Happenings

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

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

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

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

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

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

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!