Saturday, December 27, 2014

Merry Christmas & 30 months old

It has been a whirlwind of a week. The little dragons are officially 2.5 years old, have survived Christmas and all the festivities, and are feeling much better after last week's mystery illness.

We are all officially exhausted and trying to catch up on sleep. Planning for the holidays is hard work yet really rewarding for the kids. Luckily we had lots of help, especially in the gift wrapping department (thanks Grandma!) We definitely got into Santa this year and the little dragons loved the holiday. They especially liked Santa, Frosty the Snowman, and Rudolph the Red Nosed Reindeer. They also started to understand the concepts of gift giving and receiving, which was really neat to watch. The little dragons made their own handmade presents for their friends and family and were very proud to pass them out and tell everyone about the gifts. 

Christmas Eve was spent with Jimmy's family until very late into the evening. We got home right before midnight, read "The Night Before Christmas", and got everyone to bed. 

In the morning, the little dragons slept in and then found the Christmas tree lined with gifts from Santa and our family. They were excited and spent lots of time with their new toys. There was a little fighting - they are both into "MINE" right now and it's been a challenge. However, we sat down for breakfast of my family's Tea Sticks (Finnish Pulla Bread, made gluten free) and pumpkin pie. We got ready and headed down the hill for our first dinner. 

We met with my side of the family first, and the little dragons were content to play ball with their cousins and great uncle and be wild all afternoon. They ate dinner at their own kids table, and ate a ton of ham, potatoes, rice, cinnamon pears, and blueberry cinnamon sponge cake. They were crazy and barely had time for a nap while on the way to our next destination - Jimmy's family dinner. 

Christmas Day was snowy and the weather declined as the day went on. By the time we were on the road in the early evening, the conditions were poor and it took a long time to get from point A to point B. We were monitoring the weather and road conditions, and it soon became clear that we would be safer to stay in town than to attempt to get back home - there were dozens of accidents on the highway and no plows out, and we were not willing to take any risks. Jimmy's sister and brother in-law invited us to stay overnight at their house and luckily everything worked out for the best. 

So we stayed late with Jimmy's family and ate Prime Rib - the little dragons were still wild and not slowing down anytime soon. They snacked all night and barely ate dinner, but they saved room for cookies. We opened gifts and then headed out in the snow for our sleepover. 

We all stayed up past midnight, but eventually the little dragons went fast to sleep in a Pack & Play. They woke up and played in the morning with their cousin and his new toys. Maisie wasn't hungry and took a nap, while James ate like a king and refused to nap. We headed home after lunch, made it safely, and spent the rest of the day with the kids napping intermittently and eating leftovers. 

Book: The Night Before Christmas (Maisie can recite a lot of this book by heart). 
Song: "Jingle Bells" and "Rudolph the Red Nosed Reindeer" - she can sing both. 
Words: We have really been into holiday-themed stuff lately. Maisie loves talking about all of the Christmas stuff she knows about, like "children snug in their beds" and "not a creature was stirring, not even a mouse". Very advanced for 2.5. She is also into declaring objects as "mine!"  
Toy: Whatever James is playing with. Also, baby dolls, dinosaurs, little people, etc. 
Food: cheese, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas, quesadillas, Indian food
Animal: dog, kitty, monkey
Time of the Day: bath time, "Preschool" time (Chalk Preschool online). 
Activity: drawing, singing, jumping, painting, getting into trouble
Color: blue
Clothing Size: 12-18 months, 18 month PJ's. 
Shoe Size: 4 
Weight: 21lbs at last checkup on 12/11/12
Height: 32 inches
Number of Teeth: 19+

Book: ABC by Dr Suess
Song: "Rudolph the Red Nosed Reindeer". It is adorable; he knows all the words heart and can sing it for you on request. 
Words: James is very much into "mine", like Maisie, but he is also developing his sentences. He said the other day, "I am sorry for throwing my water bottle off the table". 
Toy: Balls are the favorite. But James likes other things, like musical toys and toys that make noise. He also likes whatever Maisie is playing with. 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, chili, tortillas, cheese, Indian food. 
Animal: dragon or bear
Time of the Day: assembling his ball "entourage" for meals. Tonight there were 9 balls at dinner. Yesterday there were 7 green balls (yes, only green ones) at breakfast. James is particular about his ball collection and making sure they eat with us. 
Activity: playing with balls, walking and standing with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, and we are getting to 12-18 month pants due to length. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 20lbs at last checkup on 12/11/12
Height: 31.5 inches
Number of Teeth: 19+

James giving his 10 green balls a bath - his idea, not mine. 

Saturday, December 20, 2014

Feeling off

The last week Maisie has been fighting off some sort of an infection, but it hasn't really gone one way or the other and we've been thankful for that. She had to go back on oxygen overnight after a few pulse ox checks found her saturations to be in the 70's. We don't know what she has, but the doctor gave both James and Maisie Tamiflu because of the huge increase of people, especially children, with Influenza right now. 

Aside from being a little "off", it's difficult to say what is really going on with her. Given her history the doctor has been pretty proactive and concerned. It is better than the alternative. But, she isn't sleeping well, she's not eating well, and she's had some periods of grumpiness. And we've got the hypoxemia or low oxygen saturations she's been having. Maisie did have a fever over a 24 hour period last weekend and has had some lethargy. But that's about it. 

Maisie is doing a great job given the circumstances, keeping her oxygen on overnight and during naps and not even fighting it. She'll give us the cues when she has had enough and doesn't need the O's anymore. She's usually right. 

James has been on the fence with infection also- sometimes he seems to be not doing well and other times just fine. Hopefully all of their symptoms will resolve soon. 

We put up our Christmas tree and holiday decorations. The little dragons and really getting into the season. They absolutely love singing Rudolph the Red Nosed Reindeer and Jingle Bells. They like Frosty the Snowman and have been pretty good about keeping our tree and the ornaments intact. 

We are hoping for an illness free Christmas with our friends and family. 

Friday, December 12, 2014

20 pounders!

We've been waiting to post this update for a while, and seeing as how our doctors appointments are really infrequent these days we aren't weighed very often any more. From the NICU days that's kind of tough to transition to, but you get used to it when your kids stay in the same clothes for a year. 

They seem to be on a growth spurt recently- getting taller definitely and perhaps gaining some weight. But, the little dragons are keeping on their curve at way below the 3rd percentile and things are going pretty well. 

Maisie weighs 21 pounds, and James weighs 20 pounds. 

They are pretty much out of their 9 month and under pants due to length, but as clothes are sized all over the place we try to stick to the tall and skinny brands. 

Last weekend we visited Santa and James wore his Christmas outfit for the 3rd year in a row. The pants fit perfectly finally (it's a 3-6 month outfit), the vest was a perfect fit and the shirt was definitely on the end of its life span. Our first Christmas James went pants-less for most of our photos after wearing a pair of Maisie's ruffle-bum pants that he was not happy with. It's crazy to think just how far we've come. 

Yesterday we went to the spasticity clinic and learned that the AFO's haven't been helping James's feet transition to a more normalized position allowing for proper gait, which affected several of his muscles, limiting his range of motion and creating more hurdles to work through. We determined that he will need more extensive help to prevent his feet from permanently forming into a pronated position. He has made amazing improvements in his strength and abilities with standing/walking, and the AFO's have helped to stabilize him- unfortunately with some negative effects. Therefore we agreed to continue an aggressive therapy plan, do Botox injections in isolated muscles and create better orthotics next month. James will also have another MRI to make sure his spine is stable with no regeneration of the cyst. We are hoping that this will be a step in the right direction for James.