Jeff's Golden Birthday

Last Saturday Jeff celebrated his 29th birthday on the 29th of January. We had his friends over for a poker party to celebrate his special day. We spent most of the day cleaning and re-organizing to fit in two large poker tables in our quaint living/dining room. I made lots of food for Jeff's special day: chicken tortilla soup, a big sub sandwich, tortellini pasta salad, a veggie tray, and artichoke dip. Some of our friends also brought cookies and rice krispy treats so there was plenty of food for everyone.


The birthday boy and his baby girl

We started the game around 7:00 p.m. and the last people didn't leave until 3:00 a.m.! It was so nice to see everyone and Jeff really enjoyed himself.


With it being cold and flu season we thought it was best for Nicholas to hang out in his room and watch some DVDs and he was perfectly content to watch some of his favorite movies with his stuffed puppy pal, Henry. Lots of our guests stopped in say hello to him which made him very happy.

Unfortunately, luck was not with Jeff on his birthday because he didn't end up winning the poker game, but he had a great time socializing with his friends after he lost all his chips.
In fact, Jeff and Kris started their own game of Scrabble on the iPad...

and played with Ella.

Jeff's very best friend Jordan, was in town from Australia and Jeff was so happy that he came by to help celebrate his birthday. Ella was just excited to taste his jacket :)

Happy birthday, honey! You are the light of my life and the joy of my heart. Cheers to the last year of your 20's!

iPad Apps for Kids

Nicholas has really been enjoying playing games on the iPad that Jeff bought us for Christmas. The bigger screen is great for him to see all the graphics and he asks to play a game or two everyday. I just wanted to share his favorite apps with our readers in case you are looking for fun games for your child(ren).

• Virtuoso (a piano app)
• Fish School (Duck Duck Moose)
• Itsy Bitsy Spider (Duck Duck Moose)
• Wheels on the Bus (Duck Duck Moose)
• Handy Manny Workshop
• iTot Cards
• Peekaboo Wild & Peekaboo Barn
• Drum Kit XL
• Toddler Phone
• Match Animals
• Talking Hippo
• Old McDonald
• Doodle Buddy
• Emotions Flashcards
• Angry Birds
• Can Knockdown
• Cooking Mama Lite
• Netflix

*obviously Netflix isn't a game but Nicholas loves to watch Kipper and his other favorite cartoons and movies

Comfort

Every morning when Nicholas wakes up we do what we call his morning treatment. His treatment consists of breaths from his cough assist machine (which helps him cough up any loose mucus that accumulated during the night) and his suction machine which helps to clear out that mucus.

Some mornings Ella is awake before Nicholas so she joins me for his treatments. Yesterday morning this was the case and I laid her on Nicholas's bed next to him. She always watches what I do and likes he hum of the machines. Yesterday, however, she seemed to be aware of how distressing the whole process is for Nicholas. She rolled on her side and looked at him and then grabbed for his hand. She held it tucked right against her cheek until his whole treatment was through. That simple gesture of comfort brought a tear to my eye. I can already see that she is such a loving sister, and I could not ask for a better sibling for our son.

Novena Prayer

I received an email today from my cousin letting me know that a few of my family members have been saying a novena for Nicholas. A novena is nine days of prayer for a special intention. They told me that instead of saying this prayer for just nine days, they will be praying it for nine months. Now that is what I call dedication! I thought I would share it on our blog in case other people are interested in praying it for Nicholas or anyone who is sick:

Healing Novena

To Christ the Great Physician

We know that there is one physician:

Both flesh and spirit

uncreated, yet born

God in man

True life in death

From both Mary and From God

Subject to suffering and then impassible

Jesus Christ our Lord!

We ask O Great Physician, for spiritual, physical, and emotional healing, especially my intention of ______.

You of both flesh and spirit

May we spend all of our days in your healing presence.

You the eternal Son born for us

Grant us the healing benefits of your Incarnation, Death, and Resurrection

You who are true God and true man

Grant us your true life in the midst of death

You, the true life in death

Grant us to follow your example and that of your Blessed Mother

You, from both Mary and from God

May our suffering be for our growth; free us, we pray, from that which we cannot bear

We ask You, O God the Word who became man to suffer

We ask you to grant us this healing if it brings us closer to you,

Jesus Christ our Lord!

*from the Letter of Ignatius to the Ephesians, VII.

Note: This novena can be used individually or with a group. The bolded responses should be said even by individuals. A novena is a method of continual and fervent prayer. Usually it is for a period of 9 days or 9 months. Novenas are excellent prayer tools, and we employ them frequently. However, the Church emphasizes that we not attach a superstitious power to the number 9. The Novena is simply a method of determined prayer.

Written by David Bennett

Eyes Toward Heaven

These images are just a few of the many we have of Nicholas looking toward Heaven. Sometimes when he is alone in his room I will peek in on him and he is looking above his head and talking away. During these times I can only imagine what his pure soul sees. I like to think he is chatting with Jesus about his favorite parts of the day or telling his guardian angel thank you for never being too far away. He is closer to Heaven than many people, as I believe all young children are.

Today was a deeply spiritual day for me. It was a day that I spent reflecting on the meaning of life. I know that each person is sent to Earth to experience, to feel, to love...and I believe at the end of that journey we stand in front of God and view our life...the moments in which we found compassion for a fellow human being, the moments in which we struggle with our faith, the moments when we give into temptation, and the moments when we love with our whole hearts.

I know with every fiber of my being that my son was sent to us from God. I know that he will go straight back to God when his time here is through. I know that he is here for many reasons. One of those reasons is to teach me what life is all about. I don't have all the answers. I don't know more than any scholar or any person of faith. But here's what I do know, here is what I have learned so far by Nicholas's example...

Life is about love. It is about loving one another so deeply that we let go of all the temptations the world has to offer. It is about caring for one another. Not just people we know, perfect strangers as well. We are all connected as God's children. Everyday acts of kindness are the simplest ways to show our love for others. Life is about time. How we spend our time and what we do with it. I know that our time with Nicholas is limited. I know that every. single. second. I spend with him is a moment I will never get back. I choose everyday to make those moments count. I choose to make those moments the most wonderfully silly your-heart-feels-so-happy-you-could-burst for Nicholas. I want him to know how infinitely he is loved today and I want him to be able to take that love with him when he leaves us. Life is about charity. Charity for those who need it. A reassuring hug from a friend. A smile to a co-worker who is having a rough day. Praise for a job well done. Dinner taken to a sick family member. In our whirlwind society charity is often overlooked but never goes unappreciated. Life is about stopping to enjoy the beauty that is all around us. The beauty of a grandmother's memories, the beauty of a perfect sunset. The beauty of a child's laughter. We are surrounded by beautiful things. Taking the time to appreciate and acknowledge them is what life is all about.

My son has taught me more about life in his two & a half years than more people learn in a lifetime. He has taught me unconditional love. He has taught me compassion for people who are disabled or in need. He has taught me that life is short and how we choose to live our lives while we are here will always be remembered by those people whose lives we have touched. I only hope that in my life I can be half the example to others that my child has been to me.

"Life is not measured by the number of breaths we take, but by the number of moments that take our breath away."

A Day in the Life of a 4-Month-Old

Here is a peak into little Ella's life... Good morning!
Bath time



Toweling off after bath

Trying to roll over...she hasn't perfected it yet

Num-num...she loves to suck her thumb


Play time
Swinging...ready for a nap
Up from her nap... jolly jumpin'


Face time with mommy


Baby girl ready for bed. Night-night everyone!


Ella had her four-month check-up and she now weighs 15.2 lbs and is 25 and 1/4 inches long which puts her in the 90th percentile for both height and weight. She is probably going to outweigh her brother in a few months. It amazes me how much she grows and changes everyday! She loves to grab for things, she makes all sorts of cooing and vowel sounds, she loves to jump and play, and just started rolling over. She just found her thumb and started sucking it regularly to soothe herself and can easily put herself to sleep now. She enjoys being near Nicholas and smiles and coos at him. She continues to be an excellent sleeper and is sleeping 6-8 hours at night and takes two or three naps during the day. She giggles all the time and loves when we interact with her. She is truly a blessing and a wonderful gift from Heaven!

Soothers

Both of my children certainly have their preferences when it comes to their method of soothing...

Nicholas prefers his "bink" and Ella is now a thumb sucker

Whatever brings them a sense of comfort is okay with us!

Then & Now

Bath robes are so not practical for a baby, but I love them! They are so cute and while neither of my children wear them for very long after bath time, they are certainly picture worthy. I love these photos of the kids...same chair, about the same age, same big smile. They certainly resemble each other, don't you think?

A Lot of Love

Brother-sister love Gramme love

Grand kid love

Baby love

Daddy love

There is a lot of love in this house!

Feeling Pretty Darn Good

Nicholas felt great today! Yesterday and today were the first two days in the last month that he has really, truly been feeling G. R. E. A. T. and we couldn't be happier! He has completely adjusted to his new AA diet and is thriving on it. This morning during therapy with Julie he was talking so much and so excited to see her and she commented about how she could easily understand his language and she was so happy to see him doing so well. His stats have been awesome-his oxygen levels between 95-99 and his heart rate between 125-138 when he is awake. When you have a child with a terminal illness who has been feeling really crummy for weeks on end, you start to feel like it might be the beginning of the end. Now we are starting to feel the opposite-that our child may be getting rid of the yucky sickness that has been plaguing him and starting to become his normal joyful little self again.

I also attribute his healing self to the prayers we have started saying each night as a family. The four of us gather together in Nicholas's room and thank God for watching over us and ask him to help Nicholas to feel better. I truly think the power of prayer can be amazing! Nicholas's two new favorite phrases are "love you" and "Amen."

You can see in the photos above how much he is enjoying playing with our new iPad. I downloaded quite a few new apps for him and he is in heaven exploring and learning new things. He really loves a fish app that we have that sings the ABC song, he sings along and it's adorable! He also likes the new drum app we downloaded. It was worth every penny to see our boy so happy!

Owly Baby

Yesterday Ella received her knitted owl hat that I ordered for her from Beb-e-ssentials. Isn't it the cutest thing? You can click the link above to order one for your child. They also make adorable hair clips, and if you purchase the Gwendolyn Butterfly Clip a portion of your purchase goes to the Gwendolyn Strong Foundation to help with SMA research.