Galactosemia, now

26 Aug

Isaac is now 14 months, and he really is a wonderfully healthy, normal baby.  He hasn’t suffered from cataracts, and although his blood work hasn’t always made me happy, his galactose level has continually gone down.  I had envisioned him getting below 4 so much more quickly than he actually did.  But, regardless, he is there… a 3.2 Gal-1-P as of the end of July.  His doctors and I are over the moon for that.

Isaac has always tended more towards the small side, but last week confirmed it again as he registered in only the 9th percentile on weight.  I was disappointed because he dropped off the chart in height.  I was told that we are doing everything right and advised to make sure that his calorie count stays up.  He will be on infant formula at least until the first of the year at which point we may be able to transition to toddler formula.  Hopefully with the addition of more teeth, he will also be able to eat more and more.

Isaac’s fine motor skills have been just as they should be, but I feel like his gross motor skills are a little behind.  He is such a content baby that he has never been in a hurry to master anything.  Even now, he refuses to roll from his back to his stomach.  The child can crawl and pull himself up, but when he is on his back, he will stay there until someone puts him elsewhere, the little turkey.  This week though, he has moved a little more towards independence as he will now walk along behind a push toy.

Thankfully, the boy is a great sleeper.  Maybe it is because as the 3rd child, he was forced to sleep without being held.  Or it could be that since his room is the farthest from mine in the house, we don’t ever hear him in the night.  Either way, he sleeps around 12 hours each night and 2 hours in the day.  At some point, he and Aaron will be sharing a bedroom, but I want to try to keep them separate for as long as I can so that Aaron’s middle of the night wake ups will not affect him.

I hardly remember our life without Isaac now… or our life without Galactosemia.  I really do believe that God is using this disease and will use it in our family and in Isaac’s personal testimony for many years.  And as much as I really do hate Galactosemia, I am believe that God has a redemptive purpose for it.  So far, it has already helped me form friendships with some amazing people across the United States, and it will be the catalyst for our family’s first trip to Disney World next summer when we attend our first Galactosemia Foundation conference.

I am just forever grateful that God blessed me with this boy, my Isaac, my laughter… I do love him so.


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