Thursday, August 11, 2011

Medication is a struggle

We've been giving C liquid medications since we brought him home.  After months of trial and error we feel like we have it down pretty solid.  Then there are nights like tonight.  Usually, C drinks his medicine with about 20 ml of either breast milk or almond milk.  But tonight, he refused no matter what we tried.  Usually when this happens we suspect that the antibiotic will or is upsetting his stomach so he doesn't want to take it.

I hate these nights, we syringe each medication to him undiluted milliliter by milliliter, while he screams and struggles.

Tuesday, August 9, 2011

Happy Birthday C!!

I can't believe it's been a year.  It feels like it has been forever, and like C was just born yesterday.

We sang happy birthday and gave him a stuffed Monkey to keep at school.  C had some eggs with his breakfast because today he spontaneously gained the ability to eat them.  He had a banner on the wall at school and was greeted with birthday well wishes.  He's wearing a spiffy little outfit that his teacher gave him, overall, it is a very exciting day.  Saturday he'll have his first taste of cake!  I'm excited to see what he thinks.

In medical news, we go for our 12 month checkup (YUCK! Shots), our GI follow up and our Urology followup.  I'm hoping we get released from both gastroenterology and urology.  If we do we'll only be giving C one med twice a day, which would be amazing.  Our situation is pretty stable now.  There's hope that we'll remain stable and not need further interventions.

This year has been a roller coaster.  I'm so grateful to have C with me and my heart aches for the moms who will be facing this anniversary without their babies.  I can't think of C's birthday without acknowledging all those parents whose children aren't with them now and all of those whose children are still waiting for their repairs.  I never had a chance to meet Joshua or Ewan or Cora but I think of them often and they have changed my world forever. This is a club to which I never wanted to become a member. I miss blissful ignorance.  I'm incredibly happy to share this birthday with my son.  I'm aware of how fortunate that makes me and I pray that I can have many more, but I know, it isn't a certainty.  I pray I will never experience my child's birthday without the visceral awareness of how blessed I am to be there.  Life is incredibly fragile and precious.  Every single day I'm reminded how fortunate I am to have C with me.  Every day I know it could have just as easily been a different story.

My son turns one today, through the grace of God, medical science and the courage of the parents and doctors who walked this path before me.  I thank all of them and pray they find peace and joy in their lives.