IEP - transition

Today is the day of the IEP transition to Kindergarten and I wrote this letter to be used as a document providing some insight information for the new teacher and school aide about my awesome child.
Attachment to IEP-Letter to Paraprofessional/Aide

Hello!
My name is Sophie...

A little background information about my condition:

I weighted just two pounds when I was born. I was premature and spent three months in intensive care at the hospital before I was allowed by doctors to go home. I went home on a heart monitor which I wore 24 hours/7days a week for several months. The machine alerted my parents if my heart stopped beating so that my life could be saved. Fortunately, my heart problems resolved in the later months before I turned one year old and then I was diagnosed with cerebral palsy, CP for short.

CP is a neurological condition that affects my body and daily living in several ways. In my case, CP causes muscle spasticity which results in some impairment of certain motor skills such as the ability to walk.

Spasticity: A condition in which certain muscles are continuously contracted. This contraction causes stiffness, tightness, and sometimes even involuntary movement of my legs and hands.

Due to CP:

1- I CANNOT walk, kneel, stand, or sit independently without support.

2- My muscles are much weaker than those of other kids my age.

3- At times I may drop items on the floor unintentionally simply because my hands get tired.

4- I do not enjoy most foods so my mom packs my lunch everyday which always includes a nutritional shake (known as BOOST). I drink it with a straw because it is much easier for me. Covered drinks are best for me and can help to avoid unnecessary stress and cleaning due to spills. I do not like to be forced to eat.

5- I also need help opening and closing bags, containers, etc...

Due to my limited mobility I need help reaching for items on the floor or otherwise out of my arm's reach. Items can include, bottles of water, lunch, pencils, crayons, paper, books, etc...

I am 100% dependent on someone for my mobility. What does this mean?

I need someone to help me:

1- Get into and out of my wheelchair.

2- Carry me to the toilet.

3- Get into and out of chairs and playground or other equipment.

4- Clean up items out of reach such as on tables or floors.

When I feel happy or scared my muscles may become spastic. My legs may stretch out involuntarily and I will need help getting my feet properly placed back on the footrest.

Sometimes I slide to the front of my seat due to spasticity so I need help or to be reminded to slide to the back of my seat to feel comfortable and maintain proper posture.

It may be tempting to adjust my chair or other assistive devices to make improvement, however not adjustments or additions can be made to my wheelchair or devices without written authorization from Mom, Dad, Therapist, and/or Doctor. Everyone of my devices and each piece within them is custom made for me by medical professionals and cannot be altered without consulting one of the people above mentioned.

Sometimes I become scared and need positive encouragement. I thrive on positive encouragement because I am a happy girl.

My Moto:  "EVERY DAY, IN EVERY WAY, I AM GETTING BETTER AND BETTER".

My parents' and doctors' goal for me include increasing my self esteem and independence in order to become a successful and independent adult in the future. Please do not exclude me from activities that other kids my age are enjoying. Instead, look for ways to adapt those activities to my abilities and increase my success. Do not tell me that I CANNOT do something because of my disability. Instead, look for alternatives that could satisfy my need for adventure and to have fun.

I am very smart and CAN/SHOULD follow school rules. These rules may include staying quiet when necessary, taking tests, writing, reading, playing, and sharing toys with others.

I am as NORMAL as any other child and I have never been told otherwise by parents or anyone else. I am NOT sick and do not like being called disabled. I enjoy being read, coloring, and talking up a storm about all that is going on in my amazing imagination. In my mind, my possibilities are endless. In my mind I CAN and WILL become anything and everything I desire.

Shriner's Hospital for Children in Tampa, FL

Contrary to what many people believe, individuals with disabilities do not automatically qualify for monetary benefits and/or Medicaid (no cost medical coverage). We are a family of five with one income earner, and believe me when I tell you that our monthly income is just enough to cover our expenses. Our child is one hundred percent dependent on others for care and mobility, and yet, she does not qualify to receive medical care through Medicaid or any monetary benefits at all. Thankfully we do have private insurance, which we pay for (over $500 monthly, in Florida). Our insurance does carry very expensive deductibles for assistive technology and basically all the equipment that is absolutely necessary for my daughter. For example, I was quoted $950 (out of pocket) for orthotics (AFO's) that she absolutely needs. We were not able to cover that cost at the time, which is why I began to research and look for help. This is when I found Shriner's Children's Hospital. I am sure you have heard about them on TV. They help kids like mine get what they need at no cost to us. Unfortunately, they are located four hours away, but the trip was definitely worth it for us. Through Shriner's, we have been able to obtain a wheelchair and orthotics, that my daughter desperately needed. We were not charged a penny for these items, thanks to donations from various organization and even regular people like ourselves! The service at Shriner's is really great! The physical rehabilitation doctor was the best we have ever seen. He was very knowledgeable in the diagnosis of cerebral palsy and was very much pro SDR, which is always great (if you are a parent of a child with CP, you know what I mean).

At Shriner's Children's Hospital, Tampa, we were able to do in just one day, what usually takes months in South Florida (at Joe DiMaggio's Children's Hospital) and the best part: we did not have to pay anything at all. Sophie was able to be seen by the Orthopedic and physical rehab doctor, and get the equipment necessary. The Physical rehab doctor even understands our insurance situation and worked out a plan with us to come visit every other month to have Sophie evaluated for Physical therapy and see her improvements. We have been on a hiatus from private therapy due to lack of insurance coverage, so the physical therapist at Shriner's will make a plan that we can follow at home and then revisit every other month.

I highly recommend visiting and donating to Shriner's Children's Hospital. They have been a life saver for our family.

Selective Dorsal Rhizotomy - A whole new body

For  four years I have been researching and investigating about SDR (selective dorsal rhizotomy) a procedure that, according to parents, changes lives. Follow on  #sdrchangeslives
I read the facts, the success stories, and saw the videos. I was convinced that SDR could change our lives too!

We finally decided to schedule an appointment to see a neurosurgeon at the local children's hospital. We contemplated going to St. Louis to have the great Dr. Park evaluate Sophie but with three kids and a small budget, that was going to be a very difficult task. I was feeling somewhat guilty for not going above and beyond in order to get Sophie to St. Louis but then somehow I convinced myself that it was best to find a local option and fast. At last, I decided that it was best to stay in town if I I could manage to feel comfortable with our local doctor. We saw Dr. Hertzler about six months before deciding to do the surgery. If you are considering this surgery for your child, please do not delay. I wish that I would not have waited this long.

So back to the story... Sophie was admitted to the hospital at 6 a.m and provided a gown and glass slippers upon arrival. ok, just kidding, just some plain green, hospital socks. By this time, I had gone into a little trance I that usually put myself into when things are about to get tough. It is like a natural drug that my brain manufactures so that I can endure difficult situations. As soon as the nurse began to work with us for height, weight, etc... she realized that this girl was no ordinary child. She immediately became the talk of the nurses and doctors who were slowly getting to know her. She began to tell everyone about her twin sister who passed away. She also spoke about how much she wished to be a ballerina and that the reason that she was having selective dorsal rhizotomy, and yes, she said "selective dorsal rhizotomy" and she knewexactly what that meant. Her vocabulary left everyone in awe. Although she was just four years old, she reads like a first grader and speaks two language fluently (English and Spanish). She can also say many words in phrases in French and Russian. How is this girl so smart? you will have to read my next post about how I took my daughter's brain development into my own hands!

So what does this mean for a child with cerebral palsy diplegia or quadriplegia? During the rhizotomy, a neurosurgeon selects nerve roots that are causing spasticity and cuts them, removing spasticity forever. Sophie was diagnosed with quadriplegia, although she has always had good use of her hands and arms, because "some spasticity" was present mostly in her left hand. Her left hand was fisted for probably the first two years of her life. She improved that greatly with the Anat Baniel Method (RESEARCH ANAT BANIEL METHOD)  that cost us an arm and a leg (thankfully paid through fundraising).

So... around 7am, the nurse started some meds that were intended to make Sophie drowsy. Then, she was almost asleep, she was taken inside to the operating room and next came what would be the longest four hours ever!

At about  noon, the doctor came out to give us the good news! The surgery was a success and Sophie was doing very well. The doctor told me that her lips might appear swollen because she had been on her belly for the length of the surgery. I was called in to see her. She was still asleep when  walked into the recovery room. She was lying on her back. I looked at her lovely face and her closed eyes. I did was most parents probably do after a surgery like this. I uncovered her feet and tried to bend one of them. All her toes were now relaxed. Her feet had the ability to bend back without bouncing back like they had springs inside of them. I felt like a miracle was happening right in front of my eyes. After so many years of seeing these two little legs, always stiff, always in pain, I began to see all the possibilities that would now become a reality for my daughter. And she was still asleep, just about an hour after surgery and her life had changed, our lives had completely changed.

Recovery was much easier than I imagined. Sophie was so brave, she did not even cry once. The key was making sure that she received pain making exactly at the right times. The first three days, she was on morphine. By the fourth day, she was on alternating Tylenol and Ibuprofen. She was so good taking her medications, so different from we are at home. After surgery, she was transferred to the Intensive care unit for twenty four hours, then to the rehab floor.


To be continued...

Diary of Baclofen - started at 3 years old - DX Spastic Cerebral Palsy

Today we gave in. At three years old, we have finally decided to start Baclofen, given orally. We gave the first dose of 2.5 (1/4) tablet dissolved I water and this will be the dosage for the first week. The second week, we will go up to two dosages per day. Her doctor say that it should help with:
-pain and spasms while sleeping due to spasticity.
-Better muscle control
-Maybe sit better.


I will document all about our journey with Baclofen.


Stay tuned....


Update#2- two weeks into Baclofen
Dosage- morning and night 2.5 each time.
Changes- very slight changes, legs re less stiff, slight changes in sleep pattern, no longer complains about pain at night.

Final update- Baclofen did not work! The side effects were awful (weakness all over her body) moving on to SDR... No matter if the rehab doctor thinks it will not work.