A day of news and updates

When we had our anatomy ultrasound the day after Christmas they found Choroid Plexus Cysts in the baby's brain. The call followed a night of taking Selene's temperature 100 times because it was just over the "Take her to the ER" mark, but we were in Indiana, and I didn't know what to do. It felt like everything was falling apart all at once.

But I chose not to worry (to the best of my ability) due to this being extremely common and usually no big deal. Today our follow up ultrasound gave the all clear. Everything is perfect, the cysts are gone and we were even able to find out (due to a contrary crossed legged baby last time) that we'll add a third girl to our family!

I guess a finished basement/man cave is now at the top of the "requirement" list for house hunting :-)

I also received a call from the Bone Marrow unit advising that they had dates for us! Pretty much exactly what I imagined, Feb 26 will be the date we're admitted. Then March 9 will be Ainsley's harvest and the transfusion of cells into Selene.

Prior to that we'll have two full days of testing and education. That sounds daunting, but at least everything is moving along right on schedule. Which is good since this baby is measuring with a due date two weeks earlier!

I knew this was happening, but having a date is has made it super real. Continuing to thank God for all the good in our lives, we need it!

Also, thank you to my beautiful and thoughtful cousin who set up the YouCaring page and to all our amazing supporters who have donated. I found a cleaning service who is amazing, uses green cleaning products and works for lots of families of cancer patients, etc. so she is completely comfortable following all the crazy rules we'll be under during quarantine. I can't even tell you the relief this lifted burden brings!

Feeling so blessed.

Greatest u/s photo ever. Baby girl flashing her muscles!

What is Love?

Love is when you can't decide whether or not to publically announce this huge happening in your life because it's so private and difficult and overwhelming.

And then friends whom you haven't seen in person in weeks, months or even years take a moment to say they are praying for you and support you.

I agonized for months over whether or not to even discuss this. But ultimately, I think that 6 weeks in the hospital will be unbearably lonely and stressful. And that pulling Ainsley from preschool, and staying home for months will be equally hard. And then we'll welcome a beautiful baby and add all the joyful exhaustion that goes with that little one. And Selene will be sick, and lose her hair (well, what little hair she has :-) ), and I didn't know how I could bear to hide all details of this for a year.

So thank you, from the bottoms of our hearts, for the outpouring of love and the prayers that are coming our way. I've said this a million times, but I can't believe how blessed we are, even in a situation like this.

Here's to 2015

2014 was a year of amazing happiness, joy and experiences. At the same time it started a path we never expected to travel with our children.

2015 will be a year that brings new life in more ways than one, great fear, great joy, anxiety, prayer, faith, and trust.

My Timehop yesterday was 5 years of "What an amazing year we had, can't wait to see what the next brings!" I can honestly say that I have never wanted to be on the other side of a year more in my life. My hope is that NYE 2015 will be of our family of five, lighting sparklers, drinking sparkling cider and thanking God for a year that brought health, healing and joy.

But in the meantime, we will gather strength we never knew we had. And we will rely on faith in God to protect Selene, to guide her doctors, to give Ainsley the courage she needs to be an amazing big sister in so many ways, and to bring the safe arrival of a precious new family member when we are in the height of quarantine and waiting. And of course relishing in thankfulness at the support given by all of our family and friends, who helped us survive what will most likely be the hardest year of our lives.

So, here's to 2015 and all that it brings.

I would be fired!

If I were paid to blog I would be fired. But I think what my absence means is that Selene has been doing so great and has been such a normal kid that other than the three minutes a night when she gets a shot that I completely forget that I have updates to give.

But that said, we are moving forward. This week we met our transplant doctor. He was smart, calm, reassuring while reminding us there are risks. Her young age and health are her biggest assets right now for a successful outcome. We also got to see the match results for her and Ainsley. It was amazing seeing those identical numbers, one after another.

I've been doing so much reading and researching that it's all become real and scary and not all at the same time. I just realized that she'll have a port in and that I'll need to clean it and flush it at home for weeks. So that is overwhelming and terrifying to think of. That she'll be attached to IVs, and tubes for weeks. But we will get through it.

She continues to celebrate her 2nd birthday with lots of presents and sweet treats and she loves being "twoooo."

More to come sooner than last time!

Penn State Birthday Tailgate!

Bundling up for a cold and fun party!

Same old, Same old

This is why no one would pay me to blog professionally. There really isn't anything new going on.  The girls are happily enjoying summer.

Yesterday we had a team from Early Intervention come to evaluate Selene. At this point Ainsley was speaking in sentences, singing songs and strangers could understand her. Selene's words take me a minute to understand and until a month ago she only had a few.  I made the appointment right before my family's vacation and then she boomed while away. The speech pathologist mentioned that is quite common. I noticed it happened with Ainsley every time we spent a week in Indiana, away, etc.

Well, Selene engaged with the behavioral specialist, they watched her play with Ainsley, she talked, they listed all the words she could say, and that they heard her do. And at the end not only did they say she didn't qualify for services but that she was above 100% in every category, which they see 1% of the time, so they were pretty excited.

Thankfully I warned them at the beginning that I might be the crazy mom. But it was so nice to have their reassurance that she is beyond perfect in cognitive, social, motor skills, etc.

And while Selene is developing perfectly, Ainsley is developing perfectly into a little "teenager". We're working on the attitude and disobedience, it's not fun and I'm afraid it's only just begun!

Cyclops at her good friend Bella's birthday party.

Selene got the hang of the pinata pretty quickly.

4 going on 14

HVAC, Hot water heaters and cable, Oh My!

It's been a crazy week here. Our HVAC system was a few years beyond it's lifespan and the Polar Vortex did a number on all the heat pumps in our neighborhood. If you are in heating/cooling, you should hang flyers in our area.  The girls thoroughly enjoyed watching that process and have spent countless hours playing with the styrofoam packing pieces (they were hopeful for the huge box too, but sadly it was left out in the rain).

Then yesterday I had to handle Verizon coming to set up our drastic move to basic cable and internet only. We've been feeling fairly gluttonous spending so much money on tv watching and felt it would do us all some good to scale back on the channels, HD, etc. Thank goodness for the PBS and Disney Jr apps though. On the bright side, our techs son was a Penn Stater, you really do meet a fellow Lion everywhere you go. So between that and their military service we had much to chat about as he worked (while continuously asking me to confirm that I was indeed aware that I would not have DVR, onDemand, a fancy box or HD...yes, I'm aware).

And while Verizon was going on Hot Water Express came in to replace the hot water heater that almost burned down our house. Thankfully companies don't like when their products almost do things like catch fire. So they were more than gracious in paying for the complete transaction. And since Rheem took over the GE water heaters we even got a bit of an upgrade.  Though the upgrade was not worth the 5 days we spent with no hot water. I take for granted the ability to have hot water pour out of a faucet.  Heating pots of water for hair washing, dish washing, and dirty face washing got old after day 2. Laura Ingalls Wilder might be my new hero.

Due to all this madness in the past three days Selene had 0 naps . Needless to say I was pretty excited for naptime today. I probably should have spent more time cleaning and less time laying on the couch, but so it goes.

And despite being a stay at home Mom I still get super excited for Friday. Especially Fridays that bring my Aunt Merlann for a visit!

TGIF!

Four posts in and I don't have a witty title.

We had an appointment with our lovely hematologists today. They are thrilled with Selene's health and so are we. Her ANC is 1500, I sometimes wish she hovered more in the 2000s+ but she is doing well so I can't complain!

Looks like we are all aiming for a spring transplant. The oncology team offered to do it at the end of summer, but I just don't think that gives us enough time to get our lives together. I think our quality of life will be better if we can get through the winter with all of the family holidays and then go into this fresh and ready. I also think it will be easier to be "quarantined" when we have the ability to take walks and be outside while still being away from crowds. Really, I'm just trying to convince myself all the reasons I'm not ready to take on this challenge yet.

Also, Selene continues to schmooze the phlebotomists. She barely flinched when they took her blood today (it doesn't hurt that they are ridiculous pros and get blood from her tiny rolling veins with a quick slip in of the needle) and then happily chose stickers.

All is well today!