ETHAN UPDATE

Ethan doing quite well....yesterday he felt better and actually played with his toys.
The weekend was a little rough.....on Saturday he had a difficult day - his CO2 level became a little elevated and his heart rate was a little slow, so was transfered back to the ICU for monitoring.
They did all the tests to make sure he was alright - which he was - and by the end of the day he was doing a lot better. He managed to get a good long sleep and that seemed to help.
Thanks everyone for your thoughts and prayers!!!

IPODS CAN HEAR

I have owned an ipod for a very long time now and only 2 days ago did I realize that they have an undiscovered function: they can hear!
This is how I came upont this discovery: After a run one morning my ipod decided it would stop working. Blank screen, no button I pushed got the darn thing to light up [and yes I tried plugging it into my computer for power and even to the adaptor just in case it needed extra energy that the USB port couldn't supply].
I then passed it onto Fil who tried to work his magic with the thing...but he too had no success.
Of course I was shattered! After all it has been my running companion for such a long time and always keeps me awake in the subway in the early morning on the way to the gym before work.
Yesterday before I left the house for my run I saw it sitting there on the table and found myself saying: "Don't think that just because you quit on me I'm going to stop. I'll just trash you and get a new companion cause I got a lot of Ks to go before the Half Marathon!"
I picked it up and pressed a button and to may great joy it worked!!!!

ETHAN UPDATE

We got a call late last night from mama to say Ethan is doing very well.
Straight after surgery apparently he nursed....I can imagine that he must have been starved, and he's not fooled by that IV liquid they say is food....Mama's milk will definitely help him recover and get stronger faster!
Today they are hoping that he leaves the ICU and in the next couple of days he should get to go home. HORRAY!

THANKSGIVING + UNCLE LEVI'S BDAY

In Portugal we don't celebrate thanksgiving, I guess for us Christmas is the time when you give thanks....
Each year I have had the fortune of being thankful for so much, despite all the twists and turns the years have brought [and there have been a few more than I would have hoped for!] and this year is no exception.
Today I can say that I am thankful for my great family [and that includes the extended family, you know who you are!].
We have what I call our «power house» where e know we are safe and where, no matter what circumstances, there is a helping hand to help us overcome everything. This year we have a new member in the family, little Ethan, and so our «power house» has become stronger, in ways that I am learning about every single day.
Little Ethan has also just undergone a major head surgery, at 2 months, and according to dada is recovering well, so thanks to all of those at Boston Children's Hospital, and way to go little E.

It's also uncle Levi's birthday [HAPPY HAPPY BIRTHDAY!!!]. Levi is definitely getting older but he's running like he's 20 and to make sure he stays that way started the day with an 8km tempo run [I was there, I saw it!!!!]
So I've got to run....don't want to be late for dinner.

Lets hope he doesn't eat the cake like this cause I want a piece too!!!!

A Special Present!

Wraped up in tubes and bandages, I received today a fabulous gift from my nephew Ethan...

The surgery went well and recovery is under way!

 

SOMEWHERE WHERE DREAMS REALLY DO COME TRUE

A LITTLE EXTRA LIGHT ON THIS BIG DAY

It's surgery time today for little Ethan....and before waking up time in Boston today I started out with a prayer - that all goes well and that Ethan has a speedy recovery and soon gets to go home and enjoy his brother's hugs, kisses and giggles....

A few moments ago we got the information that the anesthesia had gone well and that they had begun the surgery....it's meant to last anywhere between 6 to 8 hours, so keep your thoughts and prayers flowing his way.

CROSS YOUR FINGERS

Wishing surgery goes really well and little Ethan gets a speedy recovery....

ETHAN'S PRE-OP [Dada Update]

Last week Ethan meet with Dr. Merek and Dr. Waters who are both orthopedic specialists at Children’s for the feet and hands respectively.

With regards to the feet, no new news which is good since it validates everything we’ve heard form Dr. Upton – his feet should be fine and there doesn’t seem to be the need to do anything. He’ll be able to run, walk, etc. and how well will all depend on his mental development. He repeated what Dr. Upton said regarding the fee in that he’ll fit into normal shoes and will probably have one or two calices under his feet from the unusual bone growth there.

Dr. Waters was exactly of the same opinion as Dr. Upton and obviously knew him well saying Upton had worked on many Apert’s cases.
We are keeping Dr. Waters on our list of doctors as we have yet to figure out if we can financially cover Dr. Upton since he does not carry our insurance. We should be ok but it’s always good to have a plan B. I’m also thinking of keeping the foot orthopedist on the list, more because he’s an orthopedist than anything else.


PRE-OP CONSULT
There really weren't any tests done so everything went “clinically” well. However, they needed to draw blood to test before the surgery and poked Ethan several times with no success. That means we’ll need to go back to try and draw blood in a quantity they can use. HEY YOU...STOP POKING MY NEPHEW....IF YOU'RE GONNA DO IT JUST GET THE DARN BLOOD AND LEAVE HIM ALONE!!!! - Hoping that will do the job.

FLULESS

YESTERDAY'S EASY RUN FELT LIKE THIS



The flu has finally left to the point where I can run again....So I have started to catch up on the lost week.....this week, shorter easy runs to up the mileage and hopefully get back into the flow.....

NEWS FROM ETHAN - [By Dada]

Ethan has been developing well the last couple of weeks and has grown to the weight of over 5 kg. Having in mind that he was 3.6 kg one week after being born, that’s pretty impressive weight gain and obviously a good sign, especially given the fact that he has upcoming surgery on the 25th. I don’t think there is anything we can do to prepare emotionally for this so it’s something we keep in the back of the mind that we just have to tough out.

Meanwhile, we’ve had a couple of additional doctor visits. First, I think you already know, was the overnight oximetry test that revealed Ethan was getting enough oxygen, so he has been off the o2 for a while now which is great (what a bloody nuisance that thing was – you try holding nose tube in place). Then we followed up with a visit to Dr. Upton who is a plastic surgeon specializing in hand and feet reconstruction. I have to say that both Brittany and I really liked this guy. He’s been one of the first doctor’s to see Ethan as a person and a human being while at the same time being clinically pragmatic. We went to his office in Chestnut Hill and saw all the hands and feet he worked on (he makes molds of his work) - he had a room (kind of like a trophy room) filled from bottom to top of the work he had done and it was pretty amazing. His experience with Apert’s is vast (he’s done tons of Aperts hands). The thing that stands out about him is that he remembers everyone he has done surgery on – by name. He kept picking up molds and saying, well this is so and so, and I have’t seen him in a while but his mom was bla bla bla... The only problem was tat he did not carry our health insurance plan but he also assured us that money was not going to stand in the way either – he would do the surgery for free if need be. Pretty nice guy if you ask me :)

On another note, with the exception of Ethan, my Mom and Brittany, all the boys have had a bought with the flu/cold. I kicked us all off, closely followed by Callen then Liam. In the kids schools, at one point Callen had 10 kids left in his class so it’s really going around. They are no longer testing for H1N1 and the general assumption is that if you have the flu, you probably have H1N1 and should treat it accordingly. Meanwhile, we’re still waiting on the swine flu vaccine that is nowhere to be found. The good news is we are now emerging from the flu/cold bought, with some very minor lingering coughs but with no more fevers, headaches and constant coughing. Ethan has been breastfeeding like a champ and as you know, that means he gets all the good stuff in mother’s milk has to help fight off viruses and such. Of late he does seem to have stuffy nose which obviously makes his breathing harder, specially since his airways are also congenitally narrower.

We also had a visit from the early intervention nurses that are real stars and whose goals are to help Ethan achieve his developmental and social milestones. Right now it’s a little to early to tell where Ethan is but the expectation and norm for Apert’s is for developmental milestones to be reached later than usual. However, recently Ethan has been rolling himself over and making plenty of eye contact and typical cooing sounds (sounds like vowels) which is good. The kid still loves to stare at wall shadows and out window (I’d say he has a fascination), and thanks for Pepa (my sister), he has had the company of his two little friends he loves – they are called spot and dot (on account of the fact that one that has a bumpy nose, spot, and the one that has a flat nose, dot).

11Km (LONG RUN!)

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ORDINARY MIRACLE

R

RUNNERS WORLD DAILY QUOTE

Believe that you can run farther or faster. Believe that you're young enough, old enough, strong enough, and so on to accomplish everything you want to do. Don't let worn out beliefs stop you from moving beyond yourself.

John Bingham, "Tools and Rules," Runner's World

FLEXIBILITY -PART 1

Today I pulled myself out of bed and hit the gym.....the program said 8kms interval training but the truth is my body just wouldn't give.....so instead I did tommorrows 3 km easy run and gave myself a break!
Today's lesson for me is: flexibility is key!
We make all these plans and set all these objectives but sometimes life get in the way and we've got to get around the unexpected things that pop up....adapt and keep pushing on in the right direction.
But I wonder why being flexible about certain things seems so easy and about others is so much harder...maybe it's all about the uncertainty of the direction and not about the flexibility.
When things beyond our control happen, sometimes we freak out because in our minds they seem make the path ahead unclear, either because we no longer know wether it is the best path to take, or because we are afraid of going down the path only to see that it's really a dead end, or just because some days thinking ahead just seems like to much work.
Can't finish this thought right now....got to get to a meeting....will be back soon

[ETHAN CHALLENGE]

Hi There,

I think that I've finally come to grips with publishing out to the blog...

As you yourself have said seeing is believing. In the meantime and until we start using our eyes while we run a quick note to say that I hope grandmas recovery will be as fast as our progress!

  

Levi

STILL LEARNING...

Peps,

I still have to learn how to post on the blog...

Although you tried last night to deceive me with erroneous information about todays training session, i would like you to know that it was entirely unsuccessful. The attempt to open a gap of miles covered between us failed for i too have miled for Ethan and am up to the challange!!!!

Levi

PS: See you tomorrow on the mat! or maybe not if you decided to quit?? :)

WEEK 2 BEGINS...

Is Done!

The great thing about our training program is that it has Monday as a rest day, just imagine if the long runs were on Mondays after work...I was hoping that the fact that they call it an EASY RUN would make waking up and heading out the door easier but I must say that today I almost stayed in bed after the alarm clock went off. But I have places to be this afternoon so I really had to tell my brain to open my eyes and get my body out of bed....1 late night and all I can think of is SLEEP! The thirties really hits you hard!

I wonder if Levi made it or if he just slept in today....

I am hoping to get an update on Ethan boy....he's got a lot of people meeting with him today and a Doc appointment in Boston....and all that has to fit around feeding times and diaper changes.....Ethan's dad has promised to send some recent pictures of Ethan - I hear he just put on an amazing smile :)!!!

I know Ehtan's brothers and dada have been a little ill this past week with a cold I think [maybe a flu?, never can quite tell the difference...].Wishing them all a speedy recovery and that Ethan boy and mama hold strong!

THE TRAINING PROGRAM

The first thing we decided to come up with was a training program to help us complete the 21kms....We got the program through runnersworld....
Training started this Tuesday and I am pleased to say that both Levi and I have kept to the plan....Sunday's are our long run days so the week is still not over!
Here is the overview of our training. We will post details on how our training is coming along...

QUALIFICATION

To qualify for the Ethan Challenge Levi and I had to successfully complete the «10km Corrida do Tejo 2009». It is half the distance we will be running and turned to be quite a challenge....
The race starts out in Algés and finishes in Santo Amaro de Oeiras and looks like this:


After the first tough uphill through Alto da Boa Viagem, finally a recovery downhill only to get to what would be my downfall....at the water stop and after grabbing a drink on the go I did not manage to avoid the bottle the guy in front of me tossed out and for a few minutes thought I would have to hop to the finish line, since I was determined to qualify no matter what.

All was ok and slowly I got back, by this time I had lost sight of Levi and decided that I had to push on ahead....making it in under 60 minutes wasn't going to happen but I no longer had that in mind....

Ât the finishing line I managed to caputre the thoughts that were going through our minds and decided to share them with you

INTRODUCTION

Dear Family and Friends,

As a lot of you already know, on the 10th of September of 2009 our nephew Ethan was born in Boston, and within minutes of his birth he was diagnosed Apert's Syndrome.

Apert syndrome is a rare genetic mutation in approx. 1 in 200,000 births that when it occurs causes the fusion of the hands and feet as well as premature fusion of the sutures in the skull. Ethan will face considerable challenges as he grows to minimize the effects of this condition.

So far Ethan has impressed all of us and doctors as positive about his development. His first major challenge will be to undergo surgery at two and half months to release the prematurely fused sutures of the skull ensuring the brain grows and develops naturally. This will take place in Boston's Children's Hospital.

The journey ahead will be long and challenging and although we cannot take his place and alleviate all that he will go through we are committed to giving Ethan the best shot of having the care and opportunity he needs to lead a normal life. We are also committed to raising awareness of Aperts Syndrome and making an effort towards funding research into it's treatment.

As part of this commitment Levi and myself have decided to Run the Lisbon Half Marathon being held on the 21st of March 2010 to raise funds, which we have never done before, so we will really need help. You can help by making any contribution, no donation is too small:


Some giving ideas that might interest you:
(i) An amount for completing the Half Marathon
(ii) An amount per Km logged - in training or in the race
(iii) 10,09€ -because Ethan was born on 10/09
(iv) 6€ - Ethan's PICU was n.º 6
(vi) 6,11€ Ethan's age in months and days on the 21st of September

Close friends have said «you must be crazy!» and remembering school days when I actually got a detention for hiding behind a tree during cross-country with a group of fellow runnerfobics....I have to agree that it's going to be a big challenge! We will not beat any of the Kenyans this year, but we will be winners with Ethan in this challenge.


It is super easy to sponsor us: just send me an email and I will send you the details

Here you can also catch up on the latest news on Ethan, and keep an eye on how our training is coming along. Comments and feedback will be much appreciated

We'd also love to have any supporters there on the big day, so please don't hesitate to postition yourselves along the route!! [Levi isn't quite sure about that!]


Once again thank you for your support. .