Tuesday, December 8, 2009

Up for Air..........


Work, school, homework, Dr. appts., dentist appts., OT, PT, SP, errands, laundry, 3 very energetic children, a husband, Thanksgiving and Christmas shopping..............just to name a few things that have kept me busy these past 3 weeks (causing me to neglect my precious keyboard:)  I was so anxious to join the world of blogging and then I neglected my duties shortly after.  But I'm back..............well, I had to come up for air!

First off, I hope that everyone had a wonderful Thanksgiving holiday with those you love.  We at the Gomes household hosted our 4th Thanksgiving dinner for 13 family members.  Landon celebrated his 1st Thanksgiving with an Earth's Best Apple Turkey Cranberry meal which he absolutely loved, topped off with vanilla custard for dessert which he loved even more! (pics still to come)  Mason and Elijah officially ate their 1st Thanksgiving dinner (it was so nice to not have to serve spaghetti with parmesan cheese)..............their menu is slowly growing:)  It was a wonderful day with good food and even better company.  I am  so very thankful for all that we have: family, food, clothes, a roof over our head, our health and.......Landon's EI team for believing in Landon's abilities and giving him the tools to reach for the stars . 

Landon's EI team came to our house the day before Thanksgiving for his assessment.  It was time to re-evaluate his IFSP, (in which he met all of his 6 mo. goals - "hooray for Landon"),  to set some new ones.  And of course Mr. Landon does not perform on cue.........he has a mind of his own and only performs when "HE" wants to.  Fortunately, his team is well aware of what he "is" able to do (regardless of when he chooses to do it)...........that little bugger!  In a nut shell, Landon did very well.  He excelled in most areas with no delays but still showed a delay in the gross motor area (which was expected).  No surprises!

Landon has shown such great gains in the past 6 mos. and has tackled each hour long therapy session with such will and determination.  My heart feels heavy for him at times seeing how hard he has to work to do the smallest of things (things we just expect our children to do - naturally).  I just wish the mountains weren't so high sometimes.  I can only hope and pray that his struggles are few.  It just seems so unfair!!   We take so much for granted.   But, in retrospect, I am so excited for all that Landon  "is able" to do.  So profoundly proud of each and every achievement.

I get to leave work every Wednesday to go home and observe Landon's therapy sessions...........yes, that's right, me and my camera. I have been taking pictures of Landon's sessions to show others how he is progressing.  Thanks Lauren (Landon's OT) for being so patient and having such a great sense of humor.  It really is amazing (looking back at these photos) at all the tools that are used to help Landon to meet each of his goals.  He is such a trooper!  I am just so happy that some of my excersise equipment is getting some use.....even if not by me.  I can happily justify the expense........ok honey!  lol 

So, as I inhale and dive back into the craziness of the Holidays, I will leave you with this slideshow while you await my return! 

Sorry that the slide show showed up below as a separate post.................I am still trying to figure this thing out!

Landon's Climb at OneTrueMedia.com

Monday, November 16, 2009

Welcome to Holland

I have mentioned earlier that we have been blessed with such loving friends and family.  Landon's diagnosis has really touched each and every one of us on many different levels.  I know sometimes that people are at a loss for words.  It really is OK.  We are all OK
For those of you wondering what it is must be like or how "I" must feel:  here is a great summary of raising a child with special needs.........

Welcome to Holland

by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your time mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

I have had the opportunity to travel to Italy twice now.  And I have enjoyed it both times.  It's just a really fast pace kind of place with lots of stuff going on.  It's hard to catch everything.  You just keep on moving and hope to  see everything you possibly can.  But somewhere along the way you realize that you did indeed miss things, things you really wish you did see, things you really wish you could remember.  But you can't turn back because Italy is a big place and you have to keep on moving to keep up.  But you'll always have the pictures and memories to remind you of certain stops along the way.  Truly wonderful moments!

Holland is my third stop.  And I must say it truly is a breath of fresh air.  It's nice to sit back, put the car in cruise control and really enjoy the scenery.  It is beautiful here.  There is lots to see and the pace is a little slower.  The cars aren't speeding by and people aren't waving hello/goodbye as they run right by you trying to get to the next stop quickly or rushing to the front of the line.  In Holland, people enjoy a leisurley stroll and take time to stop and talk for a moment or two, sometimes to check out the windmills or see the delicate details of the tulips.  Sure, we have places to go and things to do but we try not to let the clock dictate our day/time.  We will get to those places and do the things we want to do........all at our own pace.  Isn't that what a vacation is all about.  Taking the time to really enjoy the beauty of the place you are visiting.   I want to share my pictures of Holland with others who may never make it there.  And I want them to see all the details and beauty that Holland holds.    

I will admit that traveling back and forth between Italy and Holland can have me a bit jet lagged at times.  In Holland you have more time to think and you pay more attention to the small details.  I don't want to miss the small details in the beauty of Italy either.  So through my travels, I am learning how to get the best experience out of the place I am visiting.  I am learning that Italy isn't going anywhere anytime soon.  It will always be there.  So for now, I will just sit back and enjoy the ride!

Thursday, November 12, 2009

Our Story

Sorry it took so long to get this site up and running but "free" time is very rare in the Gomes househould.  After all, having 3 boys under the age of 8 is quite exhausting..........I mean "FUN"!  lol  I have been writing since giving birth to Landon 8 months ago and have decided to just condense everything into a few  blogs to catch everyone up to speed and then I will continue to blog in "actual time" going forward. 

And so "our story" goes..................Landon was born on February 11, 2009 at 9:51pm weighing in at 7lbs. 1 1/2oz......... 21 inches long.........and an extra chromosome........(as in Down syndrome).

In short, we had an extremely high risk factor during our pregnancy, (1 in 3), but chose not to participate in any extra testing.  Level 2 ultrasounds showed no markers (signs) of Ds.  Scott and I had decided that we would welcome Landon into this world however he chose to enter it.  And so he did, willful and determined to be his own person.  Landon continues to create his own identity, and his joy spreads beyond our family home.

Landon has entered this world surrounded by so much love and enthusiasm.  He has 2 proud and caring big brothers - Mason & Elijah- who just love him to pieces as Landon does them.  And we are so blessed to  be surrounded by such  loving and supportive family and friends that have been by our side every step of the way.  To all of you we are forever grateful.  Because of you, we have so much hope for Landon's future and acceptance.

Landon is teaching us to take life a little slower - to hurry is to miss the good stuff.  He has shown us that a bright smile  can be contagious and make even the worst day wonderful.  Landon teaches us something new every day about ourselves and about others.  He encourages us every day to be better parents, and better human beings.  These are the blessings we get to live with every day as Landon's parents. 

And so our "inspirational journey" begins.  We know that we are going to face some challenges along the way, but we also know that we will reap more riches than most will ever know.  Landon "WILL" live a rich, full and happy life because of the love and support of each and every one you!

                                                   Elijah, Landon & Mason

Thursday, November 5, 2009

Halloween 2009

I always look so forward to Halloween...........maybe even more than the kids!  Scott and I always take part in dressing up along with the kids.  Well, I actually like it.......Scott.......not so much (but he still does it - always there to take one for the team)!  Go honey!!  This year was especially special as it was Landon's very 1st Halloween!  I enjoy picking out the boys' costumes (well, until they are old enough to pick out their own.................umm........so that left me with just Landon's costume).  This year I decided to go with a "frog"........well he does have a built in prop.........his "tongue"!!  And I must say he was the cutest frog EVER!!  See for yourself!

Well, I guess I am a bit biased!

Mason chose to be "Snake Eyes" from the movie G.I. Joe (not that he has seen it) and Elijah chose to be "Dash" from the Incredibles (quite fitting I must say)!  And a quick put together for Scott and I (as doctor/nurse)!

The kids had lots of fun and got tons of candy!  Plenty to share with mommy and daddy!  The weather was beautiful that night which gave us the opportunity to do a little extra "trick or treating"!  What FUN!  This also gave Landon an extra long nap!

Seeing as Halloween was on a Saturday this year, it gave Landon the opportunity to have a couple of wardrobe changes:

What a great 1st Halloween memory we will have for years to come!

2009 Buddy Walk

We got to participate in our very 1st "Buddy Walk" this year in Wakefield, MA on October 11th.  Wow, was that day worth waiting for!  The weather was beautiful, the company amazing and the speakers................INSPIRATIONAL!  I was amazed at the outcome......over 2200 walkers!  We were part of our local support group's team "21FrienDs" who had over 100 buddies this year.  It was nice to see so many families coming together to celebrate a common bond!  (Much different than some of the literature out there!)  Our children truly are something to celebrate!  And I am convinced that this is one tight knit community.............and I am happy to be part of it!!  I am a bit disappointed that we didn't get to many pics of the day............we were too busy walking and just taking in the whole experience!  One that I look forward to next year!!

Lots of walking and lots of fresh air makes for very exhausted children................

Mr. Elijah

Mr. Mason

But where was Mr. Landon...............................................................................

oh yeah, he was driving us home!!  lol

Tuesday, November 3, 2009

Cruising along............

We know that Landon will set the pace for our journey, and to be quite honest, that is fine by me.  Scott and I secretly  love having the baby stage a little longer.  After all, they do grow so fast.  We are very fortunate that Landon has had no health issues up to this point.  An extra day in the hospital for feeding issues was all.  Landon has been involved with EI since he was 3 months old.  He has OT twice a week, PT twice a month (soon to be increased) and ST twice a month.  I am so happy with our EI Team and have seen such great progress.  Landon is rolling all over the place (both belly to back and back to belly), sitting for up to 30 seconds (unassisted), eating like a champ, beginning to pull his legs under his belly in an attempt to "scooch" to get to something he wants, beginning to drink from a sippy cup (yes, a sippy cup), gumming wagon wheels, clapping his hands, licking his toes, smiling and just loving life!  Aaahhhh...........and his new hobby...........READING...

Just cruising along...................

Thursday, October 22, 2009

The Diagnosis Delivery

Labor and delivery were extremely tough for me the third time around.  After much anxiety, I clearly remember the relief I felt when Landon finally entered the world.  I remember hearing him cry as the doctor's suctioned him.  Ahh, the joys of a new baby crying!!  And I remember thinking how much Landon looked like his brothers.  A great combination of the 2.  He of course looked puffy and swollen which I chalked up to the road he just traveled.  His eyes were puffy and slanted just like the boys were when they were born.  I can vaguely remember the silence in the room as the staff spoke ever so quietly.

I remember the pediatrician who had evaluated Landon  congratulating Scott and I on the birth of our beautiful and healthy baby boy.  He stood beside us as we compared Landon's features with Mason's and Elijah's.  He was very kind.  And he gave us our proud parent time.  After a few moments he acknowledged that those similarities would be true and informed us of some markers he noticed at birth.  Landon had a thicker neck, a flatter nasal bridge and a gap between his big and little toes that would be consistent with some markers found in children with Ds.  He then asked us if we would like to have a blood test done.

I remeber feeling really confused..........and asking him if the blood test was to see if he had Ds or to confirm what he already believed to be true.  The latter being the answer.  Scott said he thought something was different and that he noticed a couple of things that were different from when Mason & Elijah were born.  He also noticed that the staff had been communicating quietly.

Numb.  It took a minute for my mind to process the information I had just been given.  Now, I know realistically how I felt during my pregnancy after getting the call that my risk factor was 1 in 3.  But I also remeber how hopeful I was when we were told that there were no markers on the level 2 ultrasound. 

Sadness.  Why Landon?  What does this mean for him and his future?  How do we tell his 2 big brothers (who are eagerly waiting to meet him)? 

Angry.  I'm not quite sure at who.  At GOD?!  Why is this happening to Landon?  Why does this happen to any child?  Why should he be denied of the things that we all take for granted?  Why is life so UNFAIR?!  All babies should be born........well......."perfect".

Scared.  I don't know what it means to actually raise a child with special needs.  Where do I begin?  Will I be able to give him everything he needs?  Is there enough of me to go around?

Informed/Educated.  Scott and I had the opportunity to speak with a former nurse (who visited the maternity ward on occasion when a new family was given a Ds diagnosis).  She shared with us her story about her son (who also was diagnosed with Ds at birth) born at a time when a Ds diagnosis was not expected to show great outcomes.  Not only did this child beat the odds..............he actually "chose" to live on his own (assisted living).  She left us with a new perspective and some great resources to prepare us for the journey we were about to begin.

Hopeful.  It took a while before I felt I had the confidence enough to take that first step as Landon's  advocate.  About a month later (after reading many books and surfing the web on anything Ds) I had decided to put some of those great resources to use.  I made a couple of calls and was connected with some wonderful people (the MDSC and a local support group "21FrienDs") who have become an important part of our support circle. I made a promise to myself (for Landon) that every day I would educate myself so that I would truly be his #1 advocate.  And with that education I would help spread awareness so that others would see what we see: a thriving, healthy baby boy just waiting to "WOW" the world with his presence and abilities.

Inspired.  Through Landon, we have been introduced to this warm and welcoming community.  As our journey begins, we have met some amazing people (some who have become very dear friends).  Their ability to act so selfless, and to take time to share their family's experiences and struggles, has been most inspiring.  Each story is so unique yet we share this common bond.........our children..........a sense of camraderie.  Through these remarkable families, I have gained wisdom and knowledge and the  courage to face any challenges that a Ds diagnosis may throw our way.  And finally, the strength to get through it, knowing that we are not alone.

Blessed. Yes, truly blessed.  Blessed that Landon is part of our family.  My only regret is that I went through so many other emotions before I got here.  But I guess that is what part of this journey is all about.  Exploring the depths our hearts can go!  I have the most loving and supportive husband (oops......did I just say that.........just kidding honey) and 3 beautiful, happy and healthy boys!  A great big family and the best of friends.  We are so fortunate to have such a solid support circle. We couldn't ask for a better group of people to travel with!

Welcome to the world sweet baby boy!  (with all 47 "PERFECT" chromosomes)