Today we got to play in the snow with some friends. The weather was beautiful, sunny and in the 60s, so we didn't even wear jackets. The kids had so much fun climbing the hills and sliding down on their behinds. Drew was really impressing us with his endurance and stamina to keep climbing those hills. Incredible!

Eben, Jacob and Drew ready to sled

Keilani and Ava playing in the snow

Drew

Ava

When we got back from there it was off to see the doctor again. Drew hadn't had a fever since yesterday so we weren't worried about that, but still needed to recheck his blood pressure. It was fine this time, but it worried me that the doctor still wanted to see us. It turned out he just wanted to measure it himself and say he was sorry that he missed it the other day. We did a quick check with the pulse ox, mostly for curiosity, but also to get a good baseline and it was 98%. Incredible again! If it had said that a year ago I would have thought the machine was broken. Now it's normal. It just amazes me. It does seem that Drew is having a reaction to the vaccine though. First the fever and now his arm is all red and hot where the injection was. Poor guy.

As we were on our way home from UCD we were listening to the radiothon to benefit the Children's Miracle Network and the UC Davis Children's Hospital. I have to confess that I cry every single year listening to the stories of other families who have been there. So, I called them up when we got home and made a donation. I guess you could consider it an investment. :)

And then we went to Jimboy's Tacos for dinner because they are having a promotion to benefit the hospital as well, and our heart buddy Casey is the poster child! The radiothon ends on Sunday, so everyone go to Jimboy's tomorrow and get yourself a Miracle Meal!

Drew and his buddy Casey and his buddy Jimboy

Killer Cold Virus

As if I don't have enough to worry about with hosting Thanksgiving on Thursday, a Christmas Party on Dec 8, Drew's cath on the 12, choosing, buying & wrapping Christmas gifts, and my normal "what if's" now there's a killer cold virus making the rounds. Maybe we will lock all the doors and seal off the vents with plastic sheeting until cold & flu season is over.

Which reminds me, Drew was denied for his Synagis shots and the doctors are still working on getting it approved through the insurance company. I'm gonna have to call and check on that tomorrow.

Cardiology Appointment

Drew had a cardiology appointment today. I arrived in the office with my list of questions ready for the doctor. Dr. Parrish noticed as soon as he walked in and said "why don't you start asking me now (he was washing his hands) so I can start thinking." He's so cute. So I rattled off my list of "can Drew take this cold medicine, can he take airborne when he's getting sick, can you refill our lisinopril, what should his medical alert bracelet say, and don't you think a repair would be better than the Fontan?" His answers were maybe, yes, yes, ask Celia, and yes. So we talked about sending the results of his next cath to Stanford, as well as UCSF and the surgeon at UCD. If it is possible for Drew to have a two-ventricle repair, that is what we want for him.

At our last appointment we talked about scheduling the cath for early January. I asked Dr. Parrish if we could do it before Christmas so I am not filled with anxiety during the holidays. He said he would let UCSF know that we wanted to do it earlier and they would schedule it. A few hours later I got a phone call from them and we have scheduled the heart cath for December 12.

Other news? We increased Drew's sildenafil dose to 4 mL, three times a day (that's tid for all you medical types). We also learned that Drew will be getting his Synagis shots again this year. Unfortunately, that means shots every month from November through March. And he's big enough now to require a shot in each leg every time. It used to be recommended for heart kids under 2, but they have found that kids with pulmonary hypertension who are under 4 can get just as sick from RSV as kids under 2. I almost said no thank you, but he's in preschool now and will be exposed to lots of sick kids. And kids who get RSV really bad end up on the ventilator and we don't want that. Especially with surgery in the spring. So I reluctantly agreed.

I also asked the nurse about setting up a parent evening like the one we just had at Sutter. And about providing information to parents with a new diagnosis on the kind of support and resources that are available. She basically said that sounds great if you are willing to do it. Hmm...I would totally be willing to do that, but I don't know if it's the best timing with two young kids and heart surgery just around the corner. But it is something to think about.

My random thoughts

Well, we're all feeling better and eager to get out of the house! We've spent the last couple of days going to the park and playing outside. One of Drew's new favorite outdoor activities is looking for ladybugs. He's so cute. When he sees one he usually tells me what it's doing. "Look Mommy, it's under the leaf. That's silly." Ava seems to enjoy our outdoor time too. When Drew was a baby he hated to touch the grass. If we put him down he'd stay in one spot, not moving. Ava doesn't seem to mind it and walks around on the lawn looking for tasty leaves.

With our new "no big groups of kids" rule we had to figure out how to do church this morning. We were both working in the children's church so our kids had to be with us. We decided to keep Drew with me and the infants (they are less mobile and less able to spread germs) and set him up with the portable DVD player. It worked great! He sat quietly watching Cars during the entire service.

While I was in the nursery I overheard some other moms talking about how hard it is to take their babies to get their immunizations. This is not the first time I've heard this complaint or the first time it bothered me. It's not that I wish they had to endure the kind of hospital procedures that we have, or that I'm just cold hearted. I think that I am a little jealous. I wish I could be a "normal" mom and that the worst thing I had to worry about was a quick shot for my kids. I think I was especially sensitive this week because of the horrendous experience we just had with getting an IV in.

I am also preoccupied with concern about Riley, a sweet little boy we know who is going through an incredibly difficult hospitalization right now. His poor family is having the kind of experience we heart families have nightmares about. I find myself thinking about him and his family and checking his blog many times a day. I wish there was something I could do to help them, but having been in a similar situation I know nothing will help until they have him home safely again. Please keep his family in your prayers.