Monday, March 2, 2015

Next Steps . . . Ortho-what???

It's been nearly 3 months since I last posted. In that time Josie has quickly bounced back to her happy self, we survived celebrated the flu holiday season, and the scars of surgery #6 have already begun to fade. Watching Josie heal is truly a beautiful thing.

Next Steps . . . Ortho-what???
We were sent home from New York with the good (and scary) news that Josie gets to have her next surgery at home. We were given instructions to find a good maxillofacial surgeon that can perform an orthognathic surgery (Josie's upper and lower jaw-bone is over-grown due to her tumor so this surgery will correct that). I think it is so stressful shopping for a great surgeon and I shared my concerns with Dr. O before we left NY. She assured me that they would give the final blessing in our selection and that has given us a little more confidence in this whole doctor shopping process.

We decided to start our search by talking with our pediatric dentist and from his suggestions we now have two doctors that we will be meeting with in the coming weeks. Our first appointment will be at the University of Iowa next week and then the following week we will meet with a doctor in Des Moines. Once we have selected a surgeon, Josie will most likely have surgery this summer.

Josie will have to undergo another MRI at some point this summer, they will be looking for any sign of re-growth in the tumor. If there isn't any significant growth, and once the orthognathic surgery is behind us, Josie could technically begin the reanimation procedures at anytime. I find myself constantly trying to look ahead and guess what will be best for Josie (that's the planner in me) and all the while I know what experience has taught us . . . we just need to cross one bridge at a time. Always easier said than done. So that is where we are right now and that is where I'll leave you.
Just noticed poor Millie in the background . . . she had the flu :(

Tuesday, November 25, 2014

Coming Home...

Our bags are packed, our room is clean & now we just hurry up and wait until it's time to go home. Our flight isn't until 7 so I'll post a few of our adventures from the past couple days...

Our friend from home was in the city for his job, so we arranged to meet up Sunday. His friendly, familiar face was just what we (I) needed and I know I talked so much that he really didn't get too many words in edge-wise. He absolutely spoiled us by taking us to see the Rockettes at Radio City Music Hall. His visit was hands down the high-light of this trip.

Josie had an appointment with the clinic yesterday. We ended up leaving with the drain in & were to come back this morning to possibly have it removed. In our spare time Josie chose to go back to FAO Swartz, this time our moods were much lighter. We discovered life-size characters made of Legos that we'd missed last week (Josie is posing next to the big man himself above). It was such a beautiful day out yesterday (68 degrees), so we walked extra slow back from the toy store.

We went to the clinic early this morning and again left with the drain still in. They said her forehead looks "perfect", her incision looks great, her drain amounts are going down, but Dr. Waner said he'd like to be cautious & leave it in for a few more days. We are a-okay with his decision. We found a soft head band yesterday that protects her incision & drain tube, it is much cooler than the winter hat she has been choosing to wear.
We are currently killing time in the RMH playroom. The artist is busy with her latest creation. Just 30 more minutes and our cab arrives to take us to the ready to be one step closer to home!!!

Sunday, November 23, 2014

This & That

Before we left for NY last week a dear friend of ours messaged that he would be in NY for business during our stay & we have arranged to hang out today. While we are anxiously awaiting his arrival I thought I could pass some time by posting a few pictures for updates. 
Josie's incision is very hard to show with pictures, but essentially it starts at the temple just into her hairline & zig-zags along the hairline all the way across to the opposite temple. I haven't counted, but there are lots of little staples in there. She tells me that it really itches, but otherwise has no pain. She was only on Tylenol & Motrin for the first couple days. 

It's pretty obvious where they put the drain in, we are hopeful this can come out before we fly home Tuesday night. You may notice two tiny sutures in the middle of her forehead, this is where they released fluid before they inserted the drain. I wish I had a before picture showing the swelling, but I guess you'll just have to take my word that the drain helped tremendously. 
After Josie's bandages were removed & the drain inserted, we were told no hair washing until the drain is out. For the first couple of days Josie resorted to wearing a knit hat I had brought for myself. It has worked perfectly & I'm so glad I brought it. Yesterday I was able to lightly comb through her hair & put a couple loose braids in. Since then she's ditched the hat :-) 
Yesterday we had a wonderfully boring day of laundry & movie marathons. We ended our day with the RMH annual PJ Party Night. Volunteers from The Company Store served a great meal and Josie & I were given some pretty sweet holiday PJ's (pictured above). We participated in some fun activities & games, it was a great way to end our day. 

Tomorrow we head back to the clinic to meet one last time with her doctors. They'll check her incision, possibly remove her drain, and we'll talk more about next steps. It's supposed to be a balmy 68 degrees, so if there's no rain, you'll most likely find us in the park! 

Friday, November 21, 2014

Bump in the Road

Waking up after surgery last night.
If we've learned anything in this journey, it's been to expect the unexpected. Sometimes the unexpected is great; like getting to recover in the comfort of our room at the Ronald McDonald House (RMH) last night after surgery (rather than the hospital). Sometimes its just a change of plans; like changing the procedure they'll do next. Sometimes it's something that's just plain hard to accept; like the day we've had today. Most of the time its a mix; but, even after the hardest of days, the one constant we can count on is that it's all for the best interest of Josie.

First and foremost, yesterday's surgery was a success (our ultimate goal). Josie was very anxious going into this surgery, much more this time around (she's getting older and her last surgery is still so fresh in her mind). But, God answered some prayers and we landed an exceptional anesthesiologist who helped to turn a big scary surgery into a more tolerable one. When Josie woke up from this surgery she was calm and very relieved, in fact the first words out of her mouth were "I'm so glad its over" and "I like the way that Dr. did the mask". Home run! Her doctors reported that they removed all of the tumor on her forehead and discovered that there was an overgrowth of bone next to the tumor about the size of a quarter, which they shaved down. They also added that Josie would have a compression wrap on her head for 24 hrs rather than a drain (typically this incision doesn't require one). This tumor, as we have been learning, effects all of the tissue around it. We are also learning the way it reacts after being removed, but we will discuss that in a little bit. 

Bump in the road...
We came back to the RMH last night and got to rest in the comfort of our room. Josie had been complaining of her eyes burning and I had noticed that her forehead was starting to swell (which I wasn't worried by). Both of us were completely exhausted and sound asleep before 8 o'clock and other than getting up to give pain medicine once, we slept a solid night's sleep. We woke up early this morning with no burning eyes, head swollen a little more (still wasn't worried), and spirits completely refreshed. We were expecting an easy day of going to the clinic for a quick check-up at 9 followed by a day of lazy recouping. However; after just a few minutes with Dr. Waner, we learned that we'd be returning to the surgery center in the afternoon to have a drain put in. He said they are learning that this type of tumor produces a lot of fluid (I can't remember the technical term for the fluid) when removed. To say our hearts sank would be putting it lightly. I wanted to bawl, but I knew I couldn't. In an attempt to keep Josie's spirits up I offered to take her anywhere she wanted for the 3 hours we had to kill. She chose FAO Swartz (the big toy store), so that's exactly what we did. But even a giant toy store can't cure all things and there were huge silent crocodile tears when we returned to hospital admitting. They lasted all the way up to pre-op and that's when we met with our anesthesiologist friend. For some reason he has this remarkable ability to calm her. He soothingly talked her through the entire process and after my brave girl drifted off in my arms for the second time in two days I went to an empty waiting room and lost it. 

Being a grown-up is hard...
It's been an incredibly long several days and I've had a lot of time to sit and think and reflect. I'm learning first hand that nothing good and wonderful comes without pain. Seeing Josie cry with anxiety and suffer with pain after each of her surgeries is absolutely unbearable. Today was no different. I struggle with staying positive after each of her surgeries, because after each one comes the discussion of what's next. The weakness in me says "she can't do this again...I can't do this again...why her?". It's dangerously easy to get frustrated and want to toss in the towel, I've had so many moments today. Luckily God has stayed with me and he whispers reason into my ears when I have none and restores my soul when I have nothing left. Today was no one's fault, its the nature of a disease that we are gradually learning more about. So tonight I stop, I take a deep breath in, and as I watch sweet Josie sleeping next to me I am choosing to celebrate all the little victories we've had and how very far she's come. The greater the battle the sweeter the victory. Hopefully tomorrow is a more predictable day.

"Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Matthew 11:28-30. 


Thursday, November 20, 2014

Short & Sweet

Josie went in for surgery just before 11 this morning. I was told to expect a shorter surgery (just 2-3 hrs). We even get to go back to the Ronald McDonald House to recover this evening.

Josie had so many nerves going into today, but we hit the jackpot and landed the greatest anesthesiologist she's had, yet. I've shared with you how much Josie despises the gas mask (specifically the smell of the gas) and this doctor went well above and beyond to make sure Josie had the most positive, comfortable experience that she could have...he even had a personality to boot! I'm sure this sounds so trivial, but an anesthesiologist can totally shape a child's outlook on surgery, especially when they have to face surgery after surgery. Dr. Gingrich (the greatest anesthesiologist) actually got Josie to smile. This is just huge for her because she is painfully shy with new people plus add in the stress of surgery=HUGE. I know I say this a lot while we're here, but I'm just so thankful.

Tuesday, November 11, 2014

Surgery #6

It's been 5 months since Josie's last surgery and updating her blog has been on my to-do list for at least 3 of those months. I've always been one that works better under a deadline I guess.

So let me dive in and start with her progress. Before each of Josie's surgeries I find myself thumbing through old posts & pictures for motivation. I think her pictures speak volumes and they are a valuable reminder of how far she's come. Below is a picture of Josie from 3 years ago, just before her first surgery.

November 2011
Prior to Surgery #5 in June

Today, look how far she's come!!!

Another bit of progress that I'd like to share; since birth Josie has had more MRI's than I can remember. For all of those scans (with the exception of one when she was 2 months old and slept through it) she has had to be sedated in order to keep her still for scans. Sedation is such a nerve-wracking process for both Josie and Dave and I. With Josie's recent MRI she bravely (through a few tears) climbed onto the MRI table and laid patiently through 45 minutes of scans without sedation! I was so incredibly proud of her and I could tell she was pretty pleased with herself as well. This was such a huge milestone for her; it means no more fasting after mid-night, waking up sick and cranky from sedation, and sitting in the recovery room waiting to feel well enough to go home. I asked Josie what she thought about for those 45 minutes she was in the MRI machine and she sweetly said "I thought about my friends and what they were doing in school".

So what's next? Josie and I will fly out early next Wednesday for New York and surgery will be Thursday, Nov. 20th. We won't find out her surgery time until next Wed. This surgery will focus on removing the tumor that is on her forehead. Her doctors explained that this procedure will be "easy" in comparison to past surgeries as there isn't a major nerve to work around. Her incision will be a zig-zag cut in her hair above her forehead.  We've been told that we'll never see a scar from her incisions and if I'm remembering right she shouldn't have a noticeable amount of hair shaved for her incisions.

Josie is feeling pretty apprehensive about this surgery as the last one is still pretty fresh in her mind. Please pray for her to stay healthy for surgery (there are so many bugs going around school right now), for her strength and peace of mind, to guide her doctors hands, and for our safe travels. Until next week....

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)