2 Weeks Down & Some Visitors!

My Mom got here yesterday!  She jumped right in and started helping and playing with Lily.  It was so nice to have a little break!  Then also Caitlin drove down from Penn to hang for half the day.  So we were all together chatting and taking care of Lily.  They have Bingo at the hospital every Wednesday for all the kids, so it was fun to play that.  Lily loved it, and she won a cute toy.

She has had some really good improvement over the last couple days.  The docs have been checking in continually to see the progress and they are very happy. They are wanting to just keep that going a little longer, and then we are looking at getting out of bed, sitting in a wheel chair, and then eventually walking again.  She will have to take the walking thing very carefully.  She hasn't walked in 2 weeks and has lost lots of muscle, so she'll have a tough time at first.

Lily has been such a trooper with being in bed so long.  She hasn't really complained too much.  The hardest things for her, and me, are still the dressing changes and meds.  She gets so worked up about taking stickers off.  She says that she is ok just wearing them for the rest of her life, LOL!  But yesterday we had to change her PICC dressing, which is a big sticker with a lot of little stickers holding the IVs in place.  Plus they have to clean it with stuff that stings and hurts.  We had to prepare her all morning, and she still threw a giant fit when the lady came in.  After she realized that there was no way to get out of it, I held her hands and we breathed through it.  She did great!  A few tears, but she was so brave.  I was really proud of her and we all took a deep breath when it was over!  It's moments like that that just hurt my heart, because I know she's just over this.  She's had weeks of being tough, and she's getting sick of it.  I don't blame her one bit!!!  When she gets mad and frustrated I have to continually remind myself that she is dealing with so much, and to not lose my cool.  What kind of example would I be if I threw my hands up in the air and gave up trying.  We are in this together!

So this weekend will be so great to move forward while also having my mom here.  We are looking forward to just being together and relaxing.  And today marks the start of week 3, so time is going by slowly but surely!