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!

When I'm worried and I can't sleep, I count my blessings instead of sheep.

I joined a Congenital Neutropenia group on Facebook. I know this is a severe condition, but Selene is doing so well that I had no idea how bad it can be.  Also, with people from all types of situations and different countries posting here, I found that there are so many struggles.  While it is easy to say "Why us?", I realize that once again, we are beyond lucky, even in this situation.

We are blessed....

1. Between our primary health insurance and a secondary plan through the state of Pennsylvania (I promise to never complain about state run liquor stores or taxes again) we have minimal to no medical costs.

2. Dan works incredibly hard so that I can be home with the girls.

3. Because I made the decision to stay home long ago (thus unknowingly adding a layer of protection to Selene while undiagnosed), we planned our financial life around that. Many neutropenia parents have to work and then stress over the sicknesses their children pick up at daycare.

4. We have so much family who readily help us.

5. We live so close to CHOP. Many families drives hours, across states, to get their children to specialists.

6. Selene has never been hospitalized.

7. Selene has no other compounding conditions/illnesses, which seems to be quite common with neutropenia.

8. We have two beautiful girls who absolutely love each other and will be there for one another always.

9. Ainsley will forever know the joy of saving her sister.

10. And finally, clorox wipes were invented and can be purchased in bulk. I have a feeling we will use millions of them in the next year :-)

....and I fall asleep counting my blessings.

Game, Set, Match!

Ok, we're the reverse order, but we've got the Match!

We got the call today that Ainsley and Selene are a match. Tears of joy! Initially I was worried about putting Ainsley through the donation process, but knowing that Ainsley is healthy and strong and that her marrow is a perfect match brings me more comfort that I thought possible. The fact that the success rate for a sibling match is extremely high doesn't hurt either.

We have our routine Hematology appointment on Monday, but it looks like it will be a little more interesting than "So what's her ANC, today?"

These photos were from Selene's bone marrow biopsy on March 20th. She was home and playing by the afternoon. At least now I know to pull out the video when they give Ainsley "giggle juice."

Blog Post Number One

There have been a few times in the past that I though, "Hey, I should blog." Then I remembered that I'm not funny or witty and have nothing interesting to write about. Then my kid got sick while simultaneously being the cutest girl in the world and I thought, "Finally! Something to blog about!"

In all seriousness, I'm just looking for a healthy way to work out my thoughts and feelings and maybe some online footprint will remain when Selene is old enough to ask details of what happened and how I felt and my memory of these scary times are fuzzy because I'm too busy living life with two healthy daughters.

So here it is. Blog post #1. Check.