Happy Birthday, Ainsley!

Ainsley turned 7! It's been a lovely few weeks of celebrating her with all of our family.

She has been asking for a party with friends for two years. Last year the move made it impossible and the year before that was quarantine craziness.

So we invited her classmates and best friends and had a lovely time! The highlight though was the cake, provided by a local baker through Icing Smiles. It is a sweet (pun intended) organization that makes kids for kids and siblings who have gone through illness, etc.

So this cake was done by Erin Makes Cakes in Lansdale. We told her Ainsley wanted a Moana cake and she ran with it. We were thrilled! So many kind and generous people in this world, it makes me feel like I'm not doing my part. Hopefully some day I can pay it forward.

Ups, Downs, and more Ups

Oh gosh. Life has been a whirlwind. I apologize for not writing more! Besides the girls keeping me so busy, I had this moment of "I don't want to say or write these words!" I had too many feelings, fears and concerns to even talk about it. I didn't even want to tell our family.

So much has happened since then. We did one day of Imatnib and then we were told to stop since her liver numbers were through the roof. Not sure if you remember when that happened right after transplant (which I can explain using the words "a few years ago"), and we assumed it was due to medications and her metaboliziation of them.

We went back for a follow up a week after our "scare" appointment. Numbers were basically still the same and discussions of liver specialists and liver biopsies came up.  My head started spinning.  We went to get local labs drawn a few days later for one last check. Those numbers were half of the week prior, and I could even feel it in her joints, movements and her mood. We were all thrilled! So it's been holding steady for the last month.  Overall I'm really pleased with her health and strength. She's been running, playing, and almost keeping up with the big kids.

The only thing that drives me nuts is that she is suuuuuuuper timid about trying things. I don't know if it is her personality, her physical limitations for so long, or what the reason is.  So this summer's task is "teach Selene to at least try!"

We head out on a cruise to Bermuda this Saturday, so I'm hoping for good weather, no sea sickness and kids who will sleep!

And since it's been awhile-PHOTOS!

Ainsley completed her first Triathalon!

Proud Momma!

Aunt Grace graduated!

This kid is going to get her MBA, I just know it.

Kali turned 2!

My ballerina

Aunt Grace came to watch class!

Loving on our neighbor, Utley!

Ainsley's first recital!

Celebrating her 7th with Aunt Merlann!

my awesome helped to get rid of the horrible carpets!

I can't even believe this!

Mrs. Bauder has currently taught all 3 years of our pre-school life. I'm going to miss her next year!

Moms of Sick Kids

I rarely consider myself a Mom of a sick kid. Selene is happy and we lead a relatively normal life. But this video popped up in my Make a Wish facebook group today. For the first time in a long time, I cried myself to sleep last night over fear for Selene's health. So this movie hit crazy home.  Every single Mom that I know is a warrior. They do everything in their power to take care of their children. They pull strength when they are sure there can't possible be anything left in them.  But there's just something about watching your child suffer, about being strong for them when you don't know if you can even fool yourself.  Anyway, this gets you right in the feels. I'm thinking of all of those Mom warriors today.

Moms of Sick Kids

Ok, an update on Selene. Ironically, I meant to write a post a few weeks ago that would go something like "AHHH! NO MORE BAD MEDICINE!" I just kept forgetting to blog, or rather every time I had a moment I'd drink tea and binge watch The Killing instead.  Anywho. We decided to stop her Imatinib after fully weaning the steroids. It was glorious. For a week she danced around the house singing "I can't believe I don't have to take my bad medicine!"  I kept thinking I forgot to give it to her then would realize we had stopped it and a little feeling of relief washing over me.

We left that appointment with the caveat that we'd all be vigilant. Well, within the last week we noticed her slowing down. We noticed her body stiffening when we picked her up. Those slender little arms could no longer easily bend out of her car seat straps. I mentioned it to Dan and my Mom, both agreed they saw it all too. So we messaged her docs just so they'd be aware for our appointment next week. But they wanted to see her immediately. Our giggly Selene who always laughs and squeals for Ellen barely looked up. Another huge indicator that something is wrong. So after checking her out and some labs, we've decided to put her back on the medicine. My biggest fear, and motivator behind the tears (besides the general "I don't want my baby to suffer!"), is that this will become her normal, for the rest of her life. But Dr. Olson still believes it can "burn itself out." She's so frail and has been through so much, we are just going to hope that she needs more time to get strong and for her body to function completely like it should.

For now, I should worry about more serious things, like how she'll get affordable health care when she turns 18 and her magical PA medicaid program is up.

She was so charming the waitress made her a chai latte.

All decked out for a wedding!

Twirling

Captivated

This free spirit deserves everything <3

Enjoying Great Pappy and Gram's farm!

So much trouble in 13 years

She was super proud of her homework...then she told me she didn't have to turn it in.

Champ at the dentist! I can't say the same for Kalina.

Morning at CHOP

I was the captive audience of her Pony Show.