quinta-feira, 7 de junho de 2012

A Festa!

The Party!

The theme of Giovanni’s birthday party was the “Spotted Chicken,” a Brazilian cartoon character, which was chosen by his sister and his cousins Isabela and Marco Túlio Jr. It was great to be able to celebrate with Uncle Zeke, Aunt Kate, and cousins Luke and Isaiah, who came from the States, and with Aunt Sofia who came from Salvador, as well as our friends from the TCU, the meditation group, and the people who take care of him on a daily basis, with his grandmothers, all his “adoptive” aunts and uncles, the kids running around . . . Thank you very much for your affection and also for the good wishes of those who were not able to make it.

O tema da festa de aniversário do Giovanni foi da “Galinha Pitadinha”, escolhido por sua irmã e por seus primos Isabela e Marco Túlio Jr. Foi muito bom poder comemorar com o Tio Zeke, com a Tia Kate, Luke e Isaiah que vieram dos EUA, com a Tia Sofia que veio de Salvador, com os nossos amigos do TCU, do grupo de meditação, com o pessoal que cuida dele diariamente, com as Vovós, os “Titios” e as “Titias”, a criançada.... Muito obrigada pelo carinho e também pela lembrança de todos que não puderam estar aqui conosco.  

quarta-feira, 4 de abril de 2012

The Miracle of Life

Giovanni completa 1 ano de vida no dia 09/04. Fazendo uma retrospectiva de tudo o que aconteceu nesse período, pude perceber que a vida se renova a cada instante. Giovanni, tão pequenininho, já teve que passar por várias experiências nada agradáveis. Mas o importante é que ele está aqui em casa conosco, recebendo o nosso carinho e afeto e nos ensinando a viver um dia após o outro.  Gostaríamos de festejar o primeiro aniversário do Giovanni com os nossos familiares e amigos e também com a equipe do Home Care, que nos auxilia a melhor cuidar do nosso Neném. Quero dizer a você meu filho, muito obrigada por você existir!
The Miracle of Life
Giovanni turns 1 on April 9. Looking back on everything that has happened this past year, I have learned that life renews itself at each moment. Giovanni, though so little, has already gone through many unpleasant experiences. But what’s important is that he is home, receiving our care and affection and teaching us to take life one day at a time. We would like to celebrate Giovanni’s first birthday with our relatives and friends and with the Home Care team, which has helped us to better care for our Baby. My dear son, thank you for being a part of my life!

quarta-feira, 1 de fevereiro de 2012

A rotina restabelecida

Back on a routine

Many good things have happened since Giovanni came home. We got home health care for him, and some of my concerns gradually dissipated. His seizures are under control, he has gained a lot of weight, we were able to give him his vaccines, and his G-tube button was changed. He gets weekly doctors’ and nurses’ visits, a consultation with a nutritionist every other week, and both physical and speech therapy 5 days a week, in addition to the team of nurse’s assistants who are here 24 hours a day, 7 days a week. This has allowed me to get my life organized. I went back to work and am able to take better care of myself. We want to celebrate Giovanni’s 1st birthday in grand style, to show him how very happy we are to have him with us.

Muitas coisas boas aconteceram desde a chegada do Giovanni em casa. Conseguimos o Home Care e algumas das minhas preocupações foram  pouco a pouco sendo dissipadas. As convulsões foram controladas, ele ganhou bastante peso, conseguimos dar as vacinas e foi trocada a GTT. Ele recebe atendimento médico semanalmente, visita do nutricionista e enfermeira a cada 15 dias e terapia com a fono e com a fisio 5 vezes por semana e uma equipe de técnicas de enfermagem 24h, todos os dias da semana. Dessa maneira pude organizar minha vida. Voltei a trabalhar, a cuidar melhor de mim e do meu tempo. Queremos comemorar o aniversário do Giovanni, em grande estilo, demonstrando a ele toda nossa alegria de tê-lo conosco.

- Ana Cláudia

quinta-feira, 8 de dezembro de 2011

Viva! Giovanni está em casa.

Hooray! Giovanni is home.

The last few days at the hospital seemed like an eternity, but finally the day arrived for our baby to be back at home with us. It’s time for us to adapt to a new routine, plan for the future, reconcile our personal and professional lives and—the biggest challenge, from my point of view—reconcile Camila’s upbringing with caring for Giovanni. It’s also time for celebration. Giovanni’s arrival at home has brought us great joy and hope, much like Christmas, when we celebrate the birth of Christ. We have a lot to be thankful for: first, to God for the gift of life; second, to the ICU team at Santa Lucia Hospital for their care and affection for our son; and to our family, friends, and all the health professionals who have accompanied Giovanni on his path thus far. 

Esses últimos dias no hospital pareciam uma eternidade, mas finalmente chegou o dia do nosso neném ficar conosco em casa. É tempo de adaptarmos a uma nova rotina, planejar o futuro, conciliar a vida pessoal e profissional de cada um e o maior desafio, sob o meu ponto de vista, será conciliar a educação da Camila aos cuidados do Giovanni. Também é tempo de celebração. A chegada do Giovanni em casa nos trouxe muita alegria e esperança, assim como o Natal, quando celebramos o nascimento de Cristo. Temos muito a agradecer: primeiramente a Deus pelo dom da vida; a toda equipe da UTIP, do Hospital Santa Lúcia pelos cuidados e carinho dispensados ao nosso filho; aos nossos familiares, amigos e também a todos os profissionais da saúde que têm acompanhado a trajetória do Giovanni.   

- Ana Cláudia

terça-feira, 6 de dezembro de 2011

Sweet Giovanni, Home at Last!

Awesome news today! After 2 months and 6 days, Nenê is finally home! We are SO glad to have him back, and he seems to be enjoying it as well. We just put him on his gym mat, and he swatted at the hanging toys and then became very calm as he listened to the music. I read recently that 1p36 kids tend to have good memories, and I don’t doubt he remembered the music and the whole experience. I just thought it was great that he could finally roll back and forth a bit on the floor, after two months of being confined to a bed.

I’m also grateful for having Camila Daya reunited with Giovanni. She doesn’t pay that much attention to him, but the first thing she did when she got home from school was yell, “My brother!” Let me tell an anecdote that touches on her relationship with him. By the way, Daya just turned 4.

When picking her up from school a couple of weeks ago, we saw a plane in the sky. She mentioned that there was a man inside driving it. I told her that it was a pilot, and that girls could be pilots, too. I told her that when she grew up she could be a pilot, or a teacher, or a doctor, and so forth. She listened intently, and then confidently declared, “I will be a doctor!” A couple of days later, of her own accord, she told her grandmother (in Portuguese), “When I grow up, I’m going to be a doctor so that I can take care of Giovanni!”

I should note that the ICU team was superb with Giovanni, and very affectionate. It helps that he is very cute and calm, and many of the nurses and nurses’ aides took fondly too him. I appreciate that so much, especially because it meant he got a lot of love and stimulation beyond the few hours a day we were able to spend with him and the attention he got from the nurse’s aide that we hired on our own to attend to him during the day. Ana Lúcia is one of the hospital staff members that really fell in love with Giovanni. She would hold him for long periods during her night shifts and even give him extra baths, just to make him feel good. She had such a positive perspective on him and his condition, from the outset. Sometimes I find people’s positive, encouraging words to be somewhat forced and I don’t really buy some of the things they say. But, for some reason, everything she said to me about him registered and made sense on some level.

Above, I’ve posted pictures of Giovanni with Ana Lúcia, with the ICU team this afternoon, and of him in the ambulance on his way home.

My main concerns now with Giovanni are what they were before he went to the hospital. First, keeping his seizures under control. He has continued to have seizures, though fortunately they are very quick and not too numerous. Today his Phenobarbital dose was upped again, and he has to see the pediatric neurologist very soon. Second, early stimulation. Despite the great care he received, I think that two months in the hospital were a big setback in terms of the progress he was making in cognitive and physical development. I hope we can now make up for the lost time. Third, he needs to continue gaining weight and growing, though I’m relatively optimistic about this now that his feeding tube seems to be working out, and reflux is no longer a big problem.

We also need to get his vision and hearing checked out soon, as these tend to be affected by 1p36. 

In any case, it’s just fantastic to have Giovanni home and to look forward to Christmas with our kids.

quinta-feira, 17 de novembro de 2011

No breaks for Giovanni

Unfortunately, more bad news. I'm actually not sure I can explain very well, or if I'll get the terminology right (since we are in Brazil and everything is explained to us in Portuguese).
There was an unusual leakage in Giovanni's gastric tube - not outside his stomach and into his viscera, which is more common and more dangerous, but rather into the skin/fat layers. Some of the neocate (formula) was somehow leaking out of the tube into that epidermal layer and causing inflammation, which was only going to get worse. So an emergency surgery was performed, basically a whole new gastrostomy.
As a result, his little tube, which closed nicely with a little valve, and did not protrude out of his belly, was substituted by a long tube that does protrude outside his body. Worse, of course, is the fact that he had to undergo another surgery, and that now he is going to be sedated for about 4 days to allow it to heal. During this time, he won't be fed, other than intravenously.
After these initial days, the formula will be gradually reintroduced. If it goes well, he'll be able to go home (though I highly doubt that will happen in the next 10 days), and after 30 days, the tube can be replaced with the unobtrusive one, with a simple, nonsurgical procedure.
So sad . . . yesterday morning we had heard that he was doing so well, and we were so hopeful that we'd have finally have him home soon . . . and a few hours later this awful setback.

segunda-feira, 14 de novembro de 2011

7 meses de grandes aprendizados

(7 months of profound learning)

(I would like to share with you a little about how Giovanni's birth has changed my life. It has been 7 months of constant learning and numerous challenges to be overcome, as Victor has recounted.

I have had to learn many things at once.
  • I have learned that there is a force that drives us toward life.
  • I have learned to take a different view of the people around me.
  • I have learned to deal with the whirlwind of my emotions.
  • I have learned that a small victory in Giovanni's life is golden and brings much joy.
  • I have learned that every day is different and unique.
  • I have learned that there can be joy amidst suffering.)

Gostaria de compartilhar um pouco com vocês como o nascimento do Giovanni transformou a minha vida. Foram 7 meses de constante aprendizado e vários desafios a serem superados, como foi contado pelo Victor.

Tive que aprender várias coisas ao mesmo tempo.
  • Aprender que existe uma força que nos impulsiona em direção à vida;
  • Aprender a mudar o meu olhar em relação às pessoas a minha volta;
  • Aprender a lidar com o turbilhão das minhas emoções;
  • Aprender que uma pequena vitória do Giovanni vale ouro e traz muita alegria;
  • Aprender que um dia nunca será igual ao outro;
  • Aprender que pode "sim" haver alegria em meio ao sofrimento.

- Ana Cláudia