Leading up to Christmas, Daddy was very busy with the Christmas Eve-ish service at church while Mom was busy being an elf. Maggie got shuffled around a little bit, but we are so grateful for all the friends that stepped up to help us out.
|Thank goodness for technology|
|Big girl bed now!|
Since Christmas, we have been trying to get the apartment pulled together. Man there has been a lot to unpack and find homes for. Fortunately I feel like we are getting a bit closer. Once we get it show ready, I will be sure to share the pictures. A really cool thing we found out is that we are in the same exact apartment that some beloved friends from Iowa were in. The Weavers were the first tenants in this exact same apartment and shared with me that they have many treasured memories here. How cool to know that their home is now our home!! The view from this apartment is awesome. You can look right out to the mountains and a trail is just down a little path from our apartment. Shawn is hoping it inspires him to get out there and work out a bit. The sledding hill is also right outside Maggie's window. Three siblings made a point to come welcome us to the neighborhood. How sweet is that! I think we are going to enjoy our new home and neighborhood.
Originally, we requested a 2 bedroom, but ended up with a 3 bedroom because that was what was available. Ironically (or God), another Realm family inquired about any Realm families that may have an extra bedroom. So, we are "adopting" a 20 year old daughter. Makayla currently only has a seizure about every 3-6 weeks, so she needs someone around all the time for the "just in case". Her family is from Idaho and were all originally planning on moving down but are hoping this will help her develop a bit more independence. So, now we have a 20 year old and a 20 month old (next week). Hopefully this is a win-win. She has a place, and we have a bit more help with all of Maggie's school, food prep, housework, etc.
|Maggie couldn't be with us because of the laws|
|The go-getters at the Capitol|
Since I was going back to Iowa, I figured I would make the most out of the trip and try to make some headway for legislative change regarding medical marijuana. Monday evening, Dad and I met with the State Republican Senate leader, Bill Dix. He was open to what we brought to the table and hearing our journey. Regardless if he votes favorably or not, it was a pleasure meeting with him and I was delighted that it worked for us to meet up with him. Then on Tuesday morning, prior to flying out of Des Moines, two other moms and I met with the Governor's policy adviser. Again, I was just glad to have the opportunity to share our story. After that, I also did an interview with WHO-TV. They are actually working on a bigger segment regarding the medical use of marijuana. It probably won't be aired until February, but it is a great opportunity for more exposure. So, all in all, a GREAT trip. I will be posting more about legislative stuff soon. Hopefully there will be a lot more to talk about as bills get proposed this legislative session.
As for the Magsters, when I returned home, I noticed a few things. Her spasms seemed a little less intense. Woohoo! Shawn had upped her CBD the day I left. I have a feeling we are getting closer to her therapeutic dose. She also seemed to have a few new sounds. On top of that, now she is a stealth pooper. She had a big messy surprise for Mommy after Daddy picked me up from the airport. But, that is great improvement. We used to know every time she pooed because it took so much strain and effort. The fact that she can poo without us knowing means it is now a much easier process now!! And yes..once again, we are very excited about poo!!
She also flashed some sweet smiles and even giggles the night I got home. It has been since August since we have seen the sweet giggle coos!! It wasn't particularly in response to anything, but wonderful to see!!
Other things...many have noticed that her nystagmus (jumping eyes) is not nearly as prominent. More focus and attention in her eyes. She is pulling herself off my shoulder much more. This shows she is gaining more neck control and trunk control. Though improving the strength is important, this is actually more of a neurological issue. Her brain is sending the needed signals to her body for her to make this progress!! Yippee!!
And, finally, we have given her the last dose of Zonisamide. This was the first day since last fall that we have not given her that drug! It is also the first time since last summer that she has only had 2 pharmaceuticals in her system!!! Woot woot! That's my girl...getting stronger and stronger and decreasing meds!! #CWupdate
|Deep in thought|