Tuesday, April 7, 2015

Juliana update!

Just fillin you all in with where we are with Jules. (As always thank you to everyone for asking, sending cards, prayers, etc you are all amazing!)

Her long awaited appointment at Stanford is NEXT Friday the 17th! We have waited 3.5 months for this one! It going to be a long day though. We are very very thankful they will be able to do multiple tests under one sedation -- which is so nice since this is already her 6th time being sedated and every time I hate it. They will do a brain and spine MRI, then wheel her down the hall and do a nerve conduction test and some kind of muscle test (are you impressed with my medical verbiage?) and then a blood draw to check for a metabolic disorder.

One of the first BIG prayer requests we ask for is that she would stay healthy. If she has even a little runny nose or cough they won't do the sedation.....and we would lose that appointment and probably not get one for another month or longer again! SO please pray she stays healthy! We are pretty much staying home all next week :( I may go crazy since I hate being home and away from people for more than a day lol but it's worth it. I can't wait another 3 months for this appointment! 

We are as usual not even sure what we want these tests to show. Normal results are good but give us no answers and the mystery continues. So we do want them to find the answer we just want it to be fixable! And then for the treatment to work and her hiccups to stop! So it's tricky! We are both feeling like the nerve test will be very telling since this seems to all be related to some kind of nerve issue.

In the meantime she is still on her diet (no soy, wheat/gluten, eggs, diary, nuts or seafood) and GI medicine and she is also on an anti-seizure medicine 3 times a day to try and stop the hiccups. No luck there BUT they have gone longer stretches between ! 

Along the way we are so grateful that she is happy, growing, and the hiccups and spasms have been manageable (but still incredibly frustrating and hard to watch when they go all night and day). 

We are so thankful for you all that have come around us and prayed for her! Please keep it up! 

It's hard not to let my mind go to places like "oh they might find the answer and FIX it all and this will be behind us!" because I don't think that's really a reality. But it's a nice dream lol! She is a gift and we know God has her in his complete care........really. 

Thank you!!! 

P.S. If you happen to see us next week running and errand or if you want to come by please make sure your kids are healthy, hate to be that person! But this week it's important!!!!  

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