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.