One more challenge handled with dignity

So, our girl continues to rise above hurdles. She was admitted to the EMU (Epilepsy Monitoring Unit) this week to see if we could get a handle on her seizures and see if the meds are working or not. She had 25 wire leads attached to her head, which were attached to a chord which plugged into the wall....for three days. Imagine being a toddler and being so confined. She was amazing of course. Every doctor and nurse who came into the room was greeted with a "hi!", high five, and a "Bye!" as they left the room. It was very hard for her to be so restrained, but she really managed it well. it was also very difficult (for both of us!) to sleep in bright lights (so that she could be seen throughout the night). We were videotaped the entire time. Luckily we had some great visitors!!!! Uncle Jason and Namon get kudos for coming multiple times to visit, and friends Jack, and Daniel and Kayla were wonderful surprises for Sharon to brighten up her time there!!
The EEGS will be reviewed and we won't get a final report for many weeks, but overall things are looking good. She seems to be doing well under the medication she is on now so that is a relief! This will be an ongoing journey throughout her life and we'll just do our part to try to stay on top of what she needs.
Yesterday when they "let her go" from all the wires she was just beaming and so happy! She walked around and was just so happy. And she and I slept like ROCKS in our home last night :)

pool girl

So we've now started private swimming lessons. As you may know, Sharon has been taking group swim lessons since she was a baby and has loved them. I had hoped she would be able to move out of the baby group but the next level up is for 2-4 year olds and requires that the kids be able to get in and out of the pool by themselves and sit by themselves during the lesson. Since that isn't an option for Sharon, i've enrolled her in private sessions. It's the same instructor we've always had and we really like him and he has a huge soft spot for Sharon. She had her first private last week and just beamed the entire time. I can't wait to see how she does over the next weeks...it's so nice to see her thoroughly enjoying herself during the session!
We'll be doing some intensive seizure monitoring later this week at the hospital and i'll give you updates on that later...

Hooray!!!

Well, we sure had a fun Superbowl Sunday :) This little Baer family is proud to be part of Steeler Nation (I held out on RJ for the first few years, but i've decided that it's much more fun to have this team to root for as a family and i was right!!!)
We also celebrated Uncle Jason's birthday in the midst of football (Sharon helped blow out the candles...she's finally getting that birthday cakes and candles can be fun!). It was a gorgeous day and we spent it just about entirely outside. So nice! now we'll batten down the hatches for the next few weeks that are sure to bring the worst of our winter. Sharon does not handle cold well, she seems unable to regulate her body temperature for extremes (cold or hot) so we'll be staying in until it warms up again. We're still figuring out the seizures. Don't have them under control yet and will have more testing sometime soon. Of course we'll keep you posted!
Hope you all are enjoying the start of February, and HAPPY BIRTHDAY UNCLE DEESSA (sharon's variation)