Monday, May 7, 2012

I wish...

I wish someone had prepared me for the worry that comes along with parenthood.  In all honestly though, I don't think its something that you can adequately prepare for, it is on the job training at its best!  Its not that I thought parenthood would be worry free, I just didn't understand what it would feel like, the way it can keep you up at night when you are already weary, the way it pulls at you, the way you are drawn to google even when you know you shouldn't, the way it reminds you that despite your best wishes for you child, there is only so much you can control.

We have two amazing and blessed children, in our humble and unbiased opinion!  In the broad scheme of life they are healthy, happy and well adjusted, they pass the eye test.  Despite our constant blunders, they are surviving us.  That being said, we have had some health concerns with Luke.  Sometimes I get pretty bummed out when I think of how many doctor's visits he has had in his short 30 months and how many specialists he has seen.  Then we make another trip to Children's Mercy and I see the despair of so many parents and I am ever so grateful that we are there for the reasons that we are and I hold our little man just a little tighter and say a thank you to God that he is as healthy as he is.  I am grateful that these are the issues that we face and that he comes home with us each night and runs and plays as any child should.

As most of you know, we have been somewhat concerned with Luke's slowed growth since he was about 9 months old.  I was told that all kids growth and appetites slow at this point in time and as they become more mobile.  In all honesty we weren't shocked that he didn't weigh a lot, but we started to grow concerned when between 9-24 months his height barely increased.  I would listen to other parents talk about how their kids practically grew over night, that their clothes were always too small, that they were always buying new shoes before the old ones wore out.  Luke on the other hand rarely outgrows his clothes, he wears the same size shoe as last summer and we watched as kids 6 months+ younger than him slowly started to creep past him in height.  In February after a height and weight check that again showed him at the 5th percentile for both height and weight, we were referred to an endocrinologist.  Friday was our first visit.  We had already ruled out many disorders through blood work so I knew going in that he didn't have an Endocrine disorder or Celiac Disease etc.  Some blood work had shown a low insulin like growth factor so we were prepared for that discussion.  The Endocrinologist believes that Luke has Constitutional Growth Delay.  Basically kids with this have decreased growth during the first three years of life, but then grow at a normal rate, just on the low end of the curve.  Bone age xrays in these children show that their bone age is actually younger than their chronological age.  When puberty hits these children are often again delayed behind their peers which further accentuates their slowed growth, for some kids they achieve their full height potential just a few years later than their peers, for other kids they need growth hormones, or medications to help keep the growth plates open longer if they fall too much below the curve during puberty.  Based on our heights, the Endocrinologist believes that Luke should be in in the 90th percentile for height, not the 5th.  We are holding out hope that Luke can achieve his full potential height.  One of the concerns with kids that have CGD is the emotional stress of not only being small, but going through puberty later than their peers.  At this point though it is just too early to know what will happen, hopefully Luke catches up over time and it won't be a challenge for him in high school, but in the mean time it is a hurry up and wait scenario.  To add insult to injury, Luke's asthma medications can have negative growth side effects, so we are working to balance the least effective dosage of asthma medication to potentially improve growth with keeping him breathing well.  The positive is that in the last 6 months at the higher dosages of these meds Luke has still gained 2lbs and grown just under 2 inches, which for him is HUGE growth! I know I can't worry about that which I can't control, but you always want the most peaceful road for your children, this world is tough enough without other hindrances.  I am grateful that there is nothing more serious going on though.  And, on the bright side, Luke and Bo might wear the same size clothes which would make shopping and laundry a whole lot easier! :)

In the mean time, please keep our little man in your thoughts and prayers.  Please pray that he grows strong, whether that it is height and weight or in character (hopefully both!).  Mostly, we want him to be healthy and confident.  Please keep him in your thoughts Thursday morning also when he gets his second set of ear tubes!

1 comment:

  1. Being a parent seriously is the toughest job ever. You always find a bright side and I love that about you. Praying for that sweet little guy!