Your thinking to yourself “Why isn’t she giving us updates every month?!”. I’m sorry but our lives have not been that interesting lately! As most of you know, we moved to Palm Coast and over the past few months have been learning the area and trying to set up new appoinments for Francesco.
We DID recently have an eye appointment but it turned out to be a disaster for me. The day went well, Franco did great but we didn’t get the news we wanted. Dr.Ikeada gave us high hopes a few months back but managed to completley ruin this appt. Dom and I were told that his vision DID NOT change so I walked away with sadness and tears. I have always hung onto hope, thinking that one day his vision would change and he’d be just like the rest of us… sadly, that will never happen and I’m OK with it.
Despite the horrible eye apptointment, Francesco started summer camp at his NEW SCHOOL 🙂 He went for 3 weeks, 3 days a week. He was able to meet a few kids that will in class. I was able to dro[p him off and chat with all of the parents for a while, and I must say, for once, I felt like a NORMAL parent. We often talked about bowel movements, the number of therapies and doctor visits we go to (It was nice).
Franco started seeing a few doctors in the area. Our last pediatric appt went well. Dom and I were told that Francescos height and weight look PERFECT (this means the GH is working great!). We have also set up a opthalmology appt in Jacksoniville on Sept 10!
My baby boy turned “4” on August 8th. My sweet baby is growing up and will officially start school on Monday the 19th. He has turned into such a great kid! Francesco is trying to talk up a storm, he often repeats EVERYTHING. Little man is in a big boy carseat and no longer needs a stroller or toys when we go out! I am so proud of him, I really am!
I will be sure to update again at the end of August to inform you on Francescos first day of school. I will also try to upload more photos.
I appreciate all of you that STILL visit. Thank you so much for taking the time to read!
The past few months have been a hot mess between looking for a new house in St. Augustine/Palm Coast, packing and unpacking and just getting settled in general! Francesco has has no therapies and no appointments but as of next week he is no longer on vacation.. it’s back to that busy schedule we once had! Our HUGE eye appointment is coming up on Monday the 24th and I must say I am nervous as ever but looking forward to it!
Francesco is starting to talk a bit, mostly asking for “MILK” 600x a day. We are working on everything from potty training, learning the alphabet and just plain becoming a toddler!
Life is good. Again, can’t wait for next weeks appt. I promise to add a ton of photos, videos and updates next week guys!
Sending love from our new place in Palm Coast. Sweet Jesus, we made it!
Happy Valentines Day!!
What a great month! Francesco is such an amazing kid. This guy has learned so much since he has started with his new therapist! Franco is learning his manners but saying “thank you” in sign and is also learning how to say “Please!”. Over the past few months, I have been pushing this guy to talk and eat his food on his own and I must say, he is doing great!
Francesco try’s so hard to talk! I can’t wait until he actually says a full sentence! If he wants something from me (like milk, juice,snack), he needs to ask for it… A mini conversation with Franco usually starts with crying but we often get over it. I say things to him like “Francesco, do you want juice or milk?”, he responds with “Goooo” (He says go all the time now!). I repeat myself over and over until he either makes a “M’ or “J” sound. There are lots of tears in this house but its all due to “tough love”, that is the only way he will ever learn!
This month Franco’s dad was home for a few days so we decided to take a trip to Tampa and go to the fair! This fair was huge, it was loud and I never thought he would last 10 minutes… I was wrong! Dad insisted that he take Francesco on “The Swings”, and he did. I freaked out, Franco freaked out but his dad stayed calm and eventually, Francesco started to enjoy it! We also went on “The Slide”, this sucker was huge! It was a slide that required you to sit on a potatoe sack, both myself and Domenick took turns with Franco… HE LOVED IT!
The little guy is growing up and it makes me sad. He is becoming such a “tough guy”, he often pushes your buttons to see how much he can get away with! Francecso is such a “Mommas Boy” but I’m not complaining!
Something I have found a bit exciting was—-
Francescos teacher gave him a mini cupcake with sprinkles for Valentines Day. He is not a huge fan of sweets so he refused it eat it. A few of the sprinkles fell onto the table as she cleaned up a small mess (the sprinkles were white and pink and the table was dark blue). Franco turned his head towards one of the sprinkles, and touched them! HE SAW THE SPRINKLE! I was amazed!
March is going to be a busy month for us! Packing, packing and packing on top of appointments, evaluations and therapies. We are always busy but it keeps us on our toes!!
I appreciate those of you that take time out of your busy day to read these updates! I know that I have taken a bit longer than usual to update you but I have been sick!
Happy New Year!
We rang the New Year in with positive attitude! January was a busy month for us with a number of appointments to go as well as a number of phone calls to make. This year we will be moving to St. Augustine (in April to be exact) so we have been getting our “ducks in a row” and getting all the last minute details finalized for school in hopes that Francesco starts in May! Our family is looking forward to this move and we are so excited for Franco to finally start school.
Growth Hormone has officially kicked in–Little man has grown about 4 inches!
I got a chance to take Francesco to the zoo, he LOVED it! They had bird sanctuary that we were able to walk through, the birds were very loud so was hesitant to bring Francesco into it… turns out that he was a huge fan of the birds! One of the employees were kind enough to show him how to feed the birds, he also got a chance to pet one! Our trip to the zoo didn’t last very long due to the fact that NONE of the animals were out so the manager offered us passes to come back another day!
Once we left the zoo we stopped by the beach, Francesco hated the beach the first time we had gone! With summer right around the corner, I thought we should give it a shot! We pulled into the parking lot with the windows down, as soon as he heard the sound of the ocean, he screamed bloody murder! I still took him onto the beach, we were there for less than 10 minutes. I tried to put his feet in the water and let him touch the sand but he was very unhappy so we left! As soon as I got into the car, I cried… Sometimes I just wish things were different 😦
Francesco had a number of doctor visits this month including his opthalmology appt, first visit to the dentist and a pediatric check up.
Franco’s first trip to the dentist was a SUCCESS, he did great, no tears, no sadness just an amazing smile! The dentist said that his teeth are spaced out perfectly and he doesn’t have any cavities!
Our visit with the pediatrician was a mess… Poor Francesco has had bowel issues since he was born but this time it has gotten so bad that they had to do an x-ray on his belly to see what the problem was. The little guy would only “go” once a week… come to find out he had 3 huge blockages in his belly! The doc put him on a daily regimen of miralex so hopefully it starts to help!
The opthalmologist was a nightmare, our appointment ran over a few hours! We got to the appointment 20 mintues early (as I usually do so Francesco can explore his surroundings) but we didn’t get called back for almost 2 hours! I was so angry! By the time Francesco got his eyes looked at, he was miserable! The GOOD news is—his vision HAS improved! Doc says that the plan was to get Franco a new script for his glasses during this visit but she says that his vision seems to be getting better and feels that he would most likely need another new script in June… with that said, he will get a new script for his glasses in June! Are those stem cells working miracles?? Guess we will see what the next year brings us!
This month marks our 1 year anniversary–We left for China on Jan 25 2012 in hopes for a miracle, here we are a year later with positivie updates……
Much Love, Cheri
The Novello Family had a great month. My husband was able to spend Christmas day with us 🙂 Francesco opened up a number of gifts with assistance but he did great. I don’t think he understands the concept of opening the package to get to the gift, rather than wrapping paper flying all over the house, Franco punctured a small hole in each gift just enough to get to the buttons on the toys instead!
I’m happy to say that we didn’t have any appointments this month but the month of January is going to be a bit busy. We have a few appointments set up for the dentist (we want to be sure we pick a great dentist!) and also another for the Ophthalmologist (I’m so excited!). The visit to the Ophthalmologist will be our 3rd since our return home from China; we were told that THIS visit, Franco will most likely need a new script for glasses.
I have noticed that Francesco has been removing his glasses and squinting allot. I’m assuming the script is no longer strong enough for the little guy or maybe he doesn’t need them anymore?!
Francesco and I went to the petting farm for the first time with the Early Intervention (E.I) group through The Lighthouse of Central Florida. The E.I group has a number of children with disabilities including a few that are blind. Franco loved the farm; he really enjoyed the animals, especially the sheep! We also went on a hay ride, a train ride and attempted riding a pony (that didn’t happen!).
Francesco’s growth hormone has officially kicked in; his shoe size has gone from a 6 to an 81/2 in a month! He seems to be getting a bit taller and more handsome on a daily basis. He is doing great in OT and ST therapy, he has started saying a few words (Go,More,Again,Good). Franco has also started using a few sign language signs to communicate with us until he starts talking up a storm, he started signing more, on and thank you!
I have become so proud of my little guy; he has accomplished so much over this past year. Our “One year anniversary” to China is coming up soon, it doesn’t seem like much to most people but to our family, a year home from China is a year full of miracles and growth!
THANK YOU again to those of you that have supported us through this experience!
Wishing everyone a safe and happy new year!
HAPPY NEW YEAR 2013
Hope everyone had a great Thanksgiving!
This month we had to take Francesco to the hospital to get an MRI. The results came back just a few days later. The doctor told us that there is NO TUMOR but there are a number of cysts (4 to be exact) around the brain, measuring in at 1.5cm … we were told that they would need to keep a close eye on the cysts to make sure that they do not grow (if they are 3.0 cm or larger they must be removed and a biopsy must be done).
We went to the neurologist on the 30th (the reason for my delay again). Dr. Pollack gave us the results from Franco E.E.G, looks like he doesn’t have any seizures (woohoo!) but there are some brain abnormalities which could eventually lead to behavioral problems.
Our I.E.P was also this month. Franco, myself and Miss Dianne (his vision teacher) went to the meeting with an open mind. There were 8 people (not including the three of us) asking us a number of questions about Francesco, his health and his daily routine. The teachers were very kind but seemed to rush us out of the room (wasn’t a fan of that what so ever). Long story short, they wanted to put my son in the ESE (Exceptional Student Education) classroom. The classroom has 12 kids in it and most of them are wheelchair bound, have Down syndrome or are autistic. Dom and I decided NOT to put him in this classroom. Although Francesco is considered “handicap”, he does not need to be in a classroom to be babysat (and this is what would happen if he were to go to this school due to the fact that each child requires much one on one attention).
I have filled out Franco’s application for The Florida’s School for The Deaf and Blind and got the ball rolling so once we move to St. Augustine in May, Franco will be able to start school right away (they recently started summer classes for the Pre-K).
Francesco had started his growth hormone shots on the 11/21. He took his first shot like a champ. The needle is very tiny. The nurse recommended that we give him the shot while he is asleep so that’s what we now do. He will be on the growth hormone for 2 years (or until the doctor tells us to stop). Franco’s attitude has changed a bit, we are not sure if it is due to the g.h or if it’s because he is in his “terrible threes” phase but I sure hope it passes!
Our Occupational Therapy and Speech classes are going great, Francesco seems to enjoy the teachers (although they make him work). His OT is teaching him different textures and is doing TONS of projects with him (which I LOVE!). The Speech Therapist is teaching him a few things in sign so he can communicate with us without screaming and is also working on the vowels.
Franco’s vision has IMPROVED! Yes, I saw it has IMPROVED!
There are so many NEW things that he is doing that is so hard to explain but I can assure you that he is using his vision. His next Ophthalmology appointment is in January and WE CAN’T WAIT to see what Dr. Ikeda has to say!
Our Christmas tree is up and the holiday is right around the corner. The only thing I wanted to Christmas last year was for my child to see his toys; I think it’s safe to say that this year, IT WILL HAPPEN!
Wishing all of you a very safe and Happy Holiday!
P.s I am still working on new photos!
I apologize for the delay everyone. We have been patiently waiting for test results from Francesco’s Growth Hormone testing and his E.E.G. results as well. Today (Oct26th), we finally got the results back…
The results for the E.E.G (Checking for absence seizures) came back today but the doctor was not in the office to look them over, so we are going to set up an appointment with in the next few days so he is able to explain them to me in full detail. I did talk to his head nurse however; she informed me that his paperwork did say that the test results came back “abnormal”.
I also received a call from the endocrinologist; this was in regards to the growth hormone testing. The doctor called and informed me that Francesco’s growth hormone levels are at a “dangerously low level” and that an MRI would be in store. I asked as many questions as I could while on the phone with him, but it was difficult because I was in tears.
The endo told me that he was “worried” about this and that Franco needed the MRI as soon as possible. I asked “What does an MRI have to do with the growth hormone levels?”
I was told that an MRI would help us determine whether or not Francesco has a TUMOR! As the tears get heavier and I start to mumble…”Dr. Yu, what gives you the idea that he would have a tumor?” Dr. Yu went on to tell me that cases like these aren’t seen very often but a tumor could be growing around the pituitary gland.
In my mind I am thinking to myself “Where the hell did this come from!?” Why us?! I am a now more of a wreck then I was 10 minutes ago. I just don’t understand why these things happen to our son!
I have been the type of person to try to help those in need. I have always tried to mend broken relationships and try to fix everyone else’s problems. It’s clear that as a family, our hands are full. It’s time to stop worrying about everyone else and start to spend 100% of my time focused on my family. This will be our sons second MRI since he was born. We are more than nervous and are not looking forward to results, what so ever.
My poor husband just left to go back on the road an hour before I received these phone calls so the phone call to him was devastating. Our family often endures the most horrible things one could imagine. Yes, I understand that there are people out there that have it much worse but sometimes I have to sit back and think of myself and my family.
We try to stay as positive as possible but it is very, very difficult.
One a light note—
Francesco’s vision seems to have improved a bit. We go for a three mile walk daily and towards the end of the walk, I take him out of his stroller and ask him to walk with “TOM”. He has been “looking” at EVERY electric box in the grass . Franco has walked on the same sidewalk for months now but has never noticed any of this, now; he stops, bends over and checks everything out.
We also took a trip to my cousin Kurts new home for his birthday. Francesco and I had never been before so it was something new and exciting for the both of us. There were a number of adults and 6 children there. Franco entered the house for the very first time and proceeded to travel throughout the house as if it were his own (Mind you, the tiles were black and walls were white). I was amazed at the way he played with the kids and managed to get around without “TOM”.
Francesco has also been able to sit in the shopping carts at the stores rather than staying in his stroller. This is something that we have been working on for months now and I think that we just might have it mastered!
We just started our new OT and speech classes last week and are looking forward to what lies ahead.
Nov. 6th – We have a meeting at an elementary school that Franco could possibly be going to. Can’t wait to update you next month and tell you how it went!
Our little guy is growing to be the sweetest, most loveable child. Franco enjoys giving kisses but we are still working on hugs, those take some practice (Open wide, around the neck and squeeeeze).
Dom and I couldn’t be more proud of him for all that he has gone through. Francesco surprises us daily. We are both looking forward to the day he decides to talk and of course the day we hit the lotto (Either chances are slim to none—or so it seems!)
Enjoy your Halloween everyone!
This month has been of one of the worst months by far.
As a family, we have learned our strengths and weaknesses. It has been a long, hard road for The Novellos and we still can’t seem to catch a break…
We started off our month with therapies as always and our routine blood work that we get done every three months or so. Francesco HATES to get his blood drawn and as he gets older, he gets stronger. The poor guy had to be stuck twice due to the fact that he nearly ripped out the needle from his arm! As usual, the blood work comes back and we receive the same phone call each time… his little body lacks the growth hormone it needs.
Franco and I took a trip to his neurologist – The neurologist asked if we had any concerns with Francesco. We usually go over the same information every visit. Dom and I have had a red flag up in regards to seizures so I made sure to bring it to the doctor’s attention.
I was told that when a person is blind it’s clear that they have no control over the eye muscles like you and I do, so their eyes tend to wander (We call it “Cookie Monster eyes”). As the doctor asked questions he noticed Franco staring off into space for a few seconds and recommended an “Electroencephalography ” or as we like to call it an “EEG”. An EEG measures the brain waves and will be able to determine if Franco is “Absence Seizures”. Our appointment is set for October 18th.
Our trip to the endocrinologist went as expected. We were asked to get another x-ray of Francescos hand prior to the appointment so the doctor could compare it to that of a three year old child. The endo informs me that Francos hand is the size of a two year old; his bones aren’t growing the way they should for his age.
The words that I didn’t want to hear had come out of his mouth, “I’m sorry mom, but Francesco needs to be put on growth hormone”. I have become familiar with the GH due to all of the other ONH/SOD parents that have their children on, so I’ve been able to ask questions and get advice from the other parents.
The endo is in the process of setting up a three hour test for Francesco. This test will determine the amount of growth hormone I his little baby body. After the testing is complete, we will go back to the office and figure out the amount of GH that Franco will need to take. From what we understand, he will have a shot a day, six days a week… but we are not 100% sure of this just yet.
A friend of ours took our family and some of our very close friends to LEGOLAND a few weeks ago. This is one of the first theme parks Francesco has ever been to. We tried to go on a ride but Im sad to say that Franco screamed the entire time (it was like a choo choo train).
Although, Francesco didnt like the rides, he got a chance to spend time with his friends. It put a smile on our faces to see how much he has over come in the past year!
In not done just yet…
Francesco has been going to therapy classes at the same place for over a year now. One of the teachers told me that she had to restrain his arms because he refused to point to body parts on a doll (Mind you, he doesn’t know body parts yet!). Dom and I sat down and talked with both the owner and teacher.
They claim that they did not do anything wrong. We pulled Franco from his therapy classes and are in the process of getting him into new classes. As a parent, this is the last thing that you want to happen to your child… we are furious!
I have contacted the insurance company and put in a complaint about this company. We are also looking into the laws on restraints here in Florida!
These pictures below are of both Francescos x-ray (The first one) and a “normal” three year olds x-ray (the one on the bottom). If you look close, you can clearly see that his little bones haven’t formed
Francesos vision has remained the same. We feel that he may be able to see some color but we are unsure. He seems to be doing great with the vision that he has. The little guy doesnt want to talk… I feel like he REFUSES to speak so we take it one day at a time!
His form of communicating is to grab us by the hands and direct us to where/what he wants (for instance- the kitchen-hes usually hungry or thirsty). Francesco is also having tummy issues, another downer of having ONH/SOD, his poor bowels don’t flow as well as they should. I was told that this is a big problem in kids that have the ONH/SOD.
Besides all of this madness, we are now preparing for Halloween. No costume has been chosen just yet, but Im sure he’ll look amazing in whatever we pick out for him!
I have also added some new photos but I am still having an issue with the videos!
I can’t believe the month of August is over…
Our baby turned three a few weeks ago! We decided to have a small party with close family and my best friend who joined us from North Carolina. As much as Francesco hated it, we sang “HAPPY BIRTHDAY” to him and of course he screamed until we stopped!!
Doms birthday was just a few days later. His cousin from PA had come to Florida for the week so we invited him over for Doms special “birthday dinner. All he wanted was Chicken Parm and a carvel cake… so that’s what I did. The guy is just so hard to please J
This month we were invited to an 80’s themed birthday party where we had to dress up. Our friends daughter was turning 12 and all she wanted for her birthday was an 80’s themed party so her parents turned the house into a “night club” and played nothing but 80’s music. As always, when we get invited to a party, we usually go but we usually don’t stay too long because of Francesco. When we go to any event that has a number of people, he usually screams and cries so we end up leaving. These friends of ours have 4 kids and we have been invited to each child’s birthday party but never seem to last more than an hour or two without Franco screaming… This time we were able to stay the entire day. Francesco had his moments but ended up dancing with his dad and Uncle Frankie. He also played with a few of the kids that were at this party. Dom and I were so excited. When we get invited to go places, I usually have a panic attack before we leave the house. I often get worried that Francesco will be miserable. Lucky for us, this time he did great… and HE WAS HAPPY!!! This is as HUGE step for him so I couldn’t help but share!!
Francesco is doing great using the vision that he has. Miss Diane (Vision Teacher) comes to our house once a week for an hour. She has him on a schedule so when she arrives; he has an idea of what’s ahead. This schedule includes walking to our mailbox so we can meet up with Miss Diane, in the mailbox she will place an object that will start our session (book, blocks). Francesco is asked to open the mailbox where he will grab the object and bring it in the house then he sits down in the living room and we start our session. We also sing songs (usually hates it), practice taking turns (usually with a ball). Miss Diane always ends the session with kind words, hugs and a “goodbye” song. Dom and I LOVE her!!
Another HUGE step for Francesco was to learn how to go down the slide! We have tried to get Franco to play on the slide but never seemed to like it. I’m happy to say that he is now a big fan of the slide!
September is here. I have been dreading this month for the past 6 months. Francesco has to get blood work within the next couple of days (which always makes me sad) and has an endo appointment on the 26th. This endo appointment will be “the appointment” to determine whether or not Franco will need to get Growth Hormone injections. Our last visit to the endo, Franco was in the 25th percentile range in both height and weight. This means that he’s a lot smaller than he should be. In the past 6 months we have noticed a very tiny growth spurt but are preparing for the unsettling news on the 26th.
On a light note, Francesco is no longer in a crib 🙂 He is now in a toddler bed and love, love, loves it!
Francesco did a wonderful job at the ophthalmologist today! This was our second trip to the eye doctor since we have been home from China. The appointment went well but it seems as if his vision is about the same. Dr. Ikeada says that Francesco’s right eye hasn’t changed but his left eye seems to be improving slowly. The ophthalmologist says that although his left eye is improving, it has not improved enough to get Francesco a stronger eye glass prescription. Our next visit isn’t for six months…
I think it’s safe to say that we can’t ask for much more. We have a very healthy, crazy child. He keeps us on our toes and we wouldn’t change it for the world. Francesco is such a pleasure to be around these days, he hardly screams around load noises and children and is always full of smiles and laughter. Dom and I are lucky to have such and amazing little boy.
The closer we get to the end of the month, the more excited we get… Francesco will be three soon. We are planning a birthday party on top of getting him ready for school. It seems like just yesterday he was born; it’s crazy how fast they grow up! Franco is still in all of his classes (OT,PT,SPEECH,VISION,O&M) throughout the week and is doing amazing; he seems to enjoy all of them now, more than ever!
When Francesco was two months old we were told that he was blind (with optic nerve hypoplasia), that glasses wouldn’t help, and that he would never be able to see, drive a car, or walk without a cane.
As Franco got older, we did everything we could to strengthen his optic nerve, but finally settled on stem cell treatment in China. Before we left for China, we went to the two ophthalmologists who told us that his eye measurements were a -6.00 in the left eye and a -4.00 in the right eye (really bad) and that nothing could help his vision.
After months of planning, hours of flying, and 50,000 stem cells later, we are now able to share a success story:
When we returned, two weeks later Franco’s had his first post-stem cell ophthalmology appointment. I was both excited and nervous to hear good news, hopefully. Needless to say, the drive to the office was intense.
For the first time, Franco calmly sat through an ophthalmology visit. After she examined him, she told me that Franco’s left and right eye were -4.00 and the -3.50 (a big improvement). Surprisingly, she recommended glasses for Franco! I started to cry, knowing that my son’s vision had improved.
Francesco has done so much since we’ve been home. A few things we’ve really noticed once we put his new glasses on was the way he would try to focus on an item, rather than putting it right up to his eyes, he would turn his head to the left then right (as if he were shaking his head “no”). He still walks with “Tom” (his cane) but lately he has been using echolocation, a “clicking” techniques his vision teacher taught him.
Franco has been doing pretty good getting around, he takes his time when he walks and if he doesn’t feel comfortable in certain situations then he holds out his hand for assistance.
Francesco is a very independent little guy for sure; he tries to do everything on his own. We go for walks often and explore the neighborhood (trees, grass, different sounds) and he really enjoys being outside and walking with Tom although he tends to use him as a sword rather than a walking stick! He’ll sometimes run into walls, chairs, and other things, but then he’ll run into his playroom and find a toy without hesitation.
Franco still doesn’t talk, so it’s hard to explain his vision. It is very clear that he can see something but at this point it’s up in the air. His vision has improved so much in the past year and is only getting better. He’s very smart. And while he can’t just yet talk, he mimics every single toy he owns, certain songs and beats , and he loves trying to say the alphabet.
We always knew that there was a chance for Francesco’s optic nerve to grow but we never expected him to see as much as he does. It has been a crazy year to say the least. Franco has had a number of appointments since we have been home from China and although the stem cells seem to be working on his eyes, they haven’t played a part in the growth hormone department.
We went to the endocrinologist a few weeks ago where our doctor told us that Francesco is not growing at the rate that he should be. In a few months, we’ll revisit him to determine if the stem cells are kicking in.
When Franco was born, his pituitary gland shifted leaving room for growth hormone problems, seizures, and other issues. The doctors have been unable to determine whether or not he might have any growth issues until now. Our endo decided to take an x-ray of Francesco’s hand last June and plan to do another this September to determine if his bones are growing the way they should be.
Our little guy is your typical (almost) 3 year old boy! He is madly in love with Rihanna and gets excited every time he hears her voice. Francesco is also a big fan of classical music, nature sounds, and Kenny G. He loves his dinosaurs, musical toys and most importantly, his best friend “Scout”. He loves to ride his 4 wheeler around the yard and is practicing how to pedal his new tricycle.
We are working on Francesco feeding himself along with trying to hold crayons and use finger paints. Francesco does not enjoy loud noises nor does he like the sounds of children laughing and playing (yes, it’s true), but we are working on that too and hope that by the end of the year he will have improved.
For those of you who donate to our China fund and supported us in other ways, thank you. We will continue to update you on Franco’s life through this site.
“The best and most beautiful things in this world cannot be seen nor touched but are felt with by the heart” – Helen Keller
Dear Friends & Family,
The Novello family has finally returned to the states 🙂
Domenick and I would like to thank you for all of your love and support throughout this process. Although it was a long and stressful journey, it was definitely worth every minute. Franco did amazing on all of the flights except for the return flight, he screamed 10 out of the 14 hours (believe it!). You could tell that he was ready to be home; a few days before we left he started to get very cranky and irritated. I think it’s safe to say that he enjoyed the trip a bit; he was able to meet new people and be around kids. The hospital was 9 floors of complete chaos; the people run everywhere (they really do). When we first got to the hospital it was 11:30pm and was empty which was very odd for me, I’m use to seeing a jam packed hospital especially at night. We got to our room and were ready to fall asleep because we were so drained, they didn’t give us a crib so I had to sleep with Francesco the first night. Our beds were hard as hell because it was only a box spring with very light padding and our room smelled of cat urine and mold… comes to find out the smell was from the pipes. The next day we woke up and went shopping for cleaning supplies, towels, air fresheners and food at the local RT Mart. The stores there are PACKED, people would stop and stare at you and your child but 99% of the time they were looking at Dom because of his dam lumberjack beard. That afternoon we received a schedule for each treatment.
The first treatment Franco received was on Jan 30th; we had already been in China for 4 days and were trying to adjust to the time change. This treatment was the “worst” for both Dominick and I, Franco had to get his blood drawn prior to getting the stem cells so that was a mission in itself, then they needed to place and IV in his hand for the actual treatment. On his first day of treatment he got stuck 3 separate times, now if you look in the photos that I took, you can see him screaming… it took 3 nurses and Domenick to hold him down (I was crying as I took the photo). We went upstairs to the 9th floor where the give the IV’s, we were sure to bring all of his favorite toys, his dvd player, blanket and juice to make him as comfortable as possible… he did much better than we expected, he didn’t scream or cry until they flushed his needle (it was cold). Francesco didn’t have a reaction to the stem cells so it put a smile on our face, actually after he got the first packet he was full of smiles, giggling like crazy!
The second treatment was on Feb 1st. Franco did great!! The very next day we noticed his nystagmus had slowed down so much to the point where it almost stopped completely, especially when he tried to focus… this was a big thing for me, I look into his little cookie monster eyes all the time and hope that one day I just might be able to see if he is actually trying to focus 🙂 It was amazing, it really was. Such a great feeling it put tears to my eyes. I said to myself if that’s all we get out of this trip then it was worth it!! They started his therapy, which he had every morning for about an hour. The therapist did a massage on his face, fire cupping and electric wave therapy. He hated every minute of these therapies, it was so new to him, he had no clue what was going on. I felt horrible as I shot videos and snapped pictures, he was sad but I wanted to capture every moment.
The third treatment was on Feb 3. Once again he did great, after his second treatment he acted like he has done this a million times, no crying or whining! His therapies started to get a bit easier, they had decided to do them in our room so he would feel a bit more comfortable so we put on baby Einstein dvd’s for him so he could listen to the music while he sucked on his juice and rubbed his blanket.
—> They took out the IV from his hand and then re did it again in his foot the very next day. The nurses stuck him 4 different times, they came into our room and tried twice and failed so I told them to leave and get it together. They had come back a few hours later and tried again, they stuck him twice and finally got it. I tried to tell them where to put the needle but they looked at me like I had 6 heads. They finally got it in his foot, he wasn’t happy about that and neither were we, he wasn’t able to wear shoes so we weren’t able to leave the hospital (it was in the 20’s).
The fourth treatment went well. At some point Francesco started to explore the different things in the lounge area, he walked up to the flower’s and grabbed them and then climbed up on the couch and started to reach for a picture on the wall… at this time, he had been in China for about two weeks and he had never done that before, is it in my head?
The fifth and sixth treatments were done on the same day on Feb 8th; he was a bit cranky because of the lack of sleep. He was ready to go home… we could tell.
The seventh and final treatment was on Feb 10th, just two days before we left. He did great once again; he played with a toy as I sat there in excitement. I was ready to go home myself, I was ready for these treatments and therapies to be over, I was READY!
Dom and I went out with the other families in the hospital here and there. If we ever went out, we either had a ‘boy’s day” or a “girls day”, none of the families wanted to take a chance with the kids going outside, it was freezing most days. We always went to dinner together and had “coffee thirty” at 7:30am and “beer thirty” at 6:30pm, we discussed our friends and families and our lives back at home. I’m happy to say that I was around people that were just like us, people that understood what it’s like to have a family member with a disability. Our new friend’s from Ohio, The Opp family were amazing… their son’s name is Konnor aka “Konn-O”; he was born with SOD, completely blind and unable to talk, walk, stand up or crawl. Konnor made me open my eye’s to a lot of things. Watching him with his mom and dad was a true gift, they are such amazing parents!! On one of our last days in China, we got the pleasure of seeing “Konn-O” stand for the first time, to see the look on everyone’s face when he did it will be in my mind forever, the smiles, the tears… it was so awesome. I appreciate them for all of the hard work and all the time and effort they put into raising their son; it makes me realize how lucky we are to have such an amazing little boy! I never thought I would be sad leaving China, but I sure was. I cried the entire way to the airport, I was sad because of the fact that I wouldn’t have these wonderful people surrounding on a daily basis. Before I left for China, I was depressed and stressed to the point where I wanted to give up, but after this trip, that has all changed thanks to everyone that helped us get to China! My life has been changed for the better. Dom and I are glad that we made the decision to get these treatments done; we feel that it has already started to help Franco (although it could take up to a year).
Francesco has an ophthalmologist appointment on Feb 24th; this will be the first of many. I will be sure to update everyone as much as possible. If anyone has any questions or concerns, feel free to contact me.
Thanks again for all of your support, without you; we wouldn’t have gone to China!