Wisdom Heart

Hi everybody. It has been a while since I have last posted on the blog, so I thought I would take advantage of Sophia's naptime and update everyone on her therapy sessions. One of the main reasons I choose to be stay at home mamma is so that I can manage and be involved with our daughters on-going weekly therapy sessions. Sophia's therapy program is funded by the state of Missouri. It is called First Steps. It is a totally free for us. It provides therapy/therapists to children who have all sorts of health issues and deals particularly with developmental delays. Through First Steps, therapists come to our home to work with Sophia as often as assessments and evaluations qualify them to do so. Briefly, I am going to attempt to explain the therapies Sophia receives weekly and then I am going to give an update on her progress. I will refer to each of these therapists by their first name.

1. Sophia sees an occupational therapist (Sheri) for one one-hour session per week.
2. Sophia sees a feeding specialist and speech-language pathologist (Suzanne) two one-hour sessions per week.
3. Sophia sees a dietitian (Dana M) once every other week for 30 minutes.
4. Sophia sees two different physical therapists (Dana S) for one half-hour session per week and (Barbara) for two one-hour sessions per week.
5. Sophia sees a Special instructor (Trish) once every other week for one hour.

As you can imagine, it's a major undertaking keeping up with all of these therapies. Sophia's therapists have standing appointments but things always seem to change. Either our daughter has doctor's appointments or a therapist has scheduling conflicts needs to reschedule. Needless to say, planning requires writing down all these appointments on our calendar in the kitchen. She has at a least one therapy session a day with the weekends off.
As the therapists work with Sophia, it is my job to encourage her, wipe her nose and learn how to do what ever it is that the therapist is teaching her to do so that Michael and I can continue this therapy through out the week. At first I was a bit overwhelmed, but now it just is a normal part of our lives. Sophia really likes all of her therapists and enjoys when there are other supporters in the room like friends and family to encourage her. Some of her therapists occasionally schedule a session in the evening so Michael can be more involved.

Occupational therapy is by far Sophia's favorite and it where she does her best. Sophia is not as delayed in her fine motor skills as she is in her gross motor skills. My best guess according to her last assessment is she is about 4 months behind with her fine motor skills. Sheri and Sophia are always working on sensory issues. For example, she dislikes hair washing and teeth brushing. Sheri is always introducing different kinds of play and new textures and shapes. One example is, filling a large bowl of dried lentils and putting small toys inside the bowl and having her "go hunting" for the toys. We are working on sign language with books and objects and eating with a fork. Sheri likes to use crafts as a way to teach Sophia new things. Sophia works on puzzles, and she does sorting and stacking, among a myriad of other fine motor activities.

Physical therapy is just plain hard work for Sophia. She is very delayed in this area. She is unable to stand on her own, and has not started crawling yet. Sophia is performing at or around a nine-month old level. The main goals for PT right now are standing, bearing weight on her feet and legs and putting Sophia in the hands and knees position. She HATES being in the hands and knees position. Having two different therapists has been such a huge benefit for us. Barbara works with Sophia on the standing and Dana mostly works on the hands and knees. Sophia was recently fitted for a piece of medical equipment called a gait trainer that she should be receiving in a couple of months. She has one on loan right now from Barb. It basically stands her up in a walking position and all she has to do is put her feet down and take steps. She likes it.

Sophia has a dietitian come by weekly to monitor her height, weight and head circumference. She also helps me manage her water intake and feeding schedule. Dana is Sophia's Buddy. She looks forward to her playing with her and feeding her. Sophia has done very well in this area there has not been any significant weight and growth issues despite her heart condition. She maintains around the 50th percentile for both height and weight.

Sophia works with Suzanne, the feeding specialist, twice weekly to improve her speech and eating skills. Sophia eats like a champ. She can not drink any liquids by mouth and still gets her fluids and medications through her g-tube(I'm sure you've seen it in her pictures). Sophia's speech is very delayed. I would say she is at or about one-year with her speech development. Suzanne encourages the development of Sophia's speech and language. This therapy helps us teach Sophia the most effective way to use language to express herself.

Lastly, she meets with Trish, the special instructor. She ties all these therapies together and monitors Sophia for cognitive delays. She suggests age appropriate play activities for Sophia. She recommends certain toys and also tells us when Sophia has out-grown toys. It is our opinion and seems to be confirmed by many professionals who have seen her that her developmental delays are not significantly rooted in cognitive problems. Sophia is very smart.

The therapies Sophia receives make a significant difference in our ability to deal with Sophia's development. I would like to thank all of her therapists for their caring and expertise. They are all special people.

I hope everyone has found this update informative. I would be happy to answer any questions or further elaborate, just leave a comment or email us.

Patty