The Trip to Boston

We took Brigham to the Children's Hospital in Boston over Spring Break.  I have had a lot of people ask me questions about how it went and what we found out.  I can't remember who we told what so I decided to write a post for the blog to let people know what is going on.

We took Brigham to see Dr. Elizabeth Barkoudah.  First, let me say that we absolutely loved her.  She not only knew a great deal about her field, but she was very personable.  She looked at the years of testing we have already had and suggested a few more test.  She also told us that she felt his disorder should be classified as Athetoid Cerebral Palsy.  She explained that this doesn't really tell us what is going on in the brain, it just classifies the symptoms we are seeing.  It will probably take more testing and time to find out what is actually causing the cerebral palsy.  Athetoid cerebral palsy is a pretty rare form of cerebral palsy and so a lot of neurologist don't see it very often, if at all, in their practice.  Because of her specialty Dr. Barkoudah has patients from all over the country with this disorder that come to see her on a regular basis.  Brigham does have some symptoms that are not typical of athetoid cp, but Dr. Barkoudah feels that it is likely these symptoms with respond to treatment as well as the more typical symptoms.

So what does this all mean.  Brigham will start on a new medication called Trihexyphenidyl which is a generic for Artane.  This is a drug most often used for people with Parkinson's disease.  We will have to introduce the drug slowly over time and it may take weeks before we know if this drug is helping.  We will also, over time, hopefully be able to ween him off the drug he is now on to help him sleep.  We haven't started the medication yet because none of the pharmacies in this area carry this medication, and it took a few days to find a supplier that had some in stock.  It is a pretty uncommon medication especially in a concentration used for children. Hopefully this medication will help the movements decrease and allow him to sleep at night without the interruption of uncontrolled movements. Only time will tell.

 So what does the future hold?  There will be more testing now, and some testing they would like to wait to do when he gets older.  We will stay in contact with our neurologist in Boston through email and telephone and see her in her office at least once a year.  She feels she can work with our neurologist here in Arizona and only have to see us on a yearly basis which we are very happy about.  Answers should keep coming with time.

So what are we going to do?  We will continue to watch our happy little boy grow and do all in our power to make him feel loved and accepted.  We will pray for more answers, but find joy in his sweet spirit even if those answers never come.  We will hope he learns to walk, but help him learn to stand tall even if his legs can never hold him up.  We will love him, and when he gets older we will tell him about the very special people, some who knew him and some who didn't, that saw how special he was and wanted to show him how much he was loved.  Thank you all!

written by Carol Hawkins (mom)

THANK YOU!!

We just want to express our gratitude to everyone who donated, sponsored, participated and volunteered at "Battle For Brigham".  It was a HUGE success and we will forever be grateful for all your support.  We have been blessed beyond measure. 

We will post pictures when we get them.  We will keep the blog updated as Brigham seeks his treatment in Boston.

THANK YOU, THANK YOU, THANK YOU!!!!!

Tomorrow is the BIG day!

We are soo excited for Tomorrow, March 3rd!!!  We have about 450 registered runners!  That is AMAZING!  We can't thank you all enough for your love and support of Brigham!

We just wanted to remind you that tonight, Friday March 2nd, you can come and pick up your race packets from 4-6 p.m. on the EAC Football Field.  If you haven't registered and would like to, there is still time.  You can come tonight and register if you would like; or tomorrow morning until 7:30 am registration will be open. We still have a few shirts left, so they will be on a first come, first serve basis!!! 

Also, don't forget about our YUMMY PANCAKE BREAKFAST, which starts at 7:30.  For $3 you will get pancakes, eggs, sausage and a drink.  We are also having some fun kid games (jumping castles, barrell rides, ballons, face painting and more) and a silent auction, with some really AWESOME things in it! 

So, come out and bring your whole family and support "BATTLE FOR BRIGHAM"!!. 

Silent Donation

Just wanted to remind everyone, that this coming Monday, February 27th from 4-6 p.m. we will be on the south end of the EAC football field for you to drop off your items.  If you can't make it during that time to drop it off; please contact us and we can make arrangements to meet with you.

Also, if you would like to donate baked goods, please let us know, as soon as possible.  We will be collecting those on March 2nd from 4-6 p.m. or on the morning of the race, before 7 a.m.

If you have any questions concerning this.  Please contact us.  We thank you for your support!

Only 9 more days!!

ps..... ITS NOT TO LATE TO REGISTER :)

Don't Forget.....

Pre-Registration ends TODAY!!!  


Save $5 and be guaranteed a t-shirt if you register before tomorrow!!  Come and help us "Battle for Brigham"!!

Only 2 more days......

for the PRE-REGISTRATION!!  So if you haven't already and want to pre-register.  You can register online, at THE WEAR, EAC WELLNESS, ROADRUNNER REHAB!!


I have added the link below to register online!!


Online Registration

Every little bit counts........

I just wanted to share this information with you all.  Brigham's mom (Carol) sent me an email the other day.  I hope she doesn't mind me sharing some of it with you.....(I did ask her and she is ok with it!!)


Without your help we would have eventually gotten Brigham the help he needed, but it would 
have taken a very long time and would have been a huge financial burden.  I also wanted to let you know that Brigham is scheduled to see a specialist in Boston at the end of March.  We are very excited about seeing her.  From what we know about her specialty even if she can't give us a diagnosis she should be able to help us manage Brigham's symptoms much better than the doctors we have seen so far.  As much as we want a name for Brigham's disorder it is so important to us that we are able to help him get as much out of his life as he can.


So we just wanted to THANK YOU, for your all your love and support, in helping us get "Brigham to BOSTON".  So please help us spread the word.  Every little bit helps.

Pre-Registration

Just a quick reminder, Pre-Registration ends on the 15th. Only 5 more days :)  So if you want to save $5 and be guaranteed a t-shirt, please register before then.  


Registration forms are available at THE WEAR, ROADRUNNER REHAB, EAC WELLNESS CENTER, OR YOU CAN DOWNLOAD the link at the top of the blog.


Thanks again for all your support!!

Sponsor Form

 If you are interested in Sponsoring you can download the form and mail to the address listed on the form.  We are hoping to have all of the sponsors by Feb. 13th.  If you have any questions, please feel free to contact us.  Katie @928-792-6512 or Cathie 928-485-2459.

We thank you for your support in helping to sponsor the "Battle For Brigham" event!

Sponsor Form

WHEN/WHERE IS THIS AWESOME EVENT??

We have had people wanting to know WHEN/WHERE the "BATTLE FOR BRIGHAM" is going to be.

So, just a reminder to mark your calendars for 

SATURDAY, MARCH 3RD

EAC Football Stadium - Thatcher, AZ

Breakfast, Silent Donation Bids and Family Activities will begin at 7:30am.

 The 1 mile fun walk begins at 8:00 

5K begins at 8:30.  

We're excited to announce that our Battle for Brigham Event will be just that,  An Event...

 

Along with the 5k/1 mile fun walk and Silent Donation we will be having a Pancake Breakfast and Famiy Fun Actvities!

 

***Pancake Breakfast will be $3.00 per plate. 

***Family Fun Activities will be played with tickets.  Tickets will be: 10 tickets $5 and 25 tickets for $10!

Activities will include Ring Toss, Face Painting and a Jumping Castle just to name a few!

 

Breakfast, Silent Donation Bids and Family Activities will begin at 7:30am. The 1 mile fun walk begins at 8:00 and the 5K at 8:30. 

 

Bring the whole family for a morning of Fun and Excitement as we ALL "Battle for Brigham"!

 

Remember:  Pre-registration deadline is February 15th! T-Shirts are only guaranteed to pre-registered runners.

 

A HUGE Thank You to our Sponsors......

We just wanted to give a SHOUT OUT, to those who are helping us "Battle For Brigham"!!  There has been such an awesome response in everyone wanting to help out and sponsor.  Also, there has been some amazing things happen, in just this short amount of time, since people have heard about our benefit.

So Thank You to our Sponsors (we will update as we receive more)

THE WEAR
BUSHMAN DENTAL
ROADRUNNER REHAB
EA MANUFACTURING
FERTIZONA
SHILOH COMMUNITY CHURCH
CARPET, TILE & MORE
TROPHIES N TEES
FT. THOMAS FIRE DEPT.
AUDIO VISIONS
JACE & WENDY JOHN
BOOKWORMS
SAFFORD FFA
SAFFORD BUILDERS/ACE HARDWARE
HARALSON'S
ALLRED INSURANCE AGENCY
MACK'S AUTO SUPPLY
STEVEN'S CHIROPRACTIC
H&S FEED STORE/FIELD SERVICES
IMAGES SALON
LEE'S RITEWAY
FERRIN'S ROOFING
SAFFORD LIONS FOUNDATION
THE MEDICINE SHOPPE (BENSON)
MILLENNIUM MEDICAL SUPPLY INC.
EASTERN ARIZONA AG
ETERNA
VISTA RECYCLING
GRAHAM COUNTY ELECTRIC
SOUTHWEST RISK
CASA DEL SOL REALTY

TIGHT SEAL INSULATION   

EA GLASS                  

RG Howard Farms     

S & J Farms                

Mount Graham Family Practice  

HCP                            

JCC Trucking              

Copper Country  Cartage  

Gentle Care Transport    

LA PALOMA

JON'S HEATING AND COOLING

KEMPTON CHEVROLET

ARIZONA MACHINERY

GRIFFINS PROPANE

COCHISE JEWELRY

THE BODY DOC'S

B&P'S KETTLE CORN EXPRESS

DESERT SHADE BLINDS

COPPER COUNTRY CARTAGE

RATTLESNAKE EXTERMINATING

R&M HOMES

Brigham's Story

photo by CTR IMAGE

Brigham was born full term and had an uneventful delivery. The first symptom's Brigham presented with where very low tone, uncontrolled movements while sleeping, and sensory problems in his hands and feet that caused pain when they where touched. 

 At 7 months during a regular checkup his doctor told us he thought he should be seen by a neurologist and start physical and occupational therapies.  Within a month Brigham was seen by a neurologist and he started therapy shortly there after.  After seeing a neurologist several blood tests where ordered for neuromuscular and metabolic disorders and a MRI was scheduled.  All tests came back normal. Brigham then had a nerve conduction test and an EMG.  Both these test where normal and Brigham was sent to a geneticist.  Several more blood test where ordered and they all came back normal.

Despite Brigham's problems he was starting to progress and seemed to be cognitively normal.  He started sitting up at about 18 months. and we were happy with his progression.  A few months after
Brigham started sitting up he started having uncontrolled movements called athetoid movements. They where fairly mild at first, but progressed very quickly and within a few weeks Brigham could no longer sit up and he spent an entire night in the emergency room with movements so severe he didn't fall asleep until 6:00 the next morning.  After this night Brigham's movements at night got so bad he has not slept through the night again without being medicated.   He had another MRI and two EEG's.  All were normal. 

It has been over a year since the Athetiod started and Brigham still can't sit independently.  Most days he can feed himself finger foods and drink from a sippy cup.  Days when his movements are more severe he can not nap and has great difficulty feeding himself or drinking from a sippy cup. Brigham is small and his growth continues to not be as strong as the doctors would like.  He also seems to have a weaker immune system.  His neurologist feels he most likely has some type of central nervous system
disorder or a movement disorder. 

Brigham is a very happy and smart little boy.  He continually surprises his therapists and doctors at the things he learns to do despite his disability. Brigham loves life and brings joy to everyone that he meets.  
Thank you to Brigham's sweet mom Carol, for sharing this information with us! 

More then just a RUN......

We just wanted to let everyone know that there is going to be something for everyone at "Battle For Brigham".  So, if you are not a runner or if you (or your spouse) will be watching the kids while you do the run/walk, there will be some fun things for them and the kids to do. 

We will be having games, a jumping castle, silent auction and a few other things that are still in the works (so stay tuned).  So you defiantly don't want to miss coming out on March 3rd!  It is going to be an AWESOME day. So please help us spread the word.  Come and help us as we "Battle For Brigham"!!! 


ps..... If you aren't going to be able to make it and still want to donate, we have set up a DONATE button right here on the blog. We really do appreciate all your help and support!  Lets get this sweet little boy the care he needs!

"Battle For Brigham"

 

 Brigham will be 3 years old in February.  When he was born, he seemed to be a healthy baby.  As time went on his parents, Shane and Carol Hawkins, realized that something wasn’t quit right.  He wasn’t developing as their other children had.  After going to doctors for the past two and half years they still don’t know what is wrong with him.  Doctors don’t know why he can’t talk very well, sit up by himself or walk without the support of his walker.  He attends therapy and sees doctors on a regular basis, still not much improvement. They have suggested that Shane and Carol take him to another state to see if someone else will be able to find out why he isn’t developing properly.  Please come show the Hawkins Family that our community supports them as they “Battle for Brigham” everyday to give him the best that they can!

Saturday, March 3, 2012

Eastern Arizona College, Mickelson Football Stadium

Pre-Registration Packet-Pickup Friday, March 2nd from 4-6 pm at EAC

Race day registration and packet pickup begins @ 7 am

1 Mile Fun Run/Walk begins @ 8 am

5K begins @ 8:30

Silent Auction to be held from 7 am to 9:30am the morning of the race! 

Entry Fees are $20  ($25 after February 15) 13 and under, $10 each ($15 after February 15). 

**A Battle for Brigham T-shirt is included with the entry fee. T-shirts are guaranteed only for pre-registered runner.**

 For more info and registration call Cathie Hawkins @ 928-485-2459 or Katie Hawkins 928-792-6512 or

visit our Blog at www.battleforbrigham.blogspot.com

Brigham's Family

Brigham comes from a very loving family of 7.

His parents Shane and Carol Hawkins who have been married for 14 years.

His 3 brothers Payton, Tyson &

Parker.

 

His one and only sister Kayla

 

They all love and dote on Brigham's every need. Their bond as a family is very special.  They are all very close and feel so lucky to have this sweet little boy in their home.