Friday, May 23, 2008


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!

Tuesday, May 13, 2008


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.

Wednesday, May 7, 2008

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.

Saturday, May 3, 2008

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!

Thursday, May 1, 2008

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.