Sweet Sounds

We are changing PT this week. We finish our therapy at Wolfson on Wed. and will go to Brooks Therapy on Thursday for our evaluation. Early Steps is finally will be picking up the PT and Speech therapy too! Caroline has her speech evaluation tomorrow. So the good news is we are adding speech therapy and it will be in home. I will have to drive to PT, but it will all be covered by Early Intervention now. Speech therapy comes at a perfect time. Caroline has really started to babble in the past week and I starting to eat table foods. She show an interest in all food and likes everything we have tried. She is still working on self feeding things slip right out of her small fingers before they pass her lips, but she is a trooper!!! So I babble back to her and all day she has been rambling, but finally is saying Da---da----da---da!!! I grabbed the camera just to see if she would repeat me and she did!!! So Cameron got to hear it via video after work tonight.! This is a huge personal praise to me. I am convinced she will talk though it will not be on my time table no matter how hard I try and work. I wish you all could see the warm smile she gives, and her happy countenance when she is babbling and playing patty cake!!!! I am impatient and want Caroline to get everything she needs, but it has taken almost 90 days to get Early Steps to pick us up. We have also been batteling insurance coverages since our move. Every claim that is filed for milk, pump bags and surgery have been rejected. We are still waiting for final bills from doctors and ENT surgery. It should all be straightened out soon. Cameron calls once a week. God is faithful and continues to supply all of our needs even in the midst of frustration.

GI/Pulminology at Nemours

We went to meet to of our new doctors at Nemours Children's Clinic. The organization of the hospital is wonderful. There are always new things to adjust to with new state laws and insurance. I was disappointed to see my new doctors did not have Caroline's paperwork from Charlotte. We have to change her Mickey button every 4-6 months and I usually do it at home. Typically we get a script and our health care company delivers one along with her milk and food pump bags. Here in Florida the GI doctor says we have to set up an appointment with surgery center to measure the length of her button and they will replace it. So they will charge me a surgery charge instead of a co- pay even though it is not surgery. So I do not have an extra mickey button at home after this one. They also would not let me schedule it at the GI office so I am having to learn all of the red tape here. It does not set well with me and all new doctors and new rules. It seems a way for them to get more money. We went to pulminology and really do not have to go back unless needed. he tried to give me a new asthma medicine and a spacer inhaler and I told him we did not need a new way to treat her or new meds. So once again they tried to get more money. What we have is fine and I can get refills from the pediatrician. These doctors are older and were not interested in us as a person or Caroline's syndrome. They simply wanted to treat symptoms. So I am trying to get a script from our NC doctor and get a mickey button sent home for me to place for free. If I get an extra one we will not have to go to the surgery center for about 7-8 months. I like the orthopedist the best!!!!
Two new things we have learned that Caroline may need to go to the dermatologist so we know about her heat and sun exposure risks. Her cafe au latte spots are worse here in the heat. She also needs Gatorade during the day to replace all the sodium that she sweats out. So I can give her Gatorade through out the day in small doses.
On a lighter note, our really good friends from Texas are coming to visit. We are too excited and plan to do lots of fun things during the next five days.

1 year old!!!

Sweet Caroline went to her 1 year check up today. The nurse and doctor were so sweet and spent an hour and a half with us. Dr. Shannon called in her ear drops and pulmicort meds to keep on hand. She weighs 14.9 ounces so big!!!! They wanted to give three shots, but we settled on one. They were very supportive. We also decided to go see a new pediatrician that specializes in in special needs children. Her name is Mary Soha and we will work on transferring records, shot record, and insurance. Caroline will see her in October for her 15 month check-up. I have also met two new friends who are very sweet and kind. I look forward to some down time in August with the girls and no doctor appointments. We will go to pulminology and GI on Thursday morning and then we will just do physical therapy. We are still hoping Early Steps will pick up the pace and evaluate Caroline for all three therapies. We will not have to pay babysitting for Carley and not drive twice a week to therapy if this happens. We will start speech in August at the Wolfson Mandarin Children's Center where we attend PT.

A time of Celebration

We had a fun filled Fourth of July and a birthday bash for Caroline. We had 18 people who came and traveled far and wide to see Caroline . All of our guests were family: aunts, cousins, great grands and regular grands etc..... sisters. Cameron's family came down we took pictures, ate , played outside, shot fireworks, swam and went fishing with the three year olds. Carley actually took a nap everyday too! I will get Cam to post pics of the birthday and the fourth. Caroline's cake was a cupcake for our Sweet Caroline theme. My mom, dad, and sister also came for the day. We so appreciate the phone calls and thoughts from many friends who could not be here! Nana and Aunt Jenny helped prepare the food for the cook out and Uncle Stephen grilled out all the meat and cleaned the grill!!!! Cody and Carter traveled the longest with an 8 hour drive on July 3rd and a 10 hour drive home yesterday!!!! Much love and appreciation!!!!! We give honor and glory to God for each milestone we have celebrated.

Orthopedist

We met Dr. Loveless today. The office staff were exceptionally nice. We discussed every limb on Caroline's body and looked closely at every crease etc... We had an x-ray of her spine and hips and all looked well. She does have a 16% curvature of the spine which is not a concern at this pint in time and can be positional due to being a less active baby with low muscle tone. We will go back in December just for a check up. he dos not think she needs a brace at this time or surgery so those are all good things to hear. Her hips are normal too even though she was breach and low tone. The question is, will her scoliosis get better or worse with time? We hope better, but will have to wait and see. He was pleased with her motor development and she has full range of motion in all areas, just low tone. he gave me two referrals to a special needs pediatrician and a new Physical Therapist in St. Augustine. So I have lots of decisions to make as far as therapy for the future. We are having lots of family in town this weekend for the fourth and Caroline's first birthday will be celebrated on Saturday. We are so gracious and thankful for so much support during the first year of Caroline's life!!!!! Love to each of you!!!!!!!!!!!!