God's Beautiful Creation!

I can hardly see Mila at all in this picture....it was taken almost 10 months ago. I am sure this is not the picture God had in mind when he created her...




But, I betcha this was!

Zoya's Birthday Part 2

We kicked off Zoya's birthday the weekend before with a visit from Uncle Bub and Grandpa and Grandma Gigi!

Presents from Grandpa and Grandma Gigi!

A big train! I will hae to take some more pictures of her playing with her train...she LOVES it!

The conductor!

Could NOT get them both to look at the same time!

Playing dollhouse with Grandma Gigi

On Zoya's birthday, Grandma and Grandpa B. came to visit! 

She loved all her clothes from Grandma and Grandpa B!

A cool pool from G & G B!

Mila hanging out with Grandpa B. for Zoya's birthday lunch at her favorite place!

What would a birthday be without a trip to the mall? :)

And we ended the birthday celebration with another weekend visit from Grandma and Grandpa B! The girls had some time to swim in the new pool!

A little hesitant to go down the slide!

No problem sending her new pool baby down the slide though!

And that concludes Zoya's fourth birthday pictures!!! Happy birthday sweet girl! I think 4 is going to be fabulous!!!

Ryan Update

I know many of you have been waiting for an update on Ryan. I'm just going to paraphrase his mama's words here. I'm closing comments for this difficult post and know you're all sending your well wishes even if you can't leave a comment!


At the care conference yesterday, Ryan's family, along with the staff of dotors, nurses, care givers, and pallative care collaborated to discuss this sweet boy. The staff made it clear to Ryan's family that there is nothing further they can do for Ryan. Anything they can do at this point would just prolong the inevitable and maybe even cause him more harm than good. They have made the excuciatingly difficult decision to make Ryan a DNR. That means they won't do chest compressions, use a vent, or do any further surgeries. His supportive care will be weened. He will come off of his medications, while staying on oxygen. They will provide comfort for him so that he is NEVER in any pain and he will be monitored very closely. No human can say for sure, but the best guess is that Ryan has weeks to two months left here on this earth. 


One of Ryan's mama's bucket list wishes is for people to allow their kiddos to eat banana splits for dinner! Something Ryan will never be able to do, yet something so simple and so fun that will bring joy and memories to your child and honor Ryan. If you want to participate, you can take a picture of your kiddos eating banana splits for dinner, and email them to me with your name and location. I will forward them on to her! (spbasile at gmail dot com). Hug your babies tight tonight! Tell those you love that you love them, and show them...tomorrow is not promised to any of us!

Ryan

One of the first people we met at Children's Hospital, when we were newly home, was Diane. As we stood outside of the airway clinic waiting to find out about the newest development and unexpected health issue with Mila, there was another mama sitting with her babe. I couldn't see him because of the angle of the stroller. Zoya, who knows no stranger ran right up and Diane said, "I think you and Ryan have something in common." As I peaked in at her sweet boy, this is the beautiful face I saw

Diane and I got to talking and I briefly shared our story of how Zoya and Mila came to be our daughters. She talked about Ryan's heart and how serious his Congenital Heart Disease was. We talked about Mila and her upcoming surgery and I told Diane how I was really stressed and worried because I had no idea what to expect and nobody from cardiothoracic surgery had even called me (other than the scheduler to give us a date which was just over a week away!). Within seconds she had the cardiothoracic department on the phone and passed her cell phone right over to me. She was clearly a mama who knew her way around the hospital and how to get in touch with the necessary people. I was grateful for her support and knowledge. But, now, I'm learning that knowledge comes at a cost. Having already spent so much time at the hospital with her son is what gave her that knowledge.

When Mila was recovering from Open Heart Surgery, Diane and her family were there as Ryan underwent his own procedures once again. We were discharged first and said goodbye to Diane and Ryan. They were discharged soon after. A couple weeks later, Mila ended up in the hospital with pericarditis and had to have another surgery to drain the fluid around her heart. When we left, Ryan had been admitted again. He was very sick. Up until that point the doctors had not agreed to attempt open heart surgery yet, because his situation was so serious and the risk was so high. So as we left, Ryan stayed. He ended up staying quite a long time and eventually had his open heart surgery. Against all odds, he eventually went home with a repaired heart. That was such a happy day for his family to see their son with a new heart and a new chance at life. Unfortunately he was only home for 9 days before they returned to Children's with complications. Ryan went in for a heart cath and a procedure to try to fix the problem and he has had a really tough struggle since. He is intubated and having trouble with his sats no matter what they do to help. His mama feels hopeless, rightfully so :(

They are desperately in need of your prayers. I know this blog has a lot of readers. PLEASE pray for Ryan and his family. Please speak the words they cannot even manage to squeak out. I cannot imagine being in this situation. Here is Ryan as he fights to get better! Miracles DO happen and I know a miracle is possible here! Please pray for this sweet boy and his family.

Zoya's 4th Birthday! (Pictures Part 1)

Zoya knows how to celebrate! We had a week long bash celebrating her 4th birthday! It started the weekend before with visits from Grandpa and Grandma Gigi and Uncle Bub, and then ended yesterday with a visit from Grandma and Grandpa B.

This is the first year Zoya REALLY understood that it was her birthday and it was SO FUN! She knew the day was all about her and she loved every second of it!

Excited to open her presents first thing in the morning!

The only thing she asked for was a baby and a baba! She was so excited for the babas!

A new pair of shoes!

Her favorite book....we had to get her a new one because the other one was so worn out!

More books!

This girl loves to read! Can you tell her mama is a teacher? LOL

She was "reading" saying "up up upstairs"

Burping her baby!

Look at that good mama! 

Feeding the crying baby

This was "the" book I picked out for Zoya's 4th birthday. I've gotten her one special book every year and written a little something in it that she can read when she is older! I love this book for teaching kids that even though everyone is different, we are all capable of doing great things!

"Jeesh Mom! How much tape did you use????"

Pushing her baby in the stroller!

If you're a loyal reader you'll know it isn't a party unless it's a "surprise" party! 

Zoya kept going behind the streamers, waiting for us to call her in, then cheering when everyone yelled "Surprise!" She sure makes life fun!

She is just as surprised EVERY.SINGLE.TIME! haha

I can't believe she's FOUR!

So excited to hear "Happy Birthday" song

Trying to blow out her candle

Clapping for herself when she blew it out!

Just so you're not worried about Mila...here she is! She was suffering from an awful rash yesterday :( But she did enjoy her cake!

She loved her special gluten free birthday cake! 

More pictures to come!