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Written December 2018
Leif and Lena Baron Family
Christmas Update for 2018
Merry Christmas and Happy New Year to all of our Dear Friends and Family!! We hope that this letter finds you well and happy. Our family is doing well! We've officially lived in California for one year now. Three months in Bakersfield and nine months in Huntington Beach.
Leif is working in Compton at MLK Community Hospital as a permanent float pool RN and is no longer a travel nurse. He enjoys the hospital and his co-workers. And they Love him! As a float pool nurse he is assigned to departments all over the hospital including the ER and the ICU. His latest evaluation was filled with praise and gratitude from the administration. Can't beat that! He is also finishing up his final year of his Masters Degree as a Family Nurse Practitioner. It's amazing to think that there's a light at the end of that tunnel. Leif and I finally convinced ourselves, and the ward leadership, that we will truly be staying here. Leading them to give us each a calling in the ward. Leif is serving in the primary and I am in the primary presidency as second counselor. Leif is an amazing nurse. But he is an even better father and husband. He brings a life and light to our home that is hard to beat.
Lena, well, I'm doing well! I am happy. And I have all that I could ask for. I have a testimony of my Savior and His gospel. I have an amazing husband. I have seriously, Seriously, amazing children. Especially my sweet baby who is currently my constant companion. Which I know was absolutely meant to be for this time in my life. I live in a beautiful part of the country in a place close to the ocean, sunshine, and all of the conveniences of life that a mother could ask for. I am making good friends along the way. And keeping friends old and new from around the world. My cup runneth over, really. On the harder days I have plenty of good things to keep me from falling too deep, for too long into the dark. We have finally narrowed down the names and diagnosis' to my ailments. Which has been a lifelong journey up to this point. And we are only steps away from getting control of a lot of the struggles I face daily. I feel very very grateful and blessed!!
Jakob. Jakob. Honestly, Jakob is the linchpin of the family right now. His mood and influence determines much of how the rest of the house feels. Gratefully, he is most often cheerful, helpful, silly, and uplifting. Wherever Jakob is, there will be music. He revolves around listening to, exploring, and creating music. All different genres :) Jakob has full blown ADD. So this means that he is a constant multitasker. For example, right now he's listening to his current music, while playing or watching his favorite computer game of War Thunder (currently as a Fighter Pilot), all while juggling his baby brother. Really, that's a small scale example for him. Most of the time he's flipping through several different random YouTube things he's researching at the moment. All while playing and listening to music. He's pretty impressive. His parkour, writing, and acting skills are equally impressive. He is now a Teacher in the Priesthood and takes this very seriously. Jakob has a "presence" about him. He makes a big impact on whatever, whoever, and where ever he is. I love to watch him interact with the kids at church and school. He's so unique. Yet, they all admire him. It's pretty fascinating to watch. Jakob has his health challenges too. Which we're finally able to address. His rheumatologist is the chief rheumatologist of the children's hospital and is a great doctor. Jakob's up against some challenges with Juvenile Arthritis. But he'll tackle them like a champ. Of that I have no doubt.
Caleb, what would we do without Caleb!? Caleb "shakes things up a bit", every day. 😁 He is showing so much progress in school. He's in the 4th grade and we love to watch his writing and spelling improve as he puts his mind to it daily. Caleb has a kind and tender heart. He really wants everyone around him to be their best self. Caleb still Loves WWII and military history, especially anything about tanks and tank battles. Caleb still battles Autism and ADHD. But he has mastered many “life skills” by now that have moved him forward in many ways. We are so proud of him and love every ounce of him and all that he is.
JJ, or rather, “Jonathan”, as he has chosen to go by at school; is as wonderful and complex as his full given name of Jonathan Jefferson Lee Baron. 😲 He was baptized this summer and his tender spirit and desire to do good reflects the commitment to Christ he made. He is doing great in school. And has made a lot of friends. Which means that he's finally able to go a week or more without talking about how much he misses Alton (his favorite place to live). 😉 JJ Loves dinosaurs and hopes to be a paleontologist some day. JJ is a great brother. Especially with Joshua. He will read and play with him for hours. I also love to watch JJ and Caleb navigate their relationship. I often compare them to “two grumpy old men, sittin’ on a porch, tryin’ to outdo each other as they talk story.” 😂 They know that if I start calling them “Frank” and “Bob”, that it's time for them to simmer down and make some peace. 💓
Joshua. Our precious Little Caboose. I would be, and was, lost without him. I love all of my children! But each of them has had the season where they are “My Baby.” And this is his. Though, I have a feeling that his season might last just a little bit longer then the others did. ;) Joshua is what I call a “conflicted introvert”. Much like his Papa, he can be the life of the party and yet be one who would rather hang back within his own thoughts and observations. He has a presence about him, much like Jakob. People are drawn to his warmth. Though his quick smile and strawberry blonde curls help him in this regard, i’m sure. He will jibber jabber to people, himself, the windows, and to his toys, all day long. Telling all of his favorite stories.
He LOVES HIS BROTHERS and will mimic their every word and action. Truthfully, the only real word that he says without hesitation and with full understanding is “pray” .And he brings his two hands together in the sign of prayer. It shocked and tickled us when he surprised all of us one night at family prayer. Otherwise, there's a lot of testing of sounds and signs. But few true blue words. He says “mama”. But rarely with a purpose. Joshua is healthy for the most part. He's walking, eating, and doing all the cute things a 15 month old baby should. The only concern that still lingers from his rough and early birth is the possibility of some nerve or neurological damage with his right arm. It's very subtle. But he crawls on a fist and his arm gives out on him here and there. So we're meeting with a Pediatric Neurologist about that. He also has a problem with his right eye. It likes to wander outwards on occasion. So that will be fixed later. Once the muscles are grown more. So, all in all, for a baby who came out not breathing for a bit, we are So Very Grateful for the health and strength he is blessed with. And for the treasure that he has become within our family.
Thank you all for catching up with us! Please know that we Love you all and miss you and your company. Also, please remember that there are ALWAYS Good Things To Come in this life! We must not give up! Please endure to the end, In Christ. For, we know with all of our hearts that He will carry us through all things.
With Love,
The L&L Baron Family
Written January 2022
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Wednesday, January 19, 2022
Time For Battle Against Neuro Behcet's
September 1, 2021 I woke up feeling terrible. Body aches, throat ulcers, itching at my shingles scar, and I had hives. Most likely I had a fever as well. But I don't recall my temperature.
I remember being surprised and baffled by how quickly the flare came on. I hadn't been sick like this since July 10, 2020. So almost a year. During the July flare I had colitis and required IV Fluids and prednisone. The prednisone must have done the trick. Because I don't recall the flare lasting excessively long.
So, in September when I flared we had just moved into a new home and a new area. So my Rheumatologist and physician was in Southern CA and I was in the North. At that point, if I were in my right mind I should have called my Rheumi immediately and gotten prednisone. But I wasn't in my right mind. And Leif was only home half of the days of the week as he worked in San Francisco. And commuted home on his days off. With this flare I was instantly non functionally exhausted. Everything that was in progress was halted drastically. The fact that I returned the litter of puppies I was fostering shows the extent of my fatigue.
I must have finally taken some prednisone mid September because although I was still exhausted, I took on more puppies and even kittens. But that didn't last long. And then on October 25th I took on Stevie our foster puppy who requires diapers. Although he added work. He gave back and we fell in love with him. He was a good motivator to pull me out of bed. Along with my 4 year old who is still in diapers (only because I have ZERO ability to consistently potty train.)
So October continued with severe fatigue and mental fog and cognitive decline. And by then I'm pretty sure I was back to cussing (I know I am now). Which happens with Neuro flare ups. And on November 5th and 6th I facebook about Severe headaches. I remember that I'm pretty sure I threw up at that time too they were so bad and finally I took sumatriptan and packed my head with ice. The rest of the month is a blur. By then depression and cutting were definitely on board. The feeling that I was useless. So sick! I'm estimating that this is when I really started noticing CNS symptoms. Muscle twitches, warm spots (feels like a lighter up to your skin), and my knees and thighs started to tremble as I walked down the stairs. November and December I also battled terrible water retention in my arms and hands. Especially in the mornings. I finally took some prescription diuretic I had from the past. Looks like that's happening here in January too. Probably hormonal.
In December I started feeling abdominal tremors. Something I have never felt before. A sensation like the muscles and everything inside is vibrating. No pain. Just incredibly strange and annoying. The Christmas season lightened the depression. But the CNS symptoms and cognitive decline came front and center. Also muscle twitch/rolling in the tummy. I honestly wondered if I was miraculously pregnant. Of course I wasn't. Another symptom that was an issue in December was jaw jerking. It's happened in the past too.
In December I got really sick from an infection. Probably covid. Though the test said it was negative. During the two weeks I was sick I had Horrible nerve pain in my teeth and jaw. We concluded it wasn't congestion because it randomly affected different parts of my mouth. Including the lower jaw so bad I though I'd broke a tooth. The catch is, many of my teeth are fake and bridged. So it felt like phantom pains in my mouth. Extremely strange and painful.
So now it's mid January. And all of these symptoms and more are happening on practically a daily basis. So I am desperate and starting to get Leif nervous. He didn't like seeing my legs shake as I walked down the stairs. And he Really didn't like me talking about Multiple Sclerosis. So, for the last month or so Leif has been prepping for a new job. So we have held off on medical procedures because of that. As well as covid nonsense. But finally I had a clear enough brain to start researching the differences between Behcet's and MS. Because with all of the CNS symptoms we thought I might have MS and that the protocol for MS was different then just prednisone. But I found a study done comparing the two diseases and it is very very likely tht this is just an extension into neuro behcet's from the typical Behcet's that I've already been diagnosed with. And we found another study laying out the treatment plan for neuro behcets. And the first line of defense is always prednisone. So it WAY PAST TIME to start this battle. But here we are. Luckily I have a months worth of pills from my sweet boys who don't use them regularly. So 20mg a day until we see serious improvement and then taper. In the meantime get an MRI. and new doctors.
LET'S DO THIS!
Wednesday, January 12, 2022
#inthenext10years
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