Tuesday, April 30, 2013

Day 62- Murphy

Tuesday 4/30/13

We have all missed Murphy! He's kind of like Curious George- always getting himself in trouble but you can't help but love him anyway! Of the girls, Em definitely misses him the most.

I felt I needed to give some love to the poor guy as he's been getting in a little extra trouble as of late. A few days ago, we received an update from the Remy's that Murphy is a huge supporter of the Girl Scouts. I was not surprised in the least bit when Trina explained that Murphy decided to test out Alice's Girl Scout cookies. I mean can you really blame him... those things are delicious! Then I get an update that Murphy decided to brown bag it today. Murph thought it was awful nice of one of the workers at Trina's, to fix him a lunch and leave it around for him to help himself too. Trina said he was lucky the guy liked him... I think I'm lucky that Auntie Trina made the guy a better lunch than he had! Don't fall into the trap of those guys blaming everything on my dog so they get the home cooking!

So, like everyone's favorite monkey, Murphy gets away with pretty much whatever he wants. Sorry Auntie Trina... but I do need to ask, why doesn't he get in trouble when your away? I'll leave Arnaud or Oreo to answer that question for us.

Mom was very excited to see him but was a little bummed out that he gave her the cold shoulder when she left.

Tonight we had a more relaxing dinner with the Benson's at our place. Our girls didn't want to see them go and we are now getting the questions of... when are we going back to NH???

Grace's Update!

Thank you Kevin for allowing me to share what great looks like and for others to enjoy a more professional view from a parents perspective!


Grace, Mandy and I returned to the Paley Advanced Limb Lengthening Institute today for a fresh set of x-rays and check up on Grace's overall progress. We are very happy to report that Grace has achieved the full expected 50mm of length to her left leg -- ~ 2 inches -- and maybe even a little extra. Dr. Dror Paley, Grace's surgeon, is very pleased with her progress. It was inspiring to see a man who has done literally thousands of these procedures look at Grace's x-ray and leg and literally light up the room with a big smile, saying, "the bone is heeling so well, I couldn't do any more with it even if I wanted to (unless he were to break it again!)." Grace's leg really is as straight as an arrow, and as long as her right leg. It is amazing to see in person. I wish you all could. Grace seems to have hit a growth spurt during all this, so we are hoping she will still be "even" when the brace finally comes off!

So we are finished turning struts. Lengthening and straightening is complete. We are now in the "consolidation" phase [Toast Glenlivet here] , giving the new bone time to fill in and harden. The fixator stays on, and we leave it alone, for 1-2 months. From here, we wait four weeks and then get a fresh set of x-rays. Dr. Paley will read those x-rays and determine if Grace needs one more month of consolidation, or if we can schedule the removal of the external fixator. Removal of the fixator is a quick surgery and we should only be in West Palm for 2-3 days for that. He also said he feels like the plate in her knee has done its job of fixing the bowing-in of her knee and he will likely remove that plate at the same time. We forgot to ask about the plate in her ankle, but maybe that will be ready to come out as well? We have started preparing Grace for the idea of having the fixator off. She likely doesn't remember it ever not being on her leg. We are told that many of the kids Grace's age get very offended when you tell them the fixator is coming off. They see it as a part of their body and get very confused as to why you would take it away. Can you imagine?

During the surgery to remove the fixator (mid-June), x-rays will be taken and a determination will be made on the spot as to what kind of cast Grace will go into for the final four weeks (weight bearing or non-weight bearing, based on how her overall bone strength looks). The cast is necessary not to protect the new bone growth, which will be fully hardened (consolidated) by then, but to protect the open holes left in her bones from the rods and pins being removed. Her tibia and ankle will look like swiss cheese after the fixator is taken off, and now those holes need time to fill back in. The cast comes off after roughly four weeks, and then we are finished. Not bad for six months of hard work!

Public Service Announcement: The alternative to limb lengthening is amputation. There is no other option besides these two. Many doctors in our country, having been fully educated on the option of limb lengthening, will decide on their own that the procedure(s) is "too much emotional strain" on the patient and the family and will simply recommend amputation, willfully withholding education about the limb lengthening alternative. We find this to be gross negligence on the part of practicing physicians. If you ever hear of someone in our situation (1:70,000), please speak up and make sure they have been offered the opportunity to lengthen before they agree to amputate an otherwise beautiful, healthy, sweet little leg.

I have attached a .ppt of Grace's leg immediately after surgery, and what it looks like today. There are three (of 14) primary posts. One at the north end (#1) and two and the south end (#2, #3). Look at the difference between #1 and #2 and you will see how much Grace's leg has grown since surgery on 8 January - 14 weeks. Truly miraculous. Truly our Amazing Grace.

Thank you all so much for all your prayers and encouragement throughout this process. You have each strengthened Mandy and me and helped us be strong enough to help Grace. We are eternally grateful.


Kevin, Mandy and Grace"

Day 61- Paley Appt!

Monday 4/29/13

We had our appt with Dr. Paley today and all is on schedule!!! We are at 42mm with good bone growth. Dr. Paley was happy with our progress but did make us aware that it is possible that a tweak to the turning schedule may be necessary which would extend our stay an extra week or two. He said this is normal and just wanted to prepare us. It wasn't anything that he saw today or anything he will be able to determine until our next appt on May 17th which is scheduled to be our last day of turning (lengthening). We got to hang with the Burke's as Grace had her appt today. Grace has gained her full 2 inches and her bones are healing perfectly (I'll add Kevin's update on Grace as a seperate post which will give you a clearer picture of what perfect is and hopefully what is in our near future!). The Burke's joined us for some lunch and play time before heading back home. That and the Green's leaving us was a sad ending to a perfect day.

Check out Carter applying some makeup to Madison. She's ready for the circus!

We did get to enjoy dinner out with the Benson's this evening... not sure enjoy is the proper word when you're entertaining 5 kids under 5, trying to eat and have some sort of adult conversation but fun none the less!

Day 60- Grace's return!!!

Sunday 4/28/13

Aunt Kim and Uncle John invited everyone over for a BBQ. It was great having everyone together- well almost everyone- we were missing Mom and more importantly on this trip Meme! Actually we were missing Baby John too as he came down with a stomach bug and was quarantined in the bedroom! Some special guests arrived as well which made the day perfect- Gracie was in house!

Once again, everything felt right in the world having the twins reunited. Em and Grace got to hang out, swim and play together before heading off to pick mom up at the airport!

Thank you Kevin, Mandy and Grace for stopping by. The girls love their books and Maddie especially loves her rainbow light... from Gracie!

Thanks to the Cunningham's for letting us all invade and thank you to the Quinn's and Green's for making it extra special and for entertaining the girls.

Monday, April 29, 2013

Day 59- Dad Fun Day!

Saturday 4/27/13

Craig and Leigh arrived! Craig and Chris took Dan, Uncle Mike and I out for some fishing! We had a great day on the water! Thanks guys! I'm looking forward to the next trip!

Grammie packed up the girls and we all went to Seanie's 50 lap race. He took home the 2nd place trophy! Great job buddy!

Lala took Maddie to spend the night with her and the cousins at Auntie Kim's! Craig, Leigh, Chris and his girl came over to see Em and T prior to us heading out to dinner. Grammie took the girls and I headed out with the group to meet up with Dore, Joey and Shane. It was nice to catch up with the guys and have a night out. Thank you Grammie and Lala!

Sorry for the lack of pics!

Saturday, April 27, 2013

Day 58- Bye Mom

Friday 4/26/13

We shipped Mom out to Becky and Mark's wedding! Congrats guys and sorry I missed it! The girls (Grammie too) went for a swim. I literally had to carry Teagan home- look closely at the pic below!

Special Delivery- Thanks to the Shanks family for all the cool art projects, books and gift cards. The magic paint brushes are a big hit!!! Thank you guys!

Day 57- Benson's and Baseball

Thursday 4/25/13

The Benson's arrived! Maddie and Em where so excited to have a pool date with Darby and Lizzy. After an afternoon at the pool, everyone met up at Baby John's baseball game and then the clan took over a pizza joint for some much needed dinner! Baby John played a great game but they lost a nail biter in extra innings...

Thursday, April 25, 2013

Day 56- Legoland

Wednesday 4/24/13

We picked up the Green's and ventured to Legoland today!!! A great time was had by all!

More Em Quotes:

It's making me longer and stronger. (When anybody says- oh, what happened to your leg?- which is a few times a day)

It doesn't hurt. (When anybody says how did you hurt your leg or that looks painful$

Eliza got bite by a shark. (To any new person who's interested in her Super Brace)

Day 55- Emma Quotes

Tuesday 4/23/13

I've had a special request to have Em give her thoughts on this adventure. Her words: "I want to go back to New Hampshire". So I'm not getting much feedback there! Here are some of my favorite quotes:

I want a Super Brace on my other leg like Gracie!

Why don't I have PT today? (On the weekends!)

Where's my Rootbeer? (Yes Dad is still giving her Rootbeer to take her Spicy medicine)

Let me fix my Super Brace! (She grabs my wrenches and works on her Super Brace when I'm tightening her nuts and bolts)

Let me swim to you. Back up! (When your too close to her in the pool and she wants to swim further)

I love you so much! (When she's tired and medicated)

I miss Murphy. (Whenever she see's a dog or sometimes just out of the blue)

And some of my not so favorite quotes:

Don't touch my pins! (Hence the nightly pin cleaning!)

Daddy, it hurts, it hurts, it hurts! (At 2am, when she won't take her medicine)

I'll check in with Mom and get some of her favorite and not so favorite quotes and update later.

Side Note: Maddie lost another tooth!!!

Tuesday, April 23, 2013

Day 54- The Green's are here!

Monday 4/22/13

Teagan has been running around the house saying Carter, Carter, Carter (when she's not saying Hannah, Hannah, Hannah). Em and I picked Uncle Mike, La La, Carter and Braden at the airport and La La joined us at PT. Don was off today so it wasn't one of Em's best play times (actually probably the worst). I picked Maddie up at school and she couldn't wait to get home to see the boys! All the girls were over the moon. Everyone went to the pool for a swim and then met up with Aunt Jill and Seany. Uncle Mike cooked us all dinner and all the kids played (well almost all- Brady crashed out after the pool and wasn't feeling very well). We are all looking forward to hanging out with all the cousins this week!

Special Deliveries:

Maddie wants to thank everyone for thinking of her on her birthday!!! I've missed some special deliveries which I'll try to catch up on here:

Michelle and Caleb- thank you for the Barbie and the card! Em and Maddie were talking about the sleep over before going to bed last night and how they can't wait to do it again! Em has a Caleb in PT with her so she says she has 2 Caleb's! They miss you!!!

Mema and Boppa- Maddie loved her mouse house!

Thank you Nana and Grammie Marilyn for the money!!! Oh yeah- the cards too!

Better pictures to come... but check out Uncle Mike!

Day 53- Lion Country

Sunday 4/21/13

Grammie and Grampa took us to Lion Country today! Em's favorite was the baby rhino- Anna- born last month and then feeding the Giraffe's. All the girls loved the animal show, riding the carousel and the flying Elephants. I'll let the pictures tell the story.

Monday, April 22, 2013

Day 52- Maddie's Pool Party

Saturday 4/20/13

Maddie had a perfect day for a pool party and everything went off without a hitch. Grammie and Grampa took us out to Bubba Gump's for dinner. Forest and Lt. Dan treated us all right however and we all went home full and happy.

Saturday, April 20, 2013

Day 51- Hell Week Over

Friday 4/19/13

Emma had her week 7 doctors appt with Servando- you may know him as Amanda's boyfriend. I've attached a picture with him and Em below for you. I've posted a picture of Don and Em as well just to keep you thinking. Don gave us a great report from the PT side before our appt and Servando confirmed the same on his side. We are at 33mm of lengthening with great new bone growth! Well on our way to the 50mm we are hoping for! X-ray attached.

Troy, Liz and Chase came over for a swim and dinner this afternoon. The girls couldn't get enough of him once again! Of course, the news was on all day as we waited for the final scumbag to be caught.

Please never let your thoughts and prayers rest for those that were killed or injured in the Boston Marathon bombings. Those that survived will struggle the rest of their life, one way or another, to try to make things as normal as possible again. I heard one man who had minor wounds and his friends with life threatening injuries say something that struck me which was to the point of- "we are all normal blue collar people that make a living with our hands (roofers, carpenters, etc) and my friends in the hospital are more worried about how their families are going to survive at that end of the day with the medical bills and the inability to work, than they are with their own health at this point." My heart bleeds for all that were impacted by this horrific act and just pray that they all can find the support they need to pull through this and move forward with their lives.

On a side note, I'm left seeing a bit of a bright side. I usually disassociate myself from these situations as I can't stand the media and how these types of events are covered. I can honestly say that for the first time in my life I gained a new found respect for the media, for the most part, in the way they handled this coverage. It maybe that I finally found the right channel to tune in to or that possibly the media have found their hearts after the school shooting in Newtown. Although this wasn't a story that needed to be sold, my feeling is that something has changed in the media world. I can only hope this is the case and also that I don't need to worry about it ever happening again to find out.

Lastly, it personally made me feel good seeing people help people. Whether it be civilians, medical personal, law enforcement or runners who just finished a marathon, they all took part in helping complete strangers as they struggled for their lives. I also take my hat off to all the agencies involved, as it seems from the outside looking in, that everyone came together to work as a team to complete what seemed like could have been an impossible mission of finding the responsible parties. I hope there is nothing more to this story as what doesn't kill you makes you stronger and they just made a hell of a lot of people stronger!

Friday, April 19, 2013

Day 50- Baby John Goes Deep

Thursday- 4/18/13

Mom took a well deserved girls night with the neighborhood hens. I took Em and Maddie to go see "Baby" John play baseball and Grammie took the Tornado. I really would have taken Teagan but she was still down for her nap. Anyway, John flexed a little muscle tonight and hit a home run for his cousins. I didn't want to break his heart but they could of cared less and were actually a little upset with him for losing the ball! I was happy for ya buddy! Big John, Aunt Kim, Baby John, Kara and Karlie took us all out to dinner- thank you! Also, thanks to their big cousins for entertaining through the game and dinner! They had a blast and wanted to know when the next game is!

I'm looking forward to hearing a little more about the Hen night as the girls were a little quiet today.

Day 49- Happy Birthday Madison!

Wednesday 4/17/13

Maddie turned 5 today! She is so excited to have 3 parties! Today she had a little cupcake party at school, she'shaving a pool party with her neighborhood and school friends this weekend and then Mom promised her a party when we get home. I'm quite impressed with how much Madison has grown up on this trip. I think the biggest change I've seen, aside from her height, hair length and tan is that she has definitely lost some of her shyness.

We had a nice dinner with Troy, Liz and Chase, who is just adorable! The girls couldn't get enough of the little guy. After dinner Maddie wanted to ride the carousel, the train and make her own ice cream, so that's what we did. Yes- that's Troy in the train!

Dad got a new phone today which is what I'm going to blame the delay in posts on! As Maddie says, "It wasn't Teagan's fault, Dad broke it!".

Maddie said she had a perfect day! Happy Birthday Baby!

Special Deliveries:

McClure's- check out the dresses! The girls love them!!! They needed to put them on ASAP and then wanted to sleep in them. Side note- I was ok with them sleeping in their prom dress. Thank you!

Nana, Papa Pig and Jordan- Em won't leave home without her Ariel bag. Maddie is constantly telling Teagan to leave her super cool Candyland alone and Teagan has hidden her Little People so no one can touch them. The girls talk about each of you on a daily basis! Very thoughtful- thank you and give Jordan a kiss from us all!

Uncle Dave: The girls love their Mother Goose and their vintage Dr. Suess book. Very sweet!

Tuesday, April 16, 2013

Day 48- All Good

Tuesday- 4/16/13

Em is doing well. This is the first week that we have seen a real reduction in her pain medication. This had concerned me until our last doctors appt, when we were told some are more sensitive to the lengthening process and to give her the medication as needed. The days when 5 or all 6 struts are turned are when we have been seeing more discomfort which is understandable. We are anxiously awaiting our appt 7 week appt on Friday (crazy!), to see her latest bone growth and get the most recent measurements. I'm still doing pin cleaning at night but with a less is more approach. This along with the Epsom Salt baths every other night seem to be working out. We are starting to see the tear drop scars around her pin sites which is a good thing except for her leg modeling career. The skin rips around the pin and heals on the other side, as the pins are fixed into the bone which is the visual indicator of growth. We have had the stitches on one of her port hole (site where the surgeon went in with an instrument or scope) dissolve which has healed up nicely. Only 4 more of those sites to go! So all in all, everything seems to be on track.

Day 47- What is wrong with the world?

Monday- 4/15/13- NOT FOR CHILDREN!

Our thoughts and prayers go out to all the victims, their families and to the City of Boston.

Can someone's mind be so weak to truly believe they are serving a higher power with this bullshit or that they are putting themselves in a better position when they meet their maker? Please stop reading if you feel I may offend you as I vent my frustration with this nonsense and graphically describe what I would do to this nutless prick. What a senseless act of cowardliness. I would like nothing more than to personally hunt this weak, mindless, piece of no good garbage down and bring him back to the place he hurt so many to have each hair and nail pulled ever so slowly out of his body and stoned to not quite death by each and every one of the families that he has caused pain to, then to be tar and feathered... just because... and to finally be put slowly to death by quartering. Yes, I may be sick and twisted and yes, I do believe in an eye for an eye in this case. I don't want explanations or answers from this clown as they would most likely only be programmed psycho babble from some other wacko. Some will say, its that some other wacko's fault, this guy didn't have a chance or a choice. I call bullshit on that and say start at the top of this rant- he who did this is a coward... a weak and mindless piece of cow dung that I would love to fry like a pig on an open spit or better yet like they did William Wallace which was to castrated him and then pull his intestines out and burn him while he was still alive. These medieval forms of torture don't come close to the pain he has caused and wouldn't replace any of the lives or limbs that have been lost but I would somehow feel a little bit of satisfaction knowing that he could only possibly feel sorry for all the pain he had caused during these last moments on earth.

Monday, April 15, 2013

Day 46- Water Logged

Sunday- 4/14/13

It was a scorcha today! The girls went for a walk to feed the fish with Hannah, Hannah, Hannah, Kinley and Kim. I heard Kinley went for an accidental swim and I was afraid to ask if Teagan had anything to do with it... Then the crew hit the pool for a few hours. I need to thank Kim as she is a trooper at the pool. Maddie is stuck to her like glue asking her to watch her do this and that or throw her here or there. It's not like she doesn't have two of her own to worry about... Check out the pics of Maddie diving in the pool (surrounded by her surrogate family) and Hannah and Maddie racing.

In the afternoon, we went to Abby's birthday at the beach (Jennifer Scott's little girl). Happy 5th B-day Abby! It was at a little lagoon that we've heard so much about but hadn't made it to yet. Grace, Mandy and Kevin always told us we needed to go and we finally made it! It was as great as they said it was! Em can't play in the sand with her pin sites but Dr. Paley encourages the salt water and she loved it!

We made it home for the back 9 of the Masters and a story book ending! No, the 14 year old didn't win but he was low amateur which is a feat in itself. An Aussie won for the first time ever and in a playoff at that... beating "the duck"- walks like a duck, talks like a duck, must be a duck- no that's just his nickname and very fitting at that although he's one hell of a golfer (past Masters champ and US Open winner). I guess its getting late or the fact that I had to watch this event unfold with my mom, wife and 3 kiddo's (who all pretended to know what was going on) or maybe its just that I haven't had the chance to talk golf with anyone in the past 24 hours, that I've decided to ramble on about a Duck and an Aussie in which I just wasted a minute of your life, that you will never get back and for that, I apologize. Anyway, congrats Adam Scott- you deserved it... and I was pulling for ya!