Thursday, September 13, 2007

Cleft - Craniofacial Clinic



I have spent the last few days trying to process the information from Monday's appointment at the Cleft Craniofacial clinic in Pittsburgh. My dad traveled with Ethan and I while my mom stayed home to watch Nyla and Liam. We met many people and they were very professional and kind. First we saw Dr.Jiang, the plastic surgeon. He was excited to hear that Ethan is from his home province in China, Jiangsu. He spoke to Ethan a little in Mandarin. When he looked at Ethan's palate, he discovered how very wide it is and he was not sure if it can be closed with one surgery, it may require 2 stages to close. Dr.Jiang was also surprised to hear that he was on the bottle. Only a few weeks ago his only source of food was the bottle and I found out that he had to be off it completely before surgery. That was a little scary!

The clinical coordinator came in after Dr.Jiang and they debated the 2 surgeries versus other alternatives. They decided to wait 2 months, allow Ethan time to bond and come off the bottle, then reassess to see if the palate has closed a little more on its own. Their goal is to have his palate closed at 18 months, with the first surgery taking place around 15 months. This will allow for his speech & language development around the appropriate time.

Matt was very helpful in giving me tips to feeding Ethan with the Nuby cup instead of the bottle. They were happy with the results of the surgery on his lip that was done in China and they reviewed the paperwork that we had received. They seem very dedicated to helping these kids, I can tell that they get great satisfaction from their work.

The social worker & nurse practitioner then came in. After talking with many people they brought us to the audiology exam area. It was getting late and hard to hold Ethan without his fussing but she did her best to do a hearing test. It looks like he might have fluid behind his ear drums resulting in some reduced hearing in both ears.

We got home from Pittsburgh right around bedtime and instead of warming a bottle, I cut the top of the Nuby cup a little and fed him the warm formula in that. He took it and has since been using only the Nuby cup for his formula. I am happy that we can spend time feeding and bonding the same way we did with the bottle. Ethan is also doing great with foods, eating 3 meals a day of baby food and oatmeal, plus he actually puts the occational Cheerio in his mouth. He started putting some toys in his mouth yesterday as well.

We have another appointment with Dr.Williams today to follow up on lab work that was done last week and to start some immunizations. The staff has been great, helping Ethan with all the appointments, labs, referrals, etc.

I would also like to take a moment to thank everyone for the cards/gifts and well wishes. We are reminded of how lucky we are to have wonderful family and friends. I hoped to have an open house for anyone who wanted to stop by and meet Ethan, but alas that would require some organization. With school, soccer, karate, etc and Ethan's appointments I have not had much time. So anyone who has not already met Ethan and would like to stop by, please feel free any time! I plan on bringing Ethan to the Panda club Chinese classes so our friends can meet him!

Tuesday, September 4, 2007

Settling In


We have been home for 4 days now and I think we are all finally getting over the jetlag. Ethan continues to wake up during night but usually after 3am. I have been more consistent with feeding him solid foods, some meals he eats great, others he takes only a few bites and he's done. I am hoping we get on a schedule where he is pretty content. His molars are also coming in, so I am not sure if that is affecting him these days. The last few days have been a big transition for him, new home, new bed, new faces, so we are just trying to meet his needs day to day and we're hoping that we are doing the right things. Tonight his sense of humor emerged, he was throwing his head back onto Nyla's lap and making her laugh over and over again. Today, he also followed her (as she led him with a balloon) out of my sight into another room. He has generally only stayed nearby my side for the last 2 weeks. I am happy to see those bonds develop.

On Saturday evening we tried our best to celebrate Nyla's 5th birthday. Liam fell asleep and missed the cake. Ethan was falling asleep drinking his bottle. Nyla was happy regardless, happy birthday!




I will try to continue posting Ethan's progress on this blog over the next several months until his palate surgery is completed. We have our first appointment in Pittsburgh on September 10th. I hope that we will know more after that visit. Until then, we are enjoying this beautiful fall weather, I know I am happy to be in a place with beautiful blue skies!