Wednesday, October 22, 2014

Pumpkin Patch

Over the weekend we went to our first pumpkin patch. Being in quarantine, we went to a small, low-key patch near our house. The kids crawled and climbed around and selected their pumpkins, and had a great time. We had free range of the whole patch, no company, and were happy to pay a total of $8 for our 3 pumpkins. It was a good way to spend the morning. 


***
The little dragons are definitely in toddler stage. They are fiercely independent and want to do things on their own. They both can climb into their high chairs by themselves - James only needs a boost due to his short legs. 
We have been doing some artwork and  finger painting and getting pretty messy
They also really like to send videos to their cousin Marri in Washington and see pictures / videos of her. We have a mini pen pal thing going on, which works out the best because all the kids like to watch their videos over and over again. Sometimes we will FaceTime with our family and friends and the little dragons do really well with that too. 

They also are very into cuddling and "I love you" right now, which makes for some pretty amazing and heart-warming memories for us. 

Wednesday, October 15, 2014

October 15th

The little dragons are doing just fine. They are loving and adorable and wonderful. I am so thankful for every day we have together, and that they are growing and making progress every day. It is what I wished for in my pregnancy and I am truly lucky. It has not been a path without difficulty and lots of trials along the way- but we are so very fortunate. 

Today I want to take a moment and give our page to those babies that fought the good fight for pProm or prematurity. Our friends who passed on. Our friends whose stories are cut short, only to be finished another day.

Our story could have been that way and for one reason or another, it is not. So today we give our love to those families that don't have babies to hold in their arms, those families who fought just as hard as we did and still had to let go. Their grief and pain is unbearable and unimaginable.

Today we remember Jacob, Jordan, Pip, Bennett, Caitlyn, Nico, Spencer, Quinn, Elijah, Judah, Annabelle... And so many more, many that will never be forgotten and that are always in our hearts. 

1 in 4 has lost a child. Today is infant and pregnancy loss awareness day. 

Monday, October 6, 2014

The IFSP

 
We've been in Early Intervention (EI) with DDRC through Jeffco for two years now - well, officially at the end of this month as James was discharged from the NICU on October 28th, 2012. 

If you were to just look at the testing side of things, the little dragons are ahead in some areas and behind in others. Keep in mind, they don't adjust for prematurity past age two. 

If you were to compare our kids to other kids, it might bring up feelings of sadness or grief, loss or uncertainty. But for me, and most of our family I suppose; we are absolutely thrilled at every SUCCESS the kids have made and the fact that they are breaking down barriers and doing great things every day. 

The little dragons have absolutely no idea about the mountains they've climbed - or the ones that they'll have to face in the future. And I hope they continue to make progress, fight for survival, and strive for a great life every step of the way. 

So, at our annual IFSP (Individualized Fanily Service Plan) meeting today, we talked about goals and tried to figure out a strategy for EI therapy for the little dragons over the next nine months. They will officially graduate from EI services at their 3rd birthday in June, and from there we will be in a whole new world. 

James will receive PT and OT to help him catch up in his gross and fine motor skills, which he is significantly delayed in. While James has made great progress, the tests only look at skills, not progress. James has graduated speech therapy and currently has expressive language skills several months beyond his age. 
(Baby Yoga, James' new favorite thing). 

Maisie will receive followup with speech therapy and PT through the next six months to make sure she doesn't fall behind. She is slightly behind in gross motor skills and ahead in all areas of language. 

A year ago when we did the same annual IFSP, James had no teeth yet and was unable to feed himself. Only two months later he had ten teeth, was feeding himself 75% of the time, and within four months of the IFSP had begun crawling on all fours. During this time James started to experience weakness due to increasing pressure in his spine from the tethered cord and arachnoid cyst. We had no idea; had we been able to address these issues earlier perhaps it would have made a difference. 


This time last year, Maisie was still cruising and hadn't begun walking on her own yet. That would happen three months later. She preferred to eat things with a smoothie texture because she still lacked proper tongue control from her Macroglossia. Maisie spent her week in the PICU from Enterovirus, Rhinovirus, Bronchiolitis & Pneumonia. She continues to struggle with respiratory issues and we worry every second of the day about impending illness and overexertion - and what the future looks like for her lungs. 


***
The tests don't look at the child, or what the child has gone through. It's a yes or no - with zero adaptation or room for commentary. This is where we love our medical providers and the group of specialists that we see- they value PROGRESS versus comparing our kids to every other person on the planet. 

These kiddos are important; they are the little dragons, who have survived the impossible and are changing the world, one day at a time. 

Friday, September 26, 2014

27 months old

The little dragons are doing great. They're talking, eating, growing, and being toddlers. They are loving and wild, dramatic and imaginative.



We haven't had appointments except to adjust James's AFO's; his legs are gaining strength and muscle mass and he is getting stronger every day. A small adjustment was made to the calf positioner to make room for his growth. 

Coming up we will do flu shots and the IFSP (Individualized Family Service Plan) for Early Intervention. We will be setting up goals and services for our next 6 months of in-home therapy for the babies. 

PS, if you haven't seen the Little Dragons' Facebook page; there are two videos of the babies singing their favorite songs. Go to: facebook.com/littledragons626


***
Maisie:
Book: Five Little Monkeys
Song: "ABC Song", "Twinkle Twinkle Little Star", & "Five Little Monkeys"
Words: Hundreds. Sentences. It's crazy. She's very much into "I love you". Today she told the orthotist for James's AFO's: "Oh, I love you foot doctor, I really do." 
Toy: Mickey & Minnie Mouse, Baby Doll, Bucky the Dragon. 
Food: cheese sticks, cookies, pancakes, waffles, avocado, fruit snacks, blueberries, beans, rice, tortillas. 
Animal: dog, kitty, monkey
Time of the Day: Playtime
Activity: drawing, singing, playing with James, playing make believe
Color: blue
Clothing Size: 12-18 months. Finally transitioning to 18 month PJ's!
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 32 inches
Number of Teeth: 18+


James:
Book: ABC by Dr Suess, or any book with a ball in it. 
Song: "Twinkle Twinkle Little Star", "Elmo's Song", and "Itsy Bitsy Spider". 
Words: James can sing many songs and his vocabulary is exploding right now! It's very exciting. For those who believe he can only say "ball", we've been compiling a list of the words he knows (see below). 
Toy: Any kind of ball- his favorite is currently football. He also likes to play puzzle buckets while standing with his walker. Speaking of the walker; James is walking with it everywhere! 
Food: pancakes, waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta, tortillas, cheese. 
Animal: dragon or bear
Time of the Day: playtime or Elmo Time
Activity: playing with his ball, walking with help, and chewing on his green blankie. 
Color: green
Clothing Size: 12-18 months. James is wearing 18 month PJ's now, but he can also wear 6 month pants. 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide. 
Weight: 17lbs 9oz at last checkup on 06/30/14
Height: 31 inches
Number of Teeth: 19+



Wednesday, September 17, 2014

Maisie Day

Today we celebrate Maisie. It is her two year Home-A-Versary from the NICU. 

Maisie is growing up fast- exploring, learning, singing and jumping. She can sing "Twinkle Twinkle Little Star" and recite the entire "ABC Song". 

Year One.

Year Two. 

Tonight we ate tacos, cupcakes and ice cream. We stayed up an hour past our bedtime having fun, and just enjoyed time as a family. 

Two years ago, it was the first time we were able to hold both babies together after a long 83 day NICU stay. And James wouldn't come home for another 5 weeks; that week Maisie came home he spent two days and a total of 10 hours in the Operating Room. It was intense. Luckily, we all made it through and are here to celebrate!

***
I've always felt that Maisie helped protect James during our pregnancy. She kept us safe from infection due to her presentation as baby A. I had very severe issues with placental abruption and bleeding for weeks on end; in pProm bleeding weakens the amniotic sac and it put Maisie at a greater risk of pProm also. It was absolutely amazing that she endured 10 weeks of significant bleeding in the womb and did not rupture. Maisie is strong willed and assertive, and she is very protective over those she loves. I hope she'll continue to nurture those attributes as she grows. 

Tuesday, September 9, 2014

2014 Quarantine


This past weekend was a busy one. We saw our twin friends L&L and we went to the Big Chili Cook-Off in Evergreen. We all had a great time and the little dragons enjoyed eating lots of amazing food, as always.

The Big Chili Cook-Off was fun; we saw lots of fire trucks and tried dozens of types of chili. The event raises money for the mountain area volunteer fire departments and turns out a pretty good crowd. The little dragons voted for their favorite chilis and they loved the red chili from Cactus Jack's. It was a hit. 

***
It turns out that there are some pretty powerful bugs going around lately, and lots of kids have been hospitalized with Enterovirus 68. We are no stranger to enterovirus as Maisie had this and rhinovirus when she went into the PICU for the first time last November. 

The little dragons won't be getting RSV shots this year being two, so we will be going into quarantine earlier than normal this year. It's a little sad that we'll have to keep our playground visits to the backyard, and our playtime restricted to home; but the kids are fine with that. They have a lot to do and plenty to keep them occupied. 

Like, selfies. 

The swimming pool. 

Pedicures (evidenced by foot selfies). 

Elmo ball. 

Good food. 

Mickey and Minnie Mouse. 

Chex parties. 

Our PSA: wash your hands for 20 seconds with soap hottest water you can handle. Get Lysol Grade 3 Aerosol spray or Clorox Professional Grade Germicidal products- 99% of "disinfecting" wipes do not get rid of the viruses and bacteria that make people the sickest. Finally, if you are sick- stay home!



Sunday, August 31, 2014

26 months old

One of our readers mentioned a while back that the month-age thing (i.e. 26 months old) is confusing. I agree, and when people ask I tell them that the little dragons are two.

I still feel the need to do monthly updates and will continue to do them for several reasons. First and foremost, for the kids being preemies. The little dragons take their time to do things and it's important to track and monitor their growth and development. I can look back and exactly pinpoint what was happening when, which is important for our many medical providers. Luckily our appointments are on six month intervals now; but this makes their progress even more difficult to track. 

Secondly, it's important for us as a family to recap where we're at. Everyone struggles, but we prefer to celebrate - even the small stuff - and celebrating birthdays every year just doesn't cut it for us. Like most preemie families, we celebrate our birthdays and our coming-home days, the good days and the tough days. When your children were basically given no chance of survival, you celebrate; every word and every step.

I hope one day these little dragons are able to look back and feel proud of all that they have overcome, of all the adversity they have faced and conquered. They have seen more in their 26 months than most adults have experienced in a whole lifetime. Hopefully we can make a difference because of it. 

***
Maisie:
Book: Five Little Monkeys
Song: "Itsy Bitsy Spider", & "Five Little Monkeys"
Words: Maisie comes up with lots of interesting phrases. For example, "Mickey Mouse is going night night and has sweet dreams". 
Toy: Mickey & Minnie Mouse, Little People
Food: cheese sticks, cookies, pancakes, waffles, avocado, fruit snacks, peaches, blueberries
Animal: dog, kitty, monkey
Time of the Day: Potty Time (still making attempts at potty training). 
Activity: playing outside, sharing with James and make believe
Color: blue
Clothing Size: 9-12 months, maybe some 18 months but she can wear 6 month shorts 
Shoe Size: 4 
Weight: 19 lbs 11oz at last checkup on 08/15/14
Height: 31.75 inches
Number of Teeth: 18+


James:
Book: ABC by Dr Suess
Song: "Nom a Nom", "Elmo's Song", "Itsy Bitsy Spider",
Words: James is a parrot and will say anything and everything. He can say 5-6 words in a row. For example, "watch Elmo ball maybe later Mommy"
Toy: Any kind of ball- his favorite is currently football
Food: waffles, snickerdoodles, chips, fruit snacks, peaches, applesauce, pasta - he loves food. 
Animal: dragon or bear
Time of the Day: playtime or Elmo Time
Activity: playing with his ball, walking with help, and chewing on his green blankie
Color: green
Clothing Size: 9-12 months, maybe some 18 months but he can also wear 6 month pants 
Shoe Size: 4, but with his fancy AFO's aka his "Green Ball Shoes" James wears a size 5.5 wide
Weight: 17lbs 9oz at last checkup on 06/30/14
Height: 30.75 inches
Number of Teeth: 19+