Saturday, December 29, 2007

Alexia's 22nd birthday

Today is Alexia's 22nd B-day. Twenty-two years ago this morning the Doctor told me she would never walk and mostly likely be blind and deaf, if she lived passed 3-years-old. She is amazing, in the middle of her 4th year in college. Very bright, very social and a sweetheart. She has changed my life and made me what I am today.

Please post a Bithday greeting here as she loves to read this Blog and it would be a great surprise!

Tuesday, December 18, 2007

Party weekend

This past weekend was very busy. Amber and I threw a Holiday party at the hospital for children (with congenital heart disease) and their families. We had family portraits available (free of charge) with a potluck, Santa and tons of gifts (sold to us with a nice discount by It was a very fun night. Then, Sunday afternoon I invited 15 of my girlfriends over for a wine and appetizer party, of which I spent all morning 6:00AM to 3:00PM cooking for. It was also a toy drive for the hospital and I received a ton of toys to give to Child Life at Sutter Memorial. The appetizers were a plenty and I received rave reviews for the Onion-Thyme dip I made. I did not use the soup mix recipe, it was all from sratch and if anyone wants the recipe, please post and I will email it to you. I love all my friends, they are so wonderful and as one neighbor said "I have never seen so many beautiful women go into one house at the same time".

Happy Holidays!

Sunday, December 9, 2007

Can a seven-year-old get RSV?

If they can then I am sure my son has it or he has the symptoms that would happen if it was possible. What a long couple of nights. He had asthma as a pre-schooler and it had gone away for 3/4 years! Some virus triggered the asthma and now we are back on Xopenex breathing treatments and inhaled steriods. Fortunately, I didn't dispose of my pulmo aide. Although I did have to scramble to get the tubing and mouth pieces, getting them on a Saturday would have been next to impossible (it is a nice perk to have a husband who is a PICU nurse and happened to be working!).

Off to try to get some much needed rest........

Friday, November 30, 2007

Still looking for those words of encouragement

Don't forget, the contest. I have changed the prize but will tell no one, it will be a surprise to the winner! Tell me about a certain person's words of encouragement that helped you through a trying time. We have 2 entries, look back at the November 21st comments.

I wanted also to post about a 12-year-old girl that my husband has been taking care of at the hospital. She had MRSA in her thigh and was very sick. She was not expected to make it, the parents had all but said their goodbyes. She made a complete turn around, is off the vent,they closed the wound on her thigh and is getting better every day. If you google MRSA you will see that most of us have this staph on our skin somewhere but why did hers turn out this way and most of ours hasn't? It has perplexed me enough that I have done some reading. She still has a long haul but she is going to make it!

Monday, November 26, 2007

Advent Calender

Every year I buy Advent Calenders for my kids. I go to Cost Plus and plunk down the $8.00 for 2 chocolate filled calenders. This year I splurged, I bought this life sized Advent doll at A Toy Garden,, for Aden and Alexia, that I will hang on our wall. This store is incredible, I do almost 100% of my toy shopping there, it is a family run business. I highly recommend this place for it's product and customer service. Starting December 1st, I will fill each pocket with little goodies for each of them. Aden absolutely loves it and I am glad I did it, now I need ideas for goodies to put in. any suggestions?

Sunday, November 25, 2007

Mood of the day!

This is the energy floating around my home right now. I was enjoying the Autumn/Thanksgiving feeling and BOOM, it is gone. But that is ok, this year's Holidays will be wonderful (like usual) but throw in the Hearts of Hope Holiday Party I am helping to plan, it takes on a whole new meaning. Our support group has come together and are going to have a very special party for some very special children. I am floored by the women in this group and their willingnes to help out. We really have an amazing group and you all know who you are!

Oh! Today I went to the Dollar store (never been) but I got some huge deals! I went in for tape and came out with everything else. How come nobody ever told me about this store? WOW!

Thursday, November 22, 2007

I am Thankful for.......

Before I start this, I want to thank Andrea, for giving me the idea. I doubt I will write as well as she but I will give it a try.

I am Thankful for my family both immediate and extended. My children, who have taught me so much and a husband who has been so supportive since the first day I met him.

I am Thankful for my friends. The mom's I have met through Aden's school and the Heart mom's that I have known and have recently met. All, whom I cannot imagine a life without.

I am Thankful for Aden's amazing school, which I have been a part of, off and on, since Alexia was 6-years-old.

I finally, am most Thankful for Alexia's continued good health, the amazing Doctor's that are caring for her. Some of her Doc's as far back as 1986, when we first met them. Dr. Rick Mainwaring, who did her last surgery and gave us the best recovery we had ever had and a friendship that will last forever.

I am Thankful for everything........

Don't forget the contest. I have a heart friend, Amber, who has been my side kick in helping me start the CHD support group and she had an idea for the Hope entries for the contest I am having. Please post your entry soon so we can see what she had in mind! See below.

Tell me about a certain person's words of encouragement that helped you through a trying time and you could win the Hope ornament below.

Wednesday, November 21, 2007

Happy Thanksgiving

I am looking for a pirate ship for my son for his Birthday which is on December 25th. I would prefer wooden but am open to other suggestions. He will be 7-years-old and is really into pirates. There is one by Plan toys, but that one is geared toward younger children. Please post any suggestions that you have.

Also, the contest. I have a heart friend, Amber, who has been my side kick in helping me start the CHD support group and she had an idea for the Hope entries for the contest I am having. Please post your entry soon so we can see what she had in mind! See below.

Tell me about a certain person's words of encouragement that helped you through a trying time and you could win the Hope ornament below.

I hope everyone has a Happy Thanksgiving tomorrow. We will be celebrating at home with my family and Carl and I will be cooking.

Monday, November 19, 2007


My darling daughter continues to excel in school. She is almost done with her AA and will transfer schools to work on her BA. Her thought is still to become a lawyer although she has developed a love for Psychology as well. She and I are buds, enjoying each others company very much.

When she was about 4 and we were looking forward to her "repair", I never planned anything for the future for fear of jinxing it. Belive me, when I say, we had many scares! She was so sick many times. During hospitalizations, coded many, many times. Doctors would advise me to just "let go", please sign this form for a no-code etc etc. But, I knew I was taking her home! What would have happened had I listened? I did have some supportive professionals. I remember one Doctor in particular who said "You always have Hope". "When you let go of that, you have given up". I cling to that to this day.

Tell me about a certain person's words of encouragement that helped you through a trying time and you could win the Hope ornament below.

Sunday, November 18, 2007

Cod Liver Oil

Everyone needs Omega fatty acids—especially young, developing minds! Nordic Naturals Omega-3.6.9 Junior provides a full spectrum of Omega fatty acids necessary for brain and eye development and maintenance, as well as mood, focus, learning ability, and overall well-being.* Taste-tested by kids and teens, these lemon-flavored chewable capsules are perfect for ages five through teens.

Ingredients: purified deep sea fish oil (from anchovies and sardines), soft gel capsule (gelatin, water, glycerin, natural lemon oil), borage oil, natural lemon oil, d-alpha tocopherol, rosemary extract

As most of yo know my son goes to a non-traditional school called Camellia Waldorf. Alexia went to this school as well and continues to love school, learning and excels at this! It is a private school in the Land Park area of Sacramento that focuses on:

Provides a developmentally appropriate curriculum
Encourages appreciation for the natural world and all cultures
Integrates the arts with academics
Instills a sense of responsibility, respect, and love for learning

When I found out that most of the parents give their children "fish oil" as a supplemental "vitamin" and our doctor suggested that he take it, I was reluctant but willing to try. About a month ago, I too started giving this strawberry flavored capsule to Aden (without a fight) and what a difference in everything he does! The change did not happen untill a few days ago (they say it takes a month) but I will continue this daily routine for many years.

Friday, November 16, 2007

We Have a Winner!!

Thankyou to everyone who submitted a "Why my Christmas Tree is Special), I received many entries (some just emailed to me and not posted). The Gal who won, well, her writing has stolen my heart many times and this was no exception. She also has 3 children who can each receive a ornament from the Crate and Barrel trio and I have a feeling I know who will get the heart shaped one. Thanks Dina, for capturing the "Heart" of Christmas!

Check out the new recipe to the right!

Wednesday, November 14, 2007


Little things make me happy. So when a friend of mine has on the most incredible shade of lipstick I have ever seen, I am all over it. Turns out, it is Cliniques, Different Lipstick in Surprise. Perfect for dark haired (natural or not) fair skin women (or men I guess). I am a Mac wearer by nature, any form of makeup I own is Mac but I couldn't resist this! For $14 and a sweet smile by the Nordstrom Clinique lady, I walked out a happy camper and even bought some to stuff in Alexia's stocking. Don't forget the contest, which ends this evening at Midnight. See post below.

Sunday, November 11, 2007

Every six months..........

Photo Sharing and Video Hosting at Photobucket
November and May are high stress times in my life. That is when Alexia has her twice yearly appointment with her Cardiologist. On the surface I know that she is doing fantastic but deep down I can't help but wonder if I am missing something, she did go to bed at 10:00PM the other night, that must mean something, her INR was .1 lower than it usually is or she didn't have seconds at dinner last night. Ridiculous, I know.

On another note, Joao (from Ecuador) had his OH surgery to repair his large VSD on Thursday and will be getting discharged tomorrow. 22-years ago that would have guaranteed a 10 day stay, at least. We have come a long way baby. To read about this amazing boy go to:


Several months back I had a contest on why you needed a CHD hat and a delightful writer responded (so did many) but Jenni had won. I sent her hat and Target gift card and it was returned to me last week, the box was in tatters and they couldn't recognize the address. Since my computer crashed and I lost her address and hope she can respond to this, so I can re-send the package. If anyone knows how to get a hold of Jenni from the Three Jones please let me know.

New Contest: What makes your Christmas tree so special. You can win a set of three mother of pearl ornaments, including a heart, star and tree from Crate and Barrel. Contest ends Wednesday, 11/14.

Thursday, November 1, 2007


Halloween party for the first grade!

Tuesday, October 30, 2007

Finger Knitting!

Aden has now mastered finger knitting. Where he goes to school, they have a "subject" called Hand Work, and they are learning how to finger knit which prepares them for knitting with needles. He will now move on to making his needles and then will start knitting.

Saturday, October 27, 2007

The Protected Path

Aden's school does the most wonderful thing the Saturday before Halloween. It is called the Protected Path and there are 2 routes you can take, one for 5 and under and one for 6 and older. There are stations along "the luminated path" with skits acted out (fairytales etc). Alexia and I were on the younger path and we were Tree Fairies. We sang Twinkle Twinkle Little Star (did you know there are acutally 3 parts to that song):

twinkle twinkle little star
how I wonder what you are
up above the world so high
like a diamond in the sky
twinkle twinkle little star
how I wonder what you are
are you an angels twinkling eye
are you a gateway in the sky
so you guide me near and far twinkle twinkle little star
stars in apples seed pods pears
stars in berries every where
so you guard me near and far twinkle twinkle little star

That was a feat to learn in 2 days! At the end we gave out shink red "magical" apples, the children were mesmorized! The night was so entirely magical.

The First picture is of my wizard Aden and his friend Juliette the Queen!

Wednesday, October 24, 2007

Pumpkin Patch

Today some of Aden's friends and me (and my friends) all went to the pumpkin patch after school. We took a train ride around the patch and climbed a hay bale pyramid. It was quite warm out but had a great time! My "farmer" son found a persimmon tree and the group found a pomegranate tree and we spent lots of time picking and eating.

Sunday, October 7, 2007

Lego's, the cost and the guns!

Being the pacifist that I am, I vowed I would never buy my children anything with guns. So about 5 months ago Aden received a basic lego set that he has been playing happily with since. He decided that he wanted to spend some of his money (holiday's last year) and could I please take him to Toys R Us to get some more Lego stuff. OK, first of all I don't like Toys R Us and second I couldn't believe how much they charge for these Lego sets!!! Aden bought two small sets, Star Wars (yes, the SW's has guns in it) and Castle, to the tune of $36.00! Yikes!! But, as far as the gun thing goes, I figure it is part of him and his desire to "play" with toy guns and he will make them out of whatever he can anyways, he has shaped his toast into one before. I figure if I let him play with them, maybe he will get tired of them eventually. Oh well, he is happily playing as we speak. Any other moms have any thoughts on gun play?

Wednesday, October 3, 2007

Good Stuff

Life has been so good! I recently helped organize a Parent Evening called: An Evening With Your Child's Heart Team. The photo below is of me and about 1/3 of the other mom's that showed up. We had about 100 people come. There was a panel of experts from Child Life, PC, Peds Anesthesiologist, Peds Intensivist to the PCV Surgeon. We rolled in a heart lung machine and the perfusionist was there to demonstrate! We had the Child Life therapy dog, Greta, giveaways, dinner etc. It was wonderful. We had about 5 adults with CHD throughout the audience and they had a lot to offer. One mom wrote to me and said: "I left the Hilton feeling emotional, enlightened, supported, and hopeful!"

Tuesday, September 11, 2007


So my son has befriended a praying mantis and he found him again after school today under a leaf. "But", says Aden, "there is another under him" and I say, "Well, the boy and girl are mating and are making eggs that will hatch into baby, praying mantisis". About 15 minutes goes by and Aden comes back in and says "So when a boy and girl praying mantis are on top of each other, that means they are marinating, right?".

Out of the mouth of babes!!!

Wednesday, September 5, 2007

First day of First grade at Camellia waldorf School

Today was the big day! The first day of first grade! We have 12 children in the new first grade and had a lovely ceremony this morning with the new first graders being announced and joining the 8th graders on the stage. The 8th graders gave each first grader a white rose. Aden was excited and not nervous at all! I am anxious to hear how his first day went.

Saturday, September 1, 2007

Holy Cow, what is that!!

Woke up this morning and voiloa, there it was!

What do you all think??

Wednesday, August 22, 2007

The Bay Area, a little piece of heaven 90 minutes away

Yesterday, Alexia, Aden and myself had a Grandma day. We drove to the Bay Area and spent most of our time at The Exploritorium. I have not been there for probably 15 years, it was awesome!! It really is an amazing place for kids (and adults!). After, we went Pier 39 for shopping and dinner. We had a lovely day!

Monday, August 20, 2007

Prayer request

I don't do a lot of prayer requests but am going to post this on my Blog because this family is as good as gold. The family and Baby Sean have been through so much and Sean has only been home for a couple days out of his whole life.

Please post a special thought on their CarePage, CP name: sweetbabysean They really could use the boost. You can also post something on this Blog, and I will let them know to come peek at at any comments.

Sunday, August 19, 2007

The 3rd Tooth and check out the new recipe to your right!

Also, I need to add that I have been meeting some incredible heart mom's via the internet. I really wish this was a resource when I first had Alexia, I just can't believe how easy it is. Not only that, but there are hundreds of heart moms out there who are just amazing and are so helpful in the projects I am doing. I just need to name some by first name only, I couldn't imagine a life without them!

Awesome Mom
Valerie (not me!)
and Emily

Just to name a few!!

Thursday, August 16, 2007

Food, Books and the Traveling Quilt

Last night was our Book Club. There are 12 women in the group and we rotate homes every month, so each only hosts once a year. We chatted about a book called Keeping The House by Ellen Baker last night, good read. The SAH mom's of the 50's were much different the the ones now. Could you imagine, 12 different aprons to match your dress/pumps that you wore throughout the day. My favorite part of the way we do our discussion groups is we bring food straight out of the book. Last night the theme was "comfort food" and we had a variety of dishes. The hostess last night made a bacon wrapped shrimp over risotto with a chipitole/cream sauce, it was so delicious it made me weep! She made it seem so easy, risotto takes alot of patience, and I have never succeeded in making it. This makes me think of 10 things that you can always find in my kitchen; you will notice risotto is not among the list.

1. Coffee Beans,San Francisco Bay French Roast (Costco)
2. Honey Bumpers Cereal,my son cannot live without them (Whole Foods)
3. Hemp Plus Granola, my husband cannot live without, it does not make for a positive urine test (Whole foods)
4. 5 pound bag of frozen strawberries, smoothies, Costco
5. Nancy's 64 oz, plain yogurt, smoothies, the Co-op
6. Dino Tots, they help in a pinch with a hungry 6-year-old boy (Raleys)
7. Chocolate chip granola bars same as above (Raleys)
8. Arizona Ice Tea to keep me going throughout the day
9. Peanut butter, honey and bread for my daughter who could live off it
And finally.... 10. Bananas we go through a bunch a day, breakfast and/or smoothies

We have put in a request to have the CHD Quilt be at our Symposium on the 28th of September. I never realized how beautiful they are, check them out when you have a chance.

Monday, August 13, 2007

Last year's vacation

I just wanted to post a couple pictures of last year's trip to Trinidad, California. It is the most beautiful place in California ( I believe).

We are currently getting ready for back to school. Lexi goes back the 27th of this month, she is taking 19 units! And Aden goes back on the 5th of September. Aden goes to an incredible Waldorf school. He will be entering first grade and we are fortunate to have an amazing teacher for those 8 years of school (they keep the same one from first to eighth grade). Lex went to this same school and developed a love for writing, this was encouraged by her teacher. Aden has devloped a love for painting and anything to do with the outdoors! If you have a minute post a comment about your children's school and when it starts. I love to hear about these things!

Sunday, August 12, 2007

Winner Announced!

I got to say I enjoyed reading all of the entries but Jenni's was quite funny. She is the winner of this contest, congratulations!! Stay tuned for more contests to help spread the word of Congenital Heart Defects!

Check out Jenni's blog below:

Thursday, August 9, 2007

Only a couple more days

There is only a couple more days to tell me why you need that great CHD hat. Put it into today's post or the one where I am standing next to the amazing Dr. Mainwaring. Tell me in your most creative way why the hat would be perfect for you. To see a pic of this wonderful hat scroll down on the right side and eventually it will appear.

Just added: a $50 gift card to Target! Good Luck!!

Below, a cute pic of my 2 wonderful children.

Wednesday, August 8, 2007


Six Months ago Alexia and I started working out (toning and stuff) at our neighborhood gym, 1,2,3 Fit. She is to steer away from aerobics but toning is so good for her. I really think they should include cardiac rehab for all older children, teens and adults who have a congenital heart defect. The picture
is of Lexi and her WONDERFUL personal trainer, Art.

PS: Don't forget to enter the CHD cap contest below the picture of me and my favorite surgeon, just offer your comment in that section.

Tuesday, August 7, 2007

Support Group

When Alexia was young and I mean 15 years ago, I belonged to the BEST CHD support group. We lasted about 10 years and then fizzled as the children had their repairs and started growing up, parents did not need the group any longer (that is the natural progression of things). I still feel the need to connect with other heart families and offer my support to "new" families starting their journey. We finally are on the roll for a new support group in the Sacramento area. It is held the last Thursday of every month at Sutter Memorial Hospital, with refreshments, speakers etc. If anyone, who checks this Blog is local feel free to inquire and stop by for a visit and meet others who are sharing your experiences.

PS: Don't forget to enter the CHD cap contest below the picture of me and my favorite surgeon, just offer your comment in that section.

Sunday, August 5, 2007

Things are never what they seem.........

As I ended the 33rd chapter of the Deathly Hallows last night, all I can say is WOW, I was not expecting that one. For those of you who have not started or finished it, I will not go into detail. I will savor every last page knowing that I have no more books to look forward to but I will not tell my daughter that a book series got me majorly hooked. I will no doubt finish it tonight and will be left heartbroken for no more books to fill my need. Yes Alexia, all this time I adored Severus!

My daughter, Alexia, now has a Blog, solely devoted to Harry Potter. Check it out!

Saturday, August 4, 2007

What is the difference

Every Spring Aden plants a few things throughout our backyard. We do not have a full fledged garden by any means but we are able to get Thyme, Basil, Cilantro, Strawberries and pumpkins. This year we planted pumpkin seeds and we are a little confused as the leaves are different from one plant to the next (this has never happened). I took pictures because I want a gardners suggestion as to why this happens. Some of the leaves have a silvery pattern on them and the others are just plain green. We counted this morning and so far have 15 pumpkins (or what looks like pumpkins). The glare is the morning sunshine. Have a wonderful weekend!

PS: Don't forget to enter the comment contest for the CHD cap below. So far there is only one entry...I am a little sad about that.

Pumpkins...I think??

Thursday, August 2, 2007

Wednesday, August 1, 2007



My desire to learn to knit is huge, I just need to get my husband's Aunt out here to teach me, she lives in BC and I, in Northern California, pretty expenisve class if you ask me. If I wait a couple more years my 6 year old son, Aden could probably teach me, as knitting is part of their curriculum in his school, they start in First grade. My last desire was to learn how to cook, it happened and was relatively inexpenisve, a annual payment of $40 to Fine Cooking magazine.

Lot's going on in the CHD world for me now. We are starting a Support Group at the hospital for families of children with Congenital Heart Disease, I am the Chairperson for the Family Advisory Council at this same hospital (we focus on making sure the hospital has Family Centered Care) and I may be helping to take over a local Children's Heart, Non Profit. Am also working on our Children's Heart Surgery Parent Evening Symposium which is at the end of September.

Oh!! I did get 4 hours to myself yesterday thanks to a dear friend. Guess what I did, got my oil changed and oh yes, a 60 minute facial, ahhhhhhhhhhhhhh

Below, pic's I have taken........

Sunday, July 29, 2007

My life is ruled by a "click".......

When Alexia chose her St. Jude Mechanical valve because of it's life expectancy, she didn't tell me that the thing would "click" for every heart beat. I can take her heart rate from across the room and behind closed doors in the peace of the night. I can tell every premature beat, extra beat and too fast heart rate. When we go to the gym, I can hear the thing over the music (ok I am exaggerating)but it wouldn't surprise me. The Doc's said I would get used to it...when?????...please tell me. But the big question is.... when will I stop worrying that it will stop "clicking"??

Thursday, July 26, 2007

What I learned yesterday.........

The amazing Dr. Mainwaring, PA Dinice and me (in the middle) I love these two people!

I now know Child/Adult CPR. My husband, Carl, who is a PICU RN, purchased a home/mannequin CPR kit and I learned the technique in 30 minutes. It was pretty amazing that I never had learned it since I have a child/adult with a congenital heart defect. I couldn't believe how easy it was! As a celebration of learning a new skill........

........I was doing some research for "giveaway" items at our Parent Evening CHD Symposium and ran across a baseball hat that I personally cannot live without.So, I ordered one for myself (see right picture) and decided to order another as a giveaway on this blog. I will be giving it away on August 11th. How you can receive this amazing hat, you might in the comment area of this Blog by midnight August 10th, your most creative reason you absolutely cannot live without a hat displaying a CHD logo (I love reading interesting writing) and I will let everyone know who won on Saturday, August 12th morning.

Can't wait to read all of the entries (at least I hope there are a bunch).

Tuesday, July 24, 2007

More Harry Potter and the Phenomenal Ms. Helen

The picture you see to your right is Aden and Ms. Helen, the world's best swim teacher. Her last day with Aden is Thursday because she is off to NYU. At the beginning of the summer Aden could hardly put his face in the water and is now swimming amazingly well. She has been a godsend and will be missed greatly. Aden will move on to an equally talented instructor, Issac, who is for the more advanced swimmers, I am sure this experience will be equally as good.

So, Alexia got her final Harry Potter book at 12:01AM Saturday and had it finished by 10:00 Saturday morning. I am on a whopping 7th chapter. The Bee contacted her yesterday (heard she had finished the book) and interviewed her about spoilers and plot points, to read this interview go to:

I am working on our An Evening with Your Child's Heart Team on the 28th of September. It is a panelled discussion on congenital heart defects with a sit down dinner here in Sacramento. This year we are rolling in a Heart Lung machine and will have a Perfusionist explaining this mysterious piece of equipment. If anyone would like a inviation please email me directly:

Saturday, July 21, 2007

Birthdays, Book Club and Harry Potter!

This week was a busy one. We continue to do our every day routine of summer school (Lexi), gymnastics and swimming (Aden) but throw into the mix, my Aunt from Pittsburgh Pa and my in-laws from Phoenix, here to celebrate my mom's birthday! There was a lot of celebrating, eating and just having a great time! Everyone left yesterday and now we will get back to "normal". Everyone was so enchanted by this lovely Sacramento weather, they didn't want to leave.

On Thursday Alexia did a 7 minute speech (Communications class) on CHD and the most common defects. Most of her help came from Dr. Rick Mainwaring and a book called "It's My Heart". She is glad to have that over with. Of course, she left early last night to get her copy of the final Harry Potter book at Midnight and stayed at a friends house, no doubt stayed up all night reading it.

I belong to a Book Club with a amazing group of women ranging from 21years to 70+ years, from college student to Physician. We read Joan Dideon's The Year of Magical Thinking and are now on to Keeping The House by Ellen Baker. This one of my favorite things to do every month ecause I enjoy everyone of these ladies, each one brings something different to group.

Thursday, July 12, 2007

Two years ago

Yesterday, two years ago was Alexia's 5th open heart surgery. She needed a aortic valve replacement and she needed it soon. After meeting with her surgeon he gave her two options, another tissue valve, which would last 7 years or she could go the St. Jude Mechanical Valve, which has a life of 25-30 years, she would have to be on Coumadin, a powerful blood thinner which requires monthly blood draws. This was a small price to pay for not having to have another surgery in 7 years. Ironically, at that time the buzz that was happening was the release of the 6th Harry Potter book. JK Rowling sent Alexia a autographed copy and she read it 24 hours after surgery, she finshed it well before discharge 6 days later. Last night Alexia and I celebrated her 2 year anniversary with her St. Jude valve at opening night of the 5th Harry Potter movie (excellent!) and had mexican food before that. She and I are best friends and have alot of good times together, who knew??

This morning, as I write this, a friend's little girl Marin is having her 2nd open heart surgery in her short life. She is having surgery at Sutter Memorial Hospital by Dr. Mainwaring. If you would like to send her a note of encouragement her Carepage is: babymarin. She is such a cutie pie and sweet natured little girl, her family is awesome!

Saturday, July 7, 2007

If Not For Alexia.........

I often think about who I was before I had a child with a congenital heart defect, you wouldn't have wanted to know that person. Twenty two plus-years-ago I was a self absorbed, self destructive person who didn't give a rip about anyone besides herself. After I had Alexia, I made a complete turn around, I still had some selfish moments but they didn't last long. I started volunteering for the Make A Wish Foundation of Sacramento,, and eventually became Program Director. During one of Alexia's scariest hospitalizations, about 10 years ago, I met my now husband Carl who was the Charge Nurse in the PICU where Alexia spent 6 + weeks, which resulted in our wonderful, 6-year-old son, Aden. I am fortunate to be able to stay home with my family and volunteer for what I enjoy most,The Pediatric Heart Surgery Program at Sutter Memorial Hospital. I am also the Chairperson for the Family Advisory Council and offer alot of help at Aden's school Camellia Waldorf, Class Parent. I am now working on our upcoming Pediatric Heart Surgery Parent Evening Symposium, geared for September 28th. This is an educational event, with dinner, dessert etc. This year we will talk about many things including what can be done via heart catheterization in lieu of open heart surgery. We will have an entire team of physicians, nurses and child life specialists and the role they play in your child's care before during and after open heart surgery. I thrive on these types of things, of helping others...what a difference from pre-twenty plus-years-ago.

Friday, July 6, 2007

Greetings to all!

This blog is being developed to keep you updated on our family. I will update you on Carl's art, Lexi's journey in the Pre-Law and CHD world, Aden's swimming, gymnastics and his amazing school and any volunteer work I am doing for the Pediatric Heart Surgery Program at Sutter Memorial Hospital. Please bear with me as I continue to learn how to use Blogger.