Allen: My Hero

I've been meaning to write here since I came back from DC, but life just keeps getting in the way.  I feel like I have missed the entire summer with the boys, so we've been trying to get as much in as we can in the short time we have left before school starts again!  I don't think any of us are ready for that first day, but I guess it will come whether we are ready or not!

I'm so happy to be able to say that Allen is in a great place right now, he's more stable than I've seen him in at least the last three years, if not since his injury in 2007.  It was great being able to spend some much needed time with him while we were in the DC area getting testing and treatment done.  Being able to just focus on him and what he needs and how much work he has put in over the last 11 months was just what we needed.  We definitely missed the boys, but it was really nice being able to just be us for a few weeks, before adding in the responsibilities of parenting and everything that goes along with having a family!

It is very obvious that Allen has put in so much work while he has been away.  I know that it has not been easy for him at all and that he has had to face a lot of things that he had no intention of facing, but he did it and is so much better because of it.  I am constantly in awe of his strength and courage in facing the demons he is so haunted by.  It is amazing to see how much trauma he has faced in his life, but yet he still finds the strength, determination, and courage to go back to those times and relive them in order to get better.  I am so thankful that he wants to be better.  That is probably the key to all of this.  We are so blessed!

With all of this being said, he will by all means still have his struggles.  I'm sure there will be set backs along our life, but he is willing to do what it takes to get better and he NEVER gives up!  I know that the reintegration will not be easy for any of us, but it will be so good to have him home again.  It will be so nice to be able to be together as a family again.  Hopefully this will be the last big separation we all have, but if it isn't I'm confident that we will all be able to do what is necessary in order to keep us all safe and well.

I'm so proud of you Honey!!!  You are a great role model for our boys and a true hero to us all.  Thank you for your service to our great country, and for showing us what it means to be a hero!

Even Now.........Gina

NICoE Discharge

Today we had our predischarge meeting and received the rest of the results from all of the testing that Allen has underwent the last 3 weeks.  There were not any big surprises for us, although they did change his diagnosis here from mild TBI to a severe.  This did surprise me, but at the same time, it really doesn't change anything with his care.

Tomorrow we will have his final discharge meeting.  While in many ways I am sad to be finished here and I do think we could actually benefit from a few more days of what they offer, it will be good to have it done and be heading back home.  He will undergo one more test in the morning for vestibular, and then head back over to Walter Reed for a follow up with the sleep doctor there.  We will then get a treatment plan, something we've never had since his injury.  I think we are both really excited about that!!

So, some other things that have happened here.  Allen came in with a very extensive medication list, one that all the doctors here were not too thrilled with.  They all, very early on, talked with us about reducing this list.  Well, I am happy to say, through these 3 weeks, he has been taken off of 4 medications completely!!  And, even better than that, they were completely taken away, not replaced with something else!!  He has also had the dosage of one dropped in half, and we are beginning to titrate another one down, with the hopes of getting that dosage greatly decreased.  He did have a couple that the dosage went up on, but we also have hopes of possibly getting off of a couple of other ones.  So, we are both very happy with this part of his plan!!

One of my favorite parts of the process is the ability to try out many different options for helping relieve stress.  We tried one yesterday called heartmath that we both loved!!  I will be blogging about this one in the near future to provide you all with more information on this!

One of the best things for Allen has been the reduction in his pain.  The second day here he received some nerve block injections in his head to reduce his headaches and has not had a headache since!  This is so huge for him.  He also this week had injections in each knee and his knee pain is now greatly reduced.  He did find out that he has a tear in his meniscus in one knee and we will get results for the other knee tomorrow.  Just seeing how much reducing his pain has done for him has been incredible.   He seems like he has taken about 20 years off of his life.

Another thing he had the chance to do that he loved was a range simulator.  He was able to us a service rifle and a 9 mil.  It was actually really good for both of us.  It gave me a lot more confidence in him and his potential to be around fire arms again at some point.  Since we live in the midwest, hunting is such a huge part of our culture.  Every body does it!!  I also had the chance to shoot the 9 mil today and did really well.  I had never shot a hand gun before and my shot group was within the size of a quarter!  (I was told that was excellent!)

For any of you who are struggling with TBI and PTSD, and are still on Active Duty, I highly recommend you check into going to the NICoE.  It is a unique and incredible experience.  We are both so thankful that we were given this opportunity.

Even Now.......Gina

NiCOE

Yesterday we began our second week here at NiCOE (National Intrepid Center of Excellence), at the Bethesda Naval Medical Center post in Maryland.  This has been an amazing opportunity that I am so glad we have given.  We are definitely doing our best to take full advantage of all it has to offer.

First off, I just want to say that all of the staff here has been amazing.  I love the fact that they are all a team, and communicate with each other daily, about Allen and what he needs.  Another thing that I love is that they consider him a part of the team, not just the patient.  He is considered an intricate, and valuable part of the team with a voice!!  Why isn't all medical care this way??

So far, Allen has had lots of testing and interview type appointments.  He has also though, had the chance to try several types of different therapies.  One of the Occupational Therapists told him today that one of the great and unique things about NiCOE is that there are always alternatives, and alternatives for the alternatives!  They keep searching for things that work with each individual until they find what works.  On the first day, he was trying acupuncture, something he had never tried before.  On the second day, he was given a series of injections in his head to relieve headaches.  The next day he woke up without a headache, the first time in almost 4 years!  If we get nothing else out of this, just that was well worth it!!  Can you imagine what it would be like to be headache free after almost 4 years of a constant headache?  Indescribable!!

I am so excited about the possibilities that this could all lead to.  I see the hope for greater independence for Allen as well the hope for a more productive, stable, and peaceful life.  This would help all of us in so many ways!  Of course, we still have the house thing to figure out, but I have no doubt that will all work out as well!

On a little bit of a different note, being back to together with Allen after not seeing him for 10 months has been wonderful, but also a bit of an adjustment.  In many ways, we've had to figure each other out again.  He's done a lot of changing while in the program in California, and it's been a work in progress figuring out what he can manage on his own, and what he may still need help with.  It's been really awkward at times, which is really awkward in and of itself.  It shouldn't be awkward being with my husband!!  I'm happy to say though, that we are figuring it out and learning to communicate with each other again.  We are beginning to click, and it feels good!!  It makes me really want him to be home again.  Hopefully it won't be much longer before we have a home for us all to be together again as a family!!

Even Now..........Gina  

Walter Reed, Again

This week I made the trek from Kansas to California, spent the night, then flew with Allen and Frankie from Sacramento to Washington DC.  My head was spinning with just trying to figure out what time zone I was in!!  It was so amazing seeing Allen again, but at the same time a little awkward.  We hadn't seen each other at all since September so it was much like a reunion after a deployment.  And yes, it is awkward just admitting that seeing your husband is awkward!

I was a little bit anxious about traveling with Allen all the way across the country after not having been around him for so many months.  However, the day was very uneventful and Allen and Frankie both did great!  I am super proud of how well Allen handled all of it as I know it was stressful for him.  We arrived on Monday afternoon and got checked into the Mologne House (the hotel on the campus of Walter Reed that the families and many outpatients stay in.)  We spent the night in my room, and then Tuesday morning went over to the hospital to get Allen checked in.  He is now an in patient on Ward 58 until Monday.  They hooked him up to the video EEG and then got him settled back into his room.


The schedule here is crazy!  That first night, there were people in his room until 7:45 at night!  It was a long and exhausting day and the next day was about the same.  They are giving him the full TBI workup as well as doing a sleep study tonight and a slew of other tests.  So far, that is all that has been going on.  I know that much of this is really difficult for Allen, but aside from a few mood swings, he is handling like a champ!

On Monday afternoon, Allen will be discharged and then we will move to The Fisher House at Bethesda Naval.  He will then be an out patient at the NiCOE (National Intrepid Center of Excellence) where they will do further testing and come up with a treatment plan for him, something he has never really had!  I'm  anxious and excited to see what all of this shows and the plan they come up with.  I'm also ready to see what the sleep doctor has to say after his sleep study tonight.  He is said to be one of the best sleep doctors in the country and we really like him.  He was very hopeful in being able to help Allen with his sleep which in turn should help with everything else.

Coming back to Walter Reed was full of emotions for both of us I think.  For Allen, it caused a lot of anxiety and dread.  He was worried that we would get stuck here for several months, like we did when he was initially injured.  For me, it was both good and bad.  I was nervous about being thrown back into full time caregiving after being apart for so long.  However, I was excited about the possibilities of what these tests and all could mean for getting Allen better.  I also was excited to be able to reconnect with some friends in the area, which will hopefully happen.  We have several friends here that we made last time we were here as well as other's we have met along this journey.  It will be great to get to see some of them as it's been a really long time.  The other nice thing about coming back here is that it is familiar which helps both of us.  Unfamiliar places are a trigger for Allen and I get nervous trying to find my way around.  Coming back here to Walter Reed though is almost like coming home, just because we were here for so long before.  It is nice to be back, especially since it is for a short time.

Another benefit in all of this is that it will serve as Allen's TDRL exam.  (For those non military, Allen was temporarily retired from the military.  This is because when he was retired, his condition was not considered stable.  So they temporarily retired him, which is not uncommon, to see if he condition would stabilize.  He can stay on this status for 5 years with a required exam every year until they deem his condition stable.)  This will hopefully be made permanent after this first exam, which his team feels will be.  They explained to me that 85% of the first year exams are then made permanent.  This would be a huge relief, especially for Allen, as he is very worried about losing benefits.  With a 90% rating from the military it is doubtful that he would lose benefits, but never the less, is a huge burden for him to carry.

I am constantly amazed by the people I meet and the new information I learn from the amazing people within this community of wounded warriors.  We are both very confident in the provider's we have here this time and have once again been touched by other families and service member's going down this road.  I have met some of the strongest, most determined, most caring people along this journey that have given me strength and courage to continue on.  I'm thankful for all of the wonderful people who continue to come into our lives.

Even Now........Gina

My Crazy Life Just Got a Little Crazier

It's been awhile since I blogged or at least I've slowed down on my posts lately.  I've been crazy busy and have not had time to be on the computer at all.  So, lots of updates I need to write about!!

First of all, Dreyson has kept me incredibly busy running him to rehearsal's at Starlight Theatre which is an hour drive from our house.  He has rehearsal everyday for his role in the upcoming musical, The King and I which is starring Lou Diamond Phillips as the King.  Dreyson is loving every minute of it and I think I am getting more worn out than he is!!

Next, we have sold our house!  This is both good and bad.  The good news is that we sold our house in this economy pretty quickly.  The bad news is that as of June 10 we will be homeless.  We originally were not supposed to close on our house until July 1, but today that all got moved up because of some stuff with Allen, which I'll explain in a minute.  So, for now, the boys and I will be staying with family for awhile.  We are frantically packing and moving stuff to storage in between trips to Starlight.  Panic is beginning to set in!!

Now, for Allen.  When I was in DC in May, I met Gen Chiarelli who offered assistance to us in getting Allen some much needed help.  His office has arranged for him to go back to Walter Reed and then onto Bethesda for his TDRL exam, and to get some further testing and a better treatment plan in place.  We will both be placed on Invitational Travel Order's as he cannot travel alone or be left alone.  I will be his NMA and we are supposed to plan on being there for 3-4 weeks.  They originally wanted us to go next week, but I had to have a couple of weeks to finish this house sale and get Dreyson through The King and I.  The boys will be staying here with family, so once again, we will all be separated again.  However, hopefully this will be a huge step in getting Allen some further testing and some much needed answers.

Just like everything else we've been through, we will get through all of this as well and be stronger and a closer family when we are on the other side.  I just hope that after all of this and we get a new home, our life will get a little less chaotic and more peaceful.

Even Now.......Gina

Strike Out Stigma

Here is a letter I'm sending out to all of my friends to invite them to get involved in this amazing organization that is near and dear to my heart!  Please consider attending the event or making a donation if you can't attend.  Thanks so much!!


Dear Friends,

As some of you may know, I am an active volunteer with an organization called Bring Change 2 Mind (www.bringchange2mind.org).  Bring Change 2 Mind, founded by Glenn Close, is dedicated to eliminating the stigma of mental illness.  Though mental illness is something that we don't like to talk about, 1 in 4 people in our country suffer with a mental health problem like depression, anxiety, or bipolar disorder.  Of that number, only approximately 20% receive the help and support they need to lead healthy and productive lives.  Bring Change 2 Mind knows that it is possible to live an active and happy life, even with a mental illness, and as an organization, we are committed to helping the public at large understand and respond to those who suffer.  Many people are fearful of even the words, "mental illness."  Our media portrays those with mental illness as violent, prone to criminal activity, unproductive and frightening.  But the truth is, many people living around you, people that you live with, work with or socialize with, suffer silently with mental health problems.  They are afraid to seek help due to stigma.  As a friend, I am asking you to help Bring Change 2 Mind eliminate this debilitating stigma that prevents people that you may know and love from actualizing their full potential and living healthy lives.  Please take a look at our first public service announcement, filmed in Grand Central Station under the direction of Ron Howard.  Glenn Close and her sister Jessie Close are featured in this PSA as they speak out about mental illness.

I am very excited to share with you that on June 18th, 2011, Bring Change 2 Mind is taking our anti-stigma message to Citi Field for our first "Strike Out Stigma" event with the New York Mets.  We have reserved 500 group seats available for $43.00 per ticket.  Seats include a BC2M logo t-shirt, the opportunity to attend a special pre-game address with Glenn Close, and so much more.  It's going to be a wonderful day at the ballpark, and we ask you to consider attending.  Tickets are available on our website at www.bringchange2mind.org.  Rally your friends and come along to join us for this fun and inspiring day at Citi Field!

I am also asking you to consider a financial gift to Bring Change 2 Mind.  A contribution in any amount will help Bring Change 2 Mind continue to create innovative approaches to stigma elimination.  Every dollar that Bring Change 2 Mind receives is put to good use educating our communities at large about this illness that affects all of us, directly or indirectly.  I know that you are solicited for charitable giving often, and I appreciate your consideration of my ask.  I am committed to Bring Change 2 Mind, and I can assure you that your funds will be used responsibly.  I have attached a donation form for your completion.  This form along with your gift may be mailed to Bring Change 2 Mind at the address provided on the form. Please also note that contributions are 100% tax deductible, and Bring Change 2 Mind will provide you with appropriate documentation for your tax purposes following our June 18th event.

Thank you for helping us make our "Strike Out Stigma" event a success!  We appreciate your interest in our mission, and we look forward to sharing our successes with you along the way.

With Gratitude,

Gina

Amazing God

One thing this trip to DC constantly reminded me of is how awesome our God is!  Time and time again I felt His presence.  From the first flashback emotions of getting on that plane alone flying to DC until my plane trip home I was in awe.

Both legs of my flight I had a seat next to amazing women that both blessed me and amazed me.  The first one was a lady who had recently been involved in an event at the Mologne House at Walter Reed for wounded warrior spouses.  She said she had been truly touched by that day and was really questioning her career path.  I was able to share a bit of my story with her during the flight to Atlanta.  It was like God knew just what we each needed.  Having someone kind to talk to right next to me was great for me since I get anxious simply about who may end up next to me on a flight and I was in the center seat!  So, Terria, you blessed me as much as I blessed you!!

On my flight from Atlanta to KC, again I was in the middle seat and facing anxiety over who I would be stuck between.  Soon, this wonderful lady came and sat next to me and I soon began to relax.  It's not the flying that bothers me, but who I may have to sit beside!   (I know, I'm kind of weird like that!)  I quickly discovered that she HATES flying and was extremely anxious about it.  I also quickly learned that she is a strong Christian!  We talked the majority of the flight and again, I think we were a each a blessing to the other.  She lost her husband in Afghanistan almost a year ago and was flying back to Ft. Leavenworth to pick up her daughter from K-State.  She shared with me that this was the first she had flown anywhere since her husband's death and that this was something he normally would have taken care of.  We had an amazing talk, stiff necks and all!  (We both had stiff necks from constantly turning toward each other to chat!)

These ladies both blessed me in different ways.  This also reminded me that God puts people in our lives, whether just in passing, or to stay awhile, for many different purposes.  It reminded me once again that God is in complete control of this crazy world and we just have to trust Him to provide who and what we need at just the right time!

Even Now......Gina