Monday, April 27, 2009


How time gets away from us all – I have been meaning to update Mira’s blog for the past month and just now am getting around to it. I swore April just started a few days ago and already we are heading into May.

I first wanted to give an update on what has been happening in Mira’s world over the past month and a half. It’s hard to explain, but most of days, it seems the more things change, the more they stay the same. Mira continues to have seizures every day, having only one day since my last post where Sarah and I didn’t see a single one. Yet, the seizures that she is having are more intense and are lasting longer. She is getting back in to this cycle of having intense seizures again. It feels as though it’s 2007 all over again – same intense seizures that slowly and steadily get worse until we have to jump on the medication merry-go-round in hopes of giving her relief.

We started the discussion with her neurologist about Rufinamide, which is pretty new to the market, but the clinic only has 2 kids on it currently and don’t seem too eager to put anyone else on it. I have all but given up on Lyrica at this point, despite Mira being seizure free for a period of time last year on it. It certainly isn’t doing much now but possibly adding to her irritability.

It is really difficult to explain to people what it is like to live with Mira most days, unless you spend some time with us here in the house. One of the things that we battle with most is the crying and irritability with Mira. She spends a part of her day, every single day, crying and screaming. Some days it is not difficult to distract her with bottles of milk, providing a change of scenery, taking her for a walk, or something to break the cycle of boredom, hunger, or whatever it is you think is ailing her at the moment. Other days, like today, she is just crying, fussy, and inconsolable and there is nothing you can do to snap her out of it. It’s very frustrating and sad to watch her. The best way to describe it is to imaging living with a 3 month old baby, all the time. It makes it tough when you have two other kids to take care of on top of it.

I have had several neurologists in the past tell me that the seizures don’t hurt her, with which I have to disagree. I think about 90 percent of the time, there is something neurological (and/or medications that exacerbate her issues) that causes her to be irritable and that the seizures themselves are actually causing her pain or at least discomfort. For instance, I was 10 minutes into our stroller ride with Mira and Jonah this afternoon (an attempt to improve her mood after a particularly cranky morning) and she had a very intense seizure. She was pretty quiet afterwards for about 10 or 15 minutes, then became extremely fussy and by the time we got home, she was crying so hard I thought she was going to vomit all over me. It took her another 45 minutes to stop crying.

It’s a vicious cycle of seizures, medications, and trying to figure out what is ailing her that it is beyond exhausting for Sarah and I sometimes. We are now debating whether to keep her on the Lyrica, take her off meds altogether or just try something else, which as history has proven to us repeatedly, may be more of a hindrance than helpful to the situation.

Despite all of the constant daily crying drama, things continue to move along slowly with her therapies. We were able to get her 6 weeks of hippotherapy, which were supposed to start last week, but as luck would have it, the therapist was sick. Mira is scheduled to go tomorrow for a session, but it is calling for thundershowers, which usually warrants a cancellation. We haven’t made any changes to any of her other therapies and she is making some very small gains (in her gross motor skills especially) through all of it over the past year.

We did get Mira’s final CDKL5 labs back about a month ago, which were normal. No surprises there. While this doesn’t ‘officially’ rule out a Rett Syndrome diagnosis, it does ensure that she absolutely does not have a typical or atypical mutation or deletion of almost all of the known genetic abnormalities. There is one final genetic screen that has surfaced over the past year that is known to cause Rett-like symptoms, called the FOXG1 mutation, but we don’t really have any intention of testing her for it, unless her neurologist advises it.

Mira is still enjoying the bed and seems very confident in it. We often walk in on her lunging into the sides of the mesh – don’t know whether she is testing the durability or trying to rip a hole in it. Needless to say, both Sarah and I are so happy to have it. It gives me some piece of mind that she is safe at night in it and won’t injure herself. Some of her other equipment isn’t holding up so well. I had to repair the footrest on her Kid Cart (again). She tends to kick it so hard and so often that she knocks the entire assembly out of its socket and it needs to be reassembled and bolted together again. This is the third time she has done this and the footrest is starting to show its frustration with Mira’s feet. It’s starting to rebel by requiring more bolts to hold it together.

Although it is nearly May and school is drawing to a close in another month, Sarah and I were glad to get some vacation time in the last month and managed to take a couple trips. Our first was to Illinois to visit Auntie Aura and Uncle Ware for a week over spring break. We took all of the kids and even successfully managed a day trip to Chicago and visited the Shedd Aquarium. The following weekend, Sarah and I took the Eli and Jonah to San Diego and spent some quality time with family and at Legoland. We also visited the USS Midway and a quick trip to the Pacific Ocean. I think it was a much needed excursion for Eli to have a couple of days where it was just about him. We get so preoccupied with taking care of Mira and Jonah that Eli often has to patiently (or not so) wait his turn. It is a tough balance for all of us sometimes. It was the first trip we have taken without Mira. It was sad not to have her with us, but at the same time, it would have been a rough trip for her all around, from airplane rides to car rides to sleeping somewhere new for a few days. She was well cared for back at home with friends and family.

Outside of our trips back in March and early April, things have been pretty quiet. Jonah’s baptism was last Sunday, which went off almost without a hitch - only one baptismal candle burning incident during the entire ceremony and one KidCart malfunction (yes, the footrest issue). Jonah didn’t mind the water too much, but the oil sent him over the edge – I think he was mad because it messed up his hair. He spent all morning on it.

Nothing has been happening on the renovation. We are still waiting on the loan. Now that it’s warming up outside, contractors (including my foundation sub) are getting busy and I am finding it tough to get on their schedules. Oh well, we are optimistic that eventually we will start building – might be 2010 at this point.


JSmith5780 said...

I've been wondering about you all. I'm sorry to hear that Mira is having no relief. Hopefully the neuro wll have some new ideas.

Loved all the pictures!

Reagan Leigh said...

I so feel your pain! It's crazy how similar Mira and Reagan are! The irritability factor is enough to make you lose your mind sometimes. Unfortunately, right now we've got the added stress of no sleep! Ugh. I just wish you could find something to stop her seizures! It's just so frustrating! Hang in there and please don't give up hope! Something is going to work for her...I just know it!

Lisa said...

Just wanted to leave a note to let you know that we have been fighting seizures with our daughter, Ainsley, since she was 4 weeks old. We, too, have not had any real relief from them except for 1 month seizure free when she was 7 months old... We definitely understand your frustration! Ainsley will be 4 in June and also has a clinical diagnosis of Rett Syndrome (but no genetic marker) as well as a diagnosis of Complex I OXPHOS mitochondrial disease from a fresh muscle biopsy. Please feel free to email me or check out her page at . Mira is adorable, however, and we love her new bed! Sending you strength, hugs and prayers..
Lisa, Matt & Ainsley Higgins
Duluth, GA

Lisa said...

Mira and Kali sound SO much alike! I always read your blog and think- that is exactly what Kali does!!

I am always thinking of Mira and your family!

We to, take lots of stroller walks to distract cranky Kali :(

labonte4 said...

What a truly beautiful family!! I agree with the seizure/pain issue. Ava spent the first 2 years of her life crying, irritable and screaming. We've just now gotten some relief in that department. I hope this year can show Mira some relief from everything.

Tina said...

This is SO familiar for me too. Noelle has had awesome luck and not many seizures with the ketogenic diet, but still has those fussy days. Whiny and whimpering all day, for hours. She pulls her hair out on one side and you can see seizure stuff in her eyes. Our neuro says it doesn't seem epileptic, but I know that seizures are a part of the picture. Another thing is UTI's. Noelle has had some with no visible symptoms, and we had her on a daily antibiotic for 6 months once, she was so much more alert and happy....we're trying it again now and so far she's been more energetic. HANG IN THERE. No one who hasn't lived with it could imagine that daily balancing act between care giving, and the other kids needs. It is hard...and the guilt when you do leave them. And the other kids having to have patience. I KNOW. Sometimes it seems like everyone in the house just has to be patient. There is just nothing worse than your child in pain and you can't fix it. very hard on nerves and stress levels. Remember to take time for'll make your parenting more effective. Thanks for sharing this.