Boston- Take Three!

She's ready!

I just wanted to give everyone a quick update about Korie and our trip to Boston. We have been planning this trip for about 6 weeks now. There is not anything urgent going on with Korie, but there are several subtle things that need to be addressed. There seems to be some concern regarding how she is sitting and the beginning of possible scoliosis. Her left foot is trying to turn in again even though we have been compliant with her braces. There are several other little things, that when put together, throw up red flags. I spoke with Dr. Warf and he thought it would be best if we brought her back to Boston so he could see her for himself. He thinks it is possible she is experiencing symptoms of tethered cord, but it could also be her giant syrinx, or even good ole fashioned hydrocephalus. They have scheduled her for detethering surgery on June 2nd, IF she needs it. It is possible he will tell us she needs a shunt, and if that is the case, then that’s what we will do.

We leave bright and early in the morning. My big sis Sharla is going so Braylon and Cassidy can go with us too. They are so excited. Korie will have testing on Wednesday and we will meet with Dr. Warf and the Spina Bifida team on Friday.

I have been trying to put this all together in my head and I can’t come up with a good solution. Of course I don’t want her to have any type of surgery (detethering surgery can be a tough recovery, and we have fought so long and so hard to keep her shunt free), but if surgery will help my baby girl progress like she needs to then that’s ultimately what I want. I keep reminding myself, not to lean on my own understanding, but in all my ways acknowledge Him and He shall direct our paths. So that just leaves me with praying that the Lord’s Will be done.  I’m praying that He will give the doctors clarity as to what Korie needs and give me peace about the situation.

I will update as soon as we have a plan in place.

Getting sized for a gait trainer, this one was a little too big and hers will be pink!

Getting sized for a gait trainer, this one was a little too big and hers will be pink!

She has started crinkling her nose when she smiles...too cute!

She has started crinkling her nose when she smiles…too cute!

Just jammin'

 jammin’ while she’s cruisin’ 

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Wow, what a week!

Things have been fairly quite around here the last few months. I like it when our life is too boring to blog about. Then this last week happened. It is so much easier for me to come over to the blog and update everyone than it is to rehash over and over what has gone on this week. Not that I mind anyone asking how we are, or how Korie is doing, but this really is the best way to keep everyone in the loop.

I’ve had several people ask me what other “shenanigans” Korie had been up to before her latest on Wednesday. Well last Thursday (actually two Thursdays ago now) Korie was eating a party cracker, apparently she put the whole thing in her mouth, chewed it up into a big ole wod and tried to swallow it. When I gave it to her I thought to myself, “this is a really hard cracker” -but she was setting on my lap, and good grief it was a cracker, she’s had hundreds of crackers. When I realized she wasn’t holding the cracker in her hand anymore I turned her around on my lap and could tell she was choking. She looked scared. I leaned her over my lap and gave her several back slaps. After I set her back up I could see some cracker in her mouth so I tried to get it out. I think when I tried to get some out I actually pushed more farther down. I wasn’t intentionally doing a “blind finger sweep” but now I completely understand why they tell you not to do that. So I flipped her back over and did several more back slaps. It didn’t help. I panicked. I told Michael to call 911. Braylon and Cassidy were going nuts. It was very scary. I continued to lean her over my lap and give back slaps. I don’t know that they actually helped, I think she probably was just able to get it down. But every time she would swallow she would scream. Crying is good, right?! By the time the ambulance made it to our house (that’s for another post) she seemed to have the whole cracker down. I knew it would make everyone feel better if we let them check her out anyway. And now Braylon and Cassidy have declared, “NO MORE PEOPLE FOOD FOR KORIE!” (Yes, they call anything that isn’t baby food, people food!) Back to purees.

Fast forward to Wednesday. I starting throwing up early in the day. Michael came home from work to take care of me, or at least make sure Korie was taken care of. It wasn’t long after he picked the kids up from school that Cassidy started throwing up. Yikes. I decided to go to bed early with Cassidy, since we were both so pitiful. We couldn’t have been in bed more than a few minutes when I heard Michael yell, “DANA! DANA!” I just knew she was choking again. I ran into the living room and Michael handed her to me. She was having a seizure. She has never had seizures before. I laid her on the floor while Michael called 911. She wasn’t breathing. She was turning blue. I started CPR. I’m not sure how long I did CPR or at what point she started breathing on her own again. I just know when she did she still didn’t look like herself. It didn’t take long for her to drift off to sleep. Luckily, it didn’t take the ambulance and first responders quite as long to get to our house this time. They loaded her up and to Mercy we went.

Once we made it to the ER, they were pretty fast about seeing her and getting tests started. They explained that under normal circumstances they wouldn’t usually do testing for an isolated seizure but since Korie isn’t your typical kid they felt more comfortable ruling out things that could have caused her to have it. They did a chest x-ray and a CT scan. After the CT scan the doctor started talking to us about sending her on to Children’s at Little Rock. He said he felt like everything was “normal” but again he felt more comfortable, given her history, to send her on. Michael and I decided he should go home, get some sleep and be fresh to take care of the kids. Korie and I waited patiently for the transport team to come and pick us up. We left Mercy a little after 3am and made it to Children’s around 5:30. Thankfully the ambulance had a pillow and blanket for me. Korie slept the whole way.

My sweetheart

My sweetheart

The ACH staff were also great about getting Korie settled right in. A neurosurgery resident, that we met a few weeks ago, came in and let me know the CT scan did in fact look good. He recommended a neurology consult. The neurologist ordered an EEG. Korie does not like anyone or anything to touch her head, so you can only imagine how much fun getting her set up for the EEG was. After she had the electrodes placed and the test was started we both took about a 30 minute nap. The EEG tech was super. I’m pretty sure I was drooling all over myself during my nap and she didn’t even laugh at me! The neurologist read the EEG not long after and it was normal. The ER doctor told me they were surprised it didn’t show any abnormal waves. Given the fact she was stable and the CT scan and EEG were normal we were free to go home.

All hooked up for her EEG

All hooked up for her EEG

They couldn’t tell me why she had the seizure or if she will or won’t have one again. When we left LR I really thought the watching and waiting for it to happen again was going to overtake me. But I ABSOLUTELY refuse to let her one seizure suck the joy out of me. And if I watch and wait, that’s exactly what’s going to happen. So I have forbid myself from it!! 

Braylon and Cassidy have had an incredibly tough week. They love their baby sister so much and they had to witness more than I would ever want them to. The events of the last week are a good reminder to us that life is fragile. I’ve taken every opportunity possible to talk to Braylon and Cassidy about the Sovereignty of God. It can be difficult to understand. I am just praying for God to work in their lives through this.  “And we know that for those who love God, all things work together for good, for those who are called according to His purpose.” Romans 8:28

Thank you all so very much for the prayers, well wishes, phone calls, food, offers to keep the kids, etc. We appreciate it more than you will ever know. I can’t imagine being on this crazy ride without all the awesome people in our life. If it seems like I’ve been avoiding you the last few days, I’m sorry, I will crawl back out of my shell soon. Love y’all!

IMG_5424

Watching daddy mow. She is such a daddy’s girl!

 

IMG_5435

Love that sweet profile

 

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Korie’s MRI results

Wow, the blog has been quite lately. I didn’t realize November was the last time I wrote. I was reading the last post about Korie’s new wheels and realized I never went back and added that she started army crawling the very same week we started using the ZipZac. Maybe it was just a coincidence but I think the ZipZac made her realize she didn’t have to just lay there anymore. I wish I could report that she was cruising the house in it but she’s not. She’s crawling where she wants to go! Even better.

I really came over to the blog so I could give everyone an update on her MRI results. We had tried previously to get it scheduled in Little Rock but it just didn’t work out, so Korie and I had our plane ticket and we were prepared to fly to Boston last weekend. Last Tuesday afternoon the MRI scheduler in Little Rock called me to tell me they could do Korie’s MRI the following day (Wednesday, Jan 7th) if we wanted to. I was in such conflict. We already had our non-refundable ticket. I really, really wanted to see Dr. Warf in person again. But, I felt like the Lord was making a way for us. I was already dreading the long flight just Korie and I. Not to mention the weather in Boston. So we decided it would be best if we just did the MRI in Little Rock, with Dr. Warf’s approval and agreement that he would review the images.

Korie has to be sedated for her MRI because of her age and the length of the scan. She wasn’t on the schedule until 3:45 in the afternoon so this made for a long day of nothing to eat or drink. I was a total mess when it was time for them to take her back. She cried when they carried her away. Then I cried. I told the really nice nurse I didn’t like the anesthesiologist because he called Korie a boy FOUR times! I am sure I was being completely ridiculous but some strange man, who thought Korie was a boy, was about to go put my baby to sleep. And I didn’t like it. She was so kind and assured me she would go and check in on her. She called me about 30 minutes later to tell me Korie was asleep and in the scanner. She didn’t have to do that, Korie wasn’t her responsibility anymore after they handed her off to the anesthesia team. It meant a lot to me.

I absolutely love when the Lord shows Himself to me. All you have to do is look around at His Creation and you know He is there but there are also times when He reveals Himself in such a way that it is unmistakable He is showing me something. Or teaching me something. I got settled in the waiting room, opened my iPad and started in on my daily reading. I went through my OT chapters, NT chapters and then my daily Psalm. There it was. Psalms 112:7 –He is not afraid of bad news: his heart is firm, trusting in the Lord. His heart is steady; he will not be afraid. Then I went on over to Psalm 118 –It is better to take refuge in the Lord than to trust in man. I clung to this verse during pregnancy and now I was finding comfort in it again.

Korie’s scan lasted almost two hours. She did great with the anesthesia and was awake before they even had her in recovery. She was happy when she got to be in her mama’s arms again. Since we had appointments the next morning we stayed overnight in Little Rock.

We were back at the hospital by 9:30 Thursday morning. Our first appointment was with Dr. Ocal, her neurosurgeon. It was no surprise to me she came in and said Korie needed a shunt. She has never been enthusiastic about Korie having an ETV rather than the shunt. She said her ventricles were smaller but the syrinx on her spine had not decreased. She stated the radiologist indicated a significant increase in the size of the syrinx, she did say she didn’t see an increase but it had definitely not decreased. After visiting with her a while and helping her understand how well Korie has been doing she agreed we could give her another 2 months to see what happens. I left the appointment disappointed and confused. But I found myself taking comfort in those specific verses again. And I knew Dr. Warf had the final say.

We sent the images to Boston for Dr. Warf to review. They ended up being delivered on Saturday to the main hospital rather than on Monday to Dr. Warf’s office. It was Wednesday before they located the disc in the mailroom. I emailed Dr. Warf’s assistant on Thursday and she informed me he was out of the office until Monday. Bummer. It looked like I was going to have to wait another four or five days to get his opinion. When I checked my email on Friday morning this was in my inbox:

“Dear Mrs. Stout,

Thank you for sending the images. I am happy to report that, compared to the MRI in September done before I reopened the ETV, the ventricles and the syrinx are all smaller and it is obvious the ETV is wide open with vigorous flow through it. There is nothing further to be done now except repeat the MRI in another 3 months. If this looks stable or further improved I would get another MRI 6 months later (about a year from the last operation in September) so long as she is clinically stable. If it looks good then, she would not need another MRI for at least another year so long as she was doing well.

I am quite happy with this result, and suspect that over time the syrinx will decrease further.

Take care,
BW”

So a couple of things here. 1) To God be the glory. He comforted me through His Word and gave me peace that surpasses all understanding. He has clearly had His hand on Korie. He IS the Great physician. 2) Dr. Warf is amazing. Not only is he a brilliant doctor, but he truly cares about his patients. If he didn’t he wouldn’t have emailed me at 9pm to give me his opinion, which was clearly better than the first we received.

Dr. Rabenhorst, her ortho doctor, squeezed us in while we were in Little Rock so we didn’t have to make an extra trip to see him next week. He did x-rays of her hips and was extremely happy with the way they looked. They are aligned appropriately and in the socket just as they should be. Dislocated hips are common in SB kids, so this is another huge praise.

Korie is really doing very well. She is still army crawling all over the place and is sitting better everyday. We don’t have to see neurosurgery for three months! She will be having bladder and kidney testing in February that will determine if/how often she will need to be catheterized and if she will need medications to relax her bladder.

As always, we appreciate the prayers and well wishes so very much. When you are praying for her please remember to thank Him and praise Him for all He has already done.

Dana

Korie was rolling the ball with her sissy!

Korie was rolling the ball with her sissy!

 

 

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Korie’s first set of wheels

How many times do you think I’ve heard, “my cousin’s, wife’s, brother’s little one has Spina Bifida and you can’t even tell. He walks all over the place”? Too many to count. I am happy for them. I really am. I’m a cheerleader for everyone with Spina Bifida, young and old. But I want to make this very clear, Korie’s ability to walk -or not, will NOT ever define who she is. She will not be any less amazing if she uses wheels as her means of mobility. After all, it’s not your legs that get you into Heaven, or even Harvard for that matter.

Of course we are hoping and praying that she will use her legs or the 10-toe express. And the doctors are telling us they are pretty confident she will, probably with some sort of AFO (Ankle Foot Orthosis) a.k.a. cute little braces on her feet decorated with butterflies or fairies. It is pretty apparent that she is going to be delayed. I have to keep reminding myself that delayed doesn’t mean never, it just means later.

Korie is already a very curious almost nine month old. I certainly can’t expect her to just lay there, or sit there. How boring is that? So…drum roll please…she received her first set of wheels today! They are not at all intended to take the place of her crawling, or walking. The ZipZac II will hopefully give her the mobility she needs to explore her surroundings. There has been much research done linking early mobility with cognitive development. Just because she can’t physically get to the toy doesn’t mean she doesn’t want to play with the toy.

Braylon and Cassidy had so much fun pushing her around in it tonight. (And cruising in it themselves!) It will take her a little while to master it. And that is why I wanted it now. Hopefully by the time she is a year old, when kids typically are taking their first steps, she will be hitting the open road with the wind in her hair.

Braylon thought Korie would have a great time under the table.

Braylon thought Korie would have a great time under the table.

Just chillin'

Just chillin’

Korie loves her K-car!

Korie loves her K-car!

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Shake it Off Spina Bifida

October 10, 2013- “You will not carry your baby girl to term, and if you do she will only live a few hours, a few days at best.”

October 10, 2014- Korie is a beautiful, bright, happy baby girl. She can light up a room with her smile. I can’t imagine life without her. I am so incredibly blessed to be her mom.

October is Spina Bifida Awareness month. In honor of that, and our anniversary of D-day, I wanted to share a pretty awesome video.

Shake it Off Spina Bifida

image   image As I am typing this Korie is  on the floor next to me trying to decide which toy will taste the best.  If only I could have looked into the future a year ago, it would have saved a lot of heartache. It won’t be long and we will be making our own Shake it off video!

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Run, Dana, Run!

Flying 1,600 miles with an almost 8 month old…piece of cake! Except for security, almost missing our connection and not being able to use the restroom from Boston all the way to Fort Smith. I really hope that if any of the TSA agents in Boston need to fly with their baby by themselves, who just had brain surgery, they will be treated better than I was. I understand it’s not their job to coddle me, but good grief, I have a baby here. And a carrier. And a stroller. And a large diaper bag. And I had to take my shoes off. All while they stared at me as I was about to drop her. Seriously, they could have at least lifted the stroller on to the conveyor belt for me. I would like to think I’m not a crier but here lately it seems I’ve been crying, a lot. So by the time we were through security it was no surprise I was crying.

As I sat in the airport waiting for our flight, I felt like I was in another world. I have always heard people say things were surreal. I don’t guess I have ever experienced that before. Until Boston. I really did feel like I was in somebody else’s life. Was I really in Boston? 1,600 miles away from my husband and big kids? With my baby who has Spina Bifida? How did all of this happen? How did we get to this point? Yes, I cried some more. (Are you starting to see a trend here?!)

After sitting and watching planes come and go for an hour or so it was our turn to board. First ones on! That’s right, the agent was super nice. Probably felt sorry for me. Once we were seated I started fretting again about who our seat mate was going to be. Please Lord let it be a lady, she doesn’t even have to be nice. Just let it be a lady. I really, really was not looking forward to nursing Korie next to a strange man. I don’t particularly like nursing in public anyway, but definitely not next to a dude. So as each person boarded, I kept thinking, please not him, or she would be good let it be her. It seemed as if the plane was completely full before our seat mates got settled. Thank you Lord, it was a nice looking couple probably in their late fifties or early sixties.

As we were getting ready to take off, the lady asked me if we had been visiting grandparents in Boston. I said, “No we were here for medical care for Korie, she has Spina Bifida.” I was about to explain what Spina Bifida is, like I always have to, and she said, “I know a little about Spina Bifida.” I said, “Oh you do?” (Here it comes- her husband’s, aunt’s, cousin’s, brother was born with it back in the 50’s and died of infection?) She said, so sweet like, “my 31-year-old daughter, Amy, has Spina Bifida.”

What?!

That is divine intervention, folks. I truly believe, with all my heart, The Lord placed Beverly right there next to me, because at that moment I needed Beverly very much. We spent the next several hours talking about Korie, and Amy and Spina Bifida. And I cried, again. I really tried to express to Beverly what an angel she had been to me, I hope she understood. She was like talking to my mom.

Now try to tell me God doesn’t exist. And take care of His people. Because I will tell you otherwise.

Let me give you a laugh now. Picture me running through DFW (the 4th busiest airport) pushing Korie in her stroller. My hair flying. I hear, “Final boarding call for Dana Stout. Final boarding for flight 3399 to Fort Smith.” So I amped up my running. I COULD. NOT. MISS. MY. FLIGHT.  I ran faster. Then when I could see the gate and the agent, I started waving my arms in the air. I am positive I looked foolish. She said, “slow down honey, you’re here!” I boarded, they closed the door, I sat down and almost threw up. I could not breathe. At all. I would say it was a good ol fashioned asthma attack. Except I don’t have asthma! Then I realized, I hadn’t used the bathroom or changed Korie since Boston. It was going to be long hour to Fort Smith.

As it turned out, it was only 41 minutes to Fort Smith. About the time we got up, it was time to come down. The pilot gave us a beautiful smooth landing. We disembarked and I felt like a celebrity. Even though it was probably mostly about Korie and not me! (See pic below)

No sweeter way to be welcomed home!

No sweeter way to be welcomed home!

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Bored in Beantown

Who would have ever thought I would go to Boston and be bored. I think you could be here for weeks and never run out of things to do. I enjoy the walk from Children’s to The Inn, where we stayed a few nights, and it’s only a block. I’m disappointed we didn’t get to explore more. I would say, there’s always next time, but I’m really hoping there’s not! Today has been the longest so far. I miss home very much. If all goes as planned, we will be discharged Saturday and will leave the hospital and go directly to the airport.

imageBraylon and Cassidy had so much fun splashing in the water in the middle of Boston. This fountain was really pretty. There are neat areas like this all over the city.

imageMichael and the kids went walking on Monday while Korie and I were at her appointments. If you look close you can see Braylon standing on the steps of his future…Harvard Medical School.

image Boston has been grey and lonely since Michael and the kids went home.

imageIf anyone was wanting to send flowers, or balloons, or candy and needed our room number- here it is!

image

This is the new, big, fancy, private room we were moved to. I think the nurses felt sorry for us. It is like staying at the Hilton after being at the Motel 6.

image Korie is not having any trouble keeping her self occupied.

imageLook! Sunshine! That lasted about 5 minutes and we are back to being grey and lonely.

imageKorie loves giving mommy sugars! She could have possibly been licking me, but either way I think it means I’m sweet.

imageWe took an evening stroll through the hallways and Korie wanted to pose for a picture.

imageYes, this is me. In a crib. Where I have been sleeping since Monday. Now tell me more about how you didn’t sleep well last night.

Korie had a student nurse this evening who is from Dallas. She is at Rhode Island U on a soccer scholarship. She was the sweetest. I feel like we are neighbors. You know since we only live 5 hours apart.  Korie also has a resident from Dallas who thought it was so cool I wore a Rangers shirt yesterday. Even though they stink. Talking with my neighbors was probably the highlight of my day! Boring, I know.

I want to end with a MEGA-BIG-HUGE thank you to everyone who has offered to help Michael with the kids. Being a single dad is tough, I’m sure.  And as always we appreciate all the faithful prayers. Please continue. I am going to need them as I travel back home by myself with Korie. I am feeling a little intimidated.

Dana

 

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Another surgery down

Look who's up and playing!

Look who’s up and playing!

Korie had her surgery earlier today and did great. There was a layer of scar tissue covering the hole. Dr Warf was able to remove it and open the original hole back up. He was also able to make a second hole on the ventricle wall. He said he felt comfortable with the first but there was no reason not to create another. She tolerated everything very well. She is not full of grins and giggles yet, but that’s okay. I wouldn’t be either.

Thank you all for covering us in prayer. I will update again soon.

Dana

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