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Special Needs

Luke has special needs.  That is just the truth.  God gives our family the grace to walk though these things.  At times it can be frustrating, irritating, sad, anger inducing and depressing to watch Luke deal with and sometimes suffer because of things he has no control over.  HOWEVER we praise God that HE chose US to be Luke's parents.  That WE are the one's FIGHTING, ADVOCATING, ENCOURAGING, HELPING and LOVING Luke.  Even on the WORST day, I thank God that we can get Luke the BEST medical care, and that we have him in our lives as this INCREDIBLE gift from God!

The is the list of Luke's special needs: Microcephaly, ADHD, Tourette Syndrome (Tic's), Glaucoma, Sensory Processing Disorder and Auditory Processing Disorder

Microcephaly means essentially "small head".  Luke's type of microcephaly is inherited congenital type (meaning he was born with it).  He sees a genetics doctor at Legacy Emmanuel to help us navigate genetic issues that have come up.

ADHD: is Attention Deficit Hyperactivity Disorder.  Luke's case is mild to moderate.  Different sensory strategies, heavy work and OT can help him be successful.

Tourette Syndrome and ADHD sort of co-exist together.  If you have one  you are more likely to have another.  Just recently diagnosed, Luke has had a myriad of tics (eye blinking, nose sniffing, shirt chewing, clearing of the throat).  This is followed at Legacy Emmanuel.

Glaucoma is the big one at our house these days.  Essentially glaucoma is an older persons disease.  But there are cases of early childhood onset glaucoma (which is what Luke has) 1 in 10,000 were the odds in this lottery that we won.  Basically the eye builds up pressure because the fluid in the eye doesn't drain the way it is suppose to.  This build up puts pressure on Luke's optic nerve and if too much pressure is put on the nerve it causes irreversible vision loss, starting first with one's side vision (or peripherally vision) which is what is happening to Luke.  He takes eye drops each night and they are helping to relieve the pressure in the eyes.  We go monthly to some appointment regarding his eyes.  Luke is followed at Casey Eye OHSU.

Sensory processing disorder is the inability to normally process and filter sensory stimuli in the environment.
Typical people are able to filter the humming of florescent lights or the refrigerator or not be bothered by minty toothpaste or scratchy tags in their shirts.  Luke is not able to filter this sensory input.  It causes him to overload and build up in intensity.  This may come out in behaviors, mood changes or acting out.  He needs someone (although we are teaching this independently) to help "bring him down".  This done by heavy work, weighted clothing items or blankets, swings, pressure, etc.

Auditory processing disorder is the inability to discriminate effectively through things that we hear.  This most translates into difficult time processing spoken language and reading and decoding text.  This is being addressed along with sensory in the new therapy that Luke is doing with the iLs (Integrated Listening Systems).

Heart Condition: Luke had a PDA or hole in his heart when he was three.  Surgery was preformed that closed the hole in his heart and he has been great ever since.  The doctors explained that this was a genetic condition from birth.

Ear Tubes and Hearing Issues:  Luke has had 3 ear surgery to place tubes (5 months, 18 months and 3 years).  It was thought that at one point Luke had hearing loss.  While growing older the amount of ear drainage and ear infections has lessened and we are happy to report that his ears are no longer an issue and he hears perfectly!
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