Feeding Tube Awareness Week 2016- Day 5

Today's Topic:
It can be a challenge when family members or friends do not understand why you or your child needs a feeding tube. However, many family members do a great job of supporting their loved one. Encourage your family to learn about tube feeding, lend their support, and share their story.

I remember the stress I felt as a new mom in those early days of tube feeding where I was trying to explain to people that eating for Jillian just was not a safe option. Some people jumped right and and asked how they could help, other people made very hurtful comments. Those early days were rather overwhelming and to be honest we were just living in survival mode. I can't even start to explain how much it meant to us when people would come see us in the hospital and bring us food. We had family call the hospital and buy us meal tickets so we did not have to worry about eating.
In every situation there are going to be people who react differently. Over the last 3 years we have had relationships that have grown, both with people who we have known for a long time and with people we have met in the past three years. I am truly blessed to have our support system. People who cry with me when I have cried and danced with us in the happy moments (like the people I have spent time talking to since our appointment yesterday who want to figure out all they can to help us figure out what is going on and have listened to me in my really odd emotions at the moment). We have had friends that have spent time figuring out Jillian's stuff and can explain to others why Jillian needs a feeding tube and help us in looking for answers. We have people who join us each year in raising money and walking for our children's hospital. We have also had relationships that have taken hard hits over the past three years when people were either bothered by Jillian's stuff or did not understand when we can't do everything they want from us because we were busy with Jillian. Our goal is to educate people about Jillian's needs but I never want to shove it down someone's throat, especially if it makes someone uncomfortable.
I want to thank everyone who has come along and loved us during the last three years. It has been a quite the journey. This would all be a lot harder if it were not for some of you. Thank you to the people who silently lift us up in prayers. I have heard stories of people praying for us that I had no idea even knew our story. I can't even explain how much it means to me when I hear that people are praying for us... thank you!

On a side note (if you have not read yesterday's post read that first and then this will make more sense):
Today I just feel like my head is swirling. We have a possible diagnosis but it is not confirmed. I have sent a message to Jillian's ped to figure out what dr we need to see next, however she only works on Mondays and Wednesdays and we were at the dr in Madison until 5pm yesterday (we had a 2:45 app so it ended up being a long afternoon with the hour and a half drive each way) so I will most likely have to wait until Monday to hear anything more. I feel like we are in limbo right now. I am trying to learn as much as I can so I can ask good questions. There is also a part that just seams surreal that we might have a diagnosis. I promise I will share more once I have details and know for sure what is going on. 

Jilli doing school work this morning (I had done the square as an example). She begs to do school work. It has been a busy week of doctors so I think she was really craving some normal at home time today. She loves working on school work and can identify some of her letters at this point. 

Oh that hair! She had a bath last night and went to bed with damp hair and this is what it looked like this morning! She loved playing play-dough though and she is very happy when mommy agreed to it being a jammy day (although I did change into yoga pants because I really don't need the oxygen guy giving me funny looks for Mickey Mouse pajamas! He has a enough to make a face about with the house being a mess today and I frankly am just too worn out from the week to do too much about it today)