Tuesday, November 18, 2014

2 months later

     It's been two months since going back on the Vimpat (can you believe that? It does NOT feel like it's been that long!) She has not had any seizures at all since going back on the Vimpat - so I guess it's safe to say that medicine is definitely helping. I'm still interested in coming off of the Keppra since that didn't seem to help her seizures at all when she had some back in September - but we can't come off right now and I'll get why that is a bit later.
    Since the last post Abigail has been to Florida (DisneyWorld), New Jersey, and back home. There's been quite a few exciting advancements we've made in potentially furthering her care. First off, we got Abigail in for a visit at Shriners Hospital for Children up in Salt Lake. That's where a lot of this good stuff got started. All thanks to our Occupational Therapist from Early Intervention for getting us the referral. (I've since learned that she used to work at Shriners and is beloved and praised by all that I mentioned her name to).
      On Wednesday of this last week, Early Intervention came through with a cool new stander that we can put Abigail in. She has had standers in the past but they have been "supine standers' where she stands up with the support being on her belly side - but she couldn't ever keep her head up in those very well..she would always throw it backwards making it harder for her to breath. She hated those standers - from the moment you put her in them she would fuss to no end until the moment you took her out she would be just fine. This time we have a "prone stander" where the support is against her back instead giving her head a place to stop when she throws it backwards - and it can't fall back either. So far she has been in this stander 3 times and she doesn't fuss until she's done standing! I guess Taylor put her in it the other day and Abi fell asleep in it! That's funny! Needless to say, she doesn't mind this one as much as the supine standers so we are on the right track with this one!
     Yesterday we got Abigail fitted for a wheelchair at Shriners. A little while back we were able to get Abgail in to see the PT and OT at Shriners and got her some hand splints to help with her thumb strength and ankle braces that are fitted right to her feet which is all so cool and exciting but, I cannot tell you how excited I am to get Abigail in a chair. After seeing what she looked like in one yesterday I am so very pleased and March cannot come soon enough. (That is about how long the whole process takes from getting the approval through insurance to getting the wheelchair built and all that.) She was sitting up so straight and strong in the chair in the office, she looked like such a big girl! It gives her support in all the right places but makes her work just enough to keep her head steady. She sat in the measuring chair (a chair that simulates a wheelchair but has measurements on it so they know what size to build her wheelchair) for about 30 minutes with no fuss, and she could have gone longer! It just looks so right and she seemed so comfortable. The chairs we have here at the house (the feeder seats and all that) are so nice to have around so that she isn't always laying down, but they are just lounge chairs for her, they don't make her work and she can't sit straight up and down in them or she will tip over...I'm just ecstatic to have it all. We placed an order for iris model of the chair in candy purple. I think it will be so fun! And then today we got a call saying that her ankle braces are ready so we set up an appointment to get those final measures and fitted correctly!
    We also got Abigail paired with a runner from the group " I run 4 Michael". It's the coolest little program where a special needs person gets paired with an able-bodied person who dedicates their runs and races to that SN person. It raises awareness for the disorder, helps connect people, and gives the other person a reason, a purpose, and motivation to run. We got paired with Ms. Amanda from South Carolina. She seems like a doll and has already put in some miles in honor of Abigail. It seems like a win-win! I'm even thinking about becoming a runner for someone else's Special Needs. You should check out the group on Facebook, it's really a neat program ... Margo - you should sign up to be a runner too! I bet Owen could do it too! How fun would that be?
     But of those all those extremely neat things, here is the absolute neatest. The reason we can't come off of the Keppra yet is because Abigail is going to get in on a medicine study at the University of Utah. If you remember, back in September Abigail and I had a weekend we will never forget in Colorado. We were able to meet and mingle with other families who children have the same disorder as Abi, along with the specialists working on their case. Abi and I made so many great friends that weekend and learned much more than I imagined I could about her disorder. Families and doctors weren't the only ones that were there though. There is a company from Europe called GW pharmaceuticals..they sent some reps over to be at this conference as well...but not really just any reps - the HEAD guy over the company and the chair for the drug Epidiolex (epi - 'dye-ohl - ex) was there with 2 other reps. -- Just So you understand - Epidiolex is a pharmaceutical version of Cannabis oils that all seizure families are trying to get their hands on. It's the exact same thing as the cannabis oil from Colorado with the exception that this company was able to get ALL of the THC out of the extract so it is 100% cannabis. This 0% THC was able to get FDA approved to study in America. ((Some people/research says there is a synergistic effect between the CBD and THC that has to be there in order for it to work most effectively. The guys at GW say this is only a claim made because they haven't figured out how to get the THC completely out.)) - neat fact - the guy explained to me how he got the name for the drug and the "epi" comes from 'Epilepsy' - the "diol" comes from cannabiDIOL - and the "ex" comes extract - it's an extract from Cannibidiol for epilepsy -- sounds fancy, but that name is exactly what the drug is! How perfect!
     Well,  I got to talking to these guys without really realizing who they were but soon found out that one of the reps is from California and knows Abigail's neurologist by name. She was excited to find out that Dr. Sweney was our Neuro in Utah. They then told me there is an Epidiolex study going on at the University of Utah - Dr. Sweney had told me before they were trying to get some sort of study on the oils out here but that is all I had heard from him...and that all the spaces were full for the study. Well, about 3 weeks after the KCNQ2 Summit in Denver I got an email from Doctor Sweney saying "The guys at GW pharmaceuticals want Abigail to get in the study here - are you interested?" They asked for Abigail BY NAME to get in on this exclusive, already full study being done right up the street on the exact extract we've wanted to try....OF COURSE WE ARE INTERESTED! Right now they are working on amending protocol with the board to get Abi added to the study..they are amending protocol JUST FOR ABIGAIL! How cool is that! Part of the study rules is you have to have had no medicine changes within 4 weeks of starting the study - which makes it impossible to start changing the Keppra now - It would take too long to get her off of it then we'd have to wait another month to start in on the study..so we just wait and keep her on the Keppra a bit longer. Our doc says that doesn't mean that we can't come off once we start the oils if we see good enough results - so I'll just keep my fingers crossed for that.
     About a week after I found out about this whole study prospect thing I got an email from Realm of Caring (the company in Colorado in charge of Charlotte's Web) stating that they have to push back their shipments of the oils due to - who knows what really - but there's some sort of something holding them back and they are working on the kinks and will keep us posted...How lucky is that? I get in on a closer, cheaper, more black and white legal study only to find out the other oil isn't available anyway. Like I said, right now we are waiting on a protocol change so we are still NOT on any oils yet - we do have the 'red' permission card to have and administer the oil, but we are not on it yet. We are still waiting - but I'll let you guys know AS SOON as we do!

We've got some really good things happening over here at the AbiNormal household: Still seizure free, we've got a new running buddy, new ankle braces, new hand splints (to help thumb strength for gripping), wheelchair coming soon, a stander, a  CBD oil extract study...lots of good things.

Abi's head strength seems to be on the up right now.  She just got over a week long sickness that kept her pretty raggedy and hot and uncomfortable. She seems to be feeling much better now though and seems to be getting back to her happy, chatty, sweet, little self.  She has, though, started those pesky breath holding spell things again when she get really angry or tired. They are starting to seem more "seizurey" but I still don't count them as seizures. They aren't happening as often as they were when she was having them before, but they do seem to be more intense at times - like, before she would hold her breathe 4 or 5 times in a row but now it's just one big one and then she's calmed. We haven't changed anything in her meds for 2 months now so it couldn't be that. During her sickness she did stop taking Pediasure and would only eat from the spoon - I guess that's good and bad - I do worry about her getting enough calories, but I guess if she isn't withering away and not complaining about hunger pangs then it can't be that bad, right? I don't know why she stopped taking the bottle, but I initially think it had to do with not being able to breath through her nose to eat. She is still slightly stuffy so that still may be the case why she still won't take Pediasure. We are also speculating that her throat might still be a little sore or something, but where she can't tell us it is just that, speculating. Like I said, as long as she is still eating and doesn't loose too much weight or seem to be starving then we'll just let her do her.

Who knew so much could happen in just 2 months? Max is 7 months old now and has started to crawl - like hand and knees, off his belly crawling. He's been scooting for quite some time. He's been pulling himself up on everything and anything he can pull himself up on to for a little while now, but now he's able to move around better while he's up - he's not just stuck standing in one place. He babbles and giggles and squeals and I love every second of it. He LOVES to eat - anything you put in front of him he will devour - we have found only 2 things he doesn't seem to enjoy very much - The 1st is mixed berry flavored yogurt melts - he love the strawberry ones though. And the 2nd is cheese puffs - not the cheetos kind, but the chester kind - or something. He doesn't like the cheese flavored, but he LOVES the butter flavored. Tonight I gave him some bananas and he went to town on those too. He eats from the spoon like a pro and even grabs the spoon like he wants to feed himself. Although he's pretty much almost mastered getting whatever is in his hand to get in his mouth, he's not as good with the spoon - he still tries to feed his nose or eyeballs at times. He's one of the funniest kids to watch - he is so mobile and so interested and so extremely expressive.
     He's really good with Abigail too. Sure, there are times he pulls her hair or slaps her in the face, but obviously it's not intentional or malicious in anyway. He seems to really know she's there and be drawn to her. Abi definitely reacts to him crawling all over her, but doesn't seem to mind too much. I love that she's getting that extra stimulation from a 'peer' if you can call it that.

I'm head over heels for both of my little babies - and am excited about both of their futures. Abi has some really cool things coming with potential progression, and well, next for Max is walking! Here's to growing up.

Thanks for Stopping By!
This is AbiNormal

Pictures to come soon!

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