Update on Molly and Charley

Molly has been having seizure episodes lately, we go back to the neurologist in Feb but in the meantime we keep adjusting meds to help her find the right dose. In the past 2 months she has gained over 10lb which is a HUGE deal for Molly, however the struggle is to keep enough meds in her system w/ her weight gain! She was way under weight and the old med was responsible for that. She was on an adult dose of TOPOMAX which the Doctor coined as "dopomax." Molly is suffering from seizures as a direct result of her time spent on ECMO. They say now ECMO patients are treated for seizures while on ECMO and for years afterwards...………. medicine evolves so much in just 8 years. ECMO can cause brain bleeds in babies and is hard on their little body, her brain has some "injury" spots and that is where her seizures are stemming from. There has been talk of removing them but its in the very early stages. This is where Charley comes in. Just Friday Molly was up in the middle of the night talking out of her head, if she wouldn't have been laughing hysterically I wouldn't have heard her to wake up. She then started pacing and finally threw up very violently for apx 30 minutes...……...so what does this have to do with Charley? She struggled to breathe, it was terrible to see. She has asthma and tends to want to breathe in her vomit prior to her body being done retching……..this is the case when she is seizing and she can be in her room unbeknownst to anyone and struggling....this is how Charley girl will help! She will alert us that Molly is in trouble and we will be right with her. She is also being trained to help Molly with anxiety. She has been struggling for the last few months with debilitating anxiety. She can't handle when I leave the house, she completely breaks down and can't breathe. Yes, she goes everywhere with me or knows the exact time she will see me...…...Charley will help bring her some peace during times of high anxiety. She is very fearful she won't have one of us (Myself, Moran, Mitch or Macy) around when she has a seizure, she's getting to the age where she understands the gravity of the situation. We do not tend to sleep well at home (We .. meaning Moran and I) and we are on high alert most days trying to decide if an episode is that she ate something wrong, the flu, an anxiety attack, a seizure, etc! Parenting is hard, its hard for everyone... I don't know if we are doing it right, I feel like we fail daily and I feel like someone forgot to hand us the manual on how to deal with all of this. Charley needs to come home and if you are reading this blog please please share our GFM page to get the cause out there. I wish I didn't have to ask for you to share our campaign but I wish MORE that this was not Molly's journey. Thank you Thank you to all who have shared our campaign and thank you to those who have given out of the kindness of their heart, it means the world! https://www.gofundme.com/a9cw5-bring-charley-home&rcid=r01-15426574767-59ebef4243eb4d57&pc=ot_co_campmgmt_w

Chunky-wet nail polish

So............it's been a while since I have written and my soul needs it today. I have been on a pity-pot for the last few days and wish to shake it but haven't been able to. It subsides at times, like during Christmas Mass when Molly read her part of the Nativity story in Church, or when we all sat around the breakfast table Christmas morning, or when I went back to work today and felt like I was really in my element...........other then that..........it has been a heavy hearted last few days. Last Thursday we received the news that our insurance denied Molly a medication that her neurologist thought would be a great try. We went the week prior to Children's hospital in St Louis for a 2nd opinion and we fell in love with the Doctor and she diagnosed Molly with partial seizure epilepsy with focal or maybe even multi focal seizures. She is actually seizing more at night then we are catching and her slow days are probably after several small seizures at night. Now, after I explain this to some they tend to stare and say, "Well, at least she could grow out of it, or IT COULD BE WORSE!" Yeah, those are both correct answers but to a mom that lives in the moment these days neither of these help. In the mean time she is struggling at school, she is an emotional wreck, she tires way too easily, she frustrates quickly and she doesn't eat. She is currently overwhelmed with her best friend Charley. She is CONSTANTLY overwhelmed and aren't we all when we just don't feel good. Epilepsy isn't just a seizure here and there, its the aftermath, its the soreness and aches of a seizing body ................ on top of growing pains in a small stature 7 year old! She has very poor memory and some days are worse then others and I constantly ask myself will she be able to make friends...........she is a tad bit over-emotional these days and who wants that added drama? She is beautiful and she is mine! I am reduced to tears regularly at all the LIFE that we have to modify. I feel like its not fair at times and sometimes I resent the families that have lived a pretty vanilla life! Ours is messy, its superman ice cream with a splash of cherries, and chocolate mint and cookies and cream and all that crammed into a small little fragile sugar cone...........tasty.............intriguing................ but real messy! I feel like I lose sight of God and all of his blessings, I feel like I fail Jesus when I constantly ask why. This makes me feel guilty and this makes me feel like I'm a toddler throwing a fit but this is where I am! He will love me unconditionally, RIGHT!? I want to take all of the uncertainty out of life right now. I barely sleep at night listening for Molly, I snap at the big kids more then I should and I sometimes leave Moran to fend for himself............it's kind of a survival mode. To the moms at basketball games, sometimes I want to talk, sometimes I want to cry! To the lady at HUCK'S in Charleston, I'm sorry you had to see me sob.......... I really needed a fountain Coke after hearing insurance tell me they denied the medication, you were sooo sweet.....to the best friend at work.......for the Love of God stop taking days off work............to the 13 year old boy that loves to hug his momma......you will never ever know what those hugs do and to the 10 year old daughter that runs this house better then her momma, YOU ROCK! To the neighbor that told me today that I rock as a momma even after I smashed the hell out of my 2 year olds fingers at the grocery store...........I NEEDED that! To the family and friends that don't understand the journey, I don't either really, we are navigating for the first time too.........HUG my Molly anytime you can, give me a kind glance from a distance because if you hug me you will probably walk away with a wet shoulder and show my big kids some love, they are better kids because of this journey but they would have been good kids without it I'm hopeful! So that brings me to the title, Mace and Molls knew momma was down today.......so they gave me a spa makeover and as I sit here and type I have WET globby nail polish on my fingers...and I hate it but I will be leaving it for a while as it reminds me the little things are what make them and me feel all better, even if its for a little while! To all the momma's out there trying to keep it together, get out the nail polish and let it fly...............I cringed when they were doing it but now I don't want to take it off.

Fast-forward >>

These last several weeks have felt like someone put the mom of this house on Fast Forward! Skip to the good parts, pass over the mindless commercials and get to the meat and potatoes of the evening, THE SHOW!! Well, we have several shows running in the Moran House currently, let me give you the TV guide version! (My dad loved the TV Guide and I hated it because it was always LOST). The Moran Auto Repair Show is CRAZY busy and it seems like a running of re-runs! The same vehicles show back up in the yard to have "OUR MAIN CHARACTER"(Moran) work on them. He doesn't mind one bit, some of his favorite customers cars he can tell you make/year/mileage and exactly what is wrong by just talking on the phone. His PASSION is working on cars.......he doesn't say NO very often and the yard is proof of that! The other show that has really kicked into MASSIVE episodes is Mitch and his summer track! He loves being a VIPER and being part of an amazing team. He loves the cast of athletes he has become best friends with and he loves the meets! He is hoping for some good results this weekend but is nursing a pretty nasty heel bruise.........so send some good vibes his way. Macy..........she is more of my "director in training!" She stays back with her sisters when I run Mitch to track and she puts supper on, whatever I have managed to prepare and stick in the fridge for the week. Today she is volunteering at Catholic Charities and she works beside her Grandma Kortte, probably her BEST FRIEND!! Marly is almost 2............... so really, she is the STAR of the show! LOL! IF she's hungry there are 5 humans willing to help her, if she's thirsty......same! She never wants for anything and is the closest one in the family to know what it is like to have servants! (she has life by the tail)! Molls is running an episode of Animal Kingdom, Fear Factor, Little House on the Prairie and Ridiculousness ALL AT ONCE! OH, you laugh but picture this...........Rudy in her arms, while practicing dribbling for basketball, while babysitting a praying mantis and a young Robin on the front porch.....................all while in just her unders! Yep, that's my Molly! She wears me out, she is constantly on the GO and will NOT take NO for an answer for anything! She loves to be outside and surrounded by every living creature she can get her hands on! MY part in these shows........ I feel like security at the front door. Don't come in and disrupt the madness, pay your money at the door to view it and please.............don't feed the animals! In all seriousness Molly is in the middle of a medication addition and it has thrown her little body into "grouch" mood so if she wants to hold Rudy (the guinea pig) in her undies we are inclined to let that go! I know, a kid that runs the house...............well its better then the alternative at this point. I enjoyed seeing a lot of friends at Neoga Days and my kids like running around with their friends so to those that put it on, Thank you from the Moran's! I had several people ask me when my next blog was coming..............so although not a lot of news, perhaps a little light heartedness to get you through this TUESDAY!

Old Maide

Today and the days preceding I found myself feeling/looking similar to that retched picture of the grey-haired old lady in the deck of vixens in the game of Old Maide! I remember the heartbreak of drawing that card when we played as kids! That card became so wrinkled and destroyed because it never failed when one of use kids drew that card we would throw it or crumple it in a fist of rage (I know, slightly over-dramatic but if you played the game you can relate!) Well I feel like my life has had a lot more of these moments lately! I want to stomp my feet, say it isn't fair and throw something across the room! We have had a really bad couple of weeks when it comes to finances and Molly, no particular order. It seems like things in the house break or quit working all at once and this go round it was the big hitters, the geothermal, the washer and other things! To top all of that off Molly had a seizure Sunday night in her sleep. Her StL doctor has prescribed a new medicine that she is to take twice a day for three days.................and she has...................and this is where I want to throw things across the room! This am she got up early to pick berries, however, her body would not move like we are used to! She was in SLO-MO! She was emotional! She was a mess...............and I was late for work! Mace, in true Mace fashion, grabbed her some clean clothes, found her shoes and helped scurry her along and me, in true mom fashion, YELLED hurry up! She melted. She was now a slo-mo puddle of tears and couldn't understand why! Then it hit me, NEW MED, DUH MOM! I really stink at this mom thing sometimes! Today I feel worse then the Old Maide. I was late for work, they were late to the patch, she cried on plenty of berries I'm sure and I cried all the way to work as it hit me ............... she has a lot of adjusting but maybe the biggest adjustment is for ME! I cried and I prayed! I wonder sometimes why Old Maide has been popping up in our deck of life so much recently. I am reminded a lot of the blessings that we have! My husband is a rock, Mitch is steady, Macy is genuine, Molly is PURE and Marly............well she likes to scream a lot right now but in totality we have a lot to be thankful for; but man.............someone else can take their turn w/ that crappy card! In the game of life we are dealt a hand of cards and I know its how we play them but right now I want to throw the cards across the room, pull Molly in tight, the blankets over our heads and say I'm sorry. Keep Molly in your prayers and if you want the wrinkled card or have any idea how to get rid of it for good...................COME AND GET IT!

Warrior status!!!

Today I was reminded what exactly warrior status meant! My mom and I took Molly to her psych/neuro appt at Cardinal Glennon Knights of Columbus building. This appointment started at 9am so of course we were out the door EARLY! Molly never complained once. She bid her older siblings farewell as they were left alone to get themselves fed, ready, and on the bus all on their own! She kissed Dad and Marly on the cheek as they left before us to go to work and grandma Jane's to play....... respectively. We arrive at the facility and the day begins. She is asked to go back by herself with a strange new Doctor for TWO HOURS. We broke for lunch then 2 more hours. My legs were so sore from the day prior at CROSSFIT that I complained most of the day as I SAT and anxiously awaited to see Mollys smiling face emerge from that lock pad door! Mitch texted on the way home his plans to practice after practice and asks if I can join! I did, and I cheered and I yelled and I timed and I high-fived! I was shoulder to shoulder with Warriors all day today! It blows my mind that Molly never hesitates to go with Doctor's. She is the BRAVEST WARRIOR I know! Mitch and his teammates are preparing for Sectionals and wanted extra work ........he is the most determined WARRIOR I know and he is surrounded by THE VERY BEST FRIENDS/WARRIOIRS a mom could ever ever ask for! We have our warrior faces on and ready to greet the challenge! Wether it be test results or the finish line...... we got this!!!

LENDING LIBRARY!!

So, as I lay my head down at night this title runs through my head like a marquee. LENDING LIBRARY, LENDING LIBRARY, LENDING LIBRARY! I know it sounds odd, but let me explain. When we were sent home after Molly was born I felt it was on a rental sort of basis. I remember, as a kid, getting to go to the Library and if our library didn't have a book we could get 1 from the LENDING LIBRARY. That book (for me it was the ENTIRE little house on the prairie series) would come from a different library and I would take so much pride in that book and even try to get it back early and in better condition then I got it. I was proud to have it and I treated it as such. This is how I felt when I got to keep Molly! Perhaps those Doctors at Cardinal Glennon cheated death when they saved her life and now she was on a "loan" from God. I embraced that, I was proud, I vowed to teach her all about God and his wondrous deeds and when she would be called back she would have been better then when I got her, that was my mindset...............Then Sunday happened. She experienced a 45 minute seizure at my mom's. Moran was quick to get to mom's from work in Effingham and drove her to the hospital as she was unresponsive. When I got that call from mom the words LENDING LIBRARY came to mind for the 1st time! I have always felt she was on a loan basis but these words rang out. Was her book getting stamped, was this the date she was getting called back? I know, sounds odd but this is how I felt! ESPECIALLY in the ambulance on the way to St Louis! So here we are, at home, safe and sound and just waiting to see if she has another seizure. Many have called and asked about her so I thought I would turn to this blog. She is not herself. She has puked several times since being home, even last night! She doesn't have the flu but nothing stays down. FAST FORWARD 1 year!!!!! I composed the 1st part of this blog right at a year ago and never posted it. Time got away from me! Here we are a whole year later and six seizures deep into an unknown world! Molly "appears" normal but her brain struggles and she struggles to comprehend things that were once second nature! My Mitch has a super short fuse with her because sometimes her behavior is so odd or her memory is so absent he is sure she is "faking it!" It takes one look into her blank stare to realize there is no FAKING this! We are vigilant in making sure she takes her meds mornings and nights and that she gets all the sleep her little brain needs. Regardless, the safe measures aren't enough at times and she still has a seizure. Her seizures happen in her sleep or in the twilights stage! Not fully asleep at night or not fully awake in the morning! Mitch wants to get her a seizure dog because it really is scary to witness but they cost a lot of money!! If anyone is independently wealthy and wants a good cause I guess they could pay for Molly a seizure dog! We are on medication number 2 and make a wish won't grant a wish until she fails 3 meds! I hope she doesn't get a wish, med changes are very hard on her! To whomever turned her in for a wish, THANK YOU! We pray a lot! We pray that she will somehow grow out of this, we pray for all the babies in the NICU and we pray that she will always be in her own bed if she does have a seizure! My big kids are real protective of her and she HATES that! She doesn't ever ever want anyone to mess over her...... she wants to be her own person! Spend a day with Miss Molly and you will know why she is the most popular book in the LENDING LIBRARY!

NerVeS!

Mom's nerves are shot. I say this as sweet as I can and with as much patience as I can but it's where I'm at. There are a whole hosts of reasons......but mostly perspective (or a gross lack thereof). Puke in the middle of the night makes us appreciate the non puke riddled night, rain makes us appreciate sunshine, bills even cause a sense of accomplishment when we get them paid........so quit whining!I want to shout this from my rooftop. Someone right now is experiencing loss or overwhelming grief, perhaps the weight of sadness or depression and we are really gonna complain about the lines at Walmart, the traffic, the price of milk.....get it together people. Guzzle down a big dose of acceptance and realize everyone you meet has a current battle! Love others and treat others with great kindness! With that said my Molly is staring down her nose at another hospital visit and surgery. She will be getting her upper airways Un blocked and her ears back to "hearing!" This occurs 12.27 so a few extra prayers to help ease her through a nasty recovery would be great! I wish this wasn't going to happen to Molly but Faith will get this nervous nelly momma through this!