Greetings friends! Lots to share since our last update. Mariel has come a long way in a short time. We had our second round of post operative x-rays last Friday, January 13 and they revealed a 4.1 cm gain of new bone cells (2.5 cm = 1 inch)! Mariel's total discrepancy when we started this process last month was 10 cm, so we are well on our way to equalizing her leg lengths. The x-rays also showed what Dr. Paley was looking to see happen before scheduling her second surgery. Friends have been asking what this second surgery was all about. Basically, Mariel's lower leg bones (tibia & fibula) were out of alignment and needed to be brought to an even place beneath her knee before the doc could proceed with lengthening (fracturing) her fibula. He set this alignment process up to happen during her December 15 surgery and has been watching the progress over these past weeks. When Dr. Paley reviewed the Jan 13 x-rays, the two bones appeared perfectly aligned and he said it was go time - or time to fracture the fibula to begin lengthening it. The second surgery happened this past Tuesday. I got a phone call 8:30 Monday evening instructing us to report at 5:30 the next morning! Needless to say, I didn't sleep much that night. Mostly because of anxiety, but also because I was so afraid I would oversleep! I was very concerned that Mariel would go crazy returning to the "scene of the crime"-- the pre-operative prep station, where we first took her for the December 15 surgery where you meet with the anesthesiologists, etc. To my pleasant surprise, she was *shockingly* calm, or in other words, completely out of her (nearly constant) evil queen character. She even traveled on the gurney back to the O.R. as if it were a float in the Rose Bowl parade, princess waving and bowing to passersby. Really, she did. The surgery was outpatient, successful and Mariel has been recovering beautifully this week. She is already back up on her feet and we have even made the first deduction to her shoe lift height. Mariel's former lift was about 8 cm. We had 3 cm removed from it this weekend. Can't begin tell you how nice it feels to be moving in the opposite direction on the shoe lift. After three years of watching the lift grow taller and taller, to see it become smaller is more than thrilling!
Highlight!!! We also had a last minute surprise visit from Dan this weekend. He must've sensed I was going over the edge ;) I'm just getting home from taking him to the airport. Having him here, even if only for a couple of days, was wonderful. It gave me a much needed break and Mariel joy that I haven't seen on her face since he left 10 days before. We had our first dinner out at a restaurant last night and we had a great time. Mariel resisted the idea at first, but once she was there she really enjoyed herself. She was glowing sitting at her dad's side -- in a booster seat at the table. Nice change from eating in bed with a lap tray! Slowly but surely we are beginning to see some light at the end of the tunnel back to normal living. We also visited the Quantum House on Friday night (a home similar to the Ronald McDonald House on the hospital campus). There are several children living there with either their mom/dad/grandparent who are wearing fixators and going through similar recoveries. We thought it would be a nice idea for Mariel to try and meet/play with some kids her age that she could relate to. It went okay, but Mariel was a little sassy and less than friendly this first time visiting, so I will try to take her there again this week. I however, loved meeting the other children and parents and sharing stories/supporting one another. I look forward to building these friendships over these next months. Amazing people from all over the U.S. and globe.
Gosh, I miss home/life before and I know Mariel does even more. I hope everyone is doing great and keeping warm. We really can't wait to see you all again! I'll be back with more soon - promise. Trying to do at least a weekly update. As always, I love all of the great notes/emails/etc, please know if I don't respond immediately that I do love hearing from you and appreciate your thinking of us very much. We enjoy hearing what is happening in your life too! Things have just been a little 'extra' this past week. Love to you all.
Sunday, January 22, 2012
Thursday, January 12, 2012
Put one foot in front of the other
Greetings from Palm Beach, where the weather was a balmy 75 with a giant sunshine today. Not too shabby for January 12. Happy to hear it's been a mild winter for everyone up north thus far. Dan left Monday to return home and I'm especially happy he didn't have to deal with any snow when he got there. I'm especially unhappy however, that he is no longer here. He's pretty awesome. I realize more than ever just how helpful he is to me and how much of a wonderful dad he is to Mariel. Thankfully, he received an amazing gift before leaving -- getting to see Mariel up on her feet for the first time in 3 and a half weeks! Monday was a milestone day at physical therapy. Mariel took her first few steps with the aid of a walker. Each day this week since, she has walked a few steps further. She even shot some hoops and played ball with a lovely young lady from the Netherlands (a five year old, also here having her first lengthening). As Mariel's leg continues to grow, the lift on her shoe will be cut down accordingly. In other words, as more length is gained in her leg, the lift will get smaller and smaller until she is on even soles. Pretty cool, huh? We have our second follow-up appointment with Dr. Paley tomorrow during which more x-rays will be taken and new growth amounts will be determined. We'll also find out more about the next surgery she needs and when it will be scheduled. Wish I could say that Mariel is becoming more agreeable, however, she is still in a great deal of pain on and off throughout the day and night. She also is missing her dad and friends at home. Needless to say, she is less than happy most of the time. We've been using FaceTime each night with dad and hope to set up some calls/Skype time with friends soon.
We've gotten a few wonderful packages from the amazing teachers and adorable children of Mariel's preschool program, Five Mile River Nursery School. Yesterday we opened a beautiful photo album of fall memories from the classroom and personal notes from the teachers. Mariel was so happy to "see" everyone. She can still name everyone in the class and can't wait to get back to school. They have also sent paintings and personal notes from the kids. She is working on a self portrait to send back to the class -- among some other of her "Mariel masterpieces" as she calls them. The cards, letters, emails, texts, etc. continue to brighten both of our days and we appreciate them so much. Thank you!
In other news, my dad, Mariel's poppy arrived last weekend and he will be with us throughout our time here. My dad loves to cook and he has made us quite a few nice meals already. This alone is very helpful as caring for Mariel without Dan's help is filling my day more than ever. We also had a wonderful visit with our dear friends Beth & David, during which we enjoyed amazing sushi and Thai food and even got in a nice walk on the beach. B&D brought Mariel an entire litter of tiny stuffed kitties, all individually wrapped. Such a perfect gift for her - she loves little kitties and they even meow! It was great to see our good friends and have some much needed laughs.
Another highlight this week was that our friends Kate, Tim and Emily Tredwell welcomed sweet baby Paige! Warmest congrats to them!
Now back to our regularly scheduled program: Put one foot in front of the other... and soon you are walking cross the flo-or-or! A little bit harder, just a little bit more, a little bit further than you've gone before.
We've gotten a few wonderful packages from the amazing teachers and adorable children of Mariel's preschool program, Five Mile River Nursery School. Yesterday we opened a beautiful photo album of fall memories from the classroom and personal notes from the teachers. Mariel was so happy to "see" everyone. She can still name everyone in the class and can't wait to get back to school. They have also sent paintings and personal notes from the kids. She is working on a self portrait to send back to the class -- among some other of her "Mariel masterpieces" as she calls them. The cards, letters, emails, texts, etc. continue to brighten both of our days and we appreciate them so much. Thank you!
In other news, my dad, Mariel's poppy arrived last weekend and he will be with us throughout our time here. My dad loves to cook and he has made us quite a few nice meals already. This alone is very helpful as caring for Mariel without Dan's help is filling my day more than ever. We also had a wonderful visit with our dear friends Beth & David, during which we enjoyed amazing sushi and Thai food and even got in a nice walk on the beach. B&D brought Mariel an entire litter of tiny stuffed kitties, all individually wrapped. Such a perfect gift for her - she loves little kitties and they even meow! It was great to see our good friends and have some much needed laughs.
Another highlight this week was that our friends Kate, Tim and Emily Tredwell welcomed sweet baby Paige! Warmest congrats to them!
Now back to our regularly scheduled program: Put one foot in front of the other... and soon you are walking cross the flo-or-or! A little bit harder, just a little bit more, a little bit further than you've gone before.
Wednesday, January 4, 2012
Happy New Year!!!
Hi everyone, it's Dan here taking a turn blogging on Mariel's Rose. First things first: Mary and I want to wish everyone a very happy new year! This has been a bizarre holiday season for our family to say the least. We departed for Florida on December 11, and with everything we needed to do before we left we didn't even get around to sending out holiday cards this year. We hope all of your holidays were wonderful and that all of our friends and family have gotten off to a fantastic start to 2012.
We also want to thank and acknowledge all of you who have reached out to us during the past few weeks. So many of you have sent cards and gifts to Mariel, going above and beyond the call of duty, and we really can't thank you enough!
We just have to mention specifically that several of Mariel's Possum Lane friends contributed to a little photo album that our next-door neighbor Kelly so graciously organized (unbeknownst to us). The gift was wrapped with strict instructions not to open it until Christmas. When we opened it we discovered that it included photos of our house, photos of each of the children and artwork and personal notes from each of them. Mariel lit up when she opened this gift and has asked to look through it several times since. This really brought a tear to Mary's and my eyes. What a touching, thoughtful gesture.
We also must send HUGE THANKS to Mary's sister Janine, her husband Craig and their precious daughters, Julia and Samantha, who literally brought Christmas to us in Florida. They showed up at our condo on Christmas morning with a Christmas tree (which was decorated in record time by the girls), an enormous amount of food and tons of beautifully wrapped presents for Mariel. Mariel was genuinely excited all day long to have her aunt, uncle and cousins (with whom we traditionally spend Christmas) here at our "home away from home," and they really made it feel like as normal a Christmas as it could possibly feel under the circumstances. Thank you from the bottom of our hearts -- we will be forever grateful.
Our days caring for Mariel have normalized to some extent. Our primary daily events are physical therapy every morning and the one we *all* dread -- wound care -- every evening. Surrounding these events are a plethora of less burdensome, but vital, responsibilities such as medication/pain management and our four-times-daily fixator adjustments (which is how we're actually growing Mariel's femur and tibia).
We have started to venture out and try to have some fun for a few hours here and there, the biggest challenge being that Mariel is not mobile and has to stay in her jog stroller whenever we're not at home or in the car. We had a truly wonderful lunch a few days ago at an excellent, funky restaurant (with a terrific beer menu) up in Jupiter called Little Moir's Leftover's Cafe. Thanks to Servando, one of Dr. Paley's amazing assistants, for the fabulous recommendation. Servando also recommended DuBois Park in Jupiter where the waves and current are gentle. We enjoyed a few hours there and plan to take Mariel in the ocean when the air temperatures warm up (we're currently experiencing a cold snap) as seawater is highly recommended for pin site healing and disinfection purposes.
We also spent a few hours on Saturday (New Years Eve Day) at a fantastic park just 10 minutes from our condo, John D. MacArthur Beach State Park. This place is simply amazing, with fantastic trails, an awesome 1/3 mile boardwalk/footbridge that crosses the inter-coastal waterway (see pic), and absolutely beautiful beaches with tons of seashells. We found this park to be so serene -- "just what the doctor ordered" -- and we'll definitely be going back soon!
Other than all of the medical challenges, the biggest "stressor" for us all right now is that my time down here on this visit will be coming to an end this Monday when I have to fly home to Connecticut and get back to environmental law and teaching, leaving Mary and Mariel here in Florida to continue the *really hard* work of growing bone. This will be difficult for our family on so many levels. As difficult as it will be for Mary and me to be apart for weeks at a time (I know I will miss her like crazy), I'm confident that we will handle the separation just fine. I'm most concerned about separation anxiety for Mariel who is used to spending "quality time" with her dad at a minimum every morning and every night during the work week. Over the last month we've literally been together 24/7 every single day. She has truly become a daddy's girl, and I worry about how she will handle not seeing me for 3 weeks, especially in light of what she's currently going through medically (Oh, who am I kidding? I really worry about how *I* will handle not seeing *her* for three weeks!!!). We plan to keep in daily touch using Facetime and Skype, and our time apart will just have to be one more challenge that we will all conquer together as a family.
We also want to thank and acknowledge all of you who have reached out to us during the past few weeks. So many of you have sent cards and gifts to Mariel, going above and beyond the call of duty, and we really can't thank you enough!
We just have to mention specifically that several of Mariel's Possum Lane friends contributed to a little photo album that our next-door neighbor Kelly so graciously organized (unbeknownst to us). The gift was wrapped with strict instructions not to open it until Christmas. When we opened it we discovered that it included photos of our house, photos of each of the children and artwork and personal notes from each of them. Mariel lit up when she opened this gift and has asked to look through it several times since. This really brought a tear to Mary's and my eyes. What a touching, thoughtful gesture.
We also must send HUGE THANKS to Mary's sister Janine, her husband Craig and their precious daughters, Julia and Samantha, who literally brought Christmas to us in Florida. They showed up at our condo on Christmas morning with a Christmas tree (which was decorated in record time by the girls), an enormous amount of food and tons of beautifully wrapped presents for Mariel. Mariel was genuinely excited all day long to have her aunt, uncle and cousins (with whom we traditionally spend Christmas) here at our "home away from home," and they really made it feel like as normal a Christmas as it could possibly feel under the circumstances. Thank you from the bottom of our hearts -- we will be forever grateful.
Our days caring for Mariel have normalized to some extent. Our primary daily events are physical therapy every morning and the one we *all* dread -- wound care -- every evening. Surrounding these events are a plethora of less burdensome, but vital, responsibilities such as medication/pain management and our four-times-daily fixator adjustments (which is how we're actually growing Mariel's femur and tibia).
We have started to venture out and try to have some fun for a few hours here and there, the biggest challenge being that Mariel is not mobile and has to stay in her jog stroller whenever we're not at home or in the car. We had a truly wonderful lunch a few days ago at an excellent, funky restaurant (with a terrific beer menu) up in Jupiter called Little Moir's Leftover's Cafe. Thanks to Servando, one of Dr. Paley's amazing assistants, for the fabulous recommendation. Servando also recommended DuBois Park in Jupiter where the waves and current are gentle. We enjoyed a few hours there and plan to take Mariel in the ocean when the air temperatures warm up (we're currently experiencing a cold snap) as seawater is highly recommended for pin site healing and disinfection purposes.
We also spent a few hours on Saturday (New Years Eve Day) at a fantastic park just 10 minutes from our condo, John D. MacArthur Beach State Park. This place is simply amazing, with fantastic trails, an awesome 1/3 mile boardwalk/footbridge that crosses the inter-coastal waterway (see pic), and absolutely beautiful beaches with tons of seashells. We found this park to be so serene -- "just what the doctor ordered" -- and we'll definitely be going back soon!
Other than all of the medical challenges, the biggest "stressor" for us all right now is that my time down here on this visit will be coming to an end this Monday when I have to fly home to Connecticut and get back to environmental law and teaching, leaving Mary and Mariel here in Florida to continue the *really hard* work of growing bone. This will be difficult for our family on so many levels. As difficult as it will be for Mary and me to be apart for weeks at a time (I know I will miss her like crazy), I'm confident that we will handle the separation just fine. I'm most concerned about separation anxiety for Mariel who is used to spending "quality time" with her dad at a minimum every morning and every night during the work week. Over the last month we've literally been together 24/7 every single day. She has truly become a daddy's girl, and I worry about how she will handle not seeing me for 3 weeks, especially in light of what she's currently going through medically (Oh, who am I kidding? I really worry about how *I* will handle not seeing *her* for three weeks!!!). We plan to keep in daily touch using Facetime and Skype, and our time apart will just have to be one more challenge that we will all conquer together as a family.
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