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Some of you have been asking how you can help. An account has been created to help with William's medical expenses, and this is an easy way to contribute using PayPal or credit card.

Benefit and EEG/Status

Benefit and EEG/Status

 

 

William and I (Braley) were in the hospital and unable to attend the Rollin' Razorbacks Benefit held Thursday night. We did get pictures and running commentary throughout the game. This video, made by William’s classmates and posted on facebook and YouTube, was shown at half-time.
 https://www.youtube.com/watch?

There was a big turnout, and it seems like everyone had a good time!  The spectators learned about the rare disease, Batten Disease and about William's Journey.  With education, comes a cure!  Thank you, Hill Farm Elementary School along with MANY volunteers!

 

L-R:  Addie Braddock, Spencer Lloyd, Jason Braddock

 

It was so nice of Spencer Lloyd and his family to come out and support the night. They are a selfless, giving family!  Spencer (Bryant's own! American Idol top 15) has a heart of gold, I wasn't able to be there but so impressed by his integrity.

 

 

 Back at the hospital: William’s EEG showed a constant firing which means he is very unstable, but nothing was established enough to be considered a seizure. However, the episodes I have been seeing are seizures per “Dr. Braddock,” but neurologists typically don't change medications/dosages until the patient is having these episodes multiple times daily.

It was also confirmed that William’s symptoms are autonomic dysfunction, which is not really good. It happens with brain injury, so I’m not surprised. I actually suggested to the doctors (and they agreed), it could just stay the way it is, go away, or get worse and interfere with breathing, etc. They didn't tell me this, but I just know. It all involves the hypothalamus which controls a lot, but he is fine for now. We are going to give him more Clonodine throughout the day to try and keep the "storms" (as they are called) away.

Please continue to keep us in your prayers!

(Posters made by some of William's friends and supporters at Hill Farm for the benefit.)

 

William's Update

William's Journey shared a link.

 

Update - (Be sure to watch the video at the bottom of this post.)March 8, 2014:

You usually write an update to state some big positive change that has occurred; this won’t be the case for us. The positive will be that we haven’t seen any ...regression, and that is very hard for people to register in their minds. I understand.

I was in Walmart and saw pictures of missing children. It put a hole in my heart. Many times I have seen those posters and said, “How terrible,” but that is as far as it went. I can never know what pain and agony those parents are going through. The not knowing with no closure, the constant nightmare would be imaginable. I have never prayed for those families. I have seen the posters and thought what a nightmare, but never physically prayed for those families until now.

God is changing people through William, many people including our family. In William’s five short years, he has touched more people than I have in my 39 years. He has accomplished more on this earth as a non-verbal little boy than many of us have. We have no doubt that God is using him to touch the lives of others. William will hear, “Well done my good and faithful servant.”
How many of us will hear that? Isn’t that what this life is all about?

William’s school has been a blessing for the whole family. They are doing a fundraiser for awareness of Batten Disease and in part to help us as well. Jason and I are so touched by this that it hurts, if that makes any sense. I want to say, “No! No!”—we want to stay in our little cocoon, and God keeps- KEEPS- pulling us out and telling me to let him do what he needs to do. What a strong statement. I pray for God to use this, and yet I do, in some ways, see myself standing in his way sometimes. I do for others - that is what I do. We are good at it, both Jason and me. We have that calling. So when others do for us, it is hard to accept—it touches a place so deep within the heart that it hurts. It’s a good hurt, but it is emotional.

I don’t like to show my emotions. I hate to breakdown because it makes me feel vulnerable, and as crazy as it is, I don’t want to make anyone feel uncomfortable. If people ask about William and I don’t think they can handle the truth, I will say, “He’s fine.” even when he isn’t. This whole situation is depressing; so why bring someone else down if you don’t have to. I have always put others before myself, wondering how this will affect them. I am slowly, SLOWLY giving God the reins.

We have had serious decisions to make within the past several weeks. None of them came without prayer and serious thought. I know people have many differing opinions on this, but please respect that this is our family and that we are doing what is best for us. We signed up for hospice a few weeks ago, and I have not regretted my choice at all. We haven’t “given up” on William. As I like to say, we are “living” with Batten disease, not “dying.” I want to make sure we are living every moment. It’s about quality of life, not only for William, but for the whole family. (A new law passed that allows all pediatric patients with life limiting diseases to be on hospice for an extended time. This is not the case for adults. Adults have to follow the standard 6-months rule. We can also get off at any time and re-enter the program.) There are several resources available that I haven’t tapped into yet, because I'm a tough nut to crack, LOL. I will eventually use the resources because I know they are needed. It is pushing me and that is probably a good thing. I will say that it’s painful for me to let anyone in. Again, God is pushing me beyond my borders.

All I know is this is where we are supposed to be right now. I have no idea what the future holds honestly, but I know God has a plan for William, just as he has a plan for all of us. We don’t know how that plan will unfold. All we can do is take each day as a gift and try to enjoy every moment we have been given - very easily said, but hard to follow.

https://www.youtube.com/watch?v=7uk19CSt5Nc&feature=youtu.be&app=desktop

Buy Scentsy,  Support William’s Van Fund!

William Braddock is the 5-year old son of Jason and Braley Braddock (Little Rock, Arkansas), the brother of Addie Braddock, and the grandson of Dan and Gwen Cotton (Macon, Mississippi).  In 2012, William was diagnosed with Late Infantile Batten Disease, a rare genetic disorder.  Because of this disease, his family is in need of a wheelchair accessible van.

Any Scentsy orders placed with me between now and September 25, 2013, will be applied to William’s Van Fund.  You can contact me directly to place your order, or you can visit my website to place your order. 

William is a beautiful little boy with a smile that will light up the room and an infectious laugh!  To learn more about William’s story, please visit   http://thisisrealmedia.com/2013/05/17/the-story-of-williams-braddock/##comment-920.

If you would like to place your order from my website, please visit http://www.callieross.scentsy.us.  On the top of the page, click on the blue arrow to “pick a party now,” and then click on “Shop” next to “William Braddock’s Van Fund.”

If you have any problems or questions, please don’t hesitate to contact me.  Thank you in advance for your support!

Callie Ross

Independent Scentsy Consultant
662-361-4758
callieross@hotmail.com
www.callieross.scentsy.us

This week has been a rough one because William has been in pain for most of the week. We have been in constant contact with our Palliative Care nurses. This was supposed to be his first week of school, but that has been postponed until next week. We are still unsure as to the exact cause of William’s pain. I will say that he has an extremely high tolerance for pain, so to see him screaming/crying for most of the day is heart wrenching. We are being scheduled to see a GI specialist in September as we think this is related to his digestive tract. The surgeons at Children’s Hospital looked over his x-rays and ultrasounds and didn’t think anything was atomically wrong and his G-tube looked good. To make things worse, pain medicine cannot be given because it slows down the digestive tract and will make the situation worse. However, I couldn’t give two hoots about slowing down the digestive tract when my son is screaming in pain, but I understand the doctors’ dilemma.

I always try and look for blessings when going through such trials, and I have found several. Jason has been here this week working from home. This has helped me tremendously! He can take and pick up Addie, and I can devote all my time to William as necessary. It was Addie’s first week in the 5th Grade, and we wanted her to feel special as well. I couldn’t have done this without Jason’s help. I am also grateful that, with all that is going on, William has not had an increase in seizures. Usually, when the body is going through something it will trigger a seizure, and this hasn’t happened this week. We’re very grateful on that front.

Sleep has been non-existent, and it has brought back memories of the days when William only slept 2 hours all night. I am grateful that this is a passing phase and that we will get him sleeping through the night again. Sleep is such a glorious gift. :)
 

 I never want William to feel alone. This is a prodding thought always in my mind. I have held him almost 24-7 this week, and honestly, I cannot put him down. There is nothing that warrants my time more. There will be a time when I will want to just hold him, and it won’t be a possibility.
So, I see this as blessing as well.

I see things so clearly now with our situation. I am more focused on things that really matter: God, my children’s salvation and my marriage. I see people get so bogged down into things that don’t matter and just go through the day-to-day things without seeing the blessings that every day holds. I was the same way, it is human nature. I take nothing for granted anymore, and this new situation with William’s being in pain has even taught me to be grateful when he is, so called, “out of it.” I was worried about him before because he didn’t have the energy he once had and wasn’t expressing his personality. Let’s just say I would much rather see him calm rather than in pain. My heart pours out to parents whose children are in constant pain. You want to help in any way, take all of it away, and you cannot. The helplessness these parents feel must be tremendous.

Hopefully, we will get to the bottom of this, or it will just go away. That tends to be trend with this disease; before you can figure it out, the situation goes away on its own. Therefore, I try not to rush to doctors all the time because they really are clueless.

Thank you for your continued support and prayers. We appreciate all your thoughts and well wishes!

 

 

Praises for Blessings!

I want to send some praises for blessings that God has sent our way. First is Macki Penick, her heart has touched our entire family.  She was led by God and listened to the call.  In doing so, she has blessed our family tremendously.  It goes far beyond monetary things; when someone does something for our family, we are humbled beyond your imagination.  I have never been a person to accept things from others; I have usually been the one to supply their needs.  God is teaching me lessons in accepting help and support as well.  As crazy as it sounds, it is really hard for me; it touches my heart so deeply that it hurts because I am so grateful for everything.  I am very behind on my thank you notes, which is very unlike me.  I want to apologize and want everyone to know that with every note I write tears flow, so I have been putting it off because it is very emotional for me.

The Batten conference was an overall good experience.  I did not learn anything new and realized that I actually knew more than most presenters.  All they knew was research, which was old data. The parents are the experts on this disease, and it was with them that we shared and learned the most. However, with this disease being a progressive brain disease, it unfortunately affects every child in a different way and affects different parts of the brain at different times.  So what works for one, may not work for another - extremely frustrating!  I thought maybe some parents would have this magic formula on how to live joyfully and in the present every day, but everyone was struggling just as we are.  I realized that we are doing really well for the cards that we were dealt.

We got Addie genetically tested at the conference and should get the results within a month or so to see if she is a carrier.  If she is, then before she has children her husband will need to get tested as well.  She said she didn’t want to know and would just adopt children, but we surpassed that hurdle.  The Sibs program was the best thing about the conference!  It was done by adults who had a sibling who had passed from Batten Disease. They wanted to give back and have worked with this program for years - such a blessing.  If we go back to the conference next year, it will be because of this program, and to think I was worried about Addie.  It took some time, but they knew exactly how to get her involved.  She wouldn’t open up but maybe next year she will feel more comfortable.  It was a great experience but an emotional one that has taken a toll on all of us.  We are drained for sure, but life goes on.  School is starting and we are getting things ready for that. William will be going to a new school and starting kindergarten in an inclusion classroom, and Addie will be in the fifth grade, our last year before Middle School.  Both will be at the same school, and we’re looking forward to a good year.

Thank you for keeping up with us on William’s Journey!

Something went right!

July 9 - William has been having more and bigger seizures.  We are adding another medicine to our cocktail, and would appreciate extra prayers.

July 14 - Good news/ the medicine-tweak has seemed to help little William, and he is in good spirits. The seizures took a lot out of him as he was out of it most of the week. However today he was showing us his personality once again. This is something that we cherish and for which we are grateful. Just seeing a small amount of spunk tonight will keep us going for a while. Thank you for all your prayers, they are very much appreciated.