The Stone Family

DAY 30! I made it!

2011-12-30T22:17:00.000-08:00

Day 30: A self portrait, and what have I learned the past month!

Haha, not new, but I love this girl. This is Aleah and I waiting to go on the Toy Story ride at California adventures.

I have learned, it's hard to blog everyday, but I am always glad I did it, i love reading other peoples blogs, I update my blog more as I am inspired by new blogs I follow. Not a whole lot, but this was a fun challenge!

Day 29.

2011-12-29T22:47:00.000-08:00

Day 29- Something new
Christmas just passed, so this one is easy!!

I also got a coach purse, coin purse, wallet, and uggs. :) And some makeup and other little fun things!

Day 28

2011-12-28T22:37:00.000-08:00

Day 28- A picture of you last year and now, how have you changed since then?

My hair is longer, and darker, and I am more confident in myself, marriage and life, that I know for sure.

Day 27!

2011-12-27T16:57:00.000-08:00

Day 27- Why are you doing this 30 day challenge

I love to blog, sometimes I forget, sometimes I can't think of anything to talk about, and sometimes I feel like no one reads it so it's pointless. I want to write more frequently, I want to try and do it daily and have 30 days worth of topics made it super easy for me to make the time!!

Challenge Day 26!

2011-12-26T16:55:00.000-08:00

Day 26- A picture of something that you have made

I make Hair bows, Tutu's, Wreaths, Diaper Cakes, Cakes, Cupcakes, Cake Pops, Headbands, Ribbon Lei's, Body scrubs etc... :)

Day 25!

2011-12-25T00:00:00.000-08:00

Day 25- What I would find in your bag

1. Wallet
2. Keys
3. Iphone
4. Chapstick (Peppermint flavored probably!)
5. Gum
6. Boogie wipes!
7. Wipeys
8. Probably a diaper because I babysit Nicholas.
9. Snacks for Maddie
10. Receipts
11. Wrappers
12. Coin purse/loose change
13. Nintendo DS/Ipod or something else to entertain Maddie
15. Lip gloss (Benefits)

Challenge Day 24!

2011-12-24T20:59:00.000-08:00

Day 24- A letter to your parents

Perfect timing on this one, being thankful for them on Christmas eve!

Dear Mom,

Thank you. You, for my entire life have been everything to me. Not only for me, but for Carrie and Leslie too. You are the most selfless person that I know, you would drop everything to help anyone that you love, and you are always willing to give us the shirt off of your back. My girls are so lucky to have you as their Gram. They couldn't ask for anyone better, and they love you so much. We all love you, and I love that our relationship has evolved into what it is. I always know that you are 1000% behind me supporting everything that we do, no matter what it may be. From going back to school with my hectic life, or fighting with a doctor over Maddie's medical health, or even going to battle with the school district over her i.e.p. I am so greatful for you, I don't know that I could have handled everything that I went through with Maddie without your support. I know that you say that I am strong and you couldn't have handled being in my situation, but I know your situation was just as hard as mine, you were not only heartbroken for Maddie, you were heartbroken for me, and at the same time you were my rock. You are an amazing inspiration for me, and I hope that I am half as good of a mother as you have been to me.

Butch,

Thank you, too! You are also one of the most selfless people I know. You may not have been my biological father, but you are my dad 1000%. I may not have always acted like I loved you, but I want you to know that I do. I appreciate everything that you do for us, you are such an amazing Dad and Papa and we are so thankful for you.

Challenge day 23

2011-12-23T09:32:00.000-08:00

Day 23- Something you crave for a lot or something sweet

I love peppermint, it's my addiction. Artie makes fun of me all the time because of it. Christmas time is my favorite because everything is peppermint scented and flavored! :)

Blogger challenge, day 22

2011-12-22T09:31:00.000-08:00

Day 22- What makes you different from everyone else

Being a CHD Mom def makes me different than a lot of people. My life in the last five and a half years has been nothing short of a roller coaster, and Maddie is nothing short of a miracle. You never believe you will be "the one" who has a "sick" child, but it's possible. Life is beautiful, even with the challenges we have and will continue to face with Maddie, and my perspective on life and parenting is forever changed because of this wild and crazy girl.

Day 21

2011-12-21T00:01:00.000-08:00

Day 21- A picture of something that makes you happy
I know, I know, this seems to be a trend on my blog. I can't help it, I love being their Mommy.

Day 20!

2011-12-20T00:25:00.000-08:00

Someone you see yourself married to/being with in the future:

Easy Peasy. I. Love. This. Man. Always have, always will.

We have been "dating" since August 24, 2000. Got Engaged October 31, 2003 and have been married since Sept 30, 2006.

Day 19!

2011-12-19T13:25:00.000-08:00

Day 19- Nicknames you have; why do you have them

Well my favorite nickname is mom, :)
Artie calls me Boo-Boo which drives me crazy and he calls me that to annoy me.
My aunt Carrie calls me Shell, always has.
My aunt Leslie calls me Sparky, can't remember why, but she does.
Tieara calls me M.Lo, I think it comes from when I used to do my hair all crazy all the time, not my favorite phase. Lol.
My friend Lizzie from school called me Meechee, lol.
My grandma calls me Annie, not sure where that come from either, lol.
And my Mom calls me Mick. :)
Oh, and Nicholas calls me "Shull" he hasn't quite figured out Shell, or he calls me auntie when he wants something!

Day 18

2011-12-18T11:49:00.000-08:00

Day 18- Plans/dreams/goals you have

My biggest goal is to finish college, I feel sometimes like it's a pipe dream, but I know in reality I can do it, it's just going to be a lot of work, and in the end I will be so glad that I did it.

Day 17

2011-12-17T11:47:00.000-08:00

Day 17- Someone you would want to switch lives with for one day and why

Hmm, this is hard, I am at a place where I am actually really content with my life, I have an amazing husband, children, family and friends. I suppose if it had to be someone it would be someone famous, it would be nice to know what that life is like, if only for a moment. :)

Blogger Challenge, day 16:

2011-12-16T20:14:00.000-08:00

Day 16- A picture of something out in nature
This was taken a coupl years ago when we were in Oregon, it's one of my favorite pictures of Zowie.

Blogger Challenge, Day 15:

2011-12-15T22:08:00.000-08:00

Day 15- Put your iPod on shuffle: First 10 songs that play

1. Kid Rock-Roving Gangster
2. 112- Right Here For You
3. Creed- Torn
4. R.Kelly-Sadie
5. Rob Thomas-Her Diamonds
6. Lifehouse-Somewhere In Between
7. Taylor Swift-Forever and Always
8. Dave Matthews Ban-What You Are
9. Green Day-Wake Me Up When September Ends
10. Chris Brown-Kiss Kiss

Blogger Challenge, day 14

2011-12-14T22:01:00.000-08:00

Day 14- A picture of you and your family

At the garlic festival,such fun memories!

Blogger Challenge, day 13

2011-12-13T22:00:00.000-08:00

Day 13- A letter to someone who has hurt you recently

I will come back to this one soon...

Blogger Challenge, Day 12:

2011-12-12T21:57:00.000-08:00

Day 12- How you found out about Blogger and why you made one

I don't remember how I found blogger, but I began this blog to have a place to vent frustration, tell stories, write things down to remember them and to keep friends/family updated on Maddie's health. :)

Blogger Challenge, Day 11:

2011-12-11T18:05:00.000-08:00

Day 11- A picture you took in class, at work or out and about

I love this picture, we take a similar one every year at the heartwalk, always the same kids. :)

Blogger Challenge, Day 10

2011-12-10T02:18:00.000-08:00

Day 10- Songs you listen to when you are Happy, Sad, Bored, Hyped, Mad:

Happy music, hmm...that's hard because I don't really care what i'm listening to when i'm happy.

Sad, I listen to sad songs, I'm a glutton for punishment, what can I say? A few favorites for the sad list:
The Band Perry: If I Die Young
Tim McGraw: Live Like You Were Dying

Bored: Anything on the radio will do, that being said, I rarely have time to be bored!

Hyped: Fast music, usually rap, lol, that's not usually my thing but I can def. get down to some old school rap when i'm in the mood for it!

Mad: ROCK. I love nothing more than blasting some angry rock music when I am mad at the world. :)

Blogger Challenge, Day 7

2011-12-10T02:07:00.000-08:00

Day 07- A picture of someone/something that has the biggest impact on you

This one is super easy.

I never knew how much you could love someone, until I gave birth to Zowie. Then I never believed you could ever love another someone as much as the first, and Maddie came along and showed me tha wasn't true at all. I love these two little ladies with every ounce of my being. I live and breathe these two, and everything I do, I do for them.

Blogger Challenge, Day 9

2011-12-09T08:13:00.000-08:00

Day 09- A book you are reading

I love to read, and right now I am in the middle of finals for school so any free time I have isn't for reading, unfortunately. However, before life got too insanely crazy I started reading Bossypants by Tina Fey, and I also started re-reading The Hunger Games series because the movie comes out in 2012!
Yes, i'm a nerd, so what?

Blog Challenge, Day 8

2011-12-08T00:10:00.000-08:00

Day 08- Short term goals for this month and why

NO STRESSING OVER THINGS YOU CANT CONTROL! Enjoy every moment because it seems like the older my girls get the faster the years fly by. I have only a few short years before Zowie is a "tween" and I don't want to regret any time that I spent with either one of my girls, I want to enjoy every small moment and know that I was the best mom that I could possibly be.

Blogger Challenge, Day 6:

2011-12-06T02:00:00.000-08:00

Day 06- Your favorite shoes, wardrobe

I looove loooove loooove Ugg boots, Old Navy flip flops, Old Navy Jeans and any brand Cardigans! I also love coach purses, they are kind of a newer obsession for me, but I am slowly (veeerrryyyy slowly) building my collection! :)

Blogger Challenge, day 5:

2011-12-05T20:03:00.000-08:00

Day 05- A picture of somewhere you’ve been to
Disneyland :) Once a year, at least, with our girls. This was last christmas. :)

Blogger Challenge, Day 4:

2011-12-04T19:58:00.000-08:00

Day 04- Something you collect.

I collect anything with hearts, lol, especially clothes for Maddie, it is an obsession at this point! I also collect kitchen fairies, and my mom calls me a gadget girl because I collect kitchen gadgets (waffle maker, mixer, pans, cake decorating items, etc.)

My Little Kitchen Fairies Pineapple Princess Hula Fairy Figurine (clipped to polyvore.com)

Blogger Challenge, Day 3:

2011-12-03T19:52:00.000-08:00

Day 03- A picture of you and your friends, What you think about your friends.

This is Felishia, our Moms were best friends, and my mom is her Godmother. :) We have known eachother forever. Not only is she my best friend, she is currently expecting my first Goddaughter, Isolena, and I can't wait to meet her. She is an amazing person, and has been there for me through thick and thin, I would do anything for this girl, or her little family. <3

30 Day Blogger Challenge, Day 2:

2011-12-02T19:50:00.000-08:00

Day 02- The meaning behind your Blog name

Well The Stone Family is pretty self explanitory, but my blog address amzmstone stands for Arthur, Michelle, Zowie and Madison Stone, get it, AMZM Stone. :)

30 Day Blogger Challenge, Day 1

2011-12-01T19:28:00.000-08:00

Day 01- A recent picture of you and 15 interesting facts about yourself

No recent pictures on my computer...which leads me to fact #1:

1. I hate having my picture taken!

2. I love being a mom, and wish we were having more babies.

3. I am insanely in love with my husband, and feel like I love (and like) him more and more as time passes.

4. I have very few friends, and actually love it that way.

5. My favorite thing to do on a friday night is rent a movie and have family night with my girls and husband.

6. I love Pepsi, and I hope someday Artie retires from there.

7. I love cooking, baking and throwing parties.

8. My kids are spoiled rotten, and I love that we are able to do that!

9. We try to take the girls to Disneyland at least once per year, one year, we went twice.

10. March 2nd is my favorite holiday. :) <3

11. I want to teach special education.

12. I am taking classes full time online and am usually doing homework at 2:00 in the morning.

13. I am obsessed with anything that has hearts on it.

14. I love suprising the people I love with gifts!

15. I am actually not at all freaked out about turning 30!

30 day blog challenge!

2011-11-29T23:33:00.000-08:00

The 30 day blog challenge, getting to know me, if you're following me, I hope you do this too! :) <3 Starting tomorrow!!

Day 01- A recent picture of you and 15 interesting facts about yourself

Day 02- The meaning behind your Blog name

Day 03- A picture of you and your friends, What you think about your friends.

Day 04- Something you collect.

Day 05- A picture of somewhere you’ve been to

Day 06- Your favorite shoes, wardrobe

Day 07- A picture of someone/something that has the biggest impact on you

Day 08- Short term goals for this month and why

Day 09- A book you are reading

Day 10- Songs you listen to when you are Happy, Sad, Bored, Hyped, Mad

Day 11- A picture you took in class, at work or out and about

Day 12- How you found out about Blogger and why you made one

Day 13- A letter to someone who has hurt you recently

Day 14- A picture of you and your family

Day 15- Put your iPod on shuffle: First 10 songs that play

Day 16- A picture of something out in nature

Day 17- Someone you would want to switch lives with for one day and why

Day 18- Plans/dreams/goals you have

Day 19- Nicknames you have; why do you have them

Day 20- Someone you see yourself marrying/being with in the future

Day 21- A picture of something that makes you happy

Day 22- What makes you different from everyone else

Day 23- Something you crave for a lot or something sweet

Day 24- A letter to your parents

Day 25- What I would find in your bag

Day 26- A picture of something that you have made

Day 27- Why are you doing this 30 day challenge

Day 28- A picture of you last year and now, how have you changed since then?

Day 29- Something new

Day 30- Self Portrait 30 days later, In this past month, what have you learned

Raising a "Special Needs" child.

2011-11-02T21:53:00.001-07:00

This topic has been weighing heavily on my mind lately. I hear so many negative opinions, rude phrases, horrendous thoughts, and "i'm sorry's" from people all the time, and to be completely honest, it pisses me off. I have never been religious, at all, but I believe that children with special needs are given to people for a reason. I know that Artie and I aren't perfect, by any means, but BOTH of our daughters mean the world to us. It was never a question of if we were prepared for our journey with Maddie, or if we wanted to take this journey with her. From the moment Maddie was diagnosed with 22q, we have done everything in our power to help empower her to be the most successful person that she can be. Her life will be full and amazing, and she will acheive great things, and we couldn't be more proud to call her our daughter. She may have some difficulty learning certain topics, or remembering things, but she is brilliant and she has the kindest hearts I have ever known. She never has an ill word to speak of anyone, no matter how mean or judgemental that person may be. She is friends with everyone, loves everyone and wants to be loved by everyone. There will be struggles in her life, we know that, I would never be so naive as to pretend that things have been or will be easy for her, I know this isn't the case, but I also know that if there's a will, there's a way and my daughter can do anything that she puts her mind to. I am proud of the accomplishments that she has made, I am looking forward to continuing to see her progress and grow, and we will always be behind her pushing her to acheive greatness. Don't pity me for being a special needs mom, don't look at us and assume that we aren't happy, or that we would change our situation, and don't apologize to me for the life that we live. To be completely honest, I pity the ignorance of people who can't see the beauty of a child with special needs, I hate people who use the word "retard" or ever refer to someone as a "retard" simply because they are different.
I will never act as though the road we travel is a picnic, it isn't, we have gone to speech therapy 2 hours a week for the last 2.5 years, and there isn't an end in sight. I have been to countless i.e.p. meetings, researched laws on special education and my rights as her parent for hours upon hours. I have fought with the school system already and she is only in kindergarten. I constantly worry about her well being, hoping I have done the right thing for her, and that she is in the best possible educational environment, and no one, can be 1000% sure that she is. At the end of the day, when she comes running to me with arms wide open, excited to tell me about her day, I know in my heart that she is in the right place. I watch her do her homework, I see her educational advances, I watch her so carefully write her own name on her papers, and I realize that these things are all huge milestones for her, and we celebrate each of these little victories. There is a list of things that we were told she probably wouldn't be able to do, she coudln't do, she shouldn't do, and we shouldn't expect from her, and while all of that information is well researched, and helpful to some, please know that our little miracle girl is crossing things off of that list left and right. Maybe her speech with never be perfect, maybe her left handed chicken scratch handwriting will always be a little hard to read, maybe she will have to study harder, practice longer and push more to remember things, but that is her, and she is loved. I can't imagine my life without that little monster, and people who don't have her in their own lives don't realize how much they are missing out on. I love my special needs child, and my "typical" child dearly, and I always will, no matter what happens.

Seven? What???

2011-07-04T22:33:00.000-07:00

(Zowie at 2 years, Maddie at 2 weeks)
I can hardly believe that it has been 7 years since I became a Mom. At times it feels like it was just yesterday, but then I have a hard time remembering my life before Zowie. She was a stubborn baby, who decided to forego her June 28th due date and hold off for the 4th of July. My grandparents had just bought a gorgeous new home and planned a huge housewarming/4th of July party, which we missed, obviously. :) She has believed for her entire life that people set off fireworks just for her birthday, the American flag is her "birthday flag" and the entire United States celebrates her birthday. (It must be nice to be Zowie!) :)
I can't remember life without this girl, she is still amazingly stubborn, but is also one of the sweetest most loving children I have ever seen. She will be the first to run and help you up if you fall down, and also the first to run and get you a band aid. Zowie is an amazing girl, and we have had an awesome time the last 7 years watching her grow up. It seems like just yesterday she was this bright red (Ever heard of too much oxygen in your blood? Oh, the irony!) bald little baby, and now she is a hip hop dancing, gymnastics loving tall and beautiful blonde 7 year old! Time just keeps on flying by, I just wish we knew how to slow it down!

Mother's Day!

2011-05-09T20:59:00.000-07:00

(This picture was taken a couple weeks ago at the Jelly Belly Factory, but it's too cute not to share)

This Mother's Day wasn't exactly the most peaceful day of the year, but it was fun, and I got to spend it with all of the amazing women in my family. We started off with our traditional "Mom's Only" breakfast with my mom, my aunts and my grandma and great grandma (We have 5 generations of women alive in my family right now, amazing right?). Then my aunt and I did a little shopping before we met up with my other grandmother, and 2 of my cousins for a movie, Something Borrowed is a super cute movie, and the book is amazing too...if you haven't read it, you should! :)

I feel like lately my "mom skills" have been put to the test. It seems like all of these things that should be easy have been difficult, and I have been reduced to tears several times over these little injustices we have faced. I have had to push and push people just to get them to do their jobs, and it seems like no one I have dealt with cares about doing what is right.

I think I mentioned before that the girls are playing softball together this year, they are playing in the very small town that my husband and I grew up in. The town has 2 leagues, and we signed the girls up for the smaller of the two leagues thinking they would be a little more understanding about Maddie and her abilities. The small town has very few businesses that are successful, and 1 of them happened to belong to a coach/mom/sponsor from another team in the league. (She was never the nicest person on earth, by the way) So 3 weeks ago (I think?) the "officials" call a meeting and tell us that even though the girls are 4-5-6 the are taking the Tee away from the T-ball teams and expect them to learn to hit off of pitching (the pitcher being another 4-5-6 year old). I voiced my concerns repeatedly, and was ignored, so I finally bring up Maddie's situation, and the business owner/mom/coach/sponsor turns to me and says "If your daughter can't figure it out, then she shouldn't play."
I was appauled, angry, furious, hurt, confused, disheartened, disappointed, and PISSED. (Sidenote, I have signed Maddie up for a few activities, soccer, swimming, ballet, tap dancing, etc and she has hated all of them, until Softball)
I left the meeting furious and made a call to the national headquarters for the league which turned into people telling me that they "totally agreed with me" that Maddie should use a Tee, but after some of the things that were said and done we took our cute little team and we moved to the bigger, and suprisingly nicer league. The thought of letting that heartless woman take softball away from Maddie killed me. She absolutely loves going to the games, wearing her little cleats and uniform and swinging her (still too large) tiny bat. I hate that woman for her ignorance, and her unwillingness to see Maddie's incredible potential, I hate myself more for not saying anything to her when she had the audacity to speak that way about my child. I know in hindsight it was best for me to walk away, but every ounce of my being wanted to unleash my rage on her and tell her exactly what I thought of her and her ignorant descriminatory ways.

I will never understand someone who can look at a differently abeled child and think anything negative about them. I love both of my children with all of my heart, and no matter how different they are from eachother they are both 100000% perfect in my eyes, and anyone who can look at Maddie (or Zowie for the matter) and think anything different better watch out, because this momma bear has some seriously sharp claws, and I am not afraid to use them.

22q and you! Name change?

2011-04-27T23:31:00.001-07:00

I just read some informative websites about a proposed "name change" for DiGeorge/VCFS. I know since the moment Madison was born we have heard her genetic disorder called many names, it can be confusing, and overwhelming when you first begin the journey having to remember all of the different names that doctors/geneticists/specialists are talking about. I feel like the campaign is amazing and makes so much sense. From here on out, and this goes for you too family and friends, we will be referring to Madison's genetic disorder as 22q11.2 Deletion Syndrome. I know that's a tongue twister, but so is Tetralogy of Fallot and you all memorized that!! :)
If you would like more information on the 22q campain for the same name please visit:
http://www.22q.org/news.php

Scary week!

2011-04-15T22:54:00.000-07:00

(In the Emergency Room)
Last weekend Maddie started coughing, alot. It was a painful sounding cough that wouldn't let up no matter what we did for her. I knew she could take Benadryl (thinking it was allergy related) so I gave her Benadryl and it did nothing. I made an appointment with our pediatrician on Monday morning and he agreed that it was probably just allergies and recommended we try to give her Loratidine (Children's Claritin). I went to the pharmacy, found what we needed and we came home to test out the new medication. Within about 1-2 hours of her first dose, she was fast asleep on the couch. I woke her up to go pick Zowie up and when we got back from the school she laid back down and fell instantly back to sleep. About an hour later she started running a fever, and refused to get up to eat a snack, and then her breathing became very rapid, and her heart rate increased significantly. I called the hospital and after waiting 10 mins to talk to an advice nurse I just decided to take her to the Emergency Room. She slept the entire 20 minute drive there and then begged me to carry her ino the hospital. When the nurse checked her vitals she had sever tachycardia and tachypnea (rapid heart rate and rapid breathing), the nurses expedited us to the doctor and upon examining her they decided they believed she was having an allergic reaction to the Loratidine. They kept us there for about 2.5 hours to watch her, and then took chest and lung xrays to rule out any other illnesses that could be causing the symptoms. Everything came back clear and she started asking for food and juice and acting more normal so we were sent home with the advice to never give her loratadine ever again. Monday night was rough, she didn't sleep at all, but during the morning tuesday she was running around like a crazy person. We sent her to school tuesday and when she got home she was so sleepy that she didn't even want to eat (again). We went back to the pediatrician on Weds. and he said if she was allergic to Loratidine they wouldn't be able to give her any other allergy medication and we would just have to deal with the horrible cough with benadryl, steam and humidifiers. Wedsnesday night was seriously the worst night she has ever had. Maddie coughed for hours wth no break and we were both in tears at 345 when neither one of us had slept at all. I was hysterical thinking that this poor baby was going to spend the next few weeks/months suffering through these allergies with no relief. Finally around 430 we both fell asleep, and she got a little break from the cough. Thursday morning we got a phone call from the Emergency room doctor, it turns out he didn't "look closely enough" at Maddie's xrays and somehow missed the spot on her lungs, SHE HAS PNEUMONIA! This poor girl has been suffering for a week with pneumonia and everyone was dismissing my concerns by saying it was simply "seasonal allergies". She decided to spike a fever Wednesday afternoon which I had already called the pediatrician about, so the pneumonia diagnosis made more sense given the 101-102 fever and horrid cough. Needless to say we are thankful that they "re evaluated" the xray and realized they had made a mistake, I shutter to think what it would have been like if the pneumonia had worsened. (Forgot to mention her Oxygen Sats were only hovering in the mid 80's to lower 90's in the emergency room...her "normal" since her surgery is 100%, even when she is sick. I have NEVER seen her Oxygen that low, not even before surgery.)
We are now on day 2 with the antibiotics and she is sleeping peacefully, and the horrid cough is now a few little hacks here and there.

(Just found out we were going home!)

Softball Season!!

2011-04-06T12:30:00.000-07:00

I played softball constantly growing up, I started at 5 and played up until college. I looooved it. I played on traveling teams that never took time off and we practiced constantly. :) Needless to say I have always hoped that my girls would want to play softball, and then when Maddie was born we weren't sure if she would ever even be able to consider playing because of her heart. Well, true to Maddie form she is allowed to play, and she actually loves it! I had high hopes for her after our first few practices when she seemed to be having fun, albeit bored sometimes (and crying when the girls didn't hit the ball to her). :)
She has carried her love for the game onto the field, and after our 2nd game last night she really seems to be enjoying herself! Zowie likes softball (prefers cheerleading) but shows a real natural talent for softball. She has had 4 at bats and been able to hit "coach pitching" each time, and not had to use the T at all! (We are playing TBall but the coach pitches 3 balls to each girl, and if they are unsuccessful hitting off the coach they move to the T.) Now if we could only find a way to lengthen the girls' attention spans we would be in Business!! :)

The league that we play in has a parade on opening day, a full on make a float and drive 2 miles with the kids throwing candy and singing in the back parade. We are "The Sweethearts" and our girls are sooo adorable!! My best friend is the Manager/coach, her husband is a coach and I am a coach so it's nice to be able to see them so much, not to mention the fact that my girls love Caylee (their daughter) to pieces.

I.E.P.'s, meetings, stress and suprises.

2011-03-18T21:44:00.000-07:00

The last 2 weeks of my life have been incredibly stressful for me, like falling asleep at 4 and waking up at 6 and not being able to close my eyes stressful. I had a meeting 2 weeks ago with Maddie's school and the psychologist (hugely important member of the iep team) told me that she thought Maddie was ready to mainstream and go to school with her sister for Kindergarten.
As soon as the words came out of her mouth I felt sick.
This wasn't an IEP meeting, it was an evaluation meeting for me to update Maddie's progress from my perspective, this is normal, and a good way for me to reflect on what I think is happening in her life. Anyway, I mentioned thinking that I didn't feel like that would be the best plan for her, and I was met with a "we will see".
I felt sick all week, and helpless, which is not a fun place to be.
I researched and read and researched and read until I thought my eyes would bleed. And then I found the warmline, a resource for parents of special needs children, I found out they were having an IEP training class Wednesday night, perfect timing for my Thursday morning IEP. I went into the meeting a little nervous about the outcome of our IEP and came out feeling empowered and knew so much more about my rights as a parent. I learned so much in that 2.5 hours that my head was spinning, I spent the entire night after the meeting reading the 250 pages of information I received. The morning of the IEP I was so nervous I thought I would puke, lol. Turns out the teacher Maddie has right now did an amazing job of evaluating Maddie's abilities, the psychologist realized that Maddie still needs support and wouldn't do well in a classroom of 30 kids. So in the end, all of the worrying stress and phone calls weren't necessary, I was able to get exactly what I wanted for Maddie, no fighting, no issues, just a peaceful meeting that turned out to be 100% positive. :) Our plan for next year is in place, Maddie will attend summer school for 4 weeks, and then head off to Kindergarten, I can hardly believe it...
I know in my heart things will never be "easy" with Maddie, but it is extremely helpful when the people who work so closely with her know what they are doing and pay so much attention to her and her little quirks. :)
Thanks for the positive thoughts and well wishes these past 2 weeks, they were greatly appreciated!!

Glasses!

2011-03-03T22:40:00.001-08:00

Wasn't Zowie this big yesterday? Seriously this little lady is growing up wayyyy to fast for me. :( I am so proud of how amazing she is, but my goodness, slow it down girlfriend, Mommy is not ready for you to be sooo big.
I read somewhere that you should get your child's eyes checked by an actual optometrist after they start school. Apparently most of your nerves and muscles in your eyes are developed completely by the age of 8 and catching any issues before then is very important. That being said, I have wondered for a little while if Z didn't have some kind of vision issues. She is the clumsiest kid I have ever known. Pretty much everyday she comes home with dirty knees because she has fallen on the playground during the day. She also has issues with reading, which is weird because she is very bright. She tends to mix up letters in words, and she also guesses at words, once she sees the first two letters she will just guess at the rest. (Even if it is a word she can, spell and read with no help.) So I took her into the appointment with suspicions but figured I was just being paranoid and we would be sent home with a clean bill of health. WRONG. Z is farsighted! I was right, she has to get glasses and wear them when she is reading or doing any work close up! Maybe this will help solve our reading issues, and kind of explains why the kid will trip over the curb when it is right in front of her face! Going into the appointment she was adamant that she was NOT going to get glasses and didn't want to wear them. By the time we left she was heartbroken that they wouldn't be ready for her to wear to school tomorrow. She is hilarious. Oh, and I forgot to mention that the optometrist had to dilate her eyes and Zowie didn't even flinch! The Dr. told her that she was the bravest kid she had ever met, because she has teenagers that wine when the eye drops go in. :) She was SO proud of herself when she heard that!

(her eyes look really creepy in this picture, they were still dilated and the light in the restaraunt caught them the wrong way)
After we tried on every single pair of frames we could find, we headed over to the mall and found her some new pajamas for her pj day at school tomorrow, and then found an outfit for Maddie's spring pictures at school. We finished up our alone time with lunch at Red Lobster where she continuously harassed me about how gross I was for eating crab. :) She enjoyed some chicken strips, french fries and a chocolate banana smoothie, and then we headed home to wait for Maddie to get back from school. All in all it was an awesome day, I loved getting to spend 1 on 1 time with my too mature for her own good incredibly witty almost 7 year old. :) I love her so much, and I can't believe how quickly she is growing up. Life passes us by too quickly...it's not fair.

Baby I'm amazed by you...

2011-03-03T22:18:00.000-08:00

Yesterday Artie and I went to Sams club and picked up Maddie's special Dora cupcakes for her class, bought them a huge bag of M&M's and headed to her classroom to visit. My Mom actually took a long lunch and joined us which was a suprise for Maddie. We got to the school while the kids were "getting their sillies out" on the swing in the classroom. The teacher piled them up on the swing and let us take some pictures and then they played a little game before we headed to music time.

Maddie's school never ceases to amaze me, I love love love her teachers, and all of the staff at her school. When we walked into the office to sign in, the receptionist talked to us for a few minutes about how much she loved Maddie, and how adorable she is. Then the principal stopped us and told us how funny Maddie is, and how it seems like she "gets the jokes, even when other kids don't." He told us that she always laughs at his jokes, and that she is a crack up. Most principals don't know the name of the kids in their schools, and they really don't recognize parents instantly, and then stop to tell them cute stories about their kids!
Back to music time, all of the kids, teachers, and staff at Maddie's school gather on a huge carpet in the main room (even the principal), and sing songs, do some cute little activities and spend 20 minutes or so together, every single day!!
When it came time to sing Maddie was so into all of the songs, she kept looking at us and smiling and saying hello, but you could tell how much she enjoys that time. The main teacher who runs music time called on Maddie and had her come up to the front and help during calendar time. She got to use a pointer to point out the numbers on the calendar, and I cried. :)
We watched all of music time, and then went back into the classroom with Maddie and watched her little class get their day started, again she got chosen to help the teacher, and I got teary eyed.
It was an amazing and humbling experience to spend that time with Maddie at school. 4 years ago I had no idea what her life would be like, so seeing her play with her "best friend Patty and best friend Kahea" was amazing. It was also amazing to see how far she has come. When she started preschool we actually wondered if she was color blind because she didn't know any colors, now she knows a ton! She also didn't recognize any animals, letters or shapes. It is amazing to me how far she has come in just 1 year. It gives me so much hope for the future and I feel like we have so many amazing things to look forward to. I will forever love Maddie's preschool, I will be heartroken when her time with them ends and I truly can't imagine how difficult it will be to say goodbye to all of them.

4 years ago, today.

2011-03-02T00:00:00.000-08:00

4 years ago I handed my (almost) 8 month old, crazy haired baby over to the capable hands of the surgical team at UCSF Children's hospital.
4 years ago I cried and worried.
4 years ago my family and friends made the drive to UCSF to sit and cry and worry with me.
4 years ago my mind couldn't even comprehend what it would be like to be 4 years post op.
4 years ago Dr. Tom Karl, Pediatric Cardio-Thoracic Surgeon, saved my baby's life.
4 years ago I saw a bed roll past a waiting room, a head full of wild black hair adorned the sheet on the bed, and a very sweet doctor gave me a thumbs up sign.
4 years ago I burst into tears of joy.
4 years ago I saw my daughter with 3 chest tubes, an incision, pacemaker wires, oxygen tubes, iv's and a ventilator.
4 years ago I cried tears of terror.
4 years ago I watched a nurse take my baby off of the ventilator, and then I watched her take her first breath.
4 years ago I cried (more) tears of joy.
4 years ago I watched an Oxygen sensor hit 100% when placed on Maddie's finger.
4 years ago I cried tears of relief.
4 years ago my daughter was able to have her drainage tubes removed, her pacer wires cut, and I was able to hold her 96 hours after her open heart surgery.
4 years ago I cried tears of joy.
4 years ago I cradled my baby in my arms and then placed her in the car seat for a 2 hour drive home, back to our life, our new normal and the beginning of her journey with a "perfect" heart.
4 years ago I cried tears of relief.
4 years ago I learned that I was stronger than I ever imagined, but that my strength was infinitely surpassed by that of my child.

Today I know that I am blessed beyond belief to be the mother of my children. My baby is now 4 years and (almost) 8 months old. I watch her play with her friends, and I see nothing but joy on her face. I listen to her speak and know that she has no memory of the terror that we felt 4 years ago, and I smile because her innocence is so beautiful. I look at her face and see a perfect, beautiful and crazy 4 year old little girl that loves her life, her family, her friends and everything that she does. She rides a tricycle, plays softball, counts to 14, sings her ABC's, knows her colors and works her little booty off to learn everything she needs to know to start Kindergarten in a few months! The road to today hasn't been easy, there have been many bumps and bruises along the way. We learned together exactly what that CHD diagnosis means, and we continue to learn exactly how it will affect us in every aspect of our lives.

Maddie Grace, you are an amazing little girl. Your smile is contagious and your laugh is infectious. You light up my life, and I thank God every single day for giving you to me.

A lifetime diagnosis.

2011-01-19T23:16:00.000-08:00

I was looking around at Shaun White's website the other day (if you don't know, Shaun White is an olympic snowboarder/x games competitor that just so happened to be born with Tetralogy of Fallot), while reading comments from his fans about his life story I was shocked. These people were talking about his heart disease as if it were nothing. One person commented "So what? He had surgery as a kid, this doesn't affect him now, who cares." Really? Who cares? Are people really so unaware of congenital heart disease that they don't realize this is a LIFETIME diagnosis? This NEVER goes away. Even the CHD survivors who are lucky enough to "only" have 1 surgery, it will still never stop affecting them. Even if you don't require another surgery, you will still spend your life in and out of cardiologist offices, taking medications and wondering if the way you are feeling is "normal" or a result of your heart. I worry every single day about Maddie and her heart. When she is tired and wants to take a nap, I can't just convince myself that she's just tired from school, my mind instantly starts to wonder if her heart isn't the cause of the symptoms. It is something that affects every single aspect of her life and our lives as her parents and family. She will live her entire life with this disease, it will never go away, it will never resolve itself and she will never be 100% healthy. And I say all of this as the mother of a "lucky" CHD survivor. Her heart disease can be corrected to allow her to live a more normal life, she is here with me tonight, I am watching her grow up and thrive. I know too many Mother's who can not say that about their children. No parent should ever have to bury their child, but sadly that is the reality for a (much too large) number of families affected by CHD's.
I know this is a ranting blog, but it angers me when someone tries to downplay the severity of Congenital Heart Disease. I know part of the reason for the downplay is the lack of knowledge, and awareness, and for those people I hope that they never have to experience this life, and they are never thrown into this world. But if you are reading this, you are affected. You owe it to Maddie to educate yourself about this monster, and you owe it to yourself to seek out information about something that is clearly touching your life.
I feel like I know so much about CHD's, and I have so much information and support behind me that I need to do something with it. I need to share my knowledge, and I need to make someone else aware, and I don't just mean someone saying "Hey I know a kid that had open heart surgery." If you don't know the name of her condition, learn it, if you don't know what it stands for, research it, and if you don't know the symptoms and warning signs of CHD's, educate yourself. This could be your life, the next child diagnosed could be yours, and you could go from your beautiful carefree existence into the dark world of CHD's, cardio-thoracic surgery(ies) and life expectancy statistics.
1 in 100 babies are born with Congenital Heart Disease, what if that 1 was yours?

Girls...

2011-01-07T21:55:00.000-08:00

My Mom always reads me this comic, she was drawn to it because of the main character being named Zoe, it's funny how something like that will make you love (or hate) things. I don't know why, but for as long as I can remember my Mom has always read the comics on Sundays. I went through a phase when I read them with her, and then I became "too cool" for them, and now I sometimes feel like I am living in one. ;)
It's funny because in the "Baby Blues" comic strip, the little girl, Zoe, reminds me of my Maddie, not my Zowie. My Zowie is sweet, she wants everyone to love her, and she is easily offended. My Maddie, on the other hand, is a little more onery than that. ;) This comic also reminds me of Maddie because she makes this adorable pouting face when she is mad at you, she crosses her arms on her chest, points her nose in the air and makes a fishy face with her lips. She has perfected her pouty face, but she hasn't perfected holding onto it. She forgets she's pouting just as quick as she started and life goes back to normal. It's really cute, and I hope when she's a teenager it is just as easy to pull her out of that pout. :) Zowie will pout and put on a sad face, but all you have to do is smile, threaten to tickle her, or accuse her of hiding her smile and she gets over it. I am amazed almost daily by my daughters and just how opposite they truly are.

Christmas Day!

2011-01-04T13:52:00.001-08:00

Merry Christmas!

Christmas morning my mom and dad (not previously mentioned biological father, but dad) come over and watch the girls open their gifts from Santa and we exchange our gifts. They were scheduled to come over at 7:00 (they go to my sisters house to watch my nieces and nephew after they leave our house), we actually had to wake up both of the girls to open their gifts this year, can you believe that? Santa must have thought they were very very good girls this year, because they received quite the haul! The big hits this year were the VReaders from Gram and Papa, Maddie's Nickelodeon Wii Fit game, Maddie's Olivia backpack and Zowie's pack of Rapunzel, Maximus and Flynn Ryder dolls. They both got exactly what they wanted, unfortunately my camera died so I only have a few cute pictures.

Christmas Eve

2011-01-04T13:34:00.001-08:00

Recently my biological father decided to contact me and start putting forth an effort towards our relationship. This has been a "trend" for him in the last, oh, 26.5 years of my life. There are times when he has gone days, weeks, months or years (8 to be exact) without contacting me at all, so I never really get to invested in spending any amount of time with him when he does decide to "reappear" because I never know how long it will last. This stretch has seemed to be the most successful thus far, and I feel like for once he is spending time with me because he feels like it, and not because his wife/girlfriend/counselor is forcing him into it. We have gone on a few lunches/dinners/breakfasts and even a trip to the zoo. Oh, and he actually caught one of Zowie's softball games, and the 2010 heartwalk, so I am able to give credit, when it's due of course, and say that he's making an effort.
Anyway, Christmas Eve the girls and I (Artie was at work) went over to his house to celebrate Christmas with him. He bought Zowie the lifesize Rapunzel doll, which was exactly what she wanted, and Maddie got the Dora talking dollhouse (which is all she has talked about for months), the girls were super excited with their gifts, and it was quite funny watching him open up toys and play makeup with the girls. The girls also got gifts from my little sister, which were big hits with them! She bought Zowie a Moxie girl that came with makeup and hair paint, and Maddie some interactive dinosaurs that talk to eachother. Oh, and they both got Zhu Zhu pets, which they love.

Radio City Rockettes!

2010-12-20T13:12:00.000-08:00

The Wednesday after we got home from Disneyland we had tickets to go see the Radio City Rockettes. This is their first time leaving New York, so it was a pretty big deal for alot of the people there. I didn't know much about them, so I wasn't as excited as I should have been (I don't think). The show ended up being AMAZING and we all loved it. The backdrop was awe-inspiring throughout the entire show, they had a few really cool skits involving Santa, and the girls were mesmerized by the entire show. Maddie turned to me once and asked if it was over yet, and when I said no, instead of her usual "awww..." she actually said "yes, cause I like it, Mom." :) Maddie can be pretty hard to please, but this show kept her attention the entire time.

Disneyland!

2010-12-17T19:07:00.000-08:00

Last weekend we packed up the girls and threw them in the car at 4:00 am without telling them where we were going. :) I must tell you that my children do amazingly well on long road trips, even when they are awake, so i'm not totally crazy.
We got into Anaheim around 1:00 and kept asking the girls if they knew where they were. We were right next to the main entrance of Disneyland when Zowie noticed a bus with Buzz, Woody and Jessie on it, that was it, the main tip off and she knew it, we were at Disneyland. We parked our car and hopped on a shuttle to Disneyland right away and spent the whole day there. I have been at Christmas time once, the girls hadn't seen it, and neither had Artie. We got to see the Christmas parade, all of the decorations and the new "World of Color". The only thing we missed was the Christmas Fireworks show (we waited over an hour at a cafe to watch them and then they told us it was "too windy"). The girls absolutely loved being at Disneyland, Zowie is a die-hard autograph collector (even though she got all of their autographs the last time we were there in March) we stood in a very very long line to meet the newest Princess, Rapunzel! My girls absolutely looooved the movie Rapunzel and most of Zowie's Christmas list revolves around Rapunzel merchandise, so this was a huge deal. She was very sweet, chatted with the girls and took a bunch of pictures and they even got to meet Flynn Rider (Rapunzel's "Boyfriend"), it was amazing for them.

While we were standing in line to ride It's a Small World the clock struck 5:15 and they turned on all of the lights, it was beautiful and we were so happy we were there when they all turned on, it's amazing how much they decorate for Christmas!

We also happened to walk right by the Princess palace when there was no line so the girls got to meet allllll of the Princess's at the same time, without waiting, at all! That was awesome, because the next day the lines were outrageous!

We made an appointment for the girls at the "Bibbity Bobbity Botique", Zowie chose the Tangled package which included a Rapunzel wig, makeup, nail polish, sash, backpack, ring and jewels.

Maddie chose the "traditional" princess package, which included everything except Rapunzels wig, so she got a pretty little tiara instead. The experience for them was absolutely magical and you could see how amazing they both felt during the entire process.

It was an amazing 3 days, we were able to get some fresh made candy canes (they only make 120, 2 times a week during christmas.) You actually have to get in a line to get a ticket to purchase the candy canes. It's a crazy process but cool to have something like that! The girls (including Aleah) all got to try another seasonal treat, a Mickey Peppermint Mousse, it came in a Mickey Mouse coffee mug, and it was covered in Christmas-y sprinkles and edible glitter, it was super good, and the cups are adorable! Even though it was more crowded than during our trip in March it was totally worth the crowds to see how amazing the entire place looked at Christmas. We would do it all again in a heartbeat.

Turkey Day Survey!

2010-11-24T21:25:00.000-08:00

1. I always do dessert. This year I am making a pumpkin/gingerbread punch bowl cake, and a chocolate mousse grasshopper pie. I am also making a hot spinach artichoke dip.
2. We spend thanksgiving at my grandparent's house, they live about 30 minutes away, so we drive.
3. We have always had Thanksgiving with my grandpa (my grandparents divorced when I was 1 and it was "his holiday" with my mom and aunts). We eat dinner and then read all of the black friday ads planning our attack method! :)
4. I look forward to the mashed potatoes and gravy, I know it's not a big deal and people eat it all the time, but I pretty much only eat it on Thanksgiving. No, my Grandpa doesn't make it just for me.
5. My grandparents, my mom and dad, my aunts and their families and sometimes other random people, but the core people are always the same. (Unless the "other" parents have the kids, like this year.)
6. NO! No Christmas decorating until Thanksgiving dinner has been eaten! We go cut down our Christmas tree the Saturday after Thanksgiving, I lovingly refer to this day as Green Saturday. :)
7. BLACK FRIDAY is a holiday! Yes, yes, yes, and I have even been known to force my dear hubby to accompany me to midnight madness at the outlet malls and then I will shop well into the middle of Friday, with no sleep.
8. We are a casual bunch, jeans and a shirt or even some workout clothes for those of us that do the run to feed the hungry Thanksgiving morning.
9. This is our first year of doing the run to feed the hungry, it's a 5k or 10k run/walk.
10. Yes I have, I hosted a Thanksgiving dinner for my in-laws last year or the year before, I enjoy cooking and I thought it was fun!

Life, lately.

2010-11-16T20:47:00.000-08:00

Halloween was super fun! Maddie was Rex (Dinosaur from Toy Story) and Zowie was Ariel (The Little Mermaid). They were soooo cute, even though most people thought Maddie was a boy! :( (Her hair was tucked into the dinosaur hat and she had a blue trick or treat bucket.)
We ended up going to 3 different events where the girls got to wear there costumes so we actually got some use out of them this year. Zowie's school has a fall festival, Artie's work had a little party where the kids got to trick or treat, and then Maddie's speech therapy place had a little fall festival including trick or treating. :) All in all, a fun couple of days for the kids.

Cheerleading wrapped up for Zowie so now we are just doing speech therapy two nights a week (and of course school every day), pretty soon speech will be over and I will have nothing to do on weeknights. (Yeah, right.)

Parent teacher conferences are this week, and i'm excited to see what the girls' teachers have to say. This is my first conference for Maddie (I.E.P.'s are sorta like intense conferences I guess, but this is the first actual conference.)

Wish me luck! :)

Cranio Facial Panel

2010-11-09T15:11:00.000-08:00

We met with the cranio facial panel 2 weeks ago, it was a pretty incredible experience. Our appointment was slated for 3 hours (which is pretty intimidating), we were greeted by the organizer for the panel, she is the sweetest woman and kinda gave us the rundown on how the days events would play out. We were shown to an office (not a typical "doctor's office), more of a research office that belonged to one of the geneticists, there were tons of toys waiting for Maddie a checklist hanging outside of our door. (The checklist was a list of every single doctor or specialist we were going to meet throughout the appointment and they crossed themselves off of the list 1 by 1.) The doctors came in 1 by 1 throughout the three hours, each one knew Maddie's history, why we were there, and didn't have to ask any of the usual questions you get from a doctor who has no experience with your child. We met geneticists, ENT's, orthodontists, nurses, speech therapists, child life specialists, case workers, plastic surgeons, maxilofacial surgeons, etc. It was amazing. This entire team of 20+ doctors work hand in hand to make sure that the children they see are having all of their needs met and then some. They were able to refer me to several pediatric dentists that have had positive experiences with other children from the cranio facial clinic, and I found out that we are ahead of the curve. The only referral we recieved was one for a repeat naso-endoscopy (in a year or two), and they started talking to me about having Maddie's ear "fixed" surgically in the next few years. The latter I am not so sure about, I know her left ear sticks out, but at this point ay type of elective surgery sounds terrible to us. They told me they usually try to repair them between the age of 5 and 7 so we have a couple years to get used to the idea (or not).
Everything looked really good for Maddie from a medical standpoint. Her teeth are "normal" (apparently VCFS children sometimes have mis-shapen teeth), and other than her speech delay and some fine motor delays she is doing beautifully. The doctors were all amazingly nice and informative and I would highly reccomend the cranio facial panel to anyone with concerns.
We met a younger guy in the waiting room (he was newly 19) and this was his first time coming to meet with the cranio facial panel alone, he looked so nervous, even though this was the 10th time he had been to one of these appointments. We met him again in the hallway when all was said and done and he told me how easy it was to go alone, and how he felt proud of himself for overcoming his fear. :) It was cute to see, and made me hopeful for the future.

No answers...

2010-10-15T00:27:00.000-07:00

The NasoEndoscopy didn't go quite as we had planned. Maddie was all fine and ready to go, not nervous, if you asked her what was going to happen she would tell you that the doctor was going to "pick my nose", and then laugh. We get into the room, she chats with all of the doctors and is happy as can be, and then it happens...the evil ENT decides to spray the numbing solution up her nose...Maddie instantly starts screaming, writhing around in the chair, begging for me to hold her, telling the doctor goodbye, pretty much anything she can possibly think to do that will make us get the picture that this appointment is OVER. I start talking to her, calm her down a little (scale of 1 to 10, 10 being worst, at this point she is a solid 7, a large improvement from the 10 she was seconds before.) I tell her that her ipod is in the car, all charged up and ready for her to watch cartoons when she is done, and this instantly calms her to the point where she can actually start repeating phrases for the speech therapist.
The ENT then pulls out the scope and starts talking to her about it, the tears start flowing instantly and he is able to stick the scope in her mouth for about 2 seconds while she screams.
We wait a few minutes, get her back down to a point where she isn't screaming and jumping away, and they try to stick the scope in:
Attempt 1: she turns her head.
Attempt 2: (I am holding her head) She yanks it out of the doctors hand.
Attempt 3: (I am hold her head and a nurse is holding her hands) The scope gets into her nose, and the second they get a visual of her palate she gets a rush of adrenaline and is able to pull her hands away from the nurse and yank the scope out.

(This is the face Maddie would have been giving at this point, realizing she had defeated all 5 adults in the room.)
We gave up.

The ENT talked to me about what a later diagnosis/repair will mean for her, the speech therapist talked to me about what to focus on for the next 6 months in our speech sessions...and the appointment ends. The doctors tell me not to look at it as a "wasted" appointment, but I can't help but feel a little disappointed. They won't try again for another year, so we won't have any palate answers until then.

At this point we are going to work on articulation in our therapy sessions, and try to help her overcome her compensatory errors. (Using S for Z, Dropping syllables, etc.)

I hope we make tremendous progress with her speech and realize that the surgery isn't necessary, but my heart tells me that there is a bigger problem and she will probably need some sort of surgical intervention to reach her maximum potential.

But for now, Que Sera Sera, we gave it our best shot, and we will work our booties off to keep making progress.

Submucous Cleft Palate and Naso-Endoscopy

2010-10-06T19:54:00.001-07:00

So, while we were in Salt Lake City at the VCFS conference one of the specialists told me that Maddie had a Submucous cleft palate. I was shocked, in 4 years we had never heard that, and to be completely honest I was angry. Most of my anger stemmed from the fact that we had been to so many appointments with so many specialists and not one of them mentioned even a suspicion of a cleft or her being hyper-nasal. (Breathing out of her nose while talking)
We have an appointment next week to do a naso-endoscopy which will confirm or completely rule out the cleft. At this point we are pretty sure that she does have the cleft and will be shocked if the results are negative. What is a submucous cleft you ask? Here it goes:
What is a submucous cleft palate?
(After you read or scroll through this incredibly long winded explanation, I will write more below. :) )

A submucous cleft palate is one type of cleft palate. The word “palate” refers to the roof of the mouth and the term “cleft” indicates a split in the palate. The palate consists of both a bony portion (hard palate) and a muscular portion (soft palate). At the end of the soft palate, the small finger-like projection of tissue that hangs down is called the “uvula”. The term “submucous” refers to the fact that the cleft is covered over by the lining (mucous membrane) of the roof of the mouth. This covering of mucosa makes the cleft difficult to see when looking in the mouth.

A submucous cleft of the soft palate is characterized by a midline deficiency or lack of muscular tissue and incorrect positioning of the muscles. A submucous cleft of the hard palate is defined as a bony defect in the midline or center of the bony palate. This can sometimes be felt as a notch or depression in the bony palate when the palate is palpated with a finger. Often a submucous cleft palate is associated with a bifid or cleft uvula.

What are the effects of submucous cleft palate?
When a submucous cleft is present, the muscles of the soft palate may not function properly and the individual is at risk for speech problems, middle ear disease, and swallowing difficulties. However, there are some individuals with a submucous cleft who have no apparent problems. Of importance to all persons with the submucous cleft, and their family, is the knowledge that submucous cleft has the same genetic (hereditary) risk as an obvious cleft of the palate.

How can a submucous cleft palate be identified?
The most common reason that a child is evaluated for a submucous cleft palate is abnormal nasal speech. Other symptoms may include persistent middle ear disease and feeding/swallowing difficulties. A submucous cleft palate may be identified by the presence of a bifid uvula; a very thin translucent strip of lining (mucosa) in the middle of the roof of the mouth; and, a notch at the back edge of the hard palate that can be felt by the fingertip. However, in some children, the palate may appear normal on physical examination despite the fact that the child is experiencing speech problems, persistent ear disease, and/or swallowing difficulties. In such cases, special tests are necessary to fully assess the palate. These tests include x-ray examination and nasopharyngoscopy (looking at the palate through a very small tube that is placed in the nose). These evaluations are most commonly done by members of a cleft palate team. If you suspect your child has a submucous cleft, you should contact a local cleft palate team.

Should a submucous cleft be treated?
The decision to treat a submucous cleft palate depends upon the consequences of the submucous cleft and is not based on the fact that it is present. The most common reason for treating an individual with a submucous cleft of the palate is because of abnormal speech. The speech has a nasal sound because air is lost through the nose. In such cases the child’s speech should be evaluated by a speech pathologist who, in consultation with other professionals, can diagnose the cause of the problem. If the palate cannot prevent air from escaping through the nose during speech, called velopharyngeal incompetence or VPI, then surgical repair of the palate will be required. Speech therapy alone cannot correct velopharyngeal incompetence.

Feeding/swallowing problems can sometimes be managed through the use of special techniques which the feeding consultant on the cleft palate team can suggest.

Ear problems should be treated by the child’s regular physician or by an ear, nose, throat specialist. Treatment may include the use of antibiotics and/or surgical insertion of ventilating tubes in the ear drum. Proper management of the child’s ears is essential to ensure good hearing and proper speech development.

If the feeding problems and/or chronic middle ear disease persist and are related to abnormal soft palate muscle function, then treatment of the submucous cleft palate is indicated.

What treatment is available for submucous cleft palate?
For individuals with submucous cleft and velopharyngeal incompetence, the most common treatment is surgical. The surgery consists of reconstruction of the abnormal tissues with a palatal repair with or without pharyngeal flap (pharyngoplasty). A primary goal of this surgery is to allow for normal speech production. This surgery is done in a hospital under general anesthesia. Pre- and post-surgical evaluation by members of a cleft palate team should be part of the overall treatment program.

In a limited number of cases, velopharyngeal incompetence associated with a submucous cleft palate can be treated with an appliance that fits in the mouth and attaches to the teeth. This appliance is generally made by a dental specialist (prosthodontist) associated with a cleft palate team. Again, pre- and post-treatment evaluation by the cleft palate team should be part of this treatment program.

Soo...pretty much she has a split in her palate and they have to repair it or her speech will never be completely "normal".

The naso-endoscopy will give us a better idea of which route the doctors are going to take with the whole situation, and then in about 3 weeks we are meeting with the entire cranio-facial team (15 doctors and specialists) which will be pretty intense, and hopefully informative!

Happy/Sad/Depressing/Uplifting...

2010-10-06T13:19:00.000-07:00

I just came across a bunch of baby pictures of Maddie and Zowie (Z is 2 in most of these), and it broke my heart! I miss them being babies! I am happy they are healthy and thriving now, but my goodness how I wish I had one more day to hold baby Maddie (knowing what I know now), and not being stressed 24-7 about her health. I feel like I was robbed of "babyhood" with Maddie. I think all mother's with medically fragile babies probably feel the same way. You are in this constant state of worry with the baby, always playing the what if game and never knowing exactly what the future will hold for your precious little bundle of joy. I never felt like I could just relax and enjoy the moment, I always felt like I was looking for signs of heart/breathing issues, making sure she was breathing, making sure she wasn't crying so she wouldn't have a tet spell, etc. It is so hard to look back on those days because I know I didn't enjoy it as much as I should have. I thank God everyday for giving me my girls, I just wish I would have known 4 years ago that Maddie was going to be with me today and I think I could have relaxed a little and enjoyed those moments more.

Jonas Brothers and Demi Lovato

2010-10-05T15:12:00.000-07:00

As part of Zowie's birthday gift I bought her tickets to see the Jonas Brothers and Demi Lovato in concert. We bought the $10.00 tickets when they were on sale (lawn seats) and knew she wouldn't care where she was sitting, she would just be excited to be there! My aunt was going with my little cousins, and my grandma was taking her granddaughter so my Mom went ahead and took Zowie while I stayed home with Maddie and made signs for the heartwalk. Zowie and I worked on a sign before she left, she chose what it was going to say and I helped her line up the letters and make sure she spelled it right. :) I painted Zowie's nails and wrote "Jonas" on them, and then I made her have "rockstar" hair and she wore her Jonas brothers shirt from last years concert. My cousin Noah, (the least shy child on the planet!) chatted up an employee from the venue and ended up getting everyone's seats upgraded from lawn tickets to actual seats, for free. Zowie ended up getting a lightstick and a new Jonas Brothers shirt (which was almost identical to last years), and had a thoroughly amazing time at the concert. My Mom called me during the concert and let me listen to Zowie screaming at the top of her lungs, it was hilariously cute and I loved hearing how much fun she was having! All in all, probably one of the best $20.00 purchases I have ever made, ever. ;)

Heartwalk 2010

2010-10-05T14:15:00.000-07:00

Thank you to all of Team Maddie Grace this year! Our team was much smaller this year, mosly just family and very close friends, which is fine by us! We had some new and unexpected members this year, but it was an awesome day and we were so thankful for everyone who came out to support our little lady! Maddie had a blast, even though she wasn't interested in having pictures taken we managed to get a few cute ones. She loved seeing all of Team Maddie Grace in their shirts, she realized quickly that the shirts said Maddie and that was super exciting for her! :) We decorated her wagon with survivor signs and quite a few people stopped us to talk about her, and to compare scars. At one point an older gentleman (easily in his 70's) came up to us and showed Maddie his scar so they could compare, it was incredibly sweet and it never ceases to amaze me the type of people we meet at this event each year. It is so important to raise awareness for congenital heart disease, and I am amazed each year by how many people are shocked that it's even possible for a baby to have heart disease. I think we blow most people away when they realize that the survivor we walk for is only 4 and was born with it.

Birthday Party!

2010-09-27T19:53:00.000-07:00

(Bad Bloggy Mom)

Sorry, I know this is suuuuper outdated, but I have been busy. In July we celebrated the girls' 4th and 6th birthdays! Can you believe that? I can't, the time is just flying by and I just wish it would slooooooooow down!

We do a joint party for the girls every year (so far), I know this won't last forever, and at some point they will cringe at the thought, but for now they enjoy it, so I am thankful! :)

We celebrated at BounceU, it was the first time I have done a party for them away from home, and they had a blast. I can't say I didn't love the fact that I had to do zero preparation, zero cleanup and my house wasn't a disaster when the party was over! :)It was super fun, all of the kids enjoyed themselves (and most of the adults), and we are just thankful to everyone who came out to celebrate our little ladies' special day(s).

(Listening to the rules and watching the safety video)

(All the kids, it was a pajama party)

(Not the best picture, but the girls sitting on the "present throne", the party was over and they were so tired!)

VCFS Conference in Salt Lake City, Utah

2010-07-26T22:11:00.000-07:00

I am blessed with a supportive family, I have always had a supportive family, and when I married my amazing husband, my support system expanded. As soon as I found out about the VCFS Conference (Velo-Cardio Facial Syndrome-the genetic disorder Maddie has) I knew in my heart I needed to go. Flying would have cost a fortune, and it was only about a 9 hour drive so it was decided I would drive to Salt Lake with Maddie. Then my Dad decided he wanted to come too, he had never been to Salt Lake and thought it sounded like fun, so he joined us. Wednesday the 14th my Mother in law picked up Zowie and took her back to her house so that I could leave early on Thursday. Maddie, my Dad and I were on the road by 4:15 am and after a very long and boring drive we made it safely. We checked into the hotel, registered for the conference and I scoured the itinerary for hours trying to decide which speaker I was more excited to hear from. (I am a huge nerd.)
We then headed out to dinner and came back early for bedtime.
The conference lasted from 8 to 5 Friday and Saturday and then 8 to 12 on Sunday. My poor Dad hung out alone and ran around Salt Lake exploring while Maddie was in the playroom at the conference. We met a speech therapist who was doing evaluations on some of the kids and after about 60 seconds she diagnosed Maddie as being hyper nasal and having a sub mucous cleft palate. WOW, I was shocked we had never, ever heard that from ANY of the doctor's, therapists, etc that we have met. She suggested we meet with a craniofacial specialist back home, and promised to email me her opinions on Maddie's speech. I then went back into the conference just in time to hear a speaker talk about how important it is for kids with VCFS to be followed by a craniofacial panel. (This is only the second time I had ever even heard of a craniofacial anything in my life.)
I thought it was a long shot but when we got home Sunday night from the conference I emailed Maddie's geneticist and told her about the conference. By 10:00 am Sunday morning I had a reply saying that a referral for a craniofacial team had been submitted. The same day the receptionist for the team called me to talk to me more in depth about what the craniofacial team consists of.
There is a group of doctors/specialists/therapists that work together to make up the craniofacial team.
We now have 4 appointments scheduled with different specialists and then on October 30th we will meet with the "panel" for a 3 hour assessment. If Madison is diagnosed with a sub mucous cleft palate it will answer a lot of questions about her speech and the issues she has with articulation, but it could also mean that another surgery looms in our future. The repair surgery for a sub mucous cleft palate is a reconstruction of the palate and sometimes a pharyngeal flap. We obviously don't know if that will be the road we need to take, so we aren't going to worry about that bridge until we come to it.
I learned a ton of other information during the conference but among the most interesting to me was this:
Madison doesn't actually have "DiGeorge Syndrome" which is what we have been calling her genetic disorder all along. Madison has the Deletion of 22q11.2 or Velo-Cardio Facial Syndrome, DiGeorge syndrome is the immune deficiency that is associated with VCFS, and when Madison was a baby we found out that she doesn't suffer from the Immune deficiency at all. So as weird as it feels we are removing DiGeorge syndrome from our vocabulary and calling it what it is, VCFS. ;)

There is so much more, much too much to type out on this blog, but I am so thankful for Maggie (my mother in law) for babysitting Zowie for me for 2 days, and my Mom for watching her the other 2, and taking her to reading class so that I could go to Salt Lake and concentrate on learning as much as possible about this syndrome and all that it entails.

Camp Taylor Family Retreat 2010

2010-06-29T19:48:00.001-07:00

We (BIG) Heart Camp Taylor!! We had the joy of spending last weekend at Family Camp, this was our second year, and we loved it even more this time around. This year camp was held in Santa Clara at the Hilton Hotel. It was way different than our experience last year, but it was amazing all the same. ;) Friday afternoon we got to the Hilton, checked in, dropped our bags and ran back down to the lobby for some "family crafts". The girls got "face painting" (Quotations because Maddie got a puppy painted on her arm instead of her face), Zowie got her standard girly painting, a butterfly. :) We then headed to get a family photo taken and then it was on to make a Family Crest to hang in the dining/game hall. I wrote the names and the girls took care of the rest. At this point we had met our mentor, Kendra (awesome young lady with Heart Disease!) and metup withour FAVORITE heart/digeorge family! We Loooove the Bolima's and we were so thrilled to be spending the weekend with them, and to even be sharing a dining table for every single meal. ;) Then we had dinner and a little "talent show" with some of the families and kids from Camp, the girls had fun listening to everyone talk and sing and then it was finally bedtime! Saturday we had breakfast, did some crafts and then headed to Great America for a fun day full of rides. We met up with everyone from Camp for Lunch and a huge group photo, and then after riding the carousel we were so ready for naptime. The girls, however, were ready for swimming so we went back to the hotel, put them in bathing suits and headed down to the hotel pool. Zowie is a fish and loves the water, and while Madison enjoys splashing people she gets cold so fast it is hard for her to swim. She started shaking and shivering pretty quickly so we got her out of the pool and I took her up to our room to warmup before dinner. Zowie decided to suprise me and start putting all of her swimming lesson knowledge to good use, and she was swimming solo for the first time!
After dinner our awesome little mentor took Zowie and Maddie to arts and crafts and Artie and I were able to play a little Bunco. It was our first time but we had a ton of fun, and Artie was his usual crazy self so everyone got to know him a little better. ;) (Good thing or bad thing? you tell me!)
The girls also got to have a Pajama and popcorn movie night where they were able to watch Shrek the 3rd. :)

Sunday morning came too quickly, we had breakfast and chatted a bit and then I went into the Q&A with Dr. Desai which is seriously an amazing experience. Artie took the girls to the arts and crafts so I could listen to the doctor talk, when I got out the girls were so excited to show me the super cute build a bear stuffed animals they had made, and all of their crafts.

We then sat down and listened to some testimonials from families about their experienes with Camp Taylor and I, of course, cried like a baby.

We just loooove Camp Taylor and everyone involved in it, as corny as it may sound the families at Camp seriously feel like family to us, and it's the one place in the world where I feel like people just "get it". I don't feel like I have to explain anything or wonder what someone is thinking when Maddie decides to dance around with her shirt over her head, because every single person at camp knows just how beautiful those scars truly are.

And where else can you see a group of grown men (one being a Pediatric Cardiologist and another an Attorney) dancing together to "I'm Too Sexy". Camp is seriously something that I wish every single family affected by Congenital Heart Disease could experience. Our lives have changed because of Camp, we have met families that we would have never known otherwise, and we now know that we are part of something much bigger than we had ever imagined.

Summer, Summer, Summer Time! :)

2010-06-09T22:59:00.000-07:00

It is officially summer vacation in the Stone house! Artie and I started the summer off with some fun stuff for the girls! We bought them a new swing set and a pool! The swing set is taking forever to put together, but the pool is up and ready to go! We signed them both up for swimming lessons, and of course, true to form, Maddie will not cooperate, hell, she doesn't even pretend like she is listening to her instructor. She is SO stubborn. We have also signed up for cheer leading (which starts late July), a Reading class for Z, Gymnastics for both girls and Karate for Z. Putting that in writing makes me feel like we are a little crazy. :)

Camp Taylor is in 2 weeks, we can't wait, it was such an amazing experience last year, and we can't wait to do it again! This year it will be even better because we will be staying in a hotel room, with an AIR CONDITIONER! Last year it was SO HOT and our room didn't have screens on the windows so we couldn't open them for fresh air, it was a little miserable, but obviously worth it!

We got the girls' end of the year report cards and Z got straight A's which I am thrilled about. We are putting her in a reading class as a precaution, Artie needed a little extra help with reading when he was younger so we just want to make sure we are on top of things. Maddie is going to summer school, which is wonderful because she needs some help reaching her I.E.P. goals that were set for her for last trimester. She wasn't able to meet any of her goals so far, so the extra help is wonderful.

So much fun...

2010-05-12T23:34:00.000-07:00

Tonight it was so beautiful outside, I took the girls (and Nicholas) outside for an afternoon of fun. When we walked out the door it was 4:15, the next thing I knew it was 7:00 and the girls were filthy! We blew bubbles, ran through the sprinkler, ate some yummy hamburgers and hot dogs (thanks to Artie), and made some gorgeous chalk drawings on the concrete. :)
It's amazing how much fun it can be to just watch them run around and have fun with no worries. I am so thankful that we decided to put the fence around our front yard, makes it so easy for us to hang out in the front and not worry about one of them accidently running into the street or anything. Our next project/investment is going to be a big swingset, we have our eye on one, but it's a little out of our price range for now. We keep waiting for the price to come down more (it has already dropped 300 bucks!), so hopefully it will continue to decline and we can buy one before they sell out! :)
Birthday party planning is in full swing, and the girls couldn't be more excited!
Can you believe there are only 3 weeks left of school? Where did the time go? My baby just started kindergarten yesterday, didn't she? It sure seems that way. I guess when I look at it from another angle, it seems like it's been years, look at all we have accomplished since the first day of school this year.
I guess all parents feel like the time passes too quickly, which is why you are supposed to just enjoy it while you can, because if you blink long enough your baby will be graduating high school, and you will have even more gray hair. ;)

1 Week

2010-04-14T22:54:00.001-07:00

It has been 1 full week since Maddie started school. Do I sound crazy when I say that I can already see a huge improvement in her speech? Instead of just saying please, she now says "please Mommy" and she is starting to very consistently say two word phrases. She loves school so much, we wait outside for her bus every morning and as soon as she hears it coming she starts clapping and jumping up and down. :) Her teacher sends her home every day with a note that tells me what she did during the day and any other information she thinks is important for me. Today she painted a rain cloud, played with play-dough, played "kitchen" during recess and worked on letter recognition. I think it is wonderful that her teacher sends these notes home. I know her speech is coming along wonderfully but it is still hard for her to tell me what she did during the day so it's nice to know exactly what went on. It's adorable to see the smile on her face and hear her giggles when she sees the bus pull up, I love knowing how happy she is with her class, it makes me wish we would have jumped through all of the hoops earlier so that she could have had a longer school year. :) Pictures next time, I promise, I just don't have the memory card right now to upload them!

How Mother's were chosen.

2010-03-05T21:16:00.000-08:00

I just found this, and I love it.

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint…give her Gerard. He is used to profanity"

Finally He passes a name to an angel and smiles, "Give her a disabled child." The angel is curious, "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today; she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" Asks the angel, his pen poised in mid air.

God smiles, "A mirror will suffice."

3 Year Heart-Aversary

2010-02-27T21:03:00.000-08:00

(Maddie, 9/30/2006-2 months old.)

It's hard for me to believe that 3 years ago tonight I was in the car driving to UCSF to have Madison admitted for surgery. I remember how surreal it felt being in the car, and being so terrified that she was going to have a Tet spell. (Cyanotic Episode= turn blue and pass out). I knew things with her heart were bad, which is why they were operating at 8 months, instead of closer to 2 years as we initially hoped. We drove down the night before because she had to be there at 7:00 am, and we were afraid we would hit traffic/get lost/have a panic attack/etc. on the way down. We made it in one piece, and we spent the night in a hotel. Most of the night was spent holding her, and just staring at her precious little face...and crying, lots of crying.

I remember going to UCSF to sign the surgical paperwork, talk to the surgeon, meet the anesthesiologist and nurses and do all of her pre-op stuff. Artie had just started a new job, and he had to wait until the following night to come down, it was a tough thing to do without him, but in my heart I knew that it was probably for the best. I wasn't alone, at all, my Mom, Zowie and my aunt Carrie were with me, they were staying so strong, trying to hard to be tough for me. I am forever grateful for the support they provided to me.

At the time of Madison's surgery I didn't know anyone with a "heart baby". I knew the people I met at UCSF during pre-op, but as we all know, each situation is very different and it's hard to talk to a stranger about what's going on. I think everyone tries very hard to comfort you, but no one truly knows what you are going through unless they have been in your shoes. But the ironic part is, as much as you want someone to understand, you NEVER want anyone to feel what you feel.

I can't believe that it's been 3 years already, I remember at the time being so terrified and wondering if Maddie would ever have a "normal" life. There are so many unknowns when it comes to surgery that major, I mean there are so many risks and complications that you truly never know what the future will hold.

During her surgery we sat in the waiting room that had a little fish tank, one of the nurses had told us that if we paid attention we may see Maddie come by with the surgical team after her surgery. I think we all sat staring out the window the entire 4 hours. We saw a few beds go by, none of them were Maddie, every time we could hear a bed coming we would all get nervous and anxious to see if it was our girl, there was always a disappointment when we saw that it wasn't. Finally, we heard a bed coming, we looked up and we saw a little tiny arm, a little tiny hand, and a little head FULL of black crazy hair. We knew it was her, we all jumped up and the just at that perfect moment, the doctor wheeling her bed down the hallway gave us a thumbs up sign. Everyone immediately burst into tears and starting cheering and hugging.

We made it, we made it through the surgery, our girl was tough and strong, and all of our thoughts, prayers and hopes were answered. Obviously surgery was not the only hurdle she had to overcome that week, but the biggest one was over, and she was okay.
We had been warned that she would be on a ventilator, she would have her surgical incision, she would have drainage tubes, she would have a space-aged looking thermometer on her head to watch for fever and of course she would have IVs. We were also told she would have "Pacemaker Wires" just in case her heart had a hard time starting again following surgery.

No one tells you that the drainage tubes are actually more gross to look at then the actual surgery, they are big tubes with flat ball looking things at the end, and they are full of blood, most of the time. It was tough for me to see those, they looked terrible and seeing her blood in them really got to me.

She was on the Ventilator for the rest of the day and at 4:00 am the following day she was successfully weaned off. She had a nasal cannula in at a very low setting for 4 hours and then she began breathing on her own. Her pulse Ox reading was 100% and we could not believe it! Slowly the drainage tubes came out, the pacemakers wires were cut (we did not need them at all), and our girl went back to eating and playing like nothing had happened. 7 days later we took her home with us and we have been enjoying every moment with her since!

So this weekend our little family is taking off and celebrating our lives as a "normal" family! We are off to Disneyland to see all of our favorite characters and to celebrate our health!

And finally, a big thank you to all of you who were with us 3 years ago when we were going through the toughest moments of our lives.
*Mom*Butch*Zowie*Grandpa*Penny*Maggie*Tammy*Carrie*Leslie*Tori*Isabella*Veronika*Rob*Felishia*
We love you all and we will make sure that Madison knows that each and every one of you was there, and that the people who couldn't make it were with us in spirit and praying for her every step of the way!

Speech Therapy, Colors and Questions

2010-02-23T17:22:00.000-08:00

We started back at Speech Therapy a few weeks ago, Madison's new therapist seems a little apprehensive with her. Our therapist is a man this semester, which is a little difficult for Miss Maddie because all of the men in her life are wrapped around her little finger, and this one isn't. She gets frustrated when he tells her no, or won't let her do what she wants, which is an interesting thing for her. I am hoping she realizes soon that he is her new teacher, and not just another Grandpa, Uncle or Cousin she can push around. :)

We are starting to question is maybe Maddie has some level of color blindness. She has no preference for colors, and she can't ever properly identify any of her colors yet. She may, by coincidence pick up a block or toy and call it by the right color, but it is never consistent. She was able to seperate all of the blocks at speech during our last session, but they all just so happen to be the same shape and color, so we think she was identifying them by shape.

Her "new thing" is pouting and saying "but but but" when you tell her not to do something or ask her to do something she doesn't want to do. I have to get a picture of her doing the new pouty face, she puts her nose in the air, crosses her arms and makes a fishy face with her mouth. It is soooo cute! :) We just love that little lady.

CHD Awareness 3/2/2007

2010-02-11T12:45:00.000-08:00

Madison Grace came to us on July 12, 2006. Because of her stubborn streak, her unwillingness to cooperate and error on the doctor's we thought she was not due until September. We were sure she was coming to us prematurely and we were terrified. I started having contractions around 7:00 on the 11th, but thought for sure they were just "braxton hicks" contractions and nothing to worry about. I got Zowie to sleep around 8:30 and got into the shower thinking the heat would help with my back pains I was having.
At 9:30 I was in quite a bit of pain and woke up Artie, we got Zowie dressed and headed for Kaiser. We got there about 10:00 and the nurses didn't think I was truly in labor, I was standing talking to a nurse, attempting to get them to listen to me when my water broke. I immediately broke down crying because I knew there was no turning back once my water broke. They admitted me to the hospital, gave us a room and once we were all settled in we called my Mom. It was 11:30, my mom arrived, frantic soon after saying it was too early and panicking. I told her to take Zowie and get her out of the room and Madison was born within 10 minutes. She came out a WHOPPING 9 lbs! The nurses took one look at her and said there had been a mistake, she was full term and healthy. We were so relieved, we immediately starting calling and letting everyone know what happened and that she was healthy and doing beautifully.
We spent that day admiring her, and the following morning we were scheduled to go home. One of our nurses had mentioned a heart murmur, which I was also born with, so we were not alarmed. About 30 minutes before we were scheduled to go home a nurse came in to check on Madison and to make sure that her murmur was nothing serious. They were supposed to be gone for 30 minutes, and I wouldn't let her go alone so I sent Artie into the NICU with her. My mom was on the way to the hospital with my grandmother, great grandmother and Zowie to visit. After 30 minutes I asked another nurse to go check on Madison and Artie and see where they were, the next thing I knew Artie was running into my hospital room crying and telling me that the doctor said something was wrong with Madison's heart and that they might have to life-flight her to UCSF or she might die. I called my Mom, hysterical and told her to take Zowie home because something was wrong with Maddie. I ran into the NICU and met with a cardiologist who told me they didn't know what was wrong with her heart yet, but that it was serious and we were waiting for a Pediatric Cardiologist to come in and help with the diagnosis. The next thing I knew I was meeting with the Peds. Cario and he was telling me, Artie, my Mom and my Aunt Carrie that Madison had Tetralogy of Fallot. He told us that she would have to have open heart surgery, but he didn't know when, and that she needed to be transferred to Kaiser on Morse Ave. to be monitored in their NICU. We signed the consent paperwork and the ambulance arrived to transfer her. I remember following the ambulance to the other hospital and just sobbing in the car with my Mom. Artie has always had a hard time crying in front of me, so we rode in different cars, at this point I can't even remember who he was with, all I could think about was my tiny little baby being in that ambulance and me having no control over the situation.

Once we arrived at Morse Ave. we got Maddie settled into the NICU and met with Dr. Hattendorf, she confirmed the diagnosis and assured us that we had up to 2 years before she would require surgery, depending on how well her heart functioned. The doctors put an IV in her belly button, after many attempts to find a vein they could use, apparently children with Heart Disease have very thin veins and they are very hard to access.

We spent 10 days in the NICU during which time Madison was also diagnosed with Velo-Cardio-Facial-Syndrome, and hypocalcemia. She was given Calcium supplements and placed on Similac PM 60/40, which is a high calcium formula, and also a Vitamin D supplement.

We took Madison home on July 24, 2006, just in time for my grandmother's funeral, and my birthday.

During the next few months we celebrated a lot of firsts with Maddie, and always wondered when surgery day would come. We were blessed with almost 8 months of "perfect health" we never experienced a Tet. spell (cyanotic episode), or any other heart related complications.

Madison had open heart surgery at UCSF on March 2, 2007. She was just shy of 8 months old, and weighed just over 13 lbs. It was a terrifying experience, our surgeon, anesthesiologist and nurses were amazing and we knew she was in wonderful hands, but you still fear and prepare yourself for the worst.

We were blessed, her surgery went beautifully and she was able to come home with us 1 week later. We had a bit of a roller coaster ride during recovery, but right now I can't bring myself to talk about it, so I will post tomorrow, thanks for reading.

Tetralogy of Fallot

2010-02-09T23:00:00.000-08:00

Tetral---what? :)
I know, when we first heard Maddie's CHD diagnosis we couldn't pronounce it, we made the Cardiologist write it down for us, and draw us a picture of what exactly it entailed. Ever wondered? Well...here it is for you!

There are 4 defects that come in a package deal with Tetralogy of Fallot:
1. Venticular Septal Defect: A hole between the two bottom chambers of the heart (the Ventricles)
2. Pulmonary Stenosis: Narrowing of the right ventricle.
3. Overriding Aorta: The Aorta sits over the top of the VSD (ventricular septal defect)
4. Right Ventricular Hypertrophy: The right ventricle is too thick or "muscular".

There you have it, T.O.F. in a nutshell. Want to see a picture? Here is a normal heart:

Here is a Tet heart:

Crazy huh?
Tomorrow we will talk about the personal stuff, today I just needed to share the technical stuff.

<3

Congenital Heart Defect Awareness week!

2010-02-08T21:42:00.000-08:00

CHD week is upon us again, here are some startling statistics about CHD's.

CHD Facts
Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes

All of this information was found on www.itsmyheart.org

Thank you for reading!

Lately...

2010-02-05T10:20:00.000-08:00

I am a bad blogger! I haven't posted anything "real" in a while, just my complaint blog when my stuff was stolen.
Life is going to become very busy starting next week. Maddie goes back to Speech Therapy 3 times a week (2 times on Monday and 1 time Wednesdays), Zowie is starting softball and we are currently awaiting a cognitive evaluation for Maddie so that she can hopefully start preschool before the school year is over.

We are also getting ready for our Disneyland trip that we are taking to celebrate Maddie's 3 year Heart-Anniversary. Can you believe it? 3 years already! :)
She is doing amazing and her speech is improving every single day!

I still don't have a replacement camera, so no pictures today! :(

Sooooooo upset.

2010-01-17T23:01:00.000-08:00

I HATE Thieves.

That being said. Last week my purse, wallet, camera (with memory card), a library book and some other stuff was stolen out of the car. We were downtown with our friends, celebrating my friends divorce being finalized. It was a bad way to end a really great night. I am trying to be thankful that my ID was in my back pocket, that there was no cash in my purse and that no one was hurt, but it's hard to look at the bright side when you feel so violated. This poor little blog post will be void of any adorable pictures of my children, thanks to the jerks who took off with my new camera. I lost all of our pictures from Christmas, which is heartbreaking. I have a few that I uploaded to the blog, but they are gone otherwise. I hadn't uploaded/printed any pictures from my memory card since the camera was purchased in September.

It really stinks that this happened, I suppose it taught me a lesson about keeping things in the car (my purse was completely hidden in the rear center console, the thief broke the window and dug through the console to find it.)

On the bright side, fun things are coming and we can't wait. I will have to replace my camera so we can start capturing all of the girls' adorable moments again. We are looking forward to CHD awareness week 2010. Maddie's 3 year heart-aversary (3 years since her open heart surgery), DISNEYLAND and "Twinsie" pictures with Maddie and Ava. :)
A happier post will follow in a few days, i'm still bitter.

Christmas 2009

2009-12-31T05:52:00.000-08:00

My mom and I took the girls to ride "The Polar Express" train ride a few weeks ago, it sells out within hours, so we were anticipating this amazing ride...we were a little disappointed. Granted, our tickets were for 3:30 in the afternoon, and I think it would have been a little cooler in the dark, but we were disappointed. The train drove for 30 mins toward "the north pole" where they had a sleigh and santa sitting, and then santa got on the train, passed out little bells to everyone and then went on his merry way. They read The Polar Express book during the ride, and handed out a cookie and hot chocolate to each passenger, while the employees on the train dressed the part of a few of the characters from the book. I guess it was kind of cool to experience it once, but I am doubtful that we will return next year unless we can get tickets for the 7:30 ride.

Zowie's school hosted a craft night for the kids, they got to make some snowflakes, a reindeer pin, cards, penguins (with the shape of their foot), and a few other cute little things, they loved it.

Maddie's speech therapist bought her a Santa Mr. Potato Head, she absolutely loved it! We got her therapist a cute storage clipboard and stuffed it with little "rewards" to help replenish her supply since she always seemed to let Maddie get away with taking a handful of things home after all of her sessions.

Christmas eve was spent with my in-laws, we had a great time hanging out, having dinner and opening gifts. Our niece, Riley, who is 9 months old is mobile now so it was funny to watch her crawl around and get into things. She was more interested in the wrapping paper than her gifts, but her Mom and Dad seemed to appreciate the cute little outfits we bought her! :) Zowie got an art Easel, a purse stuffed with all kinds of girly goodies, an airbrush tattoo gun, coloring book, markers, crayons and a game for her DS that Santa was bringing the next morning (we kept the game wrapped and she opened it at home after the DS) :)
Maddie got The Wonder Pets Flyboat (she is 100% obsessed with Ming Ming Duck from The Wonder Pets right now), The Wonder Pets Schoolhouse, and a purse with goodies as well. Artie and I each got a Spafinder gift card, and I can't wait to use them! :)

After dinner at Tammy and Steve's house we came home and let the girls each open 3 small gifts from us. They got underwear (I found Wonder Pets and "hero" underwear for them), Maddie opened her Minnie Mouse Pajamas, and a stuffed Mickey holding a little Mickey Mouse blanket, and Zowie opened Buzz Lightyear pajamas and a Woody doll holding a little Toy Story blanket. They put on their new pajamas and went to bed with their cute new toys and blankets.

Christmas morning we woke the girls up at 6:45 (My Mom and Dad have a yearly tradition of coming over Christmas morning to watch all the grandkids open their gifts from Santa and to exchange gifts with us, and we were the first stop this year, so we got to wake up the earliest). Zowie was in a hurry to get all of her gifts open, and then wanted to unwrap anything else she could find that still had paper on it. Maddie took her time, and wanted to inspect each gift after she opened it, she finally just gave up and Zowie unwrapped her last 5 or 6 gifts for her. Zowie got her DS, games and accessories for the DS, a little video camera, some singing Hannah Montana shoes, Toy Story bedding and room decor, a few dolls (icarly, wizards of waverly place, baby alive), magnetic paper dolls and the entire line of Zhu Zhu Pets and Accessories. Maddie got the Nickbook Laptop, The Tag Jr. reader with books, Disney Princess dress up shoes, a Ming Ming Doll, coloring books, a Fur Real Pet Duck (she loves ducks right now), a Ni Hao Kai Lan doll, puzzles, a camera, a cute litle outfit, and some other various toys that I can't remember. :) They had a wonderful Christmas, Santa went a little overboard on them this year, but they are good girls and they deserve it. :) Zowie's favorite thing has to be her DS, and Maddie's is definately the Dress up Shoes!

My Mom and Dad bought me a Cricut for Christmas! I was with my Mom when she bought it, so it wasn't a surpise, but man is it cool! I am so excited to revamp the girls' scrapbooks with cute decorations from my Cricut! The price of the Cricut was unbeatable on Black Friday, and I am so glad that I got one! :)

We also attended the annual Christmas Party at my Mother in laws house, the Hearts of Hope Christmas Party, our annual "kid party" with my family where the kids do different Christmas crafts, and my friend and her daughter came over for a day of cookie and cake decorating. It was sure a busy Christmas season!

BABY LOVE...again! :)

2009-12-11T16:51:00.001-08:00

Welcome to the family Nicholas! We are sooo happy to finally meet you little guy!

My aunt and uncle welcomed their first baby together (5th total) into the world early this morning. Nicholas Aaron weighed in at a whopping 9 lbs. 5 oz and 22 inches long! He is absolutely beautiful with a head full of thick black hair and perfect little skin.

Zowie told me tonight she knew he was going to have black hair because she wanted him to be Maddie's twin. :)

Highway robbery...

2009-12-04T08:46:00.000-08:00

"But Mom, I nneeeeed a Zhu Zhu pet for Christmas"

I feel your pain if you have heard the above sentence. These are "THE toy" this year, and while they are certainly reasonably priced (7.99-9.99 depending on where you find them), they are impossible to find!!

I had a little insider information that helped in my journey, we learned when the good people at Toys R Us stocked their shelves, and would go there at that time to make sure we could buy at least 1. Most stores have an empty place on the shelves where the Zhu Zhu pets once lived, and that is all.

That certainly doesn't mean you can't buy a Zhu Zhu pet, you could always turn to the trusty people on ebay to take care of this "need" for you, I mean after all, how much is the price of your childs happiness on Christmas morning? It certainly should be worth more to you than say, 140.00 for 32.00 worth of hamsters, right? This makes me crazy. I can not even begin to tell you how frustrating it is to me that some jerk is taking these reasonably priced, actually affordable popular toys and selling them for rediculous amounts of money. It frustrates me to think that a family who is suffering in this economy is losing the opportunity to buy their child this sought after gift because Mr. Ebay bought out all of the local supply and is selling them for 4x what they are worth. I understand the thought behind it, but the economy stinks and it is certainly easier to fulfill a 10.00 gift, then it is to fulfill the wish for a Wii, or an Xbox or some other high priced item that is on that same Christmas list. Maybe this just frustrates me because I live in a family with only 1 income, and we don't have a ton of money just sitting around for Christmas, or maybe I am just over-reacting because I think it sucks that someone is profiting off of parents like me who just want to make their kids happy on Christmas morning...either way, I think it stinks.

Oh Christmas Tree, Oh Christmas Tree...

2009-12-03T15:33:00.000-08:00

When I was younger my Mom signed up for "Groiler" Disney ornament club, I got 1 Disney ornament per month, for probably 3-4 years. A few of the ornaments "bite the dust" so to speak each Christmas season, but the ones that have survived bring great joy to my daughters. We let the girls decorate the tree this year, with little help from Mom or Dad, and just a small step ladder. The tree is so large that we can't actually fit the star on top, so it is a little "naked" on top.

Every year my mom buys all of the grandkids a clay ornament to kind of represent what that kid is into at the time, they all get "babies first Christmas" ornaments their first year, and then they get themed ones. Here are some of our favorites from our tree.

Thank-Full!

2009-11-26T08:05:00.000-08:00

I have a lot to be thankful for this year, I don't think that I always show my appreciation for everything I have, and for that I feel guilty. I am sitting here listening to my husband and my beautiful kids snoring...thinking about the last year and all that has gone on, and all that we have to be thankful for.

First and foremost, our health. I never, in a million years, thought that I would be able to celebrate Madison's health. When we were given her diagnosis, it felt like we would be spending the rest of her life just waiting for the next set of bad news. Which, in theory I guess is true, but what they don't tell you is that you will have days, weeks, months or even years of good news to look forward to. I am thankful that we are in a stretch of those good days!
I am thankful that Zowie is 100% healthy. I can't believe she is 5, in kindergarten, learning how to read and becoming this amazing little person. She is the most loving, caring, sweet and beautiful little girl. I am so thankful that I get to be her Mommy.
That being said, I'm thankful for Maddie. She reminds me daily that she can do ANYTHING she puts her mind to. That girl is such a handful, she makes me tired just thinking about the trouble she gets into from the moment she wakes up to the moment she finally closes her little eyes and falls asleep at night. She is a beautiful, spunky, determined, hard headed and funny little girl, and I am thankful to be her Mommy, even on the days where I count down the seconds to bed time.

I am thankful for Artie, I grew up with an amazing example of what a "real dad"* should be, and Artie is just as amazing as my Dad is. I could have never imagined our lives becoming what they are today, but I wouldn't change one second of our past, or our present for anything in the world. I love the fact that he is always willing to do whatever it takes to make sure we all have everything we want/need, and he never complains about it. I have never heard him complain about working 18 hour days, going to work on his day off, or even spending his last few dollars to buy the girls happy meals at McDonald's instead of buying something for himself. He's an amazing husband, and an amazing Daddy, and I am thankful for him.
*(if you don't know me personally, my biological father has never been an active part of my life. Lucky for me, my mom met my Dad when I was 7 and he instantly became my father, and raised me as if I was his own. We don't use the words "step dad" or "stepsister" in our family, he is my dad, they are my sisters and we are all family.)

I am also very very thankful for family.
We have a whole lot of family, near and far, but they are all very dear to our hearts and we are blessed to have them. Even if we don't' talk everyday, or even every week, we love you all and are so glad you are in our lives!

We are incredibly blessed, it's sad that sometimes it takes a day devoted to giving thanks to remind us how fortunate we are. Sitting here reflecting on my thankfulness is putting a joyful spin on my day, and helping me remember just how lucky I truly am!

About Zowie...

2009-11-21T18:13:00.000-08:00

It occured to me that lately my blog has been about Maddie, and I have been neglecting my beautiful 5 year old. We just wrapped up our first season of cheerleading, Zowie's passion for cheer did not subside, not even after (4 MONTHS) 3 night a week practices, and early Saturday games. The first month of cheer she actually practiced 4-5 nights a week, she is one dedicated cheerleader. She also cheered while walking around the house, the store, walking to school, doing her homework, riding in the car, visiting family, eating breakfast/lunch/dinner...you get my drift i'm sure.
Her coach awarded her with her trophy and a special medal just for her that says she was voted most "spirited" on her squad. I completely agree with this decision, as she would BEG me to take her to practice from the second she got home from school every single night! She made me a little crazy, but it was worth it to see the joy on her little face.
She also was given the "responsibility" award from her kindergarten teacher this month. We just finished our parent teacher conference in which her teacher informed me that she is a "joy" to teach and she loves having her in class. She said she is the most respectful, sweet and good natured child and that everyone loves her and wants to be her friend. I am a proud mommy, let me tell you!

Cardiology Update!

2009-11-12T16:05:00.000-08:00

We met with (another) new Cardiologist today, as a "follow up" to the last appointment. This Cardio. was much more prepared for our appointment and had actually reviewed an echo from 2007, 2008 and 2009. I am happy to report that her pulmonary artery is not leaking at all anymore! Woohoo! Her heart (lower right side), the right ventricle, is enlarged, however, it is not more enlarged then it was last year at our appointment. It is holding steady at its current size and her 02 sats are still 100%! This cardiologist is optimistic that she will not need any surgical intervention for at least 5 years, but he is hoping between 8 and 10 years! It was a wonderful appointment and I feel so relieved after talking to him today!

I.E.P. Meeting!

2009-10-20T11:11:00.001-07:00

If you know me, you know I was DEATHLY afraid of our IEP meeting on Friday. The woman who "tested" Madison for speech warned me that I wouldn't like what I had to hear, and that she didn't want me to be upset with what she had to say. I was terrified. My mom was home watching my nephew, so Maddie stayed with her while I went, (Artie had to work). Bottom line was, I knew she had speech delays, this was no suprise to me, and she actually didn't do too terribly bad on the testing. The parts she did "fail" she only failed by very small amount. She was approved for a regular preschool class, and speech therapy through the school district for 30 mins per week. An "average" child scores between 85-110 on the preschool testing, and Maddie scored a 63...not perfect, but not the worst either. We also came to an agreement that some of it was due to the fact that she was distracted during the testing, and the poor kid just wanted her momma. (I wasn't allowed in the room during testing). So, we will now begin the journey of finding her a preschool and getting her into that routine. We are also going 2 days a week to Sac. State for speech therapy, and seeing some major improvements just in the last month or so since she started therapy with them! We are really impressed with their program and the speech therapist that we are working with. She asked me to bring in pictures of family members, to help Maddie with names and such, and she turned them into a book for her, complete with "sound buttons" and when she pushes the buttons on each page they say the name of the person in the picture! SO CUTE! :) Maddie loves it!

Siiiiick.

2009-10-14T12:57:00.000-07:00

For some reason, Strep Throat has decided to run rampant throughout our family the last two weeks! My aunt, uncle, cousin, Madison and myself all have/had it! It has not been fun, luckily we caught Maddie's early enough where she didn't experience any of the agony the rest of us were feeling!
I am finally today, after 1 week starting to feel human again, which is amazing, of course the weather has changed and it is pouring rain as I sit on my couch typing this! The strep throat has been accompanied by this illness that left us all exhausted, and wanting nothing more than a comfortable bed to curl up in...or maybe even a soft carpet.

Zowie had a little fever today, so I kept her home...now she is running in circles around the house, so i'm not sure where that little fever came from...it's certainly not the energy sucking virus we all had, that's for sure!

In other news, Zowie has her first loose tooth! Once she realized it was lose she couldn't leave it alone so now it is quite "wiggly" :) You can tell which tooth it is in the picture below because it is sitting higher than her other bottom teeth.

Reading!

2009-09-22T16:53:00.000-07:00

Just a quick post before the evening madness starts, Zowie got to bring home her book bag from school today which means...(drumroll please), she is recognizing and reading some words!!
WOW!!
Go Zowie! Her teachers goal for them was to bring home a bookbag before Christmas break, it's still September!
Only a little over a month into Kindergarten and already starting to read! I am sooo proud! We celebrated her little victory at Baskin Robbins after school! :)

Heartwalk 2009

2009-09-21T09:30:00.000-07:00

First off, a HUGE thank you to our 2009 Team Maddie Grace! We had some new members this year, and our team just keeps continuing to grow!
It was, as always, a wonderful experience, we love participating every year and being able to raise awareness for the little survivors. The grand total for team Maddie Grace members this year was 67! Wow!
Madison got a ton of attention in her big fluffy tutu, and loved the cheerleaders at the end when they were chanting her name! :)

We are so thankful for all of the love and support, and we hope to keep on inspiring people to join us each and every year!

Maddie Update!

2009-09-16T15:44:00.000-07:00

So the Cardiology appointment didn't go as I had hoped, but it wasn't completely terrible...if that makes any sense. The new Cardiologist didn't have a chance to review the old echo from last year, so he isn't sure if the narrowing of her artery is getting worse, or if it is similar to or the same as last year. He also mentioned that her heart is slightly enlarged, again, not sure if it is larger than last year, or the same. He said he would review her old echo and get back to us if he wants to bring her in for some more follow up, but even in the event that it looks bad, he could wait 6 months to call. I feel like he left everything very up in the air with no real answers as to how her heart is functioning, and I was highly disappointed with the end result of the appointment. She weighed in at a whopping 29 lbs...:)

This Saturday is our 2009 Heartwalk and Team Maddie Grace is even bigger this year then it was last year! :) We are up to 60+ members and counting!

This is the adorable little outfit I ordered Madison for the walk, could she look any cuter? Oh, and check out her cute new haircut! I am sad to see her curls go, but I think she looks adorable with short hair also! :)

We also start Mommy&Me Soccer tomorrow morning with my friend Jen and her adorable little girl Ava, I can't wait to see them out on the soccer field!

What if?

2009-08-30T20:25:00.000-07:00

I spent the day today with my Mom, my grandparents and Artie and the girls...I did a really good job of keeping my mind off of tomorrow for the most part, we made a stop at the new Boudin store in Roseville (sourdough bread to die for!!) and got home around 5:30. I made some yummy steak fajitas for dinner, got the girls ready for bed, made lunches and attempted to start cleaning my house when my mind finally got the best of me. I just keep running through all of the different scenarios that could play out tomorrow. What if the new cardiologist says she needs surgery, what if he isn't as happy with her health as we have been, what if we find out that her "real" cardiologist is in fact gone for good. What if she needs another surgery, what if she needs another surgery, what if she needs another surgery? This question is on repeat in my mind right now...I can't shake it, I can't tell myself that nothing is wrong and that he will be just as pleased with her as her cardiologist 1 year ago...I am a realist. While I appreciate all of the "she's fine, they are going to say she is perfect" encouragement from the people I/we love, the reality is, no one knows. Before her initial surgery we thought everything was fine, we knew a surgery would come someday, but we were completely blindsided by the "she needs surgery this month" diagnosis. I know that surgery is not the end of the world, I really do, but I am not as naive to this world as I was 2.5 years ago. Before her first surgery I thought once the surgery was over, and she was breathing on her own, we were out of the woods. I know now, this is not true, this is not the light at the end of the tunnel, it is merely one less bump in the road. I now "know people" that have lost their children to congenital heart disease, to open heart surgery, to complications following surgeries...I know things that then, I was oblivious to. I think I do a relatively good job of hiding my fear, but sometimes I think it needs to just come out. This blog is a wonderful outlet for me, and honestly, at this point, I hope no one is reading...at least not today, this is my weakness...I know I should be strong for Maddie and for Zowie, but sometimes it is just so damn hard to put a smile on my face when I am so scared.

How on earth?

2009-08-29T00:23:00.000-07:00

I wonder sometimes how my 2 children with the same biological parents could be such polar opposites? I have just talked about Madison and her quirks in the post below this one, so this one is just for my Zoe Zoe.

Zowie is a girl that prides herself on pleasing people. She hates it when she does something wrong, can't stand it when people are fighting/arguing (even if they are "play fighting"). She is very sensitive, takes everything to heart and has been known to shed some tears when things aren't going her way. She is also very stubborn and pig headed, but only in certain situations. For example, if right now I said, Zowie go clean your room, a huge fit, complete with tears would erupt and she would scream and cry until she inevitably pukes. Now if I say, hey Zowie can you help your sister clean up your room, she was playing with your toys, she will run in her room and clean up the entire room without a single complaint! It cracks me up! She aims to please and just wants everyone to love her and be happy and proud of her, all the time. When she found out that her teacher was going to put smiley faces on a calendar everyday that she was good in class, she decided right then that she was going to get one everyday, all year and never ever get in trouble. So everyday when I get to her class and I peek into the window as soon as she spots me she gets a huge smile on her face and gives me a thumbs up, I can see her mouthing the words "I got a smiley face" to me from across the room. :) She is so sweet, and smart, she cracks me up. It's crazy to me to think that by the end of this school year she will be able to read her own bedtime stories, that seems like such a "grown up" task, i'm not sure i'm ready for my baby to be able to read. I am so proud of her and the sweetheart that she has continued to be, I just hope those mean kids in her class don't take away any of that innocense that she has. I know kids can be mean, but it seems like everyday she comes home saying someone pushed her or made fun of her. I am trying to chalk it up to the fact that she is very sensitive and probably just holds on to it a little longer than most kids do...but it is a difficult thing to hear that someone is mean to your baby! Here are some pictures of my beautiful, smart, sensitive, loving, caring, nurturing, clumsy, constantly cheering, school loving, picture coloring, fashion diva.

Did you ever think?

2009-08-29T00:00:00.000-07:00

I spent (almost) all day today with Madison. We were out running some errands, so there was no time for a nap, and with it just being the two of us, I was given the chance to just enjoy my little girl. We had to get a birthday gift, and after going to Target and munching on some popcorn at 9:30 in the morning, we realized that we couldn't find what we needed and had to move on. Off to Wal Mart we went, where my crazy little girl picked out this shirt, and refused to let me put it back on the rack!

The shirt says "I may be cute but I still bite" which is oh soooo true! Zowie has been the victim of her random vampire biting more than once recently, and it is not a fun phase!
If you haven't been around Maddie lately, she is convinced she is a dragon/pirate/dinosaur. If you ask her what she is going to be for Halloween, she quickly responds with an Arghhh, and her best pirate scowl. (Zowie is going to be a ladybug...they couldn't possibly be more opposite).

Madison is doing things daily that amaze me, I stop sometimes and I am just blown away by the little person she is becoming. It seems like everyday her speech improves a little more and she comes up with new words...it's such an amazing thing to experience with her. I feel like we took for granted how quickly Zowie began talking and how easily it came to her. By the time she was 18 months she talked like a 5 year old and could repeat words and sentences perfectly. Only now do I realize how lucky we were that it all came so easy to her, as learning to talk has been such a struggle for Madison.

Tonight at dinner Artie and I were talking about something and I said "oh creepy" and Madison looked at him and said "creepy" in the same exact tone I had used, we both started cracking up, which of course threw her into a fit of her "new" laugh (completely fake laughter). She is so funny, and has the biggest personality crammed into that little body!

I never would have thought that my sick little newborn would, 3 years later, be the Beautiful, crazy, trying, rambunctious, stubborn, adorable, wild, sweet, loving, growling, pirate loving, furniture climbing, biting, eating machine that she is today! I am oh so thankful for the opportunity to be her mom...she has taught me so much in the last 3 years.

Nerves.

2009-08-26T23:39:00.000-07:00

On Friday I found out that Maddie's cardiologist, that we LOVE, is "on leave", all they could tell me was that they have no idea when, or if she will be back. This appointment was supposed to be about information for the preschool teachers, helping me deal with my anxiety about sending my little girl to preschool, and how to deal with the teacher's when it came to her health and well being. Now the appointment is about meeting this new Cardiologist. This man who knows nothing about my child, has never met her, never heard of her and doesn't know her "normal". If you have a child with a CHD you know that no two of them are alike. Madison could be lined up with 100 kids that have her exact diagnosis, and none of them will be exactly the same, they will have completely different "normals" and they will have completely different past experiences. I am also fearful because of the leak issue we were having. Madison's "patch" over her VSD (ventricular septal defect) was leaking at what appeared to be an alarming rate following her OHS (open heart surgery), so much so that the surgeon thought she was going to require another OHS. They took her into the Cath. lab and the results revealed that the leak looks worse on the echo screen then it really is. This doctor has never seen this leak first hand, he doesn't know what it used to be, and has no experience with her and this issue. Our cardiologist is very conservative when it comes to her patients, she will never rush into a surgery unless she is absolutely certain that it is necessary. I fear that this doctor is not so conservative, and may drop the "s bomb" (another OHS) on us on Monday. I feel sick to my stomach worrying about this and haven't been able to sleep since I got the call about our beloved cardiologist. I am praying that this turns out to somehow be a blessing in disguise, but it just doesn't feel good to me. I will update everyone after out meeting on Monday, obviously, but I am asking you to just pray, hope, cross your fingers, toes, eyes, etc. that things go well on Monday and that this is either a temporary situation, or that this doctor turns out to be some amazing man that we will add to our "dream team".

The "dream team" is what my Mom and I dubbed Madison's group of doctors and specialists, there was only 1 week link, which was her endocrinologist, and she has since moved away and been replaced with a much better fit for us. So now we feel like the most important part of the "dream team" is missing. :(
It takes a long time to trust a person with your child's life, and we honestly loved and trusted our cardiologist with all of our hearts.
Thanks for listening!

REMINDERS

2009-08-18T11:58:00.000-07:00

2 weeks ago I had one of those weeks where you actually NEED a reminder of why you are lucky, why you are blessed, why you should be thankful instead of cynnical, and why you should just be happy you are...well, just you. You end the week scratching your head trying to figure out exactly what you could have done to have deserved all of those curveballs that have been thrown at you...

Tuesday night, my darling little girl decided she is "too cool" for her crib and opted to catapult herself out of it around 9:30 p.m. I am not a fan of injury or illness in either one of my kids, but Madison just makes me a nervous wreck. So instead of getting blissful sleep on Tuesday, I slept on the couch tossing and turning listening for Maddie so I would know if she decided to get out of her "big girl bed" and wreak havoc.

Wednesday was a big first, the first day of kindergarten, a day that is full of bittersweet moments, and tears. My child loves school, she loves it so much that she couldn't sleep Tuesday night in anticipation of all the fun awaiting her on her first day of Kindergarten. So not only was I trying to keep an ear on Madison, I was also trying to lull Zowie to sleep so that she was not some whiny mess come Wednesday morning.

I took Zowie to school after taking some adorable first day of school pictures, and came home. My mom and I decided to do a little shopping and have some lunch while Zowie was in class. When we arrived back home Madison was carrying her cup and not paying attention and tripped in front of our house, hitting her head on the bricks and instantly getting a HUGE bump on her noggin. This was her first head injury, so I was of course, freaking out. I called the advice nurse, and then her doctor and they both reassured me that the insane amount of swelling was actually a "good thing" and that she sounded fine. (She was dancing and singing in the background).

So Wednesday afternoon my dear husband went and bought me a used suburban, he assured me it ran beautifully and I was going to love it. He brought it home, went to start it up to take it to have it cleaned and.....it wouldn't start.
After hours of working on it, he finally figures out the problem. It takes him all night Wed. night and it still isn't finished. He finally gives in about 11:00 and decides to make a run to Taco Bell for dinner, he takes his truck the whole 2 blocks it takes to get to Taco Bell, and on his way back, his truck breaks!!
We went from 3 cars, to 1 very quickly.

So Thursday due to some scheduling conflicts it comes about that I won't be able babysit our niece anymore, thus eliminating the Suburban from our "needs". Artie gets home from work, fixes his truck and assures me that everything will just work itself out.

Friday I get up, take Zowie to school and decide to spend the morning with Carrie (my aunt), I drive to her house pick her up (she's 5 months pregnant) and head out to do some shopping. We are going through an intersection and all of a sudden my car just stops...it's still in drive, it is still on, it just won't move. No gear moved it, it just acted as if it was in park. A nice man stops and helps me push it off to the side of the road and we get a tow truck. Come to find out my transmission has been recalled but since we bought it used (6 months old with about 1300 miles on it), we can have it repaired at only 25% out of pocket. That is such great news, right? WRONG! Our 25% of the cost is...$2000.00!!! We called every single transmission shop from here to Yuba City and they all said the same thing "Sorry, we can't fix it, you're going to have to go to the dealership!" :( Such a headache.

We haven't figured out what to do with my car, so I am borrowing my Mother in law's old car, and after a week of sleepless nights of Madison terrorizing our home, I broke down and purchased a "Crib Tent" if you have a terrible two, or three year old that won't stay in their own bed, then the crib tent is a lifesaver!

Heartwalk 2009

2009-07-23T19:28:00.000-07:00

These are pictures from Maddie's 2nd heartwalk, 2007. I don't have any from last year or 2006 to show, but we are very much looking forward to the 2009 heartwalk which will be Maddie's 4th walk!

https://www.kintera.org/faf/reg_new/register.asp?ievent=292584&lis=1&kntae292584=5E14605184374490AD87EB92E5CF8C7B&jt=3304672&teamsName=Team+Maddie+Grace
Want to join team Maddie Grace? Click above, or copy and paste and it will take you to the registration page. We love having everyone with us at the heartwalk supporting our amazing girl! We place an order for Team Maddie Grace shirts about a month before the walk, so if you want a shirt please let me know! Last year we had over 50 people walking in her honor, and it was truly amazing.
By the end of the race the Sac. State Cheerleaders were so excited to finally meet Maddie that they began cheering for her and chanting her name as soon as we turned the last corner. It was an amazing and heartwarming experience that I will never forget. We would love for everyone to come out and show their support and help raise awareness that heart disease doesn't just effect older people, it can start at birth and is never actually cured.
The walk is on September 19, 2009 at William Land Park and usually begins at 9:00.
Please let me know if you would like more information!
Thanks!

Madison's Story

2009-07-22T22:15:00.000-07:00

Madison (Maddie) was born on July 12, 2006 at 9 lbs and beautifully pink. The doctor that delivered her mentioned a heart murmur but reassured us that it was normal and that "most" babies have murmurs at birth. We spent the first night with her in the hospital in awe and kept thinking how lucky we were to have 2 beautiful, healthy daughters. On July 13 we were awaiting discharge from the hospital when a nurse came in and said she just wanted to "check her out" and listen to her heart again and that it should take about 30 minutes, her daddy accompanied her to the NICU where they were going to take a closer look. After 30 minutes her dad still wasn't back and, I guess you can call it mother's intuition I knew something was wrong. About 10 minutes later my husband, Artie, came running through the door of my room crying saying that the nurse told him that something was terribly wrong with her heart and they didn't know if she would live, if they would have to life flight her to another hospital or what was happening. They paged a cardiologist and we were awaiting word on her heart. Finally after what seemed like hours we met an on call cardiologist who calmed us down by saying that while it was very serious, Tetralogy of Fallot was repairable by surgery. He told us he didn't know when or where but that she would need surgery someday and to watch for signs of "Tet" spells. He then informed us that he was transferring her to Kaiser on Morse ave's NICU where they would monitor her more closely and take care of her. We put her in the ambulance about 30 minutes later and once arriving at the NICU we met with Brandy Hattendorf who is now her cardiologist. She did a more in depth echo and confirmed the TET diagnosis, and told us we had up to two years to do the surgery as long as Maddie didn't have any problems. We spent 10 days in the NICU and during our stay Maddie was also diagnosed with DiGeorge syndrome. We took Maddie home on July 24 and had no health issues at all, so in February of 2007 when Dr. Hattendorf told us she wanted to have the surgery completed by the end of the month, it caught us completely off guard.. We headed to UCSF on February 28 for a surgery scheduled for March 1st, however, a 16+ hour emergency surgery kept Maddie out of the operating room and we were bumped to March 2nd. The surgery went beautifully and Dr. Karl was very pleased with the results. We were released from UCSF on March 9th, after a couple of scary situations. While removing Madison's "Art" line Maddie started bleeding profusely and ended up needing two blood transfusions to replenish her blood supply. On the morning of the 8th an echo revealed a leak coming from the patch that was placed over her VSD and the doctor's were concerned that she would need to go back into the OR for another surgery. We were devistated by this news because she was supposed to be released on the 9th. The morning of the 9th they took Madison into the Cardiac Cath lab to get a closer look at the leak, the up to 4 hour procedure was over in 50 minutes so we knew it was either really good news, or really bad news. Luckily, it was good news the leak looked worse than it was due to a "bad angle" on the Echo, so after about 6 hours of recovery time from the cath we were sent home with only Lasix and Calcionate (for her Digeorge). On March 11th Maddie was diagnosed with RSV which was a 2 week long ordeal that she handled flawlessly, we took her into her pediatrician almost every day to be checked out to make sure that she didn't need to be hospitalized, and every single time her oxygen level was 100%. It has been almost two years since Maddie's surgery and we are happy to say that we have already "graduated" to annual appointments and are enjoying every moment with our "spunky" little girl! We recently were able to take Madison off of her Calcionate, so she is a medicine free 3 year old!

HOH

2009-07-22T21:52:00.000-07:00

TA-DA! This is the logo that my amazing fellow heart mom made for the support group we are a part of! We (Jen and I) have recently taken over as the care package coordinators for our group. This is a big project that we have taken on, but we are both very excited. We are putting together care packages for families with CHD (children with Congenital Heart Disease) who are newly diagnosed, facing hospitalizations, facing surgeries, or having difficulties following surgeries/procedures. This is an amazing program that I am proud to be a part of and with recent donations the care packages are getting a whole lot cooler! :)
We have decided instead of using big/bulky baskets, we ordered tote bags with our logo on them to place the care package items inside of. We got aluminum bottles, notepads, pens, beanie babies/stuffed animals, toothbrushes, shampoo, conditioner, hand sanitizer, soap, blankets, some informational pamphlets about CHD's and support, and some non-perishable snacks to place in each bag. We are still looking for donations, if you are at all interested in helping out. Also we are looking for ideas from other families who have already been through a hospitalization to help us brainstorm ideas of other things we can include in our bags!
Please contact me if you would like more information about our program, or if you are interested in donating anything to our bags!

Appreciation.

2009-07-20T23:44:00.001-07:00

(This blog was written on March 4, 2009-2 years and 2 days post-op for Maddie)

The more heart families I meet, the more thankful I become. Madison is by all accounts..."healthy". That is a funny thing to say, considering her history, but it is so true. I have met so many families facing a 2nd, 3rd, or even 4th surgery. I have met families who have had to say goodbye to their baby. I have met families who were told to just "say goodbye" because their baby was losing a battle, and I have met families who didn't even make it through the pregnancy.
I wondered when we first began the journey with Madison if I wanted to "know" other families, if I could handle hearing their stories. I didn't get involved until after Maddie had surgery, and I am thankful for that because there are so many complications and risks that I was oblivious to during her surgery. I feel like now, anytime I get to feeling sorry for her, or even for us, I am reminded to be thankful. Our situation could ALWAYS be worse, the future could always be less bright for her, and the past could have been much rockier. We have been so blessed with Madison, and we are so thankful for all of the things that we have gone through that have brought us to where we are today as a family. 4 years ago I never could have dreamed that our little family would have endured all of the things it has, and I never could have imagined how strong we would be in the long run. I am thankful for Zowie and her compassion and maturity at only 5 years old. She is the only 5 year old I know who instantly looks concerned when you mention heart disease. She is very sweet, but she is also very quick to come to her little sisters defense, she will not let Madison feel left out, or be picked on, and I love her so much for being so concerned about her sister. I have often wondered if having a "sick" sister would negatively effect her, but I see the compassion and love that she has, and I know that being honest with her about Madison's condition has changed her life already, for the better. I am thankful for Artie, because Lord knows there were times in the last 3 years that it would have been much easier to pack up and run! He is a changed man because of those two little girls he loves so much. He sacrifices so much to make sure that they are comfortable, happy and spoiled rotten! :) I love him more now then I think I ever thought possible, simply for the fact that he has been there for all 3 of us every single step of this journey.
I am thankful for our families who have supported us during the last 3 years in ways that I never could have imagined. From Madison's first 10 day stay in the NICU where we took 8 hour shifts so that she would NEVER be alone, to babysitting Zowie endlessly and making sure she felt secure and loved while we were away with Madison. For understanding when I wouldn't let anyone babysit Madison for fear that she would have a Tet spell. For walking in the heartwalk and just hugging me when I would have a meltdown. For being a phone chain whenever we had a rough appointment so that I only had to make 1 phone call, and then for waiting 20 minutes and calling me themselves anyway just to make sure I was okay. For being willing to risk jobs for taking too much time off, because it was unfathomable for all 30 people to not be in that waiting room when she came out of surgery. For thinking she is as perfect as we do, and for loving her as unconditionally as you do, and for always always always being just a phone call away, no matter what we have needed, and never letting us down.
We love you all more than words will ever be able to express, and our lives are better because of each and every one of you. Thank you for loving us and always wanting to be there. :)

Zowie's Hair!

2009-07-17T21:52:00.001-07:00

July 4th, 2009...Zowie's hair.
Well, today, my big 5 year old (5 years and 13 days actually) decided that it was time to make a change! She has been asking me for a week now if she could get a haircut like Isabella and Savhanna (my nieces) so tonight when Artie got home from work we drove to a little salon and let her do it.
She cut 18 inches off of her beautiful hair, and she looks beautiful. I loved Zowie's long hair, but I love her just as much with her short hair. She loves the cut very very much and can hardly stop herself from looking in every mirror/window/reflective surface she passes! :) I am just happy that she is happy with her decision, I don't know what we would have done had she decided too late that she didn't actually want a haircut.
We are donating all 18 inches of beautiful blonde hair to locks of love and hope that it makes some little boy or girl very happy!

Inmomnia

2009-07-16T13:21:00.000-07:00

Get it? Inmomnia...my word for insomnia...I know, I know, i'm a dork.

I'm not sure if it's just because I love to read, blog, watch things i've Tivo'd during the hectic day, need to clean, should clean, should balance checkbook, should return emails, should clean or what, but I just can not sleep at night lately!! It's really quite frustrating because I am usually super tired in the morning, and then by the time bedtime for everyone in the house rolls around, i'm wide awake! I can not nap during the day, so that's not the problem, and I have 3 kids most days to take care of (I babysit our niece, Riley, now) so it's not like I can just sit around and do nothing...it's really starting to bother me! I can't remember the last time I fell asleep before 1:00 in the morning! Artie gets up around 4:00 and i'm usually so tired that I don't even hear his alarm ringing next to my head! It's a little sad.
What's your routine? How do you "make" yourself fall asleep? I know alot of people don't have this problem and they pass out when their head hits the pillow, and let me tell you now, I am jealous if this is you!
I need to figure out a schedule before Zowie starts school, if not, the poor kid is going to be late for school all the time! Today I woke up to Steve knocking on the door to drop off Riley, granted he was about 20 minutes early, but I still hadn't drug myself out of bed! It's lame...I know.