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...