Getting Caught Up! - May 18

May has completely slipped away from me - and now I'm almost 3 weeks behind on updates.

The first week was super crazy busy because we had Focal Point at the church building and I went to help work the registration desk every day. I didn't realize how much I has missed being there last year when you were still in the hospital! You stayed home Monday and Wednesday for your therapy sessions, but you got to go with me on Tuesday and meet a LOT of people who have been praying for you and watching you grow over the internet. We also had a sweet family come have dinner with us that day - they had stayed with us two years ago during Focal Point, when you were still the size of a piece of rice. We had just gotten our first sonogram images when they were here last! We also went to dinner on Wednesday evening with one of my good friends from college and his wife. We don't get to see them nearly often enough considering they only live a couple hours away! So that week flew by and I'm sure you did some super cute things that I don't remember and some really awesome things that I wrote down somewhere else. Here are a couple pictures from that week:

Learning how to write with OT

You had a blast with this gift bag :)

We left Thursday as soon as Daddy got home and went to visit Nanny and Grandpa in Midland for a few days. Nanny has been asking when we could come down to meet all of her teacher friends that have been following along and praying for you also, so we figured Mother's Day weekend would be a good time to make the trip! We went visiting at the school Friday, then we took an unexpected to trip to Lubbock to get a power cord that Mama forgot (feeding pumps require power...) so by the time we hit the road Saturday, you were DONE with the car! We had to stop several times on the way home to get out and walk around and give you a break from the car seat!

The next week (last week) was just as hectic but not in an as exciting way...

Monday, you were still super cranky from the long trip and didn't want to do anything. Which was ok with me because I wanted / needed a nap too, but you still had speech therapy.

Tuesday, we went grocery shopping and then you got a short nap before we headed for your weight check. Despite the fact that you have been eating CONSTANTLY (it seems like) you lost weight. You went from 19 pounds to 17.8 pounds. And when they went back and looked, you've been on a downward trend since the middle of February. When the scale showed the reading, Nurse T and I both just looked at each other and our hearts sank. Then you stared to get really cranky because your nap got interrupted so we were all just done with that appointment. They switched you off of 2% milk and sent orders to our medical supply company to send us Pediasure... which we're REALLY hoping insurance will cover. When you first came home, they wouldn't cover the formula to fortify your feedings because it wasn't the primary source of nutrition (the breast milk was) so hopefully that won't be an issue this time. If not, we're looking at doubling our grocery budget for this stuff. Not a good way to start the afternoon. It pretty much went downhill from there - issues in sister's karate class; leak in the washing machine fill hoses; huge hole in the dryer vent duct (which I only found pulling the machine out to mop up water); totally forgot I had a conference call.... one thing after the other on Tuesday. Not a good day.

Wednesday was a little bit better. I was cranky after a trip to Lowe's and some handyman work; you were still super cranky and just wanted to take a nap. You didn't want to do much with OT and as soon as you heard the PT's voice coming up the stairs you started crying. After dinner though, we celebrated ONE YEAR of you being home! It technically wasn't until Thursday, but Daddy had to work late and sisters wouldn't be home so we ate cupcakes early. I had planned on making you another big cupcake like we did at your birthday party because you don't mind stuff on your hands now so I was hoping to finally get some smash cake pictures...but I totally forgot. So I ran to the store and grabbed the first cupcakes I could find. The icing was a little too hard to play with, but you didn't have any problem digging in to the cake! It wasn't quite the smashing mess I hoped, but it was better than nothing :)

Testing the waters...

The inside has yummy filling!

Big bites!

That helped improve the week slightly - but Thursday you were back to your cranky self again. Your PT wasn't able to get any work done with you because you just cried the entire time. She has suggested having someone new come work with you, hoping you will react differently to having a new face around. Her first day will be tomorrow so we'll see how that goes! Friday was another lazy day, which was good because it rained ALL day long!

Saturday, we had a karate tournament for Little Big to go to, came home for a quick lunch and nap for you, then off to Big Big's end of the year band concert. You absolutely loved the music! You were a bit whiny between the songs, but as soon as they started playing you just sat and stared. At one point, you actually started dancing to the song they were playing and clapping your hands. We got back home and I figured you would take a nap, but you didn't. We went on a walk with Daddy after he got home from graduation and then you were ready to crash.

Sunday was the usual: short nap during church services, cranky lunch, long afternoon nap and then you slept like a rock all night. One benefit that we found to the switch to Pediasure is that it doesn't have to be refrigerated, which means I can put the entire amount for the night time feeding in the bag at the start and not have to add more at midnight and 3:00 am which means I got to sleep most of the night too! Woohoo!

Anyway, that catches us up to today. We're getting closer to your sleep study and hopefully closer to getting rid of the trach. It looks like the g-tube will be a little bit more tricky though. Keep working hard and keep making progress! Mama will eventually learn how to be patient :)