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!