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!!!!

Genetics Visit 2011

We seem to have scheduled ourselves full this week. Caroline has only three specialist and two of her yearly visits fell this week. We will visit Ortho next month as well as the dentist. Today we spent almost an hour with Dr.Percyk. He is very patient and kind. It was exciting to see Caroline interact and talk to him although it has been 14 months since our last visit. We were able to view Her brain scan form a year ago and discuss new developments. She has lots of room for growth and some wide ventricles that are not completely shaped as ours....but he expressed the areas of damage are somewhat repairable with time and if she continues to progress she could regain 60- 80% of the damaged areas. Making connections and spurring her on to new things is encouraged.
yesterday we went to the ENT and things are good from a hearing perspective. She does have a cold and possible ear infection. I have a script in case we need it.
Caroline has been out of school all week and will return to her pre-school tomorrow. I also have and ESE meeting to get her accepted into speech and language services at her special needs school. I have decided I want her to only attend her private school next year and receive services within our neighborhood school. This will save me time and gas money. More importantly my peace of mind. Caroline does not seem completely happy at her other school. One day she will have to be there....but next year it is still my right to send her to a private school and receive therapies at no cost through the school system. So I think two more meetings to convey my thoughts. Pray that this will be a reality and bring us comfort.

School MEETING

Oh Wow! I seriously do not know how I am supposed to know and learn all these crazy rules and procedures of a special needs school. I have three things to determine and pray about:

1. If Caroline will continue as public school next year or only receive services there.
2. If I can apply and get her moved to Saint John's county so she can have both schools near.
3. And if she may receive language services in our neighborhood school.

I had a meeting yesterday with the speech pathologist, site coordinator, and classroom teacher concerning several things for Caroline. Her IEP goals are not appropriate so they will need to be changed...she is not receiving language services and I want her to be....and I just do not want her at that school until she legally has to be. But I cannot have my cake and eat it too.

If I get her approved for Saint Johns she may could receive therapy at her private school and have an ESE teacher check on her progress, but this is a dream and a shot in the dark....so more frustration and thinking!!!!!