Hey he's a fun guy or is it fungi????

I need to start from the beginning.. 

But, the beginning is muddled so here is my best recollection..

Alex has been having fevers in the evening for a while.. Well, since September. We have been watching him closely and going in for regular testing and checks.. Nothing has ever come up and we just couldn't figure out what the heck it was. On Sunday he started to feel so yucky that we just weren't feeling confident in our home care. We were able to get a squeeze into clinic. I love that his team will just go with it and will lay their eyes on him. Eden went to our friends the Bates and I brought May and Asher along for the.... Eeeeerrrr.... Fun???? 

Because we were an add in, our appointment was kind of squished in here and there. Before that sounds like I am complaining, I am absolutely not. Because during our wait he started having chest pain, which set off all kinds of red flags.. What a blessing to be there at the hospital when that was happening and not in the car on the way home. 

Now we needed an EKG and echo... His amazing new heart looked fantastic... The tech who was performing the echo did notice something lower down. She confessed that she is not a liver gal and went to grab another set of eyes. This person saw the same thing but also only works with hearts. They decided to pull in Doctor Molina, who also sees this weird thing and is not a liver doctor. Alex is then admitted and an ultrasound is ordered for his belly. It is clear on the ultrasound that Alex has a mass. Now we need a better picture. He had and MRI...

The white part is the "concern". It's an abscess causing all the tummy trouble and yellow coloring. Things sort of went downhill. Alex's body is trying very hard to fight what we found out is a nasty fungus called Aspergillus. eeeeeewwwww..... this is a nasty nasty fungus. 

THE PLAN:

-He got a PICC line to start the crazy antibiotics

-He is currently being watched in the CICU

-He has a drain in his liver to get out all that fluid.

We just keep adding things to his "street cred" 

-Lasr, we have discussed the likelihood of a surgery to remove the infected area of his liver.

 We haven't made any final decisions because these discussions happened with me, and I would like daddy to hear all the information and we can make a decision together. 

In the mean time...

The girls have been off to play with the Drummonds, Bensons, Chenney's, Bates, Petersons, G&G Homer and Clawson. My little Ashy can't go into the ICU.. More for his protection since he won't be fully vaccinated for a few more months. So in the meantime he spent the day today with the Chenney's. You are all so fantastic.. Thank you for helping out in my crisis.. By far the hardest thing for this mommy is getting my little peeps to helpers and activities. 

This sweet friend is Craig. He has been to visit and help Gator get his mind off of being where he is. Today he helped Gator forget his hungry tummy before going down for his PICC line. He is so understanding and fun to visit.

Asher and I tried from home to make Gator giggle..

Don't worry everyone.. I laughed and laughed until Asher got me "back".

And we got a couple of Gator and mommy selfies.. 

Notice his amazing butter cream coloring.. Oh wait.. His totally yellow yucky color.. 

Looking forward to a nice pink boy again. 

Keeping this updated is super hard because of baby, girls and taking care of Gator sooooooo. I might be slow at getting this accomplished. But I am not trying to ignore you if I am slow at calling or texting/Facebooking you back.. 

A little of this

My Eden turned five. She is completely into having fun with friends, going to preschool, and is a great helper at home. She plays well with May (almost all the time, unless they both want the exact same thing) she just finished up her first season of soccer, she scored two goals at her very last game. She is doing a fantastic job at dance class. She taps and tumbles and does ballet. She can unload the dishwasher in about five minutes and scrub a potty like nobody's bad business. She is doing great at writing her name and can read every stop sign we see. Plus also, she informed me that my name starts with a B. I just love her so much. 

She has a couple of friends who celebrate birthdays right around hers. This year was a family year so we didn't do a party with everyone, and no gifts.. We just got the girls all dressed up in their princess dresses for a Princess punch party! They made sandwiches and cut them out with cookie cutters.. 

We painted nails and did makeup.. And they decorated cupcakes.. They all had so much fun. 

That evening we ate at Pizza Pie Cafe as Eden's choice and then went to Build a bear (you must sell your right arm to pay for it) did you know you can buy a closet for your pet? It's true.. 

She was so thrilled. She named her, Glitter. They share a birthday:) 

Alex did a story with Hope Woodside about organ donation. We hope others will be inspired to become organ donors. How hard it must be to think of organ donor while you are in the midst of grief. We are thankful everyday for our donor family. 

We are in the middle of red ribbon week. For Hero day Ry wanted to dress up like me.. I sure love that girl.. I told her to throw on some yoga pants and sling her shirt with baby barf.. 

Gator had about twenty people to dress up as, daddy being one of his, but settled on Doctor Su/Lal his cardiologists.. 

I think it's super funny when the babies can finally sit in this chair.. May calls this Asher's hippopotamonkey chair. 

Oh the details are a little muddy

Million Miles at Miller is a ride that I am happy Jeff likes to be part of. It supports Make a Wish. The kids love the finish line party so it's really fun to wait for daddy to finish this century. The kids did face painting, art, they hung out with the cheer leaders and cheered for all the riders that crossed. 

These dandelion wishes occupied two little girls for a very long time. Sorry to the place of business were we spread a ton of seeds for you.

Alex's mug will be in the Festival of Trees commercial. Watch for him. And support the Festival of trees if you can. Last year my sister in law did a beautiful tree celebrating my niece Jenivee. Mitochondrial disease took her from us way too soon. This was good and happy way to remember her. 

As we left the hospital after the filming, we came out to see this really cool bike parked in the terrace. 

We watched Goonies today between dance classes. Remember the chubby one that loves to eat?? Chunk??? I could totally call this little guy Chunk. And he is OK with that!

Monday Gator had clinic. His echo looked good, however his kidneys aren't very happy right now. There is always fine tuning with transplant kids. They explained that a normal child should be around .4 Alex is at a 1.2 . The best thing he can do is drink a ton of water.

*update

Hurray his number looks a lot better... Just a little fluid goes a long way.. 

I got my Halloweenie decorations up today. This is one of my favorite months.. I almost have May's costume done.. She is going to be cute. 

Baby boy

"To infinity and beyond" 

This little boy is getting easier and easier. He is into a routine, smiles more and doesn't have such bad tummy aches. 

He rolls all over and I have to lay him on the floor because he would roll off anything else. He also scooches.. What's that you ask? He arches his back and pushes against the floor moving into furniture and onto the hard floor.. Or if I completely leave him, he falls fast asleep. 

He isn't sure if he loves tummy time because it's so darn hard lifting those cheeks up. 

There is a first for everything

Eden and Alex are playing soccer for the first time this season. 

Jeff participated in Lotoja for the first time, on a relay team and caught the bug. He is pumped to do it solo next year if he gets drawn.

I managed to take all my short people to the IHH heart walk. We had a great time. This is the first year of doing it without Dad. 

Asher's blessing outfit photos

Thanks to the amazing Bethany Bee.