Quick updates ~ GI, Cole's Birthday, Pediatrician & Back to the Orthotist

Just a couple quick updates since I have so many this week.  We met with Dr. Honeybaum the GI last Friday to follow up on Cole's constipation issues and she is still not happy with his output.  We have increased his Mirilax to 1.5 caps per day and if he goes one day without a stool then we will double the dose.  Hopefully the increase will work - last thing I want is for him to have trouble making it to the bathroom, espeically at school.  She also wants us considering a cleanse every other month.  YIKES!  Remember that line-up of cups from the hotel?  Yup.  Luckily we won't go back to the GI a few months as long as everything continues moving along.

In addition to doctor's appointments we reached the big 5 year milestone for the twin's birthday.  Although it's always a bittersweet time of year, we had a very nice celebration for Cole's birthday over the weekend and had my parent's over to celebrate on Sunday (Johnny's parents are out of town).  He had a lot of fun with his friends and cousins at the fire station where Johnny and I volunteer.  We had pizza and cake - his two favorite foods!  We also had rescue obstacles setup and the kids got to play on the real fire trucks.

We have been talking about a fire house birthday for years, so it was fun to finally host it.  Cole chose a Heatwave Rescue Bot Transformer theme and they had a lot of fun acting out the rescues with their pretend fire trucks including a parachute rescue!  One thing I recognized early is that the years of hosting birthday parties is actually very short, so we are enjoying it while it lasts!

In addition to having a birthday, Cole also had his 5 year check-up.  Luckily there were no shots because I let him get him get the flu mist instead of the shot this year.  He was very excited about that!  Overall his appointment went well.  He has grown over 3" this year!  He is finally at the 25th percentile
and we are very happy to see an increase in his growth rate above where he has been since birth.  Hopefully this trend will continue!  And hopefully no more pediatrician until his 6 year check up!

It really is amazing when you look at how far he has come!  I am so proud of how hard he has worked to get where he is today.  He will always live with the affects of prematurity, but he doesn't know life any other way.  I can't wait to see where the next 5 years takes him!  So proud of him.  And I know his special angel in Heaven is dancing on her birthday and celebrating with all the amazing people there.  It is difficult wondering what she would be like, and how different our family would be, but one day we will be reunited again.  Until then, we will focus on our successes, take life one day at a time, and look forward to the years head.

We also had an appointment yesterday at Nascott Orthotics and Prosthetics.  Unfortunately with Reagan's increased tightness in her left leg we've decided to have her fitted for a new orthotic.  The good news is that we're going to try using it only at home and see if we can see some improvement in her gait and decrease in the falls.  If so, we hope to only have this night brace.  If we don't see improvement then we may need to put her back in something during the day.  As you may remember, the day brace they are recommending for daytime is a hinged solution so it's VERY large and finding shoes will be very challenging because the shoe has to be wide and go up in size to accommodate the width of the hinge.  Because she only wears it on one foot she only increases one shoe.  Any more than one size increase and the shoes look vastly different and it looks funny.  

Reagan was a really good sport about the casting although I'm not sure how long that will last when she finds out she needs to wear it to bed.  I can't image that will be comfortable.  The goal will be to slowly increase the angle of her foot to get it into less than 90 degrees.  Imagine standing flat footed and raising your foot off the ground so only your heel is on the ground.  She is unable to do this at all.  Do you have any idea how much your toes are involved in wearing flip flops?  This is also something very difficult for Reagan because she can't wiggle her left toes.  And although this doesn't sound like a big deal, the tightness increases over time when the muscle isn't used correctly.  Ultimately it is causing her to trip more over her toe (because she doesn't lift it when she's walking/running).  You will notice in the picture that Gary used the saw to take off the cast.  This was a first for Reagan and she did great!

It's off to the endocrinologist today for the much anticipated appointment that we made 5 months ago.  Prayers for an anticlimactic appointment where she says, "that's no big deal...come back in a year and we'll see if anything has changed."  Although I'm preparing for, "we need to do blood work, follow up in 3 months and she needs to start taking medication to control this."  I would LOVE to be wrong!