Monday, December 9, 2013

BYE BYE SUPER BRACE

All good in the hood!  Em's doing great and loving her pink cast!

MISSING SOMETHING!

EM'S BACK!

First let me apologize for the lack of updates since we returned home!  Amanda's done such a great job with the Facebook updates, I really didn't see the need to continue on with this. Trina on the other hand thought much differently hitting me with a few of the following quotes:

You need to do an update!
You have left everyone hanging!
People are wondering what's going on!

As Trina now knows, the more you want the less you get with me! So if you need to place blame, Trina can handle it! 

Anyway, we are in inpatiently waiting for Em to come out of surgery and be Super Brace free!  Em has gone back and forth with not wanting her Super Brace removed and being excited about it.  Her requests were pretty simple- a pink cast and Rootbeer- I think we can handle that!

More to come!!!

Wednesday, September 11, 2013

Emma Started School Today!

Emma had a great summer full of fun, swimming at the pool, catching frogs in the pond, fishing at the lake with her cousins to name just a few things in her busy social calendar. Bella the Lab puppy was welcomed into the family. A small incident involving a hula hoop and a sibling left her with a few stitches in her forehead, but otherwise a great summer!







Madison had a successful start in Kindergarten last week.

The big news is that Emma started school today with her super brace on. She was so excited to go and a little less excited for Dad to leave but a successful day all in all. She had no problem explaining to the kids why she has her super brace and that it is making her leg longer and stronger.

A quick update on that:

The bone is healing but the progress is slower than we had hoped. Dr. Paley recommended "compressing" which means backing off the struts to relieve some of the tension in the frame to accelerate the regeneration of the bone. This was scheduled to be a 5 day process in which we would then add a 7th strut to help stabilize the frame. 

After 1 day of following the compression schedule, Emma experienced unbearable pain in which it was determined that one her pin placements wasn't going to allow for us to continue with this process. 

Emma is doing well and feeling great. We are optimistic that a little more time will be all that is needed for the bone to heal and have the fixator removed.  We have our next x-ray scheduled for 9/15 in which we are hoping will result in scheduling removal for sometime around 10/15.  Keep your fingers crossed and Emma keep drinking your milk!!

Sunday, July 14, 2013

Grace (NOT EMMA) is Super Brace Free

7/9/13

So I've been told I need to clarify something!!! Emma is still in her Super Brace. Grace (her BFF or twin sister as Em called her this morning) had her Super Brace removed yesterday and is doing great!!! Grace has been Em's pioneer through all this and is a month and a half ahead of Em in her journey. One reason I update on her process is that I love her like my own and the other is so we can look ahead to what the future holds.

Grace is in a full leg cast and is weight bearing! I just received a little video of her walking with her walker!!! Go Gracie Go! She's expected to be in the cast for a month and then begin PT.  Picture below of Grace and her newly decorated (all by herself) Super Cast! So Cute!!!


Tuesday, July 9, 2013

Grace Gets Her Super Brace Off

Monday 7/8/13
I know its been awhile and apologize for that but wanted to let everyone know that Grace is getting her Super Brace removed as I type this.  We are so excited for the Burke's!!!

Em's doing great.  We've had her first X-ray and all was good.  Second X-ray will be on July 17 and Em's removal will be scheduled around the week of Aug. 17th if all goes as planned.  


We are currently just enjoying a little PT!!!


Sunday, May 26, 2013

Day 81- On The Road

Sunday 5/19/13

It was a slow morning at Grammie's. The girls played in the pool and on Grampa's tractors while we did some last minute organizing.  We finally said our goodbye's to Grammie and Grampa around 2pm and headed North to Jacksonville to see the Burke's! 

We arrived at Gracie's place at 4:30 and were received with open arms!  The girls headed right for Grace's room to play!  
Mandy made taco's and we enjoyed catching up.  After dinner, we gave Em a bath before we packed up to head for NH.  As we were loading up, Kevin arrived from spending the weekend with Sydney who took 5th place in her gymnastic meet- congrats Syd!!!  
It was nice to catch up with Kevin for a few but we were anxious to get on the road so it was short and sweet.  We headed out of Jacksonville and pulled into Auntie Trina's in Mamaroneck, NY, Monday afternoon.  We were welcomed by Arthur and Murphy with open arms and paws! Trina made us dinner and I took Teagan and crashed for the night!







Monday, May 20, 2013

Day 80- Girls=Seaworld and Dad=Packing

Saturday 5/20/13

Mima and Boppa came over for breakfast and helped with getting Mom and the girls out of the house so I could start packing and cleaning.  They all departed for Seaworld somewhere between 10:30 and 11:00.  

I ran around town doing the fun stuff like returning cable boxes (2 hour ordeal), closing out accts, gathering supplies and back to the hoise around 2pm to get to work.  I packed the house up and out, loaded it into the trailer, cleaned and put it back together the way it was when we arrived by 1am and was able to stop by Kim's and give her everything and anything we had laying around. Bless your heart!  Hooked up the trailer to Grampa Sid's truck and away I drove.  

The wife did call at 6:30 pm with an update on the day at the whale park (it wasn't too crowded, it was hot, Mima and Boppa are as wiped out as the kiddo's and everyone had a blast).  She proceeded to call every hour or two asking me for an update or to tell me how much she loved me up until 3am when I pulled into Grammie's. I was out like a light just after the cuckoo clock struck 4am.





Friday, May 17, 2013

Day 79- Yahoo!!!!!! DETAILS!!!!

Friday 5/17/13

Grampa Sid came down this morning to help pack up if we got good news. Mima and Boppa came over to help out with Maddie and Teagan while Mom and I went to PT and our anticipated final doctors appt.  I dropped Mom and Em off and they got Em's pictures taken and then went to PT, as I dropped off a key to our house with realtor and then back to catch up with them at PT.



Em was excited but sad to say goodbye to Don, Laura and Carolina.  She gave Don a card with some pictures and a little gift. Em received a t-shirt that says "I survived ...Paley Rehab!"  Hugs, kisses and c-ya soons and off to our appt!  

We caught up with Caroline and Jennifer (both great woman and just two of the many who run Dr. Paley's show).  Caroline gave us the inside scoop on her planning of the big Paley Foundation event that will be held in December at Mar-A-Lago (Trump's place) and then a party at Dr. Paley's house. With Em being the poster child for the event, we got the invite!  Dr. Paley walked in as we were discussing this and Caroline told him she thought she should reach out to MJ, as he has ties within the community and Paley said, give him a call... They were talking about Micheal Jordan (Air Jordan, His Airness, #23...), this place never seems to stop amazing me!  I gotta give Mr. Trump a call and see if he can pull some strings at Trump National (he should know someone!) and set up a tee time for himself, MJ, ME (Eric OBrien) and Phil Mickelson (or anyone else those 2 would like to play with would be fine by me).  OK- my pipe dream is over but I'm just saying- I could humor these boys for 4 hours!  Anyway, back to the appt... Dr. Paley chats it up and Em gives him a collage of her journey.

First thing he said was, "What was I thinking with that facial hair? My wife made me do it".  That made me laugh... needless to say he complimented it and asked Caroline to hang it in the hall for all to see. Then he sat down, looked at the X-rays, did his measurements and turned around and smiled saying we've exceeded our goal of 5cm!  The only issue he had was that Em's right knee MAY be what's considered a little "knocked knee" or turned in.  He explained that it may just be the x-ray but regardless it's nothing to be concerned about.  He will take a look at it when we have the fixator (Super Brace) removed and if the knee is turned in, he will insert an "8 plate" at that time which is inserted into the knee for about a year and then removed which will correct it.  I remember Kevin mentioning Grace having this done so I relied on him to educate me once again. He explained the process and that Grace actually has two- 1 in her ankle and 1 in her knee and there is nothing to be concerned about so therefore I'm not (see Gracie's x-ray of her 8 plate in her knee). 

Thank you Burke's once again for setting our minds at ease and being our full back.  We'll take the lead in the next one!

So I asked Dr. Paley the timeline from here which goes something like this:
Tape up all the Struts as turning is complete
Go home with the Super Brace on and do PT until removed
June 17th have X-ray done and email to Dr. Paley
July 17th have X-ray done and email to Dr. Paley
Prior to Aug 1st return to have fixator removed and 8 plate insertrd (if necessary) which will be done at the same time and have a cast put on 
Prior to Sept 1st return to have cast removed (possibly have removed in NH and email X-ray's
Sept (after cast removal) until necessary continue PT
First week of December return for follow up (Foundation Event and Party as well)
July 2014 return for follow up and have 8 plate removed 
Yearly follow up until next lengthening which is estimated to be 7 years from now.

Once again, hugs, kisses and c-ya soons to all and off to tell everyone the good news- of course, the Burke's were the first to know with virtual (text) high fives, hugs and kisses going on!  Back at the home front, we decided to relieve Grammie of her 77 day stay of being a full time maid, butler, chauffeur, nanny, mom or just "Gammy" as Teagan would say- to name a few.  Thank you Mom, Mom-In-Law and Gammy for everything you have done for us as we couldn't have done it without you!!!  Oh yeah and Nurse Katie asked Em today (who is either a blog reader or listens to Em's Grammie stories) to ask Grammie if she could have Grammie as hers too... Em said NO.

Finally to wrap up day, the girls, Mima and Boppa went for a swim and hung out with Kim, Kinley and ...you guessed it- Hannah, Hannah, Hannah!  They all came back for dinner and the girls were destined to get their sleep over. All went perfectly!!!

(Sorry for the horrible picture but best I could get in the dark!)

Day 77- Frank's House

Wednesday 5/15/13

Frank and Jake hosted a neighborhood party tonight! I walked into a livingroom full of girls and Jake and a kitchen full of women and Frank... I think I ruined both of their nights! Then George and Scott showed up so I didn't feel so bad. Frank made great steaks and chicken on the grill and everyone else complimented with some side dishes. Great grub guys- Thank you!!!

Story time: After dinner the kids were ready to play in the street. This is a quiet neighborhood where everyone drives slow as most people have kids or are old, so usually nothing to worry about. Unless a cat jumps off the roof and onto your windshield and you freak out and run into your own garage... or ... Your sitting in your livingroom on a quiet Sunday afternoon watching a little tv and taking a nap only to be shaken to the floor from someone driving through the middle of a traffic circle and into the front of your house! Yes, both have happened in this time that we have been here and I won't sell anyone out but we obviously need an enforcer. Naturally, Frank has taken on the role as the Street Nazi as he lives on the corner to our street. He puts the turtle holding the flag out in the street along with the tripod that says "I'll kick your arse if you speed" or maybe "slow down". Either way, he's our protector and he's not a petite man so most wouldn't get out of their car to mess with him. Anyway, returning to the story, the kids are playing as they always do and I come out of my place to find a car parked in the middle of the road and some guy in Frank's face. I thought I was back in Swanzey so I run over to cold conch this guy and all I hear is Frank saying, "Hit me, go ahead hit me". So I decide to save this guys teeth and kindly escort him back to his car and ask him to go back to wherever he came from. We got all the kids inside the house, the guy leaves and then we see him walking back toward us from down the street.  All ended well and it made the night that much more memorable!

Special Gift: Emma complimented Lauren  on her beautiful sea glass necklace and Lauren proceeded to take it off and put it on Emma and told her that it was her's to keep as something to always remember her adventure in FL.  So sweet and Thank you!!!






Wednesday, May 15, 2013

Day 76- Is it really time to pack?

Tuesday- 5/14/13

Today was a rather typical day of the kids going to the pool with Mom, Grammie cleaning and doing laundry and Dad working. Mima and Boppa left for the West Coast to see Uncle Joe. Nothing new on the home front besides preparing to leave. We got some boxes and bins and rented a trailer...now its time to fill them and hopefully not have to unpack them until we reach NH. I think we are all a little hesitant as we don't want to jinx anything but also that we've been welcomed into a community of great people who are now friends! As excited as everyone is to get home it's going to hard to say "c-ya later", especially for the girls and all their new little buddies.

Funny story- Maddie asked what road we were taking to get home, which I thought was a little strange but figured she was leading me down some path. I told her 95 babe and she said and that goes by Gracie's yellow house right as we have to have a sleep over. The kid doesn't forget a thing!!!

Day 75- The Home Stretch

Monday- 5/13/13

We are in the final week of phase 1... hopefully!

What does that mean???

We are done lengthening Friday according to our original schedule. We have an appt with Dr. Paley on Friday to determine if Em has reached 50mm or 5cm or 2 inches (all being 1 in the same). If X-rays confirm we have reached our goal and the position of the leg and foot are where they need to be, we will get the green light to go home. If not, we remain for an additional week or possibly 2. Regardless, whenever we return home, Em will do so with her Super Brace, continue therapy and work on healing the new bone, which is set as a two month process. We will get X-ray's taken each month and send them to Dr. Paley in which he will determine when we return to have the Super Brace removed (Ending Phase 2). That is an outpatient procedure which results in the Super Brace being replaced with a cast for a month. The cast is necessary to heal the bone from where the pins and screws are removed. We are anticipating Em being Super Brace and cast free in time for the start of her first school year in Sept. PT will continue after her cast is removed until she gains full strength and flexibility (Ending Phase 3). Both of Emma's legs will be the same length at that time. Her right leg will continue to grow but at a slower rate than her left (just as prior to surgery) and she will slowly lose another 2 inches in length on her right side. Em will have a couple options when she is around 10 years old on how she would like to correct that difference. At this time, we see it being leg lengthening again with a new procedure in which Dr. Paley has developed by means of magnets which is not yet approved in pediatrics. The other option would be slowing the growth plates in her left leg to match that of her right, essentially making her 2 inches shorter than she would be. This is a minimally invasive surgery which is definitely what I would prefer- however, with her predicted height being 5' 2" (FYI- mom's 5' 3" which is a stretch), everyone is telling me she'll opt for lengthening to get to that predicted 5' 2" height as opposed to being 5'. I will be sure she spends a lot of time around Auntie Ally over the next 6 or 7 years so she knows just how perfect 5" is!!!

Sunday, May 12, 2013

Day 73- Emma's Drive

Saturday- 5/11/13

Everything about this golf tournament was amazing!!! The only hitch was with mother nature for the last few holes of the day but with it calling for rain all day and everyone prepared, there were no real complaints! I can't put into words how special today was. I'm not one that is often short of words or concerned with public speaking however today was different. After the winners were announced and the abundance of prizes were raffled off, I wanted to thank everyone on behalf of our family. I opened my mouth and nothing came out, my throat closed, my eyes teared and I lost my breath. The moment and my opportunity were lost. I felt awful and still do as I can't express how grateful we are to all that were a part of this day. It all started a few months ago when Chrissy came to us with the idea and asked if we minded if she put this tournament together. We gave her our blessing and off she went. Amanda and I have no idea really who to thank as we were completely in the dark on all fronts. I do know that Ron and Billy were her first 2 recruits and would think that Chrissy would agree that she couldn't have done this without them. I don't want to miss anyone so I will defer to Chrissy on making this a little more personal. However, on a broader level we want to thank all 144 players, the numerous volunteers from working at the golf course or back at the Elks, all the "chefs" in the kitchen, the Elks for their continued support, the bartenders!, Brettwood Golf Course, to all the sponsors and to those that couldn't play but donated to Emma Fund anyway. Thank you, thank you, thank you! This event could not happen without each and every one of you! We are looking forward to getting home and are planning for our departure at the end of the week if everything stays on course.
Thanks again,
The OBrien Clan

Pictures to come!

Day 74- Home to my girls!

Sunday 5/12/13

Happy Mother's Day Grammie, Amanda, Mima and to all the Mom's out there!

Happy Birthday Dad! We miss you!

The family picked me up at the airport and we went out for a nice Mother's Day dinner. I had a few beers to help get over a touch of the Irish flu and off to bed.







Day 72- Off To NH

Friday 5/9/13

Em and Mom dropped me off at the airport as I'm headed home to play in Emma's Drive which is the first Ron O'Brien Memorial Golf Tournament. I'm excited to see everyone and want to thank Chrissy, Billy and Ron for all their hard work on putting this together. There will be many more thank you's to come as I hear we have a field of 144 players and great support from numerous sponsors! Amanda and I are amazed and ever so grateful for all the support and thoughtfulness of so many. Once again, our thanks go out to all!

I hear the girls and Mima and Boppa have a pool party to attend tonight. I'm looking forward to hearing more on that!




Thursday, May 9, 2013

Day 71- Mima and Boppa Arrived

Thursday 5/9/13

Mom had Mother's Day at Maddie's school today. Maddie made her all kinds of cute gifts but my favorite was all the her "All About My Mommy" letter which Maddie filled in the blanks which are in CAPS below:
My mommy is 100 years old.
She has GREEN eyes and BROWN hair.
I help my mommy because I CLEAN MY ROOM.
My mommy and I like to GO OUT TO LUNCH.
My mommy's favorite color is RED.
My mommy's favorite food is MEATBALLS AND SPAGETTI.
I love my mommy because SHE DOES STUFF WITH ME.
Happy Mother's Day
Love,
Maddie

While waiting for Mima and Boppa, we went and picked up Em's new shoe and went out for a pizza. When we came home, Hannah, Hannah, Hannah was in the pool so naturally the girls had to go say hi. I got a call to bring some towels over as the girls decided to go for a swim- in what they were wearing! We retuned home to Mima and Boppa arriving! The girls were thrilled! They also received a special face time call from their boyfriend Caleb! They have missed him Mom and I listened to Maddie and Em having a conversation in the back of the Grocery Getter the other day which Maddie was explaining to Emma that she would have to marry Cole or Massimo because Caleb was hers. It's started already. Funny thing was that Em "accidentally" stepped on Maddie's foot with her Super Brace after that ride and gave a nonchalant "sorry" and walked away.







Wednesday, May 8, 2013

Day 69- Questions?

Tuesday 5/7/13

Some of Em's latest questions:

"Why is my hair white?"

"Why is my hair yellow?"

"Is today our last day here?"

"Are we going back to NH today?"

"Will I be awake when I get my Super Brace off?"

"Will I be able to swim on top of the water when I get my Super Brace off?"

"Are we going to see Grace at her Yellow house?"

Special delivery: Thank you Grace for the beautiful collage!!!



Day 68- Happy Birthday JuJu

Monday- 5/6/13

It was Juilette's B-Day today. She wanted 2 things today- the Marriott pool and a Carvel cake- so that's what she got! The girls enjoyed the pool once again, came home for ice cream cake and then the Remy's were off to the airport!

Happy Birthday Ju Ju, thank you all for a great visit and safe travels!



Day 67- Eliza

Sunday 5/5/13

Happy Cinco De Mayo! Em couldn't wait to show her cousins Eliza (the turtle that got bit by a shark). So off the girls went to see Em's other BFF (no worries Grace- she won't trade you in). Emma relates so much of her journey's with Eliza's that sometimes I think she believes she was bit by that shark too. When she got home she told me all about how she saw Eliza, how Eliza got a shot today, just like her, how Eliza took her big stitches out, just like her and how Eliza got her Super Brace (bandage) off, just like her... huh- No she didn't get her Super Brace off but she wants to so she can run, jump and play in the sand! Two and a half more months with Super Brace then into a cast for another month before all that happens but it will be here before we know it!

This evening we visited Aunt Meg and Uncle Jim to watch the fireworks that closed out Sunfest. The girls love fireworks and this was a spectacular show. It was a late night and everyone was sacked out on the way home.





Emma explaining to the girls how they operate on a Sea Turtle.

Saturday, May 4, 2013

Day 66- Trina's Night Out

Saturday 5/4/13

Auntie Trina made pancakes for all and then the girls took a walk to feed the fish, turtles and ducks. Then it was back to the Marriott to see the Norman's and enjoy the pool. Thanks again to the Brooksie's for the water toys as the girls are getting their money's worth out of them!

We managed to knock off the cobwebs and rally to show Auntie Trina what she missed last night.. well not quite but we did get her out to our favorite watering hole- Rocco's Tacos. Grammie managed the kiddo's and the night was hit!