Henley Update: Part 1

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

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

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

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

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

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

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

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