Hello All!
It apparently has been 2 years and 4 days since I last posted. Needless to say, after my last post, life got a little bit hectic (understatement of the century 😆). Since Feb 2019 the following has happened:
March 2019: Found out we were pregnant with our 2nd child and were very nervous/excited!
March-April 2019: Hubby, daughter, and I visited Japan for 2 weeks for our 5 year anniversary. It was absolutely amazing and we definitely will be returning probably for our 10th anniversary, if not before. We spent time in Tokyo, Hakone, Mt. Fuji, Kyoto, Osaka, Kobe, and Hiroshima. We visited countless shrines/pagodas, stayed in a traditional Japanese inn, rode on a pirate ship, went to Tokyo Disney Sea, ate at the Pokemon Cafe, experienced TeamLab Borderless, saw a huge moving Gundam, saw many cherry blossoms, attended many Sakura Festivals, rode the bullet train, ate so much amazing food, and paid our respects in Hiroshima. It truly was the most amazing trip we've ever done and we loved the country so much that we even said we could see ourselves moving there after the kids were grown and can decide what they would like to do.
October 2019: Good - Excitedly welcomed our handsome baby boy on the 17th. Bad - Lost our extremely loyal German Shepard of 10 years very suddenly to bloat on the 21st.
December 2019: Lost our loving Yorkie of 12 years due to a broken heart from losing his best friend. This was extremely hard for me because he was my first fur-baby who came into my life when he was just 7 weeks old and provided me comfort during a very difficult time.
January 2020: Almost lost one our cats due to a urinary blockage and had to spend several days shuffling him back and forth between his normal vet and the emergency vet for around the clock care. Doing this with a 3 month old and a 4 year old was exhausting.
Starting in March 2020: Our daughter ended up in the hospital for 96 days, mostly in the ICU for a condition called Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis Overlap. This is a rare condition in children, usually caused by antibiotics and rarely by a virus where the immune system fights off something but then doesn't get the signal to stop and attacks the skin cells and all mucosal sites inside the body. She fell into the viral category, but they never could figure out which virus after she came back negative for every signal viral/bacterial/toxic test available. People with this are treated like burn patients because their top layer of skin is completely killed off. Usually a cytotoxin is used to block a portion of the immune system enough to stop the progression and allow the body to heal. Unfortunately for us, our daughter's was not stopped with just the cytotoxin but we also had to approve the use of a TNF Inhibitor to shut down yet another portion of her immune system, which we were told there was no record of both treatments being done on one patient and that they did not know what the effects would be or that if it would work. Thankfully it did. In the end, our daughter's body was 80% affected before they could stop the progression and she lost all her beautiful hair and her finger nails fell off. Another terrifying thing that happened during this was that one day her sedation was not really working and she was constantly rubbing her back raw against the bed, mainly in protest of everything as far as I could tell. When the burn nurse went to change her bandages that day, it released all the pressure and our daughter started to bleed out because her blood was no longer able to coagulate because of all the rubbing she had done over such a large body surface. In the middle of a Covid pandemic, they only allowed 1 of us to stay with her at a time but they called both of us in to the unit because they all seriously thought they were losing her. It took 2 hours, 6 bags of blood, 2 bags of plasma, and 3 bags of other various blood products for them to get her semi-stable. The week following that episode, she finally started showing signs of improvement and proved the doctors wrong every time when it came to her recovery. We had to authorize the placement of a trach to help with maintaining her airway while she was sedated and were told that she would have it for most likely at least 6 months - it came out 3 weeks before we went home. We were told that she would have to have a feeding tube for several months to assist with her nutrition - that came out a week before we went home. We were also told that she would need to have a wheelchair and walker for her to use once we were home because she would be too weak - we went home without either and she walked out of that hospital because she was determined to relearn how to walk so she could teach her baby brother how to crawl and walk. They said she would need to do outpatient physical therapy starting the week after being released from the hospital until the end of October - she "graduated" on September 2nd. They said she would probably have lifelong damage to her lungs - we just received word a week ago that any damage that was caused by the SJS has healed and her most recent CT scan showed completely normal results. Our daughter is back to looking like herself, albeit with short hair and no eyebrows/eyelashes for now, running around and screaming with her little brother, and enjoying life like any kid should. For all her strength, courage, determination, and perseverance, she is my superhero.
October 2020: We took a little time in the beginning of the month to go visit with my husband's father and grandparents in Indiana and to see my dad and his husband in Michigan. We felt our daughter's immune system was finally strong enough to brave traveling and that it was a much needed trip for everyone. Then our daughter picked a space theme birthday party to celebrate our son's 1 trip around the sun!
December 2020: Filled with all sorts of holiday fun with social distancing in mind and our kids were spoiled waaaaaay too much by everyone on Christmas but it was nice to see them enjoying themselves and just being kids.
January 2021: Our daughter turned 5 and we got to celebrate a birthday that very nearly didn't happen. We spoiled her with a Little Mermaid birthday party at home with our immediate family the Sunday before her birthday and then with a 2 night stay at a Disney resort. She has been desperate to go back to Disney so we surprised her with reservations at Epcot the day before her birthday and Magic Kingdom and lunch in Cinderella's Castle on her birthday! She's still talking about how beautiful Cinderella looked!
Obviously our daughter's health scare has thoroughly changed our outlook on life. We know how precious time is because we came extremely close to losing one of the most important things in our lives. We take nothing for granted anymore and we cherish every moment, big and little. We now have a 1 and 5 year old running amuck in our house and we couldn't ask for anything better!
It's because of our 2 little ones that my hubby and I have decided to make sure that we get back to a healthier state both mentally and physically after a year of neglecting ourselves. For me, physically this includes small habit changes such as walking/moving more, being more aware of what I choose to eat and eating a piece of fruit instead of that bag of chips, and cutting out soda and sticking to water or tea. Mentally, it's making sure that I take time to do the things I love (arts and crafts, video games, reading, etc.) and allowing myself to have a little me time once a week to decompress. Hence the unintended, very long blog post. I am hoping to use this as an outlet whenever possible that includes not just my long neglected cross stitch but other things that I am nerdy about as well.
If you've read this far, then thank you and I wish you health, happiness, and a great and safe 2021 from my family to yours!
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| Our first ride at Disney in almost a year: The Seas with Nemo and Friends! |
