Cerebral Palsy Clinic + Orthotics + OT + PT = {Natalee Update}

We traveled to the cerebral palsy clinic in St. Louis in mid-January to meet with the multi-disciplinary team there and move forward with a plan for Natalee, following her diagnosis in November.  While we truly love the Iowa City Children's hospital and much prefer the ease of the drive to it (and our plan was to keep all the children's care up there), in this case they do not have a cerebral palsy team to help us move forward with a solid action plan, and so, it was back to trusty St. Louis we went.  There are stark physical differences in a hospital that has been open just a year and one that has been around a loooong time, but outside appearances didn't matter to us as much as a worthwhile visit.

1-10-19 STL Children's

Worthwhile it was.  After a thorough evaluation by the occupational therapist, physical therapist, and neurology NP, we left with a solid plan of action, things to be watchful of, pain management plan, and lots of notes and scripts.  We were very thankful we went and grateful that she didn't have to wait on the new patient list, even though she hadn't been seen by the team for 8 years.

Dr. Race agreed, that although slight, Natalee's diagnosis of cerebral palsy is a legit cause for concern when it comes to day to day functioning.  She further broke down her diagnosis to right hemiparesis with dystonia.  We appreciated how much time each member of the team took with Natalee, and with us, answering questions, explaining things, and making sure we are comfortable with the plan.

Our biggest concern was pain, and after watching her walk, jump, run, and examining Natalee's foot, they saw how her extremely high arches and rolling in could be causing that pain.  For that we received a script for custom shoe inserts and our local orthitist got us in straight away, scanned her foot, got the inserts made, and she is on day 4 with them already!  

Waiting for our consult with the orthitist. 1-14-19

Anything new can be uncomfortable, even if it's purpose is to help, so she is wearing her shoes indoors with the inserts a couples hours a day to build up tolerability to them.  The OT and PT both agreed that Natalee would benefit from both educational and out patient OT and PT.  I've been working with our local school district and we are just waiting for the final paperwork of a service plan to be finished up and put into action to receive the educational OT and PT.  We went last week, back to our beloved therapists in Memphis for OT and PT evaluations, and right now have a plan of coming monthly, with the therapists prescribing stretches, exercises, and activities for us to carry out at home.

The OT at the CP clinic stressed to me that she feels like Natalee mainly uses her right hand as a helper hand, so we have to have more sensory activities to wake it up and make it want to come into play to be used.  I wanted to kind of stomp my foot and say, "NO! I already did that.  I did that for years and it's messy and takes pre-planning, and it's messy."  Instead, I said, "yes ma'm, and I drug the water table in and cleaned it up and filled it with water beads.  We had a lovely time playing in them this week, but I realized I have to figure out how to basically take her left hand out of play, otherwise her right hand isn't getting as much action as it should.  The OT in Memphis has had some classes and training in visual tracking and thinks that exercises along those lines would help Natalee a lot, and I agree, so we are starting some basic things to work those eye muscles.  I think we have a lot of broken communication when it comes to the right and left sides of her brain and body working together - someday I hope they harmonize beautifully.

Truthfully, January has been a bit of an exhausting month, but I'm glad to finally have a plan.  I told Jen, the OT, that I'm a decent implementer but I'm fresh out of ideas of how to help Natalee on my own.  I'm grateful to be surrounded by a team again, and though I know it will get weary getting to this and that appointment each week, progress will feel so much better than standing still or sliding backwards.  

The day of Natalee's appt in STL, we did a shuffle with the other 3 kids....they spent the night before at Mike's folks', Sara took them to Chelsie's for the day, and then my mom picked them up and took them to their house for the evening until we got back.  We're grateful for our helpers who loved on and spoiled our little tribe in our absence. 

This has been a lot of hard - arranging care, dragging kids to appointments, asking for favors and help when that's not my best quality, but we're managing and keeping our chins up as best we can.

Pictures from our STL day...

I taught her how to recline her seat and she made herself quite a nest for the trip.

My cousin, Brooke, was coming into the hospital for a procedure for her daughter, Scarlette, as we were finishing up, so we hung around to get about 30 minutes of face time and a squeeze from this dolly, who really just wanted to tell me (in typical 2 year old fashion) to put her down and let her crawl around on the hospital floor.

On the way home, we all agreed that our long day had earned us ice cream, and so, we treated ourselves.  We were right - we had earned it.