Sunday, December 25, 2011

Santa's in the House!




Merry Christmas!

Wednesday, December 21, 2011

Breath of Heaven

Did you ever notice how your life experiences affect the way you interpret certain songs? Breath of Heaven tells the nativity story from Mary's perspective. When I listen, I hear the story from my perspective. I am taken back to last Christmas when I was still expecting Ramsey. Like Mary, I wondered why I was chosen. I felt honored that God had selected me to have such a special child. Although Ramsey's fate was uncertain, I knew I would be provided the strength to handle the journey. I was frightened, but God held me together and ultimately, he presented Ramsey with the best gift of all...the Breath of Heaven. I thank Him for every blessed breath he takes.




Breath of Heaven Lyrics:

I have traveled
Many moonless night
Cold and Weary
With a babe inside
And I wonder
What I've done
Holy Father
You have come
Chosen me now
To carry your son

I am waiting

in a silent prayer
I am frightened
by the load i bear
In a world as cold as stone
Must I walk this path alone
Be with me now
Be with me now

[chorus:]

-----------------------------------
Breath of Heaven
Hold me together
Be forever near me
Breath of Heaven

Breath of Heaven

Lighten my darkness
Pour over me, your holyness
For your holy Breath of Heaven
-----------------------------------

Do you wonder

As you watch my face
If a wiser one, should of had my place
But I offer-all I am
For the mercy-of your plan
Help me be strong
Help me be
Help me

Wednesday, December 7, 2011

Today's Appointment with Neurosurgery

I feel much better after today's appointment!  We met with the chief of Neurosurgery at CHP about Ramsey's spinal anomaly. He said he wanted to see Ramsey today to evaluate him as a basis for monitoring him. If it wasn't for the CT scan, he said he wouldn't have suspected any problem. Children with a fusion such as Ramsey's (C1 to skull) often go without any treatment. In other cases, surgery is needed. We will follow up with neurosurgery a year from now to have them reevaluate Ramsey. In the meantime, if we have any questions or concerns we are to call them. The potential problem is that as he grows, there could be a curve in his neck causing his head to lean to one side. From what I've read there could be other issues such as headaches or limitations like avoiding contact sports. Obviously, those issues would years down the rode. Now, all is good and that makes me very glad.

Tuesday, December 6, 2011

Blog Stew

In this jumbled head of mine are many things that I've been meaning to blog about. Since I'm way behind, please enjoy my "blog stew" packed with hearty news and sweet photos.

Thanksgiving
This was the best Thanksgiving ever! It was a rough year on many levels, but in the end, what matters is how blessed we really are. We celebrated the day with my family as well as my husband's family. It's always a busy day driving from place to place. I always feel like there's not enough time at either home, but really it's a good problem to have. So many are alone and/or mourning the loss of those they care about over the holidays. I thank God that nobody was absent from our day, especially Ramsey. 

Reed and Ramsey, Thanksgiving 2011

I will not show you my new teeth!

Look at me go

Tyler is Home!
Thanks to each of you who prayed for my cousin's son, Tyler, who also has CDH. Tyler is now happily spending his time at home with his parents. Once again, we thank God for his blessings. We are fortunate that he and Ramsey both made a great recovery. I'm looking forward to the day they can meet and we can take photos of our superbabies together! 

Ramsey's Milestones
As you can see in the photos above, Ramsey is done wearing the helmet. He had to stop wearing it due to the spinal anomaly that was just discovered. Fortunately, it rounded out pretty well and should continue to even without the helmet.

Ramsey is quite the mover these days. He has mastered the army crawl. He can rock back and forth on all fours, but hasn't gotten the hang of crawling with his belly off the ground. His PT is working with him to strengthen his stomach muscles. 

Our little guy finally has teeth! The first two appeared the day after Thanksgiving, one on top and one on the bottom (too bad they don't meet)! His other front tooth is just about ready to make its appearance. Maybe next he'll grow some more hair - LOL. Dennis says he has the opposite of a comb-over because it all sweeps forward.

Our Calendar Boy
Ramsey is featured on two calendars that not only raise awareness, but they benefit their respective organizations. Breath of Hope's 2012 Faces of CDH calendar features Ramsey on his birth month, sporting his superman cape.  I believe Ramsey also appears in CHERUB's calendar which features over 1050 children and adults born with CDH. There are so many kids, I couldn't find him!

Breath of Hope 2012 Faces of CDH Calendar
  
Baby Jude
A great thing about the CDH community is the support we provide one another. Rose Morrison delivered her son Jude today. Please prayer for baby Jude, Rose, her husband Brian and their daughter Annabelle as they begin this difficult journey. You may visit her blog at http://babymorrison2.blogspot.com/.