GREAT NEWS!!

Gage and I traveled go Greenville yesterday for his cardiology check up, and I was very releaved when his Dr. informed me that he NO LONGER has to see her!!! What a great feeling it is to finally hear some good news!!!
Dr. Lurito saw Gage on the first day he was born, and explained to us the MANY issues that Gage had with his heart, and now 2 1/2 yrs later through many ups and downs has released him from her care!!!
Isnt God amazing... he was able to heal Gages heart and no surgery was required!! I truely believe that God puts you in the place that you need to be and having Dr. Lurito has been a true blessing! She did far more for Gage than just her duty as a Cardiologist and for that I will be forever greatfull!!
So... Its one Dr. scratched off our very long list.... and I couldnt be happier!!!
*BETH*

From DUMC ICU...Well we have had an eventful 2 days so far starting yesterday very very early around 3-30am. Pam, Beth, ML and Gage drove up together and I followed because of the storm. ML and Pam were going to come home after the surgery.  Aunt Kim started the day off really bad by hitting a raccoon and killing it-----not knowing until Beth got in the truck last night about 9-930 that there was blood all down the passenger side.  I was lucky a cop did not pull me over for suspicious behavior.  Anyway, Jay Hardison and Kyle, preachers from Maple Grove who we love made the trip and prayed with us, and I had Mrs Mavis West along with a lot of you out there praying for my little sugar plum.  I can tell you it has been ROUGH.  He has been in a lot of pain. His tongue is black and blue, and yesterday I could not return answer any calls b/c Beth and I were so busy trying to rock, pat his behind, switch places in rocking/holding/restraining, he was miserable and they could not get ahead of his pain. Aunt Kim cried. Beth cried. and then we made the staff cry. After A LONG 4-5 hours and a lot of pain medications he FINALLY settled to a whimper and when we left with strict instructions to call us b/c we were across the street he was peaceful.  It was awful. You see Gage has a high pain tolerance. I tell you all that even after the seizures he comes out smiling, but he was in pain.  Beth and I arrived to the motel and I left something in the truck so I walk back outside. I am not scared b/c I am in a mood, and if they mess with me watch out.  So when I was walking out there was this Axel Rose-wanna be (long hair, head band, singing rock music in the hall outside of my room) walking up and down the hall. I really am OK with this. He is not singing loud, and so what. So when I come back I am walking up the stairs and there he is again walking up and down the hall, muttering/singing.  He is walking towards me.  I walk past this door and his girl is leaning out- black hair-80s rocker (they are probably 18-20yr old) looking out at me. I look up at him and he is flipping open a switch blade. It ticks me off. I look him in the face and keep walking to my room go straight in and call the front desk.  Beth is like WHAT!!!!!!!!...... b/c I am kind of ticked and calm.  The front desk guy says he is checking it out. I call him back and he says that the guy told him- yes he had a knife and he will keep it put up. I suppose he will keep it up until he stabs me... So sleeping did not go so well. We locked up, we laughed hysterically, called home and described the people, and I liked the 80s rock era....... We returned to hospital today.....Gage had a bad pain night, but is better this am. The plan is to decrease his oxygen and see if he can handle it. If he can then they are already giving him only GT pain meds so they may send us home this afternoon anyway. There is nothing they can do b/c we are doing everything here and the seizure meds are off schedule and messed up.....sooooo.....If not we will go to the regular floor.  We are blessed because there is so much heartache around us, and yet the Lord is all around us.  Gage is a Miracle. Thank you all and We love you. We hope you all survived the storm.  Thanks for all you do for our family. I have received multiple calls from my friends and family and I feel your love. You are my TRUE blue. God Bless.  Aunt Kim loves her sugar plum and you all hug your love ones today. Life is precious.
*BETH*

Well, we went to pre op and to see Dr Gallentine on 8-24-2010 tuesday.  We had to get up at 400am and be on the road by the latest 5am. Beth said Gage was up at 3am and then he had the nerve to sleep all the way to Duke. I could hear him snoring in the back seat.  It was horrible weather raining cats and dogs on the way up there and we took a new route trying to bypass the morning commute.  WOW... Anyway, I did not get any road rage, and we arrived on time. Beth and I have this drive down and the packing and unpacking to science.  It is like a combat mission.  I grabbed the parking ticket, She gets the diaper bag, I get the stroller out, she sets it up while get the suction machine and feeding machine, and medication bags out. I blindly lean back without looking and hand them to her leaning over a sleeping Gage, and she arranges them on the stroller as I undo Gage from the car seat. I pick him up and we both strap him in. We shove his pacifier in his mouth, put his blanket over him and over my shoulder I hit the lock button. We always park on the 3rd parking level. This is the routine. Automatic. All of this is scary b/c sometimes we do not even speak when it is so early except we always say "do you have his pacifier" because a life without it is not a good a day.  Remember previously Aunt Kim bought about 5-6 and went to 2-3 stores looking for the RIGHT ones after we lost one after a cookie swallow. Aunt Kim today had trouble on the escalator. I almost made Beth take a header down the steps.  I split two steps-Gage slept thru it all- but Beth and I were laughing so hard and finally I appeared to have awakened fully.  Wow, it was early and I am tired.  Anyway,,,enough complaining. We go in and register and are pre-op greeting nurses, techs now by familiar faces and names that know us now. But even though these are familiar it NEVER gets easier knowing the reason we are here. NEVER. I mean we go thru the steps like a line dance but WOW......we sit and wait for our names, we know whats next the weight, vital signs, medications checks, and then find us a room. As Beth is up there registering Gage, and we fill out paperwork-because Beth will go to the bathroom and I will complete the paperwork ----I will sometimes look at Gage and think "What a miracle, what a blessing, BUT, BUT, BUT, BUT.......Lord cant you just stop these seizures-I mean the MDs here on earth say he has what 5years of life and we have used 2 years and 3 months can he not be seizure free the rest of the time?; OR Lord now their telling us he is not breathing 16 seconds out of 60seconds on an average in a minute---can you not stop that?;;; Now Lord, you have us worrying that his skull is too small and not growing can you not help Gage with this?  Doesn't the little guy have enough going on?  I mean Lord I am FULLY AWARE THAT ONLY YOU KNOW THE DATE, HOUR AND TIME WE WILL LEAVE THIS WORLD, but Gage cant keep on like this. I trust you to be there for him; to guide those who are administering care to him; and I want you to give our family strength to help Gage and listen to what you want us to hear and to do what we have to help Gage."  During all of this time I feel like the majority of the time I have been on my knees or looking up to the sky looking for guidance.  Even in my Aunt Rambo stages-I look up, close my eyes begging for patience and understanding and the ability to hold my tongue that can be a sword of destruction to all I come in contact to.  God Bless my husband.  He takes it and only recently has demanded my time again so that we sit quietly by Roanoke River or Rodanthe shores and discuss why we love all the things we love.  He is so smart. I truly and a blessed woman. We registered Gage for his surgery-no surprises for Sept 2nd at Duke. He will be in Pediatric Intensive Care after the surgery due to all they procedures they will be doing. We will have to stay in a motel across the street. The seizure MD increased the VNS device. Gage had several hard seizures while we were there. No surprise.  We had an uneventful drive home.  I will let you know any other news.......thanks for all your prayers.......it is just so hard.  I still say I am sooooooo blessed. 
*BETH*

Well hello everyone....Gage, Beth and Aunt Kim traveled to Duke today to meet with the ENT  Dr Raynor (Ears, Nose and Throat MD) about the sleep apnea and tonsils issue.  Nana was with them on the last office visit so this was Aunt Kim's first visit with this MD.  Ok, I know several of you out there said "Oh, No."  Everything went fine-the ride up, the escalator, registering, and then........... they forgot us. Or at least Aunt Kim thought they did.  We arrived around 1040 and we finally saw the MD around 1220, so you can imagine all that went down in between all that time. First of all, I can tell you the Lord is developing my patience. I lasted with Gage a pretty long time in the waiting area with laying Gage on the couch, twirling him around my head, bouncing, patting, he had a feeding by GT, Beth bounced and then..........Aunt Rambo came out. I was just getting ready to get up when the little girl who weighed him and did his temp and set us back in the waiting area for a room came out getting ready to go to lunch saw my eyes and she turned around went back in the back. She came back out and said "we have not forgotten you you will be called next".  Well 25 minutes and about 2 clients later being called Aunt Rambo got up, and as I was walking up the same girl got up as she was calling that 2nd client and said"really we have not forgotten you".  We were immediately called next, and I am steaming, b/c a drug representative has walked by (i don't think Beth even saw) and has bags of food for the MD and staff. I am thinking to myself-"That doctor better not put one morsel in her mouth before she sees my little man or I will feed the rest to her very quickly and then do the Heimlich on her". I know that sounds bad, but you know our time is as precious as hers, and Gage had already had several seizures, we are hungry to, and Beth told me the last time this MD only spent a few seconds with them. So Aunt Kim is primed already. Dr Raynor better not eat before she sees Gage and tells us the plan about the sleep study and sleep apnea.  You know how some people their faces speak volumes-I think mine spoke A-Z of the encyclopedia set. I was not ugly, nor did I speak or act ugly to anyone however the MD was not going to whiz in and out in 5 seconds to get to her sandwich the drug rep had for her until we had a plan.  So..... It amazes me over and over again that seizures when Gage has them that the MDs/assistants all look at us to fix it.  Gage had a seizure during the exam and the medical student never got off his chair but told Beth "well, you sure were quick doing that" rubbing the magnet over the VNS,  I know it is about 1230-1245 by now by Aunt Kim is thinking you are such an IDIOT. I apologize. Anyway, the MD comes in and tells us that the sleep study for a NORMAL CHILD would be one apnea period in one minute. Gage had 16 in one minute. Meaning in 60 seconds he had 16 seconds of apnea-not good. So not only will his tonsils/adenoids need to come out, but during the surgery they will perform a bronchoscopy and use a laryngoscope to view larynx, trachea, tongue, lungs etc... and further surgery made be required.  His tongue has always been too large and he has a high palate and the muscles around his throat are weak.  The MD states she make have to scar up the area around his tongue to strengthen the muscles/tone to prevent it from falling back when he goes into REM sleep or deep sleep.  We are scheduled for pre op next tues at 8 so we will leave home before Papa's chickens get up, and we see Dr Gallentine the seizure MD too at 9am. Gage will stay naked all day tuesday.  We will have the surgery on Sept 2 at Duke and Gage will have to stay in Pediatric Intensive Care Unit for at least one night and hopefully come home or maybe not the next day depending on what happens and how involved the procedure was.  After all this is complete we will have another sleep study to see how he is doing, and go from there.  It was a long day emotionally and physically.  We again ask for your continued prayers that God is with Gage, the MD and the assistants, and Beth and ML and kids as they face yet again surgery to make him more comfortable.  If you look at your watch and hold your breath every 16 seconds out of 60 it is quite exhausting. But they believe that this is causing Gage to have more seizures due to the lack of oxygen and build up of CO2 so it must be done.  Here is another thing that God has brought us to and will get us thru. It is amazing to me that this little child suffers so much yet smiles so much.  I mean we are asked the question every time "Is he in pain today" and you really have to say No b/c he truly does not seem to be.  He can have a hard seizure and then smile as he drifts off to sleep. I still say the Lord and Gage are talking during these times where we are telling him it is OK and rubbing his little arms, and waving the magnet over his chest, and then boom he comes out of it and looks at you and smiles.  I choose to believe it.  Just like I choose to believe that Jesus is the Christ the Son of the Living God.  Well, I gotta go do housework. Have a great weekend and be blessed because I am...
*BETH*

Hello all....Gage had a sleep apnea study at Duke on 8-9-Monday night. Beth and I arrived with Gage with 3 back packs full of stuff for one night.  We started laughing because there was this girl and her father there and she was for the study too and she had no back pack-nothing with her. Beth and I needed a U-Haul for the items we were moving in. We were prepared. We were put in a regular exam room (during the day) and at night they move in 2 beds. One bed for Gage and one for ?beth and I?  Well poor Gage gets hooked up to all kinds of probes with cement stuff on his head, cheeks, mikes-snoring on his throat and nose; 2-types of cannulas up his nose; 2 tight belts-one around his chest and the other around his waist; stickers on both legs with wires; chest wires; and a probe on his big toe taped really well.  Then the nice lady  Ann wraps his whole head in Kerlix gauze so only his eyes, mouth, nose visible and says" Ok, he can sleep now".......right Lady....lay him on a bed of nails and let the band play.  So now the sleeping arrangement, Beth takes the other bed and Aunt Kim gets in bed with Gage facing the opposite direction so I can see the monitors and keep Gage from pulling all the stuff off his face and feet.  Gage does not have fine motor skills but he rubs with his fists over and over. He also likes to keep one leg out to sleep (like his Aunt Kim) so I made sure that happened. However, this bed did not want to cooperate....it was a pressure bed that made a noise and adjusted every time you moved weight. Imagine every time I lean up to keep Gage's hands off his face this groaning bed re adjusting the weight and trying to sleep. I was ready to rip the cord out of the wall.  Finally Ann came in and cut that off. Also, Gage decided that all night he would drop his oxygen levels (at one point below 60% in the 50's) and we are not supposed to wake him. Ann comes in and tells us that she called the MD and they may want us to go to ER. Then we change several tubings/monitor leads.  My little sugar plum does great he is trying to sleep.  At one point I am staring into the dark and realize that it is probably cold enough for me to spit ice cubes so of course I climb out over the rail into the chair and Ann sees me on the camera and she comes in later and said that it scared her a little but she figured it was OK because I was a nurse. But I had to wrap Gage up and Beth was in a fetal position so I went to get more blankets.  Aunt Kim walked all over Duke 2-5floors like I owned the joint and I also identified some HIPAA violations but that is for another day. At one point I am in my warm up pants and glasses and I KNOW my hair is looking great b/c it is about 4-430am and we are surely headed to the ER and I need Diet Coke and I see a security guard in the elevator and he doesn't say a word. I am having a deja vu moment from Pitt Hospital. Anyway we end up in the ER b/c Gage has apnea, and as we are coming into the ER there are medal detectors for people and your things. What has this world become???? Anyway, we have so much stuff Aunt Kim's backpack has to be stuffed by the guard thru the machine. Poor Gage was shoved thru first waiting on the rest of us.  We get in the ER and they tell us we are being admitted but the beds are really full. Aunt Kim says as long as it is not the 7th floor it is OK, and then things screech to a halt.  The MD comes back and they decide to let us leave, and they will read the entire study-and call us on the way home if he has greater than 10%apnea during the study and which ever hospital we are nearer to we will go to-PCMH or DUKE.  OR  They will call and oxygen may delivered to the house, but we know Gage's tonsils have to come out sooner than expected.  Well, the MD called and he was borderline on the 10%apnea so they discussed with Dr Strope pulmonolgist in Greenville and decided to speed up taking his tonsils out. We see the ENT at Duke on 8-20 I suppose for pre op I am not for sure, but at least to discuss options. And then after the tonsils removed, a repeat sleep study to see if that was the only reason for apnea. It was an emotional time sitting there watching Gage's monitors and knowing he was not breathing and not waking him up. Actually one time I could not take it and I did, but that was about 515 or so and the test was almost over.  I laid there at night staring at my little man and all he was hooked up to and again questioned why.  And in the same breath as why I am begging for grace and mercy and healing.  I only want Gage to be comfortable. I only want Gage not to suffer or struggle and have the best this life can give him and we can give him.  He would throw his arm or leg over mine as he slept and I would smile because he loves his Aunt Kim. I am blessed beyond belief I tell you. Gage has endured things in his life that a lot of us as adults would whine and moan about.  I love Gage and all my nephews and nieces with all my heart. Ever since the first day Gage was born we knew our family would never be the same.  We just did not know how much.  You never know until you are tested how you will respond-will you handle the situation; will you freak out; what will you do; who will help? If we could all know "The story or ending of our entire lives" would we want too? I think the Lord saves us from that, and gives us hours and minutes to handle it a little at a time because we are human and couldn't handle the entire story at one time. If we knew, we wouldn't take another step forward but would stay stationary dreading certain things, rushing other things, so the Lord gives us moments-minutes in time to handle and deal with and he is there with us thru the good and bad.  We draw closer, and we are call out to him more during the bad times but he is there during the good times too never leaving us.  When I don't feel God close to me it is because I have stepped away from him.  So everyday is but a small piece or moment in my life story, and it is what the Lord thinks I can handle right now and when I cant handle it I have true friends and family that lift me up and are there for me.  It is easy to get frustrated, angry, worried and lost in this life. But I can tell you that every single one of my family brings something different to help with Gage.  The most difficult thing for all of us, including myself, is realizing the limitations of others and not condemning them for those limitations but lifting up the good things they can do. We are quick to point out the thorns in others eyes, but we overlook the planks in our own eyes.  I have also tried (and I am not always successful) to try and not say something I know is meant only to hurt others.  It is such a fine line sometimes when you are in the stressful situation (and there are so many families like us and in worse situations than us) where you get frustrated at the doctors, other family members and yes even the Lord himself. I know some of you just gasped. I do get frustrated at the Lord, and I cry out "Why", and I question him, and I bargain, and I beg, and I plead, and I lay my soul bare; if he would only help..........but then something happens and Gage gets a good day or I see a beautiful sunrise and I know that Lord hasn't left me.  Beth and ML have had to do things-medically, physically, emotionally that seem impossible to handle, and will continue to face the seemingly insurmountable issues regarding Gage's care and caring for Taylor, Cody and Ryan while trying to live life.  As hard as it has been for Aunt Kim, it is no where near the emotional roller coaster that never ends for them.  But do not pity, do not shed tears, because to do so would be to discount the wonderful times and special times and blessings. And THAT is unacceptable. I want people to realize that this email that I write is my perspective, Aunt Kim's, my feelings, and it is my cowards way out at work where I can tell about Gage's visits/struggles one time in one email to my friends and co workers and not cry all day.  I think that Beth, ML, Taylor, Cody, and Ryan have all made huge adjustments in their lives. Gage has made things better in some respect, and yes more difficult in other respects. But NONE of us would change our lives. Gage is our family and our life. Any person who has a child that requires extra care like Gage brings his own type of joys to the mix of a family.  I do not think one of us would say it has been easy, especially for Beth and ML, but we were given Gage as a gift from God and what we do with this gift is our purpose in this life.  We have to listen for God's directions and instructions. So please continue to keep Gage, Beth and ML and their family in your prayers; and I ask a special prayer for the rest of our family who are trying to live in a way pleasing to the Lord, honoring our Mothers and Fathers, and respecting and loving each other and our friends and families for all they have done for Gage behind the scenes on a daily basis.  We appreciate all the love and prayers sent our way and continue to need them. I will try to keep you updated on the tonsil situation and feel sure we will not be on the 7th floor at Duke or maybe we will who knows...maybe their feeling lucky. 
*BETH*

I hope everyone had a great July 4th and honored a veteran or service personnel at whatever function you were enjoying.  Chuck and I with our good friends Chris and Lynn and Little J were on Vacation at Rodanthe and there was a cook out; the prayer before we all started eating was awesome.  All military personnel were allowed to go first thru the line.  Anyway.... Reminding your kids the "Why" of these holidays is so important, and I told Hattie.  We are back from vacation and today Monday 7-12-2010 the day after Aunt Lisa's Birthday, Beth, Gage and I traveled to Duke.  Gage has not been doing so well. He has had multiple seizures, and they had to use Diastat last night.  It seems that just about every time he is startled or wakes up he goes into a seizure;  in addition to the seizures that regularly occur during the day. Beth called the on call Ped Neuro MD Wed nite due to seizures and his medications were adjusted until today.  Then she had to call Thurs to the nephrologist on call MD due to the fact that the change in the blood pressure meds was making him sleep a lot more than usual and constipation.  (Maybe Gage would not want me to tell you he has constipation). The thing is that when Gage wakes up from a dead sleep he goes into a hard seizure. Kinda scary at times. So we had to get up 4-430am Monday after vacation, and head to Duke. We arrived in record time because I believe my truck could drive itself.  While we were waiting, Gage was in Aunt Kim's arms sleeping and he suddenly wakes up and starts seizing and he is having these apnea periods (stops breathing) then gasping like he comes up for air.  Beth is wanding his VNS, I am rubbing and talking to him and the Lord, and counting, and Gage has these seizures one after another. Eventually he settles, because we are ready with the Diastat, etc...This is a Moment in the Life of Gage. Terrifying. Gripping, and Not a Thing you can do but Pray it goes away.  We see the nephrologist and Gage's blood pressure readings which Meme did while Aunt Kim was on vacation have been good, so no changes. His echo from last week was good so no damage to the heart. Dr Gallentine (who we love) comes in and we tell him all our concerns. I can tell he knows we are frustrated and he tells us we are early into the VNS adjustments. We have 3 months at least of driving up here every 2 weeks and he will adjust today. We tell him about today, and I describe in detail. He has an old timey doctor's bag (black one) yet he is young;  he listens to Gage- looks at VNS with computer and does adjustments increasing electric activity.  Then he tells us that Gage need to see a Ear Nose and Throat MD because of the apnea, secretions, coughing, etc...and that he has thought about this and that when Gage is asleep secretions collect or he gets in a position and his tonsils may be causing apnea and causing stress therefore seizure induction. So we are scheduled to see ENT 7/30/2010 and the sleep study is 8/9/2010.  We return to see Dr Gallentine on 7/26/2010.  We are also before waking him up, moving him etc---to use the magnet over the VNS and give him a JOLT to prevent the startle seizures maybe.  Beth has lots to think of.. As we left there, Aunt Kim was pushing Gage in the stroller on the escalator (yes the dreaded escalator) and Beth who is supposed to get on first and hold the front of the stroller.  Well....she almost takes a dive to the bottom.  Aunt Kim told Gage we would meet her at the bottom because he was my main priority and I would help her when I got down there. Luckily she only tripped " a little bit" and recovered.  She claims that her pocketbook weight threw her off and pulled her over?  OK.  Gage had some episodes on the way home. You know I write all of this stuff above about a 2 year old--JOLTing Gage, Apnea in the MD office, giving Gage a swipe of the magnet to deliver electricity to his vagal nerve before he wakes up fully to prevent a seizure and I am in auto mode most days.  You know I sat thru communion yesterday in church and cried the entire time for various reasons. I know the Lord has a plan for Gage and for me and for you too.  But Bless my husband who has to sit there as I snort and sniff thru communion and he doesn't know how to help.  My heart is broken but Dr Gallentine assures me that we have other things we are going to do get Gage some relief.  AND I KNOW that the LORD has a plan.  I just wish I knew what it was, but then again maybe I am better off not knowing.  I love the Lord and I love my family/friends and my sugar plum......I am back to the grind tomorrow...God Bless.
*BETH*

It has been a very interesting day.  Beth, Gage, Cody, and I started the day leaving around 5-530am this morning to get to Duke for 2 appts. One appt with Dr Gallentine the neurologist and the other was to Dr Rasheed B.....(I cant say or spell his last name but he is really nice so far and highly recommended).  As you read this email keep in mind that Cody is Gage's 10 year old brother who calls 911, and leaves the room whenever anything medical is going on with Gage.  Cody gets weak, and faints. Just keep this in mind as you read on.... Gage had a pretty good trip up to Duke, but over the last week and weekend he has had multiple seizures (big and little) and wretching.  It is a little discouraging due to VNS being placed and still having such great hope that these will get better.  I mean we are not asking for them to go away, b/c we know that he will have seizures but give the my little sugar plum a break.  I kept him a little Friday with his other brother Ryan ( who tells me all the time as we are looking at Gage that Gage is so sweet he could eat him with a spoon).  During the time I kept him, Gage had 3 seizures and one was when he was in a deep sleep and came out in a hard seizure.  The magnet did not help with that seizure, but it helps with some of the others.  It is really heart wrenching to see him sleeping so peacefully and then be panting and having a seizure--and you have to remember to look at your watch time it, put the magnet and look for results, grab the emergency Diastat bag just in case and the suction, and the whole time you are telling Gage it is OK  and praying to the Lord to take it away and for Satan to leave because he has no hold on this child of God, and then you count and look making sure he is breathing b/c that may need to come next.  After the episode when Gage is smiling, you want someone to walk in, rub you on the shoulder, and tell you it really is going to be OK. But you know the Lord is there and you keep on going, because otherwise how would we ever get up to do it again. Anyway talking about today's visit, before Dr Gallentine walked into the room these 2 interns walked in and on the white coat was Psychiatry..... I thought "Oh well, Dr Gallentine knows that Beth and I have finally lost it and need a family consult". But it turns out this fellow was truly just doing the history and physical exam. Well Cody was sitting in a corner chair, well away from the table where Gage was and the intern was checking Gage's reflexes with the reflex hammer.  Out of the corner of my eye I see Cody kind of sliding to the floor.  The interns are walking out and I go over to Cody and he tells Aunt Kim "I got really weak in the legs when that hammer came out".  We put him in a chair and legs up, and Beth and I were laughing so hard.  So we try and prepare Cody for the next phase when Dr Gallentine comes in and holds the device over Gage's chest (no needles etc) and then we jokingly tell him the other MD was a psychiatrist and that maybe they could work on his phobia while we are here.  Cody is laughing but staying away from the treatment table.  Sure enough when the MDs come in the Psychiatrist comes and sits right beside Cody and Cody immediately goes into his problem and the DX is Cave man Syndrome.  We do not know if this is true but Cody now knows why he is the way he is.  Meanwhile Gage had 2 undissolved sutures pulled out of his neck and chest without a whimper while his brother received "therapy" in the corner of the room. Dr Gallentine said that VNS and Gage with his multitype seizures will require trial and error, and he went up on the voltage of the device and the magnet.  We will leave his medications alone for now. We return in 2 weeks, and hope and pray for better news.  We also saw Dr Rasheed who changed Gage's blood pressure medication dose and added another due to wheezing.  We also had to go get a heart echocardiogram to make sure that Gage's heart is not having left sided enlargement or thickening, and we will hear back from that later this week.  This is a side effect and problem with his medications and diagnosis.  Cody was so proud that he did really well with the echo "but that valve stuff opening and closing-he had to go sit down" Remember he has Cave man Syndrome.Gage had a few seizures on the way home, and Aunt Kim thought Cody was having a seizure but he was actually dancing in the seat.  Beth and I were laughing and Cody said he learned to dance from Ryan who saw it on an Elvis film.  It was NOT pretty.  I told Cody to go ask Papa about dancing, because what he was doing had to be related to the Cave man diagnosis.  Please continue to pray for Beth and Gage and this VNS that it will stop some of these seizures. It is heartbreaking, frustrating, and devastating to watch these one after another sometimes and what it does to my little sugar plum's body.  It is as exhausting as watching Cody struggle to dance.  We continue to be blessed daily, and I just tell you don't ever take a healthy aggravating kid for granted. We know the Lord is working in all of us and patience has NEVER been one of my virtues.  As stressful as it is, the Lord gives us the Cave man Syndrome moments and Cody's solid gold dancing moves to make a not so great day-a memorable day.  That is what we hold on to.  You can always look around and find SOMETHING to smile about.  Thanks for everything,
*BETH*

Has it really only been one day?? Wow it feels like 2-3 days since the last email and Gage was preparing to get his VNS. We have just arrived home from Duke, and we are all glad to be back home.  ML, Beth and Gage and I have had a very emotional and action packed time.  Yet, it went by at warp speed. I can honestly say it NEVER gets easier preparing Gage for surgery or a procedure etc....you would think we would become pros at this but no.  Aunt Kim was very glad to see Preacher Jay and Ms. Patsy, Amy and the boys to divert me from my mental breakdown.  When Jay walked up I was holding Gage and we were going over " Hotel, Hotel, that is where we want to be tonight. Hotel" Jay thought he was going to have to have me committed or sedated.  Sedated did not sound bad.  Jay and Amy both got to pray for us and I know a lot of people were praying for us back home and everywhere else.  He went in and they called for extra help for his hard IV.  Well,, that is a little nerve racking, but I am grateful. However, when it was all said and done he was stuck at least 3 times in his foot before they got an IV in his foot, and he had an IV in the bottom side of his wrist.  He has an incision on the left side of his neck and the MD hid the device really well on the left side of his chest but kind of under his arm because Gage likes chest physical therapy.  He was very sedated even when we were allowed to leave, and very agitated at times.  You cant grab him beneath his arms for a while, and Beth told me the nurse did while I was gone.  She was very lucky I did not see her.  We made it to the hotel after 6pm and we were on the second floor and the elevator was broken. Great. So, ML and I toted all the bags, totes, suction machine, portable crib (which Gage did not use), and Beth had Gage.  Gage laid on the bed and he looked comfortable. I went to TGI fridays and got food lots of it.....when we went to bed it was Gage and I in one bed with chairs/pillows/rails on one side and ML and Beth in the other bed at 1030-11pm.  At 1am Gage awakened wretching and in a seizure. We used the magnet, and suctioned him, and can I tell you at 1am this is NOT how I want to wake up.  So I laid there listening. waiting, and rubbed his back, head, patted, anything until about 4am when Beth got in bed with him and I got on the little couch they had in the room.  This still still did not stop me from jumping up at the slightest cough....I don't know how Beth and ML do it...anyway. Around 6am I got my shower and got Gage out of bed set him in the recliner with me and the suction machine and he slept better for about 1 1/2hours.......Now I am home and ready to fall face down, because I am not used to this. We have to go back in 2 weeks to have the device increased in intensity. It was funny because right after they gave me the magnets I put the box in my backpack with my wallet and I start reading all the material. Well after about 30 minutes I read "do not get magnets near debit or credit cards"....I look at my backpack and slowly take them out and go "oh well"............  It also said that if we go thru a metal detection device like at the court house- We have to rush Gage thru.......I laughed as I picture myself pushing Gage at breakneck speed thru a metal detection device in his stroller and cops chasing us........I am tired. Anyway, we have to return to Duke this Friday for another appt. I am going to go lie down.  Bless all of you.  It is very stressful, and Gage is having a lot of discomfort with his belly right now with starting his feedings back and going to the bathroom.  God is in Control.
*BETH*

Today is VNS placement day at Duke. We are to arrive at 11am and the surgery is scheduled at 1pm. Beth had to get up at 430-5am to give Gage his last tube feeding, and then we can give him some Pedialyte at 830 or so on the way up.  ML, Beth and I will be talking to Gage all the way to Duke so that he can spend the night with us at the hotel instead of in a hospital room.  If he is in the hospital room, then guess what Aunt Kim sleeps in a chair patting his little bottom all night or rubbing his head because he likes that......I do not think I will mention that to him because we want him to come to the motel room.  The surgery is to take about 1 1/2 hours total with recovery and then we will know.  If we are allowed to go to the motel then they will let us know if we can go home on Tues;But first,,,,lets get thru today.  And now I have to go before I start crying AGAIN,,,,Pray
*BETH*

May 18th started very very early for Aunt Kim, Beth and my little sugar plum we were rolling out of Jamesville at 530am today for pre-op at Duke.  Gage was all laughs and smiles and in a very good mood, and then he fell asleep when we hit the morning traffic in Raleigh. He snores like a grown man.  He gets that from his Aunt Lisa I think. We helped open up the children's ward at Duke on the third floor.  Gage was great with all the nurses, and right when Dr Grant the surgeon walks in he throws a mini tantrum (Beth's side of the family) and it appears that Aunt Kim is using him like a baton-twisting and turning trying to get him in the correct position so he will be quiet enough so Beth and the Doctor can talk.  As soon as the Doctor shuts the door, he sighs, and leans back and smiles and is as quiet as a mouse in my lap. I look down because I know that he has passed out or something b/c just a few seconds ago he was squirming and making so much noise they had to yell at each other.  But no, he is smiling and he is comfortable now and ready for the next part of this pre-op visit.  We speak to the Child Life Specialist who is very nice and explains everything in great detail from when we arrive Monday at 11am (which I am not thrilled about but we will deal we have a plan not to starve him) and then the surgery is at 1pm. Gage can eat at 5am and then have Pedialyte at 830-930am so it will be a little something on his stomach. We were shown the device (which was not the correct one-too big) but she was young and Aunt Kim let that go b/c the Doctor knows the correct one. Beth and I discussed this on the way home.  We will make sure the right kit is there on Monday. Also, the Doctor has a hospital room for Gage for one night, but if he cooperates..........and Gage and I will discuss this at length.  If he cooperates, we can all stay at the hotel across the street the night and leave the next day. The last thing of the day was the dreaded blood work.....but we had a big smile when we saw the guy who stuck Gage the last time. He on the other hand said "OH NO"...and started laughing..he kept saying..."now where did I get it last time, because there is really nothing here".  Aunt Kim put the pressure on by asking "I hope you are feeling lucky".   We did not bump heads this time, because I was holding Gage, and Beth held Gage's legs. Gage's left foot is the only place we have found to draw blood on a consistent basis. He got it!!! One stick....He cheered, We cheered and Gage waved Bye, Bye.....Gage got to pick a prize for he and Cody his oldest brother b/c both of their birthdays are in the next week or so from the Treasure Chest. Gage got Play Dough-textured items are great for Gage. Like Beans for his hands and feet, feathers, textured toys....So now we have scheduled everything and if he stays well through this week and until Monday at 1pm we will have surgery.  The good Lord has gotten us this far. He has helped Beth and ML make this decision; line up the staff and doctors; made him well enough for the surgery so all we have to do is show up because Gage is in the Lord's hands.  And what big hands they are, because not only is Gage in his hands but ML, Beth and our family is too.  Because I can tell you my heart is broken yet again to think this child that I love has to go thru something/anything ever again that will cause him pain.  Yet I know sometimes we have to do it to make things better, and I put my trust in him knowing he got us this far.  May God continue to give me the strength and will to be a better Christian, wife, daughter, sister, friend and most of all aunt to these great kids of mine. I am blessed beyond belief. 
*BETH*

Well, finally,,, a decision has been made... We go to Duke on May 18 at 8am for pre-op for the VNS placement and then Gage has a birthday two years old on the 20th.  On Monday May 24 we travel to Duke or we may have to go up the 23rd depending on the check in time, and on the 24th the TEAM has been assembled to place the VNS. The team consists of the surgeon Dr Grant, his nurses, general anesthesia, VNS-has their own team of people who are in surgical suite in case of a problem and for initial settings, neurologist Dr Gallentine.  We will stay in the hospital one night (hopefully if Gage cooperates) and then we will come home.  We are very nervous about this because there are so many IFs.....and a 60-80% chance it will help....that seems like a large range to me. I was really trying not to sway Beth and ML about the placement, but Gage has been denied being in the last 2 drug studies due to the increase in his seizure activity. So our options were to 1. Place the VNS   OR 2. Increase the Phenobarbital and current Meds which are very sedative and have side effects that make him very sleepy and really do not reduce the seizures but just ZONK him......that is not a way to live..  So we have to look at Quality of Life for Gage-not Quantity of Life.  We pray this VNS will work.  It will look like a pace maker on the left side of his chest and a wire will extend up into his neck to wrap around the vagal nerve and prevent seizures. We will have to go to Duke every 2 weeks to have it adjusted for a while, and results optimum may take up to a year.  Gage has had a Horrible Seizure weekend with one after another and multiple Diastat (valium) used, and one episode of not breathing for a short period so I think this was the straw that sent them over the edge.  Beth told me Tuesday-yes and plans were made...... I worry-I laugh at those two words b/c I worry all the time. I am probably going to gave a heart attack or nervous breakdown before this is all straight.  Anyway....I have realized I have NO PATIENCE for people who take LIFE for granted; the basic abilities to walk, talk, run, eat on your own should not be taken for granted. Gage will be two in a couple of weeks and he only says a handful of words-mama, dada, no (some say meme); He rolls, He does not sit on his own, He does not walk; He is still cutting teeth-and is cutting multiple ones now. But nothing is easy. There are a whole lot of people out there just like us.  Yet there are people out there who have healthy kids who ignore them, abuse them-physically, and mentally and justify it because they are overworked, under paid or were wronged as kids themselves. These abusers are not always the dregs of the earths but Christians who also justify, and transfer their wrong doings onto others to make themselves feel better.  The one thing I look at when I look at Gage or children is that they are INNOCENT and so much more closer to Christ than I am.  There is nothing between them and the Lord; Life warps us and makes us believe that what we are doing is right. We even quote scripture and make it justify our actions when in truth we know we are wrong.  I will be honest every time we go for a test, surgery, I question the Lord as to WHY? and I KNOW I am not supposed to do this.  Yet I do showing my sinning nature again. I want to know why he has to go thru so much; when is enough enough?; Sometimes I even hold him or pat him and beg to take his pain;  But.....that is not how it goes....My friend Dawn told when Beth her child broke her arm  the other day that it hurt her and I understand this.  Jimmy and Tammy have gotten Gage an evaluation with Shriner's in Greenville, SC but we have a lot of arrangements to make after the VNS.  So we may have to delay this for a while. We another appointment for follow up Duke on May 28 with the Developmental MD/Genetic hopefully we can combine all the VNS tune ups with the other appts so I can work too. Please continue to pray for us and I am sure I will email after pre op because I am nervous and nervous typing. I know that some on my email list have needs and know that I send up prayers daily for all those on my prayer list. I pray in my walk in closet face down every morning (chuck thought I had lost something the first time he saw me there), but it is my place.  I pray on the road driving-but don't close my eyes, and I have found you can just STOP and pray anywhere God listens 24/7.  May God Bless you and Yours and Thank you for all you do for our family and my little sugar plum.
*BETH*

Is there anyone out there who is not presently sick or has not been sick with sinus problems or a cold?  Well, Mr. Gage is sick. He has copious amounts of secretions coming from his nose and throat, and he is coughing which leads to him wretching. Awful.  He started this a little the end of last week but it was worse Saturday when we went to see my Aunt Lois and my mom's sister in Elizabeth City.  It has continued to get worse.  This was the first time some of the family had ever seen Gage and he was still cute as ever.  Gage and Aunt Kim color coordinated in our orange shirts and brown pants.  Nana and Larry drove with Erica, Taylor, and Ryan in the car with them, and Aunt Lisa, Beth and Gage were with Aunt Kim.  Aunt Lisa said at one point she felt like we were in the Indi 500, and that cars were drafting off of Nana.  Nana also ran a poor little old man off the road that was on a scooter, and in Elizabeth City when we took the new highway and she took the old highway.  When we arrived at Aunt Lois, the three kids piled out of the back saying they would never ever ride with her again. They would ride in the back of my truck, in the rain, on the way home because Nana was looking at Aunt Kim on the other road and ran over the bumps that warn you you are running off the road into the grass while they screamed NANA......Larry, of course, said nothing because it is better that way.  The visit with our family was great, and Gage slept most of the time. But when he awakened he started coughing and had copious amounts of thick secretions that required suctioning.  We even had to stop at Wal-mart to get tissue and extra wipes and pampers.  When Gage coughs a lot it leads to that awful wretching which leads to the apnea periods and he has loose stools....so as soon as we were able to get home Aunt kim and Beth went into action mode with the nebulizers and medications.  Gage was glad to get settled in one spot.  Beth called Pediatrician in Greenville today and Papa and Beth took Gage over to Winterville.  Gage's history is in jan and Feb by x-ray he was diagnosed with pneumonia.  So now we have this thick stuff coming from excessive coughing-from his nose and mouth to the point he gets choked on it. We already have been doing nebs and inhalers.  So for you medical people what would you want to know??? Answer:  Does he still have pneumonia?     No, that would make too much sense. The MD walks in and tells Beth he has an ear infection and asks Beth what antibiotic she would like......WHAT??? We could have asked for this over the phone. So needless to say Aunt Kim is calling another pediatrician and asking about them accepting a really cute but complicated case at 2 years of age almost next month.  Aunt Kim is not HAPPY. When Beth asked about x-ray it was blown off and stated "he is wheezing" but they know we are doing nebs and have been.  Jeez......Then I step back and say would this change his treatment plan? It depends on the pneumonia, but it would be nice to know if it is any worse from Feb.  It sounds like I may have to go do some Kung Fu/Rambo skills on someone. It has been a while since I have flexed my muscles.  Anyway, we go to Duke Wed and ML and Beth go with Gage to speak with the surgeon who would place the VNS into Gage's chest.  I will let you know what they decide after this consultation.  The Lord will have a hand in this I know, because he has Gage's name on his heart and in his head.  God is good, and I am blessed.
*BETH*

Well, we have just gotten home from Greenville the last appointment I think of this week and Aunt Kim's behind and mind are very tired.  Gage and I discussed his driving some but Beth would have not of it. Anyway, I will start by telling you all about Wednesday at Duke.  We started the day early and I think we drove up at Aunt Kim's home around 730-8pm or so...It was a long day for my little sugar plum.  The first appointment was with Dr Rice who is the surgeon who put Gage's feeding tube in back in October 2009, and the tube had to be changed. I mean the young lady walked in, Aunt Kim went to Gage's head to hold his hands and kiss on him and talk to him, and the resident was at Gage's feet. The young lady grabbed hold of the tube that was stilled inflated and yanked. I mean it made a popping sound when it came out.  She warned Aunt Kim that I probably did not want to be standing where I was due to too close, she would hit me in the head when she yanked....I wanted to be close so I could get a hold of her should the need arise. Gage handled it like a trooper-He cried just a little,,,but Beth, she was sitting down in a chair far away from the action. I had already warned her that should she pass out we would not help her until Gage was OK that she would have to lay there. So she sat.  Gage now has a Mickey button that Beth and I can change at home every 3 months, and we can manipulate a little better to prevent leaking.  The MDs really spoke highly of how well Beth was keeping the site clean. The next appointment was Dr Gallentine, neurologist, and even though we love him I for one was very apprehensive about this visit. We were going to talk about the implant of the VNS device for seizures.  The resident walks in and asks us about the information we received in the mail and I say oh it was great but you really wanted to challenge us by giving it to us in Spanish huh?  She turned a rainbow of red colors...and we laughed. When Dr Gallentine came in he pretty much told us that this it- there are no new meds currently on the market to try; there are no trials Gage can get into b/c Dr Gallentine begged them to allow Gage to try; and even though the FDA approved VNS for 12yrs old and up since there is no other options--with Dr Gallentine's letters-Gage will be able to get VNS.  However, he was sure that he said over and over--Gage will continue to have seizures; he will NEVER be seizure free (until the Lord takes him home); and there is always the chance VNS will not work.  But this is it.  Gage's seizures are horrible. The Side Effects of the meds are not good.  So.......ML, Beth and I will meet with Dr Grant-neurosurgeon on Wednesday April 28 and discuss the pros and cons and then the decision will be made to do it or not by ML and Beth.  I want to vomit as I sit here and cry but the Lord is in Control and his will be done.  The story has already been written in the heavens were just acting it out according to his will that gives me some comfort.  I do OK as long as I have medical issues to deal with, but when I hold him and love on him and comfort him-I lose it. On with the next appt-the Nephrologist appt went well--the blood pressure meds are Ok, and we will continue with the same dose for now. Aunt Kim will continue to monitor him blood pressure and fax into the MD office.  That was short and sweet, and we never left Dr Gallentine's exam room the other MD just walked in and saw us in the same room.  It had rained and lightening/thunder and we never even knew it because we were up and down in the elevator and in rooms the majority of the day.  Today, Thursday April 22-We saw the Urologist in Greenville and we really like him but 6 months ago when we saw him he said if Gage's testicles had not descended it would require surgery. Well, today the right side was not descended and the left the MD could not even feel it. He told us that he was very very worried about putting Gage under general anesthesia for surgery due to respiratory problems and seizures.  He wants us to watch for a swelling-hernia and when (not if)it happens call and we will do the surgery.  We really like this MD b/c his son also has seizures and sees Dr Gallentine, but ML wants a second opinion at Duke. So we will be making this appt just to be sure that if we get this VNS under general anesthesia maybe we could do both at Duke.  In the waiting area prior to the visit, Gage had a horrible seizure. To the point that Aunt Kim was counting the seconds before giving breaths.  He was sound asleep. There was no warning, and I was rubbing his head b/c he likes it. Beth was filling out paperwork when Gage's eyes pop wide open, he starts gasping-short breaths, eye rolling, crunching extremities-seizure activity, and then he has apnea. I pick him up and am talking calmly to him, saying a little prayer to myself....a preparing myself to know that in a few seconds i will cover my nephews mouth with mine and give him a breath.  I cannot describe this calm I feel at this moment nor the despair I feel as I type this knowing that this is his life. That he can not be left alone; the love that i feel for that little guy is overwhelming.  Anyway, just a little drama in life of Gage. Right after that he got mad because I was holding him so tight; starting breathing like he was supposed to and then yawned and went back to sleep in my arms until he was called to the back soon after.  What a kid; What a blessing to my life; I just wish he would quit testing me on how to do CPR because I am an Instructor.  I am blessed beyond measure, and I know the right decision will be made about the VNS next week and his horrible wretching/coughing.  Thank you for your continued prayers
*BETH*

Praise be to the good Lord. He is good isn't he. That is a statement not a question.  After all of the worry all the way to Greenville and even during the cookie swallow we have some encouraging news. At least the news allows for Speech Therapy to come in and help strengthen the muscles and begin to work with swallowing and speech-maybe Gage will even yell to the Heavens "Aunt Kim". Beth will also be allowed to give him small, very small baby spoonfuls of baby food once or twice a day for taste.  Gage also did not have that awful retching during the exam. He had one small episode afterward but none during. Praise be for prayer, and I know there were prayers surrounding us.  Anyway, when we were sitting in the waiting area I kept telling Gage "this is what we are going to do-you drink the stuff, swallow, and no retching, and we go home".....I kept saying this over and over.....It was very funny because as I was saying this a couple of times Gage raised his eyebrows like Ok I got it or maybe he was saying Aunt kim you have lost it-I got it the first time you said it.....Gage did not swallow/suck on the bottle and the only really good swallows on the test were with the spoon with liquid/semi-liquid nectar consistency material.   I was behind the screen within about 3-4 steps from Gage and Beth and Beth was feeding him. He was exhausted after a few attempts, but you see he has had nothing by mouth for 6 months that amounted to anything. This test actually really just helps us get Speech to come and help with assessment and strengthening of his throat muscles etc. So although it wasnt an A+ test it allows us a start. He is still aspirating and we will have to make sure that all that we feed him does not end up in his lungs and pneumonia which is my biggest fear. Also, he was tired and the more exhausted he gets the less he will concentrate on eating/swallowing and whatever we put in his mouth will slide into his lungs. But the amount Beth is starting out with will be very very small, plus Gage meets with the Feeding team monday and they may tell us something totally different or they may say give him steak and potatoes.  That sometimes is the frustrating thing when one MD says why isnt he eating too and the other MD says absolutely No Food by mouth.  The biggest catastrophe that happened was after the test gage had barium all over his mouth and clothes etc and he needed to be suctioned (we have our own machine).  Aunt Kim unstrapped him from whatever torture device they had him in and took out his pacificer and laid it on the table where the cups/spoons were and suctioned him. Well, the pacifier was thrown away.  He loves that pacifier. He uses only one type. We went to 2 stores in Greenville searching for this specific device.....I told Beth to buy at least 4-5 when she found them and Gage and I stayed in the truck as I promised Never never to do this again........We found one. Today Meme, pam, and Beth and Gage are at Duke at Dr Buckleys at the Eye MD and hopefully I will have more news.  But Praise Be for the No Retching or Seizures.We also added another MD appt onto next Wed at Duke.....We will have Gage's feeding tube taken out and replaced with a new type due to leaking and his growth. We will start early Wed and be there with our last appt at 4pm on Wed.  Also, His Urologist has returned form Haiti and if his testicles have not descended this will have to be surgically repaired b/c there is too much of a risk for complications. We now have this appt on Thurs 4/22/2010 in the afternoon. So Gage has alot going on in the next few weeks. But thank the Lord for today because we are not guaranteed a tomorrow. But isnt today a nice day, and I had a wonderful day with Gage and Beth yesterday. I am truly Blessed. Thank you for your Prayers. I hope that you have great day and thank the Lord for all that he has blessed you with today. I thank the Lord for all of you.  Aunt Kim

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