Grace's Consultation at Children's Hospital

We had a 1:30 appointment today at the Craniofacial Clinic at Children's Hospital to get some more information about Grace's cleft palate surgery. At 2:30 p.m. we finally left the waiting room and went back to exam room. Grace played nicely for the first 45 minutes or so, but then got fussy because it was about naptime. Luckily, she let me hold her and rock her and fell asleep in my arms about 10 minutes before they called us back.

The first doctor that we saw was the surgeon that will be performing the surgery. He said his office will call me to put it on the schedule. I asked when he thought it would be and he said in December, around her birthday. She will come in for surgery, spend the night and most likely come home the next day. They need to be sure she is eating and drinking well before she comes home. He said the worst part for her and me is that she will need to be in arm restraints to keep her from putting her hands in her mouth. I asked how long, and he said "2 to 3 weeks." That's right, she won't be able to put anything in her mouth for 2 to 3 weeks. I asked how that will affect her crawling, walking, pulling up, etc. He said it might set her back during that time. The restraints will keep her from bending her arms at the elbow. She will be allowed to use a bottle and have soft baby foods. She will also be permitted to use a pacifier, but won't be able to put it in her own mouth. I asked how they will fix the hole. They will cut two slits in the skin on the roof of her mouth to either side of the opening. Then they will pull the skin over and sew it shut in the middle. The raw areas on the sides will heal over the same 2 to 3 week period. He gave a 85% chance that she will only need the one surgery.

Next we saw the dentist team. He looked at her new teeth and was glad that I am already brushing them. He gave me the name of a dentist that she should see when she is between 18 months and 2 years old. This dentist is familiar with cleft palate patients. He said the only issue she may have is that after the surgery, her mouth may be "less stretchy" so her upper jaw may not widen appropriately. If this becomes a problem, she may need some orthodontics to help correct it.

Next came the speech therapist. She asked if Grace was babbling and if she was making any sounds that might be words. I told her she says ma-ma, but I don't know that she means anything by it. She asked if she understands commands like come here, no, or lifts her arms to be picked up. I said yes. She asked if I had any concerns about her hearing or any other issues. I mentioned that she doesn't make the "da" sound yet. I asked when we will know if she needs therapy. She said at her 2 year appointment, they will be sure she has several words in her vocabulary. At age 3 they start listening to the quality of the words. Therapy may come after that. She also told me to use the non-spill proof sippy cups to teach her how to drink. She doesn't think that she will be able to use a spill proof one right now. Although, the day-care says she uses one well there, I may need to see which kind I gave them and try it out at home. I asked about her bottles. She said that after surgery I can keep using the same bottles or just wean her to a cup at that time. I'm not sure what we'll do yet.

Next came the ENT (Ear, Nose, & Throat) doctor. He asked about her ear infections, and I told him that she's had 2 single, and 2 doubles. He looked in her ears and said the eardrum looks, "dull and doesn't have much movement." He definately thinks she should have tubes put in. It will add about 5 minutes to the surgery. They will make a tiny slit in her eardrum and insert the tube for drainage. They will grow out in about a year and by that time, she hopefully won't need them anymore.

Finally, the surgeon came back to wrap up. I asked him about Grace's recovery time and how much time we needed off work before she can go back to daycare. He said we should be with her at least 2 weeks, maybe 3. I guess that makes since with the arm restraints. It might be hard to send her back to daycare like that.

So, we're waiting on a call to schedule her surgery. I'm hoping if they are doing December, that they will do it after Christmas. I keep thinking of her in those restraints for a birthday party and Christmas. It just seems so sad. Also, I only have 5 days of vacation left to take this year. If it was after Christmas, the two week period would go into January, and I'd have more vacation. Although, Eric seems to think he'll have a lot of trouble getting off work the last week of December. If taking time off is a problem, we may be able to get some Grandma help. I know my Mom mentioned wanting to come out when Grace has her surgery. Also, Eric's mom told us that she is off work from December 16 - January 2, so we may be able to have them help out if we need to go back to work. I have two January 1 renewals, so I may need to go in for a day or something. I guess we'll just see how the scheduling goes and go from there.