The Down and Dirty written by Jennifer

Kamora, born a healthy baby, was the victim of severe abuse and shaken baby syndrome at the hands of her father.  When Kamora was 6 weeks old her mother returned home from work and found Kamora to be lethargic.  She immediately took her to the ER and this is where the nightmare begins.  Kamora suffered 27 rib fractures, both legs, arms, clavicle, and a tiny little toe were broken. Kamora was near death the night that she was admitted to the ER and transferred to Children’s Hospital.  She was placed on life support and her family was told her prognosis was very bad.  The following day, the family were told that the brain damage was so severe that she would never recover from it and at best she would live in a vegetative state.  Kamora was a fighter and though taken off the life support machines she fought to live.  Kamora has spent the last eight years in a partial vegetative state.  She has endured multiple surgeries as well as daily seizures. Though Kamora will never recover, there are things that can be put in place to make her quality of life better.  Kamora, her three older siblings, and mom live in a small apartment.  Her mom is her primary care giver and gives her kids everything she has.  Kamora’s older brother also has many special needs, as a result of the abuse and the events that followed, and needs constant supervision because of PTSD.  Lisa has spent the last eight years learning how to care for her daughter and son with what she has.

Kamora’s family is in desperate need of a handicap accessible home.  They need a place that as they grow will provide the equipment needed to move and bathe Kamora and space for the therapies that help her little body be comfortable.  We are raising money to provide a home that fits the family and their special needs. 

Please read the other blog posts to learn more about the family and their entire story! 

Jennifer

Click the link to donate:

https://www.gofundme.com/home-for-kamora

A Short Story From Lisa

Background-

Through High School and into my mid 30s I worked For McDonalds.  17 years total I worked for the company.  I worked for various owner operators and for corporate owned stores.  I worked as a crew member and worked my way up to a Store Manager.  Also held an Office Manager position and Assistant to the Owner Operator for two different Operators.  I worked my tail off for many years.  For a few years, about 5 years of my adult life and while caring for my children I worked two full time jobs.  I know what hard work and dedication is.  I know what good work ethic is.  Alongside of this I held various other jobs such as payroll and bookkeeping.

Currently and for the past 6 years I have been working as a CNA.  I get paid to stay home and care for Kamora.  Many people say "Oh you're so lucky to get to stay home with your kids and get paid".  I suppose so.  I am lucky in a sense.  But it comes at a cost.  That cost was almost losing my daughter at the age of 6 weeks old.  That cost comes with the stress of multiple surgeries over the past 8 years.  That cost comes with a son that has a severe emotional disability who gets bullied at school and out in the community and at times is an aggressor towards others due to being bullied for his meltdowns.  That cost comes to being home and not able to work outside the home and having limited adult interaction.  That cost comes from only trusting a very small group of true friends with your sorrows about the struggles you have with everyday life and the constant obstacle you have to overcome while throwing a happy face on and making the world believe that everything is just fine.  All the while others are complaining that they have a cold, or they cant pay a small bill because they wasted their money on something stupid.  And telling them that everything will be ok and things will work out.  I am not looking for sympathy.  I am looking for understanding.  I am looking for people to know that there really are people out there with major struggles that are not out in the open.  And there are people who have it worse then I do.  In our world of chaos and hatred.  Lets seek love, acceptance, and understanding.  Lets stop sulking on the little things.  I have a GOD.  And he is a big GOD.  And I may not always act the part.  When I get upset my mouth does'nt always represent my Christian faith.  I admit it.  I fail at that.  But I try.  Everyday I try to be a better person.  A better mother.  A better friend.  A better neighbor.  A better Christian.  And I try to understand.  

I am able to finance a house.  I just cant finance this house.  It is double what I qualify for.  This is why my friends and I are asking for donations to cover the difference to make my life a little bit easier for my kids.

To donate:

https://www.gofundme.com/home-for-kamora

or PayPal

account: jenniferand kamora@gmail.com

Thank you for taking the time to read.

Silent Auction and Family fun Carnival May 20, 2017

Stay tuned for details for the silent auction.  It will be held Saturday May 20th at Mississippi Avenue Baptist Church.  More details to come.  We just have the date booked right now.

Anyone who is willing to donate items for the silent auction please contact Lisa for now.  We will update here other contact names as we get everything organized.

We will have a carnival with pony rides, face painting, games, cake walk, working on doing a raffle. food, popcorn, snowcones, cotton candy, bounce house and more!!!!!

Still looking for donations!!

Lisa's email address is
leesamiller222@yahoo.com

Kamoras Story Part 2 and where is DAD

Kamora’s Story Part 2

Kamora is not out of the woods yet.  Actually she never will be out of the woods.  She will have a lifetime of struggles but for now it’s a time to heal from a major tragedy.  First I will discuss her diagnosis.

• ·         Cerebral Palsy
• ·         Spastic Quadriplegic
• ·         Epilepsy
• ·         Cortical Visual Impairment

It took several weeks for Kamora’s broken bones to heal.  As stated in Part 1 her right arm never fully healed properly.  Due to the severity of Kamora’s head injury she functions at a 3-4 month old infant.  She does not have complete head control.  She is wheelchair bound.  She cannot sit on her own or stand on her own without 100% support.  She is fed primarily thru a feeding tube in her stomach only taking baby food or pudding by mouth for pleasure not for nutrition.  She cannot have liquids or solids by mouth.  Kamora needs 100% support in all activities through life.  Bathing, feeding, moving, dressing.  She can’t even roll over on her own when laying down.  Kamora has undergone a number of surgeries in her 8 years here on earth.  (Please see post on surgeries and procedures)  Kamora spent the first several months in a medical foster care home because Human Services did not think that I could meet the needs of both Kamora and Jacob.  But I proved them wrong and Kamora was home by her first birthday.  The past 8 years have been a struggle with multiple doctor appointments and surgeries on top of Jacob’s emotional struggles and problems at school but somehow I manage.  I have a good support group.  I have a handful of super close friends that I trust with my life.  And a larger group of good friends.  And a whole lot of acquaintances.  I do get respite care for Kamora.  So that makes it a little easier to get things done and do things with my kiddos.  Kamora has a compromised immune system so I am very careful not to take her out in extreme weather.  She doesn’t have the ability to regulate body temperature well so I have to keep her warm and cool her off when she gets hot. 

Going back 8 years Kamora’s father took a plea bargain for the child abuse and is currently serving time in prison for the abuse which led to her disability.  Sadly, he has behaved himself in prison and he will be getting out this year.  Probably sometime between May and July.  We have already moved once and would like to move once more.  This house we are raising money for will remain unknown to the public for this reason.  There was a no contact order placed on the father with both Kamora and Kolisa her sibling until they reach the age of 18.  However, the father continued to write letters and send cards up til 2 years ago when I reported it to parole board and then it stopped.  It is really heartbreaking that someone can come so close to killing their child and walk out of prison in 8 ½ year’s time and live a somewhat normal life.  Kamors’s life will never be normal.  My life as her caregiver will never be normal.  And her siblings and extended family will never have a completely normal life as they watch my family struggle with her lifetime needs as well as the emotional needs and support that Jacob needs surrounding his PTSD.  I have attended every parole hearing in person or by phone and I have fought to keep hime locked up.  This is not something a mother should have to fight for after her child was a victim of such a horrific violent offense.  But this is the sad truth of our judicial system.  And this is the value that we have put on life.  Every year I have had to relive the event by writing letters to the parole board and by speaking to them at these parole hearing to keep him in there.  I have done all I can legally.  Now all I can do is move on and do the most I can do to provide the best way possible for the best life for my kids.  

The pictures below were taken the day we took her off life support but after all the tubes came out and she was clenaed up and we realized she was a survivor.

Why its so urgent to raise money for this home and how did this come to be

DEADLINE MAY 2017

 A mutual therapist of my daughters and the family currently living in the home knows of the current homeowners needing to sale and move and me wanting to buy a home.  And she thought it would be the perfect home for both of my special needs kids.  I will not give her name here online.  Anyway she asked both parties if we were ok with exchanging information to discuss the matter and we both said ok and this is where we are at.

We aren't just helping my family but we are helping the other family as well.

I am in desperate need of this home to not just care for my daughter Kamora for the rest of her life who is severly handicap but also Jacob who has a sever emotional disability whom we still are not sure that he will ever be able to fully live on his own.  One of the downstairs rooms is nearly sound proof which would help significantly with his sensory issues and meltdowns.  I can afford to buy a home but not in this price range.  I have to raise funds to pay the difference.  I will never be able to afford a home that can provide all the things this home can provide for each of my kids.

How can it help the other family currently living there?

Well that family is moving and building on land and starting a non profit therapy farm.  But sadly their special needs daughter has such severe sensory issues that she can hardly stand being in her wheelchair for 10 minutes let alone leave the house.  I cant imagine the anxiety and fear of this family trying to sell their home and have to try to leave with their daughter or have her in the home while strangers trample through and scare her daughter startling her into fits.  So we are both in desperate need of something here.

So please consider donating anything you can to help make this happen for two families.

Pictures of the accessible parts of the home to care for Kamora

A Day In The Life Of Kamora

A Day of Life for Kamora

Morning Routine  Total time 3-4 hours

Up at: 4:00-5:00am

Care and Positioning:

•       skilled therapies working with her sensory issues, vision stimulation, about 30 minutes of range of motion
• ·         observation of pressure points
• ·         feeding by mouth for pleasure and sense
• ·         repositioning every 1-2 hours to prevent skin breakdown
• ·         transfers in and out of wheelchair, bed, side layer, stander, floor
• ·         undressing and redressing for the day
• ·         apply leg splints and hand splints
• ·         do hair
• ·         assist with ambulation

Feeding:

·         morning feed runs about 45 minutes thru g-tube in stomach

Medications:

·         Given with morning feed

Cleaning:

·         Change diaper, perineal care

·         Wash face, hands, brush teeth

Mid-Day Routine appx 1.5-2 hrs

Feeding:

• ·         Feed runs about 45 minutes

Care and Positioning:

• ·         Remove and Reapply leg braces and hand splints to check for skin break down
• ·         Change diaper, perineal care
• ·         Wash face
• ·         Repositioning as needed every 1-2 hrs
• ·         Range of motion activities
• ·         Transfers from bed, wheelchair, floor
• ·         Assist with ambulation

Night Routine appx 4-5 hrs

Night routine typically starts between 4:00 and 5:00 p.m depending on the night

Care and Positioning:

• ·         skilled therapies working with her sensory issues, vision stimulation, about 30 minutes of range of motion
• ·         observation of pressure points
• ·         feeding by mouth for pleasure and sense
• ·         repositioning every 1-2 hours to prevent skin breakdown
• ·         transfers in and out of wheelchair, bed, side layer, stander, floor
• ·         undressing and redressing for the day
• ·         remove leg splints and hand splints 
• ·         do hair
• ·         assist with ambulation

Feeding:

·         Night time feed runs about 2.5 hrs thru g-tube in stomach

Medications:

·         Given with evening feed

Cleaning:

• ·         Change diaper, perineal care
• ·         Bathing, shaving 2x per week, and hair typically take 1.5 hours a day from start to finish.

Transporting:

·         I had an accessible van but it constantly broke down so I had to buy a new car and had to get a $2500 car seat that would accommodate Kamora’s needs. But I really miss the convenience of the accessible van.  It was so much easier.

Does she require care or assistance through the night?

·         Rarely does she require assistance through the night unless she is really sick or after surgery and has more needs to be met or if I hear her have seizures

Equipment to care for her:

• ·         Kamora has a wheelchair and a stroller that she can be transported in
• ·         Hospital bed
• ·         Side layer for positioning
• ·         Bath chair
• ·         Therapy balls
• ·         Stander
• ·         A lift
• ·         An electric feeding pump

Therapies received in home/frequency:

• ·         Physical Therapy – 3x weekly
• ·         Occupational Therapy- 1x weekly
• ·         Music Therapy- 1x weekly
• ·         Massage Therapy- 1x weekly
• ·         Speech therapy was discontinued because there wasn’t improvement

Therapy accommodations:

• ·         Multiple therapy balls varying in size and type
• ·         IPad for vision and audio stimulation
• ·         Vibrating pillows for comfort and support during positioning
• ·         Bone pillows for positions
• ·         Wedges

If Kamora has a full day of school then you can subtract the mid-day routine.  Otherwise this is our routine 7 days a week.

Jacobs Story Part 2

Jacobs Story Part 2

After Kamora was put in the hospital Jacob and his siblings were removed from the home and stayed with their maternal aunt while both parents were put under investigation on allegations of child abuse.  The children were returned home to me four days later as the father of the girls was arrested on child abuse charges.  Jacob was aware right away about what had happened to his sister.  Even at such a young age I believe he understood how serious it was.  I also believe that Jacob lived in fear because he recalled his sister’s dad yelling at Kamora A LOT when she cried and calling her bad names.  Jacob never reported seeing abuse though.  However, the yelling and name calling was scary enough for a now 4yr old boy who already had some underlying issues that I was trying to figure out through the past two years of weekly therapy sessions.  In the following months to come Jacob suffered a tremendous amount of stress for a 4yr old little boy.  With the relentless ongoing investigation and open case with the Department of Human Services the children were removed once again after 3 weeks of being back home.  Jacob and his sister Kolisa went to live with his maternal uncle and his family while Kamora went to a medically fragile foster care home and his oldest sibling Thomas was placed with his father.  That is where Jacob and his sister Kolisa lived for the next 4 months.  It was not only stressful for Jacob and his sister but for his Aunt and Uncle who had two children of their own under the age of four.  After the four months it was just too stressful and Jacob and his sister went to live with his paternal grandparents even though they were scheduled to be returned home in just two weeks’ time.  This move to the grandparents only prolonged their homecoming an extra 2-3 weeks from the original planned time.  But nonetheless they got to come home to me finally.  Shortly thereafter Jacob started attending a therapeutic daycare called The Kempe Center through Children’s Hospital for neglected and abused children.  Jacob attended Kempe Center for several months before starting 1^st grade at a local elementary school that had a BD program (behavioral development) which could meet his needs.  While attending Kempe Center Jacob was diagnosed with mood disorder, and anxiety, and PTSD.  I chose not to medicate Jacob at that time because I am one that just isn’t on board with medicating children.  Jacob also received a 119 IQ score while being tested during his evaluation at Kempe Center.  I was told repeatedly don’t worry about academics it will come to him.  He is smart and has the ability to gain what he needs (because he was behind in reading) and struggled with writing.  Focus on his behavior.  I was also told that Jacob not only was gifted but that Jacob suffered emotionally and that I would have to continue to monitor him closely that he would be prone to bullying in years to come because of his nature.  Once Jacob graduated Kempe Center he was able to go to public school in the first grade but had to be in a self-contained classroom with para support.  By second grade mom agreed to put Jacob on Medication to help him regulate his mood swings and anger.  The medication helped some but not enough.  He started to gain weight.  He became overweight and his behaviors got worse as time went on. Jacob also took a huge step of faith this year in second grade when he was 8yrs old by professing Christ as his Savior and following through with Baptism as a confession of that faith.  But even that wasn’t enough to really help Jacob with all of his emotional struggles.  By third grade Jacob had to be removed from public school and put into day treatment.  Jacob attended Mount Saint Vincent’s Day Treatment Program for 9 months where he got individual therapy, group therapy, family therapy with me, and continued his education.  In the fourth grade Jacob was ok to go back to public school in a self-contained classroom with para support again.  As well he received special transportation to take him to the school that could provide for his needs. He stayed at this school through the 5^th grade.  Fourth and fifth grade were really rough years on Jacob finding his way back into the public school setting.  There were many obstacles we faced with self-harm and visits to Children’s. There was a lot of transition with teachers in the two years at the school and a portion of this time there was another kid that bullied Jacob so bad that I am not sure he ever recovered from it fully.  In fact, I believe that it is a big factor in Jacobs’s current issues and problems with his behavior today and added to his PTSD.  But all in all he finished elementary and moved onto Middle school.  Through all these years Jacob continued to go to mental health therapy weekly visits and med evaluations monthly.  We tried a range of therapies but nothing seemed to work because we could never get to the root of anything due to always having to address current situations that were happening.  As well, Jacob has been receiving occupational therapy in home for the past 5 years to help with fine motor skills such as hand writing, keyboarding, brushing teeth, and skills of daily living.

In November of 2015 I finally had him tested at Children’s with a full psychological test, adaptive test, and another IQ test which was his 4^th one I believe and added to what is his list of diagnosis currently which were:

• Mood disorder
• Anxiety
• PTSD
• ADHD

Children’s added

• delayed milestones

Jacob has significant delays in many areas.  These have been overlooked over the years due to his high IQ.  But he suffers emotionally and adaptively.  His overall function is at a 5 or 6 year old not a 12 year old.  And it makes it really difficult to work with him because he is so smart but so far delayed emotionally.  He “looks” normal.  But he doesn’t “act” normal.  And kids tease him and bully him.  They think it’s funny to get him upset and let him spew over then look at him like there is something wrong with him.  Then tell everyone that he has “anger issues”  It really saddens me.

A List of Kamora's Surgeries and Procedures as of end of 2016

A List of Kamora’s Surgeries to Date

She is 8 as of Sept 2016

• G-Tube Placement
• G-Tube redone due to hemorrhage and had to be fixed
• Hip Surgery to fix her hips
• Hip surgery to take the Equip out
• Surgery to have Vagal Nerve Stimulator put in to control seizures
• Surgery to have Baclofen pump put in
• Problem with baclofen pump so they had to do surgery again to fix problem- then she developed a staf infection and diagnosed with presumed meningitis not knowing she had the infection and ended up with picc line for 4 wks.
• Surgery to have VEPTR rods put in her back to help slow her scoliosis down and prolong spinal fusion.
• I believe she had 4 or 5 more surgeries every 6 months to expand the rods as she grew until she was done growing.
• Spinal fusion surgery at age of 7
• Another surgery to take out catheter to baclofen pump and replace as her back never healed properly from spinal fusion and catheter was exposed to air and bacteria

Alongside these surgeries some were doubled and tripled up with other procedures at the same time to minimize how many times we put her under.  Here are the other procedures that were completed during some of the surgeries listed above.

• ·         Multiple Botox injections to finger flexors and hamstrings
• ·         Eye surgery twice
• ·         IUD put in to stop periods for precocious puberty

Kamora has routine appointments with each of her 6 doctors twice a year.  and as needed in between.  And she sees her dentist twice a year.