Tuesday, June 17, 2014

Almost Home

We are on the last leg of this marathon stay! Now that its almost over I can say that it has gone by fairly  quick. Josie and I said a sad good-bye to Dave on Sunday as he left for home. Josie was actually okay with dad heading home, but I was the sad, weepy mess. I've been missing Brooks and Millie terribly and to watch Dave head home to them was bittersweet. I know I would have been just as upset leaving Josie if the roles were reversed, it was just a day I had to get through I guess. Josie helped to pull me out of my slump at dinner that night and we made a pact that we'd make the most of the remainder of our time here.  
5 days after surgery, her eye was trying to peak out 
Monday morning Josie and I woke early and headed back to the hospital to have her suture and drain removed. Josie had nearly 70 sutures that stretched from her inner lower eye lid across her temple and down below her jaw. In order for her doctors to remove that many sutures and have her remain still they needed to sedate her. Unfortunately with Josie when she is sedated multiple times so close together she tends to wake up not so happy. Last Monday after surgery she was a sleeping angel that woke up very gradually, this Monday after the sutures came out the gloves were off and she was ready to fight. She was extremely agitated and unconsolable for about a half hour and then fell back to sleep. . .2 1/2 hours later she came back to me as her happy self. She giggled on the walk back to the house as I told her the story of her trying to kick the nurse. Silly kid:)
8 days after surgery, stitches and drain out
I asked Josie today how she'd like to celebrate being free from her drain and she very quickly responded the zoo, so that's exactly how we spent our time, the Central Park zoo. On our walk home this afternoon Josie spotted a play area in Central Park that she hadn't explored yet so weather permitting that is on the agenda for tomorrow. Where we are staying is about 7-8 blocks from Central Park and 2 blocks from the East river so we have lots of great places to visit within walking distance. We love the gelato from the Sweet Shop that is across the street, the owners are as charming as our own small town store owners. Josie discovered a toy store on our walk to the park that she's now visited twice. We really have enjoyed the new neighborhood we are in; its more residential (quieter), has tons close by, and it feels more like an actual neighborhood than where we were. Its funny to me that in 15 short days Josie has become quite good at knowing when to "jaywalk" at intersections and navigating our neighborhood. I joked with Dave that she'll probably move out here when she's grown, its going to feel like a second home to her.
Central Park Zoo
As you can see from the pictures Josie has continued to heal and change. She still has a lot of swelling & bruising but despite all that we think she looks amazing. It has been the biggest reward to get to watch her study herself in the mirror and to see her excitement in what she sees. Painted on the walls here are a lot of great quotes but one that really resonates with me is from Kim Hill, it reads "At the time I didn't enjoy being sick. But I'm glad I did get sick, because through my suffering, a great thing has come of it." I firmly believe that God has big plans for Josie and that all of her hurt and all of her experiences are helping to mold her into who she is meant to be. Josie mentioned several times leading up to this surgery that she just wishes she was "normal" and my response to her has been "why be "normal" when you can be extraordinary? Normal is boring. Be the amazing person you were meant to be." I pray that she holds onto that. We all need to hold onto that, myself included. I've started to ramble, so for everyone's sake I will stop here and say good-night.
Tonight (9 days after surgery)


Thursday, June 12, 2014

Healing

An hour after surgery                             48 hours after surgery

Our little peanut has been a real trooper since being discharged Tuesday morning. She drifted in and out of sleep all of Tuesday but by Wednesday morning I was able to coax her into walking down to the dining hall for breakfast. She really was not wanting to walk around or be seen outside of our room (she has swelled considerably and is always so self-conscious of her incision and drain). I bargained with her that if she would walk to breakfast I would carry her back. As we stepped onto the elevator there stood another mom and Josie automatically turned to face the back of the elevator as not to be seen. As we stepped off the elevator onto our floor I gently reminded Josie that all of the kids here are trying to get better and that if anyone looks at her it is either out of curiosity or concern (just like she had been with the kids when we first arrived here). Josie nodded like 'yeah mom, whatever' and reluctantly walked with me into the dining room. After she realized she wasn't going to be a spectacle in the dining room she very proudly made the return walk to our room without being carried. She has since marched without hesitation to check our mail, attend kid activities, meals, etc. I really can't say enough good things about the Ronald McDonald House, it has been a great comfort to heal here. I think for the rest of my days I'll hold this place near and dear to my heart.

Thank you to all of you who have sent cards and letters to Josie, checking the mail has quickly become her favorite part of the day. Below is a picture taken this afternoon after Josie checked our mailbox. She proudly declared that she has "never had this many cards before" and grinned from ear-to-ear as she opened them all up. 

Tuesday, June 10, 2014

New Smile


Before Surgery
An hour after Surgery
Josie is resting comfortably in front of a re-run of Full House right now so I'm going to steal a few quiet minutes to update you all with the outcome of her surgery yesterday...

Dr. Waner and Dr. O spoke with us shortly after 7 last night and let us know that Josie's surgery went very well. In Dr. Waner's words she is "perfectly symmetrical" now. He removed a considerable amount of tumor from below her eye all the way down to her lower jaw. They tucked her nose, shaped the bone below her eye, lifted her lip and tightened her lower eye lid as well. Her doctors did make the decision (while in surgery) to wait on the reanimation procedure for a year (reanimation is the process of surgically correcting facial paralysis through nerve grafting and muscle transfers). They want to be sure there is no regrowth of the disease before they begin reanimation. So next steps for us will include getting a baseline MRI and then another next Spring. If the tumor shows no signs of re-growth we will begin reanimation next Summer. They mentioned the possibility of removing the disease that is on her forehead later this summer, but that is still up for discussion. I'm sure we'll talk more at her follow-up appointment next week.

In the meantime, we are very pleased with the outcome from yesterday's surgery and are over-the-moon to see her first balanced smile! The first thing that struck me was how much her smile resembled my dad's beautiful smile, made me melt! I showed Josie pictures of her new face (that I'd taken before her swelling began) and what she saw brought on her first of many smiles today (that is just everything to this mother's heart). Today I teased her that when she looses those two loose front teeth now we'll be able to see that beautiful gummy smile. So much to celebrate, God is so good!!!

Josie had a very peaceful night's recovery, so peaceful that I actually got to sleep from 1-6 a.m. (that never happens). I don't think we've ever had a more smooth or pleasant night after surgery. Josie is actually resting comfortably back in our apartment now, we were discharged just before noon today.

If anyone has questions or would like me to clarify anything please feel free to post questions in the comment section or on Facebook, I'll try my best to answer. I'm off to spend time with Cheryl before she flies homes. Thank you, thank you, thank you to all of you for your words of encouragement, prayers, texts, positive thoughts, etc. It carries us through these surgeries!

Monday, June 9, 2014

Surgery #5


Just a quick update...

Josie went in for surgery a little after 2 p.m. (eastern time). Like all the times before, she was incredibly brave (the medical staff at Lennox Hill are just as wonderful as the staff at Roosevelt). We are so very, very proud of her. We are expecting a 5-6 hour surgery. 

Dave's flight arrived on time this morning & he came directly to the hospital. He was able to play/wrestle with Josie & make her giggle before surgery. He does wonders for our nerves. 


Friday, June 6, 2014

Expectations


This morning we met with Dr. Waner and Dr. O for Josie's pre-op visit at their new clinic. It is just blocks from where we are staying but since we had never been to this clinic before the incredibly sweet social worker (Meredith) at Ronald McDonald House offered to walk with us and show us the way (seriously in love with this place). Our visit with Josie's doctors left me feeling very much at ease and reassured. I shared with them the frustrations I had with our insurance company and that my greatest fear is that one day we'll loose the battle and they'll deny us treatment from them all together. Dr. Waner reassured me with great confidence "that will never happen", I guess he knows the medical director at our insurance company and the director is "familiar with his work". I don't know if it was Dr. Waner's confidence or connections that put me at ease, but whichever, it worked. I'm choosing to have faith. 

What to expect from Josie's surgery . . .  her doctors will do an "extensive removal" of the tumor. In Dr. Waner's words "she will look quite thin" on her left side. She'll have a face-lift incision (an incision from in-front of her ear running down along her jawline (just like in her first surgery)), they'll also tuck her lower eyelid on her left eye so that it no longer droops (the droop was the side-effect of her last surgery) and there was discussion off raising her lip and tucking her nose. In addition to all of this they will also begin the reanimation procedure. For this she will have a nerve harvested from her lower leg; she'll have an incision by her outer ankle and they'll scope to harvest. To integrate the nerve into her face she'll have another facelift incision on her right side. They will connect the harvested nerve to the functioning nerve on her right side and extend it over to her left side. She'll also have another little incision by her nose on the right side. The nerve will then need to "hang-out" for 6 months to a year and become functioning before they will perform the second half of the procedure. It all sounds like so much for such a little girl and I struggle with being brave for her when I'm scared myself, but we have to choose to be brave, have faith, and be very thankful. This is life-changing and we owe it to her.

 On a lighter note, it was perfect weather here today and Josie had a great afternoon showing Grandma Cheryl around Chelsea Market and Chelsea Pier, then exploring Ellis Island and the Statue of Liberty, helping Grandma brave her first NYC subway experience, and last but definitely not least eating gelato in Grand Central Station. It was a pretty great day and everyone seems to be sleeping soundly now with the exception of me. Last night I could hear everything . . . the horns honking, the neighbor yelling loudly in Chinese at midnight, babies crying, dogs barking . . . I'm really, really tired. Fingers crossed tonight goes better.

Thursday, June 5, 2014

Victories


Today felt like a tremendous victory after the past week we've suffered through. For those that do not already know, we found out a week ago Wednesday that Josie's surgery (which we were suppose to leave for today) had not yet been approved by our insurance company & had been initially denied. The entire story behind this is a long one, full of boring, complicated insurance terms and facts that actually may make you want to toss a middle finger up at the insurance company. The short version of this story, which is what I prefer & makes me feel more Christian, is that the decision was appealed and although they didn't approve her surgery until late afternoon Tuesday of this week (yep, less than 48 hours before we were to fly to out), she was approved for surgery! I don't think I've ever felt such intense stress and then such incredible relief. A huge thank you to those family and friends that were praying hard & pulling for us, love you & it worked!!

So our tremendous victory??? We are here in NYC baby! This time around I have a wonderful travel companion joining me for the first leg of this marathon stay, my mother-in-law Cheryl. So far she has served as a good luck charm (we were bumped up to first class on our flight out), she has helped to settle my nerves, and she has been Josie and I's welcome distraction (we have enjoyed showing her some of our favorite spots in the city). The icing on top of this day is the amazing Ronald McDonald House that we are staying in. If you remember from my last post, this is new housing for us and I'm really wondering why?? This place is truly amazing and such a God-send! After one day here, I can honestly say that I think being a social worker here would be my absolute dream job. Everyday you would go to work with such passion for the people you're helping and every night you'd go home completely content. I definitely want to post more on this amazing place, but I'm so weary and exhausted right now that I don't think I can do it justice. So, what's next?? Tomorrow is our pre-op appointment with Dr. Waner and then Monday will be surgery day. As usual, we will have no idea on surgery time until the day before. I'll keep you posted.

One last thing before I drift off, our stay in New York will be a little longer than usual because of the type of surgery she is having. If you would like to send Josie get-well cards or letters of encouragement I know that she'd love to receive mail! Letters should to be post-marked no later than Sat., June 14th in order to reach Josie before we travel home. Our address for the next couple of weeks is:

Ronald McDonald House New York 
Josephine Paugh, RM 510
405 East 73rd St.
New York, NY 10021

"if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you." Matt. 17:20







Monday, April 21, 2014

New Chapter

Kindergarten




















Today finds us in a familiar place, we're gearing-up to head back to New York after having an almost 2-year break from surgeries. When I last posted over a year ago, I was so completely disappointed/deflated/mad that Josie's surgery had been postponed that I couldn't see the light through the tunnel. But now, looking back I can see very clearly that it was a blessing that we didn't know we needed. Our whole family has benefited from the time away from surgeries and have enjoyed just being "normal". With a surgery scheduled for early June, it's been really hard to get back into the swing of things. In fact, Josie was pretty disappointed when I first told her she was going to have another surgery. I had to sell her (and myself) on all the fun things there are to do in the big city. Now she seems content to go. She has always been better at this stuff than me.

Since our last trip in 2012, Dr. Waner has moved his practice to a completely different hospital in Manhattan; so with this trip we'll be learning a new neighborhood, hospital, and housing. It feels a little like starting from scratch, but we've been reassured that with the change in hospitals there are perks; like access to other amazing doctors. When Josie goes in for surgery it has never been just Dr. Waner in the operating room, there has always been a team of specialty doctors contributing. Its very reassuring to know that Dr. Waner can pull a dream team together if he needs to for Josie. We know that she is in the best possible care.


So what to expect for Josie's June surgery. . . Dr. Waner will continue to remove tumor from around her lower jaw and begin the facial reanimation process. Facial reanimation is the process of surgically correcting facial paralysis. In Josie's situation, her facial nerve and muscle stopped working because they were buried in fatty tumor (causing her mouth to droop). During this surgery, Dr. Waner will graft a nerve from Josie's leg and place it in her face. After this procedure we'll come home and let the nerve rest and then go back for a second procedure to graft a muscle from her leg to place in her face. When all of this is said and done Josie's facial symmetry should be improved and she'll be able to smile, pucker, and basically have control of all her facial expressions.

Truthfully, I dread every single surgery for Josie. But, the outcome has always far outweighed the gray hairs I've gained. Her sweet smile is the reason we push forward. We appreciate your prayers and as always, I'll do my best to post as surgery time comes closer. God bless!