Pictures

Mira has been having a great week - lots of smiling, giggling, and being in a great mood all around. The weather has been great, so we have been able to spend a lot of time at the park and have the windows open at night (with the attic fan on it seems to help Mira sleep better) which is a bonus. Mira has been able to make it to hippotherapy for three weeks in a row with out getting rained out! She has been doing really well on the horse, yet still being very particular about facing forward.



Mira's skin has cleared up dramatically since we started giving her acidophilus every day. I don't know what it is about probiotics, but if we stop giving it to her, the rash and irritation comes back the next day. You have to love the friendly bacteria. This rash on her face has been around for a long, long time and it worsens when she is rolling around on the floor.



Speaking of rolling, we have been spreading a quilt out on the floor for her every day and she loves having roll time. The trouble is, she is getting increasingly quick and will end up on the hardwood floor in no time. Sarah also ordered a swing online that we are going to start using, in an effort to get her excited about moving around. She is constantly moving and squirming and we want her to be able to be as active as possible out of her chair and not be on the floor so much. We occasionally put her in the swing at the park, but she can only lean forward and it's a lot of work for her to keep her head up and forward in those swings. This swing is in more of a reclined position so hopefully it will work better.

Other than that, not much else happening here. Still seeing some head drops and other quirks, but nothing major with Mira. Sarah is really exhausted these days, hitting the last month before the baby gets here!

Thumper

I spoke with Mira's neurologist (or at least his nurse) about raising Mira's dosage and we agreed to wait it out another week to see if Mira can get all of the congestion out of her system. It's been lingering around for a few weeks now and she still has loads of snot - I don't know of a delicate way to put it. We stocked up on Kleenex at Costco last week and have since gone through half of it!

Sarah and I have been seeing a lot of head drops lately, maybe up to a half dozen or so a day that we catch. I saw a couple this morning and one when Eli and I were out in the park with Mira. Despite this, Mira is still in a great mood, eating well, and drinking well - all of the things she should be doing.


Mira has taken on the name 'Thumper' since one of her favorite things to do these days is kick. If you hold her in your arms, with her facing away from you, she kicks and 'thumps' like a miniature tornado - arms and legs going everywhere. She is also constantly arching her back, which makes it nearly impossible to sit her on your lap, let alone try and hold her. She seems to be in constant squirm mode.

Changing her diaper has become a real challenge, since all she wants to do is throw her legs up in the air (usually at you) all while twisting, turning, squirming, and generally trying to kick her way out position. Don't get me wrong - it's fantastic to see her moving so much and exerting an incredible amount of energy, but it is a total 5 minute workout for Sarah or I just to get her changed.

This Week

Mira has been doing great this week. She was cranky during PT/OT, but did well. She is finally getting a lot of the phlegm out of her system and has turned a corner with her sleeping. Her sleep patterns are much, much better when she is feeling well. She slept through the night last night for the first time in weeks!

We are crossing our fingers that we don't get rained out for hippotherapy tomorrow, but we have been getting rain off and on today and more is forecast for tomorrow.

We moved forward with the aCGH (genetic micro-array) testing on Monday. Children's Mercy is sending it through a private genetic company for testing, so as it was with the other genetic screens, it will be back in about 6-8 weeks.

I had the pleasure of sitting through a 4 hour city planning commission meeting last night, for yet another cell tower proposal. Cingular threatened back in 2005 to put a cell tower about 50 feet from our house, in the middle of a park no less. After an exhausting fight, they were denied a special use permit and eventually the issue went away in 2006. Now, T-Mobile wants to put a massive 120' monopole about three blocks from us, which we could still see from our back yard. Again, the application was denied. Fortunately, we have really proactive neighbors (some of which are attorneys, conveniently) who are always willing to fight such proposals.

6 Months Seizure Free*

Yesterday officially marks Mira being seizure free for 6 months, but I say that with an asterisk. We have been seeing what we think are small seizures or at least something over the past few weeks. Mira has been battling this cold off and on for a while, so we are chalking it up to her being sick (which lowers one's seizure threshold) or considering the possibility that we need to increase her meds. I contacted her neurologist about it and we are taking a wait and see approach for now, at least until she gets over the cold and phlegm out of her system.

As I was getting her ready for bed tonight, she had a small head drop and her eyes fluttered very briefly. All of it lasts less than a second. I know it was something, because I have seen it thousands of times before - I was just hoping they would never return. Anyway, Sarah and I have noticed these small twitches/episodes every so often over the past week or so, but we aren't getting too worried at this point. If it happens, it will happen and we have a plan of attack.

Sarah is enjoying a very brief girls' weekend in Saint Louis with her sister and Auntie Tisha. Daddy gets to stay at home in KC and do laundry!

Hippotherapy - Finally!

After waiting for 6 months for an opening and getting rained out for 5 weeks in a row, Mira finally had her first full hippotherapy session this afternoon. She did wonderful, even grabbing onto the ring saddle on the horse a few times. Her therapist said that the grabbing was unprompted and she did it on her own. Mira definitely didn't care for riding backwards, crying every time they tried to turn her around. Her sessions were supposed to start in the first week in April, but were rained out every single Thursday until today. The only bad news about the hippo is that it's a 45 minute drive to Baldwin City from our house, but well worth the drive and it's only once a week.

I was able to take the day off (Sarah still isn't feeling well) and actually saw what Mira goes through on her heavier therapy days. This morning she had PT in house, then vision therapy in-house after lunch, then hippo in the late afternoon.

SMEI Results

I received confirmation this morning on Mira's SMEI/Dravet's testing and it came back normal. This genetic test was one of the more exhaustive (and expensive at $6,200) genetic tests out there. The lab was looking at a very specific deletion/mutation of a very specific gene called SCN1A. She has pretty much gone through all of the major testing - Angleman's, Rett's, and now Dravet's.

At this point, we are probably going to do one more additional screen, called an Oligo Array CGH (Cognitive Genomic Hybridization). Basically, Mira had some similar genetic screens back in 2005, soon after her seizures started, but it was at a very low resolution, meaning it only picked up major genetic organization. The technology for genetic screening has advanced so much over the past 2-3 years, that they can now perform a much more exhaustive scan at a much lower cost. This scan (neurology refers to it as a 'micro-array') is an extremely high resolution scan that is able to identify many more deletions/mutations in DNA than ever. Before this can happen, we need to clear it with insurance, since it costs about $4,000.

Mira has been battling a cold over the past few days, but is doing alright. Lots of snot. Need I say more? Sarah has been dealing with the same thing now for two weeks. I think she is exhausted from it. I am hoping that Spring is just around the corner........

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.

Pot Roast + Spring Cleaning

Mira has been doing very well over the past week or so, with the exception of yesterday when she basically cried off an on for 4 hours - most of the afternoon. Sarah and I jokingly chalked it up to daylight savings time - it must have thrown her whole 'chi' off. She was pretty irritable all day, since every time she wanted to doze off, it was time to go somewhere, so she never had a chance to decompress. Today was better for her, although she still had trouble getting to sleep.

On the flip side, we discovered that one of Mira's new found friends is pot roast. Sarah found an excellent recipe for a roast and creamy potatoes and Mira cannot seem to get enough of it. I think she would eat is for three meals a day if we let her. She will snub yogurt all day long, but put a spoonful of pureed roast in front of her and she snaps right out of it and chomps it down. Needless to say, looks like we will be cooking it more often!

As of March 2nd, Mira has been seizure free for 4 months solid! She periodically rolls her eyes upwards, sometimes with a 'fluttering' motion, but it doesn't appear to be seizure related. It looks like it is more self-stimulating than anything. She is constantly squirming, so trying to hold her is no longer an option - her movements (back-arching and throwing herself backwards) make it increasingly difficult to carry her and get her in and out of the car sometimes. In her crib, she is often thrashing from side to side, flinging her legs up in the air, and is still putting her hands in her mouth, all the time. Most of this behavior surfaced after she became seizure free, so to us, it's a sign that she is making some progress.

We are doing some spring cleaning around the house, donating clothes and books, shredding old papers and getting the house in order to get on the market in about 2 weeks. In the meantime, we are narrowing our house search to a particular area. This after driving neighborhoods and checking out schools over the past month.

Quiet Times

Not much has been happening over the past few weeks, thus the break in posts. Mira is still seizure free, going on almost 4 months! We did have Mira's neurology appointment on Monday, which lasted about 2 1/2 hours. Her final results on the Rett's testing, for the typical MECP2 type, came back negative. After much discussion, we decided to do some further genetic testing, for Dravet's Syndrome. The decision was based on Mira's poor reaction to Lamictal and Diamox last year, both of which act in a specific way in the body, through sodium channels. Her adverse reaction to particular medications is sometimes a clue.

Dravet's, also referred to SMEI (Severe Myoclonic Epilepsy in Infancy) is usually attributed to a specific gene, referred to as SCN1A (and also SCN2A). Mira will be tested for this, but as with all of the other genetic scenarios that she has been tested for, it is unlikely that she has it.

Weekend Events

Aura, Addy, + Truman came into town for Eli's 'Batman Bowling Party Extravagganza Weekend'. (Eli turns 5 on Wednesday!) The festivities continued into Sunday when I took the boys to Monster Jam at the recently completed Sprint Center. Having never attended any sort of racing, car, truck, or motorcycle show, it was an eye-opening (and ear-ringing) experience to say the least. Eli and Addy were reved up for most of the show, but after 90 minutes of trucks, dirt, and noise, they were both pretty much spent. I'm not sure how anyone could possibly fall asleep during Monster Jam, but Addy managed to.

All things considered, it has been a quiet week for Mira. I plan on talking to neurology toward the end of the week so that we can make sure we have the remaining Rett's results for her appointment at the end of the month.

Three Months Seizure Free

Saturday marked three full months of Mira being seizure free! She continues to do well, although her eating is still not up to par and hasn't been for quite some time. She tends to eat in waves, scarfing down yogurt and eating full meals for a few days, then won't eat a bite for a the next two days. We can't quite figure it out why she does this, but she is still getting plenty of fluids every day. Despite her mealtime issues, she is doing very well these days and continues to be very vocal and animated.

It was in the mid-60's this afternoon so everyone (well, almost everyone) was able to get out and enjoy the weather here. Sarah took the kids to the park and Eli was able to burn off some energy. Poor daddy was stuck inside all day and had to sit through boring meetings and talk to other nerd architects about exhibition hall rigging capacities imposed on structural mainframes.

A Much Better Night (and Monday)

Mira rebounded Saturday night and slept from 7:00pm to 7:00am, only getting up briefly, once. I think she was making up for lost sleep. I think she might also be on the rebound with her eating habits as well. Up until this morning at therapy, she still wasn't eating much. She managed to down an entire yogurt with her feeding therapist, which is probably more than she has consumed in the last 4 days, combined.

We also managed to get an appointment (most likely due to a cancellation) with CMH neurology, toward the end of February, so we are on the books for Mira's next appointment.