  hehe, smile and walk away to do dishes.  The real answer,  "Since I lost Wyatt I was given the gift of reality.  The knowledge that your children can die.  Now, you may say, well you can't live your life in fear!  If you knew my well, you would know I don't, in fact I am quite the 'jump and the net will be there' type of person.  But, there is a little voice in my head that scares the shit out of me.  I get up 2 or 3 times a night to check on my babes.  When Abilene was born, there were 6 weeks of no sleep because she was at risk for heart failure.  I am tired because I worry and as much as I try, it is hard not to."
  2. How are you? "Fine." How am I really?  "I am exhausted and sad.  Abby is showing delays, and I knew she would, but a small piece of me really was hoping she would be the one child with D.S. who would not.  Silly I know, but my reality.  I work really hard and am finally thankful for the education I have from my 'almost' masters in special education.  In fact, my skills far out weigh Abby's teachers.  Most days I am very optimistic about everything involving my kids, but I have to have days where I just feel sad.  
  3. Did you know she would have D.S.?  Yes.  The answer is Yes.  We chose her.  She chose us.  We are happy with her.  I hope she is happy with us.  At this point, when you start to talk about Jesus and how thankful you are I didn't Abort her in front of my children and expect me to agree with all you are saying?  Shut up.  It is rude and improper to discuss Abortion.  With anyone.  Especially in front of my 5 and 3 year old.  You would be surprised to know this happens all the time.  You might be surprised to know I am Pro choice.  But I find it rude to talk Abortion with strangers, or friends really.  They are intimate decisions not meant to share with a lady in Trader Joes.

Saturday, May 5, 2012

I've been drinking wine by myself

For 5 nights!  Why you ask?  OT baby!  If Steve works OT so do freakin I!

So, things are going well.  Surprisingly, I have held down the fort.  We started swim lessons and boy is it awesome for Abby.  It is great for the other 2 as well.  Lucy is in the big girl class, and Bella is in the big big girl class.  I am so excited for the Olympics to start because I want the girls to see women in athletic roles.  We have been talking a lot about healthy eating choices and I feel like the Olympics will give them some positive body image role models to aspire to.  For Abby, swim lessons are supporting the exercising we are working on for her gross motor skills, so another hour a week of one on one work will hopefully help.  For instance, we are working hard on lifting our head on our tummy and reaching and that is what we do the entire time!  So great!  Plus, the YMCA, where we go for lessons, is such an inclusive entity.  It is great to not have to fight any battles to get her to participate.


Monday, April 23, 2012

Real food hoo ha

So, apparently Abby's metabolism will run much slower than Bella and Lucy's.  When Abby was born I spent a pretty penny on books of all sorts about Down Syndrome.  It is how I educate and research.  I was raised in the time before the inter webs and when I had a question my mom told me to look it up in a book.  How old fashioned!  So one of the books was a text book on nutrition for people with Down Syndrome.  Flippin boring.  But I was up at all times of the night with her trying to nurse her so I had plenty of time to read.  Plus, the pumping sessions afterwards weren't as tedious when I had something to occupy my mind.  Long story short, too late, I learned that Abby will have to be very careful about food choices.  Even if she perfectly proportioned her food and ate everything she should, she would not get the proper nutrition.  We will have to carefully dose out vitamins and be very careful about treats.

Well, I want her to be healthy, so I have decided now is the time to change the family food plan.  We don't eat very badly, I make most of our food and we don't eat much fast food.  We have pizza about once a month, In and Out once a month, but Miguel Jr.s once a week.  I don't use a lot of packaged foods and I make most foods from scratch.  But I had a rude awakening when I found the 100 days of Real Food blog.  Wow.  We eat like Shit!  I had no idea of the hidden yuckies in our food.  So, after the research was done I made a few goals and rules.


  • We will buy organic as much as we can.
  • I will make everything I can from scratch.
  • I will buy boxed or packaged food with 5 or fewer ingredients.
  • I will institute Friday as a fast food meal kinda night with a dessert.
  • I will not require others to prepare food for us this strict.
  • If we go out to dinner we can get what we want.
So as I tried my hardest to pump and figure out Abilene's allergies to my breast milk, I came to the realization that I can not keep up my supply when I don't eat enough calories.  Well, when you eliminate as many things as I did, your milk disappears.  So, much to my dislike, I had to change Abby to formula.  Since I had made the above rules for our family, I chose an organic formula for her as well.  Luckily Earth's Best makes a Soy formula.  Problem is the people who use it get to the stores on delivery day and buy it all up!  Rude!  Luckily it is on Amazon subscribe so score!

So, if you try to get ahold of me, I am currently trying out tons of Real food recipes.  If you have any good ones, please let me know!

the funny thing is...


  • while driving a ripped fireman runs by and Bella says, "That man is Hot!"  I said, "what?"  "He is so hot he had to take his shirt off!" Phew.
  • I asked Lucy where she was going, she said "To the potty, ya know, fish heaven."
  • Bella asked me the other day, "Mom, why is there white in your hair?"  Let me tell you why honey.
  • So, I never watch TV, mostly because the shows I watch are not kid appropriate.  So, I save them all for while I clean kitchen, fold laundry, eat mass amounts of snacks after the kids go to bed.  One of my favorite programs is Ghosthunters.  After about 20 minutes in the other night Bella comes in to tell me the TV is too loud, it is keeping her up.  Well, her room is around the corner and you can not hear the TV so I realize she is watching from there.  She asks what the program is about and I say something like, oh these guys are at a frat house and they are just having fun.  She says, "No they aren't.  They are looking for a little girl ghost who fell down the stairs and died.  Her name is Abigail."  Ah Shit.  Well, how do I explain... this is one of these mommy moments... I need to make a positive impact, I got nothing.  Go to bed little girl.

Saturday, April 21, 2012

ABBY HAS DISCOVERED HER HANDS!!! That is all for tonight. I have a ton to say soon... For now, I sleep.

Wednesday, March 28, 2012

Abby just cried when Lucy left the room, you have no idea how great that is? Talked to my mom on the phone, you have no idea how great that was. Lucy and Bella already have pjs on for funzies, that could be really great!

Tuesday, March 27, 2012

Heartbreaker

Abilene is a little heartbreaker, no pun intended. One of the hardest parts about having a child with a disability is the heartbreak you feel so often because of many things. First there is the adjustment of your dreams for that child. I am doing okay with that. Next there is the worry for the future, I don't think that will ever go away. For Abby, there are constant ailments hanging over her head, we just wait for them to pop up, or not, but the list is just long and annoying and constantLy on my brain. Nothing could compare to what I would feel when she was evaluated and I was told what delays she is starting to show. There are a few things she not only meets, but excells at, like communication. She is a talker. Basically, mentally she is not showing too much of a delay, but physically she is delayed, and it broke my ever loving puddin heart. I know she will be, but I don't want to hear it. It brings back so many of my students' parents conversations and I get it now. I get how everything people say whether well intentioned or not, will rip my heart to pieces. I need to grow a thicker skin I guess. Because this is only the beginning.

Apparently I make cream...

We had all 3 girl's well checks last friday. I shall start with the eldest Bella-46lbs 2 oz 84% 44 inches tall 78% practically perfect in every way Lucy- 34lbs 4 oz 81% 39 inches tall 88% practically perfect in every way Abilene- 16 lbs 12 oz 80% 23.75 inches tall 11% (on the typical Kid chart) Practically perfect in every way We discussed the gluten issue and have decided she probably doesn't have celiac since she would be "failing to thrive" which she clearly isn't. So we will stick with dairy free breast milk untill she is six months and reevaluate then. Oh what fun it is to go to the Dr.! The girls have been pretending they are Dr.s all week!

Friday, March 23, 2012

I will never tire of taking pictures of my girls as they sleep.  Never.  I will be a creepy mom with the camera when they are 16.  Yep.


Abilene has been working hard on her exercises, and loves it when Bella helps!

but boy does it exhaust me!


Thursday, March 22, 2012

isn't that funny?


  • Yesterday, Lucy fell asleep while picking her nose.  I got a picture for her yearbook.
  • Bella has asked if she can have a set of adoptive parents as well, so when we are taking care of Abby she won't be alone.  Broke my friggin heart.
  • Hubby is up for promotion.  Yay!  
  • Gluten free bread is yucky.  Very yucky.
  • Abby has a smile that will save the world.
  • Bella and Lucy just grew out of all their clothes and shoes.  In the last month.  How is that possible?
  • If it weren't for Facebook, I am not sure I would have survived the last 4 months.
  • My dad turned 62 today.  I need to convince him he needs to work harder at being healthy so I can help him celebrate 92.

My beauties

Here are the most gorgeous little girls I have ever known.  Well, at least I think they are.  I wanted to introduce my daughters, Isabella, Lucille and Abilene.  Bella just turned 5 and Lucy just turned 3.  Last Thanksgiving, as my husband and I stole a conversation, whilst our sleeping babes snored in the back seat on a long drive home, my husband asked if I thought we might want another child.  I was done, done I tell you, but he said, "There was an empty seat at our table."  I thought about it long and hard.  Here is the story.

You see, we had gotten pregnant in 2005.  We were so excited to find out the gender at 22 weeks.  It was the end of August and as the tech guy was looking at my ultrasound, he called someone else in.  I got a little weirded out, but as the u/s started into the second hour, I started to panic.  Go to your Dr. tomorrow for the results they said.  So we did.  And found out our little punkin would not last.  After giving birth to him we found out his little heart had given out because of Down Syndrome.  We named him Wyatt Jamison, after the cowboy and my brother.  Needless to say, it was a hit to our fun loving life.  I was a teacher for students with moderate to severe disabilities, and to go to work and see what my son could have been was too much.

We got pregnant again, and it was terrifying.  But, in 2007 and 2009 we gave birth to 2 healthy little girls.  Bella has the personality of her father and her paternal grandmothers looks.  Lucy has the personality of her mom and her looks as well, Cajun girl to the bone!  Lord help me when she is a teenager!  So, when asked if I wanted another, I kinda felt like we were done.  I had gotten rid of a ton of baby stuff, but when I thought about holding a newborn, I melted.

Practically though, having another baby meant thinking about a few things.  First, when you have a child with Down Syndrome, it actually increases your chances of another.  I also was 36, gasp, and was reminded again and again that I had A.M.A., advanced maternal age!  What?  Seriously wanted to slap everyone who said that to me, I was in the best shape of my life!  We decided that we wanted to take the risk.  And we did.

It didn't take long and I was vomiting.  For those of you who are lucky enough to skip morning sickness, lucky dog.  I know I am preggo far before the little lines tell me.  And this pregnancy was the worst.  We had our genetic counseling and took the first blood test.  It came back with a chance of the baby having Down Syndrome.  We took more.  By the time we were 18 weeks, we had a 1 in 3 chance of her having Down Syndrome.  We had the opportunity to have an amnio, but I chose not to.  I decided that if she had it, I would give her the best chance I could, and a little poke just to know one way or another wasn't worth the possible early labor.  So, we lasted the whole pregnancy not knowing.

There were a few signs, at least in my mind.  My actor friends call me 'mother earth' because I love to be in tune with my kids and the world.  I have always known what sex my babies were, I knew there was something wrong with Wyatt, and I knew Abby had Down Syndrome.  At one Dr.s appt. the Dr. told me she was small, well my kids are not small.  Lucy weighed 8 lbs 13 oz!  So, I was expecting it when I went into labor.  I elected, (not really) for a c/s, so during the most unnatural experience of my life I heard my husband cry when he looked at our daughter for the first time.  I yelled out, "Does she have Down Syndrome?" and the entire OR went quiet.  Time slowed down.  He came over and looked me in the eye and said, "She does."  I cried for 1 minute.  A rush of emotions flew out of my body, a release of the stress of not knowing, and an acceptance of knowing the truth.  She seemed fairly healthy, had a good cry and looked a lot like popeye.  The mood changed in the OR.  The nurses kept asking if I knew before, they wanted to make sure I wanted my tubes tied, (YES!) and they didn't quite know what to say.

As soon as I got into recovery I asked if I could have my baby.  I explained that I wanted to nurse her right away, and because of the Down Syndrome I would need to get right on it.  They told me no one ever asks for their baby, but sure.  Abby latched on like a champ!  So much so the nurses took pictures of it, because they had never seen a baby with Down Syndrome latch on.  For 24 hours the nurse brought her to me every 3 hours to nurse.  It was great.  They needed to watch her because of her oxygen levels.  On the second night something didn't seem just right.  I called the nurse in because she seemed to be breathing funny, and from there all hell broke loose.  Before I knew it I was running, (after a c/s mind you) after Abby to the NICU.  Scary noises and little babes surrounded us.  After tests came back, she just had a burp, Woops! but she also had high billirubins and very low platelet counts. (Now, I am a terrible speller, so please forgive)  We spent 3 days in the NICU.  On the day we brought her home we also learned that she has 4 heart defects that could cause her to go into heart failure and that I needed to watch her very closely.  Oh my poor baby.

After many appointments, (and a really long story, sheesh!) as of today her heart is healing itself.  She no longer is at risk for heart failure.  She may have to have one or 2 of the problems fixed in her life, but the danger factor is lower.  She was never able to nurse after the NICU, and seems to have some allergies that the Dr and I are trying to figure out.

I promise now that the entries will be lighter and much more fun, just thought I would throw out the beginning.  Thanks for listening.  I think this will help me to release some anxiety by sharing with you.

Tuesday, March 20, 2012

National Down Syndrome Day

Tomorrow is March 21st, National Down Syndrome day. A great day to start a blog about our Abilene. She was born November 9th and has broght more joy than I knew existed in this world. She has 2 older sisters who love her very much. Almost too much. They think she is their doll! I hope to share our families journey with you as well as some humor.