One year later.......

Yesterday was a very busy day for all of us. We traveled to Cincy for a Heart Center Family Advisory Board meeting and were able to take dinner to two families in the Colorectal Center. It was a great way to spend the evening and to realize how truly grateful we are that this year WE were the one bringing dinner instead of receiving it.

Last year was a very different experience. One year ago yesterday Kyleigh had her open heart surgery with Dr. Eghtesady in Cincy. One year ago TODAY was the worst day of my life. Plain and simple. February 28th was the day that Kyleigh spent seizing and we held her down for almost 8 hours to keep her from pulling her lines. It was also the day that I changed everything I knew about being a mom to a sick child. I vowed to myself that I would never again allow Kyleigh to hurt like that.. that I would never again be afraid to ask questions or demand attention be given to her. It was one of only a handful of days when I wondered if we would actually bring our daughter home or if we would bury her.

I felt is it was truly appropriate to share the evening with nurses who had taken care of us a year ago and with a group of parents who applauded when we proudly announced that it was the one year anniversary of her surgery. We walked down the same hallways and rode the same elevators that we did last year and we did it with a smile and with many thank in our hearts. One year later we were not scared, or stressed or anything like that. We were very much at peace roaming the halls.

Kyleigh will have her one year checkup with her cardiologist sometime int he next two weeks. She will inevitably have an echo to check up on her repair and I truly hope that everything looks fine. But we will once again hold our breath.

I wasn't emotional about the whole thing yesterday but today its hit me a little harder. Maybe because my heart still remember the pain of that day more than my head... or maybe its because the day after surgery was actually as bad or worse than the surgery day itself. Its only noon and I have already found myself in tears a few times today over nothing... just watching her play and realizing how lucky we are to have her here and "well"...

I promised myself that I would take some pics of Ky today ... I want to send them to her docs and nurses in the CICU so they can see that what they do is truly amazing...

The Chosen Mothers...

The Chosen Mothers
by Erma Bombeck


Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for progagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.......

"Armstrong, Beth, son, patron saint Matthew"
Forrest, Marjorie, daughter, patron saint Cecilia"
Rutledge, Carrie, twins, partron saint Greard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel, "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is the woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice....and allow her to rise above them."

"And what about her patron saint" asks the angel, his pen poised in mid-air. God smiles and says..."A mirror will suffice."

The lost boys....

Sometimes I feel like Owen and Ross are the lost boys. The other day I had someone who was totally shocked that I had OTHER kids... they thought Ky was our only one. It made me think about how everyone hears so much about Ky that the boys fall into the background. I wish they did not but sometimes its unavoidable. Owen has been spending the night with Meha (troy's mom) and Sabrina (troy's sister) for two nights and yesterday was a crazy morning here but today I think about how by fall my house will be a lot quieter without Owen around all the time. I also thought about how I only have a few more months with him being my baby that I can see anytime I want! He is a big boy and getting ready to head off to school!!!

Funny story: Today Ross brought his trick or treat bag downstairs (have no idea where he found it!) and said... "Mom we need to go shopping at all the people's houses for candy... Roscoe needs candy!"....

I about died laughing! He was talking about trick or treating.... funny how much they remember. I have been able to fool myself into thinking that it was okay to spend so much time away from the boys because "they will never remember"... this proves to me that I am wrong. As funny as it was it made me sad... because that was probably the last thing he remembers as a happy family time together.

Its WORKING!!!!!!!!!!!!!!!!!

OMG... the Ditropan is working! Ky had two Dry diapers!!!!!!! I am absolutely floored! Dr. Alam's nurse emailed yesterday to say that Ky's 24 hour urine output was high for her age and weight and that they would want to closely monitor that for a while. I asked her what that meant in terms of Kyleigh's human dynamic and she really skirted around the issue saying that it was just a snapshot in time and that they would probably want to continue getting these snapshots throughout the next year or so.

So... I need to go do some research on what this could mean since she didn't offer.

And here's the thing. People seem to ask me- why does it matter. BECAUSE it matters to me. Is it so wrong to want to KNOW what is wrong with your child. I need to know... I need to find out what is going on and if / how we can help it. I know that I can never fix this but we can always work on making it better.

I will NEVER stop trying to make my daughter feel better. I will NEVER stop hoping that there will come along some procedure or cure or "fix" for all her ailments. I will NEVER stop looking for answers. That is who I am... and I cannot change that. But I cannot find the answer... when I don't know the question. It is only wise of us to be well informed and currently I feel like we are again floundering .... we need a plan here people!

Bet you never used your softbox like this!!

To all my photog friends... I bet you have never used your softbox to read xrays!!! LOL

I have to give credit to Joe on that one... I was going to drop the xray to him and then he asked... "Don't you have a lightbox or something?"... I mean what does he think I am ? A photographer or something?

Check it out! I think I am pretty darn cool!

Can it be??? Is it Possible?

OMG... we are TWO days into the new cathing routine and Ditropan in the CATH instead of by mouth (errr.... tube) and I swear... if I did not know better... I would think that she is already showing signs of improvement!!! Maybe its just me hoping beyond hope that this is our answer but this morning I cathed 159CC!!!!!!!!!!!!! OMG... that is amazing - normally in the AM I am getting 5-20 cc at most! THEN at lunch... 80 CC.... and her diaper was nearly DRY... That is exactly what we are trying to do! Get her bladder to relax enough to be DRY between cathings... I just cannot believe that it already seems to be working out better! AND ( I know this is TMI for some) but her poo was brown today!! Not black tarry old poo..........!!!!!!!!!!!!!! Just so all of you know... black poo... in a kid with IA.. is not good... its old poo which means constipation which is NOT GOOD... so seeing something other than that rocks my world!!!

So everyone do a little pee and poo dance for us today!

My love affair with Panera.........

In the words of the ever famous Jen Hillenga "I'm having a torrid love affair with Panera souffles!!!"..... D@mn you Kimberly Smoot for getting addicted to these stupid things! And ANY time you go to Panera on the weekend they NEVER have the ones you want! But I cannot complain because in Springfield they never have ANY !! LOL

So... my recommendation of the day is go to Panera and have yourself a Four Cheese or Spinach and Bacon souffle! They will rock your world! But be careful- they are totally addicting!!!!!

On to more serious things... we finished the weekend of being foley cathed. It really was NOT that bad! We had to leave Ky with my parents because we had a small wedding to shoot on Saturday and they did great! They even figured out the feeding pump! After talking with the Urology nurse Debbie, who is fabulous btw, we all agree that Troy and I are going to HAVE to find 2 people (other than my parents) who can cath Ky and watch her. We have been going at this for nearly two years and while we have great help for the boys with both sets of parents, we have NO relief for Kyleigh. Today I am going to start investigating getting a weekend nurse to watch Ky and I have to hurry because I will go into wedding season and not have a minute to breathe in less than two months!!!! And I KNOW how things go in the medical world!

We will email our results to Dr. Alam today and see what he has to say after looking at her scans more in depth. As with everything there are "issues" with the new prescriptions that he wrote. For some reason its REALLY hard for UK Pharmacy to fill scripts from docs in Cincy... For the love of God I KNOW that we cannot be the ONLY kid who goes to Cincy and goes HOME to get their scripts filled!!!!!!! So I have to call today and get that straightened out.

And I KNOW that we have an appointment with Joe sometimes soon to change her button (shudder) but its not on my calendar so I will have to call his office and wait on the phone for an hour there trying to figure out when the appt is!

So... that will be my life today. Trying to play catch up on Kyleigh and the Studio and everything else!

Visited Dr. Alam today... (urology)

Sigh... I don't know exactly what we accomplished. We were in Cincy from 7 am - 5 pm and MAN that was a long day. Ky was cranky and pissed off... with good reason. Our main issue is that the Ditropan we are giving her to protect her kidneys and keep her bladder from having so many spasms (when she reaches 30 ml of retention she has immediately starts having "pretty hard" contractions) is probably also adding to the colon issue. At the very least it is NOT making it any better. The good news is that her kidneys have not gotten any worse. Dr. Alam had not had a chance to look over the scans completely so he did not have a full assessment. We decided to try and do the Ditropan through the cath and straight into the bladder and hope that effects less of her system than by mouth. She is also on a Foley cath this weekend to get an accurate urine production count. We just want to see exactly how much she is making....

Dr. Alam could tell that we were VERY frustrated with the whole urology thing. I don't know that I am so frustrated with the urology but with the fact that this "thing" this VACTERLS thing continues to drag on and on... and on......................... and ONNNNNNNN..... Every time we finish up another part like the colostomy we continue thinking that we will feel some kind of relief from this overwhelming sense of "drowning" but all too soon it is filled back up with something else that promises to be more frustrating and longer lasting that the last issue. That is what brings on the hopeless feelings. The knowledge that no matter how hard we try, or what we do, or where we go, or who we talk to... there will always be something else ... waiting around the corner and ready to strike and cause yet another disaster of which we will have to deal with the fallout for years to come. Dr. Alam even told us today that EVENTUALLY it will get easier. Maybe never better.. but easier to deal with ... and that someday is probably not coming anytime soon... it may be years. GREAT. (((((((Sigh)))))))

At this point. I swear... I think we are canceling the neurosurgery altogether. I have now talked with exactly 5 neurosurgeons and fired two before i even met them. I think that maybe this whole surgery is just not right for her. Seems that every time we try to FIX something we just make something else worse. The neurosurgery scares the crap out of me. I always knew that if her heart were to get "messed up" that would be the end... but this neurosurgery... one wrong move and she is in a wheelchair and I am wiping up drool for the rest of our lives. That is a thought that I cannot handle. As a mom who only wants her princess to grow up happy and healthy and enjoy life... It make me instantly have a panic attack. Instantly I feel as if I could loose my lunch and pee myself all at the same time. I watch her walk and talk... she babbles and is trying to READ books all by herself. What if, in one single surgery, all that is taken from us? Would it not be better to wait and let it happen slowly... if ever..... (((((((Sigh)))))))

I have already bought "the neurosurgery dress" but I can return it. Or I can turn it into a 1st / 2nd birthday dress... it will still fit her then I believe. Maybe this is just a knee jerk reaction but SOMETHING still does not feel right about this surgery. Maybe its just the timing... maybe she really doesn't NEED it. I mean everyone we talked to said... in any other kid they would recommend no surgery. But for Kyleigh............. I am SO sick of hearing that. I would like for ONCE for my child to just follow the rules. I would like for once for something to be set in stone and actually work out the way we plan. I would like for ONCE to NOT have to make the decision ... I would like for someone else to tell me what to do.... and I promise I would gladly do it. (((((((Sigh)))))))

Tonight I sit here and my head is just reeling and the only thing I can do is sigh............ I wonder if it ever gets any easier and the sad fact is that I know the answer.... deep down I continue to hope but each day it gets a little less and a little quieter in my heart and mind... each day is one day closer to having to face the fact that this will never be over. How do you do that? How do you accept that and come to terms?... if anyone knows... please share.

We made it home!!

Holy WOW... what a week. We made it through the most intense photography conference that we have ever had the privilege of attending! Conventions are always FUN but rarely are they this intense and packed with SO many amazing speakers! Our heads are literally reeling from all the information and inspiration. This particular one had soooo many speakers that were geared toward weddings that we HAD to go to them all! That meant 10 hour days in class!!! YIKES! We will not even mention that we stayed up every night until 3-5 am and were back up for class around 9 am... very little sleep was happening... but that's okay!

Most of all, this week was an amazing time to renew ourselves... Emotionally, physically, spiritually, and in every other way possible this past year was completely and totally draining. Its amazing to me that 7 short days in a warm place with a full time babysitter and your nearest and dearest friends around you can bring you such total and complete relief. That is what I feel right now. That 10K lb weight that I have so often felt like I was carrying has been greatly reduced and I am so glad that we made the time to get away. It would have been really EASY to stay here in Kentucky and keep trudging through it all but this is what NEEDED more than anything.

We had an absolute BLAST singing Karoke with some of our best friends in the entire world. I do have to note that the week was NOT quite complete without my BEST friend in the universe... Kimberly... she was being a brat and decided not to come. Hmph... still pissed about that seeing at the rest of the "sister studios" were in attendance! I just have to tell you... Photographers... can be WILD.. and who knew that Karoke could be such an entertaining experience. It was some wild fun times! And as they say... "Photographers have more evidence!".... there is a pretty great You-tube video of Troy singing "Baby Got Back".... anyone who wants to see it can email me... it shall not surface to the general public as the faces cannot be changed to protect the innocent! ROFLMAO. schmidt.amber@kentuckystudio.com

The week went rather smoothly for Kyleigh. Kyleigh and Troy's mom had a great deal of time to bond and that is a very good thing! Because of all her medical issues there are members of our family who have never even MET Ky... that makes me kind of sad. So as she gets healthier and easier to care for we are hoping to be able to let her get out and about and meet the fam!!

On the Kyleigh front... there are updates. She is fighting the crud. I am kind of pissed too because she was fine until we left KY. Everyone at convention had the crud by day three and I think our hotel was infested with mold (well no... I KNOW it was)... there was no vent in the bathroom and everything in the room clothes, blankets etc... felt totally DAMP all the time. So I mostly feel like its our fault that she is SICK... I am not DEALING well with that seeing as how I have been really proud of the fact that... other than her surgeries... the kid has NEVER really been sick! I guess it had to happen sometime though. I freaked out on Sunday because I saw what I thought was PUSS around her gtube site. Of course Joe had to get the infamous email with pictures... I am sure he wonders why it is that our kid can never have something go wrong Monday- Friday... its always on the weekend! Either way Joe said it was just granulation tissue and that some steroid cream should take care of it. Thank goodness because I was NOT about to be happy about it being some big ordeal! LOL I am about done with the "ordeals"!

A good note... the WIC went through and her formula is covered! They wouldn't cover it all but most of it and the remaining portion will be picked up by her third party insurance!!!!!!!!! Thank is a huge relief!

We will go back for more renal profiles on Friday... we will also see Dr. Alam. Hopefully we can get a new game plan about this urology situation. I just feel like we need a new plan... some kind of modification. This is just not working.......... so I hope he has some more answers for us.

We're in Orlando!!!!!

Who's in the picture? From the left - Back row: Julie (my amazing friend who flew from Utah to take care of the boys during Ky's open heart surgery) Troy, The amazing DJ, ME, Heather Front Row: Andree, Suzy (my sistah from another mistah and drinking buddy!), Tenille, and Sarah (the amazing one who photographed Ky in IL back in October).

Well we made it! We are here in Orlando for a photography convention. Its 5 days of speakers and classes and FRIENDS. In the photography world, we are much like a family. Getting the opportunity to come to Orlando and spend 5 days learning and refreshing myself as an artist, and as a business person. Yesterday morning I was so privileged to spend four hours with one of my idols... David Jay. Check out his work at www.davidjay.com

I just have to say a quick note about DJ... he was possibly the most gracious, eloquent and inspiring photographer that I have ever met. I truly wish that he had had more time to hang around longer but alas he was in demand, as I am sure he always is, for a wedding this weekend.

I was so incredibly excited to meet him and get to learn under him. DJ is an amazing photographer, business person, and generally a spectacular human being. Listening to him speak... I sat in awe of how inspired and refreshed I feel. He is living the life that WE want to live... he still truly enjoys his art and his life and I know that we can too! I have been DJ's biggest fan for a while now... love every product that he has ever recommended and I finally, after listening to him speak, understand why. I truly desire to LIVE. I do NOT want to be tethered to my business. I do NOT want to burn out and I want to LOVE what I do. I also realize that I must be inspired and enjoy what I doing to be able to produce the amazing images that my clients are used to!! I am so incredibly grateful to DJ for renewing and reinforcing all those things I KNOW are true. I am forever changed .... I cannot wait to go back home and live the freestyle life!

And since we are talking about him... I mean heck... he's not bad on the eyes either! ROFL

I am savoring every moment of convention and am having a blast! Today Ky allowed a few people to snap some quick pics too.... so here she is in all her glory! These were taken by Leah Martin. She is another photog friend!! I am hoping that tomorrow or the next day Ky will let Sarah do some more pics... she has a few other outfits ( and amazingly cute one that Heather (in the pic above) made her ) that I would like to have photos of!!

Reverse gastric bypass

Yes such a procedure exists and now something we may have to consider for Kyleigh. Basically you wrap the intestines around the top of the stomach to keep you for ever throwing up no matter how much you eat.

So yes more throwing up. But why and what exactly are we doing?

What we basically have to do is two fold. 1. We have to pressurize her stomach with enteral feeds (right now elemental formula) to make her 12 month size stomach reach a size 19 month that she is now. 2. We have to keep medicined long enough to allow her intestines to equal in size since the not moving portion is larger in diameter than the normal moving portion so it tends to form a dam of food in there.

The problem is with the amount of Exlax she is on to keep her elemental feeds progressing it keeps normal food moving too fast thru her small intestine to be dissolved and broken down. So basically whatever real food she eats passes straight to the bad part of the colon. And depending on its shape and consistency forms a dam. Which causes her to back up and blow. The good thing is that no matter how fast the Exlax the elemental is absorbed in the small intestine like it should.

So right now it is back to Pedialyte for two days. Then back on elemental foods to the 200ml five times a day. And the ONLY thing she can eat on top of that is Cherrios. Then after a couple days maybe some graham crackers. Beyond that only food that can be completely broken down by stomach juices and small intestine on speed. And yes for all you OT people out there she is taking suckers to keep the things in mouth good when she can't eat.

Just figured I would explain what the routine is and why puking is such a normal thing during this process. All this is to save the colon and prevent another operation. Especially when we have the GTube Mickey to fall back on.

More puke..........

This time it was REALLY bad. It came out like a rushing wave... i am NOT a weak stomach type of person but this one almost got me. It smelled horrid... how can something that stays down less than 10 minutes come back up smelling so bad???

Ugh... so I had to break down and call Joe. Poor Joe... not even in the city and answering my stupid phone calls in the AIRPORT... I am all but convinced that the man is near sainthood. (and I am sure if Susan is reading this she is about to fall out of her chair laughing...) He even said... "wow I was just thinking... I haven't heard from Amber in a while..." Lets put that statement into perspective... we haven't talked to Joe in ummmmm 4 days. But we did email on Friday about the WIC letter...

So now... on top of having to travel 13 hour in a car with Ky... we have special considerations on her GUT issues........................................................................

Do I ever get tired of being RIGHT???

YES.... abso frickin lutely... Friday night Troy decided it would be a good idea to allow Ky to eat Mac n cheese... KNOWING that she has puked it back up every time she has eaten it in the past two months. I told him... well BEGGED him really ... to take it away. Ky loves it but it hurts her so much that sometimes as parents we have to be SMARTER than an 18 month old. Nope... not only did he allow her to eat it but he gave her a SECOND helping. ARGHHHHHHHHHHH... I hope you can hear me scream all the way over in Australia Brigette... cuz I am screaming at the top of my lungs. Low and behold... 18 hours later... PUKE. now... the thing that scares me is that I have no seen the mac n cheese come back out... either up or down. So where is it? Hanging out in there? And to top it all off her belly is blown up again. I knew we wouldn't be able to get out of town without something happening. I feel like I should call someone and get a KUB to make sure she is not backed up. And here we go... whose job is it to order the KUB? Megan- the general ped?, Flomenhoft- the GI?, I know its not Joe's job but of course he is the one I can get in touch with the easiest. I hate to friggin bother him.... its like EVERY monday morning there is some Schmidt Family disaster. I know he has to be tired of it. I myself and TIRED of it! I feel completely guilty emailing him all the flippin time.

And Tara... I was right about you too... taken the D@mn enema and be done with it or sit over there and shut up!!! BTW... my sister is backed up too. We are just a whole huge constipated family.............. I give up.

I will say that is one thing that Cincy has going for them... not only does Levitt operate but they are MORE than willing to do the follow up care. I think that is what makes the Colorectal center so different.

I just get tired of being right... I get tired of people NOT listening to me. I get tired of FIGHTING with people to get them to listen to me. And really I am just cheesed off today. Another day and more crap to deal with.

How bout them Giants??!!!

Giants - 17
Patriots - 14

Need I say more? I am not a huge NFL fan but I LOVE the Superbowl! We watch it every single year! I called this one!! I had been rooting for the Giants... maybe I just like the underdogs but either way ............... G O G I A N T S!!!!!!!!!! I have to say I was unimpressed with the halftime show though... but wow... it was a helluva game! They are calling it the greatest update in Superbowl history!!

Read the whole story on ESPN

Its the little things in life................

I am working on a project with Dr. Y (his link is to the left) --------->

He was going to stop by the studio yesterday and drop off a CD with a bunch of images on it and I get a text message that says: "want starbucks?" Well yeah!!!!!! That is like asking a woman if she wants chocolate!!! LOL So I texted him back the name of what I drink. I warned him that it was long and of course he calls me when he standing there ordering it because its pretty much a hilarious thing to try and order!!!!!!!!!!!!!!!!!!!!!!!!! And OMG he got it right!! I sat in my studio for the rest of the evening drinking my Starbucks and being pretty darn happy!!! Yum!!

So... what is this insanely complicated and amazingly heavenly drink?

Grande Two Pump Toffee Nut Vanilla Bean Blended Creme Frapuccino!!!!!

You have GOT to try it sometime soon! Its heaven in a cup! I just had to tell that story because it made my day. After the fiasco of the morning I needed something good in my life! LOL

On another note... Joe came through for us YET again. He got that letter written and I sent it to the WIC people today. I don't know if they can get it done by Tuesday but I will cross my fingers............. so anyone out there... PRAY that the WIC office gets in a hurry on Monday!!!!