Our week

Ever feel like you are on the starting line to a crazy week. That's how I feel today as I sit here and have my breakfast and blog in silence. Jilli has not been falling asleep until around 10pm lately so thankfully that means some days she sleeps in (yesterday she was up at 6am!)
Today we have therapy which is our normal Monday. We had to do he prior authorization for the state (we have to do it every 6 months) and we are hopeful that this 6mo period they give us more then 6 sessions. It is hard because we dont have a diagnosis thus they don't really want to continue to pay for therapy. But the child who spend most of her weekend toe walking still needs therapy. 

Tomorrow is what my tummy is knotted about. We have been waiting since October to get into genetics at Madison for our second opinion and tomorrow is the day. Brent has taken off of work and we are going to spend some family time together around the appointment and then meet up with some friends.
A lot of that last 3 years has been about waiting. When all of this started I figured we would have it all figured out by her first birthday... What I have learned over the last three years is that God does a lot of work in the waiting. I have had to trust in Him in ways like never before in all of this and the one thing that I know is that He is using all of this for His good.
The past 24hours I have been thinking about Bible verses where God says to be still and He will fight for you. I have been thinking about the times God made people wait days, years, generations, but yet He had his timing all along. He had not forgotten about His people. When I get frustrated about the timing of everything I try to remind myself that God has perfect timing in all of this and there is a reason we have needed to wait.
This is not to say though that I don't want answers, cause trust me I do, I am just trying to not yell at God like a 3 year old demanding what I want at the moment but instead trying to learn the lessons I am suppose to learn in the waiting, but it is not easy.
I am realistically hopeful for tomorrow. There are so many ways it could go. They could look at all of the data and give us a diagnosis right there or it could be more run around. I don't have my hopes up too high for a diagnosis tomorrow, but at the same time I don't want to loose hope, learning how to be guarded hopeful has been something that I have been learning over the last 3 years. Doctors are not miracle workers, they are humans that do their best to help people and understand the complex human body. God has used these 3 years as a reminder that He is the one to have our faith and trust in, not in other people. I am not always so good at that.
So please join us in prayer that tomorrow goes the way God wants it to go. He has a plan.

Friday Jillian's feeding tube gets changed out. Brent and I were laughing about how much of a big deal that felt like at one point but now it is so routine in our world. It also helps that most of the IR team is rather amazing and they really care about Jillian. We see them at least every 3 months, and have been seeing them since Jillian was 4mo old so we have gotten to know many members of the team and are grateful for their hard work. It is to the point where Jillian knows what is going to go on for tube change outs and they really don't even bother her. Jillian and I were talking last night about our week and I told her she had tube change out on Friday and she was all excited for a new tube. She is such a goof. We are so blessed that she takes all of this as well as she does. I think in part it has to do with her amazing personality and how great of a job so many people at Children's do to help make all of this medical stuff a positive experience for her. Like this weekend, my mom and I were talking about wheelchairs for something unrelated to Jillian and she was there too talking about wheelchairs. We mentioned to her how when she gets bigger she will most likely need a wheelchair. The only thing she wanted to know was if it could be pink... sure little miss, we will try to get it in pink.

Brent and I were having a conversation the other night about potty training. Jillian gets 100% of her nutrition in liquid form between 10pm one day and 5pm the next day. That equals a lot of pee most days but only between those hours. I have a feeling right now that child would be living on the toilet if she was trying to use that to pee. We also have the thing that we do not have any bathrooms on the main floor of our house and her oxygen line does not reach to any of our bathrooms... Brent and I were discussing potty training and is she ready, are we just holding her back because we don't think she is ready, should we be trying to potty train her right before a new baby comes, are we letting her disability stand in the way, are we not working hard enough for this. There were a ton of questions and ideas going back and forth and really we had not come to a conclusion about what is best for her, until she looked at the two of us and said "I am not ready to pee in a bowl yet." There we go, debate over, feeling like a crappy mom about this situation... over. She was clear as day about what she thinks she can handle. If she is not ready for potty training yet then I am not going to push it. She talks about how when she is big she is going to pee in the toilet, I don't think she will be in diapers forever, but if she can calmly and clearly state that she is not ready for it, then we will wait until she is a little older to try. Sometimes while us grown-ups try to figure things out and debate things the smartest person in the situation is the child.

Jilli has also had some great one liners lately! The other day as I went to eat pudding she looked at my tummy and said "Sorry baby, she is eating pudding." Not sure why she was sorry for the baby in that moment. Brent told her to put her hands up to get in her highchair and I started singing Party in the USA and she looked at me and informed me that she did not find me very funny. She keeps us on our toes. She is also most definitely 3! She has had her fair share of time outs lately. Her big thing to say when she is in trouble is that she is not Jilli anymore. Even when she is being sassy as all get out she still comes around to be sweet. She will frequently sit in time out and make up a song about why she is in time out, or the other day I was talking to her after she had been in trouble and as I went to get up she looked at me and said "thanks for everything mom." Man my heart just melted. 

Jilli and her uncle Jason and Emerson

She was very excited to be dressed up like a cheerleader!

Crazy hair, no pants kind of morning, playing with her toys, just being a kid!

I love her little coat!

Jilli was watching Just Dance Kids videos on youtube and dancing to them. Jilli spends a lot of time doing sitting activities so we try to find creative ways to get her muscles moving a little bit, even if it is only for a few minutes. 

Jilli also love Heidi Songs. I used them a lot teaching 4K and now she loves doing the letter and color ones. She thinks she is hot stuff too when I let her do the sight word ones. I know she is not learning the sight words at this point but she loves dancing to them.

Cosmic Kids Yoga! Jilli loves doing yoga and these are stories told by doing yoga. some of the moves are way too hard for Jilli but she loves to try!

Uncle Seth was teaching Jillian how to play video games this weekend!