Timeline of Dakotah's major life events

I should preface all this by saying that I’ve pretty much done this all on my own with no child support or medical/financial assistance from the state.
TIMELINE OF HER LIFE –

2/10/98 – Dakotah was born @ St. Joseph’s Women’s Hospital in Tampa, FL.
She was delivered via c-section after she wasn’t dropping down into the birth canal. There were no complications other than that and at 3:51 a.m. on the 10th I held my beautiful little girl not having ANY idea that anything was wrong with her.

4/1998 – Dakotah began having strange clusters of movements so I took her the pediatrician. Luckily she did it while we were there and he said that she was having a seizure. He referred us to the neurologist
who ordered an EEG. The EEG was uneventful so it didn’t really show us anything.

4/17/98 – Appt with neurologist for results of EEG. Inconclusive. She started having a cluster of seizures at his office so he admitted her to University Community Hospital for an MRI. On Saturday, 4/18, the neurologist came in and said, “It’s not good. She has 4 cysts in her brain and needs surgery immediately.” She was transported from UCH to All Children’s Hospital in St. Pete, FL. and put in ICU. That was the longest ride in that ambulance. They attempted to stabilize her seizures and then I met with the neuro-surgeon that would be performing her surgery.

4/28/98 – A craniotomy was performed. The surgeon cut open her skull and successfully drained all 4 of the cysts. He then did something to connect them all together and then to the main drainage ventricle that we all have in our brains. Fortunately she did NOT have to have a shunt and the cysts have NEVER come back – knock on wood. Spent 3 weeks in hospital 4/25-5/15/98.

5/10/98 – Spent my first Mother’s Day with her in the hospital.

6/1998 – After seeing a developmental doctor at USF developmental center, she was referred to a neuro opthamologist bc the doctor knew of some syndromes that affect vision and Dakotah wasn’t tracking things as she should’ve been doing at that age.

6/1998 – The neuro opthamologist found colobomas (holes) in her retina and on her optic nerve and diagnosed her with Aicardi Syndrome. My journey with her began.

7/1998 – Dakotah started attending UCP (United Cerebral Palsy) and receiving speech, physical, and occupational therapy.

8/1998 - Took Dakotah to Canada to see dr. and get rx for seizure drug that was not FDA approved at that time. That was a nightmare once I got back bc had to get meds through Mexico and then they wouldn't arrive on time bc of time through customs. Quickly stopped that.

11/6/98 - Modified Adnoidectomy and first set of ear tubes

1/1999 – Started going to Shriner’s Hospital – she was diagnosed with scoliosis – small curve at the time. Since that time, it has progressed to the 54 degree curve that she has now that is the reason she has to have spine surgery in November to have the rods placed in her back.


2/14-2/21/2000 – Dakotah wouldn’t suck on her bottle or eat anything – she wasn’t able to control her tongue/use it as she was supposed to so she had her feeding tube put in. Also had upper respiratory infection.

6/5-6/8/00 Attempted to try Ketogenic diet for seizure control - ended up not working

11/11/2000 – She was having a lot of reflux so she has a Nissen Fundoplication done. It is a surgery in which they cut open her chest and tied her esophagus into a knot just above her stomach. It allows for her saliva to be able to go down, but nothing can come back up and out. Spent a week in hospital.

2/2001 – Dakotah turned 3 yrs old and life changed in terms of funding – No more part C funding which paid for pretty much anything I needed for her – including therapies and respite. She was now placed on the MedWaiver waiting list (Medicaid that isn’t income based). 9 YEARS LATER SHE IS STILL ON THAT WAITING LIST!!!!!

8/2001 – She started public school. No more speech therapy bc she needed/needs oral motor therapy and the school systems view that as “medical”, not educational. No more occupational therapy bc they
said that she wasn’t “cognitive” enough to receive that therapy. Physical therapy was 30 min per week. Mind you she had been receiving all three therapies for 30 min 3x per week. *She currently receives NO therapy bc regular health insurances will not pay for ongoing therapy like she needs and school said that she had reached her maximum potential in terms of gross motor skills.

8/2004 – I had to totally change careers from Juvenile Probation to being a teacher because I could not find a daycare that would take her for after-school care. *Side note – I LOVE my job as a teacher – I teach
students like my daughter w/moderate to severe/profound disabilities.

2005 - 2nd sets of ear tubes and another adnoidectomy

7/2007 – Dakotah had tendon splat surgery on her right foot because it was starting to twist outward. The surgery was a temporary success. Her foot is not twisting out again. She has hard plastic foot orthotics that she has to wear. One week in the hospital.

2007 3rd set of ear tubes

5/2008 – I was nominated and won “Florida’s Female Caregiver of the Year” by the Florida Respite Coalition. Just wanted you to know that bc I am so proud of that!!!

10/2009 – Salivary Gland Ablation procedure at Nationwide Children’s Hospital in Columbus, OH. (The doctor is the only one in the county that performs this procedure.) After first ½ of procedure, her airway swelled shut, they had to put in a nasal trumpet so that she could breath. She was in ICU and developed pneumonia. She ended up spending 8 days in the hospital. The day she was released from the hospital, we were at a friend’s house bc she was taking us to the airport the next morning. That’s when I fell down her basement stairs and broke my ankle. I had to have surgery once I got back to Florida. These 2 events are what started the downward spiral of my financial life. I was out of work w/o pay bc I had no sick leave left and teachers can’t donate sick leave to other teachers.

12/2009 – We went back to Ohio for the 2nd half of the procedure. This time it went well (Thank God!!!).

5/2010 – Everything had snowballed by this point and we ended up homeless (living with a friend at least).

7/2010 – Continued not paying all credit cards and any medical bills so that we could move into our own place. Luckily a friend had her house for rent for $600.

8/2010 – Got the news that Dakotah would have to have surgery on 11/16 to have titanium rods placed on each side of her spine with a wire weaving through each vertebra to hold the rods to her spine. She will have an incision from her neck to her tailbone (breaks my heart to think of this) and the wires will be anchored to her tailbone. She will be in Arnold Palmer Hospital in Orlando for a minimum of 5 days and then home from school until we go back in January 2011.