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| Our latest family pics by the amazing Amy Walton :) |
So, after the last blog update McKinley's surgery was delayed once again due to a family emergency with her surgeon. Maybe that's why I stopped updating, I was tired of saying "this is our last ostomy bag!!" But low and behold, the surgery did finally happen on Sept 23rd. She was admitted on Sept 22nd, our 10 year wedding anniversary, even though we had childcare lined up so we could go on a 4 day anniversary trip but...who's complaining. :) Someone once told me you'd make many sacrifices for your children....they were right. But as I was complaining about missing out on our 10 year anniversary trip to a good friend of mine who has endured the worst tradgedy you can ever imagine said, "well, at least you won't have to deal with poop bags anymore, that's a great anniversary gift!" And that put it all into perspective. Not celebrating our 10 year wedding anniversary the way we wanted to was the least of our worries. Our baby girl was a day away from being put back together! :)
So the next day, the 23rd, she had the surgery. It was a 5 hour surgery and was a huge success. She woke up the next morning a little sore but all in all in good spirits. 5 days later she was home and pooping like a champ! Since then we have been dealing with some pretty horrible diaper rash. Bless people's hearts when they ask me if I have tried A&D or Desatin....this is diaper rash unlike anything you have ever seen. Which the Dr's have been warning us about for quite some time. It's actually more of a chemical burn with bleeding and a ton of pain. We have all kinds of speciality/prescription diaper creams and the "rash/burn" goes from good to bad to worse to ok again. Over time it will eventually go away, but for now this is the side effect of the surgery. But aside from some painful diaper changes, McKinley acts like she's been pooping her whole life. :) She is a happy, healthy, thriving 1 year old and she brings us so much joy!! We do have the occasional set back with her that reminds us that she's not 100% healthy every once in a while. Last weekend we had to call 911 (I've never done that before in my life!) and escort paramedics into our home because McKinley had a febrile seizure at 4 in the morning. After doing a little more research I've learned that they are usually fairly harmless however in the moment it was extremely scary. It turns out she had another UTI (at least her 5th this year, I've lost count) which can cause a fever, and a rapid rise or loss in body temp is what can cause a febrile seizure. Unfortunatly McKinley is now in a high risk group for having more febrile seizures so we're seeing her surgeon next week to see how we can hopefully prevent future UTI's and in turn prevent future seizures. Thankfully we had a good friend Matt Abers show up to our house that morning, he was the paramedic/firefighter on call. I have never been so glad to see a friends face in my lifetime!! If you ever have an emergency, make sure Matt comes to your rescue. He's a godsend. :)
McKinley is continuing to see a few different Physical and Occupational Therapists for her crawling/walking. She's recently started crawling and although it has more of an appearance of a frog crawl than a human crawl, she's still getting around which is exciting. :) The therapists would like to see her crawl a little more "normal" but we're proud of her nonetheless. She still doesn't like to bear weight on her feet/legs but she is making baby steps with that and doing it sometimes as opposed to never. And what's really exciting is that she's started to drink a little out of a sippy cup! It's not really measureable but for a girl that we were beginning to think would never drink ,this is very exciting!
On Friday McKinley went to see the orthopedic surgeon and continued to show us how miraculous she is. The nurse that led us into the room said "I understand we're here to check up on McKinley's scoliosis?" When the surgeon came in he reviewed her x-rays from that day and said "well, it appears that McKinley does not have scoliosis like we had originally thought, and her hips look really good considering the PT's concern for her low muscle tone". This was all amazing news and of course not surprising. What else would we expect from our miracle McKinley?!?
And never to be forgotten there is Mr Brooks. We call him Bubba which he loves. It's one of his favorite words. Along with Papa, Nana, Mama, Dada, Kitty, Dog, Bye Bye, No, and Dooooo it! :) He's quite verbal for a 1 year old! He's almost walking on his own, getting braver each day with going from couch to couch. He could do it if he only realized he could. He just started crawling and has recently learned to go up and down the one step in our rambler. He's gone from my high maintenance cry baby to a total sweetheart Mama's boy. He is so funny and makes us smile every day.
I always knew God had something special in store for us but I never imagined the story our life would become. Two miracle babies that continue to amaze us each day. Thank you for praying for us! We cherish each and every prayer and will continue to as these miracle babies continue to grow and thrive!! :)
