June/July 2023

 Happy 5th of July!! We had an awesome weekend doing ALL. The. Things! It was such a fun weekend and a perfect mid summer break! Feeling really blessed and have a full heart at the moment! ❤️ 

I say this every time but a lot to update on! I am just gonna write and see what happens, so this may get long!! 

Few things we are doing this summer… Swimming lessons at the YMCA! everyone moved up to level 2 this session. They are so much more confident in the water and I am loving seeing the improvements. Gymnastics at the RHS. I’m pleasantly surprised by how well this is going. I wasn’t sure, but Elliott and Molly are loving it! We are also doing a sports sampler camp through the Y and it’s 8 weeks, 2 weeks of 4 sports. So we’ve done soccer, baseball and this week starts basketball. It’s fun to see what they are interested in. They are also in school for the rest of July, then start again in the fall. We also have Elliotts weekly speech/OT. He will be starting physical therapy next week, too.  Our schedule is pretty consistent but also leaves time for fun, too.. perfect mix! 

Elliott - 

Kind of dreading this update, but it will be good for me to look back on when I am ready. Elliott has epilepsy. For me to be able to say that now without panic and anxiety creeping in, is a huge step. It has been so hard for me to even put into words the hold this has had on me. I feel like I have changed as a mom in just a few weeks. The story of this goes… at the end of Feb Elliott’s teacher called me and said they think he may have had a seizure at school. He was staring off into space for over a minute and then when they got him “back” he was angry and tired. Keep in mind this is during the time we were still going back and forth trying to get an autism diagnosis. I didn’t really think much of it honestly but did follow up with my dr who referred us to MN epilepsy clinic. I got an appt at the end of May and it was off my radar… fast forward to May. I bring him for a EEG and was fully expecting to be sent home all clear. Wrong… he was having multiple seizures during the EEG both awake and asleep. (He fell asleep while monitoring which surprised me but they said they wanted to see) I had no idea. I somehow managed to get through that appointment and hear the dr talk about treatment, medicine, future. It was all so overwhelming (still is!) so for now, he is on a twice daily medicine that he will continue to take for 2 years. He also has a rescue med for if he ever has a seizure that lasts more than 3 minutes. He has never had one that long, and actually they are very short and easy to miss. I still am not even 100% sure when he’s having them… it is so strange. They are called absent seizures and the dr said many times school is the first person to really notice that they are happening, which was the case for us. Anyways; the med was hard to get and expensive but luckily insurance is covering. Thank goodness! The clinic has been really helpful and on top of things. We had an MRI of the brain a few weeks ago and that showed no permanent damage done, great news. We did some genetic testing to see if we can find out anything there and will meet with the genetics team at Childrens in a few weeks. At some point; he will likely be admitted and constantly monitored via EEG.   Unsure of when that will be. For now, he seems to be doing ok on the meds. It’s tricky with autism and epilepsy because sometimes the symptoms are similar, so trying to determine what is what has been challenging. I just never imagined that he would actually have epilepsy. I think because of the autism and it took so long to get diagnosed but I had years to process what this could mean.. the epilepsy diagnosis feels like it came out of nowhere and has been a lot harder for us to handle. Especially me, as a mom emotionally. It has been really tough. 

Other than all that fun stuff, Elliott is doing great! He loves school and we actually met up with some of his school friends a few weeks ago. He LOVES swimming and seems so confident and happy in the water. Tom and I have a pretty good handle on him and can usually work together well to make sure he’s regulated. A lot of what he struggles with tends to happen at home, with us, so from the outside it may seem like this isn’t a huge thing… just another reminder we never know the struggles of others ❤️ 

Sam - Sammer D! Sam is full of life! He has big feelings about everything, wears his heart on his sleeve. He is actually really sensitive but also is tough. He says “right mom?” After everything and it’s so cute! Right now he’s really into orcas and beluga whales. The facts he knows about them is amazing! He loves to “read” and will spend hours looking at pictures of whales in books. We are going to the library later to find him some more animal books and he is so excited. The simplest things in life can bring him the greatest joy and he’s just so fun. He has loved all the sports at sports camp so far. He loves his friends and is always asking to play with someone. 

Molly - Molly is my little shadow, my mini me, my boss ;) she is NOT afraid to be herself, be dramatic or tell anyone what she thinks. I love it but it also slightly terrifies me… ha! She is such a great helper and has a soft spot for Elliott. Those two are best friends and she takes such good care of him. She has a wild head of curls and she likes “wild hair” she is so much fun and she’s starting to be a big mamas girl. She wants to “see my mama” and “look at my mama” all the time. She is loving gymnastics and swimming! She’s not really into soccer or baseball yet but this week we start basketball so I’m curious as to how she will like that. So far she seems to be more of an artistic type ;) she has the most amazing imagination… the stuff she comes up with is so surprising! She still loves her pups, and had gotten into Barbies/little people figurines too. She loves crafts and coloring, anything artsy. Sorry in advance that mom isn’t gonna be much help in that department Molly! Ha! 

A few more weeks of school, then off till Sept! They will follow a typical schedule this year for pre-K 4’s and will move to afternoons in the fall. It will be a nice change up, I think! I cannot believe K is next year! I am excited and also trying to soak up all the memories with them while I still have them with me. 

We are going to DISNEY for their 5th birthday in Feb. We will be at Magic Kingdom for that day. I cannot wait to see their little faces when they see everyone/everything. It should be a great trip. 

I have been really struggling the past few months. Everything with E has been stressful and time consuming and then I am also feeling guilt for Molly and Sam. I have a call or zoom almost every day with someone for something.. the county, his epilepsy clinic, the pharmacy trying to get his meds… his therapists. I want to give everyone my 100% and that’s just not possible some days. Actually it’s not possible most days.. but I am trying my best and that’s all that matters. My kids will know we loved them and that’s what’s important. I have a tendency to doubt myself and feel like I am not doing enough, not a good enough friend,  blah blah the list goes on. I am really working on myself and starting to feel a little better. It is so weird to even say this BUT I am a special needs mom and even though my situation doesn’t look like everyone else’s (many have it WAY harder than I could even imagine) it is still hard for me and I can be OK admitting that and just saying I need a minute to process this. I will be ok, we will all be ok but right now this is just a lot. I am proud of myself for letting me feel the hard things but also being able to feel the joy that comes with this life!