Box Fan Love

So after many, many months (actually years....) of Mira not sleeping through the night, we found something that has worked beautifully, as of late - a box fan! We have a 'white noise' machine that we have used for months, with no consistency of her sleeping through the night. She was getting up every 1-2 hours, every night. Well, after things started warming up here in KC, we turned on the attic fan (which makes a lot of noise during the night) and she slept great for a couple of nights when it was on. In order to replicate the noise when the AC is on and the windows are shut, we took out an old box fan, which has a very similar noise to the attic fan and she has slept through the night THREE NIGHTS IN A ROW!!!!

Could be the fan, could be something else - I don't care. Sleep is sleep.

On a side note, we are awaiting the results of some additional genetic testing done - as soon as we get it, I will post.

'Aaaaaeeeyyyyy, Sleep on it!'

Last night was pure hilarity for Mira for some reason. Every night, we have a ritual that involves a bath, pajamas, and laying her on the bed with 'The Bunz' before she goes into her crib. The Bunz (a pink bunny nicknamed after perhaps one of the best characters ever to hit 70's prime-time, 'The Fonz' - why I don't really know, these things just happen) has a string, that when pulled, produces a quiet lullaby that Mira tunes into, usually resulting in some smiling and brief visual tracking for her. She usually stops fidgeting immediately when she hears the song and will focus in on The Bunz to hear the song.

Last night, Mira was so excited, she ripped out a great extended belly-laugh and was really digging The Bunz, laughing loud and smiling at him, her arms and legs flying around. Rare form for Miss Mira - we haven't heard her laugh like that in a long time.

So, Bunz, thanks for the memories........sure wish we got it on tape!

Pureed Chinese - Who Knew?!

Mira had her first taste of Chinese food for dinner. We try and introduce new foods every so often (since she gets so tired of chicken + sweet potatoes - we can tell because she is turning orange) so tonight we pureed up everything we ordered. Sure tasted better than it looked.

We thought we were in the clear with the rash on her face, but it came back with a vengeance yesterday, so we have to go another round with her 'supercream' to knock it out for good. She also moved up to 10mg on the Lamictal on Wednesday (week 5) and so far so good.

I had heard through the I.S. grapevine that a new medication is in Phase II Clinical Trials (takes a long, long time for medications to reach this point) that is specifically designed for kids diagnosed with Infantile Spasms called Ganaxolone. The trial is currently recruiting patients, so this week I contacted the company and unfortunately, Mira does not qualify, due to her past AED medication history. If other parents are interested, the link is here: http://clinicaltrials.gov/ct/show/NCT00441896 Ganaxolone is manufactured by Marinus Pharmaceuticals which is here: http://www.marinuspharma.com.

Trolley Run and Video

The Trolley Run was a great success this year! The weather could not have been any nicer for the run, too. Last year it was overcast, drizzling, and cold. This year - sunny and 75 degrees! There were over 8500 runners this year, their biggest turnout ever. Next year will be the 20th anniversary for the Trolley Run, so expect something big……

Just a few picks from the run below. Thanks so much to everyone who ran (well, pushed strollers) with us this year and to everyone who donated to CCVI.



I also finished a video of Mira, which is posted below. It is also linked to the Yahoo site in the upper left hand corner. Thanks again!!!

Mira's Video

Trolley Run Tomorrow!

We are gearing up for the Trolley Run in the morning! Thanks so very much to everyone who donated to CCVI for Mira. We are so grateful for the overwhelming generosity, love, support, and prayers for Mira. For those of you joining us in the morning, see you bright and early! We will post pictures of the run as soon as we can.

Other Lab Results

Mira's mercury lab results came back today and they were normal. We can at least for now rule out any heavy metal toxicity. The other great news of the day is that the rash (non-Lamictal related) that has been so persistent on her face and chin has improved enormously over the past few days. We took her to the pediatrician late Friday afternoon and got a stronger prescription for an anti-inflammatory ointment that worked wonders. We had tried Lamisil and a few other remedies for months, but nothing had worked up until now.

I must get back to pumping the constant stream of water seeping into our basement from the brutal rain/hail storm he received here in KC late this afternoon. Nothing beats the constant hum of the wet/dry shop vac running for 4 hours.......

Great morning, Not so good afternoon

Mira has been having a decent week, fending off the germs and sickness that still seem to be hanging on from Winter - I have had a really sore throat and a cold for the past few days and fortunately, haven't passed it around as of yet.

Mira had one of the best mornings I have seen in a while - she was laughing this morning when she woke up, was having some good eye contact, ate a good breakfast, and I didn't see a single spasm, jerk, head drop, or any seizure activity. Around noon or 1:00pm. she became really irritable, didn't eat too great of a lunch, had three brief tonic seizures and a whole bunch of twitches and spasms all afternoon. It also took her almost two hours to finally fall asleep for bed. It was as though she did a 180 half-way through the day.

She is going to get her mercury re-draws tomorrow at CMH. I will post the results when we get them back.

Partial Lab Results

Mira had some labs drawn for heavy metal toxicity yesterday, which we had ordered in the system a few weeks ago. She was tested for mercury and lead. The lead came back today as 'negligible', but the mercury sample has to be redone, since they put the blood draw in the wrong container and it clotted, rendering it unusable.

It is so frustrating to have to take her back again in a few days to have them redo the labs. The hope is to take her back on Thursday morning. Fortunately, she hasn't had to go through this lab routine for several months. She HATES having blood drawn - who doesn't?!

I listed and emailed about a dozen questions for Mira's neurologist for her next appointment, which is in the middle of May. It seems like there is never enough time to get all of our questions answered (or even addressed) at every appointment, so I wanted to give him some advance warning with the questions a month ahead of time. I'm sure the list of questions will grow over the next month as well.

Truman's 1st Round Up

We all took a trip for Truman's birthday party in Illinois and it was a great time for everyone. Addy and Eli were able to run around all weekend, swapping sugar-overload stories and seeing how much noise an over sized plastic dump truck makes on ceramic tile floors. (Apologies to the Flora family for allowing Eli to wear through several coats of polyurethane on the hardwoods......I think we now have a running tab there for damaged goods - it's now around $3,000.) We also had a brief stopover in Edwardsville to see most of the clan at Tom + Nikki's house after Siena's baptism - great to see everyone, although it was way to short!

(Left: The night before the party: discussion about cake and cookies.)
(Middle: The day of the party: Truman with all the goods.)
(Right: 20 seconds later after Truman is out of the chair: three sugar vultures swarm the cake.)

After switching Mira's meds around from evening to morning, her sleeping hasn't changed too much, unfortunately. We are still hopeful. She did get some serious sleep on the trip home today though. Also, after not seeing any tonic-clonics for over a week, she has had three or four over the past few days, which is disappointing, but frankly, nothing out of the norm. She is back to her average of 1 or 2 a day. We are taking her in tomorrow morning to have some additional testing/labs at Children's Mercy that we have had scheduled.

The Sound of Silence........

We are in the process of switching Mira's Zonegran dosage to the morning, which means, she took it at lunch today and in the morning tomorrow, where she will stay. She has been having a really tough time winding down since she has been on it. Tonight, we haven't heard a peep out of her for over an hour! Hopefully, the trend will continue.

Just a couple of pictures from Easter Sunday. Mira has a new seat, which works well for her positioning, plus it has wheels! Eli very much enjoyed wearing Dad's boots around, stomping on Matchbox cars on occasion.

Teething, Lamictal, or What?

Mira is having a really rough time getting to sleep for the past several nights. She has been getting up every hour or 45 minutes at night, crying and fussing. Most of the time, she will go back down after she gets her binky, but consistently around 4:00am, she wants to get up and stay up, crying.

This afternoon and tonight she has been crying non-stop for the past several hours and right now, we are chalking it up to teething. Her gums are pretty red and it looks as though some upper chompers are wanting to break through. We are keeping a really close eye on her with the Lamictal and the rash potential too.

The good news is that we haven't seen any tonics or tonic-clonics since Tuesday! She is still having a dozen or so head drops daily, but no longer seizures for the past four days - knock on wood! I hope I am not jinxing it by saying it here.....................