Post by Googsmom aka Jennifer on Apr 29, 2012 9:49:09 GMT -5
;D Hi everyone!! Long time no post. Bad, bad Uno Mas'er 
I spose i'll do a little update for those who are not aware of the goings on in Brooks world. Most everyone here knows the battle I have had w/ Brooks throat. A six yr battle to find and anwser. Well, we finally have an anwser thx to a special ST I called in. Yep, a ST caught this after tuns of doctors did not! 
Brookster has Achalasia. Just as Leahs daughter Angela has. This is a very rare throat disease. So very rare NO ONE in Oregon will take Brooks case. We have been refered to Seattle Childrens. Just waiting on insurance to approve it. If they deny it, well, i'll be selling everything I own to get her there. The next test they need to do is called an EM procedure and just the little tube/wire thingy they put down her nose/throat is $12,000. Yep, twelve thousand dollars. 
Holy chit! I have joined an FB group about Achalasia. All adults. But that is ok b/c i'm learning ALOT from them. They can tell me things Brookster can't. Quite and eye opener, for sure. My poor kid. They all just can't believe a six yr old has to deal with this. Her nurse and I are convinced that Brook just thinks this is "normal" and has learned to deal w/ it. Breaks my heart!!
In other news... Brooks b-day was Friday. The big SIX. My goodness!! I haven't got her 6 yr old pics yet. When I do i'll be sure to share
I spose i'll do a little update for those who are not aware of the goings on in Brooks world. Most everyone here knows the battle I have had w/ Brooks throat. A six yr battle to find and anwser. Well, we finally have an anwser thx to a special ST I called in. Yep, a ST caught this after tuns of doctors did not! 
Brookster has Achalasia. Just as Leahs daughter Angela has. This is a very rare throat disease. So very rare NO ONE in Oregon will take Brooks case. We have been refered to Seattle Childrens. Just waiting on insurance to approve it. If they deny it, well, i'll be selling everything I own to get her there. The next test they need to do is called an EM procedure and just the little tube/wire thingy they put down her nose/throat is $12,000. Yep, twelve thousand dollars. 
Holy chit! I have joined an FB group about Achalasia. All adults. But that is ok b/c i'm learning ALOT from them. They can tell me things Brookster can't. Quite and eye opener, for sure. My poor kid. They all just can't believe a six yr old has to deal with this. Her nurse and I are convinced that Brook just thinks this is "normal" and has learned to deal w/ it. Breaks my heart!!In other news... Brooks b-day was Friday. The big SIX. My goodness!! I haven't got her 6 yr old pics yet. When I do i'll be sure to share
