Surgery Day 2

Diego is recovering a lot faster than doctors expected, his appetite is slowly returning, and he takes all meds by mouth. If he keeps up the good work he may get discharged on Friday. We are keeping our fingers crossed.

This afternoon he smiled for the first time since he went into surgery. Anyone that has spent time with Diego knows he loves to smile so it was a good indication that he is feeling better. He even allowed Mom and Dad to load him into a wagon and pull him around the 3rd floor. It gave him a chance to get out of bed and see other kids. It was a blast for us. We think Diego had fun too despite having a pissed off look the entire time.This evening the parents of Cayden (one of Diego's buddies) called to say they were stopping by for a visit. Cayden also has Arthrogryposis and is being treated at Scottish Rite. They stopped by at 7 pm with dinner for Mom and Dad :) They watched Diego while we ate together in the break room. Afterwards Cayden joined Diego in his crib for some social time. Diego was so happy to have company. Later, we took a few pictures of the boys together. By this time Diego was ready for bed so he didn't smile much.


We want to send a special thanks to Cayden's parents, Brian and Cara. Thank you so much for dinner and bringing Cayden to brighten Diego's day. We hope to see you again in Austin in a couple weeks.

*special note: There are times we feel especially down about Diego's condition. Being here in the hospital helps put things in perspective. Tonight we saw a young girl alone in a room. We waved at her and asked if Diego could pay a visit. She answered "yes" with a big smile. She told us her name is Leti. She is 15 and lives in Dallas. She has been in the hospital for 7 months and has 2 more to go. We were floored! Leti helped us realize how lucky we really are.

Surgery Day for Diego

O'Dark-Thirty. That's the military term for very early in the morning. That's what time it was when we headed back to the hospital. Once in the room we gave Diego an antibacterial bath and put on his cute little hospital gown.
8:45 AM: We were escorted from his room down to Main Surgery. There we met with his nurse Bridgette and the anesthesiologist. They asked us to write 'YES' on his right arm and both feet to acknowledge the surgical locations. He was then given an oral liquid they called "goofey juice". A sedative to calm him before going into surgery. At 9:15 was the big hand off. Mom handed him over to Bridgette. We both kissed him and watched as she carried him off to surgery. That was a tough moment for us. Tougher than we both expected.

10 AM: Update from surgery - Diego is fully sedated and 10 minutes into his foot surgery. Each foot should take 1 1/2 hrs. Hand surgery has not yet started. They will give us another update in 2 hrs.

12 PM: Surgery to the right leg is complete. Diego's surgeon is please with how it came out. He is now starting on the left leg. Surgery to the hand will begin in the next 30 minutes.

12:47 PM: The left leg is complete. Diego's surgeon ,Dr. Birch, was able to get both feet in a correct position for walking. For now Diego will remain in bent-leg casts for 4 weeks followed by straight-leg casts for another 4 weeks. The hand surgery is about to begin.

3:18 PM: We are happy to say that Diego is finally out of surgery. All went very well and he is resting comfortably. We are hoping he will recover quickly so he can start using those new feet and hand :) For now he will remain in the hospital so check back regularly to see how he is doing. We want to thank everyone for their prayers and well wishes.

Per i familiari e amici in Italia.

Diego e’ entrato in sala operatoria questa mattina alle 9:20 ora locale and e’ uscito verso le 14:00. Circa 4.5 ore minuto piu’ minuto meno.

Durante questo periodo di tempo l’assistente chirurgico ci ha tenuto informati dalla sala operatoria sullo stato delle procedure effettuate dalle due equipe’ di medici che hanno operato Diego. Il Dottor John Birch ha iniziato l’intervento al piede destro e poi si e’ spostato sul sinistro. Nel fratttempo il Dottore delle mani (non ricordo il nome in questo momento) ha effettuato l’operazione al polso destro.

Il povero Diego e’ un po’ frastornato al momento. Come potete immaginare l’anestesia generale e’ tutt’ora in effetto. La capo infermiera ci ha avvisati che nel giro di 3-4 ore l’effetto diminuira’ e il dolore potra’ causare sconforto. A quel punto inizieranno a igniettare medicinali antidolorifici via endovenosa e sedativi se necessario.

Diego ha due bei gessi color blu che coprono gambe e piedi, un modello bianco alta moda al braccio destro con tanto di cuscinetto rosa per tenere il braccio alzato e diminuire la possibilita' di gonfiori…scherzi a parte … il poverino ha tutte le estremita’ ingessate con l’eccezione della mano sinistra dove pero’ hanno fissato l’ago per l’immissione dei medicinali via endovenosa.

Inoltre al momento ha la mascherina per l’ossigeno per aiutare con la respirazione e il tubicino per il cateterino; qualche linea di febbre e battito cardiaco un po’ piu’ rapido del normale sono i sintomi che i medici avevano anticipato.

Ci dicono che probabilmente potremo portarlo a casa entro il fine settimana. Tornate a visitare il sito di Diego nei prossimi giorni per aggiornamenti e nuove foto. Nel frattempo vi salutiamo e ringraziamo tutti di gran cuore per i messaggi di conforto e preghiere.

Admission Day for Diego

Today Diego was technically admitted to the hospital in preparation for tomorrow's 9:30 am surgery. Technically because he has a room at the hospital, #312, but they allowed us to take him home with the promise that he will be back in his room by 6 am.

*Note about Home: We have a condo 5 minutes from the hospital. I didn't want people to think we actually drove back to Austin!

Today was a very long day so we are happy to be home. Diego had x-rays taken, blood drawn, met with surgeons, nurses and finally got a room after 5 pm. We did get some good news. His surgery is expected to take 3hrs and not 5 like they first predicted. He may also be out of the hospital within 4 days, not 5. So if all goes well we will be back in Austin by Sunday :)

Here is the hospital information:

Diego Tonelli-Nova Room #312
Texas Scottish Rite Hospital for Children
2222 Welborn St
Dallas, TX 75219
(214) 559-5000
http://www.tsrhc.org/

Preparing for Surgery

It's been a while since we last updated everyone on Diego's condition. He's doing really well thanks to weekly physical therapy. Unfortunately PT is not enough to bring his feet flat. He also has limited range of motion in his right wrist. Both will require surgery which is scheduled to take place on Feb 6th. The surgery will take no less than 5 hrs and require a minimum 5 night stay in the hospital. He will have full length hard casts on both legs and his right arm for 9 weeks. We don't expect him to be a happy camper. Especially during the first 3 days after surgery. We've already been told to prepare ourselves for some long days and nights. We want everyone to know that Diego will be in good hands. His surgeons are some of the best in the world. We are not without worry but know he is getting the best possbile care.

Next week we will post his hospital info(room # and phone) for those that want to send there well wishes. Until then, we hope you enjoy this short little video of Diego laughing it up with Mama :)

Diego goes to Milano!

In Nov. 2007, the family travelled to Mama's hometown of Milan, Italy to visit the family. We all had a wonderful time and everyone was so excited to see Diego. Here are a few photos from our visit.


Ciao a tutti! Finalmente ecco le foto della nostra ultima visita. Scusate del ritardo...mi raccomando scrivete presto. Abbracci e bacioni a tutti.

Merry Christmas!!

Merry Christmas from our family to yours! This is Deigo's first Christmas and we feel blessed to have him in our lives.

Auguri di Buon Natale dalla nostra famiglia alla vostra! Questo e' il primo Natale per Diego e ci sentiamo davvero furtunati e felicissimi di averlo con noi.

Ireland The Final Days

Day 7: The family visited Bunratty Castle. We never actually entered the castle grounds. Instead we visted the gift shop and had dinner at a nearby restuarant. Unfortunately we forgot the camera at the hotel so we have no pictures :(

Day 8: Trip back to Austin. We were upgraded to business class for the London to Chicago leg!! As you can see by the pictures, Diego took full advantage of the upgrade. He was so good during the trip home. It wasn't until the final flight into Austin that he started to fuss.

We were so glad to finally make it back to Texas. The trip was fun but we missed being home!

Random Photos:

• Business Class Deigo
• Inflight Diaper Change
• Family in Flight
• Goodbye Hotel Room View
• Preparing for Travel
• Business Class Floor Traveler
• Rip Van Winkle
• Diego and Bear

Ireland Day 6

So I know what you are thinking, what happened to Day 5? Well, it was bust. Dad worked most of the day as did Mama. It was a day spent at the hotel with no photos taken. Daddy vowed to make up for it on Day 6. So he searched tourist books for a destination. It had to be somewhere away from town, out in the country. He selected the town of Quinn.

Day 6: Quinn was over an hours drive from Limerick. So after the drive to Dell, the boys hit the highway. It was a beautiful day! The sun was out and the temperature was in the high 60s. Perfect for a drive in the country!

About 5 miles outside of Quinn is Knappogue Castle. That was the boy's first destination. The drive up the highway had the typical boring scenery. However exiting the highway to Quinn was another story. There were small roads lined with stone walls thru rolling hills of green pastures. We took plenty of photos but none captured the beauty being there in person. Upon reaching Quinn we followed the signs to the castle. The drive thru town was quick and took us past Quinn's Abbey. We decided to stop there on our way back. It took longer to reach the castle than expected but was well worth the drive.

Unlike King John's Castle, the grounds of Knappogue Castle are vast and surrounded with beautiful scenery. There is a gate near the main road that takes you down a smaller tree lined road to the castle. Reaching the parking area we realized we were the only tourists at the castle. It was hard to believe that such a beautiful place had no tourists. Later we ran into an older couple but for now, the castle belonged to the boys. We spent over 2 hours exploring the castle and its midieval garden. Diego had lunch in the garden. How many babies have lunch in a medievil garden!

Next stop was Quinn's Abbey. We drove back to town and parked at a pub near the Abbey. There was a narrow dirt path leading from the main road to the abbey ruins. It was at least 100 yards long and was not meant for strollers. It also had two stone walls with turn stiles. This meant Daddy had to carry the stroller and baby over both walls. We stayed about an hour taking photos then went back to the pub for a late lunch. After lunch the boys drove back to Limerick to meet Mama for dinner. This was by far the best day of the trip!

• Castle Banquet
• King Diego
• Castle Road
• Castle Entrance
• Castle Tower
• Castle Archway
• Castle Chapel
• Daddy's Shotgun
• Castle Fireplace
• Upper Room
• Iron Chandelier
• Castle Stairs
• Medievil Garden
• Medievil Garden
• Medievel Garden
• Garden Path
• Quinn's Abbey
• Abbey Tower
• Abbey Cemetary
• Abbey Ruins
• At the pub

Ireland Day 4

The goal of Day 4 was to visit King John's Castle. But first, the boys needed to drive Mama to work. So it was up early and down to the lobby. We didn't have directions which meant we needed to follow one of the other cars. That proved to be harder than expected. Traffic to the office was bumper to bumper. At times we would lose sight of the lead car. Losing them meant being lost so Daddy had to drive agressively to keep up. A matter made worse by the fact we were driving on the opposite side of the road in a car with a right side steering wheel. Several brushed curbs, 4 round-abouts and 40 mintues later we arrived safe at Dell. After a short stay the boys headed back to the hotel.

The ride back took longer than expected. However it wasn't long before the boys were back on the streets of Limerick. The weather called for gray skies with light showers. So before leaving the hotel they stopped by the front desk to pickup an umbrella. Having walked to the castle the day before, they were confident enough to leave the main road and take a short cut through a park. A light rain started just as they reached King John's Castle.

Once inside, the boys paid the entrance fee and were given a map. They stayed over 2 hours exploring the castle. They met a nice German couple that offered to take their picture on the castle wall (see below).

Upon leaving the castle the boys headed back to the hotel to rest. A few hours later they were back at Dell to pickup Mama and talk about the day's adventure. We all ended the day with a night time stroll through the city.
Castle Photos:

• Courtyard
• Armory
• Gallows
• Boys on the castle wall
• View from castle wall
• Courtyard North
• Medieval Period Clothing
• Castle Mint
• Archer's Perch
• Steep stairs (no stroller here!)
• Castle wall walkway
• Night's Stroll

Ireland, Day 3

Day 3 started very early. It was Mama's first day at the Dell office. This meant Diego and Daddy would be alone all day. The boys planned to go back to King John's castle and St. Mary's Cathedral. This time with a camera in hand. So after accompanying Mama down to the lobby, we said our good-byes and she departed for the Dell office. The boys then went back to the room and had breakfast. Leaving the hotel turned out to be harder than expected. Probably due to Daddy's inexperience with preparing Diego for a day of site seeing.

It was lunchtime before the boys would make it out of the hotel. Unfortunately it was windy and pouring rain. Daddy had a hard time keeping the rain off Diego who was riding in the stroller. Most parents on the street had a plastic cover fitted over the stroller to protect their babies from rain. So the first task was to find and buy that cover. Daddy asked two sets if parents for information. The first couple responded with possibly the right information but Daddy couldn't understand a word they were saying. The second couple directed the boys to Mother Care baby store. Twenty minutes and 30 Euros later, they were back on the street. The cover worked wonderfully! Diego was dry and out of the wind.

By now the boys were hungry so it was off to the nearest restaurant. They both had a quick bite to eat (a bottle for Diego) and started towards King John's Castle. On the way they found a cool sports store and stopped to browse. Daddy came away with a very cool Limerick Sporting team polo. Once again they started for the castle. It wasn't long before Daddy stopped at another clothing store where he bought a nice sweater. With garments tucked under the stroller, the boys started for the castle once more. They had to pass the cathedral but opted to see the castle first. Finally arriving at the castle entrance, they were shocked to find the doors were locked. They were less than 5 minutes late for the last tour! They quickly turned around and headed back to the cathedral. They couldn't very well go back to the hotel without having accomplished a single tourist task. The cathedral is surrounded by a high wall with a single arched entrance. Entering the grounds, the boys made their way to the side door just passed the cemetery. There are two cemeteries, one in the front and one on the side facing the street. The cathedral was empty except for a man sitting at a small desk near the door. He was there to take our 2 Euro entrance fee. If you have never been to a European cathedral, you will no doubt be impressed with its architecture. Having been to many, Daddy was interested in its history. There is an area off the main hall where tourist can read important moments in the cathedrals history. It begins in the late 1100s and goes on to modern day Limerick.

After browsing and taking pictures, the boys headed back to the hotel. By this time the rain had stopped but it was still windy. Diego remained safe under his new cover. Back in the room Diego napped while Daddy watched the Motocross of Nations. Mama showed up at 6:15 PM with plans for the evening. We would meet other Dell folks in the lobby at 7 then head to an Indian restaurant not far from the hotel. This would be our first Indian restaurant that was not a buffet so we had a hard time figuring out what to order. We basically guessed and ended up with some good but very spicy food. After dinner we all walked back to the hotel where we parted ways in the lobby then it was back to the room. Day 3 had come to an end.

More Pics from the day:

• St Mary's Cathedral
• Cemetery
• Door to enter
• Stained glass window
• Tomb
• View on approach
• King John's Castle view from park

Ireland, Day 2

Day 2 started at a late 12 PM. The goal of the day was to see the Cliffs of Moher. Since it takes 30 minutes for the hotel valet to retrieve our car, we decided to go shopping at a store across from the hotel. Daddy and Diego just browsed while Mama did the real shopping. Forty minutes later we were in our Jeep making the 2 hr drive to Liscannor, a small town near the cliffs. The hotel staff provided printed directions to which Mama insisted we follow. Daddy decided to use his new GPS toy to plot the trip. It wasn't long before we came a point where the directions differed from the GPS. Daddy insisted we follow the GPS route. Five minutes later the GPS had us exiting the highway (N18) at a point where the exit was closed for construction. At that time Daddy decided to use the GPS to get back to the directions provided by the hotel staff. Despite the occasional rain, the drive was very nice. The scenery was rolling hills of green pastures dotted with small towns and farms.

It wasn't long before we reached the parking area near the cliffs. Just as we parked it began to rain. We had no umbrella so we decided to wait in the Jeep until it passed. Mama used the time to feed Diego and change his diaper. Lucky for us the rain passed quickly. We then packed up the stroller and made our way up to the cliff's edge. Wheel chair access made it easy for us to push the stroller all the way to the top. As we approached you could hear the ocean crashing against the cliffs. Once at the top we took in the spectacular view. Our photos do little to capture the feeling of standing at the cliff's edge. We took several pictures from different locations then retreated back to the exhibition center. The exhibition center was very cool. It had a restaurant, gift shop and an area with huge screens displaying photos and facts about the cliffs. We only stayed about an hour then drove back into Liscannor for lunch. There we found a traditional Irish pub where we had 'fish and chips' (very good) then headed back to Limerick.

Once back at the hotel, we went to the lounge where Daddy tried 3 different Irish Whiskys. All very good. We found out the lounge manager was from Italy (Mama's home country). They chatted in Italian and we all discussed our travels and experiences. It all ended at midnight when we retired to our room. Mama went to bed because she had to work at 9 AM the next morning (go to the Dell plant). Diego was wide awake so Daddy pushed him around the hotel in the stroller until he finally went to sleep. Soon he was followed by Daddy.

More pics from the day:

• Waiting for the rain to pass
• Diper change in the car
• Diego the lil cutey
• Family at the cliff
• Cliff View
• Cliff View
• Cliff Tower
• Mama & Diego at the Tower

Diego in Ireland!

After much anticipation, Diego's first overseas trip is underway. It started with a flight from Austin, TX to Chicago, IL. We had a very long 6 hour layover in Chicago followed by a 6 1/2 hour flight to Shannon, Ireland. Finally we drove our rental car from Shannon to Limerick which is where we'll be staying for the next 7 days. Diego has been a wonderful little traveller! He even received compliments for being "such a good baby" from other passengers.

We arrived at the Limerick Marriott at approximately 9 AM. The hotel here is very nice and in close proximity to shopping and many restaurants. Exhausted from the trip, we cleaned up and took a nap. By 3 PM we were out on the streets of Limerick. The plan was to get a few items we forgot to pack, grab something to eat then checkout the local scene. The weather was a pleasant 65 degrees and partly sunny. It was also a little breezy so we stopped at a local store to pick up a hat for Diego (pics coming soon). Later we stopped for lunch at an Italian Ristorante. After lunch Daddy used his Blackberry GPS to plot a 4 mile trek to King John's Castle, St Mary's Cathedral, Hunt Museum then back to the hotel. It was a nice little walk with plenty of shops to browse along the way. Some streets were paved with stone which made for a bumpy stroller ride but Diego took it all in like a seasoned world traveller, always sitting up to check out the new sites and sounds. Getting back to the hotel, Diego had a bite to eat and was soon fast asleep. His first travel day is nearly over. We'll have to see what the evening brings.

Eccoci qua!

Ciao a tutti amici e famiglia! Siamo mortificati per non avere scritto da oltre 2 mesi!!! Non ci sono scuse ma solo il fatto che siamo stati occupatissimi e a volte diciamo la verita' pigri :)

Dunque molte novita' da dirvi. Da dove iniziare...vediamo..ah..Diego e' andato in campeggio in Luglio con altri bimbi affetti da AMC - ha fatto nuove amicizie e mamma e papa' sono adesso in contatto con altri genitori con cui possono scambiare esperienze e consigliarsi sulle diverse terapie.

Siamo anche andati all' annuale Conferenza Nazionale per bimbi con AMC. Si e' tenuta in Arlington, Texas durante un fine settimana in Luglio - qui abbiamo incontrato famiglie venute da diverse parti degli Stati Uniti per scambiarsi informazioni su questa rara condizione e metodi di miglioramento. Qui abbiamo conosciuto Connor, un bimbo di 2 anni, che ha avuto 7 operazioni per migliorare le condizioni ortopediche causate da AMC. Tra le varie operazioni, Connor e' stato sottoposto al trapianto dei muscoli bicipidi e 'rilascio' dei gomiti...adesso puo' piegare le braccia da solo!!! La prima volta che Connor si e' messo le dita nel naso la sua mamma Amy l'ha immortalato con una miriade di fotografie!!! Amy ci ha dato il nome e telefono del chirurgo che ha operato Connor; si trova in Oklahoma City. Non abbiamo ancora fissato un appuntamento perche' Diego e' ancora troppo piccolo..hey in proposito...abbiamo festeggiato i 5 mesi il 5 Agosto con una bella festa e Diego e persino andato in piscina per la prima volta (adora l'acqua)...ma non appena Diego ha 8-9 mesi andremo a trovare questo chirurgo per vedere se Diego puo' sottoporsi allo stesso tipo di trapianto muscolare. Ecco una foto di Connor e Diego.

Abbiamo visto un medico da New York City di nome Van Bosse il quale ci ha consigliato di non aspettare ad operare i piedini di Diego come originariamente consigliati dal Dr. Birch ma di eseguire il 'rilascio' dei tendini il piu' presto possibile! Abbiamo un appuntamento con Dr. Birch il 6 Settembre...non vediamo l'ora di discutere le informazioni che abbiamo ricevuto dal Dr. Van Bosse. Abbiamo anche parlato con genitori di bimbi che hanno il problema dell'anca dislocata e tutti ci hanno detto di pianificare l'intervento il prima possibile. Parleremo al Dr. Birch anche di quello.

Altra novita' e' che abbiamo acquistato un appartamento a Dallas vicino all'ospedale Scottish Rite cosi' adesso non dobbiamo piu' stare in albergo ma possiamo ritirarci nel nostro piccolo bilocale - e' minuto ma carinissimo e perfetto per noi. Hey adesso vi possiamo ospitare in Dallas se doveste venire da queste parti :)

Ultimissima novita' e' che stiamo facendo il passaporto per Diego cosi' possiamo andare in visita in Italia. Mamma deve andare in Irlanda per lavoro a fine Settembre cosi' si e' pensato di approfitarne per andare a trovare i nonni e parenti a Milano. Se riusciamo a fare il passaporto in tempo papa', mamma e Diego andranno in Irlanda e poi in Italia insieme. Speriamo di farcela...vedremo.

Ah..proprio oggi ci ha chiamato il papa' del piccolo Lincoln (e' nato il 7 Febbraio 2007..solo 1 mese prima di Diego) ed e' anche lui affetto da artrograposi...ebbene Lincoln ha avuto la sua prima operazione questa mattina a Scottish Rite - siamo andati a visitarlo visto che siamo in Dallas questo fine settimana per la regolare terapia ai piedi e ginocchio - Lincoln ha avuto cio' che chiamato il 'rilascio' dei tendini in entrambi i piedini. Adesso ha un gesso sulle gambe che deve indossare per 6 settimane poi vedranno i risultati e determineranno se ulteriori gessature sono necessarie. Il medico ha gia' pero' annunciato a mamma Amy e papa' Larry che Linconl dovra' avere un altro piccolo intervento al piede sinistro in quanto oltre ai legamenti c'e un altro problema ma sicuramente risolvibile! Linconl era sveglio e vispo quando siamo andati a trovarlo...e' veramente sorprendente come questi bimbi reagiscono alle piu' difficile situazioni mentre i genitori sono un completo disastro!!! Ecco una foto di Linconl e Diego (prima dell'operazione di Linconl)

Questo sito e' per il papa' di Valerio, non riesco piu'; a trovare il tuo indirizzo mail ma quando siamo andati alla Conferenza ho domandato di bimbi con doppia anca dislocata e anche se controversia ancora esista sembrerebbe che i medici iniziano a consigliare di operare perche' a lungo termine si sono visti miglioramenti. Ecco un articolo che mi hanno dato http://findarticles.com/p/articles/mi_qa3794/is_200406/ai_n9425242

Spero che il papa' di Valerio legge questo messaggio :)

Saluti a tutti e un bacione grande da Diego :)

Promettiamo di aggiornare il sito piu' frequentemente :)) scriveteci se potete.

Scottish Rite Update

We've been slacking on our updates to the blog and have been getting a lot of requests for more information. We apologize for not posting sooner. Indeed a lot has happened since our first visit to Scottish Rite Hospital in Dallas.

April 12th was our first visit to Scottish Rite. Upon meeting with the physicians and physical therapists, it didn't take long for us realize this was a special place. We felt they genuinely cared about Diego and wanted to do everything they could to make him better. It also felt good to finally meet people that knew more about Arthrogryposis then we did! Best of all they wanted to begin treatment immediately which is how our 1 day visit turned into a 2 week stay!! Of course we were not prepared for an extended stay but were willing to do whatever it would take to get Diego the best possible care.

The timing for our two week stay couldn't have been better. Mom was still on maternity leave and had two weeks remaining. Dad was worried that his job in Austin would require him to be without his family for two weeks. Instead, the management at his employer, Dell Inc, understood the situation and allowed him to work remotely the entire time. The final blessing came from the wonderful folks at Scottish Rite who provided us a room in the hospital free of charge. We couldn't have asked for more!

Diego's treatment began later that afternoon which was virtually the same everyday. Twice a day he had physical therapy and every afternoon we was fitted with custom leg splints. The splints were held in place with Velcro that came in several colors. Some days he was yellow, red, black, blue and so on. With matching outfits he was making quite the fashion statement.

By the end of 2 weeks, Diego showed great improvement while Mom and Dad were feeling ill from the effects of eating out everyday. We were both ready to go home but needed to decide on future treatment. We could either followup with a physical therapist in Austin or make the 5 1/2 hour drive every week to Scottish Rite. There's was no doubt we would stick with Scottish Rite.

Fast forward to today. Every Friday we make the 5 1/2 hour trip to Dallas. We've been doing this now for over 7 weeks. To help with work, Dad purchased a mobile networking plan that allows him to work remotely from the car. Mom is back to work and routinely takes conference calls during the trip. Our SUV has become our part-time office on wheels! It's hard at times but well worth it. Diego continues to respond well to treatment. So far we've gone from weekly soft cast to hard casts then back to soft casts and now splints. Most of the work has been focused on his legs and feet. On June 14th we will go back to Dallas to meet with the hand team at Scottish Rite. We've been told he will see the best had surgeon in the world. We look forward to meeting the team and feel blessed to have access to such accomplished physicians and staff.

We'd like to say Thanks to our friends and family for all your support. A Special thanks to Ian Benoist and Micheal Clark, Dad's managers at Dell. You guys have been great!

Diego Photos

Here are some past and present photos of Diego

Mamma torna al lavoro!

Lunedi' 30 Aprile 2007, Diego ha esattamente 8 settimane e oggi mamma torna in ufficio! Maternita' negli Stati Uniti e' solo 2 mesi ... fortunatamente la nonna paterna e' qui e si prendera' cura di Diego visto che non vogliamo mandarlo al nido...almeno per ora.
Diego ha entrambe gambe e piedi ingessati. Andremo a Dallas tutti i venerdi' per le prossime 6-8 settimane a cambiare il gesso.
Diego pesa 4.4 Kg ed e' lungo 56 cm. Inizia a fare smorfie e suoni strani con la bocca...sembra avere un bel caratterino :)

Prima visita all'ospedale Scottish Rite di Dallas

Mercoledi' scorso siamo arrivati a Dallas con grosse speranze per Diego. La prima visita con la squadra di medici ortopedici all'ospedale Scottish Rite e' stata Giovedi' scorso alle 8:00 precise. Scottish Rite e' un centro specializzato in ortopedia per bambini da 0 a 18 anni.
Il primario che ha in cura Diego si chiama Dottor John G. Birch. Questo medico e' uno dei pochi negli Stati Uniti che ha considerevole esperienza con neonati affetti da artrogriposi. Dottor Birch e' affiliato con l'Associazione degli Studi e Metodi Applicativi di Ilizarov in Italia (ASAMI-Italia); qui la sua biografia http://www.tsrh.org/m_orthopedicsstaff.cfm#birch sul sito dell'ospedale.

Dopo aver pesato e misurato Diego...quel giorno pesava 3.8 Kg ed era lungo poco piu' di 50 cm...due medici collaboratori del Dottor Birch hanno visitato Diego e analizzato attentamente le radiografie, ecocardiogrammi, e altri risultati di esami effettuati a Diego praticamente dalla nascita che abbiamo portato con noi a Scottish su richiesta del Dottor Birch.
Dopo di che' i medici si sono ritirati per consultare tra di loro e rivedere i dati con il primario.
Nel frattempo Diego ha incontrato altri membri del personale, includendo infermiere specializzate, terapisti fisici e occupazionali; fra questi voglio menzionare Heather la quale ci ha messo in contatto con altre famiglie che hanno bimbi affetti da artrogriposi e che vivono nelle nostre vicinanze. Heather ci ha anche invitato a partecipare ad un evento chiamato "Camp Just Like Me" che si svolgera' dal 20 al 24 Giugno a Peaceable Kingdom (il Regno della Pace) per bambini da 5 a 18 anni di eta' affetti da artrogriposi http://www.peaceablekingdomretreat.com/custom/summer_program.html
Naturalmente Diego e' troppo piccolo per partecipare a questo tipo di vacanza estiva, ma i bambini di eta' inferiore a 5 anni e i loro genitori sono invitati a spendere un giorno insieme ed incontrare gli altri bambini piu' grandi e genitori. Noi pensiamo di andare ma ne riparleremo piu' avanti...ritorniamo a Giovedi' scorso...

...finalmente verso mezzogiorno Diego incontra Dottor John G. Birch e i suoi collaboratori! Un'occhiata veloce a Diego dalla testa ai piedi e ci viene data una dettagliata descrizione delle caratteristiche riscontrate in Diego e severita' di ognuna. Come precedentemente diagnosticato dal medico genetico in Austin ci viene data conferma che Diego e' affetto da Amioplasia che e' il tipo piu' comune di Artrogriposi. Allego un articolo degli studi effettuati da genetisti famosi americani e statistiche sui casi studiati...come potete notare non molti... http://www.aidweb.org/articoli_detail.asp?IDRecord=97

Ad ogni modo, su raccomandazione del Dottor Birch, andiamo al quarto piano a visitare la sala dove Master Physical Terhapists (MPT) si prendono cura dei piu' piccoli con problemi agli arti inferiori. Da qui' ci suggerisce di passare le prossime 2 settimane a Scottish Rite di modo che Diego possa essere sottoposto a Terapia Fisica Intensiva degli arti inferiori da esperti terapisti con esperienza con questa rara patologia, e analizzato da un gruppo di esperti degli arti superiori. Detto e fatto! Il giorno dopo Venerdi, siamo rientrati ad Austin per sistemare Rocky (il cane) da amici, fare la biancheria e praticamente rifare le valigie per tornare indietro a Dallas il Lunedi' mattina. Da notare che mamma e' ancora in maternita' (rientra al lavoro il 30 Aprile) mentre papa' Joseph ha richiesto ed ottenuto di poter lavorare remotamente cosicche' entrambi possono seguire le cure e i progressi di Diego!

Diego ha due appuntamenti giornalieri con le terapiste; le tecniche usate sono una combinazione di gessature leggere, 'taping' o fasciatura (tecnica importata dalla Francia) e naturalmente tanta ma tanta terapia fisica che include esercizi e massaggi. Inoltre, domani verra' sottoposto a iniezioni di Botox sul muscolo quadricipide destro per consentire ai terapisti di piegare piu' facilmente il ginocchio e portare la rotula nella corretta posizione. La malformazione ai piedi di Diego sono stati categorizzati di livello severo (in scala da 1 a 20, il piede destro e' 15 e il sinistro 16). Domani abbiamo appuntamento con la Dottoressa Marybeth Ezaki e i suoi collaboratori specializzati nel trattamento degli arti superiori, mani in particolare - qui la biografia http://www.tsrh.org/m_orthopedicsstaff.cfm#ezaki

Scriveremo di nuovo nei prossimi giorni con le altre novita' - aggiungeremo anche delle nuove foto (oggi non c'e' proprio tempo)...ah quasi dimenticavo - Diego oggi pesa 4Kg giusti! Il pupo cresce ed e' un buon segno.

Prayers Heal the Heart

On April 6th we took Diego to see his cardiologist, Dr. Patt. Diego first met the doctor while in NICU. It was there following an echocardiogram that he was diagnosed with VSD. At that time a decision was made to wait 4 weeks to allow his heart to mature. We would then perform another heart scan to determine how to proceed with treatment. Until then any surgeries to correct his limb contractures would have to wait so this particular visit was very important to us.

The meeting with Dr. Patt began with a summary of what he found in the earlier scan. It was during that meeting that Dad asked if the hole in Diego's heart could close on it's own. According to Dr. Patt, holes in this location do not typically close on their own and require surgery. Shortly after our initial visit, we moved to the ultrasound room for his echocardiogram. The procedure lasted about 20 minutes during which Mom helped to keep Diego calm while Dad looked over the radiologist's shoulder. Having seen countless heart scans up to this point, Dad knew where to look to find the hole. However this time he was having trouble locating it. He asked the tech where it was but did not get a response. He figured the tech did not hear the question and decided not to bother him any further. Following the procedure we moved back to the exam room to wait for Dr. Patt's review of the results. It seemed like forever before he finally showed up with the news. Diego's heart had healed on it's own!! His VSD was gone!!

We feel truly blessed that our prayers and those of friends and family have been answered. Now we can prepare for our visit to Scottish Rite and focus on his orthopedic treatment.

Buona Pasqua

Finalmente delle buone notizie! E' con grandissima gioia che comunichiamo a tutti che Diego ha passato il controllo cardiologico a pieni voti. Ieri siamo andati a fare un altro ecocardiogramma e il dottore ci ha informati che, come sperato, il difetto al setto ventricolare (praticamente un buco nel muro ventricolare del cuore) si e' chiuso da solo! Il cardiologo aveva predetto questa come una possibilita' anche se non la piu' probabile. Il chirurgo ortopedico, Dottor Prince, aveva dubbi nel pianificare le operazioni chirurgiche correttive per Diego, proprio per le condizioni instabili del cuore e i rischi sottoposti dall'anestesia. A questo punto i rischi sono fortemente diminuiti e possiamo concentrare le nostre energie unicamente sul trattamento ortopedico includendo possibili interventi chirurgici.

La settimana prossima andremo all' ospedale Scottish Rite in Dallas dove un gruppo di dottori altamente specializzati in ortopedia infantile e con esperienza nel trattare bambini con artrogriposi faranno un controllo completo alle condizioni del Diego e ci guideranno sui possibili trattamenti e tempi di esecuzioni.

Vi terremo aggiornati sui risultati della visita a Scottish Rite. Nel frattempo ne approfittiamo per augurare a tutti una serena e gioiosa Pasqua. Carissimi abbracci da Diego, Joseph e Romina.

Knee Ultrasound Day

Today Diego had his left knee ultrasound performed at Dell Imaging center at Austin's Children Hospital. His Orthopedic surgeon, Dr. Prince, met us at the clinic to view the results. Earlier that morning we removed his soft cast while at home. Being a soft cast it came off pretty easy. We just unraveled it like you would a roll of tape. Only in this case it is 2 inches wide and looks like burlap. The results showed his knee is in a good position to continue casting but we decided to leave the cast off until he meets with the doctors at Scottish Rite Hospital. We will decide how to proceed following their evaluation.
The day before Diego met with Cindy his physical therapist. It was his first full session with her. Together they worked on the stability ball and did various stretching exercises. We learned a lot and will be working with him everyday at home.

We are all set for his trip to Dallas. We reserved a hotel near the hospital and will be staying for two nights. While in Dallas he will meet his grandmother for the first time (Dad's mom). She will accompany us back to Austin and will care for Diego during the day when mom goes back to work.