been a while...some updates

Hi everyone! It's been a while since I've posted so I hope some familiar faces out there remember us These past six months have been a blur since Maddie was diagnosed with benign myoclonic epilepsy in January. We've been to the hospital so many times and our stack of medical bills just keep getting bigger - ugh! I'm still home full-time taking care of Kelsey & Maddie due to the cost of daycare and I just wouldn't feel right not being there for Maddie with her extra challenges at the moment. The types of seizures Maddie has are very difficult to control. The only medicine that usually works we had to stop due to an allergic reaction. We are using two new medicines, given twice daily (oh what fun to get a toddler to take meds!), but she still has seizures daily. It absolutely breaks my heart that we can't stop them. They last for a split second but sometimes they cause her to bump her head and fall. Plus, she looks up at you each time like "what just happened to me". The seizures have impacted her development in a few ways. She's not using words yet and just mostly babbles. She also plays with toys more like a 9 or 12 month old would and constantly still sticks everything in her mouth. I do think she comprehends quite well, but she cannot respond with words. We try sign language but she hasn't shown much interest in that so far. It's quite common for language to be delayed with this type of epilepsy so we also have started speech therapy through EI. Let's not forget to celebrate our victories too! She's walking around great and almost running! It's scary sometimes since the meds cause her to be unsteady and wobbly but we'll take it. Oh, and she started taking her diaper off and walking around nude on occasion. Overall, we do some development happening, it's just slower than her sister.

Much of my daily struggles stems from Kelsey & Maddie being twins with their development being so vastly different. Obviously, we know the reason why it's so different but it doesn't make living it on a daily basis any easier. It's like having a direct comparison of what Maddie would be doing if she wasn't afflicted with epilepsy. Trying to dedicate time to them both, without focusing too much on Maddie, is very challenging. I sometimes feel guilty if I'm spending more time with Maddie because Kelsey happens to be thriving developmentally. I struggle to find balance. I feel like a failure as a parent because I don't know the best way to help my daughters. I pray all the time for Maddie to outgrow this sooner than later. I pray the doctor's are right and this is something Maddie will outgrow.

Thanks for listening.

Lisa

 

:hug: :hug: :hug: i'm so sorry you & Maddie are having to go through this! it sounds really hard. you are definitely NOT a failure as a parent - you are doing everything you can to help Maddie and no one can ask anything more from you. it sounds like you are just overflowing with love for your girls, and that means more than anything else. you are an amazing mom! :hug: :hug: :hug:

 

Lisa, I was literally thinking about you just yesterday and wondering how things were going with Maddie! :hug: I'm so sorry to hear that they haven't gotten the meds figured out yet; how long do the doctors think it will take her to grow out of the seizures? I'm sure this is so tough on you, and it is hard that you have another child right there to compare her with. Try to remember that all kids are different, even twins, and Maddie is her own person. I think it's great that she's running and that her receptive language is good; you're so right to focus on the positives. I really hope EI helps out immensely.

Please don't feel guilty about spending more time with Maddie. Every child goes through stages where they need more attention. Kelsey sounds like she's doing wonderfully and the time may come when they will switch it up and Kelsey will need you more. And you'll be right there for her, just like you are for Maddie.

Take care, and don't be a stranger! :grouphug:

 

Lisa, big :hug: You are not a bad Mom! I definitely agree with focusing on the positives and each victory with each twin. I agree with Valerie that this might be the time that Maddie needs you more and at some point Kelsey might have a time where she needs you more. You love both of those girls and it sounds like you give them both plenty of encouragement and understanding. :woman:
PS: Don't forget to celebrate your own personal victories!