February 10, 2008
Saving Giovanni +306 - 326
Giovanni is doing amazing. He had his check up at Dana Farber and Children's Hospital on Januay 25 and with respect to his transplant he doesn't have to return to Dana Farber's Jimmy Clinic until March. His one year anniversary for his tranaplsnt is March 21, ironically my brother's birthday.
With respect to his ED, his first examination was dental. The dentist predicts Giovanni will only get two teeth on the bottom and he has two visible on top. What this means is he will need bone implants in his gums both bottom and top so that bone will grow in his gums and allow for the placement of several posts that will serve as the anchors for dentures that will be built around the existing teeth and implanted posts. This prognosis is better than his entire mouth filling with deformed teeth. The bone implants will involve some obvious pain, but in comparison to everything he's suffered he will weather this storm as he has the others. He will most definitely have some beautiful teeth, though.
His feeding tube was removed on the 25th and a mickey button installed. The next morning when we got Giovanni up it fell out of his stomach causing a panic in our home. Christina immediately called Giovanni's nurse whom rushed to our home and pushed it back in with some lubricant. She then taped it down to Giovanni's stomach and then she and Christina began calling all over to obtain a new one. Turns out the device was defective and the saline filled bubble deflated and fell out. We all returned to the hospital in the morning and Giovanni go a new button. We also got a few spares ... just in case.
Giovanni is doing great. He has become very vocal and is about to begin crawling. He will be walking in no time. Physical therapy continues and he also has a oral therapist now to teach him how to swallow. He's not eating much baby food, loves ours, but just savors it and swirls it around his mouth to only end up stored in his cheeks like a squirrel. Once he tires of the food because he can't swallow it or spit it out he begins to cry at which time we have to pull the food from his mouth.
Giovanni drives have added 11,536 people to the registry and we got another match for a total of 10 now. Incredible. We are now teaming up with the New England American Red Cross Blood Services and hope to add 15 to 20 thousand people to the registry this year. Giovanni is also becoming his own non-profit. The articles are being filed this week, so any donations one makes can be tax deductable.
Please keep visiting the site, send it to your friends, and if possible contact us if you have any leads for any bone marrow drives.
January 20, 2007
Saving Giovanni +299 - 305
Giovanni is still doing wonderful. He is becoming more and more active and vocal. Below are new pictures from Giovanni's 1st Christmas home with the family. This week we have two hospital appointments. The first on the 23 to remove the G-tube and replace it with a button which will be much less of a burden for Giovanni to lay on and hopefully begin to crawl.
The second appointment on the 25 is to begin all of the ED testing. He now has about 5 teth showing through that are all pointed, but he's showing no signs of not having sweat glands.
Giovanni is now over 305 days post-transplant and nearing the one year milestone removing him from serious threat of rejection. There is a one year window for a cord or marrow transplant during which a number of life threatening complications can happen. March 21 is Giovanni one year mark and we are looking forward to it.
I am not writing as much anymore because there are not a lot of updates. He is, indeed, much much to our enjoyment and relief enjoying life as a baby and you can only imagine what a joy that is to us after watching him suffer so much.
January 13, 2008
Saving Giovanni + 292-298
Giovanni is doing great. His intellect is growing, he's putting blocks in there correct holes, using the differnt fundtions on his toys and the cutest thing is waiving. Yes, he is now waiving at people. He is able to get up on his hands and knees but not pulling his knees forward to crawl.
He is scheduled to have his G-tube hose removed and replaced with a button on the 23 of this month and on the 25 the diagnosis for the
ectodermal dysplasia (ED) will begin.
We are simply awed by his progress and happy he is doing so well. I've attacehd a few pictures of him at our local fire department in Belmont, NH, where we did a drive last week. He took his first ride in a fire truck and loved it. Him and his brothers were in their glory. Giovanni was smiling and waiving, and yes he is also claping his hands.
January 6, 2008
Saving Giovanni +291
Giovanni enjoyed his Christmas and being with the family more than words can express. He is now holding up his arm and waiving his hand, his smiles are constant, and he's becoming more and more vocal having now discovered his ability to scream.
He wants to eat abdult foods but still can's swallow, so he experiences the texture of the foods but keeps the food in his cheeks like a squiel storing nuts. A oral stimulator was supposed to be coming to the house for the past two months, but has yet to show. Christina put a call in Friday requesting this therapy because it will delay Giovanni's further development. We want to start eating foods but more importantly learning how to swallow. We let him have foods to feel the texture but after a while he will begin to cry and we need to take the food out of his mouth, which he also fights against.
A third tooth has come in pointed. He now has three teeth indicating
ectodermal dysplasia (ED) but the severity is still unknown. Testing will begin at Boston Children's Hospital on the 25th. Another characteristics of ED is sparse hair. Giovanni's hair appears to be getting thicker after having lost it all from the chemotherapy, so hopefully this will continue. One treatment for this condition of ED is a wig, which we don't want to contemplate. I'd rather he just go bald and grow knowing he has no hair than dealing with a wig and the ridicule of other kids. With respect to his deformed teeth once they all grow in them must be removed and Giovanni then fitted with dentures, which must be adjusted each time his mouth grows until his adult teeth come in and they are removed and replaced with posts and caps.
All in all, we are happy Giovanni is alive and well and progressing through the one-year transplant window free of complications.
We have continued our pledge to put 100,000 people in the internaitonal bone marrow registry and are now teaming up with the American Red Cross to do bone marrow drives. We already have 20 drives scheduled this year and our total is now 11,135.