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tag:blogger.com,1999:blog-56807838989291171182014-12-14T16:07:14.108-06:00Miss MiraMira's firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-31419974886331298512014-12-14T15:50:00.005-06:002014-12-14T15:51:47.880-06:00New Swing

We have had the pleasure of living next to a park for the past 14+ years. It's always been a strange mix of green space, play equipment, and at the time we bought the house, an enormous water tower. The water tower, which had been a monument in the landscape since the early 1950's, was decommissioned and dismantled several years ago. Shortly after it was taken down, the park received some minor renovations.

Earlier this year, the city announced they would be giving the park an entire overhaul, which included updated play equipment, a tricycle track, a park shelter, and new swings. I was invited, along with several other adjacent neighbors, to provide input on what we would like to see in the park.

Well, that's an easy question. Mira loves to swing. Having an ADA or an accessible swing would be ideal to have right next door. The only other ADA swing for kids with special needs in the entire area is about 20 miles away, so having one practically in our back yard, would be a dream.

The parks and recreation department was receptive to the idea and incorporated the swing into the plans, along with a host of other comments from neighbors. Construction finally ended late yesterday and the park was opened to the public. Mira was the first one to break in the new swing and she loved it!

I am thankful for living in such a great community, who involves its residents in the decision making process of even the smallest of projects. My deepest thanks to the City of Prairie Village and thanks to Jori Nelson, who helped facilitate the process.Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-5277545834014403852014-12-07T22:34:00.004-06:002014-12-07T22:35:29.361-06:00The Year of the SeizureIt seems like this year will always be remembered as the year of the seizure. While Mira has been battling seizures for the past 9 1/2 years, this year was marked by having them every single day. Her myoclonics seem to have slowly ticked upward throughout the entire year, with no relief in sight.

Let's start with medications. She began the year on Lyrica, which she has been taking for years, while also taking Onfi, which she had been on for about a year. Neither one seem to be doing anything for seizure control. In fact, Onfi caused incredible drowsiness, drooling, and a lot of sedation with her. While she was on Onfi, we struggled with Mira's head control. It seemed to cause a lot of lethargy with her and she was really out of it - struggling just to keep her head up. Ironically, she still was having a ton of myoclonic seizures while on it. After about 18 months of being on Onfi, we decided to wean her off it back in March and April.

We witnessed a consistent flow of myoclonics throughout the entire summer that we just could not control. Mira also continued to average 3-4 involved tonic-clonic seizures a week, sometimes upwards of 6-10 a week. The myoclonics were averaging 100+ a day. Frankly, they are difficult to track, since she has so many. Recently, we tried increasing her Lyrica and it did not go well. Mira had a couple of really positive days with the increase and we were hoping we were headed in the right direction, but she quickly went back to baseline. She started having even more seizures with the increase.

We did have a neurology appointment a few months back and we discussed our options and a plan with her neurologist, in terms of what we can try. Unfortunately, Mira has few options left to try. We first discussed doing a trial of Leucovorin, in the very rare likelihood that Mira might have a CFD (cerebral folate deficiency). A brief trial with folinic acid (a derivative of folic acid) pretty much ruled this out. She is still taking it now, but it is clear that she does not have a CFD or anything related to MTHFR (methylenetetrahydrofolate reductase deficiency) and if she does, it wouldn't be remedied with Leucovorin. We have discussed MTHFR and CFD possibilities with several of her past neurologists, so we figured it was worth a trial.

Our second option was to increase her current Lyrica dosage and unfortunately, we have considered the increase a failure at this point, as it ironically only seemed to cause more seizure activity. After a few more discussions with her neurologist over the past week, we have decided to abandon Lyrica all together, We feel collectively, that it lost its efficacy long ago and the fewer ineffective medications in her system, the better, She is in the process of weaning right now, which makes us nervous since she has been on it for so long.

While she is weaning the Lyrica, we are trying Vimpat (lacosamide) to help control her seizures. Lacosamide is a sodium-channel inhibitor, which she has tried before, so we are not very optimistic. It is one of the few medications she hasn't tried though. If it proves to be ineffective or worsens her seizures, we aren't sure what to consider. One step at a time.

One of the big issues this year also has to do with Mira's weight. She had lost a considerable amount over the past 9-10 months, enough to drop her from the 90% percentile to the 30% range. While her neurologist wasn't overly concerned, he did recommend a consult with a dietitian. We met with someone in clinic to get Mira on a decent calorie intake and she has already gained back a few pounds over the past month.

Mira has had some positive days, as shown in the video below, but they are few and far between. Most days, she is having so many drop seizures and myoclonics, that it is difficult for her to focus on anything. It's heartbreaking to watch her suffer and there is little left to try and seizures have just taken over her routine as of late.

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Mira has always battled irritability. It's a vicious cycle of seizures, irritability, and sedation. She gets irritable from the constant neurological static, then has a big seizure, and is knocked out for hours afterwards. She tries to play with her toy, has countless myoclonics while she is trying to play, then becomes irritable and frustrated because it is nearly impossible for her to focus or enjoy it with all of the interference.

So where are we now? Besides trying to advocate for legalization of medicinal cannabis in the State of Kansas, we are researching anything and everything to try and help Mira, as we have been doing for the past 9 1/2 years. Reading and researching countless articles, studies, and trials, while trying to remain hopeful that something will help her. We are open to suggestions and input, so feel free to email me at email@example.com.

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-88470679929859853712014-02-02T14:04:00.000-06:002014-02-02T14:04:07.875-06:00Very Brief UpdateWe just finished weaning Mira off of Onfi, after being on it for 18 months or so - I forget how long its been, but nonetheless, she is done with it. We tried increasing the dosage on several occassions, but it failed to have a positive effect on her seizures. It frankly just increased her drooling and made her more lethargic. Mira continues to take Lyrica, which she has been on for 5+ years. It doesn't completely control her seizures, but it is the best we can hope for, for now.

With all of the buzz (no pun intended) with CBD/THC, we thought it might be worth a shot to try holy basil, which supposedly has some of the same effects/mechanisms as CBD, yet is legal. Mira has been on a low dosage since the end of December, but it has failed to helped. We will give it a little longer until we completely abandon it.

Will update pics soon.
Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-23596733699498355812012-11-02T21:01:00.001-05:002012-11-02T21:10:46.765-05:00Mira'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.

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-39965485052096646492012-10-07T20:43:00.002-05:002012-10-07T20:43:25.480-05:00Mira's New Chair is Arriving SoonMira'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!!!!!!!Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-23101398843150927822012-09-23T20:55:00.000-05:002012-09-23T20:55:52.035-05:00The Slow WeanWe 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.

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-90623385828343274332012-09-16T23:20:00.002-05:002012-09-17T21:01:43.890-05:00The 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 95thpercentile 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!
Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-31892587521252804982011-05-08T21:16:00.002-05:002011-05-08T22:02:14.797-05:00Neurology AppointmentLast week, we had a long standing neurology appointment, and it turned out to be probably one of the shortest appointments I think we have had to date. This is the second time we have seen this particular neurologist, and Sarah and I are pretty comfortable with him. He is direct, which is great, but more importantly, he recognizes that our family had been on this journey for almost 6 years and he is merely acting as a guide, acting in our best interest, on how to continue the journey.

We discussed medications first and foremost. With all of the changes coming up (mainly Mira's transition into her new summer schedule with the school district and our potentially slow and gradual departure from IDC) that we have no intention of rocking the boat with medication changes on top of everything else. Mira has been on a combination of Lyrica and Clorazepate for some time now and we think it is the best balance that we can achieve for her. She is still having daily seizures (all types - myoclonics, tonic-clonics, head drops, absence, etc.) but nothing new or out of the ordinary. Lyrica helps with the seizures while the clorazepate helps with the irritability. We briefly discussed clobazam, which is only one of two medications that Mira hasn't tried, but I think we will only look to alternatives if things are getting worse.

Genetics is always woven into the dialogue at every neurology appointment and this past meeting was no exception. We ran down the list of isolated gene testing and her neuro keeps coming back to Dravet's Syndrome (SMEI - Severe Myoclonic Epilepsy in Infancy) and the genetic anomalies associated with it, focusing on the SCN1A gene, which Mira has already tested negative for, years ago. There are now additional genes, including SCN1A and SCN1B that are being tied to kids with Dravet-like symptoms - the genetic connection(s) keep expanding. Based on Mira's history, I'm not sure I necessarily agree that Dravet's is accurate in terms of a diagnosis, but anything is possible I suppose. The spectrum with any diagnosis is so varied and unpredictable that it is pointless to theorize any more about which gene causes what. Based on what I have read, I think Dravet's is less likely in Mira's case - again, just based on history and symptoms of the disorder.

Regardless, we are taking the approach that it is fruitless to test for isolated genes (Mira has done 5-10 different genes to date) particularly when the testing at this stage, would be very, very low. Thus, we are going to wait until Children's Mercy advanced genetic testing becomes available, which will be in another 6-9 months. I don't recall the name of the specific test, but I do know that it will test for over 300+ genes, instead of single isolated genes. The technology keeps advancing exponentially it seems.

We also decided during our appointment that we should reduce our neurology visits to just once a year now. Mira has been pretty steady in terms of her seizure activity over the past 2 years and there really is no compelling reason why we would need to continue our 6 month visits. All of her medication tweaks over the past few years have been either over the phone or through email.

Unless of course, we enjoy paying our new copay at CMH, which TRIPLED since our last visit. Ah, insurance...........sometimes it is pointless.
Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-18671039810056228242011-04-17T21:06:00.037-05:002011-04-17T22:29:04.120-05:00Ramp

As an architect, I never thought I would have the ADA hit so close to home, but nonetheless, here we are. We are having to make modifications to the house, most of which are efforts just to get her chair around the house smoothly. We had used ADA guidelines as a reference, incorporating some of these concepts into the addition (i.e. 3' doors, wider clearances in the kitchen, etc.) but the existing parts of the house prove to be a little more complicated. Modifying a 1953 ranch to meet any sort of ADA compliance is not an easy task. On the interior, there are 2' wide doors and if you can find a 3' turning radius anywhere but the center of the living room, you're ecstatic. The exterior is equally as challenging.<o:p></o:p>

We have been getting accustomed to Mira's new chair over the past few months and one of the challenges we noticed right from the start was just getting the chair in and out of the house. The KidCart (her former system) was easy, since we could simply detach the chair from the base and either carry it out or practically bounce it down the two steps on our front stoop, since it was so light. A majority of the time, the base stayed in the van, so it was really a non-issue. The Zippie (her new chair) weighs considerably more and has anti-tip brackets on the back, which makes it more difficult to get down even a couple stairs.<o:p></o:p>

Back in January, we had a Band-Aid solution, which was to buy a folding ramp until we could modify the front walkway of the house permanently. The folding ramp was suffice for a few months, but running down the 5' incline with the Zippie ended up being a 30 degree dive downward that you learned to prep for with a broad stance and a firm grip on the storm door when stepping onto the stoop. Unfortunately, we could only fit a 5' run from the stoop before we ended up in the bushes, based on the curved walkway.<o:p></o:p>

The challenge with a permanent ramp was to not take on yet another costly and lengthy home improvement exercise - we have met our quota for the next 10 years. So we decided the easiest and most cost effective solution was to simply pour a concrete slope directly over our existing walk. There was some minor demolition, in order to get good concrete coverage and to fan out the end of the path in order to get around the van when parked. We also used geofoam (lightweight foam) to reduce the weight of the concrete at the deeper sections toward the house. In addition to the ramp itself, we also had a small 3' x 20' pad poured on the opposite side of the driveway to get around the van more easily.<o:p></o:p>

It was the obvious and least-invasive solution - the whole project went off without a hitch and was finished quickly. The ramp is only slightly steeper than a typical ADA slope, but it works beautifully for us. We will have some landscape work to do in the future, but ironically, you can barely notice the ramp from the street, as it is right now.<o:p></o:p>

I wanted to extend my eternal thanks to our neighbor Jim Rothberg, who sacrificed his time, materials, and expertise in getting this done for us. We are tremendously grateful for all of your efforts and hard work. Sarah and I cannot thank you enough.

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-27324603531566374852011-03-05T08:45:00.008-06:002011-03-05T09:14:49.738-06:00Baby Day PhotographyMira's former therapist and friend Shannon Lockwood at IDC came in to our house this past week to document our family, as a sort of 'day in the life' through candid pictures. They turned out to be nothing short of amazing. As somebody who really appreciates a good photo eye, I think the images she took are incredible. Our pictures are on the March 4th, 2011 blog post here on her website. With so many images to choose from, we have our work cut out for us in which ones we want to have framed. We cannot thank her enough for taking such great shots.

Shannon also compiled a video of all the images in this video:

Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-86106101826182349782011-01-31T23:12:00.020-06:002011-01-31T23:46:42.201-06:00Update, Pictures, + Videos
For weeks and months now, I have been telling myself (for some odd reason it seems every Sunday evening about 11:30pm when the weekend is finally winding down and Sarah and I are gearing up for the week ahead, that I 'might possibly be on the verge of planning to maybe, perhaps, certainly, positively update Mira's blog this week, at some point' which by mid-week turns to 'this is it – I am GOING to post something this week' which ultimately leads to yet another Sunday. So, where were we………..Mira's 5th birthday…………………<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>

Well, first, I have to have rant and I will apologize in advance for immediately hijacking the first 8 or 9 paragraphs about Mira's chair. As I rewind and look at Mira's last post, I had to chuckle when I read about where we were with her chair back in June. Alas, the eleven month saga has finally come to closure, only a few weeks ago. I will try to provide (don't hold me to this) only the Cliff Notes version of the endless phone calls, emails, and absolute fuming on our end that ensued throughout the entire process of obtaining a single piece of durable medical equipment.<o:p></o:p>

Having navigated only the surface of the icy waters of health care, insurance, seating clinics, clearinghouses, DME caps, manufacturers, middle-men, markups, documentation, premiums, processing and mainly, excuses, over the past year, it has become painfully clear why health care in this country is broken or at least, the lug nuts are loose and it's about to lose a wheel. It is a host of factors, yet in this case, it is a story of broken communication, internally and externally, of just one segment of one simple, single transaction – we just wanted to order a chair for our daughter. The process was absurd. There are too many people involved for one transaction, too many channels to navigate, too many documents, too many decisions (and non-decisions alike) too much waiting, and too much money involved. So many people are trying to get paid for one single transaction, which ultimately means, making the entire process TOO CONVOLUTED.<o:p></o:p>

When we first started this, in January of 2010, we felt optimistic and empowered, thinking we were on top of it all – it's early in the year, we were getting Mira fitted and sized, and on track to have her in a new system by spring. It's January. She gets measured, the order is rolling. Or is it……..we don't know. Behind the scenes, the paperwork sits, and gets shuffled, and pushed to someone else, a second party, who sits on it, and reshuffles it, then sends it back, in the wrong direction. Then the company resends paperwork to secondary internal group, again, who finally correctly routes it to insurance. When did insurance actually see this paperwork? Not sure. Is this the first time they have actually seen it? Not sure. Internal finger pointing ensues and a calming assurance is issued from the company that they will resolve this communication problem. They will fix this in the future. Insurance company now needs time to think about the claim, now that they have it. Perhaps more documentation might be needed to help render a decision. One month goes by, two months, three months. No answers. No direction. Severed communication string continues to unravel. Secondary clearinghouse company (funded by the seating company) gets the paperwork back from insurance – the request is to resend it because they need more documentation in regards to Mira's condition. They can't make a decision based on what they currently have.<o:p></o:p>

Fast forward to summer 2010, we were no further along than we were in January. By this time, we begin to question whether or not the system we ordered would even work for her by the time we actually get it. At Mira's current growth rate, she is poised to outgrow the chair in a year. One thing was for certain – we do NOT want to go through this entire process again in another twelve months. We just spent five months getting nowhere. In August, after finally getting in contact with her seating company, we came to the conclusion that the system wouldn't work for her for the long term. At the same time, it was leaking out that (after nearly 7 months later, endless documentation, and overwhelming frustration in trying to communicate with the seating company) that the system we were ordering was possibly going to be denied by insurance. At this point, we had to make another critical decision. Do we continue this process with this seating company or do we start over completely somewhere else? Let's give them one more chance to make amends. Bad decision.<o:p></o:p>

Again, we leaned on our insurance to make a decision. We couldn't place a separate order for a different system until the initial claim was processed and cleared, regardless of where we went - we just needed documentation from them to move forward. In early September, they denied the claim over the phone, as we expected. Twenty minutes later, they called me back and said it had been 'overturned' and that they would now approve the claim. It took you two months to make a decision and twenty minutes to overturn it? Really? Ironically, it didn't matter, since we were ordering a different chair. At that point, we went back to the seating company (the same one, complete with atrocious customer service – we failed to learn our lesson at this point) to resize Mira for a new system and headed BACK down this path, only this time, we requested a case manager through insurance in an effort to expedite the process.<o:p></o:p>

In late September, Mira was measured and sized for the new system and the process starts over ... this time with a proactive insurance case manager on-board. Then we wait, again. One week, two weeks, three weeks, and the cycle of crappy, non-communicative customer service escalates, all over again. October goes by. Finally, just before Halloween, insurance approves Mira's new chair. We call our rep at the seating company and relay our exciting news. They assure us they will act expeditiously. And again, we wait. It's mid-November. We can't stand it anymore and it's almost Thanksgiving. We remember the quote from the sales rep weeks ago, something along the line of 'we will have Mira in her new chair by Thanksgiving' and I laugh sadistically.<o:p></o:p>

We pick up the phone. Good morning, seating company: WHAT IN THE F%*K IS THE STATUS ON MIRA'S CHAIR?!?! (in a more rational tone than I am portraying, but nevertheless thinking). Response: Oh, they tell us, we have been waiting for you to give us a verbal commitment that you will pay the out of pocket costs before we will order her chair and NO her chair isn't ordered. Cue the sound of screeching tires ... WHAT??!?!?!!!<o:p></o:p>

I cannot believe I am hearing this. I ask for them to send the itemized order for her chair to me via email, so I can review it. I hang up the phone. Ten minutes later I receive the quote via email. Eyes squinting at the screen, I read the cost of the chair and steam begins to whistle in Popeye-esque fashion from both ear canals. Well, this is interesting, Horribly-Communicating-Seating-Company. It says here, based on what you are now deciding to charge us for the chair, after our applied annual DME cap, my out-of-pocket costs are going to be $4,200. That's almost double what you quoted us TWO MONTHS AGO WHEN YOU WERE SUPPOSED TO ORDER HER CHAIR. At this point, with gnashing teeth, I call the seating company back and said to NOT order the chair, because not only is the quote considerably higher than what you told us before, but yet again, you failed to do your job properly. Let's remember that you are actually in customer service. I have no idea how you survive as a business, but somehow you do. We are officially done with you. I could be cliché and say 'strike three' but the reality is I lost count after 7 or 8 strikes.<o:p></o:p>

Two days before Thanksgiving, we took Mira's chair order in hand, went to a DIFFERENT seating company, placed the order, had it re-approved by our case manager through insurance (who is a rock-star in this process), and took possession of her chair, for $2,000 less than what we were quoted by the first company, all by the end of the year. We accomplished more with this company in 6 weeks than we did in 10 months with the first company.<o:p></o:p>

One month later after all of this dust has settled, I am slowly calming my frustration. I have never, in my entire life, in dealing with any transaction, with any company, firm, office, or individual, ever dealt with such poor customer service. Ironically, they went ahead and ordered the chair (without our consent – without a phone call, email, or ANY sort of gesture to try and contact us, yet again) in early December, and now they are stuck with it. In the end, poor communication and karma bit them in the ass and they get to deal with a $6,700 chair that we don't need, and personally, I could not care any less. I am done with my rant and am now moving on.<o:p></o:p>

The chair itself is awesome and everything that we need for Mira. As she gets bigger, the chair will accommodate. We are currently making some modifications to the house, getting bids on pouring a ramp up to the front stoop. Right now, we are having to lift her chair in and out of the back of the van, but we do have a folding ramp. Ultimately, we will look into getting a converted van, but that is another adventure, hopefully in 2012.<o:p></o:p>

In other news…………….Mira's neurologist left last summer and we had our first appointment with her new neuro, which went very well. He is approachable, direct, and has an open mind. We went through a lengthy review of all Mira's history and medications, ultimately focusing on two things: 1. seizure control and 2. minimizing/weaning anything out of her routine that may not be helping. Clearly, Lyrica works for Mira – we have no intentions of weaning her off of pregabalin. We have ventured down this road, with poor results. What all of us did question, however, was clorazepate. This is an older benzodiazepine, with very sedating properties, that may or may not be doing anything for her. We originally used it for her irritability and anxiety, but now questioned whether or not she should 1. be at this dosage and 2. whether it was doing anything for seizure control. Collectively, we agreed to try weaning her off it.<o:p></o:p>

It is all trial and error and we found out the hard way that she needs clorazepate. The weaning process took several weeks and by the time she was completely off of it, Mira was a mess. Her irritability gradually increased to the point where she was crying inconsolably for most of the day. Then she started getting up again at night, screaming, crying, and was not a happy girl. She was extremely irritable to the point that NOTHING would help. We have tactics, we tried them all and now, we are done with this – put her back on it, right now. The answer to this particular question would be YES, Mira needs to be on clorazepate. Within 3 or 4 days, Mira was back to her old self without the constant irritability, fussing, and crying. There was no finger-pointing, questioning, or anything. Just put her back on it and let's move on.<o:p></o:p>

With her new neurologist, we also discussed genetics. His thought was that there is no need to go on a fishing expedition and continue to test for isolated genes, based on the literature that is out there now. Genetic deletions, mutations, rearrangements, and mosaicisms are being discovered every other day – some relevant; most are not. All of these genes: MECP2, CDKL5, STXBP1, FOXG1, SCN1A, and the list keeps growing that all link back to intractable epilepsy – Mira has been tested for most, but not all of them. Her neurologist basically said that until a whole genome sequencing effort was commercially available and/or affordable, there was no valid reason for entertaining additional testing for specific genes. We are fine with this. There really is no compelling reason other than to point to a particular gene (ABC123) and say 'there it is' – congratulations, you found it. It obviously doesn't help Mira's day-to-day quality of life or will help her per se, but it would certainly make it easier to explain.<o:p></o:p>

Completely switching gears, Mira has a new name as of late – Shark Teeth. Mira lost her first two teeth this past week. One of them we have and the other is lost. As her lower permanent teeth were pushing up, her new ones hadn't worked themselves out, thus the two rows of teeth for a few weeks. So Shark Teeth gets filed in our mental Rolodex of names for Mira's nuances, mannerisms, toys and the like: there's the dragon, the Bunz, happy claps, Meerz, and now Shark Teeth.<o:p></o:p>

Mira continues to grow. At her last appointment in September, she was weighing in at 60 pounds and is still in the 90th percentile for height. As she increases in size, our diaper options decrease. We officially had to give up the Stage 7 diaper route (available only online) and move to an adult-type diaper. I was flabbergasted at the size of these things. We ordered a sample of the extra-smalls, based on her waist and they were a little snug still, so we quickly moved up to the small size. The word small is a misnomer – there is nothing small about them, in fact, they remind me of a trash bag, only with a light green hue. The flaps are huge, the tabs are unforgiving and they are expensive. Yet, they work, so no complaints. We are using up the last of the Stage 7 order and transitioning into them successfully, but not without some initial jaw-dropping.<o:p></o:p>

The house is all but done for now – some minor trim work and some painting is all that remains. When the weather warms up, we can finish painting the interior windows an actually start on some landscaping in the spring.<o:p></o:p>

I am posting a bunch of random images from June through this past weekend, which is how our lives seem to function these days – a potpourri of kids, family, housework, occasional travels (Sarah surprised me for my 40th in September and we took and extended weekend in Chicago) and toy repairs. Mira broke her fifth Tomy toy, but we were able to salvage parts from old ones and rebuild it. We also found another backup on Ebay, so I think we are in the clear for a while.<o:p></o:p>

I also posted a bunch of random videos on Mira's YouTube site here. They aren't all that exciting, but it gives you a good idea of Mira's mobility these days. Hope everyone is doing well and thanks for all of your thoughts, prayers, help, and generosity over the past year!

 Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-91769753830098590112010-06-29T22:12:00.023-05:002010-06-29T22:59:10.350-05:00Mira Turns Five!Well, where to begin. First the big news. Mira turned 5 yesterday! I cannot believe she is already celebrating her 5th birthday, when I swear it was yesterday she just turned 4. We celebrated her birthday at Avelluto's for dinner, went swimming, and had pink frosted cupcakes for dessert. Mira enjoyed a couple of scoops of pink frosting after we opened presents, then the sugar rush ensued. I think she would have eaten the entire tub of frosting had we let her – it was a big hit. Thanks to everyone for all of the cards and gifts!

Things have finally settled down over the past few months, after having some medication and irritability struggles with Mira in March and April. Over the course of a few months, Mira's demeanor had become progressively worse – more seizures, more crying, more fussiness, more twitching, and just some all around rough times with her around the beginning of May. She had a couple of longer, intense seizures during this stretch as well, which we haven't seen in a while. It basically came down to her needing an increase in her Lyrica dosage, which we ultimately did and things have gotten back on track. It's frankly so difficult to tell what is happening with her and ultimately, it is a guessing game most of the time. We have attributed this latest bout to Lyrica. Something in that medication works for her and we need to just make sure we are at a therapeutic dosage for her all the time. She is now holding on a steady dosage, along with clorzaepate.

We did get some unsettling news about a month ago that Mira's primary neurologist is leaving Children's Mercy. After 3+ years as her only neurologist, we are very saddened to see him go. We were able to schedule a final appointment with him next week before he departs to the east coast for good, then we begin a new search for someone else in the clinic. Over the years, Mira has seen three other neuros in clinic (in KC and Saint Louis) and I have corresponded with countless other neurologists, doctors, nutritionists, geneticists, parents, theorists, and quacks alike in our search for help and guidance. He has always been on target with Mira and very understanding. We will miss him.

Since our last post, ironically, we are no further along in obtaining Mira's new mobility system. The combination of endless insurance red tape and ongoing seating clinic miscommunication equals frustration for us. While Mira continues to kick apart (literally) the connections on her KidCart, we continue to prod the seating clinic and insurance company to ensure the process is moving forward. It is painful at times, but we are frankly at the mercy of those who are pushing (albiet very, very slowly) this funding paper trail around. We did start this back in early January…….and now it's almost July.

In terms of therapy, Mira is doing excellent. She is still getting weekly OT, PT, swimming, feeding, and we are still doing hippotherapy (weather permitting) nearly every week. Mira has made great strides over the past six months in weight bearing on her legs. During some of her therapy sessions, her therapist(s) have been getting her in a gait trainer (which Mira loves) and having her get used to the idea of putting pressure through her legs while on a very slow-moving treadmill. She is also starting to not only grasp her bottles, but able to hold it in place during drinking! Most of the time, she is grabbing at the bottle and will hold the bottle (predominantly with her right hand) and we have been letting her drink it unassisted! She is doing so well.

We invested in a pool pass this year and are getting her in the pool as much as we can, since it is always a hit with her. She LOVES being in the pool – lots of smiles, lots of splashing, and it wears her out. Jonah on the other hand HATES the water – bath time is terrible and he despises the pool. He is slowly coming around thanks to Mira's ecstatic nature in the pool. Eli is taking lessons again this year and is increasingly confident in the water. He has made great strides over the past year and is really enjoying the water slides at all the pools. He now is eyeing the diving boards.

We have been getting some help a few days a week for the summer from a graduate student who works at Mira's school. She is fantastic with Mira, very enthusiastic, and we are extremely thankful to have the help. We wish we could pay her more!

We have taken a few weekend trips already this summer, to Saint Louis and to Omaha, and are tentatively planning a few more trips toward the end of the summer, but right now, it is good to just take a break. With all of the major renovation and addition work on the house out of the way, we are just in painting and trim work mode. We have a roll-off scheduled for delivery (our third one for this project) on Friday, mainly to clean out and throw away all of the leftover construction material and yard debris. We lost yet ANOTHER tree this year, after a 50 foot limb broke off and came crashing down in our front yard, destroying part of the park fence, gouging the yard, and taking out a couple of shrubs. Fortunately, it didn't fall on the house, but cost us a small fortune to have it removed.

On a high note, Sarah and I celebrated our 10 year wedding anniversary this past month. We were able to have a small getaway weekend to celebrate and had dinner at the best restaurant in the world (well, at least in Kansas City and it is our favorite) called Le Fou Frog. In the 12+ years we have been going there, they have never disappointed and the mussels and lobster tails WILL make you drool, guaranteed. Thanks Auntie Aura for watching the kids – we are forever in your debt.

Speaking of Sarah – she is becoming quite the photographer. She took most of these pictures. The close-ups of Mira with her new dress are stunning at high-res. Kudos to my wonderful wife, who is really taking some great shots. The video at the end isn't very exciting (I did it), but gives you an idea of what Mira does most of the time in her chair. Notice the double-banding of her toy, so there is NO WAY for her to pull it off her tray and shove it on the floor. Now she pulls the entire tray with it, so it all comes crashing down togehter on the hardwoods, making the most awful noise in the world. Needless to say, Mira LOVES that toy - thanks to Erin for donating Fletcher's old one – that was very thoughtful and we appreciate it very much!

We are looking forward to a quieter summer than last year and now that we have more room, please visit!

<embed src="http://www.youtube.com/v/v075cdCqblI&hl=" fs="1" width="425" height="344" type="application/x-shockwave-flash" allowfullscreen="true" allowscriptaccess="always"></embed>

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-81956953234497361302010-03-29T13:56:00.006-05:002010-03-29T14:07:33.079-05:00Mira's Toy

Mira broke her third (and last) TOMY piano toy. We have been trying to find one on eBay and just missed the bidding for one yesterday. We are trying to find another one ANYWHERE. If anyone knows where we can get one, please let us know. It is a TOMY brand, sometimes called a globe toy, bulb toy, piano toy, or play by light toy. It was made in 1999. It is one of the few toys that Mira consistently interacts with. They are really hard to find now but if any parent is willing to part with one, we will buy it!
Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-58757664176707509132010-01-24T22:23:00.013-06:002010-01-24T22:45:59.639-06:00Finally.......An Update!It's official. I have personally adopted September as 'Merry-Go-Round Month'. I think it all started a few years ago, when Eli was in full Preschool mode and Mira was in full-therapy mode. And Jonah makes three (although technically not in school – three just adds to the daily chaos).

The first week in September starts off fun and exciting, with the start of school of course - new beginnings, new friends, and school pictures, much like the euphoria you feel of first getting on a merry-go-round. Lights flashing, music blaring, the ride slowly starts. The second week in September is much like the first, quickly accelerating – twice as fast as the first. Cub Scout meetings. Popcorn sales. IEP meetings. Spinning. Ups and downs. Up and downs. Toward the middle of the ride, you realize the cuddly blue dolphin you chose to sit on is loose from its pole on the ride. It squeaks a little (much like a dolphin would squeak in real life I suppose) but this squeak sounds desperate and maniacal. Things are speeding up and you realize upon further inspection that the dolphin is missing a flipper and in its place, painted over duct tape. The ride spins faster and faster. You are too distracted to actually enjoy the ride, focusing on the funnel cake stands spinning wildly around you. You find a focal point – perhaps the floor. The mirrored ceiling, the child barfing next to you and the parent trying to get the operator's attention in a desperate attempt to bring the ride to a screeching halt. The dolphin keeps squeaking. Now in full motion, the pinnacle of the ride hits you like a lead balloon. You are nauseous, breathing heavy, over stimulated by noise, red lights, green lights, laughing clowns and scary unbalanced MIDI music. The ride starts to decelerate and it's not soon enough. You start mapping your exit strategy during this winding down phase, gradually distancing yourself from the squeaking dolphin, which has caused your ears to seemingly bleed. Thank God, it's the end of the ride and the end of September. The winding down of pancake breakfasts, wood floor deliveries, fundraisers, Boy Scout campouts, drywall contractors, and medication trials is officially here. It's October. Finally.

Then, procrastination sets in. (I started this post in October. It's now January 2010.) So, so bad. I am still spinning from September.

So where to begin. In early September, Mira had a routine neurology visit, which went as expected, I suppose. Every time Sarah and I go in with a certain degree of expectation for one of Mira's neuro appointments, we walk out an hour later (or 3 hours later in some cases) wondering how we were spun 90 degrees from the mindset with which we had expected to leave. Sarah and I call it the '90 degree effect'. One would think we would have learned by now. The main topic of discussion this visit was Mira's irritability. The past few months have been rough with her. We tried Banzel briefly, which seemed to help some initially, but quickly turned sour after a week or so. She was really cranky and having lots of seizures. We gave it a few weeks, but it seemed to noticeably cause more harm than good after a week. Strike one.

One of her neuro's other suggestions to combat the irritability factor was to try Risperdal (risperidone) which is an antipsychotic sometimes used to treat schizophrenia. Knowing it would do nothing to stop her seizures; we tried it as a potential relief from her seemingly constant uncomfortable disposition. After a few weeks of that, we abandoned it. We were told it either works or it doesn't for her. It didn't. Strike two. Then we tried Carbatrol (carbamazepine), yet another antiepileptic. Still very cranky and no change in seizure activity. Strike three to finish out 2009. Our batting average with meds this year is about .125, and that's being generous.

In mid-December, we tried Clorazepate, (in the benzodiazepine family of drugs, i.e. sedating similarly to valium) which she is currently taking. We are trying it mainly to aid in resolving her irritability and if it were to decrease her seizures, all the better. We started at a lower dosage and saw some modest improvement, then increased her dosage several weeks later, which is where she stands now. She is still having seizures, but they are far less frequent and her irritability has decreased considerably since increasing her dosage. All in all, we feel this is the best we could hope for right now, so we aren't rocking the boat. We're trying to find the elusive sweet spot in between overly medicated/non-functioning and extremely irritable/non-functioning; finding that balance is difficult.

Nothing else significant surfaced in her appointment in September. We talked genetics and testing for a bit, but there are several fundamental issues that come up with this discussion every time. First, genetics is moving at such an incredible pace that it is difficult to keep up with the constant gene deletion and mutation discoveries that are coming to light. Literally, hundreds of genetic anomalies are being discovered every month. Second, there are so many genetic markers associated with particular developmental and neurological issues; you could not possibly test for every one relevant to Mira's situation. CMH is in the process of implementing some new genetic technology screens (one in particular called a 'Whole Genome Exon Sequencing' screen) will be available some time this year and Mira will be one of the first kids tested at the hospital. It is supposed to scan for an exponentially higher number of mutations and deletions than even 2 years ago.

The first week in October brought us a stomach bug too. Mira caught it first, threw up in her bed numerous times, and quickly passed it on to Jonah. They passed it on to me, where I went home one day after hugging the bathroom sink at work a few times. Eventually it passed. Otherwise we've just been weathering winter's standard onslaught of various cold virus' and mild fevers, with the most recent round of congestion, phlegm and breathing treatments (for Jonah) ending two weeks ago with everyone thankfully turning a corner. We're hunkering down and hoping to avoid any more major illnesses. Fingers crossed!

November and December simply flew by. We spent Thanksgiving with the Flora's, who were just getting settled in after their recent move to Omaha. I think we will be being seeing more of each other from now on, since we are only 3 hours away and not 6 – it is fantastic to be that much closer! Mira loved hanging out at their new house, since they have acres of room (all carpeted so she Mira can roll around) downstairs in their entertainment room.

December was a big month for Jonah, who officially started walking around Christmas. He had been scooting around, always pushing with his right arm, for months. I don't think he was interested in walking for a long time for two reasons. First, he was faster and more efficient at just scooting – lightning fast and second, he realized that if he just waits or screams it out long enough, someone will pick him up and just carry him ALL THE TIME! He had perfected the art of getting people to pick him up and still takes full advantage of it when he is tired. A month later, he is cruising around the house and quickly getting into everything.

Christmas was very low key this year, perhaps due to the fact that we had 18 inches of snow dumped on us here in Kansas City and constant single digit temperatures for nearly three weeks. With Christmas break and the weather, I think Eli and Mira were home from school and therapy for a total of 2 days during that time. Lots of school cancellations and trying to find things to do indoors. In early January, the temperatures came back up we all got back into the full swing of 2010.

Mira's diet has shifted to pretty much all liquid all the time, with the exception of feeding therapy and the occasional applesauce, where her therapist can usually get her to eat some solids. Otherwise, she is pretty content and her diet of combination of warm soy and rice milk, mixed with protein powder and supplements, topped off with a Pediasure (sometimes two) at some point during the day. We have found that since abandoning cow's milk all together, her skin has cleared up dramatically. We aren't sure whether or not she has an allergic reaction with dairy or cow's milk in particular, but she doesn't seem to miss it and her skin is definitely better. She's also taking Zyrtec everyday too, so that may be helping her eczema as well.

As always, every prepared drink has to be the right temperature or she will reject it. Mira has now perfected the art of taste-testing each bottle when you put it to her lips. She chews on the end for a few seconds, to get a little but in her mouth, and then decides whether or not it meets her very specific temperature requirements. Warm, but not hot. Never cold or she will spit it out with vigor and push the bottle right out of her face. She knows what she likes.

Sleep has been much better, although far from perfect. Mira had some weeks back in November and December where we were using trazodone practically every night, but she has settled back into her routine of having one rough night every few weeks. We aren't exactly sure how much she is awake in the middle of the night; some nights we can hear making noise for hours and other nights not so much as a peep. We gave up on using melatonin for good, finding that the trazodone is much more effective for her. The last few weeks Mira has been getting up consistently about midnight or 1:00am, taking a bottle and slowly going back to sleep, after an hour of bouncing around in her bed.

This past week we started the wheels in motion (no pun intended) to get Mira a new chair system. Her KidCart has worked great for the past two years, but unfortunately, she is out growing it. The system she has now works well, since it is so flexible. It is a three-piece system: a detachable chair that sets in both a high-low base to use around the house, as well as a separate stroller base to everywhere else. Happily, her school has a spare high-low base for her to use during her preschool time, enabling her to be face to face with her peers. We are actively searching for a similar system, but they are very expensive. The process to get her KidCart several years ago took about 10 months from start to finish. We may be looking at a similar timeframe to get her a new chair, thus we are starting early. One of the systems we are looking at is the Panda Futura (http://www.snugseat.com).

Further down the road (yet another bad pun) we are looking at conversion options for the van. One approach would be to convert our existing Odyssey, which is already 3 years old. The other option would be buying a new van that is already been converted. Sarah started doing all the research on Mira's new chair and the van options this past week, so we are still becoming educated, exploring options and costs.

We are officially moved into the addition, despite being only 80% complete. There is a laundry list of ongoing construction tasks that still need to be completed, but we are trying to prioritize what happens next. Anyone who wants to help me do some demolition work, I will take you up on the offer in about 2 seconds. We will be getting a roll-off in about 2 or 3 weeks to start 'Phase 2', the existing part of the house. The plan is to demo our old kitchen and turn it into a laundry room, then demo the existing bathroom, making it more accessible and bringing the 1970's finishes up to date. Finally, the existing hardwoods will be refinished to match the new addition. We are still aiming to be done with the entire project by June 1st, which will be one full year from when we started. It's been a long haul, but will all be worth it once we finish.

Thanks to everyone for all of the wonderful Christmas gifts, thoughts, and prayers for our family. Hope to see more of everyone in 2010!

Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-49452330592631554862009-08-29T22:02:00.018-05:002009-08-29T23:05:58.276-05:00The Long, Long Summer

Such a long, long month and an end to the seemingly longest summer in history. I'm not sure what it is about the end of summer, but it always seems like a whirlwind of pool parties, doctor appointments, and open house nights that consume us all until we reach that glorious finish line around the middle of August. Yes, God bless the starting of school. Eli finished his first full week of first grade and Mira started preschool at IDC this week. I don't think it could be any sooner to get back into some resemblance of a routine to keep our sanity these days.

So, starting from where I left off in the middle of July…….. Mira's MRI results came back a few weeks ago and it was completely normal. No indication of anything abnormal or any sort of hint as to why she is still having daily seizures. It's not as though we were expecting anything out of it – it was more of an update to see if anything has changed since her last MRI, which was three years ago.

Mira's eating habits over the past few months have really gone downhill. She refuses to eat anything by spoon now. This is no longer a hunger strike – it is a flat out refusal to eat and she has perfected it. Mira has now learned to clench her teeth together and avoid getting ANY food in her. Up until this past week (which things have improved slightly) I would say that Sarah and I have successfully gotten her to eat about 2 jars of food total over the past month. She gets plenty of fluid, in fact that all she gets. She is on target for height and weight so we have little concern that she is getting the calories that she needs. We continue to supplement with protein powders mixed with milk, Pediasure, and watered down juice, which she never seems to get tired of.

Mira's irritability was hitting an all-time high a few weeks ago. As I'm sure you have read in other posts, the number one issue we have with Mira is her irritability and how there are days where it is just relentless, and completely exhausts everyone in the house. Mira spends some part of her day, every single day, crying, screaming and/or fussing. If she has a bad day, she usually follows up with a bad night - which she has had several screaming/crying nights over the past few weeks. There are days that NOTHING will make her happy. It's always a guessing game for us as to what is causing her to have such an irritable demeanor every single day, but there is no sense in trying to guess. We usually just chalk it up to something neurological.

We end up having to play junior neurologists during these periods of increased crying and monitor her seizures more closely. Typically, we see an increase in seizures and twitching, which always leads to the conversation of changing medications. We had that conversation a few weeks ago with her neurologist and we decided to put Mira on Banzel (Rufinimide) last week. So far, it has decreased her seizures significantly since she started it, which is fantastic. Her demeanor is improved slightly, but she is still having her daily screaming/crying fits, which are now limited to the late afternoon for some reason (probably because she refuses to eat all day). Her Banzel dosage gets increased tomorrow and we have a standing appointment with her neurologist on Friday to talk about how she is doing on it.

We did try reducing her Lyrica dosage weeks ago with disastrous results. In our efforts to curb her irritability, we talked to her neurologist about setting up a weaning schedule and slowly began to drop her dosage to see if there was a correlation between her crankiness and the Lyrica. Mira was great for a few days but immediately began having really intense seizures and even a few longer tonic-clonic seizures (mostly when waking up) that really took a toll on her. We had not seen intense seizures like those for at least a year or more. Needless to say, we put her back on her regular dosage with the understanding that the Lyrica is doing SOMETHING for her – maybe not controlling her seizures completely, but helping in some capacity. It's all trial and error.

On the house front…………the addition is completely done on the outside and we have been plugging away and installing the mechanical, electrical, and plumbing systems over the past month or so, which has been fairly slow going. We plan on getting the rough-in inspected this week and have a drywall crew on board to start in two weeks. Being in the role(s) of owner, architect, and contractor is exhausting, yet has been extremely cost-effective for us to say the least. Yet we are growing tired of the enormous plastic tarp in our dining area that separates the existing house from the addition. We are slowly getting there. A million thanks to Aura and Ware for taking Sarah and the kids in for a week while I did all of the demolition – there was no way I could have accomplished that much work without your extreme generosity and hospitality!

While Eli is getting back into a groove with school, Jonah is finding his own groove by scooting everywhere around the house. His official new nickname is 'Scooter'. He is pulling up on everything now and it's just a matter of time before the chaos begins. That kid has such an infectious smile and is an unbelievably even-tempered go with the flow sort of kid. If we could only get him to quite waking up every 2 hours in the middle of the night! We are trying some new bedtime routines with him to see if that will help. Wish us luck!

Hope you don't mind if I go off on a tangent...............It's interesting through this journey of Infantile Spasms that there are days that are so draining and exhausting that you just ache - emotionally, physically, spiritually, and everywhere in between. Then we read the daily updates from Reagan Leigh's blog and the struggles that their family deals with every day make our lives seem pretty easy. Our family is at a different point in this journey in some ways, perhaps a little further down the road and we can remember those awful sleepless nights, the insomnia, the nighttime screaming and crying, the terrible eczema, the relentless multiple seizure days, and constant medication trials. The irony I suppose is that it may sound like we are still dealing with those same issues years later (and don't get me wrong – we still are) but they seem so much less severe now than they did just 2 years ago. I don't know whether we have just modified our coping strategies and learned to just 'live with it' or perhaps we have simply become numb to it all and are living in a constant state of high-functioning pseudo-PTSD . It's only been 4 years for us. Who knows what the next 4 will bring. One thing is for sure is that our hearts go out to all of those families dealing with a seizure disorder, whatever stage or severity.

Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-14075087649171933672009-07-14T22:12:00.002-05:002009-07-14T22:22:37.477-05:00MRIMira's MRI yesterday went off without a hitch. She had a rough morning, probably because she wasn't allowed to eat anything 6 hours prior to the MRI and only clear liquids (she has never cared for plain old water) up until a few hours before. She was really hungry and cranky by the time we got to the hospital. Fortunately, everything was running on time and Mira did great during the scan. They said the results would probably be ready toward the end of the week. If nothing remarkable comes from the MRI, chances are we won't hear anything from neurology until our appointment in September.Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-49873216558004004772009-07-08T22:04:00.020-05:002009-07-08T23:27:37.659-05:00Happy Birthday - Part Deux

Last weekend we had our official combined birthday party for Mira, Jonah, Beau, and Evie (friends of ours) at a local swimming/community center in Mission. The party had all of the grandeur and splendor that one could hope for - balloons, hats, goofy sunglasses, and of course, lots of cake. A special thanks to Erin for organizing the party and getting the festivities in order and to Aura, Ware, Addy, and Truman for making the trip in to celebrate with us.

The 4th was a lot of fun - despite the Marching Cobras not being in the lineup this year at Villagefest. Budget cuts are hitting hard this year to Prairie Village apparently. I didn't think that Eli was going to run into his archenemy, Sluggerrrr (the Royal's Mascot) for their third annual Villagefest Smackdown. As luck would have it, Eli and Sluggerrr did eventually meet up on the concourse at Kaufman Stadium that afternoon at the Royals game. Sluggerrr gave Eli a big hug and no one got punched or kicked - I think this year, it was a draw.

This past week has been pretty hectic to say the least. Sarah and I have been on the fence about taking Mira to see a specialist, Dr. Harry Chugani, in Detroit. Dr. Chugani is a neurologist with extensive experience and exposure with children with Infantile Spasms. I have corresponded with him through email over the past few years, asking questions, which he always responds to very quickly. Prior to actually seeing Dr. Chugani in clinic, Mira would be required to have a 24 hour EEG and a PET scan, neither of which she has had in the past. We originally had everything (EEG, PET, and consult) scheduled for the first week in August, but have since postponed the trip.

Going to Detroit would require us to be there for nearly a week, which isn't that big of a stretch from a travel standpoint, it frankly has more to do with putting Mira through additional questionable testing. It's all speculative at this point - looking for a needle in a haystack to a certain degree. For now, we are going to put the trip on hold and see Mira's regular neurologist again, before we potentially reschedule something for Detroit. We are also considering a trip to the Mayo Clinic, which we also want to discuss with her neurologist.

One of tests that Mira has not had in several years is a MRI. She has had two in the past - her first when she was originally diagnosed at 11 weeks old and another when she turned one. Her neurologist thinks it would be a good idea to have another MRI prior to seeing him, to see if there have been any significant changes over the past 3 years. We have the MRI scheduled for this upcoming Monday.

Mira's latest hunger strike has been going on seemingly forever. She is drinking plenty, but snubs absolutely everything from a spoon. The Gerber Goop, oatmeal, and her usual staples have lost their appeal for some reason, thus we resorted to our old standby, fresh baked sweet potatoes. She wouldn't eat a bite yesterday, but we managed to get a half of a bowl in her this evening, which was her first 'full' meal in over a week.

On the flip side, the tooth fairy has been paying (literally and figuratively speaking) more visits to Eli over the past few weeks. Eli's left front tooth fell out last week to which he replied, 'aren't front teeth worth more money to the Tooth Fairy and shouldn't I get a bigger toy for this one?' Yes, I suppose they are and I will relay that message to the old TF and see that you are adequately compensated. Eli is already a chief negotiator at age 6.

We are finally seeing some progress with the addition. After 6 weeks of frustration with our concrete sub, he finally had his crew pouring the walls today. It has been a comedy of errors with the foundation guy and I cannot wait to get him off of the site - he is unprofessional, unreliable, and frankly, just dishonest. The good news is that he is almost done. Good riddance. The framers will start in a few days.

In all of our hustle, craziness, and headaches over the past week with the house, I not only forgot my Dad's birthday last week, but even forgot to wish him a belated birthday on the phone last night when we talked. Sorry, Dad - Happy Birthday!!!

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-28920544188851583742009-06-28T23:55:00.011-05:002009-06-29T00:35:20.958-05:00Happy Birthday Mira!

Mira turned 4 years old today and it was only fitting that after having a week of brutal humidity and upper 90's temperatures, some relief finally arrived, with the weather and with Mira's eating. I say that because after 4 or 5 days of not eating more that two bites at every meal, Mira finally relented and ate a jar of food over lunch. I think we had some good vibes from Tom, Nikki, Sophia, and Siena who were visiting from Saint Louis for the weekend. Mira started one of her hunger strikes earlier this week and has been very, very irritable since. She falls into one of her viscous cycles of crying because she's ravenous, yet refuses to eat patterns until everyone is exhausted and frustrated. Hopefully she turned a corner today and will get back on the eating train.

We have a party planned for Mira on Friday, but in the meantime, we had a small celebration with just Sarah, Eli, Jonah and I, with cake from Avelluto's. Mira quickly snubbed the cake and ultimately ended up in tears. She didn't care much for dinner either, but ended the day on a good note.

The one thing that Mira will consistently respond to is the Bunz (her pull-string bunny) only the original Bunz is in need of serious repair. The string is worn thin and pulled out of its socket, only playing a few seconds of the song before needing to be pulled again. Sarah managed to find a hippo (which is pink like the Bunz) and plays the exact same song! Tonight was our first trial with the faux-Bunz hippo and she loved it. Again, it is one of those moments that Sarah and I enjoy every evening where we know we can get a smile out of Mira at the end of a long and often trying day. If we are really lucky, we get to see 'the dragon', where Mira sticks her tongue out and makes a funny breathing noise when she is really happy - you can barely see a small faint 'dragon' face about 45 seconds into the video I posted.

We did have a great weekend, despite Mira's eating woes - a huge thanks to Tom and Nikki for coming up to hanging out, the birthday gifts, and for watching the kids last night, so Sarah and I could escape to celebrate our 9th anniversary (which was almost 2 weeks ago) at Le Fou Frog. We loved seeing all of you and really appreciated getting out of the house!

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Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-82806396269183261312009-06-01T00:09:00.012-05:002009-06-01T00:22:51.007-05:00Gerber GoopIf there is one thing we have discovered over the past month is that we should do some serious investing in Gerber stock. When I was a kid, we called it Gerber Goop. It looks terrible, smells strange, and is all around, pretty bland. Mira's typical diet up until now has been fairly predictable. Sweet potatoes, oatmeal, warm bottles of milk, and the occasional pureed leftovers. We found months ago that Mira loves warm oatmeal, with maple and brown sugar being one of her favorites. That has been working well for her. Breakfast typically goes off without a hitch, topping the morning off with some warm milk mixed with protein powder to get her day going. After breakfast though, everything is hit or miss with her. She can go on a hunger strike that may last for days, with little food wise that will spark her interest. Until now.

Sarah was out of sweet potatoes a few weeks ago and was desperate around lunch time for Mira, when she figured she would feed her one of Jonah's baby food jars. Mira gobbled it right up and several more jars right after it. This could not be any more convenient. The next day, we loaded up on various 6 ounce Gerber concoctions, including spaghetti and meat sauce, chicken noodle dinner, squash, and anything else that wasn't green or just didn't deserve to be pureed and jarred. Through trial and error, we found that Mira's new found Gerber love is the chicken noodle dinner, which she is now known to throw back 3 jars in a single sitting.

Why she loves bland baby food is beyond us, but she has been consistently eating it for a few weeks now, with a whole lot less hunger strikes. Baby food is bland, but we think she enjoys the texture. Whatever the case, I must admit that it is EXTREMELY convenient. Instead of constantly cooking, reheating, and preparing food that she may or may not eat (which becomes embarrassingly wasteful and expensive), we just take a few jars of Gerber Goop with us and go. We will continue to experiment with some less expensive alternatives, seeing if she might try some canned soups and vegetables. The stage 3 jars can sometimes run $1.50 a piece and Mira easily eats two jars at a sitting, sometimes three.

We also discovered a good organic 'off the shelf' milk that Mira is really enjoying. We have always struggled with warming up milk for her and trying to keep it at her desired temperature when we are out running around, but now we can just take the prepackaged milk containers with us. We found them in bulk at Costco over the weekend. Yet another convenient way to keep Mira happy – room temperature milk that won't spoil on the go.

As far as seizures are concerned, Mira is still having a few involved ones every day. We had lunch in Lawrence this afternoon and she had one at the table that lasted less than 30 seconds or so, but the 'aftershocks' and twitching went on for several minutes afterwards. She has a lot of subtle jerks and twitches throughout the day, but typically only 1 or 2 longer seizures.

We are still struggling some days to keep her happy and today was no exception. Mira was pretty cranky all afternoon, so I took all three kids for a walk after we got back from Lawrence (hey Aura and Ware, did we mention we had La Familia sweet salsa and Free State Beer?!?!); I think Mira enjoyed just getting out again. I could tell, since the minute we came back in the house, she started crying again. It's difficult to keep her entertained all the time, but we try to break up the day for her with trips and outings.

We managed to take a brief road trip last weekend to Saint Louis and were able to watch the Royals snap their losing streak against the Cards at Busch Stadium. (They are since back to their losing ways at Kauffman Stadium.) It was a beautiful day at the Cardinals game and we managed to meet up with some family before, during, and after the game. We also briefly met a mom (who is also named Sarah) at the game who has a daughter nearly identical to Mira, from her age, to her medical history, and whose daughter continues to struggle with seizures, just like Mira. It is great for us to run into other families who you can immediately relate to and know exactly what you are dealing with. You always seem to make an instant connection with them.

Summer break is officially here, with last Tuesday being Eli's last day of Kindergarten. I cannot believe this year has flown by so quickly. Eli is getting so tall and by my estimation, he is going pass me by the fourth grade. He also talks nonstop. I bet he spits out 25,000 words a day. Some days, I seriously wish he had a pause button so I could get a few words in. His new favorite love these days is playing Lego Indiana Jones on the Wii; amazingly he is capable of talking nonstop while playing. He is a great kid with an unbelievable amount of energy.

Jonah is also getting enormous. He has been getting his fair share of tummy time in an effort to entice him to crawl, walk or just throw his weight around so he can understand his potential mobility. It hasn't really motivated him to either crawl or walk, but once you put him in his walker, he will flatten your toes in 2 seconds. Sarah and I wear heavy shoes around the house when he is on a tear in that walker, since he knows no boundaries.

The house project is finally moving forward, after a lot of ongoing frustration with our lender. Unfortunately, the frustration and anxiety has not subsided completely with the bank, but it will all fall into place this week. The good news is that we did actually start construction this past Wednesday. Currently, we have an enormous partially dug hole to show off, but that is about it. While the foundation was being dug, we had a few dilapidated trees removed from our back yard. This week, we are having some electrical work going on and the footings are supposed to be poured by mid-week.

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-90481733488075958422009-04-27T00:50:00.019-05:002009-04-27T01:02:18.821-05:00UpdateHow time gets away from us all – I have been meaning to update Mira's blog for the past month and just now am getting around to it. I swore April just started a few days ago and already we are heading into May.

I first wanted to give an update on what has been happening in Mira's world over the past month and a half. It's hard to explain, but most of days, it seems the more things change, the more they stay the same. Mira continues to have seizures every day, having only one day since my last post where Sarah and I didn't see a single one. Yet, the seizures that she is having are more intense and are lasting longer. She is getting back in to this cycle of having intense seizures again. It feels as though it's 2007 all over again – same intense seizures that slowly and steadily get worse until we have to jump on the medication merry-go-round in hopes of giving her relief.

We started the discussion with her neurologist about Rufinamide, which is pretty new to the market, but the clinic only has 2 kids on it currently and don't seem too eager to put anyone else on it. I have all but given up on Lyrica at this point, despite Mira being seizure free for a period of time last year on it. It certainly isn't doing much now but possibly adding to her irritability.

It is really difficult to explain to people what it is like to live with Mira most days, unless you spend some time with us here in the house. One of the things that we battle with most is the crying and irritability with Mira. She spends a part of her day, every single day, crying and screaming. Some days it is not difficult to distract her with bottles of milk, providing a change of scenery, taking her for a walk, or something to break the cycle of boredom, hunger, or whatever it is you think is ailing her at the moment. Other days, like today, she is just crying, fussy, and inconsolable and there is nothing you can do to snap her out of it. It's very frustrating and sad to watch her. The best way to describe it is to imaging living with a 3 month old baby, all the time. It makes it tough when you have two other kids to take care of on top of it.

I have had several neurologists in the past tell me that the seizures don't hurt her, with which I have to disagree. I think about 90 percent of the time, there is something neurological (and/or medications that exacerbate her issues) that causes her to be irritable and that the seizures themselves are actually causing her pain or at least discomfort. For instance, I was 10 minutes into our stroller ride with Mira and Jonah this afternoon (an attempt to improve her mood after a particularly cranky morning) and she had a very intense seizure. She was pretty quiet afterwards for about 10 or 15 minutes, then became extremely fussy and by the time we got home, she was crying so hard I thought she was going to vomit all over me. It took her another 45 minutes to stop crying.

It's a vicious cycle of seizures, medications, and trying to figure out what is ailing her that it is beyond exhausting for Sarah and I sometimes. We are now debating whether to keep her on the Lyrica, take her off meds altogether or just try something else, which as history has proven to us repeatedly, may be more of a hindrance than helpful to the situation.

Despite all of the constant daily crying drama, things continue to move along slowly with her therapies. We were able to get her 6 weeks of hippotherapy, which were supposed to start last week, but as luck would have it, the therapist was sick. Mira is scheduled to go tomorrow for a session, but it is calling for thundershowers, which usually warrants a cancellation. We haven't made any changes to any of her other therapies and she is making some very small gains (in her gross motor skills especially) through all of it over the past year.

We did get Mira's final CDKL5 labs back about a month ago, which were normal. No surprises there. While this doesn't 'officially' rule out a Rett Syndrome diagnosis, it does ensure that she absolutely does not have a typical or atypical mutation or deletion of almost all of the known genetic abnormalities. There is one final genetic screen that has surfaced over the past year that is known to cause Rett-like symptoms, called the FOXG1 mutation, but we don't really have any intention of testing her for it, unless her neurologist advises it.

Mira is still enjoying the bed and seems very confident in it. We often walk in on her lunging into the sides of the mesh – don't know whether she is testing the durability or trying to rip a hole in it. Needless to say, both Sarah and I are so happy to have it. It gives me some piece of mind that she is safe at night in it and won't injure herself. Some of her other equipment isn't holding up so well. I had to repair the footrest on her Kid Cart (again). She tends to kick it so hard and so often that she knocks the entire assembly out of its socket and it needs to be reassembled and bolted together again. This is the third time she has done this and the footrest is starting to show its frustration with Mira's feet. It's starting to rebel by requiring more bolts to hold it together.

Although it is nearly May and school is drawing to a close in another month, Sarah and I were glad to get some vacation time in the last month and managed to take a couple trips. Our first was to Illinois to visit Auntie Aura and Uncle Ware for a week over spring break. We took all of the kids and even successfully managed a day trip to Chicago and visited the Shedd Aquarium. The following weekend, Sarah and I took the Eli and Jonah to San Diego and spent some quality time with family and at Legoland. We also visited the USS Midway and a quick trip to the Pacific Ocean. I think it was a much needed excursion for Eli to have a couple of days where it was just about him. We get so preoccupied with taking care of Mira and Jonah that Eli often has to patiently (or not so) wait his turn. It is a tough balance for all of us sometimes. It was the first trip we have taken without Mira. It was sad not to have her with us, but at the same time, it would have been a rough trip for her all around, from airplane rides to car rides to sleeping somewhere new for a few days. She was well cared for back at home with friends and family.

Outside of our trips back in March and early April, things have been pretty quiet. Jonah's baptism was last Sunday, which went off almost without a hitch - only one baptismal candle burning incident during the entire ceremony and one KidCart malfunction (yes, the footrest issue). Jonah didn't mind the water too much, but the oil sent him over the edge – I think he was mad because it messed up his hair. He spent all morning on it.

Nothing has been happening on the renovation. We are still waiting on the loan. Now that it's warming up outside, contractors (including my foundation sub) are getting busy and I am finding it tough to get on their schedules. Oh well, we are optimistic that eventually we will start building – might be 2010 at this point.

Marchttp://firstname.lastname@example.com:blogger.com,1999:blog-5680783898929117118.post-55785486008912449162009-03-05T21:27:00.018-06:002009-03-05T22:07:56.341-06:00Mira's New BedAfter months of anticipation, we are excited to announce that Mira's bed is finally here. The mobility supply company came this afternoon and set it up in about an hour. We did have to play some musical furniture prior to it being delivered. First, we had to get the crib out of Mira's room and into Eli's room (where Jonah will start taking naps and eventually start sleeping) and took all the miscellaneous pieces of furniture out, just to get the bed in. Frankly, we had no idea it was going to be so tall. We did take some initial measurements when we ordered it, but the bed pretty much spans from door to window (see pictures below) and comes within inches of the ceiling fan. It's tight, but it works just fine. Prairie Village houses are not known for their size - the bedrooms are really small to begin with and the bed makes it look even smaller, but who cares.

Needless to say, we love it and Mira loves it. No more banging her head into the crib, kicking the rails out, and the best part of all, we can change her in the bed. We currently have a baby changing table that we use to change her on, which works great for Jonah, but not a 3 foot tall, 35 pound wiggly girl. Now we can just swing the side rail down and change her right on the bed.

The bed basically has a very durable mesh fabric on all four sides, along with tilt-up side rails for protection against the wall. The mesh sides all have zippers, so the entire canopy becomes zipped tight and will keep her from falling out. The mesh is non-abrasive and gives just enough to cushion Mira when she falls, leans, or launches herself into it. The canopy posts and side rails are all heavily padded, so there is virtually no way of her knocking her head against anything. It is designed to keep her safe, which it will. The mattress is close to a twin size, which is plenty of room for growth and designed so that she will use it for years to come.

Eli's face sort of summarizes our eventful day - we are very excited to have the bed. Mira did a lot of jumping around and exploring for about a half hour once it was set up, eventually wearing herself out. We knew she was officially spent when she propped her feet up on the side rail and called it quits.

We wanted to personally thank the IDC, the Love Fund, and Dad and Dottie for helping us pay for it. We are eternally grateful - thank you!

Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-36117278587562265832009-03-03T12:48:00.004-06:002009-03-03T13:15:22.625-06:00Bedtime is Almost HereWe are so excited that Mira's bed is finally coming this week! A technician is supposed to come on Thursday afternoon to deliver it and set it up. It could not be any sooner. Jonah will be graduating from the bassinet to Mira's crib. Fortunately, the crib is still in one piece, needing only minor periodic repairs from Mira kicking out the side rails. I have secretly nicknamed her feet 'Tiny Daggers' (named after the not-so-famous song by INXS - I am always very random), kicking and destroying everything within range. It's hard to believe that Mira has been using the crib for the past 3 1/2 years. We have some furniture rearranging to do and we are crossing our fingers that the new bed doesn't take up the entire room.

Now that it is March, I think the sickness is finally subsiding and everyone is feeling better. Jonah still has a slight cough but nearly there, Eli is back to his normal rambunctious self, and Sarah's flu symptoms have drifted away. Mira continues to have some good days and not so good ones - I think she just needs to get out of the house more often, which is difficult when there is snow on the ground and it's 15 degrees. Today is the start of a warming trend, so hopefully we all can get out and get some fresh air.

I spoke with neurology in regards to Mira's CDKL5 testing and they said it could be another 3-4 weeks. Some testing takes longer than others I suppose.

I will post bed pictures Thursday hopefully!Marchttp://email@example.com:blogger.com,1999:blog-5680783898929117118.post-11216990023372369942009-02-21T21:52:00.005-06:002009-02-21T22:21:39.000-06:00Mira..........Volume Control Please!Mira was in an exceptionally good mood all day today. Perhaps it was the riveting trip we took to Home Depot this morning that inspired her. She actually slept through the night last night and didn't get up until after 7:00am. Since Eli has had the flu all week (missing 4 days of school) and now Jonah coming down with a high fever (and Sarah too) Mira and I are turning out to be the only ones avoiding the sickness that has perpetrated our house this past week. Knock on wood, Mira hasn't had so much as a sniffle and has been in a fantastic mood. Go figure?!

One of things Sarah and I noticed today in particular was her vocal talent. She either needs to stop watching American Idol or she is trying to tell us she wants to go out for karaoke night. She has some serious lung capacity these days. The combination of vocals, tray kicking and her globe toy is enough for us to consider ear plugs. All joking aside, it is great to hear her making new sounds and having fun!

Mira tends to do a lot of hand-mouthing throughout the day, but today she would stick her hand in her mouth and was purposely making noise (see video below) which was something new for her. She was consistently energetic today in her chair (much like in the video) and was doing a ton of vocalization, all day long. Enjoy!

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<embed src="http://www.youtube.com/v/EoiRBXMv6bY&hl=" width="425" height="344" type="application/x-shockwave-flash" fs="1" allowfullscreen="true" allowscriptaccess="always"></embed>Marchttp://email@example.com