A New Day…What Will It Bring?

Posted by Melissa | Filed under Home Life

Today is so beautiful. The crisp morning and the warm sun tickle the senses and promise good things to come. I plan to sit on my porch with my first cup of coffee in a few minutes while my 4-year old races around the yard and my precious little one still sleeps in his bed.

He sleeps more than the usual baby because his lowered blood counts make him more tired. He also doesn’t eat as much as a normal 10-month old baby does. His main source of food is still formula. He’ll have at least 3 bottles through the night and another shortly after waking. Then a little while later he’ll have breakfast, either cereal or fruit.

I worry because his arms and legs are so skinny. He’s missing the usual baby chubbiness that my other 2 children had. His spleen and liver are so big that they’re cramming everything else inside his tummy, which causes him to feel full after eating a small amount. He does drink 5-6 oz of formula every 2-3 hours during the day, but when he has solids for breakfast, lunch, and dinner, it’s only about a small jar of baby food.

Gosh, my other 2 were eating big jars of baby food and full bottles by this age, as well as a variety of table foods. Oh, I wish they would hurry up and start enzyme replacement therapy (ERT). ERT takes care of all the other symptoms of Gaucher Disease – it’s just not capable of crossing the blood-brain barrier to get rid of Gaucher cells there, so it doesn’t help the neurologic effects of this disease.

But the ERT treatment will eventually return his spleen and liver to normal size so he can eat normal, and breathe normal. He breathes really quick and shallow because his lungs don’t have room to expand to full capacity. Oh, how my heart breaks with all that he has to deal with on a daily basis.

We’re supposed to hear something this week about when we’ll be starting treatment. It costs thousands of dollars per treatment, so it has to be approved by our government, which means a lot of red tape to get through before approval. It certainly won’t be fun for him because it means an hour drive to the hospital every 2 weeks, then he has to have an IV in for at least 2 hours, but it will be worth it knowing that it’s helping.

I’m praying today that we’ll hear that our 4-year old son is a bone marrow match for Kyle – it’s his best chance of not rejecting the transplant. Please God let something go our way for a change!

Permalink | Comments (1) | Apr 29, 2009

One Response to “A New Day…What Will It Bring?”

  1. Nell@SheSnaps.com Says:
    April 29th, 2009 at 8:02 pm

    Your words bring tears to my eyes. It’s your reality right now…his, too. No Mother wants to see their child suffer, even in the smallest of ways, and your son is dealing with a lot. I’m praying that your family is a match. I’ve also got many friends praying for you and your family.

    Nell

    Nell@SheSnaps.com’s last blog post..wordless wednesday: glory

Leave a Reply