Jillian's Journey

As the Awareness Comes

2012-01-14T22:20:00.000-08:00

Cuddling in bed watching Dolphin Tale.

In movie little girl comes to see the dolphin with no tail. She has no leg.

Jilly asks why she doesn't have a leg.

I explain that maybe she was born without one.

She says...like me.

How like you?

I was born with a broken heart. She was born without a leg. Kind of the same.

Kind of.

Movie continues. Dr. Clay tells kids that if Winter (the dolphin) continues swimming the way she is without a tail she will die.

Jilly contemplates this.

Mom?

Yes?

So I was born with a broken heart?

Yes.

Is it fixed?

Too much and too young to try and be honest and explain. So a yes, sort of, can suffice. Only one of us needs that anxiety and worry.

Quiet contemplation continues.

I wonder what her little mind is thinking. But afraid to ask.

Man, this is hard sometimes.

Made harder by the fact that of late there seems to be too many heart kiddos dying.

Thankful Bounty

2011-11-24T08:14:00.001-08:00

I am a lucky girl. Today and everyday I am grateful and thankful for so many things. My cup runneth over.

I am thankful for doctors, surgeons and hospitals.

But I am thankful we have gone from this:

To this:

From this:

To this:

From this:

To this:

And I am so very thankful for such beautiful, intelligent, thoughtful and fabulously cool kids:

And for one awesome and good looking husband

Smarty Pants

2011-11-09T19:38:00.001-08:00

I have to say that the Matt Nathanson song you may be listening to right now as you read my blog just makes me smile. And tap my foot. And get up and dance around my kitchen.

Jilly got her report card last week. Straight A's. Even a few A+ grades.

I remember a time not too long ago that in 2nd grade you just got an S or something like that. Cookies at snack. Tetherball at recess. Are you reading at grade level? Great. Being a good neighbor? Fantastic.

Now? Higher stakes. These little 2nd graders get real grades.

And Jilly is a smarty pants. Reading at a 4th grade level. One of the top students in math. Highest fluency rate (means she can read pretty darn fast).

This is such a huge thing for me. Well, I mean obviously I am happy that she is smart and doing well in school. But it's huge because of what I thought we were facing when it came to learning for Jilly.

Those first few years we heard many, many, many times to be prepared for learning difficulties. Because she had been on bypass three times, which means a lack of blood flow to the brain, the statistics told us she would have learning issues. Because she lived the first three months of her life on oxygen and very low oxygen levels in her blood because of her failing heart statistics told us she would have learning issues and possibly cerebral palsy. Because she lived the first three years of her life with low oxygen levels statistics told us to be prepared for learning disabilities.

Those first three years I had plenty of doctors and nurses try to prepare me for a lifetime of difficulties.

Can I just thumb my nose at all of those statistics? Yes, I think I can. Because this here girl is one smart cookie.

The medical community and statistics also tried to prepare me that we would also face a child with ADD or ADHD - some correlation to do with bypass surgery and low oxygen levels. Happy to say that is not an issue. And from experience I know what a 7 year old with ADHD looks like and it isn't Jilly.

It is just one less worry to check off of my worry list.

I just love that this girl loves to learn. She is like a sponge and just soaks everything up.

And of course it warms my heart that she shares a love of reading with me. Gets the same goofy grin when we walk into a library. Gets so excited when she finds a new book that she didn't see the last time we were there. Checks out like way too many books and then lays on the couch for a solid three hours just lost in her book.

Love me some smarty pants.

Something the Lord Made

2011-10-19T15:14:00.000-07:00

I know most of you heart moms out there have seen this movie....if you haven't, you should.

But so should all of you others out there whether or not you have been personally affected by Congenital Heart Disease. This movie is just awesome.

I have watched it many times. It is recorded on our DVR. Last night I was in bed, sick. Nothing good on tv (damn you, Glee). So I watched it again. And cried as I always do when they are operating on the blue baby.

I am so thankful for Dr. Blaylock, Dr. Tausig and Vivien Thomas. That they had the courage to forge ahead on operating on blue babies when everyone else thought they were crazy. It is a direct result of their research, expirements and passion to help that my Jillian is alive today. Actually, one set of her multiple defects is called Tausig-Bing Anamoly - named after Dr. Tausig.

Even though time has passed there are days that I am just overcome with the amazement of medical technology and what it has given me.

And little Ms. Jillian is probably one of the sweetest little girls I think I have the pleasure of knowing.

I was telling her about a little boy whose mom I know who just had his first open-heart surgery. He's a little bit younger than her. When I told her that he had his surgery and was home now she said "We should go visit him so I can meet him. He has a zipper like me now. It's nice to meet somebody else with a zipper. He might not feel so alone."

That kid is awesome.

Another word for Poop

2011-10-07T13:34:00.000-07:00

To start off I would like to give you a recent funny:

Me: Jillian, that blister on your toe looks much better.
J: yes, it does - but don't touch it.
Me: ok let me just pull that dead skin off
J: NO! Don't touch my blister or you'll make it defecate!
Me: I'll make it what?
J: You'll make it defecate - that's what you said would happen if I picked at it so leave it alone or you'll make it defecate!
Me: laughing hysterically.....
J: What's so funny - you said so.
Me: I said it would "infect" it - like it would get an infection. Defecate is another word for pooping
J: laughs hysterically.....

So things are well with Jillian. I did not update after her appointment. My apologies. She did not get an echo - she just had an EKG and all her vitals. Oxygen level is good. Dr. R says everything looks good. Does detect a murmur in both groin arteries now. He said there is no intervention that can be done to open those arteries up at this point, she's too young. But he said exercising her legs to the point of pain will help open them up and increase blood flow to her legs. Yeah. Right. Just go ahead and try that with a 7 year old. But she's staying active so that helps.

He didn't break up with me though. He said he'll see us again in 6 months. So I'm thinking he either

1. forgot that he was considering only seeing her once per year
2. figured that she was so darn cute he couldn't go for a whole year without seeing her
3. he heard that I'm a freak and would pass out in his office if he told me I had to go a whole year without seeing him.

**I'm going with option #2**

School is going well. She brought a progress report home and has all A grades. She is reading like an addict. We check out about 18 books at the library - big chapter books. And she finishes them in about 1 or 2 days. She LOVES to read. And she is now into legos. The older girls didn't do the lego thing so it's new to me. And she wants new kits every day. Those things are expensive. So she is saving up some money to buy more. She spent the whole day on Saturday at the table putting together these intricate lego kits. Amazing.

Karate is good. Her instructor is so good with her. They do know about her heart condition so I think that makes the instructor take a softer stance with her. I almost fall apart whenever he works one on one with her because he gets on eye level with her and just is very tender with her but makes her work hard. If you ever want to get your kids into karate Kovar's is awesome and specificaly the one on Waterman in Elk Grove!!

Speech is still an issue. From what I hear from her she is going to speech at her school. She is still on the waiting list at Sac State (they left me a message yesterday saying maybe they could get to her 2nd semester). And yet again I had somebody ask me the other day if she was from Russia. So yes, I bristle when somebody tries to convince me that she doesn't have a speech issue.

And can I say tall? Yes. I can. Poor baby had to go to school today in dirty jeans. Did I just admit that. Ok, they were not dirty she just had worn them earlier in the week. The reason? I did not anticipate the huge growth spurt she has had the past couple of months. And the closetfull of pants/jeans she has in her closet? None, I mean NONE, of them fit. They are all about 4 inches too short!

Hey honey? We are going shopping today.

She is doing absolutely fantabulous and everyday I am so thankful for that little girl.

Fierce

2011-09-21T21:01:00.000-07:00

It's that time again.

Tomorrow is Jilly's 6 month cardiology appointment. This is the "Dr. took pity on me" appointment when Dr. R. tried to break up with me 6 months ago and to my horror tried to suggest that we only see each other once a year. The man was obviously smoking something that day.

I have to say that after 7 years with this little miracle of a daughter I think I am finally hitting my stride as the the mom of said miracle daughter. I am afraid to voice that out loud for fear of jinxing myself the night before her appointment but I guess I'm feeling less superstitious. I'm hitting my stride, I realized, because I'm not as anxious as I have been before these appointments. I'm not doing my usual perseverating on all the what-ifs. To be honest I almost forgot that the appointment was tomorrow. I know, I know....who am I and what happened to Dina, super-uber anxious momma?

Don't know. Don't care to over-analyze it. Just accepting if for what it is right now.

But I do have to say that the calm that I feel in regards to Jillian right now is something that I have felt at times over the past 7 years at various times. The calm I must feel to take action, to not curl in a ball and give in to the fear, to march onward into the great unknown.

It's the calm I feel when I know that I have to be the adult in this relationship.

Is calm the right word? Maybe a resolve that this is my lot in life, a fear that requires bravery, momma bear is in the house and feeling fierce?

I was thinking of this the other night at my book club. The ladies and I were talking about how some people fear the hospital to the point of fainting. How some families will avoid the hospital like the plague. I was telling the story of how when Haley was about 5 she fell on a glass jar and cut her palm wide open. When I was at the hospital with her and they removed the bandage to clean the wound and stitch it the doctor took one look at me and said "m'am, you may want to put your head between your knees." I did as I was told because I knew if I tried to stay upright one more minute I was going to pass out.

When the older girls were younger I used to fret about everything when it came to them. I never felt overly confident in my abilities to advocate for them, to make sure they were receiving whatever care it was that I felt they needed - from a fever to stitches.

Then Jilly came along. And I was telling the ladies in my book club that even if you are that person that faints at the site of a hospital corridor - when you are faced with a life and death situation with your child all of that falls away. I think your mind checks out at that time and a survival mode kicks in. At least that is what I think.

I know that I went from an insecure mom who almost fainted at a little cut on my child's hand to a fierce and protective mother. A mother who saw her daughter's heart beating inside her chest because her little chest was left open for seven days after her first surgery and didn't blink an eye. A mother who watched her 1 month old baby go through severe drug withdrawal and couldn't hold her baby to comfort her but confidently held her hand and yelled at doctors and barked orders at nurses, as if I even knew what I was talking about. There was no passing out going on then.

Where did that woman come from? I'm not sure but I know as I was laying down next to her tonight, as I do every night, watching her fall into a sound sleep.....there was that calm resolve. The resolve that tomorrow I will stand next to her and hold her hand as I always do during her echo. The resolve that I will help pull off all of the super sticky EKG wires with her help. The resolve I feel when watching the pulseoximeter machine measure her oxygen levels (and making a silent wish that they are in the mid 90s). And the resolve I feel when her doctor comes in to tell me what he saw in the echo, the EKG and other readings. That resolve I feel that I must remain calm for my Jilly so that she learns to become that super-confident, strong advocate for herself, navigating through this CHD maze that will be her fight to fight as she gets older. Set those wheels in motion, be a good model for her while inside of course I beat down all the what-ifs and worries that try and escape.

I'm not passing out.

Although if Dr. R tries to break up with me again tomorrow I just might.

Never Grow Up

2011-08-22T18:57:00.000-07:00

First week of school is down. Jillian is loving second grade. Haley is loving being a sophomore.

Mikayla is moving away.

She leaves for college this week.

And mom is having a hard time with it.

I'm in a wierd place as I watch my three girls navigate this time in their life.

It's interesting, the parallels even though each one of them is at a different stage in their life.

I watched Jillian walk away from my car in my rearview mirror this morning as I dropped her off at school. And that little tear rolled down my cheek.

I watch as she navigates her independence. I watch as she stretches those little wings, trying out her ability to make little flights away from mom, knowing she will circle back around to me when the world gets too big or too scary. And come back to me she always does, tucking herself under my protective wing. Right where she belongs.

My middle daughter is much more adventurous. Craves independence. Flaps those wings as hard and as furious as she can. And I have to clip them often for fear of her flying too close to the sun. Her not always knowing when she's too close until she is burned. And only comes back reluctantly for a place to rest. And off she goes again to find adventure.

And my oldest. There is something about that first baby. Watching her navigate her world cautiously. She's always been my thinker. My rule follower. I marvel at this time in her life. I watch proudly as she stretches those wings. But smile as she quickly pulls them back in and hovers next to me, afraid to leave for too long or go too far. She's nervous, excited, anxious, scared. I'm right there with her.

It's going to be so hard to watch her go. So hard to not see her everyday. So hard to not lay next to her in her bed and talk about her day, her dreams, her goals, her hurts, her successes.

I hope she soars though. I want her to spread those wings as far as she can and fly as close to the sun as she can without getting burned. I know she will always fly back to me. There is a connection that her and I share that no amount of distance will weaken.

As she takes off on her adventure I stay here to watch the other two continue to grow. It makes me proud and happy to see the people they are becoming.

But more often than not it just makes me sad that time goes by so fast.

(make sure you turn off the music over on the side to hear this)

Upcoming

2011-08-06T18:55:00.000-07:00

First it was my husband. Now my friend.

".....you haven't posted anything on your blog for a very long time"

"....I forget that there are people out there who still read my musings."

"I don't even bother checking it every day now because I just set myself up for disappointment. Don't feel guilty though."

"....I"m so totally writing that in my post somewhere."

Who knew it would be my opener?

But I do forget that there are people out there who are geniuely interested in Jillian and how she is doing.

Which brings me to the post I've been thinking about in my head for some time now.

School is starting in a week. Second grade? Can you believe it? I can't.

With the start of each new school year, which represents yet another milestone I thought I would never see, comes some sadness and anxiety but also hope and optimism.

Another heart mom posted something on facebook that touched on what I feel almost every night, every day, especially as I once again entrust the care of my child to another for 6 hours a day, 5 days a week.

She said "parents of heart kids, please make me feel normal...when I'm up late and can't sleep, I fight the urge to go into his room, lay next to him, and beg God to let me keep him. Normal?? Or nuts" (thanks Gina and hi, how you doin'?)

Completely, 100% normal. Something that I hate to admit I do almost every night since I usually lay with Jillian until she falls asleep. Just because. Because I want to be as close to her as I can. To smell her little people smell. To hear her funny stories. To listen to Justin Bieber songs with her. To smile as her body starts twitching as she falls asleep. To watch her chest rise and fall. To see the little pulse in her neck. To rest my hand on her chest and feel the wooshing and beating of her re-plumbed heart. And hoping, beyond hope, that that little heart continues to beat strong.

I've been with her all summer. She hasn't really been away from my side for very long. She's my wing-man, cause you know, those other two kids I have, the teen-agers? They are pretty much done with me for now. She accompanies me on all my outings, to the gym, to the lake. Hours spent in her room playing Barbies. Reading. Puzzles.

So letting her go in a week for somebody else to entertain her and watch over is anxiety-provoking. Luckily she is with the teacher I was hoping she would get. This teacher had my Haley and is awesome. And she has her little guy friend in her class. The one who has taken it on as his duty to watch over her and her special heart. Provides a little bit of relief.

But with second grade comes some fights I am going to have to take on. The speech issue is front and center. I am a little tired of people asking me if she is from Russia. I will talk more about this issue and where I've been with it and where I am going in another post as I think it's good for those of you who might be fighting and uphill battle with schools to get your kids the services they deserve. So yes, Jamie, be prepared for another post in the next couple of days.

The other fear is as she advances through elementary school she is trying to keep up with kids that are getting stronger and faster. She is not. Ok, I guess she is in her own little ways. But she still struggles with her gross motor skills and is still not entirely comfortable running with the big dogs.

I realize slowly but surely this issue will be falling soley on Jillian. I'm not there at recess. She's going to have to figure out how to adapt.

And she will. She's a fighter. She's brave. She's my hero.

So Higher Being? If you are listening. I too, would like you to let me keep Jillian a little while longer. Thank you.

Another year

2011-07-14T21:44:00.000-07:00

Conversation between Jilly and I the other day:

Me: Jilly, you are absolutely awesome. How did you get to be so awesome?

Jilly: Ummm, you mom, duh. You made me awesome. Except for my broken heart. You didn't know about that.

So another year has passed, very uneventful I must say in regards to Jillian and her health. It's almost been a year since her catheter, stent and coils.

Another year behind us that has allowed her sphere to widen, her experiences to grow, her awareness of the world around her to grow.

My posts get fewer and farther between, as pointed out by my husband the other night. I thought about why I have fewer and fewer things to say. I think it is because the pain isn't as raw anymore. Oh, it's still there. But I guess I'm just not feeling as exposed with open wounds that I was trying to find some salve for. The wounds seem to have a scab on them - at times that scab comes off and I work hard to not pick at it and let it heal again.

And heal it does. Not completely. I don't think it will ever heal completely because there is always, always that awareness that the other shoe will drop. It could be tomorrow or 20 years from now, but that awareness that she is not healed is always there.

I do a pretty decent job of not obsessing on all the what ifs. Especially as time creeps by and she continues to do so well. But the occassional doubt drifts in. The times I look at her and am just completely blown away by the fact that she is sitting here with me. Wondering where her life is leading us.

I guess I don't have as much to say as the mom of a Fontan patient because there just isn't a lot to say. She's alive, she's doing well. She's growing, thriving, happy.

But maybe for those of you who are a few years behind us in terms of treatment, recovery, etc hearing that Jillian's life post Fontan is uneventful is comforting. I hope so.

I do know that as a mom of a child with a Fontan I feel as though I walk a slippery slope in learning how to help her, and myself, navigate life as a child with CHD. Especially as her awareness of how it affects her grows. As her awareness of how it might make her different from other kids grows. And helping her deal with her frustration in any of those limitations.

As a matter of fact we just had a conversation about her scar. She reminded me how during 1st grade she had a period of time that she became the recess side-show. I don't dress Jilly to hide her scar. I don't want her to be ashamed or embarrassed. It is a part of her and I want her to not be self conscious about it. So obviously, since her scar comes up so high it's easy to see. The kids would come up to her and ask her to show them her scar. She would oblige, because it made her the center of attention. One little girl in particular would clap her hands and say "again, again" so Jilly would pull her shirt down to expose her scar. Her bringing this up again allowed us to have a conversation on her feelings regarding her scar and the attention that it gets her, the stares, the looks of pity from people - ok, maybe that's my awareness more than hers. But she had some definite opinions now as a big 7 year old. We were able to discuss how her scar is hers and if people are curious that is ok, but she doesn't have to show them if she doesn't want to and she doesn't have to talk about it if she doesn't feel like it.

Her limitations are few at this point. The main concerns have been her speech and gross motor skill development. And then of course all the unknowns of what might be going on inside that little body of hers.

But it doesn't stop me from worrying. I feel that I am always two steps ahead thinking about how certain activities might need to be modified. How to communicate those modifications to others. Like in karate. She has moved up a belt. For now there is no contact. But of course I am already two steps ahead as I watch the kids just a few belts away from her are grappling on the mat, elbows being pushed into chests. Wondering how I will reign in my protective side and let her figure these things out on her own, communicate her own needs.

Or this week when I broke out the pulseoximeter machine to measure her oxygen because she's had a cough and has been winded. First time I have had it out since I can't remember when. Then got worried when she was only at 93. I immediately put that thing back in hiding. Causes to much anxiety.

Or when I know that she needs to exercise those legs because of the passive blood flow and the fact that because of so many procedures her artery in one leg is narrowed. Which restricts blood flow. Which in turn makes her legs tired. And the treatment for that is to make her exercise her legs and to be active. But she whines and complains that she is tiiiiireeeed and her legs are tiiiiireeeed and she doesn't want to dance, run, walk (she will when she wants to, just not always when I want her to). So I have to continually push her to be active or otherwise she would be content to become one with the couch and watch t.v. all day long.

Four years post-Fontan - life is good. Her doctor is easing me in to accepting that it is so good he only wants to see her once a year. My anxious side asks, "are you sure, is that a good idea, wonder if there is something serious going on in there?" But the rational side of me knows this is a very good thing. A sign of continued progress.

Just as a lack of things to say is a good sign. A sign that Jilly is doing fabulous and maybe I'm doing ok too.

And just as I told Jillian this morning when she woke up grumpy "every day that we wake up is a great day!"

And it is.

Hello World

2011-06-08T19:59:00.000-07:00

Hello there. It's been awhile. We are still here. It's been a whirlwind of a month. Let me give you a little breakdown:

Jillian started Karate and LOVES it!!!

She finished first grade with a bang and can't wait to start 2nd grade

We are all out of school now and starting the 3rd week of our summer vacation

Mikayla graduated :(

We took a weeks vacation and went to San Diego where the weather was gorgeous. And then we suprised Jillian on her birthday by taking her to Disneyland

And now we are recharging the batteries and gearing up for some summer fun.

Fragile

2011-04-27T19:37:00.000-07:00

Russ found this article online tonight. It made us both take pause and recognize how fragile these kids are and how things can change drastically in a blink of an eye. After I read it I looked outside and watched my six year old Jillian practicing her dribbling and shooting her basketball, pretending to be Troy from High School Musical. I appreciate every, single day I have with her.

6-year-old awaiting heart transplant dies

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By The Record

April 27, 2011 11:09 AM

STOCKTON – A 6-year-old’s courageous battle with a rare heart condition came to an end late Tuesday night, and today family members and friends are mourning the loss of Jacob Wells.

Jacob was born with hypoplastic left heart syndrome and underwent many surgeries in his young life. In early April, Jacob suffered a failed heart valve transplant, a setback that would put him on the list to receive a heart transplant

The first-grader’s friends and family took to Facebook late Tuesday and early Wednesday to remember him.

“I feel honored to have been Jacob’s teacher. I will never forget him,” his teacher at John Muir Elementary School Debra Roberts wrote.

Read Thursday’s Record for more on this story by staff writer Keith Reid.

Check Up

2011-04-13T21:23:00.000-07:00

Yeah, I know. Told you Jillian had a check up then failed to tell you anything about it. Suppose that means good news right?

Yes. Yes, it does. Her check up went well. Nothing interesting found on her echo. Although the tech took an extraordinary amount of time looking for her stent. Never did find it. Dr. R found it though. and said everything looks good. EKG looks good. Stats look good. Although I didn't like seeing 94 for her O2 stats but Dr. R wasn't concerned so all is good.

The only thing he "found" was that he heard a murmur in her artery in her groin. The groin that has seen many catherizations. She complains of pain in her left leg a lot. I thought maybe it was growing pains. Dr. R says it is because that artery has had so many catherizations it has narrowed, which is not uncommon. So therefore the blood is restricted through that artery, therefore blood is restricted into that leg and that means leg pain. The only treatment for that at this point is activity. The more she exercises that leg the more the blood flows and forces that artery to open up.

But my little Jilly. She's a wise one. She is a bookworm. Reads tons. I mean tons. I mean like I check her out 10-15 chapter books at the library and she reads them within a week. So when I make her come play outside with me, she does so willingly - unless she is in a good part of her book - then all of a sudden her legs are tired. And she must read. And finish her book.

Unless I want to practice Karate with her. Then game is on. *she doesn't take karate lessons but for some reason thinks she is a karate master - and a hip hop beat boxer - and a break dancer*

That girl keeps me laughing. Everyday.

And one more bit of information from her check up. Dr. R suggested we go to yearly check ups instead of every 6 months. But when he saw the look of horror on my face at the suggestion that we not see each other but every 12 months he backed off. He said he'll see her in 6 months, just for an EKG and a quick listen. But then we must separate a bit. Not see each other as much. He doesn't want any contact for a year. At least. But we can stay friends. Through email or phone calls. I feel like we broke up. That's good right?

Warning

2011-04-07T09:44:00.000-07:00

For those of you that blog - if you get an email from somebody named Kathy Lagoli and your blog name in the subject line do not respond. It may say something like "could we discuss this on the phone". It appears that somebody named Kathy read your blog and wants to ask you something about it. Since we are heart moms we always want to help out other heart moms - but this is a virus. If you respond to the email you could be opening up your email to be hacked. I researched it on line and it seems pretty widespread - so be careful.

Check Up

2011-04-05T13:06:00.000-07:00

Tomorrow is the day. 6 month cardiology check up. I told Jillian she's going to see Dr. Rivera tomorrow and she said "yeah! I love that guy. He took me for a ride in a wagon" I just love that she sees the positives in her doctor visits. Because she was in a lot of discomfort and he was pulling her in a wagon from his office to the hospital to be admitted because of a large hematoma in her groin after her last catherization. But she just remembers that he was fun and took her for a wagon ride. She also loves her 6 month check up because she gets to lay around and watch a movie while they do her echo. And we always go to lunch afterwards. So here is hoping another fun visit for her. No bad news like the last visit brought us. Hopefully all is going well inside that little body of hers.

EGHS Staff GQ 90's Routine (2011)

2011-04-02T10:28:00.000-07:00

I don't normally post things about myself (unless it relates to Jillian) but had to post this. I participated in a fund raiser at my school and it was the female teachers dancing to current music. We also had a 2nd routine where we danced to 90s music. I had so much fun. If you know me you know that I love to dance and my kids don't like playing Just Dance on the Wii with me anymore because I always beat them (except of course Jillian because she just likes to dance, like me).

Watch the videos. When the video scans to your right I am the person behind the girl in front with the blonde hair and blue flower in hair in both videos to the right (the 2nd video is on the next post). See if you can see me....and remember to scroll down and turn of my music so you can hear the video.

EGHS Staff GQ Current Routine (2011)

2011-04-02T10:17:00.000-07:00

So Awesome

2011-03-31T12:28:00.000-07:00

I've been keeping track of where all the seniors in my school are going to college. They tell me and I paste their picture and the name of the college they are going to up on my wall of fame. One of my students (Hi Chelsea!!) got accepted to Stanford (and UCLA but Stanford gets her). She is such an incredible kid. So I'm chatting with her and another of my favorite students (Hi Becca!) and I ask her her major....premed. And Becca reminds me that she told me Chelsea is going to be a surgeon. A cardiothoracic surgeon. One of those surgeons who wants to fix kids like Jillian's heart!! I told her I love her!! I think that is so cool - and obviously very near and dear to me. The world needs more brilliant kids becoming brilliant surgeons and more brilliant heart surgeons who specialize in CHD and fixing our kids!!! I am proud to know her. I can't wait to hear about the amazing things she does in the future. And you too Becca......

Proud Mama

2011-03-04T19:42:00.000-08:00

My first baby - Mikayla - got accepted to San Diego State University!! She was accepted to about 4 other schools but SDSU has been her #1 since she visited it back when she was a freshman.

I am so proud of her!!

Humbled

2011-02-16T18:36:00.000-08:00

Prepare - this may be long.....

I've shared here before that I am a high school counselor. For me, a priceless a job. I get to hang out with my favorite types of people - teenagers - and they cease to amaze me on a daily basis.

It can be emotionally exhausting work at times though. Sometimes the depth of sadness, despair and turmoil in some of their lives leaves me beyond sad. There is so much that most kids deal with on a daily basis outside of school it drives me insane when politicians and people like the Michelle Rhee's of the world go on and on about public school reform. But that political stuff is not what this post is about.

Today I was fortunate to be a part of a program my school organized for students to raise awareness about bullying, bring students together, tear down misconceptions, stereotypes and bring unity. Phil Boyte was the speaker and he is incredible.

I've done activities with students before, like Every 15 minutes and Unity Days, and it always amazes me how teenagers are so willing to open up when they are feeling respected and listened to. Today was no different.

There is an activity that is done in the afternoon, after the kids have gotten to know each other and feel a little more comfortable. It is called "cross the line". Basically everyone stands in a line and Phil will says things like "cross the line if you or somebody you know has been homeless". And it gets pretty deep. Violence, death, suicide.....

Afterwards Phil brings all of the participants back into the bleachers to talk as a group. He asked follow up questions to things we covered in small groups. Things like how would you change your school? He also allowed people to apologize to somebody in the crowd that they may have done something to in the past. It was so powerful to see these kids being vulnerable and admitting mistakes and taking responsibility for those mistakes.

Phil then went on to point out how each student is dealing with things in their lives that sometimes nobody else has a clue about. And how powerful it is to see that other's may be going through similar things. He then pointed out that there were six staff participating in the day.

What he said next caught me totally off guard.

Phil said that it was powerful to have staff share things about themselves too. And that one of the staff participating has a blog she writes about a personal and life altering situation in her life. And that a student had told him before the day started that she reads this blog. The staff who writes the blog doesn't know that the student reads it. But she does and it touches her and inspires her - and he said some other really cool things about what this student said about reading that blog.

I was sitting in the middle of all these students in the bleachers. Tears started rolling down my face. Could it be my blog? And how the heck do any students know about it?

So later I was sitting with Phil and my school's activities director and I said "whose blog is that?" Phil laughed and said "Yours - and you have made quite an impact on the student reading it." I told him I figured it was my blog because really? How many of the six staff sitting there blog about a personal, life altering situation in their life? But I told him I wanted to make sure because I was absolutely going to write about this on my blog!

One of the greatest pleasures in my job is knowing that I made a difference in a student's life. I know it sounds cliche, but it is so true. It makes all the other junk I deal with on a daily basis worth it.

Hearing that there is a student out there who reads my blog and is affected by Jillian's story and the aftermath humbles me. I'm still wondering how they found it. The fact that they continue to read it humbles me even more. And the reality that Jillian's story affects somebody, especially a student - I'm speechless.

Because it affirms to me that Jillian's circumstances in life have meaning. Her story and journey have purpose.

And the fact that I am able to write about Jillian as my inspiration and that has somehow inspired, touched or humbled another person is awesome.

Just as I hope that in my professional life I am making a difference, I too hope that is true in my personal life, through this life experience.

Teenagers are awesome.

Gleek

2011-02-14T22:01:00.000-08:00

You might notice if you visit my blog enough that I have a wide range of musical tastes. Something Mikayla and I share. She, however, only mildly shares my love of musicals and campy show tunes. My Jilly on the other hand loves musicals, the campier a show tune the better and her and I absolutely LOVE Glee. I think she likes the old 80 songs better than I do. *note: I let her watch the appropriate episodes of Glee because much to my horror they sometimes get a little to sexual for my 6 year old.

So you will notice that two of my new songs on this here blog are Glee songs. My girls got me Glee soundtracks for Christmas that I listen to in my car on the way to work - makes me happy. And when I'm working out and trying to get my groove on while spending 45 minutes on the eliptical I put on my Glee station on Pandora. Gets me in the mood.

Hopefully listening to those songs when you stop by to check on Jillian will put a little extra bounce in your step too.

This is What I think...

2011-01-21T19:01:00.000-08:00

I read a lot. And I read a lot about parents dealing with health issues in their children. How to raise a well adjusted child. You know, one who also happens to be dealing with a life-threatening illness.

And while I totally agree that the trick is not to make them a cripple to their disease, to help them become strong, independent people who live beyond their disease, choose to live life to the fullest, yada, yada, yada - there are times when said disease sucks.

Because you know what? Life is hard. Not everyone gets picked for the team. Not every child should get a trophy at the end of every season. Not every child is born with a healthy heart.

Life is full of disappointments.

The other night Jillian was feeling some major disappointments. She was telling me about a friend who wanted her to be a frog in the game they were playing during recess. Jillian wanted to be a dragon. The friend told her she was going to count to ten and if Jillian wouldn't be a frog then she wasn't going to be Jillian's friend anymore. Jillian said with every number she held her ground. When the friend said 8 Jillian said dragon - 9 - dragon - 10 - dragon. So the friend said "fine, we are not friends" and stormed off.

Jillian began sobbing. Her feelings were hurt.

She then unleashed. She was tired of not being able to play "chase" games anymore because her legs get tired. She was frustrated at not being able to play four square because she doesn't have the coordination and gross motor skills to do so. She was tired of having to find games she could play that don't make her tired or don't require her to run like her friends or do things that she just can't do...tired of sitting on the bench and watching. She finally said she was tired of feeling different.

I let her cry and instead of trying to minimize how she was feeling by saying the many platitudes that we sometimes say as parents...I said "you are right, this sucks." and she said "yeah, it sucks!"

So she had her cry. She felt the disappointment and frustration and sadness. But then she was able to see the many other things.....like her best friend G. who makes sure she always is part of any game. He makes sure that they play games Jillian wants to play and can play without feeling left out. She then thought of her other friends who wait up for her, who change their games to include her. And she thought of the things she is good at. Dancing, singing, Barbie playing, reading....

And she realized that her friend who said they couldn't be friends anymore was just being bossy and mad that Jillian wouldn't follow her orders. She was able to problem solve and figured out that tomorrow was a new day and she had plenty of other people to play with.

Letting her be upset. Letting her verbalize her feelings. Agreeing with her. That for her, at that moment, things sucked. Instead of negating and minimizing her feelings, agreeing that how she was feeling sucked - this allowed her to get all of that junk out and move on.

And the next night? Jillian and I were dancing like rock stars in her room to her Miley Cyrus CD and jamming on her electric Barbie guitar.

So you know what I think? I think that even though I believe all that mumbo jumbo about "choosing" to live life to the fullest, things happen for a reason, encourage Jillian to overcome any obstacles and be the best she can be.........this is all great and I will do all of it and more to the best of my ability. But some days suck.

Happy New Year

2011-01-01T09:18:00.000-08:00

The past month was busy but I think The Sommers clan had a great Christmas and we are definately looking forward to the New Year. Some big things will happen - Mikayla is patiently waiting to hear back from the colleges she has applied to, she will graduate in May and then I will be a sobbing pile of mush when she flies off to wherever in the fall. Haley will finish her first year of high school, hopefully on a positive note and relatively unscathed. Jillian will have her 6 month cardio check up and we will continue to hope that her check ups are uneventful. There are many more things for us to look forward to and my hope is that my family is happy, healthy and reaches the goals/milestones they set for themselves.

Here are some pics of some of our latest adventures:

We baked cookies:

Jillian had her first piano recital (I'll post more pics from that later because it was the most precious thing ever):

We went ice skating yesterday. Here are Russ and the girls when Jillian still thought ice skating was a good idea:

Then Jillian realized it wasn't such a good idea and had a bit of a melt down with Daddy:

Then we figured out a way to get her out on the ice:

Then she got real brave with Mom and Dad and had us skating around the rink:

She even took a couple of laps with Mikayla:

But then she got wise and had Dad take her around in style:

Hope everyone else has a healthy and happy New Year!

Parenting CHD 101

2010-12-30T15:49:00.000-08:00

I found this on Paul Cardell's site. It's fitting for how I've been feeling lately. I am trying to be a parent that lets go of my control issues and all the anxiety and fear I feel of having a child with CHD and have Jillian live a life without the CHD chains holding her back. It's hard but I have some great examples to lead me.....

Olympian Shaun White talks life with Congenital Heart Disease (turn off my music before you play so you can hear Shaun)

Heavy

2010-12-19T16:41:00.000-08:00

I know I haven't posted in awhile.

Sorry.

Today the CHD world sucks a little bit more again for me.

I found out that Steve Catoe passed away here:

Steve maintained a blog called Adventures of A Funky Heart. He was 44 and one of the longest living adults for the particular defect he had. He posted about Jillian a time or two and we emailed a few times. He also strongly advocated for CHD funding to find a cure for this disease. And the best thing he did was always cheer on us heart parents, through education, advice from somebody whose been where our kids are at and always with words of encouragement. I always read his blog and for about 3 weeks now there had been no posts. I finally found out the reason today.

Makes me sad.

Other Pursuits

2010-11-11T15:19:00.000-08:00

Yup, that's my little soccer girl. She has had fun. She has worked hard. She has made some decisions.

"Jilly, did you have fun playing soccer?"

"yes, it was fun"

"Do you think you will want to play again next season."

"No. I want to take break dancing lessons."

Alrighty then. Vanilla Ice in the making.

Can you Guess?

2010-10-29T20:11:00.000-07:00

Can anyone tell me what Jillian is for Halloween based on the above picture?

Hint: She's holding Captain Huggy Face and most days I am Lady Redundant

Heartwarming

2010-10-25T22:12:00.001-07:00

Jilly has a best friend at school.

He is the cutest little boy I've ever met. Really.

And he has just endeared himself to me in a way few people have ever.

I went on a field trip with Jillian's 1st grade class on Friday. I hung out with her best buddies mom. I see her in the mornings when I drop off Jillian. She always tells me how much G. loves Jillian. She even told me how one day he told her "mom, Jillian is so pretty."

So G.'s mom and I are talking during the field trip. And she's telling me how she tells G. that he needs to share Jillian with the other kids, it's ok if she wants to play with the girls. I was laughing because I was trying to take a picture of Jillian and G. and another little boy ran up but G. said "no, just me and Jillian"

So his mom tells me...."G. said to me "Mom, I have to take care of Jillian, watch out for her and protect her because she has a hurt heart."

Wow. What an intuitive kid.

We have never shared her story at school with her classmates. Some know. Like a few girls who were in girls scouts with her last year and heard her story. But she doesn't talk about it at school with her friends.

His mom thinks it's because he saw her scar and asked her about it.

So he plays with her every recess. He walks the track with her when she gets tired during recess. He protected her from an older boy who was bullying kids on the playground. When I drop her off in the morning he always gets the biggest smile when he sees her, reaches out and rubs her arm or pats her back.

It is genuinely the sweetest, most sensitive and precious interaction I have ever seen between two little kids.

He is the bestest friend a little girl could ask for.

New Read

2010-09-21T16:34:00.000-07:00

I just received this book in the mail today - My Heart vs. The Real World by Max S. Gerber

Riveting.

Here is what I read in the first pages:

"when they told me how brave I was, it always seemed a little strange. I never considered it bravery. How can you be brave when you have no choice? Choosing to do something I didn't have to do might have been brave (or it might have been stupid), but in this instance it was neither stupid nor a choice. It was certainly not bravery. Resignation might be more appropriate. Anyhow, those people who thought I was brave weren't there to see me kick and scream when the IV nurse came around. I never really could remember how bad it hurt, but I was always sure that I'd taken more than anyone else I knew......"

This is a photography book. The auther is a CHD survivor. He wanted to find others like himself and stumbled upon Camp del Corazon where he met many CHD survivors. He interviewed them and their parents. Took absolutely amazing and haunting pictures.

As he ends his introduction he says,

".....And as much as it may seem sad or it may seem tragic to someone else, I'll tell you right now how it seems to us: We've got a head start. We cut through life, right to the chase. We've got an unfair advantage. We've got a heart like a motor."

The stories in this book are incredible. I can't put it down.

It makes my heart ache. Reading interviews from heart kids about the struggles they have faced, the teasing, the limitations, the feelings.

If you are a heart mom get this book. It gives you perspective on what children who have paved the way have experienced, are experiencing. Their feelings regarding their CHD, surgeries, recovery. Fears about the future.

It makes my heart ache...but it helps to know Jillian is not alone. When the time is right her and I will sit down and look at the pictures, read the stories and talk about her feelings, her fears, her experiences.

I hope that it helps her to feel not alone in her travels along this CHD journey.

Another sleepless night...

2010-09-03T13:09:00.000-07:00

If you have ever slept on one of those chairs in the hospital that fold out to a little nap cot, you'll know there is not much sleep to be had on those things. I slept on one Tuesday night at UCSF. And lucky me, I got to sleep on one last night.

Well, I wouldn't really call it sleep because I didn't sleep much.

Oh yeah, Jilly was re-admitted to the hospital yesterday.

So...we came home from UCSF on Wednesday. That night while getting her ready for bed I noticed the area above where they insert the catheter in her groin was getting pretty puffy and very black and blue.

She stayed home from school on Thursday because she seemed to be in a lot of pain. All day long she laid around and did not want to walk or use that leg much and definately did not want me going anywhere near it. And it was getting more swollen.

I called Dr. R and he said to go ahead and bring her in and he would take a quick look at it. Probably nothing. Because she had a stent put in they use a pretty big catheter. He didn't seem too worried and I figured it would give me peace of mind.

I drove us out to Kaiser Roseville in the afternoon. Figured he would have a quick look. We would have a little laugh on my being paranoid and off we would go to the grocery store.

Dr. R came in and was talking to Jilly, asking her about pain, giving her permission to go to school the next day. Yucking it up. Then he looked at her groin, got a serious look on his face, looked at me and said "I'm going to admit her."

Alrighty then.

Put her in a little red wagon and walked her over to the hospital.

Ordered an ultrasound and started talking about anurisyms in her artery/vein. Not good. Actually very bad. What he was hoping for was just a huge hematoma that would dissolve with a pressure bandage. But her pulse in her left foot was weak and that was worrisome as well.

Ultrasound given. Blood taken. Huge pressure bandage put on.

And we sit.

And sit.

And wait.

Kaiser Roseville is a gorgeous new facility. But since we weren't an emergency or in any dire need of service we were tucked way back in the corner where I'm sure they put the rowdies and left there.

So she slept. I stared at the clock. And around 8am this morning Dr. R came in, said ultrasound looks good, blood work is good, hematoma it was but it has dissolved under the pressure bandage so go home.

And home we went. She's limping around and walking like a little old lady. But she's good.

I'm tired.

Never a dull moment when it comes to my Jilly.

She's back...

2010-08-31T15:02:00.000-07:00

Jillian is finally done and back in her room. She's still knocked out and should sleep for awhile.

Everything went ok. She had the coil placed in a small collateral vein coming of the pulmonary artery.

And as usual with her, she had another unexpected intervention. Her pulmonary artery had a fold in it which was restricting blood flow and causing the pressures in her heart/lungs to be low - which in a Fontan is bad. So they put in a stent and blew it open, getting rid of the fold.

Stents don't grow so she'll need it to be opened up again in about 5-7 years, but through cath so no surgery for that.

Overall the doctor thought her Fontan anatomy looked awesome and her heart function was great. So that is good news. Not so great news....we have to stay overnight so they can do x-rays in the morning and make sure everything is where it needs to be.

As they were moving her around getting her settled in her room she opened her eyes for a minute. She saw her daddy standing at the foot of the bed and she kept trying to focus her eyes to see what he was holding. She has been asking for a pillow pet since she saw them on T.V and Russ was holding the bumble bee one that she wanted. When she could focus her eyes enough she said weakly "A pillow pet!!" and held out her arms for it. She hugged it and said "Thank you daddy" and fell back asleep. I love that kid!

She's in

2010-08-31T11:27:00.001-07:00

Jillian's in the cath lab right now. We left her in the lab about 10:00am. It is anticipated that it will take about three hours. More to follow......

It's that time again

2010-08-30T16:47:00.000-07:00

Heart cath on for tomorrow. Check in 6:45. Updates to follow.

Spheres

2010-08-23T21:23:00.000-07:00

Delay in updates. My apologies.

School started last week. No pics for you. Yet.

Mikayla, Senior. Haley, Freshman. Jillian, 1st grade.

No one told me that 1st grade with Jillian would be way harder than her starting kindergarten. Way. Hard.

As Jillian's circumference of life increases, so do my fears.

As she marches off, slowly spreading those little wings, exerting her limited independence, I cringe.

1st grade is a full day. She's on the playground with bigger kids. She is doing physical education.

The start of 1st grade was great for her. Anxiety ridden for me. I spent most of last week in tears.

It didn't help that the school districts nurse who oversaw her emergency care plan is assigned to another area. And the new nurse didn't seem to be too confident of herself. And Jillian's teacher was not aware of the care plan. The result of furlough days and cuts in many services.

I met Jillian's teacher at back to school night on the fourth day of school. I had already emailed her a copy of the care plan and asked her to find a time to meet. She told me to catch her at back to school night to set a date.

I did. Between one set of parents leaving her class and another set coming in. She only had a few minutes. She gave me the date, said Jillian seems to be doing fine, and she's going to update her CPR certification.

Me? I cried. Couldn't really respond to anything she was saying to me because the tears were burning hot behind my eyes. Lump in my throat.

Cried the whole way home. Not sobbing. Just tears falling down my cheeks.

I am jealous, frustrated, sad, overwhelmed, worried.

Jealous that other parents aren't worrying about an emergency care plan.

Sad that Jillian has to have one.

Overwhelmed at trying to get everyone on board. Explain her condition so they know possible limitations she might face and what to do in an emergency but without scaring the hell out of them.

Frustrated that while everyone is worried about school supplies, new outfits, shiny new shoes, I'm worrying about Jillian learning to moderate her activities and taking care of herself.

Worried all day long. Wondering if she is ok. Is she resting when she needs to. Is she drinking enough water.

So every day last week I was on the verge of tears. When anyone asked me how Jillian was liking 1st grade I struggled to not have a quiver in my voice. Jillian? She's doing great, having the time of her life. Me? I'm a scared mom.

Oh yeah, this is not about me.

This? This being a mom of a heart kid is hard. The worry is exhausting. The hurdles are sometimes too high.

I would like to keep her sphere of life from expanding.

Sigh. I can't. I know I have to jump those hurdles. Stamp down the worry, the frustration, the anger, the anxiety, the sadness. It's damn hard!

And the heart cath is next week. Another trigger to these feelings.

But this week is better. She's exhausted from being in school all day. Trying to keep up with her friends. Soccer practice.

Yet for all my worry, frustration, sadness......she's blossoming. She's excited for each new day and what it will bring her. She is in amazement of all this expanding sphere is offering her in new experiences.

She is happy. She is wonderful. She is amazing.

Dates

2010-08-04T18:59:00.000-07:00

A little update on results from Jilly's cardiology appointment.

Halter test showed that what Jillian is experiencing is the awareness that her heart speeds up when she exersizes. No irregular heartbeats.

All blood work is good.

Cath appointment is set for August 31st at UCSF. Don't know what time yet.

Second soccer practice tonight and Jilly is still in love with it. I didn't share that after the last practice she had a complete meltdown that it was over. She wanted to keep practicing. Tonight she was bummed that it was over but no meltdown. She wants to know when the games are because this whole practicing thing? She don't need no stinkin' practice. Bring on the games.

Bring it on

2010-08-02T21:22:00.000-07:00

I did it.

I finally signed Jillian up for soccer and she had her first practice tonight.

Ok, Ok...I didn't really sign her up for soccer like most people do. I drug my feet. Asked about it. Drug my feet some more. Got the forms. Threw away the forms. Asked some more.

Opportunity then knocked.

Haley's coach of her soccer team has a daughter Jillian's age. They are best buddies. Were in the same kindergarten class. Haley's coach, at the last minute, stepped in to coach his younger daughter's team too. I trust him. He is one of the most kind men I know. And he is so good to my Haley, I knew he would be good with Jillian too.

So I bit the bullet. I asked him if Jillian could play too because you know the registration period was months ago. And of course he said yes.

But there was that pesky collateral vein thing weighing on my mind. I emailed Dr. R. Saturday night to ask him what he thought.

I should have known what he thought. His words:

"She'll be fine. Let her play. She needs to test her limits. I want her active and I want her to try and keep up with her peers. She'll be a little slower but that's ok."

I love that guy.

And that pesky collateral thing? He said it shouldn't limit her and she'll get it looked at through a cath soon enough. What are you waiting for woman?!?

Yesterday I stopped by a used children's clothes store. They just happened to have a pair of cleats Jillian's size that looked as though they had never been worn. Score!

She came home after a day of sitting in the sun watching Haley play soccer, put on those cleats, and dribbled her soccer ball all around the yard.

I explained that she would be on a team like her sisters. I have never seen her so excited. She jumped up and down, pumped her fists in the air and screamed "we are going to be the soccer sisters!!!!"

There was a bit of apprehension. She wondered what would happen if the girls were faster than her. That's been bothering her a lot lately when she's at Haley's games and practices and all the kids run circles around her. We talked about it and told her it was perfectly ok if the girls were faster than her. She said she would just kick the ball like Haley (Haley is the superstar of kicks).

We went to practice with her tonight and I have never seen her so happy. Her dad pulled up after the practice started and she announced to everyone that her daddy was there and gave him a thumbs up. Then her big sister Mikayla pulled up and she again announced to everyone that her big sister was there and ran over and gave her a fist bump. The other families were probably wondering why her whole family was there to watch her play soccer, taking pictures and videotaping her. Little do they know the trials and tribulations we have faced to watch her be on that field running around. I think we all had tears in our eyes.

Then after every kick she would run back to the end of the line and do a little dance. I am thinking that after soccer season ends she is due for some dance classes.

I love that we have reached this milestone. I am just sorry that it took me this long to jump over my own hurdles and get her involved in something that makes her so happy.

I know that she won't be able to keep playing like her sisters.

But for now the smile that playing soccer and being out with her peers......watching that skinny little body run around, face bright red, big grin plastered ear to ear.........absolutely priceless. And a memory I will cherish forever.

To Good To Last

2010-07-23T19:03:00.000-07:00

Jillian had her 6 month cardiology appointment today.

Do you know that every 6 months she has been seen by her cardiologist since her last surgery three years ago? And at every appointment we get a glowing thumbs up?

Not this time.

Usually when Dr. R reviews her echo he says, "good, good, good". What he saw today...not so good.

She is growing collatorel veins again. Something that is an unfortunate side effect of having her Fontan anatomy. Something that she will have again and again and again and again....

Because of her heart anatomy there is somewhat of a fight for blood flow going on in there. So her hearts way of dealing with this is to grow veins. Veins that shouldn't be there.

It's an "easy" fix. Go to UCSF and have a heart cath where they will go in and coil off the veins. Something they have done before.

The problem with these collatorel veins she is growing is that they are dumping blood back into her pulmonary artery. Which means blood is being dumped into her lungs. This "concerned" Dr. R. A word he's never used with us before.

So a referral is in to UCSF for a heart cath. Hopefully they do it soon and get it over with. And hopefully they don't find anything else that is concerning.

She is also wearing a heart monitor because she told Dr. R that her heart races. So he's making sure she's not having any irregular heart beats.

Reminds me that my little girl has a serious heart condition. Reality has a way of creeping up on me and slapping me in the face.

Before My Heart Stops

2010-07-19T15:59:00.000-07:00

This man, Paul Cardall, is such a huge inspiration to me. He is the oldest person I have been able to find who has had the surgeries that Jillian has had. He gives me hope. He is also extremely talented and has inspired Jillian. When I have shown her his blog and told her about his story she is more interested in the music. I have told her that some of the music she hears is him playing the piano. She says it is beautiful and she has decided that she would like to be a pianist like the "man who got a shiny, new heart".

If you have a chance, buy his book. I know I am. I'm sure it will be unforgettable.

**Make sure you scroll down and pause my playlist so that you can hear his beautiful music in the video**

Summertime

2010-06-29T15:05:00.001-07:00

It's summertime! We have been enjoying the time out of school - all 5 of us!!

So where did I leave off. Let's see....oh yeah, Jilly finished kindergarten and is very excited about moving on to 1st grade.

We then had a fun camping trip to Cisco Grove where at the end of May there was still snow on the ground....

Then came our speaking engagement at the Silicon Valley's Heart Ball. The CEO of Yahoo was chaired this event and she was a hoot! It was held at the private residence of a wonderful couple and here is the view from the back veranda of their back yard!

It was a small venue - only about 250 people. They had a comedian as the entertainment - you may have heard of him - Jackie Flynn. He's been in some movies - we sat at the same table and he was a very nice (and funny) guy.

The family

Me and my Silly Jilly

A lot of money was raised - which is good. After the event we sat and chatted with the CEO of Yahoo, her name is Carol. She got down at Jilly's eye level and said that she had some advice for Jilly. We waited to hear what this very influential and powerful woman had to say to our little girl.......and this was her advice "Remember this Jillian.....boys are stupid!"

Nice to Meet You

2010-06-01T20:43:00.000-07:00

I have noticed going back through some posts that I have had some new visitors. I am horrible about keeping up with people so to those new friends who have posted and said hi....Hi! Nice to meet you. I have stopped by your blogs too and plan to keep updated on you.

School is out. I have a job next year. So I will enjoy this summer. We just returned from a four day camping trip to Cisco Grove. Had a great time. And the elevation was about 5500 feet. And Jillian did great. She was full of energy and took a couple of long walks with me with no complaint.

Jilly and I made a list of things she wants to do this summer. Library, learn to tie shoes, learn to ride a bike with no training wheels, cook with mom and many more things. I am hoping we get to all of the things she brainstormed.

I have another speaking engagement. I am going to the San Jose Heart Gala and we will be the survivor story. This is a different venue than the ones I have spoken at before. It's at a house (mansion, really, in the Silicon Valley) with only about 250 people. These people are very influential people. Like the CEO of Yahoo! I have changed up my speech and we are updating the video. Russ and the girls will be with me. This time I am a little nervous but excited. It should be a great night.

I'll let you know how the night goes. I'm going to try and have one of the girls video tape it and maybe post it here.

And I hope everyone out there, new and old, is doing well.

Happy Birthday

2010-05-26T20:30:00.000-07:00

Today is Jilly's 6th birthday. Yes, hard to believe that she has been with us for 6 years now. Time goes by so fast.

We had a birthday party for her on Sunday complete with a the chocolate cake she requested but doesn't like to eat....

And a jumphouse with a bunch of unruly 5/6 year olds.....

Jilly told me that on her real birthday (today) she wanted to wake up in my bed with her family with her and a doughnut with candles. So we obliged her and woke her up with a chocolate doughnut with candles with a cha, cha, cha birthday song sung by her mom, dad and two sleepy sisters. She is pretty darn cute....

Unexpected Reaction

2010-05-03T20:42:00.000-07:00

I went. I ate. I spoke. Somewhere in between all that I fell apart.

The AHA's Go Red luncheon. I spoke at the luncheon. Showed Jillian's video. Gave my speech. It was a good speech. I think.

I was too busy trying to pull myself together.

When Jillian's video began to play I was standing behind a curtain of some sort. Waiting off to the side of the stage. Waiting for the video to end and then go up on stage and say my peace.

I've seen her video a thousand times.

I wasn't nervous about speaking. I'm actually enjoying it now.

But I watched the video as it played.

If you haven't seen the video there are some graphic pictures of her after surgery. Of her looking so sick between her first two surgeries.

Those pictures didn't get me.

As the video played and the pictures of her at home...happy, thriving, living. That got me.

That old familiar sob worked its way up through my chest and into my throat. I haven't felt it in awhile so it caught me off guard.

Have you ever felt that kind of sob? It's that primal sob that comes deep from within. A sob that is born from intense, raw, grief.

And there it was. In my chest. Moving it's way up into my throat. Trying to escape. Wanting me to let it out.

But I needed to hold it together. Just for a while. At least until I was done speaking.

So I took some deep breaths. Some hard swallows to make the sob go back home. Wiped away the tears. And took to the stage.

Talking about Jillian is easy. I can detach myself from the story.

But this day was different. Because for some reason the heartache felt fresh. Felt raw.

It took me most of the day to settle the demons back to the dark place where they belong.

I realized that the sob, the heartache....it was because she is here. With me. Right now. Today. Those pictures of her playing, smiling, loving, living are nothing short of amazing.

A miracle.

Speaking Engagements

2010-04-29T21:26:00.000-07:00

Yes, I am an absentee blogger. I apologize. I do have some catching up to do and some pictures to post. Maybe I'll do that tomorrow. After all it is furlough Friday for the EGUSD.

But I may not be able to.

I have unexpectedly been asked to speak at the AHA Go Red luncheon tomorrow as the survivor story. Ok, I"m not exactly a survivor of anything like heart disease or stroke. But I guess I am a survivor of heartbreak.

So I'll be telling Jilly's story. And since it is a furlough Friday and Jilly and I were going to take a trip to the zoo - she's going with me. Any opportunity to show off my kids cuteness.

And after I speak and eat some heart healthy lunch with my girl, off to the zoo we go.

And when I decide to give a proper update complete with pics I will share another speaking engagement I have booked with my agent in June. A very posh speaking engagement. One that has me excited and anxious all at the same time.

P.S. kidding.........I don't have an agent ;)

Out of the mouth of an oh wise one....

2010-04-05T19:52:00.000-07:00

Walked into the living room full of little people. An Easter celebration at Russ' grandmother's house. Jillian sitting at the kids table with her cousins.

Overhear her six year old cousin say "yeah, well I have zippers too. Lots of zippers. I got a zipper on my jacket"

Jillian's response "yeah, well I got a zipper on my chest."

Beat that.

Happy Easter

2010-04-04T18:15:00.000-07:00

Hope everyone has had a nice Easter. Weather here sucks. But Jilly had an Easter Egg hunt in the rain and had a blast.

Some updates: Jilly was re-evaluated for speech but still doesn't qualify for services. Her kindergarten teacher referred her because she said other adults were commenting that they don't always understand her. But the therapist felt her speech issues are age appropriate.

She was evaluated for adaptive PE. The guy who does this for our district is actually a friend of Russ'. He said he was not concerned about her but he did validate the concerns I have had for some time. She has a strange gait when running. But he said a lot of kids her age can have that. She is very cautious when playing. He pointed out a few other things but said he felt that they were all things she will eventually overcome or outgrow. Which is all I really wanted to know in the first place.

She is becoming very much the stinker lately. I think her teen-aged sisters attitude is rubbing off on her. That and her princess complex that in her world the word "no" does not exist and when somebody tries to implement that word in her world she reminds me of the Queen in Alice in Wonderland....."Off with your head!"

Other than that not a lot to update on. Life muddles along.

Exhale

2010-03-07T18:35:00.000-08:00

Pics from Dillon's Beach first:

Wow! What a week that was. Last Sunday I flew to L.A. for a conference and flew back Monday night. Tuesday I took Jilly to her girl scout meeting and then sat through a three hour school board meeting listening to impassioned speeches from parents and students to keep counselors and watch the board members still vote to eliminate all counselors from the Elk Grove Unified School District. Wednesday night had an incoming 9th grade parent dog and pony show.

Thursday and Friday were two of the most powerful days of my counseling career. My high school participated in the Every Fifteen Minutes program. If you have never heard of it...it is a program that highlights the effects of drunk driving. Every fifteen minutes a heart beat sounds over the loud speaker and then flatlines. At that moment the grim reaper walks into a class and I would announce a name. After the student left I would read their obituary. Their parents were then notified at work or home by a chaplain that their child had died (all parents and students agreed to participate in this program so the parents knew what was coming). There was a mock crash scene that the entire school attended where students were made up to look dead and were taken away by ambulance and hearst. The mock drunk driver was arrested and taken to jail. The "dead" kids were taken to the morgue. These were all influential students of my school. All those kid pulled out of class and those in the crash scene were then taken by bus to a local hotel for the night. They had no cell phones, no TV, no communication with anyone. We did some activities and I have to tell you I was blown away by these kids. The vulnerabilities they exposed will leave an imprint with me for life. I stayed at the hotel with them and maybe slept for an hour. On Friday there was a mock funeral. People spoke that had either had a loved one killed by a drunk driver or in one case an Elk Grove High alumni shared his story of driving drunk and killing his best friend. The "living dead" students read letters to their parents and parents read letters they had written to their "dead" child. It was a very emotional two days and one I was so glad to be a part of.

Then yesterday morning me and my three girls took off to San Carlos for a soccer tournament and got home this afternoon.

What a long week. Can't wait to get up tomorrow and start again.

Slacker

2010-02-22T20:44:00.000-08:00

Russ yells to me from the other room "Are you ever going to update this thing?" I guess he would be referring to my blog. If I go for more than a week it seems he goes through withdrawals or something. Like he's not here living this life and needs to check this blog to update himself on what is going on.

So let's see....where did I leave off.

We went camping at Dillon's Beach two weekend's ago. The weather was gorgeous and we had a blast. Jilly flew kites, climbed sand dunes and played in the ocean. We all had a very relaxing time.

Then we got back and Jilly was sick for 3 days. High fevers that just wouldn't go away. But eventually did.

In the midst of all the stress I am feeling about my job we decided to make ourselves extra crazy and started the remodel on our house that has been in the works for about a year now. So I have that going on that leaves my house in a constant messy state.

It was nice to see the sun today. It cleared the fog in my brain and made me feel like anything is possible.

We are planning another camping trip to Cisco Grove soon which is about 6000 feet. A little nervous about how Jilly will handle that elevation but as Dr. Rivera says "GO!" So we'll go and see what happens.

Will post pics of the ocean soon - there are some great ones.

Quickie

2010-02-06T08:26:00.000-08:00

Just wanted to post a quick update.

I mentioned a few posts back that I had found an email for Dr. Karl and emailed him some pics and an update on Jillian. He immediately emailed me back and gave me a quick update on where he is and why. And of course he was happy with how well Jilly is doing. It was nice to hear back from him.

Jilly and I led her girl scout troop meeting on Tuesday. We (or I should say me because she ended up telling me she was too shy to talk) shared her heart story. She showed them her zipper and then we led a whole discussion on heart health and activity. I found a song by Laurie Berkner called There's a Little Wheel a Turnin' in My Heart. I played that song for the girls and showed them the hand movements/sounds and they loved it. They actually sung it twice. It was a great night. It was fun sitting in a circle of 5 year olds and talking with them about Jilly and healthy eating and exercising. They were very interested in Jilly's scar, took a good look at it, asked a few questions and then moved on to ruminating about their favorite fruit. Gotta love 5 year olds.

Since that meeting I have run into a few moms who were there and they gave me some great feedback. And I love it when the conversations start out with "I had no idea". I guess that's the point.....she's a normal little girl with a special little heart. One of them was trying to tell me how awesome she thought the meeting was and her eyes stared welling up with tears. It reminded me that as I was telling this group of little girls about Jilly's heart my voice caught in my throat a few times. I suppose my feelings about Jilly and her heart will always be right there, ready to catch me up.

Her teacher has put in a request for a SST (student study team meeting) so that we can request a referral for her to get adaptive PE services. I'm not sure how much this will help. I have lots of questions when we do have this meeting. But it's a start.

That's all for now. I hope everyone has a great weekend. I'm off to stand in the rain for a few hours to watch Mikayla play soccer. Yeah me!

2010-02-01T15:16:00.000-08:00

The thumbs up is because she had her 6 month cardiology appointment today. Which leads to a lunch at McDonalds and some quality time with mom.

The appointment was great. Dr. Rivera said she has a beautiful Fontan heart. As he was looking at her echo he kept saying "love it, love it, love it". That always makes me happy to hear.

Her sat's were 96 - which is good. No problems to report.

We discussed how she has been expressing frustration with having to rest at school and not keeping up with her peers. He told me that, even though her sat's are 96, her Fontan circulation makes it harder for the blood to get around, so she will get tired more easily. His advice is to keep having her be as active as she wants to be, push her within reason, and she may eventually become more tolerant, or she may not. But she continues to need to learn to moderate herself. He even kidded me a little bit about not signing her up for soccer. So I found a little soccer program through the local parks and rec and will sign her up. I told him it's me, not her, that has the problem.

I am also going to look more actively for physical therapy for her. It's obvious her gross motor skills are somewhat delayed and her coordination is not great. When I had her go to south sac Kaiser her physical therapist kept wanting to work on her endurance, even though I kept telling him that was not the issue. So I am going to try and find a physical therapist with more of a pediatric emphasis on gross motor delays.

So all in all a great check up.

Russ has been transferring some of our old videos onto DVDs. Last night Jilly was watching one from the last time that Russ and I took Mikayla and Haley to Yosemite - the summer before I got pregnant with Jilly. We were at the top of a peak looking at half dome and all the beautiful scenary. Jilly said "take me there". And her cardiologist agrees - he said we should take her there. Take her anywhere and everywhere. I love that guy.

Courage

2010-01-20T19:13:00.000-08:00

Courage.....Jilly has lots of that. But she is starting to notice that there are some differences between her and her peers.

Lately she has told me on several occasions that she doesn't want to go to school. When I ask her why she tells me that it makes her mad when her and her friends are playing at recess and she can't keep up - that she has to rest. The first time she told me that we had a conversation on why she has to rest. We have since had conversations on how everyone is different and that's ok.

She has listened to me and expressed herself to me to the best of her five year old ability. But it still bothers her. It doesn't seem as though her friends say anything about her not keeping up or needing to rest. It seems it is her being observant and frustrated.

Which results in the occasional tears at school.

Her teacher caught me today and told me that it is getting better but she still has the occasional break-down or some pouting. So she asked if she could refer Jilly to a PIP program that the school has. Basically she will be pulled out one time per week for 12 weeks to work on her self confidence and helping her develop some coping skills. It sounds great and I'm thankful for her teacher keeping an eye on Jilly.

Speaking of courage and self confidence....Jilly's girl scout troop leaders asked if her and I would be in charge of the meetings for February. The girls will be working on a Go Red badge through the American Heart Association. Their idea was to have Jilly share her story so that they can generate a discussion on differences and acceptance. But also to talk with the girls about heart health. I asked Jilly how she felt about talking with the girls about her heart and she said "And I'll show them my zipper!!" She is very excited about it and we have been talking about what she will say to them. I think it is helping her work out for herself what it means to have a special heart and how that may at times make her feel different.

My sister in law works for AHA and is helping organize the AHA annual heart ball. She jumped on the idea of Jilly earning a Go Red badge. She came up with the idea of during our activity with Jilly's girl scout troop to have each girl draw on cardstock their heart when it is healthy and happy. She is then going to have all the cards posted and framed together and then auctioned off at the heart ball. So cool.

It is wonderful to watch Jilly grow and start becoming aware of the world around her outside of our little family bubble. But at times it is also sad and frustrating. I hope she continues to verbalize her frustrations and is able to learn to embrace her heart and all it brings to her life, the good and the bad.

A New Year..Hopefully A New Perspective

2010-01-03T10:50:00.000-08:00

Happy New Year.

I was reflecting on things last night and sat here at the computer and read back through Jillian's blog. Specifically my journaling during her surgery in May of 2007. I so wish I had journaled during her first two surgeries...but unfortunately I didn't. The thoughts and feelings I wrote about hit me hard. Because sometimes I get complacent and almost....that's a very big almost...am able to forget about Jillian's heart.

But reading back through those thoughts and feelings reminded me how very lucky I am. Made me remember that I need to always appreciate the gifts in my life. Stay positive....etc. etc.

So I looked up Dr. Karl. He's the surgeon that performed all three of Jillian's surgeries. He is no longer at UCSF. The wonder of the internet led me to find that he had went back to Australia. As far as I can tell anyway. I found an email address for him and sent him an email with some pictures updating him on Jillian. Hopefully he gets it.

It is amazing how one person can have such an impact on a person's life. And he has. I read back through a post I wrote back when Jillian was in the hospital. How a conversation with Dr. Karl led me to re-evaluate my perspective on Jillian's health situation. Allowed me to look at the glass half full instead of half empty. Allowed me to see the birth of Jillian, her situation, the surgeries, the heartache, the worry....as a gift. I owe so much to that man.

As I was writing the email Jillian kept wondering over to find out what I was doing. I told her I was emailing the doctor who operated on her heart. She thought about it for a minute and then asked me why? I told her because I wanted him to know how wonderful she is doing. And she said "I remember him". I said "you do?" She said "yeah, he's a very good man". Yes, he is a very good man.

Reading back through these posts helped me to shift my current thinking on what this new year may bring to me. With the broken budget here in California public schools are suffering in major ways. My district's superintendent and board members feel that one way to fix their budget is to eliminate ALL counselors. They have already voted on it and I will more than likely receive a pink slip in March. The union is negotiating with the district so things could change if concessions are made...but nothing is guaranteed and in fact it appears that some people don't see the benefit of counselors. It's one of those situations that I have little control over. Sure, I can voice my opinion, I can gather support but ultimately if the district decides to eliminate counselors to save money they will do what they feel they need to do.

So I have been stressed about that. It would mean the elimination of my career. The career I have been in for over 15 years. The career that I love and feel is very important. And I start worrying. Many unanswered questions. But bridges that I can't really cross until I know for sure what will happen and I may not know for sure until the summer.

Lately when I have been talking about upcoming things I start off by saying "since I won't have a job" and Russ finally stopped me and let me know I am being a huge pessimist and much the downer.

So I am trying to change my perspective. Appreciate that I have a roof over my head, a great husband (who will remained employed), great kids. And a daughter who shouldn't be here with us given the mangled nature of the heart she was born with....but she is. So what do I have to worry about?

Things will work out. One way or the other they will work out.

And at the end of the day I will remember the gift I was given and appreciate that gift. Life is good. It really is.

Christmas done and gone....

2009-12-26T08:54:00.000-08:00

I hope everyone had a wonderful Christmas. I know we did. I'll give you a little update on the whole season with pics.

Back in early December we went to a Christmas party hosted by the support group Hearts of Hope. The girls got their visit with Santa and a present - which Jilly was amazed because he gave her a Barbie and that was exactly what she wanted - how did he know???

the girls with Santa

My little mischevious girl

I think these are probably the most beautiful girls ever!

The rest of the season was filled with shopping, Christmas parties, cookie making, a short visit to our cabin and a sled down the snow (we only did it once because it was raining) and then visits with family.

Christmas eve at Russ' dad's house - the tree and presents before the madness

I haven't downloaded the pictures of Christmas morning and day yet - but the girls were happy with their presents and then we spent a wonderful day at Russ' Grandma's house with his mom who was here from Oregon and a gazillion relatives - it was great!

But here is Jilly with the one present she kept asking for:

A pink snuggie!

And Mikayla asked for a Cheetah snuggie and a new book (among other things like a date to take her driving test!)

And now the fun starts - a week of home improvement, organization and purging of the junk that invades our cabinets, closets and garage! Wish us luck - or more specifically wish Russ luck since he is the packrat!!

Why Not?

2009-12-23T21:05:00.000-08:00

Have you ever thought back to an experience that left you wondering what if?

As I was out Christmas shopping today I passed by an accident. One that could have easily involved me had I been at that spot two seconds earlier.

And it made me think of a few times in my life I was left to wonder why?

Like the time I was driving home from Russ' apartment when we were dating in the middle of the night. I had pulled over real quick to pick something up off my floorboard. I then went through an intersection and a car speeding ran through a red light and passed right in front of my car with me slamming on my brakes. I sat there for a few minutes wondering "what if" I hadn't pulled over a few seconds earlier.

Or the time this past May. I had just dropped Haley off at the county fair early in the morning. I was walking back to my car and some men were working on putting a very heavy flagpole up. As they got it in an upright position it fell over the other way, missing my head by inches. Scared me so bad I had to sit down. And again, I wondered "what if" I had slowed my pace down, lingered a few more seconds settling Haley in.

And a few things that stand out in my mind with my kids. Like when I took an infant Mikayla to see my dad for the first time. He was holding her and his big dog came out of the house. My dad held her down for the dog to see (why, I have no idea) and the dog opened up his big mouth and lunged at her face growling. My dad pulled her away just as his mouth shut down, missing her face by a hair.

Or the time Haley was 5 and swallowed a quarter and was upstairs choking on it, turning blue and unable to call for help. I didn't even know what was happening until I heard her pound on the wall at the top of the staircase and was able to get to her just in time.

All the instances have made me take stock of my life. Grateful for the many blessings that I have. But it has also made me wonder what forces in my life have pulled me away from disaster just in the nick of time?

When I passed by that accident today it made me ask "why"?

When Jilly was born and our world turned upside down there was a very dark period of time that I asked "why us?"

And every time I verbalized that feeling to Russ his response was "why not us?"

Sometimes that response pissed me off. Depending on the mood I was in.

But he was right. Why not us?

I am not an overly spiritual person. But I do believe that there are forces at work in our lives. Angels among us maybe? Not sure.

But I do know that this Christmas season there is a greater appreciation that it was us. That we passed through that proverbial intersection and were broadsided with major injuries. It was us in that instance. And because it was us it has given the season to believe a whole new perspective for me.

Why not us?

I hope you all have a magical Christmas season.

Here I Am

2009-12-04T18:01:00.001-08:00

I realize I have not updated in awhile. So I'll give a little update on what has been going on. Haven't been around much and when I am home it's to drop off, pick back up and off to something else.....soccer, girl scout meetings, 4H meetings, etc. etc.

Last week Mikayla and I left on Wednesday to drive down to San Diego for a college showcase soccer tournament. Russ and the other girls stayed behind because as usual the high school football team that Russ coaches made it to the play-offs and had a game the Friday night after Thanksgiving. As a matter of fact, they won that game and are playing tonight in Grass Valley. Jilly, Haley and I decided to stay home in warmth and we are going to watch Christmas movies, pop popcorn and drink hot chocolate. But I am off topic.........

So we drove down there. And on Thursday (Thanksgiving) we visited some college campuses, went to the beach, saw a movie (Should have saw Blind Side but saw Precious instead...mistake but that's for another post) and had our own little Thanksgiving dinner together.

Visiting CSU San Marcos - she was not thrilled, it's very small and in the middle of a desert

She absolutely fell in love with CSU San Diego

My laid back, hippie child

Although I missed my other girls and husband, I have to say that I hold these soccer trips near and dear to my heart. Because I only have one more year of hussling her around before she flies off to college somewhere, these trips allow us time together that I absolutely cherish. We have more fun together on these trips and have made so many great memories and the talks that we have are priceless.

We came home about 2am Sunday morning so Russ made a full Thanksgiving dinner for us Sunday afternoon. And then we decorated the Christmas tree.

On Wednesday I flew to L.A. with about 17 high school students and visited the Museum of Tolerance. Absolutely one of the most amazing experiences and something I will write more about soon.

And of course the one time I agree to go on a school related activity with my students my own little shiny star received an award

Jillian is the student of the month

So Russ went to see her get her award and took lots of pictures and even texted pictures to me during her award. She didn't know she was getting it so was very surprised to see Daddy show up in her classroom and even more surprised when the principal (in the picture) presented her the award. I am so very proud of her.

More business going on. Christmas party tomorrow night, soccer games, more decorating to accomplish, you get the idea.

Who Knew

2009-11-23T19:29:00.000-08:00

First things first. Jillian was sick. Sudden onset of bad headache and fever. So she got to take some Tamiflu. Because even though she had the H1N1 vaccine about 3 weeks ago she can still get the swine flu. Who knew?? Obviously I didn't. The doctor kind of chuckled at me when I asked if she received the vaccine could she still get the virus. His response was "definately!" Well, I'm no genius. I don't think she necessarily had the makings of the swine flu but just to be on the safe side she got the Tamiflu. And who knew that Kaiser, to decrease the risk of spreading germs, has Doctor appts. by phone? They give you a time that a doctor is going to call you and then you wait by the phone. But she is feeling better now.

And on to this.......

My baby turned 16 on Saturday.

We had a surprise dinner party for her at Bucca Di Beppo. And she was actually suprised! Although in this picture she is more embarrassed than surprised.

Again.....the embarrassment

But she'll always be daddy's little girl

Meltdowns

2009-11-10T18:29:00.000-08:00

When Mikayla and Haley were little one of their favorite stories was The Kissing Hand.

When they started school they both had rituals we had to do at drop offs. They were never real fond of me leaving them. Mikayla especially would get a little weepy at times. And Haley had a hard time with transitions.

So we came up with an idea. When I dropped them off I would give them a kissing hand and they would give me one. And as I was walking away we would touch our cheeks with our kissing hands.

Then one day Haley told me she was worried that the kissing hand wasn't working. She thought that because she had to wash her hands at times throughout the day that she was washing off the "kiss" that was supposed to be comforting her while I wasn't with her. And Mikayla agreed.

So we developed a special spray that after we would kiss each other's hands we would spray a little of this spray into each others' hands and it would keep the kiss on our hand all day, no matter how many time we washed our hands.

As they got older and more independent the kissing hand was needed less.

It was always a great memory for me. But I had sort of forgotten about it until recently.

Jilly is having a hard time with her emotions at school. I had my first parent/teacher conference with her teacher yesterday. Academically she is doing fantastic. Reading like a champ. The only "concern" is that Jilly cries very, very easily. I knew this. I had hoped it would get better in kindergarten, new experiences, new people. But it hasn't. And it is actually worse when I am around.

I have given Jilly a kissing hand a few times before. Mostly at bedtime when she tells me that she had bad dreams.

Last night we were laying in her bed talking about the day. I shared with her how awesome her teacher said she is doing in school, how smart she is - she says "yeah, I know". And then I ask her if she is still crying alot at school. She says, "yeah, sometimes I just can't help it". So we talked about things that make us cry and how to use our words.

She then said "what about a kissing hand?" I told her I thought that was a fantastic idea. That I could give her a kissing hand when I drop her off at school and if she is feeling sad or feels like crying to put her hand to her cheek and mommy will be giving her a kiss to make her feel better.

She thought about it and said that would help her a lot but her teacher has them wash their hands a lot and what if she washes the kiss off and feels like crying?

So I told her how when Mikayla and Haley were little like her we developed a special spray that would protect the kiss and keep it on her hand no matter what.

She thought that was pretty cool so I showed her how we spray the kiss to protect it. She then touched her cheek and told me that makes her happy.

She then pulled my hand up to her mouth, kissed it and sprayed it with the special spray. And she told me she would do this for me in the morning in case I was having a bad day or missing her I would have her kiss to make me feel better.

And it worked.....for me anyway.

Catching up with Pics

2009-11-06T21:31:00.001-08:00

Here is a little recap of our Halloween in pictures:

Jilly working hard at carving her pumpkin

Our finished product - the first one is Haley's - she carved her skull and crossbones upside down:)

We then went to Jilly's school's fall carnival and Jilly had so much fun on this slide

this is Jilly and Mikayla - Mikayla was helping out in the haunted house - she graduated from this elementary school and went to every carnival while she attended

then Jilly had a carnival at her daycare - here she is in a sack race

and a doughnut eating contest

and then trick or treating with Haley and some good friends of ours

super girl and her SuperMan

I did it

2009-10-28T18:44:00.000-07:00

Jilly got her H1N1 vaccine tonight. Thank you very much for all your comments and emails.

Yes, I am like a lamb being led to slaughter.

I say that in jest, really. But the research I did on the internet shed a whole new light on the meaning of wackadoodle.

Did you know there are sites out there written by people who truly believe the government is trying reduce the world population by having introduced the swine flu in the first place and now injecting us with chemicals. What I found is that there is a huge mistrust in our government, our medical community, research labs, pharmaceutical companies, the list goes on.

I did find some legitimate reasons to be concerned but then I found some answers and solutions - but I'm not here to sway anyone's decisions or become a propaganda machine so I'll keep that information to myself.

For some reason the decision to have her vaccinated was really hard. I"m not sure why. Not because of any conspiracy theory, more just some good old common sense that led me to want to know more. The whole way over to the medical office I was still feeling unsure about my decision.

Holy Cow!! Half of Elk Grove had beat me there. Waiting specifically for the H1N1 vaccine. I waited in line for over 45 minutes.

Safety in numbers. If they are all here for it then it must be ok. Because if something fishy is going on and the government is trying to turn as all into pigs, then most of Elk Grove fell prey to their trickery.

And were off to carve some pumpkins.....

H1N1 Vaccine

2009-10-27T09:59:00.000-07:00

The H1N1 vaccine is available for Jillian at Kaiser. Just found out so I haven't taken her in yet. I have tried to do some quick research on the safety of it. Of course there is tons of conflicting information. And of course both her pediatrician and her pediatric cardiologist both say it's safe.

I am not one to follow conspiracy theories or extreme views. But there is a case to be made that the vaccine was developed very quickly.

So I am just curious - for all you heart moms out there - or moms in general since all children are considered a high risk group and can get the vaccination when available - what are you all thinking? Have you already had your kids vaccinated with the H1N1 vaccine - are you planning too? Let me know what you are thinking about all of this. I want to know.

Bits and Pieces

2009-10-22T08:59:00.000-07:00

So yes, somebody lost her first tooth. It was wiggly, she wanted the tooth fairy to bring her some cash, so she pulled that sucker right out. And was very proud of herself.

She's been a busy gal. We went on her first field trip with her kindergarten class yesterday. Very cute. She has a halloween party tomorrow night at her daycare. She has a halloween carnival next Friday at her school.

And Jilly finally has something of her own. She had her first girl scout meeting on Tueday. Now, the world of girl scouts is very new to me. I never did girl scouts. The older girls never did girl scouts. But she really wanted to do it because a couple of her best buddies from school are doing it - so here we go.

It is interesting how being in this heart world has opened up a new perspective in life for me. I have mentioned time and again how Russ and I run into students and others whose lives are affected by CHD. Russ has a student this year, somebody who Mikayla has gone to school with since kindergarten, who had open heart surgery not too long ago and was in and out of the hospital with some heart issues. He reached out to his mom, let her know he understood what she was going through. Her response was that of finally, somebody who knows what I am going through. A friend of mine recently was told her little boy has to have open heart surgery. She was stressed. I tried to give her as much information as I could to help relieve a little tiny smidgen of stress.

And then at the girl scout meeting the most interesting thing. As I was filling out all of the paperwork I went up to speak to the two moms who are the leaders. I told one that I would bring the emergency information to her another day because I needed to attach some paperwork and take my time filling it out. I mentioned that Jilly has a CHD and I just want parent chaperone's to be aware of her health issues in case she goes on an outing without me.

But when I said "Jilly has congenital heart disease" the other leader mom laughed, pulled down her shirt to expose her scar and said "Me too!" I laughed and said "What do you have?" I have since forgotten what her CHD is but she said she's had 2 open heart surgeries. Then she touched my arm and said "you are not alone - she's in good company"

The irony that here we stand, two adults, one living with CHD and the other living with someone with CHD, laughing at our connection.

I guess it's nice that I can laugh out loud about these little ironies. These little connections that seem to keep happening. I guess if I am not laughing I am wanting to cry.

Like on Jilly's field trip yesterday. Sitting on the hayride with a bunch of moms - who by the way seem so much younger than me...but that's what happens when you have a baby later in life. It seems that there are a bunch of Sutter ICU nurses whose kids attend Jilly's school. So they were talking about ICU life, one happens to work on the cardiac ICU. And she's talking about a 14 year old boy who had a berlin heart or something like that I think. Talking about how amazing it is to see kids come in and get heart surgeries and the amazing things these surgeons are doing. And the other ICU nurse is agreeing, having just worked a graveyard shift and has not slept yet.

And the whole time part of me wants to say "yeah, pretty amazing stuff" But I don't want to get into that conversation of how I know that stuff is amazing. I don't want to use Jilly as a segway into conversations.

One of the ICU mom's turns to me at the end of her conversation and says "I just love Jillian, she is absolutely adorable."

Yeah, I agree. She is. I would much rather use her cuteness as a segway into a conversation.

Apple Hill Pics

2009-10-18T16:12:00.000-07:00

So I'm a week behind but here are some pictures from our annual trip to Apple Hill last weekend.

Jilly and a big pumpkin she found

Surfing the pumpkins

Trying to take a family pic and our little ham wanted to dance instead. I'm actually thinking I like this pic so much I may use it on my Christmas cards

riding a pony

Jilly and her "Coco"

My girls

My beautiful girls:)

If it makes a difference to just one..........

2009-10-09T14:15:00.001-07:00

I have mentioned before somewhere in the history of this blog a friend of mine who is a teacher who has used Jillian as an example of why her students should appreciate their lives and stop sniveling and whining.

Russ does too. Uses Jillian as an example. An example of why his students should appreciate the things they have. Why they shouldn't stress out on the little insignificant things in their lives. Why they should treat others with kindness because you never know what another person is going through in their life.

In my last post I noticed a new comment. It was from one of Russ' students. Didn't leave their name. That's ok. Because it did not matter whether or not we know who it was. It mattered that they heard what their teacher was trying to tell them. It mattered that they took the time to find Jillian's blog. It mattered that they took the time out of their busy teenage life and read her story. And that they were able to empathize. That they took the time to leave a comment and let us know that they heard Russ.

It mattered to us that Jillian's story mattered to somebody else. And affected them. And made them stop and think. That's all it takes. Just one person.

Jillian is on the postcard that the American Heart Association sent out this month. If you got one in the mail isn't she cute? I'll have to scan it and post it here.

We are off to Apple Hill this weekend. Can't wait.

A Poem Found

2009-09-24T09:53:00.000-07:00

Found this on another blog while I was trolling today.....amazing.........

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”

Author - Stephanie Husted

Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden.

Looking Grown Up

2009-09-23T19:53:00.000-07:00

A certain little cutie pie got a new do going on.........

She looks so grown up

and yes, we have a Halloween costume already - she is Super Girl....very fitting I must say!

My Heart Sings

2009-09-11T10:14:00.000-07:00

Life has been stressful lately. More so than usual anyway.

I often sit her and contemplate the life stretching out ahead of me. I think it has to do with the real possibility I may get laid off from my job as a high school counselor next year because of California's economy and the cuts to education. And that is stressful.

I love my job. I think I'm pretty good at it. And the kids need counselors. Now more than ever. And it's a job that allows me time with my kids. I pick them up from school, I go on field trips, I have summers with them, holidays. It's perfect. And it helps that I actually like my job.

Health care seems to be on my mind too. I don't follow politics too closely. I have been trying to learn more about Obama's health care plan. Because whatever happens will directly affect us, obviously. But more so, I think, because of the life long health care that Jillian will need. America's health care needs to fixed. I just don't know enough yet to know if Obama's plan will fix it - and I won't be like a lot of other people and comment on it either way - because I just don't know enough. And that is stressful.

But as stressful as I feel things are at the moment, I think the health care Jillian has recieved thus far has been extraordinary. Because Russ and I both work in the same school district we have dual coverage - so everything is covered. All of her surgeries, medicines, doctor visits.....everything. She has cost Kaiser a little over 2 million dollars so far - and we have not paid a dime. But that could change. If I am laid off we don't have dual coverage. We may incur some costs. Our district is looking at other options to bring down their costs for employee health care - could come out of our pocket somewhere down the road. That is stressful.

Jillian is with us today because of the great advancements in medicine. Because of the great health care that was made available to her. I hope that she will always have access to great medical care. That she will get whatever she needs when she needs it. And it scares me that if something doesn't change or if things change too drastically - if she can't get covered when she is an adult or the other multitudes of what ifs out there that could affect her - that is stressful.

Winds, they are a changing. For sure.

I picked Jillian up from kindergarten the other day and then dropped her off at her old preschool where she goes to play and take a nap. She runs into the play yard and all of the younger kids scream "Jilly's here" and run around her and hug her and then they all run off. I was backing out of the driveway when I glanced back up, stopped the car and just sat there and watched her. I must have just sat there, in my car, for 5 minutes. The sheer joy she had running around, chasing her friends, screaming, laughing was priceless. The fact that the medical care she has received, is receiving and hopefully will receive for years to come has allowed her to run and play at that very moment is absolutely amazing. And I literally felt some of the stress I have been feeling over things I have zero control over fall away. Sitting there watching her happiness made my heart sing. Seriously.

And speaking of hearts singing. Paul Cardall received his new heart. For those of you who read my blog who are not in the heart community Paul is a 36 year old CHD survivor who had the Fontan surgery that Jillian had when he was 7. He's been on the transplant list for over a year. His story inspires me to believe that Jillian will too live a long and fulfilling life. And maybe, just maybe, with heart warriors like Paul out there, and the medical advancements that have occured since he had his Fontan at age 7 - Jilly won't need a heart transplant. Or if she does she'll follow Paul's lead and not need one for a very, very long time.

Beaches

2009-09-07T20:13:00.001-07:00

So I was traveling through Orange County on my way to yet another soccer tournament and I happened to find myself at a beach.

Jilly being silly

Jilly yelled at Haley to get out of the ocean before it ate her up

the girls watching the waves

We didn't stay very long but the girls had a blast. Haley swam and Jilly rolled around in the surf and screamed at the waves.

There have been some cases of confirmed swine flu at the girls' schools. I had an email discussion with both Jilly's cardiologist and her pediatrician because it scares me. They both reassured me that as soon as she gets any kind of fever she can get the tamiflu - which makes me feel somewhat better - although this swine flu thing still scares me. But as Russ likes to tease me I could worry about everything in the world if that would make me feel better. It might.

Her first school picture

2009-09-03T06:45:00.000-07:00

Yes, I know....she's adorable. Russ says she looks scared in this picture. No, she was trying to do her cheesy grin she does when a camara comes out but the person taking the picture was trying to get her to smile naturally. Whatever, she's still cute.

She is getting more settled in kindergarten, although she still plays me EVERY morning. "mom, I would like to stay home with you" When I tell her we can't stay home she will tell me that "then you have to walk me in to class, watch me put my bag away and pick me out a color to color with". And we do this sketch everyday. It's pretty funny. But she has made a few little buddies that she had a great time playing with.

The Sommers household is busy as usual. I was in Newport Beach last weekend for soccer and I drive down tomorrow to Irvine for more soccer. Jilly is going with me this time though and I think somebody may be taking a little detour to the beach and maybe even someplace with princesses. We shall see if time allows.

One week down....

2009-08-23T08:47:00.000-07:00

We have been in school for one week. Started off like this.....

outfits picked, smiles on, ready to go

new backpack, big smile

crown on her head, still smiling

But that is where the smiles ended. I didn't have the heart to take pictures of her bottom lip dragging on the ground and the big crocodile tears when I got ready to leave her. And this continued on all week. Kindergarten was not a big hit for Jilly. She informed Russ and I that she was done with Kindergarten. She'd had enough after the first two days and was ready to move on. She spent Monday and Tuesday nights trying to negotiate her way out of having to return to kindergarten the next day. It was pretty pathetic. She even put her stubborn horns on and told me she was refusing to make friends because this kindergarten thing? It was overrated and she wasn't going to be there much longer so why make any friends. But by Friday she was starting to settle in, no tears and she was actually excited about the thought of going back in 2 wake up days.

But today she woke up and asked me if it was a school day, because remember? She's done with kindergarten don't you know.

Hitting Home

2009-08-16T20:32:00.002-07:00

We got back today from an impromptu runaway...oops I mean getaway to the in-laws lake house. Russ and I were feeling a lot of stress from different things, one of our girls was feeling a lot of stress, so we decided to get away from it all. The house we went to sits right on a lake so we spent a lot of time just sitting on the deck, looking at the water, just sitting with nothing to do and trying to relax. I think I managed to let go of some of my stress. But we are home now.

School starts tomorrow for all the girls. They are excited. Jilly is a little more apprehensive though. She drew a picture of her crying and said that is how she feels about me leaving her at kindergarden tomorrow. She says she will cry because she will miss me but she will try to have fun. I think though, that I will be the one who ends up crying and she will be fine.

Her care conference went fine on Friday. It is still so surreal to me when I sit and talk about her cardiac issues and history. The staff at this school though is so caring. I am sure she will be fine. Won't stop me from worrying though.

Some of my stress comes from the issues with our economy hitting a little too close to home. Going back to school brings back the realities of the huge cuts education has taken. I know there are those not in education that think educators are just a bunch of whiners. But it's bad in public education. California now ranks last in student spending and we even fall behind Puerto Rico. The threat of losing your job is a stark reality now. There may come a time real soon, and is already a reality in some areas, that parents and students won't see librarians, counselors and sports. And it's scary.

So we look to the horizon and see all the positive things that are going on around us. Like the best thing of all. A little blonde haired, blue eyed girl who has her backpack ready to go by her bed and who is trying to comfort her mama and convince me this growing up thing is all good.

A birthday

2009-08-06T14:52:00.000-07:00

Haley turned 13 yesterday - yes, that would be her in the middle with the bangs. People tell us all the time that they think she is the older one but there is 3 years difference between her and Mikayla.

So um........let's see...........what's been going on since I have been absent for a bit. Mikayla has her drivers permit and is now driving - not with me though, she scares me - she does that with dad. She went to Mexico for a week with a friend and her family and had a blast. All the girls are getting ready for and excited for school to start.

And Jilly is too. Can't wait. Keeps asking me how many more wake up days until she starts kindergarden. Went and bought her a backpack and she is so darned cute!

The picture above was taken this past weekend. The girls and Mikayla's best friend and I went to The Shoreline Ampitheater to see The Fray and Jack's Mannequinn. What a great concert! And the night before Russ and I went to see my best friend from high school in Sweet Charity at Runaway Stage Theatre. We had a great time.

I'm back at work...boo!!! Russ goes back next week. Life as usual.

Compassion, Pride and Pity

2009-07-26T22:35:00.000-07:00

A couple of weekends ago we were at a soccer tournament with Haley's team.

There are younger siblings that come with this team. None Jilly's age though.

There are a couple of kids that are 7 and 8 and then on up the age food chain.

One of the little girls is 7, the closest to Jilly's age. Jilly calls her "friend". But the girl has more important things to do than play with a "little" girl. She's got older "friends" to chase around and try to hang with.

This bothers Jilly because she wants this little girl to sit and play with her.

I watched Jilly try to interact with this little group of older kids. Of course at 5 and new to the ways of social interactions between kids, she just hung at the fringe.

Then I saw the little girl point at Jilly's chest and whisper to another little girl - "she's got a scar, she had a surgery for her heart, we should be nice to her"

Jilly heard this and immediately saw a way into this little group.

She pulled her shirt down and showed them her scar. They slowly gathered around her. A few asked where it came from.

She proudly stood there and said "I had a surgery, I had a broken heart."

They oohed and awed at her for a bit.

She was as proud as a peacock standing there. She had their attention. She was all smiles. She looked over at me and flashed me a thumbs up and a wink - like "hey mom, isn't this the coolest"

I winked back and smiled at her.

And then the mom of one of the little girls pulled her aside and told her to stop it.

Stop what?

So the kids moved on to something else. And the look on Jilly's face made me so sad.

She tried a few more times to get their attention with her war wound, but they were done, moved on.

Jilly took it in stride though and came and sat back down on her blanket and began playing with her toys.

It was with mixed emotions that I watched this interaction with Jilly and those kids. Proud of Jilly for not being ashamed of her scar. Proud of those other kids for not being afraid to ask her about her scar and showing real interest in her. But also saddened by the looks of pity in the older kids' eyes and the mom who told her kid to "stop it".

I struggle, especially with her starting kindergarden in a couple of weeks, with how to help her. Help her with what I'm not sure. Maybe being assertive. Maybe not being shy or withdrawn..fearful, ashamed.

I fear the day she understands what pity is and when she sees it in others eyes. I hope that I have laid a sturdy foundation that helps her become that confident, assertive kid. One who is not afraid of the stares, the questions. One who doesn't try to hide her scar. One that can handle when she might be left out, made fun of, pointed at, whispered about.

I found another adult living with congential heart disease. It is so comforting to find these adults that blog about growing up and how they dealt with these very same things I'm worried about. Amy is an adult with CHD and when I was writing this post I stumbled across her blog and read this entry Scars and Stares. She wrote about the stares and whispers and how she handled it as a kid growing up with a scar and with a bad heart. So it gave me hope that Jilly will handle this issue in much the same way as Amy - with pride.

Fly Away

2009-07-22T18:49:00.000-07:00

There is this song that Jillian learned for her pre-school graduation.

It's a cute song but when she sings it the words take on so much more meaning for me.

Only her and I are home tonight so we had dinner together and were chatting. She is currently very much into the movie Annie so she was singing me the song "Tomorrow". (Probably the cutest thing ever)

After she sang that song she ran into the bathroom and grabbed me some tissue. When she handed it to me I asked her why she was giving me tissue. She said because she was going to sing that song that always made me cry. And then she sang........

"1,2,3 like a bird I sing

Cause you're giving me the most beautiful set of wings.

I'm so glad that you're here today

Cause tomorrow I might have to go

and fly away.

Fly away...fly away

Fly away...fly AWAY!"

Gets me everytime.

Update

2009-07-16T20:14:00.000-07:00

It's been awhile. I was in Portland for 4 days with Mikayla for a soccer tournament. Even though I missed Jilly (and Russ and Haley) it was a nice, relaxing time away. As soon as we returned Sunday night, we re-packed and left for a family camping trip for 3 days. We returned yesterday afternoon - Russ ran off to a football scrimmage and I was back to running the girls around to soccer.

My summer vacation is winding down. After this week one more week to go. And nothing exciting to look forward to. Mikayla is leaving tomorrow for a week in Mexico with her best friend's family. And I will probably sit here worrying about her the whole time.

In my quest to help Jilly spread her wings I am signing her up for swim lessons (always meant to do that anyway, just was slacking on my part) and she wants to play tennis at the moment. So I will look into tennis lessons and am still planning on her taking piano this fall. My poor piano sits there with nobody in this house who knows how to play it. So Jilly will be my musician (I hope).

Have a check list before Jilly starts kindergarden - one being to get her medical bracelet. Her PC and pediatrician both suggested I get this a long time ago but again, slacker. So I need to do that. And I talked with the school nurse about her emergency care plan and she will be setting up a meeting with all sometime in the next couple of weeks.

And then the real test will come of my letting her fly on her own. She's up for it, I'm sure. I just need to get myself ready for it. It's not easy.

Happenings

2009-07-07T20:27:00.001-07:00

My summer vacation is winding down. Only 2 more weeks left :(

We are going camping soon. It will be Jilly's first camping trip. So she has been very excited about it. So in anticipation of our camping trip she wanted to have a mini camp out in our backyard.

Here's Jilly camping out in our backyard

And here she playing cards with Haley, Mikayla and a friend of Mikayla's

For the 4th of July weekend we went to our cabin for 3 days and had a nice time as usual.

Russ and Mikayla taking a break from a heated game of liar's dice

Mikayla and a friend taking Jilly swimming

Jilly trying out her new equipment

If you notice that Haley is absent from our cabin photos that is because she is spending 2 weeks at her Grandma Lori's house getting some much needed attention and having a blast. I miss her like crazy.

Difference in Opinion

2009-07-02T12:22:00.000-07:00

Jilly had her 6 month cardiology check-up on Monday.

Interesting. Very interesting.

No, no, no...don't get any bad thoughts. The check up was all good. Heart function is strong. No leaks. He kept saying her heart looked very good.

Yes, I said he. She saw Dr. R instead of Dr. H.

I get the funny feeling she may be seeing more of Dr. R. Just my hunch. Nothing specific was said.

But what is interesting is the fact that I could ask 10 different doctors their opinions about activity and what not for Fontan patients and they will all give me a different answer.

Dr. H., as I mentioned before, is very cautious in her approach to Fontan patients. Wants them to live life but didn't recommend Jilly go to higher elevations for very long. Not big on the whole running a lot. Was not too comfortable with her doing team sports and if she did only at a young age when I can supervise.

So this Dr. R. He says to me..."let her do what she wants. If she wants to play soccer let her play soccer. She needs to learn to self monitor. Let her have fun and be a kid. Don't make her a cardiac cripple". Good advice indeed.

He told me a story about a patient who had a care plan that limited all activity, including lifting anything over 5 lbs. His response was that a milk jug weighs about 6 lbs, so was this boy unable to pour his own milk? His point was to let her live life on her own terms.

His recommendation for her care plan for school? No activity limitations. Let her rest when she wants, let her have plenty of water, but let her play and have fun.

I also asked him about the higher elevations, something Dr. H. had always told us to be conservative in our time in the mountains. Dr. R. said he has Fontan patients that ski, hike, mountain climb. His advice? Go for it. If it's too hard on her heart, you'll know and then you don't go that high.

So we are going to take up hiking again. And trips to Tahoe. And family trips back to Yosemite. See how she does.

Let her run. She'll hike. She'll climb mountains if she wants to. She'll figure it out. Dr. R's thought was that he doesn't want his Fontan patients to become sedentary. He wants them active. He explained that with her passive blood flow the stronger her other muscles in her body are - such as her legs - the easier it will be for the blood to get where it needs to go and her heart to not have to overwork itself.

One word of caution. Water. Hydration. That seemed to be his only caution that he wanted to make sure her school lets her have access to a waterbottle at all times. Because with her circulation she can become easily dehydrated and if she does it's very bad for her heart.

Makes sense. Although I am still having a hard time with the whole letting somebody else be in charge of making sure she is getting enough rest and enough water and listening to her when she says she is tired.

He also addressed the issues of services for any delays she might have. I told him that she was evaluated for speech and didn't qualify. I also told him about my concerns with her gross motor skills. I explained that it has nothing to do with her heart and being tired. That physically her legs just don't move like other 5 year old - she can't run as well, as fast, or as coordinated. I also told him that in both cases with being evaluated I was told that she would catch up, give her time.

That seemed to strike a nerve. Dr. R said "Don't ever let somebody tell you to give her a break because of all she has been through, that she'll catch up sooner or later" Dr. R. said that in giving these kids a chance at life they deserve to have whatever services we, as the parents, feel they need. That if they don't get these services the reality is they may never catch up.

Good advice once again. Because I have mentioned many times that I have gotten more times than I can count the ole..."she's been through so much, cut her some slack".

I like Dr. R's thinking. A little scary. But I like it.

So now I must give Jilly the room to spread her wings. Let her fly. And hopefully she will soar to great heights.

Care and Planning

2009-06-25T16:57:00.000-07:00

In the middle of sorting laundry I get a phone call.

It is the school district's nurse. She is calling me about Jillian.

Jillian's registration for kindergarden has been flagged because of her health history. It's routine. I was expecting to talk with the nurse for some time now.

But as always, I guess I wasn't ready for it. I never am.

She has to write an Emergency Care Plan for Jillian. So we discussed her cardiac issues. Her needs. Her limitations.

This lady was an ICU pediatric nurse in a previous life so she was somewhat familiar with most of what I was explaining in regards to single ventricle, profusion, fontan circulation. That's helpful.

And as Jillian's mother one would think I would have the answers for all of her questions. But I don't.

Because I don't always know the question. How can I have the answer if I never even thought of asking the question.

It is good timing that she called when she did. Jilly has her 6 month cardiac appointment on Monday. So I will take the care plan with me and go over it with her cardiologist.

And ask the questions I never thought to ask.

As the nurse and I talked I heard myself explaining Jilly's limitations as I understand them. And it made me sad.

She'll be different.

Her PC doesn't want her to have to participate in PE after kindergarden. At the school she goes to they run the track for PE. They seem to do a lot of running at that school (the older girls went there). Could be because of budget cuts and no PE teachers - but that's a different post for a different day.

Anyway, her PC doesn't want her to have to run because she's afraid who ever is supervising won't be cautious of her condition. That if Jilly says she's tired they might not listen. They might try to push her - in a good sort of way - but pushing her nonetheless. Other activities ok - with caution. I think she errs on the side of caution - which I can't complain about.

But it makes her different.

Her school is small enough that most of the teachers there already know her or know of her. So I'm not worried about that. Just worried in general.

It's hard to be one of those parents you read about who maybe their child was born without and arm - yet that parent never let them use it as an excuse, pushed them to be the best that they can be and never let them think they had any limitations. I just want to protect her. Insulate her.

But I know the healthy thing is to let her live life. Let her try things. Let her push herself. And stop worrying about her succumbing to her disease.

The nurse emailed me a draft of the care plan. It's pretty standard.

Until you get to the part about in case of cardiac arrest. About what to do if she needs CPR. Sternum wired shut. Coils in heart. Passive bloodflow.

So the nurse and I will meet with her team at school - teacher, partner teacher, secretary, principal. Thankfully most of these people know about Jilly or have met her. They know that to look at her is to see a normal little girl. Otherwise I would think they would read her care plan and be scared to death of having her in their class.

And I reassured the school nurse that all the precautions, signs of distress, symptoms to look for that her doctor listed have not occured - ever. They are just that - precautions and things to look out for. That she has been a very healthy little girl aside from her heart.

Don't be scared. Just protect her.

Visits

2009-06-20T13:20:00.000-07:00

This past week has been pretty amazing. Meeting people who are my family for the first time ever. Finding out who I look like. Really liking these people. All pretty cool.

me, my mom and my sister

meeting my sister for the first time

We've gone to the zoo with the kids, wine tasting and had a wonderful dinner up in the hills last night. Pretty incredible.

Now the next picture has nothing to do with anything but I wake up to this often - instead of people out for their morning jogs this is what I see......

And then no update could be complete without a silly picture of Jilly......

Summer Vacation

2009-06-11T17:15:00.000-07:00

A little late but....our summer vacation has started. The last day of school was a week ago. The girls are home. I am home. Russ is home. How much longer until they go back to school?

No big plans for us this summer. A few soccer tournaments. Visits in Oregon. Gardening. Home improvements. Laziness.

And the meeting of the family. Mom and sister coming out to meet me. I'll share more later.

For now, enjoying this very mild weather. Rain in the forecast for the next three days. Is it June?

Lion King

2009-06-08T21:02:00.000-07:00

Random trivia about Dina............she's a musical geek. I love musicals. I love to sing songs from musicals at the top of my lungs. I can break out in a rousing rendition of "If I were a rich man..." When Chicago came out in the theaters I was one of the first ones in line to buy a ticket. I have had season tickets to Music Circus.

One day, when Jillian was in the hospital, I was having a very bad day. She was having a very bad day. I had been crying most of the morning. Haley was with me so she was having a bad day too. I took her down to the playroom and was irritated that there was something going on that day and she wouldn't be able to play. I took her back to her dad and sent them to lunch. I then wandered around, needing a break from the sadness that I was feeling in Jillian's room. I wandered back down by the playroom and stopped to see what was going on.

There was a teenager who was on his 6th round of chemo for his cancer that had come back. I believe that it may have been terminal. He was from Reno. He was involved in theater. He had written a letter to somebody asking if the cast from the Lion King could come visit the kids at UCSF. And there they were.....the cast from Lion King!

They were talking with kids and passing out Nala and Simba dolls. And then they sang.

They sang this song.

http://www.youtube.com/watch?v=eipUFAgbzzw&feature=related

It made me cry and gave me chills. One of the nurses from Jilly's floor asked me what was wrong (besides the obvious). I told her that I love musicals and their singing moved me.

I went back up to Jilly's room and was sitting in the rocking chair holding her on a pillow. She was very sick. It was a day that I had been feeling as though we were loosing hope.

Then the cast walked into her ICU room. They were on the floor passing out dolls and softly singing.

But they came in and told me that they had heard I was a lover of musicals. I told them yes, that their singing downstairs had moved me. One of them said that yes, she had seen me standing in the back crying. So she sang me some of this song.

http://www.youtube.com/watch?v=w6OnzytMzL4&feature=related

And I bawled like a baby. This song is about going on a journey, not knowing where that journey is going to lead you but always knowing your family (pride) will be there. And that's a little of what I was feeling that day. Being on a journey that I had no clue where it was leading me and how I was going to get back to where I wanted to be....home.

Here is the cast with me in Jilly's ICU room. They were the nicest people. They actually sat with me for a short while and talked, asked me questions about Jilly. Tried to give me a little comfort. It turned out to be a very special day for me.

The reason I am posting about this is that the Lion King is currently playing at the Convention Center here in Sacramento. The summer after Jilly was released from UCSF the Lion King came to Sacramento for the first time. I took Mikayla and Haley to go see it.

It was absolutely amazing. I think that I cried through the whole musical. I had chills the entire time. It quickly became my all time favorite musical. The sets are stunning. The animals (you can see them in the first video I posted) walk up and down the aisles. It is just awesome.

It plays her in Sacramento until June 28th. If you ever have the chance to go see it, you should. You will never forget it.

A graduation

2009-05-31T19:22:00.000-07:00

Today Jilly officially graduated from pre-school. She goes to a small preschool that was built at the back of a house of a good friend of mine. Her daughter and my oldest daughter have been friends since 3rd grade. Jilly has gone to this preschool since she was 1 years old. It has been the most wonderful, loving, nuturing environment for her. Even though she is graduating she will continue to go there when she starts kindergarden after school.

Jilly waiting to sing

A future american idol?

Jilly waiting to march up and get her "diploma"

One of the most wonderful things about this preschool is all the wonderful and creative things they do with and for the kids. Jilly is carrying her portfolio. More on that in a minute.

Singing another song

The throwing of the hat

Our family with the happy graduate

Her favorite people - Alicia, Lisa and Michelle

Our baby

After we came home from her celebration Jilly took a long nap. She was exhausted from the past two days - her birthday party was yesterday but I'll post more on that another day.

As she slept I sat down to look through her portfolio. Within seconds the tears were falling. Lisa took such care making scrapbook pages of their adventures during her 4 years there. Pictures documenting accomplishments, silly activities, field trips, crazy hair day, special friends. Looking back at the pictures I was so proud of my Jilly but also sad. She has grown up so fast. I sat there wondering where the time has gone. There were samples of her scribbles when she was 1, her attempts at writing when she was 2, coloring inside the lines for the first time, her attempt at writing her name, charts showing her progress, funny things she has said over the years. I will cherish that portfolio forever.

I could not have asked for a more loving, secure environment for her. I could not have asked for 3 more loving women who love my daughter fiercly and protectively.

Congratulations Jilly. On to our next adventure..................kindergarden!

Happy Birthday

2009-05-26T22:32:00.000-07:00

Today was Jillian's 5th birthday. I can't believe it's been 5 years. She is growing up so fast. She keeps telling me now that she is 5 she can do everything by herself, because she's all growned up, you know.

I found her on the counter digging in to her cake

This is what the cake looks like now

playing a game of princess fish with daddy

I am so proud and in complete awe and admiration for my little one. To watch her today brought tears to my eyes when I think back 5 years - wondering if we would even make it to her 1st birthday. My hope for her on this day is that she continues on this path of good health, happiness and many, many, many, many more birthdays. She's the best.

All grown up

2009-05-25T13:16:00.000-07:00

Jilly is graduating from pre-school!! Doesn't she look adorable in this picture? Her pre-school is having a graduation party on Sunday and the graduates sing some songs for the parents. Jilly informed me the other day that one of the songs they are singing is "you are my sunshine". Great. I'll be the parent in the back sobbing.

But I have to say that with each new milestone that she reaches I am just so thankful that we are all here to see her through them. She is such a miracle.

Bits and Pieces

2009-05-23T14:30:00.000-07:00

We've been oh, so busy 'round here. Haley has been at the county fair for the past 4 days. She showed her sheep. Did very well. Second place in market (means her sheep will make tasty morsels for somebody). Last year she did not do well in showmanship - got frustrated, didn't practice. This year she placed 7th out of 22. Which is a huge improvement. Auction is tomorrow. Today Haley decided she wants to be a vegetarian. Which kind of goes against the whole raise a lamb to go to market to make money to put in your college account. I'm finding it kind of humorous. She printed out a flier that had a picture of a pig and said "Don't eat me".

If you have time this weekend and live anywhere near Sacramento you should head on over to the county fair at the Cal Expo fairgrounds. I took Jilly yesterday afternoon and she rode some rides and had a great time looking at all of the animals. We'll all be going again tomorrow since Haley has to show the lamb in auction. Then the girls can ride some rides, eat some fattening food (no meat for Haley) and have a good time.

Tuesday is my babies birthday. She'll be 5!!!!!! Of courseI'll post some pics here soon. And we are off to a big block party to celebrate Russ' sister's 30th birthday.

Comfort

2009-05-17T17:27:00.000-07:00

There are certain smells that remind me of my childhood and I find comfort in them. Fresh cut grass, crisp spring mornings, chlorine, 7-up.

There are also certain things I find comfort in and I'm not so sure why. Curling up with a pillow a certain way, a touch on my arm, old songs.

Especially old songs. There are many old songs that I'll hear somewhere that take me back to a time with my dad. A special time. A special memory. Sometimes I don't even have a memory to relate to the song, but I know it's a song that my dad may have sung to me, even though I don't remember him singing it to me, but it evokes a nostalgia in me that I find comfort in.

When Jillian was in the hospital when she was an infant there were many times that she was inconsolable. When she was going through drug withdrawal. When she was in pain. When she was so sick we thought we were loosing her. There were times that I couldn't find anything to help her, to make her stop crying or moaning. Sometimes I couldn't even hold her depending on what machines she was hooked up to or how sick she was at the time.

I tried many different things. Touching her, stroking her face, whispering to her, rocking her. Nothing worked. Then one day I sang to her. I sang very softly into her ear "You are my sunshine". And the very first time that I sang it to her, at a time she was going through drug withdrawal and very irritable, she stopped fussing. Her little body relaxed. She seemed to melt into me. The nurse even asked me what I did. Nothing had helped. I just shrugged my shoulders.

I tried singing that song again and again. And more often than not it soothed her. It comforted her. I would always sing it very softly in her ear. Sometimes I would just hum the melody. And she would relax. Her body seemed to sigh a soft sigh and sink into me.

The nurses always just assumed that it was because she was with her mommy. But when I would try to soothe her other ways it never seemed to work as well. And the nurses would comment that maybe she was extra cranky that day. But as soon as I would start singing that song she would quiet. And then they would ask me what I did.

I never told them. Because I wasn't always there with her. I wanted it to be my special "thing" with her. My special way of comforting her since I couldn't take her pain and suffering away. I liked to believe that even if they sang it to her she wouldn't find the same comfort in it that she did with me - but I wasn't willing to risk it so I kept it a secret. I don't think I even told Russ until maybe the end of her hospitilization, or maybe even until we brought her home. I didn't want him singing it to her either.

Of course there were other things that soothed her at various times, mostly drugs. And I'm sure when I wasn't with her the nurses and her daddy found things to comfort her with. But I wanted that special time with her, that special something that she shared with only her mommy.

Over the years, especially when she first came home, I would sing that song to her. And it seemed it always relaxed her when I felt like nothing else was working.

I had not sang that song to her in a long time. A few weeks ago she was being somewhat of a terror. She had been throwing tantrums and I put her to bed. She was whining after a long bout of crying at the top of her lungs.

I softly started singing that song. Very quietly at first so that she had to be quiet to hear me. She instantly quieted down and stared up at the ceiling. I was singing softly in her ear. She turned to me and put her hand on my cheek.

The next thing she said startled me.

"I remember that song mommy"

I said "you do". She said "yes". She said "that song makes me happy when you sing it to me".

After she closed her eyes and appeared to be falling asleep I stopped singing. She reached up to my cheek with her eyes still closed and said "hum it mommy". So I did. She curled up into me and it felt as if her little body melted into mine.

She found comfort. And maybe, just maybe, she remembered the comfort she found in my special song to her all those many days in the hospital......a long time ago.

What a day

2009-05-10T16:15:00.001-07:00

What a great day.

Mikayla made me a spinach and mushroom omelet that was delicious. I got to drink my coffee and read the paper in a relatively calm house.

We then had brunch with Russ' family.

Because I like to read and spend so much money on books Russ got me the amazon kindle. So I am spending the rest of my afternoon playing with it and trying to figure out the technology behind it.

I have the best family!

Happy Mother's Day

Hello

2009-05-09T16:24:00.001-07:00

Hi there.

No updates are good right?

Not so says my husband. He needs something to read.

Things are good. School is winding down. Girls are good.

Jilly is wonderful. A bit on the difficult side at the moment. But I'll take it.

Weather is beautiful.

Looking forward to a quiet day tomorrow.

I'll take some pictures and let you all see the three beautiful reasons I get to celebrate Mother's day.

The Questions

2009-04-28T09:28:00.000-07:00

Four year olds ask questions. They ask a lot of questions. Questions that I just sometimes don't have the answer to. Like why does Scooby Doo talk but Charlie (our dog) doesn't? Why are some people mean? Why do I have to grow up?

Many of the pressing questions Jilly asks I can make up some pretty funny answers that seem to satisfy her. Or she just rolls her eyes and tells me I'm silly.

But lately there has been more and more questions and comments about her heart.

Like....."why is my heart broken?"

How do you answer that question?

I've come up with some various explanations that a 4 year old can comprehend. But the question continues. It is like she knows more, she knows I know more. That old soul in her has figured out that there is more to the story and she wants answers.

She asked me just this morning "Mom, do you have a big heart?" I showed her how big my heart is with my hands. She put her hands together and said "my heart is about this big huh?" And I said yes. Then she said "when I was a little baby it was even smaller huh?" And I said yes, it was smaller. Then she went on to talk about where her heart is in her chest. She got concerned there for a minute because she couldn't find it. So I showed her where it is and she felt better that she had found it and it was still "bump, bumping".

Later, on the drive to school. She said "Mom? My heart is fixed right?" Again, how does she come up with stuff and how the hell am I supposed to answer her? So I said "yes honey, why".

"cause the doctor used my zipper to get in there to fix my heart....and my heart is so little.....how did he fix it?"

So I said the only thing I could think of at that moment....I said "very carefully".

That satisfied her for a moment.

After thinking for a bit she said "well that's good, I wouldn't want him to break it more."

Me either baby, me either.

Differences

2009-04-16T19:34:00.000-07:00

Jilly: Why do I have this thing on my chest

Me: Your zipper?

Jilly: Yeah, my zipper. Why is it there?

Me: Because the doctor used it to get inside you to fix your heart.

Jilly: Well, I don't want it.

Me: Why?

Jilly: You don't have one.

Me: No, you are right, I don't have a scar like you.

Jilly: I don't like it. Noone else has it. I don't want it. I want to be like you, and daddy and Cocoa, and Haley and Buster and Charlie and Rooney.

Mikayla (who was listening from the couch) But Jilly, I like your scar. It makes you special.

Jilly: Well, I DON"T!!

Me: But Jilly, if you didn't have your scar then that would mean the doctor would not have been able to get inside of you to fix your heart and then you would be really sick all of the time.

Jilly: Oh..........like my heart inside my blood?

Me: yes

Jilly (quiet for a minute) : I would be sick like this- cough, cough, pant, pant, moan, groan?

Me: Yes

Jilly: Ok then, I guess I'll keep my zipper.

Happy Day

2009-04-12T19:41:00.000-07:00

Happy Easter from the Sommers Family! Hope everyone had a nice day. We did.

And whose birthday was yesterday.......................

MINE!!! 41 years old....Ack!!

I had a great day. My family took me out to dinner.

Me and my wonderful hubby

Me and my girls

The ending to a nice dinner....we are probably the family you don't want to sit next to at a restaurant.

Spring Break and a Birthday

2009-04-11T11:27:00.000-07:00

Guess who's birthday it is? Not tellin'.

Had spring break this week. Nothing really exciting to report. Weather was horrible. Jilly and I went to the movies, went to the park, went to the library and she got her own library card, spent some fun time together. Mikayla chose to be a teenager and hang out with friends. Haley kept busy with what? I am not sure.

We did go bowling though. Had a fun time.

Haley getting ready to throw a bowl and Mikayla watching her ball roll

Russ and Jilly watching a bowl roll and Mikayla's awesome bowling moves

Russ and Jilly talking bowling form

And this is what Jilly does when she has to sit between the girls who have their ipods in their ears and singing out loud. I do it to.

So whose birthday is it? I will post pics later and let you know.

Profound - not

2009-03-29T18:18:00.000-07:00

I notice that I have not been updating lately. I notice that the posts I do update with are sort of boring. I notice that I have not graced my blog with some of my usual meanderings of my thoughts and feelings.

Oh, I still have all those thoughts swirling in my head. And I often think of subjects I want to write about related to Jilly and her heart - but I just haven't. Maybe here soon I'll get over my writers block and have a really profound thought come pouring out into this blog.

But for now just updates to satifsy your curiousity and the comings and goings of my favoritist little almost 5 year old.

I didn't mention that Russ and I went to the American Heart Association's annual heart ball. A local heart family that I have met a few times talked about their son. Russ' sister now works for the AMA and helped organize this ball and his father is now the chairman of the board. Of course this ball was much less emotional than last years. And of course I didn't take any pictures.

Jilly goes in the morning to the handsome dentist to get the rest of her fillings. I am going it solo. I can do it.

Other than that things around here are status quo. Which is a very good thing.

****To see handsome dentist go here. If you ever need a pediatric dentist who is very experienced with cardiac kids try him. He's great.

All is Well

2009-03-22T18:27:00.000-07:00

Jilly went to the handsome dentist this past Wednesday. She did great! Russ went so he could sit in the room with her because we all know around here who the calm one is in situations like this...and it ain't me.

As you can tell by the picture she got her gas and did just fine. She only cried at the end when the gas wore off and she felt the numbness in her mouth.

The gas must have made her tired because she took a 4 hour nap afterwards.

He was able to fill two other fillings. We go back next week to fill the rest of her cavities. I think I can handle the next one on my own.

Slacker

2009-03-12T19:23:00.000-07:00

What craziness around here. We've had something going on every night this week. I'm sitting here on the couch for the first time in a long time. School functions, high school soccer games, etc. etc. On Monday night Mikayla recieved and academic award for her high GPA. What a good kid. Haley got her lamb tonight. She's sitting out there in the middle of the pen right now letting the lamb get used to her. And Jilly is laying here right next to me - we have been missing each other since life has been go, go, go.

She met with the pediatric dentist last Friday. The appointment went well. She went right back with the dentist. She loved the t.v. monitors in the ceiling and he had a fish tank that had a Dori fish and a Nemo fish - she thought that was pretty cool. She has a LOT of cavities and I felt like a horrible mom. He reassured me though, since I have bad teeth it could be something she's stuck with. He also reassured me that he did a majority of his training in a children's hospital and worked with a lot of cardiac kids. He was very nice and very easy on the eyes if you know what I mean ;)

One of her cavities is severe enought that he has to do a procedure that's almost like a root canal. And she gets some bling. It will be capped with a silver cap. I asked about just pulling the tooth since it's a baby tooth but it's a tooth that won't fall out until she's at least 10. If he pulled it the other teeth would crowd the space and the adult tooth would have difficulty fitting in. He said I could sit in the room during the procedure but I told him that it would probably be best if I sit in the waiting room. I'm already anxious about the procedure. It's reassuring that he's worked on cardiac kids before but I'm still really nervous.

That will be next Wednesday. Lots of time to get myself all worked up before then.

Roller Coasters

2009-03-03T19:33:00.000-08:00

This journey with Jilly is full of ups and downs. There are highs like no other then lows that can leave me breathless, weary and worn.

One of the things that has always given me a low is not knowing what the future holds for Jilly. The Fontan is a relatively new surgery that has been tweaked and slowly perfected over the past 20 years or so. The oldest person I know of that has had a Fontan was in her early 20s. Everytime I thought of the future for Jilly it always seemed to end around 20. I don't know why, but that age just seemed to be the goal. If we can just see her through till she's 20. If I just get to have her in my life until she is 20. 20 years are better than no years.

I stumbled upon a blog of a man named Paul who is 36 and currently waiting for a new heart. He had the Fontan back in 1987. And from what I can tell reading about his life he has had a full and rewarding life. He's so upbeat and optimistic. And even though he is waiting for a heart - he's 36!!!!! It gives me a new benchmark. 36 is a lifetime. Paul give me hope for Jilly. And there's the high - hope and optimism.

Then the low hits. Another blog I somehow came across was that of Gracie - a HLHS baby. She was listed for a new heart and three days later recieved one. But her new heart didn't work. She passed away last night. Reading her families journey was inspiring but heart breaking. Her parents gift with words mesmerizing. Her parents decided to pay it forward and donated her organs. Which meant they could not hold her as she passed. Her fathers last post made my heart ache. Such is being a part of this wonderful, amazing yet sometimes gut wrenching, difficult, emotionally fragile club.

Even though I have read many stories of heart families that are sad and my own story has it's fair share of emotional ups and downs I am a better person for having traveled this journey.

Lazy Daisy

2009-03-01T21:14:00.000-08:00

The weather is horrible. We have been very lazy around here. Most of the weekend has been spent doing a whole lot of nothing. Jilly has come down with some kind of virus today though. Has had a fever off and on all day. I have been summoned all day into my bedroom where she is holding court in my bed, watching movies, drinking lemonade.

Here are a few pics from this past week.

Jilly and Daddy hanging out reading

Giving her favorite dog, Buster, some love

I was in the other room when Jilly bellowed from the living room in a very superior voice, "Mommy!". When I came in I saw that she had put her Dora chair into this chair and said in a very Queen like way "Hello Mommy, I am the Queen." We are doomed.

Some Pics

2009-02-22T09:34:00.000-08:00

We leave our reguraly scheduled programming of anxiousness, worry and fret to bring you happy.....

Jilly finally mastering the balance beam...all by herself!

And then a few pics from Vegas:

The girls walking the strip and seeing how many "girlie" cards they could get.

Mikayla and mom at New York, New York casino - just before she went and rode the roller coaster - it was cold in Vegas!

Stress

2009-02-19T10:03:00.000-08:00

As I mentioned in my last post Jillian has a cavity.

Add to my list hurdles jumped in our new dealing with a child with a heart defect world.

It would seem like a small hurdle. Have a cavity. Get it filled.

Not so with a kid with a heart defect. Her cardiologist also wants her on a heart monitor and pulse ox monitor during the procedure. Our dentist doesn't have those things.

They gave us a referral to another dentist who has those things in his office. He wants to do a consult with us first before he agrees to do the procedure. Kind of like he gets a choice. I totally understand. I wouldn't want someone to work on her who didn't feel comfortable.

But what about Jilly? She needs a cavity filled. Having a cavity as a cardiac kid isn't good. Risk of infection going to her heart and so on and so forth. She doesn't get a choice.

I couldn't go to sleep last night. I started worrying. I am looking for referrals from other local heart mom's. But I started worrying about going to some other dentist. Who maybe hasn't worked on a heart kid before. Wonder if something happens. Is the nitrious oxide safe? Will she be ok?

I get tired sometimes of having to take all this on. The worry. The advocacy. The fact finding. Am I asking the right questions? What are the right questions? Who do I turn to? Who do I trust? Who, besides me, is making sure we are doing the right things?

I sit and wait. Wait to find out if this dentist wants to take on my baby with the broken heart. Wait to find out if there are any dentists around who have filled a cavity on a kid with a Fontan circulation. Can't ask her cardiologist now because she's out of the office until March 2nd.

So what about Jilly? What about what she needs? She doesn't have the luxury of opting out of dealing with her CHD. She doesn't have a choice.

Wouldn't that be nice if she did?

UPDATE - so I talked with our dentist's office and got more information - she apparantely can have the numbing medicine (not called Novicaine anymore) even thought it has ephiniphrine in it - see, I didn't know that - and it's usual practice with dentist's to give that in addition to the nitrious oxide as a calming effect - didn't know that either - and the cardiologist wants her monitored because of the epinephrine. But I didn't know what to ask - so once I muddled through what it was I was trying to figure out we got to the root of what I needed to know. So I am more informed but still feeling stressed. She has an appointment with the dentist they referred me to on March 6th. Hopefully it will all work out and I stressed unneccesarily - which is pretty common around here.

On a Jet Plane

2009-02-13T16:51:00.000-08:00

Leaving for the airport in a few minutes. Mikayla and I are taking off to Vegas for the weekend for a soccer tournament. Weather is supposed to be cold and rainy (how is it kathy?) and I don't gamble. So maybe I can just stay in the hotel room and relax.

Jilly had a dentist appointment and she has a cavity. Not good. Her cardiologist wants her hooked up to a heart monitor and pulse ox as she can only have nitrous oxide- her dentist isn't equipped to do that - so we will have to look around for someone who can.

Will update with some pics when we get back.

Nutrition

2009-02-05T20:58:00.000-08:00

I'm starting this post off with some pictures of Russ sharing his brownie batter with the masses. Well, he wasn't really sharing it with the dogs. That would be bad for them.

But all of us in this family know who likes chocolate the best. Yes, it would be Jilly. She loves brownies, M&Ms and most things with chocolate. I've checked with her cardiologist and she's not worried about her eating chocolate. She said she would have to eat tons of it to have a negative effect on her heart (think caffiene). But I started thinking about her eating habits as it relates to her bad heart.

When she was younger she gained weight very slowly. She was never at risk of having a gtube or anything like that - we just needed to make sure she showed a steady gain. Her weight stuck at certain times - couldn't get it to go up and even lost a pound or two. And that's kind of where she's at now. She is not gaining much, but she's not loosing. She's been at the same weight for a long time. But she's growing. Her doctor's aren't concerned.

But her pediatrician would give us tips on how to fatten up her food. One of the suggestions was to butter up all of her food. And now she loves butter. Russ and I took out to breakfast a few Sundays ago. She wanted pancakes and eggs. When her breakfast came she picked up the little container of butter and asked what it was. When we told her she proceeded to pick up her spoon and eat a big spoonful of it and got mad when we tried to explain that it goes on her food. So she picked up her scrambled eggs, chunk by chunk of egg, and dipped the egg into her butter and ate it. Then licked the little container clean.

As she gets older though, I am sure we need to make sure she eats healthier. Eating spoonfuls of butter, I'm sure, can't be good for her heart. Her doctor tells me not to worry about that at the moment. Just let her eat what she wants, within reason, and make sure she is getting balanced meals, which she does.

I just want to make sure as she gets older she is able to make good choices about food and understand the reasons why she needs to eat healthy.

Because who doesn't like a chunk of egg dripping with butter.

Checking In

2009-02-01T20:24:00.000-08:00

Long time, no post.

Just don't have much I feel like writing about. But things are good. Jilly is good. A bruised mess. But good. Being on a blood thinner that poor thing bruises like a banana. Her gross motor skills are getting better. She's hopping around on one leg like a flamingo. Cracks me up.

Had a very nice visit with my "new" aunt. Went to a superbowl party today with some good friends. Russ has been a Steelers fan since he was a kid - so he was extremely happy today. And the weather is beautiful.

Will post more this week. Been in a funk and staying away from the computer. But I'll be back.

Jillian's Journey

As the Awareness Comes

Tags

Thankful Bounty

Smarty Pants

Something the Lord Made

Another word for Poop

Fierce

Never Grow Up

Upcoming

Another year

Hello World

Fragile

6-year-old awaiting heart transplant dies

Check Up

Warning

Check Up

EGHS Staff GQ 90's Routine (2011)

EGHS Staff GQ Current Routine (2011)

So Awesome

Proud Mama

Humbled

Gleek

This is What I think...

Happy New Year

Parenting CHD 101

Heavy

Other Pursuits

Can you Guess?

Heartwarming

New Read

Another sleepless night...

She's back...

She's in

It's that time again

Spheres

Dates

Bring it on

To Good To Last

Before My Heart Stops

Summertime

Nice to Meet You

Happy Birthday

Unexpected Reaction

Speaking Engagements

Out of the mouth of an oh wise one....

Happy Easter

Exhale

Slacker

Quickie

Courage

A New Year..Hopefully A New Perspective

Christmas done and gone....

Why Not?

Here I Am

Who Knew

Meltdowns

Catching up with Pics

I did it

H1N1 Vaccine

Bits and Pieces

Apple Hill Pics

If it makes a difference to just one..........

A Poem Found

Looking Grown Up

My Heart Sings

Beaches

Her first school picture

One week down....

Hitting Home

A birthday

Compassion, Pride and Pity

Fly Away

Update

Happenings

Difference in Opinion

Care and Planning

Visits

Summer Vacation

Lion King