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".