The Good, The Bad, The Ugly.

Hello friends. Been a couple days, so I must fill you in on what's been happening. So much in so little time!!!!

I am officially a minivan driver. I never in my entire life thought that I would be driving a minivan, but I am, and I am quite pleased about it. Not only is it practically new and we got it for a heck of deal, but I am just overall impressed by the car, of course, I had to add a few personal touches like my Beatles decal and peace sign, gotta make things your own! I cannot wait to see how Grace reacts when she sees the new car! I hope she loves it. We picked it out especially for her! Fellow Rett families, or anyone who is thinking of purchasing a new adaptable van, please visit atsmobility.com and ask for Ron. They were absolutely fantastic and the prices are unbeatable. They just simply care. Bottom line. It's hard to find customer service like that nowdays.

This is not our exact van (ours is silver) but I want to show pictures of the conversions:

I will post pictures of ours soon once we get some of Grace riding in her new van.

So in more recent news, I have tried to become more active in the Rett community and getting involved with helping out for the IRSF. I know that I am still fairly new to all this and certainly do not by any means have the answers to most of the questions others may have, but I have decided to try to help out in my own special way, the way that I know how. Politically. I have some buddies from my old political science days, I wish I was able to be active still with them, but nevertheless, glad I still have my contacts, but my buddy works for Sen. Saxby Chambliss and well, let's just say, he can help me out and get me to the important people : ) So, I am working on a proclamation for a Rett Day in the State of GA and I am going to work even harder on trying to get Grace to be able to have her picture taken with the signed proclamation and Sen. Saxby Chambliss or Governor Nathan Deal. Either would be just fantastic! I am pretty excited about getting this accomplished for Grace.

(Look at Grace Face, my favorite little nugget)

Lately I have been a bit discouraged on my role in Grace's life. I feel as though I am just a side line viewer and should have very little say or do in her needs and future. I know I am just a step parent, but I have all these new ideas and I just want to help. It is never my intentions to discredit any other persons view, I just always want to help out in the best interest of Grace. Recently, I suggested have a Tobii eye gaze machine to be introduced to Grace in her classroom setting, because I would like to see how she works with the machine, see if we can start a communication system with Grace. I know that we would all love the ability to communicate with her. And Grace!!! How awesome would that be for her, to tell us when she is hungry, sleepy, or tired?!?! I am sure she would love it. Before I could even put forth my facts, I was immediately shot down. Grace can't do that, she does not have consistent eye gaze, she only has 10% control of her head, she moves too much, and wants to see what's going on in the class room versus trying to learn on the ipad, etc. How about we work on what Grace can do??? Let's stop dwelling on Grace's disability and try to find things that work for Grace because there are things out there. This Tobii machine has proven to be affective with Rett girls. It has been used with girls who don't have much control with their eye gaze normally, but they want to focus on this machine. I just spoke with a woman through the Rett community, you know, her daughter is much like Grace, cannot talk, not much eye gaze, no head control, and she uses the machine fabulously! The fact of the matter here is this, these therapist and teachers at school are great, I appreciate everything they do for our children, they are amazing people. However, they do not know every aspect of our children's lives. We know their capabilities. Grace has more eye gaze and head control at home than Gregory, my 9 year old step son. My thoughts are that when Grace is overly stimulated, stressed, or too excited at school, she gets what I call 'squirelly'. She will shake about and move her head, and look about the one at everyone. That's just how Grace does things. But I strongly believe that if we consistently work with Grace at home and use these learning devices with her, we will all be amazed. I have read this amazing blog of Brooklyn's, I mean, you should really check her out, this little girl, she just does not let anything get her down. She uses eye gaze boards, does homework, and really challenges herself. I mean who are we hurting here by not challenging Grace??? She can do this, I know she can, and I really think she would love the opportunity and chance to try.

So, with that, just my thoughts for today. I feeling rather quote-y, so I'll leave you with my favorite.

"When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy.’ They told me I didn’t understand the assignment, and I told them they didn’t understand life."
- John Lennon

Tiffany

New Year, New Health Kick...

Alan and I both agreed going into this year that we would both start eating healthier, not just for us, but for the kiddos too. Not to mention, when you are living with type 1 diabetes like my husband, you can't afford to take too many risks with your health. Unfortunately for Alan, I am absolutely in love with all things pasta, especially since it's easy to cook, so I am hardly any help with controlling his carb intake and blood sugars. Nonetheless, we set out this year with a decent head to start on the weight loss strategy.

We went out to buy a new blender, Alan broke my previous one in a margarita making incident over the holidays. The blender we purchased is the NINJA Kitchen system pulse. It is pretty awesome, it comes with 3 travel size smoothie containers to take along with you, which is perfect for Alan and I for in the mornings. So far, I love this machine. We use it daily and it can even handle Alan's unnecessary roughness! I blend everything in mine from frozen fruits, and nuts, to kale and spinach. Definitely worth every penny we spent on it! It has really helped Alan and myself with cutting out the morning habit we used to have of grabbing a biscuit from our favorite breakfast shack down the street on the way to work in the mornings. Plus, some evenings after my workouts, I just don't feel all that hungry, and I'll make myself a shake for dinner and have that while feeding Grace. It's that wonderful! I am loving the convenience.

The plan that I started myself on for the new year is Jillian Michaels 30 day Shred. Let me just tell you, this ladies, is no joke. She is not nice. My legs, felt. like. jello. The first day after the workout, I felt like I was practically crawling everywhere around the office the next morning. I'm sure I was not a pleasure to be around either with all my complainging. It got easier though, there are 3 levels, and I am on level 2 now, still tough, but manageable. I have already lost 5 pounds, which to me is a big deal!!!

Alan started the Beach Body PUMP workouts and he seems to really enjoy them. I am really proud of him actually. He has been so dedicated to his workout and he hasn't missed a beat. His workouts come with a few different options, like ab workouts, strength, etc. We did a yoga workout together and we had a blast. It's fun to be healthy together. Alan's blood sugar has been lower than normal on the diet and workout schedule, so we just have to monitor that, but overall, it is pretty darn impressive!!

My only struggle with the whole workout bit is ofcourse finding the time. Where do you find the time??? Between going to work for 40+ hours a week, cooking dinner, having 3 dogs (HUGE dogs) to clean up after), taking care of sweet little Grace, and doing homework with Gregory, where do we find the time?? I am finding myself more and more exhausted and here I thought this workout business was supposed to help me with the energy levels!??!!


Tiffany

Ahhh, Friday.

Everyone always tells me I am wishing my life away, but there is always something so blissful about a Friday. I can be so tired and drained, but hey, at least it's Friday I tell myself!!!

So, Grace had surgery last night to remove her tonsils and adenoids, Alan and I were really skeptical at first, and believe me, he grilled the docs about it, but in the end, we think it's going to be for the best. Grace has had strep for the 3rd time in 6 months and I myself am just now getting over it. So I pray this will help give her relief and crossing my fingers she will eat better.

This weekend also brings another big thing we have been waiting for as well, our brand new adaptable van!!! We are so excited!! I know my back for sure is! I am so thankful that with Grace's new chair, we are getting the van just in the nick of time. If any of you mom's out there need a good referral to an adaptable van company with great prices, please contact me, I would be happy to pass along the wonderful experience we have had with atsmobililty company in Kentucky. They have been wonderful!

Another great referral that I would love to pass along are these great mums2mums bibs that we found for Grace. I am in love with the bibs. They are a bit on the high price end, but totally worth it. I buy mine from Amazon and I have them in most of the colors and let me just tell you, they last!! Plus, they catch all the slobber you can imagine without getting Grace's cute clothes messy. So check them out!

Here is Grace rockin' out in her's :

I am so excited about this blog, I know I am new to this, but hopefully I get the hang of it soon. I get so many great ideas from the Rett mother's blogs I read regularlly, I just hope maybe I can return the favor to others. I am so impressed by the amount of love and support that is out there, it has truly been amazing. Anytime I have ever had a question or concern, it was never hard to get an answer from someone who has been in my shoes before. So thank you to every single one of you out there, you may not even know it, but you helped me! So cheers, and here's to hoping maybe one day I can help you too!!!

Happy Friday my friends!!!



Tiffany

Welcome, Welcome.

Just a quick note to say hello out there and to really introduce myself. I am new to this blogging world, but I really felt not only is it important to be up to date with technology, but having a place to put thoughts out there and share ideas and news is awesome. So, let's get down to business....

I am newly married and loving every minute of it. That's right, you read it correctly, loving every minute of it. The ups, the downs, and the in betweens. He really is a catch to say the least. PLUS, he came with two great kiddos, that I have the pleasure of being a step mum to, Gregory, 9, and Grace 7. They are the best kids ever, I may be a bit biased....but it's true.

Gregory is brilliant, almost too brilliant for his own good sometimes! He is into so many different things that he keeps us busy! He can tell you anything about American military history, the sinking of the Titanic, and any war the USA was involved in. He loves science and has such a kind hearted spirit. Gregory cares so much about everyone's feelings around him and I think that's one of the many things that I love so much about him. That boy is really going to grow up to be something great one day and I am so thankful that I get to be a part of watching him grow into whatever that may be!

Now Grace, where to even begin about Grace. She is my little 'nugget' as I call her. Grace was diagnosed with Rett Syndrome when she was about 2 years old. I cannot imagine what her mother and father must have felt going through the diagnosis, the heartache they felt, they still feel. However, I can tell you now what a pleasure it is just to know this little angel. Grace is fearless, so funny, and absolutely beautiful. She is my joy and it is a pleasure to be her stepmother.

Now, my husband Alan, he's something. I won't put too much on here, don't want to embarrass him, but what I will tell you is he is a cross between Brad Pitt and George Clooney, if you can even imagine such hunkyness!!! In all seriousness, Alan keeps me grounded, lifts me up when I need it, and loves me at my worst. He truly is my best friend in every sense of the word, my love, and my soul mate. I'm very fortunate to all the joys he has brought into my life, they've made me a better person.

So welcome, welcome!! Here you will find my thoughts, quick wits, opinions, and favorite things. I hope you enjoy!!! Stay tuned for awesomeness!!!


Tiffany