Surgery is OVER in record time

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

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

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

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

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

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

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

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

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

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

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

Love you all. 

Letting Go.

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

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

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

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

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

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

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

The Ultimate Distraction

I'm not even sure how to put this little friendship into words. As her mother said "It's like this friendship was made in heaven long before they got here." I was introduced to Liz a few years ago when Darby had just been diagnosed with Chiari. One of our mutual friends messaged me and told me about Liz and asked if I would talk with her. Of course I agreed. One of my prayers has been the God please not let all that we have been through be wasted. I want the Lord to use our story to connect with others, to bring others hope, and to be there in the trenches with them when they don't even know which way is up. 

Liz called me on afternoon. We were on a road trip and I remember our conversation like it was yesterday. We instantly connected. Their family lived about 45 minutes from us. We met Liz, Ben and Darby one day at a Chick Fil A in downtown Fort Worth near the hospital. They had just met with Henley's first surgeon. We talked about all the things they could think to ask us about at that moment and we parted ways. Henley and Darby were about 3 or 4 years old at the time. 

The next time I saw them, I was sitting in the waiting room with them during Darby's surgery. 

So much time went by. We kept up, but had not seen each other in ages. One day in November I called Liz. It was a divine appointment once again, this time me being on the receiving end. God knew that I was searching. He knew that I needed to be pushed, I needed answers. I needed an expert to prove what my instincts were telling me. I begged the Lord for clear direction and He provided. Liz told me about this Doctor in New York she had been researching and hearing a lot about. They had been to see him for a second opinion the year before. Part of me felt crazy for entertaining the idea of flying to New York to see a doctor. I wrestled with this for another week and God gave me a second conformation. I knew this was my next step. The rest is history. 

These two little girls have a bond that no one else in their worlds understand. They are two peas in a pod and adore each other. What a sweet gift the Lord gave them both to have a friend who will always be able to say "I know how you feel, I have felt the exact same way." A friend who will have been there from the beginning. 

The story behind these pictures is that Darby was due for a follow up appointment with Dr. Greenfield. It just so happened (or maybe it was slightly planned this way) that Liz, Ben, Darby and Kamryn would be in NYC the exact dates we were there for Henley's surgery. Darby had a scheduled appointment for the day after Henley's surgery. 

For many reasons this was good timing on both ends. It provided Henley a much needed distraction the night before she went in for surgery and it provided Darby a "before and after" view of Henley which was encouraging for her. The night the arrived, we went to meet them at their hotel and decided that we would make sure the girls had a super fun night in Time Square, take lots of pictures and mark that night with memories for both of them. When Henley saw them she took off running towards Darby and they gave each other the sweetest hug! Darby had brought Henley a very special gift that Henley now won't sleep without. Darby calls her Jelly Cat. Henley calls hers Kitty. These are the same cat and they both have black stitches on the back of the head because they too have a scar from brain surgery. 

The Plan

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

THE DETAILS:

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

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

3. Surgery should take around 4 hours

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

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

SPECIFIC PRAYER REQUEST:

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

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

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

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

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

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

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

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

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

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

Quick Details

We have arrived in New York and are settled in our little place for this first week. We will be staying at The Helmsley Medical Tower this first week while Henley is in the ICU. This location is literally across the street from the Specialty Surgery building and so it will make it very easy to take turns getting showers and naps etc since there is little of that happening in the ICU. After Henley gets out of the ICU (approx 5 days), we will move to a cheaper hotel down the road a bit to save money and to be with those in our family who are traveling up here to be with us. If you have anything you would like to send to us over the next couple weeks, please send it to the hotel. Address is: Leslie Thomas C/O The Helmsley Medical Tower 1320 York Ave # L, New York, NY 10021 We will be in this location until Sunday March 12th. Then we will move to The Bentley Hotel 500 E 62nd St, New York, NY 10065 for the next week. Food is VERY expensive here and we are using our Amazon Prime to get some groceries and things we need delivered to our hotel (food, bottled waters and several other items we didn't even know we needed until arriving) There is also an app people use here called Seamless where you can order meals from local restaurants and they deliver directly to the lobby of the hospital or hotel. We are hoping to utilize that a bunch too. 

We have Henley's Pre-Op appointment tomorrow at 1:00pm and will have a lot more details after that appointment and I plan to write a post tomorrow explaining more in detail about the surgery itself and specific prayer requests. Surgery is Wednesday morning and since she is the youngest, that means she gets to go first. I will know a "time" tomorrow. Thank you all for praying. We know we are being carried through all of this because the Lord is answering your prayers and giving us exactly what we need in each moment. Thank you. 

Countdown to Surgery... 5 days

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

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

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

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

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

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

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

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

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

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

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

Field Trip to the hospital

Well, this was just about the best idea ever. It made a HUGE difference for Henley. We have learned that when we can put Henley in a leadership role, it helps her to overcome some of her fear. So we told Henley that since Haven & Zane had never seen an MRI machine or she was going to need to "show them the ropes" and give them a tour. Honestly, she has never "seen" an MRI machine either since she has always been asleep, but she has way more experience in hospitals than the other two and so she took on the role confidently. 

Haven and Zane were more willing to jump up on the table and try it out. Zane was especially excited about the "movie goggles" they had. We told them they could all get a turn, hoping that Henley would actually get on the table and we could get her to have a non-fearful experience with the MRI machine. She did great and we all felt much better after this was all over. 

Tips for other parents: If this is something your child ever has to do, I would HIGHLY recommend #1 doing it at a children's hospital if you can, and #2. Ask them about taking a tour beforehand. I have learned from several child life specialist that if you can help them walk through the experience with a stuffed animal or themselves it helps because they know what to expect and they can go into a procedure knowing that they will come out okay. We also use a lot of simple terms with Henley when we talk about procedures. For MRI's we tell her that it's time to take her "special pictures" of her head instead of using the word MRI since that means nothing to children. We are very honest with her when something is going to hurt or she is going to have to have blood taken. I will prep her beforehand and say. Remember we are going to see Dr. R. Remember, he is just a "talking doctor" (which means we just talk about stuff, no ouchies happen in their office).  I tell her too, "Hey, we have to go get some blood taken because the doctors need some information and your blood has the answers they need. Yes, its going to hurt, and that TOTALLY stinks big time, but afterward we can go do something fun. Would you like to stop for Ice Cream or Cupcakes?" This way she knows she can trust me and I am always going to be truthful with her. She also knows that I am her warrior mama bear and that I wouldn't let anyone do anything to her that was not for a really good reason. She knows that I am on HER side and that, she and I are working WITH the doctors to make her healthy. Lots of kids who deal with medical stuff feel left out of the decision, they often feel blindsided when adults don't tell them things because they think kids don't understand. I am here to tell you that THEY DO! Henley remembers things from when she was two years old, and how we handled things and set the stage for her then has made a difference in her perception when she is seven.

During our MRI Field trip, we made sure to praise all of the small things she freely chose to participate in. She certainly held back and was more than willing to let her siblings go first, and they obliged because they didn't have any previous fear of the situation like she does. Once the other two had gone we asked her if she wanted a turn. We asked her every step "Would you like to put the movie goggles on so you can see the movie?" She shook her head. "okay, well you have to lay down like Zane did so that they work." She laid down and we let her sit there for a minute knowing that we were all right there and that there was zero pressure for her to do any more than that. Then we said, while you are watching a movie is it okay if you ride in and out of the machine like Zane did?" She was reluctant but agreed. The operator slowly moved the bed in, waited a minute and then moved her slowly out of the machine. We asked her if she was ready to get up and she said "yes" so we took the googles off and let her hop off. With each step we call this "collecting positive experiences". We don't ever push her, but just do what she is willing to do and if she gets stuck on a step, we stop and talk through it. I will ask her "Would you like to see mommy do it first?" or "How about we let Draff (stuffed animal) try first" Generally kids don't even know what they are afraid of, they are just afraid, so we have learned that if we can take very small steps and collect positive experience along the way then she feels so much less anxious about the situation the next time. For Henley this works, I realize all kids are not like her, but we have certainly had to learn a lot about helping her to overcome fearful experiences.

Prayers Needed.

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

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

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

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

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

The cliffs notes version & the plan

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

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

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

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

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

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

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

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

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

It's Official

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

We made it to NYC!

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

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

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.

Numb

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

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

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

Henley Update Part 2

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

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

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

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

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

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

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

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

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

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

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

That brings me to today…

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

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

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

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

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

Henley Update: Part 1

Today is the day. I finally got the answer to my recent prayer. Prayers for direction, for CLEAR unmistakable direction. I’ve been praying this prayer for months. While waiting on the Lord to give me the answers I have been wearing my investigator hat. I have been waiting to post anything until I really felt like I could wrap my head around what has been going on and what we were dealing with and how we needed to move forward from here. 

I can not even count how many people have asked over the last couple of months “how is Henley doing?” If you had asked me June, I would have said “Things are great, we are in a really good spot right now and things seem to be pretty stable.” However, if you have asked me the same question since August you may have gotten a less straightforward answer. Only because I truly didn’t know what to make of the little things we were seeing at home.

Over the summer Adam and I noticed ourselves saying the phrase “What was that?”, “What did you say?” to Henley more than usual. It seemed as though something was different, but just slightly. Even Haven would be asking her to repeat things because she could not understand what her sister was saying. We tried to find a pattern. Was it when she was overly tired? Was it when her head was hurting? But really, we could not narrow it down to any specific cause. As August went on, it seemed like the speech kept getting more lazy, more slurred, more “slushy” sounding, especially when the weather changes.

Henley was also complaining about a headache EVERY. SINGLE. NIGHT. for several consecutive months. Every night we would use her essential oils, fill her diffuser and she would ask for an ice pack to sleep with on her head. Same routine. Every night. In the morning she would wake up, report no pain and run on about her day like there was not a care in the world. What do we make of this? What is causing the headaches? Is it the Chiari? Is it that she is over exerting herself and its causing fatigue headaches? Is she allergic to something in the air? Are her eyes bothering her? So many questions. 

In early August Henley also started having some slight problems eating. I say slight because they were inconsistent and some times they would be a huge deal and some times not at all. Weird things too. Like all of a sudden she stopped eating the crust on her bread. And not just like a “I am 6 and I just decided today I don’t do crust on bread anymore” but more like she would put it in her mouth, chew it and chew it and then have to go spit it out in the trash can. It was like she couldn’t figure out how to swallow it all of a sudden. We even tried other breads, like a croissant. She would chew and chew and when it came to swallowing the bite she would grimace like it was painful to swallow the bite. She even mentioned a few times “It’s hard to swallow” or “It hurts to swallow”.

Henley had her yearly MRI and check up with her Neurosurgeon at Cooks the first week of September and he stated that things looked the same from last year’s MRI and that while everything is still very compressed in her head, unless there were symptoms, we did not need to intervene, i.e. have another surgery. He chalked up the food issues to a simple childhood food aversion and we told him about the headaches to which he basically told us we could put her on a migraine medicine but that was pretty much our only option. Frustrated with those answers, but feeling like my hands were kind of tied, we went on. I mean, I am no neurosurgeon….just a mom, right? What do I know about my own child?? ugh. 

Henley started First Grade this year and has a phenomenal teacher who we adore. I know that she was hand picked for Henley and it’s a perfect match for her. This teacher is unique and perfect for Henley because her own 28 year old daughter has had her own extensive medical journey similar to Henley’s, and so this momma, not only has many years of teaching experience under her belt, but she has also been in my exact same shoes with her own baby and understands it all in a way that so many others just can’t. I say all of that to say that the Thursday before we left for MIT in Boston, I got an email from her expressing concern about Henley. She mentioned that since the beginning of school she had noticed regression in her reading and speech and just connecting in general. My initial thought was that we were only about a month into school and that maybe Henley just was not as comfortable with her new teacher yet and was needing more time to adjust. I asked if I could have her Kindergarten teacher pull her to asses her as well and give me her opinions too. She did and came back with the same concerns. She stated that not only did she see the same problems her new teacher observed, but that she felt like Henley wasn’t quite “all there”. In addition to that she mentioned that while walking her back to class she witnessed Henley trip 4 times in the hallway. When I asked her to explain, she said “It’s not like she is tripping over her shoes, It’s like her brain isn’t telling her feet to move fast enough”.

We went to MIT in Boston to participate in a research study being done by Simons VIP Connect that is studying Henley’s rare genetic deletion 16p11.2. This specific study was going to just so happen to be looking at how the brain processed speech with a fMRI (Functional MRI). This study is done in an MRI machine while the person is awake and they ask the person to partake in activities while watching what happens in their brain when they do. THIS did not go well. Long story short, it was traumatic. I saw a side of Henley that I have never seen before. I saw her in a full out panic attack and it was….hard. I cried, she cried. It was not happening. We were able to complete some other parts of testing they were needing, they assured me that it wasn't a totally wasted trip, but it sure felt like it to me.

Yearly Update - May 2016

So I guess this blog has dwindled down to only a yearly update of our lives. A Christmas card letter of sorts. I am fairly certain no one even reads this blog anymore since I rarely write anything, but today I felt like I needed the writing therapy, so here I am. Consider yourself warned.

I just finished standing in the kitchen with Adam, re-capping my day. Many tears were cried and I am so frustrated with myself and my lack of being able to pull myself together. I don't even know where to start here except to say that I am pretty sure I have PTSD and I am beginning to learn about what it feels like to have that PTSD triggered by events that may or may not have anything to do with you.

That feeling you feel when stand witness to a situation that is not involving you and its not about you, yet you all of a sudden feel like you can't control yourself and your emotions. You feel like you want to run or do something to help but all you can seem to do is start crying uncontrollably. You feel like an idiot because this is not about you, you are not the one in the situation, you are just a witness, yet you feel like you are in the middle of absolute chaos and you are frozen and scared. This is how I feel when I witness someone having a medical emergency that involves 911 being called.

I few months ago, God placed me in a situation at our preschool where I "just happened" to be in a parking lot as another mothers entire life came to a screeching halt when her 2 year old daughter began having a seizure in her car. I somehow ended up standing at the passenger door talking her through what was hands down the scariest moment of her life up to this point while we waited for the paramedics to arrive. Her daughter, strangely enough looked a lot like Henley did at 2 years old. Long beautiful blond hair, tiny petite body and just.... lifeless in that moment. It was almost more than I could handle being right there and watching it all unfold again in front of my eyes. I prayed over her and told her it was going to be okay and tried to help her make some rational decisions about her 11 month old who was also in the car at the time. I may have held it together in that moment, but the minute I got in my car, I could not stop crying. For HOURS. It was like I just could not control myself and the tears just would not stop. I knew that that mother would never be the same.

It happened again today. I was in a crowd of people. About 10,000 women actually at Pink Impact. My heart and mind were already raw from the messages that we had heard and then right on the floor in front of the section I was sitting in, an elderly woman began to have seizure or something similar. They quickly stopped the conference, people were yelling for someone to call 911 people were running around. Everyone started praying over the woman, Medical personnel were rushing around and it was a scene that was all too familiar for me. I just started crying. I immediately was taken back to the Cook's emergency room in October 2011 with Henley. I was right there all over again take Henley out of my arms, push me out of the way and then be pushed out the door to look on over the doctors surrounding my precious baby while I could do nothing but cry and collapse on the floor begging God for help. The were running in from different areas, putting oxygen on, putting IVs in, pushing drugs and trying to stabilize her body and document the events. I remember crying so much that day and then becoming numb to it all. I remember feeling like I was having an out of body experience in that moment. I remember the purple frog pajamas she was wearing and how she sounded every time she was about to have another seizure. I remember being afraid to be alone with her but not wanting to be anywhere else. I remember just walking through the halls of the hospital for days not even being able to think...just numb to it all. I have never been the same.

I told Adam that I get so mad at myself because I can't just pull it together. Why on earth do I still have a response like that 4 years later? I hate crying. I hate drawing attention to myself and I hate it when people ask me what is wrong. I hate feeling like I am not in control...especially of my emotions. I feel like people probably look at me and think "Geez, I mean, shouldn't you be fine by now. Henley is doing well, she hasn't had an episode in over a year. Trust me, I am thinking the same thing! I told Adam that I wonder if I will ever be okay or do you ever heal from such a thing? I don't know the answer. All I know for sure is that I must not be healed yet.

Swallow Study- Check!

Feeling much better after the appointment today. I have to back up and talk about Friday's appointment with the ENT. Because Henley has begun to lose weight, the neurosurgeon wanted to start ruling some things out that could be potential problems causing the weight loss. For most children losing a pound of two at age 5 (almost 6) might not be a big concern, but Henley is still just 34 lbs, so it remains a concern for her. So this is the reason for the influx of new appointments since her MRI in early Sept.  

Friday we saw the ENT because they wanted to look and make sure that her tonsils were not enlarged and causing her to have problems swallowing food. Obviously, if you are having trouble swallowing food, it would make sense that you would not want to eat as much and therefore lose weight because of it. Tonsils can be removed pretty easily if that is the source of our problem so we went to see what the ENT said. Her response was that Henley's tonsils looked perfectly normal and she did not believe that was any part of her problem. Good news there, we can cross possible tonsillectomy off the list.  

Today the therapist watched Henley eat a few different things and watched her struggle to eat chicken (which is what we see at the dinner table) She grimiched when she swallowed and so for parents we assume that means it's because it's hard for her to swallow. The reason for the swallow study is to figure out WHY is it hard to swallow? The result: she is simply trying to swallow her food without chewing completely. Most likely because of her muscle tone issues and not having a super strong jaw. So I jokingly said I guess we need chewing therapy next. At least we know now that everything is going in the right direction and not attempting to travel down her windpipe. Thanking the Lord for there not being swallowing issues. We can work with chewing issues!

Wednesday night is her sleep study. This will be the final test for a while for Henley, so we are praying that everything is normal and there is no central sleep apnea. This would certainly help me sleep better at night if we could rule this out too. 
 

Here is a photo from Henley's sleep study

Steady my heart....

It's Monday. This is going to be a big week. Today is Henley's swallow study. In just under an hour we will begin this procedure. I am sitting in my chair at home trying to be proactive about a panic attack I feel coming on. In the midst of trying to get my breathing under control and stop the urge I feel to throw up. I hear Henley upstairs singing at the top of her lungs, a song that she has no idea has carried me through so many things. She is singing every word as clear as can be. I can hear each word as if it were from The Lord reminding me  in this moment of his constant love for me. 

"Steady My Heart"
 

Wish it could be easy
Why is life so messy?
Why is pain a part of us?
There are days I feel like
Nothing ever goes right
Sometimes it just hurts so much

But You're here
You're real
I know I can trust You

Even when it hurts
Even when it's hard
Even when it all just falls apart
I will run to You
'Cause I know that You are
Lover of my soul
Healer of my scars
You steady my heart

I'm not gonna worry
I know that You've got me
Right inside the palm of your hand
Each and every moment
What's good and what gets broken
Happens just the way You plan

Please say a prayer for us this week as we have this study today and then Henley's sleep study on Wednesday night. Adam is out of town this week in between these appointments and so in addition to this week being a lot to process through in my head, I have our three precious babies by myself for a couple days. Nothing I can't handle, it's just lots to manage this week. Please pray for clear cut answers and no grey areas. Either, there is a problem, or we rule it out completely. Thanks y'all. 

 

10th MRI Results

So, I was wrong. I thought it was her 9th MRI but Dr. Roberts corrected us. It was actually her 10th round of MRI's although even that number counts for somewhere around 25 actual scans of different parts of her body since she is generally having 3 scans per MRI session (brain, c-spine and lumbar spine) This is not counting the XRays and Ultrasounds that have also been done in her lifetime.  

Our day was long yesterday. However, we left the appointment with an updated plan of action. Looking at the images with Dr. Roberts we were told there were two positive changes! Years ago Henley was diagnosed with scoliosis and we were told this was common with Chiari patients. We have sense found it is also common in children with her genetic disorder as well. I started doing some research about scoliosis and decided that it couldn't hurt to try some holistic approaches with Henley to see if anything we did made a difference. After all, there was really nothing to lose. I found and took a course in a technique using essential oils that was believed by many to help aid in restoring the spinal column to its intended state. I wanted to have some kind of training on this so that I could administer this specific technique to Henley myself, rather than paying someone else to do it. I have done this treatment on her several times over the last year and have also used some specific oils on her spine nightly. While Dr. Roberts was going over her images he noted that one positive change was that her that her scoliosis had appeared to have corrected itself and her spine was now straight as a board! Adam and I just looked at each other yesterday and said "Wow, that is REALLY interesting information" all the while jumping for joy on the inside! I spent some time this morning just pouring over years of MRI images to note similarities and differences after yesterday's appointment. Images don't lie and now I have even more "proof in the pudding" that what we have been doing for Henley is making some positive changes. Praise the Lord!  

Another area that showed improvement was also in her spinal column. This make take some explaining so here goes: There was a small cavity in her spinal column that was considered to be a "pre-syrinx". Basically, this means that there was a pocket in her spinal column that was developing and could potentially fill with spinal fluid. This would happen if the spinal fluid around her brain became so restricted that it had to choose the path of least resistance and started collecting in the spinal column. Most Chiari patients have surgery simply because they have a syrinx. Even if they don't have any symptoms, the syrinx is a big enough deal to merit a surgery. This is due to the fact that a syrinx can cause all kinds of major problems. This is obviously something we don't want....EVER. Henley has never had a syrinx, but had surgery because of symptoms and complications from the pressure being put on her brainstem because of the Chiari. However, we considered her one of the lucky ones NOT to have a syrinx to go along with the other stuff. Anyway, the pocket that was forming has actually decreased in size which means the potential for a syrinx to occur is actually diminishing. YAY! This is obviously very exciting too.  

So then there is the other stuff. We talked again about the pain that Henley has been in and the fact that she is complaining of pain in her back when she breathes and of constant headaches and the overheating. The exhaustion she has daily after very small stints of activity etc. We talked about the fact that she has lost weight and is avoiding key foods that would lead her surgeon to believe that there more of a problem than we might be seeing. Swallowing, gaging and choking were some of the reasons she had surgery in the first place. These are signs that there is pressure on her brainstem when she tries to swallow. In order to figure this out for certain we were advised that its a good idea to have another swallow study done like we did before. This will allow us to observe exactly what is happening when she is eating and swallowing food. This will be done under XRay and filmed so that the doctors can see the details of what is going on so that we can make a more informed decision.  

Another item that was talked about was the potential for her to be having sleep apnea. This is also common in Chiari patients as well as children with 16p11.2 genetic syndrome. We have several family members that also have sleep apnea and have to use CPAP machines while they sleep to ensure they are breathing. There is however a difference in regular sleep apnea and what is called "central sleep apnea". You can read about the difference if you like. However, I will sum it up for those who just want to cut to the chase here. Central sleep apnea can have detrimental cardiovascular and neurocognitive outcomes in children. All that said, we will be doing a sleep study for Henley to see if this is something she has. If she does have central sleep apnea, It would require another surgery. This is something I have had in the back of my mind off an on over the years. There have been times I wake up in the middle of the night and run up to her room just to make sure she is still breathing. I even bought a pulse oximeter to be able to see how much oxygen she is getting at any given time. There have been some nights the number have been in the high mid 80's. (They are generally concerned if children's numbers are below 94-96% however, the number can be a bit lower while sleeping from what I understand)

Either way, its on our radar now and we are going to be looking into this as well as the swallowing issues to see what our next step is going to be. Please keep praying that all of our tests will be clear and we are given peace about whatever steps we need to take next. We are so thankful for all of you who are still keeping up with our little girl and who are still praying over her. We covet your prayers and are so humbled to know we have an army of prayer warriors we can call into battle with us at any given time. Thank you. 

While your at it, you can pray for my grandmother who fell and broke her hip yesterday and had emergency surgery and then for Adam who got 2nd degree burns to his hand last night in a "grilling mishap" and ended up in the ER. It was quite an eventful day yesterday. Y'all, we just can't even make this stuff up.