An update on Big Sis!

We’ve had lots of baby spam over here lately (#sorrynotsorry), but things are happening for big sis too! Believe it or not, it’s time for Madison to start SCHOOL! Well actually, she should have started already but coronavirus came and placed us in limbo for the last, what, 8 months now?!

Madison has been a part of the Early Intervention program since she was just a few months old which provides kids with therapy opportunities through the age of 3 at which point they would transition to preschool. Madison turned 3 over the summer and so we had begun this process back in February, but once coronavirus shut everything down all our meetings and evaluations got put on hold. (And talk about worst timing ever.) Because of the quarantine rules, she wound up graduating out of a program in which she was already missing her last few months of, but was also now not set up to begin school either. This limbo has caused her to receive no in person services since March and we’ve definitely seen a regression in her because of this. It’s been HARD.

Over the last few months luckily we got the okay to resume her school evaluations and get things moving again. (Albeit they all had to be done virtually, but it was better than nothing!) And most recently we were finally able to schedule her IEP meeting! An IEP is an Individualized Education Program which is exactly what it sounds like, an individualized program tailored to a child with a disability or disabilities. It goes over the child’s current level of performance, goals for the year, the support and services needed for the child to achieve those goals, equipment needs, adaptations that need to be made, pretty much any and everything required for the child to have a successful education experience. If we want her to have something in particular, it has to go in the IEP.

Luckily we’ve been really fortunate with the team in our district and their support in doing what is best for Madison. I was very nervous for the IEP meeting, but we were essentially given everything we wanted for Madison. Ideally we will send her out of district to a school really tailored to children with severe needs like hers, but I don’t think she’s quite ready for that yet. Going to school and being around other kids more consistently will be great for her, but right now she still gets overwhelmed easily and will completely shut down and sleep through her therapy if she’s not into it. She’s also high risk for germs (and this worry was pre-covid), so we also don’t want to send her to school, and expose her to germs, if she’s not even going to be awake or get the full experience out of it anyway. With Madison the benefits always need to outweigh the risks, and right now sending her out just doesn’t fit the bill.

Thankfully the district has agreed to in-home instruction and therapy for her, which I think will be a great place to start! Madison will get education services five days a week, and then an additional 3 days of therapy services on top of that. The IEP is a fluid document and can be updated at anytime, so if we feel come spring she’s adjusted to being around so many new people and it seems “safer” germ wise to go to school, then we can update her IEP to reflect that and enroll her elsewhere. I’m really hoping that slowly transitioning her by having her begin at home where she is familiar with the environment and can still have me around will help her participate to her full extent and better prepare her for eventually attending a full day of school out of district. It’s definitely going to be a big change for her, but I hope the consistency will get her back on track. I’m in the process of officially registering her with the district now, and then our team will hire all of her teachers and we’ll begin! Wish us luck!

In addition to starting school, Madison will also be starting a new medication for her seizures. She really had a great summer with very minimal seizure activity and it was amazing. She was happy, awake, and cognitively just really with it and working so hard to play and learn. Then unfortunately in the beginning of August she had an out of character seizure which we came to believe was due to low iron, but ever since that, we haven’t been able to get her back to the baseline she was at over the summer. She began having atleast one seizure a day even once we got her iron levels back up. And although the seizures she’s having now are not as frequent or severe as they once were, it’s really defeating to go from almost seizure free to not. We can see her personality fall a little flat and that light leave her eyes and it’s an awful feeling. And since we haven’t changed any of her meds in a while, her neurologist felt it was a good time to try something new.

Now unfortunately the more meds that she fails, the less likely it becomes that we will find something that totally stops her seizures, but that doesn’t mean we stop trying! Her seizures have definitely evolved and don’t present in the same way they used to, so we still hold on to the hope that perhaps now that they’re different, we will find a med that better controls them. It’s always nerve wracking to start something new because although we hope to see better seizure control, each med also comes with a laundry list of side effects. This new medication for example can cause not only the typical side effects like drowsiness and nausea, but also low platelet counts and severe liver and pancreas damage. In fact, because of that we had to take her for baseline bloodwork and will have to go for frequent blood draws to check her liver and pancreas function while she’s on this. Scary right? In an attempt to lessen her seizures we now put her at risk for liver damage. It’s a really hard balance to find the right medication that helps control her seizures but also doesn’t compromise her quality of life. Yet epilepsy patients and care givers are faced with that hard choice every single day. Hopefully we see a decrease in seizure activity, minimal side effects, and get our girl back to a good place for when she starts school.

Madison is such a trooper that even with the craziness of virtual evaluations and changing up meds, she’s still taken to becoming a big sister like a champ! She truly smiles whenever Caroline is near her and has been absolutely loving all of the extra quality time she’s gotten with daddy (her hands down fave person) over these last few weeks. I can’t wait to see their sisterly relationship really take off and to see our big girl continue to grow and shine despite what’s thrown her way. She truly seems like a teenager to us now and I’m so proud of how far she has come. Here’s hoping for nothing but positives as she starts these next chapters! She may be a big sister now, but she’ll always be my baby!

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