I love this little boy SO much...

WOW

OK, you can stop the add me emails, because I have received well over 100 emails today!!!!!!!!!! After talking with more people Adam and I have decided to keep the blog public. I know after only one day of the private post we have had such a huge response. Everyone was supportive of us going private. But then I didn't realize that you can only add up to 100 people to your private blog. (My bad, I should have investigated this more before writing a post, I got ahead of myself) Which would be really hard for me to say yes or no to who can and cant read this blog. Also today I have realized how many people Gavin has encouraged. One email in particular brought me to tears and I have never met the woman before. I won't share her name or her whole story but she had a baby about 4 months ago that was preterm and had HLHS, she went on to be with Jesus after being in the NICU for 8 weeks. But for her mom to tell me that Gavin's blog helped her cope with her loss really hit me hard. I realize that if this blog goes private then it will not be able to reach those who are hurting. With that said, this blog won't go into much detail anymore about what we feel is private. Anyway, I would love to hear from more of you and your stories, so feel free to email me ANYTIME! I just didn't imagine that we would get this big of a response. The majority of the emails I received today were from people I had never met or spoken to before. Sorry for the inconvenience of it all and stay tuned for a Gavin post with pictures!

Going Private...

I have been wanting to make this blog private for awhile now. I know there are so many good people out there who read this blog and are praying for Gavin daily, however there are also those who I do not want reading this blog. Now that more of our friends blogs have gone private because of weird comments, I feel it is time for ours to go private too! Please email me at adamandfaithkuykendall@hotmail.com to get added to our private blog. You will have to start signing in with your email address and a password to read...

This if for the Ladies....

Between a cry and a smile
"Hey Girl, how you doin"
Serious GQ pose
"You crack me up!"
The "I am so sweet and innocent look" ;)

Since Gavin didn't have time to send out Valentines to all his special blogger ladies he thought he would give them a shout out (and some special pictures of himself).... Grace, Adalie, Bronwyn, Abby.... Will you Be Mine? Gavin also wants to tell all the other special ladies in his life (family and friends) Happy Valentines Day, I love you all!

I thought I would do a 16 month post and a Valentine post all in one! Gavin turned 16 months yesterday (2-13-08)... He is officially walking and saying more words.

Favorites:

Anything Elmo

Bath time

Books

Riding in his wagon (especially with mommy in there too, and daddy pulling!)

Remotes

Cell phones

Closing the dishwasher after it is loaded

Attempting to help fold clothes (actually he unfolds them, but he thinks he is helping)

Dancing

Favorite Foods (for the moment, it will change next week):

Beans!!

Pears

Milk

Strawberries

Canteloupe

Watermelon

Avocados

Chick-fil-a Chicken Nuggets

Yogurt

Apple Cinnamon Cherrios with milk!

Steamed Broccoli

And of course anything sweet!

Words:

Ba- Ball

Barbara

Nana (with a strong hick accent)

Me-Mimi

Pa- PaPa, PePa

Mm-pa- Grandpa

Ta-Ta- Aunt Tara

Kiiii (with lots of spitting)- Aunt Kristen

Yawn- Uncle Jon

Mama

Dada

Mmmm- milk or more

Bubba-Kyle

Yun-Yin-Londyn (little girl at church, he has grown fond of)

We are working on all the other family member names, however they are a little bit harder!

On the last post, there was a poem left under the comments. Thought it was very cute and thoughtful. It needed to be a part of the Valentines Day post. Thanks 3-Pa!

[To Adam & Faith & the Baby Makes 3> a Valentine's card]

(Rocky My Hero)

I used to think this day was lame

Then months ago along came

This thing that made me hide my shame

Now my life can never be the same

Tis a boy, that's for sure

Everybody prayin for a cure

Valentine hearts

They're the symbol

Of the need

That makes this family tremble

With God's love, it's for sure

Adam and Faith will endure

It's by their witness, we all enjoy

The strength that's shown

By their little boy

If you were weak or lame

Rocky is not what I'd name

So, I'll not stand and whine

Will you humble me and be my Valentine

XOXOXOXOXOXOXOXOXOXOXXOXOXOX

3-Pa

Sammy and Cardiologist Appt.

Tomorrow (Thursday), Sammy (HLHS_see link on right of blog) is having his Pre-Fontan heart cath. Sammys mom Erika is the very first mom who contacted me after reading my old blog when I was pregnant and found out about Gavin's condition. She was also one of the first people I talked to right after giving birth to Gavin. She has prepared me for a lot of what we would experience. Sammy is about 10 months older than Gavin and so he is always a step ahead of Gavin in surgeries/caths. Please keep this family in your prayers!

Friday, Gavin had his cardio appt in OKC. The cardiologist said to prepare for Gavin's heart cath to be a year from now, and the heart surgery should follow shortly after. We have mixed feelings, we want it over but we are also excited that we have another full year without long term trips to OKC. So here is to a year of health for Gavin!

A Year Ago Today...

I can't believe that it has been a year since Gavin's second open heart surgery! It was a tough surgery and a never ending two weeks, he has come a long way since then...

Heart Walk 2008

Dear Family and Friends:

Some of you have already read this through the email I sent out, but for those that I do not have an email for, please read below!

OKC HEART WALK 2008
Saturday, April 19, 2008 @ Bricktown Ballpark

That's right, it's that time of year again! We are gearing up for the 2008 OKC Heart Walk. We had a great time last year, we had a lot of family/friends turn out to walk as 'Team Gavin'. Gavin's heart surgeon, cardiologists, nurses and other medical staff attended the heart walk. It was an amazing experience and we are pumped to walk again this next year.

As most of you know, Gavin was born in October of 2006 with a very rare congenital heart defect, Hypoplastic Left Heart Syndrome and other heart defects. HLHS is one of the most complex cardiac defects seen in the newborn. In a child with HLHS all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped. Treatment involves 're-plumbing' the heart to allow the right side to do the work normally done by the left. Therefore, Gavin only has one ventricle, the right, and it does all the work. This treatment is done through a series of three surgeries. There is no long-term prognosis for the series of surgeries since the oldest children who have undergone them are only in their early twenties. Some children with HLHS eventually will require a heart transplant. Gavin has been through two open heart surgeries, heart caths, suffered a minor stroke, CT's, MRI, EEGS, weekly doctor appointments, physical therapy, speech therapy, home health care and more. This little boy is an ABSOLUTE MIRACLE and we are blessed with his smile everyday! Because of the American Heart Association, Dr. Peter Pastuszko, OKC Cardiology Team, Nurses and Staff at The Children's Hospital in OKC, Gavin is able to receive the best of care and is now a healthy and happy 1 year old! Gavin has had a tough journey in his short life, but he is a true fighter. God has blessed us and used us in so many ways because of Gavin's condition!

We are supporting the Oklahoma City Heart Walk as our way of saying Thanks for all the hard work that the AHA and doctors do in order to save the lives of many others just like Gavin! This is our second year to participate in the OKC Heart Walk. There are lots of other children with Congenital Heart Defects, the NUMBER ONE birth defect! So please help us in making awareness not only about HLHS but Heart Defects in general. We are creating a team of walkers TEAM GAVIN to help us reach a goal for the American Heart Association Walk. We know that not everyone will be able to participate with us but we wanted to invite you to visit our web page by clicking the link below. If you would like you can make a donation in honor of Gavin on his personal web page or you can just join us for the walk. Please do not feel obligated---we truly just wanted to share our project, which we are doing in honor of Gavin with you. We plan to put our 'hearts' into this yearly. Any amount would be greatly appreciated...However, there is an online minimum of $25.00 amount required so please feel free to email us for home address to send other amounts. Please feel free to pass this along to your friends and family members. Thank you to all of our 'heart' supporters out there! We love all of you and God Bless.


Adam, Faith and Gavin

Slide Show of Heart Walk 2007

Heart Awareness Month

February marks CHD Awareness Month. This month means more to me then it ever has. So many people look at Gavin and never even know that there is something wrong with him. And let me tell you, I am thankful for that. I feel like it makes him more normal to look normal. But everyday is a battle for me and for Adam. Living with a child with a heart defect is an emotional challenge. I got this post from some of our heart support group, it says it all...

What does it mean to be the parent of a child with a heart defect?

What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check to see if he's still breathing. It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear him breathe. It means that when you don't see the chest move and you don't hear him breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger until you wake the baby and it stirs and you're thankful, so thankful that he's still with you.

What does it mean to be the parent of a child with a heart defect?
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles. It means saying a prayer of thanks for another day.

What does it mean to be the parent of a child with a heart defect? It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you'd overmedicate him.

What does it mean to be the parent of a child with a heart defect? It means checking his nail beds against your own to determine how blue he is today. It means asking your husband, your mother, or your sister, "Do his lips look blue to you?" It means snuggling him in an extra blanket for fear he won't be warm enough.

What does it mean to be the parent of a child with a heart defect? It means worrying that even a sniffle could cause an infection that could harm his heart. It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls her name and takes you straight back to the examination room.

What does it mean to be the parent of a child with a heart defect? It means knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world, just to be a parent. It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.

What does it mean to be the parent of a child with a heart defect?
It means praying for a miracle to save your baby's life. It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief. It means praying for the will to live, even if your baby doesn't.

What does it mean to be the parent of a child with a heart defect? It means your own heart knows a pain, no parent should know. It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands. It means feeling strong, determined, and brave because you know you have to be.

What does it mean to be the parent of a child with a heart defect? It means your love knows new unlimited boundaries. It means your pride in your child's accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion than you ever imagined.

So What Does All Of This Mean?
It means we are all united by the same feelings. It means that we all know the mixed up emotions of dealing with death, but more importantly of living with life. It means that even though we are strangers, we are more to each other than friends could ever be.


author-- unknown....


**If you can try to get out and donate blood this month, so many heart patients need blood transfusions and it's a great way to give to those in need**

That's right he is WALKING!

Gavin started officially walking, at all times, last Monday. We are so proud of him! He gets so excited when he walks that sometimes he starts running and face plants. He also likes to scream and clap once he has walked for awhile. Especially if you didn't notice him doing it! Gavin's home nurse/physical therapist are so proud of his big accomplishment. They also think he is very smart. We think so too! He sits long enough to watch the Elmo segment in Sesame Street, but after Elmo is off he wants nothing to do with it! He has formed a love for Elmo, he got the Pizza Elmo from his cousins in Arizona and he has two Elmo books. He got an Elmo bib from his Aunt Tara, but he just likes to look at it and scream Elmo at the top of his lungs. (It sounds more like EEEEEEEMO)

Gavin experienced his first encounter with snow today. I took him out long enough to take two pictures and then we were back inside. It was way to cold!!! He screamed when the snow was falling on his gloves and he was trying to put some in his mouth. He really enjoyed the snow.

Update on Atticus

A couple of posts ago I wrote about Atticus (heard about him through Hunters mom), well today he received a new heart and as of right now is doing well. God is good!!!! Please keep Atticus and his family in your prayers, along with the family who lost their child and is giving Atticus a new life.

Shoguns

Last month Gavin experienced his first trip to Shoguns. Shoguns is a Japanese Hibachi Restaurant (they cook the food in front of you). We went with Gavin's Nana, Grandpa, Aunt Kiki, Bubba and The Montgomery's, very close family friends. We have had a Christmas meal and exchange gifts with them since as long as I can remember. Our families met when their oldest daughter and I were toddlers. They are among Gavin's many prayer warriors, and Mitzi has spent many nights with us in the hospital with Gavin. They are a very special family! Here are some pictures from the evening.....
We were a little hesitant about taking Gavin because of how long it takes to prepare the food and to eat. However, Gavin had a blast. He laughed, clapped, screamed and threw his hands up, especially for the fire!

15 Months Already???

Time flies... I say this a lot. I just can't get over how big my "baby" is getting!

Gavin's Favorites:

*Books

*Itsy Bitsy Spider

*Attempting to repeat everything you say

*Picking at my "moles"... he says mole and picks at it!

*Dancing

*Swinging his hand in the air when we sing songs in Church. He has watched the song leader do it, so he feels the need to do it too.

*His Daddy!!!

*His new "Pizza Elmo"

*His new wagon

*Cell Phones

*Remotes

*DVD player (which he has already broken from opening and closing it so many times)

*Music

*Purses (Adam doesn't like this one)

*Tickling other people

*Looking at belly buttons

*Bath time

Gavin's not-so-favorites:

*Walking

*Getting his nose wiped (has had a runny nose for awhile)

*Diaper changes

*Clothing changes

*Riding in the car

*Getting his hair fixed (he wants to do it himself)

Gavin has such a sweet personality, he is learning more and more everyday. He loves to "talk" and watch other people. He really is a good baby and we are blessed to have him as our son!

Maddie and Atticus

There are two more children I have added that need your prayers! The first child I found out about through Maxs Mom. Maddie was 2 when she was diagnosed with cancer. Her family has now been told that there is no more treatment available for her at St. Judes. They are now at home spending precious moments with her. Please visit her site and keep her in your prayers.

The second child is Atticus (found out about through Hunters Mom). Atticus has HLHS like Gavin. Atticus had his third open heart (Fontan) and is not doing well. He has had lots of ups and downs with this surgery. They are trying to make decisions right now for him to have a Heart Transplant. Please keep him in your prayers!

2008...

Well, let's just say we are THANKFUL it is a NEW YEAR! 2007 wasn't the best year for us. We had a lot of ups and downs emotionally, spiritually, physically, financially. However, we can honestly say we would do it ALL over again. Why? Because Gavin is still with us and that's all that really matters. When I look back at what Adam and I went through the last year it doesn't really compare to what Gavin experienced. Within the last year in a half our son has had two MAJOR open heart surgeries, a stroke, spells, several heart caths, EEGS, MRI, CT, ER visits, hospital stays, physical therapy, speech therapy, doctor appts. and so on... We are amazed with his strength, his endurance. And just to think he has to go through a lot of this again and again through out his life. Looking at Gavin makes all the other "issues" in life seem so small. With that being said, I pray that 2008 brings another year with Gavin! May you all be blessed in the New Year!

Have Yourself A Merry Little Christmas!

Since I am way behind on Christmas wrapping, card sending, etc. this will be short and SWEET! I thought I would do a quick post of Christmas last year and Christmas this year. What a difference a year makes!!

May you all have a blessed Christmas and New Year!

Love, Adam, Faith and Gavin

14 Months

Gavin is growing up so fast! He has become quite a mimic lately. Every thing we do he tries to do or say. Example:We have lots of hand sanitizer bottles/wipes laying around our house. In particular we have a rather large one we keep on the ottoman for a quick hand wash. Gavin has observed us "washing" our hands and started to do it himself. He goes up to the bottle (he can't reach it) acts like he pushes the dispenser and then begins to rub his hands together.

We have started really working on names with people. We have a picture book with family members/grandparents and we point and say their name. But in person I always put my hand on my chest and say "Mama". So Gavin puts his hands on his chest and says "Mama". I laugh every time he does it, so he has started doing it more often. We are working on correcting that, but oh well its too cute!

Weeks ago, Gavin was trying to pull the outlet covers out. I tried to remove him from it and distract him with something else, however, he always goes back. One day I had to tap his hand and tell him "no, we don't touch, that will hurt you". It didn't phase him at all. He went back to the outlet and took one hand and slapped the other and said "no, no". ;)

The other day Gavin was looking at a book and he just started laughing. Gavin has NEVER laughed much. He smiles a lot just no noise with it. It melted my heart to hear him laugh!

Gavin is IN LOVE with his Daddy. I do not exist when Adam gets home. So when Adam is at work I try to enjoy my cuddling time with Gavin.

Here are some pictures of Gavin when we attempted to get a family Christmas card picture. We have a cute one of himself we decided to use instead. Happy 14 months baby boy! We love you!

Starting to get mad...

Fists Clinched

"OK, now I am REALLY ticked!"

(I think Gavin's temper tantrum messed the camera up, we considered using this one if it wasn't so blurry!)

*Adam changed clothes during the photo session, hince the different shirts...*

"Ho, Ho, Ho"

Gavin met "Santa" for the first time a couple of weeks ago. Gavin calls him "Ta" and attempts to do a version of "Ho, Ho, Ho". No tears for Gavin, but you could tell he was trying to figure this guy out! He just stared at him and wouldn't look at the camera for a picture. So I guess our first official Santa meeting was a success!

Baby Ella

Maxs mom posted about a baby that needs our prayers. Baby Ella was born with type 1 diabetes (one in a million odds). She weighed 4 1/2 lbs. full term. I am adding her to my list of children who need prayer. Her website is http://www.elladozier.com/

Please keep Baby Ella and her family in your thoughts and prayers!

My Boys...

Adam is one in this picture, Gavin almost one.

To Adam...

Happy 3rd Anniversary to my BEST friend. I LOVE YOU!

So Much to be THANKFUL for...

Happy Thanksgiving... This video shows exactly what I am THANKFUL for this year and every year...

Happy 19th Birthday Aunt "KiKi"!

Hope your day was EXTRA special and you enjoy your NEW car!

I love you, Gavin

13 Months

(Eating SUGAR FREE pudding for the first time)

I can't believe it has already been a WHOLE month since your FIRST birthday! Some facts about Gavin at 13months:

Length: 29" (25%)
Weight: 20 lb 2 oz (10%)
Head: 47cm (75%)

You can say:

*Dada

*Mama (only when we say "BummmBummBum" for some reason it makes you say Mama)

*Barbara

*Pepa

*Nana

*Pa (for Papa and Grandpa)

*Ball (when you see football on TV or you see a ball)

*YaYaYa

*Falalalala (we got a children's Christmas sing along CD, he likes Deck The Halls)

*Ahhh (after you take a drink)

*Moo

*Arf Arf (for a dog)

*You love to scream as loud as you can

*Amen (said it in church when he heard other people saying it!)

*Dog

Things you do:

*Cry when Dada leaves, you crawl to the door and bang as hard as you can and scream "Dada, Dada"

*Touchdown Signal

*Point to things you want

*Clap

*Patty Cake

*Sing along when others sing (make sounds)

*Walk around the furniture, however you would much rather crawl

*Dance to music

*You have decided that night time is not sleep time, it's play time, even at 230 in the morning!

Gavin,

Each day makes me realize you are not an itty bitty baby anymore. You have become much more independent, with playing and eating. You love to "explore" the house. You like to see how many times you can get into stuff you are not supposed to before you get removed from the area. You are such a joy and we love you more and more...

xoxo Mama and Dada

We Are Home!

Just so you all know, Gavin was discharged Thursday night and we have been home resting! You do not get much sleep in a hospital! The EEG showed no signs of seizure activity, so we are thankful for that... the main concern right now is Gavin's heart rate when he sleeps, we should hear from the cardiologist this week. We have an appt. with the neurologist with in the next three weeks. Please continue to pray for Gavin as he will have more tests/evaluations for the enlarged ventricles in his brain and for his heart! Thanks again for all the prayers, phone calls, and visits!