I feel like I have so much to catch up on! Birthdays, running, doctors appts, and the girls have kept me so busy. Spring time is always the busiest time for us, even more so than summer!
Okay, to get one thing out of the way, Zoie had a hard, or I should say, we had a hard appointment at Childrens two weeks ago. her checkups with CF and Neuro were perfect! She is in the 14th, yes 14th percentile for weight! This is huge for us! Her lungs were clear, her meds and CBD oil are "working" as good as expected for now, and her GJ tube swap was easy breezy. All of this was kinda overshadowed at the end of our neuro appt when our awesome, yes an awesome doctor asked us if we had done anything to prepare for the future. I have a weird relationship with our neuro doc. I love her because she is amazing at helping us manage seizures, and she's on board with CBD. I hate her because it's so easy for her to say to us "how Zoie will probably pass" or "have we thought about what will happen if Zoie doesn't come out of a seizure?" I know it's her job, it's all of their job, to not get connected to the families, so they can be blunt, honest, not cry with you, but I didn't like it. Let's be honest, no one would. I haven't shared this with hardly anyone, it's the hardest thing we have ever had to think about. Because of this, I'm staying surface level here, no one needs to know word by word what was talked about, but I will say, nothing has changed with Zoie. She's rocking and rolling and smiling as always. But I suppose that since she's going to be 4 next week, the doctors always want us ready. Derik and I are slowly processing certain things. Trying to figure out how to prepare for what may be, but still live for today. It's hard, really hard. It's consumed my mind the last two weeks. But, slowly, I'm picking myself back up, and realizing we live and enjoy every single minute of every single day! For now we plan to talk to a pasture at church to get advice, but besides that, we personally don't feel ready or the need to do anything else right now. Maybe one day, but not now. With me sharing this "little" piece of this "huge" thing, I'm not asking for advice, or anything of that sort. Just keep praying for Zoie like you always do, because for now, nothing has changed with her <3 I want to say thank you for letting me start to share this. It's a start. Maybe one day I'll share more, but not yet. Okay, now other things that are happy!
I ran my first half marathon! Running kinda consumed me the last 8 weeks. I wasn't nervous come race day, but more snxious or excited to accomplish a dream for myself. I finished 866 out of 1400 ish. Not too shabby for my first! The first 8 or 9 miles were enjoyable and fun, the last few took some hard mental thought and push. I realized that my heart and lungs are in amazing shape, but my legs needed to be stronger. So, when I run my 2nd half marathon in October, I'll have more time to prep which will include more lifting. Here we go Rock n Roll half!
Ivie got dedicated on Mothers Day! It was perfect! We were a little nervous because Zoie had been having some small seizures the days before, but she was perfect on Sunday! She loved watching is take Ivie up on stage and was literally hooting from below! Ivie surprisingly didn't have stranger anxiety on stage, and had so much love and support there that day! It was perfect for our sweet girl!
Speaking of Ivie, a few fun things she is doing, walking with support (yay for a preemie babe), finally eating real food without gagging! Our girls have serious gag issues, it's something to cheer about ;), she learns so fast! She points to her boobies when you ask her where they are, she waves bye bye hi, says simple words, can sign and say more, puts herself to sleep in her crib for both naps a day, and makes Zoie chase her around by scooting all over the hardwood floor! Thanks Ivie for blessing us!
I have spent the last 2 weeks party prepping for Zoie's 4th birthday! I love parties. It's always such fun seeing how well everything turns out. It's a lot of work, and lots of prep, but these birthdays are so special! Can't wait to share about how her little party goes!
One last thing, Zoie got approved for what's called a CES waiver. It's been in the works for months! It offers services such as music therapy, massage therapy, I'm able to have respite help here at home, or if we need home modifications done, it's paid for. It's going to be a huge blessing, all of these things! Since she gets CES, she also automatically qualifies for Medicaid! Praise God! We don't have it quite yet, as a few small pieces are being fit together, but when we do, her formula and seizure meds will be covered again and we will finally be able to start PT/OT/Speech back up! Yahoo! We are praying all of this happens within the next two weeks.
Lots to share, I know. We hope everyone is having a great Spring and staying dry in this rain <3
I remember when you were born, 4 very short years ago. School wasn't even in your dad and I's minds. It's almost as if we forgot that when you have a child, part of them growing up is sending them off to school. You would think this would have crossed my mind being an Elementary Ed Grad, but we were so caught up in the now, and making sure we took our lives day by day, that no, school never came up. We decided to keep you home for your first year of preschool, due to your Cystic Fibrosis and learning delays. We wanted to strengthen your immune system an extra year, keep working on home therapies to help your brain development, speech, and muscle movement. You also had a very special friend at home to learn and grow with you; your baby sister Ivie. The last year you two have taught each other so much, she has pushed you, and you have pushed her. I'm so thankful we kept you home for that extra year! We have found a great preschool for you! It's called the Monroe Ear
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