Prep for Melia's Party...

So I had this idea to make a memory matching game for the take home gift for the guests at Melia's birthday party... aka: her cousins. I knew Sherilyn had made one using cork and pictures of family members but since her party was a Tangled theme I wanted to do one with Rapunzel pictures.

I went to Rona looking for some cork, or small wood squares when I came across the peel and stick laminate tiles... LIGHT BULB! I bought 4 for $0.79 each.

So I went to the Disney Tangled website and picked out some pictures and took screen shots of them. They don't have to be super good quality since the squares will be small.

*to take a screen shot on a mac hold shift, command 4*

then I cropped each photo to a 2x2 square since my tile was 12x12 that meant I could get 36 pictures on each tile. Then, I printed it on heavy weight matte epson paper.

*I pressed the scale to fit button so my final squares were actually a bit smaller than 2x2, next time I wouldn't push that*

I trimmed the excess white area and lined up the photos to see how they would fit on the tile.

Then I peeled back the paper and lined up the pictures with the edge of the tiles and pressed it down.
Then, taking a utility knife and ruler I cut down each column and then cut each individual picture out. It took about 4 cuts to get through the tile.

It took about 4 hours to make 4 sets of the games, though if I were to do it again I bet it would only take about 1.5 hours from finding pictures, printing, sticking and cutting.

and that would be for another set of 4 games, if I were to do just one set I bet it would be about 20 minutes.


This whole project cost me about than $10. $3.50 for the 4 tiles, I already had the matte paper and ink... But I had to buy the utility knife since I didn't have one yet. So if you already have a utility knife and wanted to make 4 sets it would be less than $5!!
Next time I would coat the photo side with modge podge or some sort of durable glaze just to protect the pictures but I ran out of time and energy :)

Here is a printable 8x10 of the photos I used for the game, for each set just print 2 copies of this file and get started on your memory game.

A few make overs...

So a few months ago I started painting this dresser for Owen. It sat in my front room for a looooong time needing just a few coats to finish it and some new hardware but I just didn't have the energy or time... okay, I had the time just not the energy!!

anyways here it is...

I also painted and fixed up this clock

Lake Day...

On Thursday August 4th we had a fun day filled with sun and sand...

The kids building or digging something

Owen Chilling with Grandpa

Melia is the little orange swimmer

Always happy!


Taylor giving Kaycee a foot rub- what a good husband!

One tired little girl!

A Few More Vents....

The first of our three EEGs was only about an hour and Melia screamed the whole time they were putting the probes on her head. It took both cam and I to hold her down. that was hard, because now both of us had to see her pleading, fearful face wondering why we were doing this to her. Then cam held her as she fell asleep in his arms since we had to keep her up until 10 pm the night before and wake her up at 4 am so that she would be sleep deprived for the test. I hope we get some results that will explain something... anything.

a few weeks later i went into labour and many, many hours later little Owen made his appearance. Ten fingers, ten toes, my perfect little boy and part of me aches thinking what if... Melia was just as perfect. What if... I have to stop thinking this way, but it always creeps into my mind that this could happen to him too. if it does, I'm definitely done having children. Late at night while I am feeding him, I cry some more. I’m tired and scared and just keep praying that he will be healthy and maybe, just maybe he can teach Melia to talk while he learns. Wishful thinking I guess.

Melia loves her little brother. maybe too much! she cant stop kissing and hugging him and has completely forgotten about her baby doll that used to go everywhere with her. who needs a doll when you've got a real baby, right. I'm a little afraid that she is going to love him to death one day and so i really can’t leave her alone with him.


We bought Melia a trampoline. it’s a small 5’ around one that is up in her bedroom. Saying she loves to jump would be an understatement. we’ve already had her jump through one crib mattress, literally. springs poking out and broken off. One day she woke up at 5 or 6 am, and jumped until 7 when i got her out and took her downstairs for breakfast. after she was dressed she climbed back up to her room and screamed and cried at the side of her crib until i came up and put her in so she could jump. i came up a few times to bring her down but she wanted to stay and jump. i brought her down for lunch and right after she was headed back up. she jumped again until she fell asleep for her nap then woke up and kept jumping. i got her downstairs for dinner and yet again, right after she wanted to be back in her bed and jumped until about 10 pm that night. She literally jumped for about 12 hours that day. i cant help but think she is going to have amazing legs!!
the trampoline is in my living room now. she loves it. i love it. and owen loves to watch her jump.


we got called into the neurology department to discuss the results from Melia’s EEG. turns out that she has seizure activity in her brain. So...? does that mean she is having seizures or what? My pediatrician said it meant yes, but the neurologist says its the potential for seizures... whatever that means! but they also said they need more testing so we will have to come in for a day long EEG. Great, so with my little newborn I need to spend a minimum of six hours in a little room with Melia hooked up to a machine so she cant move very far and take care of Owen? thank goodness for my grandma who took owen for me so i could focus on Melia and thank goodness i had pumped and had a store of milk in the freezer for him.
so from that test we figured out that what i thought were seizures, staring and unresponsive for about 30 seconds, were in fact not seizures? so when were the seizures happening? I'm so frustrated. and again, no answers.


They are looking into the possibility of Rett syndrome. Not cool. After googling it i got sad again. I don’t like the looks of this disease, yet it seems like it is the best candidate for all her symptoms. “Rett syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use.” It is usually only found in girls and can be misdiagnosed as autism or cerebral palsy. That lessened my fears slightly until I read that in very rare cases it has affected boys who either die in utero, as an infant or at the very latest before they are two years old. Please be healthy Owen!
The more i go back and read about Retts the sadder I usually get. Some of her symptoms obviously started around 18 months but some of them are still showing up as she gets older. I really hope she doesn’t lose the use of her hands and legs. My little girl loves to jump and swim and as long as she can do that I know the quality of her life will be good but if she looses that, I don’t know how she will feel already trapped in her head and then her body? It makes me feel helpless and I usually have to stop googling or even thinking about it for a long while so I don’t become over burdened with sadness. I’ve also read that a good number of little girls affected with Rett syndrome will just suddenly die due to seizures, or gastric perforation, heart problems or a few other things. Oh great, another thing to worry about on those rare days that melia sleeps in my brain automatically jumps to- She could be dead in there. I need to stop googling!


new baby. no sleep. no answers. running from appointment to appointment. Turns out I'm in the 80%.

A Long Time Coming...

On Wednesday August 3rd my world changed forever. We got our diagnosis.


Rett Syndrome.



What is Rett Syndrome? (from http://rettsyndrome.org)
Rett syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

Rett syndrome has been most often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay

Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 200 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.”

Rett syndrome strikes all racial and ethnic groups, and occurs worldwide in 1 of every 10,000 to 23,000 female births.

Rett syndrome is a developmental disorder. It is not a degenerative disorder.

Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome symptoms appear after an early period of apparently normal or near normal development until six to eighteen months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements such as handwashing, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns while she is awake. In the early years, there may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, but in general, irritability lessens and eye contact and communication improve.

Rett syndrome is confirmed with a simple blood test to identify the MECP2 mutation. However, since the MECP2 mutation is also seen in other disorders, the presence of the MECP2 mutation in itself is not enough for the diagnosis of Rett syndrome. Diagnosis requires either the presence of the mutation (a molecular diagnosis) or fulfillment of the diagnostic criteria (a clinical diagnosis, based on signs and symptoms that you can observe) or both.

Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of her mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different.

Rett syndrome presents many challenges, but with love, therapy and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.

Calaway Park take two...

On Wednesday my whole family was finally in town so we all went (minus Jay and Denver since they were working) to Calaway Park. Grandma Pilling, Jodi, Kathy and Kaewynn also came with us!

It was kind of a gong show day, albeit, a fun gong show day.

We had lots of fun going on rides and visiting. Jolanda surprised us by showing up 5 months pregnant!! I can't believe she kept that from all of us for so long!

Jodi, Kathy. Mckenna and I went on the log ride. Mckenna was quite timid about going on it but when I offered her $1.00 she was all aboard! I doubt I will get her back on any time soon though, she was hanging on for dear life and was quite scared, but I secretly think she had a good time!!

A good time!!

A Little Bit Stronger...

By Sara Evans (love this song!)

Woke up late today and I still feel the sting of the pain
But I brushed my teeth anyway
I got dressed through the mess and put a smile on my face
I got a little bit stronger

Riding in the car to work and I'm trying to ignore the hurt
So I turned on the radio, stupid song made me think of you
I listened to it for minute but then I changed it
I'm getting a little bit stronger, just a little bit stronger

And I'm done hoping that we could work it out
I'm done with how it feels, spinning my wheels
Letting you drag my heart around
And, oh, I'm done thinking that you could ever change
I know my heart will never be the same
But I'm telling myself I'll be okay
Even on my weakest days
I get a little bit stronger

Doesn't happen overnight but you turn around
And a month's gone by and you realize you haven't cried
I'm not giving you a hour or a second or another minute longer
I'm busy getting stronger

And I'm done hoping that we can work it out
I'm done with how it feels, spinning my wheels
Letting you drag my heart around
And, oh, I'm done thinking, that you could ever change
I know my heart will never be the same
But I'm telling myself I'll be okay
Even on my weakest days,

I get a little bit stronger
I get a little bit stronger

Getting along without you, baby
I'm better off without you, baby
How does it feel without me, baby?
I'm getting stronger without you, baby

And I'm done hoping we could work it out
I'm done with how it feels, spinning my wheels
Letting you drag my heart around
And, oh, I'm done thinking that you could ever change
I know my heart will never be the same
But I'm telling myself I'll be okay
Even on my weakest days
I get a little bit stronger

I get a little bit stronger
Just a little bit stronger
A little bit, a little bit, a little bit stronger
I get a little bit stronger

Calaway Park...

Yesterday Melia, Owen and I went to Calaway park with my sister in law, Sherilyn and her 3 kids. I was very nervous since last year when we went with all my family I was nearly in tears the whole day. We were just in the thick of Melia's regressing and just starting to think there might be something wrong- but I was definitely still in the 'I must be a bad mom' stage and wondering why my daughter loved to beat me up.

So I really didn't know what to expect and was mentally prepared for Melia to scream, bite, and freak out but I wanted to try since next week we will be going again with all my family again.

This was going to be a trial run of sorts and you know what... It was surprisingly successful!!

I was amazed at how well she did. That does not mean in any way that we did not have freak outs and tears and even a bite first thing that still has yet to fade on my arm!

But it means I didn't cry! I made it through the day and we actually had a good time!

Melia loved the swings

Mckenna was such a wonderful helper

The boys just hanging out in the strollers

Mmmmmmm cotton candy!

some more...

i’m tired.

somedays its all too much. somedays she's too much. somedays I cry all day long. somedays I feel numb. somedays I ask why me. somedays I know why its me.

But everyday, every single day, I am grateful and thank my father in heaven for sending me this beautiful, smart, determined, frustrating, exhausting, wonderful little girl. Sometimes I just have to remind myself of that.

I've been watching Parenthood. I love that show. I started watching because of the little boy with aspergers before we knew what Melia... I guess, what she didn't have.I just watched this episode where they mentioned that the divorce rate of parents with children who have autism is 80%. I bet that translates to any disability. I keep thinking, I really hope we are in the 20% but there’s a nagging in the pit of my stomach that says that if we are its going to be a hard run. Stress adds a lot of, well, stress to our lives and there is a lot of stress in ours. how redundant is that last sentence! haha. between Melia’s medical issues, my impending birth of baby number two, cams insistence that there is nothing wrong with Melia- even though we have been told by professionals that there is- and having our developmentally delayed roommate acting up I think I have my fair share of stress...if not more.

I’ve had to call mom a few times and tell her to come get Melia. I have been at the end of my rope way too many times lately and knew if she wasn’t removed from me there was a good chance I could hurt her. I’m glad I have support and the sense to be able to call for help. I’d like to think I never would but honestly some days i can not deal with being bitten and scratched and hit and head butted one more time.

Another vent...

I hate that my pediatrician is helpful but not proactive. He will give me the tests I request but nothing more. Aren’t you supposed to be the one who knows what to do, I don’t know what tests would be most beneficial, I don’t know what all her symptoms could add up to. You are supposed to know or figure it out, please stop leaving it up to me.

So again with the hurry up and wait I seem to be experiencing on a daily basis now. She's on another waiting list for an MRI, EEG and some metabolic testing- yeah, bring on the blood work again because it didn’t traumatize her enough the first time! Don't get me wrong, I am all for these tests being done, heck I asked for them, I just wish I could explain them to her so she wouldn’t be scared or in pain. One of the hardest things is to see her screaming and looking at me with pleading eyes as I hold her down and someone pokes and prods at her. If I could change places with her, lose my ability to speak and have sensory issues so that she could go back to being a happy, carefree, ‘normal’ little girl, I would do it in a heartbeat. no questions asked!

I don't know what to do. the internet, in its vastness, seems so limited. or maybe my googling abilities are limited- either way, I want answers, I want clues, I want....something. I want Cam to stop saying ‘by the time she gets into one of those programs she is on the wait list for she will be talking, so what are you worried about’ or ‘you’re so neurotic, you just want to diagnose her with something, theres nothing wrong with her’.

Sometimes I don't think we are living in the same world, let alone house.I don’t think he hears or sees the same little girl I do. I don't think he gets- or wants to get- the situation we have been put in. I know he gets frustrated with her and the constant screaming, scratching and biting but he really cant be naive enough to think that given a few more months she will start to talk on her own and start behaving- can he?

some more venting...

We drove up to Red Deer for our two day developmental diagnostic clinic. we spent hours answering questions, feeling at times like I didn’t know my daughter at all because I couldn’t answer one or two, but then again I am pregnant and have no brain anymore. I feel like Melia didn’t show them the real her. She was so tired from not napping yet she preformed like a champion. She didn’t try to bite or scratch or scream her lungs out. All I can say is I’m glad these guys know what they are doing and can see past the little show she has put on for them. They tell us she is baffling them. what? Because of some things she does or doesn’t do she should be labeled Autistic. Yet, because of other things she does or doesn’t do they can’t and won’t label her that because she’s not.

So she's not autistic, now what? you would think that finding out she didn't have autism would bring me comfort, but in a strange way it doesn’t.

At least Autism would explain a lot more than the Sensory Regulatory Disorder with Hypersensitive/cautious- fearful and sensory seeking.... I cant even remember the long winded diagnosis right now. Plus add in her severe cognitive delay, which on paper makes her look like she should be drooling while flipping through a phonebook all day long. But in reality she really is a very smart girl.

And then, the doctors have no clue on her regression of speech. Great! So that is still at square one, and that is exactly the thing that got me worried in the first place- and the thing that frightens and frustrates me most, and I know it frustrates Melia too! At this point I ask her pediatrician about brain scans and tests that we could see if there is anything in her brain. I almost pray that there is a small, non-cancerous removable tumor that when they do a very simple surgery she will go back to where she was before. But part of me knows that would be too easy.

confession...

Okay, so i know i blogged about doing my Jillian workout and getting in shape. Well, Ive failed at it....well no, not failed, just delayed my success.
Ive realized that I'm alone and my life is just not really conducive to me working out on a regular basis- no, this doesn't mean I'm not going to, i really will try but between children who don't nap at the same time and Owen who doesn't sleep through the night yet (Ive tried to teach him, but he hasn't even doubled his birth weight yet so the doctor told me not to do it unless he does it on his own) I'm tired. I tried getting up early but I like my sleep too much in the morning and at night my house is boiling hot and I'm exhausted. Yes, these are excuses but i am doing the best I can with what I've been handed. Come September when Melia is in school i am planning on working out in the mornings when i can put Owen in the gym daycare and i can actually have a pattern to my life. but now, i will try to work out but i cant promise that i will be crazy like Jillian would need me to be!!

What do you do with all your free time...

I found this article on another blog and just had to repost it... so true!!

click to enlarge

Something Wicked....

Last night I went to Wicked with the ladies from Cam's family (Lindamom, Tiffani, Whitney, Miranda- and Megan, Tiff's SIL)
It was AHHHH-MAAAZZZIIIIIIIIIINNNNNNNNNGGGGG! totally worth the expensive tickets!! We sat in row F, and I so want to go again. I have been humming the songs all day- especially Defying gravity (of course) and Popular. Such fun songs.

vents continued...

Last sunday in church a little girl and her dad came over to talk with us. she had just turned 18 months old and when her dad told her to say hi, she did. When he asked her to say how are you, she copied him like a little parrot. ‘i like nursery’ ‘ hi friend’ and the most heart wrenching of all ‘ i love you’.
This is by far THE hardest thing to hear other kids say because one of my biggest fears is never hearing Melia say those three words to me. I dream about it. I pray for it. I wonder what it will sound like and feel like. I wonder where and when it will happen, or if it ever will happen. Will I cry, laugh or both? So, it makes me sad, even though I am sure their parents beam and cherish those words whole heartedly, I wonder how much more it would mean if they thought they might never get to hear it again?
So back to this dad and his precious girl, I just feel like he was unintentionally shoving it in my face. I know he wasn’t. At this point not many people know of our struggles but sometimes i feel like its just not fair.

I feel like I am stuck on an island with Melia that no one can get to and they don’t understand what its like to be trapped and they all just say, ‘wait a bit, she’s bound to figure it out, she's young. she will get you off the island if you just give her time’. well, she's two and she can’t figure it out, she's just waiting for her mom to do it and I cant because I am totally and utterly lost.

I feel like my eyes should be empty. I’ve cried enough for a lifetime in the last few months, yet still they come.

My Venting...

Okay, so my friend was going through Invitro because she has a hard time getting pregnant and she would write down thoughts and rants that she had as she was waiting in the doctors office or just as she felt she needed to vent, I have been doing the same in a sense for a while and have a whole bunch. I thought over the next while I might randomly post them. Mind you this all started about a year ago so the first ones will be past feelings etc. and they will get more current as they go.

So heres the first one....


I used to want eight kids, but now, so close to bringing number two into the world i find myself thinking at times ‘is it too late to only have one?’ Don’t get me wrong, I am so very excited for this new little person to join our family, I’m just scared at the thought of how I am going to survive.
Right now I feel like I am in no mans land. I’m only a few weeks away from taking my baby girl, who is not so much a baby anymore, to be assessed for autism. I’ve done the preliminary, mandatory, hearing tests, blood work and pediatric appointments- all that gave me no answers, no suggestions or clues on how i can get my two year old to talk again and stop beating the crap out of me on a daily basis.

part of me wants so badly for her to be autistic, or have Aspergers so that there can be a name, a diagnosis, something to blame for why she acts the way she does. The other part of me is just praying and hoping that my perfect little angel is just delayed or stubborn and that any day will snap out of this stage and speak in full sentences. We sometimes joke that one day she will just start saying “mother, stop patronizing me”. But I am pretty sure that that won’t happen.

Goals...

So I bought this DVD and my new goal is to do it everyday, well except maybe Sundays. Though you are supposed to do it for 30 days straight.... Sunday I believe should be a day of rest, and this will be much needed I think!!!

It' a 20 minute workout, everyday. I did it this morning and realized just how out of shape I have gotten since I got pregnant with Owen. Well, that is going to change or I will die trying- and I just might! haha! So hopefully by August 11th (maybe I'll count it as a birthday present to my sister) I should be down 20 lbs? thats what the front of the DVD says, but in any case, down some weight and looking gooder! I know thats not a word but I like it!
So I just measured myself....and in the interest of full disclosure and motivation I think I just might post those terrifying numbers. EEK!



I will continue to post my progress as the 30 days go on. Maybe every monday? or every 10 days? Not sure but I will. More to keep me going and accountable than for praise or anything. My reward will be looking and feeling good- though I'm thinking I may have to get up at 5 am to do this and so I may look good but be extremely tired! haha!

This is the life...

This weekend I was lucky enough to go to Montana at Ashley Lake with my friend Val and our babies... not our toddlers, they stayed with their dads so it was just the 4 of us. and it was nice!
We did lots of shopping on Friday, lots of sun tanning and reading on Saturday and well, packed up and went home on Sunday. It was wonderful. We are hoping to go next year without any children! That will be heaven, even though our little babies were such troopers for the 6+ hour car ride and all the shopping, it will be awesome to be able to sleep in and not have to stop to change diapers and feed kids every few hours!



Also, on Saturday, Owen turned 6 months old!! I cant believe it, he is getting so big, way too quick.
He can sit up by himself for a little while, im sure soon he wont need pillows surrounding him. He scoots backwards a little. He loves food! he had some carrots this weekend and loved them...I love this smiley boy sooo much!!!

As requested...

Here is the matching skirt. Sorry about the nudity :P

Owens Blessing

On Sunday June 19th (Fathers day) Owen was blessed in our church. He was so good and didn't cry or anything!
I made Melia a skirt with a matching bow tie for Owen. They turned out quite cute (and they were super easy!)



Melia loves her brother- a little TOO much!