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.

New York: Round 1

Over the course of Henley’s life I’ve made it my mission as her mom to try to help her walk through all that she has experienced with a balanced perspective. Sometimes we go through seasons of hard and painful stuff, but if we aren’t careful of our mindset, it can take up permanent residence in our soul. As a mom, I’m doing my best to factor in not only the present moments, but the long term mental recall of everything Henley is walking through during these crucial years in her development. My goal is to help her develop a mindset and attitude towards the challenges she faces that will help her to be able to confidently and calmly walk through hard things while being able to advocate for herself and know what it looks like to trust her God given instincts when things aren’t right.

In our home we don’t  pretend that things aren’t hard. We know that what we are dealing with totally sucks, it’s not fair, it’s painful, it’s uncertain, it’s anxiety ridden and it’s physically and emotionally taking a toll on all of us. But none of that discounts the fact that these times can be really important character building moments. I truly believe that a test makes way for a testimony and the Lord will use our testimony for great things if we let Him. Part of that is being brave enough to speak when it’s easier to stay silent.

When we found out that we were going to have to come to New York early in order to be able to meet with Dr Greenfield face to face before surgery, we decided to add in an extra day or two and have some fun in the city before we spent a lot of it…not having fun. So Henley and I are here packing it all in. We’ve done things on this trip that we’ve never done before and we’ve managed to have a good time. Mixed in with a pre-op anesthesia meeting, bloodwork, and a sit down with Dr G about the big day next week. I’m thankful for a bunch of saved up airline miles and hotel points that have allowed us to infuse some extra days of fun into our schedule.

Now we’re heading back to Texas for one last horse show before the big day! Thank you so so much for all of you who have messaged and texted and who are praying. You have no idea how encouraging it is to hear from people I haven’t heard from in years. It blesses me more than you even know. ♥️

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.

3rd Time is the charm....right???

We got a call from Dr. Greenfield today....

How do you tell your 13 year old they need a 3rd brain surgery? I'm at a loss. This time it's different. It seems harder than before. 

Let me back up....

September 19:  I took Henley in for a well check visit with her new pediatrician (old one retired). We haven't been to a well check in a while because, well, my kids are so rarely sick and in need of a doctor that we just don't go there anymore like we used to. Except when we need things like physical therapy papers signed...which is why we went. 

During that appt, her pediatrician did the standard check up things and became a bit concerned when she was checking her reflexes and could not get any response. I observed the doctor, knowing what she was looking for, continue to carry on a casual conversation with me while she tried more and more tactics to get the reflex response she was looking for. She even excused herself briefly to retrieve another tool so she could check again. She came back, more focused on getting the result she was looking for to no avail. No reflex response in either leg. She looked at me and said "Mom, when was the last time you saw Henley's neurosurgeon?" My response without skipping a beat was "I suppose it's time, you think?" she agreed and said it was probably time for some updated imaging...specifically of her spine.

She continued with her examination and began looking at her eyes. I watched as she was examining and I noticed something that I had not seen before. Her eyes were twitching. How have I never noticed this? Is this new? The Dr says to her nurse to make a note of a Nystagmus....I knew I had heard that before in Chiari literature, but this was a new one for Henley. 

I asked the doctor if she could refer us to someone who could test Henley for POTS (Postural Orthostatic Tachycardia Syndrome) because it was something I had read about being connected to Ehlers Danlos Syndrome and I wanted to rule it out. The doctor said that she could test her in the office, so she did. Within 10 minutes, Henley had another new diagnosis. POTS....add that to the list I suppose. Send a referral for cardiology, send lab orders for bloodwork. Sigh. 

As we wrapped up the appointment, the doctor checked in on several other things. 

Physical therapy? Yes, twice a week. 

Speech therapy? Yes, 3 times a week. 

Any other concerns? 

I don't think I want to talk about any more concerns, this is enough for one day. 

I checked out and called Henley's neurosurgeon's office on the way home. I told them we had some new neurological concerns and that we needed orders from Dr. G for updated imaging. 

September 20: Took Henley with me to the chiropractor and was telling him about our appt the day before. He pulls out his Reflex Hammer to check her himself. He tries, and tries and tries....no reflex response. Then he does some other muscle and neurological testing and says "yeah, probably a good idea for you to follow up with Neuro" and then would not adjust her. 

End of Sept: MRI scheduled for soonest available date- check. 

It felt like maybe that same week Henley's speech therapist asked to talk to me after one of her sessions and said "It seems like Henley's speech seems to be a bit slushy sounding? Have you noticed that?" My answer was yes. But as a mom sometimes it's hard. Listening to your kids speak day in and day out, you just hear what they mean and aren't always listening to the mechanics of their actual speech. A week later Henley's physical therapist said in passing "She seems a bit weaker on her left side today." This is when my mommy brain kicks into high gear and I start paying super close attention to everything. 

September 26: We took a little RV trip to meet some friends in Tennessee that we hadn't seen since February. While we were on the trip the other mom (who also happens to be a nurse) asked me if I felt like Henley's speech was any different because it sounded like things were a bit different since they saw her in February....more red flags.

October 14th: Speech Re-Evaluation test to see where Henley is vs 6 months ago. This result shows about a 50% regression since April. Keep in mind, she has been doing speech 3 times a week for the past 2 years at this point with the same therapist. 

October 31st: Halloween was the earliest we could get in to do Henley's full spine MRI so we did that (in costume) instead of trick or treating and then went out to one of her favorite restaurants. I came home and popped the CD in the computer and immediately knew that things weren't great.... but where was the brain MRI? Why wasn't that on the order? :::insert angry mom face:::

November 1: VERY frustrating conversation with a nurse in Dr. G's office that caused me to end up in tears and using all of my intense momma bear words to get another order sent over for a BRAIN MRI

November 9: Brain MRI, Flex & Extension X-Ray Check

Then we wait...and wait....and wait....

November 15: Henley is working on a project for school and is putting together a poster board where she has to cut things out and glue it on a board. I am not even sure how to explain this, but all I know is that my 13 year old has been using scissors her whole life and when she was cutting paper out for this project it looked like she had never used scissors before. 

Late November: One day I was unpacking a box of Christmas ornaments in the living room and Henley was in the kitchen. She asked me a question and I didn't understand her so I stopped what I was doing, but didn't turn around to look at her because I wanted to just use my ears to see what I could hear. I asked her to repeat what she said and she did.... I COULD NOT understand a single word. Without saying another thing, I looked up at her and she was holding up a plate. It took me 15 seconds to try to decode in my head what she could have been asking me and then based off of my assumptions I answered what I thought was her question. This scared me. Have I been looking at her every time I hear her talk in order to understand her? Have I been using context clues to decode what she is saying? When other people hear her talk, do they hear what I couldn't understand when I wasn't looking at her????

December 1st: Henley and I were in the car together driving to the horse stables and we were stopped at a stop light. I looked over at her and asked "Henley, you have been doing speech therapy for YEARS (like at least 8 years y'all), I feel like you know how to make these sounds correctly, right?" She immediately said "I know in my head the right sounds and I think they are coming out right but then y'all correct me and say it isn't right" ::Insert dagger in my heart here:: to clarify, her speech therapist was very clear in her request with Henley and with me that when we heard the wrong sounds, we were supposed to correct it on the spot so she could make a mental note and re-try it immediately. 

I told Henley then, that this is why we were doing all this testing, because I had a hunch that there was something standing in her way from making the right sounds and that I felt like she KNEW how to do it, she just had a physical barrier that was making it harder. 

December 9th: Phone call with Dr. Greenfield in NY. We told him everything that had happened up to this point and expressed our concerns, but were asking for his professional opinion based off the images. He said that her images showed that their was still a bit of compression on her brain stem and that while it wasn't significant like it was when he operated in 2017,  it still wasn't "nothing". He told us about another patient that seemed like a clone case of Henley that he had just operated on the week prior whose only issue was swallowing. He said that when this patient was 7 she had surgery and now she is 13 and started having those original symptoms creeping back in. He was happy to report that 4 days post op, she was back to normal and the surgery fixed the problem. This sounded eerily familiar. Dr. G said that he wanted one more image to gather one more piece of information before making any decisions on what to do next. He wanted a CT scan of her brain. MRI's are great at looking at tissue and organs. CT scans are really great at looking at bone and calcium. He wanted to look and see if it was possible that there was an abundance of calcified scar tissue on Henley's brain where her previous surgery was and if that was causing extra pressure on her brain. We agreed to not make any decisions until we had that information and we would circle back after the images were done. He said that, when a 2 year old has surgery for Chiari, they almost always have to go back in and do a second surgery at some point, just purely because of their growth and development being so drastic between that age and when they are finished growing. He said at 7 years old, a child is still fairly early on in development and there is still a lot of growing left to do which can make the brain like a moving target of sorts. I would say that Henley doubled in size from age 2 to 7 (between 1st and 2nd surgery) and now we are 5 years past surgery 2 and she has doubled in size again. Henley is now 5'1" and catching up to me fast! So it makes logical sense that this might be part of the equation here. 

December 16th: CT Scan. I immediately sent the images off to Dr. G when we got home and we waited. We messaged each other back and forth a bit before we could connect on the phone.

January 3rd: We were finally able to connect with Dr. Greenfield and his PA on the phone. He started out the call reviewing what he understood to be the situation at hand based off of our correspondence and said that based off the images from the CT scan, it gave validity to the things we are seeing on our end. He said that the CT scan did show a considerable amount of calcification on the scar tissue and this could be the reason for her symptoms. Her brain stem is compressed, and Dr. G feels like Henley could benefit from another surgery. 

So here we are, sitting in this decision. We've had lots of conversations, talked with Henley and ultimately scheduled surgery for Feb 22nd in New York. 

There are more details to come, I have lots more to say, but that is all for now. Please keep checking back here for updates if you want to follow along. More than anything we beg of you, your prayers. Prayers that this is the LAST surgery she will ever need. Prayers for Dr. Greenfield, that his hands will be steady and do JUST ENOUGH and no more. Pray that her speech is restored and she is able to function like everyone else her age. Pray that all the complications she is experiencing fall away like scales from her body. Pray that she experiences The Lords presence like never before and that she feels safe and secure, knowing that He is her ultimate protector. Pray for us as a family, that we stay healthy, mentally, emotionally and physically through this process.

If you are reading this, we consider you a part of our tribe. We love you and are so thankful for you. 

Leslie

Infection

Well, I was almost positive we were in the clear with Henley. Judging by the pictures everyone would have thought so too until last Thursday. I noticed things were looking a little more red than usual and a tiny spot in the incision looked like it was trying to split. I called Dr. Greenfield's office immediately and sent them a picture. They said if she was not running fever, or any puss was coming out of it and there was no enlarged area on the back of her head that looked like fluid collection then we just needed to keep it really clean, dry and watch it very closely. 

We followed all of those steps and its looked worse and worse day by day. Yesterday we hit a breaking point quite literally. The incision opened up and began bleeding yesterday. Henley came home with blood on the back of her shirt and several times the blood would clot and then open up and start bleeding again. We sent more pictures yesterday and asked them what to do. Dr. Greenfield called me personally and we talked for a little bit on the phone. He said that after seeing the pictures, it was clear that it looked as if it had almost healed completely and something has happened to "make it angry". He was concerned at the level of redness on the lower of the two incisions and said that it looks infected and we need to treat her with antibiotics to try to quickly get this under control. He said we did not need to go to the hospital, but to just get on the meds 4 times a day for 7-10 days and he wants me to send him photo updates daily so he can watch it with us. 

So that is where we are at as of now. We had planned to leave town this weekend but have cancelled all of our plans to stay close to home and near a hospital should anything change beyond this. Please keep Henley in your prayers and pray that she does not start running fever or anything else decides to leak out of the incision. I have seen people get flown back to NYC for things like this and so it makes me a little bit nervous. 

Peace out PICU!

We are so excited to have been released from the PICU. Henley is actually OUT OF THE HOSPITAL. We are kinda shocked, but she is doing remarkably well and although she is still on some pretty major drugs, we are able to manage the pain without IV meds. We have moved her back to our little hotel across the street from the hospital and are planning to have a peaceful and uneventful recovery for her here over the next week. Our main concern is keeping germs off of the back of her head so we are doing a lot to keep hands clean and use the topical medications we have on her incision site. We also have to work with her on moving her neck and head because her neck is very stiff after the surgery. We are encouraging her to look SLOWLY from side to side frequently. Henley has a follow up appointment with Dr. Greenfield at the end of this next week and then we should be released to come home over the weekend. 

New York is expecting a Blizzard on Tuesday & Wednesday so we are excited to see this place covered in snow! 

We have changed out plans a little bit and decided to stay put in this one hotel until we come home. So our address for the rest of our time here is: The Helmsley Medical Tower 1320 York Ave # L, New York, NY 10021

Top 3 Questions I get asked about Henley:

I realize some of you want more details than just the "cliff notes" version and it just dawned on me that I hadn't written anything about the actual surgery that took place and the details of that. I also tend to get the same 3 questions about Henley over and over so I figured, it might be easiest to just address all of those questions in this post. 

1. What did they actually do in the surgery? Well, they first shaved the back of her head. Then they made an incision down the midline of the back of her head. They had to cut through the neck muscles first before getting to the skull, then they were able to access her brain through the area they had removed at the base of her occipital bone in her previous surgery 5 years ago (yes, that means she has been missing bone on the back of her head all this time). Once through the muscle and occipital boney area, they reach the dura (the covering of your brain). They cut through that and were able to get a good look at everything from there. Once they were inside, they determined that her herniated cerebellar tonsils were still healthy tissue and so they choose not to resect those (i.e. cauterize that part of her brain that is falling below her foramen magnum). He felt that he was going to be able to give Henley's brain the space that it needed by sewing in a patch to give her brain some more room to breathe and for spinal fluid to flow freely. There are many approaches to this and where the "patch" tissue comes from. Some surgeons use bovine tissue or other animal tissues. Dr. Greenfield was able to use Henley's own tissue by harvesting tissue from another area on her brain and then placing it over where they had cut the dura. 

So think about it like this, when you get a new pair of jeans and the knees are really tight, then over time you wear out the knees of your jeans and they fit looser or sometimes you rip them and have to sew in a patch. It's the same concept. Henley's brain is just too big for her skull and so in order to keep spinal fluid flowing, they needed to free up some space so that she doesn't have a fluid collection on her brain or in her spinal column. In the first surgery when she was two, they thinned out the lining of the brain (the dura) in hopes of giving her brain casing more elasticity so it wasn't so tight in there. That worked for her for a good 5 years but things change as children grow and so it's a moving target. This time we had to sew in a patch to give more space.

2. What kinds of symptoms was Henley having that caused you to start investigating? Man, if I had a dollar for all the times this question was asked! Here is a list:

* Speech Difficulties. As in, it became physically difficult for her to get words out of her mouth. She would sometimes mix up letters in words that she had been saying for years or not be able to say things clearly that she had always said before like "foot". By the end of the day she was so exhausted from a day of talking she just wanted to be quiet. Over the summer, we noticed ourselves asking Henley to repeat herself over and over because we truly could not understand what she was trying to communicate. 

* Trouble walking. Henley has always gotten overly tired and had trouble walking long distances, but she began tripping and falling a lot. One of her teachers noticed her trip over her feet about 4 times one day while she was walking with assistance from one room to another. She described this as if Henley's brain wasn't telling her feet to move as fast as her body was trying to walk. It became pretty apparent that this was happening more and more frequently and she seemed to just get more clumsy and would be bruised up all the time from one thing or another. When we tested her for physical therapy and occupational therapy, it was even more obvious that she was really overcompensating for basic tasks she couldn't do. For instance, walking a straight line or balancing. This girl would fail any and all sobriety test just walking "normal". We learned that she appeared to the average person that she was just like other kids because she would speed up the activity to make it look like she was able to complete something, but when we slowed her down, she could. not. do. it. She would get so frustrated and cry because it was like her body just wasn't cooperating.

* Difficulty Crossing Midline. This comes into play when you are trying to do things like driving, writing or basically anything that forces you to cross one part of your body over to the other side. Like moving your arm across your body to the other side to grab something. Henley would just overcompensate and do everything in her power to avoid crossing midline. This is a sign that your right brain is not communicating with the left side of the brain. This also can affect the top of your body not talking to the bottom part. For example, jumping jacks? hilarious. (sorry that was terrible) 

* Daily Pain. At school, you would have zero idea because Henley hides it so well. She doesn't want the attention and she really doesn't know what "no pain" feels like. Every. single. night. for months and months she would need an ice pack at bedtime and complain of a headache, leg pain, back pain etc. By the time she had finished holding it together for a day of school, she would just let it all go when she came home. Some days even though she really wanted to go outside and play, she would just lay on the couch while everyone else would go play in the backyard. 

* Trouble Swallowing. We started noticing that she was physically having trouble swallowing certain foods and sometimes would chew and chew on something that she had eaten forever (i.e. grilled cheese sandwiches) and just end up crying because she couldn't seem to swallow it and would have to spit it out. It was heartbreaking. She would chew on simple things like bread and then it was like watching her try to swallow rocks. During a swallow study, we learned that she was overcompensating by drinking out of straws and when we took the straws away and tried to have her drink from an open cup, she would choke. 

* Tiring Easily. Henley just started getting less and less able to handle walking any distance. She would ask to be carried or to ride in a cart constantly. At Target, the grocery store, pretty much everywhere we go, someone was needing to carry her. She is 7...not a toddler. 

3. What about that "other situation" you talked about? You said there were potentially two problems and this surgery was addressing the most pressing issue. So here is the story on that. It's hard to explain in words but I'll do my best. If you look at Henley's MRI from right to left you will see her cerebellum and the herniated cerebellar tonsils that travel down next to her brainstem. Then you see her brainstem in the middle and then her odontoid on the other side of her brainstem (looks like it's at a 45 degree angle). This angle changes when you move your head up and down. It's basically a joint. Henley has Ehlers-Danlos Syndome (EDS) which is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. Collagen is kind of like your body’s glue -it is what holds your skin, joints, blood vessels, and other major organs in place. It typically presents itself in childhood or young adulthood with hypermobile joints prone to misalignment, stretchy skin that tears easily, and fragile blood vessels prone to cardiovascular complications (such as aneurysms). Loose ligaments can misalign the proper angle of the odontoid bone causing it to push backwards, compressing the brainstem. Chiari Malformation is a downward displacement of the cerebellar tonsils (part of the brain) that puts pressure on the cerebellum and brainstem from the other side, progressively damaging them over time, and blocking the flow of cerebral spinal fluid (CSF). So, if you understand what I just wrote then you understand that we basically have two potential problems that cause compression of the brainstem. One is on one side and one is on the other. The reason for her surgery this past week was for the Chiari and what it is doing to the spinal fluid flow and the compression from the back of her head to the brainstem. Often times when you do the Chiari surgery to remove the pressure on the back side, it causes even more instability on the other side. SO, all that said, you have to have a surgeon who understands both of those issues and how one effects the other so that they can take all of that into consideration. There is a very real possibility that one day down the road Henley might have to have a Craniocervical fusion. It's an awful procedure and we want to pray against this for her. So please, every time you think of Henley or our family, pray against any instability in her spine and head. 

So, there you are. Those are the most commonly asked questions I get and there are your answers. 

Update on Henley from Adam

The situation in the ICU is such that there is really only room for one parent to sleep in the "room", which is really just an area sectioned off by a curtain, so I went back to our hotel to sleep for the night. As expected, neither Henley nor Leslie got very restful sleep last night. Today, Henley has improved some. She was able to eat a blueberry muffin and drink a little water without any issues, which is a big step in her goal of getting to eat a cupcake. The physical therapist came in and we were able to get her out of bed and walk for a little bit, which went really well. She was then able to sit up in a chair for about hour before climbing back in bed. She also got a visit from her little buddy, Darby, which livened her up immediately. 

As you can imagine, she got pretty worn out from all of the activity and the pain started getting the best of her. We got her some meds and she is resting comfortably now. Continue to pray that she is able to keep food and water down, which is key for her strength, and that the pain is kept at a tolerable level. 

Again, thank you guys for all of the prayers and support. We are truly humbled.

In the PICU

In the PICU. Henley is stable and in and out because of all the drugs. Even with Dilauded her pain is still at a "5". They did mess with her neck muscles quite a bit so that is to be expected. And for those of you who have been holding out hope, they did have to shave the back of her head this time

I am certain I have never seen so many teams of Doctors and Nurses all rounding on one patient. It's rather impressive how many people are constantly coming by to check on her. There is a critical care team, the neurosurgery team, the pain management team and possibly one other group. Each group of people seems to have about 4 people.  

Surgery is OVER in record time

Wow! I mean WOW. Dr. Greenfield just came out and said he is DONE! Like an hour earlier than expected!!

The best way to tell you what happened is to give you the response to the specific prayer requests we asked for yesterday. 

SPECIFIC PRAYER REQUEST:For all of our Prayer Warriors, here is what you can be praying for specifically.

1. Dr. Greenfield. Pray that he has the best nights sleep of his life. That he wakes up peaceful and has unbelievable clarity tomorrow. Pray that Henley's surgery is the best surgery he has ever performed and the results are PERFECT. Dr. Greenfield said that once he opened her up it was very clear what he needed to do in her specific situation. His exact words were "It was not ambiguous at all, there was no question what needed to happen here." Prayers for absolute clarity were answered. I specifically asked how he slept last night and he said he actually slept great. ;-) 

2. Pray that the LORD'S hands are performing the surgery in the place of his hands. I had a friend message me this this morning: "The Lord woke me up in the night and told me to pray for you.  He gave me a vision of himself hovering over Henley during her surgery.  He was a bright light of presence.  He also had a fully armed angel standing guard at the door of the operating room.  I know today and right at this moment he is with you all. I pray that you feel His presence overwhelming you as He sings his songs of peace and love over you.  We love you and are interceding in prayer." We have felt peace in this moment for sure. It's an unbelievable feeling. 

3. Pray that there are NO complications, NO Infection (meningitis is a big risk with this surgery), NO spinal fluid leaks, NO spinal fluid collection or any need for extra blood, and that the time she is under anesthesia is minimal. Dr. Greenfield said that when he got in there that he did not feel like he needed to remove the part of the brain that was hanging down because the tissue all looked healthy. He said that the arachnoid space was all very much intact and therefore she had almost no risk of a spinal fluid leak! There was no need for extra blood and she was only under anesthesia for about 3 hours as opposed to the 4-5 hours we were expecting. There were no complications and everything was very clear cut.  

4. Pray for her heart to be strong, her lungs to be clear, and her brain to function properly. She is healthy and stable. Praise the Lord. 

5. Pray that this surgery is THE LAST surgery she will ever have to have and that THIS surgery will alleviate the need for any future surgeries. (Because this is one of two potential problems she has regarding compression on her brainstem and we are addressing the most important of the two issues tomorrow) This is to be determined, but we will keep claiming that this is all that will need to be done. 

6. Pray for the nursing staff to be EXCEPTIONAL. For them to be sweet and caring, kind, compassionate and that they will go above and beyond to make sure this is a good experience for Henley. So far so good. We are about to head to the PICU and so we are about to really experience the nursing staff now. 

7. Finally, pray for PEACE for us, and for Henley. She is so nervous. She is worried about the pain she knows she is going to be in and we are anxious at the thought of not being able to do anything to make it better. It's unbelievably hard to know that you are willingly walking your child into a situation that is going to cause her a lot of pain. Even when you know it's the right thing to do and that it's the doorway to a much better life. It still doesn't make this any easier. We have had peace. LOTS of peace. God is so good and has surrounded us with exactly what we needed in this moment and on this day. Our good friends from Texas are here with us who have a daughter (Darby) who also has Chiari and sees Dr. Greenfield. They "just happen" to have an appointment tomorrow with him and so were scheduled to be here at the same time. God is in ALL the details!

THANK YOU FOR PRAYING. Keep praying! Now comes the REALLY hard part which is the pain she will be in and all of the IVs and uncomfortable-ness that comes with recovery. We will post more in a little bit after we see her and can get a handle on the situation. 

Love you all. 

Letting Go.

We were able to suit up and go into the O.R. with Henley. They gave her versed i.e. "Giggle juice" to help to make her relaxed before going back. Apparently that is not standard procedure around here, but we requested it because her emotional state is of HUGE importance to us. After all, we are the ones who will deal with the emotional aftermath in all of this and they will get to walk away. 

Going under anesthesia is terrifying for Henley. It is for most people to be honest. However, there is one memory that neither one of us can seem to shake and that is the memory she had when she came out of surgery the first time when she was two. Immediately upon waking Adam and I were right there with her. I leaned down to hug and kiss her and the first words out of her mouth were "I'm so sorry mommy." As if she had done something to deserve all of this. To deserve this pain. I have never been the same. 

We have spent years talking through this, trying to make it okay. It's not. I don't know that it ever can be okay. Those memories run deep and she remembers them even 5 years later. She remembers waking up crying and she remembers being sad. 

I can't even talk about it all without crying. 

Yes, I'm sure I need therapy....we probably all do. 

So, we were able to go into the O.R. and meet a few of the people who are with Henley this morning. We told them that there were thousands of people praying over them today. Henley was really silly thanks to the drugs. They began putting all of the monitors on her, stickers all over her chest etc. Henley started making comments about payback and putting stickers on all these guys when she was done! When it came to the mask and the anesthesia it was again....traumatic. You can see it in her eyes. You can see trauma happening. There are no words for this. I prayed over her and and begged the Lord one last time to stand in our place and keep her safe. We kissed her and were escorted out of the O.R. I lost it when I walked out of the room. The child life specialist was there with us and Dr. Greenfield followed us out of the O.R. He reassured us that she was going to be okay. 

There is nothing that makes this easier. Walking away and handing over the life of your child is excruciating. My only hope is knowing the I left the Lord in there with her and HE is watching over his baby.

The Plan

We just met with Dr. Greenfield and spent about 30 minutes with him discussing everything regarding the surgery in the morning. 

THE DETAILS:

1. We will arrive at 6:00am (5:00am Texas time) 

2. Surgery is scheduled to start at 7:15am

3. Surgery should take around 4 hours

4. Henley should stay in the ICU for the duration of her time here at Cornell. We are thinking she will get released probably on Sunday, give or take a day, depending on how everything goes. 

5. Dr. Greenfield feels like he would like to give Henley a big enough window between being released from the hospital and her post op appointment just to make absolutely certain she is safe to get on a plane and head home. At this point there is talk of that either happening on Friday afternoon (the 17th) at the VERY earliest which would have us flying home Saturday or Sunday, but more likely seeing Dr. G on Monday or Tuesday (March 20 or 21st) to be cleared to come home after that appointment. We don't have return flights home yet so we are just playing all of this by ear.

SPECIFIC PRAYER REQUEST:

For all of our Prayer Warriors, here is what you can be praying for specifically.

1. Dr. Greenfield. Pray that he has the best nights sleep of his life. That he wakes up peaceful and has unbelievable clarity tomorrow. Pray that Henley's surgery is the best surgery he has ever performed and the results are PERFECT. 

2. Pray that the LORD'S hands are performing the surgery in the place of his hands.

3. Pray that there are NO complications, NO Infection (meningitis is a big risk with this surgery), NO spinal fluid leaks, NO spinal fluid collection or any need for extra blood, and that the time she is under anesthesia is minimal. 

4. Pray for her heart to be strong, her lungs to be clear, and her brain to function properly.

5. Pray that this surgery is THE LAST surgery she will ever have to have and that THIS surgery will alleviate the need for any future surgeries. (Because this is one of two potential problems she has regarding compression on her brainstem and we are addressing the most important of the two issues tomorrow)

6. Pray for the nursing staff to be EXCEPTIONAL. For them to be sweet and caring, kind, compassionate and that they will go above and beyond to make sure this is a good experience for Henley. 

7. Finally, pray for PEACE for us, and for Henley. She is so nervous. She is worried about the pain she knows she is going to be in and we are anxious at the thought of not being able to do anything to make it better. It's unbelievably hard to know that you are willingly walking your child into a situation that is going to cause her a lot of pain. Even when you know it's the right thing to do and that it's the doorway to a much better life. It still doesn't make this any easier.

We will have a LOT of time to sit tomorrow and I will be updating this site regularly as we get updates from the Operating Room. Tomorrow I will detail out exactly what they are doing during the surgery. As of this moment it's kind of like a "we need to get in there and see what we are dealing with first" type of thing. Thank you all so much for praying. We love you. 

P.S. Tomorrow is "Brave Day" If you have purchased T-Shirts or anything else from www.bravecampaign.com make sure you wear it tomorrow and any other time over the next several weeks. Post on Facebook and tag us in your post. We are showing Henley all of the pictures and she LOVES seeing all of the photos. If you have not checked out the fundraising site for Henley's Brave Campaign, check it out and grab a shirt, necklace, or bracelet to show your support.

Countdown to Surgery... 5 days

It's sobering to think that one week from today we will be in NYC recovering from Henley's surgery. 

It has been so hard to write over the last couple of months. There have been so many things I felt like I needed to write and process. Things I needed to document for Henley, but I have not felt like I had the mental space to be able to go there quite yet. 

Coming home from New York I felt a mix of emotions. Mostly, I felt peace and validation. I knew that I needed to sit face to face with what is believed to be one of the best pediatric chiari specialist in the world and lay out all of the information we had and see what he could make of it. During that appointment I asked him point blank "Are you the best surgeon to be doing this surgery?" I needed to hear him validate everything my gut was telling me. I needed him to be kind and conservative and compassionate. I needed someone to take the time to explain everything in words we could understand and not give us a plan steeped in fear and uncertainty. The Lord knew what I needed and as always, he provided just that. Since the appointment, I have gone back and listened to the audio recording a handful of times just to be certain I heard what I thought I heard. Are we making the right choice? It's a constant question in need of the Lord's reassurance. 

I have spent hours in prayer over this question. I've ask the Lord to stop everything if this is not the path we are supposed to be on, and all along we've gotten green lights and clear paths. Planning this kind of a cross country trip and operation is no small feat. I've prayed that the Lord give us direction and boldly prayed that He provide ALL of the finances we would need for this trip, and He is showing us that He is doing just that. During one of my prayer times the Lord has reminded me of this verse Eph 3:20-21. "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." HE IS doing more than I could have even thought to ask, and it's pretty cool to watch Him show up in every little detail.

The Lord knows how hard it has been to think about our entire support system being back here in Texas while we are in NYC, but distance is no match for our God. As it turns out, There are several people who will "just happen" to be in NYC the EXACT DATES we are there for surgery for either their work or for a last minute vacation decision. 

Other than the details of actually getting to NY to do this surgery and figuring out all of the things involved in that, there has been a LOT to process emotionally. Several things are new and then a few things that are resurfacing from 5 years ago. This time around we have a 9, 7 and 6 year old to help them process all of this too. There have been many nights I have stayed up late answering questions that Haven had about everything. Her main fear is that Henley will be scared and in pain. Zane is fairly clueless about it all. I am pretty certain he is just confused why Henley is getting so much attention. When I told him his sister was having brain surgery he responded with "What's your brain?" and "What does that do?" Uhm....just controls everything, no big deal. 

Henley on the other hand is having a really hard time. Yesterday was especially hard for both of us. I had taken her to a chiropractor appt that morning and went to take her back to school. While walking with her through the halls she started saying her tummy was hurting and she was nervous. We stoped and sat down to talk about it but she couldn't put her feelings into words except to say she was nervous. Tears started to run down her face and she tried her hardest to pull herself together before sitting down in the lunchroom with her friends. We have told her all along that it's totally okay for her to cry and to ask questions and to talk about it. She has asked some hard questions like "what are they going to actually do to my brain?" and "How do they make the "zipper" (scar on the back of her head)?" 

Sunday morning we sat and talked a little bit about it all and I felt like this was the first time she maybe understood WHY this was all happening. I forget that sometimes when she is being tested for things and we are investigating a specific issue we ask a lot of placebo questions to mask the real questions we need answers to. For instance, instead of asking questions that may lead her into an answer like "Does your head hurt?" We will look at a pain scale and say things like "can you tell me how you arm feels?, your eyes? your head? your elbows? etc" This way she doesn't really know why we are asking and she won't mask her true answer. Because of this she maybe doesn't know the RESULTS of what we found out and what has led us from one step to another. News Flash: She doesn't read the CaringBridge. All she knows is whatever she said and we found out is now the reason she is having this super scary operation. I figured that maybe sharing this info with her is the info she needs to be able to process through what is about to happen. It's also very important to me that she knows that we are doing this FOR her and not TO her and that Adam and I are her warriors and we are fighting with her on the same team, with the same goal. I pulled out her MRI images from the last 5 years and showed her the comparison. I explained the images to her as best I could and told her that her brain was having a hard time "breathing" {translation: Very little spinal fluid is able to get through} and that her brain was so tight in there and this part of her brain needed a little more space so that it didn't feel so squished by its neighbors {translation: Her brain stem is being compressed by the cerebellum and anterior craniocervical junction (CCJ) and needs more room to function properly} So Dr. Greenfield is going to go in and give the brain some more space so that it's happy and no one is squishing each other. 

The rest of our conversation went a little like this: "Henley, so you know how you say your head hurts a lot and sometimes you say that you can't feel your feet or your hands? Do you know that those things are all connected to this part of your brain back here? You know when have trouble understanding you and ask you to repeat things all the time? and how you get really tired when we go to the grocery store and have a hard time walking? Did you know that those things are all controlled by this part of your brain too? You know when you tend to fall and trip some days more than others, you have a hard time eating certain foods or sometimes you say that your eyes are blurry in one eye or another? Those things are all symptoms of your Chiari!" The look on her face was one of enlightenment. Of course! Why didn't I think of this before? She has NO IDEA that all of these "random" things are connected, its just how she goes through life. She doesn't know what it would look like to not feel all of those things. You could see the wheels turning. I said that when Dr. Greenfield goes in and makes some more space for her brain that its possible that those things will all go away. She smiled for just a second at the thought, but then immediately went back into anxiousness. She wanted to change the subject and move on so I let her. I told her we could talk about it anytime she wanted and I would always try to answer her questions. 

I would ask that you please pray so specifically for Henley's fear and anxiety. Pray that the Lord shows up big time for her and helps her work through emotions that I have no authority over in her little mind. Pray that the Lord gives Adam and I discernment to say the right things and to are able to give Henley exactly what she needs to be able to process the things she needs to process at this age. Pray for Dr. Greenfield. Pray that he gets the best night sleep of his life Tuesday night and wakes up feeling amazing on Wednesday morning before he goes in for Henley's surgery. Pray for his family, for his kids to be well and for this to be a peaceful week in his home too. We know that behind every surgeon is person with a life and a family and drama and chaos too. But our God is bigger than all of the things we bring the table and He has control of every single detail. Pray for anesthesiologist, the nursing staff in the operating room, and all of the people who will touch our child in this process. Pray that they are gentle with her and care for her like the angel she is. Pray that she has NO infection and recovers quicker than anyone has ever seen. Pray that she doesn't cry when she wakes up from surgery. {There is a story here, but just please pray that crying is not part of the memory she has when waking up from anesthesia} Pray for Haven & Zane. Pray that they are safe and watched over carefully while we are away. Pray that they have all of their emotional needs met too. Pray for them as they process all of the questions they have and see and experience things they have never experienced before. Pray for them to be well while we are gone, because nothing is worse for a mother than knowing her babies are sick and you can't get to them to make it all better. 

And for us. Please pray for Adam and I to be able to process what we both need to process emotionally over the next few weeks. Pray for us to be able to sleep soundly and for our stress levels. I am personally SO tired and feel like I have been running a marathon since August with no water break. I am so desperate for a break, a moment without drama and total chaos. I am daily fighting the urge to want to run in another direction. I want a beach and a massage and to rest in the sun and float in peaceful waters. I want to read a book for enjoyment and not because I am researching something. I want to be able to turn my brain off and think of nothing, and quite honestly, I am finding it very hard to get there. There has been so much going on in our lives other than just what is just going on with Henley, and I will be having surgery myself when we come home from New York on my kidney. Pray that we can finish this race strong and have a LONG season of rest and peacefulness. Thank you all for praying and for your support. We COULD NOT be doing all of this without the love and support the Lord has blessed us with. I say it all the time, but I do not know how people make it through this life without a church community. It takes a village. Thank you for being apart of our village. 

Prayers Needed.

Preparing for Henley's surgery in March, the neurosurgeon in New York felt it would be helpful to have a "flex and extension MRI" study done. For several reasons this is important information to have. Basically, they want to see what happens to Henley's brain when she tilts her head down and back. To do this MRI they generally have to hold a very uncomfortable position for about 30 min each way. Because it's difficult enough already to get children to be perfectly still in an MRI, this procedure at Henley's age requires her to be sedated. Anesthesia is the absolute scariest thing in Henley's world. But alas, this is part of her world and so sometimes we have to do things that really stink. 

Today I got an unusual phone call from Cooks Radiology about 11:00. The man I talked with said that their neuro-radiologist had just reviewed Henley's scans from September and felt this procedure was going to be too dangerous to do under anesthesia due to the severity of her Chiari. Basically, they are afraid it might completely cut off the oxygen and or fluid to her brain and she wouldn't be able to tell anyone. They went back and forth with our surgeon in New York, but the bottom line is that it's up to the Neuro-Radiologist to make that call. SO, with that said we are going to try to somehow get these images WITHOUT anesthesia and we will have to just get what we can with Henley's cooperation. She is still pretty young to even try doing an MRI without anesthesia so we need some major prayers over her tonight and tomorrow. Please pray for her to have peace and to be able to get this done without a panic attack like we saw in Boston. If she can make it through this procedure, we likely won't have to do sedation ever again for MRIs which would be HUGE for us! 

The guy I spoke with at Cooks was super concerned about Henley and wanted to do everything he could to help make her comfortable with a super uncomfortable procedure. He asked if I thought it would be helpful to let Henley come down to the hospital tonight for a "trial run" and to have a "field trip" of sorts. 

He agreed that we could all eat dinner with our respective families and then meet up at Cooks tonight at 7:30 for a field trip. We are taking all the kids in hopes that Henley can show her siblings around her hospital. Sometimes when we can put her in a leadership role it helps to lessen the fear factor she would normally have. 

So here we go. Wish us luck and say a prayer. Hoping tonight goes well.

The cliffs notes version & the plan

There is just so much information that we have been trying to process through and we have spent the last couple of days trying to do that. I was able to record the appointment in its entirety and so I have gone back and listened to the entire appointment twice just to make sure that we heard and understood everything accurately. 

Our appointment with Dr Greenfield was Thursday December 15th. There was so much nervous anticipation leading up to this appointment. Adam and I were both anxious to speak to this doctor face to face about Henley and hear his thoughts and opinions on what he felt like we are dealing with. Dr Greenfield is one of the top pediatric neurosurgeons in the country, who specializes in Chiari and Ehlers Danlos Syndrome. He even spends a lot of time giving lectures about Chiari to other neurosurgeons around the country. It’s safe to say that this is one of the guys paving the way for the other neurosurgeons in the field as it relates to this condition.  

Dr. Greenfield agreed that Henley’s case is complicated as she has several issues that need prioritizing, with possibly different actions. We discussed her genetic disorder and how that might make the waters a little muddy when it comes to her symptoms. In addition to that, Henley has EDS (Ehlers Danlos Syndrome), which is a connective tissue/joint hyper mobility disorder. I’ll explain why this plays an important role in a more detailed post following this one. However, The cliffs notes version of our appointment was this: Although Henley has two other “co-morbidities” (co-occurring conditions) in addition to Chiari, it does not change the fact that she still has a pretty significant Chiari and substantial brainstem compression that needs to be addressed with surgery. When we asked about the time frame in which this needs to be done, we got an answer of “anytime between now and the next 6 months based on how much she is being affected in her quality of life and how much school she is missing because of her pain." They offered us December 21st which is what I was afraid of, but we declined and told them we really wanted to come home for Christmas and be able to make some plans before coming back up if possible. 

Adam and I were able to talk more after leaving the appointment and I even called back the next morning to clarify some things with Dr. Greenfield's PA. We have taken SO. MANY. THINGS into consideration in choosing a surgery date. We have several things going on in our immediate family that are also "big things" that need consideration. I have personally been having some health challenges that need pretty immediate attention as well and we are working through those to try to get me to a healthy state before taking this on too. Because of this and several other key dates we are working around we chose the date of MARCH 8, 2017. This is the Wednesday before our Spring Break and so this will allow us the most time possible to be up there as an entire family. Being together in this as a team is a very important to us and also for Henley’s morale. This date is set, but with the understanding that if she begins to decline even faster than she is now, we have the option to fly up there if things are more emergent and do the surgery sooner. We are shooting for March though and not before if we can hold out until then. 

We now will be in planning mode and trying to figure out all of the many details that there are to be able to make this all happen. Here are things we are working on, so If you have any awesome hook-ups in Manhattan or know someone, PLEASE email me and let me know. First of all, we are looking for a place to stay for about 2-2-1/2 weeks total. 

The plan is to fly up there on Monday or Tuesday March 6th or 7th. Henley’s surgery would be on Wednesday the 8th and she would be in the ICU for about 4-5 days. Sometime after that she would be released from the hospital to wherever we are staying and we would have to stay about another week before being released to fly home. We would likely have all 5 of us and a grandparent or two up there with us to help with Haven & Zane during their spring break. Dr. Greenfield requires us to stay the extra week because he wants to make absolutely certain that Henley is stable before she gets on a plane and he feels 99% sure that we wouldn’t need to see another neurosurgeon once we got home. 

With Henley being in the ICU its very likely only one of us could stay with her at night so the other parent would have to have a place to stay not in the hospital but near by. We have already checked the Ronald McDonald house and it’s under renovation until June so that option is out. Henley would be at New York Presbyterian / Weill Cornell Brain and Spine Center which is on 70th street and York Ave. Basically, the upper east side of Manhattan on the river. 

With everything being ridiculously expensive up there, we are trying to fundraise with a gofundme along with some other things we are trying to work out that would be available soon. If our story has touched you, we ask that you share it and share the link for the gofundme. We will likely need to raise around $20,000 to cover the things that our Insurance will not cover. It's very stressful just thinking about that number, but we know God has gone before us and he works out all the details.

Thank you all so much for the prayers this week. Here are some continued prayer request for our family: Please keep Dr. Greenfield in your prayers as there is always a person behind the surgeon. Pray for his family life, his marriage and his 4 boys that are ages 9 and under. He is a parent just like we are and has a life and stressors too. Pray that the Lord uses his talents to heal Henley. Pray for safety and COMPLETE resolution of Henley's symptoms after this surgery and for there not to be a need for another surgery after this one. (We do NOT like the idea of the surgery that would follow this if this one didn't fix the problems.) Pray for us as a family. Pray for Haven and Zane as I am certain they will need a little extra love and attention over the next few months with their sister getting what feels like an unfair amount. Pray for Henley. She broke down in tears the other night at the thought of being put to sleep. This is her GREATEST fear right now. She hates it and its terrifying for her. I honestly think this is scarier than the whole brain surgery thing in her mind. Pray for my health and for the things we are facing to be resolved quickly and for me to be healed completely. Pray for Adam. He does such an amazing job of taking it all in stride, but it's a lot. He is working and in school and trying to make sure that he stays balanced too. He has an unusual amount on his shoulders. Pray that we get our dog back. We have been missing Colby since Thanksgiving. He got lost on our ranch and we have tried so hard to find him. It's another heartbreak that we are trying to walk through right now. It just really feels like we are being hit from every single angle and we are trying to stay focused. Thank you all so much for being with us on the front line of this battle. We love you all more than we can say. 

It's Official

It's official. Henley needs surgery within the next couple of months. We are still here waiting to talk with someone about available dates and then will spend the day talking about it between our family and look over our calendars. We will update with more details later, but that's all the info I have for now. Thank you all for praying.

We made it to NYC!

We made it to NYC. It’s been a really long day. Henley had a headache before the plane even took off and so I was worried about how this day was going to go. I used these special ear pressure regulator things to help with that. She seemed to do okay until we landed and got on the ground. Thanks to Just for J, this trip got a major "fun upgrade". Our family was picked as their Holiday Honorary Family and they called us about 2 weeks ago to tell us that they wanted to pay for our hotel and something fun to do as a family while we were in NYC. Our first surprise was that they arranged for us to be picked up from the airport in a sweet limo! The kids thought this was just the coolest thing ever. Our driver was amazing and took on the role as tour guide and drove us through the city down 5th Avenue, Past Rockefeller Center and through Times Square on our way to our hotel. He even acted as a photographer for us once we arrived. We got checked into our room and then went to find dinner and take a very quick walk through Times Square. Here are some of the pictures from tonight but I am adding a couple different pictures just to give you the very real perspective of what it looks like to have Chiari & Ehlers Danlos Syndrome. These are the types of changes we see on a very regular basis. It's sad and hard because there is so very little we can do to impact how she feels. Henley can literally be smiling one minute and miserable the next. She is naturally very happy and generally smiling from ear to ear around people. However, once she is back at home or away from others she will just crash. Because of her extremely low muscle tone, she gets VERY tired VERY quickly after doing what normal children would not even think twice about. Couple this with a Chiari headache that is not easy to manage anyways and you have a mess. So this was Henley after walking ONE BLOCK from our hotel to a restaurant.

Tomorrow is the big day. We are excited and anxious to meet this Doctor. We have had to assure Henley that nothing is going to happen to her tomorrow and that Dr G is what we call in our house "A talking Dr." (since neurosurgeons pretty much only talk to you unless they are in the Operating Room and the kids rarely seem to associate the two since they are not awake when they are operating) We have always been very honest with Henley even when she was 2 years old and make sure that we try to tell her everything that is going on in terminology that she understands. We feel like this is really important and we want her to know that we are going to walk her through every step of this journey and that nothing is going to come as a surprise or catch her off guard. We feel like this will hopefully set her up later in life to not be afraid, but rather to be informed about things to expect and hopefully feel empowered rather than helpless like children can often feel. We have spent the last several weeks explaining that although surgery is likely down the road, it's not happening tomorrow. I will let you know how it goes tomorrow. 

MRI Images and Prayer Requests

This post is for all of my friends out there who are fascinated by MRI images and really want a visual. We have so many of these images and truly, I only understand the parts that I am showing here. However, I am fairly certain that it does not take a trained eye to look at these images and realize that something is not quite right. All that said, I'll explain the little bit I do know anyways.

There is a picture of a "Normal Brain" and this is where I have pointed out where the brain stem is and where the cerebellum is. The arrows you see are pointing to the black space between those very important parts of the brain. There should be a good amount of space between your skull and your cerebellum (to the right of the cerebellum) and between your brain stem and cerebellum (on the left side of the cerebellum). That space is where spinal fluid flows. Spinal fluid is supposed to flow freely all around your brain protecting your brain from impact with the skull when you move. If your brain hits your skull too hard without that protection around it, this is what can cause you to have a concussion. The spinal fluid is supposed travel on either side of the brain stem and down your spinal cord carrying nutrients to various parts of your brain and filtering out the stuff that should not be there. It's basically REALLY important that spinal fluid flows freely and Henley's is clearly NOT. 

The other images are Henley's brain over the years. All of these images are Post-Surgery which was done in January 2012. To most people they probably don't look very different, but it doesn't take much compression on your brain stem or cerebellum to see some outward symptom of some kind. We have been told that often times once you start seeing symptoms, the brain has already been damaged.

So what happens if the spinal fluid can't flow? Well, it chooses the path of least resistance. Often times you will see spinal fluid collect INSIDE your spinal column called a syrinx (aka: syringomyelia...but who can even pronounce that?) A syrinx can cause all kinds of scary symptoms. It can also cause Hydrocephalus. Honestly, its hard for me to even research things right now because I always seem to end up at "can cause death due to brain stem compression". It's terrifying. My baby is walking around right now at school with hundreds of other kids with this much pressure on her brainstem. Just thinking about all the things that could happen are almost too much. It makes me want to run up to school and snatch her up, put a helmet on her and keep her in my house in a bean bag chair with a good book for the next 5 weeks until we can get to New York. But what kind of life is that for Henley if her mommy lives in fear? What kind of faith do I have if this is my response? This is something I am struggling with right now. I am feeling particularly anxious this morning after reading some things and talking to some other professionals who have called to express their concern. I can't tell you how many times I have heard "Do you think she may have had a stroke?" You guys don't know what that question does to me knowing my family history of strokes. One of my grandmothers died of a stroke, so this simple inquisition is a trigger for a much deeper fear. 

So, I am begging you to pray with us. We need an army of prayer warriors right now praying protection over her. Our appointment in New York is on December 15th and yes, this is the soonest appointment we could get. I told Adam this morning that I want to jump on a plane today and just go sit in his waiting room until he can see her. However, I know that God can make anything happen so I am choosing to be patient. I also know that He can protect her in the mean time before that appointment. I KNOW that the Lord is good. I KNOW that he has got her in the palm of his hand. I KNOW that he knows the outcome. I KNOW that he loves Henley more than I can even imagine. But for those of you who know me. You know that not being able to do anything but wait is like a slow death. The waiting is what's killing me. 

Thank you for how you all have loved on our family. We just need the Lord's protection right now.

Numb

So this video happened on Monday 10/31/2016. After being home from school for about 30 minutes, Henley came down the stairs and asked me "What does numb mean?" I asked her why she was asking, she said "I don't know." I said "What do you think it means?" She said "I don't know". I said "Numb is when you can't feel something on your body." She held out her right hand and said "I can't feel my hand." {insert blank stare from mommy} "Uhm. Okay. Well. That's a new one."

A few minutes later we were in the car and she was talking about it some more. I took this video so that I had documentation of this event. I've gotten to the point of trying to catch everything on video because it seems like things change and happen all the time and I want the doctors and professionals we are seeing to see what I see and not just take my word for it. I want as many eyes on her as possible so that its not just "my opinion" of an actual event, rather video proof. 

I have also been recording her to catch some of the new issues we are seeing with regards to her speech. Words she has been saying for years are all of a sudden unclear. A couple days ago, she was trying to tell me about something and I just COULD NOT understand what she was saying. I asked her to repeat herself about 4 or 5 times before I just finally gave up and said "Can you just point to what you are trying to say?" She pointed to her FOOT. I mean... FOOT. She has been saying "foot" since she was a toddler. She is now 7 and I can't understand some of the simplest words. Needless to say, its all very nerve wracking because to me, this screams NEUROLOGICAL and I see giant red flags waving in my face! I am now just praying for the time to pass quickly to get us to New York because I'm not sure how long I can handle watching things get worse. 

Henley Update Part 2

The day after we got home from Boston I called up to school to talk with the school counselor. I expressed my concerns about all of the things we were seeing with Henley and asked what we could do. By the time I got up to school 3 hours later they had already had a meeting with her teacher, principal, counselor & speech diagnostics person. They had information for me and a plan to move forward. Let me just stop there and say that this school our kids go has almost 1,000 elementary students in this building (most schools have 4-500). Let that sink in. These people are so busy and within 3 HOURS of me calling up there, they were already on it! We are BEYOND thankful for the school our children are in. When I walked into the office, most of them already knew what had happened in Boston and knew how defeated I felt. The principal said to me “You know we will help you however we can.” What a blessing to feel this supported in our community. 

I felt like the day we arrived back home began a whole new chapter for me. I now had lots more information, lots more people expressing concern about Henley and I felt like I wasn’t crazy or over analyzing her all by myself. We started down a path of investigating her in every way that we could. We tested did a preliminary speech eval in the school. The Speech Therapist called me and told me that she noticed Henley seemed to have developed a bi-lateral lisp since kindergarten. When I asked her if this was something that commonly developed later in childhood she responded with “Not generally. It’s most common when a person has had a stroke, develops Parkinson’s or has some other neurological complication.” Super…that answers that.

I called and made an appointment with our pediatrician to talk with her about all of the new concerns. We met that week and I laid everything out for her that we were seeing. She helped us get a plan of action together to start checking things off the list. 

First up: Speech. We decided rather than waiting on the school to do a full speech eval, we would have one of my best friends who owns her own speech clinic in the area do a full speech evaluation on her since she would be totally comfortable with her and because she also knew Henley’s entire history since she has been around since the beginning. After the test she scored the results and sat with me on the floor and explained it all. She said “I generally get concerned and recommend speech therapy if a child scores as low as a 10 on this test. Henley is at a -1.”  So there’s that. I guess we add speech therapy to the list of things we need to do now. 

Then we tested her for OT (Occupational Therapy). During this testing, they are looking for complications with fine motor skills and gross motor skills. That seemed to highlight even more issues we had not noticed before. Both fine motor and gross motor were of great concern. This day just keeps getting better. Add OT to the list too. 

Next up was the ENT. We went there to see if maybe Henley’s tonsils were abnormally large and that was causing the recent problems with eating and swallowing. Nope. Normal size. We also addressed the headaches with her doctor and took in an MRI image of her sinuses to discuss. Apparently children don’t really even develop sinus cavities in their forehead until later in childhood. So that’s good to know. The headaches are not caused by her sinuses….because she has none. 

Next up: Allergy testing. We did this to make sure Henley’s headaches were not being caused by something in the air that she was just allergic to. Nope. Not she’s not allergic to anything. 

The ophthalmologist was next. Maybe the newly developed reading problems and headaches were caused by poor vision? Nope. That is not our problem either. She has incredible vision. 

Frustrated about still having some unanswered questions I started writing emails. I emailed the head of the research team for Henley’s genetic disorder and also a Neurologist at CHOP (Children’s Hospital in Philadelphia) that I had email addresses for. I listed out everything we were seeing and asked if these things were related to the genetic disorder or if these seemed more neurological. The response I got from both of those people was that yes, there could be some overlapping symptoms, but these things generally were not coming on later in life, rather had always been present. They both directed us back to our neurosurgeon for consultation. 

I posted all of my questions in our Facebook page for the 16p families. I got an overwhelming response that matched the two doctors replies. “Yes, we do see lots of those things, but not generally acutely onset. I would probably see a neurosurgeon, it sounds like what you are describing is neurological.” one other mother said.

I texted all of my Chiari mom friends and got their thoughts and opinions too. One afternoon I got a call from one of the other moms. We talked for a while and she told me about the new doctor they went to see in New York and how amazing he was. Another one of our mutual friends was traveling there to see him also. I got the doctors information and called his office. Adam and I talked about it and decided to get a second opinion from him. I started gathering information to send to him before we could schedule a phone consultation. 

That brings me to today…

This morning I got up, got ready and was heading out to BSF when my phone rang. It was the school nurse. “Henley is in my office and crying because her back is hurting. That’s a new one. Right?” “I’ll come up there and check it out. I’m already in my car.” I went in and could tell she was kind of a mess. I knew just by looking at her that her back was out of alignment because her shoulders were slanted to one side and she was standing funny. I called our amazing chiropractor and got an appointment. We went home to wait. During the time before her appointment I got a random message from my other friend who sees the doctor in New York. Her son actually just had surgery for his Chiari about 10 days ago. They are still there and she messaged me out of the blue. She said that she had been thinking about me and Henley and wanted to just pass along some info about this surgeon who had done her son’s surgery. I texted her back a picture of my stack of papers and MRI images I was getting ready to send him for a second opinion and asked her if she could call me. She did and we talked for an hour. During that conversation I texted Adam the message she had sent me before our call and he responded. “What do we need to do to get an appointment with him?”. I responded“I think we just need to fly there.”

After our call we drove to the chiropractors office. On my drive I called the doctors office in New York and told them we had changed our minds and wanted to come there to meet with him rather than just talking on the phone. We scheduled an appointment for December 8th and that was that. 

We got to Dr. Haggerton’s office and he adjusted Henley and made her back feel better instantly. He said to me “its kind of unusual for a child her age to have this type of back problem.” I reminded him of the Chiari and he said “Oh yes! Well, all of this is related to the cerebellum so that makes sense.” I asked him about some of the other things we were noticing just to get his opinion on everything from a physiology perspective. He said to me something I have never heard before and its exactly what I needed to hear. He said “Well, this only gets worse as she grows.” He further explained that when we grow our brain stays where it is and our spine stretches out and pulls on the brain. (not his words…he was much more eloquent.) With Chiari your brain is basically “falling out of your skull” already and so it just keeps getting pulled further and further down the spinal column. I asked him that if she were his child, what would he be doing every single day for her. He gave me some great suggestions to feed her brain and give it everything it needs to function properly, but more importantly he said exactly what I needed to hear. He pressed his finger on my shoulder and said “If there is pressure here in your shoulder and its causing all kinds of pain and problems and you keep growing and your arm stretches out and pulls even more on that stressor but you never release the pressure from here (where his finger was pressing), then you just keep having the same problems. You have to fix the source of the problem first and then you can worry about regenerating all the functions.”

Then he looked at me and said “I feel like the Lord wants you to know that you have done everything you can here and you are doing a great job.” “Go see that doctor in New York.”

I feel like I needed to hear everyone that I truly respect in the medical & holistic field tell me that I need to go in a direction. The SAME direction. I feel like the Lord has been so gracious in giving us absolute clarity in the way that we needed to receive it before moving forward. So here we go.