Re: Apologies and Thank You's From Sionnan's Mom

[Guest guest]

Barbara & girls,

Boy am I glad to hear from you! We have been thinking of you often. I

can't recommend anyone in your area, but I can recommend Dr. at Duke.

If nothing else comes your way I would at least call them and/or send or

call Dr. Enterline(pediatric neuroradiologist) at Duke also. Whitney has

done so well since her surgery on the 21 of June. If transportation is an

issue, you can check with Bob Jacks at Continental CareForce, or

Cherry at Southwest Airlines. They both have helped us since Dr. was

1100 miles away from us! We couldn't have done it without them.

AngelFlight was also there for us in case the airlines didn't come through.

I have dealt with alot of wonderful people during this journey! We also

stayed at Mc house in Durham run by Hill. They were

very helpful and provided transportation to and from appointments and to the

hospital. Please keep us posted. Good luck and God Bless you all. (Keep

your chin up!) ;o) ************Nanci

Apologies and Thank You's From Sionnan's Mom

> Hi,

>

> I am writing first to apologize for taking so long to thank everyone for

their kindess and interest in Sionnan during her latest surgery at U.C.L.A.

Medical Center.

> It was an extremely stressful time for us, but Dori kept us informed on

how everyone was so concerned for Sionnan, and all the people who emailed

her to see how she was progressing.

> It made such a difference to me to know that so many people cared. I feel

that everybody's prayers made all the difference in Sionnan's success.

> Initially, Sionnan did very well. Dr. Lazareff is an incredible surgeon

and a very kind man. He saved Sionnan's life. Apparently, she was in a

very grave situation when we arrived in Los Angeles. I believe Dr. Lazareff

did everything he could to reconstruct her skull. But he did explain that

more work may be necessary in the future for her ACM. Sionnan has been

exhibiting a lot of her prior symptoms the last few weeks, however. We have

had to increase her Morphine, and this is still not controlling her pain.

She's having difficulty standing because of pressure in her head.

> We were told by Dr. Lazareff that we need to find a neurosurgeon in our

area who could continue her care. After looking at the recommendations of

doctors from Wacma members, I noticed two her were close to our area; Dr.

Carl Heilman and Dr. ; both in Boston, Mass. (We live in a

small town in Northeastern Connecticut). If anyone has any information,

good or bad, about either doctor, I would appreciate if they would email me

privately. Also, if anyone knows of any neurosurgeons in the area who they

recommend, I would appreciate hearing that also.

> Again, thank you all very much for all your kind wishes and prayers.

>

> Love,

> Barbara Downey

> (mother of Sionnan Downey)

>

>

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