And we're home!

One of my favorite pictures of our time there.
She was cheery even after 44 hours of monitoring.

It feels so good to be back in our home! Lilly is so happy to be in her own bed with no wires attached to her tonight.  I bet she will sleep well tonight.  I hope she does so that I do too!

Today was actually more difficult than I had anticipated, and maybe that is just as well.  I had planned on trying to comb out the glue at home, but because Lilly was having the MRI they wanted as much out as possible beforehand.  I caught Vinnie right before he left the house so he was able to bring me conditioner.  I used 2 1/2 bottles and I did not even get it all out.  I just hope that Lilly never gets lice because I would imagine combing all that glue out would be kind of like combing nits out.  But I digressed.

Then we had to take her down for the sedated MRI.  She was enjoying the ride down in the special crib.  :)  This time I didn't have to hold her down, they just took her from us into the MRI room.  In less time then they had allowed, she was finished.  She was hysterically crying and trying to rip her IV out in recovery so they let us go up to her room.  She was the last patient so we had 2 nurses to ourselves!  All the nurses we had were great.  Lilly managed to charm each and every one.

Keeping busy while we waited for the conditioner.  

Eventually we got her to eat some crackers and drink some water and from there she ate lunch and we were able to leave.  She seemed to perk right up once we were on our way home and really perked up once got home.  She was still a bit wobbly for most of the day so I put some movies on, made popcorn and hot chocolate and we relaxed.

Thank you to all those who have sent me messages, texts, written comments and called.  It means so much to all of us to know that all these prayers and positive thoughts are out there in the universe for our Lilly Bernadette.

More than half way there

Phew...last night and this morning were challenging.  Lilly stayed up until 1am.  Midnight was the goal but we were in the middle of Beauty and the Beast, no matter that we have seen in hundreds of times before, we had to finish it.  The wake up call came at 6am.  yikes.  Several leads came loose in the night so we had to go back to the room to get them reattached.  She was not as angelic as Wednesday but still pretty darn good.

You can see how some leads and the "hat" came off.

I had to cut her a lot of slack today, but honestly, I was amazed at how well behaved she was.  I was going to have a grandma or two come for a visit, but she had such a difficult time when Vinnie had to leave that I decided against it.  Even after dinner she said to me, "I keep calling for my Daddy but he's not coming.  I miss him so much."

Still smiling at dinner time!  

After some testing that involved flashing lights and blowing a pinwheel, she was able to nap.  We both napped.  For 3 hours.  It was glorious!  The playroom was open today so we went in there a lot.  We met the family across the hall and wished we had met them last night!  Their little girl is 10 years old and was so sweet playing with Lilly.  They have been through this a few times, though not since she was 3 years old.  Before they went to bed they actually colored together in the hallway and had sticker fun!  Plus the mom has been there done that and was gracious about sharing her experiences with me.  She uses the same doctor and had wonderful things to say about him.

Lilly loved putting her Piglet in the baby equipment.  :)

I think the long nap may have backfired a bit in that she stayed up way past her bedtime again.  Hopefully we can sleep later then 6am.  Tomorrow she gets to have all the leads and her special hat removed and then she has a sedated MRI scheduled for 11am.  I think by then we will both be anxious to get back to our home and routines.

Thank you for all your comments, texts and emails.  It has really boosted my spirits while I am here!

48 hour video EEG testing

We are in the pediatric neurology center!  I am so grateful to our doctor who advocated to the insurance company for Lilly.  We saw him this morning and he is very glad that Lilly is here so we can get some answers.  Lilly has been amazing so far, especially through the node application, which takes the better part of an hour.  See, she was even smiley right after!   

One of the hardest parts is that we found out about 7pm that Lilly has to stay up until after midnight.  They want her to have half the sleep she normally has.  The poor kid has been asking me to go to sleep.  Several times she has also said that she was ready to go home.  But overall she is in great spirits.  She has taken the cue from Vinnie and I about how much fin this adventure will be.  We are having treats and watching movies, coloring and playing with play-doh.  And this too will pass.  At least she was able to take a nap this afternoon!

Thank you for all the positive thoughts and prayers sent our way!!