Hi Everyone,
We hope that this post finds you all doing very well. How can the summer almost be over already? It went by so quickly that it doesn't even feel like we had a summer. We have been busy since the last post (almost 3 months ago).
The results from Faith's MRI were not what we had hoped for. Her cyst continues to grow. However, she is still having no symptoms. We are so thankful for that. Her Neurosurgeon (NS) asked us to watch her closely for symptoms. She has a follow up MRI schedule for October 11. Surgery is inevitable but it is just a matter when. Her NS feels that we have a greater chance of success this (the 3rd) time, the longer we can wait. It is hard and scary but we have become used to worrying that she may start having symptoms.
We have been taking Faith to PT at Mary Free Bed (MFB) for the summer. We decided to do this because she does not get regular PT through Early On during the summer. Early On is a school system based program so they only come once a month during the summer instead of once a week. Faith has made great progress with her PT at MFB. We love her therapist and she is so good with her.
Faith still has to wear her eye patch for an hour every day. We go see Dr. Droste in mid-September and hope to be done with it. Her right eye still wanders but we are hopeful this will be resolved sooner than later.
We still take Faith to see lots of specialists but the time between visits is getting longer. It is nice not to feel like we are taking her to a different doctor every week. Things will definitely be busier for us when school starts because her Early On visits will resume. We are looking forward to her getting all the therapy so it is well worth being busy.
We are struggling to get her to sleep through the night. Lately, we are up for several hours most nights. There are a multiple of things that wake her. Sometimes it is her teeth, sometimes she is soaked from being fed by her feeding tube, sometimes her colostomy bag comes off, sometimes her feeding tube has an error, and sometimes we have no idea what the problem is. She is almost always a very happy girl through all of this and we couldn't be happier about that.
Faith continues to learn new things and progress forward. We are teaching her sign language and her favorite is "Please." She is walking along furniture and loves to get into drawers and cupboards. She loves to be outside and to be read to.
Please continue to keep Faith in your thoughts and prayers. She is truly defying the odds! Two year ago on 8/31/11, the doctors told us that Faith would never survive. She is a fighter and we are truly blessed to have her in our lives.
With Love,
The Sunde's
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