Friday, January 23, 2009

Neurontin update...

Neurontin has been a roller coaster for us. Sophie slept through the night the first 4 nights in a row. Then she woke up once the following 3 nights. But when she did wake up, it was only for a few minutes. She would just sit straight up in bed, sit there for a minute, and then fall right back to sleep. Ever since then, she will sleep through the night every other night. The nights that she does wake up, she has been up longer. Though, it is still better than before we started Neurontin.

We are only on the lowest dose (3ml right before bedtime). But with every drug there are side effects. Sophie's seizures seem to be worse during the day. They are harder and last longer. So I am very weary about increasing the dosage. Uggg...nothing can ever be simple. Always trade offs. A lot to weigh on my mind. At least, she is not waking up in the middle of the night with her screaming seizures. I shouldn't say "at least". That is huge. So HUGE!!! That broke my heart more than anything. So, I guess I just rationalized it. The trade off is in our favor this time. Now I will just need to rationalize whether it might be worth it to increase Neurontin. For now, we will just give it some time. Maybe add another AED (anti-epileptic drug) during the day to see if it helps her daytime seizures. Maybe Lamictal. Who knows.

Tuesday, January 13, 2009

Sad transition...

Since Sophie turned 3 years old in October, she had to transition out of the Missouri First Steps program and into the Early Childhood Special Eduction program. So we had to say goodbye to all of her therapist. It was a very sad week. She had 5 therapist so we scheduled it to where we only had to say goodbye to one every day the week before she turned 3. We miss them dearly. These people were such an important part of our lives for so long. Sophie started receiving therapy when she was only 9 months old. I know Sophie would not be where she is at today if it wasn't for each and every one of them. There is no way I could ever thank these people enough. They will always hold a special place in my heart. It takes an amazing person to be a therapist to a special needs child. So here they are...

Karen, Physical Therapist

Jen, Behavioral Therapist

Staci, Developmental Therapist

Erin, Speech Therapist

Olivia, Occupational Therapist (not pictured)

Saturday, January 10, 2009

Sweet dreams...

We started Sophie on Neurontin two nights ago. Even though Neurontin is a seizure medication, we are using it for a sleeping aid. Melatonin did nothing for her...probably because her issue was never falling asleep but staying asleep. She has slept through the night on both nights. Though, she immediately threw up after taking last night's dose. We finally found a medication that Sophie cannot tolerate. It is liquid form and I guess it taste terrible even though it is suppose to have a strawberry flavor. I cannot bring myself to taste it but if Sophie thinks it is bad then it is HORRIBLE. Maybe if we mix it in with some yummy drink, she will tolerate it better. Time to start experimenting.

Thursday, January 01, 2009

Where have I been???

Tired. Exhausted. Overwhelmed. Nauseous. PREGNANT!!! Yes. Pregnant!

I am 13 weeks pregnant and just starting to feel better.

I have so much to catch up on. Lots of pictures to download.

Sophie remains off all seizure medications. Her seizures remain relatively stable with one cluster in the middle of the night, a big cluster when she wakes up in the morning, a smaller cluster after her nap, and sporadic seizures throughout the day. She steadily continues to develop...picking up words here and there. She loves the word "doh" (door). She says it all day long. Mostly because she wants me to open the door to either play outside or downstairs.

Sophie turned 3 in October and started preschool at our local elementary school. She is in an integrated classroom where she receives all her therapy. She goes 3 hours every morning Monday through Thursday.

We had a nice long vacation (17 days) visiting my sister and her family in San Diego.

Elsa is doing absolutely incredible. She is signing, talking, walking (trying to run), and climbing. She amazes me at the speed she learns things. She loves to follow Sophie around everywhere and tries to imitate the things she does. The cutest thing is when Sophie grabs Elsa's hands and makes her do sign language (usually the sign for "more"). They are starting to play really well together.

Haley is doing very well in school with one semester of 6th grade over with. She keeps busy with her extra-curricular activities...competitive dance and honor choir. Two things I always wished I could do but never could. I have proved that time and time again in playing Dance Dance Revolution and American Idol on the is quite embarrassing.

We had a wonderful holiday season and feel blessed with being able to spend it with all our family coming into town from all over the place. Happy belated holiday to all of you!!!