January 19, 2012

I'm not sure where to start... 

I guess here's a good place.... Sometimes I wonder if other parents of children with special needs feel and think the way I do.... every Cardiology appointment Im honestly 100% hopeful that they will look at me and say "Conner is all better, he is cured!! His heart is perfect and he's a healthy, playful, and will live a long life!" I honestly with all my being hope with all my might that they will say that to me.  I know they wont, but day dreaming on the way down to his appointment kind of gives me a little more hope.  Until they say.... what they said today...Based on the ECHO today,  they found that his pressures are in the 70s, they were in the 50s six months ago. He 80-90% systemic vs six months ago he was at around 40%. This means that his conduit is narrowing and its narrowing by the valve.  This means that they most likely cannot fix it with a stint (they can but it would make the valve either leaky or leave it completely open.  I think that would in turn cause pulmonary hypertension), so the hope is to fix it by ballooning it. If they cannot fix it in the cath lab (by stinting or ballooning) then he will require open heart surgery this year. 

Conner has continued to hold his own and do amazing at showing the world how courageous he really is. 

Your Scar ( I got this poem from another heart mom)

Sometimes I have those "moments",
When I think...life's just not fair,
Then I think of all you've been through,
And I see the scar you bear.

A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?

And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.

What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)

People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)

Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.

If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.

It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?

You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.

No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.

You've taught us to love one another,
(Helping eachother to cope)
You've taught us compassion for others,
You've taught us to never lose hope.

You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

January 5, 2011

Where to begin....

We are all moved in and settled into our new place! We love it here!  Conner fell sick on November 28...after about two weeks of fevers, several doctors visits, one overnight stay in Childrens Hospital and one more visit to the ER showed that he was having runs of EAT because of the Rhinovirus yep you read that correctly! A simple cold virus triggered his EAT...And nope he hasnt outgrown it.... sigh.  His heart rate got to 240.  At some point in there it was determined that Conner had MONO.... I know right!??? Well the Monospot test came back positive but the antibodies came back negative. He fevers for 2 weeks straight and then fevers here and there for another two weeks. He is so much better now!

Christmas was amazing!  Auntie Crystal and Uncle Dave came over and we had a visit for Auntie Sarah too!
New Years was simple but fun! :)  Leo and Alex really enjoyed their two weeks off but were excited to go back to school too!


I will update more later :)

Until then hugs!

Also could everyone remember to say prayers for all the little ones in the hospitals...the parents by their bedsides... and we must not forget all the little Angels... and their parents hugging their little ones with their hearts....

Heart Hugs,

Jessica

11/30/11

I thought it was time for an update!  I hope everyone had a wonderful Thankgiving Holiday! So much to tell! So much has happened in two weeks!  Hmmm where to start... well we are still battling colds, and sinus infections but we will get better soon... these past few days have better rather rough for Conner.  He has been battling a fever ranging from 101-103 nearly 104.  Yesterday he had a blue spell, his extremities were cold and dusky as were his lips.  Needless to say, I rushed him to his doctor. Turns out it was because he was cold and his fever after being gone all day came back with a vengeance at 102.  His oxygen saturation levels were fine.... thankfully!  But that was a super scary moment bringing me, for a few minutes, back in time.  Once his amazing pediatrician Dr. M and her awesome side kick Aja determined that Conner was okay and just needed a little motrin I finally exhaled and had a minor.... I repeat minor meltdown. Conner has since then broken into a rash of sorts... if its not gone by tomorrow I was instructed by his homecare nurse to notify his doctor.  On the bright side of things, Conner his walking now!  Well 95% of the time he his! He is a determined little guy too!  If he decides he is going to walk across the room and his makes it 3/4 of the way and falls... guess what he does!?  He fusses for a minute, crawls back to his starting point and tries it again! He tries until he succeeds... He loves singing "Itsy bitsy spider" too!  He cant quiet say the words yet but he tries!  He attempts that hand gestures too! Its super adorable! He has started dancing and giving high fives!  He says "thank you" now too!  He has said "Where is it" and "I see it" his favorite one is "Whats that?". Earlier this evening he was sitting on his knees next to the couch, playing with a car saying "vroom vroom vroom" Im so thankful for all these milestones, because there was a time when we werent too sure if he would ever be able to meet any of these milestones!  He is surely amazing! He and his older brothers are SUPER close, its clear to anyone just how much my boys love one another! Granted there are times when Leo and Alex argue and bicker and fight.... seeing as Leo is 9 going on 16 and is very into "this belongs to me".  Ah the joys of independence.... he calls himself a "Tween" WHAT on Gods green earth is a TWEEN you may ask?  Yeah... I know... I asked the same thing and in the words of my 9 year old....eh hem....I mean my tween... "its when you arent a teenager yet but not a kid anymore"......I KNOW RIGHT! Makes ya feel old and SO behind on times. <insert nervous chuckle here> He is in the phase of "Yes, mom girl cooties ARE real! Every girl has them!", "thats my spot", "sigh can you PLEASE not stare at me" and the "SIGH.....nothing, nevermind" Reminds me of me when I was 16 going on 25 and I thought I knew everything.  Im in for it... I know. But I love that boy with all of my being!  Oh Alex my sweet little character.... he is LOVING kindergarten!  He is learning to READ I cant believe it!  In October I volunteered in his classroom but since the end of October I have been battling one cold after another and these arent little colds, they are knock you on rear end kinds of colds! I am determined to go to his class tomorrow and volunteer. Im not 100% but nothing a little cold medicine cant fix! I have been some what out of comission for the last few weeks but Im getting there! Alex is getting taller and losing all his baby chubbers :-( He loves to dance and sing and make people laugh!  When he brought home his Thanksgiving art project, in his handwriting it said four things he is thankful for and in this order he wrote 1.Food 2. My Mom 3. My dog and 4. My hows (I think he meant house)...  I made the list!  Im doing something right!

These next few weeks are going to be hectic and filled with chaos.... we are moving, Alex' birthday is coming up (birthday party on moving day) should be interesting.... boy when I plan something, I plan BIG.  Ugh... LOL.  Well we will see how it goes!  Then organizing our new place and Christmas... fun stuff!  Time to get into gear! 

Well if Im not able to get on here before Christmas....MERRY CHRISTMAS!!!

Smiles and Hugs,

Jessica

Love, Conner

Hi Guys! Its me Conner, dont tell mom I figured out the computer! I wanted to let you all know that Im doing GREAT!  Im so close to walking!  I also wanted to let you know that Im doing a fundraiser for Congenital Heart Defects and Heterotaxy through Scentsy!  ANYTHING YOU OR FRIENDS AND FAMILY PURCHASE WILL HELP KIDS  WITH CHD AND HETEROTAXY! So when you smell that sweet smell of lavender, vanilla, or whatever you scent you choose it will be a friendly reminder that you are helping one of my friends, who like me, were born with a broken heart! ALL of the the consultants profits will go towards The Heterotaxy Network and CHD research and funding...100% of her profits!! She doesnt do this to earn extra money for herself... she does this to help kids like me! Just click this link https://thn.scentsy.us/Home (or copy and paste into your browser) and then click my mommys name Jessica Lewellen and have fun shopping! If you purchase the Scentsy Sasha Bear, like the one I have,proceeds go towards Ronald McDonald house to help families in need when they are at Childrens Hospital with their loved one.  I hear the plug in warmers are GREAT for bathrooms!  If you need replacement parts or lightbulbs for your warmers they have those too! Send this invite to your family and all your friends too! Christmas is just around the corner wouldnt it be great to purchase a gift and give it to your friend or family member knowing that, that very gift could be the reason a little child like me feels better today?

Even if you cant purchase any items today, please forward this email to all your friends and family... my goal is 500.00 raised by December 1, 2011....... all it takes is to purchase an item that will fill your home with any wonderful scent of your choice! 

Some pictures to share :)

Conner cuddling with daddy

Alex at the pumpkin patch with me and his class

Conner and Daddy

Leo, home sick a few days ago

Leo and Conner snuggles... these two love one another so much!

Momma and Conner

Alex :)

Conner the dragon

SuperAlex

Leo the Ninja

Look at those eyes! So handsome!

Some of the oils I use :)

November 6, 2011