Scooting!

Caroline is on the move. She has discovered a way to move toward her toys. She has given up on rolling and has decided to scoot while sitting upright. She rocks on her bottom and scoots many inches at a time. She is also reaching really nicely across her body and side to side. We have to figure out to teach her to crawl. She can support head weight on arms, but she can not support her abdominal and hip weight at all. She is in her stander twice a day for 30 - 40 minutes. I am so excited of her progress as it is many months and times go by with little or no change in the direction of moving forward. I know I should not measure Caroline or myself in this way, but it is really hard and I think maybe a part of my human nature. I know it is not up to me as much as I want her to grow and achieve these milestones for the both of us. But most days I do feel responsible when little progress is not attained. Like I am being lazy or not doing enough for her. Thank you to many friends who support me by prayer even on the hard days and even when I do not know you are thinking of Caroline. Much love.

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.

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.

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!!!!!!

Weekend Warrior "The adventures Begin"

The adventures have begun as a weekend warrior with the kids. Kim is away from Thursday night through this weekend and I am playing with the kids.
Today was my last day at Ameri-Force and I made it my last day today so that I could have Friday off to be with the kids while kim was away at a womens retreat. I start my new job on Monday.

The adventures have already begun with kids.
Kim left the house tonight at around 6pm. I was running late getting home because I went and got my hair cut.

So unfortunatly we did not have much time to prep before kim headed out the door.

It was ok though because I am a professional at this. She also left me many lists

I have to tell you this staying at home thing is much harder than it looks.

Tonights activities.
Eat dinner, brush teeth, get ready for bed, give caroline her breathing treatment, give carley a drink, read caroline a bedtime story, lay caroline down for bed,
Then color with carley, off then she helped me pick up the toys, and it was brush teeth time, read a story and time for lights out.

After all that I had a kitchen full of dirty dishes, wet clothes in the laundry, towels that had been folded that needed to be put away, toys in the living room, and a dog that needed to be fed.

Holy moley. This is nuts how do people do this. I have so much respect for kim.
She is an amazing wife and does a great job to get all of these things done without complaining.

I am sure I will have many funny stories over the next few days...

Stay tuned....

I survived the first night and it now 11:28 pm and I am just sitting down.

Caroline's MRI and PT

Caroline had an MRI at Wolfson Children's hospital here in Jacksonville. We waited for three hours, but insurance covered her procedure and we were able to sedate her without a needle and anesthesia. She did great. Waking up from an oral med took longer, but was better for her. She was asleep during the MRI and it went fast. I think only 25-30 minutes. She is always good at hospitals and with the medical staff. We should have results 1-2 weeks . We will need to meet with the geneticist to read the MRI.
We greatly appreciate your prayers and thoughtfulness as we continue on this journey with Caroline. God has really provided for us and her care the whole time we have been in Florida even during the unknown times. We look to Him as the author and finisher of our faith in good times and bad. We give Him all the glory in our lives.
Today at PT Caroline worked really hard. We were able to support her enough to get her into a crawling position and she could rock on her knees and arms while we supported that heavy head!!! I always tell her that she has a lot going on in her head and that is why it is heavy for her to hold up. What joy to her her hum and attempt to sing her letters to the abc tune as well as Row, Row, your boat.... She is able to vocalize a few words clearly: Pablo, Papa, Mama, Dada, and up. She signs occasionally when she finds it necessary!!!!!

Carley

Carley is home sick today. I think we have been sick and thought it was just allergies and then a cold. She is fever free today. we went to the dr. yesterday and now have 4 medicines to take. She has walking pneumonia, cold, and enlarged tonsils. we are on an antibiotic and breathing treatments 3x a day. She will be checked again tomorrow to see if she is breathing better. I can tell her coughing has already improved. Caroline is well - praise the Lord!!! She has pre-op appointment tomorrow before her MRI. Cameron and I are all well today too!!!!! I am rested. We are staying home all week...Carley will not go back to school until Monday. So we are getting caught up around here and having a little fun. We all ate a hot lunch today. Carolin had a good nap at home in her crib - what a novel idea!!!! I even have dinner cooking in the crock pot. Stay at home days are wonderful!!!!!