I totally skipped our August recap here on the blog just due to everything we’ve had going on lately. We’ve been incredibly busy (what’s new, right?) but we’ve also been exploring more of what’s going on with our Colly Girl. I think the last time I mentioned we were trying to get a referral to PT but our pediatrician wanted to wait and he had told us over and over again (I even looked back to June/July and I wrote he said that she didn’t have low tone!) that she was super strong and not to be overly concerned about why she wasn’t standing or walking. She was crawling great, but her other milestones seemed to plateau as well and we were growing with more worry.
A sweet follower/former customer of mine reached out to me after I had posted one of her pediatric updates and where we were with things. She had mentioned to me that I could Google “early intervention” in my state (which I had not heard anything about prior to) and that some services were likely available to her due to her delays. I jumped right on that and had someone from the state reach out to me that afternoon and say a local therapy facility would be in touch. From there, I chatted with a coordinator and we scheduled a few more calls/Zooms before having her in person evaluation.
About two weeks from our last call, a speech therapist and physical therapist came to our home to evaluate her. I had so many nerves but they were so knowledgeable and kind. They told me that Colly did in fact have a very weak core and extreme low tone. I started to panic and the worst thoughts flooded my mind. They reassured me we had the right people in our corner now, and we would work to get her caught up and search for more answers. Colly’s physical therapist recommended a new pediatrician and a neurologist to us too, both of whom she has worked with professionally for decades and are both very in tune to special needs and muscle disorders. I made an appt with him the next week and he also confirmed her low tone. We did a blood test there to potentially speed up our neuro appt, but we got the good news that Colly did not have any of the proteins/markers for ANY of the dystrophies (muscular dystrophy being one that I am familiar with) and no issues with her thyroid. Praise.
We continued with our therapies all of September and finally had her neurology appointment at PCH on 9/30. C went with me and we were both very anxious, but happy the day had finally come. The neuro was extremely intuitive and honest with us. He said he couldn’t just look at her and know what she’s facing (which is a good thing, because sometimes he is able to look at kids and know based on physical and presenting symptoms) but he agreed something is going on. We did a swab for a genetic test that tests over 400 genes and gene mutations, which is my biggest fear right now. I know that Colly checks a lot of the boxes for a couple of these conditions/rare diseases, but I’m trying to have hope. She has made a ton of progress in just a few short appointments with her PT/OT/Speech therapies (it is a team based model, so we have 1 physical therapist we work with directly who incorporates things from all of those areas and if she needs more help, she will go to the speech/OT for more). She has started babbling again, clearly saying MA MA! more often and ‘bub’/’bubba’ (what we call the boys, her brothers). With prayer and our faith, we really do have a lot of reasons to believe Colly will be healed and will make even more progress. Of course, that fear is still there, and C and I are both very much realists, so we know it could possibly end up not how we are hoping. We are bracing ourselves of course, but we know we will do whatever we can for our sweet little girl. She is a miracle after all, so I know miracles happen. She’s working so hard, and now learning more about low tone, I know this is part of the reason for her frequent fatigue. She is still irritable a lot, which for the longest time I thought was due to teething (I even took her to the ped earlier this year to ask him – does she have strep/an ear infection/ANYTHING – that’s causing her to cry like this?! and he said, nope, she’s good, just teething!) I’m sure teething still probably has a little to do with it still, but understanding more now about what she’s been going through it makes a lot more sense why she’s so cranky. Poor thing.
If you are the praying type, I’d love it if you could keep her and us in your prayers. I will definitely share more as we know more, and I hope that my story can inspire some to explore early intervention, seek more answers, advocate for their kids, and also get that second opinion if you feel you aren’t being listened to. We are incredibly grateful for Colly’s new team and know they have our best interest in mind, and I won’t stop at anything to keep pushing for her too.
Back to School
Since I skipped over our August recap, the kids started school! Our 3 bigs are now in 4th, 2nd, and Kindergarten!!!! All I can say is howwwwwww is this possible?!!? I feel like Conner was just entering kinder and Hun was a baby, yet here we are. They are all loving their teachers this year which makes all the difference and we feel very thankful to have these educators involved in their lives. Hun is also LOVING kinder (who’s shocked? lol) but it’s definitely been an adjustment for her going all day, 5 days a week. So proud of her though, and her teacher and I just had her first (ever!) parent teacher conference where she told me how much she loves having Honey in class, what a great helper she is, and how she’s doing awesome in Math. Another huge praise!!
JJ and The Boys
The boys (and C!) have been training 3-5 nights a week lately at jiu jitsu. They love the challenge and are learning tons – they actually just had their first competition which I will save for October’s recap but they did AMAZING and we are so proud. They love their jj family/gym and it’s awesome and so rewarding to see them thriving in this.
Fam Life + Updates
I celebrated my 35th bday this past month, and we had a relaxing night with our family + Gammy at somewhere we enjoy going to for dinner, followed by froyo. I got to see my BFF that night and it was honestly such a nice, thoughtful, quiet day that I am very appreciative for especially in this busy/stressful time we’ve been living in. We also did something big – and bought a camper! It’s something C has dreamed of for so long, so I’m really happy it was able to happen. He works so so hard 24/7, and to have the opportunity to make memories like this with our children will be something we will cherish for years to come with this! We’re excited to get movin’, so if you have any experience or recommendations on camper life I’d love to hear in the comments!
Home
I finally finished the pantry – ok ok ok friends I know, I’ve been saying I’m working on it forever and it was basically done but I had another major overhaul with it to get it just how I wanted. If you’ve been following for a while you know this has been my biggest ongoing organizational project in our home – and I think I finally know why! We’ve expanded and grown (when we bought our house in 2014 it was just C, myself, and baby Conner!) so 3 more people live here now and our needs as a family are evolving and changing. I finally have a good system for my baking/cooking stuff, the kids school lunch snacks, at home snacks, and more. Can’t wait to share soon!
We also finished our family room update (I took all the pics today of it, so that post will be going up soon!) found a large couch that will fit our entire family + then some, and have a good space where Colly can relax/play/do her physical therapy. It’s literally the perfect landing zone for all of us now. My office is right off the kitchen, next to the family room, so during the day I can work and keep an eye on Colly in the essentially the same room which is a dream.
I have some fun things planned for the blog for October, and I’m really hoping I can stay focused on my work throughout everything we have going on. I am so very fortunate to be able to do this from home and contribute to my family, while still being with my kids when they need me. With Colly’s ongoing appointments it’s really been such a blessing that I don’t take for granted.
Talk soon! Hope you all have a happy October ahead!!
