Christmas is here and will be over way too soon. It has been such a beautiful day and I am so thankful to spend the holiday with our loved ones.
I had gotten the Faith Hill Christmas CD and have fallen in love with "A Baby Changes Everything". Listen to it here http://music.aol.com/new-releases-full-cds/#/1.
Thursday, December 25, 2008
Thursday, December 18, 2008
Is it December already?
I keep asking myself, "Is it December already?" I can't believe how fast time is flying by. This week has been the usual with Speech Therapies on Monday and Wednesday, Physical Therapy today, and Occupational Therapy tomorrow at 6:30 in the morning. Ohhh, how I love the weekends!
On Tuesday we took Kendal to her new geneticist. This doctor is mainly a research doctor that only sees patients two days a month. He spends the rest of his time doing research mainly on Angelman Syndrome and research on gene therapy for genetic disorders. Both me and James really, really liked him. He was very personal and easy to talk too; which, for a geneticist is pretty unique. He spent over two hours with us covering so much information that I wish I had taken a audio recorder with us. I still am processing some of the things he told us and that is my job for the next 6 months until we see him again. Just to try to process and understand what we are dealing with.
I think as parents we always try to see the bright side of things when it comes to our kids. Of course, I walk in the office like I know it all because I am an "expert" on Kendal, as the doctor repeated several times. I noted to the doctor that she was obviously higher functioning than most AS children and that she obviously doesn't have any mental retardation or the seizure issues that so many have. I think I apparently came off disillusioned because he spoke first and foremost about what we are dealing with and stressed that we needed to prepare for the following: she probably won't ever talk, she won't be able to read, she won't be able to write, she won't be able to be unsupervised, and that she probably won't be able to live on her own. I have read all these things anyway on the computer concerning AS but when a specialist in the field tells you face to face to seriously prepare for this, it is quite shocking and out of this world. I kept telling myself, "you're not talking about my child".
Kendal was diagnosed in February 2008 and I can't believe I am still fighting denial in some areas with Kendal. Of course, I am extremely pleased and proud of her progress in the two years that she has been in therapy, but I guess I always thought in the back of my mind that maybe she would be healed. The doctor emphasized the importance of hope but didn't want us to be unprepared with the probabilities that we could be facing.
I am deeply saddened in a lot of ways.
I hate AS because of what it has taken from my daughter, but thankful for AS for making her who she is. Does this even make any sense?
The doctor had spoke more than once about this being a marathon not a sprint. I think he could tell that we are just tired. He emphasized the importance of me and James spending time together away from Kendal and I agree that we need to invest in us to better be there for Kendal. I have a major problem though asking for help. Both my mom and dad raised me to be independent and take care of my own business, so I have never been one to ask for much help (my dad might disagree with that statement!), but I will have to learn to let people in, because I am not sure how much more I can take at times.
The doctor wasn't all doom and gloom though. He really liked some of the things Kendal was doing - she was very sociable and maintained eye contact and was good with social cues. He strongly suggested we begin to work with a behaviorist. We will have to see if we can even fit that in our schedule in the future - at this point there is no time for it. Despite all the things that we again didn't want to hear, nothing has changed. Kendal is still the same Kendal despite the realization that she might never be miraculous healed - that might not be God's plan for her.
I guess when it all comes down to it I am not worried about Kendal. She has two parents that absolutely adore her and will make sure that she is always well taken care of. I think just letting go of some of our dreams for her, or maybe just changing some dreams we had for her. I continue to pray for peace and letting go of these stupid old dreams for her that I carry around in my head. My new dream for her should just be that she live a joyous and wondrous life. Now that's a good dream for our children.
On Tuesday we took Kendal to her new geneticist. This doctor is mainly a research doctor that only sees patients two days a month. He spends the rest of his time doing research mainly on Angelman Syndrome and research on gene therapy for genetic disorders. Both me and James really, really liked him. He was very personal and easy to talk too; which, for a geneticist is pretty unique. He spent over two hours with us covering so much information that I wish I had taken a audio recorder with us. I still am processing some of the things he told us and that is my job for the next 6 months until we see him again. Just to try to process and understand what we are dealing with.
I think as parents we always try to see the bright side of things when it comes to our kids. Of course, I walk in the office like I know it all because I am an "expert" on Kendal, as the doctor repeated several times. I noted to the doctor that she was obviously higher functioning than most AS children and that she obviously doesn't have any mental retardation or the seizure issues that so many have. I think I apparently came off disillusioned because he spoke first and foremost about what we are dealing with and stressed that we needed to prepare for the following: she probably won't ever talk, she won't be able to read, she won't be able to write, she won't be able to be unsupervised, and that she probably won't be able to live on her own. I have read all these things anyway on the computer concerning AS but when a specialist in the field tells you face to face to seriously prepare for this, it is quite shocking and out of this world. I kept telling myself, "you're not talking about my child".
Kendal was diagnosed in February 2008 and I can't believe I am still fighting denial in some areas with Kendal. Of course, I am extremely pleased and proud of her progress in the two years that she has been in therapy, but I guess I always thought in the back of my mind that maybe she would be healed. The doctor emphasized the importance of hope but didn't want us to be unprepared with the probabilities that we could be facing.
I am deeply saddened in a lot of ways.
I hate AS because of what it has taken from my daughter, but thankful for AS for making her who she is. Does this even make any sense?
The doctor had spoke more than once about this being a marathon not a sprint. I think he could tell that we are just tired. He emphasized the importance of me and James spending time together away from Kendal and I agree that we need to invest in us to better be there for Kendal. I have a major problem though asking for help. Both my mom and dad raised me to be independent and take care of my own business, so I have never been one to ask for much help (my dad might disagree with that statement!), but I will have to learn to let people in, because I am not sure how much more I can take at times.
The doctor wasn't all doom and gloom though. He really liked some of the things Kendal was doing - she was very sociable and maintained eye contact and was good with social cues. He strongly suggested we begin to work with a behaviorist. We will have to see if we can even fit that in our schedule in the future - at this point there is no time for it. Despite all the things that we again didn't want to hear, nothing has changed. Kendal is still the same Kendal despite the realization that she might never be miraculous healed - that might not be God's plan for her.
I guess when it all comes down to it I am not worried about Kendal. She has two parents that absolutely adore her and will make sure that she is always well taken care of. I think just letting go of some of our dreams for her, or maybe just changing some dreams we had for her. I continue to pray for peace and letting go of these stupid old dreams for her that I carry around in my head. My new dream for her should just be that she live a joyous and wondrous life. Now that's a good dream for our children.
Saturday, December 13, 2008
A Busy Week
This past week has been busier than normal with Christmas approaching. We have alot lined up in the next two weeks but I will try to stay diligent in posting new entries of what we're doing.
Speech Therapy went great both Monday and Wednesday because Kendal is making new and different sounds. This is truly a blessing and makes us so much more appreciative of any progress she makes. Physical Therapy also went great and Kendal really seemed to enjoy it more this week than she has in the last two weeks. We didn't have Occupation Therapy this week due to the snow/ice we received Thursday night/Friday morning. Both me and Kendal were glad for the break because we both got to sleep in. I got to sleep till 6:00 instead of 4:45. It was wonderful.
We have yet to get Kendal anything for Christmas. I'm hoping to get out today and do a little shopping. She is a little hard to buy for because she does not like a lot of "age appropriate" toys yet. It has been suggested that it is a good time to begin to introduce toys that encourage imaginative play like dolls, play kitchen, etc. I know that her grandmother is buying her a doll this year and I am anxious to see how Kendal reacts to it. I see little girls all the time carrying around their baby dolls and that has never been something that Kendal has been interested in. Hopefully now, she will engage in more imaginative play. Me and James have talked about possibly getting her a trampoline or something to bounce on. She is learning to jump and she really has fun bouncing. Beyond that, we have no idea what to get her. Typical girl I guess - hard to buy for!
Speech Therapy went great both Monday and Wednesday because Kendal is making new and different sounds. This is truly a blessing and makes us so much more appreciative of any progress she makes. Physical Therapy also went great and Kendal really seemed to enjoy it more this week than she has in the last two weeks. We didn't have Occupation Therapy this week due to the snow/ice we received Thursday night/Friday morning. Both me and Kendal were glad for the break because we both got to sleep in. I got to sleep till 6:00 instead of 4:45. It was wonderful.
We have yet to get Kendal anything for Christmas. I'm hoping to get out today and do a little shopping. She is a little hard to buy for because she does not like a lot of "age appropriate" toys yet. It has been suggested that it is a good time to begin to introduce toys that encourage imaginative play like dolls, play kitchen, etc. I know that her grandmother is buying her a doll this year and I am anxious to see how Kendal reacts to it. I see little girls all the time carrying around their baby dolls and that has never been something that Kendal has been interested in. Hopefully now, she will engage in more imaginative play. Me and James have talked about possibly getting her a trampoline or something to bounce on. She is learning to jump and she really has fun bouncing. Beyond that, we have no idea what to get her. Typical girl I guess - hard to buy for!
Friday, December 5, 2008
New Progress!
This week has been a slow week as far as entertaining activity. We have continued our daily routines as this week completely flew by. In the last 2-3 weeks, Kendal has made tremendous steps in her vocal abilities. She has finally discovered her tongue can move in all different directions (see video)! Of course this is a huge deal because we all know that until you move your tongue, you're not going to get many sounds. For the last several months we have been working with her to try to stick out her tongue (we actually encourage her to do this, I know it sounds strange). Not only that, she has begun blowing air while moving her mouth to start making the "ththth" and "dadada" sounds. Yes, this progress is truly amazing!
Subscribe to:
Posts (Atom)