Sunday, August 31, 2008

Mira Watched Too Many Olympic Events

Mira has been moving around so much lately, that I think all of the Olympics exposure over the past few weeks has led to her attempting some of the events. As in the video in the last post, Mira has been getting up into a sitting position (for 10 seconds at a time on rare occasions) whenever we put her on the floor. This has led to her crossing her legs and quickly pushing forward, which ends up in a face plant! It's looks really painful, but it is hard to catch her in time to lessen the impact. Mira thinks it's funny most of the time. She is rolling around on a blanket, which is over a carpet, so it's not as though she is hitting the hardwoods directly, but it looks bad nonetheless. I caught it once on tape - all of her movements look like some choreographed floor exercise routine I saw in the Olympics, minus the whole landing on your face part.

We started Mira on a small dosage of Depakote last week and it doesn't seem to be agreeing with her. She has been much more irritable since starting it, waking up screaming in the middle of the night 3 out of the last 4 nights. I'm not sure what affect it has on appetite, but I'm sure it's not good, Her eating is still hit or miss, which doesn't help the nighttime screaming when you are hungry on top of it. Then again, this isn't really new behavior for her, she was pretty much the same before starting the additional meds. Only now, she seems more irritable, more often. We are going to give the Depakote a few weeks (our neuro says at least 6 weeks) and hopefully it will help with her seizures.

We are still waiting on the cable for her KidCart, which was supposed to be in on Friday. We also have someone from the company that we ordered the chair through to come out and give us an assessment on a new bed for her. Mira has been periodically kicking out the rails on her crib (which she is just too big for anyway) and is constantly hitting her head against the sides when she is moving around. We looked into this bed and are going to see if we can work something out with insurance, if not, we have several alternate plans.

Friday, August 22, 2008

Kidcart Debacle

We have managed to get Mira to get at least 3 or 4 meals over the past few days, which is better than nothing. She is still only eating less than half of the time you offer her something. The nighttime screaming has subsided a little too - she only woke up screaming once in the past three days, which happened to be last night.

The biggest hurdle we have had of late is Mira's Kidcart debacle. Her Kidcart is basically a three part system - a chair (which is the actual seat she sits in) a high-low base (for getting her around the house) and a stroller base, for getting her around outside. There is an intricate cable system that broke on the chair that enables the seat to lock into the high-low base, as well as her stroller base. It is critical that have the chair working so that we can just get her around without having to carry her everywhere. The cable started to unravel and fall apart several weeks ago. We were proactive, calling the company that services her chair and placed the order for a new cable. As it turns out, the cable broke completely yesterday morning, with the chair locked into her high-low base. Good and bad. Good news is that it locked in the upright position. Bad news is that you can't get her around in the high-low base, other than in the house.

So we called the company to find out the status on the cable and as luck would have it, they hadn't even ordered it yet, citing it was pending insurance approval. Sarah explained our dilemma so they are going to expedite our order. By 'expediting' they mean you still won't get it until sometime next week. Even if we were somehow able to get a hold of a cable, we still need someone to install it. Basically we are stuck trying to get Mira around in a stroller (which offer no support) and lugging her locked chair/high-low base combo, which is clumsy and awkward to get in and out of the car, not to mention weighs 40 lbs.

Sunday, August 17, 2008

The Good, The Bad, and the Screaming

It's always good to start off on a positive note, so I wanted to tell everyone how well Mira has been doing at sitting up. Sarah and I have seen her up for 10-15 seconds at a stretch sometimes! She has learned to get into a sitting position in a couple of different ways. The first is the 'super abdominal crunch', where she will thrust herself upward leaning forward (as if doing a sit up) which is a very effective method for her - Mira now boasts some serious ab muscles from doing this. Her second way is to push up off of her side with her arms, although doesn't seem to work as well for her. She ends up spinning around and gets her arms trapped underneath her. She seems to be working on a third method, which I caught her doing in her crib last week. While laying on her stomach, she will tuck her knees inward toward her chest, then cross her legs and lean backward. I was astonished when I saw her do it, partly because it looked so painful, but mainly because I have never seen her bring her legs together (in unison so to speak) in a purposeful manner. I did manage to capture some of her sitting gymnastics on video:

And now for the bad. Mira pretty much stopped eating 4 days ago. Her hunger strikes have increased in frequency and intensity over the past few months, but this latest one is a whopper. Sarah and I cannot get her to eat anything these days. She will only drink from a bottle. I don't know whether it's regression, stubbornness or my poor cooking, but she flat out will not eat anything. It is incredibly frustrating. We have tried every tactic outside of force-feeding, but have been unsuccessful for 4 days now. We usually manage to get a few bites (at best) and then the snubbing begins. We just wait another meal or another day until she decides she wants a solid meal.

The third and final issues these days is the screaming. I have no doubt that Mira's eating woes go hand in hand with her sleeping problems. Over the past few nights, she has woken up screaming and inconsolable at various times throughout the night. The first 2 nights were at 2am, then 3-4am the following night, then for several hours last night just before midnight. She has had a really difficult time decompressing before she goes to bed which is not uncommon, but lately has been waking up screaming her lungs for out until she is exhausted. We haven't seen her do this consistently (as in multiple nights in a row) in quite some time. We didn't hear a peep out of her after midnight last night, so a 6 hour stretch scream-free is a good sign of things to come we hope.

On a side note - Eli is really excited about starting kindergarten tomorrow. I can't believe he is already starting school! Jonah is also doing very well - Sarah and I got some great 'cooing' and smiles out of him last night - too bad it was at 1:30am!

Thursday, August 7, 2008


We have been doing the GABA for a week now and haven't noticed any difference, but nothing bad either. Some irritability - same amount of seizures. Mira seems to have a lot of energy these days and gotten back on the food train, well at least for the past two days. I think she makes up for lost time by inhaling some of her meals. For dinner, I couldn't feed her fast enough. She ate a sweet potato in about 2 minutes flat, then took 2 bottles of milk and without batting an eye. We have just been pouring the GABA capsules in her milk and she is taking them fine. They basically have no flavor.We have also gotten her back on her protein powder shakes. Since her calorie and protein intake can vary greatly (when she won't eat) we have been doing the shake mixture in the morning.

Mira has been sitting up a lot this week, while not uncommon, she has been doing it for longer stretches. Sarah told me that yesterday Mira propped her self up and stayed up for about 15 seconds! I took some video of her doing some good 5 second stretches, which is great. She is starting to gain some balance when she swings upward and almost gets into a sitting position. The coordination is there - she just needs to use those arms as props!