We had our evaluation at the IU recently. Could I be any more proud of this girl? She did so well with all of the tests. She surprised me a bit picking out which boy in pictures was running and which one was eating etc. etc. They had a Chinese translator there for her but she didn't really need her. She is doing so well with English. There were all sorts of specialists there evaluating her fine and gross motor skills, cognitive abilities, and language development. Seemed like her receptive language was very good but expressive language a bit lacking. She will need speech for sure because it is very hard to understand what she is saying. We don't think she will make too much progress in speech until she has her next two surgeries Regardless, we will still go one time a week once her IEP is written and we meet with them again. There is an IU speech therapist that specializes in kids with clefts and works out of the Lancaster Clinic so we will go there for speech. Other than speech I don't think she will qualify for any other services but maybe they will qualify her and just come once a month to give me ideas to keep her on track developmentally. They were all such amazing, upbeat, competent people!
We scheduled another team visit at the Lancaster Clinic early in January to discuss and arrange for surgery. It will most likely be a total lip revision and z-plasty (lengthening of the palate). These are not dangerous surgeries but will require a couple days in the hospital and 6 weeks of a soft diet. Good thing she likes congee and noodles! The lip repair takes about 6 months to heal. the lip revision worries me the most. She is so active. I can't imagine her being careful not to fall or bump into something and she will probably have to wear arm restraints for awhile so she does not touch her face. Oh, it all makes me sad but from what we hear from her major palate surgery in China she is very brave. She will be a trooper about it all and Mom and Dad will be a mess for sure!
Monday, November 9, 2009
Tuesday, November 3, 2009
Cleft Team Appointment
We went to the Lancaster Clinic today for Grace's big appointment. We saw a speech therapist, orthodontist, dentist, craniofacial surgeon/plastic surgeon all in one afternoon. The Lancaster Clinic was one of the pioneers of the "team approach" to treating cl/cp. You see all of the specialists in one day and then all of the specialist meet together in the evening to discuss a course of action for your child. We were SO impressed with everyone there.
The speech therapist had so many positive things to say about Grace. We talked to the therapist most of the time but she did work with Grace for just a few minutes. Grace showed improvement in that short time! We will set up speech therapy once a week in the next month or so.
The surgeon confirmed what we had expected... her lip and palate are in need of much repair. He was straight forward about it but very optimistic and certainly not shocked about any aspect of her condition. He has been doing these repairs for 25 years in the US and on medical mission teams oversees. There is nothing he has not seen and he has done hundreds upon hundreds of these surgeries. The procedures that she will need will be spread out over time. Step by step. The first step will be a Z-plasty which is a procedure to lengthen the palate as well as a complete lip revision. The muscles on her lip were not connected properly so they will take care of that and do some other cosmetic changes. Her nose will not need too much repair but will improve in appearance when her lip is corrected. We will schedule the Z-plasty and lip revision sometime in the Spring most likely. The z-plasty will greatly improve her speech so we want to do it soon but not too soon because we want to love on her a little more before we put her through a major, but not dangerous=), surgery. We have come so far in bonding with Grace we don't want to take a step back quite yet. 6 months home is about the recommended time before surgery if possible.
Grace did such a great job with it all. We were such the proud parents! She was high fiving everyone and showing off. She took to the surgeon right away which was so cute. You could tell that he just loves kids. She could tell too. It is funny, we talk about all of these corrections that will be made and we do really want the very best for her but we just love her little face. It is hard to think that she will look different than she does now. Her Daddy has been smitten with her since the first day her little picture came across our computer, split pants and all! lol! As she goes through times in her life and develops her own self-concept, I hope she fully realizes how strikingly beautiful her Daddy thought she was even before all of these cosmetic changes.
We are just overjoyed with the level of care available to sweet Grace right down the street from our house. It was one of the million pieces of the puzzle that allowed this miracle to happen in our lives.
We will have Grace evaluated at the IU next week so more to come.
The speech therapist had so many positive things to say about Grace. We talked to the therapist most of the time but she did work with Grace for just a few minutes. Grace showed improvement in that short time! We will set up speech therapy once a week in the next month or so.
The surgeon confirmed what we had expected... her lip and palate are in need of much repair. He was straight forward about it but very optimistic and certainly not shocked about any aspect of her condition. He has been doing these repairs for 25 years in the US and on medical mission teams oversees. There is nothing he has not seen and he has done hundreds upon hundreds of these surgeries. The procedures that she will need will be spread out over time. Step by step. The first step will be a Z-plasty which is a procedure to lengthen the palate as well as a complete lip revision. The muscles on her lip were not connected properly so they will take care of that and do some other cosmetic changes. Her nose will not need too much repair but will improve in appearance when her lip is corrected. We will schedule the Z-plasty and lip revision sometime in the Spring most likely. The z-plasty will greatly improve her speech so we want to do it soon but not too soon because we want to love on her a little more before we put her through a major, but not dangerous=), surgery. We have come so far in bonding with Grace we don't want to take a step back quite yet. 6 months home is about the recommended time before surgery if possible.
Grace did such a great job with it all. We were such the proud parents! She was high fiving everyone and showing off. She took to the surgeon right away which was so cute. You could tell that he just loves kids. She could tell too. It is funny, we talk about all of these corrections that will be made and we do really want the very best for her but we just love her little face. It is hard to think that she will look different than she does now. Her Daddy has been smitten with her since the first day her little picture came across our computer, split pants and all! lol! As she goes through times in her life and develops her own self-concept, I hope she fully realizes how strikingly beautiful her Daddy thought she was even before all of these cosmetic changes.
We are just overjoyed with the level of care available to sweet Grace right down the street from our house. It was one of the million pieces of the puzzle that allowed this miracle to happen in our lives.
We will have Grace evaluated at the IU next week so more to come.
Home a month+
Can't believe we have been home more than a month! Rob had the flu this past week. It was horrible! I think the kids all had a touch of it except Grace. She has been healthy as can be. I have avoided it as well. Anyway, wanted to post about regular life because we will probably post a lot next week concerning our meeting with the cleft team on Tuesday.
Grace continues to do so well. She is happy, energetic, determined, and sooooo loved! I have returned to my two mornings of teaching PE at Cole's school and she has done well staying with my Mom. We practiced separating a few times before my first morning and she does well. The first time I left her to go run a quick errand she cried a little and then played happily. She didn't want me to put shoes on for the rest of the day though! After a few other practice times of separation she seems to be doing well with it. I think she is understanding that Mommy always comes back just like Daddy does.
Grace is very active and very busy. She loves to sing and dance and play outside. We hike in the woods just about every day and visit the little park at the church. She is learning to pedal a bike and doing pretty well with it. When it rains we all get very antsy! Cody and Grace need a lot of supervision so I don't get much done during the day. Call before you come over or you may witness what appears to have been a major disaster inside my house=) Grace loves taking baths, putting things in and out of her Dora backpack, and playing with Daddy. Her Dora backpack is falling apart. She fills it so full with heavy stuff and carries it everywhere. I don't understand how her shoulders take it!
One of the most challenging thing is Grace's speech. She understands us so well but she has trouble saying a lot of sounds so it is hard to understand her. This considered, it is truly remarkable how well we do communicate. She has a way of telling us how she feels and what she wants despite her speech delay. At times though her inability to communicate clearly can be frustrating to her and to us. She yells and grunts a lot when she wants something which can be tough to hear again and again but she is slowly learning to break this habit and ask for help, or chocolate, appropriately=)
Grace is doing very well at nap and bed times. These are the times she usually would cry and cry for her foster grandmother. She doesn't cry anymore and she responds well to looking at their pictures and talking about China and the adoption. We talk about the day Gracie met her Ma ma and her Ba Ba and how it was hard to say bye bye to her Nai nai and Ye ye. We ask her if she has to say bye bye to Ma Ma and Ba Ba and she says no no no no. We say that's right no more big changes, this Ma Ma never leave this Ba Ba (Daddy) forever. She has been told these things often in Chinese and English. I really do sense she understands.
Well, that is it for now. Thanks for checking in on us!!!
Grace continues to do so well. She is happy, energetic, determined, and sooooo loved! I have returned to my two mornings of teaching PE at Cole's school and she has done well staying with my Mom. We practiced separating a few times before my first morning and she does well. The first time I left her to go run a quick errand she cried a little and then played happily. She didn't want me to put shoes on for the rest of the day though! After a few other practice times of separation she seems to be doing well with it. I think she is understanding that Mommy always comes back just like Daddy does.
Grace is very active and very busy. She loves to sing and dance and play outside. We hike in the woods just about every day and visit the little park at the church. She is learning to pedal a bike and doing pretty well with it. When it rains we all get very antsy! Cody and Grace need a lot of supervision so I don't get much done during the day. Call before you come over or you may witness what appears to have been a major disaster inside my house=) Grace loves taking baths, putting things in and out of her Dora backpack, and playing with Daddy. Her Dora backpack is falling apart. She fills it so full with heavy stuff and carries it everywhere. I don't understand how her shoulders take it!
One of the most challenging thing is Grace's speech. She understands us so well but she has trouble saying a lot of sounds so it is hard to understand her. This considered, it is truly remarkable how well we do communicate. She has a way of telling us how she feels and what she wants despite her speech delay. At times though her inability to communicate clearly can be frustrating to her and to us. She yells and grunts a lot when she wants something which can be tough to hear again and again but she is slowly learning to break this habit and ask for help, or chocolate, appropriately=)
Grace is doing very well at nap and bed times. These are the times she usually would cry and cry for her foster grandmother. She doesn't cry anymore and she responds well to looking at their pictures and talking about China and the adoption. We talk about the day Gracie met her Ma ma and her Ba Ba and how it was hard to say bye bye to her Nai nai and Ye ye. We ask her if she has to say bye bye to Ma Ma and Ba Ba and she says no no no no. We say that's right no more big changes, this Ma Ma never leave this Ba Ba (Daddy) forever. She has been told these things often in Chinese and English. I really do sense she understands.
Well, that is it for now. Thanks for checking in on us!!!
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