Tuesday, July 22, 2014

Fragile X Awareness Day 2014

July 22nd is National Fragile X Awareness Day! I love this day because my Facebook explodes with facts about Fragile X and pictures of people across the Nation wearing green or a Fragile X shirt/hat to spread awareness and support. I hope that all of my family and friends join us in spreading that awareness.

This day to me is about spreading awareness so that our children can be accepted for who they are. Their quirks, flaws, flapping, squealing, hyperactive, repetitive, beautiful, loving, kind selves. Each day we have struggles and each day we have new accomplishments!

Fragile X has changed our lives in very big ways. It has definitely taken us down roads we never imagined. We have meet wonderful new friends and families all over the US because of Fragile X. We have been supported and reached out to from our hometowns, families, and friends in ways we could never have imagined.

Here is some of my family wearing their green and Fragile X shirts today:








Help spread awareness with us today! Don't forget to tag me in your picture so I can see them!!

X

Psalm 139:14 "... I am fearfully and wonderfully made: marvellous are thy works...

Mom's Life --- I wanted to add this today because at almost the end of the song they sum up motherhood in 7 words. And it is a beautiful depiction of what life is really like most of the time :) Enjoy!

Thursday, June 5, 2014

Lessons in thankfulness....

Wow! The past 4 weeks we have traveled to somewhere out of state for at least 2 days every week!!! I have been exhausted.

This week Dalton and I went down to Vanderbilt to have his soft palate checked out. They said that everything is okay structure wise but it just isn't strong enough to make the correct sounds all the time. But that will just be something we have to work on. We were just happy that NO SURGERY is required for that. That was our main concern.

The day before we went for his appointment, we went to Dollywood. I debated on whether or not we were going to take Arizona with us on the trip because we weren't coming back home after Dollywood. We stayed with a friend in the Knoxville area. I didn't know what we would do with her while we were in Dollywood but I really wanted her to go to Vanderbilt with us. So, I decided to take her, well more like I felt like I "really" needed to for some reason. She got to stay in Doggywood while Dalton and I played (it was only for like 3 hours).

*I have to put a quick side note here so you can get the full picture* Arizona is trained to be in the "heel" position on my left side so when she is tethered to Dalton he walks on her left side. Therefore as we were leaving the building he was closest to the road. Even though he is connected to Arizona he still holds my hand for some reason. I guess it's just what he is used to (I'm not complaining just stating facts).

While we were in the office Dalton had gotten some stickers for being cooperative and had put them on a piece of paper to make a "picture." We were walking back to the parking garage and a big gust of wind comes and takes the picture out of his hand and into the road (which was crazy busy with traffic). Well before I even knew what had happened I felt the leash tighten and tug and look back to see Dalton bolting for his picture. Luckily the strap that connects Dalton and Arizona isn't long enough that he even got off the sidewalk.

But in that moment, I thought if she hadn't been there who knows what would've happened. I like to think that I could have grabbed him in enough time that he couldn't have gotten in the road but there's no way to know that for sure. After I had the two of them back in the van I stopped for a moment to thank God again for all the people that made it possible for us to get Arizona and for 4 Paws giving her the training that she has to help me keep my baby safe.

Sometimes 2 hands just aren't enough. Again I want to say a huge "THANK YOU" to all those who helped make Arizona a reality for us. You all have no idea how much it means to our family!!!

X

Psalm 107:1 NKJV --- Oh, give thanks to the Lord, for He is good!
For His mercy endures forever.

Friday, May 30, 2014

Mrs. Rogers Neighborhood....

I was supposed to do this yesterday and I'm at a conference and I got caught up in activities and didn't get a chance!!!


We are so excited to announce that Cindi Rogers first book, Becoming Mrs. Rogers is now available on Amazon.com at the link below.  This book was a labor of love
for Cindi, as well as her husband, Chris.  The process has been a wonderful learning experience and going forward will continue to require more learning.





This book is a memoir of sorts about her life (and Chris') in dealing with
the birth and subsequent diagnosis of fragile X syndrome for their two boys. The timeline travels from birth to present day and covers lots of different issues like school, behavior, therapies and day-to-day life.  It will take you through some downs and eventually some ups, only to come out with moments of joy and hope.  It was an emotional journey for me while writing it, for Chris while reading it, and we hope for you, too. 

We also hope that you might consider reading it, and/or sharing it (forward this e-mail if you like) with others in your life that might benefit from such a story.

Buy here:



Tuesday, May 27, 2014

Oh the spills

I'm sure that most moms can relate to this ... But we have an unreasonable amount of spills in our home. And I much as I would just LOVE to blame it on the kids the truth is I spill probably 3 times the amount of stuff that they do.


I start running behind and get in a rush then I end up spilling everything I touch especially in the kitchen. Lately I feel like I have been in a rush almost every waking hour! HA! Then I spill something, this evening it was a cup of Baja Blast mountain dew, and get even further behind than what I was to begin with.


This evening I could hear God saying "Brittany slow down!" And yes he was stating it with an exclamation mark :) Sometimes we get caught up in the hustle and bustle and we wish days away. But in the grand scheme of things most of the stuff doesn't matter and these babies won't be babies forever. They will be grown in the blink of an eye.


So I am trying to remember to slow down and savor the little moments. Whether its Payson wanting to sit in my lap as I type, or Dalton wanting me to watch a cartoon with him, or Nick wanting to sing Patty Cake for the 20th time in the last 20 minutes. Each moment is a memory we will have together.


So tonight forget about the laundry (I assure you it will still be there tomorrow), let the dishes stay in the sink a little longer (or use the dishwasher!!!), don't worry about vacuuming, sweeping, or mopping because it will be just as sticky and dusty tomorrow as it is right now. And just enjoy the little moments that our lives are filled with.


X


It Won't Be Like this for Long

Friday, May 2, 2014

Leaps and Bounds

I am not sure who came up with the idea that all little girls were sweet, bow loving, dress wearing, petite little ladies. But Payson has decided that she is going to single-handily destroy this myth!




All that curly hair and the blue eyes are just there to distract you while she plots her next adventure. She can wrestle and be as rough and tough as Dalton. She does tend to cry a little more when she gets hurt but it's only momentary. She has little to no fear of just about everything exception of horses.




So I tell you all this to tell you what happened in our home this evening. Arizona's kennel is directly behind the center section of our sectional couch. Payson and Dalton both were climbing onto the kennel then sliding down the couch cushions. I had told them repeatedly to stop. Dalton did finally stop but Payson didn't.




I went to get her down and put her in time out and when she saw me coming.... wait for it.... She stood up on top of the kennel and took a flying leap completely over the couch and landing on her bottom about 3 feet from the couch. I was like seriously child!




She will for sure be the cause of the end of my sanity.


X


It Won't Be This Way For Long

Tuesday, April 29, 2014

You look like you have it all together....

Someone told me the other day that I seemed like I had it all together. While I would love to believe that this is true....the good Lord knows better.


I have a faith in the Lord that allows me to put a smile on my face and believe whole hearted that he knows all about the reasons why things are the way they are in this life. But I know that one day it isn't going to matter how life was in this world. He gave me all 3 of my children for different reasons.


There are days when I get down and out or super frustrated. Days when I want to look at the people who are staring at us in Wal-Mart when we are struggling and punch them in the face instead of smiling at them like I have no idea why they are looking at us. I have days when I would like to burn Fragile X to the ground if it were possible but it isn't. When I see other children who are Dalton's age and they are able to be in a General education classroom, or able to play sports with their peers, or understand why they have to go to a doctor's office and can tell them what hurts, the sting is still there deep in my heart.


So, I've learned not to dwell on things that are out of my control and focus on things that I can control. I can make sure that get every possible therapy or help that they need. I spread awareness and education every possible opportunity that I have. I advocate for my children when necessary. These are things that I can control while here on this Earth. So I'm determined to do all those to the best of my ability.


The great thing about God is that he doesn't expect us to have it all figured out. He will never leave us nor forsake us. We just have to know that when we can't walk along this path on our own he is there to carry us.


X


Amazing Grace (My Chains are Gone)

Monday, April 28, 2014

No use crying over spilled milk....

Sunday we enjoyed a great day at Dollywood! The kids had a blast. We were really impressive with how well they handled waiting in lines, the crowds, and noise level at times! We used going as incentive for Dalton to be good at school. I promised him if he was good for 3 weeks then he would get to go.


Then we came home. Well the first thing I notice when we get home....NO MILK!! I don't know about your all's house but in this house that is a tragedy to my children. So I turn around, leave the house and go get 2 gallons of milk. I get back home put away one gallon of milk and put the other on the counter.


I pour 2 glasses out of the gallon for Nick and Payson. However, instead of putting it away in the fridge I set it on the counter for a second to do something else.


Payson comes back and sees the lasso (which had been put up because they try to drag each other around with it) on the counter and tries to pull it down. However she only accomplishes knocking pretty much EVERYTHING else off the counter PLUS the gallon of milk. Jug busted and milk went EVERYWHERE. Of course the kids then saw a slip and slide in my kitchen (at one point or another in the clean-up all 3 of them fell.)


Sometime days I feel like we are walking around on milk on a tile floor. Slipping and sliding every which way just trying to find our footing. Sometimes we get it wrong and fall back down again but every now and then we find just the right spot to step that steadies us back out.


X


Free To Be Me



Friday, April 25, 2014

Let me explain...

I decided after my earlier post I should probably take a little more time and explain the way things played out.


The first FX test that we did was done by a company called JS Genetics it was a free test done by mouth swab. We met a representative of the company at the Fragile X Conference we attended 2 years ago. They had just gotten some type of government grant to do the testing for free. They sent the results to our pediatrician at the time and they relayed to us the results. I had never seen a physical copy of the results until a few months ago.


The reason we requested a copy of the results were because at the time we tested Payson my parents were also tested to see who carried the gene. It was my dad and we were told the results for him we were under the impression that he too was a carrier. He was going to take part in a research study for carriers so my mom had to get a paper copy of his results. When she received the paper copy we discovered that he is not just a carrier he actually has Fragile X Syndrome. He is simply not affected by it for some reason (no worries that are going to use him as a guinea pig to figure out why :) and he isn't the only one in the world but it is way less common).


So that day mom went in and requested to receive a copy of Payson's as well.


The pediatricians office was going by her repeat number when they told us she was a carrier which on the results they were sent her repeat number showed just as greater than 150. However, once I received a copy of the results and looked at the description of the results things got a little complicated. The description made it sound more like she had it rather than that she was just a carrier, because it stated that she could be effective in cognitive or behavioral way (it said this with big, complicated medical terms thrown in there).


Thankfully, the place where dad was going to be part of the research study offered to redo both of their test at no cost to us.


Yes I am mad because they didn't get it right the first time, yes I am glad that we now know for sure after a few months of things being up in the air, and yes I am sad at the same time for my beautiful daughter. However, girls are not always as affected as boys are and until she gets older we will not know for sure how she may be affected by it (that's not to say that they can't be).


I'm not sure how it was wrong the first time or what the issue was but I know that God has a reason for everything even when we cannot begin to fathom what it may be. He will walk with us now just as he always has.


X


Just Say Jesus


Praise You in this Storm









Sometimes they get it wrong...

It's been a long time since I posted last. We have been crazy busy around here. Dalton is getting ready to have surgery again in a week or so on his ears. Everyone say a prayer for us has we head into another one. He also has to have his tongue clipped because they have decided he is tongue tied 6 years in. I asked them about this when he was like 2 and they were positive that he wasn't. Well they were wrong. He also has to have an appointment at Vanderbilt because there is also a problem with his soft palette.


We also found out that Payson's original FX test results were wrong. Payson has Fragile X Syndrome as well. Sometimes they get it wrong.....


My faith in the medical field quite frankly. I know not all medical professionals are incompetent but sometimes they get it wrong and I truly believe we as parents should be free to question them and get second opinions. We are dealing with the news of this.


X


Jeremiah 29:11 NKJV -- For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.

Tuesday, January 28, 2014

Couponing 101

I have had tons of people ask me about couponing so I decided I would put my knowledge out there for everyone!


First I wanted to tell you guys a little about why I started couponing. The most obvious reason to save money. But with 3 kids our grocery bill was getting out of hand! We are talking $500-650 a month and being a one income family it was just too much!! Plus because of medical bills and other expenses we needed to cut back somewhere so I decided to give couponing a try and I am so glad I did! I am positive that you will be too!!!


SO the first step to couponing is getting the coupons!
  • The Sunday paper is the most common place to find coupons. You need at least 3-4 copies! Here is a schedule for 2014 for the newspaper inserts: http://couponingtobedebtfree.com/2014/01/12/2014-sunday-newspaper-coupon-insert-schedule/. Most people will tell you to get a subscription but I know that here in my area it is more expensive for me to subscribe then to go down the road and pick a couple of copies up for myself. I also know that Wal-Mart's copies of our local paper are about $0.06- $0.08 cheaper per issue than anywhere else.
  • You can also print the coupons online at several sites, some of my favorites are
    • coupons.com
    • smartsource.com
    • redplum.com
    • hopster.com (you earn points when you redeem their coupons which can help you get higher value coupons the next time)
    • befrugal.com (this website has more of a database of coupons that will send you to different websites to print)
    • Some stores have their own coupons that you can match with manufacturer coupons (called stacking) to save even more. CVS, Walgreens, and Target have these most often. (If you want a run down of all the coupon LINGO here is the link to one of my favorite sites http://thekrazycouponlady.com/beginners/#day5. I can't break it down any better than they do!)
  • Something to remember about printing from the internet is that you are usually limited to 2 copies per computer. If you have more than one computer utilize them all. You can also print from an iPad or iPhone if you have an HP wireless printer.
  • If you aren't opposed to it you can also check your local paper only recycling bin. You will need to check your local laws to make sure this isn't illegal in your area. In Tennessee it isn't illegal unless otherwise posted on the dumpster, the bin is guarded or fenced in, or it's a private bin.
  • Ask your friends and neighbors, if you know someone who gets the paper and doesn't use the coupons, it can't hurt to ask.
I hope this helps everyone get started. Stay tuned they will be more to come. If you have any other inventive ways that you gather coupons please let me know!


I added Casting Crowns-Courageous below. I just love this song and the movie! God bless!


X


Casting Crowns-Courageous

Friday, January 24, 2014

Oh January

I haven't written in a while. It has been a busy couple of months for us. From getting Zona, then Dalton having surgery, Thanksgiving, Christmas, and now January. Which is also a full month for us with birthday and our wedding anniversary. It's also our diagnosis anniversary this month. It's been 2 years since we received Dalton's diagnosis!



Dalton is doing wonderful at school. His behaviors are decreasing and his work is increasing. He is starting to talk so so much more and the things that he does say are becoming much clearer!

Payson has also had to start speech therapy this year which she is improving too. She just does EVERYTHING Dalton does or says. A lot of the things that she does say are modeled after things he says but the therapy is helping.

Nick is doing wonderful. He just turned one and is hitting a new milestone everyday it seems. They are all three growing up on us way too fast!

Now that I have watched Payson and Nick hit milestones, I see so many things that we should have questioned when Dalton was little. But, honestly we just didn't know better and at the time somethings seemed so small that how could it possibly add up to anything big? Now I know the answer to that question.

Our diagnosis anniversary is a bittersweet thing for me. It is good because we finally got an answer after of 2 years of searching but in the same instant it changed our lives forever. Mostly in a good way, we have meet tons of families that we never would have before and has lead us down paths that we never imagined we would have to travel. But it has made us stronger because of those paths.

I am still couponing and am starting to see real results from it which is extremely exciting for me! We have quite the stockpile starting to form (which my husband is not too thrilled about because it is taking over his "man space" in the basement and under the bathroom sinks!).

X

I picked this song this time because I remember a time in the beginning of our diagnosis when everyday seemed impossible and sometimes the only thing I had to say was just His name. His name is more powerful than any words we could possibly muster on any given day!

Just Say Jesus-7th Time Down