Saturday, March 30, 2013

Day 30- Graduation Block Party

Grammie brought Meme to the airport and returned before anyone was awake. Safe travels Meme.

It's over... Swim lessons that is! They graduated!

We were then invited to a block party with all the neighbors. Let me introduce the great people that have welcomed us to their neighborhood and have been very grateful sharing their toys, kids to play with, local knowledge and now their grub!

First let me explain that Amanda and the kids have had a lot more interaction with these folks than I have at this point (unfortunately) as she plays with the kids in the street or at the pool during the days as I'm locked away trying to get some work done. So this is my knowledge of who's who and a take from an outsiders view. I'm probably totally off here and have kids with the wrong family's but my best guess for now. Also a few families that I'm spacing the names on but will add them in later.

Frank- son Jake.
George and Kim- daughters Hannah and Kinley.
Jimmy and Gina- daughter Lily and son Cooper.
Scott and Heather- daughter Ava and son Ethan
Carl and Janine- daughter Jenna and son Zack

Frank is the glue to the neighborhood. If someone mentions something that he thinks is a good idea he'll run with it, laying out the game plan and making it happen. He's a great guy who's always checking in and helping out. The girls adore Jake and love getting outside to play as soon as he's out of school.

Kim and Amanda have hit it off and Maddie wouldn't have it any other way as Hannah is the most common name in our house (Where's Hannah?, call Hannah, let's go to the pool with Hannah, can Hannah sleep over?, can Hannah have dinner here tonight)- so cute and the questions keep coming! So great They play great together and we are thankful Maddie has someone to play with.

Jim and G- Thanks for putting on the spread! Great food and I learned that Jimmy wants to go PRO on the BBQ circuit! I can say that he's well on his way! Lily and Cooper are sweet. Lily is a little mother hen. She was following Teagan around with a tube of Neosporin and rubbing it on her knees each time she wiped out. Cooper and Teagan are two pea's in a pod!

As you can see by the picture, I think I've left out a family or two.

Day 29- Super Brace vs Aero Bed

Thursday 3/28/13

The kids came back alive from the pool so I'm going to say swim lessons went as well as they could today. One day left until graduation! Everyone in the house is looking forward to this as we can't listen to Maddie tell us all morning that she isn't going to swim lessons anymore.

Grammie went and picked up Meme and Karlie. Seany and Jill came down as well and we all have a nice dinner. Karlie is staying for a few days to entertain her cousins and Meme's headed home tomorrow to see Carter and Brady.

Meme started off sleeping with Em but she had a tough night so Dad took over and pushed Meme to the couch. After a number of nights of waking up the floor, I've determined Super Brace has won the battle of Aero Bed vs. Super Brace. It's been officially retired! Off to find the next victim tomorrow.

Thursday, March 28, 2013

Day 28- Swim Lesson 3

Wednesday 3/27/13

Em's doing great so let's move on to something more exciting- Swim Lessons! Wait- one quick story before we do that as I forgot to mention a good one from the other day. Em and Maddie are jamming away to tunes in the back of the shaggin wagon and then everything goes quiet. Big pause then Maddie says "She's bleeding!" and Em starts to whimper. We look back and Em has a bloody lip. We asked what happen and Em says "I smashed my face on my Super Brace"! I don't think we need to worry about the phone ringing off the hook for air band tryouts in the near future!

Back to swim lessons- I hear all the girls come back from the pool and wait for my door to fly open with the latest saga! Sure enough- Mom comes in holding Teagan and says tell daddy how you threw up at swim lessons today. T looked at me and said yup, yup shaking her head yes. Teagan did great swimming but after 60 head dunks she decided all that water belonged back in the pool. I heard Maddie did well and that she went to the park with a neighborhood friend. A little while later I hear Amanda take a phone call and run out the door. She calls me a bit later and said she was going to get Madison. She explained that Kim (Hannah's Mom- neighborhood friend) called and told her that Maddie looked a little white. She asked if she was ok and Maddie shook her head yes but looked like she had a mouthful of something. She told Maddie to sit down and when she did, the other half of the pool went all over the playground. So I guess the moral of the story is don't swim with your mouth open!

Grace and Mandy came over for a casual dinner and all the girls did some Easter arts and crafts. It was an early night which ended with a relaxing bath and some late night strut turning and pin cleaning.

Until tomorrow!

Tuesday, March 26, 2013

Day 27- Swim Lesson 2

Tuesday 3/26/13

Em had a great night. I did some late night pin cleaning which is getting harder as she's not taking as much medication so she stirs a bit more. Just a longer process at this point but I have a feeling this might be a short term solution to the inevitable blood curdling screams I'm going to have to face once the meds are done. I'm keeping my fingers crossed and praying for the best. Great day overall with Em enjoying her day at PT with Don and home for a nap. Check out her split below (Super Brace doesn't allow her to go any lower). She did ask Don if she could run and jump and he said no to both at this time- she was bummed out by that but still pushes the limit of walking really fast and hopping- telling me she's not doing anything wrong and Don won't get mad at her. Too cute but scary at the same time!

Teagan and Maddie enjoyed getting their heads dunked in the pool by the swim Nazi. Mom came home horrified once again but more for another Mom that had the lesson after who was wiping away tears for the half hour she was there just hoping her child survived. Not sure if we'll be seeing them at the pool again anytime soon! Mom said Teagan was a champ and Maddie got through it. Teagan will most likely be the fish of the family, although Em is a pretty strong swimmer for having a cinder block attached to her leg. I now do not doubt that both Maddie and Teagan will be swimming by the end of the week. I'd sign up Em for a class if I wasn't afraid this woman wouldn't just walk away saying you can keep your money when Em sank to bottom. I'm looking forward to tomorrow's report!

The family went to the Burke's this evening for a nice dinner and the kids had a great time doing arts and crafts and playing in Grace's room. The never ending battle of the sleep over and promises it will happen, continue. Thank you Mandy, Kevin and Grace for a great evening.

Day 26- Swim lessons begin

Monday- 3/25/13
Maddie's off from school this week and her and Teagan started swim lessons! From what I understand (I'm not allowed at the pool during lessons) it's a one of a kind, sink or swim, survival of the child, type of lessons. The teacher is no joke and you do not disobey her rules (too many to list). The kids came back alive and still half smiling so all went well! Mom was completely horrified but seemed to keep it together (I think Mom's a little afraid of her too)! We'll see what tomorrow hold...

On the Emma front, all is good! Great day at PT with Don and home for a nap. Em's outfit for PT pictured below! Dad got some work done and chased the little white ball around for a bit before sunset. Life is good.

Day 25-Relaxing

Sunday- 3/24/13

I'm starting to let you down, hence now leading with the date. The good thing is the days are starting to get a little more routine and we have SOMEWHAT of a schedule of who's doing what in place. Em's slowly coming off the pain meds and things seem to be going in the right direction. We still have the long nights with Em in pain but all in all that seems to be getting shorter and shorter.

Sunday was a relaxing day with the girls and Grammie hitting the pool at around 11:30 after opening some special deliveries (see below)! They hung out there until almost 4pm, having a lot of fun in the sun. Thanks to Derek and Danielle for entertaining.

The Burke's arrived around 3, which gave me some time to catch up with them on the important things, discussing sleepless nights, dealing with insurance companies, challenges of pin cleaning, bathes, swimming, massages, stretching, getting fitted for shoe lifts and such. Nothing more than invaluable real life knowledge in which we are so appreciative of and luck to have found such wonderful people willing to share their experiences. Derek and Danielle stayed and played some more and a good time had by all. The girls had a blast hanging out once again. Em is going to miss her new BFF when it's time for the Burke's to move on to their next phase of this process which is returning home to heal while continuing PT and going for X-Rays until it is time to return and have Grace's fixator removed (Maddie too!!!)

Special Deliveries: Matt & Teresa- Thank you for personalized beach towel, everyone loves them (including Mom and Dad)! Special thanks to Kerri and Chad for watching the house, handling the mail, all the special deliveries and everything else you've done for us!

Last picture is the clan at the race track.
Left to right
Front row: Jill, Meme, Emma, Teagan, Madison, Kim, Karoline, Grammie
Back row: Mom (hiding), Gary, Seany, Little John, Andrea, Little J's Girlfriend, George, Sean, Big John
Missing: Karlie, Lori, Mike, Carter and Braden (Although Em called Jill by Lori's name all day so you were with us La La)

Saturday, March 23, 2013

Day 24- Hot day at the track

The Riso's are on the road- safe travels and we miss you already! Meme and Em had a good night sleep. Thanks letting me try out a real bed!!! Mom and Dad were a little slow this morning but got it together, packed up and headed to meet up with the cousins to watch Seany race- last years champ!!! After watching him race, I want to do it! Em and Teagan couldn't get close enough to the star of the day.

We all went back to my cousin Kim's house for a BBQ and the girls enjoyed the pool and quality time with their cousins.

Thank you John and Kim for the hospitality and Meme for funding the dinner with her big 50/50 raffle winnings from the race (yes we know Kim- you bought the tickets!). The girls crashed on the ride home and an easy transfer to bed!

Special delivery- Thank you to the Towsley's, our west coast connection! The girls colored, finger painted and did Barbie projects all morning. T enjoyed her goldfish! Thank you to Nana and Gramp for the package as well. Maddie loves playing her princess game (when Teagan's not around) and Em is working on the right colors for her bear.

More pictures to come!

Day 23- Adult Night

Em had an ok day. We have start turning a few struts throughout the day. It went ok... She had a tough pain spell after nap which we are usually dealing with at 2 or 3 in the morning. We got through it and all was good.

Em had PT with Fran today. Mom brought her and said Em had a rough day. Fran pushed her pretty hard and she just wanted Mommy and Mommy was dismissed from PT so Em could focus. Mom said she wasn't in pain but just wasn't much up for playtime today.

After PT, Em, Maddie, Mom and the Riso's went to the pool, then off to see horses at the hospital. Meme came and spent the day with Teagan. Teagan had a great day having a friend to herself to keep her busy! I'll let the pictures tell the story.

Derek and Danielle came over and spent a little time with the girls and Mom and I snuck out the back with them to go enjoy a night on the town. We went to a great restaurant in downtown Palm Beach (we saw the pig on a leash again!). The food, company and DRINKS were all what the doctor ordered! We stopped by a local adult establishment for a night cap and returned home to a sleeping house. Grammie, Meme and the Riso's took charge of the kiddo's and all went well.

Special delivery- Thank you Jeff and CA- hello kitty is just about gone already!

Friday, March 22, 2013

Emma's Fundraiser Update - Thank you!

Sorry Eric, me again crashing the blog...

We have raised $14,000!! 
The generous response to Emma's Fundraiser Thursday and even before was overwhelming. I have to admit I didn't really know what to expect when I began the planning for Emma's Fundraiser. Thanks to everyone who pitched in to pull everything together, to those people who made generous donations for the auction, to those who bought and sold raffle tickets, and finally to those of you who made the effort to come, bring food or wine or to donate in another way. Thank you! We are touched and truly grateful for all you have done to enable Emma to make her leg long and strong again. These funds will go directly to covering Emma's physical therapy costs which are not covered by insurance.

Thank you for making a big difference in a little girl's life!! It is 3 weeks into Emma's journey and she has already gained almost 1cm in length. Not without a few tears but Emma is brave and determined.

My sincerest thanks,


Congratulations to the Raffle Winners!
3 IPOD's Blue, Yellow & Green
1. AC Morange  2. M VanDerVoort  3. Anik

Day 22- 3 New Struts

Em had a tough night with pain but today was great. Em and I went early to her appt to have 3 of her struts changed out for longer ones. We will need to change out the other 3 struts in a week or so. That will be the last of the strut changes. Emma was nervous as we had to go into the same room where she had her first pin cleaning. We met with Mark and he made her feel comfortable and did his thing. It took all of 5 minutes and not even a whimper out of Em. Thank you Mark!!!

Then it was off to PlayTime with Don. A great day as usual!!! It's simply amazing to watch Don's creative mind at work to make it fun for her and she truly enjoys herself while working so hard for him. She gives him more hugs in a session than I get all day! I've been through PT myself and know how much it hurts. It's worse than going to the dentist every day which is one reason why I can't stop praising this man. From the beginning, PT was what I dreaded the most about this trip for Emma. I figured it would be a battle each and every day and I'm so happy I was wrong! Thank you Don!

All the girls and the Riso's went to the pool in the afternoon and had a blast. Teagan decided to jump in to see how the bottom felt for a few seconds before Mom brought her up for air. She held her breath the whole time and not a tear when she came up. She's my little daredevil! Next week, Maddie and Teagan have a week worth of swim lessons in which we are guaranteed they will both be able to swim when the week is out. I don't have any worries with Teagan but my princess Maddie might be a little challenging as she not a big fan of the underwater world.

Thank you to the Riso's once again as dinner was prepared as usual! So nice to have one less thing to worry about every day... I'm dreading them leaving! Thank you to Grammie for getting the chores done around the house and once again for washing the floors!

On a side note, Em got so many packages in the beginning that we stock piled them and use them for distractions when she has tough moments. I apologize for not letting you know this in advance and will post accordingly as she opens them. Also, I'm not always there when she opens them and most likely don't give a very good description of what was sent or the appreciation that you deserve, so again I apologize! I say this as I was giving the wife some static when she came back with overloaded minivan from a trip to her favorite grocery store, along with a couple of bottles of Skinny Girl on the counter and some more toys I hadn't seen. She said they were all gifts for Em!!! So thank you again to the McClure's and I can now ween Em off her pain med with Skinny Girl!

Thursday, March 21, 2013

Day 21- 1st Appt

Maddie had a great day at school. She didn't want to come home! Em had a great day at PT with Mima and Mom. Grammie, Boppa and Aimee had their hands full with Teagan. She's a wild one! Grace and Kevin came over for lunch and a swim with all the girls and Riso's. I swung by and snatch up Em and Mom and headed to our first appt (3 weeks after surgery, 2 weeks after struts started to be turned). We will have an appt every two weeks from here on out.

We got to the appt and Em had 2 X-rays taken and then off to see the PA- John. He's been there from the beginning with us and always been very informative and helpful- today was no different! Em has a little bit of a phobia when it comes to anyone in the Paley building at this point as she thinks everyone is going to be "cleaning her pins" and that is only for her and I to do. John made her feel comfortable and then went through the X-rays with us, took the time to answer our questions and give us feedback. Em is looking good. We are 1/5 of the way to goal without any concerns at this point. I've attached one picture which is of two different X-rays. On the left is the x-ray from today and on the right is the X-ray from the day of surgery. We have almost lengthened 1cm (9.3mm) to date, only 4 more to go! Remember, we are lengthening the tibia and the fibular is along for the ride, which is at 8.5 mm. Tough to see with the fixator in the way but on todays xray the tibia is on the left and fibular is on the right. In the X-ray from surgery, the fibular is hidden by the tibia. All looks good! We relaxed this evening with the Riso's and Burke's and enjoyed some burgers, beer and wine. Thank you Boppa for manning the grill once again!

We have some special deliveries that haven't been opened but will report back once Em finds them!

Tuesday, March 19, 2013

Day 20- A Night Out

Em had another great day at PT with Grammie and Maddie. I talked to Don about adding some height to her shoe (this is the shoe on the foot WITHOUT the super brace). Crazy as we hadn't ever thought about needing to do anything to that shoe. Don says in 10-14 days is when we'll have to do that. He did state if she wasn't doing everything so well that he would consider it but with everything going perfectly, we could wait and do it once rather than having to keep going back. Take a look at Grace's very cool new shoe (Em's will be just like this- just on the other foot)!

We met up at Aunt Meg and Uncle Jim's house with the Riso bunch and cousin Austin. They brought us out to a great dinner in downtown Palm Beach. The first highlight for the girls was walking around with Grammie waiting for dinner and seeing Miss Piggy on the street. You see, we were at a nice pizzeria in a courtyard where people brought their dogs with them in their little baskets and this one woman had a little pig on the end of her leash. Teagan was so excited she couldn't wait to tell the table what she found! Of course, Amanda loved the people watching and I enjoyed no one breaking anything in Aunt Meg's home (that I know of but she's so sweet she wouldn't tell me anyway). Thank to Austin for entertaining the girls- all 3 were snuggling up to him before the night was out. Lastly, thank you to Jim and Meg for treating this circus to a lovely dinner!

I got Em in the bath, did some pin cleaning and now snuggled in bed with her waiting to turn some struts. Tomorrow is report card day! Big first appt at 2 PM to get X-rays and see the progression. We will also be changing out strut #'s: 4,5 and 6 this week. They are just about maxed out, so they will be replaced with longer ones.

Day 19- All good

Everyone loaded up in the loser cruiser this morning and brought Maddie to her first day of school. Maddie didn't want Mom to leave at first but settled in and all was good. The big excitement for the morning was Dad getting pulled over by the police man doing 37 in a 25. I honestly had no idea what the speed limit was or that he was even standing behind a tree with a radar gun until he jumped out in the middle of the road. Of course I didn't have my drivers license but explained I was lost and babbled a number of other crazy things and he was more than happy to tell me have a nice day.

Great day at PT with a stellar report from Don! Then Kevin, Mandy and Grace came over for nice dinner prepared by the Riso clan. Grace almost had her first sleep over but Mandy wasn't quite ready to cut the cord. The girls just couldn't fall asleep fast enough- maybe next time. I can't blame her after spending the amount of time that she has with this group! She knows her little angel will be safe if she's sleeping when she leaves and gets back in the morning before Grace gets up!!! Just kidding with ya Mandy!

Thank you Chrissy and Violet for the special delivery! Em loves her doll and all it's clothes!

Sunday, March 17, 2013

Day 18- Happy St. Paddy's Day

We had the usual night of turning struts and the half hour of coaxing Em into taking her medicine and another 15-20 minutes of waiting for it to kick in. This is usually the worst 1/2 hour to an hour of the day and its pretty bad. Mostly, I think, because she is so tired and out of it but we get through it.

The girls woke up to the leprochan making a mess of the house with his lucky charms and turning the milk and toilet bowl green. At least he left a few special treats. I'm sure Grammie would have strangled that little green bastard if she could have caught him.

So after a little breakfast snack we left to meet up with Uncle Bruce and Barbara for brunch at the Hilton. Then to their pool for some swimming. The girls had a blast. Maddie could touch in the shallow end and was able to swim without her life jacket. Teagan was fearless as usual, jumping off the stairs and letting herself float around giving everyone a heart attack. They both are signed up for swim lessons next week in which the instructor (from N. Conway NH) states that both girls will be swimming by the end of the 5 sessions which are 15 minutes each and she doesn't get in the pool. Em loved splashing around and doing some pool therapy. We said our goodbyes and the girls crashed on the way home. Dad, Em and Teagan took a good afternoon nap while the Riso's cooked a delicious corn beef, cabbage, potato's, carrots and soda bread dinner with strawberry shortcake for dessert. Yum!

I'm not sure if I mentioned that when Meme was here on Friday, Em's toe plate (the pink plate with Velcro straps that keep her toes from curling down during the turning process) went missing. The house was torn apart looking for this thing numerous times without any luck. Well with the luck of the leprochan, Grammie found it today! It was hiding in Em's memory box that Craig and Leigh gave to her. Em was showing Maddie all the things that she has been keeping for treasures on this adventure and tried to make her toe plate a memory as well!

Day 17- Irish Festival

The girls opened two special delivery's this morning. They played with puzzles, games, painted their bobble heads and got all charged up on some of Dad's favorite candy. Maddie decided to hit the bottle a little early. Thank you McClure's and Malila's!
Next, we all packed up and met up with Kevin, Mandy and Grace and made our way to the Irish Festival in Stuart. It was fun filled with face painting, bouncy houses and plenty of dancing! We enjoyed the Irish Family Band from NY City called MacTalla Mor. They were incredible. Everyone crashed on the way home and straight to bed.

Grammie was busy relaxing all day- doing laundry, washing floors, cleaning bathrooms, bedrooms and kitchen as well as some ironing. You know, just your regular relaxing Saturday! I swear as much as this is my therapy, cleaning is hers but I should know that by now.

Side note- I love little people and old people due to the fact that they are honest and these are the ones who ask direct questions about Em's fixator to us or to Em herself. Em always explains to whoever asks that its her Super Brace (she has got that term from Grace) and it's making her leg long and strong. Maddie has been asking her lately if it hurt when the doctors put it on and Em just says nope. Maddie asks if it hurt after they put it on and she says just the blood (meaning some of the pin sites had blood around them as they healed). My point is that everyone else besides the young and old just stare, most likely judge and come up with their own reasoning. I could care less what people think but it may be time for some t-shirts to be made so people get the point. I also get the fact that a fixator isn't something that one see's every day and its intriguing. Some thoughts below for t-shirts (I have many others which are not appropriate so I'll leave them in my head for now)- feel free to comment with yours- inappropriate or not as I think I'll be wearing the most inappropriate one that someone comes up with just for shits and giggles:
"Didn't your parents ever tell you that it's rude to stare."
"Just ask, I'll tell you"
"It looks to me like you enjoy this thing more than I do. You want it?"
"If you spent as much time reading as you have looking at my leg, you'd know what's up!"

Saturday, March 16, 2013


Where do we start??? I guess its only appropriate to begin with the one who brought us all together and makes us stronger each and every day. Emma, we love you! Next is Trina and the only other name I'm going to mention as I can't re-write the phone book tonight! Trina- you're are simply amazing. You have been there for all of us since the day Em was born with more love and support than anyone could possibly ask for. Thank you for everything. Lastly, to everyone else that has read the blog, called, texted, emailed, instant messages, tweeted, Facebook'd, mailed or prayed for Emma- Thank you!

We have amazing family and friends out there and anyone that knows me as a friend has probably heard me say that friends are family in my book. We have had people reach out to us, in one way or another, from all over the world, literally! Those poor French folks can't understand a lick of my dilact from what I'm told but we appreciate them trying! I haven't tried to put a post into a French translation program yet but I think it's safe to say that it would be lost in translation!

Speaking of the French Connection, I need to give a little more love to my sister in law, Trina. I need to explain that Trina has always been there for me in any situation. She listens to my hopes, dreams and fears without judging me and will always provide me with her most honest feedback. We don't see eye to eye on everything but that never seems to get in the way of what matters most- family!

So when Trina first mentioned starting a blog to keep everyone up to date, I honestly had no idea what that meant but I was on board. Trina called and emailed Amanda and I with all these idea's for the blog and Facebook and yada yada... and so you know I'm the furthest thing from a social media guy. I only started a Facebook acct when Em was born because they had a fibular hemimelia group. I have not accepted even one "friend" request as I feel I can piss enough people off in the real world, so I'd better stay away from outer space! Although, I soon found out that not accepting "friend requests" doesn't make people happy either! Anyway, Trina is an amazing artist and owns a Graphic Design business so when she started sharing all her thoughts and ideas, we naturally gave her the green light to do what she thought was best for Emma.

All that being said, at the beginning of this adventure, we had so much love and support from so many people that just wanted to help and didn't know how. To be honest, there have been so many unknowns over the past three years that it has been very hard to determine the financial impact this journey would have on us and that still stands today. However, we have planned and budgeted for this. The largest unknown still is the Physical Therapy. I've spoken to everyone and anyone to get answers- the hospital, insurance companies, case managers, other families and everyone in between and have determined that during this phase we will be looking at over 150 sessions in which 25 of these are covered by insurance. It's then a fight with everyone involved to see if our insurance will extend the PT benefit (big long process that I won't get into but we are prepared for the fight- I think). At $225 a session, the out of pocket expense will add up quickly. I only tell you this as it was the above conversation that I had with Trina that got her creative juices flowing. She said, So many people want to help Emma. Let me do a silent auction as a Fund Raiser for her PT sessions and we will put the money into a fund for Emma" - hence the "Emma Fund". Amanda and I agree'd to that as Trina throws a good party, it would be fun event and there would be no pressure. Then Trina was designing the blog and said let's do a donation button to support the cause as it's a quick and easy way for people to support Em if that's the way they choose. So I guess that's the point, Amanda and I have felt uneasy about this "help" from the beginning. We are very grateful and appreciate all the emotional and financial support that we have received and wanted to make people aware that donations that are made go into the Emma Fund and will be used to pay for her therapy. Any leftover money will be held in her Fund for the next phase of this journey which will be Em's decision.

In closing, Trina has also designed and paid for Emma Fund cards, designed the blog, connected it with Facebook, handled all the maintenance on the the site and a lot more. You see, my only involvement with all this is saying yes to whatever she says (happy wife = happy life...sister in law in this case) and trying to document the day to day events by use of my cell phone on a blog app. That is my disclaimer for the typo's- as the iPhone auto correct is similar to the French translator- it just doesn't get what I'm trying to say most of the time and I'm too lazy to proof read! So Trina, we thank you for putting forth the effort, time, money and everything else you have done. And to everyone else that have sent gifts (we try to recognize them in the blog but do not give the true appreciation they deserve), the comments on the blog (we do read them), all messages (however they are sent), the love, thoughts and prayers, along with the very generous donations as all of this is what gets us through each day and makes Em push forward to be long and strong!

Amanda & I are so grateful for all the wonderful people in our lives and can not thank you enough for all that you have done!
Murphy too! (we miss you buddy!)

Friday, March 15, 2013

Day 16- What's a Strut?

Boppa and Maddie joined Em and I at PT today. It was Pajama day! Emma had Fran today- she is The Director and a great woman. She had Em walking on the treadmill- frontwards, backwards and side steps and also doing leg presses. Nice work Em!
We have our first Dr. Appt scheduled for Wednesday of next week which I'm excited for. They will take X-rays and determine how everything is going. I'm putting together an informational post that includes my notes and a better understanding of everything that is going on but let me explain the lengthening process and give a little history to help answer some questions or confuse you that much more.
Em's fibular and tibia are estimated to be a total of 10 cm shorter in her right leg at maturity (this equals 4 inches of actual height). This lengthening is to make up half of that discrepancy (5 cm which is the max for a Paley lengthening). This will get her 2 inches of length in her right leg to make both legs equal at this time. The remaining 5cm discrepancy (or 2 inches- confusing I know) will happen over the next 12 years- meaning when she is fully developed (age 15ish) she will again be 2 inches shorter on the right side. This means another surgery will need to take place at around 10-12 years old. There are a few different options at that point which I won't get into now but I can say it most likely will not be with a fixator.
I've had a number of questions in regards to the struts, turning process and schedule. To start, the surgery consisted of the doctors breaking both her tibia and fibular. Then a pin was inserted through her leg connecting both bones and out the other side of her leg. That pin is then attached to both sides of the fixator. This was done on the top and bottom of her leg. A pin was also inserted between her toes and out her heel, as well as through just below her ankle and out the other side- both being attached to the fixator. Those pins are to hold the foot in a 90 degree position for her benefit as when the lengthening happens the foot is going to want to point down as all the muscles, tendons, etc... are stretched by physical therapy. Then come the screws which were placed into the tibia and attached to the fixator above (3 screws) and below (2 screws) the break. The 6 struts are attached to the fixator and are what do the actual lengthening. I've attached a picture of strut #2 (you can also see strut #1 and #3 and one of the top screws as well as two of the bottom screws that go into her tibia- these have the orange caps). There is a dial at the top of the strut, just above the number, which has an arrow on it and that is what is turned until the silver pin in the strut reaches the desired number. The turns are done by following a schedule (1st page of schedule attached), to lengthen her leg. Each day a strut is turned, we are lengthening 1mm. These struts will need to be changed out for longer ones during this lengthening process (anytime during the shaded boxes within the schedule). The lengthening process is for a total of 72 days. After that, we return home for the healing process with continued PT for roughly another 72 days. Then back down here to have the fixator removed and a cast or splint put on for another 2-4 weeks. Now that I've completely confused you, I'm off to turn some struts.
Update- great night. Kevin, Mandy and Grace came over for dinner with the Riso's and Boppa handled the grill. Good grub and a few beers to get us warmed up for the Irish festival tomorrow!

Thursday, March 14, 2013

Day 15- Day with the Seamstress

Meme arrived for breakfast! She came with some HOT shorts for Em! I'm not sure if I've explained but Meme has redesigned all Em's clothes. I know first hand that it's a daunting task and not easy as I did adjust a pair of her PJ pants in the hospital but not anywhere close to Em's standards. You may have noticed that her pants are now shorts on one side, which have either Velcro or snaps up the side to allow them to be worn without having to stretch them over the fixator, which is virtually impossible. Check out her new wardrobe. Thank you Meme!!!
Meme and Em went to PT and played with Don- another great report and a day of cruising around on both feet. Em, Meme and I went to lunch- Meme and I ate while Em watched the fish in the big salt water tank (Meme did buy her lunch but a bite or two was all she got in before deciding she was ready for a nap).
After her nap, Em went to the playground and then opened a special delivery from Michelle and Caleb! Em shared all her stickers with her sisters! Thank you and Em said she really misses you guys! The band aide on Em's head is from Teagan flinging a wooden puzzle piece at her- more just for decoration now!
The Riso's were shopping all day and then made dinner (Boopa cooking again!). Meme spent the night with Em and her animals!!!

FYI- take a look below at just some of the little bastards that keep me up at night. I swear I'm living in a Toy Story movie! Also need to share Teagan's progression with potty training!

Day 14 PM- Fun Day

Mom, Maddie, Em, Mandy and Grace went to a science center and had a blast! Amazing to see the pictures of Em and Grace walking around, on the swings, climbing the stairs, going down the slide, etc...
They returned to have taco night at our place and Dad was late with returning with groceries and to top it off only got the taco shells instead of the kit! Go figure. We made do and it all worked out. Then the kids had a dance party and off to a bath and pin cleaning! I died Em's hair green and taught her some Karate Kid moves (see pic). Just kidding with the hair- we actually received a special package from the Benson's! The girls thank you for all the fun stuff and Dad thanks you for the world famous chocolate chip cookies!!! Tough night for controlling the pain but think it was due to being over tired, having a big day and the turning of all the struts. We survived and ready for Meme to come spend the day!

Emma's Fundraiser Invite

Sorry to crash the blog here Eric but I just wanted to post this for anyone who is in the New York area tomorrow. Now back to you...

Wednesday, March 13, 2013

Day 14- Sleeping well!

All went well last night with Em. She is needing less and less of her pain med and woke up telling me she wanted to watch a movie. I said great, which one? She said, I'll pick and up she got, picked up the movies, brought them to me, laid down, picked out the movie, got up, walked back to the tv, put it in, walked back, laid down, got up, walked around the living room looking for the remote, climbed up on the couch, got it, climbed back down to the floor and walked back to lay down with me. I know this doesn't sound like much but have you seen that thing on her leg??? We snuggled up and watched a little Lion King while waiting for the rest of the monkeys to awake. Em and I sleep on the aerobed in the living room with every imaginable stuffed animal you can think of along with her favorite blankets, pillows, random toys, puzzles, books, crayons, markers and a leftover potato chip or two. I know she is doing better as last night she was her usually self sleeping across the bed, then upside down and back on top of me. I just lay awake smiling knowing that my little girl is back on track even with Teddy Ruskin biting my neck, hello kitty lodged in my back, Winnie the Pooh trying to find some honey in a place he doesn't belong and Dora yapping with Diego all night. This isn't complaining as I'd wake up with a sore neck and kinked back the rest of my life if it took just a little bit of pain away from any of my little girls. Life is good!

Tuesday, March 12, 2013

Day 13- Walk A Holic

I didn't expect today to go very well (in my head), as yesterday every strut was turned and for whatever reason (maybe that I'm continuously breaking her leg) the next day has been a sore one.
To my delight, she woke up this morning and was walking all over the place. We went to PT and she again walked all over the place. She loved seeing Don today as she got to play baseball, dress up, ride a rubber ball like a pony while playing catch with a ballon, fly on a rubber ball like superwoman (even upside down) as well as some tickle time with the stimulator and stretching. Best part was she got to show off for Grammie and her big sister!
After PT, Mom, Maddie, Em, Teagan and The Riso Gang loaded up and went to the aquarium. From what I hear she was walking there quite a bit as well. They couldn't wait to tell me how the shark bit the turtle when they got back! Grammie got her nails done, Dad got some work done and all was good in the hood!
They played outside for awhile with the neighborhood kids- Em walking around and even rode her scooter a bit.
Boppa manned the grill for dinner and the kids had a pizza party in the backyard with some friends they made across the street.
Don gave her a great report on her progression which made me happy. To me, today was a turning point as there weren't a lot of whimpers of pain or asking to be picked up after every few steps. We'll see what tomorrow holds... Meme- if you are out there somewhere you better be showing up soon- Em's been looking for you the past 2 days. I also need a seamstress photo to post! Everyone's now asleep and I'm going to turn some struts! Yippee...