Many Steps Back

Many Steps Back

Stephanie’s stay at home was very short lived. She was only home a few weeks and her PICC line broke. She was not actually thriving here with many issues and problems. Without her PICC line we were unable to keep her hydrated and provide essential nutrients for growth. While in hospital; Stephanie got a terrible virus that held her up for a few extra weeks.

She stayed one month in hospital and when she came home she no longer tolerated her GJ tube feeds and is 100% dependent on IV fluids for hydration, nutrition and medications. She is hooked up 24 hours a day at this point and gets several of her meds through her IV. We do hope this is short lived and we can go back to the J tube feeds at some point. The TPN is really not the direction we thought we were going. Stephanie is really not progressing at all; in fact she is many, many steps back. She is at home now but still having bouts of severe pain. She takes many medications to at least help manage her pain. She goes to school two afternoons a week with her nurse but only for a few hours. Her energy level is not great but she manages what she can.

Stephie has lost all bladder and bowel control. She has also gotten very puffy. Her doctors are concerned. We will be seen by Urology, Nephrology and Neurology to se if we can some get to the bottom of all this. They are also hoping to do an MRI very soon.

She is trying to maintain her spunk under all of this change but it is getting harder and harder each day. It is very difficult to watch Stephanie go through all of this. We are doing our best and just living minute by minute right now. Stephanie spends most of her day resting and conserving her to get through a short play session when her sisters get home from school.

Colleen has taken the time to organize the Mat-A-Thon this Saturday (June 16th) a benefit for Stephanie. If you would like the information please go to: http://www.corebasics.com/. It will be a great day filled with a filled with door prizes, excellent Pilates instructions for all levels. Thank each of you who have help, donated, prayed, sent good karma…

Mrs Dube spent much time and energy organizing a Fashion Show in Stephanie’s Name. There was fun had by all. We Thank you all who helped with making this event such a success.

Denise, Adam, Jamie, Paul and Laurielle have made it possible to put together a beautiful Montage of Stephanie last five years. I hope you will all get a chance to see it. Please feel free to contact me for more information about the video. Thank you Mantis Media. I do hope to get the opportunity to Thank each one of you for all of your hard work. I wish you could all have the opportunity to meet Stephanie and just see her spunk and love of life.

Stephanie has and will be in and out of hospital until we can get a handle of what is causing all of this. Our hope right now is to try to get her off or partially off the TPN (IV fluids). We Thank you all so very much for your continued support. Thank you for you calls, emails, meals and help with the children. Feel to Leave a note for Stephanie she can really use some words of encouragement right now. I will keep you all posted.

Be Well
Denise