Monday, February 16, 2009

Emily and her new mobile

Last year, during one of the lengthy stays with neurology at CHOP, Emily seemed to watch a mobile that was available to be used during the stay. Aimee wanted us to get it and we searched high and low, but couldn't find one for less than $100. Yeah-$100 for a mobile... Don't get me started.

We eventually stopped looking as this mobile was discontinued and we already had a mobile she seemed to like. That one(from the days of Drew) began sputtering and playing out of tune notes even with new batteries, so I reinitiated a search last week, this time refusing to give up until I found one.

We found one over an hour away for only $20 and had it attached to her crib within ten hours of finding it on craigslist.org. SHE LOVES IT. The following photo shows her smiling and looking at the mobile, a real rarity for her.





Oh Emily! How far you've come...

9 days old, wide eyed in the NICU...


549 days old, wide-eyed in her living room crib...

Emily has been having some ups and downs with her ketogenic diet. We have been keeping quiet about her progress as we don't want to jinx anything, but she has been more alert, has had significantly less seizures, and seems pretty happy most of the time. She has, however; battled a "GI Bug", and recently has had incredible reflux that is causing daily vomiting plus she's having a tough time with an antibiotic we're using to treat a UTI.
I have been making her formula daily, but Aimee handles the meds. What a real job that is! You practically need to put on a white coat to keep track of all the mixing and filling and administering. Honestly, it took me the better part of an hour the first time I made meds for her. Because her diet is highly controlled, even the itty bit of sugar carbs in a liquid medicine could take her body out of ketosis. So it is cut, crush, mix and fill for most of her medicines.
Say a prayer for Aimee every day at 8am EST. At that time, she is getting Drew on the bus, giving Carter and Brenna breakfast, and playing pharmacist at our kitchen counter. And I thought my first period math class was exhausting!
Here is short video of Emily enjoying her mobile.

5 comments:

Mrs. Dwiggins said...

She is such a sweetie! Thank you for your updates our family is and continues to pray for little Emily!

God Bless

KRISTA said...

Sweet Emily. So wonderful to see her smile! Isn't Craigslist the best? You guys are wonderful people. The world needs more parents like you!

Anonymous said...

Keep up the good work, Emily!!! We love you so much!!! xoxoxo

MeMe and PePe

Andrea said...

What a sweetie pie she is! such a precious smile! Always praying for Emily! Hugs!!

Shanna Grimes said...

What a sweetie! Emily is just one of those special little girls. She is just too precious for words. We will continue our prayers for her. We are so happy to hear about the reduction in seizures. Keep up the good work, all of you!

We definitely feel you on the meds too. Felt like my life was planned around one dose to the next... and you have the keto on top of it too, sheesh! You are ready for your state board med exams by now, I'm sure ;) Hang in there!