Wednesday, April 20, 2016

A lot to Smile About

We had a great visit to New York this past weekend. It was a dual purpose trip for me as I was working a good portion of it with my sister, Holly at NY's bridal week. Holly has been modeling at markets for a wholesale bridal and prom company called Allure Bridals since she was 19. When Brooks and Josie were almost a year old Holly talked me into going on my first market trip and the rest is history. We look forward to these trips as much for the sister bonding as getting to see our second family with Allure.
Dave and Josie arrived in the city on Saturday and spent much of the weekend enjoying the sights before our appointments at the start of the week. Josie was able to stop by the bridal market and see what mom does when she says she's "working a market". I was tickled to get to show her off and for her to see her Aunt Holly in all the pretty dresses. It was definitely a memorable trip.

Dr. O & Dr. Waner
We spent a good portion of Tuesday morning in the offices of Dr. O & Dr. Waner. It always feels a little like coming home for me when we walk into their offices. Several of their staff have remained the same since we first met in November of 2011, even after they switched hospitals. I always have the strong urge to greet all of them with a big hug, but force myself to keep my arms at my sides.

Both doctors agreed that Josie's tumor showed little to no growth and that her asymmetries were due "simply" to differences in bone growth. Now I know shaving & shaping bone sounds awful and complicated, but it is a small victory to us that her tumor has stayed at bay for the past 2 years. Any bone work that Josie has had done in the past has healed relatively quick and given her little to no discomfort. We were enthusiastically given the green light to begin the reanimation process starting this summer (shaping the bone beneath her eye will also happen during this surgery).

Dr. O spent a good amount of time walking us through slides and video of the reanimation procedures as well as before and after photos and videos of patients. Their results were so exciting and reassuring to us, as were Dr. Waner's words..."there is a nearly 100% success rate". The following video is of a boy who had the reanimation procedures. While he has a different reason for facial paralysis, his results make my heart happy. The video also gives a good idea of what will happen clinically during Josie's procedures.


The Super Dr. Super

Dr. O and Dr. Waner were insistent that we meet a Maxillofacial surgeon that they have worked very closely with. I have to admit I had my reservations about meeting Dr. Super. I worried about opinions not matching up with our University of Iowa doctor and being forced to decide which was right. I worry way too much. 

While the meeting very nearly didn't happen due to a last minute emergency surgery & our overlapping appointments, the super Dr. Super made it happen for us. From our first hand-shake and exchange of greetings we were drawn in to Dr. Super. The picture used from his website does not do him justice, he was so kind-hearted and had this Santa-type smile. 

We went into our appointment with him knowing that he was out of network for us and that we'd have to cover the cost of the office visit. During our visit with him he said he wanted to take a baseline CT scan while we were there as well as photos. Knowing how much scans would be out of pocket I asked if we could wait to have the scans done at home with someone in network. Without hesitation he said "how about this...no charge." I know other doctors have done this, but for the most part this doesn't happen for us. We both thanked him profusely & his response was "see, we New Yorkers aren't all bad." He took his time, looked at her scans with us & agreed with our U of Iowa doctor in that her jaw bone is symmetrical and that he saw no problems or urgent needs other than preventative orthodontia. He is going to work with our Iowa pediatric dentist to set up a treatment plan. 

I looked at Dave after leaving his office and said all of that was well worth the $250 office fee. What peace of mind; that is just completely priceless to me. The only down side to the whole visit with Dr. Super was that we really, really liked him and want to continue under his care. He has treated other patients with Josie's diagnosis & he has a phenomenal track record (if you look him up). We're hopeful that our insurance works with us.

Speaking of looking him up, after our visit I was reading more about Dr. Super and found that he isn't just any old Maxillofacial surgeon. He is THE Chief of Oral & Maxillofacial Surgery at Lenox Hill as well as the Director for the Center of Dentofacial Deformities and Corrective Jaw Surgery. 

My take away lesson from this trip: it takes a village of specialists when it comes to treating complicated cases. I need to stop fearing what we'll find out next & just be thankful that God keeps opening all the right doors for us.   

Thursday, February 11, 2016

I am sorely overdue for sharing updates regarding Josie, but the truth is, since my last post (almost a year ago) there really hasn't been much to share. There has been a lot of boring footwork since then but I will spare you the details of all of that. The quick update is this...we did end up seeing a Maxillofacial surgeon in Iowa City last spring (at Dr. Waner's request) and his opinion was that Josie did not need to have Orthognathic surgery (reconstruction of the jaw) at this time. His recommendation was to monitor her on a yearly basis and if need be, have the surgery when she's 16. While we were very relieved to hear this, Josie's doctors in NY had warned us to expect this answer from most surgeons.

Fast forward 11 months and today you find us planning an April trip to New York. Josie's doctors would like to see her for a consultation before beginning the facial reanimation process, we are also going to be meeting with one of their recommended Maxillofacial surgeons while we are there. At this point details are pretty vague beyond that. We are very anxious to get our face time with her team of doctors and to have our numerous questions answered.

This whole process is very consuming and triggers a lot of emotions and anxiety (for our whole family). We have hesitated to talk about this trip, even with our extended family just to spare Josie's nerves. She has a lot of anxiety about surgeries and hates for us to talk about it in front of her. We're hoping this can be our quiet way to share updates without causing her added anxiety. Thank you to all of you who continue to ask about Josie and lend your support! It's hard to believe that this whole process began just 4 short years ago.

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 airport...so 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.

Surgery...
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.