It’s that time of year where school is ending and summer is coming and it’s exciting being a Midwesterner. I really love the change in seasons. A change in seasons means a change in orders for Anna. What are orders? Oh goodness they are loads of paper with all kinds of things that must be done and okayed for the school to be able to do all things that Anna needs. So I sat and signed 15 pieces of paper with my name, Pauls name, Anna‘s name, date of birth, and an emergency number. This is to comply with all the forms that need to be returned to school every year.
I am lucky enough to have a nurse who fills them all out and then I get to send them to the doctor. I let them get back to me and fill out my portion. I started sending a self addressed envelope to the doctors office. This is because I know how busy they are and I have the daughter that needs all these things signed every year. Help out these offices if you can, they have alot to do.
This year I needed a new letter for her one on one Nurse, I guess a new protocol. I never had this before, but as a diligent Warrior mom, I comply with everything. The letter was sent and well I’m happy that this many years after having her I can find humor in the realness of her life.
Anna has 33 diagnosis
Yes, 33. Now three is my favorite number, but I thought it was kind of comical that her diagnosis now lists 33. . she had more things on her “problem” list than her age! I read them, each and every one. I used to know in my heart that she’s pretty complicated. Now I can see it on paper!
I thought I’d share some of them here because maybe just maybe you or your family or someone has many diagnoses too. I know this is procedure for the school. It’s the fact that we have to list everything to get the services we need.
It would be awful if you were told when your child was born someday they’ll have 33 diagnoses and you’ll have to fill out more paperwork than you would believe! I was thinking that maybe I could get a laugh out of someone when they ask about her. What if I memorized or made a song with all these issues? You know the jingle tune like kinda thing? I could make it rhyme. A best selling rap song? All these funny things came to mind.
And here they are:
Genetic Syndrome (yep, Wolf-Hirschhorn Syndrome)
Kidney Transplant (12/21/16)
Quadriplegia (never really thought of this one, because she doesn’t walk?)
Mixed receptive-expressive language disorder (fancy name for non-verbal)
History of ileus (Anna’s stomach stops and distends since transplant -hospitalized 25 times for this)
4p- syndrome (part of the Wolf-Hirschhorn Diagnosis)
Stage 3 chronic kidney disease (yep that’s why she is transplanted)
Cognitive Impairment (age 6 mos to 2 years cognitively)
Constipation (self explanatory)
Corneal Scar, left eye (years of eye poking must have left damage)
Cortical vision impairment (Anna is legally blind)
Dysphagia (doesn’t want to swallow, hence tube fed)
Exotropia (eyes deviate inward)
Gastroesophageal reflux disease (reflux)
Gastrostomy in place (g-tube)
History of recurrent UTIs (since age 4 consistent)
Hyperlipidemia (abnormal levels of lipids)
Hyponatremia (sodium is too low in the blood)
Immunosuppressive encounter following kidney transplant (meds from transplant lower her immunity)
Iron deficiency
Myopia with astigmatism (eye issues)
Recurrent urinary tract infection (lots of UTIs that require monitoring)
Seizure disorder (lifelong brought on by seizures)
Urinary retention with incomplete bladder emptying
Gastrostomy tube dependent
Wolf Hirschhorn Syndrome
Long term use of steroids
Pituitary diencephalon syndrome (failure to thrive)
Deaf-mutism
Mayer-Rokitansky Kuster Hauser syndrome (female anatomy not all complete or intact)
Developmental non verbal disorder
Wheelchair dependence
Behavioral and emotional disorder with onset in childhood
So in the end we see terms. In life we need these terms. I’m often asked what Anna’s medical issues are. It’s always been hard to explain. The truth is these are part of her 33 . . . . and counting. We love her because she’s exactly all these crazy things at once. She’s feisty and full of life, a great companion and the best listener you can ever imagine.
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