Re: JinMei's team report

June 30, 2011

I think I would ask for a second opinion, except that may not be practical for you. We have never been able to go more than three months so far without seeing the ent, and you would think she would still need a second look with extensive cholesteatoma still being found.

I will say, though, that Chloe also had it growing down her eustachian tube this time, and they implied that the CWD she just had should take care of that without planning a bigger surgery at this point.

It is hard because she has the other issues, but they are really all related. The only other child I know who had his care put on hold like that is an extremely handicapped little guy who has such huge problems that ctoma is the least of his worries. They treat him with regular cleanings to suction out growth. He is in the position that more surgery would likely kill him.

Did they say why they felt she had been through too much? Kids are pretty amazing and resilient, but has she expressed negative effects from all her surgery? Chloe has had a ton of surgery, but we've always been told that it is imperative to keep on until it is all gone and then to be vigilant to keep with the regular ent visits.

Hope things settle down for you soon and that you find a plan you can be comfortable with. On Thu, Jun 30, 2011 at 11:37 AM, dkdeboer <Donna_is@...> wrote:

We have finally heard from JinMei's team & I don't know what to think. They have decided she has been through too much & to stop everything for an extended period of time if possible. They were considering a Radical Mastoidectomy as they discovered erosion into the eustacian tube during a Canal Wall Down. They were also considering surgeries & other interventions dealing with Cleft Palate issues. The plan is to now have her see an ENT every 6 months & that's it. I don't know what to think. The erosion has me freaked out. The cholesteatomas are usually discovered during surgeries. Perhaps I'm just too used to all this intervention & it has me freaked out to be let loose? Since we adopted her less then 4 years ago, she has had 10 ear surgeries plus 9 more for all her other craniofacial issues.

Donna DeBoer

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June 30, 2011

I think they felt 19 surgeries in 4 years weren't helping her. And after 2

Canal Wall Down surgeries, if they just monitor it, that might be better. No

reconstruction. Also since we will be seeing an Alaska ENT once a year & then

Seattle Children's ENT once a year, someone will be seeing her every 6 months.

I KNOW we will have her see someone MUCH more often than that. The Alaska ENT

is very good but he says this is beyond his scope of expertise.

BTW, her Alaska ENT was featured on the travel channel cause he was attacked by

a grizzley bear! Gotta love it.

Donna DeBoer

>

> > We have finally heard from JinMei's team & I don't know what to think.

> > They have decided she has been through too much & to stop everything for an

> > extended period of time if possible. They were considering a Radical

> > Mastoidectomy as they discovered erosion into the eustacian tube during a

> > Canal Wall Down. They were also considering surgeries & other interventions

> > dealing with Cleft Palate issues. The plan is to now have her see an ENT

> > every 6 months & that's it. I don't know what to think. The erosion has me

> > freaked out. The cholesteatomas are usually discovered during surgeries.

> > Perhaps I'm just too used to all this intervention & it has me freaked out

> > to be let loose? Since we adopted her less then 4 years ago, she has had 10

> > ear surgeries plus 9 more for all her other craniofacial issues.

> > Donna DeBoer

> >

> > ------------------------------------

> >

July 1, 2011

I know medicine in some parts of Alaska is pretty fun. My friend, June is working as a nurse near Willow and the pay is way better than Boston! Our dr tries to get her to six month visits, but something always comes up. The last time he suggested it, I just looked at him and said, " Really? " and he said, " OK, three months. "

Hopefully, it will just be very obvious if JinMei needs more work. It is always possible that they were able to get all this last time. My best friend from college had a baby last year with cleft palate, and I told her to keep an eye on him for signs of ETD and if anyone suggests tubes, just say yes. I have seen reports of a relationship between the palate issues and ear problems. He is doing really well after only two surgeries so far.

On Thu, Jun 30, 2011 at 11:24 PM, Donna <Donna_is@...> wrote:

I think they felt 19 surgeries in 4 years weren't helping her. And after 2 Canal Wall Down surgeries, if they just monitor it, that might be better. No reconstruction. Also since we will be seeing an Alaska ENT once a year & then Seattle Children's ENT once a year, someone will be seeing her every 6 months. I KNOW we will have her see someone MUCH more often than that. The Alaska ENT is very good but he says this is beyond his scope of expertise.

BTW, her Alaska ENT was featured on the travel channel cause he was attacked by a grizzley bear! Gotta love it.