Caroline is back to school.....

We seem to have been a bit more busy than the school year. I think we have been to the pool once a week and a play date with friends once a week. Carley has been taking art classes daily for three weeks. She absolutely loves them. There is a lot of planning and painting and sculpting going on. Our sweet friends also have a pool in their back yard and we have been there alot.
It is cloudy and rainy here, but we have a day planned to dress like cows and go to Chick - fil - a.
Caroline went to summer school this week and seems to be happy. This has allowed me to grocery shop and go to the dentist and spend a little time with Carley too!
Caroline plays outside, paints, plays inside the sensory room and takes a nap. I pick her up around 2:30pm. Cam has been kind enough to drop her off so we all do not have to be ready!!!!
we have an orthopedic appt coming up next Monday and a birthday next Tuesday!
Caroline is working on standing and sitting and really starting to bear weight more on her legs. She is getting therapy at school as well as private PT twice a month.
we are not having a big party this year and have hopes of starting a special needs trust for her which will allow Caroline to have the best possible care in the future if she outruns us! It is a high start up cost and we are using birthday party money toward her fund. Please be in prayer for our SSI approval. We were denied once and I have researched more information and am going to apply four times in a row and then higher a lawyer to see about obtaining financial benefits for medical care and costs for Caroline. It is a long process and quite tedious on my part.
We have hopes of ordering a device that will help her crawl which runs $550.00 and she is no where near potty trained so we constantly need diapers. She also takes two meds that run 55.00 a month. We will also need to get a wheelchair in the next two years that can be 2-3,000. I never thought she was expensive, but SSI would cetrtaintly allow us to help her more and maybe add more private therapy. I would love a date night once a week as Cam's job and Caroline's condition often can take a toll on everyday life as tasks become burdensome and cumbersome as she does not walk. Please pray for my daily strength and care I give to my girls. I want to portray Christ's love and actions even on the weary days.Just wanted to update family and friends on our ideas and goals for Caroline in the coming days.

Summer is off with a bang

We have already had a lot of fun since school has been out. My favorite part is that I am not rushing my kids out the door and I can enjoy them in the morning along with my cup of coffee. Caroline is really funny when she wakes up and wants you to come get her out of her bed. She says Hi and Up and Help and mommy until you come. we are only doing private pt this summer. Caroline will also attend a three week special needs program at the public school and she will receive speech, pt, and ot. Our two new goals are potty training and standing!
Her speech is coming along some of her new words are go and car almost everyday...she seems to be bored of she is stuck at home all day!!!! This week it was "malmart" and "mummy!!!" That is for walmart and money. She is making lots of connections and this makes my heart happy.
Yesterday I took Carley bowling and to lunch while Caroline stayed with Miss Catheleen.
We have been to Orlando for a few days with friends at a condo. We swam and played and had alot of fun too!!!Carley tried the trampoline attached to a bungy and rode the big water slide multiple times with her friend Merci.
We also have official library cards ...I can't believe it has taken me this long for them to get books and free mid movies....they had a ball. today we are running a few errands, but the wild fires and smoke are bad enough to keep us indoors.
Today is also our eleventh anniversary!!!! Happy Anniversary Husband!!!!

Spring

Tummy Bug

So Just when we thought we were settling in....Cameron stated with a terrible horrible virus that ended after three days and a trip to ER for dehydration. He just returned to work today. I tried to totally sanitize the house hoping for the best....that we would all dodge the bullet, but alas we all ended up with a touch of it compared to Cameron. Caroline and Carley are still recovering and I just have a stomach that flops today. It seems the best thing to do is sleep many many hours consecutively to feel any ounce of energy. Carley had a three hour nap today. I had no nap. And Caroline had a two hour nap nearly after waking this morning. The hardest thing for me is to not see her cheerful smile. It is also hard to tell if she is tired from her new medication or from being sick with two viruses back to back. I am not looking forward to the numerous bills we will receive from each department and x - ray and radiologist involved. On the other hand our nurses and doctors were wonderful and did everything in a timely manner and really listened to me concerning Caroline's medical history and health concerns. We also found out we have a small hospital indemnity plan from Cam's work that will help pay a percent of days spent in hospital. Thanks be to God for always faithfully providing our needs. We have two groups of people who have really become God's hands and feet in our lives. Our SS class provided meals until I denied them at the onset of tummy virus. Then We had three friends make trips to the store to get cleaning supplies. food, snacks, gatorade, and meds. We feel loved and cared for down to every detail. Thank you special friends!!!!! We also have been blessed by our small group and friends made at Mandarin Presbyterian and Great Banquet Community!

More Seizures

I am disappointed to say the least....not in Caroline, but this virus and her sickness that has overcome our lives this week. It is ugly and heart wrenching. I am tired. I want us to continue in our old normal. I never anticipated this because I did not know how I would feel or how it could change us. I am fearful. I am loved and encouraged by the body of Christ! I am sad. Please pray for our family as it affects us all in different ways. Please pray that I will be able to allow me to trust people to help me with Caroline and my needs for relief.
I want her to walk and talk and laugh and be seizure free....those are my big desires for her little life. Caroline has been sick for a week now with a respiratory virus that has seemed to bring this on. we have been to two docs and ER and we may have to admit her for EEG and observation and blood panels since she is not recovering well. The seizures are becoming more frequent.
we do not want seizure meds unless absolutely necessary. Please pray for direction and wisdom.

Seizures.....what an ugly word

Spring Days

It is amazing how much our lives seem to depend on technology. We have been without a computer for two weeks and I feel lost without checking all the fun design blogs and mommy blogs. I also wanted to swnd an update here on Caroline. She is talking and starting to say two word phrases which is always music to our ears!!!! We have had several school meetings and so far I have decided ontwo things. She will be moved to the three year old class next year at Fruit Cove her private school. She will also attend summer school this summer for three weeks at her special needs school and have therapy and nap there while I am able to spend sometime with Carley and do her swim lessons, etc....I am leaning on pulling her from fall ESE next year and only having her receive free therapy there because she has not gained much from the whole environment. I lack one more meeting for next years plans.
Cameron and I were able to get away and spend much needed quality time with one another and our dear friends. My mom and dad graciously took care of my kids for four days. I am looking forward to next weeks visit from my college roommate. It will be so much fun!!!!!
We are really enjoying the spring weather here in Fl. Carley and I have been able to do some container gardeing in our back yard with cone flowers, sunflowers, and purple petunias. We hope our seeds sprout soon!!!!