Blubbering Tears....

Tonight on a forum that I frequent someone started a thread... say something nice about the person who posted above you.... here is what my dear friend Sarah had to say about me:

Oh Amber...what can I say about Amber??

AMBER is.......................MY GIRL! My sista from anotha mista!

Amber is.....
amazing
brave
strong
inspirational
funny...so freakin' funny
real
modest
beautiful
HUMAN
caring
intelligent
one of the kindest people on the planet
and one of my dear friends!

warm fuzzies girl!

wahhhhhhhhhh <-------------- this is me in tears! Its very weird to hear people speak of you.... but hey at least it was GOOD! Trust me... Sarah has DIRT on me! She could have come up with some GOOOOOOD stories! LOL

By Popular Demand... Schmidt Easter - with ALL my kids!

Yes... contrary to popular belief... I do have THREE kids. Ky's medical needs have been so time consuming over the past year and half that we have had very little time to spend with our boys. My only solace in this is that they are too young to remember all this. I am sure that I have damaged them but hey... who isn't damaged...

Ky was not feeling well on Easter day (since it was less than a week post op) so we waited until Thursday to celebrate Easter. My mother is one of the most creative people I know... she always has the BEST Easter baskets! Even growing up I can remember all the really cool things that we did for Easter! I am so glad that my parents are around and still young enough to enjoy the holidays with my kids. Because we only live 20 minutes across town its been a welcome help to us that both of our sets of parents are in the same city with us. Its a huge blessing.


The boys had lots of fun hunting eggs... Ky was not amused. She seemed perplexed by the whole concept! LOL She was more interested in carrying around her one little package of green peeps. She didn't want to EAT them... she spit them out when we put a bite in her mouth, she just wanted to carry them around. Owen was being a typical 5 year old... feeling the needs to dominate the egg hunt and having a subsequent meltdown when we told he HAD to leave some eggs for Ross. Ross was just thrilled by the concept of it all and was giddy giggling the entire time!

As for the question of the day.. "How's Ky today?" Well the sigh of relief was short lived. She is puking again. Volume puking. But the thing that is interesting about this time...she is NOT backed up... not constipated... so this puking is ALL the stupid intestines and colon blowing up. We should have known better than to try and get out of using Flagyl after the surgery antibiotics... but oh well. Hopefully we will give her a week run of antibiotics, some extra fluids today, slow down on the feeds and that will get us back in check. As of right now she is refusing food altogether but I am sure its because she doesn't feel good. So... another day... another issue. At least this one is just the SOS... so we know how to deal!! LOL

Siiiiiiiiiiiighhhhhhhhhhhhh

That is me... breathing a sigh of relief. After having a visit with Joe today I feel like I have finally stopped holding my breath. Truly I feel as if I have been holding my breath for two solid years... constantly waiting and holding on and hoping and praying and having your heart ripped out and stomped on over and over again. When we left the hospital after our neurosurgery there was a certain sense of relief but part of me said... don't get your hopes up...

Today we were able to tie up some loose ends about her g-tube, GI, kidneys, and long term plan.

Also we have stepped down off her pain meds at home and she is not showing signs of hurting. Which is good for her because narcotics are constipating. We will follow up with Bob on Tuesday and have her stitches removed and hopefully he will give us clearance!!

Joe said today that Ky looks the best that he has ever seen her look and I agree. She almost, dare I say it, looks healthy. I was sitting here this evening thinking... wow. If anyone had told me two years ago that one day I would have a baby princess who would spend months of her life in the hospital, have 7 surgeries, a permanent feeding tube, cathing daily and that I would be calling THAT healthy... I would have broken down in tears. You never realize what you take for granted. You truly don't know what you've got until its gone.

I was thinking tonight... what on earth will I blog about if there is no excitement in Ky's world? What will I do with all my "spare" time? I had wondered how I would be able to refocus my energy that I have trained so well for dealing with all this stress. I am so excited to be on the verge of something so new. I will look back on the past two years with a kind of fondness. I am a very different person than I was when this all began... and honestly I like this person better. I have truly learned so many things. I just hope that I can give back a small part of what I have been GIVEN.

I know that I will have more time to do some things that I love. I am so very excited about The Giving Love Foundation and all that it will offer to so many families in the future. I am also very excited to be finally able to have some time to fall in love with my photography again.

YAY for healthy Ky... YAY for some new amazing images.. YAY for The Giving Love Foundation

Remember Charleston...........

At the beginning of March Troy and I were invited to speak at the Pro Photo Learning Center 2008 Conference in Charleston, SC. We had an absolute blast and hope to do it again soon! Here's a pic of us in action during our hands on Photoshop Demos. Photos are by Jason Kaczorowski (if you can pronounce his last name... I will buy you STARBUCKS!!). And Jason obviously knows me well! He knew better than to take pics of me! If you look closely you can see me on the second computer to the left.... I am the redhead... obviously! LOL

You know they say that photographers themselves are the least photographed people on earth... I fully intend to uphold that tradition!

The Balanced Caregiver... from CarePages.com

I received this article in my email today and when reading it felt the need to share it with all my blog friends! I printed it out and its now hanging on my fridge. I need to remind myself sometimes that if "I" am not ok... then I cannot expect myself to be able to care for Ky...

Caregiver burnout: 10 ways to recharge and refocus

Take care of yourself and become a better caregiver in the process

Caring for others can take so much time, work and effort that stress and anxiety can often get the best of you. Studies show that female caregivers, in particular, have more emotional and physical health problems1.The key to avoiding burnout is using regular tools to keep yourself in check.

Ask for and accept help. If you have other family members, talk about a game plan for dividing up responsibilities. How much time can each person realistically give? How can long-distance loved ones contribute? Who will pay for what? If you have no immediate family, seek out and use community resources, both for yourself and the person you’re caring for.

Consider respite care. Respite care offers a temporary break to caregivers. It can range from a few hours of in-home care to a short stay in a nursing home or assisted living facility.

Know your limits. Guilt can play on your ability to say no. Be realistic with yourself about what you can and cannot handle, based on your other responsibilities to your spouse, children, work, school, etc.

Talk about your caregiving experience. Research has shown that counseling and support groups, in combination with respite care (see above) and other services, can help caregivers maintain their role longer, with less stress and greater satisfaction. Join a support group for caregivers in your area, see a therapist or even talk to a trusted friend.

Take it one day at a time. Recognize that you will have good days and bad days, and try to embrace it all. Even when you’re feeling resentful or angry, know that this is normal and doesn’t define you for eternity. It doesn’t make you a bad person or a bad caregiver.

Stay in touch with friends and family. Social activities can help you feel connected and can provide emotional outlets for stress.

Get enough sleep. It sounds so simple, but a good night’s sleep can make facing any challenge seem all the more manageable. Make getting at least seven hours a priority.

Eat well & exercise. Scarfing down a sugary snack because you have no time to eat will only make you crash later, making you more vulnerable to irritability, stress and fatigue. Opt for snacks like nuts or fruit to keep you on an even keel longer.

Make time for yourself. This is not a luxury, but essential for caregivers. If nothing else, set aside five minutes each day to meditate or simply be still. This is time just for you.

Educate yourself. The more you know about both your loved one’s condition and the resources available to you, the more effective you will be in taking care of the both of you. Look online or check out books at your local library.

http://cms.carepages.com/CarePages/en/ArticlesTips/HelpfulTips/better_you.html?ipc=nlmar_aby_1

A little bit of sanity...

I have to say... I am so incredibly glad to have found a great group of friends on one of the parent boards that I frequent. It is so liberating to chat with them and just really let my hair down and be able to say ANYTHING and they totally understand! We have the same docs, the same issues with our kids, the same experiences! I laugh so hard I cry every single time we get together. It truly is funny how we can make the dumbest things into the best time!!

Thank you ladies!! For all the laughs and inside jokes and "mcnamed" people who shall remain nameless!!! You all are truly my sanity!!!

I am going to bed now... a good cry yesterday... a good laugh today... now THAT is the life!

Thought of the Day

I don't know why but today has been a REALLY bad day. Can you tell from the fact that I have posted like 10 times today? I have always promised that no matter what I would be 100% honest on this blog... and here I am. I completely lost it today. I should have known it was coming ... I haven't had a breakdown in forever. Its like all the weight of everything in life was coming down on me all once and it was the dumbest thing that made me breakdown! I guess that is the beauty of being a woman... we can cry just to be crying. Its allowed! And good thing too... because today I think was one of those days when I just needed to cry. So I did. I had me a good cry and now I feel a bit better.

I was reading a really sweet message that someone sent me today and in their signature was this:

~ The one who leaves a legacy of love to generations to follow has lived a life worth remembering ~

Wow... what a powerful and true statement. It literally brought tears to my eyes. I hope that if nothing else, when I leave this world that my children will know that more than anything else they were loved. Not the kind of love that says "I love you" as you run out the door but the kind that loves you without reservations and without prejudice, that loves you in spite of all your flaws. The kind of love that makes the person who loves you feel like its THEIR privilege to be ABLE to love you. The love that loves you more than life itself. The kind of love that seeks to grow and continue giving itself again and again no matter what kind of hurt or pain it has experienced.

There are some things in life that no matter how much you SAY them, their meaning can never truly be conveyed... "Thank You" and "I Love You" are two of those. I feel so fortunate that I am provided the opportunity each day to tell someone "Thank You" and "I Love You".

My challenge to you today... find one person that you can truly Thank with all your heart and email them... call them... write them... text them.... and just simply say... Thank you.

Then this evening grab your husband, wife, kids, mother, father, sister, brother, whoever it is that you love... and simply say "I Love You".

Say nothing else but these words and take a moment to enjoy the beauty in their simplicity.

Ky update of the morning...

I swear... if it were Joe's surgery I would have already called him and given him my... "There's something WRONG with my kid" speech that he has heard so many times before.... I cannot tell you WHAT... I am NOT and MD.. but I know... there is something wrong. Whether that is a big wrong or a small wrong... something is wrong. Sigh... I hate having to go to a doc and tell them that. Usually I get the... "you have to be kidding me... you are CRAZY" look from them. Joe is the only one who has never given me that look. (at least not in front of me! LOL)

I just know that there are too many small things that are adding up..... there is the egg on her back.. so I have heard a lot of people say that their child had this too. OK cool. Then there is the decreased cath amounts... we are back to cathing nearly nothing even with extra fluids... don't know WHAT the heck is up with that. This morning she woke up feverish... like 99.9 which for Ky that IS a fever. This is my kid who stays like upper 95 or low 96... When I was feeding her this morning she was heaving like she was going to through up and I had a hard time getting the formula to flow in the tube. There is some MAJOR leakage around her g-tube site this morning... YUCK... We are not even going to talk about her personality change. The day we left the hospital she was HAPPY... I thought... OMG my baby is back, she was playing with toys and having her normal almost two year old reaction to being told NO, but otherwise she was in good spirits. She had been pretty anxious and upset the week or two before the surgery.... but its like overnight she went from being happy smiley Kyleigh to crying 24-7, upset, unhappy... ugh. And yeah.. so she's almost two... I understand that... but I look at her in the eyes...and those eyes that normally sparkle are dull and vague. Oh... and then there is the standing on the head... and trying to do forward rolls... I am SURE we are not supposed to be doing that one week post op...

I don't know how or what to even say to Dr. Owen if I were to call him... which is even more frustrating... because as is so cliche for Kyleigh... there is nothing glaringly wrong.

I guess I will just keep her doped up and comfortable and keep an eye on her. I just don't know why there was such a drastic change overnight on day three. The only thing I can guess is that we dropped off the Toradol and that maybe she is still in pain. I don't know and its so upsetting to see her obviously not feeling good and having NO WAY to do anything about it. SUCKS.

Coming home....

As is customary after the recoup time from the hospital stays I always try to post a few things about our experience. Sometimes they are good... sometimes bad. I honestly don't know WHO I write these things to... I think I write them mostly to get them off my chest and out of my head.

I know this blog is mostly family and friends, be they close or scattered throughout the world, but someday I hope that if even one of our amazing medical team is having a bad day, that they will google their own name and come across our blog. I hope that maybe some of the things written here about them will bring a small smile to their faces. I hope that they know that we owe them everything..... and that there are not enough words to tell them how we truly feel.

I just wanted to take a moment and acknowledge our TEAM of medical professionals. I am truly humbled and blown away by the care that my princess Kyleigh has received in the past few days, weeks, months and years. I have had my doubts about Kentucky Children's Hospital and UK and I have always felt that Dr. Joe Iocono would be the only reason why we would come back to UK vs Cincy. I have to be 100% truthful in saying many months ago... Joe was the only reason why we stayed here in Kentucky for ANY of Ky's care... We were very confused and just trying to do the best for Ky by finding "the best" all over the country no matter where they were. He told us that we needed to make a decision and that we should try and manage the majority of her care in one place. It really struck me... he was right (as he so often is). Yet, I truly believed that seeing HIM would be the only time we would ever step foot back inside UK. I have now found enough reasons ...

I never thought that I would find myself saying this but coming back to Kentucky Children's Hospital was like going home. Walking those halls there were so many familiar faces.. so many familiar things and sounds and sights. We have our favorite child life girls, nurses, doctors, even our favorite food service guy who asks how our day was at dinner and leaves us breakfast if we are not awake yet in the mornings!! These things, familiar faces, are comforting in ways that the mind cannot explain.

When we went to Chicago we thought that we would find all the answers. We thought that it would solve everything that we would have some miracle cure for Ky. We went straight to the best... and Dr. Frim, I still believe, is one of the most well respected neurosurgeons specializing in early childhood Chiari, in the world. After our visit we were able to find out that our insurance WOULD have paid for Dr. Frim... we could have gone back there for her surgery, but the day that we walked out of that office we knew... he was not IT.

Dr. Robert "Bob" Owen

And then we met Dr. Bob Owen. We were instantly comfortable with him. He was quiet and sure. He is a man of few but poignant words. He is one of those people that when he speaks the whole room listens. He was not what we were used to. Troy and I are anything but "of few words" and quiet will never be found in the same sentence with us! Little did we know that Bob would be just what we needed. Even through the three months that we had to think it over, I was still unsure. I just felt that if we had passed on "the best" how could anyone else measure up. Now I know. I cannot tell you what it means to me to KNOW beyond a shadow of a doubt that we could not have found a better doctor or hospital anywhere else for Kyleigh and for this surgery. Not only did Dr. Owen perform a beautiful surgery for Kyleigh the time and care that he showed both myself and Troy as well as Kyleigh is a true testament to him.

So... in case you ever stumble upon this small piece of our world ... here's to you Bob:

Dr. Owen - "Bob" You have been truly great. We cannot tell you how much we appreciate you. You have been cool, calm and collected throughout this entire process. That is something we truly needed. We were very privileged to have you with us. We have never once doubted your abilities as a surgeon and knew that you would do an amazing job for our daughter and we were right. Thank you for everything.

Dr. Arundathi Reddy

Dr. Reddy - Wow... I don't know exactly what to say to you. I feel that our thank you to you should be something more significant than just a blog posting. You have been with us since the start. I remember meeting you in the NICU the morning of Ky's first surgery. I was so hopped up on pain meds that I remember very few things about that week... but you were the FIRST person to ever tell me that Ky would be fine... that YOU would take care of her.

I was so ecstatic to hear that you would be with us for this surgery. To be honest... when Pre-op called the day before the surgery I told them... if there is no Dr. Reddy... there is no surgery! I would have called if off too... !!! Trust is not something to be taken lightly and you have more than earned ours. I know that there is never any doubt when we hand Ky over to you. You have gone above and beyond for us always. But what you did in the PACU on March 18, 2008, will never, ever be forgotten. Those minutes and hours are things that we can never thank you enough for. You see its those hours and moments of extreme turmoil that we go through that truly defines a good doctor. Its those moments that when your experience can because a bonding moment or a day in hell. Watching you care for my baby girl for those long hours I could not help but thank god that it was YOU there with us. There are very few people that we would ever entrust those moments to and you are definitely one of them. You have been so incredibly caring and attentive. You have calmed our fears and anxious hearts. We truly appreciate and have the utmost respect for you. Thank you is not enough but it is a start.

Dr. Phil Bernard

Dr. Bernard - We were so privileged to finally meet you. I wish that it had been under better circumstances. We were glad to have you and your team to add to Kyleigh Amazing caregivers. You have been fabulous one more than one occasion and I truly appreciate that care and concern that you have shown for our princess and the amount of respect that you have given to us as her parents. THAT is something I cannot ever thank you enough for.

Dr. Joe Iocono

And of course there is Joe. Our dear Dr. Joe. Dr. Joe Iocono- What is there ever to say about him? How do you continue to add to a description of the one doctor that you measure everyone else against? How do you find words to tell someone about how his name has become synonymous in our special kid world with "the ultimate in patient care". Just yesterday I had a friend email me who is upset and changing doctors yet again for her daughter. She said to me, " fear that we will never find our Dr. Joe... I truly hope that our Dr. Joe is out there and waiting for us and that we can find him very soon." WOW... I think that says it all. Dr. Joe, the name, the description, the feeling, has become somewhat of an ICON.

I feel like a broken record when trying to tell you how we feel and how appreciative, thankful, and indebted we are to him. I truly wish that I had photos or video or something else of our experiences with him because one cannot understand what it is that he has done for us until you have been here with us to experience it. There are so many moments that will remain only in our minds that I so wish I had on film. The way he cares for his patients is something truly special and I hope that UK understands what they have found in him. There have to be hoards of families out there who feel the same way that we do about Joe. I know that truly great people are seldom acknowledged and rarely appreciated. I only hope that anyone who reads this can come to understand that our dear Dr. Joe is simply the best.

Joe... from the bottoms of hearts... a million times over... Thank you.

(great...... now I am crying........)

So here I am. A Kentucky girl who never imagined that her hometown of Lexington and our little hospital, Kentucky Children's Hospital, could ever be good enough for our daughter. We never thought that they would be able to offer her what she needed. We never imagined that it would measure up to a place like Cincinnati or Chicago. We were wrong. I am here to tell you... I have been to top Children's Hospitals and I have come home knowing that our hospital, nurses, and doctors are not "as good" as these other places... They are better, the best even. Today of all days I am so proud to say that my daughter was treated by the amazing medical team at Kentucky Children's Hospital. I am proud and humbled and thankful. Thankful that we were able to come home......

Happy Easter

About my friend Julie...

I have to tell you a story. I know a lot of my blog friends are newer to reading our blog. You may or may not have been reading a year ago when Kyleigh had her open heart surgeries. Just to recap I need to tell you a story. A story about one of the most beautiful people I know. Her name is Julie Williams. She, her husband David, and their 5 children live just outside of Salt Lake City, UT. Julie is a TWO time cancer survivor. She has helped me make it through some of the toughest times of my life. Talking to me into the wee hours of the night when I could not sleep, comforting me when I could find no other comfort, praying for me when I could not pray for myself, dropping her entire life and packing up to come to Kentucky when Kyleigh had her open heart surgery. She found childcare for her 5 kids and made her way to me when I needed her most. Julie is also the photographer that I recently showed you a clip of about NILMDTS. She has been shooting up to 6 session PER WEEK for months now.

And now she finds herself falling upon hard times. Because of her past health issues, fighting and winning her battles with Cancer, she is no longer insurable. No healthy insurance company will give her insurance. Julie and her family are going through serious financial hardship at this time.
Julie has been sick for a while and is having a radical hysterectomy on April 1st, for which she has no insurance to cover. Needless to say this is taking a very hard financial toll on her family, and they do have 5 children, which makes things even harder. Things have been slow for both her business and her husbands business since the end of last year. They were already behind on bills and things are slowly being turned off.

It breaks my heart that I literally have NOTHING to give to my dear friend who has been there for me every single time I have asked of her. It kills me inside to know that I have to sit here in Kentucky and due to our own financial hard times I cannot even go to her. Two years of battling for Kyleigh has done a number on our finances and we are finally feeling the ripple effect turn into a wave.

I am not a person who will ever ask for money for myself... us... we will find a way... my friend Julie... she cannot find a way for herself right now. But please say a prayer tonight for Julie and if you find it in your heart to send even $5 or $10 to Jewels please know that from the bottom of my heart I could never thank you enough for giving to this dearest friend of mine.

The other friend who came to my rescue over a year ago is Cristy Nielsen. She has taken on the task of organizing this fundraiser. I truly hope that we can come up with the money Julie needs to have this surgery. It is estimated that she needs $15,000 to cover it... I know that seems like a huge amount but if we all gave just a little then that would add up to a LOT!

If you have questions ... please email Cristy at cristy@cristynielsen.com or contact me at 407-619-1359 to find out where to donate funds for Julie and her family or send your funds via paypal directly to Julie at jeweleeboo@msn.com.

The small favor that I ask is that you let Julie know that your donation is in honor of Ky's blog. She NEEDS to know that the GOOD she has put out into the world CAN and WILL come back to her.

PS... stay tuned ... within the next week I will announce the complete plans for Lilie's trip to the Ocean!!! YES it will happen. YES we raised the money! YES it is 100% funded!!!!!!!!!!!!!!!!!! Thank you to all who donated... they will be heading to Daytona Beach the last week of April!!!

Back to the hospital we go....

Bob, our neuro, called this morning and said that he would feel more comfortable if he could see with his own eyes what we were describing about Ky's back. I feel more comfortable with that too... so off we go to the hospital again. Sigh.

At least this one was short and sweet. He looked at it and said that it most definitely could be spinal fluid leaking but he was not going to worry about it unless it broke through the skin and starting leaking from the stitches. He said to keep a close eye on it and if it changes to call him back. I can breathe a sigh of relief now that I know we are not going to be re-admitted. Thank God.... so I will sit here and try to simmer down... and not stress about it. If its going to leak... its going to... and if its not... its not. I can only be diligent and make sure that if it does that we catch it so we can treat it.

I do feel a LOT better having had Bob look at it though. So now we are off to the studio to get some business done and then to pick up the boys to go home and clean up and get ready for EASTER Sunday at HOME!!

Tonight

I am a mess again. I swear. I truly thought that this time would be different. It WAS different. We were there.. we were in and out even with all the excitement of the OR day (which I will post about later but I am too tired tonight) it was different. Ky looked great. And then came tonight.

Why is it that we cannot catch a break? Why can it never just be normal or easy? Why do I continue to ask WHY when I know that I will never know the answer to that question . I am sitting here with my head pounding and my heart is heavy. I am so confused and once again I find myself KNOWING that something is not right yet ignoring it. Thinking that if I ignore it it will go away and I will not have to deal with it. I will not have to have yet another fight with my husband who downplays EVERYTHING and still after two years of doing this thinks that I am overreacting.

Why? Why am I always overreacting? Can I not just be cautious? Is that not acceptable to err on the side of caution? Why does everything have to be such a damn big deal?

When you LOOK at Ky you would think she is fine. But, I , who know her better than anyone else, know that this is never true. She is never just fine. There is always something that lies below the surface waiting to rear its ugly head and cause a big ordeal. I know that her body lies. I know that THIS is the kid who comes out of the OR standing and kneeling on all fours when they SAY that there is no logical reason why if she is in that much pain that she should not be knocked flat on her back. This is my child to extubates herself.

When I left the hospital on Wednesday I felt free. I felt like we were finally free. Free from all this heaviness that has constantly weighed us down for the past two years. I felt like I could move on with life and finally start living again. You see, I have been living a life "on hold" for nearly three years now. Holding my breath until I was blue in the face. Hoping beyond hope that one day things would change. How many times must one's hope be crushed before you loose hope altogether?

Tonight I am back to that scared and confused mom that I promised myself I would never be again. I am back to not KNOWING what to do. So I will do what I always do. I am going to do some research, talk to a few people, co check on Ky, and then I am going to go get in my quiet place and figure out what the hell to do.........

Our journey...

It is very sobering to see your journey from the outside. As parents we are so caught up in making sure that our children's needs are provided for and worrying and stressing that it is impossible to slow down and step back to take it all in. My dear friend Lisa Zanchi was with us on the day that Ky was born and was able to chronicle the heart breaking hours that followed. We felt it only appropriate that she finish this journey with us. We know (or HOPE) that most of our surgical journey with Ky is done... and what an amazing and appropriate finish it was.

This our journey beginning at 4 am on Tuesday March 18 , 2008 and concluding at 4 pm on the same day. It is a journey filled with much anticipation, fear, hope and tears. I hope that as you watch this you can FEEL what it is like to experience a day in our shoes. This is a day that I pray no one else ever has to go through but know all to well that I was not the first, nor will I be the last parent to walk in these shoes. I will leave this post with this show up forever. As soon as I get a bit of sleep and come down off my emotional high I will post and tell you all about our stay and our amazing medical team and hospital!!



When listening to this song it never had really touched me until this week... and when I realized WHAT the words were saying I understand that there cannot be a more appropriate song...

OneRepublic Stop And Stare
This town is colder now, I think it's sick of us
It's time to make our move, I'm shakin off the rust
I've got my heart set on anywhere but here
I'm staring down myself, counting up the years
Steady hands, just take the wheel...
And every glance is killing me
Time to make one last appeal... for the life I lead

Stop and stare
I think I'm moving but I go nowhere
Yeah I know that everyone gets scared
But I've become what I can't be, oh
Stop and stare
You start to wonder why you're 'here' not there
And you'd give anything to get what's fair
But fair ain't what you really need
Oh, can u see what I see

They're tryin to come back, all my senses push
Un-tie the weight bags, I never thought I could...
Steady feet, don't fail me now
Gonna run till you can't walk
But something pulls my focus out
And I'm standing down...

Stop and stare
I think I'm moving but I go nowhere
Yeah I know that everyone gets scared
But I've become what I can't be, oh
Stop and stare
You start to wonder why you're here not there
And you'd give anything to get what's fair
But fair ain't what you really need
Oh, you don't need

What u need, what u need...

Stop and stare
I think I'm moving but I go nowhere
Yeah I know that everyone gets scared
But I've become what I can't be
Oh, do u see what I see...

Neurosurgery Our short and bittersweet story.

OMG what a day... it was complete craziness. I woke up late and we were about 10 mins late getting to the hospital because I totally forgot to pack the passies. We had to stop at Walgreens at 4:45 am and get some because I knew better than to send her into surgery without it.

The surgery went well. Our anesthesiologist ended up being the one we requested... Dr. Reddy... she has been with Ky in ALL of her Kentucky surgeries here except one... and literally has been with us since Ky was born. With the day I experienced yesterday I am so incredibly glad that Reddy was with us yesterday. Had it been someone else I might have had a nervous breakdown.
Bob, the neurosurgeon, talked to us after surgery and said all is good there. Her movement is great and when he clipped her cord it snapped just like anticipated. That was a huge sigh of relief! However the next 11 hours that ensued post op were nothing short of hell. He said that the PACU people (recovery room) would be out to get us in the next hour. Before my butt could sit back down in the waiting room they were calling for us to come NOW.

They only allow one person in the PACU so I went alone only to find my baby writing in pain. She was screaming and flailing. She was supposed to be lying flat but it was all I could do to keep her on the bed. She was arching her back, banging her head... standing, sitting, flopping. You could tell that she was in major pain and that she was completely out of her mind. I tried to pick her up several times but each time she bucked and nearly lept out of my arms. After nearly an hour and a half of trying to get her pain under control she managed to kink her IV line and loose her IV... which meant we had to put in another one. I knew better than to attempt this without Troy. He is sometimes the only one who can talk any sense into Ky and he is CERTAINLY the only one who can hold her down long enough to get an IV in.

I think we ALL cursed the moment that Ky lost her IV.

I cannot even begin to tell you what all we had given Ky to get her comfortable but nearly 3 hours later we were able to get her to calm down enough to allow Troy to hold her. We burrito wrapped her and he held for over an hour. Dr. Reddy was very careful to numb both of Ky's feet before we attempted a new IV. I am truly appreciative of the compassion that she has and continues to show my baby girl... she is truly phenomenal.

Because of the sheer volume of pain meds that they had to give Ky we decided it would be best to take her to PICU where she could receive all the meds she needed. It was not the optimal thing for us... but we do what we have to do. We had FINALLY gotten Ky to settle down a bit and Troy was holding her so we were afraid to put her down so Troy literally climbed into the infant crib and held her while the nurse and transport guy wheeled both of them into the PICU. It was quite a site I assure you. If you watch the video below you will see pics... one thing I can say about us is that we we are nothing if not exciting.

We finally found a combination of drugs that helped Ky to rest overnight and troy stayed up with her while I got some sleep. The next day they moved us over to 4 West. With that move we have OFFICIALLY resided in EVERY single area of the Kentucky Children's Hospital. NICU, PICU, 4 East, and 4 West....

We had an amazing nurse on Wed and I am truly proud of her!! We are a lot to handle with all of Ky's medical needs and changing orders every hour for something or another must have been completely exhausting for her but she did everything with grace and with a smile and I cannot thank her enough for that. I am going to try and find out her name and send her a little something as a thank you... just because she was so great. Ky did really well the second day.. so well that we were headed for home.

The only snafoo that we had was ONE nurse overnight on Wed decided that she was going to take Ky's temperature RECTALLY. It was about 3 am and I had just nodded off to sleep and I hear Ky SCREAMING ... jump up out of bed ot realize... she is trying to shove that up her BUTT!!!!!! I nearly choked... Troy was laying there half asleep laughing. The only thing I can remember saying is... "STOP!!!!!!!! I PAID $30,000 for that A$$... FOR THE LOVE OF GOD DON'T SHOVE ANYTHING UP IT!!!!!!" I think I nearly scared the nurse to death. Poor woman was shaking... I was half asleep so you can imagine me nearly tackling you me in my mama bear state! LOL It was funny... I was actually laughing. I cannot tell if the woman was offended or scared or what but I don't think she touched Ky again that night! LOL

The next day we were released and we were home by noon. It was a whirlwind trip and I am glad that we are done with it. I am sure it will be good for Ky in the long run. It was a tough decision but its over and done with now.

HOW to give??

There are a million ways to give. For us as a family who deals with so many medical issues... I cannot tell you the number of times that people have asked us... what can we do? When you are in the middle of such stress like your child being in the hospital or having surgery etc... you cannot think straight. Its hard to ask for help when you feel like there is nothing that can help... other than the docs and nurses.

I wanted to share a short list of things that you can do for families who are dealing with medical issues... be it their child, mother, sister, etc...

• Bring a meal to the hospital.
• Cook a freezer meal for when they go home.
• Stock their freezer / fridge with items so that they don't have to go to the store once they get home.
• Offer to run errands... just going to the grocery or pharmacy is a huge help when you can't leave your ill loved one.
• Steal them away for a pedicure or massage. The one thing that kept me going through the heart surgery month was when my best friend drove 6 hours to drag me to a hotel to sleep... go to dinner and go home to do laundry.
• Offer to pick up their mail and bring it to them at the hospital. I cannot tell you how many late fees we have paid on bills simply because we were not home to GET the bill!!!
• If you are not a cook or even if you are... give a gift card to a restaurant in the area of the hospital. Just knowing that you have that card to spend whenever you need coffee or a burger without worrying about finding an ATM or what you bank account balance is... is HUGE!
• Clean the house, the fridge, etc.
• MOW the grass or take in / out the garbage. If you see a friend's lawn overgrowing... just mow it... don't ask... just do it! We were moved to TEARS when we came home to a perfectly manicured lawn that our church friends had taken care of for us.
• Bring a new toy to the child, magazines to the parents... the hospital hours run together... night turns into day and even a short stay can seem like YEARS!
• Leave a note on their caringbridge, blog, website or even a simple text message just to say you are thinking of them.
• Call them to remind them of a sale or something "normal"... from home like that its Thursday and don't forget that Grey's Anatomy is on.
• Offer to take their car to gas it up... nothing stinks more than only having an hour to get home to shower and get back and hopping in a car with NO GAS...
• Give a GAS gift card if they are far away.
• The perfect gift to give any hospital family is a plug in for the wall like Bath & Body Works Wallflowers... that way their room doesn't smell so "hospitaly"... or a nice lightly scented air freshener spray... Febreeze ones are great! The bathroom doors always open straight into the rooms and it stinks to have to "go" and then stink up the entire room! LOL
• Crochet or knit a special hat, booties, or blanket for the child. Use good soft yarns because we usually don't wash them at the hospital... but its nice to have a little something special to keep your child warm.

These are all small things that make a huge difference in the lives of those who you give to!

Its not about what you HAVE... its about what you give...

I was watching Extreme Makeover Home Edition tonight and they blessed a family with a new home who were ministering to teenagers in their town. They lived in a trailer and their grown daughter was living there with them with HER medically challenged baby.

Maybe its just because of Kyleigh but when they opened the baby's new hutch and it was completely stocked with diapers, wipes, aquaphor, and butt cream... I just lost it! Somehow its the butt cream that always gets me. What is it with me and the butt cream?? I don't think its so much the cream itself... I think its all the butt cream represents... such a simple thing yet so out of reach for so many.

At the very end of the reveal the man who owned the house said: Its not about what you HAVE... its about what you DO. I truly hope that at the end of my life... if no one has anything to say about me that they will be able to say that I GAVE. I wish I were rich and didn't have to work all the time. I wish I had endless funds because I surely would know how to give it away!!

As a side note... a beautiful client of mine stopped by our studio the other day... she is an Arbonne Representative and she came through the rain hauling this box that was bigger than HER!!! FULL of all natural arbonne baby products... butt creams included!!!!!!!!!!!!!! She donated them to The Giving Love Foundation and I cannot wait to give them away!!! What a sweetheart! I meant to take a pic but I forgot... I definitely will tomorrow!!! Huge hugs and Thank yous to Anne!!!!

So I talked to Megan tonight...

I had to call her to catch up on Kyleigh's newest plan and we were talking about the neurosurgery. Megan is our pediatrician... btw. She reassured me that Bob, the neurosurgeon, is a great surgeon and that he will do an amazing job with Kyleigh. I am sure she is right... I am sure that everyone is right. I have never heard a bad thing about Bob, yet here I sit totally freaking out inside. I feel this insatiable need to talk and talk and talk... and I just feel like I have diarrhea of the mouth and I feel that if I just talk until I pass out then maybe I won't have to think about it or stress about or cry about it.... and then my mind crashes in around me and I end up with a headache. I am going to take a Xanax now.......... and go to bed.

Yes I post a lot on PRE OP weeks......

When I get nervous and anxious my mind start running wild and I cannot sleep... I write. So here I am ... at 1:22 am writing.

I am a photographer to capture those moments that I never want to forget yet I cannot manage to get those moments while LIVING them at he same. Its so neat to see an outsider's perspective on your life. There are so many moments over the course of the past few years that I so I wish had a photo of. So many things that were so very amazing but passed by in fleeting moments. Those momemts will exist only in my mind and I so wish that I had something tangible because when I close my eyes they float by mind and bring tears .... We have spent a great deal of time collecting these moments but I am afraid that I will forget those minutes of our life that I hold so dear. I am afraid that the stress of life will wash then away. There were moments that I held so sacred I did not feel that I could disturb them with a photograph but now wish I had. That is why what I do is SO important. It is not a luxury. It is a necessity. I am not taking pictures... I am creating memories of moments that pass us by all too quickly.

There are things that I am already forgetting about my kids... like owen and his "owenisms" that he has now grown out of. Ross and his priceless drawing out of words that only have one syllable. And Kyleigh... there are so many with her that I cannot even count.


So for this last surgery (or what we hope will be the last surgery)... my dear friend Lisa Zanchi wil be coming to stay with us the night before the surgery. She will go with us to the hospital on the morning of the surgery and follow us through our day... from packing our bags to comforting my doped up baby after surgery. I want to see it from the outside. I want to remember every moment... every tear... every stress... every joy. The one thing that makes me sad is that this is not a Joe surgery. I wish that I had had Lisa come to one surgery of his... I mean jeez. We spent nearly an entire year in Joe's care and have realtively few pics of him and Ky together... that kind of makes me sad too.

I don't know why there is such an upheavel in me about this whole surgery... its not that my mommy radar is saying NO- STOP. I don't get that... but I have not felt THIS kind of anxiety and upheaval in my soul since the heart surgery. I was a little nervous but more excited about the PSARP. I was 100% confident about both the Closure and g-tube. I was not even nervous about them... I knew beyond a shadow of a doubt that those were right. I could have defended those procedures and surgeons to the death... because I KNEW.

This time... I don't get that... I have a great uneasy feeling that is growing by the day. I am glad I have a busy weekend to keep me from lingering on this for too long.

A dear friend of mine today asked... WHY?

We see so many horrible things. Misfortunes, financial strains, illness, death... sometimes its hard to understand WHY. I have stopped trying to figure that out. The past three years (yes we are going on THREE years of this "new normal" life now!) have lead me on a journey that has forever changed me. I will never be the same and hopefully I will be able to reach out to others and help them on their own journeys!

If you haven't seen the movie Evan Almighty... go rent it tonight! I think there were some amazing profound thoughts amongst the adorable comedy!

At one point God (Morgan Freeman) says:
Let me ask you something. If someone prays for patience, you think God gives them patience? Or does he give them the opportunity to be patient? If he prayed for courage, does God give him courage, or does he give him opportunities to be courageous? If someone prayed for the family to be closer, do you think God zaps them with warm fuzzy feelings, or does he give them opportunities to love each other?

I truly believe that one must weather the storms to see the rainbow. If we were given the rainbow without the storm we might walk right past it and think "oh that's nice". But after weathering the storm we see the rainbow and the colors are brighter than we imagined, the sky is bluer, the flowers smell better, and life in general is a much nicer place to live in.

Each time something comes along that I feel like I cannot deal with instead of breaking down I thank God for the opportunity he is giving me. Now that is not to say that God and I have not had our differences... we have those on a daily basis and I have questions that may never be answered...but I know that the opportunities we have been given and the experiences we have had are things that I wouldn't trade. I would trade the pain that my child has been through and would have gladly taken that for myself... but I am incredibly blessed to be sharing this journey with so many .... I am a very different person than I was three years ago and that is a good thing!

I believe more than anything I am being SHOWN things I NEED to experience and see to be able to say... "I've been there". I have been where YOU stand and you will make it. I promise. The only way to truly be able to say these things is to have experienced them.

Cotinuity of Care ... a lesson from our cardiology appt.

Before I start my gripe I have to share GOOD news!! Kyleigh's heart looks GREAT! So great that the cardiologist did not feel that she needed an echo!!! After looking at her echo from January he said that he was not worried about the mitral valve leak because it was very insignificant. He gave us a letter of clearance for our neurosurgery which is 5 days away and we are off and running - hopefully toward the end of the race!!! Notice I said "HE"... and that our cardiologist is a "SHE"... yes we will get to that in a moment. We actually ended up seeing Dr. Tim Bricker.

Ky was very cute. She was unsure of Dr. Bricker in the beginning but by the end she let him carry her around and when he asked for a HUG at the end... she puckered up and kissed him right in the mouth!!! We all died laughing... in our house Hugs and Kisses come together! So... be forewarned- when you ask Ky for a hug there will more than likely be a kiss on the end! I was floored!! Troy was funny too... he told Ky... "oooooooooooooooooh I am gonna email JOE and tell him you are cheating on him!!!" OMG hilarious!

Bricker says that they will continue to watch Ky for a while because its a pretty common thing for the AV Canal repairs to start leaking in the mitral or tricuspid valves or to end up with something like an RVOT obstruction. He also said that Kyleigh has a higher risk of that because during her surgery they had to resect a muscle mass which meant that her heart really looked more like a Tetrology of Fallot heart than an AV Canal. If you will remember back when I was pregnant this is the term that they were SO concerned about. They looked for it at every US. We already knew this was a possibility because Dr. Eghtesady had explained that to us after surgery. He said that most kids will not start showing signs of this until they are around 6. We have a long time to hold our breath on that one. So... we will continue to go to the cardiologist every 6 months unless they find something else.

Now to my vent. What ever happened to continuity of care? Our appt yesterday was scheduled with DR. COTTRILL.... did we get to SEE DR. COTTRILL ... well hell no we didn't. Did anyone call to tell us she wouldn't BE THERE? NO. Am I a little miffed about that... YES. If wanted to go to a practice where we would end up seeing just any old person when we went then I would find another practice. As nice as Dr. Bricker was he still had to take time to READ her chart and figure out WHO she was and WHAT we were there for. Can one REALLY assess a person situation having NO background on them? I think not.

Now I know I am anal retentive, OCD and everything in between. I openly admit that. Dr. Bricker is the head of the Children's Hospital. Any other person would have been happy to see Dr. Bricker and not that we weren't... he is a fine doctor... great with Ky... nice guy... I just do NOT think it is any patient's best interest to see one doctor for an entire year and THEN have another doctor walk into the mix. I can understand if this was not preventable... like the doctor moved out of state or something... but just to show up to an appt and end up seeing someone else without being informed of what was happening?? That really makes me hot around the collar.

Then I think about this... what can I do about this? A big fat nothing. So I will sit here on my blog... and quietly bitch to my readers and to myself to make myself feel better but really there is nothing to do. I cannot change the system. The only thing I can do is fight for a better experience and better care for MY child. And THAT is what I intend to do!

Ky's first playdate!!

Today Laura and Emma Jenkins came down from Cincy to visit us!! It was a GREAT day!!! Emma is such a cutie!! She is recovering from her third PSARP surgery. This time it was done right by Dr. Levitt in Cincy. If you all will recall this is the same surgery Ky had in August and by the same Doc (minus Joe). Emma had a bad experience the first two times and I was soo ecstatic to see her today. She looks amazing!!!!!!!!!!!!!!!!!!!! We hung out at the house for a while and then went to Chick Fil A - YUM!!! And it was a great excuse to make me clean my house! Which I needed to do seeing as how we are having surgery next week. Here are a couple of quick snaps from today!

The Giving Love Foundation

I am incredibly excited to announce the formation of The Giving Love Foundation. Just under a week ago I started a post on a photography forum that I a member of about several families who were dealing with life altering medical issues. I made the post in response to a thread that was a bad situation and I had hoped just to help them see what was really most important. Literally overnight it turned a huge outpouring of LOVE and donations for SEVERAL families. The family I listed below "Lilie's Family" who we are sending to the Ocean was the second.

The first was a family with a baby who simply needed some butt paste. While it may not sound like a lot ... the stuff is EXPENSIVE - like up to $16 per tube!! We managed to get the stuff covered for Kyleigh through the Commission but if we had not... we would not have been able to afford the supply we need either!The members of the forum banded together and today I had the HONOR of delivering the FIRST official Giving Love Foundation gift to Joe!!! WOW... is all I have to say. I was so glad to be able to help this family and even though I was not able to fund this effort myself I am so incredibly proud to be a part of a group that means so much to me and now MANY others!
From these first two efforts is coming the foundation. It will be co-founded by myself, Cher Salo (owner of the forum) and Suzanne Upton. Suzanne's son was born with paralyzed vocal cords and if you look to our "friends" list on the right... and click on PARKER... that is Suzanne and her family!!

Here is the story of The Giving Love Foundation's first effort- I know my narration will never do the actual event justice but I hope that it comes close! I truly wish that everyone could have been there today!!!When I arrived home on Saturday evening the snow was falling... it was pitch dark but I could see the wonderous outline of four boxes standing tall on my front porch. The snow was drifting right up to them but it didn't matter because I know that what those boxes contained was something so truly precious on so many levels that I was completely humbled to even be the bearer of this thing!! I jumped out of the car and into snow over my ankles and went running and crying to my front doorstep!!!!

As we unpacked the larger boxes I counted them... there were 52 amazing tubes of ILEX. A literal one year supply ... It meant so much to me not only because I know how much its new family appreciates it but because this year our family kind of missed Christmas. YES I will admit our Christmas tree is still up. Maybe I am paying homage to this holiday that was stolen... but maybe it was waiting for this particular evening. I felt the spirit of Christmas in my home like I had missed so much this year!!!
I could have nearly burst with excitement and of course I had email the pics to Joe and to Cher and Suzanne and the whole board!! I am sure Joe thinks I am completely nuts... but oh well! I can't help it!


Today... I waited in the clinic today for Joe to arrive back from his meeting and pick up the box of ILEX.... When he finally arrived the resident was still chattering away about some on call issue and the whole room was abuzz getting ready to start clinic hours for patients. Joe stood there for a moment just staring at the box as if opening it would break the sanctity of the contents. I don't know what he was thinking... but I would love to have been inside his head at that minute!! He gingerly lifted open the box's flaps and in complete silence he dug his hands into that box as if he were sifting through gold coins. Joe, the loudest, moist boisterous person I know was rendered completely speechless and for nearly a minute we just stood there. The whole room was silent not because it actually was but because it was tunnel vision.

He and I knew what this meant and I could feel the literal weight of what was happening my shoulders. What a gift. There was nothing to say. How do you say Thank You for a gift like this? How do say you are welcome to someone who has given so wholly of them self and wants nothing more in return than to continue caring for his patients in the best way possible? There is no way... those two words cannot encompass all that you want to say... there is only one word in the human language that can be used to describe this... LOVE. Looking at those red and white tubes in that box I realized, we were not staring at just some butt paste. We were staring LOVE directly in the face. The LOVE of so many people who donated these gifts were all encompassed by this rather medium brown box. The LOVE of two parents for their child. So simple, so normal and yet so extraordinary! It is so true... Giving LOVE Grows LOVE!!!!

As I was leaving the only thing he could mutter was "Truly... thank you. You have no idea what this means."

The thing is... I do know. I know what it means to need something so simple and to have everyone tell you no. I also know what it means to receive a gift of love because its something that I have experienced many times over from our amazing little group

The Giving Love Foundation has started its life with an amazing and wonderful project. I know this is just the beginning and I am humbled and honored to be a part of it.

We are currently in the process of establishing our Board of Directors, Advisory Comittee and filing for the 501c3. WOW... I never imagined that the ripple I started would turn into this... I could never in all my life ask for anything better than this! I am so incredibly amazed and honored!!!

What a day!

I have a really exciting announcement to make but first I have to tell about our pre-op day. I think that we are going to go ahead with the neurosurgery and with Bob... I trust Bob... I do not feel that he is inept. I still worry about the hospital itself but when we met with Anesthesia for Pre-op we re-iterated SEVERAL times that we would like to have Dr. Reddy do the anesthesia and that Dr. Brown was our second choice because those are the only two people who have ever put her under at UK. Dr. Reddy has been with us since Ky was born and would definitely feel more comfortable having her with Ky... plus she knows all Ky's little quirks.

We had her labwork and urinalysis done and I am assuming they will call me if there is something weird. Wed we will see Dr. Cottrill (cardiologist) for her one year heart check up and echo. Yesterday I was extremely anxious about meeting with Bob... he is very extremely low key. I am obviously NOT that... but you know.. maybe that is what we need in this situation... I think my main concern is this.... Is UK good enough without Joe? Everything was relatively good throughout our stays in the past few months but knowing that there were MANY times when I could have just lost it but those issues were alleviated by Joe... being there... available and taking extra good care of us. And its not to say that we expect Bob to BE Joe... because we don't... we think he is a nice guy and genuinely have enjoyed talking with him... Most of all I am having to come to terms with the fact that not everyone can be a "Dr. Joe" (which is very different than being JOE himself....) and we are incredibly lucky that the majority of our surgeries have been under Joe's umbrella... and this time there will be no Joe. I mean... holy crap I about died when Bob said he RARELY ever uses email .... ugh.


Today is also the one year anniversary of Ky's SECOND heart surgery. Today could have been a hard day for me but I spent it doing one of the BEST things ever.... which leads me to my NEXT post and announcement!

I close my eyes...

and I go right back there. I can remember just how it smelled. I remember how the cool air blew on the back of my neck while I slept and how the horrible plastic chair made me sweat even though I was freezing. I remember the exact shade of gray in the flecks on the tiles, the exact yellow blue and green shades on the curtains. I feel my chest get tight and my heart races... instantly my whole body is tense and once again I am overtaken by it all. The beeping of so many things, the swish that the glass doors made when they were opened. I remember the sound of the footsteps and flowing coats as they came down the hallway and how I would pace waiting for them to open our door. I remember the faces of every single nurse who took care of us during our nearly month stay in Cincy. I wish like hell that I could remember their names... and I should have written them down.

What will haunt me the most is that I will never forget are the tubes... I remember the exact location of every single tube, line, lead, iv, if, central line, art line, and O2 monitor... and these tubes and lines and leads that were saving my baby's life... I hated them... in a way that I cannot explain. I took out all my anger on those tubes. Maybe they were just a distraction ... maybe I needed something to be mad at and hey at least I was mad at the tubes and not at someONE!! But I remember being so angry and knowing what scars those tubes were going to leave on her.... and I was just angry. If there was ONE thing I wish about this ENTIRE thing... I wish that I had gotten to hold her for even one minute before they ravaged her body with tubes, and scars and colostomies, and feedings tubes.... I hate it for her that she will be FORCED to explain when she doesn't feel like it and people will stare no matter how badly she wants them not too.

Maybe as a heart mom I am more finely tuned and know what I am looking for ... maybe normal people would miss this ... but the Urology PA who placed Ky's foley cath... I saw it when she leaned over ... that tell tale midline scar... hers was a nice one maybe a more recent one. The bridesmaid at a wedding... and I never say a word to them .... NEVER. Because I think that one day that will be my Ky and maybe just maybe... she won't fe