Frazer turned 40 last week!! He had a great day and we were able to celebrate him well with a a bunch of friends that night. I'm so thankful for him. He is truly my best friend, he is my rock, he is my heart. I love him so. :) Our 15th wedding anniversary in a couple weeks on November 9th...so, so grateful God brought us together. We've been through a lot during those 15 years and I can't imagine not having Frazer at my side living this life with me.
Elle's med situation is going GREAT with her gtube. She tolerates it well and she (and we) are so, so grateful to have Bob the (gtube) Button taking the medicine instead of Elle. It has been life-changing for sure. And shockingly enough, she doesn't try to pull it out - she only is aware of it occasionally when her hand brushes over it and she will absentmindedly fiddle with it, but other than that, she leaves it alone!
After Elle's gtube placement, we noticed a decrease in her seizure activity as her drug levels stabilized and her abilities kind of leveled back out to her 'norm', appetite came back, etc. But then she got a sinus infection and was down for the count for a good 10 days. That was not helpful. She is healthy now but the frequency and duration her seizures still seem to be on the rise...even more so this weekend and today even though she just had an infusion last Thursday. Not sure yet what we are going to do about that.
The good news is that cognitively, she is doing really, really well. We see it at home and her teachers see it as well - an understanding of things that we haven't seen before (or in a really long time). But just like with everything with this disease, it's complicated. With her increased awareness of herself and the world and what's going on, it seems like she is struggling - like she gets frustrated because maybe she can't do what she wants to do or what she used to be able to do or what she sees other kids doing. Her awareness of these things makes her sad or mad and/or belligerent. And that's hard.
One of the other moms who's son is on this enzyme-replacement therapy said it well earlier today - there's forward movement and backwards movement all at the same time. And it's so very hard to process and deal with that and we struggle so much with trying to figure out what's going on with our kids and trying to fix the problems the best we can. It's heavy and sad and hard and exhausting and it just beats you down.
As I write this, my heart feels raw and broken. I struggle. But I also know my Jesus lives. I know He loves me so much that I can't ever even fathom the depth. I know that He is carrying me and holds my raw, broken heart in His hands and grieves with me over the brokenness of Elle's body, over the loss of Milla. I have nothing if I don't have Jesus.
We are entering into the Christmas season in all it's crazy glory. Be still and know that He is God. Remember and celebrate and be in awe with me that He came to earth so that we might have true life.
Milla's birthday is in 3 days - Thursday, November 2nd. She would've been 7 years old. She was doing great last year on her birthday, but just 3 days later she began to decline. As this week passes and as the next 3 weeks come and go leading up to the 1-year anniversary of her death on November 26th, I feel (and remember) fear and sadness and anxiety and such loss. Our grief over Milla flows into our grief over Elle. It all runs so deep and is all so complicated. Please pray for us as we enter this season.
Also, we would love it if you celebrated Milla's birthday with us Thursday by enjoying doughnuts from your favorite doughnut shop. Milla LOVED doughnuts and that's what she always wanted for her birthday treat. :)
There is so much to grieve over but yet much to be thankful for as well. As Milla used to say all.the.time, 'Pray!' She would pray without ceasing, especially during meals, and she would point to all the things she was thankful for...the lights, the table, the food, the ceiling, the chairs, the people at the table...things we take for granted every minute of the day, yet she would remember to be grateful. God used her, and continues to use her, in mighty ways. Don't ever underestimate a life - no matter how small - God's precious image-bearers that we are.
Praise God, from Whom all blessings flow! Praise Him all creatures here below! Praise Him above, ye heavenly hosts! Praise Father, Son and Holy Ghost!
Much love and thankfulness for you!
Dana
