Monday, March 4, 2013
Since January Dave and I have been busy planning Josie's upcoming surgery with Dr. Waner; booking flights, reserving housing, etc. Everything had been checked, confirmed, and double checked (surgery date included). Last week I emailed Dr. Waner's P.A. for the pre-op physical forms and she called back Friday stating that the surgery date needed to be moved from the 21st to the 25th of March. She said this was due to the availability of the nerve monitor at the different hospital we'd be at (I'll save you an ear-full and just say the change of hospitals is a story for another day). Anyway, the P.A. was going to call us back to confirm the new surgery date later on Friday, but when she called back she gave us some news we were not expecting. Evidently Dr. Waner decided to look through Josie's chart and he now wants to post-pone her surgery 6-8 months. He wants her to be 6-years old now, to grow a little (he says he didn't realize how young she was). I have been beyond disappointed, I had to give myself the weekend to even type this. I'm trying really hard to accept that this has all happened for a reason and I need to trust it, but right now all I can see is that someone dropped the ball. We have been trying so hard to have the bulk of her procedures behind her by kindergarten and now it appears it will land in the middle of it. Again, I'm trying to trust that there is a bright side to this, I'm just not completely there, yet. Besides venting, we wanted to update everyone on Josie's surgery changes. I'm not sure when we'll know any news on future surgery dates, but I'll be sure to post when we find out.
Posted by Josie at 8:49 AM
Thursday, November 1, 2012
I have to admit that I have slacked on my blog posts for Josie since her last surgery. After a year of having our constant focus be on the next surgery, I guess I just needed the mental break from thinking about it all. I don't know how I compare to other parents in similar situations, but I feel like I lost myself a little this past year. I was always charging forward, always had my eye on the prize but there weren't too many times that I remember laughing or feeling light-hearted. Of course I celebrated in the milestones and felt grateful beyond words but I never realized how heavy my burden was until it was lifted. I know a lot of it was just something we had to go through and face because it was our journey to take but God help me I will walk a little lighter in 2013.
To bring everyone up to speed with Josie, she will be facing two surgeries (at the least) in the upcoming year. The purpose of the two surgeries will be to make Josie's smile whole. The first of the two will happen in March during her spring break. A nerve will be grafted from her leg and placed in her face. The second surgery will be scheduled for mid-summer. During this procedure a muscle will grafted from her leg and placed in her face, a little more of the tumor will be removed from her lower cheek as well. This is the simplest I can explain two not-so-simple procedures.
Below are a few current pictures of Josie. While we think she looks amazing what we are proudest of is how well she is doing in school. We had our first parent/teacher conference this week and according to her teacher she has many little friends that she runs around with and actually shoos her brother away at times. She is really stepping out on her own and becoming such an independent little lady.
Posted by Josie at 8:38 PM
Wednesday, September 26, 2012
|One year ago...|
Four years ago around this time I was sobbing as Dave and I drove home from Iowa City. We had just received the 3rd of our 2nd opinions from a surgeon who explained that there was nothing (in his opinion) that could be done for Josie. I felt broken and hopeless that day.
|4 years ago...|
One year ago this month I was fighting our insurance company to cover an out-of-network doctor in New York. This doctor; the answer to our prayers, said he had experience with Josie's type of tumor and who with confidence said he could remove her tumor and get her to "normal". I was stressed, sick with worry, and frantic at the thought of our insurance company denying Josie such an amazing opportunity but at the same time determined to make it happen no matter what. Dave and I knew this journey would be life altering and that it would be worth fighting for.
|Before 1st Surgery with Dr. Waner, January 2012|
|Weeks after surgery #1|
|Before surgery 2, April 2012|
|After surgery 2, not happy|
|A week after surgery #3, July 2012|
|2-3 weeks after surgery 3, July 2012|
|3 weeks after surgery 4, August 2012|
|Today, 6 weeks after surgery 4|
Posted by Josie at 7:01 AM
Friday, August 31, 2012
This week marks 3 weeks post-op of surgery #4. It also marks the start of the school year for 2 very excited pre-k students. How the heck did those 2 tiny babies turn 5 this year??? I may or may not have bawled the whole ride home after dropping them off for school that first morning (then off and on throughout the morning). I think watching our kids grow up is the most heart-breaking thing. I feel honored to raise them but its heart-breaking at the same time. I can visibly see them growing and I want it all to slow down. Life passes us by too quickly, I know I'll blink and I'll be driving them to college.
|First Day of Pre-K|
|They were so excited to have their names stitched on their backpacks! ...Millie cracks me up:)|
|Running into the school, they could not wait!|
|Millie running after them (with her backpack on, too).|
|Hanging up their bags in their locker. Millie had to hang her's up, too. She wanted to stay with them so bad!|
Posted by Josie at 8:42 AM
Thursday, August 23, 2012
I'm not going to sugar coat the last week and half, its been rough. Since our family was reunited last Tuesday; which feels like months ago now, we've been running against the current. I won't go into all the ugly details of last week but to summarize, with the help of Josie's doctors we pulled together a surgery with an Ophthalmologist that Josie has never seen before in 3 days. It was an accomplishment to say the least (only a few tears of frustration were shed). My great piece of advice to any parents out there is to develop good relationships with all of your child's doctors and to be persistent in their care. They can serve as great advocates for our children and open doors that we can't. My tears of frustration came from trying to juggle information between 3 and sometimes 4 different docs last week, I felt like more of a nuisance than I cared to but in the end it ultimately paid off. Between a handful of doctors, one of which is in an entirely different state, they helped pave the way for Josie. Her tear duct surgery with Dr. Suh was a success on Monday with only a few tears shed by mother, daughter, and a tender-hearted nurse. Her sutures were also removed in the process. Dr. Franks removed her drain last Friday and has helped to keep an eye on her sutures inside of her mouth. We have said out loud so many times "thank God for Dr. Franks, we don't know what we'd do without him".
Today Josie is busy healing and getting back to her happy-go-lucky self. School starts next week and both kids are really eager to get this school year started. We are all breathing a sigh of relief that the surgeries will cease for a little while. I know next spring/summer will be here before we know it but I'm giddy at the thought of normalcy for a little while (I know Josie is, too).
While this trip was stressful to say the least, the staff at Roosevelt Hospital took extraordinary care of Josie (and Dave for that matter). Before Josie was discharged one of the nurses gave her a bag of Disney Princess costumes to take home and even threw in a costume for Millie. This picture is of the girls enjoying their new ball gowns:)
In the middle of our crazy life last week we did take an afternoon to go enjoy the state fair. I had promised the kids and it was the one thing that Josie got really excited about.
|In the butterfly garden at the fair|
|Enjoying her pony ride at the fair|
I know I sound like a broken, sappy record but I can't thank our families enough for all that they've helped us with over this past year and all that they'll continue to do down the road. To our amazing friends; some old & some new, I thank God every day for you. You've literally helped to shape our little girl's future and I love you for loving her.
Posted by Josie at 10:20 PM
Tuesday, August 14, 2012
Today I could hardly wait for our family to be reunited! Dave and Josie's flights were on time and the kids and I were anxiously waiting to greet them in the airport when they arrived. Josie looks beautiful; her mouth is much more symmetrical and she has these dainty little lips now...perfect for putting lip gloss on :-) Her eye is still very swollen but has opened up more. The doctors in NY found that Josie has a clogged tear duct in her left eye; they tried to correct it while they had her in surgery but said they "couldn't reach it". Today I've been trying to track down a Pediatric Ophthalmologist to correct it. The NY docs suggested having the specialist that corrects her tear duct also remove the stitches below her eye. This is proving to be a challenge because of the time crunch but Josie's optometrist has pulled some strings for us and we have an appointment for tomorrow at 7:30 a.m. for a consultation. Fingers crossed this specialist can squeeze her in by the date she needs her stitches to come out. The down-side to her not getting into the Ophthalmologist soon would be that she'd be put under anesthesia twice. The first would be with Dr. Franks, who would put her under to take out the stitches and remove her drain and then the second time would be for the tear duct procedure. In my opinion that's one too many times, but I'm trying to keep an open mind.
The best news from this whole chaotic trip/surgery is that Josie doesn't have to go back for more surgeries until next summer!!! Once we get this tear duct surgery out of the way, I think we'll definitely feel the weight of our worries lift and welcome normalcy for awhile.
Next summer Dr. Waner wants to do the nerve and muscle transplant, which would be broken up into two surgeries. The first would be the nerve graft and the second would be the muscle graft. These procedures will help Josie's facial expressions on her left side. She'll be able to lift her smile, frown, pucker, maybe even whistle or blow out her birthday candles (that last one is a big deal to her). Right now her left side around her mouth is somewhat comparable to a person who has suffered a stroke.
That more or less sums up our updates. The one thing that everyone always asks is "how many more surgeries?" and I wish I had a clear cut answer for that. The procedures I know of for sure are the two next summer and at some point they will remove the tumor on her forehead. Its hard to say how many steps there will be in-between. One step at a time, right now I'm basking in the glory of being surgery free for awhile!
Posted by Josie at 8:06 PM
Saturday, August 11, 2012
|Josie this morning|
This morning Josie woke up feeling pretty good according to Dave, and then he added that "she just looks a little beat up". He said she didn't feel up for eating but after some coaxing she did manage to eat a banana. Dr. Waner said if she ate and she drank then she was free to be released so around lunch-time today she was able to go back to the apartment. Both she and Dave have been resting most of the day. He said they managed to take a short walk outside to get some food but said she still doesn't have much for an appetite. I have talked to them both several times today and was able to skype with them this evening. She showed me the bear the hospital staff gave her. She said she named him Ralphie to go along with her bear Alfie that she has with her. She had her bright smile shining the whole time we skyped which helped this mother's heart immensely.
Dr. Waner was in to see Josie this morning during the 10 minutes that Dave left to grab breakfast so he missed talking with him directly. Josie does have an appointment to see Dr. Waner on Monday for a follow-up so we'll hear his thoughts at that time. Below is a picture that Dave sent of Josie later today, she was smiling and I think that says a lot!
|Josie later today|
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Posted by Josie at 9:16 PM