This morning I woke up to an amazing sunrise. I sometimes miss the sunrise with so much going on but this time of year as it rises around the same time I do with such vibrant colors, it is hard to miss. So much is going on and yet things are still the same. God is still good, the sun still rises, and life goes on.
Sierra and Danika have decided to try a coop this semester. A friend of mine takes her daughter and offered to take the girls. It is only one day a week but it sure makes things a bit more challenging to stay on track with school. The girls are enjoying it and it is nice to have a day where I have been able to focus a bit more on the little ones.
We had a check up with Isabella's Developmental Specialist last month. When you only see someone once a year, and I am sure he sees many, many patients between us, it is hard for the doctor to remember your child. He had asked his usual questions and observed Isabella and encouraged me to get her to the new Geneticist. Isabella has made little progress since the last time we saw him and he was hoping the Geneticist might add new insight. It was odd because last year he had told me there was no need to see a Geneticist again unless we had more of an idea of what was going on. That we could do a hundred different tests and still have no answers. We had had testing done on her a while back for Angelman's and Retts Syndromes, which thankfully, she had failed. He had seen the test results a year ago and agreed that she did not have Angelman's Syndrome, but now he was thinking she did.
A couple days later the Geneticist office called me and told me of openings they had and could get Isabella in. They explained the the referring doctor really wanted her seen as soon as possible. I did not enjoy my last visit with the Geneticist, as it is terribly discouraging. It is their job to search for answer, but some of those answers are really hard, so I was not looking forward to this appointment. The meeting went as I had expected and they want to do more testing. Getting Isabella's blood last time was a bit of a nightmare. She doesn't understand what we are doing and it is terribly upsetting to the both of us. The Geneticist agreed with the Developmental Specialist, that it looked like Isabella has Angelman's Syndrome. She said there are different areas of testing and would like to continue down that avenue. As for an outlook for Isabella...she will be just as she is for the rest of her life. That she will never talk more then a few words and developmentally be as she is. She should live a long life unless there are complications with her seizures. This prognosis broke my heart. I think as parents we want the best for our children and to see that she may never be able to do more then she does now is very upsetting. Isabella cannot talk, feed, dress, or use the restroom herself. Living with a child with special needs, I want hope that things will get better. I want so much more for her. The doctor said that even if Isabella never tests positive on the blood test that all signs point to Angelman's and that would be her diagnosis regardless.
The one thing I want to hold onto from that meeting is the Geneticist said Miraculous things happen with these kids all the time. She said it several times and so that is what I am praying for... the miraculous things. Wether or not Isabella has Angelman's doesn't change my love for her or God's plan for her. I will continue to seek God's best for her life and pray that His will be done in Isabella's life. I spent several hours the other night researching Angelman's and there are many similarities but not all the characteristics fit Isabella. I am well aware that all these prognosis are on a spectrum and Isabella might not have all the characteristics. For now we just say she has Isabellaism and she is fearfully and wonderfully made by her Creator who holds her little life in His able hands. This I know for sure, God is Good and he is not surprised by what the doctors say or my weakness. He is good. Every new sunrise reminds me that he is still in control and loves to bless us with such beauties as the vibrant sunrise and our Isabella. God gives us what we need when we need it and I am so thankful for his faithfulness. What then shall I say, according to Romans 8:21if God is for me who can be against me. I shall not worry or fret. God bless you all and have a great day.
Alicia
Sierra and Danika have decided to try a coop this semester. A friend of mine takes her daughter and offered to take the girls. It is only one day a week but it sure makes things a bit more challenging to stay on track with school. The girls are enjoying it and it is nice to have a day where I have been able to focus a bit more on the little ones.
We had a check up with Isabella's Developmental Specialist last month. When you only see someone once a year, and I am sure he sees many, many patients between us, it is hard for the doctor to remember your child. He had asked his usual questions and observed Isabella and encouraged me to get her to the new Geneticist. Isabella has made little progress since the last time we saw him and he was hoping the Geneticist might add new insight. It was odd because last year he had told me there was no need to see a Geneticist again unless we had more of an idea of what was going on. That we could do a hundred different tests and still have no answers. We had had testing done on her a while back for Angelman's and Retts Syndromes, which thankfully, she had failed. He had seen the test results a year ago and agreed that she did not have Angelman's Syndrome, but now he was thinking she did.
A couple days later the Geneticist office called me and told me of openings they had and could get Isabella in. They explained the the referring doctor really wanted her seen as soon as possible. I did not enjoy my last visit with the Geneticist, as it is terribly discouraging. It is their job to search for answer, but some of those answers are really hard, so I was not looking forward to this appointment. The meeting went as I had expected and they want to do more testing. Getting Isabella's blood last time was a bit of a nightmare. She doesn't understand what we are doing and it is terribly upsetting to the both of us. The Geneticist agreed with the Developmental Specialist, that it looked like Isabella has Angelman's Syndrome. She said there are different areas of testing and would like to continue down that avenue. As for an outlook for Isabella...she will be just as she is for the rest of her life. That she will never talk more then a few words and developmentally be as she is. She should live a long life unless there are complications with her seizures. This prognosis broke my heart. I think as parents we want the best for our children and to see that she may never be able to do more then she does now is very upsetting. Isabella cannot talk, feed, dress, or use the restroom herself. Living with a child with special needs, I want hope that things will get better. I want so much more for her. The doctor said that even if Isabella never tests positive on the blood test that all signs point to Angelman's and that would be her diagnosis regardless.
The one thing I want to hold onto from that meeting is the Geneticist said Miraculous things happen with these kids all the time. She said it several times and so that is what I am praying for... the miraculous things. Wether or not Isabella has Angelman's doesn't change my love for her or God's plan for her. I will continue to seek God's best for her life and pray that His will be done in Isabella's life. I spent several hours the other night researching Angelman's and there are many similarities but not all the characteristics fit Isabella. I am well aware that all these prognosis are on a spectrum and Isabella might not have all the characteristics. For now we just say she has Isabellaism and she is fearfully and wonderfully made by her Creator who holds her little life in His able hands. This I know for sure, God is Good and he is not surprised by what the doctors say or my weakness. He is good. Every new sunrise reminds me that he is still in control and loves to bless us with such beauties as the vibrant sunrise and our Isabella. God gives us what we need when we need it and I am so thankful for his faithfulness. What then shall I say, according to Romans 8:21if God is for me who can be against me. I shall not worry or fret. God bless you all and have a great day.
Alicia
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| Our Belly Bear |
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| such a work of art |
She is so beautiful! We will pray many blessings upon her life! Miracles happen everyday!
ReplyDeleteThank you so much. Prayers are greatly appreciated. :)
DeleteYou are so amazing Alicia! I've always been so inspired by the love, prayer, and guidance you pour out to each of your children. Isabella (and all of your kids) are truly blessed to have you as their mom! Thank you for your willingness to write about such a sensitive topic...this touches Alex and I deeply and please know we are praying all the more for our sweet Isabella and for you and David as you journey with her. Thank you for reminding all of us of God's goodness in all things and at all times. We love you!
ReplyDeleteThank you Ivy. I really appreciate your encouragement. :)
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