Wisdom Heart

We are feeling much better as far as the coughing goes but Sophia still has an ear infection. I took her back to the doc on Monday and he said her right ear had some major blockage and he could not see her ear tube. He made an appointment for her to see an ENT tomorrow to have her ears cleaned out. Hopefully after her ear is cleaned it can drain out the infection (and hopefully he will see the ear tube so we don't have to get it put in again).

The weather here in Kansas City has been much cooler lately. Sophia spent some quality mommy-daughter time at one of our local parks this week. We both had a great time with the other kids and parents. Some of the mother's told me about a play group that meets at our local community center and Sophia and I plan to check it out.

Today Sophia and I went to story time at our local Library. It was so much fun. They had professional story tellers read three books about frogs. Then we sang songs and did a craft project in their art room. Sophia just loved hanging out with the other toddlers.

Tomorrow the gait trainer/walker comes. The company is delivering it to the house and setting it up for Sophia.

Michael will post and add some photos this weekend after we have had a chance to use the gait trainer.

Patty had a sore throat last week and went to see her doctor. It turned out she had strep throat. By this morning, it had turned into a nasty cough even though she had been taking penicillin. And to add to things, Sophia had a really restless night and was getting a runny nose and cough. So both went to the doctor today. Patty has bronchitis and started some stronger antibiotics. Sophia has an ear infection and also got antibiotics. So far, I have dodged the bullet. I hope Sophia and Patty are feeling better soon. I hate to see either one of them suffering.

Please do what ever it is positive that you do (pray, meditate, knock wood, or just send love and good thoughts), and dedicate it to little Cason. He and his family could use your support.

My mother and I took Sophia to a local park today. I wanted to experiment with my camera and try to get some good shots of Sophia. The results were mixed but I did get some good shots. You can see them at flickr.

I have been experimenting with a new blog host called Vox.
I have no plans of changing wisdom heart.
I think vox is still in beta testing. It is really easy to use but it differs quite a bit from blogger.
The idea behind it seems to be a merger of blogging and social networking (ala myspace). It makes it really easy to share photos, music, videos, and books. I don't think it allows comments unless you are a member, which is a drag. I am sure it will be in constant evolution until it is fully open and out of testing. At this point, I haven't figured out how to tweak the code for the site. This makes it a little less versatile than blogger.
If you are interested in trying Vox, I have a few invites I can send to those of you who regularly visit wisdomheart.

Sophia is doing really well self-feeding. She ate her whole dinner tonight unassisted. Go Sophia!
You can see more pics at flickr.

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

Here is a short Jim Hensen tribute video I dug up. I added a bunch more videos and edited the text a little in yesterday's Sesame Street post. Enjoy. I will post a Sophia update soon. She is doing really well since surgery.

Sophia loves Sesame Street. We were watching old Sesame Street clips on YouTube and I was reminded off one of my favorite muppets. His name was "Bip Bipadotta". He was a sort of beatnik character with wild red hair.
I loved Jim Henson for pushing against so many boundaries on television in a way that wasn't about being shocking or offensive. I have posted all the "Bip" videos I could find on YouTube below. I hope they bring a smile to your day.


Rhyming Words.

Mahna Mahna is a classic everyone remembers from the Muppet Show. I couldn't resist. Apparently this song has an interesting history.

And finally the original Sesame Street version, likely from 1969.

Air.

Some Of Us.

Opposites. (sorry for the technical issues, its the only version I could find.)

There is a certain charm to setting up a wading pool on the front porch of a house in an urban neighborhood during the heat of a summer afternoon, I can only describe as transcendent. If you add one beautiful curly-locked bather the whole scene borders on the sublime. Enjoy the new photos at Flickr.

We saw Dr. O'Laughlin today. He is Sophia's cardiologist. It was just a routine follow-up.
Sophia got a great report from her appointment. Her systemic oxygen saturation was around 87. There was not fluid around her heart and Dr. O'Laughlin was pleased overall by her appearance. He also showed us her stents on echo.
We do not have another appointment for three months.
The really good news is, he does not anticipate her needing any more interventions (heart caths, etc.) for a long time.
Basically until Sophia is approaching her VSD repair, there is really no reason to do a cath other than to dilate her stents. In other words, she is going to have to grow a whole lot or be ready for surgery before she has anymore caths.
She shouldn't need the VSD repair for a couple of years (knock wood).
Sophia should get a much needed break from the hospital. Maybe, we will even get to take a vacation next year.
I have added a horribly out of focus picture above of Sophia using her brand new fork to self feed.
Edit: I finally updated my "Heart Kids" links to include all of you who contacted me during surgery.