Catch Up Post!

I have not blogged in a long time. I think I have about five entries started but not finished. It makes me sad because I know writing down my thoughts is part of my self care. I also want to document what was going on in our lives to be able to look back. I don’t know if my kids will actually be interested but I think I will be when I’m old!

Since Sofie’s birthday at the end of April a lot has happened. June was a CRAZY month in particular. That has a lot to do with why I haven’t had time to sit down and blog   as well. This is going to be an update post. Quick and painless and then I’ll work on those other posts I haven’t finished….

– School ended! My big girls had an awesome year and are graduating on to Grade 1 and 2! The last few weeks were kind of like pulling teeth. We were all done school and had probably learned all we were going to. Sofie really did not like her afternoon EA at the end of it and was having some major issues around that but we did our best to work through it and get through it.

– Sofie had a sleep study done at Children’s hospital. That was an interesting experience to say the least! It was actually an accident it got booked in the first place. My doctor sent in the wrong referral. I’m glad he did though. I had been asking about getting one done for years because I suspected mild sleep apnea. It came back that she actually has moderate sleep apnea and the minute her ENT saw the report (because I followed up) surgery was booked to get her tonsils, adenoids and possibly ear tubes, because of more fluid in her ears. Lesson learned. Follow your instinct Momma’s!

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– Livi passed her Red Cross Swim lessons! She actually passed 2 levels at once and gets to advance to level 3 in the fall!

– I live in the Fraser Valley which is surrounded by mountains, lakes and rivers. I don’t think I always appreciated that growing up but am finding a renewed love for it now. This is the first year we can go and do things with out baby gear and I’m getting to have all these experiences again through my kids eyes. An absolute favourite place of ours, we’ve discovered together, is the river. The kids are just mesmerized by it. It is our happy place and 5 minutes from our house.

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– I got my hair cut… first time in close to a year. It was straight for a day too…. It might blow your mind 😉

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– Sofie can now dress herself! Upside is I just help her with her pull up, because that’s a little tricky, and she can do the rest herself and come up for breakfast! The downside is she will change her outfit 3-4 times a day if I don’t stop her, and not always with clean clothes.

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– Sofie also doesn’t need to sleep in her sleep sack anymore. She still ends up sleeping on the floor frequently but has only stripped once or twice in the morning when she knows it’s time to get up!

– I’ve already bought Christmas presents.

– Berry season came early in the Fraser Valley and it was delicious.

– We had the girls Frozen themed joint birthday party with a special guest… The Reptile Guy! It was pretty awesome.

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– We cut all the girls hair short and I LOVE IT. – Sofie got invited to her best friend’s ‘bring a friend to dance class’ day. This little girl has one amazing inclusive little heart.

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– Evelyn fit in to our ‘My Sister Has Designer Genes’ t-shirt agin this year for the Walk for Awareness. I love that shirt. Lots of love and memories.

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– We have discovered and been amazed at what good quality essential oils can do for our family. It has transformed us in a matter of weeks. This is one of those posts I am needing to work on but I had to mention it. Approaching and using them for mental health and for kids with special needs or trauma has been earth moving.

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– At the end of June, along side of the end of school year crazy, we had 22 appointments in 12 days as well as 8 family events. It was insane and I was extra thankful for the oils then! My kids were angels in the waiting rooms. It was freaky.

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– The same week I found out about Sofie’s surgery, amidst the crazy 30 appointments week, we discovered that Evelyn’s teeth are in need of some major work. Her teeth are hyper-calcified and pitted, a genetic issue apparently, and are deteriorating faster than we thought. She needs all her teeth capped to protect them.  It was and is pretty devastating news. I got a second opinion from my dentist and he agreed. Though I know there is nothing more I could have done to prevent or fix this I’m still feeling guilty and nervous about it all.

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– We got to meet this little guy again. The friend of ours who adopted her son with Down Syndrome from Bulgaria came for dinner and we got to see him and Sofie together!

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– Elementary school Sports Day’s are a lot of fun.

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Summer vacation is in full swing and lots of fun stuff has already happened. I’ll save that for another update though!

Sofie’s 7th Birthday!

Sofie is 7. How the heck did that happen?!
(I did start this on her birthday but have no time or energy to blog anymore! Hopefully I can find time for it again.Sorry it’s so late!)

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The frail, sickly 3.5 year old that we brought home has vanished.

She is alive, vibrant and triumphant! She is such a wonderful, vivacious child. I’m so blessed to be her Mommy!

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Her personality is infectious. Going places with her is kind of like being in the company of a rockstar. Livi has learned the meaning of the word ‘popular’ because of her. I’m not sure if that’s a good thing…

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She is loving school and works hard at her words and writing but it is slow coming right now. She can now trace and verbally spell her name though! She goes in to the classroom with her thermos almost totally independently now, hanging up her jacket and backpack on her own. She still needs help with her shoes and some prompting but it’s coming! Socially, Sofie is doing great! She has real friends and has a best friend at school who is a complete little gem and Sofie loves her. It warms my heart. I was so worried about her making friends.

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Sofie loves playing with hair, the longer the hair the better. I have very long hair right now and love relaxing with her while she plays with my hair. Most of the time she is really gentle 😉 She still loves dancing and music. We have dance parties numerous times a week. I think Taylor Swift is still her favourite but most Pop music will do!

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She has so many words now and we are seeing the beginning of conversations with her. Her EA at school works on sign language with her too. I’m not so great at it but do see it helping her communicate! As her communication keeps expanding I really see her maturing. A few months ago Evelyn and Sofie were developmentally equal but Sofie has jumped ahead again!

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Her favourite foods are tortellini alfredo and ice cream. She will eat veggies, and most fruit and nuts without a thought now so I don’t worry so much about her nutrition. That is a huge advancement over the last 2 years!

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Sofie is doing so well developmentally and behaviourally. It’s amazing really. She still has her days, a few a week actually, but we are all working hard and together 🙂 I can’t wait to see how far she’s come by next year!

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Happy Birthday Sofie! You are a miracle!

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The R Word

When you say someone or something is a “retard” or “retarded” you are using a derogatory term insinuating that what or who you are talking about is stupid, slow, ridiculous, crazy, disabled, uncool, etc…

The word comes from a medical term still used occasionally to describe my daughter’s extra chromosome and other’s intellectual disabilities.  Basically, when you use the r-word, you are saying something is “stupid… like Sofie”.

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I cringe at the knowledge that Sofie and her sisters will understand what that word means one day. They will know that whatever or whoever is being talked about is “ridiculous like Sofie”. They have already heard it. Right now, my girls can’t imagine anyone associating Sofie with being anything less than incredible. As family, friends, thoughtful human beings and people who love and respect Sofie, can you help us to keep that heart-crushing day from coming.

Pledge to end the r-word with us. 

http://www.r-word.org

Obviously we know that Sofie is anything but stupid or ridiculous. She has been through and overcome more in her short life than most adults have. She works hard everyday and comes up against challenges she has to overcome hourly. She is someone to look up too, not down on.

Lets respect everyone.

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