Fall Update - November

We're getting a bike!! Shhhh ... don't tell Ellie... it's going to be a surprise! We've finally gotten Ellie approved for a bike that she won't be able to flip and that, prayerfully, she'll be able to learn to ride on. Luckily, we have a pretty awesome bike-shop in town! The owner there has worked his way through catalogs and different ideas to come up with a bike that he thinks will work for Ellie. I'm ordering it in the morning and hoping it will be here for Christmas! :) BEST part is that we got the bike approved as a therapy tool and it will be covered through her waiver. Getting things approved is next to impossible, so we're thrilled that they're covering this. We've been saving our respite money all year to go towards this. Figuring out a way for Ellie to ride a bike safely will be so worth the effort!


Now, simultaneously we're still working getting the speech device bought for Ellie. I got confirmation last week that the pre-authorization paperwork has been submitted to our insurances. That's the biggest step, getting the initial request and supporting paperwork submitted so insurance can approve or deny. If they deny, then we move on to appeal the decision and provide additional support for Ellie's need of the device. The device we're trying to buy is and EcoPoint2 with Tobii Eye Gaze technology. It's an amazing device with incredible potential to grow and expand to meet Ellie's needs. The only thing better would be eye-gaze on an Ipad!! Ipad's have the capability to use TouchChat HD which is an app. that allows kids to touch the image and the device to speak for the user. Sadly, they haven't mastered eye-gaze for ipad's yet :( The only disadvantage to the EcoPoint is that it's large, heavy and requires a tripod stand to be used. Sooo, it's just a little more to haul but more importantly it only lets her have the option to "talk" when it's set up and she's at a chair/table setting. In spite of the little disadvantages, we're thrilled with the doors this device has already opened to Ellie!


Ellie's doing so well in school! She loves seeing her little friends and they're so sweet back to her. Ellie regularly blows kisses to her teachers when we leave school in the afternoon, which assures me that she does enjoy being there and has developed relationships with her teachers. I'm so thankful for such wonderful women with hearts for special kids. I continue to be amazed that Ellie can bottle her aggression and save it for Eva at home. (Poor Eva!) We've seen an increase in aggression at home, which is tough. Some nights I feel like I need cages!! Eva's finally to the age and size that she feels confident enough to fight back. We always thought that after she clobbered Ellie back a couple times the aggression would simmer and she'd be more careful about attacking. Unfortunately, not so. The trouble is that Ellie's aggression is starting to rub off on Eva, it's tough trying to device a parenting plan that differs so greatly between kids for the same behavior. We're struggling through this phase, praying that it passes quickly and that Eva learns new tactics.


I know that there are days when I underestimate how hard it is to be Ellie's sister. I'm so proud of Emma for being open and honest with people about Ellie. I know that because of our unique situation, Emma has a lot more responsibility than most almost 8 year olds. On the days when she goes out of her way to modify activities so that they can include Ellie, it melts my heart. On the days when she's lost her cool, I have to remind myself that she's only turning 8 and how remarkably well she does considering. Eva continually amazes with with her forgiving spirit. I kid you not, she can take a slap to the face and 2 minutes later kiss Ellie when she falls down. Repeatedly, Eva is the one to ask me if Ellie can get up yet, even though she was the one that just got slammed into the cupboard by Ellie or shoved onto the slate floor. Eva is how I define mercy. I assure you God knew I needed this loving, forgiving, spunky, gum-chewing 3 year old!


So, everything else updated, now on to the intense Rett Syndrome stuff.  Over the course of the past few months, Ellie's OT has continually been concerned about Ellie's loss of fine motor skills in her left hand. What was a fine thumb to pointer pinch to pick up items gradually turned into a full hand grab. The left side, not being her dominant, has always been a bit behind her right and it still is just to a different degree. This is one of our biggest concerns right now and something that I sit and think on. Last week Jen (our OT) told me that she's going to focus on "gross fine motor" at this point. What that means is that she's going to focus on creating success for Ellie with that larger grasp rather than forcing her to do the fine motor picking up that she struggles with. She certainly still has the ability at times, with the right motivation, it's just that overall her fine motor skills have deteriorated. What used to be a very nice hand-grip on her silverware, is now fist hold, making it harder for her to control her spoon or fork and nicely get it to her mouth. We're seeing her resort to hand-feeding a lot more often than she did just 3 months ago. We know we're utterly blessed to have a 5 1/2 year old daughter that still walks, RUNS even, that can feed herself normal table food, and who can verbalize sounds and a handful of words. We're blessed that Ellie so quickly figured out eye-gaze and that at some point in the next few months, Ellie will get a "talker" that will allow her to have a voice!


The other struggle we're having lately is seizures, or at least they seem to be seizures. They're occurring anytime that Ellie's woke up from a deep sleep. She appears 'out of it' and different parts of her body shake. Her eyes pop wide open and roll up, legs and arms go stiff, she arches her back and her head is pulled back, most often her fingers look like she's typing or playing piano as they jerk and flinch. It's probably the toughest thing to watch. I've seen it dozens of times and still every time I panic inside. I avoid waking her but there are sometimes when just the slightest noise or movement causes the reaction. It makes me so glad that we have an appointment with Dr.Khwaja next month. We're really needing some peace about these events.


Our appointments in Boston were rescheduled until December because Dr.Khwaja needed the month of November off. The schedule shift actually worked better for us, since Nicholas will be home for the other two girls. Our Miracle Flights as well as our lodging were able to change our reservations without extra charges - another blessing! We're praying Dr.Khwaja can give us some answers about the fine-motor losses as well as the apparent-seizures. We know we'll be in good hands with Dr.Khwaja and his staff!


I can't believe it's already November and Thanksgiving is in 2 days. Not sure where this year went or how we've survived it at all. I know I never could have made it without friends lending their shoulders and words of support and love or without God to carry me when I was just plain too crushed to walk. To think that 7 months ago we got the call that Ellie had Rett and to think about what we've learned and all the things we've seen change. I know God uses "stuff" on this Earth to mold us into the people he wants us to be. If we're confident in our own strength and ability, we aren't as easily used by Him. This season of life has changed Nicholas and I, our entire family really. I turn 30 this weekend, which just is kind of the cherry on top of 2011. I don't feel old, I feel seasoned, refined, broken, molded, driven, and imperfect with character like an antique dresser.


I pray you feel blessed and loved this Thanksgiving. We all have so much to be thankful for.
~Angie