Yes! Tegan has recieved a awesome wish from Make A Wish! We have known for awhile but it just seemed like one of those things to good to be true, thus to good to share until we knew it was really, really happening! In fact, it seems soooo too good to be true, that I had a super weird and horrible dream about it. In my dream, we boarded the plane to Disney, and when we got to the airport everyone just started laughing at us because we actually thought it was real! Awful!!! Tegan had her Make A Wish reveal party a week ago ( this was the super cute cake the super duper wish grantor brought).
Make a Wish goes above and beyond. This process has been more than I would have ever expected and I feel so lucky and unbelievably blessed to be able to go through this. Not only does Tegan get to take us with her to Disneyworld. Seaworld, and Universal...but all the kids have recieved super cute gifts along the way. We also recieved a Make A Wish bag full of little numbered boxes for the kids to open every day, to countdown to the trip:D
A huge thank you and hugs go out to Make A Wish, and to our Wish Grantor, Krista! Thank you!
My next post will most likely be after the trip!!! Here are some pics from the Make A Wish party:
This is being posted a bit late.....but it is just soooo cute and very worthy of it's own post! Tegan's fabulous aide, Carolyn, was asked to have photos done for our local college program guide....and she asked Tegan to be the one to be in the photo shoot! I was sooo excited and as you will see in the video, so was Miss Tegan.
It was so cute, I almost teared up watching how happy and squealy she was in front of the flashing camera lights(plus, I think she had a little crush on the photographer....what?! did I say that??? ) :D :D
Anyway, here is Tegan's very first shoot....and I am so excited to see the actual pictures and see them published this fall:) I will post the pics as soooon as I have them in my hands!
Thursday, August 8, 2013
As many mamas of kiddos like Tegan know, it is not that easy to find something Tegan enjoys as well as the other kids. Tegan's interest change daily it seems, and due to her sensory issues I am always scared to try anything new. If Tegan doesn't like something, the entire family will have no choice to go along with Tegan because the scream that can come out of this girlie is somthing else! So when I took the kids to my family reunion and my brother had a hotel with a waterslide, I had no choice but to try this new adventure out with Tegan...and as you can see by the picture...it was a definate hit!! Amazing...something to add to our list of things we can do without Tegan freaking out...Yipppeeeeee! I actually couldn't believe how much she loved the waterslide, I was so happy for not only her, but the rest of the kids as well. Doing the stairs up to the slide was a whole other story...my legs were like jello at the end of the day, not to mention the "claw" marks on my back from Tegan trying to let me know that she DID NOT want to stop watersliding:) I have to say it was actually the best day I have had with the kids, and was so awesome to see Tegan's laughs, giggles, claps, and shrieks doing something with her brothers and sisters! Definately putting this on Tegan's list of things to do:)
There really is no maaaajor point to this video...at all:D I just think Tegan is so super cute, especially with her one of a kind, crazy bed head in the mornings....actually what am I talking about, she really rocks this hairdo during the day as well!
I had to share this! I am super proud of my 10 year old Brandon who was chosen to throw the first "lucky" pitch at our Bulls baseball game last week:D
He did amazing! It is hard to see but if you look really close you will see he threw awesome! Better than I could of done that's forsure!
Brandon has been a little choked because I have not posted about him on my blog yet, well here it is Buddy! Super proud of you!
Music Therapy with Taylor Swift...performed by Missy's music therapist
Tegan started music therapy at school this year...and she did amazing! I have to say Music Therapy is my favorite approach with Tegan. She just loves music and her attention span goes way up if we have music playing during the day.
Of course, it all started with Taylor Swift when Tegan was 3 months old. I have to say Taylor is definately her favorite still but she is expanding her likes to typical kids nursery rhymes and classical as well!
I had her MT come in for some one on one sessions this week, and Tegan did amazing! Plus, there was a extra surprise..."We Are Never Getting Back Togther" by Taylor Swift. Tegan recongnized the song forsure.
You will notice her "non verbal cues) when he stops playing, she whips her head around and the eye contact is awesome:) Also if you really pay attention, you will see when she spins the drum, she will do exactly 5 times each way......you are so soooo smart girlie!
Thursday, July 25, 2013
Taylor Swift , Missy T, and Uncle Shawn
Too cute...went to visit family on the weekend and Tegan couldn't get enough of Uncle Shawn. She followed him around and went bunny hopping to find him when he wasn't in the room...if only Uncle Shawn could of got her to sleep! Tegan does horrible away from home overnight, but Taylor Swift and Uncle Shawn made the next day a bit better:D Another Taylor Swift moment for Tegan..not sure what we would do without Taylor!!!!!!!!!!!!!!
Tegan's First Diploma
I am a little late to blog about Tegan's awesome
first year at pre-school, but here it is...her very first diploma!!! Sooo cute!
This really makes me realize how far we have all came through all of this. The past 4 years has been a huge life lesson. Tegan has taught us all so much. Tegan was a mega hit in pre-school that's forsure:D
All her little classmates would jump at the chance to push Tegan in her stroller or help out in any way possible. I love how innocent and non-judgmental little ones are!!!!! Everyone loves Tegan for who she is and that is all I could ask for.
At the start of the school year, both the staff and myself were a little worried as to how it would work out. Tegan loved to bunny hop around the classroom and be the free spirit she is, so we were a little unsure how safe this would be with a bunch of 3 and 4 year olds running around.
Tegan sure showed us!!! She owned that classroom! LOL She soon found her "nitch" and knew exactly what she can do, and the other children learned this as well. Some mornings Tegan would bunny hop into the classroom as the other kids walked in...super cute I must say. Tegan absolutely LOVED pre-school, and days she missed we could definately tell she was wanting to get right back in there.
The staff....YOU ARE ALL AMAZING!!! I could not ask for more for my Miss Tegan. From the very first day I walked out of the classroom, I knew Tegan was in excellent hands. Thanks you so much, MIss Jill, Miss Deb, Miss Denise, and Miss Gail...you are all amazing:)
A Tribute to Miss Denise
Miss Denise was Tegan's primary assistant. It was definately the little things that made me realize someone else really cared for my special needs child like I do. I look back to the beginning, and remember the hard times I had accepting my new life raising a special little girl. I then wondered what school would be like for and didn't think anyone else would accept and love Missy for who she is.
Miss Denise was more than an assistant to Tegan, she as/is a huge part of who Tegan will become. It really is the little things, like when I opened Tegan's backpack...the cute little crafts that Miss Denise helped Tegan make. It made me so happy that Tegan was experiencing what every other pre-schooler does.
One day, Tegan picked up a brush clumsily and awkwardly placed it on her head. I soon found out this was something she picked up at school, while joining in styling barbie heads with the other girls:)
Miss Denise didn't at all mind Tegan's slobbery little hands, and gave her a kiss at the end of every day.
You made Tegan's first schol year amazing and comortable for all of us. Thank you.
Yes....Taylor Swift. You may be wondering why this post is about Taylor Swift. Well, it's because Tegan absolutely loves her! Ever since Tegan was a baby, her music calmed her like nothing else. When Tegan began having seizures, the only thing that would calm her down after was listening to Fearless by Taylor! It was seriously amazing to see this. It never stopped there, Tegan soon recognized other songs by TS, and the music became part of our daily routine.
Therapists who worked with Tegan soon realized if they played her music (mainly Fearless) , they would get way more out of therapy sessions. Tegan will even stand briefly with her leg braces on if she hears the familiar voice:D
Tegan also receives music therapy, and we even had her therapist attempt to play Taylor's music on his guitar.
With all this being said, I am trying very hard to have Tegan meet Taylor Swift one day....I am on Twitter, I am emailing the Ellen Show, anything and everything!!!! I am going to keep trying to have this story heard because it is truly amazing what her music does for our non verbal little girl!
Miss Tegan cannot speak so its my job to make all her dreams come true...and she has her own way of letting us know that this is one of them!!!
So after years of saying I don't need help to everyone...I finally caved. Five kids including one with special needs is very rewarding and I love it, but it is also unpredictable and chaotic! There are mornings, that I tell my hubby to swing by the Mental Health unit and grab me on his way home:D.....but then again, I don't even have time to shower alot of days, let alone go visit Mental Health.....okay so I am exaggerating a teensy bit.
Aaaaaanyway.....where we are I consider us very lucky for the services we recieve to help with Miss Tegan. I can't really complain about much there. So I asked if there was any way we could recieve some in home domestic support...and YAY....we now recieve a generous amount of hours to help out.
So, I went and found a Supermom who also wanted to earn some extra cash. Trish has 2 amazing kids of her own, who also have some special needs, so this mom knows where I am coming from:D
I met her through the kids school and she is the perfect blend of what my kids and I need. This picture she took while I had my oldest at soccer and the mall for some girl time tonight explains it all......
May not look like alot is going on here....well....EXACTLY my point! This
woman is amazing!!!! My kids are never all sitting in a perfect little line,
beside each other, having snack, watching a movie. It just doesn't happen...
EVER! We came home from the mall, kids were fed, changed diapers, bottle
given, house clean, and cookies made. HEAVEN I TELL YOU!
I don't know about you, but I love the giggles that come from kids! Especially the belly laughers...it makesmy day even more when the giggle is coming from a special needs kiddo:D
Tegan is usually giggling at everything, and her laugh is so crazy cute I had to share this video I caught after grocery shopping with her.....it all started when I accidentally pushed the wrong button when unlocking the truck and it made that loud beep when it is locked...apparently I found Tegans new favorite thing to do!
I am sure there were people getting really annoyed with the continuous honking, but I really don't care...because Tegan was "uber" happy and that is all that I care about:D
It is crazy that I think this way now, because when I first knew Tegan was special needs one of my main concerns was the possibility of being embarrassed if she was loud in public. Now...I say BRING IT ON!!!
If you don't like her giggles and shrieks, I will probably just get her to be even louder..cause that is just the kinda proud momma I am!
Mackenzie is the oldest and is a HUGE help to our family, especially Miss Tegan.. THANK YOU KENZIE!!! Anyway, here is one of her most recent videos she made with all the kiddos...inc. Tegan:)
It is pretty darn cute I must say.... Enjoy!
I wanted to do more this year for her birthday so we had a typical 4 year olds birthday and invited her friends from pre-school. We may have over did it, but Tegan was definately more aware this year that this day was for her!
Looking back at her birthdays so far, we see how far she has actually came....she continues to amaze us every day by the new things she is learning:)
WE LOVE YOU MISSY T!!!
I am a bit of a slideshow junkie as you will see.....so here is a little tribute for the Birthday Girlie!
Wednesday, April 17, 2013
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!!!
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!
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.
Yes! Tegan has recieved a awesome wish from Make A Wish! We have known for awhile but it just seemed like one of those things to good to be true, thus to good to share until we knew it was really, really happening! In fact, it seems soooo too good to be true, that I had a super weird and horrible dream about it. In my dream, we boarded the plane to Disney, and when we got to the airport everyone just started laughing at us because we actually thought it was real! Awful!!! Tegan had her Make A Wish reveal party a week ago ( this was the super cute cake the super duper wish grantor brought).
