End of the saga

And so the saga ends...
Here I am in the Miami airport, waiting for my flight to Tampa. I've said goodbye to Diana and company and find myself strangely- alone!
I want to thank all you friends and family who so loyally followed this blog, through thick and thin. I miss you all, and hope to get back to real life soon!
So, this will be the last entry, and from now on you can write me by email: edigiacomo52@gmail.com.
I will be enjoying life as a senior for two weeks with my parents. The change will be extreme, but I am sure I will enjoy the relax!
Below see the last pics of Diana, Icho and the girls at the house, and their goodbye at the airport, where it was such a mess I had to say goodbye from the car!
See you all soon!


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Nos vemos en Espana!!!

Hola chicos,

Ya queda poco para marcharnos al aeropuerto de Miami con rumbo a Espana. Llegaremos a Madrid el martes hacia las 20:00 mas o menos. Ya tenemos todo empaquetado y solo falta ir a la biblioteca para devolver libros y DVD e ir a la farmacia a comprar un par de cosas para el viaje.

Nos volvemos a Espana con mucha experiencia adquirida, con una idea muy clara del camino que queda por recorrer y, lo mas importante, con la familia mas unida que nunca. El comportamiento de Diana y de Elvira ha sido admirable, de una fuerza y entereza insuperables.
 
En cuanto a las pequenas, podriamos escribir una novela con todas las cosas que han aprendido en este viaje y que nos han ensenado a todos. Patricia se ha desvivido por dar satisfaccion a Maria, ha sufrido cuando Maria lo ha pasado mal, ha sido una verdadera ayuda en muchos momentos, se lleva una experiencia que creo que no va a olvidar y que va a servir para hacer madurar su personalidad. Y que decir de Paula, un torbellino de alegria, descaro, imaginacion, simpatia... Esta para comersela.

En cuanto a Maria,  vuelve a Espana muy mejorada y con mucho mejor animo. Practicamente es independiente para desarrollar cualquier tarea que se proponga, su movilidad (y su caracter en consecuencia) han mejorado sustancialmente con el paso de los dias. En casa se mueve con el andador o a la pata coja, ya no hace falta estar sujetandola ni ayudandola para todo. Es un alivio para todos, especialmente para el padre que ha acabado pagando los esfuerzos extra con una tendinitis en el brazo derecho.

Buenos chicos, que enseguida nos vemos ya, tenemos muchas ganas de compartir las experiencias con todos y tambien saber como ha ido el verano de todos en nuestra ausencia.

Besos fuertes,
Icho.

Winding up

You might be wondering where we've been these days! Well, it's been busy as we wind up our visit here, going to the beach every morning, shopping, swimming in the pool, going to the library, visiting our friends...

On Friday, we went to the hospital to say goodbye to Dr. Paley's team and I asked when they thought Maria would be able to begin leg-lenghtening. One of the doctors said that he thought that probably in two to three years! Apparently, her femur needs to grow more to do it effectively. So it looks like we will have a break from this all.

Today we said goodbye to Martina, her sister and mother. We will miss each other, but this is a friendship that definitely will continue in Madrid.




Tomorrow we are going home- well, at least some of us!


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Easy living

Now that Maria has had the ok from Dr. Paley, we really have nothing much to do except enjoy ourselves until August 15, when Diana and family go home to Madrid, and I head to Tampa to visit my parents. (I will be returning to Spain on Aug. 28)
Today we spent the morning at the library, with the kids attending a storytelling and activity session.












Then a relaxing afternoon in the pool and a walk around the neighborhood.







What a great way for us all to recuperate!

Sesion clinica con Dr. Paley

Hola familia,

Ayer por la tarde tuvimos la sesion clinica con el Dr. Paley, tenia a 10 medicos procedentes de todo el mundo que le visitaban y esta aprovechando para ensenarles los casos mas singulares que esta tratando, entre ellos el de Maria. Como sabeis, el Super Hip 2 es una intervencion que se ha inventado practicamente el y de la que todavia no hay mucha experiencia y queria presentar a Maria como caso de exito.

El Dr. Paley nos comento que la radiografia (que os adjunto) tiene buena pinta, pero que no se puede asegurar el exito total de la operacion hasta que le quiten el fijador dentro de 4 meses. En ese momento se vera si todo ha soldado bien y si la cabeza femoral hace buen juego en el acetabulo, es decir, si la articulacion de la cadera funciona como debe. Pero hasta entonces nos podemos volver a Espana tranquilamente. Cada mes le enviaremos un RX para que vea la evolucion y cuando Dr. Paley lo considere, nos llamara para retirar el fijador y ver si todo ha ido bien.

Os incluyo fotos de la sesion clinica, fueron mas de 4 horas de espera para una sesion de 10 minutos pero asi funcionan las cosas por aqui.

Besos a todos,
Icho.

P.D: acabamos de dejar a Elisa en el aeropuerto, regresaba a casa en Aspen. Han sido 5 dias estupendos con ella, un soplo de aire fresco y una fuente inagotable de diversion y de conversacion. Gracias por visitarnos Elisorra!!!

While we were waiting...

First of all, Maria saw Dr. Paley yesterday evening. He was accompanied by a group of doctors from all over the world, who had come to see what Paley accomplishes. One doctor from Argentina commented to Icho that he considered it "science fiction"!
So, it seems, so far, so good. Maria will have to return to have her fixator taken off in four to five months, if all continues on track.

We had a busy day before that though, first having gone to the beach and out to lunch. Everything is so much more fun with Elisa! Then, while Diana, Icho and Maria were at the hospital, Patty and Paula had a baking party with Elisa, and made pizzas and cookies- yum!
Elisa will be leaving this afternoon and we all miss her already!

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Felicidades Paulita

Hola familia,

Paulita cumple hoy 3 anos y que mejor manera de celebrarlo que con una buena tarta en compania de sus hermanas, padres, grandma y 'aunt Elisa'.

Os dejamos unas fotos de nuestras peripecias de los ultimos dias. Hoy tenemos revision con Dr. Paley y Maria va a servir de conejillo de indias con unos medicos venidos de todo el mundo para aprender las practicas medicas que esta haciendo Dr. Paley aqui.

Luego os contamos mas.

Icho.

7 de agosto

Hoy he hecho un dia muy malo, ha habido una tormenta impresionante de esas en las que se va la luz y parece que se te vea a caer la casa encima. Incluso hemos tenido goteras en el salon, lo cual no es sorprendente viendo la calidad de la construcción. Hoy nos han venido a visitar nuestras amigas españolas y hemos aprovechado para celebrar el cumpleaños de Paulita, que mañana cumple 3 añitos. La razón por la que hemos adelantado la celebración es que mañana tenemos una importante
cita con el Dr. Paley. Haremos unas radiografías y nos dirá cómo va progresando la cadera de María. Mañana además el Dr. Paley va a tener unas sesiones formativas para unos cuantos médicos que le vienen a visitar desde diferentes partes del mundo y va a usar a María de modelo de su operación superhip2. A ver si nos da buenas noticias ! Mañana os contamos. Abrazos de Diana

Pre-Birthday Celebration!

As tomorrow (Mon) is a busy day for Maria at the hospital, we decided to celebrate Paula's third birthday this afternoon. We invited Martina, Jimena and their mother Ana to a birthday party at our house. Paula was frankly delighted with herself, and had a wonderful time- and so did we all!


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Family fun

Look at Maria swimming by herself in then pool! She is very adept now getting around, and is walking more and more.

Today Elisa took the girls to see "The Smurfs" movie- what are aunts for anyway? Then Elisa and I babysat for the girls while Diana and Icho went out for a romantic dinner alone- They definitely deserved it!

Good news- Avalanche Cheese, the company where Elisa's husband Kevin works, has won two third prizes at this year's American Cheese Society's Annual Competition! Congratulations Kevin!

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Los animales del lago

Tenemos unos amigos en el barrio que son patos,lagartos, ibis, y un cocodrilo. Os mandamos unas fotos bonitas para que les conozcais. Muchos besos de patricia Y maria







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Maria's not the only one!

As unlikely as it might seem, two of our stuffed animals have had surgery just like Maria!
Pinky the cat and Amedeo the monkey, luckily, are now on the mend.
Here is a picture of the brave wounded.


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Marathon day!

Today we left the house at 10:30 in the morning and we got back at 8pm!
We spent the morning bargain hunting at TJ Maxx and Marshalls, leaving the stores with bags of goodies.
Then on to a pizzeria for lunch with the Gonzalez family, to introduce them to Elisa, and to say goodbye to the Dad, Goyo, and one the daughters, Anita, who are returning to Spain tomorrow.
Then both our families went out to the beach, our girls having a great time with the "big" girls, Martina, Anita and Jimena. Maria only wanted to go in the water with their mother, Ana, who dedicated herself entirely to Maria and her whims- what a fantastic family!
Back home, a quick dip in the pool, dinner and to bed. The girls are having lots of fun with Elisa and had a bit of a pajama party with her before going to sleep. (See pic)



Ah, and the perk of the day- we saw a great big alligator cruise around the canal behind our house!
What a great day!


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Elisa is here!

Elisa arrived last night, bringing her usual cheery self. The girls are delighted to be with her, and everyone's mood has improved, especially Maria's. She is now hopping out of her wheelchair by herself, and walking around with the house with her walker. I think she is "showing off " for Elisa's benefit, which is great.
Then, this afternoon, Caroline Eaton, the Paley Institute's patient liason, came for dinner, and we showed her how to make a paella.
Caroline herself was a leg-lengthening paitient as a child, which impresses Maria very much. She explained lots of things to us, and gave us more insight on the process. We have lots to think about...Here's a photo of Caroline with Maria.


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Fotos de Tortugolandia

Hola familia,

Os prometimos unas fotos de Tortugolandia y aqui teneis alguna, la de abajo del todo es una tortuga que han estado recuperando despues de haber tenido un accidente con la helice de un barco y a la que daban el alta hoy. La volvian a sacar al mar despues de unos meses de curacion y rehabilitacion al mas puro estilo Dr. Paley. A las 10:30 de la manana la han sacado al mar para soltarla y se ha liado parda en la playa. Habia centenares de personas para ver el acontecimiento, nosotros lo hemos visto a distancia, ya sabeis que nos nos gustan las aglomeraciones...

Esta manana hemos vuelto a la playa, todo sigue su curso sin incidencias, Maria ya no pone pegas para banarse en el mar y cada vez se queja menos por las curas de sus heridas. El tema psicologico lo lleva un poco peor, esta abusando un poco de su situacion de desventaja y nos esta volviendo un poco locos (especialmente a la madre) con sus quejas y reclamaciones (algunas de ellas nos ponen al borde de un ataque de nervios). Afortunadamente somos 3 adultos para lidiar con ello, cada dia ponemos el contador de nuestra paciencia a cero pero aun asi hay momentos en los que Maria nos pone a prueba seriamente.

Os dejo tambien unas fotos de la familia espanola de la que nos hemos hecho amigos, los Gonzalez Collados. Son una familia fantastica (se nota que son de Madrid). Tienen 3 hijas, Jimena de 17 anos, Ana de 14 y Martina de 11. Se llevan estupendamente con nuestras hijas y el matrimonio es encantador, un ejemplo de superacion de obstaculos constante.

Esta noche viene Elisa desde Aspen tras 3 escalas: Aspen-Denver-Charlotte-West Palm Beach, si todo va bien esta noche estara durmiendo ya en casa. Va a ser una ayuda muy importante, un respiro para todos y una fuente de alegria en la casa.

Os iremos informando.

Besos a todos.

Icho.

Summer Schmoozing

We have been spending our days keepiing busy, with the beach, pool, shopping, etc. The girls have lots of ENERGY and I remember now why Moms love summer camp!
Today we went to Loggerhead Marinelife Center on Juno Beach. We got to see the fish fed, and the collection of turtles they shelter there, taking care of injured ones until they can be released again into the sea. The girls really got into it, with Maria getting around with her walker. Our Spanish friends joined us there, making it double the fun.
Later, they came over to our house for a swim and a pizza party for dinner. What a social life!
Icho promises to publish tomorrow the pictures of us with the turtles-watch for his update!

Celebrating St. Ignatius Day!

Today is St. Ignatius Day and coincidentally the church we attend here is St. ignatius Cathedral! There was a big celebratory mass with lots of guitar playing and singing and we all enjoyed it, we felt it was in honor of our own Ignacio. Paulita had a great time flirting with a teenage boy in the pew behind us, so I'm not sure if she got the full religious signifigance of the event!

This morning we "beat the crowds" and got to Juno beach at 9:10! After her initial hesitation, Maria finally went into the water in her father's arms and actually enjoyed herself. The salt water is especially good for her pins, so we will try to do this every day.
(see pics in Spanish entry below) So we can all enjoy the therapy!

Viva San Ignacio!!

Hola familia, 

Hoy festividad de San Ignacio de Loyola han ocurrido en WPB una serie de eventos muy singulares, a saber.

Nuestro objetivo del dia era conseguir que Maria se diera un chapuzon en la playa dado que le viene fenomenal el agua marina para la limpieza de sus heridas y cicatrices. Para ello hemos puesto todo de nuestra parte y hemos logrado estar a las !!!9 de la manana!!! en la playa, toda la familia con los banadores y la crema solar puestos, con la silla de ruedas, dos sillas playeras tipo Maruja, toallas y aperitivos varios. Al llegar a la arena, la senorita Maria no queria banarse en un primer momento. Afortunadamente y gracias a la labor psicologica de su querida 'grandma', nos ha concedido finalmente el privilegio de disfrutar de sus aptitudes acuaticas. Podriamos decir incluso que acabo disfrutando del bano, y toda la familia acabo encantada de haber conseguido el objetivo marcado. Como veis, aqui no se regala nada, todo hay que sudarlo aunque sea un banito en la paradisiaca playa de Juno Beach.

A las 12 de la manana ya estabamos de vuelta en casa, para comer algo y descansar. La higiene de las heridas de Maria cada vez va mejor, es una tarea evidentemente que no gusta ni a ella ni al 'enfermero' de turno, pero cada vez tiene mas asumido que hay que hacerlo y que no hay mas que hablar.

Despues de comer hemos ido a la biblioteca, uno de nuestros lugares fetiches. Alli pasamos largas horas leyendo, haciendo diversas actividades y aprovechamos para sacar unos videos y libros para el entretenimiento de todos. Es un sitio fantastico.

Me imagino que ya todos sabeis que finalmente nos volvemos el dia 15 para Espana, llegamos el dia 16 de agosto a Barajas, sobre las 20:00. Elvira se quedara unos dias mas visitando a sus padres, seguramente ella vuelva a principios de septiembre.

Seguiremos informando, os dejo un par de fotos de la manana playera, en la primera aparece recogido el primer bano de Maria en el mar despues de la operacion.

Besos fuertes para todos.

Icho.

 

Happy Birthday, Icho

Fri. was Icho's 35th birthday and we celebrated it in style.  First thing, at breakfast, he got his present from us all: his own ipad, complete with a blue cover.  Now, if only the girls give him a turn at using it...!
Then, at lunch we had a Carvel ice cream cake- you Americans will now how delicious they are- complete with candles.  And dinner at the Cheesecake Factory, a very enjoyable restaurant, where dessert was a tiramisu cheesecake that the waiters brought out while singing "Happy Birthday"- talk about "americanadas!".

We took Maria to the beach for the first time and she also got into the pool, though she was a bit apprehensive.  But she is getting more confident about walking, and cleaning her pins is a much easier chore now.  She has the ipad while it is being done, and she likes to see Mr. Bean videos, or play Angry Birds, so it is a cultural experience as well!
She has been throwing her weight around lately with her sisters (a pain, but a good sign of her feist!)  and finally Patty had to say to her, "Maria, just because you had a leg operation doesn't mean you can boss us around"!  Back to normal...

Today, Sat.  has been a stay-at-home day, basically in the pool and now we will be going out for a while, probably to the library.  I'll write again soon.

Ronald MacDonald visits Paley's kids

We had a great time with Ronald MacDonald this morning. The kids all got to participate, and our girls really got into it!









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A week gone by

It's been a week now since the operation and Maria is improving by leaps and bounds.  We went to the library today and she participated in a story hour and activity and walked with her walker.  She is no longer taking medication and is slowly letting us touch her pins without fear.
Our friends the Gonzalez family visited us today, and we had a lovely lunch with them and a swim in the pool.  Maria still wasn't able to swim with us, but she sat in her wheelchair and watched the fun without complaint.  She knew that Martina, their daughter who is having her leg lengthened, was having a hard time of it, and she leaned over and gave her a kiss. (That from the Iron Maiden!!!)
Icho and Diana have been able to change their plane tickets and will go home on Aug. 15.  I will stay on to visit my mother, but have no departure date as yet.
Elisa will be coming to visit us on Aug. 4- we can't wait!  She will be staying until Aug. 9.

Maria con andador

Poco a poco vamos quemando etapas.

Ups and Downs

We had a rough start Tues. morning, as Maria needed to shower to clean her pins before going to therapy at the hospital.  She doesn't like having the pins touched and resisted loudly.  But her parents stayed firm and the deed was done.
At the hospital she learned how to walk with a walker.  It has wheels, and she moves it along as she hops on her good leg, her short leg never touching the floor.  She proudly took a stroll around the kitchen to strut her stuff, which was a good sign. It was very tiring, but she was happy to be mobile.
The rest of the day was a bit of R&R after the taxing morning.  Pool, a stroll around the neighborhood lake, feeding the ducks, etc.  I actually was able to read two articles in a magazine! Luxury...

Nos vamos a rehabilitacion

Hola gran familia,

Hoy vamos a ir por primera vez a una sesion de rehabilitacion para que ensenen a Maria a caminar con andador. Ahora mismo va en silla de ruedas, esta comoda pero con evidente falta de movilidad. Maria tiene el fijador puesto desde la pelvis hasta la tibia, por lo que tiene bloqueadas la articulacion de la cadera y de la rodilla. La unica articulacion movil de la pierna derecha es el tobillo, y asi sera hasta que le sea retirado el fijador (previsto en unos 4 meses, antes de Navidad seguro).

Hasta entonces, Maria tiene la pierna derecha rigida, como si estuviera escayolada. Tenemos que ayudarle practicamente en todas sus tareas personales, pero lo estamos llevando bastante bien, no podemos quejarnos viendo lo que hemos visto en las ultimas semanas en el hospital.

Manana ya podra empezar a banarse en la piscina, nos han dicho que no hay ningun problema, siempre que despues del bano sequemos bien las heridas y pongamos unas vendas secas que cubran los clavos y que impidan lo maximo posible la entrada de agentes exogenos. Es muy complicado conseguir la esterilizacion completa de las heridas, alguna infeccion vamos a tener, pero intentaremos que sean las menos posibles.

Por lo demas, estamos intentando cambiar la fecha de vuelta de los billetes, no va a ser facil. En la segunda quincena de agosto hay pocas plazas y muy caras. Patricia, Paula y yo tenemos el vuelo cerrado para el 8 de septiembre, si no hay otro remedio igual intentamos meter a Diana y a Maria en ese avion tambien y solo pagariamos 2 penalizaciones y 2 billetes nuevos en lugar de 5.

Nos estan ayudando mucho desde la agencia (Pilar y Dani desde Sevilla), si encontramos algo bueno os lo comunicaremos para que sepais la fecha exacta de nuestro regreso.

Un beso fuerte para todos,
Icho.

Monday, Monday

Maria went to see Dr. Paley who showed us a beautiful xray of her two hips, now aligned after the surgery. Now we just have to hope that the healing and development continue the way he hopes...
Maria, on seeing the xray, which clearly showed her naked buttocks, whispered to me in horror "Grandma, was I naked during the operation?". Goes to show what is going through her head!!!

We spent the afternoon at the Quantum House, the residence where the Gonzalez family is living, where they were having a Family Fun Day. There were all sorts of games and pizza and ice cream and we got to be with a lot of other kids and families. It was good for Maria to see the situations of the other patients, most of them much more serious than hers.

Patty is being an excellent sister, and helping out whenever she can. She makes friends wherever we go, and keeps Paula occupied too. Paula is such a character that people stop us in the street and stores to coo "how precious!" all the time.

Though I guess we all get to be "crankypants" once in a while, we have all tried our best to keep our spirits us, and take it one day at a time. And appreciate what you have! Even an old dog like me can learn!

Pre-Birthday celebration

As tomorrow (Monday) is a busy day for Maria at the hospital, we decided to celebrate Paula's third birthday in style today, inviting Martina, Jimena and their mother Ana to our house for a birthday party. Paula was quite frankly delighted with herself and had a wonderful time- so did we all!

Por fin una entrega en español

Hola a todos: Antes de nada, agradeceros a todos los animos que nos estais enviando, os aseguro que nos dan mucha fuerza! Los ultimos dias han sido un poco caoticos, con Maria acostumbrandose a la sila de ruedas, el fijador (que hace lo mismo que una escayola, inmovilizarle la cadera y la rodilla) y a las curas que le tenemos que hacer de los clavos que le atraviesan la piel hasta el hueso. El dolor de la cirugia poco a poco va remitiendo, pero la niña todavia tiene mucha ansiedad, y cualquier movimento brusco o molestia le puede ocasionar un llanto incontrolable. No obstante, por otro lado empieza a resurgir la Maria que todos conocemos: valiente, inteligente, madura y sobre todo, cotilla! Hoy hemos visto al Dr Paley y nos ha enseñado la radiografia de lo que le ha reconstruido, la verdad es que impresiona porque se ve ahora una mini cadera totalmente normal. Ahora hay que esperar a ver si los huesos se fijan adecuadamente y podemos alargar el femur en un futuro proximo. Tambien nos ha mandado a unas sesiones de fisio para aprender a andar con el andador, aunque sin apoyar la pierna operada, por supuesto. Gracias a Dios hemos conocido a una familia de Madrid que tambien esta aqui con su hija de 11 años y que nos esta ayudando muchisimo tanto desde el punto de vista "tecnico" como emocional. Ayer nos juntamos en nuestra casa para comer paella y nos lo pasamos estupendamente, son un apoyo fundamental para nosotros. Estamos viendo ya fechas de vuelta a Madrid, estamos barajando volar a partir del dia 15 de agosto con la inestimable ayuda de nuestra querida Pilar. Muchos besos a los que nos leeis, os queremos mucho y esperamos veros pronto.

What a difference a day can make!

Today has gone fantastically well!  The Gonzalez family, Goyo. Ana and their two daughters Ana and Martina spent the day with us, and it couldn't have gone better!  Martina is into her second leg-lengthening, and is 11, and she was a great help to us, showing Maria how she manages her fixator, how it gets the pins cleaned, not to be afraid of moving it, etc.  Maria adored her, and watched her every move.  So we had no crying or whining when it was time to get on with her pin-cleaning- a huge step forward!
This family is living on the hospital campus in one room, so they had a dandy time visiting us in our lovely house and pool!  Icho made tortilla and I made a paella, so they were delighted with the menu! ( I also realized that today was Paellas en Getxo, so I was right in tune!)  Besides for eating, we had lots to talk about, and we learned a lot from them, as they have been dealing with this since their daughter was 3.  They also live in Madrid, so I am sure Diana and Icho will keep up with them at home.
Maria (and her sisters too!) really enjoyed the company of the other girls and they have gone to bed exhausted but happy.  Me too!

Home Again

Saturday was an exciting day for us all, as Maria has come home from the hospital.  The doctors are all pleased with her progress, but she is really exhausted, and, in fitting with her personality, frankly cranky!!!  She needs to rest and recuperate, as she has gone through a lot, both physically and mentally.  She swings from ignoring the brace on her leg, to crying that it hurts and then resisting taking her medication.  In the evening she even tried to convince us that her ear was hurting!  Poor baby doesn't know how to express her confusion with this all.  We are trying our best to soothe and reassure her, and this morning, Sunday, she seems much more reasonable.  Her sisters have decorated her wheelchair with loads of stickers and she is being treated like a queen. 

We are trying to adjust as well, as she needs to be attended to even to go to the bathroom.  She needs to be picked up with care, and just settling into her chair, or bed, or the sofa can be complicated.  Hopefully she (and we) will get the hang of it soon.

I can only praise the patience and determination of Diana and Icho who are tirelessly at her side, giving her the love and attention she needs, while helping her come to grips with this situation.   It is not an easy job, and I am very proud of them.

We have a big day ahead- a visit from the Spanish family who's daughter is also a patient of Dr. Paley.   I will write again tonight or tomorrow!!

Tomorrow home!

Today Marichi has made great progress, she's off the drips and taking her medication orally. She hasn't complained about pain, and seems to be getting used to the fixator. She sat in a wheelchair very comfortably, and even enjoyed wheeling it herself. Diana and Icho decided to buy her one instead of renting as she will be using it over the years, whenever she has her leg lenthened.
Her sisters insisted on bringing her a bunch of presents, as seen in the photo below. She is wearing a princess hat, a wand, a gold medal, home-made necklace and bracelet, and even a new Barbie. Obvioiusly, everyone joined in on the fun!
Maria is scheduled to come home tomorrow, and we are anxious to all get back to "normal"- whatever that is!
Our return dates are still up in the air, as the girls are still awaiting papers to be able to file for American passports. For now, we will continue enjoying our "vacation"!

Manana a casa!!!!!!

Hola a todos,

Ya de vuelta del hospital, he dejado a Diana con Maria descansando. Esta fenomenal, ya vuelve a ser ella en plenitud. El fijador no le molesta, despues de 6 horas de tomar el analgesico estaba un pelin molesta pero nada mas. Cada 6 horas toma un compuesto de paracetamol y codeina que le quita el dolor y le da muuuucho sueno.

Manana le dan el alta, tenemos unas ganas locas de estar todos bajo el mismo techo. El dia 8 de agosto tenemos revision con Dr. Paley que nos dira que volvamos en 4-5 meses para quitar el fijador y dar por concluida la primera fase del proceso. Estamos mirando ya la posibilidad de cambiar las fechas de los billetes de avion para volver cuanto antes, el unico tema que nos preocupa es que estamos esperando documentacion desde Espana para poder tramitar los pasaportes americanos de las 3 ninas. Queremos volver a Espana con los pasaportes de EEUU ya fisicamente expedidos aqui y para eso tenemos que ir a Miami con mucha documentacion, un par de semanas antes de coger el avion de regreso.

Iremos informando de la fecha final de regreso. Maria va a estar moviendose un tiempo en silla de ruedas, hemos comprado una en el hospital porque no compensaba alquilarla, dado que vamos a tener que usarla en Espana y cuando volvamos a EEUU para las fases de alargamiento.

Os dejo una fotillo que refleja el primer momento en que Maria se ha sentado en su silla de ruedas despues de estar 3 dias tumbada, todo un logro!!!

Besos para todos.

Icho.

Onward and upward

Today has been a much better day for Maria.  She was not so groggy and the pain was under control, and she even ate a bit.  We have been taking turns in the hospital.  Today I spent most of the afternoon there with her and Diana, but then I sent Diana home to have dinner with Icho and the girls (they miss her too!)  In the end, Maria wants her Mommy to spend the nights with her, so Diana will be the night nurse again tonight! Icho has been great too, juggling being in the hospital, with the kids, and chauffering me around. 
Dr. Paley came around today and was happy with her progress.  After she leaves the hospital (hopefully in a day or two) she will not need to do physical therapy.  And her last visit to Dr. Paley will be on August 8.  So it looks like we will be free after that date...but we will see...

Dia de Dolores

Buenas noches,

Hemos pasado un dia un poco malo, Maria ha estado muy molesta con dolores de la operacion, del fijador y de las cicatrices varias y los medicos han tardado en darle la dosis adecuada de analgesico. Primero le han dado demasiada y finalmente parece que han dado con la tecla a partir de las 15:00. Desde esa hora Maria esta muy tranquila, descansando y sin dolor.


Diana se ha quedado con ella en el hospital y esperemos que descanse bien y que manana sea un dia mejor para todos.

Besos muy fuertes a todos.
Icho.

First day of post op

After all the excitement of the operation, today brought us back to the real world. It was not a great day for Maria, hopefully tomorrow will be better. The doctors seem to have found a correct dose of painkillers for her, however, and she had a restful afternoon and evening. Diana will stay the night again with her.
Thanks again for all the letters of support, now we need your prayers for her recovery.

The operation has been a success!

It is 7am July 20, and I am going to translate the post that Icho wrote late last night:

It is 2am here, and I just got home after being at the hospital since 8 am yesterday! I am just going to write a bit and then go to bed!

The first and most important thing: the operation has been an ABSOLUTE success. Dr. Paley came out of the operating room with an X-ray he had done when he had finished, saying that the surgery had gone very, very well. His assistant, afterwards, said that he doesn't usually show x-rays, but in this case, the results had been excellent.

In the end, he was able to do a Super Hip 2 surgery on Maria, reconstructing the hip to make it as normal as possible, using the femoral head that she had, placing her femur in its place and fusing them together. He was able to give mobility to the hip, making it a functional joint. In the doctor's words, the xray shows that the hip should be functional in the future.

As well as the Super Hip, he also performed a Super Knee, a surgery on her knee to stretch it and eliminate the odd angle her knee gave her leg. This added to the femur in place will help her leg be as "normal" as it can be.

Instead of a cast, Maria has an external fixator that will immobilize her hip and knee, which she must have for 4-5 months. It is pretty big and is embedded in her skin, but will keep everything in place while the bones consolidate.

Tomorrow we will get more details, but it looks like we might be able to return to Spain in 2-4 weeks. after 4-5 months, Maria will have to return to the hospital to have the fixator removed. right now, she won't need much therapy, more rest and care of the screws and nails she has in her skin. In 2012 we will ready for her first leg-lengthening, which, with this operation has more possibilities of success.

We still have a long way to go, but Dr. Paley is very satisfied with this start.

Diana has stayed to sleep in the hospital with Maria, I a going to bed now as tomorrow will be a long day again.
Kisses to you all and we will talk tomorrow.
Icho

Exito total en la operacion de Maria!!!!

Buenos dias a todos (casi las 02:00 AM en WPB),

Acabo de llegar a casa despues de estar todo el dia (desde las 08:00 AM) en el hospital. No puedo mas. Escribo unas lineas para que las leais a primera hora desde Espana y luego espero dormir algo.

Lo primero y mas importante: la operacion ha sido un exito ABSOLUTO. El Dr. Paley ha salido del quirofano con una foto de la radiografia que le ha hecho a Maria al terminar la operacion diciendo que ha sido una intervencion brillante. Nos ha dicho su asistente que no suele salir a ensenar fotos a los familiares porque lo normal es que haya alguna pega o algun tema que debe retocar, pero en este caso la intervencion ha sido impecable.

Finalmente le han hecho a Maria el Super Hip 2, le han reconstruido la cadera haciendo que se parezca lo mas posible a una cadera normal, utilizando la cabeza femoral que tenia, colocando el femur corto en su sitio y fusionando ambos. Ademas, ha conseguido dar movilidad a la cadera, por lo que la articulacion parece del todo funcional. En palabras del doctor, la radiografia muestra una imagen estupenda de lo que debe ser una cadera funcional en un futuro. Conjuntamente con el Super Hip, le ha realizado un Super Knee, una intervencion en la rodilla para estirarla y eliminar la flexion con la que Maria habia nacido. Asi se consigue un femur en su sitio con una articulacion movil y una rodilla estirada como la de todo el mundo, es decir, un principio de lo que puede llegar a ser lo mas parecido a una pierna normal.

Le han colocado a Maria un fijador externo que le va a mantener inmoviles tanto la cadera como la rodilla, por un plazo de entre 4 a 5 meses. Es algo aparatoso y va metido dentro de la piel pero su funcionamiento es igual al de una escayola, se trata de inmovilizar la zona para que consoliden las cirugias.

Manana nos daran mas detalles pero seguramente en 2-4 semanas estemos de vuelta en Espana, Maria debera llevar el fijador de 4 a 5 meses y luego tendremos que volver a WPB a quitarselo. Para este tipo de intervencion no es necesaria mucha fisioterapia, basta descanso y cuidado e higiene de los tornillos y clavos de Maria tiene adheridos a la piel. A partir de 2012 ya estaremos preparados para la primera fase de alargamiento, que con una operacion como la que le han realizado hoy tiene mas posibilidades de exito.

Hoy hemos dado un paso importante, queda mucho por recorrer pero el Dr. Paley esta muy satisfecho con lo que hemos avanzado hoy.

Diana se ha quedado a dormir en el Hospital con Maria, a ver si consigo dormir algo porque manana el dia sera tambien largo.

Besos a todos y manana hablamos.
Icho.

Todavia sin noticias

Como ya es tarde en Espana, quiero que sepais que se ha demorado unas horas la operacion de Maria, y no empezara hasta la tarde, ya noche en Espana.  En cuanto tengamos alguna noticia, lo pondremos en el blog.

Still no news....

We know that there are a lot of you out there awaiting news, so this is just to let you know that the hour for the operation to begin was pushed back, and should be starting in early afternoon, Florida time, and late evening in Spain time.
As soon as there is anything to report, you will have it.

Operation time: 8:30 AM (14:30 in Spain)

Today was a big day, Maria went to the hospital to have her blood drawn (see pics below) and she was a very big girl and didn't even say "ouch"!  We are very proud of her!
Tomorrow she goes into the hospital at 8:30 am.  The operation should begin about two hours later.  As soon as we know how things have gone, we will let you know. 
Many thanks for all the loving messages we have been receiving, it is wonderful to have such a great cheering section.  All your "good vibes" and support have helped us during these days of waiting.

Hora: 8:30 AM (14:30 in Spain)

El momento ha llegado, ya tenemos hora para la cirugia de manana, a las 8:30 AM hora local de aqui (14:30 hora de Espana). 

En cuanto tengamos resultado de la operacion os informaremos.

Rafa y Nati, manana por la manana una velita a San Bartolome en la iglesia de Mijares para tenerlo todo bien atadito. Don Angel, lo mismo con la virgen de Begona.

Besos para todos.

A falta de un dia para la operacion

Hola a todos,

Antes de nada, disculpad la falta de tildes y de la letra 'enhe' en todo este post, que estoy escribiendo en un teclado que no admite caracteres 'hispanicos'.

Muchas gracias por todos los correos que estamos recibiendo, estamos intentando responder a todos individualmente. Si no os respondemos al momento es por falta de tiempo, podeis consultar el blog siempre que querais para ver la informacion mas reciente.

Como habeis visto, ayer estuvimos en una barbacoa organizada por Dr. Paley en la playa. Nos reunimos los ninos/as y las familias que estamos pasando aqui una temporada con tratamientos muy diversos. Fue realmente una experiencia muy buena, vimos unos casos increibles (una familia con 3 hijos y los 3 hijos tenian un problema diferente que estaba tratando Dr. Paley). El caso de Maria es serio pero ayer vimos de todo, desde ninos acondroplasicos, en silla de ruedas, sin alguno o varios miembros inferiores o superiores... Un autentico festival, vamos.

Fue enriquecedor conocer a muchas familias que estan pasando por lo mismo y ver el concepto que tienen del doctor y el animo con que llevan su estancia aqui. Conocimos a una familia de Madrid (viven cerca del Vicente Calderon) que tienen a una hija de 10 anos que tuvo un tumor oseo en el femur con 3 anos. Literalmente, le tuvieron que cortar un trozo de femur y tenia un hueco entre los dos extremos que habia que rellenar. En Espana le hicieron varias operaciones y no consiguieron regenerarle el hueso pero el Dr. Paley lo consiguio hace 2 anos. Desde hace 2 anos le estan alargando el hueso y ya van por 10 cm. No tienen palabras para describir el trabajo del Dr. Paley, en Espana la solucion que les daban era la amputacion de la pierna porque no conseguian unir los dos extremos.

Estamos con los animos muy altos, sabemos que manana la operacion va a ir bien, el Dr. Paley ha visto cientos de casos como el de Maria y sabemos que cuando le abra, decidira la mejor opcion. Estamos en las mejores manos, ayer nos lo dijeron todas las personas con las que hablamos.

En una hora salimos para el hospital para que saquen sangre a Maria, en la operacion le van a transfundir sangre y van a mirar compatibilidades. No sabemos todavia la hora de la operacion, tenemos que ir en ayunas al hospital a primera hora y en cuando el Dr. Paley tenga un hueco (es una operacion larga, de 3 a 4 horas) nos metera. Cuando este metido en faena, saldra a decirnos que tipo de cirugia que va a realizar. Dependiendo de eso, veremos los proximos pasos.

Besos a todos y en cuanto sepamos algo mas os diremos.
Icho.

What a weekend!

Counting down the days to the operation, and we are keeping busy and enjoying the free days.  Sat. and Sun. have been beach days for us, as we explored the beautiful Palm Beach shore.  Yesterday we went to Juno beach, a fantastic white sanded strip, miles long.  We were lucky enough to find ourselves at the wooden pier there, that is like raised boardwalk.  As we don't have a beach umbrella, we were able to sit "under the boardwalk",  and play and even picnic there!
Today (Sun.) we attended a Beach Party for the "Paley's Kids", and all of Dr. Paley's patients were gathered together for a barbecue on Riviera Beach. It was a wonderful opportunity for us to meet the many patients (and their families) that are being treated this summer here.  There must have been at least 85 people there, including Dr. Paley, the CEO of the hospital and various other physicians.  (See pictures below) It was amazing to see all the kids (and adults too), in their various stages of treatment, some with really serious afflictions- a real eye-opener.  The common denominator for us all is our faith in Dr. Paley, who is considered by many to be a "genius".
We met a lovely family from Madrid. whose 10-year-old daughter is lengthening her leg this summer.  We have invited them to visit with us, as they are living in cramped quarters- and no pool!  Horrors!
We realize just how lucky we are, together in our little house, with this opportunity to help Maria.  We are learning so much...

Barbacoa con los chicos de Paley

 

The Go-Ahead!

Maria and her parents have just gotten back from the hospital, where Maria was given the go-ahead for the operation on July 19! 
The doctor´s assistant gave Diana and Icho more details about what they were going to do, but basically, the type of operation will be decided when they actually can see inside her, with an incision from her hip to her knee.  Then they will choose either the Super Hip 2, or the alternative, and whether or not they will also try to fix her knee, and, of course, whether they will do the leg-lenthening now or later.
Once she is opened, Dr. Paley will leave the operating room to consult with Diana and Icho about what he has decided is best.  Then he will go back in and finish up.
The type of external fixator and treatment to follow will depend on which surgery he actually does.
We expect a three-night stay in the hospital and she can have one parent stay with her.  She has asked that Grandma stay one night with her- we´ll see if that can be arranged!  What an honor!

Tonight Angel is leaving to go back to Spain.  He will be sorely missed by us all.  All you "bilbainos", please keep an eye on him for me!!!!

Luz verde para la operación del día 19 de julio

Hola,

Acabamos de llegar del hospital, María está curada y tenemos confirmada la fecha de la operación, próximo martes, no se sabe todavía la hora exacta.

Aunque no estaba el Dr. Paley (de vacaciones), su ayudante nos ha dado más detalles de la operación. La conclusión es que el tipo de operación se decidirá sobre la marcha, el doctor hará una incisión desde la cadera hasta la rodilla y verá el tipo de cirugía más adecuada para estabilizar la cadera y la rodilla. Hasta que no abra a María no sabremos si va a hacer el Super Hip 2, si va a hacer el primer alargamiento, si le va a tener que arreglar la rodilla también...

En el mismo momento de la operación el dr. Paley saldrá del quirófano y nos dirá lo que va a hacer y qué tipo de fijador externo le va a poner y el tratamiento que habrá que realizar. Así que no podemos anticipar nada hasta el día de la cirugía, ese día se decidirá todo.

Seguiremos informando, lo importante es que María está muy bien y está ya muy mentalizada con 'el aparato' que le van a poner.

Besos a todos.
Icho.

Basques in Florida!

On our way back to Palm Beach, we decided to stop off in Sarasota and visit another "displaced" Basque- Anamari Jayo, former ASB student, who is married and living here.  Anamari has just had her second son, Luca, two weeks ago!  So we got to see her, as well as her husband Cory, son, Ethan (4) and even her parents and good friends of ours- Pedro and Maria Jesus.  Lunch was a feast and it was great to catch up on all our news. Thanks for a great afternoon!

Family reunion

We've been having some lazy days, soaking up the sun poolside, and schmoozing with the family. The kids are enamored with Nonna and Nonno and snuggle up to them whenever they can.
Yesterday my brother Angelo and his wife Marsha arrived to visit as well, which was a stroke of luck as they planned their trip before they knew we were coming. They hadn't seen the girls in four years. Lots of hugs and kisses all around!
Shopping maven Marsha went with me to the mall and helped me find a new suitcase at a bargain price- 50%off!
Then the whole crew took off to an Italian restaurant for a birthday dinner to celebrate Nonna's 83rd birthday, with cake, candles and singing all included. Nonna had two Cosmompolitans during the Happy Hour and had a wonderful time, though she had to go to bed as soon as we got home!

Días de piscina y de compras en Palm Harbor (Tampa)

Hola familia,

Estamos pasando el final de los 4 días de visita a los bisabuelos en Tampa. Han sido unos días muy tranquilos y familiares, recargando pilas para la próxima semana que será movida. El día 19 es la fecha de la operación y María se encuentra bastante bien, creemos que esta vez no habrá problemas en el preoperatorio.

Por las mañanas vamos a la piscina de los bisabuelos, solemos almorzar allí y las tardes las dedicamos a hacer compras, el entretenimiento nacional por excelencia (por detrás del baseball). Las cenas aquí son tempranas, hacia las 7 de la tarde. Después de cenar solemos hacer una salida para acabar de cansar al cuerpo de infantería y que se vaya a la cama sin poner demasiadas pegas. Un poco de tele o de lectura y a las 10 más o menos ya estamos todos acostados porque la mañana siguiente empieza temprano. Aquí ya sabéis que no hay persianas y a las 6 de la mañana entra una luz por las ventanas que casi obliga a ponerse en pie de inmediato.

Mañana volvemos a West Palm Beach, haremos parada en Sarasota para comer con unos amigos de Bilbao que viven aquí desde hace muchos años. Al día siguiente, el 15, mi suegro Don Ángel volverá para España dejándonos un vacío tremendo, todos le echaremos mucho de menos, especialmente las niñas que le adoran.

Besos a todos y seguiremos informando.

Icho.