That's right, with her own voice! Unfortunately I was not there. Olivia and I had just left for school, but this is how it went down:
Roger - Juliana, do you want water or chocolate milk? (He showed her the two options and she chose water)
Juliana - (After some time she chose Chocolate Milk on her computer)
Roger - Are you sure you want Chocolate Milk? (putting her yes/no buttons by her face)
Juliana - (pulls her head away from the buttons like she doesn't want them)
Roger (puts yes/no on her computer) Tell me yes or no, do you want chocolate milk?
Juliana - (looks away from computer, refusing to look at screen)
Roger - (stops asking questions and just gives her a minute. Notices that she is trying to adjust her mouth and lips as if she is trying to say something)
Juliana - (after several seconds of readjusting her mouth and lips just right) Yes.
Roger - (shock) Did you just say yes?
Juliana - (big nod yes and a smile)
It's like she had to prove to herself and us that she could do it. She is amazing and she inspires me every day!
It's days like this that continue to keep us fighting for a cure and encouraging everyone to give her a chance. We are so blessed to have so many friends, family, teachers, therapists, believe in her, and it's for these exact moments. It's the accumulation of the small things that make the biggest impact on our lives! Today we celebrate!
Yes, I will admit it, I am a Hunger Games nerd. After waiting for over one year for this movie, the day finally arrived!
This is Pam, and the leader of our Book Club that got me started on this very addictive trilogy! Here we are at the premeire taking a picture of our V.I.P. bands that Julie got us (thank so much again!) because there were no cell phones or cameras allowed in the theater.
I'm not sure what we are doing here. Pam is the only one that looks like she is shooting a bow. I look like I am shooting a dart and Barb a musket.
Second try, and yes, we still look like idiots!
And we couldn't leave without taking a picture with Effie!
This Sunday, major research came out in Nature regarding Rett Syndrome and Bone Marrow. Please go to the link below and read the information and more importantly watch the video. For all of you that have at some point donated to one of our many fundraisers, thank you! You helped fund this amazing project. This by no means is "a cure", but it is HOPE. It is a completely different route for them to explore a treatment or potentially a cure. We tell ourselves everyday that there will be a cure in her lifetime. And honestly some days (especially on the hard ones) I often wonder if I actually believe that or if I just say it to myself to make it through the hard parts. But to watch that video, I know it's true. I know I believe it with all my heart. So now friends I urge to to donate what you can. The scariest thing to think about now is that when the money runs out, so does the research. No matter how close we are to finding that cure. http://www.rsrt.org/about-rsrt/press-releases/bone-marrow-transplant-arrests-symptoms-in-model-of-rett-syndrome/#.T2_cisDdz6s.blogger
Join us for our annual Golf for a Cure on April 28 at Indian Creek Golf Club in Carrolton, TX. If you are not a golfer, we would love to have you join us for dinner. If you can't make it to dinner, buy lots of raffle tickets we have some really amazing prizes. Just click the link below, where you can purchase any of these options.
It's the little things. . . . Juliana is 5 1/2 and this weekend was the FIRST movie that she has ever stayed awake for. That's right, THE FIRST! I have often joked that we should get a refund if she falls asleep before the previews are over. Why, you may be asking? Is she in love with Dr. Suess or the Lorax? No. What's changed? Her meds. We have added a very small dose of Ritalin and it has completely changed our world. COMPLETELY! For those that don't know her well, Juliana used to spend most of her days asleep. She would take about naps a d ay. And if you ever presented her with anything challenging or boring to her, she would literally just "check out" and fall asleep. And there was no waking her up either. Since the Ritalin, she has stayed awake, sometimes taking one nap and sometimes taking 0 naps. She is awake, alert and in an awesome mood. She is actually LIVING LIFE and we couldn't be happier. Thank you Dr. Djukic, once again.
Juliana's PT had been urging us to get a scan of Juliana's spine. No one had noticed a significant curve, but since scoliosis is par for the course with Rett Syndrome, she wanted to get a baseline in order to track in the future. So we began to process of trying to get in with Scottish Rite, since of course, they are the leaders for this type of thing. It took awhile, but we finally got in. Great news, right. Wrong. . . The bad news is that turns out Juliana has a significant "S" curve as well as a "C" curve. It's weird how we never noticed it before and now it's all I see. I see it in the way she stands and even when she sits. How did we miss this. And then, to add insult to injury, we were told by the doctor there that there is NOTHING we can do to make it better or slow it down from getting worse. I had done some research before we went and I knew there wasn't anything really to fix it, but I had read that certain exercises and stretches could definitely slow it down. I shared this with him and asked what those exercises might be, to which he responded, "You have other children and other things in your life that require your time. Don't waste your time on this. It's not going to make a difference. It's just not worth it." I'm sorry, my daughter is not worth it???? Needless to say we will be finding another doctor. I don't blame him, he is merely not caught up to date on the research and the amazing things happening. Maybe Juliana can walk into his office again one day and explain it to him.
Today is one of those really hard days when I feel like Rett just slapped me across the face. It was nothing huge that happened. I guess some days you can deal with it and others it just catches you off guard. So we got up a little later than usual. Start with breakfast and meds. I ask her what she wants and I get no answer. Today she's decided that she will not answer my questions. So I threaten, "Ok, if you don't tell me, then I will choose for you!" Ooooh, that's a threat. Who cares, if I choose for her, who cares? It will still be something good, something that she likes, so what's the punishment? So we force down breakfast, and I don't know why she's not eating like she normally does. And then that bothers me. I am so tired of guessing! Maybe she's worn out from being at the zoo yesterday, maybe she has a head ache, maybe she has bad allergies, maybe, maybe, maybe. Just tired of it! Then Liv starts in. Poor girl, all she wants is someone to play with her. I can't tell you how it breaks my heart into a million pieces as she stands in front of Juliana with her yes/no buttons, begging her to play with her. Well today Olivia had cotton candy from the zoo and all she wanted was for Juliana to go in the playroom with her and eat the damn cotton candy. So she is literally standing in front of her with the buttons again BEGGING her to eat some and she doesn't respond. I go into the playroom later to find her crying because she really wanted her sister to eat cotton candy with her. Such a small request. And that takes me to whole other ugly place. The place where I imagine all the things they would do, the adventures they would have, the giggling they would do, and even the bickering they would do, if only Rett was not a part of our life. I know, I'm just having a boo hoo kind of a day. I will get over it and move forward because that's what we have to do. In fact, today we will face another hurdle. Today we have an appointment with Texas Scottish Rite Hospital to address her scoliosis. I have no idea what to expect. Prayers please for what I hope will be a great appointment!
Well, I have officially reached the age where I hate the zoo. It's sad to admit. I have always been a huge fan of the zoo, even when we didn't have kids, but now it is with regret that I say I will not be back for a really long time. There were several issues with this trip. 1. Why was it so stinkin' hot in Texas in March. It was so humid that it (a) put Juliana into a coma and (b) gave Juliana a perm. 2. Why did we think we could go to the zoo during spring break. There must have been a million people there. It was absolutely ridiculous. Here are some of the highlights from our day:
Really human-like Ape
Angelina & Olivia
One of those scary Lion King primates
And here are our babies. A lady that was leaving the zoo offered us the double stroller that the girls quickly jumped into. And yes, there is Juliana, still asleep. I swear she owes me $9!
Got to love the elephants
This was the highlight of the day. I actually got to witness this giraffe wedge it front feet apart so that it could actually reach the grass it was trying to eat. It reminded me of me, trying to get into a yoga pose or something.
Never knew this could be a problem for them
The lion - he actually roared!
Forgot what this was. I was just taken by how skinny his neck and face were.
And the finally and wait, I think I see Juliana's eyes half open!!!