MOMENTOUS DAY!!!

This is from our daughter about our dear Mighty Max!!!

We’re going home in the morning! Seven weeks since our initial admit with Max vomiting blood, the discovery of a blood infection, a clot, and an open heart surgery. We’ve spent 161 days in the hospital this year and only 75 at home. That’s about 2/3 of a year inpatient, not including the multitude of doctor’s appointments since that first anatomy scan a little over a year ago, with many more to go. Here’s Max with his two surgeons, Dr. Burkhart and Dr. Nakamura. We cannot thank them enough, or the whole team for that matter (you know who you all are

). We will miss everyone terribly (but not being inpatient, that’s for sure)! We are praying for a long home stay, a cozy holiday season, much music making, sibling bonding, snuggles, and a healthy Fall/Winter. Thank you EVERYONE for all your prayers, donations, fiery emails to the car dealership, meals, messages, and love. There’s no way we would’ve survived without this outpouring of support. And eternal thanks to my incredibly hospitable cousins, Jack and Dee, for housing us for months on end. And thank you once again and especially to the Pediatric Cardiovascular Program at Oklahoma Children’s Hospital. Thank you for saving our son’s life. You all do incredible, invaluable work and we are so grateful.

FINALLY he is coming home after a very long time but doing so very well.

He is such a happy little man, even after all he has gone through this past 8 months.  He will officially be 9 months old in a week.  BUT he will be home to celebrate and to celebrate this dumpling's 4th birthday.  

So very much to be thankful for.  She is celebrating and so is Snicklefritz the day before hers.  The week before is her Auntie Biff's.  I try to  have a family gathering in September mainly for my mother-in-law's birthday but since she has left us I continue to do it.  We have so many birthdays in the month of September and the first two days of October, it just makes sense to keep the tradition up and honor her. Not even sure when I will be able to do it as they have their own little parties to plan.  We will squeeze in there somewhere.

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.

 

Weekend of Fun, Week of "Here We Go Again!"

 We scooted off to the cabin this weekend for more R&R and a bit of friend time.  Our little group was sparse but Lesa was there to do the chit-chat Saturday evening along with her hubby.  We were thrilled by the rain on the roof all weekend and even last night here at home.  

Art, oh how I love creating art.  The drawing group is going to have to be put on hold for at least a couple of weeks (hope it's not 3!)  Today begins my stretch of watching Min full time again.  Little Max is supposed to have his next surgery Friday as he has outgrown the shunt that was put in the previous surgery in January.  It is just time.  He's been in the hospital since I think June 8 when all HELL broke loose for his family.  Honestly, I've only seen her twice since then as their parents have been taking turns being back in town with her, which I must say was a welcome respite from it all.  It allowed me to finally get rested and well.  Last week was the turning point for me with the glands in my throat to finally settle down and recede in their swollenness! I'm so thankful for a full nights sleep without pain and not taking Tylenol forever.  I actually had someone say to me that maybe it was all in my head.  Don't mind telling you I was pissed by that statement as it was not in my head, the pain was quite real.  Oh well, onward to the task at hand today.  THANKFULLY little Min got her cast off last Friday but I'm not sure she is using the leg yet.  I don't blame her it is scary to start walking again after a cast has been taken off.  With me I had a walking cast so I was used to walking again, she is not.  It is still green in healing so she does still have to be careful.  Not sure I can carry her around all day long though, she's nearly 4 years old and my back is 67 years old!!!

Hopefully, HOPEFULLY I will be able to go to the studio and paint but not sure at this point.  With her around it's kind of iffy.  You know when Snicklefritz was young she would either paint at her easel or sit in a chair or windowsill and watch me endlessly.  She loved to watch me and still does.  Min is a different story.  She wants to touch and be in the middle of it all, different child for sure.  I'm hoping on Wednesday to get back to this little jewel I've been working on.  I'm taking my time trying to make it happen.  In fact, this is my second attempt at painting it.  It's bigger of course with her smelling roses and holding a Victorian lace parasol.  Definitely a challenge, a challenge I'm willing to try.  Hard to do with a 3 year old in the mix.  

Have to tell you I'm extremely apprehensive about the week and how long it will be having Min with us.  This week alone I have something every night so I've already canceled two of them, mainly because The Hubby won't be here to watch her either.  I'm hoping to make it to my book club because he dances that night and I've asked B to come but Snicklefritz's first day of school is Thursday and they have a ritual of the night before school starting.  Lesa said she could watch her and I may take her up on that at this point.  I'm only gone a couple of hours and frankly The Hubby could watch her an hour of that time.  I'll make it happen.  IF the doctors DON'T do the surgery on Friday and want to wait a bit longer then I'm going to have to insist that one parent come home to care for her.  The long term thing I can do just so long before I cry "UNCLE!"  It's just too much on me.  There comes a time when you realize you are too old for this kind of thing.  

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!

A Little Bit of Life

Good morning all.  The rains have certainly cooled off of those 100 degree July days.  They are saying the over 100 days are over for the summer, but seeing is believing.  The weekend we did skip off to the cabin again for some R&R.  It was nice to hear the rain on the metal roof Saturday/Sunday morning.  Our usual weekend group all got together on Friday evening for a Mexican dinner and chit-chat in the cool of a cabin.  It's been awhile since we had nearly everyone together, and everyone, I mean who's left.  In our little gathering group we've lost 3 in the past three years, two just this year.  It does not feel good and brings me to tears a lot.  The past couple of weeks we've had two funerals one of our cabin friends and one long time friend who lost her battle with breast cancer.  I guess as you get older this is bound to happen but really they were all too young.  It's a bit scary, especially since I've been battling this unknown throat monster and not sure what is actually going on with it.  If it's allergies then good, nothing more, but there's always the nagging thing in the back of my brain that says, "could be more!"  Honestly so tired of not having a voice most of the time and the pain in my glands causes me to lose sleep a lot.  

Painting has been not been the forefront of my mind but did get this little gem done a couple of weeks ago.  I'm working on some more things but I've had the older grand, Snicklefritz a lot with me the past couple of weeks with a couple more to go before she is back in school.  It's just been so hot I've not wanted to get out much and I've been avoiding the air, just in case it is allergies that are being triggered.  I did finally have lunch a long awaited lunch with my sweet brother on Friday and we plan on doing it sooner than later again.  It was nice to visit with him.  

Just not a lot on my mind yet there is a lot on my mind.  We have the impending surgery coming up with our baby Max and that is on everyone's mind.  He's doing well in the hospital where he will be till the surgery and after a bit.  Sure do want him home and life to get into a regular life routine for EVERYONE! Soon, very soon.