A Day of Therapy

(Lucy gave baby Jack a huge smile and kept pinching his cheeks.  I think she really misses him.)

It was a day of therapy...for us all.  We had several visitors throughout the day that put smiles on our faces and brought a much needed distraction to our day.  I do have to admit that this morning/early afternoon I was very emotional.  After seeing my baby break down because she's just realized that she would be spending her 5th birthday in the hospital, I was spent. 

For about 3 hours today I had a good pity party for myself and cried...alot.  I am over it.  I am mad.  I want to take my baby and go home.  I want to be with my other children. I want my family whole again.  I want Lucy to play softball, I want my girls to do swim team, I want Lucy back in school.  This sucks!  Cancer sucks.  The whole damn thing sucks.  I want to go to the top of the roof and scream.  Then I want to hit something..someone..whatever..whomever. 

But I can't and here we are.  Nothing left to do but deal with it and move forward.  Several changes in plans today.  Due to the meningitis, looks as if we will be inpatient at LeBonheur for 5-7 more days.  Then we will head to St. Jude inpatient for 2-3 weeks.  More than likely we will be delayed in starting radiation for one week.  I am really, really bummed about it but I trust the doctors and they feel as if this is best for Lucy.  She can't even begin to handle the radiation until she is stronger. 

At one point today, Lucy sat in Erik's lap and slept.  She just gets so tired of sitting in bed, but is hooked up to a heart monitor all the time so she can't really move around a lot.  Erik's lap is always convenient and she feels so safe.  He told me later about this conversation:

Lucy- "Daddy, I want to play with Ella in the play room."
Erik- "Well then we have to listen to the doctors and take our medicine.  The doctors are here to make you better."
Lucy- "But Daddy, I can't play with Ella because I can't walk."

Oh, it just breaks my heart.  I know she will walk again one day (hopefully soon) but it is so hard for her to understand.  When Erik got her out of bed to use the restroom he stood her up and asked her to take a step.  She tried and then stumbled and almost fell.  She got so mad and started crying.  I am hoping that this anger will fuel her physical therapy sessions.

Speaking of therapy, we all participated in a little therapy today.  Erik went home last night and spent some time with his parents and Ella and Jack.  He was able to bathe them both, put Jack to bed and sleep with Ella.  I think it was uplifting for all involved.  They were all back at the hospital around noon and I spent the afternoon loving on my baby boy.  I have seen Ella throughout the week several times and she won't sit long enough for me to smooch on.  Ella had Grace E. to play with all afternoon so that made her happy.  The highlight of the night was when Lucy's best friend Hyatt came to visit.  Then I did a little Target shopping and Pei Wei eating with my friend Amanda. 

Oh My Goodness!  She was so happy I think she could have floated off of the bed.  When he walked into the room they locked eyes and smiled, then laughed and then smiled some more.  He sat by her in bed and held her hand while they watched Monsters vs. Aliens.  Then they played their DSi's for a little while.  After about 25 minutes, though, she was spent.  She had to take a nap.  She just has no stamina, but this was the happiest I had seen her since surgery.  I just thrilled my soul. 

Jack played in the little car with 2 of my uncles and had a wonderful time...

Cousin Maddie was the first visitor of the day and made Lucy laugh, although she was very concerned that Maddie was going to mess with the tubing to her iv's.

  

One last glimpse of my baby boy before I go to sleep.

Lucy will more than likely have another Lumbar Puncture tomorrow to help drain the spinal fluid buildup.  While it is not a big surgery, she still has to be put to sleep.  I will keep everyone posted for sure!  Thank you again for your continual prayers.