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!









- Posted using BlogPress from my iPad

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.

Four generations!

Here we are all together,four generations of DiGiacomos. Maria, Patty and Paula are fascinated with Nonna and Nonno, and the fact that they are My parents.
We spent the morning at the community pool,and the afternoon in the local library, and the girls feel very much at home already. And what better way to end the day than a big Carvel ice cream cone?

Traveling

We've spent the day on the road,going from Palm Beach to Tampa. But first we stopped off for lunch in Orlando, with my old friend and former ASB Kindergarten teacher, Jane Ballard. She received us with a true Basque welcome, including an Athletic de Bilbao flag hanging on her tree! She looks as fantastic as ever, she never seems go get older. And her house is just beautiful, with views of a lake. After an "aperitivo" there, we all invaded a local Mexican restaurant, where Jane and I caught up on all our "news".  A good time was had by all.
Then on to Tampa and "Nonno and Nonna´s" house where lots of surprise gifts were waiting for the girls, including a grand welcome from the alligator in the backyard lake, who lifted his head up out of the water just to greet us!  Some exciting days await us.

El Ratoncito Pérez llega a West Palm Beach

Buenas noticias,

El Ratoncito Pérez ha llegado por fin para retirar el primer diente de Patricia, dejando 2 dólares como recuerdo de su paso.

Os dejo una imagen de la protagonista.

Un saludo desde Tampa (ya estamos en casa de los bisabuelos).

Icho.

Patty (finally!) has lost her first tooth- six months after her sister! Since she isn´t in Spain, the tooth fairy has had to take over and bring her prize- two one dollar bills!!!!

New date!

Good news! This morning the hospital informed us that Maria's operation has been rescheduled for July 19. Now all we have to do is keep her healthy, which is not easy considering the hot muggy weather and the freezing air conditioning in the stores and malls!

Nuevas fotos

Os dejamos unas fotillos de los últimos días, las 3 primeras en el hospital. En la última veréis a las niñas con un osazo y unos globos que mis compañeros del BBVA nos enviaron el día 6 de julio, para animar a María el día de la operación. Un detallazo de primera.

Besos a todos.

19 de julio nueva fecha para la operación

Buenos días,

Nos acaban de hacer un hueco para la operación de María para el 19 de julio.

Esperemos que de hoy al día 19 de julio ya no haya rastro de la dichosa tos de Maruchi.

Mañana domingo nos vamos a Tampa a pasar 4 días con los bisabuelos.

Seguiremos informando.

Besos fuertes.

Getting better

Today Marichi went back to the doctor, who said he thought she was improving - very good news! He even said she could swim in the pool, which is a blessing considering it is about 35 degrees! The weather has been hot and muggy, with intermittent thunderstorms, but we still manage lots of pool time which the kids love.
In the meantime, we are waiting to hear about a new date for the operation hopefully soon. Keep your fingers crossed!

Compás de espera

Hola a todos,

Hoy es viernes 8 de julio y hemos ido a ver al pediatra de nuevo, para ver la evolución de la tos de María (el diagnóstico es bronquitis pero me parece algo exagerado). Nos ha dicho que escucha mejor sus pulmones y que tiene menos flema que hace un par de días. De todas maneras María tose de vez en cuando y cada vez que lo hace se nos pone el corazón en un puño. No porque le pase nada, sino porque parece que es algo que puede dilatarse en el tiempo y, lo que es peor, ser juzgado por la anestesista como invalidante para meterla en quirófano. De todos modos, esperemos que en los próximos días remita completamente la tos.

Por otra parte, esperamos la comunicación del Dr. Paley para ver cuándo nos puede hacer un hueco en su agenda para programar la operación. No os podéis imaginar lo ocupado que está, conseguir cita con él es cuestión de meses y no digamos hacer encajar una operación compleja como la de María.

Seguimos informando, lo cierto es que ahora nos dedicamos a descansar y mantener a las niñas con actividad, piscina, biblioteca, columpios... En unos días nos iremos a Tampa a ver a los bisabuelos, seguramente por un período de 4-5 días.

Un beso y muchas gracias por el apoyo de todo el mundo, hemos recibido decenas de correos y de comentarios de todos vosotros y lo agradecemos profundamente.

Icho & familia.

Exploring the territory

Today the kids spent the morning at a Playmobil FunPark-the admission price was 94 cents!They had a great time,while Angel and I explored the area stores. We found a fantastic fish store and a Barnes and Nobles, all in a very close radius of the house. But the highlight of the day was a visit to an Apple store,where I bought an iPad 2!!!!!In fact, I am writing on it right now! But it is a bit disconcerting to see my six year old grandaughters using it with much more ease than me!

Keeping busy

What better way to spend the day and keep the kids happy and occupied-  we all went to the Palm Beach Public Library!  I became a member of this beautiful, complete facility, and am able to check out fifty (!) items at a time!  Ten videos for the kids, ten for the adults, books, magazines, etc!  A treasure trove! We got there just in time for the kids to go to a story hour and craft session, while the adults read today´s papers, and browsed to our hearts content.  We will be regulars there- and the price is right!!!
Maria has begun her course of antibiotics and already we notice an improvement in her cough- only nine more days to go! 
We have been receiving lots of love and messages from you all, thanks for all your support!

Día de sorpresas y cambio de planes

Hola a todos,

Ha habido un cambio de planes en la planificación del tratamiento de María. Hoy hemos ido a hacer el preoperatorio y hemos pospuesto la intervención porque María tiene catarro y la anestesista dice que no quiere correr ningún riesgo y que debemos esperar para operarle, al menos 15 días. Eso por un lado.

Por otro lado, hemos estado de revisión con el Dr. Paley. Hemos hecho 3 RX y hemos visto la resonancia magnética que le hicimos a María el pasado 10 de junio. El Dr. Paley ha visto que la cadera de María tiene mejor aspecto que el que esperaba, parece que tiene una cabeza femoral redondeada y bien formada, por lo que entiende que hay que intentar salvarla a toda costa. Con un 90% de posibilidades le va a realizar una intervención en la cadera llamada 'Super Hip 2'. Esta intervención supone una reconstrucción de la cadera con el fin de obtener una cadera lo más parecido a una cadera normal. Son buenas noticias para la cadera de María pero supone un trastoque serio de planes de futuro, porque realizar el 'Super Hip 2' implica que este año no podemos realizar el alargamiento femoral (3 fases, espaciadas 3 años una de la otra).

Así que seguramente en unos 15-20 días le reconstruirán la cadera y le pondrán un fijador por un tiempo aproximado de 4 meses. Deberemos permanecer en EEUU un par de semanas para ver la evolución pero pasado ese tiempo nos volveríamos a España porque no hay que realizar ningún proceso de alargamiento. Pasados 4 meses volveríamos a EEUU para la retirada del fijador, y en verano de 2012 comenzaríamos con la primera fase de alargamiento.

En fin, que una posibilidad muy remota parece que se va a convertir en realidad y habrá que rehacer los planes de futuro. Serán más estancias en EEUU, más tiempo de fijador... pero Dr. Paley opina que esa cadera tiene futuro y que hay que luchar por ella.

Mañana os cuento más, ha sido un día agotador como os podéis imaginar.

Besos, Icho.

MARIA´S OPERATION POSTPONED!

What seemed like a slight summer cold has changed our plans completely! Yesterday we went to the hospital for Maria´s pre-op, and the anasthesiologist (?) decided that they could not operate until it was cleared up.  A two to four-week delay!  You could imagine how disconcerted we all were, but what could we do?  When she actually went to a pediatrician to treat her "cold", she was diagnosed with bronchitis!!!! She hadn´t even had a fever or complained of anything!  We felt terrible...

In the meantime, Dr. Paley (her doctor) wanted to see her anyway and to check-out her latest MRI´s . The amazingly good news, was that he could see better hip-bone formation than last year, and considers that there is a possibility that he can do a special surgery called Superhip 2 (that he invented) on her, instead of the alternate surgery he had originally planned for her.  Of course, until he actually opens her up, he can´t know for sure.

So what does this all mean?  Well, Superhip 2 would give her a greater possibility of a stable hip, normal gait and less limp, and of course, would be the better option. HOWEVER, if she has Superhip 2, she will not be able to do her leg-lenthening until NEXT SUMMER!    So we probably wouldn´t have to stay for four months....
BUT ON THE OTHER HAND, if Dr.Paley decides that he can´t do Superhip2 on her, we will follow with the original plans, leg-lenthening included, which, with the delay with her bronchitis, would take us over the four months...

Right now, we are tentatively looking at an operating date in about two weeks, IF the infection is all cleared up.

Lesson learned- BE FLEXIBLE!  We are learning, albeit the hard way!

So, we are planning to use our free days well, and go visit my parents in Tampa and other excursions.  After all, we are on vacation!

Last night my old friend Jane Ballard (former ASB Kinder teacher) called me, and I hope we can get to see her, maybe on our way to Tampa, as she lives in Orlando which is on the way.  She was a great shoulder to cry on last night- thanks Jane!

To all of you who sent their best wishes and prayers for Maria´s operation - save them and keep them coming!

We´ve been busy....

We´ve been having some very busy days. Our flight to Miami went well, though it was long as we flew via Lisbon- a four-hour layover there, that we spent in the VIP lounge, thanks to Angel´s Priority Pass.  The girls had a great time there- not so sure about the other people!
We finally arrived at our new home in West Palm Beach around midnight and we all went straight to bed.  The next morning we were happy too see that the house was very cozy and had a great pool, overlooking a lake, full of birds and other wildlife.  Every morning we find frogs and iguanas in the porch and even in the pool! But it´s great to be able to take a dip whenever we want.  The weather has been very tropical, hot and humid and prone to thunderstorms.  But we have had enough sunny hours to enjoy the outdoors.

We are busy exploring all the shops nearby, lots of malls and Targets, etc.  We found a gorgeous mall, The Gardens of Palm Beach, full of Gucci, Prada, Tiffany´s etc.  Fun to walk through but personally I prefer to buy in Target!

Our hours are still a bit mixed up- the girls having been waking up at 4 am, so by 10 am we are ready for lunch!  Yesterday we all went to mass (St. Ignatius Church- I guess in honor of us Basques) at 8:45 am! But slowly, we are getting into the swing of things. 

Today is the 4th of July, and we all went to the beach, about 10 min. away.  We arrived by about 9:30 and got home by 12:30- just when it began to pour!  We had a great time, though Maria didn´t want to get sand on her feet- rather difficult!

Hopefully the storm will pass for us to have a typical July 4th barbeque on the porch this evening.  We hope to join our new neighbors on the lake shore to watch fireworks tonight- if we manage to stay up past 9pm!

Enjoy the pics that Icho has posted.

Bienvenidos al clima de Florida

Ya estamos de vuelta de la playa, hemos estado de 10 a 12:30 más o menos, el sitio fabuloso, la playa de Singer Island, al ladito de los hoteles Hilton, Marriott y Ritz Carlton, ¡casi nada al aparato!

Ha empezado a chispear cuando volvíamos al parking y ahora está cayendo el diluvio universal.

Welcome to the tropical climate!

Os dejo unas pruebas gráficas de lo que os comentamos.

¡¡¡Hoy es 4 de julio!!!

Feliz 4 de julio para todos, como sabéis, fiesta nacional aquí.

Son las 8 de la mañana y ya estamos casi preparados para irnos a la playa, vamos a intentar ir a la zona de Singer Island y Howard Beach, en la zona de playas de Palm Beach, un auténtico paraíso.

Luego os contamos.

Besos.

Fotos de casa

Poolside in our rental home / Al lado de la piscina de nuestra casa

Maria's story

My daughter Diana gave birth to twin girls on June 23, 2005, Maria and Patricia. Both were beautiful and healthy, as well as intelligent (we could tell!). But Maria had a congenital malformation, known as pffd (proximal focal femur deficiency). Basically, she had almost no hip-bones and her femur was severly stunted on her right side. Subsequently, her tibia and foot, which were normal, jutted out from where her hip/femur should have been. And of course, her leg was about half as long as her good leg.

Though she was fitted with a prosthetic leg and foot as soon as she began to walk, and has led a normal life (she runs, climbs, rides a bike, etc) her parents investigated possible remedies for her and after much research and soul-searching, have decided to take her this summer to Dr. Dror Paley in West Palm Beach Florida. There he will operate on her to set her hip and then begin a four-month process of leg-lenthening.
The process consists of breaking the femur bone continually, forcing it to create new bone as it heals. Hopefully it will grow 6-8 cm. during these four months. To help us all get through this experience, Angel and I, as well as Diana, her husband Icho, and Maria, Patricia and little Paula, will all go together to West Palm Beach on July 1. We have rented a house with a pool and hope to create a “family holiday” atmosphere.

Angel will stay for two weeks only and then hopefully return in Oct. for a week or so. Icho will stay until Sept. 9 and then go back to Madrid with Patty and Paula. Diana and I will be with Maria until the end.
This blog is to keep all my friends and family informed of her progress and about our adventures in Florida.

If I´ve sent this link to you, consider yourself in the group!

Welcome to Marichi in Miami…

La historia de María

El 23 de junio 2005, mi hija Diana dió a luz a mellizas, Maria y Patricia. Las dos eran guapísimas y sanas, y muy inteligentes (se veía claro!). Pero Maria había nacido con una malformación congenital, pffd (proximal focal femur deficiency). Quiere decir que le falta hueso en la cadera y un femur atrofiada en su lado derecho. Su tibia y pie, los dos normales, salen de donde su cadera/fémur debe estar. Y consequentemente, su pierna es corta, mas or menos la mitad de su pierna buena.

Aunque Maria lleva una vida normal, con una pierna prostética, y puede hasta llevar bici, sus padres investigaron posibles soluciones para ella y después de mucho buscar, han decidido llevarle este verano al Dr. Dror Paley en West Palm Beach, Florida. El le operará (el 6 de julio) para fijar su cadera, y empezar un proceso de cuatro meses de alargamiento del fémur. El proceso consiste en romper el hueso continuamente,
provocando el crecimiento de hueso nuevo. Se espera un crecimiento de unos 6-8 cm. durante estos cuatro meses.

Para ayudarnos en esta experiencia, Angel y yo, Diana, su marido Icho y Maria, Patricia y Paulita iremos juntos a West Palm Beach el 1 de julio. Hemos alquilado allí una casa con piscina y esperamos crear un ambiente de "vacaciones familiares". Angel solo se quedará dos semanas y luego espera volver en Oct. para una semana. Icho se quedará hasta el 9 de sept. cuando volverá con Patty y Paula a Madrid.  Diana y you estaremos con Maria hasta el final (31 de oct.?)

Este blog is para mantener a todos nuestros amigos y familia informados sobre su progreso y sobre nuestra aventura floridiana.

Si has recibido este link, considérete dentro del grupo!

Bienvenido a Marichi in Miami!

Editores del blog / Blog editors

Hola a todos / Hello everyone,

vamos a empezar a trabajar en este blog. Tendremos dos ediciones, en español y en inglés.

Para la parte española estarán Icho y Diana, los padres de María.

The English version will be written by Elvira (Maria's grandmother).

Hope you will enjoy this blog.