Av has had a nasty cough and congestion but no fever or aches, she's had this for about a week now and is improving daily. Good thing she is starting to feel better as the Winterfest Dance is this weekend.
Av asked Jaden to the dance ~
It was fun helping her with the sign ~
Av had a dive meet at Brown Deer last month and she placed 3rd in both the 1M and 3M event. She did very well with her first meet competing in the 16-18 age bracket.
Visibility 45 mins of a 1.25 hour trip was "Spectacular"
Poor Jaden toughed it out on the bench with me the whole day...He's her biggest fan!
Danny has been doing pretty well. I finally ordered his new bed and it should be here next week. So exciting!! I also got him a alternating air pressure mattress overlay to help with keeping the bed sores away, we've been pretty blessed to have minimal skin break down issues thus far and I'd like to keep it that way. Good thing about this overlay is it's small enough that it can come with us on the RV too.
Here he is sporting his new Maryland hat to antagonize his sister but show his support to Jaden. Let the games BEGIN!!
Danny has been having a few break through seizures/episodes the last few days. I really can't pin point as to why so I'm just going to blame the super moon and hope things resolve as quickly as they showed up.
We saw Danny's new GI doctor here in the valley and I really like him. He was very informative and he actually listened to my concerns. Once the vent change over is done and there are no hiccups or issues with that we are going to start changing some things around with Danny's diet. We FINALLY have Danny at a weight that is good for him and now we have to hang tight so he doesn't lose much more. We need to start to change things around food wise for him with his bone density and gut issues and he needs to be on a more adult version of formula, BUT this might not be an easy change. I believe there might be only 2 other formulas that he could tolerate (he is sensitive to dairy, soy, whey and has a fluid (42oz a day) and calorie (480 calories a day) restriction). There are many factors with this change so I hope and pray things won't get too off while attempting to improve things. I'm not sure if my want to bring back Real food into his diet will happen as we discussed how sensitive Danny is and when he was on real food that is when his C Diff was crazy out of control. I've been told that real food can do that to some as it's not as "clean" as Danny's gut is used too which could have been a good source as to why the cdiff wasn't going away. No real food blend has been introduced since we had the fecal transplant procedure done which took care of the c diff. That shit (pun intended) is nasty awful and I really don't want to have any chance of introducing that crap (look there's another pun, lol) back.
I am interviewing a Nurse Friday afternoon to come work with us. This summer we are temporarily losing a nurse to maternity leave in June and then the end of June we are sadly losing one of our nurses. She is moving and we are so sad that she is leaving us. Just when we have the nursing schedule completely covered and with an AMAZING team I blinked and it gets all thrown off. I have 3.5 months to get things covered.....lets see if I can make it happen. It's so unsettling to have a stranger come into our home, not only is hard enough to find a nurses that is willing to come work with us, BUT then you have to make sure they are certified, trustworthy, dependable, and capable. Because let me tell you there are some real doosies out there....believe me you can't make this shit up. Don't get me wrong there are some wonderful nurses that have come through our doors, but then there hasn't been so wonderful nurses. Just what we've dealt with in the 9 years we've had nursing ~
~ Caught a nurses sleeping on the job in the middle of the day as they were too tired from working the night shift at a hospital the night before.
~ Nurse was stealing valium and vent supplies (she was good as I couldn't prove it, but once she was let go the stuff never went missing)
~ I've had nurses come in the home with NO training or experience with traches or vents (agency nurses).....UM excuse me.....NO THANKS!
~ One nurse caused significant trauma to Danny ... not deliberately but more do to lack of common sense and Then proceeded to lie and cover up the incident. Just recently the abuse of our kiddos from the hands of nurses has come more to light with more n more families getting cameras.... I'm telling you if you don't have them GET them! It's mind blowing how many of these trusted nurses are hurting our babes that can't speak up or protect themselves.
~ The cattiness is crazy.....they don't work "together" other then the 5-10 min report off during shift change BUT some just cant handle it, you'd think I was dealing with some high schoolers.
~ The stories I have heard from other families or nurses about their other clients nurses and their shitty attitude, bad actions, and lack of dependability. Let's just say I would not stand for so many of what I've heard....I get it many are desperate for help and will take just about anything they can get.
I'm sorry I'm not risking the safety of my child and believe me I will call anyone out if I have too, as too many remain silent. I have a child on LIFE SUPPORT where many of the hospitals will not even take on the care (yes all the local hospitals will not take Danny in, if we have to go to an ER they almost always call down immediately to CHOW to have him transported to them) and many nurses will not come work with him because of the high demand he requires. Our nurses are not glorified babysitters they are his life line. At any moment things can go tragically bad and they had better be on their game and know what to do when the time comes! I hold high standards, have expectations, and requirements for our nurses and if that makes me a Bitch....SO BE IT! People wonder why I am so bat shit crazy/hard core on nurses and why I have cameras in the house, because unfortunately we live in a world that makes it be that way.
After me hearing about Ice fishing for the last 18.5 years....Dan has finally made it on the ice. I on the other had will be keeping myself on land. I don't do ICE!! Now lets see when/if we will have any fish, LOL.
A new and exciting business is in the pipeline for the Osero's. Things are being finalized and the construction plans will be in the works for our new venture in owning a Blimpie Sub shop. It will be located in the open spot of our retail building next door to our Oshkosh Laundry. Stay tuned!!
The new RV will be ready for us to pick up with the new dinette booth and couch installed by next week. Here is the video the dealership had made (it has the old table/bench and couch still). Enjoy!
I have had a significant amount of friends looking at new handicap accessible vans and they wanted to see what ours does. For those of you looking in the market.....Here is Ours. It's a 2017 Toyota Sienna XLE
I have been doing well and staying busy around the house. It's surprising that I haven't had any MS relapses with how flippin cold it has been around here as I tend to have more issues when it's cold. It's too cold out for this sissy to venture out if I don't have too, LOL. I have been working down in the basement redoing my storage area as more shelves were built so I'm rearranging and cleaning out. Now that most of that is completed it's going to be a room that will be closed off instead of being out in the open.
Lil Lacy has kept me busy not only to adjust to our home, routines, and the other pups....which she has done very well....BUT we found out a couple of week ago that she is really sick. She has what is called a shunted Liver which is essentially her liver isn't getting the proper blood flood so it isn't working correctly. It is affecting her digestion and her lil body is filling up with toxic ammonia levels which is why she was showing strange neurological issues (yelping, staring at walls, walking funny, and no energy). THANKFULLY changing her diet to a low protein food, the antibiotic, and Lactulose meds are helping. There is a surgery that can be preformed for a minimum of $5,000 and it's not a guarantee, plus it's my understanding that with her being a small dog it will make the procedure even more difficult. With the change in meds and diet for now I have my Lil spunky/sassy Lacy back. I am forever grateful that this change has improved her quality of life as she got SO SICK VERY FAST and I was afraid that after only having her for 2 months I was going to have to put her down.
Thanks for following our story and Until next time my friends!
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