Then of course, I had to add our little guy in his blue...
At his 2-week checkup on Monday, he weighed 8 lbs and 14 oz and had grown to 21.5 inches! So he is definitely growing and thriving. We also found out he does in fact have duarte galactosemia, which is the same genetic disorder Avery & Tatum were born with. I took the news alot better this time, partly because I expected it this time, and partly because I am planning to keep on breastfeeding him, even though we're not 100% sure it's best. The (very limited) research recently has shown that there are no significant delays in DG (duarte Galactosemic) kids who are breastfed vs. kids that had galactose-restricted diets. I wish I knew that back when Avery & Tatum were infants... they both had to be weaned immediately and put on soy formula, which was heartbreaking for me. I remember the news being so devastating back then, finding out there is something not "normal" about your child, and then being told what you are trying to do to nourish your child, breastfeeding, is actually a toxin to their little bodies and could damage them permanently.
All this to say, Bodie does have duarte galactosemia, but thankfully, he is thriving on breastmilk and we are planning to continue, unless God or the doctors tells us otherwise. The fact is DG kids do sometimes have delays, whether their diet is restricted or not. So regardless of whether I switched him to soy formula or breastfeed him, it is possible that he could struggle in certain areas, just like Avery & Tatum might struggle in certain areas... whether it's a result of being DG or it's just the way they are, we will never know. But we are so thankful for our kids good health and we know that they are beautifully and wonderfully made by our loving Creator.
Laney, by the way, is just a carrier of galactosemia, but doesn't actually have the disorder. Here she is at her teddy bear picnic at school last week. She has become a very interested and affectionate big sister in the past week. When she sees Avery or Tatum having a turn holding Bodie in their lap, she wants a turn too. So I put him in her lap and she kisses his head and hugs him sometimes a little too tight, but she definitely thinks he's lovable and sweet.
3 comments:
they look so cute
rachel
I will be praying that you get to keep breastfeeding as long as you have your heart set on!And that he, nor your girls, have any long term side effects! What a wonderful mommy your kiddos have!
Hi Melanie, I found your blog searching for galactosemia. My daughter is a DG and she is 6 months old. I am extremely worried because there is so little information about this condition. She was breastfed until 6 month old but now we are starting to do 50/50 because her level of galactose is still high for her age. I would love to connect with you and learn more about how your kids are doing.
I am very scared because I don't know anybody else who is going through the same thing.
My email is canareyka@gmail.сom
Many thanks in advance!
Dasha
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