More and More it just keeps going

I have been so swamped with everything lately that I haven't had a chance to update about the going ons of Kenz.  Where do I even begin?!!!  The positive side is that she had an amazing July.  Stomach pain was low, and she was over all feeling better.  Then wham!!!!!  August hit and a flare hit her again.  We saw a new doctor in Seattle to see if they had a different recommendation than the doctor here in Portland that in June said Kenzee was a miracle and she would be totally fine since she had the NJ tube.  We knew that wasn't the case. 

We met with the Doctor at Seattle Children's hospital.  Wow she is was amazing.  She understood what we have been through, the ups and downs and the whole process.  She went over Kenzee's years of gastrointestinal doctors notes and reports and confirmed the diagnosis of gastroparesis.  She agreed that Kenzee needs to be followed closely and regularly.  We felt really comfortable with her and can't wait to get back and see her again.

Since that appointment there has been more and more nausea and vomiting spells.  This just tells us she is in a bigger flare and it is lasting longer than we want.  It seems she is coming out of the flare now.  She has put on four pounds in the last few weeks with some tweaks to the medicine by the doctor over the phone while we were waiting for insurance to approve more visits.  This coming Friday we go see the doctor in Seattle again.

The super bad and frustrating news.  After the initial appointment with the doctor in Seattle we requested more appointments for follow up visits.  Because the kids are on Oregon State Medicaid they denied the request.  We appealed that decision with letters of medical necessity from the GI doctor in Seattle.  Last week the insurance denied our appeal.   We are super upset and frustrated because we feel we can get the level of care she needs from Seattle's hospital and there hasn't been a hospital locally that can provide it.  I have called every peds GI office to see if they have a specialist locally they don't.  I have called adult GI offices to ask for recommendations and they have none in Oregon.  This is something we need to do and she needs.  So as of this moment we are cash paying to see the Seattle doctors.  We will be contacting an attorney and filing another appeal to have a hearing at this point. 

Since this has been announced that we are in this situation, there has been an overwhelming outpouring of love and support from our "village."  Joe and I have always said it takes more than the two of us to raise these kiddos and it takes a village.  Well our village has showed up in full support.  We have a GoFund Me campaign going right now to offset these costs.  There will be fundraisers along the way.  We are trying to fight the insurance and then also trying to figure out if we can afford to put her on Joe's insurance.  It is a big huge mess!!!! It's exhausting and tiring.  She is also going through genetic testing to see if there is an umbrella diagnosis that encompasses all of everything she is and has gone through.  She is a trooper and such a strong little girl!!!

Please keep us in your prayers and thoughts as we go forward!!!