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 :(
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.
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.
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.
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.
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.
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! 
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.
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!
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.
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.
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.
Hi everyone! It has been a while since our last post...we have been busy busy busy and only now finally got some time to post a status of Diego's treatments.
Ciao a tutti in ascolto. Baby Diego sta lentamente abituandosi alla sua nuova casa con mamma e papa'. Mangia, anche se a volte a fatica, e dorme come un angioletto.
Diego has been home 2 days now and we have enjoyed learning to be parents. His first night home we got very little sleep thanks to the hospital's rigid eating schedule. We made it thru the night but by morning we were pretty worn out. The second night went much better. He slept from 11:30 pm to 5:30 am. When he woke up he was very hungry and ate all his breakfast. During the day he was either sleeping or eating and did not fuss at all.
Let us begin by saying we are totally exhausted! Our night in the Rooming-in room went extremely well for Diego. As for us, we were up every 3 hrs for at least 1 hr all night. At each feeding we recorded the amount of milk he drank, weighed his dribble bibs using a digital scale to figure what he lost, changed his diaper, burped him, took his temp and put him back to sleep. It was rough but well worth the result. At 5:30 am Diego's NICU nurse came into the room to take his weight. He gained over 2 oz while under our care! Words can not express our level of happiness knowing that Diego was finally coming home! All that was left was 10 am meeting with his physical therapist. She met us in the room and taught us how to stretch Diego's contracted joints. Something we needed to do this daily to increase his range of motion. Following the PT meeting Diego was moved back into NICU and we moved out of the room and put our things in the car. We went back up to discharge Diego but were told he still needed a hearing test and his nurse was busy working with other babies. We would have to wait another hour! We decided to have a late lunch at a nearby restaurant to pass the time.
Since having his feeding tube removed, Diego continues to eat well and is gaining weight. We are now starting to feel like he will be coming home soon. It is a wonderful feeling! These last 7 days have been an exhausting and frustrating experience and all we want to do is take our baby home! Before we can do that we need to spend a night in the 'Rooming-In' room. This is a room just outside the NICU where babies can stay overnight with their parents. We will stay there 1 night keeping a log of Diego's feedings, potties and body temperature. This is the last major test before taking him home. If we show that Diego can eat and gain weight while under our care he will most likely be released the following day. So tonight at 7:30 pm we will move into the Rooming-In room and spend our first night together as a family.
Romina was cleared for discharge. Unfortunately Diego will remain in NICU until he is able to drink 50ml of milk every 3 hours for 2 days in a row. There are exceptions to the rule but that is the norm. Although Romina will be officially discharged this afternoon, we are keeping the hospital room to remain near Diego. The room was provided to us thru Seton's Nesting program. It is a service that provides rooms to Parents with children in NICU. It is dependent on space so if the Labor & Delivery area fills up we will have to leave. Our other option is to stay across the street at the 'League House'. It is similar to Nesting but is off campus and charges a small fee of $15 per night.
Good news! Today we received the unofficial results of the MRI scan. It was considered unofficial because it was presented verbally and not yet written up by the Neurologist. The scan did not show any brain or nervous system abnormalities. That was a huge relief to hear because doctors were concerned that his brain or nervous system was unable to communicate to his muscles. These results mean Diego is 100% mentally intact. He just has a few twisted limbs ;) Speaking of which, he received the first soft cast on his right leg. Eventually both legs will go thru weekly cast changes but for now they are concentrating on the one that needs the most work. Later additional work will be done to straighten his hands and arms.
Diego is still in ICU and slowly learning how to eat on his own. He still has a ways to go before he can move back into the room with mom. So every three hours she will leave her room on the 7th floor and go up one floor to NICU to feed Diego. Up to now he has only been able to drink 5 ml of milk on his own. He needs to take in 50 ml so the remaining milk is given thru the feeding tube.Today his Neurologist requested a MRI of Diego's brain to check for nervous system defects. It was scheduled for 2:30pm so we may not get the results today. He also wants to take a muscle biopsy to check for muscular disorders but he is too young for the procedure.
We want to thank everyone for their caring emails, prayers and flowers. All are greatly appreciated!
We are proud to announce the birth of Diego Tonelli-Nova. He was born via c-section at 12:11pm on March 5th at Seton Hospital in Austin, Texas. Despite having been diagnosed with a ventricular septal defect while in utero, Diego showed no signs of distress and was a wonderful shade of pink which indicated he had good blood circulation. Additional tests showed his blood oxygen level to be at 100%. Although we were happy to see indications that his little heart was beating normally, we waited for the results of his planned echocardiogram before feeling he was out of the woods. The exam was performed by a cardiologist within 30 minutes of his birth. Thankfully the results showed his condition was not life threatening and could be surgically corrected once he turned six months old. Unfortunately this is where the good news ended. Looking at Diego we could see something was clearly wrong with his arms and legs. That something was later diagnosed as Arthrogryposis Multiplex Congenita. It is a condition that affects the joints and muscles of the arms and legs. It can also affect the tongue preventing babies from eating on their own as is the case with Diego. When it was clear that he was having difficulties eating, he was moved to Intensive Care and a feeding tube was inserted thru his nose and into his stomach. By this time was only 22 hrs old. As of this writing Diego is still in NICU. Romina is doing well and will require extra care which will keep her in the hospital until Friday. We apologize to everyone for not messaging out the details of Diego's birth sooner. The events over the last 24 hrs have been emotionally overwhelming and we know this is only the beginning. Please check back for updates on Diego's condition.
