Mira's New Chair + Equipment

Mira's new chair arrived late last week! Mira had grown so much over the past 18 months that she quickly outgrew her old Zippie Iris. Her new chair is a larger scale Zippie Iris, with additional side supports (to hopefully keep her from scooting and slouching in her chair) and better lateral supports. The new larger head rest will also help Mira with head and neck support. We also ordered her a new bath chair and a new car seat, both of which she had  grown too big for. All three pieces are working great - thank you Variety KC!!!

On a side note, Mira is now completely off of clorazepate, a medication she had been on for several years. We have not noticed any major side affects and are happy to have her off of it. On the direction of her neurologist, we had originally added it to her daily medications to help with some severe irritability. She is now on a dosage of clobazam, which is much less sedating. Mira seems to be more engaged and active now.

Mira's New Chair is Arriving Soon

Mira's new chair is on it's way and should be here in a few weeks! I cannot be more excited for two main reasons. Number one, the process of getting her new chair went so smoothly this time, that I am still in disbelief. The staff and communication with the seating company has been a quantum leap better than what we had to deal with in obtaining her current Zippie. So, kudos to the seating company for being proactive. Secondly, Variety of Greater Kansas City is paying for Mira's new wheelchair! I cannot thank Variety enough for this incredible gift in helping pay for her chair. This will make an enormous difference for our family and for Mira, most of all. THANK YOU VARIETY!!!!!!!

The Slow Wean

We have been slowly weaning Mira off of clorazepate (Tranxene) for a few weeks now and we are not quite half way through it. Benzodiazepines are very sedating and will not only cause the body to build up a tolerance to these types of medication, but weaning can cause significant and severe withdrawal symptoms if someone has been on it for a long time, thus the very slow wean for Mira.

On the direction of her neurologist, we are dropping her a quarter tab every week, which will (fingers crossed) get her completely rid of it in 6 weeks. This comes after dropping her a full tab over the past 6 weeks. We have been seeing an increase in larger tonic-clonic seizures and a ton of twitching/myoclonic type seizures the day after a decrease in her dosage. For instance, we dropped her dosage last night and this morning she had two big seizures almost back to back, then several hours of twitching, which was making her pretty irritable. It seemed to wear off over the day.

We hope to get her off of this medication altogether, but we are taking it slow. Mira added clorazepate to her seizure medication regiment about 2 1/2 years ago, only because we were dealing with some serious irritability with her. So far, we haven't seen too much change in her demeanor. Her seizure activity is questionable right now.

On a high note, we received a letter back from Mira's insurance on her new chair and it was approved! Phase one complete. Now, if we can only get the seating company moving forward, we might be in a good position to have her chair in 4-6 weeks.

The Cliff Notes Version Update

It’s been such a long time………… I can’t possibly go into every single detail since the date of my last post, which has been nearly 18 months, but I will try to give you the Cliff Notes version.

Let me first start off by telling you how much Mira has grown. Mira turned seven back in June and she now weighs 80 lbs. Still in the 95^th percentile for height and weight, she is getting much more difficult to transfer. Currently, we transfer her from her chair into the van, then lift her chair into the back of the van. This process is exhausting and really bad on our backs. We are in the process of getting her a new chair (see previous posts about the ordeal we endured getting her Zippie Iris and insert frustration rant here) as she continues to grow, but it may be awhile. A newer chair really means a heavier chair – it will be another Zippie-type chair, one that tilts, only with a bigger frame.

Mira is a scoocher these days. She is constantly slouching down in her chair. We are getting some special attachments for her new chair that will hopefully keep her from pushing down in her seat, but for now, it is a battle of keeping her lap belt tight. When she slouches, she swings her legs out of the chair, which nearly pulls her sideways out of her seat. We find ourselves constantly having to reposition her to keep her from wiggling out. The chair will also have additional head supports on the sides, which will hopefully keep her from tilting her head as well. In addition to slouching, Mira is tilting her head (almost exclusively to the left side) and pushing her neck between the seat backing and the underside of her headrest. It looks uncomfortable for her and we find ourselves tilting her chair way back into an inclined position to try and keep her from doing it.

Mira’s rapid growth over the past 18 months has also prompted us to start searching for a lift van. After visiting with a sales rep a few weeks ago, we know what we need and want in terms of a van, now we just need $65,000 to pay for it. Small problem. We have no money. We are holding off until next year and hopefully be in a better position to at least reevaluate what we might be able to afford. For now, we are going to try and get her a new car seat system, as she has maxed out her Britax seat, but that process will take a little while with insurance, as it always does. With the combination of a new chair and a new car seat, we will see if we can get through another year of transferring her in and out of our current minivan.

The biggest adjustment we have had over the past year is Mira starting school. Mira started kindergarten with the school district last fall, going half days for most of the school year. Toward the end of the spring semester, she started going full days and she has adjusted well to the extended day. She is now a month into first grade and all is going well. It was difficult to send her off on the bus for the first few days, but Mira loves the ride to school. The movement and the vibration of the bus ride usually gets her in a good mood. The drivers and the staff have been great and I love her teacher and her aides at the school, as they are very caring and attentive.

In terms of medications, Mira has been on a constant regiment of Lyrica and Tranxene. She has been on Lyrica for almost five years now and we think that is it contributing significantly to her weight gain over the past 18 months or so. We are in the process of weaning her off of the Tranxene, as she is also taking clobazam. The hope is that we can fully transition her from Traxene to clobabzam, which is supposed to be less sedating. Once we have cleared that hurdle, we can talk about reducing or eliminating her the Lyrica. We did try weaning her a few years back and it was a disaster. One step at a time. We are actively working with a dietician through Children's Mercy in an effort to try and manage her weight.

We have a had a series of routine neurology appointments over the past 18 months, which seem to always brush on genetic testing and so forth, but nothing revealing has ever come up. Mira’s neurologist has basically told us that Mira has something very similar to Dravet Syndrome (SMEI), although genetic markers thus far have yielded nothing. Mira is currently enrolled in a broader study through Children’s Mercy that will look at over 300+ potential gene mutations, which only a handful might be relevant to Mira specifically. We enrolled her in the study about 10 months ago, but we have not heard anything back.

I think spiritually and mentally our family is in a good place right now and we all seem to be in a groove with three kids in school. Physically, we are often worn out as the logistics of getting Mira around are taxing, but we are actively working on that.

I did start a simple website at http://thefirebreathingduck.com/ as my daily mantra as a parent of a child with special needs. If you enjoy it, please pass it on.

Hope everyone is well with life and family and I will post when I can!