Re: Dr. Whiteman called me-Darla

[Guest guest]

Glad to hear you have some type of resolution! Lets pray for an uneventful weekend at the Klein home.

FYI -- We're moving next Thu. the 8th. It will probably take me a while to get my head above water but, I will look you up and we'll meet in person sometime soon. Take care of yourself.

Kim - Mom to and Lindsey - (2) Partial Complex I

Dr. Whiteman called me

I feel so much better after the long phone call I received from Dr. Whiteman tonight. He is going to try to help us by writing a protocol for our local doctor to redo on her stationary, so that the local docs, who will recognize her name, will want to keep a good working relationship with her by doing what is written. (Hopefully) He really likes our pediatrician as he has dealt with her for a while with us and other patients.

He feels Asenath and maybe Porrah both probably have floppy bladders so their labs do not reveal how dehydrated they are because of urine retention. Asenath always floods her diapers, 300-400 cc. at night or more, and hardly urinates during the day time. Asenath will see a urologist when we go up to Mayo later this month. (25th-28th) He also wants to further discuss a g-tube for Asenath due to all her problems and will set up a! pediatric surgeon appointment with Dr. Moir (He did Asenath's g-tube and muscle/skin biopsy.) I think we accomplished quite a bit on the phone and I feel more comfortable with our situation, knowing he is on our side and understands what has been happening. He also plans to talk to our pediatrician and our in-house (hospital) doctor if possible. We discussed both girls in depth and at the end he told me to "give the girl a hug from him." He can be so sweet! I am encouraged, yet know I still have to deal with the local docs. Kim, I am fighting for us! We will get the hospital help we need yet! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma.. Zipporrah,(5 mon.) Mito, strokes, sensory issues, feeding/breathing issues...Please contact mito-owner with any problems or questions.

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