Happy Saturday! I don’t know that I’ve ever been so excited to see the weekend… This week has been all levels of crazy for our family. Our big girls started a new school on Monday, which was a huge answer to prayer, but has taken some getting used to, especially for my middle babe who has always been homeschooled!
We had Harper’s appointments at Duke scheduled for Thursday and Friday, but on Wednesday I ended up in the ER with heart palpitations and blood pressure issues- about a year ago I started having problems with my thyroid, and apparently it made a sudden flip and threw everything out of whack. After a few hours of monitoring and loads of meds, they let me go home to rest and advised me not to travel for Harper’s appointments.
Fortunately my doctor knew how important these appointments were for Harper, so she gave me the okay to travel as long as I promised not to drive and to keep a close eye on my heart. Thankfully I have a great family and they jumped right in to make all of that happen.
Our first stop was Harper’s MRI- this was our first MRI without radiation or sedation, and she was not happy about it. I had to lay on top of her and go in the machine with her, holding her head still so they could get a clear picture. She was terrified and it broke my heart to hear her telling me she was scared and begging me to make them stop, but it was over in less than five minutes and it was a relief to not have to pump her body full of harmful stuff!
We met with Dr. Fuchs (her neurosurgeon) after that to go over the results. He showed us this scan in comparison with last year’s scan… Harper has a porencephalic cyst, hydrocephalus, and periventricular leukomalacia. The cyst has not grown or changed since her surgeries at birth. The hydrocephalus is under control- there is no fluid building up, and her right ventricle actually seems to have slightly decreased in size. It’s a very, very small change, but a change for the better!
The main thing Dr. Fuchs is monitoring is the periventricular leukomalacia- this is the dead brain tissue Harper has. When you look at the scan of Harper’s brain, there is a huge gray blob on the left side, taking up about 3/4 of that half of her brain. That is dead tissue, which the doctor explained is basically like having a hole in the brain. When Harper had her first brain surgery, she suffered extensive brain hemorrhaging that spread over that area of the brain and killed it. Fortunately, she was so young that her brain rewired itself and she’s able to function very well in spite of that. This week’s scans indicate that there is no new or active bleeding anywhere, and if you look closely, it even appears that she has some new brain tissue growth outside of that area, which will be great if it continues!
We met our new neurologist on Friday, and made some headway with figuring out these seizures. Harper currently takes two medications twice daily, and has two additional medications to use as needed. They are increasing her dosage on one of the daily meds, and also increased the dosage on her emergency med as she has outgrown the previous amount.
The other daily medication is causing some side effects so they decided against increasing it at this time. It prevents Harper from sweating, which is a major issue in this area in the summer. We don’t go outside much at all because she so quickly overheats. She has also had some spells of feeling like bugs are crawling on her and seeing “sparkles” in her eyes, which they believe are also side effects of the Topomax. The goal is to get the seizures under control and then possibly wean off of that med.
I had some questions about Harper’s development- she has had to resume OT and PT, and potty training is not working (she’s willing and has a good attitude about it, but it just isn’t clicking). The neurologist decided that we need to come back up and see a developmental specialist to get a good overall look at where she is developmentally and make a plan.
The last referral made was for a sleep study, which we have to travel up for Wednesday. Most of Harper’s major seizures occur while she is sleeping, and the neuro said her tonsils are huge. Her sleep study last year showed mild sleep apnea, and the concern is that it has gotten worse. She said if that’s the case, that could be triggering these nighttime seizures. So we will have another sleep study done this week, and possibly be referred to the ENT again to see about a tonsillectomy.
So, lots of things being looked at, and hopefully we will get some answers. In the meantime, she gave me a card with their on-call numbers so that if Harper has any breakthrough seizures I can call immediately and they can adjust medications. They also want me to call if Harper has to go the ER so that they can call the ER and give instructions on how they want her treated.
As always, thank you all for praying over these appointments for us- your prayers are felt and have been answered. Good reports and good progress this week, so keep praying for Harper’s next steps and the sleep study this week! I don’t particularly want her to need surgery for anything, even just tonsils, but if that would help her seizure activity and sleep, it would be worth it. We are grateful for all of your prayer warriors out there ❤️