Life keeps rolling

Just because we add to the crazy does not mean all of the other crazy calms down, no, it just jumps in the mix :)

I would be lying if I did not say I was all around tired this afternoon. I keep trying to find motivation to clean my disaster of a house because people are coming over tomorrow (how does this house get to look this way sometimes?) but instead I have snuggled with my little girl and watched a Disney blog on youtube (if I cant go there right now I can dream right... disney is my happy place, but the thought of doing disney with oxygen and feeding tube is exhausting to think about)

Jillian has now been on oxygen for a little over a week and I feel like we are settling into our new life. I can set up an oxygen tank with no problems and even showed others how to do it the other day. The new scary feeling is starting to go away :)

There are still things we are trying to figure out.
-How to handle outside time at school. While she is inside at school she puts her tank in a little tikes shopping cart which she has adapted quickly to taking with her around school, however outside the ground is not even and it is causing the shopping cart to tip posing a risk of her oxygen tank hitting pavement. Not a good situation. She can not carry the tank on her own and outside time at school is one of the times when her o2 levels are the lowest without oxygen. I don't want her to loose that outside time and it is great for her gross motor skills. It is also not super feasible for her teacher who has 5 small children to watch to follow Jillian around with the tank. We are trying to figure something out that will work until school is out in June. Jilli and I are taking the summer off :) so we just need to worry about the next 4 weeks right now.
-The backpack our DME brought to hold her tank when we are out of the house already broke on her second day of being at school with it. It it not like her feeding pump where I can trow it in anything. I need to figure out what I can do to fix the bag or how to get a new one. Its the little things :)
-It is blowing my mind how little resources there are for kids Jillian's age on oxygen. There tends to be info for 3 demographics: people in wheel chairs, preemies and elderly. Jilli does not fall into any of those categories and even for people in those categories there is not much. I am realizing how fortunate we are for Feeding Tube Awareness and other parent support networks we have found in the feeding tube community. I felt like I have a place to ask the day to day questions of a child with a feeding tube, however there seams to be nothing like it for kids on oxygen, especially not a two year old walking child. I keep feeling like I can not be the only one asking these questions or looking for this idea however even after hours of searching on the internet I am finding it hard to find someone in a situation like us. I have read a lot of preemie mom blogs in the past week however even though both of our kids are on oxygen many of them no longer need oxygen by age 2 and are not starting oxygen for the first time at age 2. I was talking to my amazing friend Jaime the other night about Jillian's oxygen and trying to problem solve a few things and she started to laugh and reminded me that we had this same conversation almost exactly 2 years ago when Jillian got her feeding  (NG tube feb of 13', NJ tube April of 13', GJ tube July of 13') I talked about the feelings of the looks in public (hold on to that thought for a few paragraphs) and how to manage all of the stuff and she reminded me how I felt the same way when Jillian's feeding tube came into our life and how now it is so normal to us that I don't know a life without it. She is right. We will figure out all of the stuff with this too, it will just take time. (this is part of the reason why I blog, it is SO helpful for me to read blogs of other moms who have had some of the same experiences we are having)
-One of the things that I feel like we have a good handle on now is how to secure the oxygen. After having secured feeding tubes to my child for over 2 years I have become use to taping and what not. At least with oxygen it is not anywhere near as hard to put the oxygen back on her as it would be if her tube came out. I have made her multiple head bands this week with snaps to keep the oxygen in place. They are working AMAZINGLY well and they make her smile. We were able to not tape her at all last weekend which is great because we try to use as little tape as possible on her because she breaks out with some tapes and we need she "safe" tapes to stay safe so we need to not over use them. For school we tape it because there are other kids and it is not like she is going tell you if it pops out of her nose (plus it is a struggle to get her to let us put it in her nose in the mornings). We got her really fun tape that comes in a log roll and has pictures on it that you cut out and use to hold the tube in place. She is LOVING her new "stickers" and showing off which one she has each day at school. We are trying to make this all "fun" for her because it is a part of her life and we can either mope about it or figure out a way to dance in the rain.

Ok, I told you to hold your thoughts about looks out in public a few lines ago, and now I'll elaborate. Jillian is a very social person. I think her favorite place in the world is Target, probably because we spend a lot of time there (it is one of the few stores we have here in the middle of nowhere) and partially because she finds it an adventure! Jillian has no restrictions about going places other then that we need to be near a children's hospital in case her tube has a problem.We try to give her "normal" life experiences and love to do things. This means we take her out into the world often. This also means we hear some crazy things from people who are trying to figure out why a child had tubes all over the place. We are human and our brains are inquisitive...  that is a good thing for our kind. However, can I ask one thing, if your child is asking you over and over again what is wrong with my child, please answer them. I teach children for a living (part of my tired today is from throwing a 4K mother's day tea party this morning for my class and each of them brought a special person to join) so I know they have tons of questions. Your job as the adult is to help them learn about the world. Either answer their question the best you know how or start a conversation with the child/child's parent. I would much rather a child ask me why Jillian has her tubes then for a child to yell over and over in a store asking their parent what is wrong with my child. Educate! When you ignore them you are telling you child that either their question is not valid or that the person they are asking about it someone we don't talk about. I would much rather you have a conversation about how all people are different and how some people need things to help them live and that is ok. Our nation is all up in arms about bullying problems, I'll tell you how to help solve the problem, it starts by teaching your toddler that everyone matters, and that starts by having some conversations that might seam awkward but matter.

Well back off my soap box... We are also grateful to have Brent back home. He left on Sunday and got back yesterday from a work trip. He was able to catch a little bit earlier flight then we first thought so he was home at dinner time instead of bed time which was nice. He was gone last week for work as well so it will be nice to have him home for a little bit... just in time to have his deviated septum and sinuses fixed next week. We always seam to have something going on.

Well I probably really should go get something done around the house while Jillian is entertained watching the PBS kids app on mute (one of the weird things I love about this kid) and finish wrapping mother's day gifts.

Two more oxygen hair bows. My little girl likes pirates!

Painting!

Jilli napping. She is napping more since starting oxygen... that is because she is doing more now that she has oxygen

Brushing her baby's teeth. She also has her Feeding Friend's stickers on her oxygen. She was covered in butterflies that day

Getting ready to play on the iPad...

Did you see the shirt she is wearing in that last picture? It is her Brigg's and Al's run t-shirt. She calls it her Team Jilli shirt (she gets really excited to wear her Team Jilli shirt) On Monday we start a coin war at school to raise money for Children's Hospital. We are very thankful for everything that Children's does for Jillian. Jillian is honored to be in their most recent commercial. It is a video of her first laugh which happened at Children's when she was 4mo old. It is when she has her NJ tube in. It is at the 19 sec mark of the commercial. CLICK HERE to watch it and share :) We love Children's!