July 31, 2007
Saving Giovanni 133
July 30, 2007
Saving Giovanni 132
July 29, 2007
Saving Giovanni +131
July 28, 2007
Saving Giovanni + 130
Giovanni slept well last night and so did we. Mom was out most of the morning and part of the afternoon with one of the Marrow Chicks (Denise) organizing Giovanni's Massachusetts party. Grandma and I spent the morning with Giovanni hanging out. They got along very well. Giovanni is very particular about who holds him. A stranger picks him up and he's screaming. Grandma has been getting more face time with the boy so they are getting along well. Grandma spent an entire two months at his bedside in November and December.
Late afternoon we all headed to Concord to pick up Elena who spent the night and go to the party in the morning. Giovanni gace her a little grief since she's been in Italy for almost a month but she settled him down quickly and got back to his Italian lessons. He loves it when she speaks Italian to him.
After meeting Elena we all went to Don Giovanni's in Concord to eat. They are a huge supporter of Giovanni and still have his original poster in the doorway to the eatery. Brenda, John, and everyone was thrilled to see Giovanni for the first time since he was born and he behaved wonderfully while we had a great meal. Please, if you every get the chance and want to eat some Italian food that is the closest your gonna get outside of Little Italy in NY or Italy itself please stop by Don Giovanni's on Depot Street in Concord and treat youself to a great meal.
July 27, 2007
Saving Giovanni 129
July 26, 2007
Saving Giovanni +128
Grandma Judy is visiting
Giovanni ... please. Turning one does not mean you get to keep mom and dad up all night. It started about 3:30am and lasted until 6am when he finally felt he should go to sleep. Maybe he was just excited that Grandma Judy was coming for several days and to attend his Methuen birthday party.
More vomiting today. Mom is no longer gonna give the boy formula in the bottle. Only juice. Grandma had a good day with baby boy. He let her hold him, and she got even more cuddle time when she took him up to bed and held him before putting him down.
We hope baby boy is gonna sleep better tonight. I can't handle those rib shots in the morning from Mom.
July 25, 2007
Saving Giovanni +127
Giovanni had a good day for the most part but he's been vomitting his formula. He wont drink anything by bottle anymore with the exception of a little juice. Everything is going in the feeding tube. We're actually trying to push some more solids, too, but he will only eat som much. We are hoping its the weather.
Giovanni had a good day otherwise playing with his brothers and in the yard with mom. He is becoming more and more vocal and the boys actually had him giggling. It was the first time I saw him giggle such and it was great. The first of many more firsts to come.
July 24, 2007
Saving Giovanni +126
Happy 1st birthday Giovanni. As I was on my way to bed after 12am I walked into Giovanni's room and to his crib and looking down upon him saw him peacefully lying there on his back with his arms and legs spread out as if he didn't have a care in the world and I smile broke across my face as I thought to myself "yeah baby boy you made it to you rfirst birthday." It was a warm and gratifying smile. As he slept I could hear him breathing in and out, a slight snor, and smiling again and I leaned down to give him a goodnight kiss as I do every night for me and everyone who loves him.
In the morning, I awoke to an elbow in my ribs from Christina followed by, "Go take care of your son." If she wants an exta minute of shut eye before engaging in her grueling multitude of multitasking motherhood throughout the day I spring to my feet just grateful that I'm not a mother charged with taking care of the kids and home as gratifying as it must be. For-get-about-it, I'd rather do roofing and that's just about the hardest thing one can do in the contruction field.
Anyway, I goes into baby boys room and he's cooing and grabing for his baby monitor until he sees me and looking up gives me his regular morning smile that melts me. He then kicks his feet up and down sometimes smaking his arms off the matress and then comes the tongue. He's one happy baby.
Happy birthday baby boy. More kicks, arms a swinging, smile and the finale with the tongue. I give him his bincky and he rolls over back to sleep.
We had a small party for Giovanni at the house, a Superman cake, and presents. One of his favorite gifts was from Luca: A See and Say that names the animals speaking Italian. Thank you Luca and everyone else who sent Giovanni cards, gifts, and birthday wishes. WMUR also sent birthday wishes, the Laconia Citizen and the Union Leader.
July 23, 2007
Saving Giovanni +125
One day to do to Giovanni's first birthday. Some thought this day may not come but Giovanni is one who has repeatedly defied the odds. His 1st birthday is tomorrow and we will have a small party at the Belmont house folowed by a bash at the Knights of Columbus in Methuen, Ma where Giovanni will meet all his Massachusetts supporters and friends. He was on the cover of the Laconia Citizen today under the title, "
Giovanni set to mark his 1st birthday."
The Union Leader and WMUR News will attend Giovanni's birthday at the house and on Sunday RAI International Italian TV will be there as well as other New England stations and papers. Were also expecting many labor union leaders and union men. It will be quite a bash for Giovanni's first birthday.
Giovanni had another good day and only woke up a few times during the night. His new behavior is throwing everyting he gets his hands on to the ground. Bone marrow drives this weekend added 42 more people to the registry for a total of 8,932. Giovanni's almost at his halfway mark.
July 22, 2007
Saving Giovanni 124
We all spent another relaxing day together as a family. Giovanni just kicks back and observes everything that goes on. He did spend several hours with a nurse at the house, Linda, whom he's taking a liking to. She reads to him and he very much enjoys the books that you can feel things like cloth, etc. Linda feels he's developing cognitive abilities by distinguishing between the interactive books versus the traditional book that is just read to him.
July 21, 2007
Saving Giovanni 123
The heavy weight enjoyed Baby Boy Giovanni enjoyed a ride in the car to Weirs Beach where we strolled down the boardwalk and took his brothers to the bumper cars. He tured some heads again with people who recognized him from the press. After walking on the beach we headed home where Giovanni took a nap. When he later awoke he hung outside with his brothers while they played in the yar and he watched them He especially likes watching the neighbors chickens chase each other or get chased by Alex and Adrian.
July 20, 2007
Saving Giovanni 122
Weight: 14.2 lbs
Giovanni has broken the 14 pound mark, 14.2 lb to be exact. He is 23 inches long and over 14 pounds. Although this is short for his age given his hospitalization the doctors are telling us he's the right weight and we now need to make sure he dosen't put too much weight on. Imagine that, we've been trying to fatten the kid up for a year and now we have to watch is weight.
The doctors are extremely impressed but they warned us not to allow any sick people around him at the party and not to allow anyon to hold him. He's still very vulnerable to others germs. His platelet count was 329,00, ANC 8,050, white blood cell count 11,630. These are great numbers.
July 19, 2007
Saving Giovanni 121
Big day tomorrow at the Jimmy Fund Clinic for Giovanni. How much will he weigh. We booked some bone marrow drives, up to five now. Even more on the way. Giovanni is doing well.
July 18, 2007
Saving Giovanni 120
One hundred and twenty days. Giovanni is doing great. Birthday is nearing.
July 17, 2007
Saving Giovanni 119
Giovanni was a terror for mom this afternoon and evening. He just wanted her to hold him and that was final. When Mom finally got them all upstairs for baths and layed Giovanni on the floor he was contetn from the action in the tub from his brothers. He has one hell of a temper.
He otherwise ate and rested like a baby should. His physical therapy has started to help him develop his muscularity and motor skills. He's behind becauseof the time he spent in the hospital but he'll catch up. We'll keep you posted on his progress. The count down is starting towards his first birthday.
July 16, 2007
Saving Giovanni 118
One hundred and eighteen days post transplant today. Imagine, when we finally found out about Giovanni's immune condition at Dartmouth Hitchcock in NH they told us kids with such a condition die within one year without a bone marrow transplant. And we were not able to find bone marrow. Cord blood saved Giovanni but kids are still dying. Please help us organize more bone marrow drives so that more kids live like Giovanni.
He is becoming quite a character. I love it in the morning when I wake up at about 5:30 and walk into his room and he looks up at me with this big smile and starts kicking his legs. I hand him his binky and he rolls over on his side pulling his blanket up to his face and falls back to sleep.
He's eating good, but he refuses to drink the formula. He'll drink some juice, but he's doing little through the bottle. The G-tube is great, though. He's gaining weight and getting stronger.
July 15, 2007
Saving Giovanni + 117
Giovanni slept well during most of the night only awaking a few times. In the morning Mom hit the gym while I watched the boy. We had a good time. His smile--with his tongue sticking out--just goes right through you.
Jojo and Cathy returned late morning and we enjoyed another BBQ for lunch. Giovanni again let Jojo hold him without crying and Jojo spoke to him for about an hour. The were giggling, smiling, he was tickling him and then tired Giovanni fell off to sleep, as did Jojo leter on the couch.
July 14, 2007
Saving Giovanni + 116
Giovanni is doing great. He spent part of the morning and the early afternoon with his current favorite nurse Linda while Mom went to the gym and ran a bunch of errands. Giovanni behaved the whole time and didn't even cry. I worked until the evening and was welcomed by a big giggling and smiling Giovanni when I walked in the door. Its simply amazing to see the spirit in this kid after all he's suffered.
Giovanni had a visitor from his buddy Jojo of the Local 82 last night and flirted with his girlfriend. Jojo's letting it slide for now. He was the first man to pick up Giovanni and not have a screaming baby in his hands. He likes Jojo and even giggled for him. We all enjoyed a nice BBQ and late in the evening they returned to their lake side cotage.
July 13, 2007
Saving Giovanni + 115
Weight: 13.14 lbs
Giovanni, the boys, Mom and Grandma all headed to Dana Farber for a 10am appointment to get Giovanni's IGIA infusion. They also met Terry Nicholes so she could get some pictures for the Princeton newspaper that convered the First Congregational Church Bone Marrow Drive where we added another 6 life saving donors.
The best news of all though is Giovanni's new record weight: 13.14lbs. Yes, by next week he will be breaking into the 14 pound class.
July 12, 2007
Saving Giovanni +114
I'm sorry I'm missing days. I working 14 hours a day to try and get a handle on the debt we accrued in personal expenses while Giovanni was in the hospital and I didn't work. He is doing great though and it's all worth it.
July 11, 2007
Saving Giovanni +113
Giovanni spent the day with Grandma Joyce while Mom took the boys to Story Land with one of the Marrow Chicks. Giovanni and Grandma spent a great day together.
July 10, 2007
Saving Giovanni + 112
We are most honored to report today that a donor from a Giovanni Bone Marrow Drive at the Parkland Medical Center in Derry, NH, is a match to a 13-year-old boy suffering from Leukemia in need of a bone marrow transplant to fight for his life. We've waited for this day and know many more will come.
Today, before the age of one, Giovanni saved his first life. And absent the compassion and zealousness in which everyone has rallied to save Giovanni we would not be celebrating this day, nor the many more that will follow during which the parents of dying children will close their eyes in rapture and bow their heads in complete relief thanking their higher power for giving their child a second chance at life. Thank you all for making this possible. Please help us continue by conducting more bone marrow drives.
As Giovanni's lays up stairs asleep he's oblivious to the impact he's had on the world, but as I watch him it amazes me and makes me proud to have a son whose made such an impact before the age of one. If this is any measure of his contribution to the world he will undoubtedly be a great man who will make a significant contribution. Indeed, he is one whom we may all be proud of for the actions he's inspired us all to take.
Finally, we thank
www.dkmsamericas.org and specifically Katharina Harth for conducting the Derry, NH, drive where the match was located. This organization was created in honor of Katharina's mother.
July 9, 2007
Saving Giovanni + 111
Can you believe we are post-transplant day 111 + Its great and Giovanni is progressing strongly. We did, however, get a call today about his IVIG being low today, so Mom must bring him to the Jimmy clinic Friday.
Giovanni again had a visiting nurse sit with him and gave her a hard time at first but settled down after a while for a nap and then played the rest of the time.
Giovanni's first birthday is July 24, and we are planning a birthday party for July 29 at the
Knights of Columbus on Rt 28 in Methuen, MA, from 12pm to 5pm. So everyone who wants to visit Giovanni for his birthday--unless you've been sick within the last two weeks from the date of the party--please email me at
mguglielmo@helpgiovanniguglielmo.org to let us know your coming.
July 8, 2007
Saving Giovanni + 110
Giovanni had a good Sunday with us and even played nice with a visiting nurse for four hours. He started a new behavior today, shaking his head back and forth in the no motion and smiling knowing he's acquired a new motor skill.
He's eating more and more solid foods, almost back to where he was before the G-tube, but he's barely drinking anything through the bottle. He hates the formula but will drink some juice. So everything is going in the tube.
July 7, 2007
Saving Giovanni + 109
Giovanni slept well and had a relaxing day with the family. Grandma Judy got lots of cuddle time and all was well. We've spent a lot of time on the phone telling everyone about Giovanni's progress and everyone is thrilled.
Giovanni's 1st birthday is coming up on the 24 of July and we are hoping to plan a nice party for him. All his family and friends are invited. And in August we plan on finally having Giovanni baptized.
July 6, 2007
Saving Giovanni + 208
Giovanni got a big big, no huge break today. His intestinal biopsy is clear. Specifically, one of the major things wrong with Giovanni that was responsible for permitting infection and preventing food intake thus resulting in failure to thrive was flattened and distorted villi in his small intestines. That is, the little fingers on the wall of your intestines covered with A cells fight infection and assist with the absorbtion of food. Since Giovanni's cells were defective the A cells fell off the villi resulting in chronic diarrhea, vomiting, repeated serious infections and the inability to gain weight.
When we spoke to the transplant team prior to the transplant I asked if the transplant is successful wont the new A cells stick to the villi allowing them to stand up. The team responded, its possible but not probable. Christina and I were willing to accept a possible knowing the alternative was cholitis, chronic diarrhea, and the only remedy was a small bowel transplant with high risk of rejection given a second introduction of non-self matter, i.e., another's small intestine into Giovanni whose creating a new immune system from a donor.
Well the news we got Friday is that Giovanni's villi are standing and have corrected themselves. This is great news for Giovanni considering he will not have to suffer from the intestinal issue but also very significant for other NEMO babies with the same issue in that it provides evidence that a cord blood transplant can cure this issue.
We also learned Giovanni weighs 13.6 now, his platelets are 308,000, his ANC 8,170, and his white blood cells are 10,720. His clinic visits were also reduced to every other week. All great news.
We were all overjoyed with the news, especially Grandma Judy who traveled to the hospital with Mom for the second day. Life is good, Giovanni is doing remarkable.
For the rest of the day and night Grandma Judy and Giovanni spent time together and Giovanni let Grandma hold him without crying.
July 5, 2007
Saving Giovanni +207
Weight: 13.4 lbs
Giovanni was off to the hospital early in the morning with Mom, Grandma Judy, and Deanna welcomed them all at the hospital. Giovanni behaved all the way to the hospital, as did his brothers who also went along to see what Mom does at the hospital with Giovanni all the time.
The first good news was Giovanni finally broke 13 pounds, 13.4 lb to be exact. His ultrasound was clear and in the morning Mom and Grandma will return to the hospital for Giovanni's regular weekly exam. They discovered no problems, which was a relief to me because I was a little worried since he wouldn't go to sleep last night. Anyway, we hope for more good news tomorrow.
July 4, 2007
Saving Giovanni +106
Wecome back Grandma Judy
Grandma Judy is back to visit her baby boy. It was a rough start, he cried when she tried to hold him at first, but after several hours he remembered who spent two straight months at his bedside in the hospital when he was struggling for life before his NEMO diagnosis. In fact, he refused to go to sleep to almost 12am. I was worried that something was wrong because he's usually in bed by 8:30 and nothing would sooth him, not me, not mom, and he always calms for mom.
Once he was asleep he only got up twice during the night for his pacifier. For his first 4th of July it was nothing special and the weather was terrible so we couldn't even bring him out for any fireworks. He did, however, live to see his first 4th of July and absent that anonymous cord blood donation he received its probable I'd still be mourning my little Giovanni instead of celebrating his life.
Mom and Grandma Judy are off to the GI doctor in the morning, so lets hope for more good news.
July 3, 2007
Saving Giovanni +105
Giovanni had a good day with his brothers and mom. He ate a little more baby food, but he's not drinking down any bottles yet. No tremeres lately.
July 2, 2007
Saving Giovanni +104
One hundred and four days post transplant and Giovanni is doing great. He ate solids again today and more than yesterday. He smiled, talked, played, cryied, soiled himself, slept and ate. Indeed, absent the G-tube, chest tube, and medications one would think him a regular baby, and knowing nothing else he probably feels as though he's a regular baby. As he grows we can only hope that he will not even remember all he's been through.
One irony struck me today, though, while holding him this evening as Christina bathed the boys. I watched him as his little fingers curled around a water flush--a syrnige without a point--holding it like a toy and thought to myself: "Other children are playing with toys and such and you with something you think a toy or at least something that intrigues you because you spent most of your life in the hospital seeing these things stuck in you everyday."
It was both sad and enlightening knowing but for these little syringes and all the medical knowledge that graces our world he would not be in my arms holding that syringe like a toy. Day 105 is here and many more will follow. Please enjoy the below slide show comprising pictures taken my many of Giovanni's friends.
July 1, 2007
Saving Giovanni + 103
Giovanni was introduced to many families today who helped with bone marrow drives, held bone marrow drives, donated time and money, followed his journey through the media and on his website and came to visit him and enjoy some food before we raffled off the Jaguar: Winning ticket: 2103.
Thank you everyone who attended. Giovanni had a great day and gave smiles to all the new faces he saw, as well as all the faces he knows. At the end of the night we had a huge fireworks show and everyone departed to their homes in both NH and MA. Again, thank you everyone who attended.
New pictures will be posted as soon as they begin to arrive in emails from everyone who attended.