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

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

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

Let me back up....

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

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

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

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

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

Physical therapy? Yes, twice a week. 

Speech therapy? Yes, 3 times a week. 

Any other concerns? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Leslie