Korie and the case of the wonky eyes

It seems I always get all worked up over something Korie is, or is not, doing. I am a self-professed worry wort. I can remember after we brought her home from the hospital I was worried she was sleeping too much, then she wasn’t sleeping enough. I even fretted over her not crying as much as I thought she should. Seriously! Instead of having a thankful heart for a laid back and as perfect as you can get baby, I worried. It was sucking the joy right out of me. I remember when I was a kid and would worry,  my mama would tell me worrying meant I was not trusting in God to take care of the situation. I am thankful now that The Lord has been convicting my heart, and showing me how to turn from worry and totally trust in Him. It’s not always easy though, in fact it has been down right hard these past few days. Korie has been doing this weird thing with her eyes, she kind of scrumples up her face and squints. It only lasts a moment but has been happening much more frequently. I called the SB clinic in Boston today and was reassured that if Korie is otherwise acting fine, then we should be okay to watch and wait. Her follow-up MRI and appointment in Boston, with Dr. Warf, is two weeks from today. I also called her ophthalmologist and I am hoping he will get her in tomorrow. He should be able to dilate her eyes and tell if there is pressure on her optic nerve, which is a marker for increased intracranial pressure. I also noticed tonight her pupils aren’t equal.

I am looking to God’s Word to help me. I keep thinking of what Paul says in Philippians, “do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” When I stop and pray every time I feel worried or anxious, I can feel the peace of God overwhelm me. I know He has a plan for Korie, even if I can’t see it.

I am asking for prayers for Korie. Please pray that whatever is causing her to have these wonky eye issues will completely be resolved. And please pray for me, that The Lord will continue to show me how to best take care of her. I keep thinking, if we can just get her back to Boston! But in reality -whether she is in LR or Boston- it is The Lord who is her physician and can heal her. Please lift her up to Him.

Dana

No wonky eyes here...just chillin with big bubs and sis

No wonky eyes here…just chillin with big bubs and sis

My two beauties

My two beauties

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First day of our third year

Wow! We are starting our third year home schooling. I am proud that I haven’t scarred our children. <Yet.> Give me another year or two. I am pretty sure Michael questions our decision to home school on a weekly, maybe daily, basis. I’m not sure what we were talking about or how it even came up but I forgot that beavers could go underwater. He gave me the are you kidding me? look. That helped me to remember that they won’t in fact drown when they are under the water building their dam.  Umm, I wonder if Liberty is still enrolling?

Today is the one day out of the whole year that Braylon likes for me to take his picture. Weird kid? Maybe. But I will take it. I didn’t even have to make him get dressed this morning. Cassidy on the other hand usually LOVES to doll up to have her picture made, but this morning she just wanted to wear “play clothes”. Because that is what you wear to school. Duh.

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My goofy but handsome boy.

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Not sure what was going on here.

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My beautiful first grader.

Our first day went really well. It always does. It’s day two, three, four, (I could continue counting but I won’t) where things can get ugly. If this year is anything like the last two, they will start testing me about 8:30 in the morning. Just to see what they can get away with. Hopefully by this time next week we will be settled back in to a nice routine.

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Korie is six months old now. Where did the time go? She already has a tooth! She is rolling and working really hard toward sitting up. We start physical therapy at the Kistler Center next week. She will have a 45 minute session twice a week. We have only met her therapist twice but I love her already. She is amazing with Korie.

I decided a week or so ago it was time to try Korie on some solids. Mostly just for fun. And I have to admit, Braylon, Cassidy and myself had a lot of fun. I don’t think I can say the same for Korie. I was only going to give her two or three bites of the prunes just to see how she liked it, but she was so stinking funny we couldn’t stop. She probably ate half the jar. I will let the pictures speak for themselves.

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The above picture is for the EI (Early Intervention) lady who assured me Korie wouldn’t be sitting before 9 months! She is by no means sitting independently for any length of time, but we’re not even close to 9 months yet. Korie is going to show everyone who’s boss.

 Thursday is the big day. NO MORE SHOES except nap time and bedtime. I’m looking forward to airing her feet out. They are stinky. She is doing absolutely fantastic. I honestly don’t think she could be doing any better than what she is. I give glory to God. He is so merciful.

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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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