Thankful

This morning I posted a picture on facebook... my facebook memory from 4 years ago today. The caption said "Looks like we are going home today. Jillian gained good weight yesterday. To achieve that goal we have put a feeding tube in to give her nutrition all night long." It was my first post after Jillin got her NG tube, it was in our first 24hours of having a tubie.

We knew it was what was best for her. We had spent 3 longs months trying to get food in her and had just spent 8 days in the hospital failing to meet her nutrition goals. We didn't know the road ahead of us. We had a young attending who just kept saying the tube would be for two weeks at most, infact I don't think the attending wanted to place the tube, but the GI on call made the choice (he talked with me first, and let me ask questions and discuss options). I knew in my heart that it would be more then 2 weeks. I knew whatever was going on would not be solved in two weeks. I kept thinking that hopefully by a year she would be tube free, and then at 7mo when we put her GJ in I thought, maybe by kindergarten and now she is 4 and honestly she will probably have the tube forever, and thats ok.

I will be honest. The past month has been hard. Between Jilli having croup, the 8 days at RMH/CHW and then last week Lydia decided to throw us all in another spiral when her stomach acid started to have a strange smell. It smells almost like a harsh chemical that someone has tried to make smell better by adding perfume. Its a strange smell and a smell no one on her medical team has interacted with before. Its been lots of messages and phone calls. The thought right now is a fungal infection but the problem is the meds for that interact with other meds so we are trying to figure out better ways to treat it. Then there is Jilli's wheelchair. They were supposed to bring us a trial one because we have to do a two week trial before insurance will approve it but they still have not brought the trial chair so I am trying to figure out what is going on with that. I was really hoping we would have the for zoo class this weekend.

But even with the frustrations and the hard things (just got a message that insurance denied the dysautonomia testing that we did a couple of weeks ago...) there are still many things to be thankful for.

I am thankful for the doctors who stepped in and helped Jillian and thankful for the doctors who stepped in and helped Lydia.
I am thankful for the friends I have that listen to me when I am upset and help to be a sounding block for me.
I am thankful for the family that we have the sticks by and helps us when we need it.
I am thankful that Brent and I are in this together. That we are a team.
I am thankful for all the therapists the girls have had and will continue to have that help them to learn how to use the many skills they have (Lydia started a makeshift crawl this week. She has only done it twice but she is working so hard)
I am thankful for my new dentist as I had my first teeth cleaning and tooth work done with her this week and she is amazing!
I am thankful for a new to us van that helps us to reliably get to and from all of the places we need to go.
I am thankful that God has us through it all
I am thankful for our house to live in, even on weeks like this when it is a mess
I am thankful for the insurance we do have
I am thankful for a church family that loves us
I am thankful for Ronald McDonald House and all they do for us
I am thankful for a sweet friend who sent us a box this week with books for the girls and coffee!
I am thankful for the ability to blog and express my feelings
I am thankful for comfy cloths because some days comfy clothes are good for the heart
I am thankful that the pizza place had half price pizza last night and we got enough for a couple meals because I am worn tonight and that makes life easier
I am thankful they Disney podcasts I watch because they make me happy
I am thankful for diapers because as I type I can hear Jillian is pooping (Lydia is on strike from pooping, to the point I am starting to get worried, she pooped last on Monday!)
I am thankful for feeding tubes because it makes it so my kids can safely get the food they need
I am thankful for oxygen
I am thankful for power because we were without it for a while yesterday with the wind storms
I am thankful for the readers of this blog
I am thankful for so many things

There is always something to be thankful for. Even in long stretches.

Thankful....