Mighty Max Update

Max had his cardiology appointment yesterday. Great news: his heart function has improved! And it’s improved so much that it’s considered in the “normal” range now!! We are thrilled. He’s doing so well, and they don’t want to see us again for another four months! He still hasn’t really gained any weight, but they’re not concerned. His Mom and Dad will chat with our dietitian soon about switching over fully to the toddler formula, and that should help. It was pretty amazing to see him playing around in the play area of the hospital where Min played so many times last year while he lived upstairs in the CVICU. He’s doing really great with his g-tube feeds and oral feeds and is even starting to tolerate some bolus feeds with the toddler formula (bolus is basically how a baby would normally drink a bottle in one sitting, but via the tube - meaning, it’s like 70mL in 10 minutes, as opposed to a continuous feed of 70mLs per hour, if that makes sense). It’s basically one big step forward with his feeds and will help his stomach to know what it feels like to fill it more quickly and normally.

We are so proud of him and are so relieved to get such a good report.

These two are just so in love with each other. They are absolute besties. Precious.

Max Update

Thought I would share a little update on this little boy...I should say BIG BOY!  He had his heart doc appointment on Monday came away with glowing reports that he is thriving!  The blood clot the were watching and is completely gone!  He is down a pound to 24 pounds but that is to be expected because he is mobile now.  He crawls all over the place.  

He's testing foods a little at a time, thank goodness and is one of the happiest babies I've ever seen.

His big sister is his best friend and they just play and play and play.  I watched Min while they were in OKC at the doctor and when they came back they tried him on the Y-Bike.  OH MY...he was able to peddle his little feet all around the house, with parents behind.  It was quite amazing to see.  Next up...walking soon, and FOOD!

What a champ our little Mighty Max is.

OKLAHOMA HURRICANE 2023

Oklahoma Hurricane 2023

That is what some are calling it because there were winds in excess of 100 mph on Saturday night.  (Forgive if I repeat.)  Our dear little Max is still in OKC Children's Hospital, now day I think 13 and he was on track to come home today.  Saturday his daddy, Nick, came back to town for a gig and to accept delivery of their new couch.  Saturday evening he pulled into the driveway and started to get his vibes out of his red Rave 4 when he said the wind nearly took him out, so he thought the vibes can wait, they will be okay, not him if he was hit with debris.  So inside he went and he had been in the house a few minutes when this happened.  

The neighbors tree pulled out of the ground and crushed both of their cars, absolutely crushed.  Honestly, it is one horrible thing but would have been a lot worse if he had continued on to get the vibes.  He would have been crushed too.  There are small miracles.

It was terrifying for Nick to be at home all alone, to have this happen, no power, in the dark, and he had never been in any of this kind of weather before, traumatizing.  I would not be surprised if he has PTSD from it all.

THANKFULLY the house received no damage, but poor little Min's backyard swing-play center is toast.

She was so upset to see her chalk all over the place.

Now, back at the "ole' homestead" we suffered our own damage.  Our massive oak tree in the backyard decided it was done with one of it's limbs.

It snapped and landed on the corner of our lovely back porch/patio.  This damage will push the need to replace the roof, which we had been putting off.

Luckily, the neighbor next to us is having a pool installed, roof, room addition and had immediate access to a tree guy.  We hired him on the spot but had him first to go to the daughters house to uncover the cars.  Our clearing will happen sometime.  It was most important to try to uncover the cars to see if they can find the car seat for Max to come home.  

Because both girls homes are without power we have a houseful staying with us.  Nick is staying in town to navigate the insurance system and see if he can get a rental because if not my car will be going to OKC and I will have Min.  Even if they get to come home they will have to stay with us because of no power.  There may be a lot of pallets on the floor and we may go to the cabin!!!  Although the generator is running there full time too and here.  Thank GOD we have a generator.  The heat index is supposed to be horrible today so staying in a house without A/C will be miserable and so we may also be housing B's dogs!  Hopefully we can get a small generator going at their house to work some fans.  

On the home note, little Max, who was to come home today, yesterday developed something.  They did not know what was going on with him.  The doctors suspected a brain bleed or infection or something else.  Poor Af was absolutely beside herself with fear for her baby.  She didn't know what was going on and since her car is here in Tulsa, and CRUSHED, she was stuck all by herself at the hospital dealing with whatever it was.  At a bit after 3 am this morning she sent a text saying that it's an infection and he was put on heavy doses of antibiotics.  Thank GOD!  It was so scary to think something else.  Hopefully now the infection will be kicked and he will be home next week if not sooner and that their power will be on soon.  

Another good thing is that is a go for the next surgery, the Glenn in 4-6 weeks when we start the Min sleep-over again.

Also, on the Dana front is that I did get to see her one last time on Friday.  She was coherent that day but I understand from her daughter and my daughter who went to see her yesterday that she is no more.  They've stopped all her medications that she has been on forever and she's only on pain meds.  She is not eating anymore.  This reminds me of Momma at the end.  Momma wasn't even on pain meds, she was on nothing.  The not eating will shut down all her organs so it won't be long.  So sad.

Loss and Hope

This week we say goodbye to yet another dear friend.  This guy, Tom, was a cabinite until he and his love decided it was time to move back to town.  They lived full time at their cabin, built new by them, for a few years.  We've known them at least 20 years, our weekend buddies.  They moved back to town just in time for him to do battle with cancer, which did not this time, unfortunately.  Oh my we missed him so much when they moved back to town but now, will miss him forever.  Tom was the guy who was quick to call The Hubby when we hit the cabin area to come over and smoke a cigar with The Hubby.  He would come over and we would talk books and life in general.  I will never fix potato salad again without him in mind.  He requested it time and time again.  

One of the greats he was, and ACCOMPLISHED.  His obituary in the paper yesterday was awe inspiring.  I had no idea he was a pilot at one time.  I did know he was a great lawyer, was once JAG for the military.  Quite a wonderful gentleman.  Tomorrow we go to say a final goodbye to a great friend.  Lots of prayers for his wife Peggy as she has been through the wringer of emotions and loss lately.  A month ago she lost a grandson and now her dear husband.  

On to some good news.  This big guy is close to coming home this time.  He's nearly 14 pounds now and next Tuesday will have another procedure on his GJ tube and the plan is he will be home later that week!!!

There is the distinct hope he will be here for Easter and we could not be happier.  Our dear Maximilian, our warrior.