I just wanted to give an update on Evie. She is growing SOO much! Its hard to believe she has only been with us 3 mo. It seems like she has always been a part of our lives. The formula is working really well. She was born at 3lbs 5 oz and now weighs 8lbs 3oz. Almost 5 whole pounds in 3 months! I have had to retire some of her preemie clothes and newborn clothes as well!! She is getting soo tall too! She was born at 16 1/2 in. and now is just over 20in. She also has not vomited since Tuesday night at midnight. Whew! Maybe she is growing out of it!
(I am going to brag a little in the next paragraph. Just a warning in case you wanted to jump ahead.)
Along with weight,which is one of the most important things to look at for an LCHADer, she is also doing well developmentally. She has rolled over 2 times, is teething, knows her pacifier, smiles constantly, and stares intently at whoever is feeding her. She is brilliant lol! I am guessing she will start composing her first symphony at the age of 3. (Thats the goal, anyways) HAHA! She also has wonderful people skills: The Drs and nurses just love her, almost like she is a celebrity!
As far as her meds/supplements go, she is still on Reglan,(for Reflux/vomiting) although we decreased it last week because she was so sleepy, she wasn't waking up! She is also on DHA (for eye development/prevention of retinopathy.) We still have her on Iron(for low iron, obviously) and Polyvisol (a multi-vitamin) I also found out the oddest thing: she can't use too much sunscreen because of the oils! Thats just crazy.
We got some test results back, as well. We were waiting (for 2 months mind you) on a DNA Sequencing test (I'm not too sure what that means, really) But we found out that she has 2 mutations of LCHAD on one Chromosome and 1 mutation on the other. Basically, all this means is that she has the gene, its just not working properly (its mutated) Some LCHADers are simply missing the gene. Of these mutations, 2 are common , found with most LCHADers , and one that is found on only 2 other LCHADers in the world. Crazy that they have all this documented.
We are going this weekend to Alexandria to visit her Mimi and PawPaw. Of course I had to let her Ped know because we will be a few hours away. I am hoping the visit goes smoothly and we come back on Sunday, having had no problems.
Thanks for letting me brag on my little one. I am so proud.
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Awesome! I'm so glad to hear how well she's doing. I'm also really interested in the genetic sequencing test. If Evie has mutated chromosomes, will she pass LCHAD on to her children, or is it a recessive trait? If you guys have other kids, are they are a greater risk for LCHAD? It's amazing how God designs each person so uniquely. I think about this a lot since we have one, possibly two, autistic kids. Did God just design us to make autistic babies? It's fine if he did--I think they're great, but I do wonder about those things. Did he bring you and your husband together because he knew you'd be able to nurture such a special baby? Sorry about rambling--just how my thoughts roll!
ReplyDeleteHello Apples!
ReplyDeleteLCHAD is a recessive trait. I am not quite sure what the percentage of it being passed on to her kids would be. I know that her hubby will have to have LCAHD or be a carrier for it to get passed on. Patrick and I have a 25% chance of having another LCHAD baby, a 50% chance of them being a carrier, and a 25% of being completely unaffected.
I am not quite sure why we were dealt the hand we were, but I like to think that there is a purpose in it. I like to think that we are the only ones who could handle Evie and her condition. Like, maybe there is a baby pool in heaven where God chooses specific babies for specific couples to have. Who knows!!
That is so wonderful, i am so glad she is doing better, been praying for all of you!
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