Friday, April 8, 2011

Update on Bodie

I finally convinced Avery (and Brian) to let me try to cut her hair short for the summer. One of her friends at school just got her hair cut, so Avery was open to the idea. Up until now, she has always wanted her hair long. I reminded Brian that hair does grow back and he said it was okay, so I took her in the kitchen and started chopping. I didn't take a before and after picture, but the one above was the day after we cut it. She loves it short now and I do too! Easier to wash, easier to brush, easier to fix, just plain easy!

Brian put them in their matching pajamas and they came downstairs holding hands to show me that they matched. So of course, we had to get a picture of them looking cute and matching.

Then of course, I had to add our little guy in his blue...
Bodie has been such a good baby! He is sleeping between 5-6 hours at night now and usually goes right to sleep when we put him to bed at night. That did not happen with our girls, so I don't really know what we've done differently, maybe it's just him, but either way, we are very grateful that we are getting pretty good sleep for having a 2.5 week old. He is alert more during the day and I can tell he loves to be in the same room as the rest of the crew. He likes to hear all of our voices around him. Even though those voices are sometimes very loud and silly.

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.

Tatum got a special day with Brian this past week. Her class had a field trip to Dewberry Farm, our favorite little pumpkin/christmas tree farm, and Brian took the day off work to take her. They had a great time together and she loved having her daddy there with her. Here she is in the bluebonnets.
Tatum & Brian on the hayride
More pictures of Bodie coming soon...

3 comments:

Rachel said...

they look so cute
rachel

Erica said...

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!

Dasha said...

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