Cruising

Dan and I are leaving this morning for our cruise!

We drove down to my mom's house last night and are leaving the kids here with them. We are driving down to San Diego and are leaving this afternoon for a four day cruise down to Cabo. This is a combination 30th birthday celebration for both of us and a rest/renewal getaway after our eventful summer.

We'll check in with everyone on Monday when we return!

Interesting Article on Vaccines

Strife over shots: Should our kids play together?

What this article doesn't mention is children like Drew (and other DiGeorge kids who read this blog), whose immune systems are too compromised to receive vaccines. We count on the rest of the population to vaccinate for their protection. So if someone makes the choice not to vaccinate, I respect that it is their choice, even though I disagree with it. What I would appreciate is the courtesy to let others know of their decision so that we can protect our children from exposure to potentially life-threatening illnesses. In a healthy child who is unvaccinated against chicken pox, they most likely will contract the virus if they are exposed to it. An immune compromised child exposed to the virus by an unvaccinated child or someone else, could get sick enough to require hospitalization or even die. So I do think it's my business to know who is vaccinated and who isn't. Then I can make my own decisions about who my child has contact with.

Darkness and Light

I was getting ready to write about our weekend (nothing too exciting, just a little shopping on Saturday and church on Sunday), but with the events of the past week nothing really seems important enough to write about.

I have heard so much bad news about people I care about, I feel like I can't take anymore. This week I have heard of three very young people who have received devastating medical diagnoses. A friend from my old lifegroup learned she has a very large brain tumor. She is 28. They don't know yet what they will do about it. An old college roommate has been diagnosed with an aggressive form of breast cancer. She is 30. She is undergoing chemo and surgery. A dear friend and heart mom has just learned that she has a brain tumor. She is still undergoing testing to determine what kind it is and how it will be treated. She is in her early 30's and is a mother of two young children, one with his own serious medical issues.

Then there are the heart babies. I learned from Jillian's blog about a sweet little almost 2-year old boy who passed away suddenly on Thursday. Five hours before he died his mom was writing about how he was signing to her and watching a movie. I have been following another heart blog about baby Johnathan. He is four months old and just had his second open-heart surgery. He had a couple of rocky days at the beginning, but seemed to have stabilized. Sunday morning I checked on him before church and I knew things were bad. I went to church feeling like I could not take one more piece of bad news. I opened the bulletin and read that there was a 17-year old boy who attended one of our outreach programs that had been shot and killed. I didn't know him. But I cried and cried. I cried for all the families that have lost children. I cried for myself and my fear of losing my child. I cried for all the pain and tragedy that goes on in this world. Sometimes it really feels too much to bear. When I returned home and checked on Johnny I learned that he had lost his battle with CHD's too. I am so very sad for his family.

But I had to get it together because I already had plans to visit Arianna and her mom in the hospital. She's the sweet little 3-year old girl who has been in the hospital for ten weeks now recovering from her Fontan. As I made the drive over to the hospital I prayed for everyone. I have a tendency to try to hold on to all these feelings and just take the weight on myself. I know that God wants me to bring it to him and that he is big enough to handle all of these things. So I brought him all my feelings, all my prayer requests and asked that he would give me his strength and help me to be a light in a dark place.

I had a wonderful visit with Bahar. We talked about how difficult it is to split your time between your sick child in the hospital and your healthy child at home. How a long hospitalization can stress your marriage and your relationships. How painful it can be to have friends that just don't know what to say so they say nothing. How difficult it is to be on top of the doctors, nurses, and staff constantly to make sure they are all communicating and doing the best for your child. How everyone tells you take time for yourself, but there really is no time to do that. How isolating it can be to be walking through the hospital corridors for weeks on end and as others come and go. After our conversation we went back to Ari's room and she was awake! I got to talk to her and hear her beautiful voice. She is such an amazing child. She was in a great mood and was so friendly. After all she's been through she is still just a happy little girl. I showed her Drew's scrapbook of his time in the hospital and she really liked looking at it. She pointed out the ng tube he had, just like hers, and when looking at a picture of him with oxygen told me "I don't have oxygen anymore."

I left the hospital feeling a lot better. Yes, there is a lot of sadness in this dark world. But there also is a lot of opportunity to bring light into the darkness. I think one way we can do that is by walking alongside someone, just being with them on their journey.

California State Fair

Yesterday was Fun for All Day at the State Fair. That meant that our group, Hearts of Hope, got free admission, free ride wristbands and early admission. A big group of us met down there, got a group photo in, and then we were off! It wasn't as hot as it normally is in August, but it was still pretty warm! We had only planned to stay for a few hours, because I am NOT a crowd person, especially with what I like to call "fair people." So we made sure to visit the baby animals, then the bigger animals, hit up the petting zoo, grab some fair food and go on a few rides. When all that was done it was about 2:00 and we used ice cream to bribe the kids to leave the fair. Four hours is just the right amount of time to spend at the fair and we had a very fun day!

Drew with a brand new baby cow

Ava petting a baby pig

Drew with a goat and a deer in the petting zoo. They kept trying to eat our shirts!

Mommy and Ava on the balloon ride

Daddy and Drew on the balloon ride

Drew sliding down off of Adventure Island

Enjoying some gelato on the way out!

It's been a while

It feels like it's been forever since I've posted something and there is so much to report. I'll try and cover it all in one post.

Medical News

• Cardiology-It's been about two weeks now since Drew has been taking lasix and aldactone only once a day. He seems to be doing well on this regimen. Dr. Parrish says he'd like to continue treating him this way for another month before we try to wean him again.

• Immunology-We made the trek out to UCSF two weeks ago for Drew's immunology appointment. I called last week to get the results of his labs and his CD3s (T cells) are 40%. While this is still nowhere near normal (which is what they told us at Stanford) this is the highest they've ever been. Yay! Still, no live virus vaccines until they are above 50%.

• Bills-We're getting more and more of them. We've now paid our $3500 maximum and just got another bill from Stanford for another $3500. I'm gathering my energy to start making phone calls to the insurance company this week. I dread it!

Activities

• Swimming-Drew finished his first two-week session of swimming lessons last week. He really made a lot of progress and even though I thought he probably wouldn't be swimming on his own until next year, now I think he just might pick it up before the summer is over. So I signed him up for a second session. Ava is taking a temporary hiatus from swimming lessons, but loves putting her face in the water and blowing bubbles and jumping into the pool, as long as it's her idea. She's killing me! I even got a comment from another parent today about how "comfortable" she is in the water. Argh! If only she'd take a little instruction from somebody!

• Biking-Dan and I were able to ride in the Tour of Napa Valley this weekend, thanks to Grandma Kathy coming over to stay with the kids. We went up with friends on Saturday and enjoyed winetasting and a gourmet picnic lunch. We stayed at the lovely Chateau and got up early to ride the next morning. Dan successfully completed his second century and I enjoyed a more leisurely 30 mile ride. We were riding among the grapevines in beautiful 70 degree weather and it was awesome!
  

My mental health
No post would be complete without me talking about my feelings and how I cry ALL the time! OK, maybe not all the time, but it sure seems to be frequent lately. For example, when I went to visit little Arianna in the hospital last week all I had to do was walk into her room before the tears started flowing. That can't be super helpful to her parents. Now, since I have organized the raffle to help her family with their expenses I am in tears nearly every time I check my email. But it's the good kind of tears! I'm overwhelmed by how many people are reaching out to this family. Almost every time I check my inbox there is someone--a coworker of her Dad's, someone who reads this blog, one of her nurses, a friend of her aunt's--writing to say they want to support the Torrentes. I am glad I am able to help coordinate the efforts of so many people who want to help, but just didn't know how until now.

Photos
Some favorite photos from the past week or so:

Dan nearly broke his toe when he dropped a cutting board on it. I got him ice and a beer to make him feel better, but Ava thought he needed her blanket!

Visiting my friend, Dee, and her sweet little baby, Calista, who are finally home after being in the special care nursery for over a week

Drew with his report card on his last day of swimming lessons

Grandma Kathy and the kids in the cowboy outfits she brought back from her trip to Arizona

Me and Jen ready for our 30 mile ride through the Napa Valley (no photo of the guys-they left way too early!)

Helping a Family in Need

Edited on August 19th-Prizes have been updated!

During Drew's recent hospitalization we felt incredibly loved and supported by friends and family. One of our friends organized a raffle to benefit our family and help with all the expenses associated with being away from home and living out of the hospital. Many of you actually donated items to the raffle or bought tickets to support us. We were so grateful to have so many people come together to offer us help in a real, tangible way.

So of course, I jumped at the chance to provide that kind of help to another family in need. As the new co-chair of the Hearts of Hope support group I am in charge of putting together a raffle to benefit the Torrente Family. Here is their story.

Arianna Torrente

Arianna is a sweet 3-year-old girl. She just had her third open heart surgery in June at Sutter Memorial Hospital in Sacramento. She has had lots of complications and is now in her NINTH week of hospitalization. Her parents, Bahar & Miguel, are from Stockton and have stayed with her as much as possible. They are living at The Sharing Place, which is family housing located right on the Sutter campus. She also has a six-year-old sister who is now staying with them at the hospital since Miguel had to return to work. This week her parents were told it might be another six weeks. That would be fifteen weeks living away from home, missing work, eating every meal out and still paying bills at home.

The Hearts of Hope Support Group would like to support this family by putting on a raffle. Raffle tickets are $10 each or 3 for $25. All the proceeds from the raffle will go directly to the Torrente family to help with their costs associated with this hospitalization.

Prizes are:

$50 Spa Finder Gift Card
$200 MAC makeup set
Haircut with Lindsay Sells of Joseph Anthony Salon
$100 Gift Card to Outback Steakhouse
3 decorative (empty) 1.5 liter wine bottles that have the Sacramento Kings logo etched on them
3.5 liter bottle of Penfold's Thomas Hyland Shiraz Vintage 2002
Dewar's logo golf bag

If you are interested in purchasing raffle tickets please contact Andrea Himmelberger at a_himmelberger@hotmail.com or 916-606-7180.

Two videos

Two videos for your viewing pleasure. The first one is Drew singing his little heart out to the theme song from Veggie Tales. After we taped Drew doing it Ava wanted me to take her video singing. However, she quickly changed her mind. Enjoy!

Odds & Ends

Last week the kids started swimming lessons. The first day they both had some problems with being "good listeners." The teacher offered to teach them privately for the same price. The next day it was just the two of them and Drew did much better. Ava cried the entire time she was in the teachers arms. The teacher offered to split them up again and teach each of them individually. The third day Drew did even better and Ava cried the whole 25 minutes of her lesson! We decided maybe we should wait to do lessons with her until next year. Drew is still a little fearful, but makes progress each time. I don't think he's very close to swimming on his own yet, so I am trying to decide if I should put him in another two week session or just wait til next year.

Drew swimming with his teacher

Ava enjoying not swimming

This weekend my cousin got married in Berkeley. The whole family was there so we drove out on Friday and joined in on the "rehearsal" dinner. My parents stayed with the kids so that Dan and I could go down to the bar and have a drink with one of my other cousins. Saturday morning I got to help decorate the venue while Dan and the kids went to the local mall. The wedding itself was fun and it was great to spend time with family, but it was also a little stressful trying to keep the kids entertained in a not-so-kid-friendly space. I can't believe this is the only picture I took all weekend:

Aren't they cute though, all snuggled up together in the hotel bed?

Today I took the kids to a fun park with a neat water feature. We brought picnic lunches and played in the park and got soaking wet. Here's the cutie pies saying "Cheese."

While it's wonderful to be doing normal things like swimming lessons and weddings and park days, it still feels weird to me. Maybe it's just that I haven't fully processed through our time in the hospital. Even though I've been waiting all summer to do fun, normal summer things, now that we're doing them, it doesn't feel quite right. I just feel different. I suppose I am different. I don't think I can explain it more than that and I hope it goes away soon. I guess we'll just keep doing fun, normal things until it does feel right.

596,114

That's how much our most recent hospital stay cost. Actually, it was $596,114.36 to be exact.

And that's only from 5-23 to 6-12. We didn't get discharged until June 27.

Thank God for insurance! If we had to pay 20% of that, it would be almost $120,000!

Drew truly is a multi-million dollar baby!

Appointments

Yesterday was a long day!

First Drew had a dentist appointment at 8:30. I knew he would probably not enjoy having to lay down while people wearing scrubs and gloves hovered over him, and I was right. He is so good though! He didn't like it and he cried (sometimes screamed) through his cleaning, but he did open his mouth when they told him to, held still, etc. When it was time for the exam he did much better, opening his mouth for the dentist to "count" his sparkly teeth. He was handsomely rewarded with a blow up dinosaur toy and dinosaur stickers. The best part of the cleaning is that they were able to get the iron stain off his teeth that turned them gray when he was in the hospital. Now they are bright white again!

We got home from that appointment at 10:15 and headed out to UCSF at about 10:30. Our appointment was at 1:00. So we packed lunches and snacks for the road and Drew was a very good traveler, spending most of the trip watching Veggie Tales and cracking me up with his rendition of the opening song. We got to UCSF right on time and saw a the doctor around 2. The immunologist specializes in kids with 22q and she normally doesn't have a lot of encouraging things to say. But this time she told me she was very impressed with how far Drew's come. He had his developmental assessment in April and Dr. Wara said that he scored about average for his age. She told me that this is much better than most of the kids she sees with 22q and that it is something to be really happy about. She said we can expect him to do as well as any other kid his age in school. I did ask about the funky immunology labs we got at Stanford. She said she could not think of an explanation for those "normal" results and she was very interested to see the labs from this visit. I told her I thought maybe they got his blood mixed up with another kid and she thinks that is quite possible. I'm still hoping it was an immunology miracle and his levels will be high enough that he can have his live virus vaccines, but I don't really think that is the case. We will see her again in four months.

We headed over to the lab and the phlebotomist is really good and always gets blood on the first try. I guess she had an off day though, because it took her two tries this time. Drew did really well, he definitely hated it, but he didn't scream as loud as he did at the dentist and he calmed down quickly. Afterwards I took him across the street to the gift shop where he picked a prize of m&ms. Then we began the drive home from SF in work traffic. UGH. Three hours later we were finally home!

Fairy Tale Town

Today we went to Fairy Tale Town with our Hearts of Hope support group and had a great time! We had 16 families (I think), which is the largest turnout we've had so far. Fairy Tale Town donated the passes to our group and gave us a discount on the lunches that HOH provided for everyone. The kids had lots of fun playing, climbing and sliding. And there was media coverage which is great for getting the word out to other families.

Here is a link to my interview with KFBK, a local news radio station. I actually haven't heard it yet, but I hear it was a good piece.

There was also a short story on the Channel 10 news at 5:00.

The most exciting part for me was watching Drew run around and climb the stairs by himself, without having to stop because he was breathing so heavy. This is still new and amazing to me since his last surgery. He went up the Owl slide 8 times in a row without getting tired! And he didn't spend any time in the stroller the whole time we were there. I am so grateful that his surgery was such a success!

Cardiology Checkup

Yesterday was Drew's cardiology check up with Dr. Parrish. He had an echo and did great. We always have Dina do the echo and she is so good with Drew! She has a little stash of prizes for the kids and he always picks a lizard. He also brought his Veggie Tales DVD and watched that during the echo. She was looking at his heart and saying it was amazing what the surgeons did. His O2 was an awesome 99%! Dr. Parrish says he's very pleased with Drew's heart function and that we can try to decrease the diuretics again. So we're back to lasix and aldactone once a day. I am suppose to call him in a week and let him know how Drew is doing. And our next appointment is not for 3 months!

Thursday is our next big appointment day with two appointments. First we have the dentist at 8:30 (don't worry, I remembered to get Drew's antibiotics this time), then we head out to San Francisco for his immunology appointment at 1:00. Should be a busy day!

Drew during his echo

Drew and Dr. Parrish

Happy Birthday Dan!

Yesterday was Dan's 30th birthday! He celebrated by getting up at 6 am, leaving the house at 7 and driving up to Tahoe. Then he and his buddy Pete rode their bikes the 74 miles around the lake! Six and a half hours later, including some breaks and a flat tire change, they were on their way back to Sacramento. When they got here we had some friends over for a backyard BBQ. The food was amazing, thanks to my cousin Heather and her husband John. We had tri-tip, corn/tomato/avocado/black bean salad, green salad with dried cherries & goat cheese, watermelon cubes with lime zest, roasted asparagus and lemon cupcakes with creamcheese frosting for dessert. The weather was a little warm, but everyone had fun watching the kids play outside and toasting with some delicious beverages.

Happy Birthday to the best husband and father of my children I could have hoped for! I love you forever!



Oh, but it doesn't end there.

It's always after a really fun day that something crappy happens at night. And so it was last night. My cousins spent the night last night after the party so they didn't have to make the drive home to Oakland. Around 3:30 am John got a phone call from Heather's brother. He said that someone had called him from Heather's phone and told him that they stole her car and her ipod. Heather & John called the police right away and then woke us up. Once we turned off the house alarm and went outside, we saw that the car was still there, but had been broken into. They did take the phone, the charger, and the IPOD. They also stole our mail that we hadn't picked up that day. So we filed another police report and were awake until 5:00 am. I'm starting to think our neighborhood isn't so safe...

When you least expect it

I have been sort of teary lately. Not for any particular reason, besides the obvious. But I just have tears at the ready. Anything remotely sad and there I go. Some of it has made sense. Visits to the hospital. Attending the support group meeting last night. And then today it was Costco.

I was having a conversation with the checker about renewing my membership. Apparently they sent out the renewal in May or June. Aha, that would explain why I may have missed it, we were a little busy in May and June. I told him my son had heart surgery. And the bagger asked if he was ok now. I told him, yeah, we were there for a long time and had lots of complications, but he's ok now. And he told me that he lost his beautiful sister to a heart attack. When I asked how old she was, he told me she was 7. I asked if she had a congenital heart defect and he said yes. They are from Ethiopia. They were trying to get a visa to come here and have surgery and she died two weeks before the visa came through. I told him I was very sorry.

And then I went on my way, trying not to cry in another parking lot! As much as I hate surgery I can't imagine not having that option. And having to watch your child die while you wait on paperwork to get her to a place that could save her. I just feel so grateful to live here and have access to the very best medical care. Tonight I stayed a little longer with Drew at bedtime. I let him fall asleep on me and just laid there for a while holding a miracle in my arms. And I thanked God for giving me this incredible gift.