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.

Happy New Year - 2024

Rang in the year with Snicklefritz.  Last year we missed hanging because The Hubby and I had the nasty flu, this year, all good and healthy!  She and I watched Harry Potter, played several games of her new Uno game and had glasses of sparkling grape juice.  I'm a light weight because we both hit the bed at 11, ringing in the new year with the TV and NYC.  She was okay with that because she seemed tired too.  

Of course I was up early, as usual but it was the quiet time I like to journal and just be alone.  

It was time to start my new journal of the year.  Last year I went through 3 of them with all that happened.  It was an epic year.

Later I started the dismantling of Christmas and was ready to have her help when she woke up.  She's always such a huge help for me.

These ornaments are my prize collection.  For years now I've worked on them and so far I have 82.  I am very careful packing them away, wrapping them in tissue and they stay in the top box, my legacy to my girls.  We got it all cleared out and even had time to start a new jigsaw puzzle before her momma had to get her.  She will be back tomorrow though.  

Later for dinner we enjoyed steaks, a gift for Christmas from friends and black eye peas, my favorite.

Catching Up

Lots of weekends to chat about here.  This past weekend was a chili cookoff at the wigwam.  There were some very yummy chili's to sample and vote on.  I made a vegan version, trying to up my game in the vegan world for my kiddos.  It was very tasty but didn't win.  The Hubby even saw one of the cabiniters look at the sign "VEGAN CHILI" and sneer, he thought that was so funny, I did not.  I'm trying to be supportive, he is NOT!  

Then after a quick 40 winks of a nap I headed to a ladies only meet and greet at another cabin.  Such fun and so many ladies there.  Got to meet several new cabin owners which is always fun.  The weekend was rainy, rainy, rainy and chilly, still is.  Fall and winter are here with a vengeance.  We've not really even had a fall or a spring.  All we get lately is hot and cold, none of the lukewarm stuff we love.  The weekend before the skies were stunning.

Last weekend I had a girls weekend at the cabin with two of my oldest friends.  Actually there should have been four of us but one was not well and spent all weekend in bed.  Dang it!  Honestly we didn't do much except sit on the screened porch by a fire, watch the multitude of birds, read books, eat my first go around of vegan chili and talk and talk and talk.  It was so relaxing.

Also, a couple of weeks ago Max and family hit the big OKC to check out how he's doing off oxygen.  This boy is a tank and doing so well at 9-1/2 months and 25 pounds, that and he has sort of been released by the surgeons and just considered a cardiac patient.  

They go back today to again do an ultrasound and to fix his feeding tube he tried to pull out.

Yes, he's getting rowdy and that is such a good thing. We've had Miss Min since last night and most of today while they make the trek yet again, once a month now.  It might be a longer day because of the feeding tube thing.  

It's finally kind of getting back to normal around here.  His momma, our daughter, has been so relieved that she is now pursuing a dream of hers, to start a caroling company here in Tulsa, The Tulsa Carolers!  She has hit the ground running and is booking tons of gigs.  Yesterday she was interviewed and had a photo shoot for Tulsa People Magazine!  They found her!  So exciting.  You go girl.

Now that November is upon us that means,  Yes I know Halloween is tomorrow night but that just means Thanksgiving and very quickly Christmas!  I always do the family Thanksgiving so that needs to get planning and I've already started Christmas shopping for the grandkiddos!  I also said Yes to being one of the hosts for our annual progressive cocktail party at the cabin. We were going to last year but with the the impending birth of Max we didn't know when he might show up and I couldn't commit.  So this year I did!  We've NEVER decorated for Christmas at the cabin so I have to get that started.  I have another box of decorations in the attic I told The Hubby to get down and he was reluctant to rummage around in the multitude of boxes.  I told him that if he got all the rest of the boxes of Christmas down, plus the extra tree that is up there I would PURGE!  I need the extra stuff to take to the cabin INSTEAD of buying more!  He was quickly on board.  The attic is cooler, he can do it, I CANNOT!  I can sort of climb the ladder but standing up there is not my bag, AT ALL!  I have before but hell, I'm older and dang heavier, not a smart idea.  I may pop my head up and direct him if I need too, I think I can do that.  

This cocktail thing each host house on the progressive thing is responsible for a cocktail to serve.  I'm not much of a cocktail making person so I thought I will do prosecco and cranberry juice with floating cranberries.  It's festive and quite yummy.  I've already bought plastic champagne flutes, cinnamon scented tea lights and luminary bags to put along the walkway and the fence line.  I think the smell of cinnamon in the air will be quite fun.  Just had a thought about cocktail napkins....Oh this mind of mine.  I'll let you know if I can make happen....Later gators.

Happy Labor Day Weekend

Happy Labor Day Weekend.  

I've chosen to stay in town this weekend while The Hubby is on a guy trip to Colorado.  Good for him.  Yesterday I decided to do a figurative workshop in town, a one day event.  Frankly I was quite disappointed in how it turned out.  The morning "instructor" came in looking like the cat dragged him in and complained he didn't sleep much, up late painting for a show, he said!  He started to talk, kind of hem-hawing around and sketching a model that sat for him.  He was using an extremely light pencil, so light I could not see ANYTHING he was marking and I was sitting close.  Half the time he just tentatively drew without talking.  I nearly went to sleep.  Then the last 30 minutes of the morning we drew the girls head.  I didn't do too bad, and it looked like a girl, just not that girl.  LOL!  He never looked at what I did to critique it, not once.  The time was up and he was out of there.  Lunch, which I brought then we were to have a "long pose" with the same model.  She models like this for a living, nude modeling, all over the country and actually world.  WOW!  Back from lunch she was set up on a chaise lounge like thing, nude for an entire pose but the bad part was it was the same view I had from 3 hours of the morning!  BORING!  I started over and over again and really got too bored from it all.  The last hour and a half I just did her head, even left-handed as I nodded off then finally I just packed it up and looked at my phone.  I really like the quick poses that make you make marks.  I don't think I am a long pose kind of gal really.  Or could be the set up was just not inspiring me at all.  Oh yes, I'm glad I did it, got to hang with artists, but, probably not again.  I'll still do the Thursday evening gathering, I love that, but taking an entire Saturday, maybe not.  I don't even have anything to show for my trouble. 

Life carries on.  I cannot believe they are all in their happy little home and trying to get back to the new normal.

 

Max & Min #2

Well, yesterday is in the books...DONE, DONE, DONE!  And according to the doctors it went very well.  Little Max is resting, not so much comfortably but resting with a lot of meds onboard.  The new blood flow to his brain will cause some intense miserable headaches for a few days but they will pass.  Now we PRAY that the healing keeps up and he can go home soon and WITHOUT OXYGEN!  We need to him to be able to be a normal, or somewhat normal little boy.

Min is also doing great, although the 5 am wakeup call two mornings in a row has got to stop.  Today she started preschool again and she was just so excited to go.  I do hope she gets a nap like yesterday but with her class.  

Here's to the future and whatever it holds, only good stuff please.

Max and Min - PRAYERS

Good morning.  It's 7 am, yet I've been awake since a bit before 6, along with MIN!  Yup, she is once again our house guest.  Her daddy came to get her Thursday and The Hubby and I had some alone time till yesterday evening.  Her daddy headed back to OKC to be by Af's side and Max's bedside.  Today is his surgery day, the 2nd of 3 he will have.  This one, the Glenn, shouldn't take but a few hours and he will not be left open like the Norwood, the was the day after his birth.  He will also be extubated before he is out of the operating room, again unlike last time.  His recovery should, SHOULD be about 7 days, unlike the last time of 90 days.  Please pray all goes according to plan and expectations.  It's very nerve wracking for his parents and all of us who can't be at the hospital to support.  Little Max is 8 months old now and such a bright light. He loves to sit up in his bed, watch cartoons and play with his toys.  He's ready to move on with his life!!!

Min got her cast off last week and is getting around so good now.  She even rode around on her tricycle on the back porch last night.  Today I take her to meet her teachers at her preschool and tomorrow she starts school!!!  Eventful week.

 

Big Blue Eyes

Good morning.  Look at those bright blue eyes.  Max is doing good and just biding his time till surgery.  Can't wait to hold and snuggle him again.

https://www.gofundme.com/f/MaxMancini

You will NOT believe what happened Sunday.  They got a "new-not-new" car for both of them to replace the crushed ones.  Nick got his two weeks ago and Sunday he was heading back to OKC to be with Max while Af stayed with Min.  He didn't even make it out of the city when the "new" car made a huge banging noise, and started spewing fluid and multiple warning lights started to light up!  Catastrophic Engine Failure!!!  Something to do with a water pump.

Can the heavens please give them some better luck PLEASE!  It is absolutely crazy what is going on with their life right now.  I'm taking it that there is something more, greater for ALL of them in this life.  

The past few weeks Snicklefritz has been coming in the mornings to stay while her parents are at work.  We've done things like paint, clean up paint, clean out under my sink, my makeup drawer, get donuts, out to eat for breakfast, etc.  Monday (I've been telling we would do this for weeks) we dug into my trunk.  My trunk or as it used to be called "Hope Chest" is in her room when she comes to stay.  I have all kinds of junk in there.  My mother's wedding dress and veil, my wedding dress and veil.  I have letters from friends and pen pals over the years, collections of poems I collected in high school, trinkets, clay work I did in art class over 50 years ago.  Just plain junk.  I even have the back pocket of my bell bottom jeans that I wore completely out.  It was my initials I embroidered but some called it initials for Cute Butt!  

She kind of got bored with some of it and that is totally okay.  I also collected sayings and hung them on my wall.  I loved this one:

and especially loved these.  The last one would have been my mother's mantra.  

Today she is going to spend the night because this getting up early during the summer is getting to her.  HA!  I will totally let her sleep in as long as she wants tomorrow.  Today we will go to the studio again and paint.  Yesterday I spent so much time paying bills and running to the post office and bank that I was not in the mood.  Today is paint day.  Need to finish a landscape and another I've started.  

This is the second day in a row that I have not been awakened by my glands swollen in my throat!  I think I have finally overcome whatever was happening in my body.  I still feel a tiny twinge in the gland and will take some Tylenol to head it off from getting started swelling but I think the tide has turned, only 2 months later.  WTF!

Broken Leg

I'm sharing the latest from our youngest daughter about her oldest, Min.  This is ABSOLUTELY the craziest thing.  They CANNOT catch a break.

"Well…I can’t write this s***. Minerva broke her leg.

She went to a birthday party this morning in Tulsa…one of only two parties she got to go to this year. And within two minutes of being there, she broke her leg in the bounce house. I wasn’t there, Nick was, but they called right after it happened. Apparently a bigger kid landed on her leg. Hard to get a straight story. It was hard to gauge the damage because she wouldn’t let us inspect it and was very upset. We thought she was just shaken up by all the chaos of the party/our life right now. So they left and started to head down here to OKC like we had planned. (I’ve been in OKC since Thursday). She wouldn’t straighten out her leg or walk on it. By the time they got here she was pretty inconsolable and it was clear that it wasn’t just emotional upset. No (almost) four year old would commit to such a show for so long. So we took her to the ER at the same hospital Max is at (again, if you’ve been following along since her pink eye last month). After many pain killers, screams, and X-rays we saw that she had indeed broken her tibia, straight across. Nothing displaced, thank God, but she will have a cast for four to six weeks. She’s in fairly good spirits, but the multiple pain meds make it hard to judge her state at the moment. At least we got some good laughs and video for the archives. These will go in a scrap book for sure.

I don’t know what to say at this point other than we are hanging on by a thread. Our GoFundMe is still up, we need all the prayers, and a stiff drink or two.

Thank you all."

https://gofund.me/1a5415de

I've written here before about MY broken leg at age 11 so I can totally sympathize with them, with Min. Weirdly the week I got my cast off was when my grandmother broke her ankle in Hawaii!

Tomatoes, Sketching and Health

Well, well, look what we got here...home grown tomatoes, MY home grown tomatoes.

The Hubby and I (my suggestion) put in two plants at the office where there is full sun, only grass and a sprinkler system, AND it is fenced with no access from potential thieves, except possibly a dadgum squirrel!  Those two plants have given us about 10 tomatoes, huge tomatoes.  So yummy.  Can't wait to plant more stuff next year!

I am still sick, yes STILL SICK.  I have had an off and on sore throat since the first of June and I cannot seem to get rid of it.  There is more, sniffles a bit, drainage, slight cough although that has gone away.  Every morning I never know how I am going to wake up, feeling okay or like I've been hit by a truck.  Yesterday I felt pretty good, this morning, like crap.  I had yet another video visit with my doctor and we tossed around the idea of strep throat and even mono!!! YIKES!  I really think it has been a combo but mostly a sinus infection.  I'm feeling a tad better since I took a shower and got cleaned up but with a slight headache and of course the ever present sore throat.  I am so over being sick and today there is a complication on my healing process.  They have to take Max in to get his G-tube converted back or added back the GJ-tube.  He has such a problem with reflux and vomiting, especially right after he gets his meds (not a good thing for a heart baby) that they've got to do something.  He's also losing weight because of the vomiting and they need him strong for surgery August 3.  Well, the last time they went in for a fix of that he was in nearly 3 weeks and Minerva was here with us for that 3 weeks, I was sick that whole time, the storm, sister passing, etc... Can't say I'm too keen on this happening again.  They have an appointment today and the rub is my still being sick.  First we don't want to pass any kind of germ to Min or to Max and second I NEED to get well.  So they've been trying to find some kind of help to care for Min.

UH, she just called and Max is throwing up blood, they have got to hit the road, RIGHT NOW!  I was getting ready to walk out the door to get some lab tests done.  I want to help but I'm caught in a catch 22 on this thing.  I feel helpless but I have GOT to get this illness thing figured out and get some rest to heal.  

DAMMIT!!!

I was able to get to the studio this week, twice but I see that is getting ready to end again.  I'm still sketching and water coloring at home.  The intent of the sketching is that I signed up for Thursday evening a sketch class but at this point, that may not happen...

Cancer SUCKS

So much going on in my/our lives right now.  First of all, little Min has been living with us since last Wednesday.  Honestly this time around she has been quite enjoyable and probably would be more so if I was feeling better.  Last week The Hubby started getting sick and Friday finally went to minor emergency where he was diagnosed with bronchitis.  Then Saturday morning Little Miss Muffet woke me up at 2:30 in the morning screaming GRANNY!  I rushed in there and noticed my throat feeling a bit weird.  Well, dang it, I'm sick too.  It's been mostly in my throat with just soreness but from Friday to Monday it didn't get better so I did a video call yesterday with my doctor and he sent in an antibiotic and told me to take Mucinex DM for the little cough and congestion that was starting.  Starting it is.  Good GRIEF!  This has been the slowest moving whatever it is.  I believe it's an upper respiratory, not bronchitis like The Hubby.  I am PRAYING, absolutely PRAYING that Min does not get it and so far she seems fine, so far.  Because if she does she will be with us longer than this Thursday.  

Don't mind saying that I'm burning out with this childcare thing right now.  It's probably because I am sick.  Oh, the reason I have her is this little guy, or should I say husky little guy!  Max had to go into OKC for a quick change out of his feeding tube contraption in his belly but they ran into lots of problems.  Finally, they got it going with a different kind but wanted to keep him to see how he would tolerate the feeds back into his stomach that had been basically shut down.  That meant staying until today when they were to do an already scheduled cath procedure to balloon and to check out his lung function to see if he would be okayed for the next surgery in October or put on a transplant list.  We are on pins and needles with this.  At the minute I'm writing this he is in the procedure and we wait.  Such a sweet happy little boy.

Now to the toughest news of all.  I'm not sure if I posted about my little sister, Dana, but Dana has been battling cancer for nearly a year now.  She was diagnosed with lung and liver cancer, terminal, inoperable but was doing chemo and getting ready for radiation.  She first went to the ER because of severe back pain and found out one of her vertebrae was collapsing so they put surgical cement in it and on she went.  I'm telling you, from the beginning I said I thought the cancer was there too.  Well, she's had a couple more stints in the ER/hospital, one with an ambulance ride.  Dana HATES, DETESTS hospitals and for her to willingly go is a big deal.  About a month ago she went in for pain and most of the use of her right hand.  This time it was more pain and loss of use of both hands and she can barely walk.  Her husband has to help her eat, go to the bathroom, etc.  We got news a couple of days ago that the liver was fully engulfed with cancer and it was pushing on the spine...I THOUGHT THAT!  That is why she is losing function of her extremities.  Either today or tomorrow she is being sent home with hospice. My baby sister is dying.  

I am more than devastated by this.  I knew the cancer was terminal from the onset but when it is down to the wire it is hard to take.  I need and want to see her but with a three year old in tow I can't right now.  If all goes to plan with Max I hope to see her one last time.  GOD, that's hard to say.  Both my girls were able to go to the hospital to see her and that makes my heart happy.  My brother flew up there the minute I called him to see her.  Her kids have been with her.  

SHIT SHIT SHIT!!!!!

Also, our Aunt Sharon, one of two siblings left of Daddy's is battling lung and breast cancer.  She is to have a mastectomy soon.  I'm really not sure how much more I can take.  My heart is breaking in two.