Specific Prayer Requests

I know so many of you have already been praying for Henley and for our daughter to be a part of your prayers to the Lord means more to me than you can ever know. I KNOW the power of prayer. I have seen undeniable proof from the prayers people have prayed over us through the years, so I humbly ask you to continue. Tomorrow is the big day and I wanted to give some very specific things you can be praying for this week.

1. PRESENCE: Pray that the Lord stands next to Henley the entire time during her surgery. During the last surgery Henley heard very clearly from the Lord and she knew that He was with her. She even gave us proof that He was there by giving details she could have never known. If you have not read that blog post, it’s powerful for sure. We are praying that God does it again. But even more so, we want the Lord’s presence to be FELT by all of the people in the operating room. We want the entire team of people to have a powerful encounter with the Lord that they can not deny.

2. PROTECTION: Pray for protection over Henley’s brain. For it to be crystal clear what Dr. Greenfield needs to do once he gets in there and that he is able to make confident and effective decisions. Pray that there will be no infection, no spinal fluid leaks, no pressure changes.

3. EFFECTIVENESS: Please pray that this surgery is the LAST surgery Henley will ever have to go through, that the results will be effective and long lasting and that ALL of her symptoms would be resolved completely. That her brain would function perfectly, that her mind would be cleared of any clutter.

4. HEALING: With Ehlers Danlos Syndrome, the physical healing post surgery can be complicated. Last time her stitches started opening back up even 6 weeks post op and became infected. So this is a big deal. Pray for perfectly secure stitches and quick healing of the skin.

5. PEACE: This probably goes without saying, but we need prayers for peace. Not just Henley, but Haven, Zane, me, Adam….our whole family. It’s a lot and we need the peace that passes all understanding for sure.

6. MENTAL RECALL: This is a big one. Can we pray that Henley’s mental recall of all of these medical things that she has gone through and continues to go through. My prayer is that she remembers these times as times when she felt the Lord in very tangible ways and felt and overwhelming sense of love and care. Not of being under a microscope, poked, prodded and like something is wrong with her.

Okay one more thing. I would love for you to help me out with a little something to bring her encouragement over the next couple weeks while she is recovering. I’m working on something for her. This girl loves cards and notes. In fact, if you wrote her a card 6 years ago, she still has it (no kidding). She won’t get rid of them! She doesn’t have social media and isn’t seeing peoples comments on Facebook/ IG, so would you take a quick second and just send her a message in this form below with an encouraging word, or bible verse? Maybe even if it’s just about what you have prayed over her or how her story has impacted you. I’d love to take these words and make a book of blessings with your name attached to it (like a guest book or sorts) for her to look back on and be reminded of how the Lord provided for her. You can message me if you want our physical address, but this little form below will send a message directly to her email address where she can keep it, I can print it off for the book and she can cherish it for always.

Thank you for being a part of our tribe. We love you.

Technical Surgery Details

If you are anything like me and you want detailed answers to all the questions… this post is for you. So just hang with me because I’m going to do a little review for all the newbies joining us. But I’ll include pictures with lots of detail to bring everyone up to speed.

So let’s start with What is Chiari Malformation? Info Source

Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a structural abnormality at the back of the brain and skull. Normally, a large hole in the base of the skull accommodates the connection between the brain and spinal cord. This connection point is surrounded by fluid that can move freely between the head and spine. In someone with a Chiari malformation, the back of the brain (the cerebellum), is pushed down through this opening, creating pressure on the spinal cord and restricting that fluid movement between the head and spine. That pressure leads to a wide variety of symptoms.

Those symptoms may include:

• Headache that gets worse with exertion, including exercise, coughing, sneezing, or laughing. The pain may also be experienced with certain movements, such as bending forward. (Henley was having these symptoms a lot before her second surgery)

• Neck pain, specifically at the base of the neck or between the shoulder blades.

• Dizziness (Henley had a lot of this around age 7 before her second surgery)

• Tingling or numbness, usually in the hands (At age 7 Henley had this in hands and in her feet)

• Unsteady gait (unbalanced, clumsy, she basically looked drunk while walking a straight line. Henley is also currently having trouble with some motor planning things like walking down stairs, getting on escalators and overall coordination)

• Loss of fine motor skills (handwriting, using scissors etc: Current issue)

• Choking on liquids (Henley struggled with this at Age 2 & again at age 7)

• Spine deformity (scoliosis)

• Speech Issues (Current Symptom)

• Difficulty swallowing (Henley had increased swallowing issues before her second surgery, she would chew on food and eventually just spit it out because it was hard to swallow)

• Gagging or vomiting (Just about every single feeding from 18mths until her surgery involved gagging or vomiting)

• Developmental delays

• Failure to gain weight (Henley was considered “Failure to thrive” when she was a baby because she couldn’t gain weight no matter how much we fed her)

Other symptoms that Henley had that were not official documented “Chiari Symptoms” were:

• Seizures (we believe this was due to the amount of compression on her brain stem. This completely resolved after her second surgery and we have not seen one since

• Cognitive “cloudiness” After Henley’s second surgery it was like a curtain was pulled back and she was able to mentally process things so much faster. She had more words to say, spoke clearer and faster and seemed to have a lot more energy.

What does the Cerebellum Control in the Brain? Info Source

The cerebellum has several functions relating to movement and coordination, including:

• Maintaining balance: The cerebellum has special sensors that detect shifts in balance and movement. It sends signals for the body to adjust and move.

• Coordinating movement: Most body movements require the coordination of multiple muscle groups. The cerebellum times muscle actions so that the body can move smoothly.

• Vision: The cerebellum coordinates eye movements.

• Motor learning: The cerebellum helps the body to learn movements that require practice and fine-tuning. For example, the cerebellum plays a role in learning to ride a bicycle or play a musical instrument.

• Other functions: Researchers believe the cerebellum has some role in thinking, including processing language and mood. However, findings on these functions are yet to receive full exploration.

What does your brainstem do? Info Source

Your brainstem sends messages between your brain and other parts of your body. Your brainstem helps coordinate the messages that regulate:

• Balance.

• Blood pressure.

• Breathing.

• Facial sensations.

• Hearing.

• Heart rhythms.

• Swallowing.

So now you know why those things are super important, the rest of this will make more sense. This first picture is a NORMAL brain. Source: Science Photo Library

Okay so let me get into some imaging to show you what Henley’s brain actually looks like. Below are pictures of Henley’s brain AFTER her first surgery in 2012 when she was 2 years old. Each year I went in to our local neurosurgeon telling him that while yes, she had stopped vomiting every single day and a few things had certainly improved, we still felt like there were some issues but weren’t sure what to attribute to. We went year after year with basically the same response. “These things aren’t Chiari related”. It made me feel defeated and like I was crazy.

In 2016, I knew in my gut that something was not right. So I set out for a second opinion and wanted to find the most knowledgable person I could in the world of Chiari to talk to. We met with tons of professionals, had sleep studies, swallow studies, speech and occupational therapy evaluations, MRIs, CT scans, X Rays and ended up in New York sitting in front of Dr. Greenfield in December of 2016. All of our speculations of this actually being “Chiari related” were validated and surgery was scheduled for a few months later. Here is a before and after video of what Henley’s brain looked like pre-and post op in March 2017.

Here is one of Dr. G’s PA’s showing the before and after images of Henley’s brain from March 2017 - June 2018

Here is Dr. G explaining what he sees on her MRI from Oct 2022

So what is the surgery going to look like this time? Basically if you watch those two videos back to back you can see how great everything looked in Henley’s brain in June of 2018 (1 year post op) so the plan is to repeat the same surgery and get things back to the way they were then and hopefully they should stay this way for the long haul.

Why was there a change from June 2018 to October 2022? Well the simplest answer is that she has doubled in size since she was 7 years old and with that comes brain and skull growth. With Chiari, that is the issue, the brain needs more room sometimes than the skull will allow, therefore it causes compression of the brain up against the brainstem which causes all kinds of symptoms and that is what we are dealing with currently.

He talked about ossification of the dura tissue in the video, what does that mean? Simply: The definition of ossification, or osteogenesis, is the process of bone formation.

What is the pericranium? The membrane (or periosteum) which covers the outer surface of the skull. This is where they harvest tissue from Henley’s own head to create a “patch” that will be used to help create a larger space for her brain. Sometimes they use cadaver or bovine tissue, but being able to use your own tissue (analogous tissue) is ideal because you have less risk of rejection. They will be using this tissue again but Dr Greengfield feels much more certain that because of her age that hopefully the tissue is less osteogenic (full of stem cells that are set on creating bone).

Just because I have an actual picture of this, here is a picture of Henley’s skull in 3d. Kind of wild, I know. But if you look, you can see the half moon shape taken out of the bone at the base of her skull. This is where they have removed bone and will remove a little more bone this go round to allow more space back there. This hole and the fact that Henley is missing part of her C1 vertebrae is the reason she can’t do things like trampolines and jerky rollercoasters. Not a great idea if you are missing skull bone in that area that provides protection around your brain. Keep in mind, you have a layer of muscle over this area and then she has the “patch” that will be sewn into the covering around her brain. So it’s not like her brain is just fully exposed here.

All of these things to say, they will be repeating the same surgery as last time and going in to help relieve the pressure being put on her brain stem by her cramped cerebellum. It is possible that once he is in there he may choose to cauterize some of the cerebellum tissue if it does not look healthy but we won’t know that until Wednesday once they are in there.

Pre-Op and Surgery details (Part 1)

After we scheduled the surgery and had already put things in motion we found out that because of Presidents’s Day and Dr. G being out of town on a skiing trip with his family, if we wanted to have any opportunity to really sit in front of him and ask a bunch of questions and talk through the surgery at length, our only chance was going to be the Thursday beforehand. So we decided that Henley and I would make a quick trip up and give her a chance to have some fun before surgery. If you know me well, you know that I make it my goal to infuse fun in at every opportunity. It’s a technique I affectionate refer to as “sandwiching” LOL. I like to sandwich all of the crappy stuff Henley has to endure in between some fun (or at least more enjoyable) stuff.

Case in point, last week when we had to get blood work at home (PRE-Pre-op bloodwork) I kept putting it off and Henley kept saying “Mom, don’t we need to get my bloodwork done?” …… “Hey mom, when are we going to go get my bloodwork?” Finally I was like “Wow, you seem really eager to go have bloodwork done, what gives?” She replied “We always get ice cream afterwards” and gave me the biggest grin. I was like “Okay sister, I can see what’s going on here.”

Henley knows that anytime there is something hard that she has to do, we try to make it quick and then get on with our day. When she has MRI’s, we  treat it like an errand we have to run. “We’re just gonna run downtown and have some pictures made for the doctors and then we’ll get back to our day.” When possible, we go grab lunch or a special treat or do something fun. Overall, it just helps the mental game that so much of this is for kids. I have found that the bigger of a deal I make of something, the bigger of a deal it is for her. She is following my lead….and how I frame these things will leave a lasting impression on her. If it’s daunting, dramatic, drawn out and emotional, then she is going to take my energy and run with it. Then one day she will be an adult and do everything to avoid all those things that feel hard. If I frame it like an errand, it’s no big deal, we knock it out and get on our way. Then hopefully she won’t avoid doctors later on and procedures and bloodwork because of her memory of her childhood. This is a long game I’m playing here.

Here are a couple of videos I did recently on my IG where I showed what it looks like on days we “get pictures made for the doctors”.

This is when we did the final CT scan in December that Dr. G requested.

This was one of Henley’s MRI days that landed on Halloween and so we tried to make it fun and wore a costume (anything you wear can’t have ANY metal in it at all for this to work just FYI)

So back to the appt…sorry this is already a long post. Probably going to need a part 2.

Yesterday we spent an hour with Dr. Greenfield talking through everything. His PA came in and ran Henley through a bunch of Neurological testing to confirm what had been reported and she confirmed that Henley’s reflexes are non-responsive in her legs and her coordination is “sleepy”. She was examining her scar on the back of her head when Dr. Greenfield walked in and I was explaining that Henley hates her scar being touched and she flinches and says “it feels weird”. Dr. Greenfield felt it and he was like “oh yeah, it feels really tight, like her muscle is pulling inward. This can absolutely cause pain”.

Dr. G sat down and we exchanged our usual “it’s been a while” and getting a general catch up on everyone.  Even though we have exchanged emails, and phone calls over the past couple months, its just different sitting in front of someone for the first time in several years. We talked about his weekend family ski trip and Henley’s upcoming horse show, my recent appt with one of his colleagues for the stuff going on with my health and we recapped the past couple of years and how things have been up until recently.

He went over some statistics about kids like Henley who have Chiari Malformation and said that sometimes age at surgery can really affect surgical outcomes. For instance, In 2-3 year olds, 25%  of them will need a second operation just because their skulls are still forming and overtime they may need more space opened up. A child who has a Chiari decompression surgery between ages 5-6 has even less of a chance of needing a second surgery. If you are new to this blog, and Henley’s story… Henley had her first Chiari Decompression at 26 months old and a second surgery at age 7. She had incredible results from both surgeries, but symptoms crept back in years later which required the second surgery. It’s been 6 years since her surgery in 2017 and about 6 months ago we started to see the decline that felt familiar and after lots of testing, loads of imaging and professionals weighing in, here we are again. Surgery is in 5 days.

Dr. Greenfield asked Henley how she was feeling about things and if she noticed things being different verses 5 years ago to which she replied “kind of”. It’s hard for kids to even be this self aware sometimes right? They don’t go through life examining their words and how they articulating their “s” and “r” sounds, They aren’t focused on how they are walking and if they are cutting with scissors or writing like they used to. They just live their life. If their friends are running, they run with them, they aren’t noticing their leg weakness, they just know they get tired and need to sit down and take lots of breaks. Kids are really good at compensating for areas that aren’t working well, and they adapt.

Dr. G addressed several of my technical questions about the surgery and he went over her imaging to make sure we were all on the same page. I think he could sense my need for reassurance that we were making the right call and he gave me that. He said he would prefer there to be a bit more cushion of fluid around her brain and assured me that this is not experimental procedure and that he was not stressed at all about this decision making process at all. He assured me that the team would take care of her and keep her safe, that they would get her in and out and back to her routine as soon as possible.

With that, we said our goodbyes and headed straight to the airport to catch a plane to Houston for Henley’s horse show this weekend.

Update, Surgery Date & another Brave Day!

I can not even begin to unpack all that has happened over the past 15 days. I feel like my life shifted into hyper drive the minute we were told Henley needed another surgery. The logistical circus of planning a major out of state surgery is mind boggling. I spent an entire week making phone calls to teachers, administrators, extracurricular instructors and therapist in effort to come up with a plan and a time frame for all the things. The plane tickets, lodging challenges in Manhattan, insurance hurdles.... its a lot. In addition to that, the girls competed in a horse show. More on that later.

Since posting my last post, I have heard from literally hundreds of you. It's overwhelming in the best way and I know that the Lord is using you to remind me that He is right here with us in the mess. So thank you. Thank you for reading all of my words and going down this path again with us. More than anything, thank you for praying.

Several of you remember that 6 years ago, this very month, we decided to do a fundraiser for our trip because of the enormous cost involved in a surgery like this and all of the things that insurance does not cover. A friend of ours gave us the idea of selling t-shirts to raise money and to ask people to wear the shirts on the day of Henley’s surgery in support. Adam and I sat in the waiting room in New York while Henley was in surgery and were reminded over and over again that even though we were a thousand miles away from our family, our support system and our home, our community was back at home standing with us. The Lord used you that day, in ways you may never even know this side of Heaven. Thank you.

As the Lord does, He often shows us just how small our faith is and orchestrates things we could never make happen on our own. During that time, we raised more than enough money through your personal donations, church matching gifts and buying of Brave merchandise, that we took the leftover money and started an official 501c3 non-profit to be able to pay it forward and help other families who were in a similar situation. Since then, we have been able to provide financial support and assistance for several families in need and community support for countless more. I think, there is no time like the present to do it again! So we are going to order another batch of Brave Shirts NEXT WEEK. If you don't already have one, or need a new size because your child (like ours) has doubled in size since they wore one, you can go right now to www.bravecampaign.com and purchase a Brave shirt to wear alongside of us on Feb 22nd in support of Henley.  The proceeds from the sale of your shirt (or donation if you don't want a shirt) will go to Brave Campaign and the funds will be used to support families in need. And as the Lord does in His perfect timing, just this past week we have learned of two families whose children will also be having brain surgery in the next 6 weeks and are in need of support. Would you help us knock it out of the park and do some big things for these families?

SOME IMPORTANT DETAILS:

1. If you would like to get a Brave Shirt in time to wear it with us on Feb 22nd, your order HAS to be in the system by midnight on Jan 26th. That is ONE WEEK from today. We have to have our order placed with them by January 27th to guarantee that we can get them out to everyone before we leave for New York. (If you would like to help us distribute shirts, we will have some pickup locations that need a person to handle those)

2. We have had the question before in the past if we can run a custom color for an organization to wear (aka, baseball team colors, business logo colors etc). We can make this happen, but there is a minimum order for colors outside of our usual purple and white. Please email us at bravecampaign@gmail.com to discuss.