Happy Halloween!

Cutest Dalmation Ever!

Firefighter Reed and his side-kick

Earlier this month, we were excited to see Ramsey's buddy Ryan and his parents at Hallowboo! Ryan and Ramsey were "roomies" for a few days at Children's Hospital.

Feeling better

Ramsey is starting to feel better everyday and good news, it is not RSV!

Let's Beat This!

Ramsey has been sick off and on since early September. Tomorrow marks a week of fighting his second virus this month. He is being tested today for RSV. Results will take a day or two. We have been monitoring him closely and giving him abuterol as needed to increase air flow to the lungs. Whatever this is, I just want him to beat it and fast!

Smile!

I know I've mentioned it before, but there's just something about Ramsey's smile. I've heard many parents of CDH kids say the same thing. Recently, I came across a CDH survivor who not only shares that same bright smile, but she recreates them too. Laycee Renae Haines is an artist who puts a smile on the face of each subject, and each admirer of her artwork. Her mission? To make people happy! Laycee adds an extra-special touch to portraits of those who have joined their Father in Heaven- a bright yellow sun. Why you might ask? Because, Laycee says, "When you go to Heaven....you get a sun."

You can view Laycee's artwork at her Facebook page, Laycee Originals.  She would LOVE for you to "LIKE" her page and she especially enjoys fulfilling orders for portraits. I ordered portraits of Reed and Ramsey and they now decorate our once empty playroom walls! I smile each time I see them!

Laycee's artwork in her orthopedic surgeon's office

Reed's Portrait

Ramsey's Portrait

Here's Laycee's story as shared on her Facebook Page:

Laycee was born with a congenital diaphragmatic hernia (meaning her diaphragm did not form completely, allowing her organs, including her liver to move up into her chest). This particular defect occurs in approximately 1 out of every 2,500 births. Only 50% of infants born with CDH will survive to go home and, many of them will have health problems throughout their lives. Because of her CDH, Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.

The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."

Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.

Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 300 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.

Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).

Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul.

God Blessed Ramsey

On Saturday, August 20, Ramsey was baptized for the second time; he's been blessed since the day he was born. After his CDH diagnosis, we knew we wanted him baptized right away. Granted, he was always in God's hands, but there was something reassuring about knowing he was baptized.

There is such a contrast between those two baptism days. The first was the day Ramsey was born. He was frail...not breathing on his own...we had just been told he would likely die. I can't allow myself to fully remember the emotions of those moments, however they affected me so deeply I will never be the same. I suppose it's because I believed those words to be true, and began what I thought was the start of a grieving process. I am sorry that for those brief moments, I lost faith in his survival.

Fast forward seven months to a happier time! Ramsey is smiling back at me as his godmother and I dress him for his special day (but aren't they all special?)! We celebrate with a private service, the priest wearing his special attire which he feels is necessary to honor our miracle. I am overwhelmed with a sense of joy and relief. Even though I thought I would surely break down in tears, only a few escape me. Life is good.

Special Thanks to Father Stephen who prayed with and encouraged us, even before Ramsey was born and who welcomes me and my United Methodist faith into his church (he used to be Methodist too). Thanks to Ramsey's wonderful and gracious Godparents for their friendship and love. And thanks to all of our family and friends who celebrated in person, and in spirit. It was a special day!

Ramsey being baptized the first time, on his birthday.

Getting dressed for his big day!

How do I look?

Proud mom and dad!

Godparents, Jamie and Gina

Ramsey brings a smile to Father Stephen!

Reed's not up for pictures today!

He'd rather play!

God Blessed Ramsey.

I can't complain

Last week added a new challenge to an already difficult year; Reed broke his leg! While it certainly makes things a little harder and I'm sure people will question why I have one son in a helmet and one in a cast, how could I complain? I am blessed to have both of my boys to hug and squeeze each day. Soon, Reed's leg will heal and given time, Ramsey will cease to wear his helmet.

Ramsey had a checkup today with his surgeon from CHP and the report was great! His diaphragm, (although somewhat curved) looks better than it did the last time. Lung growth also looks good. She cautioned us that this winter could still be rough on him. We are to bring him to the ER at the first sign of sickness or croup. Reed starts preschool so preventing the spread of germs could be a real challenge. We agree with her advice to give preschool a try; if the boys keep getting sick, we may need to keep Reed home. If nothing else, we could send him during the warmer months and keep him home for the winter. I trust that we'll know what to do when that time comes.

Within the last two weeks, the CDH community has suffered the loss of too many babies. I believe there were at least 7 children (that we know of) that earned their wings. My prayers are with each of their families. I wish there was some way to alleviate their pain.

Just in Time

Ramsey got his helmet last week, just in time for Steelers Training Camp. I'm sure if we took him to Saint Vincent to watch one of the practices, somebody would ask where we got it. The helmet is intended to correct his Plagiocephaly, a big word that means flat head. We chose the camo pattern, but many people do decorate them like a football helmet. Some samples we were shown include a tire, with the words, "Fixin' my flat" and watermelon slices on a helmet that says, "Don't touch my melon".  I do have plans for the helmet which you'll have to wait for...nothing that funny, but something just perfect for Ramsey. It's surprising how the helmet is already starting to correct the shape of his head, it is starting to fill out in the back! Luckily, although he wears it 23 hours a day, he doesn't even mind.