Supergirl Version 4.0

Somebody had a birthday...

I feel like I say this every year, but I can't believe another year has gone by! Seriously? I blinked and all of a sudden she's four. We are having a party on the weekend with grandparents and a few of her little friends, so of course there will be lots more photos to come. One thing I struggle with every birthday is whether or not to make her a birthday cake. Nevermind that she can't chew solid food, but with her Ketogenic Diet birthday cake is sadly off limits. But it's still a celebration, and I think it's important for Marissa to see Taylor's birthday celebrated in the most 'normal' way. So at noon on her birthday, I finally decided to make a cake. And the most appropriate one I could think of...

Taylor had an EEG today, apparently her 8th one, followed up by an appointment with her Neurologist. I felt great while the EEG was happening, I've never seen the monitor look better. In the past it's been so full of chaos, but take a look at today's thing of beauty...

Dr. Bello looked at the footage with us afterwards, and you know what he said. That it's only 1% abnormal. That's right, ONE percent abnormal. Which means 99% NORMAL!!!!! He said it shows rare, isolated spikes during sleep, but the wake background is normal. Incredible. Supergirl continues to live up to her name. He once again said how her EEG results are remarkable. From a girl who was once having several hundred seizures A DAY, to this, truly is remarkable. We feel so incredibly grateful for Dr. Bello who suggested the IVIG treatments that have brought Taylor's seizures under control. And for living in Calgary where we have the Alberta Children's Hospital, the only hospital in Canada that offers IVIG as a treatment option for seizure disorders. We are so fortunate to be where we are.

So, here you have her, Supergirl Version 4.0!

As of yet, the underlying cause of Taylor's epilepsy, profound global developmental delay and related CP (cerebral palsy), is yet to be discovered. Dr. Bello shared some interesting information with us today though. There is compelling evidence that females with a history of infantile spasms and intellectual disabilities is because of a gene called PCDH19. Because of the increased awareness, there is new gene testing to confirm the presence of this gene mutation. So the paperwork is being done, and Taylor will be tested soon. We've been researching it online tonight, and if Taylor has this gene, then the underlying diagnosis is something called EFMR (epilepsy in females with mental retardation). Like he's told us in the past though, finding a diagnosis isn't going to change anything treatment-wise. For some reason though, and I can't really put into words, I would like to have an actual diagnosis. A reason. An explanation. An answer to the "why does she have this" question that we've always wondered. We may have that answer soon, but maybe not. Time will tell.

Tonight though, I feel blessed and grateful and in awe of my real life superhero.

Over the Rainbow

We decided to have a little birthday party for Taylor. She was cheated out of one last year when she was in the hospital for nearly a month. So this year I was determined to more than make up for it. Not in numbers. It was small, Taylor can't always handle too much commotion. Just a few of her friends. It was small but mighty. The love-to-entertain side of me came out in full force and I had a lot of fun putting this all together. Marissa had decided a while ago that she wanted to be Dorothy for Halloween. I never thought I'd find a costume, so I went to the fabric store, bought an authentic Dorothy costume pattern and lots of blue and white gingham. Then I thought, this would be a great theme for Taylor's birthday party! I thought I would do her up as the scarecrow. I decided that it didn't seem right for Marissa to be dressed in the leading lady's costume, when it's Taylor's party. Then I came across a Dorothy costume at Walmart, complete with sparkles. So it was settled, they would both be Dorothy! Here's the guest of honour...

And here is Dorothy #2, in the dress that I made myself, pretty happy with the way it turned out. She's wearing it for Halloween, then it'll be added to her dress-up clothes, big sister loves to play dress-up!

I googled, I read blogs, I searched, and all the pieces came together. I had a great time making a pair of sparkly ruby slippers. I had an old pair of heels that are way too tight and never get worn, that were perfect for the project. Add some spray adhesive and red glitter and call it done. But the pictures don't do justice to how sparkly they were!

Guests could 'Follow the Yellow Brick Road' up to our doorstep and pass by where the house landed on the Wicked Witch of the West! How fun is that?!

Next up on the 'To Do' list was loot bags. This was fun too. I made Tinman heart necklaces, Lion badges of courage, Scarecrow Doctor of Thinkology diplomas, and Dorothy ruby slipper cookies. I found little baskets at the dollar store for each loot bag and made liners out of the extra gingham I had.

I even made party hats, a birthday banner and tablecloth out of the gingham with accents cut out of red glitter cardstock! And what wasn't gingham was rainbow. The party was at lunchtime, so I did a big fruit platter in rainbow colours, a rainbow veggie platter, and homemade 'yellow brick road' Mac & Cheese. A tray of the ruby slipper cookies. And you know how in the movie, Dorothy gets water on the Wicked Witch of the East, then she melts? Well I made green punch with a black witch hat set on the side of the punch bowl with "I'm melting!" written on the side. Cute right?!

I couldn't come up with a blue or purple veggie for the rainbow theme...can you?

The melted witch punch was fun, but waaaay too sweet!

The masterpiece however was the cake. I took my inspiration from an outstanding rainbow cake that my friend Janella made for her daughter's birthday earlier this year. It took me nearly the entire day before the party to create but I was giddy every step of the way. And in case you're wondering, I didn't use copious amounts of liquid food colouring to get the rainbow colours, just small amounts of Wilton gel icing colours. You can get them at Michaels in loads of different colours. They're awesome. So here is a collage of the creation of the rainbow cake...

I used gumballs to decorate it, the colours were so vibrant! Here's the masterpiece all by itself...

But the best part was taking the first piece out and seeing the rainbow inside. It was impressive! But it sure is tricky getting a 6-layer piece of cake out. The cake was close to 8" tall.

Taylor was fascinated and totally fixated on the cake and all the candles as everyone sang Happy Birthday to her...

And here I think she's just saying, "Okay you know I can't eat this, do you really need to rub it in my face?"...

And here's a few shots of us with the birthday girl after the party was over. I love the one of her with Daddy, she gave a quick little smile right as I clicked the camera!

I may have gone a little crazy with this party, but the past few months for Taylor have been groundbreaking, and the little girl emerging from the fog of seizures that she's been under is more aware, perhaps even more than we realize. And I wanted to do something really special. She deserves special.

T.H.R.E.E.

Yes, it's true! Taylor is THREE years old today!!!! I can hardly believe it. She's not a baby anymore! We had Thanksgiving Dinner last night with Francis' family. His parents spent the night, so they got to have special cuddles with their granddaughter on her very birthday. We had a nice quiet day at home. I enjoyed a nice visit with my friend Carol who dropped in to see the birthday girl, what a lovely surprise.

I made a special cake to celebrate Taylor's birthday, even though she can't actually eat any of it. I found the Supergirl/Superman logo on the internet, enlarged it the right amount and printed it. Then I cut around the edges and cut out the bits on the inside around the S, placed it on top of the iced cake and traced it with a toothpick. Then I piped over the lines with icing and filled it all in. I had so much fun making this and was thrilled with how well it turned out!

We went to Mom's tonight for turkey/birthday celebration dinner. I made a special party hat for Taylor that looked really cute but it left hot pink fluff all over the place! Mom had a birthday banner, balloons and even a birthday badge for Taylor to wear.

Taylor had a great day today! She got cuddles with Oma & Papi in the morning, enjoyed her most favourite floortime freedom in the playroom, had a great nap, followed by a celebration at Granny's. What's not to love about all that! While Taylor was napping Marissa made her a very special birthday present. We picked out a pretty crystal frame and I cut out a piece of paper to fit in the opening. Then Marissa drew a picture of her and Taylor, complete with a sun, blue sky and green grass. We put it in the frame, and Marissa wrapped it up and made a card too. I just love it, so very special.

Double Header

Sunday must be the day for celebrating birthdays...

It was Daddy's birthday so Marissa and I got up early and made him a nice breakfast...fresh strawberries, cinnamon french toast, maple syrup breakfast sausages, and lattes. YUM. Happy birthday honey!

Then it was a flurry of activity getting ready to go out, Marissa's birthday party with her friends was at 11am...at Superstore. Sound strange? Sure felt odd going to a grocery store for a birthday party, but certain locations now have a PC Cooking School in house. They do cooking classes, and kids birthday parties. We booked a pizza party for Marissa's 5th.

Marissa and her friends geared up in hats and aprons, went through the handwashing station, then prepared to be mini chefs for the next 2 hours. It was fun to watch. I think the part I enjoyed most was not having to do a thing! I booked the party, we showed up, I took pictures, and then we went home. No organizing, no cooking, no cleanup...my kind of party!!! And the kids loved it. It was a huge success. They decorated their chef hats, made individual pizzas, decorated butterfly cakes as their take home gift, then dined together on pizza and birthday cake.

The guest of honour

A fine collection of mini chefs!

From there it was back home to celebrate Francis' birthday. Yummy supper, homemade birthday cake (purple of course in continuing our Purple Day theme), and presents. My favourite part...has to be that he thought he was a year older than he really is!

Of course it was purple inside too!

So, it was a very busy day today, full of celebrating, singing, and eating...oh happy day!

Catch Up!

Wow, it's sure been busy since we got home from Taylor's surgery! Finally coming up for air and time to do some catch up on the blog...

So...we got home from the hospital on the 9th and were booked for our first stay at Rotary Flames House on the 11th. All four of us stayed as a family for the weekend, it was wonderful! I can't say enough about it. And I was so very grateful to have nurses and doctors looking after Taylor all weekend so soon after her surgery. The g-tube site had me pretty intimidated so it was perfect timing to have that support to get us feeling more comfortable with everything. She was in the best of hands there, everyone was so lovely. All of Taylor's needs were taken care of by the team, so all we had to do was cuddle and enjoy her...and run after her older sister! Marissa was like a princess in a castle. Such a big place to explore, and explore she did! We chased after her all weekend. We met a lovely family who was also on their first stay at the House. Their special little girl had a sibling named Sam and Marissa attached herself to him for the whole weekend...it was all about Sam!! It was nice that she had a playmate for the weekend, but we were sure exhausted running after her constantly. Her listening ears were not functioning for some reason, so there were some challenging moments!

Taylor loves to swing, so she enjoyed lots of that over the weekend! Wonderful mats for floor time. And the most amazing chair, called the Dakota chair. We're looking into getting one for home, they're actually made in Calgary. It's like a beanbag chair but much more supportive, you can sit it upright like an actual chair, or push it right back so that it cradles Taylor giving her great support with no pressure points.

In the Dakota chair

Sooooo relaxing

This swing is amazing

More swing time

Another Dakota chair

My angel

Taylor's neck arching, head twisting, back crawl!

Marissa did some swinging too, had craft time, playroom time, playdough making with the other siblings, but mostly Sam time! Grandma & Grandpa joined us for dinner the first night and we gave them a little tour of the House. They brought Marissa a special book about feelings, and she enjoyed storytime with Grandma.

Storytime silly faces with Grandma

Marissa & her new buddy Sam

Making playdough in the Rumpus Room

Spinning after we twisted her up and let go, she loved it!

Our family suite was so nice. Three rooms connected together. I think my favourite part of the weekend was being called for mealtime. The nursing station would get a call and suddenly we'd hear..."supper is ready". And I didn't have to make it or clean up, just had to show up for meals and eat! I could get used to that! And the kitchen was lovely, a chef's dream!

View of Children's Hospital from our room

Amazing kitchen

Dining room

We got home Sunday afternoon, then went full swing into getting ready for Marissa's birthday! She turned 5 on Wednesday, don't know where time goes! We did a St. Patrick's theme for her birthday since they're just a day apart. It was full on green here! Even made a green supper. Lots of fun. She's going to have a party with her friends next weekend, it was just the four of us at home celebrating her very special birthday this week.

Party hat made by Mommy

Green ravioli, green cream sauce, green peas, and green punch!

Wednesday was Taylor's second IVIG treatment, and the first time her IVAD was used. So much better than torturing her to put an IV in, which usually requires several attempts and lots of tears. What they did was put some ametop cream on her skin over the IVAD site, left that on for half an hour to numb the skin. Then they put the needle through into the IVAD and she didn't feel a thing, it was perfect! It ran for a few hours, then we stayed another half an hour for monitoring to make sure she didn't have a reaction. I'm definitely a fan of this procedure vs the IV trauma. Dr. Bello thinks it will take two or three IVIG treatments before we know if it's effective in reducing Taylor's seizures. I'm going to be keeping more of an eye on them over the next few weeks, I think I'm noticing them reduce already, so my fingers and toes are crossed that this is going to help.

Taylor's been really uncomfortable since the surgery, very sensitive and sore around the g-tube. Screaming her little heart every day when we clean around it and turn it. One of the Home Nutrition nurses came to take a look while we were in for the IVIG treatment. She said it was in too tight and that was probably why Taylor was in such discomfort. She loosened it a bit and it has made the world of difference. She doesn't even cry now when we clean and turn it. Taylor has only rolled over onto her tummy once since the surgery and immediately screamed...too soon! Too tender. She hasn't attempted rolling onto her tummy since, I think she remembers the pain. Just needs a bit more time, maybe this week. The new pump works like a dream, and feeding is a breeze. Feeding on the go was a huge ordeal before, but now it's super easy. SO grateful that we got that magical little pump, and the wee backpack that it goes in with the feeding bag to make things so simple. She's been taking 60mL by mouth really well this past week. Her little teaspoon size 'tastes' of carrots and butter still takes her a long time to get through but we keep trying. I can't even describe how wonderful it is to not have the NG tube any more. Taylor's already coming around I think, she's letting us touch her face a bit more without getting upset. I even wiped her face the other day without near the drama that it used to be. My girl is coming back!

That's about it for this post, I think we're caught up! I'll sign off with this cute pic of Marissa. Ever since her friend Sophie got glasses, she wants them too. She came into the playroom the other day wearing a pair of mine and looked so darn cute. I wouldn't mind a bit if she needed glasses, she looks so studious and grown up...