Hi there friends and family,
I know that it has been a while since I have sent out an update on Matthew. There is good reason for that. We were cruising along keeping up with his routine care with the support of our private duty nurses, friends and family. On Easter Sunday we had a wonderful day with my mother’s brother, his wife and all of their children and grandchildren. Our nurse Gail volunteered to help with Matthew’s care, everyone brought some food and we had a great time eating and catching up. I was suffering from my first head cold and now wonder if that started us off on our downward spiral.
On the night of April 17th, Matthew started to experience difficulty breathing and managing his oral secretions. At 1:30 am on April 18th we rushed him by ambulance to St. Luke’s hospital in New Bedford, then once again off to Children’s Hospital. His admitting diagnosis was aspiration pneumonia, urinary tract infection and collapsed lung. We had a one week combined ICU, 9 North stay then we returned home. That lasted 2 days and he was once again rushed back to Children’s with another episode of collapsed lungs. His seizure activity acted up again and we had to increase the medication. This led to another 3 week stay in ICU. We have now been home for almost 2 weeks and he is doing better, but he requires a lot more care. Meanwhile Scott’s mom has been diagnosed with metastatic breast cancer to the liver. She has been hospitalized also and has recently been transferred to short-term rehab. We hope that she will regain some strength and return home soon.
While Matt was in the hospital we received visits from friends and family. We took advantage of 24 hour nursing care and spent some time at the Best Western for a good night sleep.
Kathy Ruginis and Jean Revil from Bishop Stang High School came by for a visit and informed us of the new campaign for the student body at Stang. They hope to have students join the Pierre Giorgio PACT team, which encourages students to perform daily acts of charity. If you remember they also started the campaign to pray to Pier Giorgio for a cure for Matthew. He needs a miracle to become a saint and we are hoping Matt will be that miracle. Go to www.FrassitiUSA.org for more info.
We know that our Matthew has inspired many to perform acts of charity. We have been the beneficiaries of many charitable acts. We received a phone message once again from an old friend of Matthew’s, Patric MacQuade, that he and his dorm friends at UMASS Amherst had raised over $300 dollars for Lafora research. Our neighborhood friend continues to leave us weekly can donations. Julie continues to supply us with many of her culinary delights and friendship. The good people in California had a major fundraiser for Lafora research and are working hard to connect the network of Lafora families that are spread out across the US and abroad. Our load is a lot lighter knowing that so many people care and we hope that our Matthew will always continue to inspire people to be charitable not only towards us and our battle of Lafora disease but to others who are less fortunate than ourselves.
The ICU team at Children’s Hospital saved our dear Matthew once again. On June 14, 2009 NSTAR is sponsoring a fundraiser for Children’s Hospital. We may participate depending on Matthew’s status. But even if we don’t, maybe you might consider making a donation to this wonderful healthcare resource in your backyard. I hope you never need their services, but we all need to be very thankful that this institution exists as a resource to all in need. They treat the very sickest of kids and support the parents and families unlike any other local hospital you will ever encounter.
We are hoping for a better summer, but will focus on taking one day at a time.
Keep in touch; we love to read your messages.
Lisa, Scott and Matthew
