Sunday, December 6, 2009

Road Trip!!

It's Sunday, late morning and I am in the playroom watching Lucy play pretend and Hank and Charlie play video games. Just a normal weekend in the Gibbs' household. Except it's anything, but "normal". This isn't our playroom...and those aren't our video games...and this isn't the Gibbs' household!

We are in Connecticut, where we have spent the last two days with our friends, Patty and Larry Richard and their sons, Sean and Kyle. Getting out of the city, was just what Hank needed to recuperate. He has forgotten about his surgery and is enjoying being a kid, surrounded by people who completely understand all he has endured. The Richard family has spent many years dealing with the effects of Parry Romberg Syndrome. Their son, Kyle, has had the same surgeries as Hank. It is such a great gift to be able to spend time with people who truly understand what we are going through!

Hank's revision surgery was such a different experience than his 8 hour free-flap surgery in July. I expected a tough recovery, but so far it has been relatively easy. Hank is one resilient kid! Thursday was the day after surgery and also the day that Hank's surgeon, Dr. Siebert, was heading out of town. I was a little concerned about nursing Hank back to health all on our own with out a follow-up appointment until Tuesday. How would I know if he was looking as he should?

I called Dr. Siebert's office and asked if we could get in to see him before he leaves. "He's leaving the office at 11:45 am," Dee, his receptionist told me. I looked at the clock...11:03 and we are in pajamas...."OK, I said...we will be right there." Hank and I quickly got dressed, threw on our coats and ran outside to catch a cab. Fifteen minutes later we were sitting in the exam room with Dr. Siebert. "Hey big guy!" he said to Hank, as they gave each other a high-five. "How are you feeling?" "Good!" Hank replied. "You look great!" Dr. Siebert announced. He said that the swelling might get a little more pronounced, but that was normal and his eye might even swell shut. But not to worry...and to keep the incision over his eye lubricated with polysporin. "He's going to look fantastic!" he assured us.

Hank looked at Dr. Siebert and asked, "When can I go see Kyle?" I smiled to myself as I watched the doctor deflate just a little bit. He had told me the day before that Hank could not go to Connecticut to see Kyle because he was too active when there. I promised that we were just going to lay around, play Legos and watch movies. "Well, if that's the case, you can go on Saturday," he said with a grin. "ALL RIGHT!" Hank replied. I was so relieved. I knew that Hank wanted to see Kyle and his family, more than anything. And Lucy had been asking us "when can I meet Larry?" (although I don't know if she realized Larry is the dad...) Let's face it, our entire family would be very disappointed if we didn't get to see the Richard's!

We gave Dr. Siebert hugs, said goodbye to his staff, Nilsa and Dee, and went out and caught a cab. "You know, I am feeling pretty good," Hank confided, "Let's go to the Museum of Natural History today!" I thought about it for a split-second, and then remembered that Hank had surgery YESTERDAY, and no way would we be going anywhere! When we got back to the apartment, Hank laid down on the couch, "I'm tired," he said. And I knew that laying low was exactly what he needed.

I filled Jeff in on what Dr. Siebert said and called Patty Richard to let her know. I got a text message from her later that said, "My family wants to see your family...we're coming to get you tomorrow!" OK, so it was a day earlier than the doctor said, but as Patty and I discussed....they were coming in the evening...and really...what's the difference between sitting on a couch and resting and sitting in a car and resting? Same thing, right? Well, at least that was the logic we used to make our plans!

We didn't say anything to the kids about our upcoming trip and just concentrated on keeping Hank quiet and resting. We played cards, watched TV, the kids played on their hand-held video games. And Jeff and I were right there with them. I did make quite a few trip up to the laundry done...lots of washers and dryers made quick work of it!

In my effort to keep Christmas alive and well for the kids while we are traveling, I brought along some snowman appliques for the kids to decorate the apartment with. Three snowmen, three kids...great idea...or not! The snowmen weren't the same was a was really small...and so the whining began! UGH! So much for a fun family project! But after they realized that they could dress and re-dress the snowmen, everyone settled down and had a fun time!

Friday morning we got up and Jeff and I picked up the apartment and got our things together for the trip to Connecticut. The kids played together and didn't seem to even notice that we were packing! We stayed in until afternoon and the piled ourselves into a taxi made for four passengers...and headed up to 5th avenue where all the stores are. We didn't tell them where they were going, so the whole ride, Hank kept asking, "Where are we going, again?" We made them guess and I can't believe none of them got it right. What they didn't know, was that we were heading to "Build-a-Bear," a store where the kids can pick out a stuffed animal and actually stuff it themselves, dress it, and adopt it. Kind of silly, but they really love it! And the store in NYC is huge!

The kids had such a great time and we didn't even mind that it was crowded and the lines were long. Hank picked out a frog, which he named, "Warty" and dressed as Luke Skywalker from Star Wars. Charlie's choice was a wolf, which he dressed as Darth Vader, also from Star Wars and named it "Wolf Vader". (so clever) And Lucy decided on a cinnamon colored bunny which she dressed as a fairy, but put cheetah-print Maryjane shoes on, and is now called "Beautiful". I think it is so fun to see their different personalities and creativity shine through on things like this. They each have their own mind and pick what they want!
It was dark by the time we left Build-a-Bear, and headed out. Patty had sent me a text message that they were on their way, so I thought we had a couple of hours to kill. I had the bright idea to go look at the windows at Macy's and herded the family in that direction. But I must have had a brain hiccup...we were on 46th street and in my mind, it was just two blocks down and two blocks over...but it wasn't on 44th was on 34th Street! So the hike had been in vain! With the energy flagging and the stomachs rumbling, we stopped into a McDonald's to get the kids a quick snack. We ended up on the third floor of the restaurant, where the kids happily dug into their not-so-nutritious meal. I received a text message from Patty that said they were getting close. "EEK! I thought...we are not going to be there when they arrive!" I showed the text to Jeff and we started hustling the kids out. Done or not...we had to go!

We headed out the door and down the street, where Radio City Music Hall stood out against the night sky. The streets were crowded with people and traffic was congested, so we headed for a side street to catch a cab. We found ourselves among even more people and smack in the middle of Rockefeller Center and the gigantic and beautiful Christmas tree! It felt like everyone in NYC picked the exact same moment to view the tree and it was a little daunting to make sure we had all three kids in sight. But we stayed for a minute and took some pictures. It is truly a remarkable sight and I am excited that we got to see it.

We pushed through the crowd and made out way out onto a busy street. We quickly hailed a cab and made our way down to the apartment. Patty and Larry had arrived at the apartment and were waiting for us. I was very eager to see them and did not want them to have to wait for us. The kids still did not know that they were picking us up, and I couldn't wait to see Hank's reaction. The cab ride took longer than expected and with five people crammed into a small cab with bulky jackets, my purse and three big "Build-a-Bear" boxes, it was less than comfortable.

We pulled up to the apartment and I saw a vehicle in the loading zone with a police parking enforcement vehicle parked alongside. Uh-oh...this can't be good. I could only imagine how stressed Larry would be feeling. We piled out of the cab just as Patty came out of the SUV. I smiled at Patty and watched Hank to see his reaction. I saw him catch Patty out of the corner of his eye. He looked at me. He did a double take and looked at Patty. He looked at me. "Hank, who is that?" I asked. "Is that Patty?!" he asked. He looked again and then yelled, "It IS Patty! and Larry too!" He was so confused...what were they doing there? "Hank, they are picking us up to go to their house!" I told him. "Tonight? Right now?" he said as he turned and gave Patty a huge hug. Hugs all around and then we were racing into the apartment to grab our bags. They had told the police officer that they were picking up a patient, and were given the OK to stay where they were. We moved as quickly as possible, and before I knew it, we were loaded in and ready to go.
Hank and Charlie were in the third row of seat, with jackets, blankets and stuffed animals between them. They couldn't see each other, and I am pretty sure that Charlie couldn't see out the window. Lucy sat sandwiched between Patty and I in the second row, and Jeff rode shotgun, with Larry at the wheel. Larry maneuvered us out of the city and we were on our way. The boys fell asleep in the back and Lucy kept Patty and I entertained with her "i-pod" toy for her new bunny animal.

We stopped for dinner, and had a fun time as the kids and Jeff got acquainted with Larry and Patty. Lucy usually takes a little while to warm up to people, but she quickly felt comfortable with those two. Charlie sat next to Larry and I could see they were already fast friends. I sat there feeling so happy and grateful that Jeff, Charlie and Lucy were getting the chance to meet the Richard's. And I couldn't believe we were with them! What a wonderful treat!

After dinner, we got back on the road, and a half hour later, we were driving up their driveway, and being greeted by "Mocha" their friendly chocolate lab. Hank was out of the car in a flash. Hugging Mocha and heading for the house. He was greeted by 14-year old Sean and 20-year old Kyle...the Richard offspring. Hank loves them so much and has a special bond with them. Their friendship and support aided his recovery after his last surgery and Hank will never forget it. He considers them his friends and big brothers and with Kyle experiencing the same condition...Hank looks up to him, and the bond extends beyond what I, or anyone else, could understand.

The Richard's had gifts for each of our children, with the boys receiving "Hess" cars and Lucy getting a little dog in a purse that you can decorate. They were so thrilled. But I feel so bad, as I did not plan to arrive here empty-handed. In fact, I ordered something for them to send to them prior to their arrival, but it did not arrive at our house until we arrived in New York. It is now sitting at my sister's house, waiting for our return. Oh will arrive to them at Christmas! Good intentions.... (Jeff did make up for it the next day with a bottle of Grey Goose Vodka for Larry)

We finally got everyone settled down for bed, with all three Gibbs' kids in the playroom. Patty, Kyle, Jeff and I stayed up late talking, and then headed off to bed. We had such a great night's sleep and everyone woke up happy. Saturday, we just laid low, with Lucy and Jeff decorating her new puppy purse, and the boys playing with their new cars, video games, and anything else they could get their hands on!

Larry and Patty arranged for Sean and Kyle and Kyle's girlfriend Liz, to watch our kids, so that we could go out and have a nice adult dinner. What a treat! Liz's parents, Rob and Anna, came too, and we had such a nice time. Although I found myself on the verge of tears as we sat at the table...worried about Hank. Just three days out of surgery...the power had been flickering, as the first snow was falling, and I had caught Hank messing with the fireplace not once, but twice before we left. Jeff and I were hard on him and he cried, which made me feel terrible! So Patty called the house and checked on them. They had just settled down together to watch a movie, and all was well. And I released the breath I was holding and was able to truly have a great time! Lots of laughter and funny stories!

We returned to find that the little kids had outlasted the older kids! Everyone was happy and had a great time. We got the kids and ourselves to bed, in preparation of an early rising time, to make it to church.

And that brings us to today. Got everyone up and out the door for 9:00 am Mass. It was cold, with snow on the ground, but the church was crowded and warm. We had to take two vehicles and Hank happily rode in the truck with Larry and Sean. In fact, I didn't even know he had left! We came next and were able to all sit in the same pew.

As I sat there, looking around family and the Richard family, together in prayer. I felt my heart swell with gratitude....that we had been brought together with this family...that if not for Hank and Kyle having Parry Romberg Syndrome...we would never have met. Gratitude that Hank's surgery went well and he was getting a chance to recuperate with this family who understands him. Who understand what Jeff and I have been through. And a sibling in Sean, who understands how Lucy and Charlie feel. What an amazing gift we have been given!

As luck would have it, they were selling donuts after church, which is exactly what the kids wanted for breakfast! We purchased a box and headed back to the Richard's home. Donuts consumed, the kids headed upstairs for playtime in the playroom. Which brings us back to when I started this! Hank's follow up appointment is Tuesday morning, when he will get out the stitches above his eye and the plastic off his face.

Another day of recovery ahead of on TV, games with the kids...just a nice easy day, with beautiful scenery around us...a warm fire...and fun friends! Just what the doctor ordered!

Wednesday, December 2, 2009

Revision Surgery Day!

Today started bright and early. Jeff was up at 6:00 and I was up at 6:30am...brutal since I went to bed at about 3am and found I just couldn't sleep. Too much adrenaline the night before surgery...
We got the kids up shortly before we had to leave to head to the hospital. Hank couldn't eat or drink anything and we wanted to make it as easy as possible for him. We got everyone dressed and headed out the door to catch a cab, which isn't easy when you have 5 people and must wait for a van-sized taxi! This time, the surgery was at Lennox Hospital, which is out-patient only.

It's also called "The Manhattan Ear, Nose and Throat Hospital" and was established in 1858...a beautiful brick building on the upper East Side. It was a really nice place for Hank to have surgery.

We checked in and planted ourselves in the waiting room. Kids, jackets, Ugly Dolls, books...we were set to wait awhile! They finally called Hank's name and would only allow me to accompany him until he was shown into a surgical prep room.

We were taken into a small room by nurse Margie, where Hank could change his clothes. They actually had a kid-sized gown and kid size lounge pants for him. Very nice, since last time he was swimming in his gown. I bagged up Hank's clothes and jacket and stowed them in the locker assigned to us. However, I failed to actually look at the locker number and for the rest of the day when they asked me what locker we had, I would just stare at them blankly.

We were then walked around the corner and Hank sat down in a sheet covered recliner and given a warm blanket to drape over him. The admitting nurse, Adele, introduced herself and proceeded to ask a lot of health questions. She took all of Hank's vitals and asked him if he knew why he was there. She verified Hank's identity and asked him to spell his name. Hank's legal name is "Henry" and that is what was written on all her documentation. "H-E-N-E-R-Y," he told her. Hmm ...she looked at me, "Is that right? E-R-Y?" "No, no," I replied, "he just never goes by that name and is not sure how to spell it." We told her he goes by Hank and for the rest of the day, he was called Hank, thanks to the yellow post it note on his folder that said, "Call me Hank!"

After Adele finished with us, she told me that she would wait with Hank, while I went out and got Jeff and the little ones. I found them in the lobby, Jeff sitting with two sleeping children. I stayed in the lobby while Jeff went in to see Hank. This would be the only chance for Jeff, Lucy and Charlie to see Hank before he went upstairs for surgery, as they don't allow children up there. I felt so bad for the little ones, that they would miss their chance to hug Hank and he wouldn't have a chance to see them. And I was wondering if I should wake them up, when they both opened their eyes and sat up! I grabbed them and quickly walked them back to see Hank.

They were all happy to see each other and I could see the wheels spinning in their little heads, wondering why Hank was wearing pajamas and was in a bed. The nurse brought us an extra chair and we crowded into the little room. All three of them had their new "Ugly Dolls" and Hank entertained them with the dolls, putting on a little show and making them laugh. It struck me, that here is Hank in need of attention, and he is putting his siblings first. I made a mental note to remember that...and to recognize what a good brother he is...proud moment...!

After about 20 minutes, two nurses came in and said it was time to take Hank up to the surgical floor. They had given me a blue surgical suit (also known as the "Bunny Suit") to put on over my clothes and stood there while I put it on...I would like to say I did it smoothly and with grace...but not the case, as I tried to balance on one foot while strategically placing my boot-clad foot through the jumpsuit pant leg. Charlie and Lucy and Jeff all said their goodbyes, and I promised Jeff I would text him to keep him in the loop. They took us upstairs to the second floor to the surgical waiting area. We had a very nice and attentive male nurse. He set Hank up in a recliner and then brought over a portable DVD player with a movie, for him to watch.

As Hank and I sat there watching "Curious George" on the player, a man wearing scrubs came up and said hello. He introduced himself as the anesthesiologist. He started talking to Hank, asking him what kind of surgery he was having. He asked Hank if he remembered anything from his previous surgery. Hank told him that he remembers being wheeled into the operating room and the mask over his face, as well as the ceiling. I was blown away! I didn't think he remembered anything! After the dose of "loopy juice" that made his eyes glaze over and compelled him to say, "Let's get this party started!" while throwing up a rock star fist, I didn't think he even knew where he was!

The anesthesiologist was a very personable man, and did not talk down to Hank, which is always appreciated. He asked Hank if he had any questions or concerns. Hank told him that when he woke up last time, he had goop in his eyes and it was hard to see. He really didn't like that and wanted to know if they were going to do that again. The doctor explained that usually they tape the eyes shut, but where they were operating was close to the eyes and the tape would be in the way. He explained that when you are asleep during surgery, your eyes don't blink and they dry out. The "goop" is to keep the eyes moist. And for the first time in all of this, I saw Hank's eyes fill with tears. He struggled to gain control, blinking the tears back and willing them to stay in his eyes...but when the doctor said, "yes, I will probably have to use that goop again," the tears started to escape from his eyes. Hank quickly wiped the tears before anyone could see them and again I watched him struggle to stop his emotions. And he did it! I knew that was hard for him...he HATED that goopy stuff. It was greasy, and it made his vision bleary, making him think there was something wrong with his eyes...that is scary! But he accepted that it was the only way, and let it go...

I then learned that our anesthesiologist, Dr. Gingrich, had surgery when he was two. From that moment on, he knew he would be a doctor. And a few subsequent surgeries when he was older. Because of his experience, he believes in treating each child differently, assessing their comfort level and level of understanding, before he talks with them. I loved his approach!

Dr. Siebert soon arrived and I'm not sure, but I think I heard a fanfare of trumpets upon his arrival...or maybe I just imagined it... He came right over, big smile on his face and said hello. He made a few notes, signed Hank's left temple and took a long look at Hank's face. "OK," he said, "I'll see you soon!" And he went off to make notes and prepare.

And with that, they got Hank up, and we walked down the hall to the operating room. Dr. Gingrich was with us and Hank looked around as the doctor sat down and started showing Hank all the machines. He got Hank up on the table and asked him if he would like to fall asleep sitting up or lying down. Hank said he would lay down, and the doctor explained the process, and how all the machines worked. I could see that the surgical nurse was getting impatient as her eyes rolled back in her head, but I greatly appreciated all the time he was taking with Hank to make sure he was comfortable and ready. Hank finally laid down and held the mask as the doctor started a low stream of anesthesia. Hank's eyes started to grow heavy as the doctor talked to him and stroked his brow. I leaned over and gave Hank a kiss and told him all would be well. And just like that, he was out.

The nurse shuttled me out when Hank started to react to going under. He started to flail around a bit and I tried to tell her that I had seen this before and I expected it, but she got me out of there quick! Tears welled up in my eyes...Hank looked so small on that table. I knew what to expect...we've done this before...but something about seeing that little skinny kid on an operating table just really chokes me up. As we went out the door, we almost ran into Dr. Siebert. He took one look at me and gave me a big bear hug saying, "He's going to be fine. We will take great care of him!" I told him I knew that...and thank you. He told the nurse to have me go to the recovery waiting room on the operating rooms floor, so I would be there when Hank came into recovery and Dr. Siebert could find me.

The nurse led me through the recovery area, to a small waiting room with a TV. I told her that I needed to go downstairs and get Jeff and the kids. She said OK, and walked me to the elevator, so I would know the way next time. I went downstairs and found Jeff, Charlie and Lucy in the lobby. I filled Jeff in and he said he would take the kids to Central Park to burn off some energy. One of us had to stay, so I grabbed a cup of coffee and headed back upstairs. But first I text messaged almost everyone in my cell phone to tell them that Hank had gone into surgery. It was 10:30 am...a half hour behind schedule. They had told me three hours, so I figured on 1:30pm.

I spent the next few hours texting with concerned friends and family members, trying to keep everyone involved. Jerri Wood, Hank's teacher, texted me and asked if she could have the kids in chapel pray. I said of course, and I was so pleased to know that while Hank was in surgery, all of the third, fourth and fifth grade students were praying for him, along with their teachers. I got out my Rosary, and prayed myself.

Shortly thereafter, and a half hour early...Dr. Siebert came bounding into the room with a broad grin, saying, "Hi! Want to see him? Come on!" I jumped up told him I needed to put my "worry beads" away. "Were you worried?" he asked. "No, I just like to pray," I replied. And in truth I wasn't worried...have never been while Hank is in surgery. I know he is in great hands! But I am praying for a miracle...and when you know that at least 500 people are praying for your pray too!!

We walked into the recovery room, and there was the Dr. Gingrich and Hank, who was sleeping peacefully. Dr. Siebert told me everything went great. That he injected steroids into the scar on Hank's back to try and lessen how raised it is. That he took fat from Hank and inserted into his upper lip, he did a lower eyelid raise and moved tissue around the middle of his face, giving him a mid-face lift. He also pointed out that there was plastic wrap on Hank's face, to act as compression. "How long does that have to stay on?" I asked, "Until we take out the stitches next week," was the reply. I know Hank...that plastic wrap is going to drive him crazy!! Poor kid!

Both doctors told me they were very pleased with the surgery. Hank looked so good... I looked at him, picturing what he will look like when he is healed. Dr. Gingrich suggested we just let Hank wake up on his own, so I sat down on the chair and started text messaging everyone. I wrote to Jeff and let him know that Hank was out of surgery. Jeff said he was making his way back with the kids and would see us soon. Hank slept for another half hour or so, and then all of a sudden opened his eyes. He looked dazed and somewhat confused. He blinked and looked at me. I realized it before he did, but there was no goop in his eyes!
Hank was upset. He wanted to go home. Waking up from surgery is no fun, and this is where Hank has a hard time. He said his face hurt really bad and I asked the nurse for pain medicine. She said none was prescribed but she would work on it. Meanwhile, Hank started to come out of the grogginess, and he wasn't quite as upset. The nurse came over with the meds, only to have Hank say, "I am fine. Never mind, I don't need it!" I think that the plastic wrap is what made him think his face felt weird and he wasn't used to it.

By the time Jeff and the kids showed up, Hank was sitting up in bed and had a crazy-looking ice pack tied around his head to reduce swelling. Lucy and Charlie stared at him, wondering what that thing was! A nurse came up and said they couldn't be up there, and we said "OK, we just wanted them to see each other really quick, since Hank was asking for them." The next thing we know, the nurse is pulling the curtain all the way around us and says, "It's OK..they can stay." We were so grateful. The kids needed to be a part of what was going on.

Dr. Gingrich stopped by to see Hank. "Did your eyes feel better this time?" he asked. He explained that he flushed them out after surgery. He seemed so pleased that he had thought of that. And Hank was grateful that he had! Dr. Gingrich had a surprise for Hank. Since Hank was so interested in everything, and loves science...the doctor bagged up the tubing from the respirator, the mask and the heart monitor patches for Hank to take home.

But being four and five, Lucy and Charlie got bored and it was time to get them out of there. Jeff went back to the lobby and I accompanied Hank down to the final room before discharge. They let the whole family back in and the nurse brought Lucy and Charlie a soda along with Hank's drink. Finally, Hank got a chance to eat something. Poor skinny kid went 19 hours without food and almost that long without drinking anything.

After another 45 minutes, Hank was discharged from the hospital! Jeff helped Hank get dressed, as Lucy, Charlie and I waited in the lobby. It was so surreal to see Hank come walking out in street clothes, with his jacket on, ready to go. And it was so exciting!

We headed out to the street and tried to find a cab. We ended up having to walk one block down and two blocks over to get on a major thoroughfare. I walked arm-in-arm with Hank as he shuffled down the street. "No death marches, Mom" he remarked. Guess he remembers the last trip.... We finally hailed a cab that we could all fit in and climbed in. Hank and Charlie immediately fell asleep, and Lucy was close.

As we drove back to the apartment, I marveled at how different this experience was. No drains in his overnight stay at the hospital...truly different. But at the same time, I started to feel the apprehension of taking care of someone who has just had surgery!

We got back to the apartment and woke the kids up. Hank immediately took of his coat, sat on the floor and started looking at all the respirator tubing that Dr. Gingrich had given him. We finally got everyone to lie down by putting on a movie. Hank said he was hungry and wanted pizza. And that is what we had! Less than seven hours after surgery, that kid was scarfing down pizza and drinking root beer! Amazing!

We have been watching Hank closely and we have been icing his face regularly. But I see the black eye appearing around his left eye and the bruising on his cheek. But I also see a beautiful upper lip, where there was none. And I see two eyes that are now even. And a sculpted and defined jawline. I see the face that was whole, before Parry Romberg Syndrome started to take all that away.... But more than all that...I see a boy who is growing up before my eyes. Who exhibits more maturity than many adults. Who inspires people to bravery. Who shows great compassion to others.

I see a boy who inspires me to be a better person. To act when I am compelled to do something. Hank remains stoic and brave. Courageous and strong. Don't get me wrong...he is still the same kid...the kid who was crying a little while ago because his eye is swelling and hurts and the plastic wrap on his face itches... But any of us would feel the same way. Hank has shown me the big picture. He has shown me what is important in life. I am honored to be Hank's mother. And I thank God everyday for giving me this love and to learn from.

Tuesday, December 1, 2009

Back to New York We Go...

Can't believe we are here! Back in New York City, and again, it is the night before Hank's surgery. And although we are here for the same reasons, so much is different this time. We've made it through the "big" surgery, and are back for the revision. And this time we are here as a family!
The flights from California to New York were pretty uneventful. We were fortunate enough to have kind ticket agents who worked hard to make sure we were all sitting together. Jeff sat with Charlie and Hank, who happily played their Nintendo DS games, and I sat with Lucy, who required quite a bit more attention...and all went pretty smooth...until Lucy dumped a cup of Sprite on my lap...leaving me soaking wet and not wanting to stand up for any reason! Luckily, that happened two hours into the flight, so by the time we landed at JFK, I was dry

At JFK, there was a serious lack of taxis to take us to Manhatten, but it gave the kids a chance to jump around a bit after traveling for 12 hours. We were all so excited to get in the taxi and thaw out and to share the sights with the little ones who would be seeeing it for the first time. And as Jeff and I pointed things out, we noticed that it started to get very quite in the backseat... All three kids had passed out and were sound asleep! Oh sure, they couldn't do that on the plane...

We arrived at the apartment and sat in the lobby as the security guards tried to figure out why they didn't know anything about our arrival. The apartment building is right across the street from the hospital and mostly doctors, nurses and med students live here. But Forward Face keeps an apartment for people like us...and for some reason this was all news to the security personnel. So there we sat...two adults, three children...all in overcoats, hats, and various other winter accessories...with four suitcases, 4 backpacks and one overnight bag. We looked like immigrants passing through Ellis Island! And then the best part...Lucy dancing around saying,"I need to poop!" Ah...good times!

I finally asked the guard where he lived and if he could cook? Because we had to stay somewhere... everyone was so nice and just doing their jobs, but we were so relieved when they cleared everything and escorted us to the apartment!!

We went out to Times Square and had a late dinner. What a great way to introduce Charlie and Lucy to New York City....Times Square..with it's bright lights and hustle and bustle. They were thrilled and Hank was so excited to show them the sights! But it was cold, and we were tired, so we didn't stay long.

We got back to the apartment and pulled out the beds in preparation of sleep. Hank has the day bed and the little ones are sharing the trundle. Jeff and I have the pull-out couch...and when everything is open, you can no longer walk across the room, but rather you crawl across beds to get to the other side. Right now, everyone is in bed sleeping. And I can see that Charlie's foot is on Jeff's...and they are in different beds! Luckily we are a tight-knit group and all really like each other! We'll see if Hank feels that way after surgery....

After a much needed night's sleep, the whole family woke up after 12:00 pm today! Of course we are still on California time... So didn't get to do much, but did have a nutrious brunch of "Dunkin' Donuts" and coffee! We finished up and headed for Dr. Siebert's office for Hank's pre-surgery consultation.
Going to see Dr. Siebert is like going to visit and old and dear, favorite friend. Our whole family was excited! Lucy and Charlie were finally going to put a face to the name and meet this mysterious person who the rest of us speak of so fondly. We walked in the door and Dee at the front desk, and Nilsa, who Dr. Siebert calls "The Boss", both greeted us warmly, with big smiles. The first thing they said was, "Hank! Look how tall you are!" And Hank smiled broadly as he intoduced his younger brother and sister.

After hanging up our coats...yes, there is a nice coat closet where you can actually hang up your coat...we were shown into an examining room to wait for Dr. Siebert. We didn't wait long...he came bursting in, smile on his face, twinkle in his eye, and a hand out for shaking. He is just the greatest guy! He was genuinely happy to see Hank and gave Lucy and Charlie high-fives, telling them that he has seen their pictures and heard so much about them that he feels like he already knows them.

Dr. Siebert sat down and took a look at Hank. He told Hank that he looked good and was pleased by his progress. He then told us what he was going to do in tomorrow's surgery. He mentioned a mid-face lift, lower eyelid lift, and putting some fat in his upper lip. He noticed a suture scar above Hank's eye where he had an eye-lift last time and said he would take care of that. As he scrutinized Hank's face, he reminded me of an artist, reviewing his work and looking how he can improve it. We showed him Hank's scar on his back where the tissue was harvested last time...the scar is really thick and raised, so they will be injecting some steroids into it to bring it down.

We talked about the surgery time and place and then just about Parry Romberg Syndrome itself and how more and more people seem to be coming forward with it. We wondered if there are a lot of people out there who are misdiagnosed and just finding out what they have. Or that for some people it is just so mild, that it takes them a longer time to seek treatment. But I seem to hear from at least one person every two weeks who is just now reaching out for help. It's exciting to know that this blog is reaching the people we intended it for! And Dr. Siebert keeps up with it and also refers his Romberg's patients to it. Hank is happy that what he is going through is helping others.

We took leave of Dr. Siebert's office, with him telling me, "see you in the morning, get a good night's sleep." "You too!" I told him as we walked out. We left the building and headed around the corner to Central Park. Hank knew how to get there and led the way. We were too late to go into the zoo, but the man at the gate of the children's zoo let us go in, even though we didn't have tickets. The kids thought it was great and loved seeing the amimals.

Afterwards, Hank and his siblings climbed on the giant outcroppings of rocks and "rescued" each other from falling off the "treacherous mountains". They were able to run and laugh, get dirty and just have some good kid time!

We hit FAO Schwarz on the way out and bought each child an "Ugly Doll". Hank got one the day before surgery last time and he took it to the hospital with him. So now he has a new one to go with him, and Lucy and Charlie have new friends as well. While at the toy store, we split up and Jeff and the boys looked at boy toys and Lucy and I got to look at all things pink and girly. I loved it! Dolls and ballerina dresses and cute cuddly stuffed animals. Made me almost forget why we are here!

We finally pried the kids out of the store and went in search of dinner. The Upper East Side is not really conducive to children's restaurants, but we stumbled across a place called "Burger Heaven" and decided to try it. Kid-friendly and delicious. The kids had a good time and Hank had a big meal. (which is important since he couldn't eat for the rest of the night!)

So after a big day of fun...we headed back to the apartment to prepare for Hank's day of surgery tomorrow. The surgery is scheduled for 10:00 am eastern time. We are having the surgery in a surgery center instead of the big NYU hospital. And seeing as how this is flu season, I think we are grateful...

Hank has been in good spirits and is looking forward to getting through the surgery and recovery process. He spoke on the phone to Kyle tonight. (Kyle is the 20 year old in Connecticut, who had the same surgery as Hank when he was little) I overheard Hank tell Kyle, "I'm nervous about the surgery, but I am mostly just excited." And there it is. Again, Hank never ceases to amaze me! He can teach us so much. But I feel the same way...a little nervous, but mostly excited that this surgery can give him his face back...close to the way it was...and more importantly, gives him the chance to have a normal life.

Jeff and I have so much confidence in Hank's surgeon, Dr. Siebert. He is an amazing surgeon and a great man. I know Hank is in good hands, and although it is not easy, and we don't want our little one to go through all this...we know it is the right thing to do...the only thing to do...