WELCOME TO NYANA'S MEDICAL MILESTONES...
8/12/06 ~ Nyana was brought into this world via emergancy Cecarian. After 3 days of induced labor, She was born at 9:10 p.m. weighing 7lbs 14oz. & 21in. Nyana was born with low blood sugar because I had gestational Diabetes, and she was given sugar-water at birth. It brought her sugars up just above the minimum of where it should be. About 7 hours after birth, her blood-sugar levels dropped to ZERO and she suffered a series of seizures from that. She was given an immediate mega dose of sugar water and then 2 hours later, was flown via medi-copter to Loyola's NIC-U, where she would be closely monitored for blood sugar and seizures. Nyana finally got to come home after a long 8 days in the NIC-U. I stayed at the Ronald McDonald House while she was in the hospital which was VERY amazing and so helpful for me to be close to her. After a CT Scan of the Brain, the Drs ruled her low blood sugar was what caused the seizures and because her sugar did not stabalize after the initial sugar water, there was further concern for Diabetes or Hypoglycemia. She was later tested for all of those, with results coming back normal. Thank God!
10/06 ~ I started noticing that Nyana did not track objects or look directly at me or anyone. I also noticed she didnt blink at the flash if her picture was taken. Also, her eye muscles would often dart and "shake" left to right quickly, not being able to focus. (Nystagmus) I started to get concerned and set up an appointment with her Pediatrician, who referred me to a pediatric opthalmologist.
10/19/06 ~ Met Dr. Kipp who examined Nyana's eyes and confirmed my worst nightmare. There was no reaction to the pen light! She had a little light perception with the deep scope, no pupil response in her left eye, and very little in her right eye. She would never have normal vision. Nyana's Dr saw the "double ring" (Which i found out is a sure sign of under-developed optical nerves.) He then called his assisting Dr. in to confirm what he was seeing. Nyana was diagnosed with SEVERE OPTIC NERVE HYPOPLASIA (ONH). Her Dr wanted a full MRI work-up of the Brain and Orbits to determine whether or not she had a co-existing condition called SEPTO OPTIC DISPLAYSIA, otherwise known as Demorsier's Syndrome. (SOD) is when the patuatary gland (where the optical nerves connect to the brain) is effected by the underdeveloped optic nerves. This causes all kinds of problems related to hormones...growth, diabetes, etc.
11/20/06 ~ My gram & I took Nyana to get her MRI at Children's Memorial Hospital.
11/23/06 ~ I went in for my Gall Bladder Surgery, and shortly after recovery I got a call from her opthalmologist stating that he had the MRI results. He said the results showed normal patuatary area and everything looked normal & intact. SOD was ruled out. YEAH! Thank GOD!
12/07 ~ Baby's 1st Christmas was happy & sad. Nyana had a vision problem. But she didnt have a hormone problem!
2/17/07 ~ Nyana is 6 months old and starting to show developmental delays.
4/07 ~ Nyana has been seeing the Loyola NIC-U follow up team of specialists every 2 months. She was seen by the head of Pediatrics & Pathology and was ordered a full endo-cryn work up and blood analysis. Results came back normal with her protein a little low but otherwise everything was good. THANK GOODNESS! (She also was determined to carry the sycle-cell trait, but not the gene. I was told that this will probably not effect her directly in any way, but that she has the possibility to pass the gene on to her future children.)
5/07 ~ I decide that at 9 months, her delay is more obvious and so I made some calls. Early intervention is the state funded program for 0-3 years to provide therapy assistance. I contacted them & was put on a waiting list for the county she was born in. I later found out that she should have been serviced for the county she lives in. A bit of a delay~
8/12/07 ~ Nyana turns ONE! YEAH!
9/07 ~ I was investigating the medical information on ONH on the WEB and came across the STEM CELLS CHINA project. I started investigating. good stuff! I have a new MISSION... CHINA FOR NYANA!
10/07 ~ Nyana was finally accepted into E.I.'s program and set up for ongoing therapies. Now we just had to wait until a therapist could start treating her.
11/07 ~ Nyana's first therapist comes on board. She is a Developmental therapist with VISION. or a DTV. YEAH! Pat starts!
12/07 ~ 2nd Christmas ~ GOOD NEWS! Pat, her only therapist just got a job at the Lighthouse Academy for the Blind in Chicago, and they are letting her keep all of her current patients! YES! A foot in the door at somewhere very important to Nyana's future!
1/28/08 ~ A sad day. We lost my Grandma Betty, and Nyana's best buddy. =( ~ also the day before I started to return to college.
2/08 ~ Nyana is now 18 months old. Nyana does not say any words, does not crawl, & doest not walk. She stands assisted against a couch for a bit. She babbles but doesnt mimick words. She scoots & rolls all over the floor. She has tactile/texture defensiveness & will only eat certain foods that are blended up to a certain texture. She is and has been reluctant to touch/reach for anything. She has limited toy play to what she hears/recognizes that is familular. She has 1 therapist & needs atleast 2 more. We are on the waiting list still. (She REALLY needed occupational therapy & Physical therapy.)
3/2/08 ~ Nyana gets a P.T. (physical therapist)on board! YEAH! But we have to drive there. boo.
3/17/08 ~ Nyana sees her eye Dr. for her 18 mo. check up. Improvement with Nystagmus. No more shakey eyes! Yeah! her eye muscles are catching up! BUT, no difference in her vision. boo. *I confirred with her Dr. about the trip to China & saught out his consent to do post-op check ups. I needed to have the pictures of the Optic Nerves taken, and a VER test. He referred me to UofI medical Hospital where the specialists there could do the tests. YEAH!
6/08 ~ Finally get a response from UofI to come in for an exam and possible testing.
7/08 ~ We went to FL for the 4th! Nyana's 1st vacation & 1st time at the beach! WHAT FUN! Nyana's walker has come in through P.T. We will start walking now!
7/08 ~ Nyana was seen at UofI medical Hospital's Head of Pediatric Opthalmolgy Dept. He scheduled her VER test to be performed. (This is the "visually evoked response" to see if any images or responses to light are captured/sent to the brain, and to what extent.) Nyana has been walking for about a month with her walker. *It looks like a miniature version of the walker that is often found with geriatric patients, for lack of a better description. (And yes. It has little tennis balls on the back of it that Grandpa installed so she can glide on the hard wood!)
7/20/08 ~ Officially decided to start the FUNDRAISING MADNESS I have come to call it. BRING IT ON!
8/05/08 ~ Nyana had the VER test. She had a response in BOTH eyes to the brain, and WITH both eyes! YEAH! No pictures of the Optic nerves yet. Need to see whats up with the DR! *GREAT NEWS! ~ wouldn't you know, we waited for an O.T. (occupational therapist) FOREVER, and now 3 have fallen into my lap! You mean I get to choose?? I decided to split up the time between 2 therapists. She get's co-treated with her Physical Therapist every other week, and then the other two weeks she is lucky enough to be seen by an O.T.V.! (yes, vision occupational therapist!) I have to drive her into Chicago to the Lighthouse for that, but its worth it!
8/9/08 ~ Her IFSP plan with Early Intervention is re-written to add in SPEECH Therapy. (Since she is turning two and still has not expressed any words. She mimmicks sounds ok, but no actual words, not even momma. =(
8/12/08 ~ NYANA TURNS 2! YEAH! Her fundraiser flyers are out, and doing what I can to get places & people to help in any way.
8/15/08 ~ Nyana has had a response for a Speech therapist! Yeah! She starts next week! She is also walking a little bit on her own with the walker, no guidance from an adult after she gets going..very little steps. so cute!
8/22/08 ~ Nyana has started Speech therapy, since she is now 2, and is underdeveloped in her expressive language skills. She has great cognative language skills - she understands me, and listens. Still hasnt said MOM, MOMMY, MOMMA or anything close. Keep your fingers crossed for me. The S.T. ordered a messager for her face to stimulate her vocal cords. (HA! She has them, trust me!)
8/31/08 ~ Started this WEBSITE
www.nyanasonhcure.com
9/2/08 ~ Have to re-schedule the Optic Nerve photos since the Dr. was out of town.
9/19/08 ~ NYANA'S FIRST FUNDRAISER! Cedardell Golf Outing! HOPE YOU JOIN US!
10/11/08 ~ Nyana's 2nd Fundraiser! The Fall Family Fun Fest!
11/08/08 ~ Nyana's 3rd Fundraiser! The Gala At Mio Amore!
Spring /09' ~ TAKE NYANA TO CHINA FOR STEM CELL THERAPY! YEAHHHH!
