Thursday, December 13, 2012

Appointments and Seizures, oh my!

I'm happy to say Addie had her last (scheduled) doctors appointment of 2012 yesterday. We've seen the eye doc twice, neurologist, neurosurgeon, ent, physical rehab and pediatrician once and the orthotist twice all since October. Whew. Glad to be done for a while.

The pediatrician was thrilled with Miss Addie. She said she's the most amazing (medically) thing she's ever seen. That she is just like a typical 18 mth old. Praise God! I knew she was doing well but hearing that from our pedi was awesome!!

Now if we can just figure out these pesky things called seizures. :( Addie had another seizure on Friday the 7th. Just like the last one. In her sleep, before awakening. I heard her through the baby monitor and asked Jack to go talk to her until I could come get her. He came back and said "mom, somethings wrong with Addie. She's going sniff sniff sniff sniff," I immediately knew what was wrong and ran into her room. Saw her convulsing and went for the diastat pen. I knew based on how she had been discovered that it had already been 3 mins so I immediately picked her up and put her on her changing table. I prepared the pen and administered the gel. Adam was home, thankfully, and he had hung up on his conference call and was standing by her side, talking to her. I left them to go find a cell phone to time how long the diastat took to work. We had instructions from neuro that if it lasted longer than 3 mins to call an ambulance. Thank God it was over almost before I could start the stop watch on the phone. We let her lay on her changing table. She was moaning and moving a lot more than she did the first time. Adam lifted her on the changing pad and carried her into our room. I sat with her on our bed while Adam made breakfast. I called Neuro and left a message with the nurse and then texted pt to cancel, called my mom and sister. All never leaving her side.

Jack was awesome. He told me he had tried to rub her back when he found her but it didn't help. He's such an awesome big brother and has wonderful instincts to come tell me when something is wrong. Now that we know Addie officially has a seizure disorder, I won't be putting Jack in the position of finding her in bed seizing again. So far, that is her pattern.

Addie slept for quite a while but was fighting the meds a lot sooner than she did in Orlando. From what I can tell, she had a lot shorter seizure and because she didn't have to have double doses of meds, it didn't seem to knock her for as big of a loop. She started trying to roll over to her belly a lot sooner, which made me smile. That's when I know she's sleeping more than knocked out.

We are trying our best to process this new development. I really thought her seizure in Disney was a vacation fluke. But it's happened again, at home, in our normal routine, not out in heat and humidity, and I've been making sure she's been getting plenty of sleep. The only thing I can find that connects the two events is the lack of drinking. We put Addie back on the bottle after her seizure in September. And she just weaned herself again last week. Right before her seizure. She just doesn't drink as much out of a sippy or out of a cup as she does from a bottle. I can't help but wonder if this is connected. So time (hopefully) will tell. I pray that she's goes even longer before the next one. We are taking precautions on our end to better hear her in the night and see her to check on her. We have filled more diastat pens to be ready. She has a follow up neuro appt in January to come up with a seizure plan.

She's back to her cute self and we thank God every day that she wakes up smiling. She has several new words - is probably up to 25 now. At her pedi visit yesterday she weighed 31 lbs and was 34 1/2 inches long. Crazy!!! Her head circ is up to 53 cm.

We've been busy with holidays and Christmas shopping! Life goes on. Hopefully my next update will be more fun filled!!


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