Cole Turns Four and Reagan Rides in Show #2!

Wow, it has been a busy month.  Our little Ironman turned four on October 6th and we celebrated with his friends and cousins at the Dulles Sportsplex with a soccer party.  He had a great time with Coach Marie learning new soccer moves and playing on the moon bounce.  Cole's favorite toys this year were Optimus Prime (Transformers) and his new planet book from Grandma.  After just a week he has memorized all the planets in order from the sun!

We also went to my parent's to light a lantern for Kendall.  Each year the kids ask more questions about it.  And although they have a lot of fun lighting the lantern and watching it rise to our angel in Heaven, it's always hard to explain the raw emotions that we still feel in our hearts.  For the kids, it's a fun activity because they don't feel the pain and loss that we feel.  So for now we give them lots of hugs and thank God that they are both part of our lives here on Earth.

October was also filled with trips to Great Country Farms with Emma and Luke, Pumpkinville with Reagan's friend Carter and his brother Derek and Cox Farms for Johnny's work picnic.  The kids had a lot of fun on the slides, tractor rides and Reagan especially liked swinging from the rope swing!

Reagan also had her second horse show!  She rode in three classes: walk/halt, walk/trot, and an obstacle course.  She placed 4th, 3rd and 1st!  She was very excited and had a lot of fun especially since she rode in the same classes as her friend Sydney.  We were glad her pony Cupcake was a good boy!  We are convinced we sweetened the deal with the apples we brought him.

September - Neurology, Physiatry, Neuro Psychology

It has been a busy month!  In addition to starting school and getting a new brace it was time to go back to the neurologist, back to the physiatrist and back to the neuro psychologist.

Dr. Lavenstein was happy to see how well Reagan was doing.  He said her medication level is


sufficient for now and we should keep doing what we're doing.  We don't need to go back until March!

We also visited Dr. Morozova, Reagan's physiatrist.  Our big question was about the new SMO.  She agreed that the toe plate was too long so she asked that we go back to Nascott (the orthotist in DC) to have it trimmed back.  She also said we could have the sides shortened since Reagan doesn't really need the ankle support.  Although this is all great news…that means the new shoes we bought will now be too big.  It also means another visit to DC which is tough since Shawn is only there on Wednesdays and it is IMPOSSIBLE to get an appointment on his schedule.  Needless to say, she said she's not ready to eliminate the brace, but with how she looks now we may consider that when we come back to see her in February.  We also talked about constraint therapy.  She said research indicates this methodology is best for children who need to get their brain to realize they have an affected side.  Given Reagan is so high functioning now she thinks we really do need to consider a bi-manual program instead (intense therapy with two hands).  So off we go doing some research…

Reagan's private OT mentioned last week she feels Reagan has increased tone (tightness) in her left hand. So I also asked Dr. Morozova whether she thinks we should consider Botox again.  Although I am not a big fan of Botox (and having to put Reagan under anesthesia) we saw such amazing improvement in her supination that I wanted to see what her opinion is.  I was very happy to hear she doesn't think we should consider it for Reagan at this time.  It isn't uncommon to see increased tone during periods of growth spurts but the goal is to stretch regularly to try to counteract the effects.

Lastly, Cole had his 4 year neuro psych evaluation with Fairfax Neonatal Associates.  Although we had a private evaluation last year, this data is used for longitudinal studies that they do about premature babies born in the NICU. Overall the evaluation went well - it is about 4 hours so he is rather tired by the end.  But we look forward to comparing the results to the evaluation we did last year and seeing the areas where he's making progress.

In addition to keeping up with weekly OT, biweekly PT (for Reagan), doctor appointments and school we have gotten out to play a little.  We've been ATV/dirt biking a few times.  Reagan still loves her bike and riding the ATV with Dad.  The big breakthrough is that Cole is now riding the dirt bike and squealing WHOOO HOOO.  He doesn't have the strength to keep the throttle activated, but he's going slow enough that Dad can walk next to him and hold it.  And of course there's always the obligatory trip on the tractor to get a big smile.