Another Brain Surgery for the punch card….this time it’s for me.

I’ve avoided journaling about this because I haven’t known what to say about it. I process my feelings about things through writing, more so than talking and so sometimes I just have to get it all out  to even know what I think about something. So many of you have been on this journey with our family for many years and you’ve had a front row seat to our lives because you’ve read along as I processed through what the Lord has walked us through. This next thing is no different.

For the last several months it’s been all about Henley, her third surgery and all that came along with that. But I’ve been holding on to another piece that has just been rattling around in my head that I wasn’t ready to even verbalize because I haven’t carved out the mental space to even begin to process through it.

I’ve used my blog to create a family history book for our children. I’ve taken this blog and put into a physical book for my children to go back to and remember trips we’ve taken, things The Lord has walked us through and memories we’ve made through the years. My desire is to write it all down, the good and the hard for my children along with my commentary about each moment so they can have a more complete picture of their life events. I also wanted Henley to be able to go back and have an explanation for every decision Adam and I made along the way of her medical journey and also give Haven & Zane background information to the things we were experiencing as they grew. Maybe this will help them to give us an extra dose of grace in our parenting.

Some of you know that I’ve had some health challenges right alongside Henley through the years. I’m certain there are parallels to the emotions involved in her things and how that has played its own role in how my body has processed the stress, trauma and pure exhaustion we have all experienced along the way. As moms tend to do, we put ourselves on the back burner until there is no way we can continue functioning without addressing our own issues. So here we are.

I’ve reached this place a couple times over the last decade. Most notably right after Henley’s second brain surgery in NYC when they discovered the “kidney mass” I had was actually a massive aneurysm that needed immediate intervention to save me from a potentially catastrophic rupture. The Lord has always gone before me and walked me right into the places I needed to be at just the right time and I’m thankful He is doing that once again.

About a year ago I felt strong in my spirit that I needed to have some brain imaging to check for potential issues in my arteries and veins. I met with a doctor who helped to get me approved for imaging on my brain just to “check things out”. There were several findings but the one that was most concerning at the time was an “infindibulum” in my brain behind my left ear. In normal people language… it’s like a pre-aneurysm. A out-pouching of an artery that needs to be observed but is not yet an aneurysm. Given my history of Ehlers Danlos Syndrome and High blood pressure, and the fact that I’ve had an aneurysm already in my kidney that required two surgeries, I was advised to have a consult with a vascular neurosurgeon. That happened the week before Henley’s surgery when we were in NY with a colleague of her surgeon. During that conversation he said that based on several factors, it was a good idea to do another set of imaging called an MRV to go with my MRA and MRI. He told me then that if they found anything that needed “intervention” (surgery) that he would refer me to a specialist in interventional neuro radiology.

A few days after Henley’s surgery in February I went in for the imaging on my own brain. Within 48 hours I got a call from the new surgeons office saying that they would be taking over from here. I knew then that they had found something else but didn’t know for sure what it was. It took several weeks of missed phone calls to get on the phone with the doctor but when we finally spoke he spent 45 min on the phone with me explaining what he found. It explained so many of my symptoms that I didn’t even realize might be related and he said he felt I might be a candidate for surgery based off  the criteria. I asked him how long I could go before needing to have the procedure and he said it was dependent on me and how I was feeling but felt if I wanted to tough it out, I could wait until summer to come back up to NY. At the time I was in no way interested in heading back for another brain surgery so we scheduled it for July. It’s too hot in a Texas anyways so not a bad time to leave town.

So here we are. Adam and I are flying up to New York today and surgery will take place tomorrow morning (Friday) SUPER early. If I could ask for your prayers it would be so appreciated. Pray for everything to be clear cut and simple. Pray that the doctor is able to actually perform the procedure to clear the path and open up more blood flow to my brain. There is a 30% chance once he gets in there he won’t be able to do anything. When I asked what my other options were, there weren’t any other than living with my symptoms. Which are: hearing my heartbeat pounding all day everyday in my left ear (where the pre-aneurysm is interestingly enough) blurry vision that comes and goes. Sometimes I see fine and other times it’s hard to make out words even with glasses. Intense headaches that last for days because of increased inter cranial pressure due to blood flow not freely being able to flow to and from my brain. Pray for stable and strong veins and arteries. (Fragile connective tissue is a known complication with Ehlers Danlos Syndrome) Pray for no complications. Last time my “2 hour surgery” turned into a 6 hour situation because of Ehlers Danlos complications) pray for my mental health as I will be awake for part of the procedure. Pray for Adam who will be handling all of it and me. Pray for our kids as they stay back here with grandparents.

Thank you all so much for your loving support. Hoping this is a huge answer to mine and Adam’s prayers for healing.

The last 4 weeks… and other random thoughts

Wow, it’s been a minute since I have sat down long enough to write. It’s a whole mental thing to sit and write my thoughts out and some days I just don’t have it in me. In January our pastor at our church did a series call Soulful in which he addressed our American break neck pace of life and how it’s so contradictory to the life God invites us into. When Adam and I took a little quick trip to Costa Rica before the surgery I read a book called “The Ruthless Elimination of Hurry” and it lined up so perfectly with the series at church we had just finished. I knew this message was meant for me in this season and I wanted to make sure I didn’t miss out on what God was trying to teach me.

It’s hard to slow down. It’s hard to rest. To sit and be still and quiet and leave space open for The Lord. It’s hard to leave empty space when there is so much screaming for your attention. Our culture glorifies busyness and people wear their chaotic schedules like a badge of honor. I don’t want any part of it. I crave more peace in my life. I know that this is a God given desire of my heart and something I’m doing to have to make a priority. This is not a new concept for us, but something I desperately needed a reminder of in this season.

I would say that for several years now Adam and I have intentionally worked towards making decisions for our family that would be more peaceful when given the choice. It started with our decision to pull our kids out of public school and begin homeschooling them. We wanted more intentional time with them, we wanted freedom from our schedules being dictated by a school district. We wanted peaceful mornings and less chaotic routines. We wanted the freedom to travel for long periods of time without being sent truancy letters for our kids missing too much school. We wanted to be the primary voice speaking into our children and not the peers they spent more time with at school.

I know that people either look at us like we are nuts for homeschooling or they envy our freedom. Maybe a little of both. But these are just a series of choices we’ve made through the years. When we didn’t love something, we’ve looked for ways to change it. Keeping the health of our family at the epicenter of our decisions. After all, we only have a few short years with these kids in our home and we don’t want to miss a single moment with them.

I’ve thought a lot through the years about how I got here with my thought process and I know that all of the things that we have walked through with Henley through the years have made a HUGE impact on how we make decisions. When you have a child who has had years and years of crappy things to walk through, and then for a season, things are good…..you don’t waste it. You make the absolute most of those moments. When things are good, you go to Disney. You make that trip to the beach, because you don’t know when the next season of hard will rear its ugly head and you’ll spend more days at doctors offices and in the hospital than outside in the sunshine.

I was talking to my best friend this week and processing some of my thoughts after therapy sessions for Henley and for myself. I told her that, right or wrong, I’m highly aware of the fact that I am always trying to balance the scales for our kids. I am trying to balance out the crappy stuff they all have walked through with things that aren’t so crappy. I’m trying to help them navigate their emotions, their stress levels and their outlook on life, give them a healthy perspective and continue to point them back to The Lord. But I am always worried that I am not doing enough, or that I am missing things and dropping the ball on things that are really important. The enemy is always there to let me know what I could have done if I had just____. Doesn’t this just sum up motherhood? Sigh.

This past month since coming home from the surgery I have tried to shut my brain off as much as possible and just BE. I have had to make the conscience decision to give myself grace and let things go. So when I felt tired and overwhelmed and like I needed a nap, I shut my phone off and I listened to my body. I chose not to beat myself up for all of the things I could have accomplished if I had just pushed through. I have avoided making extensive to-do lists to scratch off and I have severely limited the things I added to the schedule. I have done things that I actually felt like I had the capacity to accomplish and not put unreasonable expectations on myself. It’s been good. It’s been what I needed and I think it’s been good for everyone.

As far as Henley, she is doing incredible. Her head is healing so fast and she is excited to start back to dance and horseback riding soon….maybe a few more weeks on horseback riding. But she is feeling great. She is already back in speech therapy and we are doing weekly Craniosacral therapy treatments to help her work through some of the trauma and aid in the muscle-skeletal healing process for her. She has spent a LOT of hours laying low and doing puzzles, reading books and watching movies while her body heals. This past week she actually got to go on a date with her daddy to dinner and to see the musical Annie. They had such a great time and it was fun for her to get out and do something fun with him. Also, here are a couple pictures for those who are interested in her healing process over the last month. We are so pleased and thankful with how the physical healing is going so far. For those who have asked me this question already….yes, the stitches were removed… by me. And no, there is no parenting handbook that tells you how you are supposed to handle that. 🤢

Out of the hospital!

I wanted to update here and let everyone know that Henley got out of the hospital Saturday and we were able to come back to our Air B&B. My mom has been amazing at helping to create a cozy space that has clean laundry and home cooked meals. I seriously don’t know what we would do without her help. Henley is doing great. Her pain is managed and she is slowly but surely beginning to find it easier to move her head. The neck stiffness is a big hurdle. She is still spending most of her time in bed and our goal this week is to get her up and walking outside somewhere so she can have some fresh air and a change of scenery. We have big goals of going to see a Broadway show if she feels up to it.  Mental health is a big part of healing and we have to be focused on all the aspects to get through this with limited amounts of trauma. In the mean time, we are laying low here at the AirB&B and waiting out the window of time in which we are cleared to fly home. Henley’s appt with Dr G. Is Thursday and we are confident that there shouldn’t be any reason why we wouldn’t be able to fly home on Saturday this week! Man, are we ever ready to be in our own beds. 

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:

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.

New York: Round 1

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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!

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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???

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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

Puzzle Pieces

I work really hard to make sure that Henley feels like she is informed. I am always trying to stop down and be sure she is part of the conversation and that she in on this journey WITH me and not just in the car of her life that I happen to be driving at the moment. Most days are running at top speed and I’m mentally managing what feels like to be a million things at once. When I slow down and look at my children I am met with their simplistic life. They aren’t in a hurry. They aren’t anxious about deadlines or all the to-do’s. They are right here in this moment right in front of them.

Tonight as I was putting Henley to bed I said “okay, so tomorrow…..” and she interuppted and said “eye appointment”.

She knows.

She’s paying attention.

She’s taking it all in.

Did I even tell her about this appointment? Oh my goodness! this is a big one. I need to prepare her for it. So I stop. Slow down, sit beside her bed and we start talking.

“So tomorrow we are going to go have a CT scan of your eyes to see if we can get some more information about why the left one is having some trouble.”

“Okay”

“It’s not long like the MRI’s, this one should be pretty quick, but it’s going to give us a picture that we need to help us figure out the problem. Kind of like a piece of a puzzle that we need to get the puzzle figured out. Does that make sense?”

“Not really”

“Well, think of our health like a great big puzzle with lots of pieces. You know how when you put together a great big puzzle, it helps when you have a few people helping to put it all together. Some people organize the pieces by color or shape, some people look at the puzzle from one direction and some look at it from another direction. We all bring out problem solving skills to the table when we do a puzzle. So in this instance, you are holding the box of the puzzle pieces and the people who are helping mommy to make sense of the puzzle are some doctors. It’s going to be your job to put your pieces to the puzzle on the table and we will figure out where they go and how they fit to make the picture make sense. So every time you tell mommy or a doctor what you feel or what is going on inside of your body, just think of it like you are handing us a puzzle piece we’ve been looking for. Then we will all work together to get this puzzle figured out.”

This made sense to her. She smiled and I know that it’s because she feels like she has a role in her own life, she is not just a spectator. She knows her voice matters to me. She knows she is going to be heard because I am going to silence the world to hear what she has to say. I know without a shadow of a doubt that God equipped me with a strong personality because he knew this girl was going to need a fighter for a mom.
My goal is to empower all of my kids to have confidence in themselves so they will speak up when they have something to say. I want them to know how to advocate for themselves and make educated decisions. I want Henley to know that there is more to life than a diagnosis and that her differences are not limitations but a platform.

Reflection

I have spent the last couple of months reflecting. Slowly walking out of a valley we have felt stuck in since September 2016. One year ago, I was on a train from Paris to Germany with Adam. We had just had the best summer as a family ever. We traveled, had some great adventures, everyone was healthy and happy. We were truly in a great season. 

Through my life there have been times that a word from the Lord has been crystal clear. They have always come in times of my stillness. Either out of desperation or just posture. As our train traveled from Paris to Germany, I sat there looking out the window over the French countryside and the Lord softly said to me "I have given you this summer with your family to sustain you through the next year. Things are about to get hard." In my heart, I knew this was truth. I had been feeling for weeks like my body was gearing up for a battle. It felt unsettling, but I didn't know what to make of it. Of course, I had no idea what was in store for us as a family, I just knew a storm was coming. It was a warning. Said only to me. I felt crazy telling Adam about it. It went something like this:                                                                                                                            

Me: "So, God told me that things were about to get hard."

Adam: {blank stare} "ok, what does that mean?"

Me: "Not sure." 

Several weeks later, God would speak to Adam too. 

The week after we got home from Europe, things with Henley started to unravel. Things weren't right, but we couldn't put our finger on the exact problem. I wasn't shocked. The Lord had just given me an advanced warning that something was coming. It started with a concerned email from a teacher and progressed in ways we never imagined after that. (See those blog posts here Henley Update Part 1 & Henley Update Part 2)

The morning of October 10th I got the phone call that my grandfather had died unexpectedly. I was on my way to a doctor's appointment of my own at the time and my only goal was holding it together until that was over. At that appointment I was diagnosed with mono....again. Something I haven't been able to seem to kick since high school. I've had it come back many times. I had been feeling "off" for a while and this was the conformation that my body needed some serious attention. A couple weeks later, I woke up one morning with a terrible headache. I did everything I could to get rid of it with no success. A few days after that I developed a low grade fever. I spent most of the next few days in bed. I still had a horrible headache I couldn't shake and had now had a fever going on 5 days. A few days later my headache got too bad, I begged for Adam to take me to the Emergency Room one night. I thought my head was going to explode. They did a CT scan and it came back "normal". They drugged me up and sent me home. I woke up the next morning and still had a headache. Day 10 of low grade fever and unrelenting headache and now I was dizzy. I felt nauseous and didn't feel like I could drive a car. We had an appointment for Henley and so Adam drove us downtown for the appointment. 20 minutes into that appointment I had to walk out and run to the bathroom. I started vomiting uncontrollably. I KNEW something wasn't right. We left that appointment and Adam called my doctor. He was very concerned and so was I. The doctor told him to bring me in immediately. After an examination he looked at Adam and said "I want to test her for West Nile. I think she either has that or viral meningitis. It's likely one of the two." Instantly terrified, I asked and he looked at me and said "If it had been bacterial, you would have been dead by now." 

During this time we were still trying to figure out what was going on with Henley. We have doctors appointments and tests and more tests being run on a regular basis. There was so much uncertainty and we were confused what we were supposed to do with the information we were being given. One evening the Lord said to Adam "I took care of her the first time, what makes you think I won't do it again?" No details, just a promise of protection for Henley. 

A few days later we were supposed to leave for our ranch to spend Thanksgiving with family. I still didn't feel well. Irritated about everything, we packed the car. We got in the car and I turned to Adam and said "I do not even want to go to Thanksgiving. I want to stay home. I don't even care that we have nothing planned, I don't want to go." The car was packed, kids in their carseats, dogs in the back ready to go..... so we went anyways. The very next day we lost our precious dog Colby on the ranch. A saga many of you remember if you are friends with me on Facebook. It was awful. 9 Weeks of searching for our precious baby and we never found him. It still makes me cry. 

We left Thanksgiving with one less family member. We would have stayed out there forever looking for him but we HAD to get home. I needed to go to the hospital... again. The Sunday after Thanksgiving I drove myself to the ER at 5:00am. I packed a bag because I just knew they were going to admit me. I thought I had appendicitis. I went in with all of the symptoms and they did a CT scan of my abdomen. The doctor came in and said "Well, the good news it that you don't have appendicitis. The bad news is that they found a small mass on your right kidney." {Insert blank stare} That started weeks and weeks of doctors appointments, more imaging and more questions. 

A couple weeks into December we took a leap of faith and traveled as a family to New York City to meet Dr. Greenfield. We had heard amazing things about him and felt like He might be the answer for all of the things going on with Henley. We spent an hour with him and at the end of our appointment it was determined that a second brain surgery was in Henley's very near future. Adam and I knew that there was something serious going on with my health but we still needed time to figure it all out. We needed more time to get me healthy. There was no way I was going to be able to handle everything with Henley if I was barely well enough to get out of bed myself. We asked for counsel on how long Dr. Greenfield felt like we could wait. He gave us about a 6 month window.  (Here is the cliff's notes of that trip)

We came home, had more doctors appointments. The final specialist I saw (#7 in the lineup)  told me that "I have only seen one other case like yours in my 20 years of working with kidneys. I am pretty sure this is going to end in you having your kidney removed though."  Really??? You have seen ONE other case and your suggestion is just to remove the whole organ? Surely there is SOMEONE in this country who knows what this is and how to deal with it!! We were out of time and out of options in the metroplex. Henley's surgery was in 3 weeks. So I began looking in New York City for someone who could give me a "8th opinion" about my kidney. I found a guy who specialized in non-cancerous kidney tumors. I thought for sure this was my guy. I scheduled an appointment for a couple days after Henley's surgery since we would be up there anyways and this guy was in the same hospital. 

A week later, another emergency. Adam was in China on business. I took Haven to her first softball practice of the season. It was a beautiful, quiet Saturday morning. Zane & Henley played on the playground and I talked with some other moms while we watched our kids practice. All of a sudden that ear piercing scream of your child that stops your heart and all of time stands still. Zane was running towards me holding his arm. I knew instantly it was broken the way he was holding it. It was SO bad. The other mom's knew, we needed an ambulance. My world came to a screeching halt when the realization came over me that I was all alone. Adam was in China, My mom was in Oregon, My Dad and Aunt and Mother in Law and Father in Law....all of them were out of town. I needed someone to rescue me. The ambulance took me and Zane to the hospital, but the girls had to stay behind with total strangers I had just met until my best friend could come get them and take my car home. It was a nightmare. We got to the hospital and it was determined that Zane needed an emergency surgery. I called Adam and woke him up at 3:00 in the morning to tell him the news. 

Two weeks later we left for an undetermined amount of time in New York. Henley's surgery was March 8th. God was there, just like He promised Adam He would be. He took care of her and all of our prayers were answered. Friday morning we left my mom with Henley and rode the elevator up a few floors and went in to meet a kidney specialist. Right off the bat he said "So, what you have going on here is super rare. You've got what we think is a kidney aneurysm. With that being said, I'm actually not the guy you need to see about this. In my head I was yelling "WHAT?!?! You've got to be kidding! I thought YOU were the guy! I researched you! You specialize in non-cancerous kidney masses! This can't get any more specialized than that."  He continued: "But the guy you do need to see just happens to be here and he can see you now. He will be in in a couple of minutes to talk with you. He is a Urologist and a Radiologist and so he specializes in radiology of the kidney and interventional procedures." 

Dr. McClure stepped in the room, shook our hands and began talking. He had looked at the images and was fairly certain he knew exactly what he was looking at. He explained that this was either an AVM or aneurysm off my main renal artery coming from my heart and that there were two risks involved. We talked about the risks and he stated that what was happening in my kidney was on the cusp of needing to intervene to avoid a potentially life threatening situation. He explained that a kidney aneurysm was so rare that even an "expert" in this would probably have only seen 13 of these cases in their entire career and he had seen 4 up to my case. He assured me that for a case like mine they would take a collaborative approach and there would be a team taking this on rather than just one person. 

We went into Dr. McClures office to look over the images on his computer and he started asking me medical history questions and writing my answers down on post it notes. It was all a whirlwind and he said he would discuss things with his team that afternoon and call me as soon as he had some information for me about a possible solution. 3 hours later my phone rang. It was his office calling to schedule pre-op for surgery on Monday.

Monday March 13th. I had had a couple of days to think through the appointment and the things that Dr. McClure had said. I went in for my pre-op blood work and while I was sitting in there I asked the nurse if there was any way I could see Dr. McClure. I had forgotten to tell him something that I felt like he needed to know before my surgery. Again, he happened to be in his office and I walked in and sat down in the chair across from him. I told him that it dawned on me that I had failed to mention a really important part of my medical history. I told him "I have Ehlers Danlos Syndrome, do you happen to know what that is?" He said "yes, a little bit. It's a connective tissue disease." I said "Yes, I just know that it can sometimes make things more complicated and so I just wanted to make sure that I mentioned that to you." He wrote it down and that was about it. I left his office and said "See you Wednesday."

Wednesday March 15th. Both mine and Adam's moms were in New York at the time, as well as my dad. They had all come up for Henley's surgery, which now turned out to be really helpful because the focus had shifted. Wednesday afternoon we kissed the kids and walked across the street into the hospital, just the two of us. We wanted everything for the kids to stay as "normal" as possible. We didn't want them to worry about me and I am certain we down-played the seriousness of the surgery. I was sick to my stomach. Terrified about the procedure. I had spent time the night before crying, begging the Lord not to let me die here in New York. I knew the risks were great. I knew the potential complications and risks of aortic dissection and bleeding out. I even knew of a person my age who had died in a very similar procedure and left their wife and children behind at age 35. I remember specifically crying out to the Lord saying "Please do not let me die here. Please don't let it all end like this. Please don't allow my family to go through any more trauma, I truly do not think they can handle losing me right now." While explaining these feelings to a close friend later, I told them "It's not like I don't trust the Lord here, It's just that I don't know what the plan for my life is. Maybe this is where my story ends. I am fully aware that we have no control and I could die at any given moment. Maybe my entire purpose in life was to fight to get Henley to the right doctors to take care of her." When you think about it, we really don't have any clue what today might bring. I get it, this sounds super morbid and "Debby Downer". I think the fact that my mom seemed to be unusually anxious about me going into surgery was also adding to my fear. It seemed like everyone was more worried than normal. So, here is what happened in surgery that day. I was awake off and on for the surgery and that was horrible....don't recommend it. I kept having people in my face saying "we need you to breathe Leslie!". Yes, I know. We can't just have a non-dramatic event in our lives ever. UGH. I promise It's as exhausting for me live through as it is for you to be reading about.

Fast forward a few weeks. We got home. I was in horrible pain. Literally thought I might die or my abdomen might explode from the pain. Went to the hospital a couple of times. Blood pressure was insanely high and guess what.... The aneurysm was back. SERIOUSLY?!?!? I know. Long story short, we ended up back in New York for a second surgery. Repeat all feelings and anxieties. This time we had at least decided to really work through writing our wills before we left on this trip. At least I felt a little better about what would happen if I died. That surgery ended up being another hard one too, although we came home and were a lot more prepared for the pain of the recovery process. 

A month went on and I was finally able to get into a doctor in the DFW area that I had been waiting to see. Our appointment went really well. In fact, I ended up sitting in front of him for over an hour. At one point he looked me straight in the eyes and said "You realize this would have killed you right?" I told him that I thought that might have been the case but that I thought I was just being dramatic. He disagreed and proceeded to sit back in his chair and tell me that I was his new complicated case. He told me we were going to need to meet again and in the mean time he was going to be doing some research about Ehlers Danlos Syndrome and re-reading through my info and consulting another doctor he was thinking about. So we agreed to meet again. He told me that for now, I was safe and it was okay for me to leave the country to travel to Italy, but that it was extremely important to keep my blood pressure in check from here on out. 

A day or two later Dr. McClure called to go over some recent CTA images they he had requested to make sure that I was actually indeed, safe to leave the country on vacation. We talked for a while and I told him what the other doctor had said to which Dr. M replied "Oh, for sure! This is why we were so concerned and why the procedures took so long to fix. The Ehlers Danlos Syndrome makes this a much more complicated and delicate situation." At the end of our conversation he told me to go enjoy Italy with Adam and that we would follow up in a couple months with more imaging. 

We left for Italy and my plan was to spend some time processing all of this. I needed to write it all out, work through it in my head and leave it here. Writing is my therapy. It's where I go to purge all of the emotions I can't seem work through with words or tears. It's where I turn to help me make sense of all of the feelings. I write because one day my kids will read this. They will read about what we sheltered them from. They will understand why we made the choices we made. I pray that they will read our story and it will give them strength to walk through anything in their path, knowing that the Lord is always ten steps ahead of them. I pray that others who read this feel the same. I've never been more sure in my life that The Lord has me in the palm of his hands. He sees me. He KNOWS my hurt and my fear and my insecurities. He can handle ALL of my questions and my doubts. He orchestrates doctors appointments and "chance" meetings. He gives us the tools we need before going into battle, and He is the calm in the storm. He is good and He is powerful. We need only seek Him and lay our agendas at His feet. 

The Lord gave me a word on this trip. REDEMPTION. He told me that this year will be a season of Redemption. I've heard the phrase "Beauty from Ashes" in my head over and over for several weeks now. I knew it was in the bible, but I honestly couldn't remember where it was or in what context and so I finally googled it. This is what came up:

Isaiah 61 (NIV)

The Year of the Lord’s Favor

1 The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
2 to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
3     and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.

I pray that you will be encouraged. That you will seek the Lord and find Him. I pray you will know that He loves you and trust him to care for you. He is big enough to handle all of your chaos, your steepest mountains and your lowest valleys. 

 

 

 

NEXT UP: An update on Henley since her most recent visit to the ER. 

Post-Op

So now that the procedure is over, here is a run down of what was done. In the previous procedure, the Dr went and emoblized 4 arteries that were feeding the aneurysm using titanium coils. This time when he went in, he saw a "web" of blood vessels that were feeding the aneurysm, that he said he had never seen anything like. They were able to go in and occlude the vessels with embolic glue to neutralize the aneurysm. He is confident that the glue will hold and keep this "web" from feeding the aneurysm for good, however he did say that there is a small chance for "recruitment" from other sources that they may not be aware of, so let's pray that this doesn't happen and that she doesn't have to go through this anymore.

This did cut off more blood supply inside the kidney, so she will still experience the infarcts in her kidney due to the tissue dying off. This is what causes the most pain & discomfort. Amazingly, though, after all of this, he thinks that she will still have around 90% kidney function remaining, so we praise God for that blessing.

Here is the image of her kidney before the procedure:

 

Here is the image during the procedure:

IMG_4894.JPG

 

Here is the image once the procedure was complete: Giant black hole is now gone.

IMG_4895.JPG

 

It was decided before the procedure that they would keep her overnight for observation since she was in so much pain from the first procedure. Being accustomed to Texas hospital, where you have a large private room with a sofa or reclining chair for guests, we assumed that I would be able to stay with her overnight in the room. Once we finally got up to her room around 9:00 pm, we learned that all of the rooms were shared rooms and that no guests were allowed after 9:00 pm. Luckily her dad was in town so I had a place to stay. 

Unfortunately she had a pretty uncomfortable night made worse by a terrible nurse who felt like asking for ice chips and an extra pillow were just too much. Leslie has not been able to hold anything down since the procedure and so having lots of medications on board which her body is not used to having coupled with no foods or liquids has created a pretty vicious cycle of nausea and her feeling pretty terrible. 

She was in quite a bit of pain this morning, so I spoke with the Dr. He said that she needed to be taking Ibuprofen regularly, which is the first time either of us had heard him say this. He also prescribed Toradol just in case the Ibuprofen did not work effectively. She immediately took the Ibuprofen, and after about 30 minutes started to feel some relief. We will keep her on regular doses of Ibuprofen and, as long as it is effective, we will stay away from the Toradol unless absolutely necessary.

In the last hour, she has been able to eat some peanut butter crackers and drink a little Sprite without any issues, so here's hoping that she will be able to keep food down. We both feel like this will help a lot in order to keep her strength up.

Thank you all for the prayers and encouragement. We are both exhausted, but thankful to have this behind us and to be on the road to recovery.

 

Here We Go...

Hey Guys, Adam here, keeping everybody up to date on today's procedure. They just took her back about 30 minutes ago. When asked how long the procedure would take, Dr. McClure at first said "I don't know", but then estimated around 2-4 hours. He did not think that it would take as long as the previous procedure, which was 6.5 hours!

So here is the run down of the procedure. This new aneurysm developed most likely because there was a very small artery that was not seen on the previous procedure, so it did not get embolized. The sac that was left from the previous aneurysm created a vacuum that is bringing blood back into it from this small artery. In this procedure, they are going to go in and fill up the sac with glue or other embolic material in order to prevent any more blood from filling up the sac.

He did say there was a chance that they could get in there and not see a feeding artery and thus not be able to access the sac. This would prevent them from filling it up, meaning that the aneurysm would remain intact. At that point, we would just have to continuously monitor it to make sure that it is not growing. If it did continue to grow to the point of being at a high risk for rupture, our only other option would be to remove her kidney. Please pray that this does not happen as we want this issue to be fully behind us so that it is not constantly hanging over our heads.

Other prayer requests include a non-eventful recovery. The last procedure left her in a considerable amount of post-op pain. Please pray that this is minimal and she is able to make a full recovery quickly. We also need this procedure to be fully effective and for complete healing to take place so that the issue does not re-occur.

I will post an update to Facebook as soon as she is out and we get a report from the Dr. Thank you all for your prayers and support through this long difficult road we have travelled. It is definitely carrying us through.

Leaving on a Jet Plane

Apparently, I have been a terrible communicator about this next trip to New York. It dawned on me this evening when Zane said "Wait, where are you going tomorrow? Why??" {Blank stares between me and Adam} 

At church this morning I am pretty sure I got the exact same set of questions from no less than 10 people. This is generally a pretty good indication that I am not quite communicating like people are accustom to. I've also been getting the "Who's going to be posting updates while you are in New York?" So here are the quick answers to the questions I've been getting asked.

1. When are we leaving? Monday morning....about10 hours from now. 

2. When is the actual surgery? Wednesday June 12th

3. How long will we be there? We are hoping to come back on Sunday the 16th. 

4. Who is going with you? Just me and Adam, although my dad texted me tonight asking if He could come up there too and we said yes. Not going to turn down any help for sure!

5. Is this going to be the same procedure as last time? Well, we are not 100% positive but we think we know what is going to happen. It's a blog post in itself and might be better written by Adam while I am in the surgery.

6. What specifically can I be praying for? We need so many prayers! I know the same God who was with Henley during her surgery in March will be with me in that same hospital. Please pray that #1 I am safe throughout this procedure. I have had WAY too many opportunities to be faced with my own mortality over the past 6 months and all I want is to be healthy and back home with my babies in a week from today. Pray that there are ZERO complications. Pray that the Lord performs my surgery perfectly through Dr. M's hands. Pray that this is the last procedure and that the problem is fixed and aneurysm is neurtralized. Pray for my kidneys to function at 100% even after losing about 1/3 of my my right kidney. {We believe our God is a God of miracles!} Pray that the recovery is drastically different than last time and that the pain is minimal. Pray for my blood pressure to return to normal after this is all over. 

7. Is there anything you need? Well, We are out of Marriott points as we have used the ones previously donated on our hotel from Henley's follow up trip/appt last week. So if anyone has Marriott points feel compelled to donate, here are the details on how to do that: 1. Call Marriott's customer service number 1-801-468-4000 2. Give them our account number: 551276959, the account name: Leslie Thomas and email address: lesliekristen @ gmail dot com and let them know how many points you would like to share. You are capped at sharing 50,000 points per calendar year which. To give you an example, It costs anywhere from about 35-45,000 points for ONE night stay in Manhattan. In addition to this trip we will have to go back at least one more time for follow up appointments. 

Adam will be in charge of updating this blog and Facebook while I am "out". Thank you for how you have loved on our family. We have so much to be thankful for in how the Lord has provided for our every need. 

San Antonio

We always look forward to spending time with some of our best friends. We have been looking forward to getting to spend several days with them in San Antonio just laying around in our hang out clothes, letting the kids swim and play until their hearts are content and staying up way too late talking about everything under the sun over a really nice bottle of wine. We cherish these moments.