Sunday, April 27, 2008

A Long Hiatus

Sorry it has been such a long time since my last post. We have been extremely busy over the past month, so without going into too much detail, I will give you the Cliff notes of what has happened with the house:

............Started searching for a new house. Looked at many, many houses and drove many, many neighborhoods. Fixed supposed cracked foundation to stop leaky basement to prepare our house. Put our the house on the market. Had almost 20 showing in 10 days with no offers on our house. Could not find a house worth putting an offer on in the neighborhoods we liked. Took our house off the market after 10 days and decided not to move. Basement flooded 3 times over the past two weeks since house has been off market. Still have a leaky house. Still have packed boxes in friend's garage and in storage...........

Sarah and I are pretty exhausted from this whole experience, but it has been a very eye-opening one at the same time. We are quite content with staying put and with the market as soft as it is currently, we felt like it was the best decision for us right now. We will deal with the bedroom situation as it comes. We figure we might be singing a different tune in 6 months (the baby is due in 8 weeks!) and might consider making another go at moving. But for now, it's nice not to have so many irons in the fire and it's just one less thing to worry about.

In addition to the house, the winter sickness and colds have been working their way around the house for seemingly forever. Sarah has been battling a cold and some congestion for over a week and it doesn't seem to be going away. It's getting passed around, with Mira and myself getting touches of it over the weekend. The weather isn't helping either - 65 one day then 30 the next.

As for Mira, she has been doing well too. I am happy to report that she is still seizure free, although she has been having what I swear I thought were head drops at one point. They are very subtle and you wouldn't know she was doing it, unless you have seen it as many times as Sarah and I have. She had a few (at least they looked like really quick ones - not completely sure) on Wednesday and then one today. I emailed her neuro and asked and his recommendation was just to keep a close eye on her and we could always up her Lyrica dosage. She has been on it for nearly 6 months and has not had to increase yet, so it isn't unreasonable to think that based on her growth and weight, that she might need to increase the dosage.

Her sleeping has not been so great as of late. She has been getting up at all hours of the night, usually crying out. Most of the time, she settles down after a few minutes, but other times she really gets worked up. It has also been difficult for her to 'decompress' at the end of the day and she will fuss in her crib for an hour off and on before she finally gets to sleep. None of this is out of the ordinary for her - she has had erratic sleep patterns her whole life. It comes and goes.

We don't have anything lined up on the books with neurology, since nothing has changed much over the past few months. We will probably get Mira in for a visit sometime over the summer, unless something changes drastically before then. We haven't heard anything back on the Dravet's testing, which was ordered at the end February. Apparently, it's not uncommon for the results to take 2 months or more. We will keep waiting.

I did manage to upload several videos (see 'Other Mira videos' link on the right side of the page) of Mira doing some funny things. She really gets wound up, often for no apparent reason - one episode I was able to capture on tape back in January. We also found that she gets particularly excited over the food processor and the dust buster. Not sure what it is about certain appliances and noises, but it cracks her up.

Hope everyone is doing well and apologies for not getting our ducks in a row to do the Trolley Run this year. There was so much on our plate over the past few weeks that we just couldn't get organized to do it. The actual run was today.


Keith said...

I founbd your site after looking for a blogspot search on neurology. Your posts arfe wonderful. Thank you for sharingjlhuwy

Reagan Leigh said...

I've had a link to Mira's blog on our blog for a while, but I'm just now going back in her history and reading her story from the beginning. Mira and my daughter Reagan have many similarities. Reagan is only 1yo but has already tried many of the seizure medications, the only one of which has made any difference whatsoever was Zonegran (similar to Mira), which she was on the first 3 months after her diagnosis. She continued having ~20-30 individual spasms a day so we decided to take her off of it and since then we've been through many medications (including ACTH) and none have worked. She's currently having around 200-300 seizures a day. She's trying Felbatol right now (which seems to be making her have MORE seizures...although the nurses/doctors seem to think that's impossible) and she's set to start the ketogenic diet in May. I looked on your site for an email address but didn't see it. I would love to talk with you...sorry for the long post!! Take care!