On Friday we took Lily up to All Children's for her first appointment with the cleft team. I was a little worried about how she would do because the appointment was at 12:45, which is - you guessed it - right in the middle of nap time. Add a few strange doctors shoving things in her ears and mouth, and I was expecting a total disaster. We fed her an early lunch and prayed that she would sleep in the car on the way there. She slept for about 20 minutes, then woke up crying because her poor neck was at all sorts of strange angles and her head kept hanging forward. I remembered a little too late that I could tilt her carseat back a little. (FYI she is normally not so uncomfortable, but we moved her to the Jeep and the seats are super straight up. I swear we aren't bad parents ;o)
Anyway, we got there and signed her in, she got weighed and measured, then we headed back to the room where we would see 8 different specialists. The audiologist came in first and took us back to a soundproof room to do Lily's hearing test. I went in with her and had to keep her sitting on my lap and facing forward. The wall in front of us had three sets of speakers - to the left, right and center - and positioned around the speaker were robotic or mechanical animals in boxes. There was a dog right in front of us that would bark and walk, but obviously couldn't go anywhere because it was in a clear box. That one was great for getting Lily's attention when she started squirming. To the right was a monkey playing drums, and I'm not sure what was to the left because I was instructed not to look around and influence where she looked. The audiologist would play sounds of varying volumes in the different speakers to get Lily to look at them, and then activate the animal to keep her interest. She did pretty well with most of the sounds, but there were definitely several that I heard that she didn't even react to. Oh, did I forget to mention that she finished amoxicillin the day before for a double ear infection? So basically the hearing test was kind of pointless. The audiologist said that she might have hearing loss, or she might not, it was hard to tell since she still had fluid in her ears. She recommended another hearing test in 2 months. The ENT that we saw a bit later was more encouraging. She said that her hearing test was right on target for fluid in the ears, and that when the fluid was gone she would probably have normal hearing. However, the fluid might not clear out on its own which is very common in cleft kids. Then she would require tubes. Apparently about 90% of kids with clefts require tubes. She's going to check Lily's ears again at one of her upcoming visits, and if the fluid is still there then she'll have tubes put in during surgery.
After the audiologist we saw the speech pathologist. She was impressed that Lily was comprehending many English words and that she has learned a few signs. She encouraged us to teach her more signs to help her communicate until she's able to talk and showed us a few strategies for teaching them to her. Then the social worker came in and talked to us about what to expect during our hospital stays. After that was the ENT, along with our surgeon Dr. Ruas. They examined Lily's cleft and talked a bit about what approach they would use. Dr. Ruas was hopeful that Lily would be a candidate for using braces to start closing her gum line which would enable her to have one surgery instead of two. Unfortunately when the orthodontist got there and looked in her mouth (Lily was NOT a fan of this or of him as a result) he didn't feel that he could do it with only one tooth on her left side. So that means that we will be having two separate surgeries - one for the lip and gum line and another several months later for the palate.
Next a pediatrician came in. She examined Lily briefly and asked us if we had any concerns. We didn't, but she promised to send us a developmental checklist for 18 months so we could see if Lily was on target. We also saw a pediatric dentist who thought that Lily would only be missing one tooth. He told us that if the baby tooth is missing the permanent one will be too. Last was the nurse who coordinates everything. She told us that she would be calling us in a few days to schedule our appointments.
All in all we were there from 1:00 to 3:30 and Lily did amazing! The only times she got upset were when someone was examining her. The rest of the time she was wandering around the room laughing and entertaining us. I think she was loving having two parents all to herself! She is definitely a brave little girl.
So, for those of you who want to know, here's what our upcoming process looks like.
Next Monday we will be heading up to All Children's to have impressions and photographs done of Lily's mouth. These impressions will be used to make the Latham device that will close her gum line. We have to be there at 6am, yikes! And she has to be put under which of course makes me a little nervous.
Then a week later we go back to All Children's and Dr. Ruas will put the Latham device in her mouth. The nurse told us to expect an overnight stay, which I was surprised about. I guess Lily will have to drink before they let us leave, and she will be pretty uncomfortable.
A month after that on March 3rd we go back to All Children's again for surgery to close her lip and gum line. This will be a more major surgery, and we will be in the hospital for several days.
After that she will need several months for the lip to heal completely before they close her palate. I will be glad for the break from surgeries for a bit! While the next few weeks will be busy, at least we will have this part of our journey behind us soon. We would really appreciate your prayers during this time. For Lily, that her pain would not be too unbearable and that she would feel safe with us by her side during this scary time. For us that we would be wise in making decisions and not too nervous! Also that we would be patient during her recovery. And also for Matthew and Caroline, who will be very excited to be spending extra time with Baba, but will probably struggle with the extra attention that Lily will be getting.