Monday, January 29, 2018

Things have been Quiet

Finding the perfect hat

Taylor has been feeling a bit under the weather. Two Sundays ago it seemed like Taylor had an ear infection, however the doctor said it looked good, no infection. So the diagnosis was likely viral. She has been okay, although a bit withdrawn. She tends to get a fever, so not quite sure what is going on other then a viral infection. We took Taylor shopping for a fancy hat as we really wanted to do a fancy picture as my friend Wendy was in town to visit and that is something we adult girls do. I thought it would be a great opportunity to capture some photos of Taylor.

Taylor with her Cousin at her Cheer Showcase at Salisbury school
Taylor has not wanted to go to school. I am unsure if its just not feeling well or the reality of what she can't do anymore. She has kept busy at home with helping Dad redo the craft room, baking and cooking with Mindy, and visiting with her grandparents. She had a lot of fun last week with Nana and Grandpa playing Uno. 

Taylor was super resistant and it took constant coaxing. We finally got her to pick a hat. Win! This last Sunday we planned to do the pictures. Again it was pulling teeth a bit, we got her to let Mindy curl her hair. 

Wendy then let Taylor do her makeup, and then Mindy did Taylor's makeup. 

I had Taylor try some of Aaryanna's dresses, and jewellery, then we were all ready to take some photos.

I think she had fun, putting up with us being totally ridiculous. 

Friday, January 19, 2018

Snowmobiling Trip was a Bust!

Well the night before they were set to leave, Marley (their puppy) got sick. She was throwing up and Mindy ended up taking her to the emergency vet. Mindy was worried she had wood in her throat or something as she is always chewing up the bushes and trees in the yard. She was x-rayed, and there was nothing, however, her symptoms pointed to "kennel cough". So they have to wait 3 weeks before Marley can be put into a kennel so that they can go on a goes on. Marley is feeling better though.

Taylor has gone to school 1/2 day on Tuesday this week. She has been fairly low key, but happy. Today she went swimming, and Ikea. Landon and Taylor have been sorting through all the stuff they piled into the spare room when they moved Taylor's bedroom.

I am trying to see if I can get taylor to do a dress up photo with Mindy, Wendy, Aaryanna and I. We started doing dress up in older styles when we went to NYC for my 40th, so I thought maybe she would like to do that while Wendy is in town for a visit. Something silly and fun. Hopefully she will and I can share some photos.

Have a wonderful weekend everyone!

Sunday, January 14, 2018

What has been Happening

So as most know Taylor went to school on Monday and stayed the whole day. I updated some awareness we developed due to her day. Taylor was very tired from the day, so Tuesday she decided she would stay home and rest. She was in good spirits and had a great visit with her psychologist at the Kids with Cancer House. As an aside, I just want to say how absolutely AMAZING the Kids with Cancer Society is for families with children with Cancer, as well as post cancer issues.

If you are looking for a great place to donate, or do a fundraiser I would wholeheartedly encourage you to donate to this society. They have been an absolutely vital part of our journey with Taylor, supporting during treatments as well as after. So many people do not realize that after you undergo cancer treatments, kids are left with different issues, especially in their education/learning. The society educates and supports children and families to navigate and get the support they need for these kids to be successful. I put a link to their website in the name of the society  (above paragraph).

Wednesday January 10th, Taylor again went to school. It was a short day, and she again stayed the entire day. I believe she will probably go every other day, that way she gets some rest in between. She did not want to go Friday though as her teacher would be away. They all had a relaxing day, I came for a visit after school and we played UNO. I think I have surprised Taylor as I am winning more after taking on some of her tactics, LOL.

Thursday, Taylor went to visit Grandpa and Nana. They went to see the movie Ferdinand, which she enjoyed. She was super excited to see them, and I am seeing her behaviour as much more like her regular self. So glad she's having these good days.

Saturday she went for a sleepover at Grandma's house with her cousin Kiandra. They had fun shopping, finding some new snow jackets as hers are a bit tight. They went to Lingnan's for dinner with family friends, Lorne, June, and Corrie-Lynn. Taylor was having fun when she FaceTimed me, enjoying Kiandra being silly.

Mindy, Landon and Taylor plan to head to the mountains Monday for a few days. Landon really wants to share the beauty and joy he gets from snowmobiling with Taylor, but up until now she has not wanted to go. I am hoping they have a wonderful trip!

Updates. I have people wanting updates all the time. I want to just tell everyone that I will share information WHEN I HAVE TIME, or if something should happen. If there are no updates, it is generally a symptom of me being busy (I work full-time and have my own family), and not much is happening with Taylor. If something bad happens with Taylor I have always updated quickly. ALWAYS! So please respect that if nothing is being posted, nothing is happening. I appreciate everyone cares, but its unrealistic to update all the time, especially when not much is happening. I try to conserve my energy for when its needed. Please stay warm everyone, enjoy your loved ones, as we just never know when that will be ripped from us.

Monday, January 8, 2018

First Day Back...A Wonderful Success!

On her way home after school

Taylor was so excited yesterday packing up for school, picking her outfit, making lunch and snacks. I was so paranoid. She was up with the birds this morning to go to school. She texted me this morning to let me know she was going to school, LOL, she usually texts me every morning. Mindy forgot to snap pictures as she was more focused on getting Taylor all settled, so no early morning shots, LOL.

To say I was on the edge of my seat all day, is an understatement. I checked with Mindy if she had called to come home, but nope. The kid stayed ALL DAY, what a trooper!

She was so proud of her full page of writing that she did, so freaking awesome. So proud of my little wiener.

She was apparently starving when she got home, so they made some mini pizzas...tough not just eating whenever you feel like it, LOL

Taylor had an AMAZING day! Teachers, Educational Assistants, and all the school staff were/are awesome. The kids were are wonderful too! Thank you everyone in Taylor's world today for ensuring she had the best day ever. 

One thing I will mention as I had forgotten, and it annoyed Taylor today, was in questioning her how her day was. Sounds silly, but if you recall she gets overstimulated and her ability to communicate is reduced. Because she made it through the day, she was exhausted by the end, as she does not filter out stimuli that the normal person does without thinking. This means her brain doesn't always get "breaks", which can be super exhausting for her. All day she of course had totally normal sorts of questions:

“did you have a good Christmas Taylor” 
“so happy to see you Taylor” 
“we missed you Taylor” 
and then all afternoon 
“how was your day” 
“did you have fun at school” etc...

These are totally NORMAL, not offensive questions. This is what I did too, because I forgot. So I am mentioning this for future dealings with Taylor. So although Taylor of course talks, seems rather normal, she isn't. It can be really deceiving. So when she gets all these questions, repeatedly, I am thinking she is getting frustrated because 1. she is tired. 2. She doesn't always have the ability to answer, or know what to say. These seem like such easy things for someone to respond to. They are questions to try to gauge where she is at, and how to help her. 

So I am not putting this here because I want anyone feeling bad, or second guessing themselves. I put this here to raise awareness when dealing with Taylor that she may get irritable, or respond rudely, not because she doesn't like someone. Not because she isn't actually having fun. It could be because she is tired or can't come up with the right thing to say. It may show in her getting defensive and flippantly saying, "I don't care", or getting upset, or overwhelmed, tearful. It tends to be more the actual questions that require response that frustrate her, which makes me think its a communication thing. 

I know Mindy is going to talk with her psychologist about this to see what we can do to help with this, as these are sometimes going to just happen with well meaning people. My guess is we need to find alternate ways to get that same information and not bombard her too much. Remember, me, Auntie extrodinnaire, made this error. I did hear she did awesome with not using her "colourful" language at school all day, it was only when she spoke to me, her potty mouthed auntie that she slipped a few more exciting adjectives. LOL

Again, thank you teachers and Woodbridge staff, parents and kids for helping Taylor have an AMAZING first day back! She is super excited to go back tomorrow. 

Sunday, January 7, 2018

My Fears...

Taylor's School Picture this Year
So Taylor is super excited to be going back to school tomorrow. She is making a poster of her experience at the hospital, and her wish trip.

Taylor also wants to pink her hair and shave it off for Hair Massacre, so Mindy says she might get a team together. I will update this when I know more.

So what are my fears?

Taylor returning to school and becoming overwhelmed. Taylor is super hard on herself. She is very sensitive and wants to please. This can be a wonderful quality, but it also makes her extremely vulnerable. I worry that she will feel bad about herself, feel stupid. I know she is none of those things, but kids only compare themselves to others and want to be like everyone else, it breaks my heart. I so want her to enjoy school, but I worry, I fear...She has told me repeatedly how she needs to get back to school as she has missed so much. She worries she is going to be so far behind.

Kids at school will be mean or hurt her feelings. Kids are kids. I worry someone will say something about her weight, how she looks or moves. These are all things she is really self conscious about, one of the reasons I know she probably does not want pictures taken of herself. It has only been a few months, but she looks very different. She has put on weight, she is really puffy from the steroids, and she has a droopy left side of her face. She sometimes drools, and when she eats sometimes she has food coming out the left side of her face.

This may seem like silly small things to worry about, but I know these are things that Taylor worries about. I know it will wound her if kids make fun of her. Kids can be so cruel. In a perfect world, this would be a normal passage of time, something we could learn from...but we don't have time. It kills me. If I could shield her in a bubble, make her every moment joyous I would. Unfortunately the world does not work that way.

So please send my girls prayers and strength, hope and love. Be kind, and protect my girl.

Saturday, January 6, 2018

Christmas Break Quickly Coming to an End

I really don't know where the time goes.

Taylor has been doing really, really good since Christmas. We have spent most days wandering around at short intervals, playing Uno, making lists and updating her agenda. She wanted a Happy Planner like Mindy and I, so she could "journal" with us, LOL. Taylor is very much like me, and loves stationary and tape, stickers, pens, etc. She wanted Flair pens, as Mindy has them, as do I, so I gave her a set.

Taylor is texting up a storm lately. She has been doing an absolutely awesome job sending messages. We get lots of creative spelling, but I see huge improvements in her spelling and ability to communicate in writing,which she has always struggled with. We also do random emojis back and forth to each other, as well as audio messages. She really seems to love doing it, unless of course she is busy, then she gets irritated by people messaging her, LOL, and will respond with, "I don't care"; however, this just means she is tired, or busy. I have been trying to encourage her to just say that, but this is an issue the psychologist have been warning about. Her ability to communicate is becoming more difficult, and she doesn't always know how to express herself.

We had some great "breakthroughs". Taylor has not wanted pictures taken and she has been super resistant and gets angry. I think because she is slowly feeling better so she is not quite as irritated when she catches us snapping the few shots we try to get. On Christmas Day, out of the blue when I asked if she was wearing a dress, as I was wearing a dress, she sent me a SELFIE! I cannot explain how AMAZING this was. Taylor and I have always sent each other silly pictures of ourselves, and videos, but it hasn't happened reciprocally in a long, long time. I send her photos, but she never sends me ones of herself lately, other people yes, NEVER her. So since she got sick I have had nothing. This was a true Christmas gift. She has not sent another, but I am an optimist.

Another breakthrough was her staying overnight at my house. She wanted to on the Friday December 22nd, when school went out for the break, but she got nervous and Mindy and Landon picked her up. So I told her we would just keep trying and that it was okay if she got nervous and scared, we would just keep doing it. On New Years Day, Taylor and Kiandra (her cousin, my niece) were chatting on FaceTime, and Taylor invited Kiandra to come sleepover at my place. So Kiandra came over, the girls played Uno, watched movie, etc. and Taylor actually stayed the night! Hurrah, movement in her becoming more independent.

We went shopping the next day, grabbing McDonald's for lunch. It has been a slow week, lots of visits. Taylor went out with her Nana and Grandpa on Thursday, then over to Grandma Josie's on Friday. She seems much more settled and happier. She of course still gets tired easily, but she is in a much more positive mood. They have lowered her steroids, and she does not take much for pain medication either at this point. She is still wanting to go back to school, so we will see how that works out.