We want to thank everyone who helped us out with Tegan's
fundraiser for her new stroller:)  We cannot believe the support we received for Tegan through this!
Even though, Tegan cannot speak, when she sees her new hot pink
stroller for the first time, she will be grateful as well!
We will post photos when we get it!!!

THANK YOU!!!!!!!!

Everything Tegan Has Gone Through

Tegan has definately gone through alot that no child should have to, but after meeting other families, I really consider us lucky.   We spent alot of time at the Children's Hospital, but when you meet other patients and their families you realize it could be worse. 
However, the feeling of "realizing it could be worse" didn't come right away.  I can say it now, but it has been a long road to be this optimistic.  Actually, I was quite the opposite after she was born and never in a million years thought I could raise a special needs child and love it as much as I do today.

Tegan had to go through all the testing.....Genetics, Metabolic, EEG'S, Lumbar Puncture, ect..
She was diagnosed first with Temporal Lobe seizures, but then after bringing her home and researching her seizures I thought they looked more like Infantile Spasms.  Sure enough, I was right.  Now Infantile Spasms sounds pretty mild, but they are in fact the worst form of Epilepsy.  We thought Tegan was having 2-3 seizures a day, but actually she was having more like 50 a day when you count the "clusters" in each episode. She was diagnosed around 3.5 months with IS, but looking back I believe we may have missed seizures earlier on.
IS in itself does not have a great prognosis. It depends if the seizures are Cryptogenic(underlying condition suspected but not known), Symptomatic(known cause), Idiopathic (no known cause).
Tegan was considered Cryptogenic which doesn't give the greatest prognosis:(
We were very lucky and got control of the seizures when she was 7 months old.
I had hoped she would just play catch up now that she was seizure free, but she didn't.  Her progression was moving along at a snails pace, and sometimes would just stop all together.

I pushed for therapists when she was very young.   She started recieving PT and OT when she was 5 months old.  Speech therapy was added at 12 months old.
Tegan did not sit up until close to the age of 2 years old....this was HUGE!!!  I never thought she would ever be able to sit up on her own due to her extremely low muscle tone.
She eventually figured out how to "bunny hop" around 2.5 years old.
We did recieve a "severe" autism diagnosis shortly after her 2nd birthday, but that was only part of what was going on and I also think the Autism diagnosis was given to help us get more services and funding for her.

I noticed she began "hand mouthing" alot around 18 months, we just chalked it up to teething.  It became quite excessive though, and just was not a habit we could break.  I did come across Rett Syndrome a few times while researching her symptoms.  However, because typical Retts girls seem to develop normally for the first 6 months to a year of life, I ruled RS out for Tegan.  I didn't think she ever developed normally.
As months went by, she started showing more of the typical signs of Rett Syndrome.  Not only was I suspecting this, but her Neurologist kept going back to RS aas well.
She was tested for MECP2, which is one of the genes associated with Rett's.  This test came back normal.  So we were left with nothing...again.
I gave up on the Rett's research for awhile, but Tegan, yet again, started showing more symptoms.  More of the hand movements such as hand wringing, she had tiny, cold feet, non verbal, low muscle tone, bouts of hyperventilation, teeth grinding, ect......the list goes on
I started video taping all these things and sending them to her neurologist, after all he only sees her 10 minutes every few months.  I wanted them to see what I saw every day.

This time, we recieved an "official letter" saying that Tegan definately fits the Rett's Spectrum.  There will be more genetic testing to come to find the exact gene causing this. There are aypical forms of Rett Syndrome such as CDKL5, which Tegan has not been tested for as of yet.  Rett's is also a spectrum disorder, so all the girls can present differently.  The prognosis varies, but alot of the girls will remain non verbal and do not walk.

Miss Tegan will turn 4 next months.  She is unable to stand, completely non verbal, cannot feed herself or drink from a cup.  We are working very hard with her, and we are seeing small things here and there.  She recieves 20 hours of in home therapy per week!!! Plus she attends pre-school 4 morning a week ( which she LOVES!!!)

Here is the latest milestone from Missy!!  It may not seem too huge, but we have been trying to get Tegan to realize she can use her hands to feed herself for years!!! She just started making a HUUUUUGE mess by dipping her fingers in food and having a taste:)  Yaaaay Tegee!!!!  She is just so darn cute!

In the Beginning

Alot of people ask when we realized something was wrong.  This is a loaded question because I had pegnancy problems, which may or may not have been related, as well the labour did not go great.  So I had an uneasy feeling even before she was born.  After having 3 kiddos already, that motherly instinct kicks into overdrive and I think you just know.  After Tegan came into this world....it really started to sink in.  Tegan never cried.  She never cried at birth, and she never cried once during the short 24 stay at the hospital.  Actually we did not hear a peep for the first few weeks...nothing.   I had people telling me she was just a really good baby and that I was going through some sort of post partum paranoia, but I'm sure glad I never gave up on trying to convince any and every doctor I could!  As a mom....you just know something is not right...trust your instinct!

Every little thing Tegan did or didn't do I googled.  Now this can be a horrible thing to do, but I'm the type who wants to figure things out for my kids instead of waiting around for a doctor to tell me I'm right....
OF COURSE I'M RIGHT!!  I am her mother!!!!
I spent any free time researching symptoms....first thing I came across was Cerebral Palsy, then Autism, then Mitochondrial disease, and the list goes on.  I would watch videos of other babies who had already been diagnosed with these things and look for similarities in our baby girl.  I drove myself crazy, but I was determined and wanted to start preparing my family for what was to come.
Tegan would sleep in super awkward positions and arch her back all the time..(as she go older this common back arching would become a horrible, but kinda funny, mocking of something out of the exorcist. After all at some point you need to stop crying and just laugh!)

At her 6 week check up I was given a very vague comment of "you know..you might be on to something" when I asked about Tegan showing signs of Cerebral Palsy.  That was it, the doctor left the room and told us to come back when she was a bit older.  I will never forget that day, but won't go into detail about the emotional wreck I was.
 **My book    There is waaay to much detail about how you feel that I don't feel comfortable sharing with the world online, so I decided a few years back I am going to write a book.  I wish I had a guide book on feelings that you may experience when you are thrown into the world of special needs.  Like a "What to Expect When You are Expecting..and Then Find Out What You Thought You Were Expecting Is In Fact Going to be Completely Different"  .... pretty long of a book title though:)

With that being said I think this is a perfect place to quote this awesome and so true poem.  I painted this poem on a giant canvas and have it hanging in Miss Tegans bedroom...LOVE IT!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tegan's story so far....