Santa's in the House!

Merry Christmas!

We are Joyous!

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

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.

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/.

Perfect Peace

Believe it or not, there were benefits to Ramsey's hospitalization. One of those was making new friends. Liz is one of those special friends. Today, Liz wrote a verse on her blog (A Very Special Case), "I will keep in perfect peace he who trusts in me. Isaiah 26:3".

Yesterday, I was not in perfect peace. Today, I am working on it. Ramsey had a recent checkup with CHP regarding his torticollis (the stiffness in his neck that caused the flat head and necessitated the helmet). His head is rounding out well in the back, but it is now a bit "long". A CT scan was ordered to rule out that "one percent" chance that something was causing the lengthening of his head. Yesterday, we got the results. His brain looks good! There is a cyst but it is benign! They didn't find anything they were looking for, but they found something else. 

Ramsey has a spinal anomaly. His skull is fused to the C1 vertebra (the top of his spine). Also, the C1 is smaller than it should be.  I was referred to Neurosurgery where I set up the first available appointment on December 7. I asked for someone to talk to, someone who could explain what this might mean for Ramsey. I was told I could talk to someone but they wouldn't be able to answer any questions until our appointment. I was left to make the only illogical decision we all make- googling. I found some scary info which, in hindsight was probably a worst-case scenario or perhaps an unreliable source. After panicking, I googled again. I found people who discovered a skull/C1 fusion decades into their life, after headaches began.  I found lists of other symptoms that, although undesirable, are less worrisome than what I originally thought.

I was advised to remove the helmet and to stop doing any types of therapy on his neck. They feel his head will naturally continue to round out on its own. As far as the length of his head, that's still unresolved. We are having another scan to take the current measurements. I believe that's just how his head was meant to be shaped. Our family has long heads. His head wasn't meant to be round.



Today, I talked to our awesome pediatrician who always knows just what to say. I asked her about the fusion. She said Ramsey might face limited mobility or headaches. If he needs surgery, she said it would be a mild surgery to release any impingement. This is just her observation based on my information, but at least it's something. 


It's ironic that they even found this issue so I am thankful that they did. I will pray that if he needs surgery, that it is an easy surgery. To me neurosurgery doesn't sound like it would ever be easy (guess that's why I sit behind a desk all day). 







 

Tyler Update

Baby Tyler had his surgery yesterday and he is doing great! We're praying for a quick recovery.

Is CDH Genetic? Pray for Tyler!

Today I have a prayer request for my second cousin's son, Tyler. Tyler was born almost a month ago and was admitted to Children's yesterday where they determined he has CDH. Apparently, the defect is a small one which allowed him to do OK until now when part of his intestines herniated. Please pray for Tyler and his family. Surgery is expected this week. I am hopeful that he will have a quick recovery and will be home in the arms of his loving family asap. But for now, I know he is in good hands.

Of course, I can't help but wonder if there is a connection to our son's diagnosis. If there is a genetic link, I hope that families like ours might be able to help to researchers determine that link.

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.

Our Superbaby is 6 Months Old!

Today, we celebrate Ramsey's "Half" Birthday. Every day, we thank God for His gift of life. This video takes me back to the beginning and reminds me of what a miracle our Ramsey is:

  

Happy 4th of July!

Some photos and updates

This week we went to Children's for their opinion on Ramsey's head. With his level of flatness, they had no question that he would qualify and benefit from a helmet. He will be fitted for it shortly and the helmet will be ready a few weeks after that. The helmets are lightweight styrofoam. They say that babies adjust to them quickly, as if it's a normal part of them. Most children need to wear them anywhere from 3-6 months until the shape of the head is corrected. If we weren't to wear the helmet, he could have issues down the road with wearing helmets for safety such as bicycle helmets or football helmets. The issue is not just that it's flat in the back, it is pushed up and also towards the front of his face. I would never want him to be picked on over the shape of his head or to have any future problems based on the shape of it. Am I thrilled about his need to wear a helmet all summer long? No. But in the scheme of things, I know this really is not a big deal.

This photo will be a perfect "before" photo!

Ramsey's next checkup is his 6 month well-visit with his pediatrician. His surgeon is away for most of July, so his checkup at Children's will now take place in August.

Here are some more photos that I should have posted a long time ago!

"Ant I cute?" I just love this hoodie and onesie!

Ramsey meets Mr. Potato Head

Cuddle time

Early Intervention

Ramsey had his early intervention evaluation and it went really well! They rated him according to 5 developmental categories. He scored above average in three of the categories, and just below in two others. He qualifies for physical therapy based on one of the latter, his gross motor skills. They will work with him, probably one day a week to help him lift his head and loosen his neck and shoulders a bit. Also, they suggested he might benefit from a helmet to correct his flat spot on the back of his head.  This would need to be done soon in order to correct it before he turns one, when the bones harden. I am happy that he scored so well and feel that any therapy they can provide can only help him. The case will be open for a year, so if he should need any future help or additional services, they can add them on.

God's Will

When we were searching for a name for Ramsey, my sister suggested Will. Although we didn't choose it, I like that name and it's significance. William was my grandfather's name and God's will, we knew, would determine the baby's fate. We knew that we could pray all we wanted, and find the best surgeons in the world, but God's plan would ultimately decide his future. Thankfully, our prayers were not in vain. God chose life for Ramsey and for that I will be forever grateful.

Sometimes, however, God's will doesn't have the outcome we would prefer. I've seen that too many times this week as families have lost dear loved ones. Please pray for the following families:

• The Bissing family lost their baby boy, Owen- one of triplets. They were gracious enough to have his organs donated. Little Owen will live on in 3 others. View their heartfelt blog.
• A 4 year old CDH Survivor, Kellan, died due to a pool accident. Please keep his family in your thoughts and prayers. 
• My nephew's best friend who lost his mom over the weekend. He is only 11 and has a younger sister too. Please pray for these children!

I pray that they might come to understand God's plan for them. May they find comfort in family, friends and faith.

A Picture is Worth a Thousand Words

Ramsey is such a happy baby. I've tried to express that in photos, but each time I grab my camera, he stops smiling. Thankfully, photographer Amie Brady was able to capture the twinkle in his eye!  Amie has been following Ramsey's blog from the beginning. She learned about him through a mutual friend. She knows what a miracle Ramsey is, and these photos convey that. When he smiles, I think he knows just how lucky he is; he's been touched by God!

Amie is based in Maryland but she returns to her PA roots a few times a year to schedule sessions with happy clients like me. Take a look at the sneak peek Amie provided of our recent session. These photos melt my heart and I can't wait to see the rest! My only wish is that Reed had been his normal, happy self. I'm afraid he might be affected by seasonal allergies.

Please visit Amie's website or Facebook page to see more of her portrait photography!

Life outside our home

On the bike trail with the "big" boys.

We ventured out with Ramsey a couple times last weekend, and plan to do so again this weekend. We took him for a walk on a local trail, and also to my parents (where we had a belated Mother's Day and Birthday celebrations). It's strange, feeling so scared to take him to the simplest places. We've had to be so cautious for so long that it's hard to not worry. While I still fear that he might get sick, my instinct is telling me that it's OK, and that it's good to be exposed to some germs.

Today, we met with a coordinator for Early Intervention. Ramsey will be evaluated on June 7 to determine if he has any developmental delays. It's possible that he could qualify based on diagnosis alone, however, I'm not sure how likely that is. Either way, I believe I'll be comfortable with their decision. If he is behind, it is not a significant delay (at least not in my opinion). In any case, it can't hurt to seek help if it will benefit him.

Sound asleep.

Did he just roll over, or is this just gravity?!

Ramsey wears his first pair of shoes.

Jaxson's Jog

Do you remember our visit during Ramsey's NICU stay from two CDH survivors? One of the visitors was Jaxson who turns 3 this week. To honor him, his family started a fundraiser called Jaxson's Jog. The race date is Saturday, May 28 (yes, I should have posted this sooner). Show your support by running or walking at the Allison Park event which benefits Global CDH.

CDH survivor Caleb, my son Reed, and CDH survivor Jaxson.

I had intended to create a team for Jaxson's Jog in honor of Ramsey, but it doesn't look like we'll be able to make it this year. I am looking forward to going next year with the whole family. Also, Dennis and I are hoping to create our own fundraiser in the near future. We know how touched we were when we were supported during Ramsey's CDH battle, and we want to to whatever we can to help others.

Everything that I forgot...

I knew when I posted last night that I was forgetting something. Yesterday was such a long day. There are a few things I forgot to mention about his checkup. First and foremost, Ramsey now weighs 12lbs 3oz!! He no longer needs the monitor and although they haven't picked it up yet, I didn't even use it last night. I can't believe I have the confidence to willingly go without it, but I guess the last two months (with the exception of a couple false alarms) have proven that he is OK. We do have a motion monitor of our own that we will connect for some continued peace-of-mind.

Finally, the surgeon does think that Ramsey will need a "tummy tuck" to correct the bulge in his belly. However, she said that we will wait to do that until he's past the point of getting sick again, or reherniating. Basically, if he were to need another surgery, she could do the "tummy tuck" then. If not, then it will be an elective surgery done when he is 1 or 2, before he is old enough to be too traumatized. She said the stay would be 4-5 nights. I know he has been through much more than that, but still, I am not looking forward to that...probably because it will be difficult watching a toddler face surgery. We'll deal with that if/when it happens. He's surprised us in every other way, so maybe that belly of his will just flatten itself out!!

Our Superboy!

Ramsey received great reviews from his surgeon at today's checkup. His X-Ray shows that the diaphragm is still arched on the affected side, but she doesn't feel it is indicating any signs of reherniation, just stretching.  She said Ramsey is a "Superbaby" and that it's hard to believe he is the same child she first saw when he arrived at Children's in January. She would like to see him again in two months; it's exciting to stretch out the time in between appointments! She agreed that with the warmer welcomes a chance to socialize him a little more. From my standpoint, this means we'll gain a little normalcy back in to our lives. We have been pent up for way too long and I can't wait to show him off, even if it takes baby steps.

Happy Mother's Day!

My surgery went well, and although I certainly didn't expect to be recovering on the couch this Mother's Day, I can't complain. My own mother left yesterday after spending days helping out with the boys while I prepared for and recovered from the outpatient surgery. Swinging peacefully across the room is precious little Ramsey. His big brother Reed is with Daddy, working on completing a project that I've wanted done for a long, long time. Soon, we'll schedule my Mother's Day gift, a pampering massage. Life is good and I have so much to be thankful for!

Ramsey has his checkup tomorrow at CHP. He will have an X-Ray and appointment with his surgeon. In addition, he will have blood work and an Ultrasound done for the CDH study we're participating in. I will update after our appointment.

Happy Mother's Day!