Surgery is a Go.

Today we had Henley's pre-op appointment.  Since our last pre-op 4 weeks ago, in which we were told that surgery had to be canceled because of her croup diagnosis, we have made every effort to keep her as quarantined as possible by pulling her out of school, not putting her in childcare at church, & keeping her locked inside of our house whenever possible.  So, needless to say, we were a little anxious about this appointment.  Honestly, the last 4 weeks have been some of the most trying in this journey just because of the waiting.

We got Henley all checked in and up to the surgery prep area around 9:30. They took her vitals and then we began to get peppered with questions regarding Henley's health, first from Dr. Roberts' nurse and then from the anesthesia nurse practitioner.  Then a few more nurses came in to take blood from her.  They hadn't even got set up to do their thing when the anesthesiologist came in to check Henley out.  At this point, both Leslie and I looked around and there are at least 10 medical personnel in our room tending to one thing or another.  The anesthesiologist had a thick foreign accent and spoke very softly, and when combined with the nurses playing with Henley on an iPhone it was very difficult to understand what all he was saying.  First, he asked lots of health questions, specifically regarding her respiratory health.  Once he was satisfied with our answers, he listened to her lungs and said she sounded great.  Then he began to go over with us all of the possible scenarios for tomorrow.  He explained that she will have 2-3 veinous IV's along with an arterial IV, which will constantly monitor her blood pressure with every heartbeat throughout the procedure and possibly a little while after.  Henley has been put under several times for MRI's so, to us, anesthesia has not been that big of a deal, but after hearing this, it hit me that this is going to be much more involved this time around.  

Once the anesthesiologist left the room, we knew that the surgery was a 'go'. Since the anesthesiologist is the one who can pull the plug on the surgery, he was the one we really needed the approval from.  The nurses took Henley's blood, then we spoke with Dr. Roberts' nurse practitioner.  We answered some more questions for her and then we asked her about how long we could expect to be in the hospital.  She said in Henley's case, we should expect to be there at least until Thursday and possibly until Sunday depending on what has to be done and how she responds.  Also, we found out that we don't have to be at the hospital in the morning until 6:30, which gives us an extra hour of sleep (Lord knows we'll need it).

So that's it.  We are go for surgery in the morning.  Leslie and I have just been blown away by the outpouring of prayers & encouragement all day today.  It has truly been humbling to see the body of Christ in full force on our behalf.  Everyone tells us how faithful we have been in this journey, but it has truly been a result of the support we are getting from our family, friends, and especially our church family.  Our small group, ministers, & elders have gone above and beyond to fulfill our spiritual, emotional, & physical needs during this time.  They are the example of how a church should respond to those that are in need, and we feel honored to call them our brothers and sisters in Christ. 

This Week in a nutshell

So here is my "quick" update because I know most of my post are a tad bit long winded (sorry) 

Saturday Henley spiked a random fever of 101.4 around 4:00pm. Since this isn't our first rodeo I went ahead and started running through my "Emergency Plan". I know 101.4 fever is not a lot for most kids but Henley is the kid who never runs a fever....for anything. So a fever for her just about merits an emergency plan. 

Adam and I made a plan to take Henley to an ER that was not associated with Cooks for the reason of not having her chart red flagged with an ER visit a week before her scheduled surgery. We just needed to have piece of mind that it wasn't something major that needed attention and if an antibiotic was needed, we wouldn't have to wait it out for another day to see her pediatrician. She was not diagnosed with anything in particular but given her situation, the doctor went ahead and gave her amoxicillin to just cover her until the surgery. 

Sunday Henley seemed about the same. She was not really eating or drinking and only had a couple of wet diapers. We had our babysitter come to be with the kids so that we could go to our small group (since we can't have them in group childcare settings right now) About 30 minutes into our small group I got a phone call saying that Henley had just thrown up all over the living room. Awesome. By the time we got home she had already been bathed and was asleep in her bed. 

Monday Henley was not herself. Still not really eating, lethargic, not happy. She was complaining a lot about "ouches". This has been a recent but constant occurrence over the last 3 weeks. She seems to constantly be saying "Mommy, ouchie!" "Mommy, it hurts" while pointing to different parts of her body. (back of hands, knees, lower back, head, feet. etc) I even noticed her holding her head a lot. Around 2:00 we had her dietitian come as well as her caseworker for ECI. They needed to weigh and measure her and it was all I could do to get her to cooperate. She is usually so good about this but she was in rare form. She just cried and cried until I took her up to her room which was dark and cold. When we walked in the room she stopped crying and was so happy to be put in her bed. Monday night she threw up all over the playroom floor and continued to be miserable. 

Tuesday was worse than Monday. She threw up two or three times that day. I felt like all I did was clean up vomit off the carpet and listen to her tell me about her ouchies. 

Wednesday we had Henley's favorite little friend Emerson come over to play. I thought that would maybe make her feel better. However, the entire time she was there Henley laid on the floor in the playroom and just watched her play. I tried to feed her lunch and she wanted nothing to do with it. She wanted to lay under the kitchen table instead. After I ate, she wanted to just hold me and lay on my chest. She looked miserable all day. We had an entire playdate happening with lots of giggling, squealing etc and Henley just wanted to be alone in her room. I put her down for a nap around 12 and she stayed there for an hour. When she got up, she went back to the playroom to be with everyone and just laid on the floor again. After our friends left Henley had the worst accident of all. I won't even go into it, but just trust me when I say it sent me over the edge in disgust. 

Thursday morning Henley woke up, came downstairs and said "Mommy, medicine?" My heart just sank. I cannot even express how much it hurts my heart to know my sweet baby is in physical pain and there is not a thing I can do to fix the real problem. Before, she was not showing signs of being in tons of pain. It seems we are to that point now and its really hard to watch this unfold in my baby. 

It was at this moment that a lightbulb went off for me. So many times I have heard or read about people in the bible who were so desperate to be free from pain and from their ailments that they were willing to do anything to just be in the presence of Jesus in hopes of him noticing them in the crowd and having mercy on them. I understand that now. I think so many times before I have prayed for others healing flippantly and just let the words "Father, please heal ____" roll off my tongue. Now I think I really get it. Now I am praying differently. "Father, PLEASE have mercy on this child. Please heal her, please fix what is wrong and make her strong and full of life." I have no idea if Henley will ever be able to have a fully "normal" life without pain, but rest assured it will be my daily prayer for her.

For Adam and I, we have both have felt continued confirmation this week that the surgery is necessary. I am thankful to have peace in my heart about the surgery. We just pray that God ultimately heals her is whatever way He chooses, so that she can live a life free from all the pain associated with the Chiari. Migraines included!

Prayer Warriors!

Dearest Prayer Warriors, 

Hi, I am Allison Mullins, a guest writer today for Adam and Leslie.  What a special family they are to my husband Matt and I (and my kids too).  We have been friends for many, many years.  We love the 5 of them so much. 

It is my honor and privilege to come to you dear readers today to ask for your prayers for sweet Henley as she will be having brain surgery on Tuesday.  

I don't know about y'all, but I have been blown away with how boldly Adam and Leslie share their faith through this CaringBridge site as well as their blog.  There is no doubt that God is using them to reach many people, myself being one of them. 

A few weeks ago Leslie and I were talking on the phone, and I was telling her how amazing I think she and Adam are for how they are letting God use them during this difficult journey with Henley.  How I believe that their testimony is touching so many people.  It was then that Leslie commented on how she wished she knew who was reading and praying for Henley....I then said, "well let me ask." 

So here we are just days from Henley's surgery, and I ask you today to let them know who you are.  I can't imagine how much it will mean to them to read through your comments.  I pray that over the course of the next few days that they are SHOWERED with love and encouragement from all of their readers.  That your prayers, comments, encouragement, and love sustains them.  If you have never met them personally, still comment.  How amazing it will be to know that their precious daughter is being prayed for by people they have never even met.  Isn't the Body of Christ beautiful?!  It gives me chills.  Feel free to pass this site on to as many of your prayer warrior friends that you know.  Let's lift this family up! 

Once this surgery is behind them and Henley is on the road to recovery, Leslie is going to turn this CaringBridge/Blog into a book for Henley.  Her hope is that someday Henley can read about what she went through as a little 2 year old girl, and read the comments of all those who love and prayed her through.  What a treasure that will be to Henley one day.  I can imagine her sharing that book with so many as this is a part of her story, her testimony.  There is no doubt that God has big plans for Ms Henley Kate Thomas....I personally cannot wait to watch her grow and see her story unfold. 

Thank you so much to all of you who read this.  Thank you for how you love and pray for this precious family.  Thank you for being a light to the Thomas family. 

 The verse I am claiming over them in prayer for the Thomas family comes from Philippians 4:6-7:  

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Philippians 4:6-7

May the PEACE of GOD, which transcends ALL understanding, GUARD Adam, Leslie, Haven, Henley, and Zane's hearts and minds in Christ Jesus.... 

May God bless you all! 
Love, Allison

-----I went ahead and copied & pasted below the specific prayer requests that Adam wrote a few weeks back.  Print these out and hold them close to your hearts over the next few days.  I believe God is at work here---God is doing a mighty work through The Thomas Family.  
 

SPECIFIC PRAYER REQUESTS 
-Pray that God completely heals her to the point that surgery will not even
be necessary.  There will be an MRI done before they begin, so they
will be able to tell if something has changed before they make an incision. 
-Pray for our neurosurgeon Dr. Richard Roberts and his team that will be assisting in the surgery. 
-Pray for our neurologist Dr. Brian Aalbers & all of the nurses that will be caring for her. 
-Pray for surgical "Plan A", which will be explained in the next post. 
-Pray for no complications, minimal blood loss, and no infections. 
-Pray for a quick recovery and minimal hospital stay. 
-Pray that Henley will be comfortable with someone other than Leslie. 
-Pray for protection around Henley in the months to follow the surgery. 
-Pray for the surgery to be effective in eliminating all of her issues
(gagging, choking, vomiting, speech, weight gain, reflexes, balance
& coordination), and for no more surgeries to be necessary. 
-Pray for the people who will be caring for Haven & Zane while we are in the hospital. 
-Pray for Leslie and I to have strength, peace, good health, & a moment or two to break away and relax. 
-Pray that Haven & Zane are minimally affected by all the chaos around them. 

The Surgery

This is probably the number one question I get when talking to people.

"So, what are they going to actually do during the surgery?"

One of the things that is so amazing about Cook Children's Hospital outside of the amazing staff & facilities is the medical equipment. I know that seems like I strange thing to mention because you would think that all the children's hospitals have the same stuff. However, they don't. Apparently a pretty awesome donor or group of donors made it possible for Cook Children's to have what is called an IMRI Machine (this video shows how the machine actually works. Its really cool!). This Intraoperative MRI Machine cost about 10 million dollars to acquire and there are only 200 of these in the entire world. I will explain more about that in a minute.

On Monday January 30th we are scheduled to go in for Henley's pre-op visit. At this time we will meet with Grace who is Dr. Roberts assisting physician and will be in the OR with Dr. Roberts during the surgery. She will go over everything with us and we will then meet with the anesthesiologist. The anesthesiologist will look Henley over with a fine toothed comb and make sure she is able to handle the surgery. If they can not find any reason to postpone the surgery, then they will take pre-operative blood work and give her a super powerful dose of an antibiotic. The reason for the antibiotic is to make sure it is already in her system before they start. Infection from a surgery like this is a major concern so throughout Monday and Tuesday she will get a total of three doses of this medicine to help her body fight off any potential infection. 

Tuesday morning we are scheduled to arrive at the hospital at 5:30 in the morning. The surgery is scheduled to start at 7:00 am. Henley will be given a "cocktail" which is basically a medicine that they give about 30 minutes before they are going to take them away from mom & dad. This medicine is designed to ease the separation anxiety and it also has an amnesia affect on the child to help them not remember any of that time before surgery. In the three times that Henley has been under anesthesia, I have only seen that medicine do its job once. So lets all say a little prayer that she has no problems leaving our side. Once they are back in the IMRI Suite they will give her a mask and put her to sleep. Given the fact that she has done her fair share of breathing treatments, this should not be a problem at all.

Once Henley is asleep they will get her set up for the surgery with the halo around her head and set just like they need her to be. Here is where the cool part comes in. I mentioned that she will be in what is called an IMRI Suite. What this is is a huge, completely sterile operating room that is basically two rooms in one separated by a garage door. Once they have Henley set up they will open this garage door and out on a giant track in the ceiling will come this huge MRI machine. It will come directly over Henley and while she is asleep it will take an MRI of her brian as it sits right then and there. So before they make a single cut, they will know exactly what they are looking at. (We would appreciate specific prayers for this MRI to show that everything is normal and surgery is not even necessary).  After the MRI they will take the machine back out and the garage door will close. At this point they will make the incision which will be about 4-5 inches long and stretch from the nape of her neck up the center of the back of her skull. Because of the length of her hair and being able to pull it into pig tails they are not going to have to shave her head! I know its a silly thing to be concerned about, but I am thankful that her head won't have to be shaved.

Once they have made the incision they will remove part of her occipital bone around her foramen magnum. The part they will remove cannot be felt by touching the back part of the head.  They will also remove the back part of her 1st cervical vertebra.  The sides of the vertebra are responsible for stability, so removing the back part should not cause any structural issues.  Both of these techniques are designed to help create more space in the back of her skull and relieve the pressure that is being put on her brain. After they have done this they will begin the long and delicate process of thinning out the dura mater. The dura mater is the covering around your brain. It is very important because this is what keeps all of the cerebrospinal fluid intact. The reason they will be thinning out the dura is to hopefully provide a little bit more room for the brain. Henley's brain is so crowded at the base of her skull that they are needing to make room for it so that it won't be pressing up against her brainstem. After they have finished the process of thinning out the dura they will bring the MR machine back into the operating room and take another MR scan of her brain to see if they have done enough. If they feel like they have, they will begin closing her up at that point. This would conclude "Plan A" of the surgery. If they find that the fluid is still not able to flow as freely as they would like then they will make the decision to move forward with "Plan B" which will be much more invasive.

"Plan B" would include actually having to cut the dura of her brain and sew in a graft, which acts as a patch.  This will allow the dura to expand even further and create more space.  The reason they try to avoid this option is because it significantly increases the risk of complications.  For one, she will have to be admitted to the ICU for the first 24 hours post-op.  Also, recovery will be more difficult and she will have to spend an extra couple of days at the hospital.  Complications could include increased pain, nausea, and leakage of cerebrospinal fluid.  So, needless to say, we do not want anything to do with "Plan B".

As far as recovery goes, we've been told to plan on being in the hospital between 5-7 days.  However, depending on how the surgery goes, this will determine how long the stay is and how difficult her recovery will be. For the month after the surgery she will have to be closely monitored and she will have a "two feet on the ground at all times" policy when she is awake. No climbing, jumping, swinging, sliding, stairs by herself, etc. As most of you who have two year olds know, this will most likely be the most difficult thing for us to manage. Henley is without a doubt out our most adventurous child and our natural thrill seeker. She will also not be able to have her head submerged in water for at least a month. I believe we will be able to wash her hair, but keeping her from "swimming" in the bathtub is also going to be a challenge.

As soon as we are home and settled back in from the surgery ECI (Early Childhood Intervention) will start coming to our house for all of Henley's different therapies. As of right now she is scheduled to have 5 different therapist coming to the house. They will have a nurse coming to check in on her, a physical therapist, and a occupational therapist that will be working with her cognitive skills, fine and gross motor skills etc. There will be a speech therapist and a counselor with IMH (Infant Mental Health) coming to make sure that she is coping well. In addition to that we will start back up with her feeding therapy that we will have to travel out of the house for. Needless to say its a lot to wrap our brains around, but as always we are just taking it one step at a time.

Q & A's

Leslie and I seem to be getting the same few questions while we are in standby mode waiting for the surgery.  We felt now would be a good time to address them.

How's Henley Doing?
She's actually doing pretty well health wise.  She seems to have gotten over her bout with croup and has shown no signs of a snotty nose or cough.  It is most likely because we made the decision to pull her out of her school during the week and not put her in child care at church, for that matter Leslie has refrained from taking Henley just about anywhere.  We just bought a new juicer too.  We made the first batch this evening out of organic carrots, apples, & beets and she loved it.  We will definitely be pumping a lot of raw vegetables and fruit juices through her over the next 2 weeks in an effort to keep her healthy.

She is still walking funny, and some days are worse than others.  When I say she walks funny, I mean that it looks like her right leg is delayed just enough so that it looks like she is either limping or skipping.  Some days, her foot will drag behind her and on these days we see a lot of falling.  She almost always wants either Leslie or myself to walk down the stairs with her while holding her hand.  She also seems to be having more headaches because we notice her holding her head a lot more, however we could be dealing with these even after she fully recovers from the surgery.  Frequent headaches are just something people with Chiari have to deal with.

Here is a picture that Leslie took today of Henley's shoes. This is just one example of how bad she is dragging her right foot.

 

What are you hoping the surgery will actually accomplish?

We are hoping the surgery will relieve the pressure that is being put on her brainstem.  This pressure is most likely the cause of her chewing, swallowing, reflux, vomiting issues and her problems gaining weight.  We are pretty confident that the surgery will resolves these issues.  Her walking issues we are not so sure about, but we hope and pray that these will be resolved as well.  The hardest part about deciding to do the surgery is that there is no guarantee that it will work, which is why we tried to exhaust every other option before going ahead with it.

What will happen in the surgery?

That one question will require an entire blog post so stay tuned.

How are you guys doing?  Really?
Things are okay.  We definitely have our ups and downs.  Our bodies seem to be taking the brunt of all this.  We seem to be spending a lot of time working on each other's shoulders and back.  Both of us are tired a lot, but that could just be from having 3 kids 4 & under, one of which is currently cutting teeth (Geez, what were we thinking?).  It really feels as though we are about to have another child, especially as the surgery date gets closer.  We definitely want our house to be as clean and organized as possible and for all loose ends to be tied before the 31st.

Yesterday Leslie came home after being out with Haven and was telling me about how she felt as if some people would look at her and wonder when she was going to fall apart. Recently we have found that a lot of people have heard about what is going on in our lives through this site and Leslie's blog. It is truly a blessing to have a community of people praying for you and encouraging you. However, sometimes it feels like everyone is walking on egg shells around you and waiting for the other shoe to drop. Possibly it is the awkwardness of wishing they had something perfect to say that would somehow make it all better. We understand that most people don't know how to respond to us and we are okay with that. I suppose Leslie and I seem to have a different perspective on this situation as a whole.

We feel as though God has shown Himself throughout this whole process and seems to be saying to us, "This is not about you, it's about Me." Although this journey has had it fair share of moments where we felt like we might be drowning, God has always seemed to remind us that He has got this and we need not worry about what is next. We are confident that He is preparing us for everything, just in time for us to take the next step. Leslie and I both recently listened to a Matt Chandler sermon where he seemed to sum up so many of our thoughts along the way. One of the key statements he made was this:

"All conflict is predicated and built on the idea that the world is about you. The more the world is about you, the more angry and tired you will be. The more it is not all about you, the more free you will be."

We've realized in this that God can use our struggles for His glory so much more than he can use our blessings.  So, yes, there are days that are rough and happiness is hard to come by, but we are full of joy knowing that God is being glorified in the midst of our trial, which is what the world is really about.

Just a little praise

Just wanted to throw out this little "Praise God" for the day. I got a phone call earlier from Henley's geneticist office letting us that they got the results back on mine and Adam's genetic testing. I am pleased and relieved to announce that there were no abnormal findings on either of us. What this means is that Henley's genetic issue was a random occurrence in her and unlikely to have happened in either Haven or Zane. Better be since that deletion is said to only affects 3 in 10,000 people in the general population. Man, I do not want to win that lottery twice!geneticist office letting us that they got the results back on mine and Adam's genetic testing. I am pleased and relieved to announce that there were no abnormal findings on either of us. What this means is that Henley's genetic issue was a random occurrence in her and unlikely to have happened in either Haven or Zane. Better be since that deletion is said to only affects 3 in 10,000 people in the general population. Man, I do not want to win that lottery twice!

Either way this deletion in Henley's DNA will most likely require that when she wants to have children that she get pregnant by in vitro in order to ensure that she does not pass this deletion along to her children. The reason that is important is because it generally affects future generations in a greater capacity than the person it originated in. 

So even though most of the issues we are dealing with are related to the Chiari (Key-ari) she has, she will still have a future of medical issues to address when the time comes. At least today we will praise the Lord for this genetic issue most likely stopping with Henley's generation and not being something our other children or potential grandchildren would deal with. Thank you Father for this blessing.

Roles

So much to write about, where do I start?

First of all I want to thank all of you who have sent text messages, emails, and made phone calls just to check in on us. We really appreciate it more than you know. It is one of the most humbling things to get daily encouragement from friends who we haven't heard from in ages and even total strangers. I apologize if it takes me a while to return calls or messages. Most times I am checking those on my phone and I sometimes feel like I can not adequately respond on my tiny little phone keyboard. So I promise that I am reading the messages but sometimes just can't remember to respond hours later when I have the chance. The waiting game is hard, but we have been blessed with a relatively calm week. It appears that most of us are on the mend from all of our recent illnesses....except Adam who started running a fever tonight. Boo.

I feel like God is really blessing Adam and I with some amazing lessons on how to love those who are suffering. I feel like we are getting a rare glimpse at several stages of hardship all in this one journey. My best friend actually drew my attention to this little lesson the other day. She is so good at seeing the beauty and mercy in situations and I am so thankful to have a friend who is able to help me process things in that way. She mentioned that we are getting to know what its like to take on several different roles and can now identify with people we may not have been to before. For instance:

The Grieving Parent- Struggling daily with the frustration and sadness that something is wrong with your baby that you do not have the capability to fix on your own. Even knowing that God is in control and can take it all away with a single word. It is still hard not to watch your child going through it all and have those moments of sadness about the situation.

The Caregiver- having to take care of things with not only Henley, but all of our children and ourselves. Children are hard enough without problems, but when they have issues that are constantly needing attention and visits to doctors, specialist and therapy providers it just adds to the daunting task. Not only that but the fact that we can't explain it all to Henley is sometimes hard. I wonder sometimes if she thinks "Why are my parents letting the doctors/nurses do this to me?" (most of the reason I am writing this blog...to explain to her later in life why we made the decisions we made and how God guided us through)


The Depressed- I'm not gonna lie, this has been tough. Thankfully, I had an awesome OB/GYN who has known about everything with Henley since we found out (because I was pregnant with Zane at the time too) and I feel like they know about the stresses & struggles along the way. All it took was a phone call to let them know that Henley was having surgery and they prescribed me some anti-anxiety meds to take the edge off until things settled down. I was really worried that medicine would change me, but I have been plesantly surprised that I feel completely myself, just without all of the crazy panic attacks.


The Weary- This is a big one for both Adam and I. We are tired. We are both hoping for this to all be over and be able to take some time for ourselves. Maybe even go somewhere to get away if we can. We just need a physical break from the day in and day out of it all. One day a while back Adam and I found ourselves sitting on the floor during the kids nap time and took turns rubbing each other shoulders because we were both a total physical mess. I have told Adam that I think that my body is taking the brunt of this even over my emotions. Its weird too, how your body responds in a stressful time. I wonder if I will ever get back to a time in which I feel relaxed for a long period of time don't grit my teeth constantly.


The Anxious- I know. "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:6-7  I recite this verse to myself a lot! Even today I prayed for our needs to be met that we don't even know that we have. I also told a friend of mine that I felt like I had the physical exhaustion of a pregnant woman in the first trimester, but the nesting feeling that comes along with the last few weeks of pregnancy. One thing I have been doing is cooking and freezing meals. I am not sure what has gotten into me lately. In fact I did this back in October when one of my other close friends mother died. In the weeks before she passed away I started baking...a lot. It was almost as if this was my preferred outlet for grief. I am quite certain that we all gained a few extra pounds in October with all of the "stress baking" that happened at our house. Hey, we like to eat what can I say?

Anyways, all that to say I feel like there are several different roles that people get put in over the course of their lives that we are experiencing first hand over a short period of time. It has given me a new respect and appreciation for people I never really thought about before. No matter what you are dealing with It's all hard! I feel like I have learned to be more caring and attentive to people. I have also become increasingly more aware that every single person will deal with something at some time in their lives in which they will be forced to surrender and rely on others to carry them for a time. I think this is a blessing for both sides who willingly let people participate in their lives. We have been so blessed by the encouragement God has given us through His people and I know this has changed us both forever.

New Surgery Date

I just spoke with the surgery scheduler for Dr. Roberts. We talked about the fact that Henley had been diagnosed with croup this weekend and that Dr. Roberts said that we needed to wait about 6 weeks for surgery. She said that usually they reschedule for 4-6 weeks so we picked a date somewhere in the middle of that. 

I hope THIS date is that God has in mind because I am apparently not great at guessing the right date for things.

January 31, 2012

After re-scheduling I decided it would be best for me to keep Henley out of school and away from other people as much as possible between now and the surgery. So please forgive me if I seem to be a bit MIA for the next month. I will probably be pulling my hair out here at home. 

Please pray that Henley (and all of us for that matter) can get healthy, stay healthy and be 100% ready for the surgery at the end of the month.

Perfect Timing

I am so thankful for God's mercy and the way that He has continued to answer our prayers. It is so evident that He is in control and there is a much greater power at work in our situation. Even when it's inconvenient and frustrating for our plans to get changed, God is showing us that He knows it ALL. He has been so faithful to walk us through every single step and show us that everything He is doing is for a good reason. 

Friday when Henley started showing signs of getting sick I began to worry. "What if....." blah blah blah. It's so silly to worry when he is constantly saying "I've got this Leslie! Let go and trust me. I can handle this too." I hate that sometimes my human nature takes over and lets the doubt creep in. As if I could honestly do something about all of this anyways. 

As I said in my previous post. Last night our small group from church and a few close friends came over to our house to pray over Henley. Before we started, I asked everyone to please pray specifically for this runny nose and cough to subside because I knew they would probably cancel the surgery if she showed any signs of being sick. I said to everyone that if for some reason the surgery was cancelled that we would take that as a sign from God that tomorrow was not the day HE had planned for her surgery for one reason or another. 

After everyone left we started getting everyone to bed. (I'm repeating my last post here) I felt like Henley was breathing a little bit harder and her coughing was a little bit more frequent so I decided to give her a breathing treatment to see if that would help any. It didn't and so I put her to bed in her room which is practically a rainforest at this point with the humidifier on full blast. About 30 minutes after I put her down her coughing got more and more violently. I went in to check on her and it was obvious she was trying so hard to go to sleep but just could not get comfortable. I decided to give her some homeopathic cough and cold medicine to see if that would help her calm down and go to sleep. The second I opened the door to her room to give her the medicine I could hear her gasping for air. It was shocking to me to see how quickly she has gone downhill in just 30 minutes. I told Adam to come listen to her and he agreed it was pretty bad. We tried to wait it out and let the cough medicine take effect so we went downstairs and listened to her on the monitor. By this point it was 10:30 pm. We sat there and just stared at each other. I was just frustrated because we were both tired and I knew that this was going to be another long night. We sat their going back and forth with which neighbor to call to come hang out at our house while we took Henley to the ER. Frustrated, I called my friend Chesley and told her that I felt like we needed to take Henley in. Being the most wonderful neighbor and friend she was willing to come right over. (Thanks Ches!) 

Chesley heard Henley in the monitor and agreed that we should go. When I went up to get her out of bed she had thrown up all over everything. I wonder how many times I have cleaned up throw up. Seriously, its a glorious day if we don't deal with some kind of bodily fluids. Sometimes, I think a vacation would be a day in which I didn't have to force feed anyone or be thrown up on. Wow, my standards have really lowered! 

After an ER visit, a croup diagnosis and finally getting to bed at 2:30 am Zane decided that he would wake up an hour early at 6:30. BOO! He was ready to play and we were totally worn out. 

We went to our pre-op appointment at 11:00 am and when we got back to the room Dr. Robert's nurse came in. Having had no idea of the night we had she started off with "I was going to call you this morning, but I figured you were already on your way down here. I am so sorry to tell you this, but Dr. Roberts has had a family emergency and he is out of town tending to that. We are going to have to move Henley's surgery to Thursday". I immediately thought "Wow God, you sure know how to get your way when you want something changed!" So far he has changed just about everything that we scheduled and put it on a different date. Don't believe me? Go back and read. Last February at our scheduled MRI we had a crazy blizzard that kept us from that. Our scheduled MRI in Sept, Henley gets pneumonia, Our re-scheduled MRI gets bumped because of a doctors schedule. We are given two dates for a re-schedule and we choose November versus Oct 19. God chose Oct 19! He changed Adam's trip to China and all of our plans that week to make it so that we were in the hospital and having her MRI on that day. I mean who can argue with that?!? I just wish God would tell me what date He has in mind so I could stop planning things on my own.

When we told the nurse that we thought they would cancel it anyways because of our little ER visit last night she said that she needed to call Dr. Roberts personally and see what he said about the croup. She came back in after talking to him and said that he wanted to postpone it for 6 MORE WEEKS so her lungs could heal. After my initial frustration and thoughts of "oh my goodness, when is this going to be over?!?!" I was reminded by my sweet husband that God totally had this planned all along and He saw this day too, just like he has seen the others.

We should have a new surgery date set tomorrow. Stay tuned. Keep praying.

New Year, New Deductibles

So we are here at The Cooks ER with Henley and its 12:30 am. Adam and I are so tired, Henley is being entertained by an iPhone. 

Tonight we had a great prayer time with some of our good friends. About 25 people showed up without their children to come and pray over Henley. So humbling to have people take time on a holiday and come spend some of their night with us. 

Henley started having a runny nose on Friday afternoon and then started coughing today. It got worse through the day & it was bad enough that I felt I needed to give her a breathing treatment before bed. I put her to bed with some warm water to drink & her humidifier on full blast. About 30 min after I put her down I heard her moaning and struggling to breathe in the monitor. She had a very barky cough and had stridor. I have heard a lot of things but never a cough and struggle like that. I told Adam we needed to take her to the ER right away. 

So since we are scheduled for surgery in 1.5 days I felt like we needed to get this figured out & under control. However, I have no idea what they will say tomorrow in pre-op. Its very possible they could call off the surgery tomorrow.

Results are in. Henley has croup. I suppose I will call surgery pre-op in a few hours to see if they will still consider surgery or if it will be postponed. Sigh. 

God, what is the lesson here?

Specific Prayer Request

Leslie and I have been asked by many of you for specific things for which to pray. I think we all know that Henley needs healing, but it's nice to be able to be as detailed as possible so that nothing gets left out. Before I get into that, there is something that has convicted me recently that I would like to share. Over the past few weeks I have been studying the book of Revelation with the help of an old series by Francis Chan. The whole series has been great, but there was a passage that stood out to me last week. It is Revelation 4:3-11, which describes the throne room of God. I won't write out the whole passage as it is rather lengthy, but I want to point out some things that have helped transform my prayer life.
In verse 3, John is describing the appearance of God: "And he who sat there had the appearance of jasper and carnelian, and around the throne was a rainbow that had the appearance of an emerald."

It's difficult, if not impossible, for my non-creative mind to even grasp what John is saying. Maybe some of you other artsy types can, but not me. Even those that can still wouldn't be able to provide a clear picture of what God looks like. John uses the most beautiful and luminous colors he can think of, but avoids a precise description of God's visible features most likely because there is no way for him to describe with worldly terms what is not of this world. I have no doubt that John's description doesn't even hold a candle to the actual appearance of God. He is more beautiful than anything our broken minds can fathom.

Then in verse 5, he says that "From the throne came flashes of lightning and rumblings and peals of thunder."

I love thunderstorms. I love watching them roll in from the distance, hearing the thunder rumbling, seeing the flashes of lightning and occasionally a bolt touch the ground in the distance. I get a sense of God's power in them. John says that this power emanates from the throne revealing the awe inspiring nature of God's glory.

The subsequent verses describe the scene going on around the throne of God. There are four living creatures with wings, one with the face of a lion, one the face of an ox, one the face of a man, & one like an eagle. Surrounding God's throne are 24 other thrones with elders seated in them. The creatures and the elders never cease in giving praise and glory to God. I don't totally understand all that is going on here, but, to me, this shows that all creation exists to give glory to God.

This passage, when viewed by itself, can be pretty intimidating and confusing. But when viewed in the context of the gospel, it intensifies my worship of Him to know that this all-powerful, sovereign Creator God loves us so much, that he came into our world to save us from our brokenness. It has changed my prayer life because instead of just starting my prayer with "Dear God, thank you for this day...", I start it by meditating on this image of God's throne room and the beauty and power and worship that is taking place which causes me praise God for His infinite power, beauty, love, & wisdom. By starting my prayer doing something that God created me to do, it allows me to connect with God deeply through the Holy Spirit inside of me. Once I am fully connected in this way, the rest of my prayer flows uninhibited and I feel God's presence and that he is hearing every word, whereas before I sometimes felt as though my prayers were just going out unheard.

I'm sorry if I got a little preaching and long-winded, but I truly believe that if we could all take 30-60 seconds at the beginning of each prayer to meditate on who God actually is, then our prayers will be so much more effective. So I will ask each of you to please do this the next time you pray and see what happens, especially as you are preparing to pray for our sweet, little Henley. Now, on to the requests...

-Pray that God completely heals her to the point that surgery will not even be necessary. There will be an MRI done before they begin, so they will be able to tell if something has changed before they make an incision.
-Pray for our neurosurgeon Dr. Richard Roberts and his team that will be assisting in the surgery.
-Pray for our neurologist Dr. Brian Aalbers & all of the nurses that will be caring for her.
-Pray for surgical "Plan A", which will be explained in the next post.
-Pray for no complications, minimal blood loss, and no infections.
-Pray for a quick recovery and minimal hospital stay.
-Pray that Henley will be comfortable with someone other than Leslie.
-Pray for protection around Henley in the months to follow the surgery.
-Pray for the surgery to be effective in eliminating all of her issues (gagging, choking, vomiting, speech, weight gain, reflexes, balance & coordination), and for no more surgeries to be necessary.
-Pray for the people who will be caring for Haven & Zane while we are in the hospital.
-Pray for Leslie and I to have strength, peace, good health, & a moment or two to break away and relax.
-Pray that Haven & Zane are minimally affected by all the chaos around them.

As always, we thank all of you for all the love and support you have shown. We can definitely feel all the prayers that have been sent out on our behalf.

Calm before the storm

Adam and I both have been meaning to write. I feel like we are right in the middle of the calm before the storm. We have had two more doctors appointments since Christmas. One with our Neurosurgeon and one with our Neurologist. Because so much transpires from one week to the next for us, it was very important for Adam and I to get one more appointment with each of the doctors to get answers to all of the questions we have come up with since our last appointments. The last month has been filled with tests, blood work, unexpected developments which resulted in confusion....oh, and Christmas.

We had a really good Christmas. We made every effort to be as low key as possible and really soak up the family time we had together. We hosted Christmas celebrations for both mine and Adam's extended family and that was really good. We love to have people in our home and it's sometimes easier for us to host events than pack up our little circus and drive all over creation for the holidays. We hosted a brunch on Christmas Eve for my family and it was such a good time. Before everyone headed home my uncle decided to have everyone pray over Henley. Listening to the prayers from my family was so humbling and was a great reminder that we are not alone in this trial. I am thankful to be surrounded by other believers who are on their knees on our behalf.

The night before our appointment with Henley's neurosurgeon, Haven asked us if she could come with us to the doctors appointment to meet the doctor who was going to be doing surgery on her brain. Of course we were fine with her coming with us. I am thankful she wants to be a part of what is going on and we are doing our best to make sure she is not left out. When I told my dad about her request he said "I want to meet him too, can I come to the appointment?" So armed with our list of questions and a few extra family members we walked into our final appointment with the surgeon before the big day. The appointment went really well. The doctor spent a solid hour with us answering every question we had. We left the appointment feeling confident that we were making the right choice. We discussed the genetic issues with him and questioned whether or not that could be the real problem or if these things were all Chiari related. He said that it was a tough question because most times in medicine the answers are clear cut. For example: you have a tumor and it's causing problems, you remove the tumor and it most likely solves the problem. For infections you take antibiotics to cure the problem, for cancer you have a protocol for that as well. For Chiari it's more of a toss up as to whether the procedure will fix the problem.

Tuesday of this week we met with our neurologist. Haven wanted to go to that appointment as well. It was another really good appointment and we got some really good time with the doctor. It's been about a month since we saw him last and so we were anxious to discuss all of the tests and recent blood work results. He agreed that the genetic issue was unexpected and made things a bit more complicated. He was also shocked that the EPS results came back in the normal range because it was obvious to all of us that there was a problem with her reflexes. Either way he explained that her Chiari is considerable and there is a significant amount of pressure being put on her brain stem because of the amount of crowding at the base of her skull. This is what we believe is causing the majority of her symptoms. For example her overly sensitive gag reflex, her frequent coughing, gaging and throwing up spells, her inability to gain weight, her problems walking and her vocal tone/ slurred speech. Because of this he said that it was still a good idea to go ahead with the surgery. In his opinion it would only be a matter of time before we were having to do the surgery for one reason or another.

So many of you have asked us to post a list of specific prayer request as well as details about the actual surgery and recovery process, so we will be posting about those in the next few days. As always, thank you so much for the prayers, emails, texts and Facebook messages. We are so thankful for every prayer going up on our behalf.

Geneticist Appointment

I am not sure why I was taken aback when I got the call about Henley having a genetic abnormality. I mean, at this point very little surprises me. I had just been at Target with Haven and we were getting ready to pull out of the parking lot when I got the phone call. The nurse from our neurologist office said that she had just received Henley's micro array genetic test results and explained that she has what is called a "copy loss of her 16th Chromosome". Uhm, okay? Times like this I wish I had paid more attention in school. I quickly rummaged around to find a scrap piece of paper and a pen to write down what this woman was telling me. I knew this would be one of those things I needed to take home and google to make sense of it. It was like another out of body experience for me in which I only heard key phrases "can effect cognitive development and speech" "Higher risk of Autism" "Autistic characteristics". The nurse told me that we needed to call and make an appointment with one of the geneticists at Cook's as soon as possible to discuss Henley's case and work on getting Adam and myself tested for these same things. Reason being that if we had somehow passed this abnormality on, it was possible that Haven & Zane might be at risk as well. However, if this is a new thing in Henley then we can probably rest assured that the other two don't have it. I called to make an appointment and the soonest we were going to be able to get in was mid February! I told the girl that Henley was scheduled for brain surgery in three weeks and that some of the complications from this genetic abnormality were our reasons for doing this surgery. I told her that we really needed to talk to a geneticist ASAP so that we could make absolutely certain that we were making the right choice for her. Our thought was, if her problems are mostly due to a genetic abnormality that we can do nothing about, then what is surgery going to accomplish? The scheduler put me on a wait list in hopes of someone else canceling their appointment and us being able to get in earlier. While we were in the hospital for Henley's 24Hr EEG I got a call that an appointment had opened up for Tuesday. I love how God orchestrates things! In the meantime I was able to speak at great length with a genetic counselor and she directed us towards a couple of great websites to read up on Henley's abnormality before our appointment if we wanted to. Adam studied up on this information and was able to explain most of it to me. Fast forward to the appointment. We met with the geneticist and after looking Henley over and talking with us about her, she stated that she was not concerned because it appeared that Henley was developing normally despite this abnormality and because this particular abnormality only appears in 3 out of 10,000 people in the general population there was little known about this particular deletion. We told her about the Chiari and wanted her opinion on the surgery etc. She told us that in her opinion the two items were not related and that the Chiari was a separate deal all together and that we should continue on with our plan to do the surgery. After checking her reflexes she noted that Henley did show some muscle weakness and delayed reflexes (both possible symptoms of Chiari). We left this appointment with another firm confirmation that surgery was the way to go.

24 Hr EEG & other stuff

Adam again: Last Thursday the time came for us to head back to the hospital to have Henley's 24 hour EEG in order to investigate the seizures further.  As you would expect from a 24 hour test, there was an overnight stay involved, so we had to enlist the help of Grandmommy for Haven and Zane.  She met us at Cook's the morning of and we handed them off to her along with an overnight bag.  We then went inside with Henley to get registered for her procedure.  We finally got check into a room around 10:00 am and they came in to check her vitals and get us all settled in.

While we were sitting in the room, a friend texted Leslie to ask her if we were planning on going to Haven's Christmas program at her school that night.  Uhhh, what?  Apparently, in all of our madness, we failed to look at Haven's calendar.  I quickly had a vision of Haven, 30 years from now, in a therapy session talking about how we forgot all about her Christmas program.  Leslie quickly made a call to her dad to see if he could possibly come by the hospital after work to watch Henley while we made the trek back to Keller to take Haven to her program, to which he agreed.  Disaster averted.

After about a 2-1/2 hour wait and some Chick-Fil-A, they finally came to get Henley all hooked up for the EEG, which looked similar to the EPS we did the week before.  This process took about 45 minutes and afterwards she was given a backpack to hold the monitoring device so she could walk freely around her room.  Attached to the monitor was an "event" button that we were to push anytime she showed any signs of abnormal or unusual activity.  This would mark the event on the EEG to give the doctors a better idea of where to examine the results, since they would have to go over 24 hours worth. There was also a camera in the room that followed Henley wherever she went.  The first 30 minutes of the test they did various triggering exercises like flashing a strobe light her eyes, blowing a pinwheel in front of her face, & covering her eyes then quickly uncovering them.  All of these things are designed to trigger seizure activity.  Of course nothing happened, so we spent the rest of the afternoon with Toy Story 3 and Tangled on constant rotation while trying to keep a 2 year old with wires attached to her head occupied.  She could move around the room, but there was a power cord coming out from her "backpack" which we had to carefully untangle from all of the furniture in the room while Henley toddled about with no regard to the mass of wires coming out of her head.  Finally, we got her to take a nap around 3:00.

At 4:30, Kent made it to the room and while Henley was still asleep we were able to sneak out of the room without much fuss (not that it mattered anyway because Henley loves her Granddaddy).  We were able to make it back up to Keller, where BZ was staying with Haven and Zane, and get some dinner for ourselves and Haven.  We had just enough time to get Haven in her holiday outfit and head to her school for the program, which was at The Hills Southlake campus.  Amazingly (for us), we made it with plenty of time to spare and were able to get a seat front and center.  The program lasted about an hour and Haven's class went last (of course), but it proved to be a great distraction from the events of the day.  We were also able to see some family and friends and received some much needed encouragement.  We then took Haven back home, said our good nights to her, BZ, and Zane, and then jumped in the car to head back to the hospital.

We got back to the hospital about 9:00 to find Henley & Granddaddy playing with puzzles in her bed.  They had a great time while we were gone and no problems to report.  Kent said his goodbyes and we prepared to hunker down for the night.  The bad part about being monitored with a camera is that the doctors request that a light is left on at all times so that they can see what is going on clearly, so this made sleeping a little more difficult (at least for me on the hospital couch).  The good part was that we requested the staff not get any vitals during the night so that we could be as undisturbed as possible.  Henley did well all night, until she decided to wake up about 6:00 in the morning.  Leslie went down to get us breakfast and we spent the rest of the morning doing pretty much what we had done the afternoon before. Around lunchtime the tech came in and said that we were done and that they really didn't see anything.

Before we were discharged, we asked the NP if she would look in Henley's file to see if the results of the EPS had been posted.  She checked and found that they were.  The results: upper extremities were normal, lower extremities were normal.  Huh??  That's right, the test we had done the previous week where we were sure that it had showed that her right leg was not responded like her other extremities had come back all normal.  Of course we immediately asked to speak to the neurologist right away, but, as you can imagine, he is very busy and we would've had to wait until around 3:00 to talk to him (which in doctor time means 5:00).  Since we had already been discharged, we did not want to take the chance of getting stuck at the hospital any longer than we had to, and boy do we know all about being stuck in a hospital.  The best we could do was schedule an appointment with him on December 27th to discuss the results of the EPS.  This had obviously thrown us for a loop and had us questioning our decision to go ahead with surgery.  This also led us to schedule another appointment with our neurosurgeon on December 22nd just to review everything that we have learned in the last month since our appointment with him when he said she was a candidate for surgery.

In addition to these results, Leslie had been given the results of the micro array genetic testing we had done for Henley.  It turns out she has a micro deletion of her 16th chromosome, which can cause speech & cognitive delays, put kids at a higher risk for autism, and also put kids at an above average risk for seizures.  All of these results seemed to muddy the waters quite a bit for us.  We were able to get in with a geneticist on Tuesday to go over these results and hopefully clear some things up.  Our prayer at this point is for clarity and a clear realization that the Chiari surgery is our best option, because at this point we aren't so sure.

Testing 1...2...3

Hey there, Adam here, making my first ever post after having the computer sat in my lap by Leslie and her saying, "Here ya go."  So here I go...

Last week was the beginning of a series of tests that were recommended by our neurologist that we felt would give us some clarity on whether or not we should move forward with surgery.  Since Chiari can manifest itself in so many different ways, it's hard to tell what is being caused by the Chiari and what is not.  We had already been told by our neurosurgeon that she is a candidate for surgery due to her overly sensitive gag reflex and her tendency to vomit more frequently than the average child (tons of fun!).  But for us, we needed to exhaust every resource before jumping into brain surgery with our 2 year old.  And besides, he's a neurosurgeon, of course he is recommending surgery.  So in our appointment with the neurologist, he noticed that her reflexes in her right leg were off and that she seemed to be compensating for it when she walked.  He said it could be because the Chiari was compressing the nerves in the back of her neck, which were not allowing her brain to talk to her foot efficiently.  He said there is a test called an Evoked Potential Study (EPS) that should be able to tell us if this was the case.  There it was, finally hope of some objective evidence to tell us clearly that surgery was necessary.  He also scheduled us for an Auditory Brainstem Response (ABR) test to see if the Chiari was having the same effect on her hearing, as well as a 24 hour EEG to investigate the seizures.

So last Friday, we packed up the whole family, along with Leslie's longtime friend Libby, and headed to Cook's for the EPS.  When we got there, they led Henley, Leslie, and me back to a testing room where we were met by a gruff old man who was at least 70 years old and weighed in around 250-300 lbs.  From the beginning Henley was not so sure about him, despite his attempts to endear himself to her.  I have to point out here that in all that Henley has gone through, from numerous pricks for blood to IV's to MRI's to a full out hospital stay, she has done it without even so much as a fuss.  But the way this guy was putting the electrodes on her seemed very rough and his hands were shaking the entire time he was doing it, which made Henley very uncomfortable and nervous (and made me feel like punching him in the face).  Leslie, who is not afraid to mince words, at one point even asked if he could try to be a little gentler.  Needless to say, it was a very tense and uncomfortable 15-20 minutes to start the procedure.  Once all the electrodes were placed on her head and neck, he then placed a device on her left wrist that sent out an electrical pulse that made her thumb move.  He then monitored the brain activity on a computer screen for about 10 minutes.  He continued to do this on her right hand, then her left leg without any real trouble.  When he got to her right leg, he had all kinds of problems making a connection.  He moved the electrical device a few times, and then ultimately had to turn up the intensity of the electrical pulse to get her foot to respond.  Of course, Leslie and I just looked at each other while this was going on and we both knew what the other was thinking, that this had to be because of the Chiari.  Of course, a doctor still had to read the results and give his official word, but we both felt like we had our answer.

In the middle of all this, Libby is out in the waiting room with our other two children.  Luckily, we were at Cook's and towards the beginning of the procedure I went out and walked them down to the main part of the hospital where there was an indoor playground.  All the procedures ended up taking around 2 hours, so we were very thankful that Libby was there to help.  Don't know what we would have done without her.

You'll notice that I said procedures because originally the ABR was scheduled for the following week along with the 24 hour EEG, but the tech said that since she was already hooked up he could go ahead and do it.  So we agreed and he got her all hooked up by placing what looked like giant headphones over her ears and then wrapping them with ace bandage to keep them on.  Henley was not happy about it at all, but luckily we brought the iPad which had all of her favorite cartoons on it (don't know what we would have done without the iPad either!).  The ABR took about 20-30 minutes and the tech said everything appeared normal.  But we felt like we had received the information we needed and sought out the neurosurgeon's nurse to start looking at surgery dates.  It was very heart wrenching and nerve racking, but we ultimately felt at the time like it was truly the best option and where God was leading us.

Allergies?

One of the avenues we decided to try with Henley was testing for food and seasonal allergies. Because I still have not been able to fully figure out the whole diarrhea thing and the GI procedures had not really given us the answers we were looking for at this point I made an appointment with an allergy specialist. Most importantly I was wanting to see if she was possibly allergic or intolerant to the one thing that she consumes so much of which is cow's milk. Our appointment with the allergy specialist went really well and it was very informative. We agreed to test her for all of the standard allergens and explained to me how people go about actually developing an allergy to certain things since none of us are actually born "allergic to ___". He also told me that even if the test come back and say she is not allergic to milk that she may intact be lactose intolerant and that could be causing all of the GI problems.

He asked me about Henley's medical journey and I told him the cliffs notes version of everything that had gone on up to this point. He sat there for a minute after I was finished talking and then said "I hope this doesn't offend you, but are you just putting off the inevitable surgery?" I know at the time he had no idea how this came across to me but it was exactly what I needed to hear. Adam and I have been praying for confirmation. Call me crazy, but I don't want just ONE doctor to tell me she needs brain surgery. I want EVERY doctor to tell me the same thing. Even though the decision is ultimately in our hands, I want it to be every doctors recommendation.

When I left that appointment I called my mom and told her what he said. Her response was "Leslie, it seems like everyone is on the same page as far as what Henley's next step is. Haven't 6 doctors told you the same thing?" I thought about it and went back through all of the doctors I had seen for her and realized this:

Neurosurgeon: Check

Neurologist: Check

GI Specialist: Check

Speech Pathologist/Feeding Therapist: Check

ENT Specialist: Check

Allergy Specialist: Check

At this point, we still have our final three neurological test to have run and we are waiting on some genetic testing results to come back to finalize our decision. I know it sounds like we are procrastinating on the surgery decision, but we just want to be 1000% sure that we are doing the right thing before we let someone operate on her brain and change her life forever. I say that because we know that once she goes through this surgery that there will be a lot of things in life that she will be prohibited from doing. Due to this type of surgery her head and neck stability will be compromised therefore making her a bit more "fragile". For instance we know that she will never be able to play contact sports, ride roller coasters or do anything else particularly jarring. We are also fervently praying that Henley is never in a car accident.

More Questions, More Answers, More Tests, More Direction

I am beginning this post with butterflies in my stomach. This week has been hard for me. Most days I am okay, and some days....not so great. I defiantly feel like I have a pretty good perspective with this whole thing, but I would be lying if I pretended to never have some really hard days. Some days I am an emotional mess and others I am able to operate as a task oriented machine. I am sure that the latter is a coping mechanism of some sort. According to my dad I have nerves of steel (I'm not sure I believe him). He actually told me last night that I have always been this way. I guess he would know. This week Adam has been in China and I have had all three children by myself. Not only was Adam gone, but my mom was on a trip with a girlfriend as well. Terrible timing for both of them to be gone at the same time, but its just the way it worked out. I was very nervous about the week because there were a lot of things on the calendar.


Tuesday the girls went to school and afterwards we all went to Henley's feeding therapy. Henley did AMAZING at therapy this week. She ate 2 chicken nuggets and did not spit them out or throw up! Granted, each chicken nugget required the consumption of an entire juice box to help her to swallow it, but who cares! Up to this point Henley has eaten zero meat. All that she eats are things that can either dissolve in her mouth or things that are easy to eat like pasta, mac & cheese and other things like that. She rarely will eat peanut butter sandwiches which will be the next item to conquer at feeding therapy. We are working on getting Henley's mouth desensitized to things being in there and so have been trying to use an electric toothbrush with her to really work on her senses and allow things to be in her mouth without gaging and throwing up. So far so good.


Wednesday I took Henley and Zane to the ENT Specialist. Adam and I had been told at one point that we might try to talk to an ENT about Henley and see if they felt like any of her issues might be linked to something that they could fix in hopes of avoiding brain surgery. We talked with the pediatrician and threw the idea around of removing her tonsils in hopes of making swallowing in general easier for her. We thought that if her tonsils were abnormal in size, that it could possibly be linked to the swallowing issues she is having. We also thought that maybe her speech issues were potentially due to constant fluid on her ears and if we were to put tubes in, it might improve her speech. Currently she sounds like she is a little muffled or "underwater" sometimes when she talks. So I took her to the ENT in hopes of them saying that her tonsils were huge and she had fluid on her ears and THAT was the reason we were having these two issues (and that it wouldn't be because of the Chiari Malformation). I realize this sounds crazy to WANT to have something wrong with your child, but honestly I would much rather be dealing with ENT stuff than brain stuff. After speaking with the ENT about Henley and having her tonsils examined, her hearing checked and her ears looked at, the doctor looked at me and said that unfortunately she didn't see any fluid on her ears and her tonsils looked normal for her age. She said that she didn't feel like there was anything she could do for Henley and that we probably needed to re-visit the surgery option for her Chiari to address these issues. Sigh...Okay, that is what I needed to know. Not what I wanted to hear, but still an answer pointing me in a direction.


On the other hand, she looked at Zane and after 4 ear infections in 2 months, this poor sweet baby is going to have Tubes put in on Monday. We have already tried the chiropractic route with him too and even the Chiropractor said that he just might have a genetic thing that prevents him from draining fluid from his ears well. That is not surprising since Haven had to have tubes and so did I. I think Henley is taking after her daddy on the ear thing. Last week he burst his left ear drum and that was super painful. I went ahead and scheduled Zane's procedure for Monday even though Adam is not scheduled to be home. I just can not wait one more day for this little angel to get some relief. I talked to Adam the other night about this and we both laughed at how putting Tubes in Zane's ears is such an afterthought right now with all of the other things we are dealing with. I remember when Haven was going to have to have tubes in her ears and we were both so worried about her and I really stressed over it. Now, its just crazy how easy it was to make that decision for Zane.


Thursday was a very important day for us. We had an appointment with Henley's neurologist at 8:30 in the morning. I dropped Haven off with a friend early that morning so that she could take her to school and my dad went with me to the appointment so that I could have help with Zane & Henley and have an extra pair of ears listening to everything that was said. These appointments are so full of information that its so difficult to retain everything that you are told. I had my list of questions ready and I took my iPad with me in hopes of being able to Skype with Adam from the office. Sure enough, Adam was able to be right there with us and talk to the doctor just like he was physically in the room. Technology is so amazing! (I realize that a year from now it will sound so silly to be so fascinated with this) Not only did we get to Skype with Adam, but I did take several recordings from my phone of what the doctor actually said to us so that I could go back and listen to it over and over again so that I really understood everything.


The basic summary of our appointment was this. The neurologist thinks that everything that Henley is struggling with is related to the Chiari except the seizures. However, I have been doing my own research that gives reason to believe that the seizures are most definitely related to the Chiari too. Of course most neurosurgeons will also tell you that Chiari is not genetic, but our neurologist said off the record that he believed otherwise. He also told us about a clinical trial that Duke University is conducting on Chiari and genetics that he thought we might want to enroll Henley in. I will be looking into that this week as well. The doctor was still concerned with Henley's reflexes on her right leg. He watched her run back and forth down the hallway and observed her overcompensating for the reflexes not responding as quickly as they are supposed to. She is sometimes either dragging her right foot or kicking her ankle out to try to balance herself while she is running. To anyone just watching her, you might not notice the difference between this and a goofy toddler run, but with all of the other information we have, it makes her "goofy toddler run" a bit more concerning. With Chiari there are possibilities of paralysis and loss of mobility if there is continued pressure being put on the part of the brain that controls the movement. The doctor thinks that this might be the case here. During our appointment he asked me if Henley had ever had any headaches to which I immediately replied "How can you tell a 2 year old has a headache?". He said that most patients that have Chiari get migraines or really terrible headaches, and sometimes when they had terrible headaches they would get nauseous and throw up. It was like a light bulb went off for me. Oh my goodness, yes! Maybe this can explain the random bouts of vomit. Thinking back on it when she would get really worked up and cry a lot she would almost always throw up. When I cry a lot, I usually get a headache too, so this makes sense to me. We went on to talk about doing some genetic testing as well as some other test. The doctor said that her chiari is considerable and that he had seen children with smaller chiari's than hers who were completely paralyzed and then other children who had much larger chiari's than hers and had no symptoms at all. That is the craziness of Chiari. It can affect every person so differently, so its a really tough thing to gauge. We talked about the EEG that was done in the hospital and he said that basically that test was being thrown out the window and it was completely irrelevant. At the time of this EEG she had been given anti-seizure medication and so therefore the test was not going to give accurate findings. He said that he wants to have Henley come back to Cooks overnight to do a 24 hour EEG study so that they can get a really clear picture of what they are dealing with. Also they are going to do what is called an Evoked Potential Study which is basically where they will put some electrodes on her head and stimulate her toes and feet. By doing this they will be able to see how long information takes to go from the feet to the head and which pathways it takes through the brain. The EPS will be able to tell (hopefully) if the reason for the weird reflexes is due to the Chiari or something else. Crazy right? I am so fascinated with all of these cool tests that they can do to find out everything you never thought you would get to know about your child.

For those of you who are visual learners (like myself) I finally have these images in my hands I am happy to share them with you so that you can understand what in the world I am talking about when I say "Chiari".

Blessings in the Journey

I have been wanting to write this blog post for a long time now. I have so many "God things" I feel like need to be reported, and I feel like I would be doing a disservice to God and to those of you who are reading if I didn't show the back story too.

First of all let me say this. I truly believe God will not give you anything that He knows you are not capable of handling. I know there have been several times in my life where I have asked God "Really? This too? Are you serious? I think this just might kill me!" I can think of several times in my life when I have been crying on the floor and unsure if I would ever be able to have the strength to stand again. I remember vividly, times when I thought I could not go on and wondering what the purpose was of what I was going through. I also remember thinking that there was no way God could make good out of (fill in the blank). However, the truth is God can. God can make good out of everything. God IS Good, and he can not help but make good. I know in my heart that all good things are from the Lord and the bad things in our lives are the things that satan tries to trip us up with. If we allow satan to get the best of us, he wins. If we continually seek the Lord in even the worst of situations and try to see beyond ourselves in the journey or the absolute chaos that the Lord will open our eyes to little pieces of his master plan for our lives. I feel like the times when horrible things have happened in my life, the times when I chose the attitude of "Why me? What did I do to deserve this? I can't believe God would allow me to go through this....I've been so good!" those are the times when the struggles seem to drag out for eternity. When I am constantly looking inward and wondering how this is going to affect MY life I seem to never be satisfied with the answer. Why? Because it's not perfect. Who wants to live a life where things suck all of the time?

However, when I am able to change my perspective, it instantly changes my attitude. Through this current journey with Henley's health issues I have often thought back to things in my life that have brought me to this point. Lessons that I have learned through terrible heart breaks that have in various ways prepared me for this specific journey. It's as if life is a series of building blocks. You are walking along, you trip over a brick that was put in your path, you pick it up, learn from it, and add it to the stack. At some point we are able to stand on top of the platform of bricks we have collected through the years and look back down at the path we have traveled and now with the "firm foundation" under our feet, and with the knowledge and experience we have gained along the way, we are able to get a glimpse of the person God was molding us to be through the journey.

I will not go into all of the other lessons that I have had to learn in my life to get me to where I am now, because you guys would be reading for YEARS! But I will start with this. For those of you who know Adam and I, you were around last August when our road had a huge stumbling block. Henley was born in November, and although she was an awesome baby and ate well and slept through the night at 6 weeks, she had "issues" from the very beginning. During the first two weeks of her life we were told that she might have a blood disorder based off of her PKU blood work they took when she was born. At 3 weeks we determined that she had serious reflux and was going to have to be on prevacid. Then at 5 weeks she spiked a high fever and had to go to the ER, have a spinal tap and various other test to make sure she didn't have meningitis. At 6 months during her well check they noticed that her head size had jumped from the 64% to the 98% and her body weight had gone from the 25% to the 3%. When looking at her growth chart, it was shocking and a red flag went up for our pediatrician. They decided they wanted to do an ultrasound on her head at that point to check to make sure she didn't have a build up of fluid around her brain. Thankfully, no fluid was found, but there was a small cyst on her brain and they wanted to do further investigation on that cyst. Up to this point with Henley we had gone through several things that had been preparing the road ahead. God was gently showing us that we were not in control of our situation. When we found out that Henley was most likely going to have to have an MRI on her brain, it was quite a rude awakening for me that something major might actually be wrong with my 6 month old baby. I struggled with this as any mother would. One night in particular I was up in her room rocking her to sleep and I was literally crying out to God because I was so scared and had no idea what was going to happen with her. I knew (from other bricks I had already tripped over in my life) that I had zero ultimate control over the life of my child, and the only one who was truly in control was God. I sat there crying while holding this tiny little 13 lb baby, and I told God that I knew that I was not in control and that He had given her to me as a gift. I thanked him for entrusting me with her life, but prayed that He please give me the strength to be the right mother for her. I told Him that I knew I was just her earthly mother, and that she was His before she was mine. I told Him that I knew that He already knew the road ahead and all about Henley's body. I basically relinquished control of Henley back to God which in a way put me more at peace. I knew from this point going forward that I had laid everything with her back in His capable hands and that it was no longer all up to me to be everything for Henley because God was already more than I could even dream of being for her. Looking back on this night was truly the turning point for me.

When Henley was 8 Months old we found out that we were going to be expecting another baby. We were excited, but shocked that we were going to now have two "babies" in the house along with our "Big Girl" (the three year old!). As overwhelming as this was to just think about only God knew how much more overwhelming things were about to become. When Henley was 9 months old and I was 11 weeks pregnant with Zane she had her MRI and we found out that Henley had the Chiari Malformation (Key-Ari).

Adam was scheduled to leave for China two days after we found out. The night before he left for China was my birthday and we decided to go out to dinner anyway. That night was so miserable. Worst 28th birthday ever. We went to dinner and tried to enjoy ourselves but nothing felt right. Everything was wrong. When we got home we were getting ready for bed and Adam and I just both started crying and just wept and wept. He didn't want to have to go, I didn't want him to leave. I was such an emotional basket case and was afraid to be myself in front of the girls. I spent a lot of time wondering what I might have done during my pregnancy with Henley to "cause" her to have such problems. I really took on her diagnosis for a time and felt responsible for what was happening to her. Although I knew that I did everything the same was I had done with Haven and she was fine. I still worried. Not only that, but I was pregnant again, what if this baby was messed up too?!?! Even though I felt like I had given it all up to God, for a time, I took it back and tried to own it. I just knew it was somehow my fault.

While Adam was gone to China for two weeks, God really came through. From the minute Adam left, I had a steady stream of some of my closest girl friends come in from all over the country to spend a couple nights with me and help me with the girls. One friend came from Austin, my sister in law into town, my best friend from New York, my friends from Dallas. They were there to help me take care of the girls and process everything that was going on in the down time. They all really helped fill in the parenting gaps while I was temporarily unavailable emotionally. God knew my heart and soul and provided exactly what I needed at this time.

While Adam was gone, I was able to schedule appointments for the pediatric neurosurgeon and while at one of my doctors appointments, my OB/GYN decided to help put my mind at ease that she would send me for a HD Sonogram of Zane just to make sure that his brain was developing without any problems so that I would not constantly be worrying about him. Another God thing in my opinion. God knew I needed peace of mind and so he arranged for me to get that. He is so good!

Throughout the next year God continued to put us in the path of the right friends, right doctors, right timing etc. to place us exactly where we needed to be for the next step in the journey. Beginning this past summer when Henley started having more issues I began to notice that in my conversations with doctors and strangers I would get the question "Has Henley had surgery to fix the Chiari yet?" I would always pause for a minute and say "No, we have been told she doesn't need surgery". After a few of these conversations I told Adam that I was starting to feel like God was preparing me for the news that Henley was going to need surgery. I told him that I was wondering if God was slowly desensitizing me to the very real possibility that surgery would be the road we would travel down.

August came and the MRI was on the horizon and we were ready to get some answers! But God said "Not yet". Henley got pneumonia IN AUGUST, IN TEXAS! Pneumonia was one of the only things that could have happened to keep Henley from getting that MRI at the time. So I knew with a diagnosis so random when it was 150 degrees outside, that God was trying to tell us something. He was saying "not yet, I still need to show you more". Through a God appointed conversation with my best girlfriend Lauren while she was here visiting, I felt that it would be a good idea to have Henley see a GI Specialist. Lauren left town and Zane got sick. I think it was God's way to get me in to see the pediatrician pronto....because I might have put off the conversation I had with the doctor that day until a later time. While we were there for Zane, we talked about Henley and I told her that I felt like we needed to see a GI Specialist. She agreed that it would not be a bad idea and so she sent us a referral to a doctor.

I called to set up the appointment with the GI and I was not able to get in to see the doctor we were referred to because of "scheduling conflicts".....or God had another plan in mind. I did not know this at the time of our appointment, but the GI we ended up seeing not only happened to be that same GI that one of our good friends highly recommended, but she graduated from ACU and is a Kojie!! I mean seriously? Come on now, what are the odds we would be blessed to have a doctor who not only is a believer and we have so many personal connections with?!?! At this appointment we were trying to schedule the MRI and all of the GI procedures and I am not even kidding when I say that it took 45 minutes in the schedulers office to get this MRI thing on the books. It was nuts trying to get all the doctors who needed to be a part of that procedure available all on the same day and time. While we were sitting there, the girl said "I can do October 19" to which we had to say no because Adam was scheduled to leave for China on the 18th. I know what you are thinking....Adam stop going to China!!!
Anyways, so the next available time was November 2nd. We agreed and set the date. I was frustrated because that meant we were going to have to wait another month for results. However, I told Adam and maybe even a few friends of mine that if God wanted us to do the procedures earlier, I was sure that He could arrange everyones schedules. HA!

Sure enough. Henley has her seizures on October 16, we get admitted to Cooks and what ends up happening? God re-arranged EVERYONES schedules and we were having her MRI and other procedures on October 19! God allowed Adam to be able to change his trip to china on a day's notice and my dad was able to go in his place....that is right. American Airlines transferred a non-transferable ticket people. God can do anything!! LOL. Adam said "Man, it makes me wonder what was so important that we HAD to the the procedures two weeks earlier than originally planned?" Maybe it was just a blessing from God for me to know two weeks earlier what we were dealing with? That is still waiting to be seen. However, I will say that God's timing is perfect.

We are still taking things day by day and everyday watching God reveal himself to us in sweet ways through this trial. We are finding peace in the prayers we are receiving from our friends, family and even total strangers! We have been continually blessed by people bringing meals and going out of their way to help in little and big ways with our children. I am learning such a beautiful lesson about servanthood right now and I am thankful for the journey. I am truly changed forever and will love and serve differently in the future. Be blessed.