This girl!

This girl!

Thursday, January 28, 2016

On a brighter note...

I needed to write this type of post for a long time, one in which I talk about the wonderful things Sophia is doing and the progress she is making. The last few weeks have been clouded by the seizures episodes and the ESES (electrical status epilepticus in sleep) which haven't stopped but we are working along with the neurologist until we find the magical combination of medicines that will keep the under control for a significant period of time.
Last year I talked about Sophia's communication system the PODD, (you can read about it here). It's a very robust system and Sophia is making good progress with it. She understands that the PODD is part of her and accepts it in her personal space. She started to notice that if she wants something she can get it by asking for help with the book. Sophia has tapped on the picture of the item she wants a handful of times, has said yes or no by putting her hand on the symbol more than a few times. It's a very long process but there is progress, although slow it has been steady.  Sophia is a smart and stubborn little girl, all her life we have been giving her what she wants and anticipated her needs. She hasn't had to work for them until now, we know what she wants but we are showing her how to use to book to ask for it. I am very fortunate to have a great teacher who works so hard to make sure Sophia has everything she needs to succeed in communicating her wants and needs. And she will succeed, I believe she will.
Another exciting and certainly unexpected area of progress is Sophia's potty training. I have to confess I thought we were going to be changing diapers for the rest of Sophia's life. I thought potty training was something way too complicated for Sophia to understand. Well, did I under estimate my daughter! We started this process about 3 weeks ago along with Sophia's teacher and it has been amazing! She definitely understands the purpose of sitting on the potty and is so proud of herself when she goes. Sophia is staying dry all night long and for long periods of time during the day so the wet diapers are less. Her teacher is amazing and has helped me so much with this process giving me tips, recording data to find a pattern of Sophia's trips to the bathroom and keeping excellent communication between us so we are in the same page always.
Potty training Sophia has given me a new look at Sophia's future. Sophia has been our baby for seven years, literally. The fact that eventually she could use the bathroom has given me hope. I was so worried about going out to a public restroom when Sophia was too tall and too heavy to be on a changing table  (technically, she already is). Now, seeing her so motivated, I can see her being more independent and confident using the big girl bathroom and leaving behind the baby diapers. It's funny how excited I was buying flushable wipes and emptying the potty seats and cleaning them, it made me feel a little like a typical mom. I felt like we are slowly making the transition from having a baby to having a toddler. It made me see once more that my daughter is going at her own pace and I can't and shouldn't rush her. She'll get there, when she is ready she will.
Baby Sophia

Big girl Sophia


  1. So glad to see so much good news!!that's so wonderful especially the potty training and staying dry through the night!!my perfectly healthy 5 year old son still wets his pullup every night!

  2. Sofie es realmente una princesita guerrera que va a su ritmo, pero que cada vez va avanzando en cada cosa y logrando poco a poco su independencia, es sin duda alguna gracias al interés y la dedicación tanto tuya como de los buenos profesores que ha tenido, de igual forma por el constante amor de su padre y de las personas cercanas a ella.

    Me alegra saber que poco a poco se bajan ciertas cargas y ves como tu pequeña bebe se convierte en una niña grande.

    Un abrazo para las dos guerreritas más hermosas

  3. She seems like a brave young lady, who has come a long way. All the best to you both!