Sleeeeeeep!

Today I'm exhausted. Her pump needed to be filled at 6am and I never fell back to sleep. I have been super sleepy all day but I tried to take a nap twice today and could never fall asleep. Now it is almost 10pm and I'm still awake. That might have something to do with this over exhausted feeling.

There is a slight possibility that my not falling back to sleep this morning nigh have something to do with Jillian (imagine that). While i was filling her pump at 6 she threw herself backwards. She does this when she refluxes. One if these days she is going to touch her head to her toes while refluxing with how she throws herself to try to deal with it. Her throwing herself is not uncommon. Normally it is once or twice in a row. This morning she did one throw back, then two, and then she got into this rhythmic pattern of throwing herself back that slightly resembled a seizure. It stopped after about 6+ throw backs. I knew it was reflux induced but it was still not fun to watch. It is kinda hard to sleep after that. 

I spent a little time reading into sandifords syndrome. It is classified by reflux symptoms that look like seizures. Neurology said that they think her seized like activity it not actual seizers but a reflux symptom. So even though no dr has officially said sandifords syndrome they have discribed it. Sandifords however is only the description of seizure like motions due to reflux. It cannot occur without bad reflux to begin with. It only affects something around 1% of kids with reflux. Once the reflux is under control sandifords goes away. Until such time it can be scary to watch. He reflux just can't seamed to be controlled enough to get rid of the sandifords right now. She is on the max dose of her acid reflux med (which helps a lot ). We could tell the difference when we upped her meds last. It made a difference for the better. We will see. She defiantly has less stairing spells but she also has never gone back rhythmically before... At least not that I have seen. Man sometimes sleeping is just so hard when you think about all the things that could go wrong in that time. I just have to put her in God's hands when I put her to bed every night, just some nights are harder then others. Filling the pump at 2am every night gives us a chance to check on her too. The plus side of getting up in the middle of every night. 

Jillian however has gotten good sleep today. She slept til 8:30am. Then she took over an hr long nap around noon and then took a long nap in the car. She was asleep by 8pm too. Either she is growing, getting sick or something. I guess time will tell us which one. 

Today we spent time as our little family. We went to target and Starbucks and then to big foot beach state park and Brent pushed Jillian on the swings. It was too cute! We then took a drive all the way around lake Geneva. Then we stopped at Walmart. We came home and Brent made me dinner. It was a nice day :) 

Well I'm going to try to go to bed...