The Long, Long Summer

Such a long, long month and an end to the seemingly longest summer in history. I’m not sure what it is about the end of summer, but it always seems like a whirlwind of pool parties, doctor appointments, and open house nights that consume us all until we reach that glorious finish line around the middle of August. Yes, God bless the starting of school. Eli finished his first full week of first grade and Mira started preschool at IDC this week. I don’t think it could be any sooner to get back into some resemblance of a routine to keep our sanity these days.

So, starting from where I left off in the middle of July…….. Mira’s MRI results came back a few weeks ago and it was completely normal. No indication of anything abnormal or any sort of hint as to why she is still having daily seizures. It’s not as though we were expecting anything out of it – it was more of an update to see if anything has changed since her last MRI, which was three years ago.

Mira’s eating habits over the past few months have really gone downhill. She refuses to eat anything by spoon now. This is no longer a hunger strike – it is a flat out refusal to eat and she has perfected it. Mira has now learned to clench her teeth together and avoid getting ANY food in her. Up until this past week (which things have improved slightly) I would say that Sarah and I have successfully gotten her to eat about 2 jars of food total over the past month. She gets plenty of fluid, in fact that all she gets. She is on target for height and weight so we have little concern that she is getting the calories that she needs. We continue to supplement with protein powders mixed with milk, Pediasure, and watered down juice, which she never seems to get tired of.

Mira’s irritability was hitting an all-time high a few weeks ago. As I’m sure you have read in other posts, the number one issue we have with Mira is her irritability and how there are days where it is just relentless, and completely exhausts everyone in the house. Mira spends some part of her day, every single day, crying, screaming and/or fussing. If she has a bad day, she usually follows up with a bad night - which she has had several screaming/crying nights over the past few weeks. There are days that NOTHING will make her happy. It’s always a guessing game for us as to what is causing her to have such an irritable demeanor every single day, but there is no sense in trying to guess. We usually just chalk it up to something neurological.

We end up having to play junior neurologists during these periods of increased crying and monitor her seizures more closely. Typically, we see an increase in seizures and twitching, which always leads to the conversation of changing medications. We had that conversation a few weeks ago with her neurologist and we decided to put Mira on Banzel (Rufinimide) last week. So far, it has decreased her seizures significantly since she started it, which is fantastic. Her demeanor is improved slightly, but she is still having her daily screaming/crying fits, which are now limited to the late afternoon for some reason (probably because she refuses to eat all day). Her Banzel dosage gets increased tomorrow and we have a standing appointment with her neurologist on Friday to talk about how she is doing on it.

We did try reducing her Lyrica dosage weeks ago with disastrous results. In our efforts to curb her irritability, we talked to her neurologist about setting up a weaning schedule and slowly began to drop her dosage to see if there was a correlation between her crankiness and the Lyrica. Mira was great for a few days but immediately began having really intense seizures and even a few longer tonic-clonic seizures (mostly when waking up) that really took a toll on her. We had not seen intense seizures like those for at least a year or more. Needless to say, we put her back on her regular dosage with the understanding that the Lyrica is doing SOMETHING for her – maybe not controlling her seizures completely, but helping in some capacity. It’s all trial and error.

On the house front…………the addition is completely done on the outside and we have been plugging away and installing the mechanical, electrical, and plumbing systems over the past month or so, which has been fairly slow going. We plan on getting the rough-in inspected this week and have a drywall crew on board to start in two weeks. Being in the role(s) of owner, architect, and contractor is exhausting, yet has been extremely cost-effective for us to say the least. Yet we are growing tired of the enormous plastic tarp in our dining area that separates the existing house from the addition. We are slowly getting there. A million thanks to Aura and Ware for taking Sarah and the kids in for a week while I did all of the demolition – there was no way I could have accomplished that much work without your extreme generosity and hospitality!

While Eli is getting back into a groove with school, Jonah is finding his own groove by scooting everywhere around the house. His official new nickname is ‘Scooter’. He is pulling up on everything now and it’s just a matter of time before the chaos begins. That kid has such an infectious smile and is an unbelievably even-tempered go with the flow sort of kid. If we could only get him to quite waking up every 2 hours in the middle of the night! We are trying some new bedtime routines with him to see if that will help. Wish us luck!

Hope you don't mind if I go off on a tangent...............It’s interesting through this journey of Infantile Spasms that there are days that are so draining and exhausting that you just ache - emotionally, physically, spiritually, and everywhere in between. Then we read the daily updates from Reagan Leigh’s blog and the struggles that their family deals with every day make our lives seem pretty easy. Our family is at a different point in this journey in some ways, perhaps a little further down the road and we can remember those awful sleepless nights, the insomnia, the nighttime screaming and crying, the terrible eczema, the relentless multiple seizure days, and constant medication trials. The irony I suppose is that it may sound like we are still dealing with those same issues years later (and don’t get me wrong – we still are) but they seem so much less severe now than they did just 2 years ago. I don’t know whether we have just modified our coping strategies and learned to just 'live with it' or perhaps we have simply become numb to it all and are living in a constant state of high-functioning pseudo-PTSD . It’s only been 4 years for us. Who knows what the next 4 will bring. One thing is for sure is that our hearts go out to all of those families dealing with a seizure disorder, whatever stage or severity.