Tuesday, 3 May 2011


Tomorrow is our big appointment with the pediatric hematologist. While it would be great to get good news (and by good, I mean find out that he has the "better" form of sickle cell disease), from the limited research I've done in the past few days I'm guessing that he has the worse type. That means a 90% chance of living until 20, average lifespan of 40. I am generally accepting (resigned might be a better word) of what this means for Nicolas' life and our lives, but not of the idea of burying another child (because my life expectancy at this point would exceed his). That just makes me sick. And to that I say, Naked I came from my mother's womb, and naked I shall return there; The Lord gave and the Lord has taken away, blessed be the name of the Lord.

Everyone has been asking how Nicolas is feeling. He's doing fantastic. If it weren't for the blood work we would have no idea that he was at all sick. He is huge considering his background (about 50th percentile on US growth charts), and at nine months is wearing or outgrowing the clothes that Tommy was wearing at fifteen months. He is happy as a clam, he eats like a champ, and he is becoming more and more active each day. He is learning to crawl, and unfortunately going backwards instead of forwards, but this is huge progress considering he learned how to roll over a month ago! He is very curious about things, most especially his brother and balls, and "talks" all the time. He is so much fun- we are so blessed.

Big brother Tommy is coming around to him. He loves to get him to smile, and delights in Nicolas' love. He says "he likes me!" in this voice of wonderment at least ten times a day. I still have to be careful when they are together, partly because Tommy's love can be over exuberant and crushing, and partly because his anger/annoyance translates into hitting or biting. It is absolutely getting better though.

We've gotten back into our routine, sort of. I think that is really helping Tommy, and if I didn't have to wake up so early for everything it wouldn't be bad for me either. Nicolas stays with me for anything we do, which meant my bible study this morning was interrupted repeatedly by dropped toys and loud shrieks...but thankfully everyone was very understanding. Nic has killer eyelashes, so he can get away with a lot. I am also seeing some flaws in our old routine, at least from the standpoint of operating with two. I did six loads of laundry Monday while carting Nicolas back and forth in a front carrier,lugging a basket on my hip, and herding Tommy...that may have to change. It is shocking how much laundry one tiny little guy can generate, by the way. Although, if you are a parent you already knew that.

Thank you all for your prayers! We certainly need them right now, and we really appreciate them.


ZRebeka said...

Thinking of you!

Jess said...

Lots of prayers your way today.

Taryn said...

praying for you!