We had a busy day yesterday. Lila had school in the morning, then she had an ENT appointment, then a hematology appointment. She was such a trooper! She sat still for the ENT when he was looking in her ears, then fought him when he wanted her to stick out her tongue so he could check out her tonsils. I told her to stick out her tongue and say "Ah", and she said no. Then later in the appointment when he was reviewing our home sleep study, she stuck out her tongue and said "Ah" about 5 times. He was laughing at her. ( I will post tomorrow about the ENT appointment. Would love to have some feedback/advice on what we are about to do.)
Her hematology appointment was scheduled about 45 minutes after the end of the ENT appointment- which was fabulous because I got lost twice between the two offices They are approximately 2 miles from one another. AAAAGGGHHHH! The good news is we arrived right on time. : ) We talked to the doctor first and Lila was a champion. This time when the doctor asked she stuck out her tongue and said "Ah". I was dreading this appointment. Taking her blood isn't easy. She was in the NICU for 7 weeks, which isn't long, but long enough to "use her veins up". Or that's what the people trying to get her blood always say. So when the girl walked in alone I was about to tell her that we were probably going to need some help but before I could get the words out she said these magical words. "I think we're going to be able to do this with a finger prick." YES! That's what I'm talking about! It worked. Lila didn't like it much but it was about 95% easier than our previous appointments. We waited for the results and were pleased with them. One of my concerns was that Lila doesn't take a vitamin with iron. We have finally gotten her constipation under control with diet alone. She hasn't been on Miralax for over 6 months. I was concerned that they were going to tell us that her iron was low and then we would have to put her on vitamins with iron. This would probably mean that we would be forced to start the Miralax again. Very controversial subject but we aren't in favor of the long-term use of Miralax. ANYWAY! It's not relevant at this time because her bloodwork looks great. The only result we are waiting on is her T4.
Last but not least, I never posted Lila's stats from the geneticist appointment. First of all, I love what she says at the beginning of the paragraph. "Lila is a very pretty, interactive child." Okay, okay, she probably writes that on all of the clinic reports. On with the info- She weighs 22 pounds 8 ounces which is about 25th percentile on the DS chart. She's 85 centimeters, 75th percentile on the DS chart. Her head is in the 50th percentile on the DS chart. In the geneticist's final assessment she writes "Lila Nargi is a delightful 2 1/2 year old young lady with Down Syndrome." I wholeheartedly agree.
Signing off to catch up on some much-needed sleep~
Linda
What specifically is Lila eating that helps her constipation?? Raeleigh is extremely picky and eats chicken nuggets and pizza mostly. She has HORRIBLE constipation and is on Miralax. Like you, I don't want her to be on it long term. We are seeing a nutritionist this summer to try and help her eat new foods.
ReplyDeleteWe are lucky that Lila is not a very picky eater. We do, however, force her to eat some things. Most of the time she's pretty good about it but she's so stubborn and we can't take the chance of her getting constipated again so we persist. She eats blueberries and mangoes and drinks a lot of prune juice. She's lactose intolerant so she can't eat regular yogurt. She eats coconut milk yogurt- and we can really tell a difference in the consistency of her poop (sorry for the detail) when we run out of yogurt, even for 1 day.
ReplyDeleteI love that the geneticist really "gets" people first, Down syndrome down the line. She's pretty, interactive, delightful and a lady FIRST, then the doc mentions she has Down syndrome. Pretty cool.
ReplyDeleteI LOVE Dr. Lewanda. And I hear you about the Miralax. Sammi's been on it longer than I can remember. I've modified the dosage continually, depending on the state of "things", but because she's so picky I have to have her on a vitamin with iron and can't give her things in her diet that help with constipation. Fortunately, we haven't had a bad episode in ages, but I'm contstantly battling to find the happy medium.
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