Thursday, February 25, 2010

Finally it is here....


Well months of planning and our cruise date has finally arrived. We are so stinking excited...and a bit nervous. Please pray for us as we drive to Florida and then cruise out to the Bahamas. Whenever we go away for vacation we have been close to our Children's Hospital or we map out the closest one to where we are staying. This time we will be in the middle of the ocean!!!! No Children's Hospitals around. So needless to say we are a bit nervous and pray all goes well with Nicholas.

We are going with friends of ours that also have four children-one girl, Megan's age, and three boys. The kids are flipping out they are so excited. They deserve this trip. They are awesome children, great siblings to their little brother and have been through so much in the last three years. Please join us in prayer for safe travels, all goes well with Nicholas, good health and lots of fun!!! Pictures to follow...

Tuesday, February 23, 2010

Prayers for Layla Grace


A nurse friend of ours told us about this little girl. She is two years old and has cancer. Please pray for this family and for Layla Grace. Here is her blog site...http://laylagrace.org/

Tuesday, February 16, 2010

I have my moments...

So I am going to be honest. I have my moments sometimes. Times when I wish Nicholas could be a normal down syndrome child. I see kids his age laughing, running around, eating and drinking, playing in the snow. I hear parents talk of potty training and moving out of the cribs into big kid beds. It hurts. My heart hurts and aches sometimes.

I hear of kids being sick and in a few days they are better. Not our son. Every single time Nicholas gets sick I start to fear. Is this it? Is this the illness that will take him from me? When I don't hear Nicholas breathing, I look at him to make sure I see his chest rising up and down. To make sure he is okay and alive. Do you have any idea what that feels like? That is our norm. That is normal to us.

It's normal for our kids to wonder why Nicholas is going to the hospital. To wonder how long he will stay-a week, two weeks, will he code again? It's normal for our kids to see therapists in and out of our home, to have so much special equipment, to have spare oxygen for those "just in case" times.

So, yes, sometimes I wish we could be like other families. Not to have these fears anymore. Then I have moments like today that remind me of how blessed we are and how special our little Nicholas is to so many people.

Nicholas got his feeding tube replaced today. Every six months we make our way to the hospital to get this done. The ladies in radiology are so nice to us. They don't remember our names but they remember Nicholas'.

Waiting...
Still waiting...

And still waiting....
An hour and a half later they are done. The whole process probably only takes 15 minutes though! I am waiting at the end of the hall so I can see when they bring him out. There she is with my Nicholas. My stomach immediately calms down and I get excited to hold my baby again. (It never gets easier to send my son off to have procedures done.) Well, the nurse stops to talk to another nurse. Come on, lady, bring my son to me! She continues to talk and then the other nurse bends down to talk to Nicholas. Then a third nurse comes out and kisses him on the head (lady, don't you know you shouldn't be doing that? Germs?!?!?) All of theses nurses are the radiologist ones. The three of them continue to talk to Nicholas, rubbing his hands and head, smiling and kissing him. I forget how anxious I am to get him back and watch this with pride filling my heart.
That's my son. My son whom they love. My son has touched these three ladies lives so much that they forget protocol to kiss him and love on him. They love him so much that they don't care that mommy is waiting to have him back. My son. My precious little Nicholas that the Lord has blessed us with has touched so many lives.
I love my son. I love him just the way he is. He brings so much joy to us. Yes, there is heartache and hurt but there is so much love and joy that overcomes any heartache. If everyone had a son like Nicholas the world would be a far better place. A place filled with so much love and happiness.


Saturday, February 13, 2010

CHD Awareness

Congenital Heart Defect Fact Sheet


Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.*

CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications, so it is important for the public to be aware of the signs and symptoms in newborns, and children.

Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".

Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.***

Nicholas was born with Tetralogy of Fallot and Complete Atrioventricular Canal Defect.

Tetralogy of Fallot is classified as a cyanotic heart defect because the condition causes low oxygen levels in the blood, which leads to cyanosis (a bluish-purple coloration to the skin).
The classic form of Tetralogy includes 4 defects within the heart structures:

*Ventricular septal defect (hole between the right and left ventricles)
*Narrowing of the pulmonary outflow tract (tube that connects the heart with the lungs)
+An aorta (tube that carries oxygenated blood to the body) that grows from both ventricles, rather than exclusively from the left ventricle
*A thickened muscular wall of the right ventricle (right ventricular hypertrophy)

Atrioventricular canal defect is a combination of several abnormalities in the heart present at birth (congenital abnormalities). This defect includes a hole between the chambers of the heart and problems with the valves that regulate blood flow in the heart. Atrioventricular canal defect may also be called endocardial cushion defect or atrioventricular septal defect. Atrioventricular canal defect is often associated with Down syndrome. If left untreated, atrioventricular canal defect may cause congestive heart failure and high blood pressure in the lungs. To correct this defect, doctors often recommend surgery during the first year of life to close the hole and reconstruct the valves.

Monday, February 8, 2010

Happy Birthday Megs

I always knew I would have all boys. No daughters for me. I knew how I was as a little girl so I knew I was NOT going to have any girls. When I gave birth to Megan and they said "it's a girl" I was stunned. So it was true...everything you did as a child would come back to haunt you in your own child. I knew I was in trouble.
Megan is everythingI could ever hope for in a daughter. My daughter. She is a little angel. A little spitfire. Half tomboy and half princess.


Her cute little pixie face can make you say yes to anything she desires.

She can beat up her brothers at one moment and make them laugh the next.

This year for her 8th birthday we wanted to make sure it was special. Last year, on her birthday, my husband and youngest son were both admitted to two different hospitals. Stephen had a ruptured and very infected appendix. Nicholas had a bad viral infection. This year we were going to celebrate extra hard...and we did.
We had her party at Bounce U and it was a BLAST!
Our good friend Jenni held Nicholas the whole time so we could celebrate with Megs.
Stephen and Thelma giving me the look "must you take our picture" while Dan smiles on...Thank you Dan!











The boys had enough of the girly party stuff and started a round of thumb war.


Happy Birthday sweet Megs. Mommy and Daddy love you dearly and are so proud of you! I thank the Lord everyday for knowing I needed a daughter just like you.

Friday, February 5, 2010

We've Got Talent??? Part 1

What happens to Daddy after days and days of snow and ice...

Saturday, January 30, 2010

What???

Megan and Brandon are twenty months apart but have acted like they are twins forever. They are the same size, same shoe size, wear the same size clothes and complete each other's sentences.

This is what I woke up to this morning...

Brandon: Megan, are you thinking what I am thinking?
Megan: I AM thinking what you are thinking.
Brandon: What am I thinking?
Megan: What you're thinking.
Brandon: Well, if you are thinking what I am thinking, then let's go do what I am thinking.
Megan: I am SO thinking what you are thinking. Let's go!

Off they went giggling all they way. I still have no idea "what they were thinking."