The Jilli update (like my creative title)

This is another blog post with lots of info and updates. I will try to keep it well organized :)

1. Jillian had her 24hr pulse ox study starting at 3:30 on Wednesday and ended around noon on Thursday (yes I do get that it was not actually 24hr... close enough) Within the first hour I told Brent that the sound of the alarm was going to make me batty! We are use to beeping at our house... her feeding pump has a phd in beeping. But when it is a new beep sound it feels so much louder then the beeps you are use to. They set the pulse ox to alarm any time it went below 90 for the o2 levels. She had direct correspondence to when she was up walking and playing that it would drop to the low 90s and down into the 80s. She did do an amazing job at keeping it on. She was annoyed by it at first but within 5 minutes she was fine and went about her way. By the second day she was even trying to carry the pulse ox machine around herself. She was mad when I took the pulse ox off of her when the study was over. Silly girl! Now we wait to hear from the dr. They told us we would hear from them within 48 hours... but I don't know when the 48 hour timeline started (when the test was over, when they picked up the pulse ox, when the company that ran the test got the information to the doctor's office, when the doctor looked at the results... those all could have large gaps of time between them) I am hoping someone calls soon and that the dr office has received the test results and has a plan. Obviously she dropped too low too many times so we need to do something. We tested her pulse ox again today in therapy and once again it did the same thing. We have 4 weeks of therapy results and a day long study that shows something is not right.
2. Jillian had her echo on Thursday afternoon (hence why her other test was a little shorter then 24 hours) She was such a big girl for it. She laid on the bed, watched TV and did not make a sound or mess with the test at all. There was one odd thing with the test... they were struggling to see her heart when they went up from the bottom of her rib cage by her stomach. The tech tried and then a doctor came in and tried and they were not able to get the pictures they were trying to from that angle. The dr asked about her stomach surgeries and if there might be scar tissue up there from them. I said that all of her stomach surgeries were at the bottom of her stomach (feeding tube placement) and that I did not think there should be anything way up there causing a problem. The rest of the test when fine and they said that everything else looked good. Our follow up schedule with them will be based upon genetic testing results.
3. Jillian's ped called me this morning to check in. I was so grateful that she did because I had some questions for her and she had some questions for me. I asked her about the echo and the problem that they ran into. She said that she would like a CT done of Jillian's abdomen to make sure everything is in the correct place. This is not the only time there has been some questions about this area on Jillian. They first tried to place her feeding tube laproscopically however that did not work and they said that it might have been because her stomach was positioned high. Now with two different tests coming back with odd results in this area we need to look into it a little more. Jillian's ped asked me to contact GI to see if they would help coordinate doing a abdomen CT at the same time as her lung CT in July.
4. I contacted GI to see if they could help with the the CT. They said they would and they seamed interested as well. They said that if her stomach is not positioned properly that could be adding her her digestion issues. I am grateful for their help in this. They also said that they would like us to see one of the speech people at Children's again that works on swallowing/feeding issues to look into the aspiration stuff again before we were to do another gastric emptying study so we can all work together to minimize Jillian's aspiration risk in testing. 
5. Today we went to therapy and Jillian has a new PT. Last week we had both her old PT and the new PT and this week was just the new PT. I really like her and she was really good with Jillian. She also had Jillian's orthotics. Jillian wears the smallest size the company makes (her feet are really small, she wears a toddler size 4)! I am hopeful the orthotics help with Jillian's walking (she alternates toe walking and walking on the insides of her feet)
6. On Thursday the Children's financial department called (we were at Children's when they called and their voice mail scarred me because it just said it was the financial department calling about our account...) They were calling to let us know that Jillian's main insurance approved her genetic testing and her secondary state insurance denied it claiming it is not medically necessary. They said that with the primary approving it that we should do it now because we have the best chance of it being covered and we have already hit her deductible and out of pocket max for the year... they asked if from a financial standpoint if we were ok with doing it now... I said yes, lets get it going. They were going to let genetics know that the financial is ready to go. I am not sure if genetics is going to call me before they run the test or if my phone conversation with financial will start the test, either way hopefully it is getting closer to starting! Yeah!

Yup, thats a summery of the past few days. Thank you for all of the prayers, they have really been felt in this all and I have been encouraged greatly by some amazing people the past few days and I am so grateful! Please continue to pray that pulmonology comes up with a good plan for Jillian and that is communicated with us quickly and that we continue to move with the genetic testing and that it points us to a cause.

She had danced a little bit

She was interested in the pulse ox machine.

Playtime should not cause this...

Jillian pushing her pulse ox at school

during the echo

Therapy wore her out! She is still sleeping in her chair over an hour later