The oxygen adventure

We are settling in to having new cords and figuring out how to secure her new tubing and how to start a new tank. Already had my first frustrating experience with VNA about her oxygen (sat at home all day Friday waiting for them to deliver more and they forgot) but with time we will figure out how their oxygen department works (we also use VNA for all tube supplies but the oxygen and tube departments dont work together)
But we are adjusting to life with oxygen. Jilli has more energy which is exactly what we were hoping would happen. It is OBVIOUSLY helping her. She still has low muscle tone so walking/moving will be a struggle for her but we have seen her energy level increase.

She got this for Christmas but I had put it in her room for a day we needed something new :)

Jilli helped mommy build the house. Jillian loved putting the blanket off and on Cinderella

Jillian also had fun taking it apart. She is loving Duplos right now! I just laughed looking at how surrounded she was by tubing

She brought me our containers. She was so proud of herself! I was impressed she did not get her oxygen caught on the gate

She is figuring out how to suck on her passy with the oxygen in.

I made Jillian special hair bows to hold her oxygen in place. I made a flap on each side that the tubing runs into. We have not needed to tape it on her the past two days because the hair bow keeps the oxygen line in place. I am all good for the least amount of tape on her skin. We will still use tape for days she goes to daycare to give her extra protection.

Here is the flap open. At first I did sew on snaps. Today I figured out how to do the plastic punch snaps. Those are a lot easier.

I just laughted at my dinning room table yesterday. State insurance paperwork, Tubie Friend's supplies, stuff to make hair bows, an oxygen regulator, a bottle lid, syringe, and a choo choo train. Isn't that what everyone has on their table?

Daddy and Jake put Jillian's swing up in a tree today.

Have oxygen and feeding tube... will swing!

She was so excited!

looking at our flowers with grandma

She walked all over looking at our yard... something she would have really struggled with before oxygen (I carried her oxygen tank for her)

I am kinda in love with her new pink oxygen bow that I made her this morning

My pretty girl!

My parents came over to hang out with us today and help with a few things. I am so grateful for all of their help!

We were counting the flowers

I set up the portable tank myself this time (the delivery guy set up the first one) I was nervous about doing it but I figured it out so Jillian could spend some time playing outside. Getting the hang of this.

Whoever owned this house before us had a green thumb. We have flowers all over the place (some really random places) and they make me smile in the spring

Jilli was more interested in the rocks

She was showing us her rocks. I was also happy that her orthodics fit well in her new sandals. Gotta love Stride Rite shoes!

Our living room is a mess... that means a toddler is having fun!

I made us cute oxygen in use signs for our house and daycare.

I like how they turned out... I would much rather have this oxygen in use sign on my front door then all of the industrial looking ones out there! Just because we have medical equipment does not mean that we have to give up cute... Jillian sure does not!