I have received a lot of questions on how Cara is doing and I thought it was time that I post a general update:
We are still waiting to hear the results from her DNA tests. Our next appointment with the metabolic doctor is September 13. Hopefully we will finally have an answer, a diagnosis. Cara goes to therapy every week. She alternates between “land” and “water” therapy. She is responding well to both and to her home program. She is getting a little more head and trunk control everyday. Her endurance hasn’t improved and she has good days and bad days, but don’t we all? The biggest news is that she is starting to reach for and touch objects that she sees. It is very difficult for her to make the connection to reach for something she sees. Hand-eye coordination is an area that we knew she would have trouble in and we have been working very hard with her everyday and it is finally showing. She can actually hit the keys on her little piano! The first time she did it on her own and with purpose my eyes filled with tears of joy. She will look and focus on the piano first then move her hand and touch the piano and sometimes hit a key. You can see the concentration on her face and determination in her eyes. This little warrior is fighting with everything she’s got. It takes up so much energy but she is doing it. She is not even a year old and she fights like nothing I have ever seen.
Cara is getting stronger and working very hard to bridge the missing and broken connections. We are so proud of her! Natalie cheers her on, helps her touch her toys and joins the celebration when Cara reaches for something. Natalie plays an active role in Cara’s work at home and both of the girls love it. Both of Cara’s therapists and we are very excited in her new developments!
We bought her this seat: http://www.amazon.com/gp/product/B002WN2BZA (It is easier to just put a link than trying to describe it). It has been great! She can move herself by extending her legs and it gives her a little bit of exercise and leg work. It also has simple music and lights that help with learning cause and effect.
An orthotist came to her physical therapy session last week to take a look at her legs and feet. She’ll be getting braces that go from her foot to her knee and a little body suit this Friday. The braces are to try to keep her feet from rotating so much from the ankle so we can start doing more weight-bearing exercises without injury. The little suit is sort of like a mini wetsuit that will help support her trunk as well as aid in awareness of her center. She will only wear the suit during physical therapy and her home program.
The tube feedings are going well and I have started to give her cereal and pureed food through the tube. Right now she has a 6 inch tube connected to her stomach and on Sept. 14th she will switch it for a skin level port. It will make things easier for us as well as Cara. This first time changing the tube she will need to go under general anesthesia and they will do it via endoscopy. After that, it will be a quick visit to the doctor’s office or we can even do it at home.
Overall things are moving in the right direction and we are very happy to see the improvement.
Natalie starts preschool in September! She is ready for it and I know she’ll love it! She’ll also be sporting a tutu on Thursday afternoons and kicking a soccer ball on Saturday mornings. She loves music and dancing and anything sports. She is a truly amazing little girl and we are so thankful for her.
As far as how Dan and I are doing, we actually don’t like answering that question. We normally answer with the typical “we’re doing alright.” Like everyone else, we have good days and bad days. All of the time it hurts like hell but we manage. Let’s just say that we are doing as well as to be expected. The reality is too hard for us to talk about and too hard for people to hear. We get through the days by keeping our focus on what’s important, how Cara is doing. As hard as it is for us, it will always be harder for her. She is still smiling and so are we.
We are looking forward to the big birthday party on the 27th. It has been a very full and difficult first year for Cara. We are looking forward to being surrounded by friends and family to celebrate both of our girls.