"But she will be okay eventually right?"

This is one of the most common comments that we get regarding Kyleigh. While it is such a blessing that she will for the most part should not be teased because she "looks" normal.... it is also hard to KNOW what we deal with here at home and know that there are very few people who really understand that our Kyleigh who "looks great" is in fact NOT great at all. She hurts every day and I know this. She FIGHTS every day and is in need of medications to help her do things that should be very normal. Without medical intervention my baby would not POOP or EAT. Those are two of the most basic life functions and I am so thankful that we have such amazing medical interventions that are able to help her through.

So... starting today I am going to go through a couple of posts that show some unique ways that our lives have changed and some things that affect our daily life so much that we have to plan around them.

DAY 1: Pooping.............

Alas I never thought I would be HAPPY just to have my kid have a major blowout but truly we are. Anytime there is a full diaper that means one more day that she is not running the risk of bowel obstruction, impaction, another surgery, etc.

Each day we give Kyleigh adult sized doses of laxatives to force her bowels to work. If left to their own devices she would not be able to produce a bowel movement and would end up impacted in a relatively short period of time. She would also dehydrate herself which is dually dangerous because her heart has been repaired and it is very important that it not be stressed by dehydration. Enemas, milk of magnesia, miralax... sometimes combinations of multiple things are the only thing that works.

Last night we had a "normal" night. Her belly was swollen and hard... she just needed to poop and couldn't. She was crying and screaming. I gave her Mt. Dew which one would think is not good for a 2 year old but it has a laxative effect between the caffeine and the carbonation. She would squat in the doorway holding onto the edge and turn blood red trying to make a poop. While she was able to get out small amounts we have learned to tell the difference between a cleanout and a small movement. I put her in a warm bath hoping that she would drink the bath water... soap is also a natural laxative and is actually used in many enema recipes. That produced nothing. Finally before bed we broke down and gave her MORE laxative and finally after she relaxed overnight she pooped. Once again this was NOT a cleanout. When you push on her belly (also called palpating the abdomen) on the right side you can FEEL that it is very hard inside. That means there is still poop in there that needs to come out.

The following (yet again crappy Iphone pics but it is what I had on hand at the moment) are pictures of her literally writhing in pain. She was reduced to a pile in the floor trying to have a bowel movement yesterday. Curled up like a turtle with her knees under her, rolling around, crying, pushing on her own belly... THIS is what we deal with at LEAST 2-3 days per week... sometimes more. When she starts to hurt or cannot have a bowel movement we just have to head home... either to give more laxatives, try something else or do an enema. Her pooping schedule literally affects our life on a daily basis.

This is the Kyleigh we rarely allow people to see. I don't want people to know Ky as the "poor little sick kid" but I need people to know that when you call me and hear her screaming in the BG... that I am NOT torturing her. I must do these things to help her... trust me I don't WANT to... but wanting to and HAVING to do these things are two different things.

I NEED for you to know that my child is sometimes miserable and there is not a whole lot I can do to help her. Even enemas sometimes take hours or even overnight to work....
Lucky enough for her she does not EAT real food so we don't have the additional considerations of diet but eventually we will.

Even after we DO get a poop we spend our time analyzing... is it enough, what is the texture, smell, color. Each of those things tell us something about her system and how it is working. Last week two days in a row she produce "bacteria" poops like she had when she had a colostomy... which means that her bacteria flora in her digestive track was out of whack... we added a little more probiotic (Culturelle) to her feeds and that seems to have taken care of it. But we ALWAYS fear that she will end up with bacterial overgrowth or infection in her intestines which is what has caused her intestinal swelling and motility issues in the first place.

So........ that is just one small part of our daily life. Tomorrow I will tackle PEE... yes... that is another issue in itself.

The cycle continues........

Of course the ever famous cell phones pictures... I swear I am going on ebay RIGHT NOW and getting myself a decent Point and Shoot camera! LOL I am sick of myself... I mean... am I a professional photographer or what???

I feel like we are on this endless roller coaster... this constant up and down, round and round and I just keep wondering if we will ever get off. I guess I will just be content to know that as long as we are not crash landing then we are good to go. We had to drive to Cincy today, which normally is NOT that big a deal but with the construction on I-75 and the rain it made for a pretty awful drive. This is the second time in two weeks that we have made the drive and we have to do it again on Monday. We didn't get to see Dr. Alam (Urology) today because he is not in clinic until Monday... today was just the pokin and prodding day! YUCK. I really feel for Ky. In the middle of everything she is so cute. She laid there through the Urodynamics testing and watched Curious George and played with the bubbles. I do have to once again comment on how flippin amazing the child life department is at Cincy. Ky always has her own dedicated Child Life person during procedures like a VCUG or Urodynamics... they play, sing, watch movies, blow bubbles. Whatever it takes to keep her distracted and calm. I am truly truly appreciative of them!!!!!! And of course Shelley was great as always. I think she is the only one who has ever done Urodynamics studies on Ky... so we wouldn't know any different but she is great. Honestly Ky does much better with the Urodynamics than she does with the Renal U/S. The good thing about the UD is that once the caths are in you can leave her alone and she is fine. With the U/S they are constantly touching her which she HATES.


Anywhoo... we won't know any results from these tests until Monday. That seems SO far away but I know just like everything else it will come and go all too fast. Ky is napping now... she decided to unload her diaper bag in teh car and made a complete mess and THEN I gave her my makeup compact to "play" with... and she normally just plays with the mirror... oh no... today she decided that she was going to PAINT her legs with the liquid powder foundation.....

Terrible twos anyone? My sweet little sick baby has turned into an adorably irritating loveable two year old terror! God help me.............

Well I made it through my weekend from ...

Yup... and I am alive to tell the story! It actually went really well. Busy but good! Not nearly as bad as I had anticipated! I have actually start two posts to the blog and deleted them just because I was a rambling emotional mess.... wedding season always brings up emotions in me that I manage to surpress the rest of the year. I totally and completely lost it during the Father / Daughter dance. The bride's dad gave a speech about his daughter was flawless and perfect and I thought to myself... I wonder if Troy will say those kind of sweet words about Ky at her wedding. And then I my quiet car at the end of the night and I cry again... because the tiniest part of me wonders if we will even get to have a wedding and cry as she dances with her daddy. I know that any one of us could walk out the door tomorrow and be gone but for us, living with Kyleigh and facing issues like we do daily we are constantly reminded of this and that can do a number on your emotional health.

And its the dumbest things that seem to set me off any more. I can handle all the huge major things but stupid little things just make me loose it! I swear I cannot get it together! Like last week... I got an email from the doc in Cincy who was the lead researcher for GI issues related to children with Anorectal Malformations. He had spent years collecting data and now is leaving Cincy. His research will meet eminent demise in June when he leaves because there is no one else who is willing to keep the research going and his lab will be closed. I guess a part of me is really disappointed. This could have been something that could have been a huge help to Ky and other kids like her. There are only really THREE researchers in America who are actually doing anything related to our VACTERL kids and we have now lost one of them. You know you try to hold out hope that things will change... answers will come... procedures will be proposed to help Ky but around every corner there is something that is harder to comprehend and more devastating than the last. The hits just keep coming and it was just one of those nights when I just don't get it.

At least with other diseases there are people who are doing research to find a CURE. Our kids don't even have that hope... there is no cure and no one seems to even want to find a reason why. I just don't see how it is fair for these doctors to tell us that our kids "will learn to deal"... they shouldn't have to.......

Then in the middle of my madness of the weekend I managed to get a phone call from the Genetics department at Cincy saying they could work us in at 9 am on Monday morning (today) but I had to let them know by the end of the day on Friday... well I did not even get to check my cell phone messages until 10:30 pm... SOB. And then today I check my message at home - which I RARELY do... and there was an appt in Motility for us on Tuesday... missed that one too. I swear... I cannot win for loosing!

So... that is the last week in a short post. Frustrating. Sigh..........................

Living the Dream....

Risk more than others think is safe.
Care more than others think is wise.
Dream more than others think is practical.
Expect more than others think is possible.
-West Point cadet Maxim

Well my wedding madness has officially begun. Friday night was just the start of what promises to be an amazing and insane summer! I had the opportunity to photograph a bridal session, wedding reception, and Evening of Champions Benefit Gala all in the same night!!!

We were scheduled to be at the reception from 7-9 pm... the Benefit started at 7 pm... I checked in about 6:30 pm and did some initial shots of the ballroom and the amazing setup... rushed off to the reception... which rang long ... at 10 pm rushed BACK to the ballroom... just in time to catch the live auction. When we walked in the door Joe immediately spotted me and I finally got to meet his wife in person!!!

I just have to stop the story here for a minute and tell you what an absolute doll Susan is! I mean I already "knew" that... heck she puts up with Joe! (ROFL) But truly I hope that this will not be the last time that we get together. I really really enjoyed getting a little time to chat with her. In many ways I have to thank her also. As much as Joe is the one whose hands have saved my baby... Susan's sacrifices have given him the ability to do that. We owe her just as much as we owe him and THAT is a lot... everything as a matter of fact.

We didn't get to stay around the Derby Eve gala as long as we had hoped but we were half dead. It was still a blast none the less.... I will post a link to the galleries when I get them all up and online!

At the gala I managed to run into tons of people that I have made acquaintances with over the years. One in particular I was able to talk with for quite some time. I used to work with her at Parks & Rec. She had seen me grow up there... I started working there when I was 14!!!! When I left there I left with a dream to start my own photography studio. It was very surreal to me to be standing there at this benefit with her and her boyfriend and listening to compliments on my work and she was explaining to him how I had just decided one day that photography was what I was going to do... I set out on my way and just did it. I never really think of myself as anything great or even good. When I see my work I have been trained to look for the imperfections. I am always my own worst critic but that is the only way that growth can happen.

In spite of how hard I am on myself... in that moment it instantly hit me... I had a DREAM... I made it happen with my own two hands. I am living the American Dream! WOW. I never imagined that I would consider "this life" a dream but really when you think about it... it very much is. No matter what we are in the middle of, we find ways to make sure that we enjoy our babies and our life. We choose to laugh rather than cry. We choose to hope rather than fear. We choose to be proactive rather than being confused. We choose to give more than we receive.

I have always had the drive to succeed, but its the choices that have made all the difference. I have to CHOOSE to succeed no matter how fulfilling or hard that choice is. There are many days when that is the hardest choice I can make. I choose long nights and lost sleep. I choose stress and missing vacations. I choose these things because in spite of them all I find fulfillment in the smallest of moments when I hear someone say "your working is just amazing"...

The same drive in me that allowed me to get this far in my business that has also taught me how to become the best mom I can to Kyleigh. I have been looking at life like this:
everything that happens to Ky is for a reason...

Maybe I have that backward. Maybe everything that has happened to me has only been leading up to now and preparing us for what is ahead... maybe everything outside of Kyleigh's life is what enables me to deal with her situation. Instead of the opposite...



Although there are days when I think I might rather be living the Canadian dream (free healthcare!) I am truly truly blessed! Even in everything that we go through with Kyleigh we have amazing people to guide us through, hold our hands, laugh and cry with us. We couldn't ask for more!!! We have jobs that allow to take off and go wherever and whenever we need to to find care for Kyleigh... and we have the wits about us to keep pressing forward and making sure that we are doing everything we can.

Remember Lilie and her family?

Images courtesy Cristy Nielsen - www.cristynielsen.com

As one of the first efforts of our Foundation we were able to send Lilie and her Family to Daytona Beach for a week, all expenses paid, to spend some much needed family time with her. Make a Wish denied Lilie a wish because she was under two years old but the problem with that is that she may not live to be two. If she does, and we very much hope it is so! I hope that they apply to Make a Wish AGAIN. This family does so much each day to care for their daughter that they deserve the break!

It was a huge undertaking and several hundred people donated to Lilie's trip. I know that some of you who read my blog did also! Without further ado... yesterday Cristy Nielsen, a photog friend of mine, phtoographed the family. Here are a few pics. I know that Jen has taken many more during their week on teh beach and I so look forward to seeing those also!


I truly hope that Jen, Steve, Savannah, Destineay, Kaden and Lilie had a great time this week!

Its About TIME!

(stupid iphone pic... from the professional... yes I know...)

That we got some GOOD news! The past week all around has been GOOD news in terms of Kyleigh. I don't know that we have really located an ANSWER to our issues but in terms of her overall health and human dynamic I think that the things we have learned this week are really a huge relief! Especially with the huge nagging feeling of misgiving that I have had this week my mind is resting a little easier now. I still don't think we have found the ANSWER but is we can try some new things to see if it can help her then I am good. I don't care to have an answer just for the answer itself I just want to see Ky feel better!

What we know from this week. Her motility is still not great. But overall her colon look a LOT better than it did months ago. Also her motility is not bad enough to warrant those meds that are so HARD on her system so that is a relief. Overall her anastimosis (the part when they put her colon back together and closed the colostomy... ) looks great which I am VERY happy about.

Yesterday we had the seemingly unending tests. We got REALLY lucky that Ky ended up sleeping through the last two. We were in the flouro room forever... several hours. We had an upper GI and found that she does reflux, which is expected with a g-tube like hers. She actually has moderate reflux. Joe said we could think about zantac which we used once and didn't really do anything for her. But we do still have prevacid granules here. Reflux would be great to pinpoint and say "this is it" but it still doesn't explain the fevers, straining to poop, or puking sitting straight up in the car. If it was all at night when she was lying down then I would be gung ho to say YES and call it a day.


Then we had a VCUG and I think we can declare that her Kidney Reflux is resolved!!!!!!!!! She is still showing no signs of Relux! You have no idea how happy that makes me! Just knowing that her kidneys are being protected is enough to keep my going and keep us cathing is with diligence. Every time we are having a bad day with the cathing I can think to myself "I really AM saving her kidneys!" And KNOW that I am doing something that IS helping her. Having that reassurance is GREAT! Bad news... her bladder is ginormous now. We went from a capacity of 120-150CC about 6 mo ago to almost 300CC this time. That is NOT GOOD. Not good at all. I don't know what that means in terms of her total body system but we DO know that if Ky is NOT cath before every feed then she WILL throw up. I just don't think there is enough room in her tiny abdomen for her bladder and her stomach both! Also makes me wonder if her pressures are up again too..... Just to compare a normal ADULT bladdder is only 400 CC... so Ky's bladder in her tiny little body is nearly as big as MINE!


We also had a small bowel follow through... after nearly an hour and a half we we were still waiting for the contrast to enter the colon. When she sleeps her whole system slows WAY down... but lucky enough for us she slept through the entire last leg of the test. And yes.. NO ONE DIE... my kid fell ASLEEP during the tests! I never thought I would see that day and am SO GLAD to know that she has the ability to do that!

My official KUDOS to the Flouro and Radiology Dept!!!

I also have to say that with each new issue we manage to come in closer contact with different parts of the medical team at Kentucky Children's Hospital. I wish that I could give these people the world. More than seriously. Dr. Kriss and Melissa (Radiology) were with us for HOURS yesterday and as always are so attentive, and sensitive in trying to make sure that the process is as painless and least scary to Ky as it can be. Melissa and Ky were playing peek a boo and Ky almost let Melissa HOLD HER! that is so huge. She still is not a fan of Dr. Kriss but at least she doesn't hate Melissa! LOL Since we have started frequenting the Radiology Dept I have been noticing changes! And these are GOOD! The last time we were in we found that there was a new sand table and kids chairs, coloring books and crayons, and the whole rad dept has been repainted and I believe has new chairs. It doesn't feel like such an "institution" now.

To Dr. Vesna Kriss... I cannot say enough good about you. I am constantly amazed at how thorough your descriptions are and feel it a privilege to be able to have you on Ky's team. Thank you for always including us and for explaining everything with so much detail... from the procedure itself to what we are seeing on the screen it is really refreshing to know that someone understand that we like being involved and informed. You always approach Ky knowing that she has been through a lot and take on the procedures in a delicate and caring way. Even just being quiet when she is sleeping and making sure not to wake her up when she was on the table... those little things mean so much to us. To know that someone cares more about my baby as a person than as another procedure or another number... THANK YOU.

To Melissa... What a doll!! Gosh we luuuv u! LOL Thank you for always being so much fun and really trying to make friend with Ky. Thank you for always going out of your way to make sure Ky had the RIGHT tape... or flavoring in her barium. Thank for being so sweet and so caring and sensitive to our baby's needs. Even though she is very strong willed little girl she is still a baby and I am sure fears things just like everyone else! I truly wish that we did not HAVE to see you and Dr. Kriss so much but it is nice to always know that you guys are there ... if we have to end up in the Flouro room we would never pick anyone else to be there with us!! THANK YOU!!!!

It amazes me how much KCH and UK is moving along just in the short amount of time that we have been "frequenting" it. I am honestly tell our friends with PRIDE that our daughter has the majority of her care managed at UK. Everyone is always surprised but I am not. Having spent hours and days and weeks with the PEOPLE at UK I am so happy to say that Ky is cared for by each of them. I always tell my friends and anyone I talk to ... PLEASE go into your KCH experience with an open mind and heart. Don't have pre-conceived notions and be positive. There are GREAT people there and they are more than willing to help... you must CHOOSE to allow them to be a GOOD part of your life!

I don't know why I am here posting again tonight but its 2 am and I cannot sleep. I don't know why my spirit just cannot rest tonight. I can't pull myself away from the computer... I don't know whether I am more afraid of finding something tomorrow or NOT finding something. I am sorry... I am just rambling but I feel the need to talk and not stop because I feel like if I continue to talk then maybe I will talk until I make something of the the million thoughts in my head. I don't get THIS kind of restlessness often. Usually only before we are going to learn something or have a really bad day experience. The nights before our Uro testing, before the open heart, before the MRI that didn't happen... Its as if I can't seem to quiet myself and honestly I am not inclined to. I truly feel like my soul knows something that my mind doesn't. Its times when I remain restless like this that some kind of understanding is on the horizon. Tonight I feel the need to sit here and allow myself to be still and listen. To what, I don't know but I am sure that I will soon find out. The main problem is that I don't know if I WANT to know. Seems like every new discovery is something more awful than the last. I know tomorrow will be hard for us emotionally but for some reason it cannot come soon enough. I have begun to prepare myself for the fact that this may not be something simple as much as I would hope that its a simple GERD that we can take some prevacid for and fix it... I have accepted that if it is not, whatever this is... we will fight it with everything we have. During a tear filled prayer today I told him that I accept this. I am willing...No matter what ... I have truly been trying to make some life decisions lately about life in general, whether we would consider having another baby... we always said we would have 4. The business... our finances... I absolutely love what I do. I truly do. I have given every waking moment that was not devoted to Ky to my business for nearly 3 years. I have made sacrifices for it and I have been determined NOT to give up. I knew that it would not be easy. The entire time that I have kept pushing and moving forward I have gone on the assumption that we would be able to "fix" Ky. Every day that passes makes me wonder if that is really possible. I have been forced to think about our life and my business. I have thought of how it would hurt my heart to close our studio but truth be told, if Ky's care gets any more intensive than it already is... it will be humanly impossible to maintain Ky and the studio both. My pride, my faith in myself that I can actually EXCEL at this business... I have no doubts about my artistic ability but technically the photography business itself is a nightmare. It is a VERY intense thing in and of itself. While my business is one of my biggest stresses it is also my biggest release. It is my one solace. NO matter what kind of day I am having and what kind of stress I am going through I have the innate ability to STILL create these images that are ALIVE. I hurt when I think of the possibility that this studio may just not be in the cards for us right now but as with everything I step back and look at my life and the things that really matter are abundantly apparent. I would give my own life to see my baby girl be healthy. Anything else is just details.

Tomorrow is another big day. We have to visit the WIC office to get the newest shipment of the "golden" formula! LOL Then we have to go see Dr. Kriss again (radiologist). Ky will have a VCUG and an Upper GI at the same time. I am pretty sure this is NOT going to be a GOOD experience for any of us. Ky hats them both and other than just strapping her down and working as fast as we can I don't know of much else to do. This newest round of testing is proving to be the hardest thus far on my emotional state. The rest of the issues we have dealt with until now have really been life or death. We didn't have too much of a choice in the matter and we just did what people told us to do. But now... these tests... these are not life or death (we hope) and it becomes that much harder to watch your baby be in pain and to know that she is scared out of her mind while she is on that flouroscopy table. But just like everything else in her life... we ARE doing what is best for her. I know that. I know that more than anything and I just have to keep telling myself I am not doing these things TO her... I am doing them FOR her. There is a difference.

Of course in the middle of all this I have spent many long nights awake and cleaning up puke and researching and praying. Now I am starting to feel the effects of not sleeping properly... I am SICKER than a dog... I am sure I look like I have been to hell and back. My head feels like its going to explode and I am pretty sure I have bronchitis. Great way to start wedding season. So... if you are praying tonight... pray for recovery and health for me in my body, mind and soul. Pray that Kyleigh will not fear these tests and that she will be able to face them as the same brave girl she always has been. Pray for peace and comfort for her. Most of all pray that we find the answers we are looking for... sooner rather than later and that the solution is simple and not another life altering blow. I don't know how many more of those we can handle.