Yesterday we had a wedding and at least it was beautiful weather. Relatively cool- upper 70′s and a breeze! We couldn’t have asked for better for an August day! Kyleigh is back in the land of puke. Twice yesterday. I am truly anxious for these next set of appointments to come and go (Dr. Kaul (motility) and Dr. Kiessling (nephrology)) so that we can make some decisions about Nissen, decompression, etc….

Even with all the diagnoses we have on Ky I still cannot shake this feeling that there is “something wrong”… something bigger that we are just not quite getting. I have the privilege of sometimes talking with a mom who lost her daughter at 4 years old to a rare lung disease. We were sitting in Starbucks one day chatting and she said something that I will never forget. She told me that if I felt there was something wrong… to NEVER stop pushing and looking for it. I believe that she knew there was something wrong with her daughter and couldn’t get anyone to listen. I can’t stand to think that with my loud opinions that if something were really wrong that I wouldn’t be able to find SOMEONE to listen. I don’t care if I sound completely crazy I just need someone to humor me. For what? I don’t know… but I am determined to find out.

Nausea, Vomiting – its just not right for a child to puke 2-3 or more times per day.
Random Fevers – spiked up to 104-106 for a few hours and then disappearing as quickly as they came.
Mystery bruises and “black” Legs – My child gets bruises all the friggin time and I never have any idea where they come from! Every shot, IV, etc gives her the most awful bruises. And the Black Legs… well we never found an answer to those either.
Infection after Infection in every system from GI to Sternal to Urological… so yeah the Immunologist think Ky may just be a kid who runs “low” on the immune system… that may be her normal. Well fine… if we were not constantly on some abx for some infection or another I would believe that is fine… but reality is that its not ok. Just because my kid doesn’t get the normal snotty nose, ear infection, sinus infection doesn’t mean anything… there are thousand of infections one can have.
Fatigue/ Lack of energy.. it breaks my heart to watch Kyleigh in the back yard. She rarely RUNS and certainly can not keep up with the boys. Everything is slower for her. I often look out in the back yard to see the boys running and playing and Kyleigh is sitting on the steps watching. She wants so badly to run and play but she cannot tolerate the heat and she certainly cannot run with the boys.
Lack of Balance- obviously this is Chiari related but my child still cannot wear real shoes and actually stand up straight and walk down a hallway. She can barely walk down the hallway barefoot.
Pain- where I don’t know… I just know she hurts inside… maybe its her bones or joints, muscles, heart, chest, bladder, something.. but somewhere she is hurting. I honestly believe that she is in a lot more pain than we know.
Prolonged time to “heal” a normal cut or bruise… Ky scraped her knee on the concrete and I watched as it took nearly two months for the scrap and scab to completely disappear. Also, right after her heart surgery… after they pulled her art line it literally took 2.5 hours of holding pressure to get her to START clotting off. Anytime they pull an IV they have to hold it forever because she will bleed through the entire gauze pad. I noticed this again after her shots this time. One shot… she soaked through the Bandaid before we could leave the office. That just doesn’t seem right to me.

These things… I haven’t a clue what they add up to but its something. Two year olds don’t just GET things like Pemphigus… there is SOMETHING WRONG. Megan has told us before that maybe we need to step back and take the “Kyleigh diagnosis” out of the equation. If we were looking at a normal child… who was getting the things I listed above – who did NOT have VACTERL and did NOT have heart condition, no anus, spinal cord issue… WHAT would the doctors be looking for??? That is what I want to know. Or would they be blowing me off even more because at least our VACTERL gets us some liberty with the “what if” scale. It seems that every doctor we see dismisses these things and “just Kyleigh”… but I just cannot get past the fact that this just isn’t right.

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