Schmidt Family blog » Medical Awareness http://family.kentuckystudio.com Just another WordPress weblog Thu, 26 Aug 2010 15:03:11 +0000 en hourly 1 http://wordpress.org/?v=3.0.1 Be Still… http://family.kentuckystudio.com/2010/08/26/be-still-2/ http://family.kentuckystudio.com/2010/08/26/be-still-2/#comments Thu, 26 Aug 2010 15:03:11 +0000 Amber http://family.kentuckystudio.com/?p=11896 I have been nearly silent on this blog for a good while now.  For a great many reasons I felt the need to just “be still”.  Mostly because in my prayers to my Heavenly Father I felt Him telling me to be quiet, be still, just wait on HIM.  So i did.  I stopped talking. writing, blogging, searching, emailing, calling, driving, crying, seeking, hoping, pushing, believing… I just stopped.  I just needed some peace and quiet.  I needed some time to remember who I was and what this was all about.

Yes, I know that the mind wanders to the relationship with my husband and I.  Although it has previously been strained… we are good right now.  We are in a good place with a healthy amount of talking, loving, hugging, fighting, debating, forgiving, etc.  All those good things that marriage truly mean… yeah we are all those things now.  Which makes me happy and a bit more calm than before.  Is life perfect?  NOT!  Whose life is perfect?  And if your life IS perfect, I don’t want to know!  Seriously.  I am a little bitter.  I don’t want to know about your perfect house and perfect dog and perfect kid and perfect clothes… I don’t care.  (PS… that was not directed at anyone in particular… just the perfect people ;) LOL)

At any rate I have been very torn about Kyleigh’s health.  She does wonderfully for a while and then she crashes and goes into all sorts of crazy things that make us ask questions we shouldn’t have to ask.  She has been on a good stint lately though.  We have been debating about how to handle her Urology needs for a while now.  We go to her doc and we just walk away feeling empty, confused, scared and frustrated.  There are NO OTHER docs that we see that make us feel this way.  Even with all the HARD things that we have had to hear from so many of our docs we still can only remember a handful of times when we felt this way.  We continue to go around about this doc and his place in our life and in our child’s and we just cannot, in good faith, see him being a major part of it much longer.  At some point we have to fight for her “life” sans daily medical madness…. KWIM?  Just some peace and normal… and shopping!  Yes… my daughter is a shopper and I love it!  I will shop til I drop with her.  It really is bad though.  So bad it’s good :)   I am just so glad that I get to take her to pick out princess dresses and new shoes and tutus and all that fun stuff!  I am glad that she has a fit in the middle of the store because I won’t buy her M&M’s and then by the time I get to the checkout I feel so bad about depriving her of the only calories she might want to consume that day that I buy them anyhow.  I try and make it into a lecture that makes it LOOK like I am in control but it’s pretty obvious that she rules the roost.  We own that… it’s okay!

So in this time of being still… I have been SOOO busy.  Not much “STILL”  has been happening here in our house as there is always a ton to do, but enough “busy”ness that my mind was still which I guess is the point.  Anyway… I laid down the torch on the medical end of things and just waited.  I had been looking into a few options for Urology and found some promising new procedures and perspectives and then it happened.  Yesterday I opened a piece of junk mail from UK just to see if there was a blurb about the Makenna David ER (obviously close to my heart) and there it was.  Or should I say HE was.

Dr. Ali Mahmoud Ziada.  I already have his name memorized!  He is the NEW pediatric Urologist at Kentucky Children’s.  Yes… so he may just be one of MANY specialists but we have been waiting a LONG time for this day.  4 years to be exact!  I am so proud of our little hospital and so glad to be a part of watching it grow and change.  I am also very relieved that we have new hope for a doc to man the trenches of Ky’s Urological health here in Kentucky.  I don’t anticipate that he will be the savior of my daughter’s bladder but I am truly hopeful that this will be the start of a long, healthy, beautifully communicating relationship with him.  I am very tired of looking for someone to trust.  I know that the docs she sees now are great, excellent even but how can I, in good faith, hand her over to someone that I just don’t feel RIGHT about?  I can’t.  That is the simple answer.  I knew that.  So we waited.

Our wait is over on August 31.  I feel a bit like I am “cheating” on the Cincy docs but oh well.  When it comes to your child… I cannot help what everyone else thinks or feels about them.  I can only do what I know is right and trust that I have someone bigger than ME in control!  August we will meet this new doc and I am so excited.  It always brings a bit of trepidation though… the “what if’s” seems to come barreling at you like flies splattering on your windshield… you don’t see them coming until they are already a mess on the window!  I am torn as to whether to try and track down all the medical records or whether I just want to let this person do their OWN evaluation and go from there.  It is time for her bi-annual VCUG etc so its not like I would be torturing her for no reason.  Who knows… so much excitement and fear at the same time… it’s all very scary yet familiar.Recent Comments:

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  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

]]> http://family.kentuckystudio.com/2010/08/26/be-still-2/feed/ 1 One Day closer… http://family.kentuckystudio.com/2009/12/15/one-day-closer/ http://family.kentuckystudio.com/2009/12/15/one-day-closer/#comments Wed, 16 Dec 2009 04:42:28 +0000 Amber http://family.kentuckystudio.com/?p=11713 I was standing at the bus stop discussing the latest Walgreen’s deals with our next door neighbor and I told her that there was a huge Huggies deal and I was SO excited because I was able to stock about 25 packs (enough for roughly 6 mo of Kyleighness) for less than $150!  Now, this was not actually my neighbor but the person who babysits her kids and we talk on occasion.  She said to me, with a little bit of snittyness I might add, “Are pull-ups included because he doesn’t wear diapers anymore”.  I am sure she was just proud that he had potty trained but I know there was an undertone of “What’s wrong with Ky that you aren’t trying to potty train her?”

Our neighbor’s child is a full year younger than Ky.  He is still very baby like in his actions and speech.  He is cute as a button but still very much a baby.  When I look at Ky now… she is not.  She will be FOUR this coming year.  She speaks in sentences and ponders life.  She orders her brothers around and demands explanations.  She can be reasoned with although at times she is, like every 3.5 year old, unreasonable.  She is smarter than most, I would venture to guess.  I choose to see my daughter, not as the child who cannot be continent, cannot hold her own stool, has the inability to keep herself hydrated, or consume enough calories to live.  I see her as this amazing miracle.  This beautiful person who we have fought so hard for.  I rarely think about things that WERE without also seeing how wonderful and miraculous those times were.  So even in looking at the “horror” of her life I see beauty, wisdom, grace and miraculous things.

But that single comment and the tone with which it was said was like a dagger.  It hit me without me even seeing it coming.  I had no idea what to do with it once I did see it.  It wounded me.  I realized… that day was one day closer.  To Kyleigh realizing…. that she is not normal.  What will I do when that day comes?  How do I explain to her the reasons why she cannot wear those big girl Ariel panties that she loves so much.  Instantly this glass house that I have created around her illness, that it is positive and good things have come from it and we have been shown miracles and and and…….. it all came crashing down.  How can I ever explain this to her and make it positive?  I can’t.  There is nothing positive about it.  There is no hope for a cure, no meds to coincide, no treatment plan that we haven’t already tried, no surgery that will help, no doctors to consult… I have nothing to give her.  I have nowhere to go and no one to seek help from.  That hurts.  A lot.

Just today, Ky had her morning poop.  Yes… she usually has one a day, unless her meds are off or she is sick… in the late morning.  (these are all things that are very commonplace to talk about in a family with an IA kid… I apologize if they are TMI for you…)  I went to reach for the wipes on the changing table and of course… nada… I go to the armoire… none there either.  I try and send Ross for a new box… hah!  Yeah right.  I really miss my Owen to grab things for me in a pinch situation.  So I left her laying there, half covered in poo (you IA moms KNOW what I am saying here!) and went running to the stockpile room to retrieve new wipes.  I came back and Kyleigh was sitting in the crab position on all fours trying not to put her bum down and get the changing table cover messy yet she was covered… she had poo from end to end and in the course of her panic had peed all over everything.  I could see it in her face… the look of panic.  She had NO idea what had just happened that she peed on herself and her own changing pad.  She was upset and in a way scared because she did not understand it all.  I was upset because I have no conception of how to try and explain.  We both cried.

As I put her in the bathtub I kept thinking… its becoming so painfully apparent now that she is not normal.  Soon she is going to know too and all of the “shadow of doubt” or hope or whatever you want to call it will be shattered.  Right now, Kyleigh believes that she is perfect… and to me she is, but how do you explain to her that she is not perfect in the “eyes” of the rest of the world… and that this problem, this issue, is somehow abnormal.  I worry about people and their painful glances as they realize that an almost 4 year old still wears diapers.  I think about words that are unintentional and just as painful nonetheless.  I am NOT prepared.  I am not prepared to hold my daughter at night when she cries because she wants to be like the other little girls at school.  I am not prepared to watch her run from the school and tell me about kids who said hurtful things.  I am not prepared to try and explain to people in the outside world what is “Wrong” with Kyleigh without also horrifying them.  (because up until now our world has consisted of 90% medical people and they all at least understand the physiology of it all)  I am not ready to accept that this is how it has to be for her.  The surgeries, the hospitals, the years, the meds, the long hours, the monitors, the pumps, the research, the tests, the doctors, the appointments, the traveling… I can do that.  Those things are things I know.  Those things I am ready for.  Another doctor, another hospital, another diagnosis… I can handle that.  This… I cannot.

To be honest with you, there is nothing in the world that has ever SCARED me about this child and I have finally found the one thing.  I find myself aching and paralyzed with fear at this moment that we are one day closer to THAT DAY when she realizes that she is not like everyone else.Recent Comments:

  • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

]]> http://family.kentuckystudio.com/2009/12/15/one-day-closer/feed/ 7 September 14-20 is Invisible Illness Week.- Amber’s Version http://family.kentuckystudio.com/2009/09/18/september-14-20-is-invisible-illness-week-ambers-version/ http://family.kentuckystudio.com/2009/09/18/september-14-20-is-invisible-illness-week-ambers-version/#comments Fri, 18 Sep 2009 13:31:20 +0000 Amber http://family.kentuckystudio.com/?p=11490 So many people struggle daily with illnesses that alter their lives yet because you cannot SEE them they go right on through life with everyone expecting them to be “normal”.  My illness is literally “all in my head” and throughout the Chiari community you will find that the number one sentiment is frustration due to lack of understanding!  Our families often don’t understand, our doctors, only other patients truly “get it”.  It can be a very isolating thing to have pain that you cannot get rid of and be expected to function like everything is totally fine when its not.  What most don’t understand is that just because I am “functioning” does not mean that I am feel good.  About two weeks into this whole ordeal I was still feeling awful… I woke up one morning and said to myself “Look… you CANNOT lay in bed the rest of your life.  You have a life, kids, a house, a business… you are going to have to learn to deal with this pain and fatigue.  So get your BUTT up and DO IT.”  So I did and I DO every single day.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

My Invisible Illness:

Arnold Chiari Malformation : Also known as ACM1. I have a 10 mm herniation of my cerebellum.  It is crowding my spinal cord and causing a blockage of flow of spinal fluid which causes me to have headaches that cannot be touched with ANY prescription drugs- even narcotics.  It causes a battery of other symptoms like: ringing in the ears- sometimes my ears ring so loudly I cannot even hear, hearing loss- I have significant hearing loss in my left ear, debilitating headaches, body aches, nerve pain all over, balance issues/dizziness (I cannot even count the number of times I have fallen in the shower.. i have a bruise regularly from it), I have a completely ABSENT gag reflex which every nurse who has ever swabbed me for strep has commented on- which is also the reason why I rarely vomit, tension and pain my neck, shoulders and back, FATIGUE (sometimes its all I can do to put one foot in front of the other), visual disturbances (I regularly see white spots all over my field of vision), tingling / numbness in the limbs(mine is especially bad in my lower legs, feet and hands, memory loss, intolerance to loud noise and bright lights (the light over my kitchen table nearly sends me into the fetal position… it literally hurts me.), decreased sensitivity in the extremities (my neuro was poking my right hand with a needle and I HONESTLY couldn’t tell… now he poked the left side and OUCH!!), pain in the ears, jawline, teeth, poor circulation, hand tremors, nausea, sinus / mucous issues…. the list goes on but those are my most prominent issues.

Temporal Lobe Epilepsy - I am having frequent, unprovoked seizure in my temporal lobe occurring every 2-3 minutes and lasting up to a minute in during.  These are absence seizures which make me stutter, have memory loss, drop and mix up words, stop talking in the middle of a sentence, loose my train of thought, cause headaches, fatigue, nausea, etc.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chiari 1 Malformation (also known as ACM1) and temporal lobe epilepsy.


2. I was diagnosed with it in the year: 2009


3. But I had symptoms since: I was in high school.  I passed out in English class, nearly fell down the stairs, and passed out while driving and drove through someone’s front yard.  I was checked for cardiac stuff but NEVER for Neuro and was declared to have Random Syncope due to dehydration and was told to “drink more water”.


4. The biggest adjustment I’ve had to make is: not being able to push myself like I used to.  It used to be that I could stay up all night proofing or getting something done.  Now I am MUST pace myself because over doing makes all of my symptoms worse.  Also the lack of consistent sleep is really getting to me.  I am the person who NEEDS 8 hours to function and I am lucky if I get 2-3 at a time now.


5. Most people assume: one of two things a) there is nothing “wrong” with me other than I need to loose some weight or b) they are surprised to see I am not dead yet… Yes.. this is a major brain issue which will require a MAJOR brain surgery but its not going to kill me.  I am determined.  I know that it HAS taken many lives but it will NOT take mine.


6. The hardest part about mornings are: waking up.  Its hard to get out of bed when you tossed and turned all night.  Most mornings before I get my meds in, I am REALLY feeling bad, aching, tired, hurting all over, balance is bad… I fall into the wall most mornings just trying to make it to the bathroom.


7. My favorite medical TV show is: Grey’s Anatomy or House.  The new show Mercy also looks very promising!


8. A gadget I couldn’t live without is: my pill sorter.  Yes I feel kind of like a grandma but when I have so many pills to take at different times of the day and memory issues… its a life saver!


9. The hardest part about nights are: the tossing and turning.  Some nights I wake up choking so hard I see stars.


10. Each day I take: Some form of pain reliever (ranges from narcotic to a simple tylenol 800), Naproxen Sodium (anti-inflammatory), Seizure meds ( I have been through a couple different ones already… the first one- Topamax had AWFUL side effects… the Lamictal I am now is WAY less “side effecty” but messes with my sleep in a MAJOR way, and I am hoping to look into something like Lasix… I am hearing that for some people it helps to relieve the pressure from fluid build up.  I am also going to look into some vitamin supplements.. I truly think that those help also!  I need to see my cardiologist because my PVC’s are back with a vengeance.  I may need to go back on my beta-blocker.  I am sure this is just the start of meds because the only choice other than surgery is a whole LOAD of meds.


11. Regarding alternative treatments I: would consider it if it meant that I might be able to forgo surgery but overall I have a LOT of faith in the medical community.  I just need to find the RIGHT Neuro.


12. If I had to choose between an invisible illness or visible I would choose: tough to say.  This is what I have been given so I deal with it like it is.


13. Regarding working and career: I am trying my best to continue on.  I have made the decision to close down my business to nothing but weddings because I truly do enjoy them.  I may need to cut back on weddings as they are very strenuous, long days and they put a lot of stress on the body but for now I will take my meds and keep on.  A little slower pace than I would like, but still moving nonetheless.  I dread ever being labeled “disabled” and pray that my illness never gets to that point.


14. People would be surprised to know: how scared of this I really am.  It sucks to think that your brain is being taken from you.  I feel so much pressure from being a mother, wife, photographer and I cannot even begin to think of the “what ifs” because it nearly sends me into a panic attack.


15. The hardest thing to accept about my new reality has been: is that most people really don’t understand.  Even the compassionate ones.  I am always thankful for their kind words and prayers but it is a very lonely feeling.


16. Something I never thought I could do with my illness that I did was: shoot a wedding.  I honestly was devastated because I thought that this meant my wedding photography career was over.  I found out quickly that I am still just as passionate and creative as always (just at a slower pace now…)


17. The commercials about my illness: there are none.  This is an often mis-diagnosed illness and although it effects almost double the number of people that MS does it has very little recognition.


18. Something I really miss doing since I was diagnosed is: sleeping soundly.


19. It was really hard to have to give up: doing it all.  I am such a micro-manager it has been hard for me to allow others to step in and help.


20. A new hobby I have taken up since my diagnosis is: hobby?  what’s that?


21. If I could have one day of feeling normal again I would: do all the things that are hard for me now.  I would enjoy every single last pain free minute with my husband and kids and enjoy KNOWING that I am not a burden to anyone for just one more day.


22. My illness has taught me: its ok to be weak, to trust in God and lean NOT on my own understanding, to be STILL and know, to SLOW down, to continue researching, to find friends who understand, to be patient… with myself and others.


23. Want to know a secret? One thing people say that gets under my skin is: nothing.  Its when they get that pained look on their face like I am hurting THEM by telling them my diagnosis… look… if you don’t want to know… don’t ask but seriously don’t act like I am a leppar…


24. But I love it when people: say they are praying for me.  I need all the prayers I can get!


25. My [Mommy's] favorite motto, scripture, quote that gets me through tough times is: Job 23:10 10 But he knows the way that I take;
when he has tested me, I will come forth as gold.


26. When someone is diagnosed I’d like to tell them: You are NOT alone.


27. Something that has surprised me about living with an illness is: how amazing PEOPLE are and how many doctors will look at you with an obvious illness and ASK you if you are depressed… SERIOUSLY… yeah… I cannot see straight with a headache because I am DEPRESSED… get real.

28. The nicest thing someone did for me when I wasn’t feeling well was: see the need for our family to get AWAY and worked together with a group of friends to give us the BEST (and only real) family vacation we have ever had!  That was truly one of the best weeks of my life!  I could have stayed there forever and was very sad to see the week go.


29. I’m involved with Invisible Illness Week because: To bring awareness.


30. The fact that you read this list makes me feel: honored that you would take the time to learn a little more about Chiari….

For more information on Chiari Malformation visit:

http://www.chiariinstitute.com/

http://www.conquerchiari.org/

http://www.chiariconnectioninternational.com/

WACMA (World Arnold Chiari Malformation Association)


Recent Comments:

  • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

]]> http://family.kentuckystudio.com/2009/09/18/september-14-20-is-invisible-illness-week-ambers-version/feed/ 4 September 14-20 is Invisible Illness Week.- Kyleigh’s Version http://family.kentuckystudio.com/2009/09/15/september-14-20-is-invisible-illness-week-kyleighs-version/ http://family.kentuckystudio.com/2009/09/15/september-14-20-is-invisible-illness-week-kyleighs-version/#comments Tue, 15 Sep 2009 16:55:47 +0000 Amber http://family.kentuckystudio.com/?p=11480

So many people struggle daily with illnesses that alter their lives yet because you cannot SEE them they go right on through life with everyone expecting them to be “normal”.  Kyleigh is a double edged sword.  While I am so thankful to not have people staring and making fun of her for having outward afflictions it also makes it really hard for people to grasp just how sick she has been and the struggles she faces every single day.  Now, having my own “issue” it makes matter even worse.  Mine is literally “all in my head” and throughout the Chiari community you will find that the number one sentiment is frustration due to lack of understanding!  Our families often don’t understand, our doctors, only other patients truly “get it”.  It can be a very isolating thing to have pain that you cannot get rid of and be expected to function like everything is totally fine when its not.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Kyleigh’s Invisible Illnesses:

VACTERL Association : Vertebrael Anamoly – Tethered Spinal Cord (Filum Terminale), ACM 1 (Chiari Malformation – 5mm herniation), Anal Atresia- Low Imperforate Anus with a Rectovestibular Fistula, Cardiac Anamoly- Congenital Heart Disease – AV Canal with Involved valves, ASD, VSD, Mitral Vavle Regurge, Tracheal Anamoly- Tracheal Bronchus (also known as Bronchus Sooey or Pig Lungs- found only in 5% of humans, makes it extremely hard to intubate without collapsing a lung), Esophageal Anamoly- Major GERD leading to Failure to Thrive, Renal Anamoly – Grade III Reflux in Left Kidney (70% function remains), Duplicated Emptying System with “Y” ureter on the Right (30% function remains), Single Umbilical Artery

Neurogenic Bladder – meaning Kyleigh has less than a 3% chance of urinary continence.

Undiagnosed Autonomic System Disfunction (causes her to have a hard time regulating her own body temperature and means that her body overheats/ become dehydrated EXTREMELY easily).

Intestinal Dysmotility (I have a large part of my colon that randomly dilatates and shuts down my GI system.  When that happens I get dehydrated FAST and need medical attention before I end up on TPN (IV food).)

30 Things About My OR My Child’s Invisible Illness You May Not Know

1. The illness I live with is: VACTERLS (+ some other random issues)


2. I was diagnosed with it in the year: VACTERL: 2006 (at birth), 2007, 2008, 2009 (seems like we find new issues every year)


3. But I had symptoms since: Birth


4. The biggest adjustment I’ve had to make is: getting catheterized every 4 hours.  After two longs years I STILL fight tooth and nail.  Mom and Dad are counting the DAYS until the Mitrofanoff.


5. Most people assume: I am normal and because I have done “ok” for more than 3 months I should be ready to pull out my g-tube and eat like a normal kid… Mom says my feeding tube can come out when I consume more than 200 calories per day by my own mouth.


6. The hardest part about mornings are: that I still cannot control my own bowels and morning usually bring a SUPER poop that floods my clothing, bed linens, etc and is still very much like infant poo.  Liquid in = Liquid out.  Enough said.


7. My favorite medical TV show is: Grey’s Anatomy (ok wait… that is mom’s favorite… )


8. A gadget I couldn’t live without is: My g-tube (mic-key button- feeding tube), and my 12 FR Catheters.  I would literally not be alive with out these things…


9. The hardest part about nights are: Overnight feeds.  I am still on a feeding pump overnight and no matter what Mom and Dad do I still cannot get above 60 ml/ hour or I puke up everything.  Sometimes I still puke regardless.  I have a lot of GI issues


10. Each day I take: Senna (to make my colon move enough to clean out the waste- otherwise I would never poop on my own… I just don’t have that ability), Prevacid (to keep me from puking up my food), Ditropan (for my bladder) liquid + patch (I have maxed out my dose and it still is not doing what it should, Large doses of Tylenol (to control my leg and other pain), Gentimycin Flushes (administered through a catheter into my bladder to keep my bladder from growing bugs and washing them back into my already ailing kidneys).


11. Regarding alternative treatments I: have enough to do with traditional treatments to look into other ones!


12. If I had to choose between an invisible illness or visible I would choose: whatever God gave me.  This is WHO I am and I cannot be anything but that.  Some days we are thankful for the “invisible” and some days it just complicates things.


13. Regarding working and career: I am either aspiring to be a gymnast or a dancer (or a monkey… depending on the day).


14. People would be surprised to know: I have had 15 surgeries throughout my life and spent more than a year’s worth of days in the hospital.  To look at me you would never know.  A lot of people also do not know that my cognitive ability is higher than average.  I have never needed therapies and have always excelled in learning.


15. The hardest thing to accept about my new reality has been: how to handle giving me as “normal” a life as possible also living with the knowledge that at any time one or more parts of me could just randomly shut down.


16. Something I never thought I could do with my illness that I did was: run and jump and have the energy to play with my siblings.  Because my heart was in such bad shape everyone thought that for the rest of my life I would likely be a “heart baby”… I showed them!


17. The commercials about my illness: What commercials?!? No one has heard of ANY of my conditions! My mommy has to teach DOCTORS how to pronounce all of my illnesses, then she has to explain and RE-explain them, then tell them to go look it up… this is statement made by a friend of ours (I ditto the statement!  Most of the time Mommy spend our entire admission educating the “flock” and nurses- unless its at KCH with Joe and then he knows the whole story!)


18. Something I really miss doing since I was diagnosed is: Spending more time outdoors… because of meds and part of my illness I cannot spend a lot of time outside.


19. It was really hard to have to give up: nothing.  Everything I do, I have really done since birth so I don’t know any different.  Mom and Dad would say sleep because of my cathing, meds and overnight feeds!


20. A new hobby I have taken up since my diagnosis is: twisting my mickey button around and around.  Mom gets made because she says that I need to get my dirty fingers off it!


21. If I could have one day of feeling normal again I would: ? Pee in the potty all by myself, eat french fries without fear of them blocking my intestines, play outside ALL day and not have to come straight inside to a cold bath.


22. My illness has taught me: more medical terminology than ANY 3 year-old has a right to know and understand… :) Also, how to NOT cry with shots, how to throw up and never even wake up from my sleep, how to put on a brave face even when I am scared, how to study people and things and not freak out until they start poking and to know that people in scrubs are not a good sign.


23. Want to know a secret? One thing people say that gets under my skin is: when people want Mommy and Daddy to hold me down against my will.  If you would just hurry up and do it I would be fine.

It get’s under MOMMY”S skin when people (doctors) say: “Oh, but she looks so GOOD!” Yeah, today.  But did you SEE her last night?  Did you notice that she STILL will not eat on her own and is nowhere NEAR being potty trained at almost 3.5?  Do you live with her?  No… if you would like to come take care of her for an entire you are more than welcome to and THEN tell me she is “just a normal kid”.  Mommy hates the word normal.


24. But I love it when people: brag about how pretty i am.  I love all things girly and princess!


25. My [Mommy's] favorite motto, scripture, quote that gets me through tough times is: Jeremiah 29:11 11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.


26. When someone is diagnosed I’d like to tell them: It will get harder before it gets easier.  There will be days when you want to quit.  You have no choice but to get up, dust yourself off and move on.  Change the things you can and let everything else go.  As a mom, YOU know your child best, period.  (Unless you happen to have a surgeon like ours that has been there since day 1 and then he might arguably known your child as well as you.. sometimes… LOL).  If you FEEL it… follow it.  Trust God, but keep a healthy questioning mind with doctors.  Sometimes the miracle IS the journey.


27. Something that has surprised me about living with an illness is: how amazing PEOPLE are.  I have more people who love and care about me than have ever MET me in person!  Wow… I must be special!

28. The nicest thing someone did for me when I wasn’t feeling well was: bring mommy and daddy a STEAK dinner when we had been in the hospital for a month!  I didn’t get to eat it but mom and dad said it was GOOD!!!  (thanks Stacy and Derrick!)  Also the care packages… nothing makes a girl feel good like a new pair of monkey pajamas!


29. I’m involved with Invisible Illness Week because: So little is known about ANY of my diagnoses!  If I don’t tell the world who will?


30. The fact that you read this list makes me feel: happy and hopeful that you will SEE me for who I am.  No more or less.


Recent Comments:

  • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

]]> http://family.kentuckystudio.com/2009/09/15/september-14-20-is-invisible-illness-week-kyleighs-version/feed/ 6 My Sister’s Keeper… a journey of the heart. http://family.kentuckystudio.com/2009/07/20/my-sisters-keeper-a-journey-of-the-heart/ http://family.kentuckystudio.com/2009/07/20/my-sisters-keeper-a-journey-of-the-heart/#comments Mon, 20 Jul 2009 16:08:41 +0000 Amber http://family.kentuckystudio.com/?p=11299 my-sisters-keeper

My little sister came over to babysit on Friday night so Troy and I could go on “date night”.  With wedding season bearing down on us its been over a month since we had a DATE!  We have vowed to never let ourselves go “dateless” again because we realize how important it is to maintaining ourselves as human beings invidually and together.

So I pick up a voucher for one of the 4 sets of free movie tickets that I got from buying all of my Kelloggs Cereal at Meijer during the Kelloggs deal (see older post) a few months ago.  We went to the theatre in hopes that the new Katherine Heigl movie would be out but alas… it doesn’t come out until next week.  So there we were standing and looking at our options … Harry Potter … never read the books or seen any of the movies and don’t care too (totally different topic).  The Johnny Depp movie… not up for knocking off banks.  Bruno… I had enough stupid humor this week when we rented “Mall Cop”.  No.  So there it was… My Sister’s Keeper.  The movie I SWORE I did not want to see.  I knew it was going to be some version of self imposed torture.  I knew that I was going to start crying at the lowering of the lights.  What I didn’t know is that this movie would change some part of me.  I didn’t truly realize how powerful it would be.  And yes, everyone in the theatre was crying, sniffling by the end but as the movie ended and everyone left the theatre there we sat.  Troy and I and ONE other couple.  Two rows behind us there was a couple in their mid fifties.  The gentleman had started crying before me, I believe and was as much a snotty mess as me by the end.  I told Troy as we left the theatre… they lost a child or came close…. and I truly wish I had asked.  Now I wonder… who was their child and what was their story.  The only reason I could conceive that this movie would move anyone so deeply as it had us was because they TOO had walked this road.

So I had seen the preview, but the REALITY of it all, was almost more than I can bear.  It seemed as if I were watching my own life on the screen.  I heard the crowd gasp as the mom, Sara (played by Cameron Diaz) is rather poignantly stubborn about her daughter’s medical needs.  I saw SO much of myself in her.  I listened as the whole crowd gasped and were horrified at some of the things that Sara said and did and I wonder how many people have looked at me horrified.  I wonder how many people thought the same of me as they did of Sara in the movie.  What kills me… is that the whole theatre sat there, crying, but they STILL did not get it.  I guess you never really can GET IT until you have walked in our shoes.

For me, getting to the ending, I knew what was going to happen but there was a twist that I never expected.  For me, it made the movie, OK.  I went into it almost angry at the younger sister who would be so selfish to NOT save her sister’s life.  As we journey throught Kate’s life and her “scrapbook” you might as well have torn my heart right from body.  Kate talks about how her brother went un-noticed and because of her and her illness they totally missed that he was dyslexic.  SO many times I have felt like my boys were the “lost boys”.  I wish I could tell you with words but I have none.

There she is, Sara, the mother that never cries.  Not until the bitter end.  She NEVER once breaks down.  She is busy.  Fighting, organizing, quitting her job to cook all organic and document every single time that her daughter “pees”.  Being almost obsessively organized.  Another medicine, another treatment, another surgery… just one more will be the answer….  Another trip to the doctor, even calling the doctor by his first name (one of the only times I laughed in the movie… at least Joe knows he is not alone.. if he had been seeing Camron Diaz’s daughter she would have called him Joe too!), at one point even proclaiming “There must be SOMETHING ELSE we can do”.  Knowing that all of those things have come out of my mouth.  Knowing that I have hung on just one more test, one more admission, one more step and wanting nothing more than to desperately find an answer.  Something, anything that would bring back “normal”.

Seeing Sara, a mother who literally went to the ends of the earth and back, for her dying daughter, there were so many decisions she had to make that I know, myself, I would have done the same thing.  I know… because I have.  The choices you make in the wee hours of the morning in a hospital room are choices that are, at best, animalistic.  Its fight or flight at its finest.  You turn off your emotion and you think with your instincts.  You turn off your brain and do WHATEVER it takes… period.

We spent two years in a hospital.  Two years.  That is 730 days.  Two years I fought, pushed, researched, drove, asked, emailed, called, begged, pleaded, and yet there was no “fix” for this thing that implanted itself into my daughter.  This illness, syndrome, association, whatever you want to call it.  I don’t know when it was that I realized that this will never be “fixed” but it happened sometime.  It happened and I realized that another hospital, another doctor, another surgery will not “fix” this.  I realized it and by that time the collateral damage was colossal.  I had hoped that I would wait for the smoke to clear but it seemed as if the rest of the world had just stood and watched us implode.  Without thought or care.  They stood by and watched this giant storm come straight for us and threaten our very existence.

THAT I just don’t get.  I don’t understand it because I would WALK through hell for my child.  I would DO anything.  I would GIVE UP anything.  I would say or go or try ANYTHING to make sure that any of my kids were ok.  Moreover… I would likely do the same for a stranger.  That is my human “condition” I guess.  The inability to say no to another charity, another project, another fundraiser.  Feeling the tugging at the heartstrings as they ask you “can you take some pics for the website” and knowing that you will likely never be paid.  (not that I would want to be…  because that IS who I am.)  I am THAT person.  The perpetually poor person.  My grandmother, who was quite nearly a saint in my eyes, told me… “I am sorry… you will never be rich…”  I remember thinking… wow.. that’s nice… but then she finished “you will be the one who is never rich because you spend too much time giving yourself away.”  Maybe she is the one who buried that inside me as a pre-teen or maybe it has always been there but that is who I am.  And being that person makes me not understand so many around me.  The ones who “act” like they care, but never call.  The ones who “say” what can we DO and then anytime you need something are suddenly busy.  I have never been that person.  If anything I prioritize those things- things I feel I OWE to others, favors, gestures above everything else and I quite often put them ahead of myself, my household chores, my business even.  So when other people are NOT inclined this way.  I don’t get it.  Especially those who call themselves Christians.  Those are the people who confuse me the most.  Those who are SUPPOSED to care and don’t and who cover it up with elaborately eloquent lies (which are… at heart … still lies).  Sigh.

Still such a journey, we are on.  Even after the smoke fades.  Even after you have started to rebuild and re-prioritize.  Even after its “over”… its never OVER.  Just as the closing in the movie.  Its never OVER.Recent Comments:

  • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

]]> http://family.kentuckystudio.com/2009/07/20/my-sisters-keeper-a-journey-of-the-heart/feed/ 7 Praise Report on Bentley!!!!!! http://family.kentuckystudio.com/2009/05/28/praise-report-on-bentley/ http://family.kentuckystudio.com/2009/05/28/praise-report-on-bentley/#comments Thu, 28 May 2009 13:36:48 +0000 Amber http://family.kentuckystudio.com/?p=11103 BentleyButton1Remember when I posted about Bentley?  She is the little girl who had a heart issue similar to Ky’s.  Bentley had Tetralogy of Fallot.  Kyleigh had a duke’s mixture of sorts of AV Canal and Tetralogy of Fallot.  Basically Ky’s heart was just REALLY a mess and they had no real term to call it.  So they struggled with making a diagnosis… at any rate…

Bentley came through her surgery with FLYING colors.  She had surgery on Wednesday, was off pain meds by Friday and was released to a hotel on Tuesday!  They even think she will go HOME HOME on Friday!!!!!!!!  What a miracle!!!  God certainly answered prayers there!

I have to say it brings me to tears (for many reasons).  I am so SO thankful that their family did not have to go down the road we went down…. but then again I look back and think… wow.  We were so “young” in this whole medical thing we had NO idea what to expect.  Other than my gut feeling that we were going to be there longer than the normal 3-4 days… we had nothing else to go on.  We barely even had those “fight” for her instincts.  We had no idea how to express ourselves or how to get our point across.  We had NO idea how bad off she was, especially since all of the CICU team were always so positive.  It never entered our minds that we might leave that hospital without her.  Never once did I ask a doctor “Is she going to die?” because it just NEVER occured to me.  We always thought… “oh we are in for the long haul now”… but overall I guess you could say we had blind faith. Even through surgeries that nearly doubled the time they SHOULD have taken.  Even through days of seizing, severely impeded heart rhythms, talk of pacemakers, collapsed lungs, 106 fevers, double staph infections, second open heart surgery, 80CC pocket of fluid BEHIND the heart, lost weight, blood and platelet transfusions, and and and…………  I never honestly thought that we would loose her.

Maybe it was the ignorance that kept us going.  Maybe that ignorance was a form of protection.  Maybe it was GOOD that we had no idea.  I find myself wishing that we had NOT been so ignorant because if I had known then what I know now… things would have happened differently.  I would have INSISTED that they test the fluid that oozed from her wounds where they pulled her lines and drains.  I would have INSISTED they figure out WHY there was a 106 fever.  I would have INSISTED that they find a reason for the collapsed lungs (before 2 weeks in).  I would have INSISTED that they called the doc in the middle of the night when she nearly drown in her own chest.

I have to say … I carry a certain bit of guilt from that night.  We kept telling her… Kyleigh girl… you CANNOT be in that much pain… you are going HOME tomorrow… PLEASE don’t do this.  We were so desperate to go home.  I am just REALLY glad that she will never remember those days because it was NOT her fault.  She didn’t DO any of it.  She was the one suffering and the only people we could feel sorry for were ourselves.  We were exhausted, sick, and desperate.  Yet somehow there was relief when they threw her in the bed to wheel back to the CICU.  I have never really seen a flutter of activity like that before.  You could tell it was an “emergency”… it looked like something straight out of ER or Grey’s Anatomy.  On went the O2 canula and monitors, ekg lines and pulse ox.  In 5 minutes flat we had packed our entire life (AGAIN.. remember by this point we had moved her swing, her bouncy seat, bottle sterilizer, EVERYTHING to the hospital… we were LIVING there) into two red wagons and were once again headed back to the ICU to learn our “fate”.  It hurts me to know that I was so ignorant that I did not even REALIZE what kind of pain she was in.  Today… if this happened, things would be drastically different.  I play this over in my head often and think of how the ending could change.  Even with all of our stupidity and ignorance God kept his hand on Ky.  Her experience served to strengthen our testimony.  Our daughter has been legally “dead” twice and God has give her new life.  What could be more powerful a statement?Recent Comments:

  • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

]]> http://family.kentuckystudio.com/2009/05/28/praise-report-on-bentley/feed/ 5 Give Away to Bring Awareness to CHD http://family.kentuckystudio.com/2009/04/06/give-away-to-bring-awareness-to-chd/ http://family.kentuckystudio.com/2009/04/06/give-away-to-bring-awareness-to-chd/#comments Tue, 07 Apr 2009 04:18:00 +0000 Amber http://kentuckystudio.com/family2/2009/04/06/give-away-to-bring-awareness-to-chd/

I find some of the most amazing blogs. Crystal’s daughter, Bentley, has Tetralogy of Fallot. Bentley was diagnosed at 2 days old and will be having her open heart surgery in May.

Her blog really struck a chord with me because after surgery, Kyleigh’s cardiologist told us that what Kyleigh had was actually a half breed Anomaly. She really had both AV Canal AND TOF but there isn’t any known “condition” that includes them both. Ky had the thickening and obstructions that are characteristic of TOF but structurally she had enough parts missing that she was an AV Canal also. Yes… yet again my child is 5% or less… what can I say? When describing Ky we say AV Canal because its easiest to explain but knowing the depth of her heart’s condition … I feel for this family.

Crystal is doing an amazing giveaway to raise awareness about Congenital Heart Disease and you should DEFINITELY go visit and enter to win. The contest runs until April 10th and the winner will be announced on April 11th!

http://thewelshfam.blogspot.com/2009/04/give-way.html

Some CHD facts from Bentley’s site:

  • Congenital heart defects are the #1 birth defect. Nearly one of every 100 babies is born with a CHD.
  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

Also… please keep our little friend Bentley and her family in your prayers as her OHS date approaches. Ky’s first OHS dates is the day that marked “the rest of our lives” and there was really no turning back. I don’t remember much of the Colostomy surgery because I was less than 2 days postpartum and HEAVILY medicated! I always think of her OHS as our “first surgery”. I know that surgery is old hat for Ky now but there is something about that FIRST one that is just heart wrenching. To have your first be OHS… my heart just aches for them.Recent Comments:

  • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
  • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
  • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
  • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
  • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

Random Posts

    ]]>     http://family.kentuckystudio.com/2009/04/06/give-away-to-bring-awareness-to-chd/feed/ 0     What is Special Needs anyhow? http://family.kentuckystudio.com/2009/04/02/what-is-special-needs-anyhow/ http://family.kentuckystudio.com/2009/04/02/what-is-special-needs-anyhow/#comments Fri, 03 Apr 2009 01:37:00 +0000 Amber http://kentuckystudio.com/family2/2009/04/02/what-is-special-needs-anyhow/ When is a child considered “Special Needs” or “Disabled”. When we look into the definition of these two terms, the dictionary define them as this:

    dis⋅a⋅bil⋅i⋅ty

    lack of adequate power, strength, or physical or mental ability; incapacity.
    a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job.

    spe·cial-needs or special needs

    Of or relating to people who have specific needs, as those associated with a disability:
    special-needs housing; a special needs teacher

    By that definition Kyleigh is neither disabled or special needs? In our house her needs aren’t “special” anymore. A little high maintenance? Definitely. But she is still, in spite of everything, growing, happy and healthy. She has no impaired mental capacity (that we can tell) and has consistently evaluated above her normal age range cognitively.

    So why then, when people see her in public dawning the black feeding backpack, are they horrified to hear that she has a feeding tube? Why, when I start into her story- upon their asking of course- do they seem like THEY are pained by the whole thing and seem to change the subject. Really… you asked… you didn’t want to know… so why ask?

    I have been very open about sharing Ky’s story. She is a miracle but it really does take a certain kind of person to get it. I guess people picture her to be on a catheter bag, being pushed in a wheelchair and are very surprised when she is not.

    But in comparison to a completely healthy child… she does have extra needs. They are special circumstances and a pretty amazing story. So where does our category of kids fall? Not mentally incapacitated, but still in need of special care? So what do we call these kids? I have found no good terminology and in so many “programs” that are open to “Special Needs” kids like First Steps, Respite Care, etc… Ky just doesn’t qualify. It has become normal to us… but reality is that my daughter is NOT normal. Antaomically, daily care, even something as simple as a medication for ear infection can send her into the hospital. So … how do we approach our kids?

    I want to be sure that she doesn’t get swept under the rug. I want to make sure that she has all she needs to live as normal a life as possible but it seems to me that there is a fair bit of discrimination for our kids. Not “mentally incapacitated” and not “normal”. They are caught in between and that scares me.

    I think as parents we find ourselves staying together and hanging on for dear life. No other parent can truly understand until they have BTDT. We make these “circles” and we find ourselves closer to people in other states and countries, than we do to those in our own family. Support and Insight into your exact situation is always at a premium and in our group, we seem to be the ones who refuse to settle. We travel across states and miles, across oceans and on planes to make sure that our children have what they need, yet somehow we are supposed to just go on like these kids are fine and normal because you cannot SEE their “defect”… which I hate that word… but anomaly is no better.

    How does one go about changing public perception? How do you tactfully explain it all? I know now… why people do not. They just stop explaining. They get tired of the looks and pained moans. They don’t want people to see their kids as some horrible painful life event. They are miracles… people should say WOW, with glimmering tears in their eyes. They should say… she is blessed… a true miracle… but they don’t. They should say… I am sure she will run the country some day… but they don’t. Maybe they will some day.

    Until then I will continue to educate and answer ANY questions asked of me. I know that we have tons of friends and nurses, doctors and fellow VACTERL parents on here who understand the medical stuff… but I am sure there are others who do not! Even our wonderful Sitter, Lexi, had no idea the totality of Ky’s issues.

    SO… next week… open week…(like at the Rigg’s Family Blog) any question you have about Ky, her care, her prognosis, her surgeries or treatments that have passed, our experiences, hospitalizations, home life, etc… feel free to ask. Ask anything and I promise I will find a way to answer. Post your questions in the comments on this post and I will answer them as soon as I can!Recent Comments:

    • XXX says A tip to save some cash when enjoying movies it that instead of heading to the movies on a busy [more]
    • daphne says I JUST LOVE YOU!!! You always amaze me. You’re wonder womman of another kind!! I know it’s hard to BE [more]
    • Jen says We are currently going through a pregnancy possibly affected by VACTERL…having more tests run. Would like to discuss some [more]
    • Jen says Hi Amber! It’s lunchablemommy – actually not on A full cup anymore, so I wanted to send you my [more]
    • Tracy says Love it! That is something Maggie would do. She loves Disney Princess stuff too. LOL. [more]

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