Brown and Pink Polka Dots : Jillian met part of the Hobsons

My parents always said it takes a village to raise a child. While I had my own little village of people when I was growing up the really that really shaped who I am today.
One of those families was the Hobsons. They lived down the block from us and went to our church. I started baby sitting for them when I was 11 and continued to do so until they moved to Indiana when I was in high school. They are a part of my family. I remember when the youngest, Howard, was born. I remember them taking me in and caring for my brother and I after my mom had lung surgery. I remember them talking to me about God and boys and life. They were at my wedding (Howard and Bethany were in it). I have called Bethany my little sister for a long time.
I had not seen them since I was only a few months pregnant with Jillian. Every time they looked at coming up either one of them got sick or Jillian went into the hospital. I missed them a lot!
I was so lucky that they came to visit on Sunday night. This trip up was missing a few members of the family but it was good to see Karla, Bethany and Howard.
We asked them were they wanted to eat and to no surprise they said Wing Stop. So we headed to Wingstop for dinner. It felt like home. They are some of those people that you can go so long without seeing and it still be like no time has passed.
The kids were supper excited to see Jillian and she loved seeing them. At one point Jillian wanted Bethany and not me. I love when you can tell she just feels loved!
So without further delay... here are some pics:

We eat... Jilli tips her head back to swallow reflux :)

Jillian got spoiled!

She was kinda a wiggle worm for Karla

Sitting on the beautiful blanket they made her!

She got a new piggy bank... and bribed coins from grandpa

This picture makes my heart smile!

Me and my sister!

A few other notes about the past few days:

I tried to schedule Jillian a follow up with GI after her second PH probe. They told me I had to talk to the nurse. The nurse said that they were looking at adding additional tests to our hospital stay and that there were a lot of emails going around about Jillian. They said the test dates might have to change to get done the news things they were looking to add. I got an email today about a test that was added on that Friday, so I am hoepful that they were able to figure out how to get everything scheduled in the time that we are already planning to be at the hospital. Please be in prayer for these test results. As strange as this sounds we are hoping for them to turn out the same as a month ago. That will show the doctors that she really does need help and that we need to work on figuring out what the root cause is. I feel like the one doctor (not her main GI doctor) is still dismissing this as a little bit of reflux... this is not just a little bit of reflux and we need to be able to clearly see the picture to be able to make choices to do the best thing for her.
Genetics called Monday while I was at work to schedule her appointment. They called at 12:50pm and said that the secretary would only be in until 1 and would not be returning until Thursday. Hopefully Thursday we can get something scheduled.
We got some interesting mail Saturday. It was the records from her last inpatient tests with a handwritten stick note on them. The whole thing was kinda interesting because we have never gotten the actually doctor copy of test results before, it has always been the dumbed down parent handout. It was interesting to read the actual results for myself and what the doctor had written. Sadly it made me question the dr even more. I really want to talk to her ped about these results or someone with medical training that was not involved in the test. I want to bounce some ideas. Sadly though her ped is out of the office this week.
Jillian is not currently getting her night time dose of acid reflux meds because we are weening her off for the test. We are already seeing classic Jillian. A lot more reflux behavior. Her absent seizure like events are back and today she vomited in the middle of the day out of no where not having eaten anything. To me, none of that should be normal...
A big thanks to my parents and Dan for helping me out for the past few days. Brent has been gone on business and they all helped out a lot. Brent left last Thursday morning, came home for a few hours on Sunday (so he could do lights for church and see Hobsons) and then headed back out until tonight. I am so grateful for the extra help!
Over the past few days we have been able to space out her nebs more and more. She is down to 3 a day! From a little less then every 4 hours, that is a big step! I think whatever caused that breathing craziness is finally leaving!
Side note not about Jillian... remember when my windshield shattered a few months back... well today the black stuff around the windshield started to come off as I was driving down the highway. Now I need to figure out a time to get that fixed... oh well, what is life without a few balls out of left field?