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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Sunday, November 11, 2012

Happy Veteran's Day!

Things have been busy here, I haven't had time to post.

Friday night we had a family over for dinner. The couple has 2 girls, Grace and Hope. Hope is 5 months old and has Down syndrome! We met them through Lisa, our mutual early intervention teacher. They are the nicest family! We had a great time and really connected. We already talked about Lauren and Hope getting an apartment together when they grow up. LOL! (Not that I'm ever ever ever letting her move away from me!!) It was really awesome to connect with another family who really 'gets it'. Their daughter also had open heart surgery at the same hospital as Lauren. We definitely hope to get together with them again soon! Ryan and Grace got along great and played all night. Ryan even let her sit in his Thomas the Train chair. I have never even been granted such an honor.

Tonight the kids and I had dinner with my grandparents! It's been so awesome with them living back in Michigan. I missed out on spending time with them for the vast majority of my life so it is more than wonderful to see them with my children. It's amazing.

Since today is Veteran's Day I got to thank my grandpa in person and tell him thanks for fighting for us. His reply was, "Eh, I didn't fight that hard." That's exactly the kind of guy my grandpa is! He joined the Navy at just 15 (he was a bit, um...creative with his birthday when he joined).

At church this morning a kid with Down syndrome happened to be sitting right in front of us! He looked to be about 13 or so. Greg and I were so excited! Then after service Ryan and I were walking around and a little guy ran up and hugged me, out of nowhere. He looked to be about 7-ish. His dad said "Oh, I'm sorry! He's special," almost apologetically. I said, "He sure is. I love hugs!"

Can you tell I had an awesome day?!

Tomorrow Lauren and I have a busy day planned. We have an appointment with the helmet people at 9. They're hoping it's a final scan and we can discontinue the helmet therapy. That would be great since we never make her wear it anymore, except for at night. She doesn't sleep on her back and she's always either being held, playing on her tummy or practicing sitting up. There's not much pressure on the back of her head so if anything, it won't be getting worse.

Then at 11 we have her audiology appointment (the hearing doctors). I have been so excited for this! I think Lauren probably hears fine right now, this is a routine scan for kids with Down syndrome at this age. But if she doesn't hear fine and needs hearing aides I am 100% happy with that. I had hearing loss as a kid that wasn't corrected until a couple sets of tubes and maturation. I've read before that the ears or the sense of hearing (or something like that) is one of the last things to mature and can improve with age for some kids. It did for me. I am a twin and we were preemies. I weighed 2lbs 12oz at birth and had surgery as a baby to correct bilateral hernias. I wasn't exactly the healthiest baby ever. I never had hearing aides, my mom said it wasn't ever something the doctors wanted to pursue.

In hindsight, I kind of wish I could've had them. I realize that I would've hated them at the time. I hated not being able to hear, I hated always having to sit in the front, I hated going to my audiology appointments and sitting in the booth for hearing tests. But to actually have known what was going on more often? It would've been way better. I just didn't want to look "different". Hopefully Lauren won't mind too bad if she ever needs them!

I want her to hear me when I tell her how perfect she is, you know?

Lauren has also managed to develop a weird rash over the last couple of weeks. It started out as just some redness behind her knee but it looks worse now. Of course I noticed it after her bath on Saturday night, when there is nothing I could do about it! I'm calling the pediatrician to see what they think. I'm thinking it's probably excema. It's dried out since this picture was taken and it really looks like excema. I might be trying to talk myself into that answer. Is that horrible? I'm so afraid it's a food allergy. I finally got a kid that will eat literally anything we give her. She had meatballs, mashed potatoes and gravy for dinner tonight. Ryan would never ever eat anything close to that. I dread the very idea of eliminating everything in her diet and building back up to see what causes a reaction. Please pray that's not it.

That may seems trivial but you don't know what a battle food has been with Ryan. I give you a short list of foods he'll eat. Fruit, carrots, celery, the occasional bell pepper, crackers, peanut butter, applesauce, waffles, pancakes, pizza, chips and salsa, Spanish rice (though not white rice), fruit snacks, candy, cookies and cereal. No joke. That's it. We can get him to eat scrambled eggs if he is heavily distracted by something interesting on TV and we can shovel it in. He will eat a happy meal if we bribe him with sips of Coke. He hates meat. Won't touch beans. I've tried giving him microscopic bites of chicken in chicken noodle soup and he spits out the itty bitty chicken bites. It keeps me up at nights that he can't possibly be growing with his measley diet. But he somehow does. The pediatrician assures us it's really common for kids his age. But I feel so incredibly guilty about it, like I'm starving him or something. I reeeeallly would love to have just one kid who will just eat.

Okay, now that I've just bared my soul, I'll give you some pictures. (Yes, the food issue is that big of a deal to me!)

The pictures were taken only 3 days apart! It's now more flat looking with the dots on the outside. It's really dry in the larger part of it.
She is trying SO hard to crawl lately. As you can tell from the top picture, her main motivation is the cat! She can get herself backwards pretty well, but hasn't quite figured out forward motion yet. I think we're all in a lot of trouble once she does!
Who wouldn't want to catch this adorable face?!

1 comment:

  1. Were you able to find out what the rash is? Interesting! I hope its not a food allergy! ps. I think the picky food eater is a first born thing ;)