Pre-K...gulp

This has been a big week full of big steps and milestones. 

Tuesday night I had the pleasure of attending a meeting for incoming kindergarten parents. Yep…kindergarten. We got some of the scoop on dates and other things that are coming up and to consider. Holy. Smokes. (Thanks Honor for watching them!)

 Wednesday was a day for appointments. In the morning we hit the ENT for a check for Parker. His t-tubes in his ears have been in now for over 2 years. The ENT is ready for them to come out since there is no appearance of fluid and there is no concern over any type of speech delay. It is out-patient surgery to remove them and put a small patch inside his ears to make sure everything heals correctly.

 After a quick park break after the first appointment…

We headed to the pediatrician for our pre-K checkups. Here’s the latest, including everyone’s favorite – their numbers.

Parker is doing good. He passed his eye exam, and they confirmed that he has some super-sensitive hearing. Good that he can hear great, not so great when you’re a kid that deals with sensory issues. While he does have a list of diagnoses that are included on his note to school, he is cleared and there’s no reason that any of them will cause him any concern as he gets started. His g-tube site has healed wonderfully and there won’t be any need for medical intervention at this time – he’s sealed up and great. He did get his finger poked for blood and 2 shots. He is not nearly quite the stud his sister is at getting poked so it was slightly dramatic. He is a whopping 34 pounds, fully clothed and with shoes on which puts him on the at 3% on the growth chart (and gives him a BMI of 0.2%). 

Payton is doing well. She passed her eye and hearing exam with flying colors. She also has a list of growing diagnoses that will accompany her to school. She will continue to be followed by the Hematology doctors for a while. If school starts and she is still receiving drug therapy for her aplastic anemia, we will then go on exploring additional factors to take care of with the school nurses, but right now we need to wait and see what happens. She again instructed her nurses on how to poke her finger for blood. Because the vaccinations they were to get this time are live virus vaccines, and she’s still immune-suppressed, she can’t have any vaccines until she’s finished drug treatment at least 6 months. She spent her time with Dr. Woodford telling him everything he needed to know and correcting him about everything happening with her. She is 46 pounds and right in the middle of the pack for height and weight.

So they’re ready. Kindergarten Ahead and registration are in a few weeks. We’ll keep you updated!

P.S. We stopped at mom's new work so they could meet my new work friends. They were very happy. This would be the college graduating class of 2033. 

So Long, Farewell

Due to several reasons (which I won't get into too much now), today was the end of an era.

Today, the twins had their last day Children's Respite Care Center. They have gone there for almost 5 years, every day. 5 years. They have in so many ways grown up there.

We shared our 1st birthday here...

 We got loved on here...

We practiced standing here...

We learned about books here...

We started to love art here...

We played dress-up with friends here...

We played here...

We made first best friends here...

We were serious and goofy here...

We had our first field trip here...

We had special snacks here...

We had teddy bear picnics here...

We laughed and smiled here...

Dear CRCC,

You have played such a huge role in our lives. You were the answer to questions when they were so young and still so very tiny. You loved them, cheered them on and rooted for them - and did the exact same thing for me. You listened, helped, problem solved, and cared for them. You helped them learn to crawl, walk, talk and eat...and do so better than they ever were supposed to. They have excelled and you helped steer them. 

You nursed them when they were so tiny, through so many procedures, hospital stays, ER visits, and new medicines and diagnoses and helped make them well again. And every time you helped heal them, you unknowingly helped heal me too. 

You,all of you,  are a sweet, caring, happy place for us and you will always be. I don't know how you being to thank someone or explain how grateful you are when they take such wonderful care of you and your children. All of you are like our family. Thank you will never be enough. 

Until we come back to visit....

Amy

When we focus on our gratitude, the tide of love rushes in.
-Kristin Armstrong

Graduation Day

Payton spent 6 weeks on a ventilator. She had pneumonia once wile still in the NICU, and 2 staph infections. She came home from the NICU on oxygen for 6 months. She was hospitalized for 5 days with bronchiolitis when she was 1 and came home on oxygen for another month. She was hospitalized another time with RSV. She's had pneumonia 6 more times since she came home from the hospital. I've lost track of the number of times she's been to the ER with respiratory problems. She had 2 winters of getting monthly Synagis shots hoping to keep RSV away. We spent 3 winters in lockdown at doctors recommendation.

Tuesday morning she had a follow-up with pulmonology. When the doctor asked if I had any concerns...I couldn't think of any. When Dr. Toni asked how the winter was...I didn't have anything to say. We'd gone all winter without any major illnesses, she's hasn't been to the ER, been on antibiotics or steroids. Payton had a wonderful winter.

Dr. Toni looked at me, teared up, and said she's graduated. We can call or go back if we need to, but otherwise, she's discharged. There were big hugs, a few tears and high-fives all around.

4 years and all that history later...she graduated.

P.S. - She weighed in at 41.5 pounds for her appointment. Exactly 40 pounds heavier than her smallest ever weight. :) Unbelievable.

On love and grief

Friendships between preemie moms is an unusual thing. We are brought together by one of the hardest, worst times in our life. Most of us have never met, but have been connected through our computers, with the hope one day to take some sort of wonderful vacation where we all meet, sit on a beach and drink fancy drinks out of a pineapple brought to us by a cabana boy (hey, a girl can dream). We know details about each other and our kids, we cheer on, pray, get angry, share advice, love and at times grieve. It is a strong bond.

Last weekend we grieved. Sheena, one of our moms, lost her little girl Laiken. After more than a 3 year battle, done with more grace and strength than I've ever seen, Sheena, along with her husband and other daughter, said good-bye to Laiken. I'm not sure how a little girl who's only 3 touches so many people, but she did.

While so many of us wanted to be at the funeral, distance doesn't always make that possible. After Laiken's service on Thursday, Sheena and her family did a balloon release of pink and purple balloons. So, that's what the rest of us did too. Where ever we were on Thursday, we call grabbed our little ones and pink and purple balloons and did the same.

The twins and I headed to one of the highest spots in town after dinner and let our balloons go.

Fly high Laiken!

If you want to know more about Laiken and her amazing family, go here - https://www.facebook.com/LoveForLaiken

If you want to see pictures from people releasing their balloons from all over for Laiken, go here - https://www.facebook.com/events/733817389971667/735094923177247/?notif_t=like

The results are in...

Since we've already passed the first official day of spring, and we've already crossed past April 1st (which will always mean the "end" of flu/RSV season  in my head), I'm going to officially throw this out there....

We went 6 months with NO hospital stays, ER trips, antibiotics, major steroid use or doctor visits outside of a few regularly scheduled appointments.

We had a few colds but everything we were able to manage at home and stay out of the doctor offices and manage all symptoms on our own. More importantly, their little selves were able to handle it all on their own. Even last winter, at doctor's recommendation, we were on modified lockdown for the winter.  This year we we had free reign.

Winter 2013-2014.....SUCCESS!!!

The big 0-4

The past week has flown by. So here is the week the dynamic duo turned 4 (yes 4! holy smokes!)

We started the week painting pumpkins and doing a few other Halloween decorations around the house.

For their birthday we picked up special treats to take to school and share with all their friends, teachers and nurses. I told them we just needed something that was happy birthday. I love how they turned out, and apparently they were a hit with all the kids.

I told them before they went to bed for the last time as 3 year olds that when they woke up their feet would be bigger. Payton didn't really seem to care, but Parker was very interested on whether that was really going to happen. The first thing he did when he woke up was stick his feet out and promptly inform me that they were NOT bigger.

Their first day going to school as 4 year olds. Sigh.

After school we dove into some of the leftover cupcakes.

 Friday night after school we went to the pumpkin patch to do a bonfire and hangout with the cousins. It was a beautiful night and we had an amazing time. Thanks Stacey for organizing and inviting us!

By Saturday afternoon we were all a little wiped out...

Sunday afternoon was the big party. A pink and purple princess cake and a chocolate cake with a car on it. Candy, pinatas, friends, family, cake (yum!) and a house full that love and support the twins. My grandma used to say "my cup runneth over"...now I know exactly what she meant.

By the way, they both got some new jammies for their birthday, so if anyone is looking for a couple little ones to have over for a slumber party let me know ;)