On August 11th Jana had her first apt at the Down’s Syndrome Center located at the San Diego Rady Children’s Hospital. This center was established by the DS Action Organization. The center’s purpose is to connect families with specialized medical care and create a team to oversee the growth and development of Down’s children.
We arrived at the Center at 8:30 am and took a seat. The clinic works on a first come first serve schedule so the earlier you arrive the better! We weren’t sure what to expect but we were pretty excited. As we were waiting, families started arriving. Soon the waiting area filled with toddlers running around, singing songs and just being happy kids. Not aware to anyone that just because they had Down’s it meant they were different. I was almost in tears as I was watching these kids. In a few years that would be my Jana. Happy and without a care in the world. Going to the doctor like nothing because shes would have already been there countless times. It didn’t make me sad for her. Seeing these kids run and play just made us picture her. Yes she has Down’s, and yes she will struggle. But she will play, grow and develop to be a beautiful little girl. Her path will be slightly different, but seeing these other kids, helped me see she will get where she needs 🙂
Anyway, I got off track!
The Clinic! We started off by meeting with a social worker to make sure we understood the process and be aware of any services Jana might qualify for. She let us know that we would be moving from room to room to meet with different specialist who would over see Jana’s growth. It will be something we will do in another 6 months and then at least once a year till she is 5. We saw a Developmental Behavioral Pediatrician, an Occupational Therapist, a Physical Therapist, a Dentist and a Genetic Counselor. We were also suppose to see a Speech Therapist but she had a family emergency. We figured that was OK since Jana was well 2 months old at the time 🙂 We were so impressed by the team. These people were each specialist in their field who will later meet up all together and discuss each case and create a plan. If we were to try to meet with all of them on our own it would be close to impossible. We were there for a total of 4 hours but it didn’t feel like we were just waiting and waiting. It was actually fun 🙂
Time to brag a little 🙂 Each specialist was pleasantly surprise and impressed by Jana’s awareness and strength. See, a large amount of Down’s babies have what they call “noodle syndrome” where basically they have very low muscle tone which affects their moment and coordination. Some also have a difficult time focusing on the person in front of them, eating a bottle or simply crying to show their discomfort. Jana thankfully has not shown any signs of these development issues. She loves to hold her head up and look around, she enjoys tummy time and is determined to learn to craw soon! She looks each person right in the eye and tries to figure out what exactly what is going on. She notifies us (often VERY loudly) when its time to eat and she doesn’t have any issues so far taking her bottle. We don’t know when or if we will see the development delay caused by Down’s. But we do know right now we have a VERY healthy, strong and stubborn little girl who will not allow you to tell her she can’t do something!
If you know of anyone with a Down’s child in the Southern CA area, here is a link to the clinic for more info. Down Syndrome Center