'What's the Prommo?!'

When Eli was about 2 years old, he couldn't quite get the word 'problem' out, so when he was frustrated or concerned about something, he posed the question 'what's the problem', which loosely translated into 'what's the prommo?!' It's just stuck with me over the years and I now find myself staring at Mira every day when she is screaming her head off asking 'what IS the prommo?!' It's so difficult to understand what exactly is going on in Mira's world and becomes so frustrating when you feel that there is nothing you can do for her. It's really a helpless feeling as a parent and you can't help but feel like a failure at times. Sarah and I find ourselves every day wondering what she is feeling.......is she tired, is she hungry, is she bored, does her stomach hurt, is it something neurological, is it the medication(s), or all of the above?!

Mira spends some part of her day, every day, being irritable. Some days it's a half hour; other days it's sun up to sun down. Other days, nothing makes or keeps her happy and we feel like we are always two steps behind whatever she wants or needs. Sarah and I call it LGF (Low Grade Fuss) where she will just whine, whimper, or all out cry and there is seemingly nothing we can do about it.

On a good note, my Mom came in from Saint Louis for the weekend and was able to see Mira's gymnastics moves, live in action. Mira's mobility increases a little every week. She is still popping right off of the floor into a sitting position. She will do it over and over until she is exhausted. It's great exercise for her and she seems pretty excited when she is in an upward position. Who knows - maybe she can solidify a spot on the 2016 Olympic squad soon.

All that aside, she seems to be adjusting to the Keppra fine - no increased irritability for the past few days, then again, no decrease in seizure activity. I thought I didn't see anything for the first two days, then yesterday I swore I saw a half dozen before noon. We will just keep watching and waiting.

We did add some vitamins back into her diet, since going back on additional medications. We added B12 and folic acid, added to the B6 and omega 3 she has been taking for some time.

Keppra

We started Mira on a low dose of Keppra on Saturday and so far so good. She's been off and on irritable today, but I chalk it up to her getting up Saturday morning at 4:00am, crying and fussing for 2 1/2 hours. She slept a lot yesterday and today we were running around in the car all day, so she wasn't able to get her usual naps in. Haven't heard much out of her this evening - I suspect she was pretty exhausted overall.

We did get a double stroller today, which is something Sarah desperately needed, just to get around with errands and such. Lugging around Jonah and Mira (even while Eli is in school) is a challenge to say the least. The double holds up to 50 lbs. per seat, so I think we have some breathing room with Mira. It also has a decent five point harness in it to keep Mira contained and upright. We already have a Jeep double stroller, but it's more of an umbrella type and isn't very accommodating for Mira or Jonah, at this point. Eli outgrew it a while ago too.

Tomorrow, all three kids gets caught up on their vaccinations, including Mira. Wish us luck - it's going to be fun!

AFOs

Mira's appointment to get fitted for her AFOs went really well today. Basically, they did a fiberglass wrap on both of her legs (one at a time of course) which is similar to getting fitted for a cast. The hardest part was actually holding Mira's legs in place while they did the wrapping and cutting. It took several minutes for the cast to firm up and Mira did some serious squirming throughout the entire process. Either she is getting really strong or I am just weak, but it took a couple pairs of hands just to keep her from forcing her way out of the mold with each leg. The therapist then cut the wraps, which will be used to form and custom fit her actual AFOs. We even got to select colors for the brace, velcro straps, and accent banding. It's just a given that they will be pink and lavender, with floral banding. Isn't everything Mira wears pink and lavender?!

The AFOs should be ready in about 3-4 weeks and we have an appointment scheduled in mid-October to pick them up and try them out. We will see if insurance is going to cover them - so far we have been extremely fortunate in that they have covered just about everything.

Quiet

All has calmed down since taking Mira off of the Depakote. She really turned around after only a few days of being Depakote-free, despite feeling under the weather. Mira immediately started eating better too once she was off it - we have been getting her back on the morning oatmeal train again.

We are still seeing quite a few head drops from her everyday, which has been going on for months now. No better, no worse - they just happen. Now that she has been sitting up (and staying up for 20-30 seconds stretches) I am always nervous about her having a seizure while sitting up an falling flat on her face. The few times I have seen it, she just sort of bends forward, but still stays up. They don't appear to be strong enough to topple her over.

Mira's neuro recommended starting her on a low dose of Keppra to help with the head drops, but we are holding off until she gets over the congestion she has been battling over the past few days. After her latest bout with Depakote, we aren't too anxious to spin the medication wheel again, but will try if we think it will help.

On Friday, Mira is going to get fitted for some orthotics, also referred to as AFO's - Ankle and Foot Orthotics. Basically what AFOs are leg braces that will help Mira to maintain alignment of the bones in her feet and ankles. As she becomes more mobile, the AFOs will also help keep her from rolling her ankles and provide needed stability, should she try to stand. She won't be wearing them all the time, but will easing into them gradually for a few hours a day. We should learn more on Friday on the AFOs.

Goodbye Depakote, It's Been Nice (Not Really)

I couldn't come up with anything better than to reference an old Supertramp song. Obscure, yes.

Less than 2 weeks after starting Depakote, we took Mira off it. We noticed a drastic change in her mood soon after starting it. She became increasingly irritable all of last week, which escalated to her screaming Friday night and turning purple she was getting so upset. She had a lot of trouble decompressing at night and did a lot of screaming all week. It did nothing for her seizures so we decided Friday was her last day on it. Today she is pretty much back to her old self.

We had a similar episode when she tried Felbatol in early 2007, only we took her off of that after only a few days. That was really awful for her. We haven't seen such a poor reaction to a medication since Felbatol, thankfully, but Depakote was a good contender for worst meds.

We put a call in to neurology to see what her neuro suggests. Frankly, there isn't much left that she hasn't tried, other than Neurontin (Gabapentin), Zarontin (Ethosuximide), Gabatril (Tiagabine) and Inovelon (Rufinamide), which isn't available in the U.S. Since Lyrica is about the only thing that has worked for her, it would be nice to find a medication that has a similar mechanism of action.

Back on Wheels!

After much delay, we finally got Mira's Kidcart up and running again. Pushing her around in a stroller over the past few weeks has been a hassle, but we survived. The seating company rep came over this afternoon to install the cable and to give an assessment on Mira's bed situation, so we were able to get everything accomplished in one day.

Mira's crabbiness has subsided somehwat over the past few days. Perhaps it is her system getting acclimated to the Depakote and/or the fact that she is eating a little better these days.

I thought I would post some video of Mira sitting up again - this one is pretty amazing. After venting some frustration, she managed to maintain some balance once she was up for about 20 seconds! I thought she was going to a faceplant at first, but she kept right on bouncing around. Go Mira!