Sweet 16!

Wow! Where did "Baby Ayden" go? So much growth and maturity. He can pick me up, and hold me. He can have real conversations. He knows what he wants and advocates for himself, like asking for a new phone often. He even takes the trash out without asking, does your teenager do that? 

That night, after the stroke, when the encephalitis had a hold of him and the reality of just how bad he was set in, I prayed for 5 years...Why? 5 who knows. My own foolishness thinking I could make a deal with God. He already had a plan. He already knew how much happiness Ayden would bring to this world. He knew there were just some people that needed Bubba in their lives, even more than he needed them. I just remember saying I wasn't ready to let go yet. I really didn't know what his life would look like, but if you know me, you know I never imagined this. He is a teenager, he stays after school for practice, teases with his friends, and he just got fitted for his letterman jacket. He is just so independent, when I drop him off at the HS he doesn't want me to walk in and if I do he makes sure I know that I can leave as soon as possible. So much teenager, but still my boy in so many ways.

I don't think he will ever outgrow birthday parties. We had his family party Saturday complete with a taco cake from the display case at Meijer. He has had his eye on it forever and he was so excited to pick it out and bring it home. We had the perfect weather for him to enjoy his new swing outside. At 5'11" he was getting a bit too dangerous swinging in his old one so he has a big red bench now...BUT he isn't interested in sharing in to be clear, ha! Tonight, is "Mexican with the robot!" We will celebrate his real birthday with dinner at his new favorite place to eat. 

Health...He is good. Have we seen some seizures like stuff recently, a bit. He is growing, he is working muscles afterschool, and he is being challenged at school. With all this change some electrical discharge is expected I think, but we will check in w/Neuro in Feb. just to be safe.

We are happy and blessed. He is 16!!! I know the next few years will bring some tough decisions and plans, but they now will be filled with some real high school memories too. We will be busy, but we are trying to soak up all the opportunities while we can.

Happy Birthday Bubba George! ❤️🧁🌮

Such a Great Summer!

 Where do I start? Maybe where we left off... Ayden was able to visit with Dr. Lew in Wisconsin the Friday before Camp Riley and the quick brain showed that the increased ventricle issue(that was found in the ER and remained status before we left Milwaukee a few days later) had resolved. No surgical intervention needed which meant "ALL CLEAR" for camp! 😁 He had an amazing time, and wants to go back. The only concern was they wanted him to communicate more, but I think his shy side probably trumped his first time at camp since 2018. We have no regrets trying it again and I am glad he still has 3 summers left to attend. In his words: 

I went water skiing!

I went ziplining!

I put a pie in his face!

Needless to say his smiles say A LOT!! 

Now to some very exciting news: Ayden is changing schools next year! He will be headed to Dekalb High School. He visited his new school on Friday briefly as we walked around he talked about it being a "big school". He is excited to meet new friends and enjoy a new experience. This will be a crazy year for us all as Nessa will finish her senior year at PH and I am changing gears just a bit to start a new challenge as well. Next up will be "the Big Fair" as he calls it. The one thing Ayden missed while at camp was fair time, but he will get his fill of ice cream, tram rides, and grilled cheese at the State Fair in two weeks. 

We ask for prayers for continued healthy days and a successful start with a lot of new faces in the coming weeks.  

He Keeps Us On Our Toes

When Nessa and I came home from church yesterday we found out that Bub decided to make Fathers Day extra special for his dad. Poor Justin had to clean up some big messes. According to Ayden George, "My brain hurts." He followed up that statement with some vomiting mid breakfast and spent most of the day just resting. Around 6 PM he started round 2, but each time he seemed to feel better and perk up a bit afterwards. No fever, had me thinking about his shunt so we headed to Parkview. Justin enjoys a good Father's Day at the hospital, certainly not his first. The ER worried me at first because the gal who checked us in said, " I am not familiar with a vp shunt, so like what do you need?"  Fortunately, we were blessed with both a great nurse and a fabulous doctor. They found that the left ventricle was enlarged from his previous films. The problem is they can't help beyond that. They would have transported Bub, but I preferred to take him. They wrapped his IV, and after stopping home for luggage we headed towards Milwaukee at midnight. We made it to the ER at Children's by 3:30 AM their time.  We have tested and waited off and on ever since. We are on the Neuro floor which is good but our neurosurgeon is on vacation this week. 

Bub has been Bub, flirting with people, laughing, joking, you know everything that would tell you he is clinically just fine, and makes us look crazy. He hasn't vomited since meds were started at the ER. Today the decision was to let him eat and see how it went. He has been great. 

Are his eyes sparkling? NO. 

Is he grumpy? Yes, off and on.

Is he tired and a bit unstable? Yes, but did I mention the no sleep thing. I think you have to keep that in mind.

They have confirmed the ventricle is larger than his normal, but the neurosurgeon assigned to him said she likes that better even though he is used to a different baseline/normal. He does not have imaging that shouts hydro like he did with his last shunt revision in 2017, so it is not an easy jump into surgery.

Right now we are scheduled for surgery tomorrow, but as long as the vomiting has stopped and he seems "ok" we may just head home and watch him. I like the latter of the two choices because surgery means no swimming for a bit during the hottest days of summer AND it could jeopardize his trip to Camp Riley in a few weeks. On the other hand, it was 11 years ago almost to the day that we were planning for discharge, his shunt failed, and he ended up in a chopper the next day. We will do what is necessary, but I have to be honest and say I prefer "our" surgeon make the call. 

Praise God I was able to drive through the night to Milwaukee without sleep! 

Our prayer focus is for the doctors to find the "right" answers and path for Ayden George. Sis is in Lafayette right now and Justin has to be home for the horses and work, so also pray for both of them as it is hard not to be here with us. 

I hope to post that we made it home by tomorrow evening, but we will see. 

Thank you all for the continued prayers for Bubba George. ❤️🤍❤️