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Overall...

I'm SO EXCITED!

On the 11th of this month I am going for a visit with my primary care doctor to be referred to a plastic surgeon so I can FINALLY have my breast reduction!!! I'm not looking forward to the operation itself or the recovery time following the operation BUT, I am VERY eager to be done with the back spasms and assorted pains that lugging around GG cups causes.

In OTHER news:

Dad is still doing chemo to fight cancer. All things considered, he is holding up fairly well for a guy who was supposed to be (at least according to the doctors) long gone by now. Unfortunately, the cancer HAS jumped to a new organ system, which brings us to a grand total of three. It started as colorectal, metastasized to his liver & has now migrated to a lung. On the bright side: The tumors all seem to be responding to the chemo and shrinking a bit so, even though it has spread to a new organ, it is still feasible to treat the cancer as a chronic illness instead of a fatal one! We continue to hope for the best and live each day thankful for every moment God chooses to give us as a family.

The kids are hitting Summer FULL SWING! Auron graduated kindergarten, Xander is almost fully potty trained and Drayden has hit his "terrible two's" early and is driving what little sanity was left in this house screaming as it bails out the back window! Samantha has been fighting off a nasty infection around her feeding tube for the past month but I think we have almost won that battle. Seizures are a whole different story. I can't seem to convince Samantha's neurologist that aggressively treating her seizures, even with an increased risk of side effects, would be well worth it if she gains even a marginal improvement in her quality of life. In his defense, Samantha has only been his patient for about 6 months and he is still getting to know us. I have to give him props for being open to discussion and happily letting me be an active participant in Sam's care and for being reasonable when it comes to his willingness to ask for consults with doctors out of state who specialize in treating neurological issues in people with Angelman Syndrome. Any doctor who DOESN'T think he is God gets MAJOR bonus points in my book!

I'm still happily growing the relationship with my long lost sister and only wish she lived closer so we could have more bonding time face to face. Funds are tight, as they always tend to be when you have a family of six to feed and clothe, but I feel very blessed and fortunate because I know there are SO many without any income at all right now.

Overall, life is good!

Overall, we are wonderfully BLESSED and THANKFUL for the gifts GOD provides!

Walking For Samantha...

Where did all the dust-bunnies come from?

As any repeat reader of my blog can attest, I generally blog when I can't sleep because I have too many things buzzing through my brain. Such is the case tonight, so I thought I would fight off the ginormous dust-bunnies that are trying to colonize my poor neglected blog and fill you guys in on life changes around here. (I'm also prepping for my Christmas letter, so this is sort of a first draft.)

Major update highlights for this year: I am no longer an only child! Months ago, my long lost paternal half sister and I finally found each other! She is a fabulous person and we hope to meet in person as soon as we can manage it. I am just going to call her "T" or Sis here to protect her privacy when I talk about her. T is six years older than I am and is married with two beautiful step-daughters and one handsome son. She has had a less than ideal life but was blessed with a loving adoptive Dad who still stays actively involved in her life. I'm her only sister (which is super cool from my perspective!)

Dad is still fighting the good fight and recently had another operation to remove more cancerous tissue. He is ornery and doesn't go to the doctor for half of the things he probably should but he assures me he is not going to give up any time soon. He has lost weight (much more than would be healthy) for over a month and is struggling to keep enough nourishment in his system to even stay hydrated and maintain his weight. My grandfather swears he is starting to look like a toothpick.

Dad's hospital stay after his last operation was much longer than they originally anticipated which left Samantha in the care of a family friend who didn't have the proper paperwork to seek medical treatment for her in case there were an emergency. The Army considered the situation a child care emergency and granted emergency leave to my husband so he could drive to Texas to pick up Samantha and her mass amounts of equipment and bring her back home to live with us again.

MY CHILDREN ARE ALL UNDER THE SAME ROOF FOR THE FIRST TIME - EVER!!!!

We are still working out all the details that go into meeting Sam's needs but the good news is that my body has held up surprisingly well to all the lifting and moving involved in her day to day care! Things are VERY busy around here because we don't have nursing help set up for Samantha yet and adding all of her daily requirements to the already hectic schedule of three small boys has been... interesting to say the least! We have not had the jealousy from the boys that I expected. They have all been exceptionally sweet with their sister and mostly argue over who gets to help take care of her. I have been blessed with some wonderful kiddos and I can't wait to see what wonderful and compassionate men they will grow into as a result of growing up with our beautiful girl!

Auron started school this year and is doing great! He loves his teacher and has made lots of friends. Focus is a bit of a problem for him, but he IS mine after all! He is turning into such a sweet little gentleman and I am so pleased with the tender personality that he is growing into. Xander doesn't look like a baby any more. He has grown so much this year and looks so much more like a little boy now. He is a very loving child and constantly follows me through the house kissing my hands and hugging me. He has one of the most beautiful smiles I've ever seen and a giggle to match! Drayden is almost a year old and just started walking. He is bursting with WAY more personality than the average twelve month old. He dances every time he hears a beat, wags his pointer finger at you when he is talking to you, giggles and smiles all the time, and ADORES Auron.

I am feeling very BLESSED and thankful for so many reasons. Please keep us all in your thoughts and prayers as we always need them, and special prayers for my Mom and Dad would be much appreciated!

Update and request for help...

It was recently brought to my attention that I have fallen WAY behind on my blogging since my hubby returned from Iraq. In my defense, we DID have 15 very long months to make up for. Still, I have neglected my poor blog and must fill the world in on life in general around here.

(If I remember correctly we were supposed to have a colony on the moon by now, right?)

We moved to Fort Gordon at the end of October and at the beginning of November our R&R baby Drayden Tobias was born. He weighed in at a whopping 7 pounds 11 ounces and has been a very healthy boy!

My Beautiful Daughter Samantha is still in Texas with Grandma and Grandpa. Grandpa is still fighting Cancer and Samantha helps him remember exactly WHY he has been fighting so hard for the past three years. They inspire each other and Samantha has been doing quite well with Grandpa to cheer her on but unfortunately, she is getting bigger every day.

Samantha is very social and loves to be around people. She loves going to church on Sundays and Wednesday nights and she loves going to the drive in movies with Grandma. When she was still small enough for me to handle on my own she loved going shopping with me. She goes to therapy once a week and makes the 20 hour round trip to see her doctors in Houston once every three to six months. It is SO hard to get her anywhere because she does not have a wheelchair accessible vehicle. Anyone who has ever researched the price of wheelchair vans will tell you that they are insanely expensive. They average between $20,000 and $60,000.

My parents were recently given the opportunity to buy a used wheelchair van for the astonishingly low price of $4,500. None of us can afford it but we also know the chances of ever running across a deal this good again are slim to none. It is an older model van but it has lower mileage than the vehicle they have now and the wheelchair lift is in perfect working order. So if anyone reading this would like to help Samantha with a BIG quality of life issue AND help her stay with her family for MUCH longer (instead of having to go into a "home" because we can't get her out of the house), please click the donate button on the sidebar to your right and give whatever you can.

I promise to keep everyone updated on our fundraising progress and (I hope) post photos of Samantha with the van once we find a way to buy it. For now I will post a video of Samantha at therapy so you can all see how big she is getting. Thank you in advance for any help you can give my beautiful girl!

Remember The Troops This Christmas...

Click on the title to see a great video. My husband is home with us this Christmas, but thousands of soldiers are away from their families and this time of the year is the hardest part of a deployment.

Happy Father's Day...

I love you Daddy! Thank you for always being there and loving me... even the times it drove both of us nuts!

Missing My Miracle, My Angel, My Sam...

Attention All Photographers!!!!

Attention All Photographers

(especially if you live in or close to a military town) check this out!!!

I can not express in words the impact that your time could have on a military family.

On a YouTube trip it would seem...

Quick update...

saying goodbye at the end of R&R

My cousin Julie is officially a "MRS." now! Congrats to her and her Handsome new hubby Jeff! Yay for wedding bells!

My cousin Rachael, who's son Carrick I requested prayer for awhile back, has her beautiful and healthy boy home with her where he belongs now! Thanks so much for your prayers!

My husband was home for R&R in February and tomorrow marks the start of month 12 for this deployment. We are on the downhill slide now! YAY!

OH... and in November we will be adding an R&R souvenir to the family!

Yup... He is strutting around with his chest all puffed out... SO PROUD he "knocked me up" over R&R. Yay, for babies! (Last one for us though, four is a good round number.)

When Wedding Cakes Go WRONG...

And, in honor of my cousin Julie's upcoming wedding I would like to share some wedding cakes posted on Cake Wrecks. To remind her Mom that there ARE worse things out there than a western themed wedding, and to make everyone else gasp/smile and/or giggle while frantically calling their baker to make sure they have a "backup cake" ready in case the original is delivered in less than expected condition.

NICU Flashbacks & Requested Prayers...

Me holding Samantha in NICU 4 1/2 weeks after her birth.

Tonight my heart is broken for my cousin Rachael and her husband Corey. Rachael gave birth to the couple's first child on Wednesday night... two months early. Little Carrick is in NICU, breathing on his own, and from my cousin's brief email description, seems to be a fighter.

Please keep them in your thoughts and prayers, they are going to need it.

I can't help but have flash backs to when Samantha was born two months early. I remember so vividly the feeling that, somehow, I had failed my child. I felt betrayed by my own body and angry that there was nothing I could do to make things better. I was terrified of loosing my daughter before I ever really had the chance to know her and I wanted to find a way to protect her from all of the pain that comes along with an extended NICU stay.

Mostly I just felt helpless and confused.

How and why could this happen to us? What could I have done differently to make her enter the world healthy and full term? How did my WHOLE WORLD suddenly shift to dramatically revolve around this tiny piece of me? How is it possible to love someone so small SO much more than I have ever loved anyone, including myself?

My heart is broken for my cousin, not because I think her son will not survive, quite the opposite. My heart is broken because I have been in her shoes, and I know how it feels to be a mother who must watch her child fight for every step, knowing there is nothing you can do except watch, wait, and pray that God will pull you through.

Vent of the day...

So, I am EXHAUSTED! I want to blog, but I'm just not sure I have the energy tonight... So, you guys get a very brief update:

Samantha has been hospitalized well over a thousand miles from me (which, in case you are wondering, sucks big green monkey nuts). She ran fever all weekend long and her O2 sats were... well, less than great at the clinic this morning. She has BOTH the Flu (and Yes, she did get a Flu shot this year) AND Scarlet Fever. Leave it to Sam to get horribly ill right after Mommy leaves town... (grumble, grumble)

Meanwhile...

Dad's incision from his "let's chop out 75% of your liver to get all the cancer" procedure has opened up enough that you can see the internal stitches. He went to the ER and they think he has another infection and are dosing him up on broad spectrum antibiotics while they wait for the culture to grow something shnazzy (and by shnazzy I mean "ewwwwww! gross!)...

And HALFWAY across the freaking country...

I am worried about Sam & my Dad and feeling utterly helpless and useless knowing there is NOTHING I can do to help. My Mom is going to run herself into the ground trying to take care of Sam and worry about my Dad too.

And without someone there to bug the royal CRAP out of my Dad (Yes, I KNOW you are reading this, and you KNOW how hard headed you are!), he likes to ignore/blow off/live in total denial of anything that makes him feel slightly off. Dad is the kind of guy who wouldn't mention heart attack level chest pain to anyone until you noticed him holding his chest and turning blue... And EVEN THEN he would do his best to convince you that "it doesn't really hurt that bad..."

STUBBORN MALE. Exhibit #1 - My Daddy.
(I just point this out because I'm so worried he will ignore something significant that will come back and bite him in the rear later...)

Please pray for Samantha and my Dad... and DEFINITELY pray for Mom. She gets to deal with Dad's stubborn nature AND all of the *SARCASM* "brilliant" medical professionals in that area*SARCASM*! Yes, extra prayers for Mom.

And for your daily dose of giggle, you should go check out Cake Wrecks explanation of why you should never order a cake over the phone . It made me fall off my yoga ball...

Angels & Pilots & Luggage, Oh, My!

Hello again Blogland! I am home now and finally feel recovered enough from my trip home to update. My four month visit with my family in Texas went (mostly) well. There were a few minor hiccups from time to time, but nothing major. I am thankful that my grandparents were able to put up with me, the boys and all our stuff in their space for four months. I was able to spend quality time with my family, be there to help out when Samantha had her operation, and be there to help Mom (and irritate the crap out of Dad) when he had his operation. I will tell everyone more about family interaction and operations in a later post (when the boys are NOT climbing the rafters).

I flew back to North Carolina on January 10th. I have never been a big fan of Delta Airlines, but since Army Support Services made (and paid for) my airfare to Texas and back I had no intention of arguing about HOW we got there. I arrived at the airport in Odessa an hour before my flight was scheduled to take off thinking that would be more than enough time to get checked in and through security (even with my four heavy carry on items and a gate checked car seat). I was apparently wrong. The one employee trying to get people checked in at the desk was way overwhelmed. She honestly was doing her best, but the people in front of me in the line had overweight bags that they decided to unpack and repack without moving to the side. By the time I grabbed my boarding passes (and later discovered I was missing one for each flight), rushed through security with the boys and our stuff and got to our gate, the plane was getting ready to leave. We were lucky that the door had not been shut yet and we had just enough time to RUN down the ramp and get into our seats before the plane pulled away from the gate. About an hour and a half later we landed in Houston, gathered our things and prepared to change terminals. An electric cart met us at the plane and took us as far as the bus that runs between terminals. After that, I was on my own. We were dropped off at our connecting terminal and discovered our flight was leaving from the extreme opposite end from where we had been dropped off. By the time I reached the gate, lugging four carry on items, a large car seat and two small (easily distracted) boys, I was in serious pain. I had started having back spasms and couldn't even think of getting comfortable enough to rest for fear that the boys would wander off and be snatched. We had time to grab a quick bite to eat and get loaded onto our plane.

Flight number 50 from Houston to Atlanta was where my travel experience made a turn for the better. After we pulled away from the gate the safety demonstration started and my boys (thankfully) fell asleep. My back spasms were getting worse and I could feel my muscle strength going as the pain got worse. Taking a muscle relaxer when I still had one more connection to make lugging the kids was not a viable option so I made the next best choice. When the flight attendants came by with the drink cart I ordered a $7 mini-bottle of rum and some orange juice. Halfway through my drink I could feel the knots starting to ease a little, but was still fairly certain I would be unable to make my connecting flight on time. As I was lost in thought trying to figure out a way to make my body cooperate, an angel appeared at my side in the form of a flight attendant named Gwen. She had the flight roster in hand and had noticed that I had requested help between gates. I explained a little about Fibromyalgia and that I was traveling alone with my two small boys. She asked if there was anything that she or the rest of the crew could do to help with the Fibro flare I was having, and I explained that I had purchased rum for that because it was as close to a muscle relaxer as I was willing to take with no one to help me with the boys. We chatted for awhile and she asked where my hubby was (because we are apparently a very obvious military family) and I filled her in a bit more about that. She took the time to thank me for my husband's service and our family's sacrifice (which always makes me tear up a bit) and then excused herself to speak with the pilot. When she came back, she let me know that they had radioed ahead for two wheelchair escorts to be waiting for us. One for the boys and I, the other for all our stuff. The flight crew also comped my drink for the flight. As our plane landed I realized I had about 30 minutes to get to my next flight... two concourses over.

The pilot came over the speaker to thank everyone for flying with Delta and their partners and then added a special thank you to the military members and their families on the flight. I felt the tears well up again as everyone on board burst into applause to show their appreciation. Gwen asked if I thought I could make it to the end of the ramp where the wheelchairs would be waiting and I gathered my things to make as much of a dash as possible. The gentleman who had been seated behind me was kind enough to take two bags to carry up the ramp for me and as I neared the front of the plane I noticed that the pilot himself had come out of the cockpit to help us up the ramp! As I settled into the wheelchair the pilot handed my youngest son to me and, again thanked us for our family's sacrifice. I thanked him as I was swiftly wheeled away and (once again) felt my eyes water over the acknowledgement. We made our connecting flight with, quite literally, seconds to spare. The rest of our flight home was thankfully uneventful and when we landed I was too happy to be home to even care that some of my luggage did not arrive at the same time we did!

So, to the ENTIRE staff of flight 50 from Houston to Atlanta on January 10th: Thank you from the bottom of my heart! You made a very stressful day so much better, and I do not have words to adequately express my gratitude. You have made my opinion of your employer go up quite a bit and I am so pleased and thankful that you were all SO WONDERFUL to my boys and I.

God Bless Every One Of You!

And to Gwen N.:

You Rock! Thank you for your compassion and understanding. You blessed my heart that day...

The Good, The Bad & The Future...

So, today is my birthday and in two days I fly back to North Carolina. I am both happy and sad. I am looking forward to being in my own space again (and WAY happy that I will have my good bed back soon). Darrell gets 18 days of R&R shortly after the boys and I get back home and I am ecstatic about being in my husband's arms again! I'm looking forward to restoring the routine that helps the boys behavior so much, but has been impossible to keep during our visit to Texas.

I am NOT looking forward to leaving my daughter behind again. I know that being here with my Mom & Dad is truly in her best interest right now. I know that the same routine the boys thrive under in North Carolina would not work as well for Samantha. I know that my parents do a brilliant job of caring for her and creating an environment where she has grown and flourished. I know that she has reached SO MANY developmental milestones since she moved in with them, and I am certain she would not have reached them as quickly as she has, had it not been for the encouragement, love and support that she receives here. (Not just from my parents and grandparents, but from our entire church family and close friends.)

Even knowing that I am doing the best thing I can for her right now, it breaks my heart for her to be away from us. Her brothers love her and enjoy playing with her more than I could have ever dreamed they would, and they miss her almost as much as I do when she isn't with us. I think that it wouldn't hurt so much to leave her here if I thought I could meet her needs as well or better than they do here... But that is the kicker. KNOWING that I am not able to meet my beautiful girl's needs (and that someone else can) kills me inside. And I am so afraid of the day when she will get too big for any of us to properly meet her needs... at least right now she is with people who love her and will protect her from the bad and ugly things in this world. I pray that God takes us all home long before I have to put my daughter's care into the hands of strangers.

Bring Him Home Santa

Hoping you all have a very blessed Christmas and a safe and happy New Year!

Hello Blogland!

I promise I did not fall completely off the face of the planet... just mostly.

I'm back in Texas and to tell you the truth I have been having a rough time here. It isn't really that anyone has said or done anything wrong. My family has been wonderful and I have only had a few minor "family issues". I think most of it stems from not having my own space. I'm basically sleeping in my grandfather's closet. Now before you think "how terrible!" let me explain that it IS a bedroom with a queen sized bed (horribly uncomfortable mattress, but I'll live). But I don't really have the luxury of privacy while I'm here. All the dresser drawers and closet space in the spare room are Pop's while all the rest of the closets in the house are Mam's. (Yes, I come by my clothing obsession genetically.) So any time he needs to get ready for church or anything he has to come into the room and move my stuff around to GET to his stuff.

Samantha's operation went well. We think her VNS stopped working the day before her operation but she is doing great now. We drove into Houston the same weekend that Hurricane Ike hit so finding a hotel with electricity, running water AND no "new" trees in the lobby (via the roof) was a trick! After driving around Houston for three hours we finally found one with a generator. The elevator was out so we all (Mom, Dad, Me, Samantha, Auron AND Xander) had to get up and down the stairs, but we lucked out and they had a room on the second floor. Dad also had his visit with MD Anderson while we were in Houston and they think he is now a great candidate for surgical intervention! (This increases his ten year survival odds from 5% here to closer to 70% there!) Sam has another minor operation coming up in a few weeks. She has grown so much in the past ten months that her feeding tube is too small and causing her tummy to bleed from the pressure. It is only slightly more invasive then, for example, changing out a tongue ring.

I am going to share some photos of the kids in their costumes because I'm not sure I will have the chance to blog again before the end of the month. I took these to send in a Halloween themed care package to Darrell! I hope everyone is doing well and, as always, we could use all the prayers and good thoughts you could send our way!

Until next time, God Bless!

My Beautiful Kiddos...

My Beautiful Kiddos all in one place again!

Just as it should be (if life were perfect and Darrell was home).

Samantha's operation has been postponed (insurance complications) so PLEASE keep her in your prayers. We need to have her VNS replaced before the battery completely dies so that her seizures do not come blaring back at full throttle. Her brain is no longer used to that level of seizure activity and a sudden return to it could prove fatal very quickly. We hope that we can get everything worked out and rescheduled for next week (the same time Dad has to be there for his Cancer check up).

So please just pray that everything goes well and the timing works out!