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Re: Ignacio's Update

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Annie,

I'm glad to hear Ignacio is rounding nicely! Let us know what the next few weeks bring with your discussion around band #2.

Now for the smell : ) Welcome to the club, LOL!! Ok, now seriously. How often are you cleaning and with what? Since the smell is getting really bad ... I would suggest cleaning 2-3 times per day with the strongest alcohol you can get (>90%). This would mean taking 2-3 breaks per day instead of one long break at bath time. What shampoo are you using? I was using 's bedtime bath with Lavender. It was so nice. We're using a milk bath now. It's not as fragrant. I don't remember the brand.

HTH

& na

Ignacio's Update

Hi guys... I know... I haven't been behaving and I have not been posting as much as I would like but the twins are trying to get me off completely from the internet.Well, back to business. Ignacio's last appointment was on the 15th. The traveling is going extremely well; he sleeps during the whole flight and everyone has to do with him. He' always smiling and trying to get peoples' attentions so everyone is very friendly with him and I haven't noticed any stares that I might find uncomfortable. Maybe I just don't notice them...Our last appointment was "sweet & sour". It went very well; the ortho was really impressed with his development since his last appointment (guess he had some growth). The flat side has a little bump that was not there when we started so I guess we are seeing some rounding. Also the front side seems to be improving as well (not as fast though). Now, the "sour" part... First, the ortho told me that, with luck the band might last another month or so. There is not much foam left on the back... she told me that it is still too soon to discuss the possibility of getting a second band, but dh and I feel that Ignacio has still some rounding up to do and, most probably, it will be necessary to get the second band. The most bothering part is that I know Ignacio hasn't had the correction he might have gotten because of the skin rash we had to tackle for the first three weeks of treatment. Also, the ortho told me that Ignacio's correction will not be complete. I expected this since his sutures are downward in his skull. The ortho told me that the only way to get that part of the head to push out was to place something inside his skull to get it out... this would mean surgery and Im totally against it.But, after putting two and two together... we are happy with the results we are getting.On another matter, please we need help. Ignacio's head smells like a really old and used tennis shoe. I mean, my feet don't smell that good but his head wins the contest. Yesterday, the twins where playing and Ignacio had his band off... came near his brither's head and his face was just a Kodak moment... even his eyes got watery. Any ideas on how to get some of the smell out of the band???Annie CastroMom to twins, Ignacio (DOC 12/2/03) & San , PRFor more plagio info

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Thanks for the update on Ignacio. Jenna's band got pretty stinky. I used the Kids loreal fruity shampoo. I would let it stay on her hair for her whole bath and then rinsed it out. It seemed to help some.

I am so glad that the traveling is going well. It does sounds like he has had good growth and correction! Please keep us updated.

Angie and Jenna

Ignacio's Update

Hi guys... I know... I haven't been behaving and I have not been posting as much as I would like but the twins are trying to get me off completely from the internet.Well, back to business. Ignacio's last appointment was on the 15th. The traveling is going extremely well; he sleeps during the whole flight and everyone has to do with him. He' always smiling and trying to get peoples' attentions so everyone is very friendly with him and I haven't noticed any stares that I might find uncomfortable. Maybe I just don't notice them...Our last appointment was "sweet & sour". It went very well; the ortho was really impressed with his development since his last appointment (guess he had some growth). The flat side has a little bump that was not there when we started so I guess we are seeing some rounding. Also the front side seems to be improving as well (not as fast though). Now, the "sour" part... First, the ortho told me that, with luck the band might last another month or so. There is not much foam left on the back... she told me that it is still too soon to discuss the possibility of getting a second band, but dh and I feel that Ignacio has still some rounding up to do and, most probably, it will be necessary to get the second band. The most bothering part is that I know Ignacio hasn't had the correction he might have gotten because of the skin rash we had to tackle for the first three weeks of treatment. Also, the ortho told me that Ignacio's correction will not be complete. I expected this since his sutures are downward in his skull. The ortho told me that the only way to get that part of the head to push out was to place something inside his skull to get it out... this would mean surgery and Im totally against it.But, after putting two and two together... we are happy with the results we are getting.On another matter, please we need help. Ignacio's head smells like a really old and used tennis shoe. I mean, my feet don't smell that good but his head wins the contest. Yesterday, the twins where playing and Ignacio had his band off... came near his brither's head and his face was just a Kodak moment... even his eyes got watery. Any ideas on how to get some of the smell out of the band???Annie CastroMom to twins, Ignacio (DOC 12/2/03) & San , PRFor more plagio info

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Glad to hear that Ignacio is rounding, yeah! That is great that he is traveling so well, I am sure that makes it much easier on you. Sorry to hear that he will need a second band, that is a bummer, but at least he will see additional correction. We never regretted for a second putting him in the next band.

I totally cracked up about the smell. I can just picture that, lol. We never had too many problems in that regard with Trentyn's helmet. How cold is it there? I know scrubbing it really hard with alcohol and putting it under the sun to dry can really help. Good luck, I definitely do not miss the slight smell we had!

Jen- TXTrentyn- 20 mo. DocBand 06/12/03 & 09/17/03DocGrad 01/16/04

Ignacio's Update

Hi guys... I know... I haven't been behaving and I have not been posting as much as I would like but the twins are trying to get me off completely from the internet.Well, back to business. Ignacio's last appointment was on the 15th. The traveling is going extremely well; he sleeps during the whole flight and everyone has to do with him. He' always smiling and trying to get peoples' attentions so everyone is very friendly with him and I haven't noticed any stares that I might find uncomfortable. Maybe I just don't notice them...Our last appointment was "sweet & sour". It went very well; the ortho was really impressed with his development since his last appointment (guess he had some growth). The flat side has a little bump that was not there when we started so I guess we are seeing some rounding. Also the front side seems to be improving as well (not as fast though). Now, the "sour" part... First, the ortho told me that, with luck the band might last another month or so. There is not much foam left on the back... she told me that it is still too soon to discuss the possibility of getting a second band, but dh and I feel that Ignacio has still some rounding up to do and, most probably, it will be necessary to get the second band. The most bothering part is that I know Ignacio hasn't had the correction he might have gotten because of the skin rash we had to tackle for the first three weeks of treatment. Also, the ortho told me that Ignacio's correction will not be complete. I expected this since his sutures are downward in his skull. The ortho told me that the only way to get that part of the head to push out was to place something inside his skull to get it out... this would mean surgery and Im totally against it.But, after putting two and two together... we are happy with the results we are getting.On another matter, please we need help. Ignacio's head smells like a really old and used tennis shoe. I mean, my feet don't smell that good but his head wins the contest. Yesterday, the twins where playing and Ignacio had his band off... came near his brither's head and his face was just a Kodak moment... even his eyes got watery. Any ideas on how to get some of the smell out of the band???Annie CastroMom to twins, Ignacio (DOC 12/2/03) & San , PRFor more plagio info

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Hi Annie---It was so nice finally meeting you in person last week. I am so

glad that you noticed our name on the sign in sheet and came back to meet

us. For some reason, this meant so much to me. I am glad to hear that

Ignacio is making progress in his band. Despite your difficulties in PR

with the medical community, you were able to get Ignacio the help he needs

at a young age and at the right place. Yay for you!!!

I was sorry to hear about the issue regarding Ignacio's sutures. I am still

hopeful that he will get a good degree of rounding in the places he can.

Perhaps this will offset the areas in which the sutures are downward in the

skull. So much of this process is a big question mark, isn't it?

I think the second band will offer him additional correction at his age.

Looking through the before and after pics of the babies that have had two

bands...it seems that the second band can really make a difference in the

total outcome. I only wish that CT was closer to home for you, because I

know the type of sacrifice you are making with the travel.

In regard to the smell, we also had these issues. We did what everyone

recommends. We used the 91% ETOH, shampooed with the L'Oreal fruity stuff

and left it on the head during the bath, and sometimes cleaned the band with

ETOH more frequently. Unfortunately, once the band gets a little " long in

the tooth " I think it is hard to get the smell out. I never tried the sun

thing...perhaps this does help. This is another good thing about the

second band. It is like a whole fresh smelling beginning.

Tell to hang in there with his brother's head.

B.

Mom to B.

STARBand drop out 8/03

DOCBand #1 9/4/03

DOCBand #2 12/18/03

Miami

Perhaps we will meet again at CT. Take care.

B.

Mom to B.

STARBand drop out 8/03

DOCBand #1 9/4/03

DOCBand #2 12/18/03

Miami

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