Little Larissa - please read

An amazing and heartwarming saga that continues to be written every day of that little girl's life.

ozij, that's a beautiful poem. Thanks!

Hello friends, I missed you already.
Today I was with Larissa, she is very well her nights have been very tranquil.
She has appointed some gear (Don't know what this means. O.), hit the physiotherapist, quarreled with the nurse. We had a conversation and I explained to her that she needed a little time to go to the infirmary. June 29 is her birthday , she will be 3 years old. we are planning to make a party, she is very anxious about the party (could also mean eager, waiting for it anxiously O.), I think she does not know what a birthday party is. Today during the visit took I some pictures I will ask my friend Brazilian to post.
A kiss blue. Be with God (or God be with you).
Excuse me for the delay.

Claudia or Brazilian,,
Could you please explain again the what happened with the gear (?) the physiotherapist and the nurse? It sounds as though Laryssa is upset at the planned move (?).

When Laryssa is moved to the infimary, will Claudia continue her visits? Is there any possible way to make sure this happens? And if the answer to either is yes - can you tell her that now, Claudia?

O.

Ozij,

Thanks for the alternate translation it certainly takes on a different perspective to some of what I was trying to figure out.

The good thing is we can get the general picture & I am leaning towards the interpretation that Laryssa is perhaps excitedly curious as to what a birthday party is as the last one would have been her 2nd & she would probably have little recollection.

DSM

PS My translation had her 'beat' ing the physio (you had hit) but that seemed extreme so I toned it down

At one point it read like a 'baby' riot took place

D

Hi, all!
I am quite busy these days, trying to manage all my huge work load, since I will be one week out of the office, at InfoComm in LV, during next week.

................
Hello friends, I missed you already.
Today I was with Larissa, she is very well, and her nights have been very calm.
She's behaving a little bit badly, she hit the physiotherapist and quarreled with the nurse.
We had a conversation and I explained to her that she will be going to the infirmary in a short time from now.
June 29 is her birthday , she will be 3 years old. We are planning to make a party, she is a little bit stressed about the party. I think she does not know what a birthday party is.
Today during the visit took I some pictures, I will ask my friend Brazilian to post.
A kiss blue. Be with God. Excuse me for the delay.
..................

I had not the opportunity to talk to Claudia these last few days, but that's what I think - our little angel is doing well, her health is improving, she is building energy and getting bored being confined.
Also, all she knows about life is the ICU, where she has been since she was 1 1/2 yr old. Then she has to deal with the expectation of moving, to an unknown situation (which is better for her, indeed, but uncomfortable - humans feel uncomfortable with the unknown, isn't it so?). I will try to talk to the hospital psychologist, Dra. Déa, and see how are they preparing her for the next move.

Being at the infirmary will make much easier for Laryssa to receive visits. No special gowns to be dressed, not a tiny room anymore, surrounded by other children in extremely critical condition (a morbid view, if I am allowed to say so). Claudia (and others) will keep visiting her, and reporting the quality of Laryssa's family care of the child to the hospital administration.

So, I agree with Ozji - she is upset at the planned move, and we need to support and prepare her for a change. I will discuss this with Claudia tomorrow.

Ozij, thanks, you are such a sensible heart. I can feel this in your words and advices.

DSM, your translation is quite good, and I agree with the 'baby riot' idea... At least it is a sign of good health, in a sense....

Blue kisses!...

Thank, Barazilian.
I love that "Baby riot" treminology - and I am so happy at what it indicates of Laryssa's growing health an energy.

What we tell kids and what they understand can be worlds apart.

I was about 4 years old when I had to have my lungs X-rayed. My Daddy (who is a doctor) must have explained the procedure to me (this was about 1956-7). When we got there, there was man stirring something with a fork.

I have always been a very visual person, and to this day I remember vividly how I imagined that the next step would be holes puched in my chest with the fork so the rays could enter (I could see the holes....). You can imagine my panic. I cried (probably screamed and rioted) so bad that I threw up that Barium suspension when it was given to me. I'm sure none of the grownups about me had an inkling of the terrifying vision I was reacting to.

I hope you don't mind my adding the following:

Laryssa - like any child that age has to told about the future in very concrete terms - how far away the infirmary is from the ICU, what it looks like (pictures would be great). She has to be told she will be taking the new machine along with her wherever she goes, and all the other things she has in the ICU (dolls, photographs from her bed, etc.). It would make things easier for her if she knows ahead of time who will take care of her there - e.g. who will put her mask on in the evening. Some play acting may also help: of how she will leave (packing, walking or being carried by whom? Who will take her there - it should be someone she knows and trusts), who she will say good bye to (and who will cry when she leaves...) How many nights will she still sleep in the ICU? If it is possible to plan that ahead of time, I would put a box with 3 peices of Lego, or marbles, or something like that near her bed, and have a ceremony of removing one daily till the day of the move. Will ICU staff come to visit her? Will she be able to visit them? Even if she doesn't ask those things, she needs to know the answers - whatever they are.

The ICU has been her home and her family during a critical time in her life - its wonderful that she can leave it - but that doesn't make it much easier for her emotionally.

Doug,
My translation (i.e. Google's...) also had "beat" - but I doubt any three year old can "beat" a grown up. Therefor "hit" - with all the force and anger of a three year old...

O.

She must be feeling better. We must remember she is just turning 3, At her age she has little expirance at handleing and expressing her emoitions. I laughed when I read the discription of what happend because it wasn't so long ago that mine were this age, and I coluld see them reacting the same way. She is in a very frightening and stressful situation. She just needs to know that there are people who care about her.

I thought Ozij suggestions were really good, but I would also add a visit to the infirmary would be helpful.

Personally, I think this is a good sign. She is feeling well enough to show some spunk and express her feelings. I have a feeling that before she was pretty tired all the time. I have a child who had sleep apnea and just layed around and was tired all the time. I welcomed seeing him perk up, play more and get spunky.

Transition is VERY hard for children this age. She is probably very confused. She doesn't know any other home--many children of this age resist any kind of change--and for her this is MOVING as well as having different nurses etc etc. A very big change for a tot this age.

She will adapt but it could be rocky for a little while--but that is totally normal. I look forward to hearing more about how she adapts.

Jen

I actually smiled when I read it as my grown up daughter currently in hospital has to be talked through any change to her location & any looming procedures.

She can get quite obstinate & cross if she doesn't feel comfortable about what is happening. The classic in her case was that when coming out of her operation she appeared to ignore any requests from people she didn't know to respond to them & thus they rated her at the bottom for responsiveness after her hemorrhagic stroke. It was only when we family started talking to her & coaxing her that she showed her first responses.

The staff where she is now always phone the family (if one is not already there) to get someone to talk daughter through a planned event.

It was actually amusing to read that dear little laryssa was being so normal a child.

DSM

I too am glad that Laryssa has plenty of energy (from tranquil nights of sleep) to display typical spunk and behavior of a three-year-old.

But I have to say... I am so glad that Claudia and her volunteer associates do what they do for these children. Indeed that part of healing and therapy has to be at least as important as any BiPAP autoSV IMHO.

ozij wrote:I hope you don't mind my adding the following:

Laryssa - like any child that age has to told about the future in very concrete terms - how far away the infirmary is from the ICU, what it looks like (pictures would be great). She has to be told she will be taking the new machine along with her wherever she goes, and all the other things she has in the ICU (dolls, photographs from her bed, etc.). It would make things easier for her if she knows ahead of time who will take care of her there - e.g. who will put her mask on in the evening. Some play acting may also help: of how she will leave (packing, walking or being carried by whom? Who will take her there - it should be someone she knows and trusts), who she will say good bye to (and who will cry when she leaves...) How many nights will she still sleep in the ICU? If it is possible to plan that ahead of time, I would put a box with 3 peices of Lego, or marbles, or something like that near her bed, and have a ceremony of removing one daily till the day of the move. Will ICU staff come to visit her? Will she be able to visit them? Even if she doesn't ask those things, she needs to know the answers - whatever they are.

The ICU has been her home and her family during a critical time in her life - its wonderful that she can leave it - but that doesn't make it much easier for her emotionally.

Ozij, these psychological tactics seem primarily aimed at: 1) removing just as much uncertainty/doubt about Laryssa's impending circumstances as possible, and 2) providing as much continuity from old living arrangements to new living arrangements as possible. I sure hope I got that right. I'm no psychology expert!!

I also agree/suspect that this transition can be very unsettling for any three-year-old child. Laryssa has spent most of her present memories living under these circumstances. And now she is beginning to understand that she must soon leave her present life and almost all of her extremely important humans. But from Laryssa's three-year-old perspective, it must feel as if all those extremely key people are now getting ready to relinquish her. A very emotionally unsettling experience for any three-year-old child I would imagine.

Again, God bless Claudia for what she does. A blue kiss for her from all of us.

An absolutely stunning picture!!!

You can see the sparks in her eyes now!!

I want to express my heartfelt gratitude to so many on the forum that has undertaken this journey together. It is a true miracle that the pieces fell into place like they did and if you weren't a believer in miracles before this story should convince you!!

I just wish there were more that I could do at this time instead of being a bystander.

Good luck on your upcoming trip Brazilian. May all the benefactors one day meet.

Hi Brazilian,

I have sent the Respironics Encore Software and USB Card Reader. This (1) package is scheduled to arrive at your hotel in Vegas on Tuesday, June 17. The http://www.ups.com/ tracking number for this shipment is 1Z8335450259493936. Let us know that you received this package and perhaps another package with the white, ultra-fine filters, sent by another forum member. Have a good stay in Vegas. Let us know if you have any problems with the Respironics SW or USB Card Reader.

Best,
Banned

Brazilian,

Thank you so much for sharing Little Larissa's story and making it possible for people to help her. Sometimes I feel so discouraged by watching greed and dishonesty in action. This is the opposite - seeing the outpouring of support and love. Your act of asking for help for Larissa has resulted in such good. The photograph you posted of her says it all.

May God or whomever you believe in bless you!

Mindy

Oh, that picture is so gorgeous. Isn't she growing! Thanks for sharing it with us, Brazilian.

We are all afraid of the unknown at times. Just imagine how unstable Laryssa feels about any changes in her difficult situation. I'm glad Claudia will be there to help provide a bridge of continuity in her move.

Are they moving Laryssa to a unit where a family member can stay with her, that might make the transition easier for her to deal with ?