We are so blessed to live in such a giving community. There are so many friends, family and members of the Burnt Hills community that are doing anything they can to support our family. Each one of you makes the emotional and physical struggles worth the battle. Thank you!
Mrs. Brott, a third grade teacher from BHBL has created an account on makethemameal.com for us. We are so grateful for her organization and continued support. This site allows friends, family, and all those in the community to help our family by coordinating the donation of meals. These donations help in many ways, they help me slow down weight loss, keep the kids eating healthy meals, and allow us to spend more time together. You can find the page under Gina Pedone on makethemameal.com. Thank you. Gina
Never under estimate the power of a home cooked meal! Thank you to Katie, another BHBL parent, for delivering a delicious dinner. I actually ate a full plate. We are so grateful.
Hospital bed being delivered tomorrow. Bitter sweet. Will be happy to reposition myself easier and get in and out of bed, hopefully I will sleep better!
I will try to hold back my sarcasm and disappointment with healthcare, especially insurance...so I had an overnight pulse oximeter test (to measure my oxygen levels while sleeping). I get a phone call Friday telling me that they will be delivering a BIPAP machine for me to wear while sleeping. Then I get another call that says they need to repeat the test in a month. Insurance will not currently cover it because you need to fall below 88% for 5 minutes or more, I went down to 84% but my longest time was 3.5 minutes. So these periods of decreases in oxygen increase my anxiety, the insurance pays for multiple medications for that, they also increase my fatigue during the day which requires more equipment, that insurance will pay for. If I get admitted to the hospital because I am to exhausted to care for myself, they pay for that. So I have to get worse before it can be treated? Gotta love it!
Thank you everyone for reposting my link! We are so grateful for the donations, they are truly a blessing.
I feel like I have asked so much of everyone already and your generosity has far exceeded any hope I had for a miracle. Can each of you try reposting the link, please. Thank you so much for your love and support!
Ok, not even sure where to start. I have always put out a general "Merry Christmas" to friends and family but this year is something much more. I have to start with our families, without all of our parents and siblings I would have given into this illness already! To Bill, Jess, Deb, Sue and the Benevento family, you are all angels who were there to make sure this Christmas was a good memory for the kids and as stress free as possible for Jim and I. To each one of you who made donations I pray that God will bless you abundantly. Merry Christmas and happy holidays to all!
Brought to complete tears today! Jim came home from work and informed me that the owners and employees put together a donation for us. I can't believe that so many people are so kind! They included gift cards, Price Chopper cards and cash donations. Thank you to everyone at J Luke Construction and Hodorowski Homes, you are all angels to me.
I need to send out a special THANK YOU to all of the staff that I worked with in the PICU. I got to spend the afternoon with K Clark making cookies and just hanging out like old times. She came with a delivery of gifts and message of thoughts and prayers from the staff. I may have left the PICU in 2009 but I will never forget the staff. God bless you for the work you do everyday and God bless you for being supportive of me!
Had a very big appointment Thursday, sorry for the delayed post but I was exhausted after. So my PFT (breathing test) was down 6% since my last one in August. Alarming that it dropped but not bad for timeframe. Have been fighting the addition of other meds, however did give in to starting neurotin to decrease the muscle twitching that causes anxiety at night and keeps me from sleeping. Was told they are so bad because I am over using my muscles during the day. Type A, 4 children, I don't know how to do any less but I will try. Lots of blood work ordered, waiting on results. Thank you everyone for your support and donations!
Appointment at ALS Center tomorrow, love the way they schedule you with everyone the same day. Will see MD, RN, PT, OT, RT and social worker. We are very thankful that donations are still coming in, thank you all for reposting our link!
I had the most amazing visitors today! Years ago while working in the PICU I met Marisa and a friendship was born. In an attempt to run away from the pain of losing my mother, we tried moving to Georgia. Although we couldn't get back to NY quick enough that trip was exactly what I needed. I got to know the Benevento family, now I know that was a blessing from God! I love you all very much! Thank you for your love and support, we are truly blessed!
Life always seems a little more normal when the hole house smells like sauce. I am so grateful to my mother-in-law for spending years of Sunday's teaching me how to make it!
Rollercoaster of a weekend. Thank you Paul and Erin for stopping, sorry you caught me in a meltdown. The cookies were good! 4 days left till the kids are home for 2 weeks, I don't ever remember looking forward to that as much as this year!
Amazing day! Jim's brother is awesome for helping me clean and taking me to Target. Was very tired but still made it to watch JV and Varsity wrestle. Vinny wrestled up one weight class and still won with a pin. Read an article today about a new development in research, will be watching for a new clinical trial. Think I will sleep well tonight!
Way to cold to have lunch outing with my motivating brother-in-law, but we did manage to get the tree decorated. By WE, I really mean Jimmy and Gianna. Just want to end the night with another THANK YOU FOR ALL THE LOVE AND SUPPORT!
Thank you for continued donations. Thank you for passing along the link, let's keep it circulating! Now for the next task....in an effort to keep life somewhat normal I would like to make lots of Christmas cookies. If anyone has a free day and would like to help please send me a message via inbox.
So amazed by everyone's generosity. We were supposed to go get our tree Sunday, however I had a couple bad days. You have to love friends and neighbors who show up at your door with tree in hand. Thank you!
We are so grateful for the continued donations. It means so much to us that so many people have donated to my fight against ALS, especially during the Christmas season. We know that there are many gifts that you could have purchased instead of donations. Love Gina and Jim.
gina is 37 years old. she is fighting als (lou gherig's disease). she has 4 children ranging in age from 3-15. she is an rn who cannot work due to her illness. her husband is working 2 jobs to make ends meet. the cost of medical supplies is increasing, not to mention raising their family. please help with whatever you can. thank you.