I know that I am a very busy person. I'm not half as busy as some of the special needs parents that I know, but I do manage to keep a very crazy schedule. Some people do insanity training. I do insanity appointments and scheduling. Today is Sunday but I feel that I have lived a thousand weeks in one. Here is a peek into my crazy life:
Monday: I spent three hours on the phone. I like talking to people, but these were not deep enjoyable conversations. Cary needs new reflux meds and I spent thirty minutes arguing about getting them with no success. Then we have to schedule Marvin for evaluations because his school starts in about 2 1/2 weeks. I finally got in touch with the right people, plead my case, and had my concerns validated, but it took time and effort. Then I had to makes some calls because I am trying to surprise my husband with a ten year anniversary gift, but it will take time to put together. Amber had to leave early to take her child to the doctor and my husband began working pretty much nonstop because his work had a crisis so I was pretty much on my own. Not terrible, but I was ready for the day to be done.
Tuesday: I decided we needed a normal day where we could do something fun and not have to worry about therapies and appointments. I cancelled (gasp) PT and speech and we went to White Oak Lavender Farm. It was a long trip, but to take Marvin, his friends, and Cary and enjoy the great outdoors was well worth it. We started the day at 5am and it was past 10pm when all was said and done.
Wednesday: Feeding clinic. The one therapy I kept this week. It takes me an hour and a half to drive there, listen to everything I do wrong, watch Cary and the therapist fight each other to see who wins this week, and then head home. Cary clearly hates feeding and would rather live off of fairy dust, but she needs to eat so I go and watch how it is done, and try to use some of the techniques at home. It is not all bad and I have learned alot, but the godlike attitude drives me bonkers. I have learned to ignore it and deal.
Thursday: We drop Marvin off at my wonderful in laws and I head with Cary to Kluge clinic in Charlottesville. We are trying to get Cary off of most of her Early Intervention and in to outbound therapy. I look at it like this. The outbound kids are getting steak and potatoes and Cary is getting cat food. I have seen CP kids much worse off making so much more progress and all report using outbound as Early Intervention did not meet their child's needs. It is great to be able to do things in your home environment, but if the child is not making progress and you feel that they are perfectly capable, then you need to start asking questions. So after talking over things with a developmental pediatrician we are going to set Cary up for evals. It was a two hour meeting, but much was accomplished so I feel pretty good.
Friday: Cary got fitted for leg braces. When we went to equipment clinic they were horrified to learn that my PT never said she needed them. So we had the appointment. I am so glad we did. The woman who casted Cary said that in another month or two her feet would have locked in their position. Then she never would have been able to stand. She was enraged that I was not told my child needed these until about too late and then commented that she never was a big fan of Early Intervention. Let's just say it is a good thing that I will be getting Marvin to camp next week and not handling PT. My aid will be in charge of that. I am so angry at her right now. She knew and because she doesn't go the extra effort because she wouldn't get paid for it, my child nearly lost the use of her feet and legs!! I think it is best if I avoid her right now.
Then after that my husband calls. He wanted to know if I wanted to take a mini vacation. That night. We would drive and get away and come back late Saturday. I was about to say no it was too much and there was no way when my aid pipes up and says "We're heading home right now and I will have them packed and ready." I asked her if she lost her mind and she told me that I needed this and I would thank her later.
So we came back, packed and were on the road to Lynchburg by 6.
Saturday: After spending the night in a hotel with the kids and a defective pack and play we went to a farmer's market and craft fair. Cary smiled and blew bubbles at everyone and I enjoyed home made local chocolate and coffee. Then we went to Imagination Square. It is a children's museum. They graciously made some accommodations for Cary and we spent 4 hours playing, creating, and exploring. IT has a giant four story slide and a zip line. Marvin was in heaven. Cary loved it too.
Today: We meet our family to celebrate my mother in law's birthday at the Olive Garden. I am super excited to go out and give her the presents the kids made for her. Plus my house looks like it blew up so it needs a little TLC today.
Next week is another busy week, but somehow I adjust and manage. It is never dull and I probably wouldn't know what to do with myself if it was:). Soon school will start, I will be training for Partners in Policy Making and Cary will hopefully be in mostly outbound therapies. I am glad we had some time to get away and am super excited for the changes happening in our lives!