Oh friends! Thank you for thinking of us as we met with the craniofacial team at UCLA last week. I was so nervous about the appointment. I knew it would be long and exhausting–and I was worried we might get some bad news. I especially worry about surgery–ugh. That’s the ‘S’ word around our house!

We arrived at UCLA at 10:30am and David and I headed up to the crania-facial clinic while Steve and Matthias hung out nearby. I wanted Steve close in case anything unexpected came up–but there is no way Matthias can handle 7 hours in a doctor’s office. They found candy in the cafeteria and a nearby Target–so Matthias was a happy camper!

The sun was shining outside on the rooftop playground so David and I played as long as we could. He kept trying to go back outside during the appointments. It’s so nice they have that play space for kiddos!

We saw 10 different specialist including a limb deformity specialist, a plastic surgeon, a dentist, an audiologist and the list goes on. After 5 specialists, David crashed out. I was ready for a nap, too!

All of the doctors were so incredibly kind and patient with David. And he LOVED the attention. He held hands with them and sat on their laps. It’s easy to fall in love with David.

They took a blood sample and did a spinal X-ray. We uncovered two BIG pieces of information during the day. The first is that David is missing some adult teeth. This isn’t a huge problem, but it may require dentures in the future. The second discovery is that David’s 2nd and 3rd vertebrae in his spin {very high up in neck} are fused together. It’s been this way since birth but we didn’t know. It’s not life threatening and doesn’t require surgery–but it means his neck is more fragile. So we’ll continue to use a very sturdy car seat and we’ll avoid rough play.

At the end of the day, we met up with Steve and Matthias. I went to grab a coffee from the cafeteria for an evening boost. As I went to pay for my coffee, I accidentally spilled it down the front of me. The cashier was so kind and patient. And I burst into tears. I think it was a combination of worry and relief and exhaustion. I was one very tired mama!

We are planning follow-up visits with many of the specialist–particularly with the dentist and audiologist. Can I tell you from the bottom of my heart how grateful I am for your thoughts and prayers? Your FB comments, tweets and emails helped me to get through a long, hard day. YOU are an encouragement to me–and I am so thankful for you!

So many of you care about our sweet David–and I can’t begin to tell you how much it means to me!

I told you we visited David’s pulmonologist at UCLA on Monday and the appointment went well. Later we got the results of David’s sinus x-rays and found out that he has some pretty serious sinus swelling and infection and also a large cyst above his left eye. He’s been congested for the last 8 weeks, so while we are relieved to be getting answers, we were so bummed to hear that there is a more serious problem.

In the next few weeks we’ll be doing an intense four week course of antibotics and we are using a new nasal spray to help with congestion. In a month or so, we’ll reassess with the doctors and decide if surgery is needed.

I was super sad for a day and cried a lot, but now I’m pulling it together and moving forward. David is a trooper. Even with his congestion and headaches he is happy and playful and living life to the fullest. There is so much to be thankful for and I don’t want to waste time feeling sad or angry. So I’m taking a cue from David and I’m living in the moment. I’m letting it be imperfect but beautiful at the same time.

This weekend we are celebrating Steve’s birthday {happy birthday sweetheart!} and relaxing a bit. What are your weekend plans?