Day 10: PT and R&R

We are still struggling with morning nausea.  I am not sure if it is simply that she's exerting SO much energy just to get out of bed, go to the bathroom and get in her chair before eating a good breakfast or if it is anxiety related or if something else is going on.  Yesterday, Ava decided she didn't want to take the oxy anymore - so the only dose she had was a half-dose right before going to bed so that she could rest comfortably.  But today and tonight, she hasn't had any - only Tylenol every 4 hours.  I don't really want to wake her in the middle of the night for it, but I might.  We'll see.

So, this morning, we thought we'd see if laying in bed for a little while, munching on some cheerios would help settle her stomach before getting up and around.  It was my first morning alone with her, so I got showered and was getting ready to take her to PT when she started feeling sick again. I was so frustrated.  What is going on??  Why can't we get this under control?

So, she pretty much threw up the medication that she took - but I wasn't 100% sure of that, so I didn't want to give her another dose of Tylenol.  Off we went to PT not knowing if she had any pain meds in her body at all.  :/  From the Hackerman-Patz house, the Rubin Institute is literally across the street.  But you have to go a bit uphill to get to the cross walk and then yell at about 5 cars that BLOW by on the street, completely ignoring the cross walk sign that clearly states "Maryland LAW - stop for Pedestrians".  It should say, "If you don't stop for a child in a wheelchair and her clearly frazzled mommy who is pushing that child, carrying a walker, a water bottle, and a bag slung over her shoulder, you are a complete asshole."  But it's pretty normal now for me to expect them not to stop.  And then it's uphill again to get to the entrance.  That's *my* PT for the day.  Ha!

First hour PT was fine - she got to 45 degrees bend in her knee, which is not great, but (barely) passes muster.  She really needs to be 60-70 degrees in order to sit without support on her foot/leg (and that will help with steps).  But for a child with little to no pain medication in her, I was happy with those results.  On to pool therapy.  The prep for it today was much better.  Ava took all the outside sponges off without really much fussing.  We have to have everything off and rinse the pinsites before getting in the pool.  She is very anxious about it, just like showering in general and getting them wet and pulling the sponges off...so I expected a bigger fight.  But actually, it wasn't terrible.

She walked to the steps today and Sunni helped her learn how to get up them, sit down, and twist around to get into the pool and then go down the steps into the water.  BIG PROGRESS!!

 Unfortunately, it took us an HOUR to get from the point she got out of the pool to leave the locker room area and head back to the HP House.  I was totally stressed and exhausted....  She did okay in the shower.  I washed her hair and then put soap on the pinsites and rinsed it off.  I wrapped her in towels and we were off to the back room to dry and put sponges back on.  That's when things fell apart.  There was another little girl there (who has fixators on both thighs AND both calves!) and they were doing their pin care and reapplication and we couldn't really navigate around them very well.  I'm not as organized as they are - we've only done this twice now.  There are two blow dryers and only one really has a low/cool setting, so we had to wait on that.  And I really needed to get a few pieces of sponge off the lower leg pin and she was freaking out.  They are still seeping a little and that makes her go completely crazy.  Me trying to pick anything off a pin sets her over the edge.  So it took us a long while just to slowly do all that.  Putting the sponges back on didn't really take long - and she tolerated that pretty well, so I am hopeful for the future.  It has to get easier/faster.  I just can't take an hour of it.  And she was so tired too after 2 hours of PT.  :/

Came back to the room, ate a little something and she passed out and slept for 2 1/2 hours.

Nana & Papa came back over when she woke up and played games with her until dinner.  We ordered Chinese and I thought Ava ate pretty well.  Probably about 50-75% of what she would normally eat, so that was good.  After dinner, she wanted to try to play ping pong. I was very skeptical that she could do it at all.  But boy did she prove me wrong.  She had the BEST time playing ping pong with Nana. I have not heard her giggle that much or laugh and smile so big in...well, probably the entire 10 days we've been here.  It was so awesome!

After that, we played more games in the room until it was time to get ready for bed.  She started complaining that some of the pin sites were 'itchy', which I told her was probably a good sign that they were starting to really heal up - and maybe they'd start to look better soon too. It didn't seem to bother her THAT much, so we used heat and cool packs to help.

We've been waiting for Ryan to get here all day - he was hoping to leave work at noon, but that didn't happen, so he was set to arrive around 9:30pm and she was determined to stay up.  So I got her to the bathroom, in her PJ's, and in bed to do her stretches.  Pretty soon after, she got all teary that she 'Really, Really misses Carter."  She started crying that she wanted to go home.  Or why couldn't Carter come here to visit her.  It was all I could do to keep it together.  I saw Nana get up and walk away, so I don't think she was able to hold in her tears.  I hate seeing her so upset and the 'I want to go homes...I miss Carter and Jo' stuff really hits me in the gut.

When Daddy finally arrived, I thought it would be a quick hug, chat and off to dreamland.  Well, that didn't happen.  She cried to him about missing home and Carter again but we got her extender bar in and she seemed pretty settled.  They all left the room to chat and I sat by her bed to see if I could help her fall asleep.  Well, the itching/spasms only got worse.  I tried to get her to take the Valium, but she absolutely refuses.  ("It tastes like the most horrible stuff I've ever tasted, Mommy!") so I sent Ryan a text to find the nearest drugstore and get some Benadryl.  It took him a while and she just couldn't go to sleep.  She said "This and missing Carter are the worst things" Finally she fell asleep about 11pm.  She's going to be TIRED in the morning for sure.

Not sure how we can make mornings and nights better, but we need to figure something out and fast. All in all, it was a pretty good day.  This evening was fantastic - her napping was great for her and she was happy and did well until bedtime.  I'm a bit worried about leaving tomorrow for 24 hours.  I need to get home, see Carter and do a newborn session on Sunday before driving back up.  But I've really been the one constant here since day 1, so I don't know if I feel super comfortable about leaving.  Hopefully it will go okay....