I don't know about anyone else but these weeks seem to be flying by...in a blur for me. Each week is similar to the last, physical therapy twice a week, Early Intervention once a week and much awaited beach days on the weekend. Each day is filled with juggling work, appointments and reminding myself to breathe. Sometimes it is overwhelming and I find that the day has gone and I haven't eaten lunch or stopped running until bedtime. This isn't much different than anyone else's schedule I know and I am sure I am not alone when I just don't know how to get it all under control and organized.
Bella is my priority yet I have another child, a business and a household to keep up. I want to be the best at each of those but the reality is, I fall short. Sometimes at work I look at the things I need to complete and I just feel like it is so unimportant in comparison to the needs of my daughter but that is not entirely the case, lets face it, unless I become independently wealthy (unlikely since I don't even buy lottery tickets) I have to work along side my very hardworking husband, and I have to be successful at it to provide the things I want my children to have.
I also want to be at Bella's appointments. I have so many offers of help where people will offer to take Bella to physical therapy so I don't have to leave work, but I just can't do that. I need to be there with her, I need to go through each and every thing I expect my 2 year old angel to go through. I don't want her looking around asking "where is my mom?" And let me tell you physical therapy appointments are NO FUN.. Bella dislikes it, no, let's call it like it is... Bella HATES it. As soon as she gets in the building she starts to cry. And as soon as she starts her session she screams, and screams and yup... screams until its over. Her therapist believes she is frustrated, which I do agree with but I want so much for her to use these sessions to the fullest, I feel her fighting it is going to set her back. Its a constant feeling of "beat the clock" for me, like there is no time to waste. She is making progress but it is slow.. almost painfully slow. We have been told she is getting stronger through her hips and that it takes much less facilitation from her therapist to do some of her "work out".
Upon the suggestion of a family friend I asked her therapist about the possibility of a "walker". Bella is too big for the baby walkers they sell in the stores but I was told of a piece of equipment called "Kid Walk". It is a medical device that is used by kids who aren't walking due to a medical condition. Bella's therapist is going to get one in and we are going to try her in it.. I am hoping it will be something she likes. I would love for her to get the feeling of independently "walking" and moving around. I think she is tired of sitting, I know I would be. Her therapist also believes her frustration comes from the inability to communicate to him how she is feeling during her session. I can understand that..so he is going to consult with some speech/communication colleagues to find some ways to communicate with Bella. Perhaps picture boards which she can point or tap to show him what it is that is going on with her.
Early Intervention went better this week, she was very interactive and did a lot imitating sounds and actions (patting, some sign language). I still feel like there should be something more substantial with her speech therapy and I am not sure I am all that satisfied on that front. I am anxious to go to Boston to see what else is out there. I just feel like currently they really aren't doing much more than we already do as her parents and family.
Speaking of Boston, I called the center and had to leave a message, that was Thursday, didn't hear back Friday so I will call everyday next week until I get someone so we can get an appointment. I have a feeling that it is not going to be that easy or quick to get in there.
I have a lot of high hopes for Boston, maybe too high. I know there is no miracle cure right now but I just feel like we will get more progress with what they offer.. who knows?
We had another wonderful day at the beach today. Bella and Zack had a ball, as usual. Bella ate ALL day. That is something else we have noticed a change in.. her appetite is wonderful. She rarely says no to food and I truly believe she has gained some decent weight. She even has "chunky" little thighs.
She has also been very happy.. very, very smiley and that warms my heart. When she was going through what I believe was her "regression" period.. it was so awful, there was such a void when you looked at her or tried to interact with her. I am so thankful that period is over..for better or worse..she is our happy little ray of sunshine again. And for that I am grateful.
We still have our sleep issues... as I write she is up in her crib fussing and fighting sleep. I need to ask the doctors about that for sure..that is something I really want to get a handle on. She so needs her rest so she can stay strong and fight through whatever is in front of her.
So another week is over and another one is ahead.. that is the way of things. So I take a deep breathe and push on forward.. one day at at time.
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