Little Larissa - please read

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Is it time for some more masks or any other supplies? She looks so great in those last pics!! Hope all is well with you Brazilian and of course Laryssa, her family, and her doctors.

echo wrote:Bump

Is it time for some more masks or any other supplies? She looks so great in those last pics!! Hope all is well with you Brazilian and of course Laryssa, her family, and her doctors.

Hi, all!!!!

Here are recent pictures of Laryssa, and she is turning 5 next 26th of June. She is healthy, lively and curious, very talkative and strong of will. Photos were taken by her mother, using a cell phone.





She lives now in her home town, a small town quite far away from Belo Horizonte, called Manhuaçu (pronounced somewhat like "Mah- in'you - ah - sue"), which is an indigenous expression meaning 'Big Rain'. It possesses around 80.000 inhabitants, and for the curious ones, there's some information available at http://pt.wikipedia.org/wiki/Manhua%C3%A7u (in Portuguese, use Google translator) or a less updated page in English at http://en.wikipedia.org/wiki/Manhua%C3%A7u

Once a month, the city ambulance takes Laryssa and her mother back to Belo Horizonte, where she is thoroughly checked by Ventilar's team, at the same hospital she was when we first met.

Her mother recently asked for some replacement cushions, she sleeps on her stomach and likely bytes the cushion during the sleep, so it is very damaged. She uses a FlexFit 406 Petite Nasal Mask.

I have just arrived in Las Vegas and will stay the whole week (will leave on Sunday 13th). If anybody wants me to send anything to her, I will be more than glad to do so. My direction in Vegas is:

NELSON BAUMGRATZ (INFOCOMM) ROOM #235
Marriot Courtyard Convention Center
3275 Paradise Road
Las Vegas, NV 89109
Phone: (702) 791-3600

Regards to all!!!!

Nelson (brazilian)

Nelson!
How woderful to hear from you again. And how wonderful to hear Laryssa is doing well.

Right now I can't see the pictures -- not even if I put the link itself on the address line.

Hard to believe Laryssa is almost 5 now. And heartwarming to hear she is being well taken care of by her mother, and the hospital kept in the loop.

I hope our friend Dr. Cacau is doing well too!

All the best
O.

Edited to add
P.S. -- and I can't even the pictures I could see last time -- how is it for you, dsm?

Nelson

Many thanks for keeping us posted. I have added the pics to my server.
Pls say a big hi to Claudia. Hope all is going well for her and her family
and for you and yours. It is great to see our little girl growing up so well !.

Ozij

As before I turned off my ZoneAlarm security & the images then appeared.
I have attached one below plus turned them into a slide show on my server.

Cheers Doug


http://www.internetage.ws/laryssa/june- ... index.html

For our cpaptalk newcomers, have added these 3 set of pics showing Laryssa 2 years ago (with Nelson) then one year ago (with Claudia alias Dra Cacau (Eng trans: Dr Candy)) & then in 2008 when it all began while she was in hospital where she had been most of her life.

DSM

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Pics from the past showing Nelson with a younger Laryssa just after she left hospital at age 3+, Plus Claudia also with Laryssa on a visit when she was about 4. (Claudia is a special social worker who attends hospitals etc: where young children like Laryssa are staying. Claudia dresses up as a special clown to entertain and soothe the very young children. She is known by the name Dra Cacau (Nelson explained earlier that CaCau (CoCo) is an affectionate nickname for girls name Claudia). Claudia can be seen as Dra Cacau in the last pic.



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Some original images going back to June 2008








#2 Corrected meaning of CaCau as used for Claudia when she dresses up as Dra Cacau

dsm wrote:For our cpaptalk newcomers, have added these 3 set of pics showing Laryssa 2 years ago (with Nelson) then one year ago (with Claudia alias Dra Cacau (Eng trans: Dr Candy)) & then in 2008 when it all began while she was in hospital where she had been most of her life.

DSM

Great pictures DSM, and a heartwarming story.

Thanks for posting them.

cheers

Mars

I've done nothing, and can see all pics now.
A pleasure.
O.

Thanks for bumping this up--I'm relatively new, so it was the first time I saw it and I skimmed all 37 pages.

A heartwarming story and confirmation that this is a great group of people we have here.

Nelson,

This is a heart-warming story.

I sent you a headgear with cushion, and a replacement cushion.

I did this on cpap.com, and unfortunately, despite the fact that I entered YOUR name and room number for the shipping address (separate from my information under billing), somehow the first line of the address is MY name, and yours is in the 2nd line. I'm concerned that hotel employees will see my name on the first line with no room number, and look no further. I just got an email from Johnny at cpap.com and he is looking into it, so perhaps he will be able to get the name changed. Just in case, I'm PMing you my name. Perhaps you could tell them at the front desk to be on the look-out for a package addressed to me.

There is a practice of giving someone a dollar before they go on a trip, to put in a donation box when they arrive at their destination. The thinking is that while someone is on their way to do a good deed, they are protected. Now you are a messenger of a good deed and will be guarded on your way.

Sleeping Ugly

brazilian wrote: I have just arrived in Las Vegas and will stay the whole week (will leave on Sunday 13th). If anybody wants me to send anything to her, I will be more than glad to do so. My direction in Vegas is:

NELSON BAUMGRATZ (INFOCOMM) ROOM #235
Marriot Courtyard Convention Center
3275 Paradise Road
Las Vegas, NV 89109
Phone: (702) 791-3600

Regards to all!!!!

Nelson (brazilian)

SleepingUgly wrote:Nelson,

This is a heart-warming story.

I sent you a 406 headgear with cushion, as well as a replacement cushion.

Unfortunately, I did this on cpap.com, and despite the fact that I entered YOUR name and room number for the shipping address (separate from my information under billing), somehow the first line of the address is MY name, and yours is in the 2nd line. I'm concerned that hotel employees will see my name on the first line with no room number, and look no further. I just got an email from Johnny at cpap.com and he is looking into it, so perhaps he will be able to get the name changed. Just in case, I'm PMing you my name. Perhaps you could tell them at the front desk to be on the look-out for a package addressed to me.

There is a practice of giving someone a dollar before they go on a trip, to put in a donation box when they arrive at their destination. The thinking is that while someone is on their way to do a good deed, they are protected. Now you are a messenger of a good deed and will be guarded on your way.

Sleeping Ugly

brazilian wrote: I have just arrived in Las Vegas and will stay the whole week (will leave on Sunday 13th). If anybody wants me to send anything to her, I will be more than glad to do so. My direction in Vegas is:

NELSON BAUMGRATZ (INFOCOMM) ROOM #235
Marriot Courtyard Convention Center
3275 Paradise Road
Las Vegas, NV 89109
Phone: (702) 791-3600

Regards to all!!!!

Nelson (brazilian)

SU

Bless you !

DSM

Nelson, the package should arrive today. Would you please let me know that you received it? Still concerned the hotel won't look further than my name... Thanks!

SU:

while I was just reading your message here, the front desk called me at the phone to tell me a package from CPAP has just arrived! I going down there to fetch it!!!!

Bless you!

Nelson

This is the first time I have seen this thread. I read the story with tears in my eyes. Brazilian you are such a nice caring man to want to help this lovely child. Banned your generous gift to a child far away is absolutely amazing. God Bless you both. I read enough to know that others have helped with supplies for the child. How wonderful that the people of this community could come together to aid someone who is desperate for help. Looking at the pictures of this beautiful child and seeing how she has thrived since getting the help she needs just makes my day. What a great group this forum is. Such wonderful, warm and generous people.

Laura

brazilian wrote:SU:

while I was just reading your message here, the front desk called me at the phone to tell me a package from CPAP has just arrived! I going down there to fetch it!!!!

Bless you!

Nelson

Great!! I'm glad it made it.

Hi, everybody!!!!

I have some new pics from Laryssa. Quality of the photos is not good, taken with a cell phone, but I can tell you that Laryssa is now 5 1/2 yo, healty and vivid as always. She is wonderfully lively, clever and talkative. Wasn't for her Central Sleep Apnea, no one could tell anything about her health.

She just begun pre-school this year, and is very excited with this new phase of her life. As I reported last year, she lives now in the interior, in Manhuaçu city, (well, President Obama could pronounce 'Cidade Maravilhosa' superbly, but I doubt he could do the same with this town's name... ). Her mother has shown great maturity, and takes excellent care for her, despite their very humble condition. She has no computer, but sometimes accesses Internet in a 'LAN House', and tells me about Laryssa through MSN.

Regularly, professionals from State Health Service check her conditions, and every two months she is brought here to Belo Horizonte, for a thorough examination at CGP (Pediatric General Center), where she spent her first years before receiving her BiPAP.


Laryssa (R) and her mother, Graziele (L)


Laryssa


Laryssa (L) and a friend


Laryssa having fun...


Laryssa having fun...


Laryssa (R) and a friend


Last week her BiPAP alarm started sounding, and it was due a huge leak on her mask. She was brought to Belo Horizonte, examined, slept one night at CGP (SpO2> 96%, 100% of the time), and everything is perfect with her, except the mask is worn, so it is now time to replace it. As she sleeps on her stomach, she sometimes bites the cushion, and it gets badly damaged pretty sooner than normal.

She is using ComfortGel Petite, and it would be wonderful if someone could be able to contribute with a new mask, or even with replacement cushions. I have a friend going to the US, staying near Houston from April 1st to 6th, and he prompted to bring her anything she needed.

I send my warm regards to all in this forum, and, as Dra. Cacau used to say, a "blue kiss on the tip of the nose" to all of you that in some manner became our little princess' angels...!

Nelson