CHAOS! Loud! Love! Toys EVERYWHERE! LOTS of medical supplies! Schedules! Laundry OVERLOAD!
There is so much that changed when we went from 3 children without special needs and just the regular doctor’s appointments to 5 children and the youngest 2 with special needs. My oldest does have ADHD but it’s controlled with medications mostly. We added not only our sweet twins but we added multiple therapies, doctors, medical supplies, tests, procedures, medications and a lot more staying indoors.
Not only was my life rocked, even as a nurse, my husband and children have all had to change. We have all had to adjust our living around the twins in one way or another. I know that sounds horrible. As a mom, it still is at times. It was hard to adjust life to be around the twins and staying indoors and not doing things because they are immune compromised. It was hard to adjust to life where mom is now home ALL THE TIME! ((ESPECIALLY FOR MOMMY 😂)). But the saying ohh it gets easier as you “get use to it”. Well let me just be the honest one and say actually it doesn’t get easier. You learn a routine or try to and you adapt but getting use to it is not a thing when it comes to special needs children. With special needs children life is always changing in good ways and hard ways.
Walker and Wyatt, our identical twins, have multiple diagnoses, doctors and therapist. They have congenital muscular dystrophy- dystroglycanopathy, chronic lung disease, reflux, developmental delay, failure to thrive, feeding tube dependent, farsighted, clubbed feet and I know there are more I can’t think of right now. They have in home therapies that include physical therapy 2x a week, occupational therapy 2x a week, feeding therapy 1x a week, and early intervention 1x a week. Since we have so many therapies in home we have created a “therapy room” to do all of our therapies and play in! We see 9 different doctors and 6 out of the 9 of them, we see every month! This is just for the twins! The older three, Taylor, Belva and Maverick, all have at least 2-3 doctors they see! Thankfully not monthly 😂. Belva and Taylor are also starting occupational therapy in a clinic 1x a week! Needless to say we are, or I am, very busy! Below is pictures of our, messy in these photos, therapy room we created!
I often get the questions “How do you keep up with it all?” “Do you have a huge planner with it all written down?” Well actually I have used so many ways. When the twins were in the NICU, I had just my regular planner, but then I kept a binder with all of their stuff and papers. Once we got out of the NICU, I tried to continue the binders and use a planner on my phone and that ended quickly as we have LOTS of paperwork. 🙈I, then, switched to using a spiral planner. It lasted until I would forget to add the new dates to the calendar. 😳 I have tried MULTIPLE planners from undated to dated, daily timed planners to weekly planners, and even just my apple phone calendar. So now what do I do? Right now I have fallen back to a weekly planner that I can carry around with me and write in because I do like having a paper copy I can always reach for if my phone isn’t working. I also still use my apple calendar in my phone as I always have that in my hand or right near me so it’s easy to check dates in a hurry.
Our life is chaotic! Below is an example of our weekly schedule. Between all the schedules with therapies and doctors, and trying to keep up with all the school needs, medications to give, feedings, and housework, it can definitely feel overwhelming sometimes more than others. There are definitely times when I forget to write down an appointment or to add a therapy change in my planner or phone, but even during those times, and you just have to reschedule things and give yourself some grace! It’s bound to happen with so many people and so many things to do! If you are struggling to keep up with your schedules, day to day, or just the random appointments you or your children have, reach out to me! Let’s talk about different ways that could help!
Weekly Schedule (pretty much the same every week)
Monday: Belva and Taylor OT- 11a to 1p, Twins OT 3:30p-4:30p. Tuesday: Dr appointment 8a (monthly), Feeding Therapy 10:30a-11:30a, if need Drs after 11:30a Wednesday: Dr appointments 8a-12p (if needed), Early intervention 2:30p-3:45p, OT 3:30p-4:30p Thursday: Twins Physical therapy 11a-12p, dr appointments afternoon if needed Friday: Twins Physical therapy 9:45a-10:45a, dentist appointments or dr appointments if needed. In between all of this, is the house work and every 3 hour feeding tube feedings for the twins and medications and trying to be mom. It is a lot of care and chaos but I wouldn’t change it for the world!