Today was our dreaded Day 3.  This is the day many children (and parents) have a hard time as it is the first day their child leaves their bed.  The epidural is removed, sensations are felt and pain and anxiety are high (but managed).

Our Day 3 started early with Evie’s catheter being removed and a suppository.  The Neuro team expressed how important it is for a bowel movement to happen as if it doesn’t there would be additional pressure on her incision.  We also gave her more laxatives in her juice too as our goal was for her to have a bowel movement before physio.  A member of the pain management team also popped in to check on her at this time.  She reminded us of the various pain meds Ev can take once her epidural is out etc.

Next a member of Dr. Park’s team came in to remove the epidural.  Evelyn wasn’t thrilled to be put on her side but we think the Oxy took the edge off a bit.  The doctor removed some tape and the epidural which was located to the right of her spine.  I assumed it would have been in the middle but after surgery they bring the epidural line over to the side to help with preventing infection.  They just pass it under the skin.  He said it makes it harder for bacteria to reach the incision if contact happens. Once he left Ev and I had a short nap (I barely slept and Ev was awake at 4:00am).  At this time she began to have little spasms which she would wince at but not like before.

At 8:30am our first PT Jaclyn came.  She informed us of a few guidelines to follow over the next 6 weeks – do not bring her knees past 90 degrees, she could sit up at a higher angle, roll her shoulder and hip together, keep back straight and if she wants to do something on her own, no big deal. We are just trying to prevent pain but Evelyn was free to move how she wanted.

The goal for this session was to transfer her from bed to stroller and back. Brian did a great job! He moved Ev in the perfect seated position all while she was yelling and crying in his face.  She was not having it!

Once calm she did seem to relax for a bit while sitting. She did this for about 15 minutes.  Once back in bed she rested again.

After lunch was session two.  With the timing of her medication and a bathroom situation (more on this later) plus her resistance to being moved caused us to be a few minutes late to therapy. Once there we went to their therapy area which is huge (even though half is under renovation) and it is very inviting! Evelyn had her session on a raised padded table top thing.  At first she was very reluctant but she became distracted by some neat princesses.  We went over basic stretches for her and then it was time to get Ev moving.

First she was placed on her side and then stomach. She had a hard time relaxing her hips down.   Next we encouraged her to get into crawl position, then high knees and finally a few crawling moves. Overall the session was a huge success and though she whined a little bit, she was so happy to be moving and out and about.

The goal was definitely to get her moving and more comfortable in her skin as she learns to navigate her new body. She did amazing for her first day of therapy!  I’m excited to see how she does tomorrow!!

Now we did have a storm today…a Sh!t Storm (excuse my language).  Poor Evelyn had five loose bowel movements. These were gross and very hard to clean up when you can’t move her body in a certain way. We have put Ev in pull ups for now as we are not comfortable to transfer to the potty.  She isn’t a fan as she has been toilet trained for a long time, so this has been an adjustment.

Overall today was better than expected. She is starting to feel like herself again and this is evident by using her manners, being silly (or it is the drugs still?) and not feeling as scared about nurses etc. She also got several tubes and cords removed.  Emotionally it was hard to see her in pain and scared about every movement we had to do but we also know that she will get stronger every minute now.

Another observation is that she is moving her ankles and feet a lot more (still the right more than left). Ev even explained after we commented on how well she is moving her feet, that Dr. Park didn’t need to fix her tricky legs because she already did it. We said it would be a joint effort!

So our Day 3 wasn’t totally horrible (at least it didn’t seem super dreadful but then again we are very tired and our days are blending together). There were lots of ups and downs but seeing her do so well at therapy only 3 days post-op was amazing!  Way to go Evie!