February Comes to an End

This month has been a roller coaster it seems. Mira has definitely had some solid moments and good days, but has also had some rough ones along with it. Today was a fairly typical day to close out the month for her. She didn't have too many myoclonic seizures this morning and only a few visible ones this afternoon.

But she was cranky - she was exceptionally irritable from about 3:00-5:00pm. Unhappy Hour was right on time today and in full swing. Mira seemed to have an endless appetite today too, which was a little unusual. She didn't eat much for breakfast, but made up for it at lunch and the rest of the afternoon. I don't think she refused anything I gave her after breakfast. In fact, I couldn't prepare the food fast enough.

We are still moving forward with the creatine supplementation, as it seems to give Mira an energy boost. A little less slouching and lethargy, with some increase in her interest level in her toy and her surroundings. Hasn't done a thing for her seizures, but of course, nothing has.

I am currently corresponding with her neurologist in regards to GAMT (Guanidinoacetate Methyltransferase Deficiency) to find out what Mira has been tested for and if it seems reasonable to pursue anything further. I know that Mira had an MRI with spectroscopy when she was maybe 18 months old, which sometimes is done to reveal potential GAMT abnormalities. I hope to find out more information next week.

Can't Catch a Break

Have I mentioned how much I hate seizures? Watching Mira suffer through them day after day is awful to watch. After she had a couple of really positive days in a row (both at school and at home and despite having countless myoclonics and head drops throughout) Mira had a rough afternoon. She wasn't too cooperative at school, resisting and objecting to most of the activities throughout the day - it was obvious that something has been bothering her today.

When she arrived off of the bus, she was quiet and reserved. Eventually, I put her in her chair and she played for about 30 seconds and immediately erupted into a huge seizure. She was drained from it for almost an hour. Then she woke up, had a bottle to drink and then had another involved tonic-clonic seizure, exactly like the first one. Some days, she just can't catch a break.

She is resting this one off in her bed for the moment, but she is worn out from this heavy seizure activity this afternoon.

A Positive Turnaround

Mira had an interesting day - not really irritable or fussy at any point today. She started off the day as she has been for the past week or so, having a ton of myoclonics, but again, not crabby at all through them. She also had numerous myoclonics before dinner, a few of which almost evolved into a full blown tonic-clonic seizure.

The report back from school was that she had a pretty positive day - she was attentive at times, focusing on objects placed in front of her and even was compliant in her walkabout. She didn't necessarily take any purposeful steps, but was content while she was in it anyway.

This afternoon, she was vocalizing more than I have heard over the past few days. She was making some screeching noises and at times, was kicking up a storm in her bed. This activity went on for about 20 minutes and she took a brief nap before dinner. No complaints through her bath either, which is usually a tough time for her, especially in the evening.

Mira hasn't had much of an appetite the pat several mornings, but makes up for it at dinner time. This evening however, she would only drink one bottle and refused everything else.

Winter Needs to End

This is about the time of the year when I am officially done with winter. Being trapped inside (with the exception of school and work of course) and not being able to just spend some time outdoors, just wears on you after a while. I think we all just need 30 minutes of fresh air right now. We woke up to a balmy 8 degrees here in Kansas City this morning - about two weeks straight of the weather not peaking over 30 degrees. I know, I know - we could be living in New Hampshire.

Mira's past few days have been fairly consistent. Same amount of irritability, same amount of seizure activity, and the same pattern of tiredness and fatigue. She was very tired by the end of the day and she went to sleep a little earlier than usual. Overall, she seemed to be in a slightly better mood than yesterday, maybe because she was able to get a change of scenery at school.

It would be nice for her to get outside and enjoy the swing next door, but it needs to warm up about 40 degrees. March is right around the corner, right?

An Only Slightly Better Day

Mira had an only slightly better day than yesterday. The only difference with today was that she didn't have an enormous seizure to start off the day, which is great. Unfortunately, she was still in an irritable mood for most of the day. Again, she didn't last long in her chair this morning and just wanted to be back in bed.

Seizure wise, I didn't see hardly any activity, other than some subtle head drops this morning. Mira wasn't having any myoclonics and certainly not any bigger seizures all day, but she was definitely on an emotional roller coaster. She took a significant nap, starting right after lunch, but celebrated the Unhappy Hour at the usual time.

With Sarah and Eli out of town in Los Angeles, I decided to get Mira and Jonah out of the house late this afternoon, despite the cold. We headed up to Ikea to pick up the rest of Eli's new bed frame that I forgot to get last week. Mira loved the car ride, but wanted to keep moving all of the time, which is impossible, especially while battling the crowd in the store. Regardless, Mira managed to muster a few smiles while we were working our way around, but quickly tired when we were at a standstill at the checkout line.

 Hopefully, school tomorrow will break her fussy weekend funk that she has been in.

Polar Opposite Day

After Mira's spectacularly vocal day yesterday, unfortunately today was the complete opposite for her. She was up and in her chair for about 10 minutes and proceeded to have a massive seizure. This one lasted for about a minute and the aftershock of it lasted another 5 minutes or so. It really knocked her out afterward, for a solid hour. When she finally came around, she was very drowsy and lethargic, which is understandable. The seizure established the tone for the rest of the day.

The remainder of the morning wasn't much better. She became irritable before lunch and wasn't really interested in eating, playing, or sleeping. She just wanted to cry. She took a brief nap after lunch and woke up in a foul mood and was off and on fussy for the rest of the evening.

No vocalizing. Unhappy. Seizures. A completely polar opposite day for her. No diet changes, no medication changes, and nothing out of the ordinary today that would potentially spark a change for her. It just happens. If there is one thing that has been constant with Mira is that nothing is ever really constant. She can have an extremely positive day and 24 hours later turn around and have a terrible one.

Mira's Vocal Day

Mira had a really great day today. She was very vocal all day at school and was in a positive mood the entire day, minus one fussy moment right before dinner because she was hungry. After having a sizable dinner, she was ready to race around the house. Mira came a long way from this morning, when she was having a myoclonic seizure every 15 seconds, for a solid 20 minutes.

After racing around after dinner for a little bit, Mira continued to babble and vocalize. I tried to get a video of her doing this, but every time she stopped moving, she stopped talking. So, I did the 'walking-cam' method, just to give you a glimpse of what she sounded like. Keep in mind on most days, when Mira is making noise, she is usually fussing or crying, so hearing her vocalize like this, it is music to our ears.

Test Your Strength

Mira had a decent day today - woke up having a lot of myoclonics, but in a pleasant mood. She had an off and on day at school - did well in her walker, trying to take a few steps, while not complaining as she usually does. She was a little cranky late afternoon, but again, no seizures before and after dinner, which is always a positive. She tolerated a bath pretty well and ended up getting some time with her toy afterward, which made her happy.

Then she started doing this. I have never seen her do this type of routine repetitively and with such focus. She was quiet as can be while she was doing this almost stretching motion, over and over for about 20 minutes. She looks like she was doing a slow-motion 'Test Your Strength' carnival game with the giant hammer or perhaps she was practicing some new yoga moves. Either way, it was pretty interesting - the whole time she had a look of determination, yet calmness as she was doing it.

Solid Day, Despite the Seizures

Mira had a really good day at school today - she was attentive and happy, even tracking some objects and reaching out for other toys. Her teacher said she was focusing on things throughout the day. She had a few fussy spells, but overall had a very good day at school.

This morning, Mira was having a lot of myoclonics. She was in a great mood when she woke up, despite having so many head drops and seizures. She tired of her toy after a good stretch playing with it, but didn't get fussy at all before the bus arrived. Same thing this afternoon - not irritable, but too many myoclonics to count. She went to bed a little earlier than usual - she seemed to be pretty worn out from the seizures.

Up + Down

Mira had a pretty typical day today - some ups and downs, but overall, not terribly bad. She woke up this morning and had a few subtle head drops and was a little irritable, yet her mood changed once she was in her chair and was able to get some time with her toy. She actually did well this morning after she was dressed and had something to eat. She seemed excited to get on the bus and was anxious for school.

She did have some fussy spells at school, but also grasped a few objects, ones that normally don't even peak her interest in the slightest. She held onto one toy for about 15 seconds, which is a good length of time for her, Mira's stamina apparently wore down eventually at school and was fussy by the end of the day.

This afternoon she was a little off and on as well. She played some before dinner, but again became really tired after she had a couple bottles and wanted back in her bed. The positive thing is that I didn't see any seizures at all this evening - no myoclonics or head drops at all, for several hours before she went to bed.

Similar Day

Mira had a slightly less rocky day today, but still had some serious fussing spells. She did alright this morning for a bit, until she started having a ton of myoclonics right after breakfast. All of those head drops and attacks really got under her skin and she quickly tired of her toy. She rested for a little bit and was irritable during lunch. Mira may have been getting bored, as the kids didn't have school today and it was too cold and snowy to get outside. No big seizures today, which is great.

Mira has been doing the creatine for about a week now and we haven't really seen any improvement, other than her miraculous fuss-free day on Saturday. We will keep moving forward at this dosage and see where it takes us. For now, she seems to have more energy, so it may be helping in other ways.

Happy Day Streak Ends at 1 Day

After Mira's stellar day yesterday with zero irritability, I had my fingers crossed for a repeat performance. Mira decided to put an end to her stretch of calm demeanor by waking up on the wrong side of bed this morning, She was really cranky. Fussing and crying, I got her changed, dressed, and in her chair and from there, she lasted about 10 minutes before she was in full irritability mode, just crying her eyes out. She managed to finish a bottle through the tears, but obviously, something was really bothering her. She didn't have any tonic-clonics, only a few mild head drops - nothing like she has been experiencing the past few mornings, so I don't think it was seizure related.

So back to bed she went. She proceeded to take about a 30 minute nap, which I suppose isn't really a nap when you just woke up 30 minutes prior. Here was the interesting part. She woke up, started kicking her feet and vocalizing a little, then progressed into doing this for the next 20 minutes:

Sarah and I have seen her do these abdominal crunches before, but she was really getting into it today. She was laughing and giggling the whole time. Mira has abs of steel by now. It was some serious movement on her part, especially this early in the morning.

The rest of the day was similar - up and down, happy and sad, sleepy and excited. She didn't have any seizure activity the rest of the day, but alternated between naps, abdominal crunches, and being mildly fussy. She was all over the emotional spectrum today, having periods of belly laughing to tears streaming down her face she was crying so hard. This afternoon, Unhappy Hour was in full swing - she was really irritable from about 4:00-5:00pm and hated being in her bed, but was only slightly less fussy doing anything else. She eventually settled down around 5:30pm, but by then, she was exhausted.

A strange, roller coaster of a day for Miss Mira today.