One Week and Counting...

I can't believe we have been on this journey for five and a half years... Just when I think we have it handled...things change. We are one week away from heading to Madison, Wisconsin, where Hank will have his 5th surgery. My heart breaks for this kid...having to face another operation, another hospital stay...another recovery...and just all the fear and worry that goes with it. Hank is stoic...he doesn't mention it...and neither do I. But we know it is there...looming ahead...and neither one of us is happy about it.



First day of school...Last day of school...grow much?

We waited 6 weeks to hear back from UCSF, for the referrals to the other doctors they wanted Hank to see. By the time they finally called us, we were planning the trip to Madison. After waiting so long, all they did was refer us to 2 different departments...cranial and plastics. Well I could have done that myself! "Is there a particular doctor we should see?" I asked. "No..." said the receptionist, "just call the numbers I gave you and they will set you up with some appointments." Hmm...so our child has a disease that affects less than 2,000 people worldwide, and you want us to see just anyone? That didn't even make sense to me...

Luckily, I had received a call from Hank's surgeon, Dr. Siebert, the week before. "Hank doesn't need that bone surgery," was the first thing I heard, "He is too young, and even then, I don't know if he will ever need it." I could feel the weight of the world start to lift off my shoulders. "But what about the other people who have needed bone surgery?" I asked, "Isn't Hank going to need it too? I know his cheek bone has deteriorated." Dr. Siebert explained, "Hank was better off than most, when he came to me, we caught it earlier...Yes, his bone has deteriorated, we know that...fixing the tissue is to mask it...but I don't know if he will ever need bone surgery...and certainly not now." I couldn't believe my ears! Just what I wanted to hear..."Bring him to Wisconsin," he said, "We need to lift the flap and remove some tissue, it's weighing down his eyelid." I took a deep breath, "Hank does not want another surgery and Jeff and I don't want to put him through anything unless it is absolutely necessary."

There was a pause...and then I heard the words that squeezed my heart..."Hank is going to be 13. These are the years that matter. The years that form who we are. Hank deserves to feel confident...to look his best. Hank deserves that chance. We owe it to him...I owe it to him... I owe it to this kid to give him the best chance I can. We need to do this for Hank." My heart sank. I knew he was right... He then went on to talk about Hank's eye and all the things that could go wrong if we don't do the surgery and the tissue continues to pull his eyelid down...won't be able to close his eye, resulting in eye ulcers, dryness, and many other issues. And so that was that. Surgery on June 19th...now how were we going to tell Hank?

The next week was crazy busy, with me working long hours and putting on three events that week. I only saw Hank for an hour before school and knew that I couldn't tell him then. And so we waited all week to tell him. It was painful...and worrisome...how would he react? We finally found our chance that weekend...I had to work on Saturday, so Sunday after Mass would have to be the time. As Jeff and I made our way up the stairs to Hank's room, my heart was heavy. I rehearsed in my head what I would say. Hank was sitting on his bed, playing a game on his laptop. He looked up when we came in and I saw the questions on his face. Must be serious...both mom and dad in his room...and wanting to talk!

Jeff sat down next to Hank and I sat on Charlie's bed across the room. We started off by telling him that he would not be having bone surgery. "Oh thank God!" he exclaimed as he looked up at the ceiling in relief. "but..."said Jeff, "you do need the tissue surgery in Wisconsin." Hank's face fell..."NO! NO NO NO!" He said in a voice laced with anger and disappointment. "We are so sorry," I said, "but we have to do this...you need it.", and went on to explain why. Hank sat silently and listened...and then the tears started to roll down his cheeks. He tried to wipe them away before we saw them, but they were too quick and there were too many. "No..." he said quietly. I felt terrible. This was awful. It was so much easier when he was little. He didn't quite understand and he didn't seem to remember the surgeries. But now...now he gets it...and he remembers...and I don't blame him...I wouldn't want it either.

I watched his face and could see the range of emotions...anger, disappointment, sorrow...and then resignation... "OK. Fine. I'll do it," as he wiped the tears away and sat up. And that was that. I knew he was angry and hurt...but he did not want to talk about it... he wanted to be alone. We left the room and went downstairs...and then it was my turn to cry...

I sent Dr. Siebert a text..."We just told Hank about his surgery. He is very upset. Would you be willing to talk to him about it?" The response came back right away..."Absolutely!" He called that night. "Hi Terri, It's Dr. Siebert. Is Hank available?" (I love this man) I handed Hank the phone, "Oh Hi Dr. Siebert!" Hank exclaimed when he heard the voice on the other line. They talked for a few minutes, and I heard Hank say, "OK. See you in a few weeks." Whew...he sounded OK. Hank handed the phone back to me..."I told Hank not to be mad at mom and dad," Dr. Siebert said happily, "I told him to be mad at me...it's not mom and dad's fault, but you need to have this done. He'll be fine now." Once again Dr. Siebert leaves me speechless..."See you in a few weeks!" he said, and we hung up.



Last day of 7th grade

It's been two weeks now...Hank seems OK. Summer has started, with the last day of school just a few days ago. Hank received two awards and sailed through the year with good grades. He is happy to have this week at home to just relax. Unfortunately, we will be celebrating his 13th birthday at the Ronald McDonald House, and therefore he has told me, that I we will be having his party this weekend. (What's one more thing to do before we leave?) I am trying to get him to have a slumber party...outside in our tent, but he is indignant..."You want us to sleep outside?" He clearly doesn't get the whole "camping vibe" that we are trying to create...

Today is the day of our fundraiser. "Pizza With a Purpose". It's our first one since moving back to our hometown. Wish I had time to really plan one and advertise. We put this together in a day...but with our kids' amazing school, and the radio station running a PSA about it, it should go well!

Little miracles have been happening this whole last week. A letter came from the State Controller's Office that said a local bank had lost funds of mine. I went to the bank and found that it was just enough to cover the plane fare to get us to Chicago and back...the radio station recording a PSA for Hank's fundraiser...unsolicited all about 12 year old Hank Gibbs and his fight against Parry Romberg Syndrome!...and last night...last night put me over the edge of stunned gratitude...

Hank is not the only one having surgery next week...13 year old Kristina, from Atlanta will also undergo surgery for her PRS. Mom Karen and I have become close friends over the years...and saw an opportunity to meet in real life and for the kids to have someone to go through the surgeries with. I had put out note on Facebook, asking if anyone had an "in" with the Chicago Cubs...we will be flying out of Chicago and would love to take the kids to a game...but tickets are pricey and our money needs to go towards the necessities...



Our surprise visit with the McQuillen Family in NYC 2009

Last night I got a message from another PRS mom, Flora McQuillen, "How many tickets do you need?" she asked...I responded with a cringe..."nine. 5 for our family and 4 for Kristina's family". (nine is a lot to hope for...) I told her if we had one family covered, we could split the cost of the other tickets... The next thing I know...she sends me an email with a confirmation attached...she and her family have purchased our tickets...all of them...NINE! I couldn't believe it...Here is another family who have walked this walk that we are on. We met them in New York after Hank's first surgery. Their son Pat, was 13 at the time and had already had his first surgery. I will never forget how excited we all were, to meet in person! Pat was the first person with PRS that Hank had ever met and I was so grateful to get the chance to meet them. It was a short visit...just coffee before they caught the train home...but it is a memory that I will treasure forever. I can't thank Flora enough for her generosity. I was in tears as I let Jeff know...and still in tears when I told Karen. And then she was in tears too...
I have no idea what today will bring...The fundraiser starts at 11:00 and goes all day. I will be running back and forth from work, so that we can be there at lunch and again at dinner. I have high hopes that Hank will have some friends there...we will raise some money for Hank...and raise awareness for this disease does not define who we are...but has definitely changed our priorities and opened us up to things we never imagined...good and bad. Today is all about Hank...strong and stoic Hank...facing surgery #5 with grace and courage...


* Note: I started this blog years ago, to keep our family and friends informed on Hank's illness and progress. This is a disease full of unknowns...unknown cause, unknown progression and it affects each person differently. Although we wish Hank did not have to have surgeries, the alternative is much worse and we are extremely grateful we have Dr. John Siebert in our corner. I can't imagine what Hank's life would be like if we never had the micro-vascular free flap tissue transfer. These surgeries give Hank the normal life we have prayed for and we would not change a thing!

Game Changer

Hank is almost 13...in just 2 months, he will be a teenager...and he already looks like one! Hank has grown at least 5 inches in the last year...going from little boy to young man overnight! And nothing reminds me more of this, than the fact that Hank is starting to want to know and have some say about his medical care.



L: Easter 2013, R: Easter 2014

After Hank's last surgery in October 2012, Jeff and I told Hank that "this is it...no more surgeries unless medically necessary or if you ask for it." Here we are a year and a half later and faced with the knowledge that more surgeries are in his future. Hank is scheduled for surgery this June in Madison, with Dr. Siebert. I have known for a few months, but didn't want to tell Hank until he got through all his big projects at school. But this week, push came to shove and I had to tell him.

Waiting Room with a view!

We are up in San Francisco right now...after having gone to UCSF for an appointment with an ocular plastic surgeon. Hank's eye looks like it is falling...so Dr. Siebert referred us to a doctor in SF for a consult. I don't know what I expected...but what I got...was NOT what I expected! In all honestly, I was supposed to bring Hank here a year ago! But after just having a surgery, I couldn't bear to take him to yet another doctor...so I dragged my feet until I HAD to go...but I wanted to make sure before heading to Madison for surgery, that we had all the info.



Always a smile on his face!

The good news is that Hank's eyesight is pretty normal (although, he could benefit from glasses...which makes glasses-wearing-little-brother-Charlie, quite happy!)..and Hank's left eye is just a millimeter lower than his right eye...which is just where most people are. So what we are seeing is not Hank's eye "dropping" but his lower eyelid being pulled down. What is less than happy...is the theory is that his bones have been affected...and after the doctor had me place my hands on Hank's cheekbones, I know he is right. The right cheekbone is where it should be...the left is flat...the bone has deteriorated.

After examining Hank, the doctor told us, "I don't think he has Parry Romberg Syndrome." WHAT? How is that statement even possible? I pointed out that two doctors at UCSF diagnosed him with PRS over 5 years ago, as did our pediatrician and Hank's surgeon! He pointed out that Hank does not have "en coup de saber" which is the indentation of the forehead. I told him not everyone manifests that way...and then he said that PRS only affects soft tissue and not bone, and yet clearly...Hank's bone has been affected. Again, I explained that Hank had a micro-vascular free flap tissue transfer 5 years ago and then 3 revisions, so of COURSE his tissue would look good! At that point, the doctor, turned and looked at me, "You have obviously done research, and probably know more about this disease than I do..." (which reversed the opinion of him that I was quickly forming..) 

So here's the bottom line....This doctor thinks Hank needs bone surgery....either a bone graft or a surgery to move the bones forward. He wants Hank to come back and see the cranial team....the facial plastic surgeons, to have an MRI or CAT scan, depending on what those doctors think, and then to come back and see him in 2 months. But in less than two months, we are supposed to be in Madison, Wisconsin, where Hank will be undergoing surgery to raise the tissue up around his eye and debulk his cheek. ARGH!!!

"Hank is scheduled for surgery in two months!" I exclaimed, "What do we do? Go forward or wait? I don't want to put Hank through another surgery that won't work!" The doctor said that the tissue lifting is just to mask what is really happening and would turn out much better with the bone addressed first. Now here is where my heart breaks...I KNOW what this surgery is...I have been afraid of this surgery for years, and have been PRAYING that Hank would avoid it. But the fact is, our friend, Kyle, in Connecticut had to undergo this surgery when he was 17. His family flew out to UCLA for it, and I remember his mother Patty, telling me how terrible it was. Hank was just 8 at the time...and that seemed so foreign to me...but in the back of my mind, I have never forgotten her words..."Worst surgery he had ever been through...and the recovery was horrible"... I remember the photos of the aftermath, and her telling me how angry and miserable he was....

Hank is happy....he thinks the bone surgery will be better than the tissue surgery, "I am OK with it as long as I don't swell like I do after the other surgeries..." Ahh....ignorance is bliss!

We left that appointment with Hank in good spirits and Jeff glad to have more info...but my stomach is in my feet and I feel lost. We had a plan...I liked our plan...with a doctor we know and trust. A doctor who understands the pathology of the disease. I know this new doctor is knowledgeable about his field...but this feels like it's a bit foreign to him...and I don't like it.

After a beautiful dinner at our favorite San Francisco restaurant, Scoma's...and a much needed drink or two...I once again have put this in God's hands. I can't worry about it...I know the path will unfold and we will follow it, just like we have in the past. (OK, who am I kidding....I will still worry about this 24/7)

I sat down this morning to send a note to Dr. Siebert, and to ask him to call this doctor. Halfway through the email, my cell phone rang and on the other end was the tirelessly upbeat voice of our favorite doctor, Dr. Siebert!! What a relief! We had a long conversation...he reminded me that we have known about the bone...and that we have been just doing the best we can with the tissue...(I think I have been in denial about that). He is going to call this doctor, mull it over and call me on Monday to come up with our game plan. I love that he asked what Hank thinks...which I replied, "That he never wants another surgery!" and he asked if Hank's eye hurts, or is red... I believe he is trying to determine severity of his eye...

So now we wait...to hear from Dr. Siebert...whether we go forward here at UCSF or south to UCLA, I think we have a couple of months of doctor appointments and tests. I don't know if we will end up in Madison or not...which is a killer, since we had planned to meet our friends from Atlanta in Madison, where Hank and Kristina would undergo their surgeries on the same day...giving two kids with PRS a chance to hang out...and two moms and dads a chance to connect in REAL life with people who understand EXACTLY how they feel!

Please keep Hank in your prayers...I continue to pray for a miracle and hope for a cure! In the meantime, we are heading out to have some fun in San Francisco and join some friends for tonight's Giant's game! Life continue's on...and we will continue to meet each hurdle head on...together...!

The Journey to Green Bay and the Miracles Along the Way

Day three post-op and we were ready for a break!  We took Saturday and made it a day of rest. It was cold and cloudy out...the perfect day to stay indoors.  Hank was still feeling shy about his swollen face and not able to open his left eye, and really just wanted to stay put. Lucy and I had caught colds, so we needed a day of rest as well. Hank and brother Charlie played video games while Lucy colored. We watched movies, read books, caught up on laundry and relaxed.

On Sunday, we got up early (early for us, that is...) and went on a road trip. We couldn't let this trip just be about surgery! We find that it's easier, if we do fun things too...then Hank tends to remember the fun stuff and not the surgery itself. So we headed up to Green Bay. It was an unfortunate start of the day, as I got hit with the stomach flu that morning...but we had a plan for the day and nothing was going to stop us from going!

About a year ago, when Dr. Siebert said Hank needed another surgery and we knew it was going to be in Wisconsin instead of New York, my sister Patty sent me an email with a link. In it she wrote: "This is why you will go to Wisconsin." The link was to a site for "Our Lady of Good Help" . It's a place where the Virgin Mary  appeared some hundred years ago and is now a shrine...it's the site of healing and miracles...and since we want Hank cured...well...we want a miracle...we just had to go! It was almost a three hour drive through pastoral Wisconsin. Very serene with dairy farms, orchards, with the leaves changing colors and more. Following the signs to the town of New Franken...and down a long country road dotted with dairy farms, we found the shrine. Made up of just a few brick buildings, it didn't look like much...a church, a gift shop, a small cemetery... We got out of the car and walked around...not sure where to go first...I saw a sign that said, "crypt"... That sounded a little ominous...and then an arrow that read, "shrine."

We headed down the stairs into a dark room, and there in front of us was a lovely scene. A beautiful statue of Mary, Our Lady of Good Help, brightly lit and surrounded by bouquets of flowers, flanked by statues of kneeling angels, stood in the middle of the room. The only other light came from the numerous candles around the room. I was immediately awestruck and in tears as I knelt in the silence of the room, asking for the miracle we so desperately want. Hank went up and knelt in front of the statue, soon joined by Charlie and Lucy...all three with hands clasped and heads bowed in prayer. For me it was that last-hope kind of feeling...the one where you just want to prostrate yourself on the floor and beg...BEG for your child to be healed!

Hank was quiet and serene...just taking it all in. We made our way to the gift shop, to grab a few remembrances. As I paid for our purchase, I was talking with the nice ladies who run the gift shop, telling them that we came all the way from California. They inquired about Hank's surgery and I filled them in. One lady disappeared into the back room and came back carrying two items. "These are relics," she told me, "one from St. Theresa the Little Flower and one from St. Maria Goretti." Now this might not be amazing to anyone else...but to me, it was astonishing for two reasons...one is that St. Theresa is my patron saint...and to come by a relic of hers is quite unusual...but two...our church was started a few years ago and just this August, we completed and moved in to our new church...called...St. Maria Goretti's! So for me...this seemed so significant! The woman explained that the relics had belonged to a woman who passed away and her family left the relics with the shrine. I had Hank hold the relics and he blessed himself with them. (extra prayers!)

As we left the shrine, we saw a dog sitting in the parking lot. "Here boy!" Hank called as soon as he saw it. The dog turned and saw Hank...stood up...wagged it's tail and made a beeline for Hank. We have a border collie at home named Maverick...and the kids are really missing him. As the dog came closer, I realized that this too was a border collie! The dog came right up to Hank, rolled over onto his back and waited for Hank to rub his belly! All three kids converged on the dog, petting him and scratching his belly. When he had enough, the dog rolled over and only had eyes for Hank. All he wanted to do was reach Hank's face and smother him with dog kisses. Hank's face lit up with such sheer happiness...an amazing sight!

We finally gathered up the kids and headed for our next stop...Green Bay...home of the Green Bay Packers! You can't go to Wisconsin and NOT go to Lambeau Field! It's the Holy Grail of Football! I expected a big city like San Francisco or something...but it's not...no skyscrapers...and the stadium is truly in a neighborhood! The parking lot looked deserted...the Pack had an away game that day...but we went ahead and climbed the steps to the stadium anyway.  From a religious shrine to a sports shrine...that's how we felt. So excited to be there! Lucy and I fell behind as we hit the ladies room...Jeff and the boys were at the info desk, talking to the woman at the counter. The next thing I knew we were following her from the atrium to the actual stadium! Apparently, she told Jeff it was closed...but then taking a look at Hank's sad sutured face and hearing we were from California...she called security and got clearance to take us out. (A football miracle? I think so!) It was AWESOME! Jeff looked the happiest of all as he said, "Take a picture of me!" with arms outstretched and Lambeau Field in the background.

We thanked our tour guide profusely, sad that we missed the real tour where they take you through the tunnel...but so excited that we actually made it there and got to see the stadium. As we drove the three hours back to Madison...I took a turn for the worse. I had made it through the day and now the stomach flu was taking over. But I was so grateful for the day of mini miracles...smiles on everyone's faces...Hank getting some solitude in prayer and the excitement that only a great sports' institution can bring! We still had to face getting stitches out the next day ...and Hank was still swollen and not feeling very well...but for one day, it was nice to get out and enjoy the Wisconsin countryside!

The next morning, Hank exclaimed, "Mom! I can open my eye!" Finally! After five days...he could open his eye. What a relief! "I prayed that I would be able to open my eye and see," he told me, "at breakfast I thanked Our Lady for answering my prayer." I can't help but think all our prayers were answered...there are no coincidences...and all the little things that happened at the shrine tell me that our prayers were being heard. Maybe they aren't answered right away...but they are answered!

Since I am talking about shrines and statues..etc. I do want to add something...We do not worship statues and we do not pray to anyone other than God. A statue is just like a photo of someone...a remembrance ...and if I ask you to pray for Hank...why wouldn't I ask those who are already in heaven to do the same? Jesus loved his mother and would do anything for her...so when I ask Mary to cure Hank...I am asking her to intercede on our behalf, to her Son...that is all. Our journey over the last few years with Hank and his PRS has had the highest of highs and lowest of lows...but through it all we know that God has shown us the path...

2 Days Post-Op

Everyone has a blanket and we are cozied up together on the big sectional in the family room, watching Looney Tunes. Such a fun and "normal" thing to do...the perfect scene you would expect for a Friday Family Night at home! But wait...we aren't at home...we are still in Madison, Wisconsin...thank goodness we are here, at the Ronald McDonald House! Really gives us a chance for some kind of normalcy when things aren't normal at all! Tonight, I saw the first hint of a smile on Hank's face, as he sat next to his Dad, watching Bugs Bunny. Of course he can't give a full smile since half of his face can't move yet...and he is still terribly swollen and unhappy...but right now...he is just being a kid and hopefully getting a little respite from the trauma of the last few days.

This morning, we took the short commute to the "Transformations" clinic in nearby Middleton. We met with Dr. Siebert's P.A. (physician's assistant) Luann, for the removal of the hated sutures on Hank's eye. We have all been dying for him to get them removed...they make it so hard to put drops in the eye...and with the swelling, they were pressing into Hank's upper eyelid. Not comfortable at all!  Luann is so nice...and with three kids of her own...I think she had some insight into how Hank's been feeling. Since there was tape on Hank's forehead, she applied a solution to loosen it...while we were waiting I asked for a favor.. "I was just wondering if you could help Lucy while we are here?" I asked.  "What do you need?" she replied. "Well...Lucy had her ears pierced 6 weeks ago...and she would really like to wear different earrings now...but she won't let me remove them. Since you are a professional..."  Luann smiled and asked Hank and Lucy to switch spots. Very carefully Luann removed the earrings and replaced them with the new ones. Quick and easy! Which is great because when I tried to do it last week, there was a lot of screaming and crying! 

Hank's turn was next and Luann made quick work of the removal of the tape and then the sutures. She was done before Hank had time to complain...and when she told him she was done, I saw the hint of a smile appear! I'll admit that it was a smile of relief and not happiness...but we will take what we can get! With our next appointment set for Monday, and Luann's lunch suggestion of  "Quaker Steak & Lube", we headed out. Hank did not want to go anywhere. "Let's go back to the Ronald McDonald House," he said. "Aw...c'mon Hank...let's go get some lunch!" said his Dad. "No...I just want to go back!" Hank was upset by the mere prospect of being out in public. But after telling him how they are used to seeing people who have had facial surgery in that area and he could wear his hood...he finally relented.

Hank kept his head ducked and his hood on as we entered the restaurant. He burrowed his head into my side and I threw my arm around his shoulders and tucked him in close to block him from the other patrons. When we got to the table, I notice he chose the seat against the wall, so that anyone walking would by would just see his "good" side. Clearly, he thought this out. I could tell he was uncomfortable at first...not wanting to look at the waiter. But as we ate lunch, Jeff told the kids stories of his daredevil youth and had them all cracking up. I could see Hank's guard was down and he forgot where he was for a few moments and giggled and guffawed with the rest of us. As it turns out, it was short-lived...the moment we stood to leave, the hood was up and he retreated back into his cave. He didn't want to play pinball or any of the video games...he just wanted to GO! (for him to pass up a video game...unheard of)  I see that this will take some time.

Back at the Ronald McDonald House, we cleaned Hank's eye up and he headed down to check out some video games with Charlie. Jeff affixed an ice pack to his cheek, so he could play and ice at the same time...and he seemed at ease...comfortable in this cocoon of healing that the RMH provides!
I left to do a little shopping...it's COLD here and guess who is wearing flip flops and forgot her jacket? Yep...I made sure everyone else was packed up and then forgot some essentials for myself. I mean, really....who forgets a coat when they are going to Wisconsin in the fall? Uh...that would be me!

I fired up the rental minivan and headed over to Costco in nearby Middleton. (yep...driving a minivan and can't believe I love it!)  So I finally ended up at Target...which has it's own parking garage and escalators to get to the front of the store. I love Target...so I was in heaven! While I was shopping, Jeff and Lucy were watching the baseball game and the boys continued with video games. At dinnertime, they made their way to the dining area and Hank actually sat at the table and ate dinner. Maybe realizing everyone is here because of a medical issue? I don't know...just glad he was a little more comfortable.

Armed with winter hats and gloves for our group, and a jacket for each kid and myself...apparently everyone grew since last winter...I made my way back and ate dinner while everyone else played. Eventually, the kids picked movies, which brings to where I started this whole thing...chilling in the family room of the Ronald McDonald House! I am  putting this to bed and will add the photos in the morning...so exhausted as I am coming down with a cold. Sore throat, runny nose...figures!

It's Saturday morning...it's already noon... and our little band of warriors is falling one by one. Lucy had a hard night ...woke up at 2 am with a sore throat. Jeff medicated her and she ended up sleeping in the bed with me (put the two sickies together?) and Jeff took the roll-away bed...which can't be that comfortable. Hank did a lot of talking in his sleep. At 4 am, Charlie was up, changing his clothes...uh oh...his bed was no longer suitable to sleep in and I told him to get in my bed and I would sleep on the floor. "No mom! I will sleep on the floor! I don't mind!" Charlie whispered. I spread his blanket on the floor as he grabbed his pillow. I put another blanket over him and laid down next to him as we curled up against each other. He is just so sweet! After he fell asleep, I went back to bed, only to find that Lucy had cocooned herself in the blankets and decided to sleep lengthwise across the bed! I skooched in next to her...on the very edge of the bed...oh sure...I could have rearranged her and disentangled the bed clothes...but really....I would rather balance on the edge of the bed with no blankets than risk waking her! (that is how desperate for sleep I was!)

We were woken by what sounded like a car chase outside our window. Sirens of different vehicles...sounded like about 20 of them! No idea what was going on...just knew it woke us up! So here we are....I'm still in my pajamas, laying in bed. Lucy has gone back to sleep...Jeff and Charlie are doing laundry, Hank has enjoyed his first shower since surgery...and now both boys are heading down to the family room to sit and play video games. I think this family needs to recharge it's batteries today...the trauma of everything has caught up with us. Tomorrow, we will bundle up against the cold...but for today, we will circle the wagons around Hank and stay put! Hope we get to see that elusive smile from Hank today...

Before stitches removal...

With Luann after stitches removal!

The elusive smile...!