This blog entry may sound a bit scattered, but lately that's exactly how my mind has been operating. I swear my mind has literally been the twin of NYC - the saying goes "the city that never sleeps", constant noise, constant movement. My mind has been just that! Like Google with a million tabs always open, never shutting down always searching for answers.
So on March 23, 2015
We entered the beginning of a new chapter in our life. Hannah went to the Orthodontist and completed the entire process of getting braces, and a bite plate, and chose 4 different colors, to go with the theme of easter. She did amazing! She beat everyones expectations! She looks beautiful, and she has taken on the responsibility full force as well! After every meal without reminders, she is right in that bathroom saying I have to brush my teeth! Another thing I wanted to update everyone else on, is we have a neurology appointment coming up on April 10th. We believe Hannah is experiencing seizures again. She has been seizure free since she was 6. When she was 2 she was diagnosed with Grand Mal, and Petit Mal seizures and was pretty much having active seizures until she was 6, and then she outgrew them, and was off of all medication. Well now the scariest part has returned. I always knew in the back of my mind that one day they would, just never knew when. The type of seizures she is having is the Petit Mal seizures. The only thing we await now, is of course confirmation, which more than likely would be a long term monitoring test because we have attempted the standard EEG test, and they were inconclusive because Hannah kept moving, or would pull the prongs off of her head. The other test is a sleep deprived test, and well because Hannah does not get "sleep deprived" like ever! She requires sleep medication to sleep. Her brain does not register the typical sleep pattern that we all would usually register. Therefor she doesn't get sleep deprived. She could literally stay up for days on end!
Another thing huge is, Hannah has been referred to Make a Wish Foundation , and on 3/27/14 her Geneticist filled out and signed all the necessary paperwork and faxed it all over, and now the next step continues! The realization that our daughter has been accepted to Make a wish, is yet another hard pill to swallow. Yes of course it's wonderful! We will finally get to see Hannah be the kid she has longed to be, and be the happiest we have probably ever seen her be, around all of her favorite icons, and characters ever! Hannah is really into Buzz lightyear, Cars, Woody, Jesse, a lot of the boy themed things. I still sit on the thought that one day I will get my princess girl out of her haha! No pressure Hannah, really we have lot's of time. I love you unconditionally regardless <3
So an important piece I should also add, is during my research, and working with the wonderful team Rare Science I was referred to a Dr. Michael Kruer who is a pediatric neurologist also part of the Kruer Lab and is currently studying SCAR-9! Talk about a needle in a haystack, since Hannah one fits the pediatric category, two is the only patient currently in the US right now diagnosed so basically if he wants a patient, he's got one now, and well we found him!! Miracles actually do happen!! He's located in North Dakota. Not incredibly far. So far I have sent him all of Hannah's genetic testing medical records, and have been communicating either by email, or by phone, and he is eager to work with us, now the next step is to travel. Waiting on that next call to discuss that in further detail.
Okay, so we are also getting the word out via social media. Hannah is on youtube, I am learning all about Twitter, and Instagram, Google +, along with this whole blogging fun lol. While on Twitter one day, this live chat began, and I decided to join in. I had no idea just how fast, and involved Twitter actually was. I also didn't realize how noticed I actually would become either. Who would have guessed. Now we are working with a wonderful woman who is a graduate student in a Science Writing program at Johns Hopkins University, and is interested in writing a story about our daughter's condition and our struggles as parents and advocates.
Also still while this is all going on, we are still continuing to work with Rare Science, and I am awaiting out final draft of OUR STORY to be written, and then it will be published on their site. Once that happens, I will inform all, and you are more than welcome to take a look at the wonderful work they have put together!
Even though I feel everything is still moving very slow, and we still haven't uncovered any answers to our daughters condition, and haven't found any other families. Also since publishing my very first entry to our blog, it shows there has been over 1100 viewers, and it's a bit depressing that we haven't recieved any feedback, nor any comments to our blog. I mean wouldn't you think someone, somewhere around the world stopping by, reading such information would say something?? It kind of is making me loose hope. How should it make me feel? ok, well this is still all new to me. I'm thinking I should update a bit more often, rather than sounding so jumbled and cramming it all into a single update. Sometimes it's just hard to get my own thoughts clear enough to leave my own head and out for the world to know it as well..
Hope everyone enjoys the slideshow of Hannah Monet's best moment's~
Happy Easter everyone 2015