Welcome to my blog!

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

Sunday, March 25, 2018

Lauren's recovery

Lauren is doing fantastic! Her surgery was a week ago Friday. She was a champ in the hospital, she was wheeled to the OR smiling and waving. The staff was so phenomenal with her and everyone assumed she could talk to them (which I love, since she can!) She only took Hycet (liquid Norco) for me on Saturday night, and then only because I was afraid she'd wake up hurting. She took Motrin maybe twice. Since then, nothing. She tells me, "Mommy, it doesn't hurt!" and I believe her. We ended up spending the night in the hospital after surgery because her pain was not well controlled and she was having some brutal post-op nausea/vomiting. I was afraid to take her home when she couldn't keep anything down. I was SUPER worried about post-op constipation because after her tonsillectomy it was pretty torturous. But I started giving her Colace the day after surgery and she's pooped every day (sorry, TMI but if you are a fellow special needs parent reading this, you know how exciting this is!!!).

She's getting around really well in her wheelchair both at home and at school. (I sent her for part of the day Thursday and Friday.) She went into her classroom at church today and did great. She did have two potty accidents at school on Friday, I think it's still really hard for her to not be able to just go to the bathroom if she needs to go potty. She did great for me today though, no accidents all day.

She took naps every day Saturday-Thursday, so I was worried about sending her all day to school on Friday but she did fine. She didn't nap yesterday and did okay. Today, she didn't technically nap, but she did fall asleep around 6:30 so we finally just took her up and put her in bed. The time change has been killer for us this time around! Lauren has always been a sleeper-inner (thank God) but now she's up with the sun. She's always been a kid who needs more sleep than everyone else, so for her to be awake for a good 12 hours straight is a lot for her! She feel asleep on Greg while they were watching Doc McStuffins this evening. How is one tiny girl this adorable?!
We've got a busy week coming up, I'm glad I'm off work until Friday. Monday she has her 6 year old well-visit. Tuesday and Wednesday are pretty normal, then Thursday is her 2 week post-op visit.

Thursday is also her 6th Heart Day! I cannot believe it's going to be 6 years since she had her heart surgery. 6 years since she was so, so sick. I will never forget how terrifying that time was and I'll always remember how incredibly blessed we are to have her with us today. She really is very easy to cherish and easy to love. I can't say she's easy to parent, but all the best things are worth fighting for.

Sunday, March 11, 2018

Weekend!

We went swimming twice this weekend! Friday and Sunday we went to the rec center with my twin sister and her boys. It was so much fun! Lauren has always loved water, and she will be out of commission for swimming after her surgery.

Ryan had a blast, he was jumping into the water, going all the way under, etc. Things we thought we'd never ever see him do. He is so proud of himself for doing so well and it makes me so happy! We finally got him his own membership card with his name and his picture on it. He thanked me several times for his membership, which was adorable.

He is the best kid ever, I have no idea how we got so blessed. He is doing so, so well. We are beyond thankful.

Wednesday, March 7, 2018

Learning girl!

I am so afraid to say it out loud....but I'm going to anyways.

Lauren has been so good! She's easy to be with, super sweet to play with, loves hugging us, wants to play (very imaginatively) with her Barbies. She's often already playing independently with her toys when we get her up in the morning. She usually wants one of us to play with her, but she is getting better about doing this independently. She goes to sleep without arguing. The one thing we can't get her to do is homework. I think she's "school out" by the time she gets home. On a rare occasion she is willing to do it, but a lot of the time she is just plain too tired. Kindergarten is all day and she's always been a kid who needs a lot of sleep. She gets home around 4:30, then is still sometimes napping after school, then we wake her up for dinner, and she is ready for bed by 8pm.

She's doing awesome with reading. Today they learned "-at" words. We were watching Doc McStuffins this evening and her brother got a toy bat, and I asked her to spell it. "B-A-T!" She's really learning so much this year. We're currently trying to get a second year of kindergarten for next year, I think (and so does her teacher) that with an additional year of this curriculum, she could achieve the kindergarten benchmarks academically.

Today at her school they had therapy dogs come in, and the kids got to read to the dogs. Lauren really loved this! I got to observe a little bit and it was so great to see. They had the handlers introduce the dog and then the kids got to ask questions. Totally unprompted, Lauren raised her hand, waited to be called on, and then asked what the dog eats. She originally said, "What eat" (I think) and her teacher corrected her to ask "What does she eat". I am so proud of her! She wasn't the first child called on, so she really had to remember her question, and then voice it to a person (a woman, no less. We all know she prefers men) she'd never met before. She is usually really shy with people she doesn't know very well. I don't think she talked at all the first month of school. It can take her some time to open up, so I was so incredibly proud of her for asking a relevant question!

Her surgery is coming up, it's a week from tomorrow. I'm suitably afraid, but we're as prepared as we can be. I have a ramp for our front steps. I think I have a shower chair. Our bathroom won't be done in time (we're trying to put in a farm/sliding door because we can't both fit through the doorway to reach the toilet, it's a small bathroom that was designed terribly. It's also our only main floor toilet. The doors take forever to order and we planned poorly.) We're going to just have to take the door off. If you know Lauren, you know she's OCD about doors. She's going to have to make due with a tension rod and a shower curtain until we can get a real door installed. I'm really worried about her pain post-op. She has a very high pain tolerance, but I'm still nervous. I'm worried about the logistics of it as well! It's really hard for me to carry her up/down the stairs as it is, and she doesn't currently have a cast up to her thigh. I'm hoping we can teach her to butt scoot up the stairs. It will all work out, and some of the logistics won't be figured out until we're in the thick of it. I'm trying really hard to be okay with this!

We've found an awesome occasional babysitter! We've only ever had the kids with a non-family babysitter a handful of times. I was super worried that Lauren would be a disaster or that Ryan would freak out. They both LOVED her! Lauren literally shoved us out the door for dinner, then asked for her multiple times the next day. I'm finding myself trying to find a time to need a sitter again soon.