Monday, May 25, 2009
Adding to the travel part of the blog
I am slowly adding posts from the last two days in Nanjing and our time in Guangzhou. To keep things in order they are being backdated to April 24-30 so that they are at least in the correct month. Remember we use comment moderation so leave your comment and then it will post within 24 hours most of the time.
Sunday, May 24, 2009
One more thing from the cleft apointment
I forgot to mention that Will's right ear is shaped different and smaller then the left ear. When I asked the plastic surgeon about it he said it could be fixed when his lip and nose is revised between 4 and 5. I liked what it is called "a Spock ear" as in Spock from Star Trek. So the ear is not a problem or a sign of a syndrome. The ear is formed about the same time the rest of the face is.
Wednesday, May 20, 2009
Cleft palate team visit
Well it was a long afternoon of visits with the dentist, the plastic surgeon, the speech language pathologist and the audiologist. He is 37 1/2 inches tall and 31 pounds so he has gained an inch and a half and probably about 2 pounds as he did have a wet diaper on. Our appointment time was 1:30, but we did not start the visits until after 2.
First up was the dentist who looked quite young, but seemed very knowledgeable. First he explained that they worked with the plastic surgeon and tried to do as much work at the same time as other surgeries. He then said he expected Will to have alot of issues and I said the pediatrician had seen lots of brown spots and cavities. He looked at Will's teeth and said he was missing alot of the enamel and had many teeth with obvious cavities. I said that the almost nightly milk bottle to help him go to sleep probably did not help and he said no. He saw how resistant Will was to having his teeth looked at, he stated that they would do the cleaning, x-rays and all necessary dental work done under anestia. The list of possibilities was a little overwhelming: fillings, caps, crowns, root canals and extractions if necessary. The baby teeth do need to last him a little while so he will get them taken care of soon. The dentist said that they could find teeth the were in the actual soft palate or occasionally growing in the nose as the cleft palate could really change the direction the teeth grow in without bone to anchor them to the jaw.
Next up was the plastic surgeon who will close his palate. He started by saying all of this was fixable and that it would take time. When I indicated I was aware it was all fixable and would take several surgeries, as well as I was a special education teacher he got more detailed. He had a great bed side manner, introduced himself to Will and grandma and grandpa Ohio. I liked that he never tried to get Will's mouth open, but instead used the tongue depressor and his hands to move his lips and face gently so he could see most of the mouth. He pointed out that on the left side of the cleft in the gum he had a tooth growing in sideways that would have to be pulled as it was not useful. I'm not sure if he has a tooth on the other side, but it is quite possible. He also stated that will will need the gums closed, to help the teeth grow in and cut down on infections. He said the palate was very wide and might take two surgeries to close properly. (We meet a family in the waiting room whose daughter was to have her second surgery to finish closing the palate this summer. Mom was very pleased with the work so far and her daughters first surgery was in December) He said the schedule for summer was very full and it may be the fall before he could get Will on the schedule, he also wanted him to have several months to gain weight and eat lots of protein to help with the healing. Most children get their cleft palate fixed by 12 months old and that it is much harder for older children to heal. One of the reasons is that their is bacteria on the teeth and that they have not had as good of nutrition in the orphanage. He commented that most of the Chinese children he sees will eat as many boiled eggs as you put in front of them and this is true of Will he has eat as many as three in one siting and probably would have eaten more if they were cooked. I will be making him more as they are a good source of protein. Of course we want it to be sooner, but it will all work out in God's timing. He said the next surgery would be before kindergarten to revise the lip and nose. He said that children with bilateral cleft palate and lip have more surgeries then those with a unilateral cleft. He was very comforting and provided lots of information. He answered everyone's questions. He said that vegetables hurt his cleft and that is why he does not like them much. We should get a surgery date in two to three weeks as he will need to have the dentist and surgeon, probably the ENT for tubes.
Next up was speech language pathologist (SLP) Dr. Riski he was very easy going, explained how he got interested in cleft palate children in the early 70's. He talked about how to work with him now to keep him from leaning more bad habits. We are to work on the nasal sounds m, n, w, h, and y to say functional, social words, as well as p,b,t,d,s and sh sounds, he is to whisper, work on blowing through a whistle and to hold his nose to close of the palate and train him to properly use his vocal cords. We will start speech therapy at the clinic in mid-June. He looked at Will's mouth and thought that his short palate was long enough not to need to tighten the back of the throat when the palate surgery is, as it needs to vibrate for breathing and if he was to hypenasel later it could be fixed with one of two surgeries. He said Will already has bad habits in Mandarin and we are trying to keep him from learning more bad habits. So we will be working on speech alot this summer.
We then went to have a hearing test as many cleft children have fluid in their ears. He has fluid in both ears and a mild to moderate hearing loss in at least one ear. The reliability was fair as we needed a second examiner in the sound both. He did not move for the softer sounds and seemed confuse as to wear the mid tones came from. He quickly turned when the sound was normal or loud. So now we have to see the ENT to see if they think we should put in tubes when the palate is repaired or sooner.
So lots of information to digest and more follow up appointments to make.
First up was the dentist who looked quite young, but seemed very knowledgeable. First he explained that they worked with the plastic surgeon and tried to do as much work at the same time as other surgeries. He then said he expected Will to have alot of issues and I said the pediatrician had seen lots of brown spots and cavities. He looked at Will's teeth and said he was missing alot of the enamel and had many teeth with obvious cavities. I said that the almost nightly milk bottle to help him go to sleep probably did not help and he said no. He saw how resistant Will was to having his teeth looked at, he stated that they would do the cleaning, x-rays and all necessary dental work done under anestia. The list of possibilities was a little overwhelming: fillings, caps, crowns, root canals and extractions if necessary. The baby teeth do need to last him a little while so he will get them taken care of soon. The dentist said that they could find teeth the were in the actual soft palate or occasionally growing in the nose as the cleft palate could really change the direction the teeth grow in without bone to anchor them to the jaw.
Next up was the plastic surgeon who will close his palate. He started by saying all of this was fixable and that it would take time. When I indicated I was aware it was all fixable and would take several surgeries, as well as I was a special education teacher he got more detailed. He had a great bed side manner, introduced himself to Will and grandma and grandpa Ohio. I liked that he never tried to get Will's mouth open, but instead used the tongue depressor and his hands to move his lips and face gently so he could see most of the mouth. He pointed out that on the left side of the cleft in the gum he had a tooth growing in sideways that would have to be pulled as it was not useful. I'm not sure if he has a tooth on the other side, but it is quite possible. He also stated that will will need the gums closed, to help the teeth grow in and cut down on infections. He said the palate was very wide and might take two surgeries to close properly. (We meet a family in the waiting room whose daughter was to have her second surgery to finish closing the palate this summer. Mom was very pleased with the work so far and her daughters first surgery was in December) He said the schedule for summer was very full and it may be the fall before he could get Will on the schedule, he also wanted him to have several months to gain weight and eat lots of protein to help with the healing. Most children get their cleft palate fixed by 12 months old and that it is much harder for older children to heal. One of the reasons is that their is bacteria on the teeth and that they have not had as good of nutrition in the orphanage. He commented that most of the Chinese children he sees will eat as many boiled eggs as you put in front of them and this is true of Will he has eat as many as three in one siting and probably would have eaten more if they were cooked. I will be making him more as they are a good source of protein. Of course we want it to be sooner, but it will all work out in God's timing. He said the next surgery would be before kindergarten to revise the lip and nose. He said that children with bilateral cleft palate and lip have more surgeries then those with a unilateral cleft. He was very comforting and provided lots of information. He answered everyone's questions. He said that vegetables hurt his cleft and that is why he does not like them much. We should get a surgery date in two to three weeks as he will need to have the dentist and surgeon, probably the ENT for tubes.
Next up was speech language pathologist (SLP) Dr. Riski he was very easy going, explained how he got interested in cleft palate children in the early 70's. He talked about how to work with him now to keep him from leaning more bad habits. We are to work on the nasal sounds m, n, w, h, and y to say functional, social words, as well as p,b,t,d,s and sh sounds, he is to whisper, work on blowing through a whistle and to hold his nose to close of the palate and train him to properly use his vocal cords. We will start speech therapy at the clinic in mid-June. He looked at Will's mouth and thought that his short palate was long enough not to need to tighten the back of the throat when the palate surgery is, as it needs to vibrate for breathing and if he was to hypenasel later it could be fixed with one of two surgeries. He said Will already has bad habits in Mandarin and we are trying to keep him from learning more bad habits. So we will be working on speech alot this summer.
We then went to have a hearing test as many cleft children have fluid in their ears. He has fluid in both ears and a mild to moderate hearing loss in at least one ear. The reliability was fair as we needed a second examiner in the sound both. He did not move for the softer sounds and seemed confuse as to wear the mid tones came from. He quickly turned when the sound was normal or loud. So now we have to see the ENT to see if they think we should put in tubes when the palate is repaired or sooner.
So lots of information to digest and more follow up appointments to make.
Saturday, April 25, 2009
The zoo in Guangzhou
Will was not to into the big animals that moved around but he liked the giraffes. He was still pretty camera shy while we were in China.
This was looking at some of the Asian animals. Will is a mouth breather and so his mouth often is hanging open. He also really didn't know what to think about all the different animals.
He was not happy because the camel had been walking towards him. He did not like many of the big animals unless they stood still. I think he thought the animals could come and get him. He did enjoy the plants and the people.Friday, April 24, 2009
Mandarin Garden hotel
We stayed in this hotel from Monday till Friday afternoon in the capital city of Jiangsu province.
The hotel was considered a "5 star" by Chinese standards. It was a nice, but somewhat older hotel. It did have alot of things to do near by. I was amused that we were staying on the executive floor. The next picture is of our camera shy son. We stayed in room 1015 in Shanghai as well. I liked that we had a door bell that the staff did use if they came to our room. The buffet was good and the service was very good. It was the easiest meal of the day and we tried to eat as much as we could. Some days Will would sit in the high chair some days it was my lap. But he ate well everyday.
The hotel was considered a "5 star" by Chinese standards. It was a nice, but somewhat older hotel. It did have alot of things to do near by. I was amused that we were staying on the executive floor. The next picture is of our camera shy son. We stayed in room 1015 in Shanghai as well. I liked that we had a door bell that the staff did use if they came to our room. The buffet was good and the service was very good. It was the easiest meal of the day and we tried to eat as much as we could. Some days Will would sit in the high chair some days it was my lap. But he ate well everyday.
Pictures from the hotel in Nanjing
We had brought a small car (red) and plane (blue) that had Will's name on them and he liked playing with them. He laughed alot with us in the hotel room and liked jumping on the bed as well.The beach ball was a great item to have and packed easily. We just had to make sure it didn't hit the lamps to hard. Will like to hit it across the bed to his baba and to roll it on the floor anytime we were in the room. He was very interested in playing and this was the best interaction we had with him. He was always willing to play.
Friday, April 17, 2009
Doctor's appointment
Will did not like this trip to the doctor much more then he liked the one in China. He was okay in the waiting room, but when we started to take off his clothes he started to cry and scream. He will be 30 months old on Monday.
He is 36 inches long, (a yard stick as the Dr. said), 28.88 pounds in just his diaper. He is not only on the American chart for height and weight but at 50% for both height and weight. The Dr. was impressed with his height and weight for living in an orphanage for the first two plus years of life. The Dr. was very low key and quiet with him, he started with reviewing the information we had for him and our answers to the developmental questions they ask at each well child visit. He thought the not eating many vegetables or crunchy fruits might be cleft related and that the feeding specialist at the crano-facial team could help with that. He said it would take a little while for him to pick up the language, and that the Speech Language Pathologist (SLP) on the cleft team would be a good resource for what was learning a new language and what was cleft related. After the exam he said he was in good health, he does have lots of cavities.
We have chosen to just redo all the immunizations on the catch-up schedule the CDC recommends, (see this web site http://www.cdc.gov/vaccines/recs/schedules/child-schedule.htm). They also drew blood to redo all of his blood work. He will not get the Hep A and B vaccines unless he does not have the antibodies in his blood stream. So hopefully that will be two less vaccines he needs.
We have learned that what he does not like about the Dr. visits is taking all of his clothes off, so hopefully his cleft appointment will go better May 20th.
He is 36 inches long, (a yard stick as the Dr. said), 28.88 pounds in just his diaper. He is not only on the American chart for height and weight but at 50% for both height and weight. The Dr. was impressed with his height and weight for living in an orphanage for the first two plus years of life. The Dr. was very low key and quiet with him, he started with reviewing the information we had for him and our answers to the developmental questions they ask at each well child visit. He thought the not eating many vegetables or crunchy fruits might be cleft related and that the feeding specialist at the crano-facial team could help with that. He said it would take a little while for him to pick up the language, and that the Speech Language Pathologist (SLP) on the cleft team would be a good resource for what was learning a new language and what was cleft related. After the exam he said he was in good health, he does have lots of cavities.
We have chosen to just redo all the immunizations on the catch-up schedule the CDC recommends, (see this web site http://www.cdc.gov/vaccines/recs/schedules/child-schedule.htm). They also drew blood to redo all of his blood work. He will not get the Hep A and B vaccines unless he does not have the antibodies in his blood stream. So hopefully that will be two less vaccines he needs.
We have learned that what he does not like about the Dr. visits is taking all of his clothes off, so hopefully his cleft appointment will go better May 20th.