Tuesday, December 22, 2009
Merry Christmas!!!!
It certainly has been a busy season for our family. Since November we have been on the move! Cameron started a new job here in Jacksonville at a local law firm and is enjoying it though it keeps him busy and away from home. we celebrated Carley's fifth birthday the weekend after Thanksgiving and then onto other Christmas festivities at church and school. We went to Tampa last weekend to see Santa and Mimi and Papa. It was a fun time and the girls are gearing up for Christmas in Greenville with Nana and Papa at the end of this week. We are looking forward to cooler weather and visiting with cousins, aunts, uncles, and grandmas!!!!!we will probably eat and open a few gifts and play!!!!I hope it snows just one day while we are away. Caroline and Carley are both healthy this week and we should be able to stay away from the doctor at least until January. Caroline has started to nod yes and answer our yes questions. it is comical at times. She also will say a yah!!!!to go along with it if it strikes her. She is a joy and still pleasant most of the time. Carley is very independent and loves our attention. She is five and loves Olivia the pig character and has imaginary friends from the show. She openly tells us they are imaginary which cracks me up. She also is quite the artist and pretty much only desires to create and improvise with all her toys. I am thankful for God's provision in our lives even if it is not what I would have chosen. We are here and learning to make friends and memories here. Cameron has a stable job and we are healthy and have a lot to remember and reflect on as another year comes to a close. May you and your family experience HIS true PEACE and blessing on your life.
Wednesday, December 2, 2009
SICK girl
Poor baby!!! Doc on Monday just a regular old bronchitis and low grade fever....I thought not. She sounded and acted too sick. So after two more days I decided to go back. She was worse. Double ear infections. RSV. So She is on treatments every four hours and a new antibiotic and I hope better Please pray Caroline gets well quick...these respiratory infections and viruses are a serious matter in these mosaic babies. Please pray her lungs clear and that theses meds work!!!
All thanks be to God our ultimate healer and sustainer in our time of need.
All thanks be to God our ultimate healer and sustainer in our time of need.
Tuesday, December 1, 2009
Grateful Hearts - MRI
It is time to post and time to reflect on all God continues to do. I am amazed by His Love and guidance and constant provision even when I think things might be better another way.
Currently, Caroline is very sick with bronchitis and we are doing breathing treatments around the clock.. I have never seen her this congested or crabby and I guess if the medicine is not working back to Dr. Mary we will go!!!! I hope she gets to feeling better soon.
We had a very nice Thanksgiving at home with my sister and brother in - law and Mimi and Papa. The food was delicious even though I did not really contribute between caring for Carley and Caroline. I decided to set the table and clean up. I did go shopping for all of the yummy things and cleaned my home, but did not contribute to the great feast too much.......But I am truly grateful for my family and our health that we should not take for granted one single day.
I always want to let you all that read our blog occasionally about what goes on and how God continues to work.
Cameron has a new job and it is here in Jacksonville. He is the executive director of a law firm. He loves it and it came at a great time. With the ever changing economy things really slowed down at his last job. I say this came out of the blue, but the Lord orchestrated the timing. Caroline will lose her services in July for all therapy. We will be financially responsible with only 20 visits approved with the new insurance for her therapy. That covers only five months of her therapy out of the calendar year with a co -pay. After the five months we will may more than a co-pay. So the new job will allow us to keep up with Caroline's doctors and therapy even though the insurance coverage is not superb. The new company pays our family premium which in turn will allow us to cover therapy and doctor visits. It is always scary for me to change insurances since I work at home. I hope for good coverage and for the likelihood to not have to change doctors for Caroline's sake. It is like starting over if you have to do that. So at least we know what is for casted and how to prepare for her needs. The new insurance is also the same health care company we currently have!!!!!It is no accident and a blessing!!!!
Cameron works longer hours and is very busy, but we get no middle of the night phone calls anymore and he never has to go in on a Saturday or a Sunday.
MRI report
We had an MRI a month ago and i am just now posting details.
in a nut shell her scans were clear and easy to read. She has no current seizure activity, but large ventricles for her age and this signifies an immature brain. She has scarring on her frontal lobes both left and right. This is not a shock to me because I know form our other mosaic families that these kiddos brain are not like ours. Her scarring indicates possible apraxia and delayed verbal speech. Maybe somewhere around that of an 8 month old in verbalization, but not understanding!!!!! Physically she is greatly handicapped in walking, crawling, and pulling up, but mentally in other areas she is at an 18 month old in most of her development. She is able to verbalize about 5 words now and can sign and recognize 25 signs. The geneticist said to do as much signing as possible. She is able to communicate with us most of the time and is able to understand and comprehend things. There are different areas of the brain that work to use signing, mirroring, and verbalizing!!!!! She loves books and wants to be read to all day long!!!!!!
The scarring in her scan can be from a loss of oxygen in utero or just a part of her genetic syndrome. we will never really know, but that does not change God's plan or power to work in Caroline's life. We love each and everyone of you and wanted to bring you up to speed in our fun adventure filled lives. May you be filled with His peace this season!!!!!!
Currently, Caroline is very sick with bronchitis and we are doing breathing treatments around the clock.. I have never seen her this congested or crabby and I guess if the medicine is not working back to Dr. Mary we will go!!!! I hope she gets to feeling better soon.
We had a very nice Thanksgiving at home with my sister and brother in - law and Mimi and Papa. The food was delicious even though I did not really contribute between caring for Carley and Caroline. I decided to set the table and clean up. I did go shopping for all of the yummy things and cleaned my home, but did not contribute to the great feast too much.......But I am truly grateful for my family and our health that we should not take for granted one single day.
I always want to let you all that read our blog occasionally about what goes on and how God continues to work.
Cameron has a new job and it is here in Jacksonville. He is the executive director of a law firm. He loves it and it came at a great time. With the ever changing economy things really slowed down at his last job. I say this came out of the blue, but the Lord orchestrated the timing. Caroline will lose her services in July for all therapy. We will be financially responsible with only 20 visits approved with the new insurance for her therapy. That covers only five months of her therapy out of the calendar year with a co -pay. After the five months we will may more than a co-pay. So the new job will allow us to keep up with Caroline's doctors and therapy even though the insurance coverage is not superb. The new company pays our family premium which in turn will allow us to cover therapy and doctor visits. It is always scary for me to change insurances since I work at home. I hope for good coverage and for the likelihood to not have to change doctors for Caroline's sake. It is like starting over if you have to do that. So at least we know what is for casted and how to prepare for her needs. The new insurance is also the same health care company we currently have!!!!!It is no accident and a blessing!!!!
Cameron works longer hours and is very busy, but we get no middle of the night phone calls anymore and he never has to go in on a Saturday or a Sunday.
MRI report
We had an MRI a month ago and i am just now posting details.
in a nut shell her scans were clear and easy to read. She has no current seizure activity, but large ventricles for her age and this signifies an immature brain. She has scarring on her frontal lobes both left and right. This is not a shock to me because I know form our other mosaic families that these kiddos brain are not like ours. Her scarring indicates possible apraxia and delayed verbal speech. Maybe somewhere around that of an 8 month old in verbalization, but not understanding!!!!! Physically she is greatly handicapped in walking, crawling, and pulling up, but mentally in other areas she is at an 18 month old in most of her development. She is able to verbalize about 5 words now and can sign and recognize 25 signs. The geneticist said to do as much signing as possible. She is able to communicate with us most of the time and is able to understand and comprehend things. There are different areas of the brain that work to use signing, mirroring, and verbalizing!!!!! She loves books and wants to be read to all day long!!!!!!
The scarring in her scan can be from a loss of oxygen in utero or just a part of her genetic syndrome. we will never really know, but that does not change God's plan or power to work in Caroline's life. We love each and everyone of you and wanted to bring you up to speed in our fun adventure filled lives. May you be filled with His peace this season!!!!!!
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