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. ♥️

Reflection.

Isaiah 43:1-3 “Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord you God, the Holy One of Israel, your Savior.”

This verse pretty much sums up the promises we have relied on for the last 6 months. I feel like it’s important to be reminded that the Lord NEVER promised us that our lives will be easy and free of trouble. However, He does promise that we won’t ever be left “alone”. Our faith WILL be tested. The Bible tells us to “rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope!” Romans 5:3-5

So much of what we have gone through has been a relentless testing of our faith. It’s hard to really even grasp what faith truly looks like until it’s put on trial. For me, it has looked like saying over and over “Lord, I don’t have this, but I trust that YOU are 10 steps ahead of me and will provide a way through this firestorm that I can’t even make sense of.”

This has been the hardest lesson for me to learn. Having almost no choice but to TRULY surrender my life and the lives of my children, placing them back into the Lord’s capable hands and stand to the side and release control. To truly trust at my core that HE has got this and doesn’t need my help, rather just needs me to put one foot in front of the other and just. keep. walking. down the path He put me on.

I have said many times “Lord, I DO NOT have the strength, I need you to give me whatever its going to take to get me through this season.” and He has. HE has made us Brave. HE has given us supernatural peace. HE has allowed us to have the perspective we have on life. HE has given us comfort when we don’t understand why things happen the way they do. HE has orchestrated schedules and conversations and and doctors and people to happen right on time. The Lord has NEVER left us alone in this. He has ALWAYS been way ahead of us and provided for our EVERY need. I would be foolish not to be shouting about His goodness from the rooftops.
Someone told me once “God rarely shows up early, but He is NEVER late. He is always right on time.” So true.

A friend shared this song with me about 6 weeks ago and its been our anthem. I pray that you will seek the Lord in whatever you are dealing with and let HIM show you what it truly means to Be Brave.

www.bravecampaign.com

Update: First week home.

We have been home now almost a week. This past week has been a complete blur for me. Most days I couldn't have even told you what day it was, what the weather was like outside, where my children were or what time it was. 

We arrived back in Texas Monday evening. It was about all I could do to make the trip home from the airport. Henley did great. She had no problems on the plane with the pressure and she has been off pain meds completely for almost two weeks. She is seriously making brain surgery look like it was a piece of cake after that first week. They always say children bounce back like you wouldn't believe, but seriously, It's pretty remarkable. The minute we got in the car at the airport I had to take all of my pain meds just to be able to endure sitting one more hour in the car ride home from Love Field. 

We got to the house decked out in our winter gear and it was about 90 degrees outside. In addition to the strangeness of the drastic weather change, walking into our house felt strange. We've never been away from our home for such a long period of time. It was perfectly clean and smelled like home but it took some mental re-adjusting to the space. We dropped our things and Henley wanted to go straight to her room. Her room had been completely re-decorated while we were gone by some of my very sweet friends. The whole room is just precious and I can't wait to share pictures soon. Henley is in love with her new space! I held it together long enough to be super excited with her about her room and then quickly headed downstairs, went straight to my room, put my pjs on and collapsed. I was OUT...for days. I mean literally, I did not wake up again until Wednesday. 

I felt like falling into my bed was like collapsing across the finish line of the longest marathon I'd ever run. I just laid there staring up at the sky....for an entire week. My mom spent the days here with us to help with everything. Laundry, meals, cleaning the kitchen, taking care of kids and me. You name it. She is a rockstar. Adam went to bed Monday night with a fever and spent most of Tuesday in bed nursing a cold. We were both down for the count. Our physical bodies and emotions just completely and utterly spent. 

Wednesday I woke up in a LOT of pain. Adam had been talking to Dr. McClure in New York almost daily. When Dr. McClure called to check in on me on Wednesday, he suggested we go back to the ER to get some more imaging to make sure there was no internal bleeding or new findings. Not wanting to go to the hospital and truly wanting to be able to get the pain under control myself {stubborn}, I spent the day trying everything I knew to get on top of the pain. I finally ended up throwing in the towel that afternoon around 3:00pm and told Adam to just take me to the Emergency Room. I could not understand why I was still in SO much pain and it had been an entire week. I was taking a LOT of very strong pain meds and I still felt like dying might be easier. I took my last two Percocet pain pills and Adam drove me downtown to the hospital. We walked in the door and the minute we told them the story of the past week, they went into high gear. I have never seen an Emergency department move so efficiently {I knew it was possible!}. From the time I walked in the door of the hospital until I was being wheeled into the CT scanner for a CT angiogram was about 15 minutes. It was truly impressive. They ruled out internal bleeding which was our main concern. They checked my kidney function, urinalysis and bloodwork. All came back within normal range {Praise the Lord!}. With those concerns at ease, then came down to pure pain management. The nurses came in and gave me a 25mcg of fentanyl. 15 minutes later I had ZERO relief. They gave me toradol next since it had worked last week...15 minutes later NO RELIEF. They finally came back in 15 minutes after that and gave me 100 mcg of fentanyl and that finally kicked the pain. The doctors concluded that the pain is because of what is called "Infarction" which is tissue death due to inadequate blood supply to the affected area. Most people have heard of Myocardial infarction which is the partial death of heart tissue aka: a heart attack. So basically, it feels like my kidney is having a heart attack. ALL. THE. TIME. Imagine every part of your abdomen from your belly button on your right side all the way around to your spine cramps up so intensely that you feel like you might explode from the pressure. That's about how I have felt for the past 11 days. Well, the good news is... It's just part of my kidney dying. Everything else looks Fantastic! {insert sarcasm here}

If you know me well, you know how much I can't stand medications. I lean towards all things natural and so having to rely on these medications so heavily and be subject to their unruly side effects has been a very hard pill to swallow {see what I did there?}. However, I was thankful to have them and I was thankful they were working. We were able to go home much more relieved Wednesday night and I was put on a very strict schedule of taking my pain meds in exactly 4-6 hour increments {alarm included}. I spent the next two days pretty out of it as you might imagine. Throwing up because of the meds, but needing them to keep the pain under control. Saturday morning, 11 days post-op was the first time the pain wasn't the reason I woke up. I decided to take advil instead and see if that work keep the pain at bay....it did. I went another 6 hours and took another round of advil and so on and so forth. I made it through an entire day without the hard core meds.

Sunday, I finally felt like the fog was lifting. Like I could see clearly for the first time in a week. Slowly but surely I was able to get up and take a shower and get ready to go to church. I was so ready to get out of the house. I expended way too much energy getting ready, but I made it. After church I came home and went right back to bed for a couple hours. I am really hopeful that the major pain has finally subsided and I can move forward without the drugs. Tomorrow I see a specialist at UT Southwestern who is a personal referral from the Doctors in New York. This doctor will be the one following my case from Texas. 

First of all, thank you for praying. We know that we have been on the front lines of a serious spiritual battle this year and we KNOW the power of prayer. Thank you for linking arms with us and praying fervently for our family. We have felt the prayers and there is no other explanation for the way we have been able to walk through this other than the fact the The Lord has provided for our every need. "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 

We are so thankful to everyone who has signed up to bring meals, sent cards and gifts, who have donated to the go fund me site, and have bought t-shirts and necklaces at www.bravecampaign.com you guys are seriously amazing!! You have orchestrated and declared Brave Days at school and on the baseball field. You have overwhelmed us with love and support and shown thousands of people what it looks like to be a part of the body of Christ. You have encouraged our family and carried us through in ways you may never know. Our plan is to take what The Lord has done through our story and turn Brave Campaign into a non-profit and keep paying it forward for other families like ours who need help traveling for treatments and who are facing times where they have to step up and Be Brave. We hope that you will continue to help us by shopping for a purpose at the site (we still have lots of t-shirts, necklaces and bracelets!), knowing that the money from your gifts and purchases will be stewarded well. 

No boundaries for God

God can provide a support system anywhere. Even thousands of miles away from home. He sees and fills every need. A need for Popsicles, cupcakes, a meal or two, toothbrushes your kids forgot, companionship, kid sitting so you can "have a minute", encouraging notes and fun gifts, and a shoulder to cry on. It's been pretty incredible to watch what all God has unfolded in front of our eyes this past week. We are so thankful for the army of prayer warriors who have stood on the front lines with us for so many years. We are not done with the drama yet, still more on the near horizon, but we seriously could not be doing all of this without you. I have said it countless times, but I do not understand how people make it through life without a relationship with God and a community to link arms with in times of trouble. Thank you all!

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.

Anchored

“We are anchored in his hope.” 

This phrase gives me so much comfort and pain at the same time. I miss the person who wrote those words to me just 8 days before she died. She and I only knew each other for 2 short years, but she impacted thousands of lives in her 54 years of life. God was so sweet to me by allowing me to sit at her feet and learn what it looked like to walk through un-imaginable trials all with such grace. I am so thankful to have been witness to her story. She did life well and challenged me to do the same. I believe that the Lord orchestrates meetings. He places specific people in your path to learn something from one another. Some for just a season, others for a lifetime. I feel like the Lord is constantly revealing himself to us and if we are not paying close attention we will miss something He intends for our good. Through this whole journey over the last 6 years, I have learned to be quiet(er), to (force myself to) be still, and to ask and listen to what the Lord has for me. These are no small tasks with my God-given personality being the polar opposite of some of the disciplines that bring a person such peace. 

God has been so sweet to Adam and me through this whole story. I have told countless people that I feel like He has gently walked us into the deep end since the day Henley was born. He has gone before us, he has orchestrated every meeting with every person we have come into contact with. He has protected us from too much information and given us exactly what we needed when we needed it to move us a little further down the line. I overheard someone recently say “God never shows up early, but He always shows up on time.” Just like in John chapter 6 when Jesus’ disciples left in a boat without him and headed off across the water at night to Capernaum. Just when they got out in the middle of the water a nasty storm rolled in. The next thing they know, Jesus shows up in the middle of the storm out of nowhere, walking out to them on the water and gets in the boat with them and tells them not to be afraid. Right then they made it to the shore safe and sound. I’d say He showed up right on time.

For years we have prayed and prayed for answers for different things. Some prayers God answered quickly and some we waited on. Some things we are STILL waiting on. We trust God’s timeline and know that He will give us answers when He has equipped us with the right tools and maturity to handle them. He has never given us too much all at once (although sometimes it has felt that way), but rather He has given us just enough to process and move us a little further out into the ocean. That is how I see our lives. Either on the shore, or in the water. In the shallow end or in the deep. The ocean can be a wonderful and terrifying place. When you are on the shore, it’s pretty easy to enjoy the sound of the waves and praise God for his goodness in the beautiful scenery he created. You can even forget for a minute about all of the predators living in the water that are just searching for something to devour (1 Peter 5:8). However, it’s in the deep waters where your faith gets tested. Where you are completely out of control. When you realize just how small and vulnerable you really are and just how badly you need a savior. I am constantly in need of a savior. 

I will never pretend to have it all together and I’ll be real honest, I spend a lot of time in my closet crying out to God on my knees. It’s a place where I can go and be completely un-distracted (As long as I turn the lights off so I won’t try to organize my closet while I’m in there). I can be totally quiet and just cry out to my Father. I feel like I am daily releasing control back into the hands of the Lord and submitting to Him. I am very aware that I have ZERO control over our situation. I can do the best I can, but ultimately it’s in God’s hands. Quite honestly, I think God has been trying to get me to release control my entire life. For me, it’s taking having absolutely no control over the things I love the very most to get my full cooperation. I am having to fully rely on the Lord right now because we are out in the middle of the ocean in a boat and we feel a storm coming. We know the truth of His goodness and His love for us and are resting in his promises. We know that God has us in the palm of His hands. We know that He sees us and He has our next steps already planned out. He saw these days before we were ever born. He is not surprised by anything and in control of everything. Our job is to seek him in taking our steps and to be anchored in his hope. 

Oceans (Where Feet May Fail)

You call me out upon the waters

The great unknown where feet may fail

And there I find You in the mystery

In oceans deep

My faith will stand

And I will call upon Your name

And keep my eyes above the waves

When oceans rise, My soul will rest in Your embrace

For I am Yours and You are mine

Your grace abounds in deepest waters

Your sovereign hand, Will be my guide

Where feet may fail and fear surrounds me

You've never failed and You won't start now

So I will call upon Your name

And keep my eyes above the waves

When oceans rise

My soul will rest in Your embrace

For I am Yours and You are mine

Spirit lead me where my trust is without borders

Let me walk upon the waters

Wherever You would call me

Take me deeper than my feet could ever wander

And my faith will be made stronger

In the presence of my Savior

I will call upon Your name

Keep my eyes above the waves

My soul will rest in Your embrace

I am Yours and You are mine

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.

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.