Hidey-Ho!

We're having beautiful weather,.. wish we could get out to enjoy it some more, but there's just so much work to do. Business is booming, and we're having to hire on more employees to compensate so it's exciting. I'm commuting to work now instead of working from home,.. our receptionsist quit,... which was a good thing. That was more problems than it was worth, unfortunately, and it's nice for me to actually get out of the house now. I've got the larger office, and the girls are set up to do their studies there with me,... looks like it's going to work out nicely!

We're planning to put the house up on the market soon,... can't say I'm ready to go through all that again, but I'm also more than ready to move. I didn't think I would be because I really like it here, and I love our house, but the distance just plain sucks. Never seeing Scott except on weekends,.. up until now where I'm commuting, but that isn't fun either,.. an hour+ each way really adds to your day, and I often stay way longer so we really are only home to sleep,.. making it even more difficult to get things done around here. I'm just not looking forward to the whole process of selling & buying again at the same time,... we've already done that once when we sold our first house and relocated here & bought this one, and it was no picnic trying to manage both, but it is possible,... just not something that ends up at the top of the list for 'enjoyable things to do', LOL. Not to mention how much I need to do just to prepare this place to put up on the market,... 'course I felt that way about the last place too, and it sold the same day it listed.

Scott's dad seems to be feeling some better,.. wierd seeing him in two casts (both feet/calves), and hobbling around with a walker or scootin' in the wheelchair. Going to be a looooong recovery for him, too. His mom sure shows how much she's hurting, too,.. wish there was something more the doctors could do for her. She uses a cane & a scooter these days to get around, too, and so to see them both in this state is hard.

I've been getting a lot of push to consider going into website design,... I don't know yet, but I've been thinking about looking into it. Enough people have mentioned it to me lately, especially after seeing all the new changes I've made to our company website, and then Friday I had a fortune cookie fortune read: "You would do well in the field of computer technology",...????? How'd da cookie know dat????? LOL,.. Anyway, it's crossed my mind more than once lately so who knows, maybe one of these days I'll look into some courses and learn how the "pros" do it vs. how I do it currently, hehe. It's mostly just going to be a matter of 'finding time'........ I still haven't even submitted my children's book to the publisher yet because either they won't want it, and I'll feel like crap, or else they'll love it, and I won't have time to finish the illustrations,....... I think I just have toooooo many interests & projects going on.

I was going to go up and paint my office this weekend, and work on getting things set up, but then the girls started looking like they could be getting Chickenpox,............ I'm still not 100% convinced, but it's certainly possible so I've kept them here at home until I can be sure. They're looking a lot better today though so I'm more inclined now to think it was something else, but it's still up in the air. If they're still looking good by this evening then I'm going to call it a 'false-alarm' and we'll head back to work tomorrow.

Well, I better call this break over, and get back to busy,......... Hope you all are having a good weekend! xoxo

Happy Independence Day!

Just a quick note on the way through town, back from camping for the last 5 days. Stopped off to touch base at the shop before heading on home. Too much to do once we get there so here goes,...

We're all doing well, and had a wonderful time. It was great for Scott to get up there and spread his wings in a manner of speaking. He was able to do soooooo many things and really enjoy himself without much pain, and without getting completely exhausted from it...... not bad for only 5 weeks since his surgery (Today as a matter of fact!).

Scott's dad actually did worse than originally thought. After the doctors were able to get a better look at his feet, it was determined that the other one is in really bad shape afterall,... one is mildly fractured while the other,.. well, the other is completely shatterd into a million pieces & fragments of pieces, and cannot be repaired. He's in a fiberglass cast that can bare no weight whatsoever so he's on a lot of bed rest and having to use a wheelchair as the crutches are too much for him. It's been said that perhaps after a few months maybe a surgeon can go in there and do some repair, but it doesn't sound like things look good for it. It sounds as though no matter what the improvement he's looking at having a bad time with that foot from here on out.

Well, I'm going to head out the door now. A lot to unload, a mass of laundry to do, showers to take, fireworks to watch, sparklers to 'spark', and little ones to get to bed. There are always prices to pay for relaxation aren't there? LOL..... Still, it's worth it!

We hope you all have a fun (but safe) 4th of July!!

*Rumor Control*

Things have been going well. We are keeping very busy between household, work, and summer activities... Scott went back to work pretty quickly (after only a couple of weeks,.. desk work mostly), and has been doing incredibly well. All of his physicians are amazed, and speak very highly of him in regards to just how wonderful he really is doing. He does still tire easily, but overall he's doing awesome.

Of course, we have had to handle some *rumor-control* that our competitors allegedly started... which was that Scott had a heart attack and that was why he needed open heart surgery. Obviously, we all know the real truth, and that he is doing great, but on the off chance that certain individuals are reading this blog, I thought I'd comment on it. Scott had a valve of malformed structure which has been repaired 100%, and is not at any further risk for heart complications. He is in excellent health. That is our official statement on the matter.

For the rest of us, I'd like to continue by adding that he may not even ever need another heart surgery. Except for the small chance of needing the ring replaced that repaired his valve, but the statistics for that are usually not for a good 10 years,... and he has been told he would likely be a good candidate for the new robotic style surgery, which does not require open-heart through the sternum,........... The surgeon actually controls the robotic machine through special gloves (and from an adjoining room no less!), and the procedure is actually performed by going in between the ribs under the arm,........... isn't technology cool? Anyway, Scott is doing fantastic and so is business. We feel very blessed.

PS- Happy Birthday, Sis! xoxo

Girls Night Out...

I had a much needed break this weekend, and just wanted to share,..... My sister, Jo's Bday is coming up on Tuesday, and so last night my sis, our mom, & I all went out to this incredible Hungarian restaurant, then on to a quaint little coffee shop for italian sodas, followed up by the civic theatre where we saw the play, "On Golden Pond". What an excellent evening! I want to say a special thank-you to the men in our family who made that night possible for us. The girls all stayed home with Scott, and my niece stayed with Papa so the three of us could have our special 'Girls Night Out'. I really cannot recall when the three of us have ever had opportunity to do such a thing so it really was extra special. We are actually talking about trying to go to the theatre regularly now,... we all love plays a great deal so it would be a real treat for us to look forward to every month or so.

I got to stay over at my sister's place last night, just the two of us, and then spent almost the entire day hanging out together, just sitting, relaxing, and talking. I needed that,... I have felt dehydrated not seeing her lately.

I had originally had plans to go away for the weekend down the coast with one of my dearest friends this weekend, but we had to cancel when Scott was having his surgery for lack of knowing whether I would be in a position to be away like that at this point. Another time, but it was disappointing because that would be another special excursion. I rarely get to see her due to our hectic schedules (& geographical distance), and I miss her! Speaking of my friend,.. today is the 25th, right? Happy 4th 'Hysterversary' today, AT! xoxo

A better way...

Scott's dad had an accident tonight, and ended up in the Emergency Room. He was picking cherries in the backyard this evening when the ladder slipped. He had to jump from the ladder or else he would've been thrown over the fence into the neighbor's yard, and a good chance he could've broken his neck or something much worse than he did.

He ended up falling about 10 feet, and speaking of 'feet',... he broke both of his. They're mild fractures, and so he is just having them splinted, but he's in quite a bit of pain, and very, very lucky that's the extent of his injuries.

He was unable to get up off of the ground, and Carol couldn't hear him so he laid out there yelling for help for about 10 minutes before a neighbor heard him, and alerted her. He's going to be okay though (thank goodness!), and it doesn't appear to have effected his hip (he has an artificial hip, and if you know anything about hip replacements, you know why there was extra concern).

Anyway,... he's going to be on crutches and/or using a walker for awhile. He was supposed to have jury duty on Monday,......... we told him there are better ways to get out of jury duty than breaking both your feet! Bad joke, I know, LOL.

Celebrate!

Today is our company's 1-year birthday/anniversary! We have 10 years experience in the industry, but it has officially been 1 full year today since we established our business, and we are doing by far better than we ever expected to by now so all the more reason to celebrate! We had a pizza party at the shop this afternoon with cake, but everyone got so full on pizza that we actually never quite got to the cake, LOL!

Today is also my 4-year 'hysterversary',... to most, that may seem a silly thing to celebrate, but if you knew just what a lifesaver it was for me, you'd understand. My friend, AT, & I met on a hysterectomy support site shortly before our surgeries which were only 5 days apart,... anyway, we connected at heart, and as it turned out we live only an hour apart (close enough to see eachother, but far enough not to see eachother as often as we'd like! *sniffle*). We've been very close friends ever since, and so I suppose that adds to my celebration every year because it's also what brought us together.

It's late so I guess I'll have a piece of that cake tomorrow! :P

Happy Father's Day...

Scott slept in, and then was greeted by all three girls who delivered cards and presents to him in bed followed by breakfast in bed. Waffles, scrambled eggs, sausage, a blueberry bagel, Starbuck's coffee, and a parfait of fresh sliced strawberries, vanilla yogurt, & almond cluster granola,.... Mmmmm! Shortly after, our youngest daughter, Ashley (6), came up with us all singing a song to him to the tune of 'Happy Birthday',... it went like this, "Happy Father's Day to You, Happy Father's Day to You, Happy Father's Day-God Bless You, Happy Father's Day to You!", LOL. And then he enjoyed the rest of the day playing with the girls. We hope you all had a wonderful day, too!

Happy Father's Day!

No rest for the weary,...

Well, I opened my mouth too soon, didn't I? I checked my voicemail, and it turns out that I got a call this very afternoon,.. a reminder that Ashley's follow-up is fast approaching with the oncologist, and it's once again time to schedule her next MRI. I always get nervous when this time rolls around,.. and unfortunately, it rolls around every 3 months. Every time, my mind races & wonders "Are the tumors still growing??"or "Are they really stable again??" The very mention of chemotherapy makes my stomach churn, and we discuss it's possibility with every visit,... and hopefully it will never come to that, but still,.. there it sits,.. waiting in the shadows. Lerking there, taunting us, and making me miserable at the very thought of my child having to go through it.

For those who don't know, Ashley is our youngest daughter, 6, and she has Neurofibromatosis Type 1, which is a peripheral nerve disorder where tumors grow on those nerves. They're usually benign, but can still cause life-altering and even life-threatening problems. Ashley has these tumors on both of her optic nerves, and although they are benign, they are considered semi-malignant because they threaten her eye-sight. They could cause blindness, among other serious complications. These brain tumors have been growing again now for a year, since last summer, whereas they had been stable for about 2 years before that. Her latest MRI looked as though they may have stabilized again, but we won't know for sure until this next MRI in the next couple of weeks. Thus, my constant fear whenever Ashley has appts coming up.

Anyway,...... there it is. My 'replacement worry',...... Darn it!! Should've waited to check voicemail until tomorrow! *sigh*,.........

*Whew!!!*

GREAT NEWS!!! Brittney's appt. up at Doernbecher's went fantastic today, and we found out that it really was a false alarm after all!! We were there for about 3 hours this afternoon. They started off with the echocardiogram, and did a thorough evaluation which included 115 images for the cardiologist to review. Her heart looked perfect,.. textbook perfect. They checked every aspect of her heart,.. the chambers, the valves, the arteries,.. everything looked great. Her EKG was perfect, too, and her clinical exam was also. In fact, the cardiologist didn't hear ANYthing,... not the clicking that the pediatrician said he could faintly hear,.. not even the slightest murmur. Nothing. What a huge relief,........ NO HEART CONDITION!!!

They said that something to look into might be exercise induced asthma or possibly some gastrointestinal acid reflux that gets stirred up during high activity,... neither of which they consider life-threatening or dangerous, but something to be looked into in case her symptoms could be remedied. And Brittney is thrilled to know she can go back to playing soccer this fall.

We went to the Old Spaghetti Factory for dinner to celebrate, and the girls were excited to sit at one of the tables inside the big trolley. Scott & I haven't been there in so long,.. it's been a good 10 years for me. It was a really nice evening. We're back home now, and heading off to bed. I'm exhausted.

I cannot tell you though how relieved I am,.... the kind of relief that moves you to tears, especially once the day finally draws to a close & everything is quiet. The kind of relief that you thank God over & over & over for. The kind of relief that means you're finally going to be able to sleep well tonight,.. sleep well & rest,.. rest without worry. Rest without fear... even if it's just for a short while before the next one takes it's place. And yes, that's coming up very quickly again with Ashley,...

But, for now,... we are breathing a huge sigh of relief for Brittney. *smiles*

Holding my breath...

Sorry for the delay, but no news has been good news. Not to worry, everything is alright. Just been very busy... Scott is doing extremely well, and tried work on for size last Wednesday and Friday, and then all week now this week. It certainly takes it's toll, but he is managing pretty well. The doctors have been thoroughly impressed with how well he's doing, too, and so I think that boost of confidence has done him well all the more. Geez, how many times can I use the word 'well' in this paragraph? Oh 'well',.. I'm not going to change it,.. I'm just too tired.

Tomorrow is Brittney's appt at Doernbecher's. She's scheduled for an echocardiogram and an EKG, and after that, a clinical with the pediatric cardiologist. I'll try to be sure to post asap on how that goes, although please keep in mind that it may take a few days to get all the results in. She's nervous,.. I'm nervous,.. but we've been trying not to borrow trouble. Staying positive until we know more, and hoping it will turn out to be a false alarm. At the same time, I'm not getting my hopes up too high either. No, right now I'm just trying to keep my eyes on the horizon,.. always the horizon,.. and remember to breathe,.. breathe, just breathe,.. because I'm a mother & I worry regardless, and so naturally,.. I keep holding my breath.

Leaps & Bounds...

Another good day,.. Scott is improving daily. I am amazed at how quickly he's bouncing back,.. the trick is to not overdo too much, too soon, but so far, so good. He's able to be up & about and stay awake for pretty much the entire day, with an occasional nap as needed. He's eating a lot more,.. gone from a little something up to three (moderate) meals a day plus even a couple of lite snacks here & there.

He started using the treadmill today, and did well so this will probably begin his daily cardiac rehab that we talked about with his surgeon... it's so hard to believe that today marks only one week since he came home from the hospital.

He's not pain-free, but we're keeping it manageable,... he's up & alert throughout most of the day, but he does still tire easily, of course,....... he's doing very, very well considering he just had open-heart surgery only 11 days ago! ;)

Tonight, he put the girls to bed himself,.. kisses, hugs, read stories, and sang songs. Was winded afterwards, but he did it, and he was proud. I know it meant a lot to him,...... it meant a lot to them, too. Each day has brought a new blessing.

We know that there is still a long road ahead, but we are hopeful he'll keep improving by leaps & bounds.......... for now, we're still taking things one day at a time.

Stronger everyday...

Things are going well. Scott is recovering nicely.

Our friends with the MCVFD came by Thursday night, and brought us dinner. They pulled up in the ladder truck, and then the guys brought us in a feast. It was such a cool thing for them to do! It was also the day we got the latest news on Scott's mom, and so an even more perfect day to not have to worry about fixing dinner. THANK YOU to Lt BW, SMcD, and I&DK!!!

A cousin of mine up near Seattle decided to generously help us out by hiring a housekeeping service to come in,... THANK YOU!! They're coming Monday, and I can't wait,.. I just haven't had time for all the nitty-gritty stuff,... I can't say enough how much I appreciate this help.

I'm contemplating hiring some landscapers to come in and do some 'catch-up' & then maintain for awhile because things are falling behind quickly outside,.. my neighbor to the north has a team that comes weekly so I plan to ask her for a referral. I'm learning quickly how important it can be to set pride aside and seek assistance where you need it... and that it is not always a bad thing to need help. You just can't do everything by yourself.

So, we're doing pretty well, and I'm really impressed with how well Scott is doing,.. He's able to be up & awake most of the day now, he's eating a little more, and his pain is manageable most of the time. He does tire easily, of course, and he does have rough moments,.. but he's getting stronger every day.

Thank you again to everyone for all of your support,.. it would be a lot harder to get through this without you! (((BIG HUGS)))

Calling all Prayer Warriors...

Just got a call from Scott's mom,... she's full of Vicodin and on her way back home from the hospital after a 2 day/2 night stay. She sounds much better, but she said that's the drugs. She also had bad news,.... they (the doctors) think that it is either the ovarian cancer invading her colon now, or else an all new separate cancer,.. colon cancer. They've biopsied, and so we should know which soon,.. either way, she has cancer in her colon now, too. I can tell you,.. right now I feel sick to my stomach, and am fighting tears.

An emotional day today,.. Scott has been good today & is resting now, but I have to tell him about his mom when he wakes. She asked me to tell him for her... she can't bare the thought,.. I've got a tremendous lump in my throat at the thought of having to tell him. This is never any easy thing to face.

Please keep her in your prayers,....... (((hugs)))

*TABOO*

I've been asked about foods Scott can have,... there's one or two so far that have offered to bring by a meal, and another that was asking about frozen casseroles from Costco or elsewhere so I thought I would just post a little note about what things are, as BW put it, "Taboo", LOL.

Scott can still have pretty much anything, except he needs to be easy on sodium, non-spicy for awhile, low-fat, and preferably not going to cause a lot of gas............... also he is restricted to decaf right now. Most important of all is watching foods that have a higher content of vitamin k in them. Liver is out of the question,.. however, foods such as spinach, broccoli, lettuce, cabbage, etc. are fine in normal quantities. Large quantities would interfere with his Coumadin. Although, those foods cause a LOT of gas so probably best to still avoid them for another week or two.

White meats would be better choices than red right now, too,.... chicken, turkey, ham & fish vs. beef, but some is okay.

Hopefully, this doesn't sound more complicated than it really is, or needs to be,.. it's not. Basically, healthy is just the main goal here w/o too many restrictions.

Most of these things are pretty common following radical surgeries, and are temporary.

I have felt like a walking zombie lately so I do appreciate very, very much those who have offered to help whether it's with a meal, or yardwork, or whatever,... THANK YOU!

And he's up again! ;)

This past week has been like a roller coaster,.. good day, bad day, good day, bad day, good day, bad day,.. you get the picture. Yesterday was a REALLY bad day,.. today, well today was not half bad. Except for needing a mild attitude re-adjustment this morning, he did very well all day long. No pain to complain of, just a slight tightness when he first woke, so other than that he was comfortable. He had labs done today for monitoring his anti-coagulation dosages, and then he wandered around the video store with us before we came back home. He has been groggy and a bit spacey (you can sure see the narcotics in his eyes,..), but he actually was awake for most of the day, minus a short afternoon nap. The longest he's been awake in a week. He ate a little better today, too. His appetite has been pretty minimal, but is gradually building from near nothing to a little something a couple times a day, and I consider every little bit 'progress'... just some of those 'small victories' I was talking about the other day.

Who knows what tomorrow will bring, but for now it's onward & upward!

One step forward; Two steps back,...

So yesterday was a pretty good day,.. today,... not so good.

Yesterday was wonderful up until mid-afternoon when things went downhill, but then he seemed to rest through the night. This morning started off with catastrophy written all over it. He's having pretty strong side effects from the pain medication,.. it's comparible to morphine so it's understandable (Oxycodone), but what a nightmare,... some times he's fine, and others it's just awful. Extreme sweats and then sudden & severe chills that cause his chest to ache with pain,.. a feeling he described as feeling as though his chest were packed with ice. These episodes follow his doses of Oxycodone, and are common side effects,... that doesn't make them any less scary when it happens. It mimics over-dose too much for my taste. I spent the first half of the one this morning in a near constant dash swapping out cold wet washcloths on his forehead, back of his neck, and around his face, and washing down his body,... then the chills hit, and it was all I could do to get him warm again,.. rubbing his arms & legs and covering him with several blankets,.. building friction in my hands so I could lay my warm palms on his chest on both sides of his incision to help take away some of the icy chill,... the poor guy was miserable, and once I finally got those side effects under control, the numbness set in again,.. three fingers on his left hand went completely numb like they did on his right hand Saturday evening at the hospital. After several minutes it comes back. He gets very weak and sleepy, and then crashes for about 3-4 hours. This doesn't happen every time, but he needed the higher dosage of the Oxycodone this morning because his pain level had shot up,... a terrible nightmare (again, thanks to the narcotic) yesterday late afternoon, and he had clawed his chest... right across his incision. The intense pain sent him into an instant sweat and still in the throws of the nightmare he dreamt he was covered in blood,.. at the same time waking, and in a panic and unable to get his sleep mask off fast enough to see,.. feeling the sweat on his hands and thinking he was covered in blood,.. it was not a pretty end to an otherwise good day. And so, he awoke this morning with his stomach in a tight knot from the gastrointestinal upset caused by the 'mare the night before which in turn caused immense pressure on his lower ribcage and radiated up through his severed sternum..... a chain effect,... then severe nauxia, dizziness, and on into the epsiode I described above. Picture if you will a display of dominoes as they fall one by one from the next to the next to the next, and the pattern continually changing and getting more complex as it goes,... that was how the majority of today went. Things finally eased up though, and he had a fairly uneventful evening,........... thank goodness.

Unfortunately, that wasn't the end to our "what else could go wrong" type of day,... Scott's dad called this evening with news that now his mom is in the very hospital we just left from! For those that know, and for those that don't, and who may have not read through the archives here yet,.. Scott's mom has been battling ovarian cancer for 4 1/2 years now. She is in near constant pain from the cancer, the tumors, the chemo, and multiple herniations across her stomach, among many other things... and although she tries to hide it, her constant pain is obvious. She cannot have surgery to repair her stomach because she really needs a complete grafting done across her stomach to fix it, and the risk of infection is too great which would also mean having to stop chemotherapy,.. which wouldn't be good either. She has been struggling with new pains here lately, and they became so unbearable that she ended up in the hospital. She's being kept overnight for observation,.. they've done a CAT scan and some blood tests, and she's scheduled for a procedure tomorrow afternoon to check on some other things... they're suspecting an inflamed bowel, and hoping she won't require surgery... that would be an immense risk. A colonoscopy should help determine what's going on, and what needs to be done... we'll know more tomorrow. Please be praying for her,.......

Any way you look at it, it has been a very trying day,... 'rough' is a good word,... 'miserable' is a better one. These are things to expect though,.. one step forward, two steps back,... or three,... or four,...

On our own...

Our first official day on our own since coming home yesterday, late afternoon,.. no nurses (to check on any immediate concern we had), no call buttons, no adjustable bed, no food trays, no hospital gowns to easily slip in & out of... those are some of the cons, but we already are relishing in some of the pros.... no nurses (coming in and waking him up at all hours of the night), walkie-talkies to replace the call button (especially since I'm now 'the nurse',.. and not to mention that our home consists of three levels, and he is currently incapable of yelling.), our own bed packed with comfy pillows, being able to eat when he's ready, and not on a specific time schedule whereas his food always showed up at the worst time and ended up either cold or going without by the time he was able to eat,... I have a bed tray for him, and he is able to eat whenever he is ready,.. and have it HOT. Button-up shirts (although right now they irritate his incision so we're sticking with the bathrobe for a few days), not over-extending his meds schedule because the nurses get busy (I keep careful watch of times & doses in a notebook on the kitchen counter),................ Anyway, it is both scary and a relief to be back home. It is by far more comfortable to be in your own element, in your own personal surroundings, yet at the same time knowing that you don't have the cardiac ward medical staff right down the hall to come to your aide should you have even the slightest concern..... pros & cons, pros & cons,.... All in all, we're doing okay,... he's doing okay, and we're happy to be home.

Better still,... our children will be home today!! Ooooooh, I cannot tell you enough how dehydrating it feels to go that long without them!! Yes,.. for me, my children are my water, they are the air I breathe, they are my nourishment, and my reason to wake every day,.... they are the very essence of my soul, and I am beside myself with eagerness & excitement knowing that I will once again be drowning in their hugs & kisses & smiling faces in only a matter of hours,....

Speaking of the girls,... while spending a near week surrounded by nothing but cardiology experts, the subject of Brittney came up many, many times,... between Scott, his grandfather, and now her, and I was told repeatedly that the symptoms she has been exhibiting in fact are most likely heart related and not muskuloskeletal, and I was told over & over how conscerned they were that the pediatrician would remove the prospect... it was strongly felt that she should not do anything overexerting until she sees the pediatric cardiologist,... including pulling her from soccer. She's not going to be happy about that, but at least there is only one game left of the season, this Saturday,..... I'm still planning to take her to the game to watch & support her team, but have decided it's not worth the risk to let her play in it, or the last two practices this week... I'll be talking to her coach tomorrow afternoon.

It has been a good day so far,.. amazing what being 'home' can do for you. Scott has been up and about, eaten a little, wandered around, and we've been able to hold conversations, and that has been nice. We've managed to keep his pain level at a minimum, and he is progressing on his incentive whatever,.... the breathy thingy, LOL.

He's back down for a nap so I'm getting back to busy,... so much to be doing. Many things I can only do when he's up, and many others I can only do when he's not... just a matter of balance, I suppose. That's my update for today,........ it's a GOOD day today!! There's going to be a lot of ups and downs,.. good days & bad days,.. the thing to remember is to keep our eyes on the horizon, and celebrate small victories.

We're home...

First I want to apologize for leaving everyone hanging on Scott's progress,... a bit of a change in plans, and I didn't end up really having another chance to use a terminal at the hospital in order to post updates.

He did well, and the surgeon was able to repair the valve. This should last many years before he'll possibly need to go back in and do this again.

He had a rough go of it when they took him off of his PSA (in his case, the morphine pump) because they didn't have new meds readily available for him upon being transferred to the cardiac recovery floor... a terrible oversight on their part. He actually ended up going well beyond his pain management schedule, and so many of you know, I'm sure, that when that happens you're pretty much screwed for an extended period of time trying to get your pain level back down. The pain becomes so intense that no amount of medication can really help for quite awhile, which is what happened to poor Scott. So, he had a pretty bumpy time the first day out of ICU. It was many hours before he was doing alright, but his well meaning nurse nearly overdosed him on Tylenol. She was giving him more frequent meds by switching back & forth between Vicodin & Percoset (sp?), both of which have Tylenol, plus muscle-relaxers, and I believe something else. So by the shift change early the next morning, the next nurse caught it, alerted the doctors, and at that point they had to take him off of everything and switch him to Oxycodone. Things went from bad, to worse, then good, to bad, to worse again... finally he was given a 3-dose schedule of Toridol through his IV port along with regular intervals of the Oxycodone, and he was finally in good shape. After the last dose of the Toridol, he has been strictly on Oxycodone,.. one he takes 3-4 times a day for pain breakthroughs, as it builds stronger in waves much of the time for him,.. and the other is also Oxycodone, but in a time release form. The two seem to be working well for him. Of course, he is not pain free by any means, but he is better able to tolerate it.

It takes a great deal of energy to do anything,.. a short trip to the restroom requires a 2-3 hour nap to follow,.. the same if he takes a 5-10 minute shower, and again the same even to simply sit up for 10 minutes to eat a meal. You don't realize just how much energy that really takes until you have been through something like this, or witness it first-hand... But, that is also exactly why we will need to be very careful about scheduling visitors now that he is home.

We welcome visitors!! We just ask that you call to arrange the best time as he has many ups and downs. Also, if you have young children, it would be best to arrange childcare for them during your visit. Although some may not understand this, it is not personal, and we do not think ill of anyone's children.... please understand though that we have three of our own that I need to keep somewhat calm, and children get excited & happy & playful, and although they are not being bad,.. the extra commotion really just adds to the exhaustion,...... it was wearing on Scott even to have the constant chitter-chatter of people out in the hallway at the hospital, and I had to go out and ask them to please quiet down. Even the next room over, if the TV was left on too long, it wore on him,... It may be difficult to understand, but the more people, the more noise, even quiet noise,.. it really does stress his system. I don't mean to offend anyone, for those who do not understand this request. For those that do understand, and I know that most of you do,... THANK YOU.

Please feel free to call and arrange a visit here at the house,... I will also ask that you plan to only visit for about a half an hour at a time in the beginning week or two... again, because he just does not have the energy to handle more than that. He had too many visitors at the hospital on Saturday, and it really hit him hard after, however that involved several people over a period of only a couple of hours.

Thank you sooooooo much to those individuals who sent cards, flowers, balloons, etc.!!! It really cheered his room, and made him feel loved. I have arranged them now that we're here at home, and we really do feel your love and compassion, thank you.

I will try to keep this updated as often as possible. For now, I must go,... I'm already exhausted myself, and this is just the beginning of a long recovery process! Please do not hesitate to call should you have any questions, or anything else. We thank you all so much for your prayers & your support.

He's Okay!!!

It's my first chance to post,.. I have use of a terminal at the Guest Housing here where I'm staying. I'll post in more detail probably tomorrow night when I make a stop over at home to make the switch with the kids before coming back Friday morning, but for now want to let everyone know that surgery went incredibly well, and he is doing awesome. He was only on bypass for 1 hour, and was only actually in the OR for an hour and a half in whole, and so his surgeron was VERY pleased. It was anticipated to be about a 3 hour deal on average, but Scott responded beautifully to everything.

He is of course extremely sore, but has good medication, and he is in good spirits. He even managed to eat dinner this evening so for those of you who might have some insight into this whole thing, you'll know what a great accomplishment that it for the first day!

I'm going to cut short,.. I've been up since 4:30 AM so I could be there when they started getting him ready for pre-op at 5:00. Not to worry, I have eaten regular meals, have been keeping up on plenty of water, and I did pop over here to my room this afternoon for a much needed nap.

He is expected to move out of the CRU (cardiac recovery unit) sometime tomorrow. I'll try to post again tomorrow night regarding visitation for those who are interested... we won't plan for visitors though until probably Saturday.

Thank you to everyone for all of your support & prayers leading up to the surgery,... and for all that we know will continue throughout the recovery ahead. It will be a long healing process, but he's already off to a great start.

God bless & (((BIG HUGS)))

There's a lump in my throat...

Well, tomorrow is the day Scott check's into the hospital,... it seems the closer we get to this thing, the more butterflies seem to take up residence in my stomach, and I feel like my own heart is in my throat.

I've worked things out for the week,.. I'll be staying in Guest Housing which is right across the street from the hospital for the first two nights (since I can't sleep in the ICU), and my mother is going to stay with our girls through Thursday evening. I'll come home to stay with them then, and then Friday morning will meet back up with Scott's parents who are going to take the girls (& the dog) camping for the weekend,.. a good distraction for the girls, and by then Scott should be moving from ICU to the main heart recovery floor, and once he's moved there, I am permitted to stay in his room with him for the remainder of his stay. For myself, I can't imagine going off camping when my child, adult or not, just had open-heart surgery and any number of complications could arise, and I could not be reached, but that's just me, I guess,.. I'm sensitive to those things, and I suppose in this case, it does have the advantage of providing a distraction for the girls. Still, it bothers me and makes my heart sink... I just could never do that. It's hard enough knowing our children will be clear off and away like that if something does happen, but there really isn't another alternative to the situation.

We are confident everything is going to go smoothly, and that God will work through the surgeon's hands,........... the natural human reaction to this whole mess though still lingers, and honestly, I don't care how much faith a person has (and mine has always been very strong), I believe that it is only natural to still hold some fear,..... it's that selfish part of us that never wants to let go of those we love, and when we are faced with the possibility of that, it scares us, it hurts us, and we beg for them to stay,....................... and that's why there's a lump in my throat.

Surgery *BUMPED*.....

Change of plans,.. due to a surgical emergency, Scott's open-heart surgery has been bumped a day. He will now check into the hospital on Tuesday, May 23rd, instead of Monday, the 22nd, and his surgery will be early Wednesday morning, May 24th, instead of of Tuesday, the 23rd.

While the one day delay actually works in our favor for finishing preparations,.. it also has it's turmoil. The 24th was my late brother-in-law's birthday. He passed a year ago on Feb. 25th, and this birthday would have been his 30th. He had 4 heart surgeries in his lifetime, making this whole heart topic all the more sensitive in our family,........... Scott's surgery being on his birthday is difficult for me. I can't explain the exactness of why, but it is........ probably because of Kris' heart history, and that day already being difficult now that he's no longer with us. I so had hoped for it to not fall on that day. Even though the surgery date was initially for only the day before,.. it was a relief to me that it was not on Kris' birthday. My heart feels sad & weary....................

B's Cardiology Appt........

Got the call to schedule Brittney's appt with the pediatric cardiologist up at Doernbecher's,... I just knew they were going to tell me they had an opening for next week,.. I knew it. "It figures", right Kris?? So, obviously that isn't going to work, and after explaining why, and mentioning the family history, etc. we got it all worked out.

Brittney will wait about 3 weeks and then go in on the 15th of June. She'll start off with an echo (echocardiogram), and EKG, and then a clinical meeting with the cardiologist. It's expected to take a couple of hours. For those who don't know,.. Brittney is our middle daughter, is 8 years old, and her pediatrician thinks she probably has the same heart condition as Scott (her dad). I'll post more on her as updates arise..............

Counting down the days.......

Only 7 more days until Scott's surgery,.. he checks into the hospital on Monday, and surgery is scheduled for early Tuesday morning. I can't believe how fast the time is flying by,.. I'm both relieved that it's getting here quickly so he can get better, and at the same time terrified and feeling completely unprepared. Both emotions keep swimming around my head, knocking into one another, fighting to be the dominant one and it is driving me insane,........ but somehow I remain stable and calm.

As for Scott, he puts on a good front, as most men do. There's that pride thing again, and it's so uncool to show any signs of weakness, but there it is. I know he's scared... and who wouldn't be? Routine or not, this is a huge deal, and I for one, would be shaking in my boots. The nightmares continue,... he's not sleeping well. Strength by day, on the surface,... but terror by night thanks to the subconscious.

Thanks to everyone for the support,... especially to those who have actually acknowledged what a big deal this really is. You don't know how much that means,... the ones that don't even hesitate for a split second before they react with an "OMG!" or a gasp before moving on into asking questions and expressing support & love. That's priceless. I know that for many, it's difficult to know what to say, and there are those who want to stay as positive as possible so they just tell you "things will be fine",.... unfortunately, sometimes it can end up veering off the other way, unintentionally I know, but comes off sounding as though it's felt it's not that big a deal,.. "it's routine these days" we keep hearing from certain individuals. Yes, while this is true,.. anything can happen,... and sometimes the best thing is to simply validate one's (our) feelings. Support the way they (we) feel because deep down you know if you were in his shoes,... you'd probably feel exactly the same way. Yes, staying positive is important,.. absolutely, of course it is,...... but it doesn't erase the fear. (((HUGS))) to you all.

Happy Mother's Day!

I had a wonderful day, and I hope you did, too! My three little angels made my morning so sweet with homemade cards & gifts, and breakfast in bed,....... Later, we all went out to my mom's where we spent the afternoon, along with my sister & my niece. Seven girls among three generations,...... and we do it every year!

Not to knock other moms who go on various 'retreats' for Mother's Day, and spend the day to themselves (I enjoy those days from time to time myself), but I just can't imagine spending Mother's Day without my children,....... they're the reason I get to celebrate it! I think I would feel so incredibly empty to spend a Mother's Day alone without my children. I am so blessed to have them...
... and today was awesome. I hope your day was, too! (((hugs)))

Happy Mother's Day!!

I put it in a bubble...

Today was better,... the tomorrow's usually are, aren't they? At least I seem to operate that way. Have a bad day, vent, cry, throw a big 'ol hissy fit, and the next day, it seems like a bad dream, and I feel capable of dealing with it all once again.

Life isn't fair and it isn't easy, but then, who ever said it would be? We have good days and we have bad days. Yesterday,.. not so good. Today, I've regained my perspective again, and today,.. today I choose to put it in a bubble, and blow it all away............

Some days you're the statue...

Well, I have to say, 'Sometimes I think I understand everything,.. then I regain consciousness'. Whoever said that life is fair was an idiopathic moron... life is most definitely NOT fair, and in case it's not clear,.. I'm not very happy about it.

We went to Brittney's appt. this afternoon, and well,.. we're now being referred to the pediatric cardiologist. Yes, he heard something, and he believes that it is most likely the same thing that Scott has. Since Scott's is congenital (they believe he's had it since birth, but it just took all this time to build up into a serious problem), and his grandfather had the same thing,.. odds are high that Brittney has the very same thing. She'll get an echocardiogram, and we'll go from there, but most likely she'll just be monitored from time to time until she's a lot older.

The reassuring part is supposed to be that she likely won't need surgery until adulthood,.. oh yes, thank you, that makes it all so much easier to swallow, doesn't it? I'm sorry, but did we or did we not just establish the likelyhood that my child, like her father, and his grandfather, also has a heart condition?? She may not end up needing open heart surgery until she's 35 give or take, but as a parent that knowledge does not stop you from worrying in the meantime.

There's no reason why she can't continue to play soccer,.. I just need to watch her over-exerting since her heart has to work harder... so, she'll maybe trade out a little more during games. And, the chest pains she's been feeling has most likely had to do more with muskuloskeletal reasonings than her heart, but until the cardiologist confirms it, I'm going to continue keeping an extra close eye on her.

So, while it's nothing to get too freaked out about right now,.. It still turned out to be lousy news, and I,.... well, damn it, I'm ticked and I'm sad. Life is not fair.... some days you're the pigeon, and some days you're the statue.

A pretty good day afterall!

We met with Scott's heart surgeon this afternoon, and he was wonderful. He is a tree of a man, tall & strong, and as it turns out he is the best heart surgeon in our state. This type of surgery is done about 1,000 times per year in our state, and of those he performs more than 300 of them himself. Further, there are only about a dozen other heart surgeons across the nation that perform as many of these a year as he does... Scott is in GOOD HANDS!!!

And,... he (the heart surgeon) says that he feels 96-98 percent sure he can do a repair instead of a replacement. Of course, this could change once he gets in there, but this man is a master. Scott has been given a choice now, too, on what type of valve he wants (if they end up still needing to resort to the replacement),.. the mechanical valve which would require Cumadin for the rest of his life, or a tissue valve which doesn't last as long. With the repair, he could go 10 years before needing another surgery. If the replacement is necessary, then the mechanical is pretty much a lifetime thing, and odds are good that he wouldn't need another surgery down the road, but again, the Cumadin delimna. And in case you don't know,.. Cumadin (blood thinner) is actually rat poison in a prescription bottle. Of the tissue valves, there are two choices,.. human or animal. The human valves are very difficult to replace in surgery,.. the animal valves are sturdier and easier to use. Of the animal valves, they used to use pig valves, but they generally only had a lifespan of about 7 years before needing surgery again. Now they prefer to use cow valves (this all sounds so gross), which tend to have a life span of anywhere from 10-15 years, 12 on the average. Scott has to decide his valve choice by the 22nd, just in case he still has to go through with the replacement once they get in there.

All in all, a very good meeting, and we both feel a lot more relieved!

More great news,......... S's mom got her results back, and her CA125 count is down!! She has been battling ovarian cancer now for 4 1/2 years, and just before Christmas gave us a big scare when her counts had jumped to 190 something (and I remember when we used to get so scared when she would go from 11 to 23!),.... Well, she's one tough lady, and in March her counts had come down to 115. She got her latest results today and she's down to 78!!!! I cried happy tears most of the way home tonight (good thing S was driving because it wasn't just a few trickling tears, I was actually bawling!). I love my MIL sooooo incredibly much! Her strength amazes me...

So Monday turned out to be a pretty good day afterall!

Yep, it's a "Monday"...

So, I called this morning to schedule Brittney's appt with the pediatrician, and kept getting a 'line busy' msg. every time I tried for about 45 minutes. Finally got a connection, and then was on hold for more than 20 minutes waiting to speak to someone,... then, and I could kick myself,.. I forgot that I also needed to get my ENT appt changed from this afternoon so I can attend Scott's appt with his heart surgeon (I didn't find out that our timeframes clashed until Friday evening). So, I had to call back in and wait on-hold for another near 20 minutes before getting someone, then she had to transfer me, and yes, I am STILL on hold,... it's been another 15 minutes and counting. Yep, it's definitely a "Monday"...

And back to Brittney,.. they did have an opening for this afternoon, but it was too close to Scott's so they are getting us in tomorrow afternoon at 3:00 PM, and we'll see what the Dr thinks. Hopefully, it's nothing, but I want to make sure.

Finally got off hold, and ENT is so booked up that my reschedule is not until June 12th. Oh well,.. mine can wait a little longer, Scott's can't, and I won't miss this meeting with his heart surgeon. I'll try to post again tonight............

Monday can't come soon enough...

Yesterday was my birthday,... #32. I woke up to my three favorite faces gushing with love all for their mommy, they sang 'Happy Birthday' to me over & over, gave me a million hugs & kisses, and they (Courtney, Brittney & Ashley) made me a pancake breakfast all by themselves complete with a tray so that I could be served breakfast in bed. (All together now,... "Aaaaaaaaaah..."). Waking up to angels,.. now that's a great way to start your morning.

Brittney had another soccer game, and she wanted her team to win sooooo much for my bday, and let me tell you, my little bumble-girl was IN the game. She challenegd for the ball, got some awesome kicks in, the girls all really came together as a team, and........... they won again!!!!! Final score, 3-2! The only thing though is that Brittney was pulled out about 3rd Qtr because of chest pains again. The Asst Coach is actually in med school, and is close to his doctorate so he was able to check her out really well, and then kept a close watch on her when he let her back out for a little more action in the 4th & for the win. It was a bit of a scare though. part of it, I'm sure, is that her sternum is still sore from getting hit in the chest with the ball Thursday night, but at the same time, she's been fine,.. until all of the sudden in that 3rd Qtr. She has complained of mildly feeling short of breathe during those episodes now, too, which she hadn't before,..... I talked to the Asst Coach for awhile after the game, and he agreed,.. she should be closely monitored, and probably time to get her checked out, just in case. Hopefully, everything is fine, but I'm getting concerned enough that Monday just can't come soon enough. I'm calling the Dr first thing in the morning, and get her scheduled.

Tomorrow afternoon is also the meeting with Scott's heart surgeon, and I'm antsy about that, too,... full of questions to ask. I can't believe he goes in for admission/surgery in only 2 weeks.

Thank you!

Thank you to everyone who remembered my birthday!! It was a wonderful day spent with family & friends......... am exhausted,.. will post more tomorrow. (((hugs)))

*SMACK!*

Took Brittney to soccer practice tonight,.. everyone has been so supportive about Scott, and I've become pretty chummy with a couple of the other soccer moms,.. we've got a little 'clique' going now, LOL.

Mid-sentence with Brittney's coach, going over dates that she would need to miss practice during Scott's surgery week, Brittney got hit hard with an airborn ball right smack in the middle of her chest. It knocked the wind right out of her and it took her several minutes to be able to really get more than little whispers of air into her lungs, which caused her to panic that she couldn't breathe... I managed to calm her down, and then she was able to get good breathes in shortly after, but it took a little longer than I would have rathered and started to make me a little nervous. She's fine though, thank goodness. Her sternum is bruised some, not outwardly, but she's sore.

She's complained about her heart hurting a couple of times in the last year or so, but I had always figured heartburn or something, and it was far & few between, but since starting soccer a month ago she has mentioned it a few more times, and considering it's only been a month, it's caught my attention,.. even more so now that we know Scott has a serious heart condition, and finding out that this condition is what his paternal grandfather actually died from before Scott was born. Brittney has tired more easily, and has become short of breath a few times,.. I assumed from not being used to the physical demands of playing soccer (a REAL sport! LOL), but now the heart thing is beginning to concern me. And it's not like she's doing this only after knowing about her dad,.. this started before so I don't believe she's copycatting anything... It just gives me more cause for concern that something might not be alright with her now that all of the sudden we know there is a family history. So, I think next week we'll be making a Dr appt. just to play it safe.

We have a date!

The hospital called,........ we have a surgery date. We meet with his heart surgeon next Monday, the 8th, and then he'll be admitted to the hospital 2 weeks later on Monday, the 22nd. His surgery will be Tuesday, the 23rd, and then he'll stay in the hospital for 4-5 days, they said. If all goes well, they'll move him from ICU to the main floor on Thursday, the 25th, and he'll probably be discharged either Sunday, the 28th, or Monday, the 29th (Memorial Day).

So, the countdown has begun,.... 19 days until the surgery (18 'til we admit to the hosp).... Can we say, "N-E-R-V-O-U-S"???

Angiogram...

Well, yesterday we spent 9 hours in the hospital ICVR, at the Coronary Care Unit (CCU) so Scott could have an Angiogram. This test is to check specifically for blockages in the arteries. The cardiologist said that even a few years ago they wouldn't have done this test on someone S's age (35), but Heart Disease is being found in younger & younger people all the time, and they don't want any surprises when they get in there. The cardiologist did tell us that this procedure, like many others, comes with risks,.. heart attack, stroke, even death (Gee, thank you for telling me this 5 minutes before you roll him into the O.R.!). The test is an actual surgical procedure,.. they make an incision in the upper leg, in the groin. There is a major artery there, and they run a catheter up through that, and inject the imaging ink so that they can see the coronary arteries on film. Good news,.. Doc says Scott has "Clean Corns",.. (coronary arteries). Scott was out of it for several hours, and reasonably uncomfortable. He did have one bad episode when they tried to get him up from bed,.. he made it 3-4 steps to the chair and sat, but then suddenly got very light-headed and they had to get him back in bed to avoid passing out. Turns out, his BP just dropped too suddenly, but they kept him in bed another hour and a half before trying again. He was fine after that, except for a nasty migraine that lasted about 45 minutes before easing up to being at least tolerable so he could walk around and get released. Because they go in through a major artery though, he's not allowed to drive for 24 hours or lift anything more than the weight a gallon of milk (10#) for the next week,.. any sudden pressure could cause him to bleed out (rapidly bleed to death) so as a precaution, he just needs to take it easy for the next week. I kept him home today, but he'll go back to work tomorrow... he's sore & tired, but otherwise doing great. Doc says he's restricted to desk work though... That's good because the more he takes it easy over the next couple of weeks the better. We've noticed that he seems to be getting worse symptoms-wise all the time,.. in fact, at times it seems he's worsening by the day so the sooner he gets the surgery the better. I'm really concerned with him waiting... Can't wait to have a date so at least I know 'when'. Not that I'm looking forward to him having open heart surgery, but without it we'd end up without him,... I'm just worried about him making to the surgery date. I'm sure everything will be fine, but this is still such a scary thing to face.

I'll never eat another calzone!

So we went out to dinner,.. and we both decided to get calzones. Mine vegetarian, of course. Well, they were huge, and steaming hot, and before I go on let me just add in here that the day before yesterday Scott & I made the poor decision to view an online video of some clips from an open-heart procedure,................. big mistake. Anyway, so as I cut into my calzone, the steam of course escaped, but instantly reminded me of the steam that rose as the heart (in the video) was seared and cauterized. Well, it just went downhill from there with all the marinera sauce..... all I could think about was Scott's heart (which is pretty much all I think about lately now), and the more I looked at my plate, the more & more it looked like a chopped up heart to me. This probably sounds rediculous, but I finally had to push it away and have the waitress remove it from the table because I was both tearing up and feeling sick to my stomach at the same time. Rediculous or not, however, I will never eat another calzone!

14 Years...

"The most joyous of occasions is the union of a man and woman in the celebration of life... "Two lives, two hearts, joined together in friendship, united forever in love... "As our love unites us, may my family become your family, my friends, your friends... "On this day I will marry my friend, the one who shares my life, my dreams, and my love..."

Those are excerpts taken from our wedding invitations 14 years ago,... Today is our 14th Wedding Anniversary. How the time has flown by. Where did it go? It seems like only yesterday, we were two young kids without a care in the world, except for hanging on to eachother. We've been through so many things,.. some things I don't know how we made it through without being torn apart, except that even still after all these years neither of us can fathom life without the other,.. good or bad, we're in it for the long haul. Through thick & thin, better or worse,... "I got you, babe." LOL

That's my heart, too...

So, Scott's new valve will be made of graphite, and his ticker will literally 'tick'. That's a good thing though, it tells us that his heart is working properly. In case I haven't mentioned it already, Scott has been diagnosed with Mytral Valve Heart Disease, and he needs Open-Heart Surgery. Originally, they thought it would only require a valve repair, but after doing the latest test on him (I forget the medical term, but he had a camera ran down his throat), the cardiologist found that it is much worse, and he needs a complete replacement.

I know this is a common procedure these days, and technology has come a long way, but it's still a scary surgery, and you know as well as I do how all surgeries come with risks,...... I just can't believe how there are certain people that have played it down to me like it's no biggie,... I can't imagine facing having your sternum cut open with a saw, and your heart not only stopped, but then cut open, and that during the whole process, the only thing keeping you alive is the heart/lung machine, and then thinking that this is not something to be freaked out about. Nobody close to us has acted that way, but a few outsiders have, and it just really made me mad. I can't imagine being in Scott's shoes right now, but I do know I'm going to be on the edge of my seat the whole time Scott is under, and I'm not going to feel okay again until after he's conscious again,... because what they're working on in there,.. well, that's my heart, too.

'In the know'

To update you, Ashley's appt. went well, and she has since had a few others,.. an ophthalmology that came back with excellent results, an MRI that showed that the tumors have again stabalized (YES!), and a follow-up with her Oncologist. This could be a temporary stabilization and so she'll be going back in 2 months for another MRI scan.

The genetics appt. turned out with Ashley being the ONLY one with NF,.. they even reversed the decision on me saying they felt the initial clinical diagnosis provided by Ashley's first ped-neurologist was in error. That gave me such a sense of relief in the knowledge that at least I didn't give this to her,.. it was spontanteous.

Courtney only has very mild scoliosis, and so mild she will likely outgrow it. Turns out it really, truly is a poor posture thing, and so she has been working on doing better. Thank goodness.

Brittney is still doing well on the dairy-free diet!! She has been doing so much better since the big switch,... also, she is in soccer this spring for the first time, and Sat. was their 4th game, of which they not only scored for the first time ever, but they won, too! Final score: 4-3,.. way to go, girls!

Brittney has also been taking guitar lessons (electric), and Courtney is finally starting piano next month. We've been waiting for an opening as they've been booked solid, and a spot has just opened starting next month. All three of the girls have been taking swimming lessons also, and so we've been keeping even busier than usual around here.

Carol is still giving her cancer a run for it's money, and I'm so proud of her. Her strength amazes me all the time. While her options are narrowing for treatments, there are always new studies and medicines coming out so we are continuing to remain very optimistic, and she's one tough lady. I love you, Mom!

Okay, the hardest thing going on right now is with Scott,... we just found out that he has Mitral Heart Valve Disease, and it's bad enough that a simple repair is not an option. He needs a full replacement, and he needs it soon. This means open-heart surgery in 3 weeks. Our world has been shaken up all over again........ good thing we're a strong bunch. I'll tell you though, Friday, finding out the news was a really hard blow. Scott is in a state of shock, and I was hysterical. But, now that my going off the deep is out of the way, it's time for me to put on my game face. Not an easy thing to do.

Anyway, that's where I'm going to leave off. I welcome anyone who wants to remain "in the know" to save this blog address and visit back periodically for updates......

It's surreal...

Yes, it's like a dream,.. It's evening now, and as the day draws to a close, I can hardly believe that only just this morning Scott & I had to sit down with our children and break the news...

It was difficult, but we all made it through,... nothing too graphic, but they know that daddy's heart isn't working like it's supposed to, that it has a disease, and that he needs an operation... and soon. They know that it's a big deal, and what could happen if he doesn't have it. They had questions, and we answered them as best as we could,.. my biggest thing is honesty here. I have no plans of going into any gory details with them, but I also refuse to lie.

At one point I was asked, "Could daddy die?",... Well, after swallowing the lump that immediately accumulated in my throat, and fighting back the tears as my eyes began to sting,... I tackled the question with the best answer I could muster by acknowledging the fear and the possibility followed by strong enthusiasm and encouragement.

We had a lot of hugs today,............... all in all, we're okay.

Victory!

We won our first soccer game of the season today!!!! It was awesome, and I'm surprised I didn't lose my voice from screaming, LOL,.. J/K. Anyway, it's Brittney's first time ever playing, and on a team that is ninety percent new as well, and so they've really come together pretty quickly. Not only did they score for the first time today, but they WON,... 4-3. It was a tight game, but it was sooooo awesome. Both teams really did great. I'm still beaming!! And boy, did we need a good cheer-up today after yesterday went down the toilet,....

Yesterday was a very difficult day, but bad news always hits me the hardest the first day,.. I get a good cry in (aka 'go off the deep end'), and then usually by the next day I'm ready to face things head on,... for the most part, at least until they hit me with something else. Anyway,... I've been educating myself better on what all is going to be involved, clarifying information, and have gotten a pretty good handle on things. Still,... it sucks, and I will literally be having an out of body experience the entire time Scott is under the knife. He has multiple appts between now and the surgery date,.. and surgery is going to be in about 3 weeks.

Can we say S-T-R-E-S-S??

'Stress is waking up screaming and realizing you haven't fallen asleep yet.'

So,.. We got the results back from Scott's cardiologist, and it's not good. Things have gone from bad to worse, and they want to do open-heart surgery ASAP. Yes, crack him open, spread his ribcage, put him on the heart/lung machine,.. the whole nine yards. The Dr said he doesn't know how he's made it this long, and if he doesn't have the surgery done soon, he might not be here in 6 months. Now tell me how the hell you're supposed to swallow that??!!!! I've been a freaking wreck bawling my eyes out,... my face is puffy, my eyes are swollen, and I feel like I'm gonna puke.......

Just Breathe...

Scott's procedure went well, he's out of recovery, ready to go home,... should know the results by next week, and how soon he may be looking at surgery, but they've indicated a simple procedure through a small incision. So, for me yet again it's,..... breath.. sigh,.., now quick!.. hold your breath all over again!!

Silver lining on dark clouds...

Well, she's in!! Ashley's got her first appt. at Doernbecher Children's Hospital Pediatric Hematology & Oncology Clinic next Wednesday, and will be meeting with three Drs. Everyone seems to be on alert about the sensitivity of Ashley's transition and the timing which is very good, but at the same time makes the hair stand up on the back of my neck,...

I'm excited she's FINALLY getting to go up on the hill, but at the same time, I'm nervous as all get out,..... I can feel the chemotherapy verdict breathing down my neck, and am dreading having to tell her. I keep praying there will be a miraculous change so she doesn't have to go down that road, but at the same time, if that's what will help, then I will just have to be greatful there is an option to try.

Just trying to find the strength to stare this thing down in the face and scream, "Bring it on!!!", but I can't,.. I'm shaking in my boots wondering how much more one can handle,.. apparently, a lot though because I know too many others who have been through so much more. I don't know whether that's supposed to be comforting, or not,.. selfish of me I suppose, but I'm feeling such a mixture of things. It just plain sucks not to be able to make things better for your child.

And now they think Courtney may have NF as well,... she will have to undergo testing, as will we all, including Brittney. They are concerned that other things could be being missed in the other children,... in our family. Hopefully not, but in the meantime it's floating around in my head. The next biggest concern is if Courtney has scoliosis,.. it appears so because she curves so harshly. The Dr is extremely concerned and wants her in to see him right away. So, she has an appt with him on Monday.

This is the first Dr who has given me the time of day about this,.. I've been asking for years. The last Dr told me she just has poor posture, and that she's rolling her hips forward. What a crock. The new Dr was appalled to hear it, and wants to see Courtney ASAP. I swear, if she has irreversable damage at this point, I'm looking into legal grounds. Not normally something I would do, but I am just so fed up at this point with how so many Drs have ignored my concerns when it comes to my kids that if I have an opportunity to make an example of somebody I just might take it... Oh, I guess I'm just in a really foul mood over all this right now, but who wouldn't be? I am both joyful and miserable at the same time,.. as much as one can be anyway. Forgive me for being rash.

Well,... I am worn out so I'm off to lie on the sofa and read a book. Celebrate small victories with me, and please,.. be there to hold my hand when I need it. I have been strong about many things, but I feel nervous about how I may handle things that are, and/or may be, approaching. Maybe say a little prayer for me (of course my children, too!!),.. and that I don't waste time borrowing more trouble before it's here. My mind has been spinning.

Keep you posted,..

PS- I just got a call,... Scott's Dr appt went as alright as it could, but he is now being referred to a cardiologist,.. his heart doesn't sound good, and there is concern. I feel like yet another rug has just been pulled out from under me. So much for that book for distraction,.. I think I'll grab a box of kleenex instead,................. please pray, my heart is sinking fast tonight.

The next step...

Well, things have been quite busy as usual, and now it's tax time to boot. I apologize for not getting an update posted after Ashley's appointment... it's just been one thing after another, but I owed you all that so I'm sorry to keep you wondering again.

Ashley's ophthalmology appt. went well,.. we were there for more than 2 hours doing tests,.. tests that they always end up saying how difficult it is to really know anything for certain at this young age, prior to anything bluntly obvious, at which point is often too late. That part is never encouraging, but at least they keep trying,.. that IS encouraging. It seems like her peripheral vision is still in tact for the most part, although still very much in question.

We also met with our broker, and got the insurance all set up through the company, and it's finished being approved, and will take effect next Wednesday, Feb. 1st. Yeah!!! Thank goodness. Now, there is even more work to set to,.. getting all the appointments set up ASAP, and all the medical records transferred over before them. Ashley needs to see the oncologist right away, as well as she needs to get her baselines done with the Neuro/Psych. and endocrinologist ASAP, too.

I'm still working on the foundation,.... it's slow going, but I have high hopes for it,.. I'm not publishing it's site until we are more solid. We have another new site up for Brittney's medical conditions,.. http://after-light.com.

I'm hoping to give Ashley's site at http://4ashley.com a face-lift one of these days,.. but things are just too crazy right now. The girls are all doing great though, despite the fast ride. They're doing wonderful with their school lessons,... I'm so thankful for homeschool!

I'm beat so I'm off,... Love to you all, and will post more after the big 'switch'.

And so a new year begins...

An update to share, but not the best of news. It seems that the tumor board met together last week, and have made their decision regarding Ashley's current state. Her oncologist called me the day before yesterday, and said that due to her symptoms and the growth of the right tumor,.. they feel we should proceed with therapy. Yes, chemotherapy. My heart has sunk into my ankles, and my head is currently in a dense fog. We knew this was coming sooner or later, but I just don't think any parent can be fully ready for those words, or any unpleasant news at any point in their child's life. While I am thankful that there is treatment,.. I am also saddened to know what lies ahead for my sweet shining star of a little girl. Please be praying for Ashley, and for our family. Please pray for my own strength as well because my heart has taken on so much these past two years, and although my faith is incredibly strong,.. I am, afterall, only human, and I, too, need to be held up from time to time. Things were going along fairly well, and now I feel as though I'm spinning again. Make it stop, my heart pleads.

The good thing,.. I have good friends. I also have friends who have already walked in my shoes and they've done it down the same path. I am thankful to know other NF families. We need eachother, that's for sure... even if we are all normally too busy in our own happenings of life to be in touch regularly. We know we're out there, and we know how eachother feels. We know we are not alone.

We've been sick the last few weeks,.. crummy stuff going around, but Ashley has managed not to get it a second time. I've had a splitting headache all week, and the latest news coming from the hospital hasn't helped, but I am starting to feel better now.

Ashley will be seeing the ophthalmologist on Wednesday morning. We'll find out then if her field of vision is narrowing as her oncologist fears. It is felt that her MRI should be moved up even sooner now, too.

Wednesday afternoon we also will be meeting with our insurance broker to finish up on the new group insurance through our company. We are going with the best through KP which will cover everything 100% after $5. copays for office visits. What a blessing! It should be in effect by the 1st of February, and if her oncologist had his way, he says he would prefer we had our first appts with the new doctors by the following day. We will do our best, of course. He says he plans to work closely with her new doctors on his findings and his personal feelings,.. hoping things won't get delayed with the transfer. It'll all be the best for Ashley, but a delicate transition at a critical time as well.

I will update on other things at a later time. I am doing this update right before bed, and am exhausted beyond all reason tonight.... Godspeed to all. I know we each have our own things in need of prayer, love & support.... you are all in mine and have mine, as we hope we continue to be in your's. Much love & goodnight.