Yesterday, Tehilla had her follow-up appointment with her physical therapist. While we waited for our appointment, Tehilla scampered around the area, playing with balls, climbing stairs, playing with mirrors and beads. Another physical therapist who was training a student physical therapist, started to observe Tehilla. She asked me how old she was and how long she has been walking for (about 2 weeks). They started to discuss their observations of Tehilla, assuming that we were there because her only problem was delayed development of walking. I told them that if they wanted to observe her, they should be aware that she had 3 heart surgeries and many medical hospitalizations. They asked what her heart defect was and were stunned to hear that she had only half a heart. It was really sweet to see how in awe they were of her general health and development, given her heart defect.
Our therapist came and was thrilled with Tehilla's progress. She is not only walking, but able to handle a drop in floor level (going from a floor mat to the floor), she bends down, crouches nicely and lifts herself on her toes perfectly.
I explained how the other day Tehilla became out of breath from walking with a slight incline. They said that when she is older, there will be more to do to help her learn how to breath in a more effective way.
When she walks, she does a few things with her right foot that probably is because she just started walking. She turns her right foot out, rolls it inwards and even sometimes just drags it. They were not concerned and felt that it would probably work itself out. She is terrified to go down stairs, so we need to practice going down from the couch and beds.
They want to see her again in a month to keep observing her progress and make sure that she corrects her walking with her right foot.
A number of weeks ago, while at my brother-in-law and sister-in-law for Shabbat, I was talking about Tehilla with my sister-in-law. I mentioned that we could never see Tehilla's top teeth, unless we hold Tehilla upside down. My sister-in-law asked us if we had noticed if Tehilla had a lip tie on her upper lip. Later, I turned Tehilla upside down and pushed her upper lip away from her teeth. Sure enough, Tehilla has a lip tie going from her gums to her lip. I've been wondering if it could be related to Tehilla's speech or lack there of.
I mentioned it to our doctor and we have an appointment with an ENT for Sunday. He will probably refer us to a doctor in the hospital and we will have it cut there.
I mentioned this to our physical therapist and showed her Tehilla's lip tie. She has never seen a lip tie on an upper lip and she decided that it couldn't hurt to call in a speech therapist and ask her opinion on if it could effect Tehilla's speech. A speech therapist came in and also had never seen a lip tie in that location. We discussed Tehilla's speech and she said that based on the sounds she has made, it probably doesn't effect her speech, but it could later effect how clearly she pronounces words and agreed that it should be cut.
She was incredibly nice and was amazed to hear Tehilla's heart story. She decided that it couldn't hurt to monitor Tehilla's speech, as well, and make sure that she is progressing. So, she booked us an appointment for immediately after our next physical therapy appointment.
All in all, I love this Child Development clinic. I think they are wonderful and I love their attitude towards Tehilla and their real desire to help Tehilla in any way possible.
The only other thing significant to write is that Tehilla woke up this morning with a small case of croup. She has been given a one time dose of Betnisol. I personally hate this medication from when we used to give it to Tzviel. It makes the kids hyperactive. When Tzviel took it, he used to crawl in circles or run back and forth in our house at 12:00 am yelling "chicken". Let's hope Tehilla doesn't have as strong of a reaction to it.
Looking at your previous posts, Tehilla seems to be a very bright and jolly child, and to think that she could be that active with only half a heart leaves me in awe. Anyway, it’s great that you’re able to attend to all her needs, on top of the continuous therapy and such. Thanks for sharing this post with us. All the best!
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