Very overdue...

So yes, it's been awhile my old friend. I know with you though I can leave you for awhile, have time to figure things out, and return and you won't judge; you won't hate.

Honestly I have come here, to this page many times and started this very entry and walked away from it. For the first time it all became to much to look at. To much pain, to much uncertainty, and mostly just to much. Today I will hit the publish button and I will stop hiding from the world.

First and foremost things with Alana are at an impasse of sorts. I am going to give you a bridged version of how things have been going as it will suffice. Since December she has had "pneumonia" every month. Her fevers have been out of control and shes had a significant turn in regards to her muscle strength. She falls...a lot. Her gait has not returned to her normal-learning-to-walk-been-walking-along-time pace. When she runs her feet and legs are spaced out and she's wobbly. She has taken to falling out of the blue and looks confused about it stating that her leg just didn't work right suddenly.

It's to the point that PT & OT are doing formal evaluations again, even though they were done not 6 months ago, to see where she's at now.


Her GI system has not been playing nice well either and we've already gone through 2 Mic-Key tubes due to balloons breaking. The feeds are still hit and miss and mostly miss. She is uncomfortable and cries a lot when we do them faster than 60 mL/hour. There has been no weight gain. She is still dependent on 3 med's to do what she needs to do and it's not easy on her stomach either way.

Due to the frequent issues with her lungs now she's been at 2 liters since December, up to 3 for PT & OT in order to maintain above 90. When she goes to school for a few hours it never fails that I get a call from the nurse telling me that she's at 89-90 and they had to have her rest and do some deep breathing for awhile in order to get her to 95. What should they do?


Things here have changed dramatically and anyone who tells you their other children and their marriage are "fine" and "have no issues" with having a chronically ill sibling/child are full of shyt. Shaylin resents everything about Alana's illness. Noelani tries to fix everything about her baby sister and just wants to hold her and make it better. Alana herself today asked me why I pick on her and do mean things to her like giving her a 2nd belly button and not making her lungs not hurt. I am sorry is all I can say to her. I am so sorry baby.



No matter how long I put off this post there's nothing I can do to make this a happy or easy to read. It's not easy for me to type, it's not easy for me to think about. There's so many things that are floating in my mind and while I've let you all into our family and our struggles with Alana, Shaylin and Noelani there are somethings that even I cannot wrap my head around and are going to have to remain unsaid for the moment. In time they will come out, trust me.

Before I go 2 things:

1. This is not a pity post. I don't want pity. My family does not need pity. Sometimes things that we say and feel are not meant to be taken as woes me but more along the lines of 'they have to come out of my head so I can move past them'.

2. We are headed back to Cincinnati on Sunday. My mom is coming with Alana and I and we will be there about 8 days if things go smoothly. I will update soon on all that's going to be done and who we are seeing. It has been a pushed trip, about a month in the making, due to her change in status.

Smile. We are at the end for now.