| 06-14-08: We haven't posted any news for a little while, because there has been so much going on. First off, Riley developed an infection in one of the incision's from the surgery. As of today the doctors feel that everything is ok and it isn't getting worse so it seems as if it is all gone. We have been making quite a few trips into NYU in the past 3 weeks to have the infection checked as well as the tightening of the wires that secure his splint in his mouth. As of yesterday, everything looks great and he is doing very well. Some of the best news is that Riley is now able to get around pretty well. He is walking, and running around keeping us on our toes and because of this he is much happier now. His communication and ability to talk is outstanding considering he has his mouth wired shut. He has been unbelievably strong and we are extremely proud of him. 05-30-08: Riley had a visit to the plastic surgeon today in NYC, and everything looks great. His incision's have no sign of infection, and are healing well. The swelling that is still present is normal. Riley is still unable to walk due to the soreness from where the bone was taken, but according to the doctor that is normal. He said it may be a few weeks before Riley is able to be up and around on his feet. So medically Riley is doing great, and the only hurdle we still have is trying to keep him hydrated and his calories up. He lost a bit of weight from the hospital stay, and if you previously knew Riley you already know he was already small to begin with. So probably the toughest challenge during the next 7 weeks will be to get enough calories into liquid form. Sounds easy right? Not when you have the pickiest eater known to man. So we have an appointment with a Nutritionist tomorrow and we'll take it from there. 05-27-08: OK, SO I WASN'T KIDDING ABOUT RILEY BEING AMAZING !!! The doctors told us he would have to be in the hospital for 10-14 days. Riley, just progressed unbelievably and instead only needed 6 days. Yup !!! you heard it, today they took x-rays, and checked out his splint. Riley was drinking liquids ahead of schedule and basically they asked us how we felt if we went home today. Obviously that felt good and now here we are at home today. Riley is doing awesome and making us proud every moment. In fact Riley asked us to stop at Toys R Us in Times square before we went home, obviously he deserved it so thats where we went. So thanks to everyone who has been keeping up with Riley's progress throughout. The surgery and hospital was definitely difficult but the hardest part has just just began. We will keep everyone posted as to how he is doing. Thank you again 05-25-08: Today Riley was moved out of ICU and put into a regular room in the pediatric unit. He is making progress pretty well and all of the docs are pleased so far with where he is. He has been drinking apple juice and chocolate flavored carnation instant breakfast. We have some appointments in the next two days with all of the doctors, and they have mentioned a possible early discharge. We are going to cross our fingers and we'll see what happens. Riley is really coming around and getting back to himself more everyday. It's a bit difficult to communicate sometimes, and he is not able to walk yet because of the bone graft. Hopefully he will be back jumping around in no time and then I am sure he can't wait. This is definitely going to be a difficult task, but at each days end we are one step closer to the end. We will send another update if we hear anything. We were also able to take a picture today that is pretty nice considering how scary it was a few days ago. This boy is seriously amazing and everyone who knows him has already found out for themselves. 05-24-08: Already at 8:36 a.m., today has been the best day thus far. The docs met with us this morning at 7 a.m. and re-evaluated Riley. And the decision was to go ahead and remove the breathing tubes. So that was the best news we have heard in a few days. Shortly afterwards the tubes were removed without any complications and Riley is now breathing completely on his own and looking great. This kid is definitely a fighter and has amazed the entire nursing staff for how strong he is. So at this point we are still waiting for him to come out of the sedation a little more and then he should open his eyes and be a little more like himself. He still has the feeding tube in and will be on some pretty good pain medication for a while but all in all he is doing awesome. So we are extremely proud of our "little champ". If there is even more good news as the day progresses we will update everyone as it comes. 05-23-08: Today there is a bit better news, than yesterday. Even though there is not much to report it is still good news. Riley still has some swelling in his throat that is constricting the breathing tube. So the docs decided it would be too risky to remove the tubs today, and they will try again tomorrow. So the plan is similar to today's plan.... a meeting to re-evaluate the risk of removing them tomorrow at 7:00 am. The good news for today is that unlike yesterday, he has been completely calm, and stable for pretty much the whole day. The nurses at the pediatric Intensive Car Unit are truly some of the best nurses I have ever seen. Especially Riley's nurses, they have been the best without a doubt. So, I will update everyone tomorrow morning to let everyone know if they removed the tubes or not. Thank you again for your support. 05-22-08: Well the saying "No news is good news" is not always the case apparently. We were unable to post an update yesterday, because there was so much going on. Riley had a great 1st night in ICU, not much went on which was good. The doctors came up to see Riley and check him out and they decided that he had made progress so quick, and they will consider removing the breathing tubes. So the plan was at 1p.m. they will come to evaluate Riley and make the decision at that time. So 1p.m. came pretty quickly but there was some swelling and it wouldn't be safe to remove them. So they are going to re-evaluate him tomorrow. So the rest of the day should have been real easy because the plan was to keep him sedated and comfortable. Unfortunately this was not as easy as it seemed. For the next 5 hours or so the ICU doctors and nurses tried just about everything possible to try and make him comfortable. To make a very long and upsetting story short, he finally was stabilized and comfortable. If everything stays the same over night we have a meeting with all the docs at 7 am. Hopefully we will be able to get those tubes out at that time. Thank you for reading our update and thank you for your support. Please check back soon for another update. 05-21-08: (Part 3) We saw Riley in the ICU, and he looks great. He is still sedated and will be for a few days. He still has a breathing tube in and if all goes well he will have that out tomorrow. He did awesome and he is a real strong little boy. We will be with him from now on right at his side and we will give you more updates as they come. Again thank you for your support, and look for more updates soon. 05-21-08: (Part 2) We just spoke with Riley's surgeon, and everything went very well according to him. Riley did a great job and is going to be moved to ICU shortly to be monitored for at least three days. Then eventually he will be moved into a regular room. The surgery was going a little bit longer than expected so, they decided not to remove the skin tags at this time. They do plan to do so, when the splint is removed in 8wks. We will be able to see Riley very soon and I will send another update at that time. Talk to everyone soon, and thank you for your support. 05-21-08: Great News !! Riley went into the O.R. a little before 9 a.m. this morning. We heard from the Anesthesiologist about an hour or so later and she said everything went well when they intibated him. The great news is....she said his airway seems to be sufficient enough and they don't have to do a tracheotomy which was huge concern.... Just now I heard from the pediatric nurse coordinator and she said they were able to start the operation at around 10 a.m. At this point they have the mandible exposed and are custom fitting the splint that will be wired into his mouth. After that they will do the bone graft and insert that bone into the jaw and wire it shut. Lastly they will remove the skin tags by his ears. They estimate the total surgery to take about 8 hrs. Though it may be even longer. Riley has done awesome so far and has made us extremely proud. He is such a strong kid !!! Thank you all for being such great family and friends, we are truly lucky to have your support. Please check back soon for more updates. 05-20-08: With only one more day until the surgery, Riley has been trying to have as much fun as possible while he can. Our good friend Rich from R.B. Eye Inc. gave us awesome tickets to the Mets game. If you don't know already, Riley loves the Mets. In fact he doesn't leave the house without his favorite New York Mets hat. So we would like to thank Rich for making it possible for us to take Riley to his first baseball game. It was a beautiful day, a great game, and a lot of fun dancing and cheering with his Grandpa John. Riley will always be able to say he was at shea stadium in its last year. He can't wait until next year so he can visit the new Citi park. So tomorrow is the day, and we are getting ready for it (if that is even possible). We are going into New York tonight and will be staying there until Riley is discharged. We are going to update the site as much as possible throughout this time. Please check back often to get updates on Riley's progress. Again thank you for reading and keeping up to date, and thank you for your support. 05-07-08: Ok, so everything is moving right along with Riley's surgery. We are counting down the days until the 21st and our schedule is getting more and more hectic by the day. We have been meeting with all the doctors involved in this surgery for pre-op appointments and etc. So from now on it seems as if we are going to NYU twice a week until the surgery, and then afterwards there will be just as many post-op appointments. The plan is still the same, Riley will have bone taken from his hip and the doctors will make a piece that will fit into his jaw and then he will have a splint wired in to keep his jaw from moving before it heels for about 8 weeks. Riley is doing great, having as much fun as possible now and is as happy as ever. We are looking forward to the surgery to some extent, although very nervous at the same time. We want to thank everyone who keeps us in their prayers, and thoughts. Riley is very fortunate to have such a great deal of support from our family and friends. We will try to keep this section updated as much as possible up to and throughout the surgery. Thank you for reading this and keeping up to date. 02-20-08: It has been quite some time since the last update, mostly because medically there has been nothing to report until now. We had a scheduled visit with Riley's craniofacial team and after their evaluation they decided that it was time to re-schedule the surgery that was postponed. The next week we knew they meant business, because we received a phone call to confirm the date which will be May 21st. Within the same week we scheduled a visit with the pediatric dentist so he can get started on making a splint for Riley's jaw. The splint will hold the jaw exactly in place and will provide enough room for the bone graft to be inserted where it is missing. Riley will have his teeth wired together for eight weeks after the surgery. So the next step for us is to have a CT scan done to help measure how much correction must be done. We have another evaluation with Riley's ENT doctor and possibly another consult with his Ophthalmologist to see if they will be involved in this surgery. We will keep you posted now that there will be much more to report from now until May. Riley also turned 3yrs old on Dec. 27th, and obviously Christmas was just two days prior. So between the two Riley has been keeping busy with lots of new toys. He can't wait until the spring so he can ride his new bmx bike and his powerwheels quad.
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