Appointments and Meetings

I was sitting in one of my mom's groups on Wednesday when I realized that I would be missing the next two Wednesdays because of big appointments for Drew. The first one is Dec 5 and is with the cleft and craniofacial panel. Yes a panel. It's a four-hour long appointment and a parade of doctors will be coming in, probably not with a lot of good news. Drew saw the panel when he was three months old, so technically this is a follow up appointment. Last time he saw an otolaryngologist, a geneticist, a pediatrician, a clinical nurse specialist, an oromaxillofacial surgeon, pedodontist, two audiologists, a social worker and a speech pathologist. I am dreading this appointment because most of the time I can convince myself that Drew is doing great and we only have to worry about his heart issues, but this panel of doctors will be looking for things that are wrong and it feels like being diagnosed all over again every time they tell me what I should look for. I am trying to remember that Drew is the same today as he was yesterday and just hearing the information does not change who he is.

The following Wednesday is his heart cath at UCSF. I am not too worried about this appointment, but I think my anxiety will increase as it gets closer. Which is why I am keeping myself busy with holiday parties, shopping, painting, etc. I am also nervous because I had a total breakdown after the last cath and I am hoping to avoid that this time. But I do have a friend lined up to take care of our family the day after so I can "decompress" if I need to.

Last night was another Hearts of Hope meeting. At first I was sad hearing everyone's stories, but by the end of the night I was inspired. I was sitting in a room full of women (and a few men) who have been through A LOT. And each person was encouraging someone else. They were there not just for support for themselves, but to reach out to someone on the same path. These people are amazing and I am honored to be among them.

Black Friday

The last thing I would ever want to do is go shopping on Black Friday. I do not like crowds. I don't like people touching me. And I don't really like shopping. I purposefully avoid the stores on weekends or evenings because that's when everybody else goes. I only go during the day on a weekday. Because I know that everyone and their brother is out shopping after Thanksgiving I decided that I would get all my Christmas shopping done before the holiday. And I did get most of the people on my list taken care of. And so on Black Friday we stayed home and put up all our Christmas decorations. Dan and his family worked on the outside of the house, mowing the lawn, raking the leaves, pruning the roses and putting up the lights, the deer and the train. Drew and I worked on the inside of the house (while Ava was napping) taking down all the Thanksgiving decorations and replacing them with the Christmas decorations. Here's what the outside looks like:

And here are some of the inside decorations:

I think I am taking a chance leaving the breakable nativity and glass ornaments in reach of the children, but we will see how that goes. So far they have been pretty good about "just looking."

Thanksgiving Recap

We had a wonderful Thanksgiving! Dan's family came here and we hosted Thanksgiving dinner. We started the day out though, by participating in the Run to Feed the Hungry, which benefits the local food bank. Dan, his brother Scott, and I were running and Grandma Kathy and Great Aunt Jennifer brought the kids to watch us run. It was crowded! There were over 25,000 people running and we ended up sitting on the freeway offramp for thirty minutes! We were a little late but there were so many people running it didn't matter. The first and last mile were packed because the 5k and 10k runners were together, but the rest of it was pretty clear for running. I think we finished the 10k in about an hour and ten minutes and Scott, the runner in the family, finished in only 44 minutes!

After the run we headed home, showered and got the turkey in the oven. We did lots of food prep and then rested. The menu included turkey, garlic mashed potatoes, gravy, stuffing, green bean casserole (my favorite), rolls, cranberry sauce (two kinds) and pie (dutch apple and blackberry).

We did have a couple of notable Thanksgiving mishaps. First I have magnetic tot locks on my cabinets and kept having trouble finding my magnetic "keys." At one point Jennifer was checking on the turkey and said "what is that dripping from the bottom of the turkey?" It turns out one of my magnets attached itself to the bottom of the turkey roasting pan and was melting inside the oven! Then when it was time to take the turkey out we dropped him upside down half on the counter and half on the stove. Turkey juices dripped all down the front of the cabinets and down the oven. But at least it wasn't on the floor. That was the rolls. As I took the rolls out of the oven they started to slide off my cookie sheet and as I tried to compensate the sheet went the other way and all the rolls ended up on the counter or on the floor. We decided a little dirt didn't hurt and ate them anyway! And finally during clean up three glasses were broken! Despite our mishaps we had a very happy Thanksgiving and I hope you did too.

Unfortunately I could not find my camera the entire weekend and so I have no pictures. I remembered the last time I saw it Ava was holding it up to her little face and saying "chee." I knew she put it somewhere, but couldn't figure out where. Finally, just before Jennifer left on Saturday I found it in one of her toy baskets!

Giving Thanks

In my family we have a Thanksgiving tradition of going around the table and each sharing something that we are thankful for. One year, soon after one of Drew's hospitalizations, I got all teary and said that I was thankful for...antibiotics. Yep, I know it's cheesey, but I'm a cheesey kind of girl. And every year I am reminded that I said that. So, even though I know its sentimental, I thought I'd make a list of what I'm thankful for this year.

I am thankful that today I spent the day with my kids. We read books and played outside. We were silly and spent a lot of time just laughing together. They are both healthy. They are both happy. They are both adorable. I get to stay home and take care of them. I am so lucky.

I am thankful that I have a husband who loves and supports me even when I think I'm not very loveable. He is my safe place. We have fun together. We work hard together. We are a good team. I am so lucky.

I am thankful for my parents who made sacrifices to give me every opportunity. I appreciate the rules they made and the lessons they taught me. They continue to sacrifice, worry about me and love me to this day. I am so lucky.

I am thankful for my God, who loves me more than I can understand. I know that I am learning and growing through my struggles. I know that God will redeem my every sorrow. I know that he walks with me through it all. I am so lucky.

I am thankful for my friends. For the friends who can listen to me cry, the ones who can point out the postives, the ones that I can dance with all night long, the ones that I can shop with, the ones that I can just watch TV with, the ones that I can support, the ones who pray for me and the ones who have known me forever. I am so lucky.

I am thankful that we live in the U.S., that we have good health insurance, a house to live in, food to eat, our health, each other. I am thankful for all the wonderful doctors, nurses, therapists, and other heart families we have met. I am thankful for antibiotics.

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.

Ava's 18 months old!

Where did the time go? I swear it was yesterday that we brought her home from the hospital, all bundled up in pink and purple. My tiny little newborn with a full head of hair, and constantly moving from the very first day. But, no, she is 18 months old and in the throes of toddlerdom. She had her well baby check today and it is confirmed that she has a successful career as a supermodel ahead of her.

Weight: 20 lbs 12.6 oz (6%)

Height: 32.5 inches (74%)

Head: 47.5 cm (76%)

Apparently she's tall and thin with a big head. And she's also working on her skills as a diva. Yesterday she decided she did not want to come play outside at Drew's preschool. In protest she threw herself on the ground and refused to walk. I tried to leave her there, thinking she'd get upset we were leaving and follow us, but she just stayed there. So I took her hand and half dragged her out of there, then picked her up football style the rest of the way. My goodness. I think we may have a Naomi Campbell on our hands!

If You Want Me To

I wanted to share this song because it is so meaningful to me. I love what it says, but I can't sing it without crying. We sang it in church this Sunday and I broke down into tears again. I hope that someday, when I've fully accepted our situation, I'll be able to sing it.

If You Want Me To
by Ginny Owens

The pathway is broken
And the signs are unclear
And I dont know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley If You want me to

CHORUS:
Now I'm not who I was When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone

So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley If You want me to

Family Update

Lots of stuff going on around here. Ava has been keeping us on our toes lately by climbing onto anything she can. I was trying to wait to post about this until I could get a picture, but so far I've just had to hurry and save her from falling to her demise instead of running for the camera. Here's a list of places that I've found Ava this week.

1. Standing on the bathroom counter turning the light on and off.
2. Standing in the middle of the kitchen table playing with my decorative gourds.
3. Sitting on top of the kitchen counter, trying to open a permanent marker.
4. Crouching on top of Drew's dresser (it's tall!) and crying because she was stuck.
5. Balancing between the rolling chair and Dan's desk, trying not to fall as the chair rolled away.

She's crazy! And not afraid at all. Today as we were leaving preschool she took off running in the parking lot (she was on the sidewalk, but still) and was laughing hysterically as I chased her. Even when I caught her and told her she was naughty she just thought the whole thing was amusing. She can even say naughty, she's heard it so much.

Drew's been busy too. He loves preschool! He has fun playing with his friends. This week they had Leaf Day and he brought in two pretty fall leaves. He's making cute little preschool crafts. When I ask him what he learned every day he tells me a little about it. He's got all three of his memory verses memorized (I am wonderfully made; Be kind to one another; Give thanks to the Lord for He is good). He's also been learning the sounds the letters make by watching his Letter Factory video nearly every afternoon while Ava is napping and Mommy gets a moment to herself.

Dan's been busy with work but is finding time to ride his bike once or twice a week, play poker with his buddies and even got to play golf this week. I was away last weekend and he did fantastic on his own with the kids, even taking them to the zoo. He is such a great Dad and husband. I am so lucky to have him.

I've been trying to keep up my workouts, but we've all been sick so its been difficult to keep up. My new plan is to try and bike once a week, run once a week, and do yoga or pilates once a week. I am also planning to run a 10K on Thanksgiving morning. I've been keeping busy with my mom's groups twice a week and on Thursdays we have a little girls playgroup. I also started a mentorship program though church that I am really enjoying. Maybe I'll write more about that later.

We also had some beautiful family photos taken by our photographer friend, DeAnna, this week. I'm trying to decide if I should post them here since they will likely be featured on our Christmas cards and could possibly be gifts for some people. Maybe I could just do a few...

She wasn't sleepy

Ava was up all night last night. So you'd think she'd be ready for her nap this afternoon. You would be wrong. She cried and was making a lot of noise for a while, then quieted down. We thought she was asleep. Until I heard the sound of paper crinkling coming from her room. This is what we found...

Happy Halloween!

Ava is a little bee and Drew is Bob the Builder

We had fun trick-or-treating last night! We told Drew he could go trick-or-treating after dinner. He ate his whole dinner (that hardly ever happens) and then wanted to go go go! I got him dressed and Ava was still eating and it wasn't even dark yet! We left around 6:30 and walked around our little neighborhood. They both were really into it. Drew would say "I got a lot of candy!" after each house we went to and Ava would clutch her bucket in her tiny little fist and shout "Mine!" if any of us got too close to her candy. As Dan said, she knew she had something valuable. I was surprised how much Ava like it. She was practically running to each house and she'd say thank you and bye to the people.

Unfortunately (or fortunately depending on how you look at it) she didn't last long and began to have a total meltdown where she wanted to be held, but she also wanted to walk and her candy bucket was getting heavy but she didn't want to relinquish control of it. We were back at home by 7:15 and she was in bed shortly after that. Drew had fun seeing the other kids come to the door and was all hopped up on candy acting like a crazy man. I don't know if it was related to all the sugar they ate or not, but the kids were up all night long, taking turns waking us up after what seemed like just minutes of sleep. We are tired! But, there's lots of candy to get us through the day...

The kids holding hands as we start our trick-or-treating

An action shot of the kids knocking on the door

Our attempt at a family photo right before Ava's meltdown

The kids enjoying some of their candy