Blog post TAKE 2! I had almost finished this post and after one wrong push of a button it was GONE! So here we go again.....let's see if I can remember everything.
Well maybe the 3rd time is the charm....everything was lost again!! Oh boy....brain don't fail me now. I had to step away for a day before I went in to the ugly cry and started throwing the computer after losing all this for a second time.
Let me explain ~
I was going to end the post with this, but after the last few days I've been having I figured I'll get the shit show over with and end this post on a good note.
This summer we've been busy with sprucing up the house (inside and out) while aslo enjoying the summer seeing we haven't had much traveling to do. With that I have OVER DONE it and have now found myself in a VERY LARGE MS Flare up that is defeating me by wearing me down as I loose both of my leg function. Both of my legs are weak, heavy, numb and tingly, it's an awful feeling wondering if I'll get them back to "normal" because after the 4th day of IV steroids I unfortunately haven't seen ANY improvement as of yet.
Got to Love this IV placement that is to stay in for 5 days.
Thankfully at the moment my BP is stable as it tends to sky rocket when on these steroids, but I did get the wonderful headache that doesn't seem to want to go away. Today is HARD ~ emotionally and physically. I'm worn out, tired, exhausted, in pain, and frustrated!! You'd think with these BIG GUN steroids I'd be the frickin energizer bunny but NO I'm the complete opposite of that. It's not me and I DO NOT LIKE IT!! Well at least I have "the time" to continue to redo this blog again and again, sigh
OH Just wait ....
It gets even better!!
My Lil Man didn't want me to go it alone and he started in about the same time with the most intense, scary, alarming Neuros I HAVE EVER SEEN in his life. 4 full days n nights of storming and seizures despite all the massive amounts of rescue meds we've had to pump him with. Geez ~ wth is going on over here!?! I can blame the Wonderful Blood Full Moon and Lunar eclipse we just had as they tend to throw things out of wack, but NOT LIKE THIS.... EVER!!
Minutes, Hours, and now Days filled with Neuro storming and seizing!! Danny tends to get only 1-2 of these a week NOT over n over n over for days n nights ....well day one out of the blue with NO warning or triggers that we can find he had over 70+. We've exhausted ALL our rescue med resources and had to call in the doctors to get some advise and a different game plan. Between Danny's Neuro, Palliative care, myself, and the nurses here we've been playing around with a bunch of med cocktails in hopes we find that right fix. We are throwing straws here as again we have NO CLUE as to why this has started. After the 4th day I'm cautiously optimist that we may have found something that works...or its just the massive about of meds we've already pumped into him that are finally metabolizing and kicking in. So now we are on guard for serious blood pressure issues and have made his room (oh yea we are doing this all at home, too) into more of an ICU room with IV poles of fluids on stand by in the event he crashes on us. NO PRESSURE or reason TO BE ALARMED!!
He's eyes are bloodshot, tearing, and tired! Nothing more helpless then those baby blues looking back at me saying "HELP ME'! I'm trying buddy and I'm giving it ALL I GOT!
Thankfully we have an amazing nursing staff here on TEAM DANNY that I trust wholeheartedly which allows me to walk away for a few and decompress. To helplessly watch your child suffer despite EVERY effort I'm trying is not for the fainthearted and even this rock star mom needs a sanity break (I'm sure my relapse isn't helping either). Too bad I'm in this nasty relapse with BIG GUN meds or I might have had to go hide in the corner with many cocktails.
Its amazing what some make up and a smile can hide..... this my friends is a women on the brink of madness and going to end up in the loony bin ~ anyone else want to come join me?
Well lets get this party started on a better note!
Unbelievable that it's been over 3 months since my last post.... The award for worst blogger goes to ~
ME!
Thankfully I post on Facebook to give me a better outline of what's been going on. So sit back relax and let me tell you the stories of the last few months....We've got some catching up to do so grab a snack and something to drink, we might be here awhile. Looks like I'm going ALL THE WAY BACK to April 2018. It's so hard to talk about last school year when August 7th, in less then 2 weeks, the next year (OMG, Av's a Junior now) dive season starts up. See I'm already getting side tracked and ahead of myself so here we go.
We were blessed to attend Ms Sarah's wedding in April.....What a wonderful wedding and Ms Sarah was a beautiful bride!
We had to say Good Bye to Ms Sarah as she moved back closer to her hometown. We are very sad she wont be working with Danny anymore, but thankfully she didn't move too far away so when we go down to CHOW for appts maybe we'll be able to get together and catch up over some Cheesecake, lol. We were absolutely blessed and lucky to have such a wonderful and amazing person like Ms Sarah come into our lives, a relationship that will forever touch my heart. We wish he all the best in her new life and career, but extremely sad to see her go.
The opening in the schedule made it available for Av to come work with Danny more. So she's been training to work with him one on one when we have some openings on the schedule. She's stepped up to the plate and has DONE amazing ~ I'm so proud of her !! The bond these two have are even closer and it makes my heart so happy!
Reality is Av will be going back to school soon so we also were blessed to find another wonderful nurse to come work on Team Danny. I'm pleased to introduce Ms Angie! She's fitting in well and I can only see a great relationship building.
Yeap ~ a FORD Focus. Did you really think Dan was going to let her drive any other brand?!
The pups have been doing well! We just love having them around
Indy
You see the "Goat Dog" ?? Well Mr Sully thought he'd try to get out of the fenced in area by jumping down the rocks. All was good until that first jump down and he found himself stuck, lol. Dan had to go save him....bet he doesn't do that again
She runs the show, as you can see she has NO fear and thinks shes the Queen B around here.
Prom Poses!!
Isn't she beautiful? I was shocked that she chose a purple floral dress....I LOVE it! Which typically means she doesn't, lol
The day after Prom was Dive Regionals in Brown Deer WI. There's not too much to report there other then the competition didn't go well as Av did not advance onto the Sectional competition which was a pretty hard experience on her but she took it in stride and is ready to go at it hard when High School Season start back up on the 7th of August. With not advancing this summer we were able to hang out and have some "Down" time rather then trucking around the states to get to competition and camps all summer long. Av went for the 5th time to Iowa summer dive camp, and was signed up to go for her second time to Indiana Dive Camp in July. There was a lack of communication with the fellow diver that was doing the car pool there and unfortunately we had to cancel Indiana last minute as we were not able to get her there in time so another big plan for the summer didn't happen. BUT don't worry Av has been busy being a kid this summer which is also good for the soul and maybe hit alil reset in hitting the boards full force
Went with Jaden's Family to an "Escape Room" and they got out in time!
Ran in their first Bubble Run 5K
First time to Country USA
She Went to the Field of Scenes Drive-In Movie twice. Both time giving this momma anxiety as bad weather was to pass through each time they were there...nothing like feeling as if the kids are going to live a scene from the movie Twister!!
Learning Lacrosse
Pool fun with girl Friends
Horse Back Riding
And they are planning on doing a day at the Noah's Ark Wisconsin Dells. To be a kid again, oh the fun !!
Av and Coach were awarded the WISCA awards of Girls Diver of the year and Girls diving coach of the year. Oh the places they have gone....what a great team they make! Both are very deserving of the acknowledgement of their hard work
Also for the second year Av was honored to be on the All American Diving panel due to her diving performance and academic standing. We are SO PROUD of her!!
For Mother's Day this year I had a special surprise delivery.....Isn't he the sweetest!!
It's with a heavy heart that on May 30th Danny's Best Friend Griffin passed away. What a difficult good bye that was! Just like that reality slaps us in the face to show you how precious life is and how quickly things can change.
We will miss you dearly Griffin....Forever In My Heart ~ Always on my Mind. Love ya Buddy!!
A few week ago I got myself into trouble. We have a good amount of trespassers on our property despite the lights, addressed, names pillars we put up at the end of driveway. Mostly people will drive up the drive and realize it's not a road and turn around in the circle and leave. Some get alil more ballsy and drive beyond the house and down the hill to our backyard before the light bulb clicks they are in someones yard. Well on a Monday afternoon around 1 we had people ride their bicycles up the drive, down the hill, through my grass and started snooping around the storage garage in the backyard. After reviewing the security cameras I had screenshot one of the people and made a post on my FB page and on the subdivision that is located in front of our place on their FB page so they can be aware of some creepers that are around as I didn't recognize these people or I would have approached them or went to their place to question what they were doing. Well I agree I should have chosen some better words especially in today's crazy world but I was upset and sick of dealing with some crazy. I had said something on the lines of if they weren't looking to get lead in their ass they better stay off my property. Well that must of pissed off one of my "neighbors" in front and they called the cops on me stating I was threatening to shot the neighbor kids. UM ~ excuse me, WHAT?! I have never had an issue with the neighbor kids as they are all very kind and considerate..plus if I knew who they were again I would have talked directly with them.These people were NOT kids plus it was Monday at 1pm ....shouldn't they be in school. I was visited by the local PD and I have to say I was on edge wondering why he was here. I really didn't think my post was that offensive, but once I found out (before the PD visit) someone was offended I changed the words on the post for their sake, but proceeded to get back lash from that also. I was thinking the police officer was there to tell me something happened to Dan while at fire or rescue call. So I was pretty relieved to find out it was just a post on FB. Not the first time my mouth has gotten me in trouble and I'm sure it won't be my last.
The VERY next day I find this guy walking in the backyard along with woods on our lot line. WTH!! I wasn't going to be telling the "Neighbors" about this guy and get my ass in the sling again. Well Just last week there was an attempted break in at one of the houses in the subdivision. Someone tried to get in thru the garage and thankfully the neighbors had their big dog in the garage which must have scared them away. I tried to tell them!
Danny has now graduated into a bigger bed. Much more space for momma to snuggle in with him and this bed not only has the head/foot movement along with a massage feature but the whole bed moves up n down to adjust to each of the nurses heights in hopes to save on their backs. It was still hard to move his sleep safe bed out of his room as that was his MAKE A WISH he received back when we was a wee lad.
Want to make a enclosed car trailer look like a lego......attach it the back of a 44' RV ~ HAHA
Well that was taken care of real quick as the race cars have a new ride now. Once Dan gets the new trailer all decked out and ready for its voyage ride I'll take a pic to see what this beauty looks like towing behind the RV
Music to their ears ~ The T-bird runs! There is still a lot of work to do but some much needed pick me up and positives are coming along with on this labor of love.
There was a mishap with the winch and the Fairmont at the last race which resulted in damage to the race car. Thankfully no one was injured as the results could have been catastrophic. The winch toggel stuck in the forward motion that continued to pull the car right into the cupboards inside of the trailer. Crushing and pushing the bumper, left front panel, and cracking the hood. I'm just grateful Dan wasn't under the car or in front of it as the car can be fixed....pinning him between the car and trailer wouldn't have ended too well. This mishap put a damper on the following races but things are starting to come back together and the car should be flying down the track soon.
Dan also has been busy on Fire and rescue calls
Danny went to a car show that was held at Menasha High School here you'll find him by his dads car as he was there helping to promote The Twisted Pistons Cruise In which is a great car show where the proceeds go to local kids with some great scholarships. If you're not busy 8-16 stop on over to downtown Menasha and check out the vehicles, entertainment, and concessions.
We had a great time at the Flag Day Parade
Listening to his favorite band Boogie and the Yo-yoz
We're having a great time hanging out in the pool
We had an face lift in Av's room....new paint, carpet, and decor
We spent 2 full days pulling out dead and over grown trees n bushes around the yard
After working out in the hot weather and moving all the furniture around with in the house some much needed down time on the boat was in store!!
Love stopping at the bar on the water to find out our neighbors were signing there and the drinks were going down pretty well too
I'm so excited to be another GREAT AUNT again! Meet Ms Ella Ann
Av was honored to be asked to be her God Mother ~ LOVE LOVE
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