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

Thursday, January 21, 2016

Trying to get back to "normal"

Hello, it's been a while since I last wrote a post but here I am. I left off when Sophia was finally able to go back to school after a few weeks of being drowsy from all the new seizure medications. She was back to the routine and I was ready to deal with the sadness and stress those weeks left on my shoulders and we were going to go back to our "normal,"  Well, we haven't gotten there yet.
Sophia had a couple of good days at school and still needing naps at home and sleeping all night. The medications seemed to be working fine, she was still sleepy at times but nothing we couldn't handle. Then she started with this very dry cough waking her up at night wheezing, we gave her nebulizer treatments but then she had low fevers so the doctor gave her antibiotics. When she finally was getting better and trying to get back to the routine, she got a bad ear infection and since we just had finished a round of antibiotics,  had to start a stronger kind which caused diarrhea. My poor baby had a nasty diaper rash and as if that was not enough, she also got a yeast infection. It was painful for me to see her like that, I can't imagine how painful and uncomfortable it was for her to have it. That took several weeks to clear up but it finally did. Sophia was being more awake, not taking as many naps and everything seemed to start getting better.
No such luck.
For the last two weeks Sophia has been waking up very early. I try to get her back to sleep, sometimes she does and many others she doesn't. When she does go back to sleep next to me or when she takes a nap in the afternoon, I noticed Sophia having short seizures. Seizures! Again!
I understand my daughter has epilepsy and always will. I know that. I know she will always needs medication to control it and I am ok with that. What I am not ok with, is the fact that we don't seem to find the medication that would control it longer than just a few weeks. I am also not ok with adding more medications and dealing with the side effects. I am not ok with having EEGs and seeing my little girl go through the pain and discomfort of putting on and taking off of the leads. But, I have to be ok with all of it. I need to keep until we find the right medication and the right dosage that will control the seizures for a significant amount of time. I want to get excited that Sophia wants to walk everywhere using her walker or holding our hands, I want to enjoy the fact that she is interested in getting potty trained and has succeeded a handful of times. I want to go back to our "normal" and I want it for a period of time longer than a week. Is that too much to ask?
So here we are, already increasing the dosage of one of the three medications we started in November and waiting to be schedule for an ambulatory EEG to see how Sophia is doing at night. And here I am, trying to stay positive and trying to not let this condition get the best of Sophia, of me, of us.