10th MRI Results

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

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

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

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

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

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

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