Tuesday, March 31, 2009

Juliet's Birth Announcement

Check out Juliet's birth announcement!

God's Hand In Your Life


Growing up we had a Bible story book that had beautiful illustrations. The pictures were so real, you felt like you were standing right in the middle of the story. The colors were so rich and the people were so beautiful. My favorite Bible story was illustrated in that book. A king on the throne, standing over two women, one cowered to the ground crying and the other with a look of disdain on her face, and a soldier holding an infant by one leg with sword raised in his hand. Looking into the picture I felt I was in the court of judgement.
[the picture to the left is not the one]


This story, the story of Solomon's wise judgement, has always been a favorite of mine. It is such powerful example of Solomon's wisdom. Just verses earlier, God had asked Solomon what he wanted and, as you know, he asked for wisdom. Reading the story, the judgement handed down by King Solomon is so simple, but brilliant.


This Sunday during worship we were asked to take 30 seconds to think about how God has been working in our lives. Justin and I just smiled at each other. We didn't need 30 seconds, we didn't need 5. After the 30 seconds was up we could share with our neighbors. Some of my dear friends were sitting around us and I said, "No surgery!" They all said they were thinking the exact same thing. How God is working in our lives should be easy to spot at all times. It could be as major as no brain surgery or it could be as simple as an encouraging card in the mail. It doesn't have to be complex; God is always working. Sometimes so simple, but brilliant.
Okay, so I'm no Beth Moore by any stretch of the imagination. In fact, I pretty much stink at making applications, but it's keeping me accountable and that's the important thing.

Saturday, March 28, 2009

Juliet is now TALKING.

Here she is in her fabulous jungle gym. She really likes it- when its play time.

Juliet's First Easter Package

Juliet received her first Easter package in the mail this past week from her great grandparents, Geems and Poppy. We had just gotten home from Atlanta and had to wake her up for the event. As you can see, open gifts doesn't have a great appeal yet.





God Doesn't Need Doppler Radar

I love looking at the blogs of my friends and seeing their little cherubs smile and learn new things. I love looking at design blogs written by moms; they are so inspirational and beautiful! Then there are strangers that I stalk and feel like I'm part of their family! And who can get enough of Pioneer Woman? How many times have I caught myself spending too much time browsing blogs and not spending time with God? Too many and it's shameful and sinful. In an attempt to realign my priorities, I am going to try and blog a scripture and a thought or two I have about it. So, if you, like myself, find yourself checking out blogs and skimping on your God time, you might find a scripture here & some pictures of Juliet! (Unless Juliet isn't cooperating- I've already changed 4 diapers since beginning this paragraph alone and I just heard some more!) The scripture and thoughts will try to blog about at the beginning of the day, so I can hide it in my heart, meditate on it throughout the day and hold myself accountable.

Justin took this picture while he was deep sea fishing two years ago. They had a little bit of a storm.
Let me tell you I would have freaked! (I'm not a fan of deep, dark water. Cruise? No thanks.)

Today we have a threat of severe weather. I hate severe weather. One blogger I read yesterday said she loves severe weather; the idea of hunkering down, riding it out, not leaving the house, and following the Doppler radar. Trust me, I follow the Doppler radar like a hawk, but it's not for joy. It's for survival. For some reason I have been scared of severe weather all my life. One story that always resurfaces is when I was a little girl, our family was caught in a thunderstorm with a lot of lightening. Huge bolts popping all around us. I was terrified. When I get nervous, my stomach decides to rebel. So it did and it did a lot. To this day, "when severe weather strikes," I still have intestinal issues.

I have asked myself over and over, what is causing this crazy fear? To sum it up, I don't have control. Now, I'm not a control freak. I do have a love for being in charge. Although I have really tried in the past couple of years not to micromanage. And guess what, I've made my life easier and happier. I digress. I also have a fear of pain. The anticipation of pain is too much for me. What if the tornado hit our house? I can see myself lying in bed with the 100 year old pecan tree crashing through our window, ripping a hole in our roof, trapped under a branch with one piercing my leg, rain dripping on my face, like a Chinese torture method, an unresponsive husband next to me, and lying there for hours. What if? What if? Now I have Juliet to add to the mix. I refuse to allow myself to imagine anything. Plus, moms don't get scared!

When the threat of severe weather is on the horizon, I mentally make notes as to where my jeans, sneakers, computer, weather radio, and cell phone are. When sirens go off, no matter the time, I calmly put on my jeans and shoes, strap Juliet in her car seat, and begin to gather my "supplies." Our "safe space" isn't up to my standards. Our almost 100 year old house doesn't have a room without windows! I create a "pod" in the middle of our house (6x6), closing four doors to do so. Juliet, Lucy and I sit in there with the radio going and the computer tracking the storm, while Justin remains cool as a cucumber.

I can imagine what the disciples felt like when the storm hit the Sea of Galilee and Jesus was snoozing below. They didn't even have radar! They didn't even know it was coming! Their boat was taking on water and they were sure it was going to be the end. Jesus calmed the storm and rebuked them for their lack of faith.
Sometimes bad things happen to good people. People are killed in storms who say, "God will take care of us." How do we come to terms with that? What do we mean by "care?"

All I know is that I'm too in love with this world. I love my life. Not only in the day-to-day events (which are amazing), but my very breath. It's another fear...what is ahead of me? What is death like? What happens? Will I be in pain? Will I be sad, separated from my family?
Giving God full reign in my life is the only cure. I haven't been promised a bed of roses, but I have been promised a new life, a life in Heaven, where there is no sorrow or pain. God knows what is best for me and my family and for all of us. He sees the big picture.

Tuesday, March 24, 2009

Surrendering to God's Will

Yesterday (Monday) we met with the neurosurgeon in Atlanta. At this point I was (and Justin too) going into the appointment with the mindset of this doctor has to prove to me I desperately need this surgery. Justin and I had already discussed with a third recommendation of surgery, we would look for another recommendation with the Headache Center at John Hopkins; they have a special area for Chiari Malformations. We want an opinion from CM specialist before my skull gets cut away! But no matter what, God is in control and we have surrendered to His will. "I know the plans I have for you...plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Before getting to the appointment many friends, family and brothers and sisters in Christ had called, texted or emailed they were lifting me in prayer. Not only that, but I had my own support entourage at the doctor's office with me! Justin, Juliet, Mom, Dad, Uncle Kenny, Aunt Ann, Aunt Kathy and Aunt Becky! The support from all of you has been amazing and we are so blessed!!

Justin, Dad, Aunt Becky and I went into the appointment. This was the neurosurgeon Aunt Becky worked with (for almost 30 years) and highly recommended. He is also the one that said "don't panic, but keep your appointment." We talked first with the Physician Assistant. He was so thorough. He was better than the doc we saw in Birmingham. I immediately felt more confident in this visit. He asked questions none of the others asked and reviewed my medical history with me, instead of glancing over my file. Once he left I told everyone that I already felt better about the competency of this doctor. The doc came in, fully knowledgeable about my specific case and tested my reflexes, my balance, asked many questions and talked us through the current thoughts about operating on CMs. In a nutshell, no symptoms, no surgery.

We were not expecting to hear those words. Then the questions started flying.
Is this one of the worst you've seen?
Yes, it is one of the most significant CMs I have seen.
Why are the others recommending surgery?
Because it is such a significant malformation, they probably panicked.
Am I a walking time bomb?
No. The symptoms of CM are gradual. You are not going to sneeze and be paralyzed or die.
Why not have the surgery to prevent any symptoms?
It could cause you to have chronic pain/ headaches, then we couldn't do anything for you.
Can I go back to Jazzercise and jump around?
Yes, you can live a normal life, no restrictions.
What is the plan of action then?
Every year get a MRI and let me review it. If it's clear and you have no symptoms, you're good to go for another year. If you begin to have symptoms that disrupt life, we already know what the problem is and we can fix it quickly.

There were so many questions we asked. We even asked about post-surgery. The recovery is 3 months and the first is the hardest. The doc asked Aunt Becky if she had prepped us. Nope, we had just done our research. Justin's motto throughout has been, "if it ain't broke, don't fix it." For example, no one has open heart surgery without symptoms being present. It doesn't happen. Also, The Chiari Book (written by Dr. Oro who runs the Chiari Institute in Colorado), which we've read thoroughly, has a very small paragraph stating no symptoms, no surgery. We felt vindicated. We felt light hearted. We felt so much gratitude towards God.

This weekend we began to realize the stress this had been on me. After the visit, I realized and Mama too, the stress it had been on Justin. He was back to this jovial self. I hadn't really processed this fact until I talked to Justin's mom: we have not gotten into a routine or established a normal life since Juliet has been born! I feel like we have a new lease on life. I can move on. I can start some projects. I can unfreeze. It's Spring Time in more ways than one. Praise God!!

Wednesday, March 18, 2009

God Answers Prayers

I remember going to Sunday school and cutting out little circles of red, yellow, and green. We pasted them on the black rectangle of construction paper as our teacher (who was more likely than not, my mom) reminded us of how God answers prayers. Its like a stop light. Sometimes God says yes to our requests, like a green light. Sometimes he is silent and we don't get answers for a long time, it's a maybe- not now, but yes later; that's the yellow circle. Then there's the red circle, when God says no. God always answers our prayers. It might not be what we want, but he answers. It my past blogs I've said God is answering our prayers, but I should make it clear, God has answered "yes" to our requests. Praise God!

Today I visited the neurosurgeon in Birmingham. We heard again, that this was one of the worst malformations he has seen and prescribes surgery. My brain is hanging down 2 centimeters below where it should stop. Most cases of CM the brain only hangs down 5-6 millimeters. In these cases, he does not recommend surgery. But mine is hanging down 4 times lower! He presented this information in a direct and informative way with compassion. Not only was he compassionate, he recognizes that God is the Great Physician and its God who directs his hands. He certainly has a vote of our confidence!
"Surgery? I thought there were no symptoms!" As I was talking to the doc, I may have symptoms that I did not relate to the malformation. Hand numbness, balance issues, vision changes, ringing in the ears, having trouble forming words, headaches in the back of the head, these are all symptoms I have. It is really amazing that I don't have any major symptoms, actually I know its God who has been watching over me. Maybe the true blessing is that the malformation was found before anything serious occurred. He said that he doesn't like cases like mine, because it's more preventative and you don't feel you need brain surgery for a little headache. He prefers cases where the patient is seeking relief from their symptoms. Instead of the surgery being a shock and unbelievable, it's a relief. One patient he preformed the surgery on had a very similar case as mine, the malformation was found because of suspected MS and it was found by accident. She didn't have symptoms and following recovery, she realized how much better she felt and how many symptoms she did have!
He said that we didn't have to rush to have this surgery, but we could wait until the summer until Mama was out of school for the summer. So, if surgery is the route we go it will probably be the end of May/ first of June. I would be in the hospital 24-48 hours and would not leave the house for a week. The recovery doesn't seem as bad as we first thought, ten days for sure, no lifting or straining. Once I healed, then I could continue my life as normal and not give my head another thought (haha).
Right now he said to take it easy. I won't end up paralyzed because I sneeze...good thing since the pollen this thick right now. No Jazzercise, walking is enough. A nasty fall or a fender bender could cause some major problems, so our prayer right now is for protection over me through my daily activities. If surgery is the answer, we are praying for the doctor who performs this surgery and all those who will attend to me. And I ask special prayers for Justin. He's our spiritual rock and I know there is a lot of stress on him right now. Not only is he concerned about his wife's brain going under the knife, but working enough side jobs and hours to pay for our insurance. God will provide.
This Monday is our appointment in Atlanta, where we will receive a third opinion.
This in no way has shaken our faith. God is faithful. We are confident He will care for us. God answers all our prayers.

**If any readers have a Chiari Malformation and had the Posterior Fossa Decompression performed, would you please leave a comment as to your symptoms, how far your brain was down in your spinal cord, recovery time and anything else? Thanks!**

Special thanks to Mama and Daddy who came over for the visit. Here is a pic of us taking a break at Starbucks!

Thursday, March 12, 2009

Today's MRI

Good news! I don't have a syrinx! The doc did see some discoloration in the spinal cord. But as of now, I am syringomyelia free! (it could develop later) Justin was at the appointment with me and was lucky enough to hear the doc give him the gloom and doom song and dance. He did share some good information about doctor selection though. Thank you so much for the prayers! And thank you Lord for hearing them!!

Tuesday, March 10, 2009

(sir-ing-o-my-eel-ya)

On Thursday I will have a MRI on my neck. It is to determine if I have Syringomyelia. Syringomyelia can accompany Chiari Malformations. Syringomyelia is a condition that forms a pocket of spinal fluid that has collected inside the spinal cord, which is called Syrinx (see-rin-x). This pocket of fluid, like a long blister, is formed due to the herniated cebeller tonsils. The Syrinx obstructs the flow of spinal fluid and causes pressure on and disruption of the normal functions of the spinal nerves.

Syringomyelia can be present without Chiari Malformation. Chiari Malformation can be present without Syringomyelia. Chiari Malformation can be present with Syringomyelia. Sometimes a syrinx is not present, but if the Chiari is left untreated, it can form. Sometimes the syrinx, left untreated will remain the same, other times it will continue to grow and can cause scoliosis.

Tomorrow I will not be on the computer. I will be "fasting" from the Internet. I will be devoting that time to prayer that I do not have Syringomyelia. I again ask for your fervent prayers. They are affective!

photo example here.

Saturday, March 7, 2009

2 Months

[I wrote this post on Saturday, but just now getting around to add the pictures]

Juliet has been blessing our lives for 2 months now and she is amazing! The love we have for this little one is incredible. It's neat to be on this side and realize the depth of our parents' love us! Wow! Which takes you to God's love for His Son and how He gave up His Son to die for all mankind. There are days when I wouldn't give you 2 cents for some people, but God gave Christ for them. What a lesson that is!! AND I'm just as crummy as my sinful self. Another lesson...humility!


Juliet impressed her pediatrician once again. The doc commented how alert she is and was impressed with the control she has over her head already! She said by four months she should have total control, but is almost there now. She should also be seeing in full color by that time as well. Yesterday she took notice of Justin in his blue shirt and this morning she's making a new friend with the purple toucan in her jungle gym. It is so neat to see her discover new things. Everyday it's something new!

As we suspected, Juliet is long and lanky! Who knew I would have a long, lanky baby! That is not a trait I enjoy. Her height could come from Justin, but I do have tall and lanky genes on my Mama's side. Juliet weighs 10 lbs. 6 oz. (25-50th percentile), 23 1/2 in. long (75th percentile!!) and her body caught up with her head 15 1/4 in. (50th percentile).

Yesterday was also the dreaded shots. She did so well though. Justin had her all warm and asleep. The first immunization was oral and she likes the sugar concoction! The next three were shots; she got upset, but not as mad as the shot she received last month. Justin was able to hold her for all the shots and as soon as the last one was over, he wrapped her up and she was back asleep in less than 2 minutes! She slept for another 2 hours, ate and went to sleep again for 3 hours. She wasn't fussy except for the first time she woke up. She even played in her jungle gym. She really is the best ever!
Take a look back to last month.
This month was much more difficult to take a picture. Her hands are apparently SO tasty!
Note the hand progression.






Thursday, March 5, 2009

Quick Chiari Update

Heard from the neurosurgeon in ATL, said no reason to panic, but keep my appointment for the 23rd.

The neurosurgeon in Birmingham called to schedule an appointment. It's set for the 18th of this month.

It is so amazing how caring and sensitive everyone is! Thank you so much for your prayers!! God is hearing them!!!

Wednesday, March 4, 2009

3 days = 3 new things

Juliet is growing up so fast right before our very eyes! This past weekend I noticed when picking her up, she was helping pull her own head up! Monday I decided to pull out the Bumpo seat and see how she would fare. Juliet did great!! It is so adorable seeing such a little person sit up. She would slump over every once-in-a-while, but overall she did so good and loved it!


Then Monday and Tuesday night, she slept through the night!! Of course, this might not last long, but I had to share. This morning, when Justin's alarm went off at 5:30, my heart began to race as I realized I had not been awakened by a little voice! I think this is the first time I've slept uninterrupted since pregnancy. I feel so well rested, here I am blogging at 7:30 am!

Juliet is developing a pattern in her daily activities: eat, dirty diaper, play, sleep. (The dirty diaper can pop up at any time though) When play time is over she usually fusses and I rock/bounce her to sleep. Just a few moments ago after our play time, instead of getting fussy, she fell asleep while I was singing to her! She has fallen asleep before on her own at night, but not for a nap time. I am so proud of her!!

Monday, March 2, 2009

Chiari Update

***Update to the update! My Aunt Becky, who is a nurse in ATL, called the neurosurgeon. He said he would look at my MRI Tuesday or Wednesday and see if it was serious enough to bump my appointment up this week!! My next MRI is 3/12 and the neurologist is scheduling another appointment with a neurosurgeon in Birmingham who is a member of the church! God is moving fast. Thank you for all the prayers...keep them coming!***

Just received a call from my neurologist, my next appointment is scheduled with a neurosurgeon in Atlanta on March 23rd @ 1:45.

The research I've been doing this morning leans towards not performing surgery for asymptomatic patients, but monitoring regularly.

There is a Chiari community out there and one "Chiarian" found my blog already! Her blog has very helpful resources: http://livelovelaugh-lace1013.blogspot.com/ (Thank you Lacie).

Sunday, March 1, 2009

Chiari Malformation

Thursday (2/26) I was diagnosed with a Chiari Malformation. Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance and motor skills. When the bony space at the lower rear of the skull is smaller than normal, the cerebellum can be pushed downward through the skull and into the spinal column causing pressure on the brain, nerves and affecting the flow of spinal fluid.

The first doctor has suggested surgery to correct. The surgery would cut a small wedge from the back of the skull to relieve the pressure. Currently I have no symptoms and would not have known about it except it was found by accident, looking for something else. I will have another MRI scheduled and I am working on getting a second opinion (maybe a third too).

Pray that they will find the problem is minor and surgery will not be needed. Your prayers are greatly appreciated!!