Brown and Pink Polka Dots : Good few days

We have had a good couple of days.

Saturday we went to brunch, grocery shopped, and the worked on cleaning around the house.

Sunday we went to church, lunch, errands and then hanging out just chilling.

Yesterday the yucky oxygen company came and picked up all of their stuff because we are all set up with Lydia getting oxygen from the same place as Jilli. This is huge! She is set up for auto deliveries and her pulse ox is coming tomorrow. The wheelchair company also dropped stuff off yesterday.

Today we went to Betty Brinn with Jaime and Emerson as a celebration of Jilli and Emerson's birthdays since they are both by Christmas and life is crazy around that time. We had a ton of fun! Taking two kids to a children's museum is exhausting... chasing a 19mo old with an oxygen tank through a children's museum was a new adventure... man am I tired tonight! After the museum we went to Bel Air for tacos. I love how Bel Air supports RMH and their tacos are so yummy! After that we stopped at the Learning Shop to see if they have any of the new playmobil 2018 catalogs in and much to Jilli's sadness they have not gotten their shipment in yet, hopefully soon we can get our hands on one, love that it is the free thing she wants lol! Tonight we cuddled up and watched a movie and hung out.

Sometimes a few good fun days are what we all need. Tomorrow is back to therapy which is fun, but work.

Jilli since Saturday has been very nervous about having another crash. Her body has been lower toned a couple of days but she still has had good days. She has had a harder time making choices but I can tell her mind is distracted. We sat down tonight and had a long talk about her crashes. We looked at pictures of her last crash. We talked about how she gets to do fun things in the hospital and we decorate her room. She got a really fun bag for Christmas from Aunt Sandi with decorations and fun stuff for when she is in the hospital. We added her special hospital gowns and built her take along playmobil hospital to add to the bag. Jilli likes to be prepared. We have no reason to think she will have a crash soon (other then February always being a hard month for her health) but for some reason since she woke up Saturday she has been very worried about it. If it happens it happens, there is nothing we can do about it other then making the best of it. After talking tonight and looking at pictures she seamed to be calmer about it and even cracked jokes... she asked if she gets new playmobil for every crash she has *eye roll* (Caroline sent her some playmobil last time and daddy bought her some... not happening every time kid!)

I'm thankful for a calm few days. I am thankful for extra time to listen to music while I clean. I'm thankful for some time to relax and watch youtube videos (I linked an amazing one in yesterday's post) and time to blog. Sometime I just need a few days like this.

school

she loves file folder games

my computer stopped working the other day, thankfully I'm married to an IT guy who fixed it. Jilli pretended to fix computers too

Jilli and her friend Caroline had a far away sleep over by using facetime. They watch a TV show, did a craft and decorated their feeding pump bags

Brent and Jilli made shadow puppets

Sleepy girl in her comfy lift bed

Lydia is Sesame Street pajamas

The place we use to buy our feeding tube belts after us if we would try out a new design for them. They work great! Even better then normal ones. They have streatch to them. We order them from Kangarootique if you are interested