Completely compatible with life

I was reading an article the other night that said over sixty percent of expecting moms who are given a prenatal diagnosis of Spina Bifida choose to terminate. I AM ABSOLUTELY ASTOUNDED. Six out of ten moms would abort because of Spina Bifida? Spina Bifida? After our routine anatomy scan we were told Korie had Trisomy 18, which is incompatible with life. It wasn’t until 3 weeks later we found out she JUST had Spina Bifida. I love to tell everyone she JUST has Spina Bifida, because compared to Trisomy 18, Spina Bifida is nothing. We have Korie. And for me that is all that matters.

So as I was thinking about that number, I was thinking why, why would anyone terminate for that? SB is absolutely compatible with life. People with Spina Bifida often attain advanced education, have careers and families of their own. I have come to the conclusion that people are uneducated. Totally and completely uneducated about Spina Bifida. And I think it starts with the OB. If they aren’t knowledgeable about Spina Bifida themselves how can they ever educate their patients? Most often the OB is providing information that is outdated and incorrect. The Spina Bifida diagnosis is usually made during the routine anatomy scan at 20 weeks. The law says you can not terminate a pregnancy after 24 weeks. This is a very small window for anyone who has been faced with a diagnosis and a decision to make. How great would it be if all the OB physicians in Fort Smith could provide their patients with up to date facts, statistics and medical treatments about Spina Bifida. What if they could tell their patients, with certainty, that everything will be okay. So how do we educate them? The only thing I can think of right now is to drag Korie into every office in Fort Smith and show them what Spina Bifida is- and hope they will give my number to any mom who may need it.

Korie’s surgery was a little over a month ago and she is still doing fantastic! I can’t imagine the ETV CPC not being successful long-term. Everything is still pointing in that direction. She went for a follow-up eye exam last week and the doctor said her eyes are PERFECT! Praise The Lord. Thank you all for the prayers. We have had a nice little vacation away from Little Rock. This is the longest we have gone without being seen there. It has been great. We go back next Thursday though for ortho and rehab, and again the following Thursday to see the neurosurgeon. I am actually looking forward to our follow-up in Boston in September. I really enjoyed our time up there after Korie was discharged from the hospital. I plan on planning a little better for the next trip!

Thank you all again for the continued support and prayers for Korie and our family. Please, if you know anyone who needs more information about Spina Bifida have them contact me. It breaks my heart that anyone would terminate any pregnancy, but especially heartbreaking that they would do so based off of inaccurate information.

Korie and Dr. Warf

Korie and Dr. Warf

 

Korie taking in the sights

Korie taking in the sights

We had a great time at Santa's Village

We had a great time at Santa’s Village

Super cool

Super cool

My beautiful baby

My beautiful baby

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One year ago

imageOne year ago today it was Father’s Day 2013, and my present for Michael was telling him he was going to be a daddy again! If you had told me then- that in a year I would have a beautiful baby girl who needed special medical care- I wouldn’t have believed you. Our lives have forever been changed because of her, but only for the better.

She is still doing great. Her head incision seems to be healing well and her belly looks really good too. I have to say she is the best baby in the entire world. I know I’m a little partial, but she is so laid back and easy going.

We have been enjoying our vacation very much. We have to head back into Boston again tomorrow, she has appointments on Wednesday and Thursday. After her appointment on Thursday we are planning on going North for a few days before returning to Boston again next Monday to start the journey home.

I came across this poem, while I was still pregnant, and wanted to share it. While I don’t agree with everything it says (Korie’s diagnosis is not painful to me at all), I thought it was well written.

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WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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Singing songs of praise from Boston

I am going to try and make this quick, as I am eagerly awaiting Michael and the kids to get here. I miss them soooooo much and I can’t wait to squeeze them!

Korie had a follow up MRI today and I am excited to report that her syrinx (fluid on the spine) has already decompressed and her ventricles are much smaller! Praise The Lord! This is exactly what we wanted to happen. I don’t think he expected to see the syrinx go down so quickly, he originally said 3 months would be the goal. She is doing absolutely FANTASTIC! Her eye seems much better also. We will hopefully be discharged in the morning, she was slow to wake up from her MRI anesthesia so that bought us another night in the hospital.

Dr. Warf said only time will tell whether this will be successful long term but every sign is pointing in that direction.

Thank you all so much for the faithful prayers.

Dana

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Boston Children’ s Hospital update…prayer warriors needed

Good morning! Korie had her ETV CPC surgery yesterday, and overall did very well. The surgery took quite a bit longer than expected but Dr. Warf said it wasn’t due to anything unusual. They gave her morphine in recovery that resulted in her oxygen levels dropping and her needing to be monitored a little more closely. She was pretty fussy and uncomfortable yesterday. She woke up yesterday evening long enough to give me a few grins. I needed those! When she woke up about 4 this morning I noticed her left eye was turning in. Not long after, Dr. Warf’s team stopped by. Nine neurosurgical students, residents and fellows, it was a sight to see all of them pile in the room. They didn’t have any opinions to offer, just wanted to take a peak I think. Dr. Warf just came by and said he thinks it is 6th cranial nerve weakness. He said he has never had this happen but he definitely understands how it could. He hopes it will resolve itself but has consulted opthalmology for a second opinion. Before he left he said he was very unhappy about it but also not overly concerned. I’m asking all my family and friends to lift Korie up in prayer this morning. Dr. Warf is one of the best neurosurgeons in the world BUT I know a Physician even better. Who has the power to fully heal her. To God be the glory for all He has already done.

I will try and update again later or tomorrow.

Dana

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Boston or Bust!

A lot has happened over the last week. Korie was able to finally have her sedated brain and spine MRI last Thursday. The results were not what we had been hoping and praying for, but I have know doubt God knows what He is doing. The MRI showed that Korie is collecting fluid on her spinal column. It is called a syrinx, and hers extends from the base of her brain down through her cervical and thoracic spine. If left untreated it can lead to permanent damage. The “floppy airway” (that we had been told would cause her no harm) is of most concern to her doctors now. They feel like the fluid is decompressing the base of her brain, which controls breathing. Even though the ventricles in her brain are stable, it is time to intervene. Our neurosurgeon in Little Rock wanted to place a shunt, which is not at all uncommon in Spina Bifida kids. Around 90% of kids with myleomeningocele Spina Bifida have a shunt. Shunts save lives. I have absolutely no issues with her having a shunt. BUT if we can keep her from having to depend on a foreign body in her brain to manage her hydrocephalus, then that’s what we want to do. Even if it means going to Boston. There is a procedure called an Endoscopic Third Ventriculostomy (ETV)  Choroid Plexus Cauterization (CPC), that is an alternative to the VP shunt. There are 10 doctors in the United States that are trained to do the ETV CPC, and one of them is in Boston! Dr. Benjamin Warf pioneered the procedure, trains other neurosurgeons on the procedure, and we are fortunate enough to now have him as part of Korie’s care. I was able to do a telephone consult with him after he reviewed Korie’s records and he thinks she is a perfect candidate for the procedure. I found a great post here that tells a little bit about Dr. Warf and his medical career.

My big sis Sharla, Korie and myself will be leaving on a jet plane and don’t know when we’ll be back again! Oh my, I can’t get it out of my head! Anyway, we will fly out of Dallas, Sunday morning, meet with Dr. Warf on Monday and her surgery will be Tuesday. He said to expect her to be in the hospital for only a few days. But we have to stay in the area for 2 weeks post surgery. Michael and the kids will be up later in the week. We are hoping she will be feeling great and we can make a vacation out of it.

The ETV CPC for Spina Bifida babies boasts a whopping 75% success rate, which means there’s a possibility it won’t work, but the odds are in our favor. It is also a one-shot Shirley, so if it doesn’t work we will have VP shunt placed. VP shunts have, on average, a 50% chance of failing within the first year.  They are easily revised but it is another surgery. So for us, it was an easy decision to try the ETV CPC first. I am so thankful we have the ability to do this. Again, The Lord is much better to us than we deserve.

Here is a link to a video that explains hydrocephalus, VP shunts and the ETV CPC.

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Great news from last week…CASTS ARE OFF! And her feet look amazing. I am in love with her chubby little legs and those itsy bitsy toes. She is wearing a Dennis Brown Bar 24 hours a day, minus bathtime and me just wanting to kiss those little tootsies time! In 3 months she will only have to wear them at nap time and bedtime. The ortho clinic at ACH is fantastic, I know we had super long wait times almost every week, but they were so great with Korie, and Braylon and Cassidy when they tagged along. They adore Korie and we are pretty fond of them too.

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Korie with her three favorite ortho techs- Waymon, Alicia and Jackie!

 

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This trip will definetly be an adventure. I had to plan an unexpected, nearly 3 week “vacation”, 1600 miles from home, in less than a week. And this coming from a girl who has never been on an airplane! I am just hoping we don’t end up in California or Istanbul!

Prayers for safe travels, Dr. Warf and Korie, and myself are greatly appreciated. I will do my best to keep every one updated after her surgery.

Dana

PS- if you have any great tips on things to do in the Boston area, send them my way. I haven’t had even a minute to look at FUN stuff ;)

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My sweet Korie

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Happy Birthday Braylon

I will never ever get tired of rehashing the day Braylon was born. My water broke about 7:30 am, Michael told me I was being dramatic and left for work. I was pretty sure I knew what I was talking about, but since this was the first time around for me I said “okay?” and went back to bed for a bit. Needless to say, he had to come back home and pick me up and take me to the hospital! Braylon was born at 1:36 that afternoon, and our lives haven’t been the same since. He is such a little stinker, but also very  kindhearted. I am undoubtedly a little partial but I also think he is quite handsome!

I think he had a pretty fantastic day. Red Lobster after church this morning, a bloody nose from his neighbor friend- that is a girl- that came over to bounce on the trampoline with him, strawberry pie from Aunt Tra and Varsity for supper after church this evening! Doesn’t get much better than that- minus the bloody nose!

2 days old

2 days old

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2 years old

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6 years old

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All grown up!

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He’s a big ole mama’s boy :)

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Our best impression of “Dr. Ramen Noodle”

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We’ve been photo bombed!

Happy Happy Birthday to my sweet baby boy Braylon! I love you more than the stars in the sky.

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Oh, Little Rock

I have such a love/hate relationship with Little Rock. I love that Little Rock has one of the very best children’s hospitals in the nation. I hate the almost 3 hours it takes me to get there. But I love the scenery on the way, Arkansas is really beautiful when you take a minute to take it all in. I think our weekly visits to the Rock are winding down. Korie had her heel cord lengthening surgery done on Tuesday, along with an airway endoscopy. Her ENT doctor was very pleased with the appearance of her airway. He said the “floppiness” of her airway is located in her trachea rather than the larynx as he had originally thought. So it is tracheomalacia rather than laryngomalacia. Her vocal cords are weak and he thinks it is related to the Chiari malformation in her brain, but doesn’t think it will cause any long term problems. He even said she could potentially out grow it. Her orthopaedic doctor is extremely happy with her feet and the surgery to lengthen her heel cord went great. She wasn’t able to have her MRI done due to scheduling conflicts. This was very disappointing because now she will have to be sedated again to have it done. But, she is doing fantastic and I couldn’t be happier with the results we were given. God is good!

Little Rock must be a “sad” town. While I was there for a prenatal exam back in the Fall, I had a crazy social worker lady ask me if I was sad. She said, “Are you sad? You look sad?” What do you think, Lady? I politely told her no though. (I still wonder what she would have said if I had said yes!) Then, a week or so ago Korie and I had to stay over night for two days worth of appointments. We had a fun filled evening of shopping at the Park Plaza mall. I knew this would happen sooner or later, but it still caught me off guard…we were in Gymboree when a lady walked right up to Korie and said, “Oh how sad.” With all of the grace I could muster I replied, “Sad? She doesn’t look sad to me. I think she is quite happy.” Okay, so I am sure she didn’t mean anything by it but all I could think about was what if Korie could understand what she was saying. Sure I get a little sad sometimes when I think of possible challenges she might face in her life. But those feelings are my issues- not hers. And I surely wouldn’t share them with her or make her feel like she should be “sad” about Spina Bifia. Afterall, she has had Spina Bifida since before I knew I was pregnant, since before God formed her in me. It is a part of her and always will be. And I pray she will never be sad about it, I pray she will look at her life and feel incredibly blessed that the Lord gave this to her. That through Spina Bifida (or whatever else she chooses) she will honor Him and magnify Him with her life. I can honestly say there are days that I wish she didn’t have Spina Bifida (my van would have much fewer miles!) but over the last 3 months, my eyes have been opened to the wonderful blessings that can come out of trials. I felt like pregnancy was a trial, but Korie certainly is not- she IS the blessing, Spina Bifida and all! So to the uncooth lady in Gymboree, keep your comments about being sad to yourself. If you want to ask me about Korie and why she is wearing casts, feel free. I love to tell people how far the Lord has brought her. Oh, this also holds true for the people who stare at us like I slammed her legs in the car door. Ask. Don’t stare.

Mother’s Day is almost here! I love being a mom more than anything in the world. I also miss my mom more than anything in the world. (That’s what makes this day so tricky.) As I sat in the surgery waiting room on Tuesday my heart actually ached for her. While I was people watching, it dawned on me that almost every parent in that room had their mom with them. I was lucky enough to have my big sis with me though- she runs a close second! We even talked about mama and how she would have been there holding my hand. She was so good at that, making you feel better when you were scared or nervous.  Even if she embarrassed you with her warped sense of humor in the process! So all of you kids out there (big and little) give your mama a great big ole hug and let her know how much she means to you! And to all you mamas out there I hope you have the best Mother’s Day EVER!

I will end this with super exciting news…we don’t have to be back in Little Rock for 3 weeks! Yes, 3 weeks! Well that’s if I cancel our neurosurgery appointment next week, which I plan on if she is still doing so fantastic, and I know she will be!

Dana

Does this face look sad? I don't think so :)

Does this face look sad? I don’t think so :)

 

 

 

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Spina Bifida Clinic~ prayers please

We have our first Spina Bifida Clinic day tomorrow. Clinic is where we will see all of Korie’s doctors in one day. We are admitted to a room and the doctors come to us. We have been seeing Ortho every week for a while now, and Neurosurgery every two weeks; this will be the first visit with Urology since we were discharged from the NICU. I am anxious about tomorrow, we will find out a great deal about Korie’s progress. I am asking for specific prayers for a few things. First, we will have a renal ultrasound to check the status of her bladder and kidneys. She has a Grade I hydronephrosis, which means her right kidney was a bit swollen. She also was not emptying her bladder completely on her own, according to the scan she had in the NICU. We are having to cath her three times a day right now and I am praying the ultrasound tomorrow will not show any hydronephrosis at all and that she will show those doctors whose boss and that she can empty on her own!

Next, we will have another ultrasound of her brain to check for hydrocephalus and the size of her ventricles. She is still doing great without a shunt and I am asking for specific prayer that her ventricles will have decreased in size or stabilized. Her last two ultrasounds showed an increase, and we don’t want this. Her neurosurgeon will continue to put off placing a shunt as long as Korie continues to not show symptoms of increased pressure or the ventricles do not increase dramatically.

After we meet with the Urology and Neurosurgery team we will see Ortho about her feet. Last week Dr. Rabenhorst said Korie was ready for her heel cord surgery! We are about 2-3 weeks ahead of schedule. Everyone is absolutely amazed at how well her feet have responded to the treatment. Only about 40 percent of SB clubfeet will respond to Ponseti casting, and we are part of that 40 percent! The plan tomorrow will be to schedule her surgery, it could be as early as Friday, but probably early next week. While she is in surgery for her feet her ENT doctor wants to have an MRI done. She has not had one yet and he is concerned about the Laryngomalacia (that in itself is not a big deal) not being the only thing causing her noisy breathing. He did a small scope on her last week and said she has some right sided vocal cord weakness. He first told me vocal cord paralysis, which totally freaked me out! But thankfully it is just weakness and only on her right side. The MRI will show if the Chiari Malformation in her brain (which we only know about from the prenatal ultrasounds) is what is causing the noisy breathing. She is not having any apnea episodes or choking spells so I am hopeful that it is just the Laryngomalacia. I am praying her MRI will not show any signs of a Chiari Malformation- at all. NONE. The Lord continues to work in her daily and nothing is impossible with Him.

I know many of you continue to pray for Korie daily and I am so thankful for that. I hope you will pray specifically for the things I mentioned above. I also ask that you will pray for Korie’s soul. It’s never too early. Sometimes I get so caught up in her physical ailments that I overlook that fact that her spiritual health is what ultimately matters. Her being able to pee on her own or walk without braces is not what will get her to heaven. Above everything I pray the Lord will seal her for His kingdom.

Dana

 

Korie and I at Easter

Korie and I at Easter

Braylon earned his Sparky Award at AWANA!

Braylon earned his Sparky Award at AWANA!

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