As you can see from this picture I really have my hands full. Thankfully my parents are here helping with the twins, because there is no way I could manage them alone right now with Henley while Kyle is at work. So here's an update about what we've been doing!
The twins were thrilled to see Henley. I think more happy about her being home than about me being home! All we hear from them is HENNY HENNY HENNY... Henny cry! Henny poop! Henny eat.... etc.
Saturday Kyle and I went car shopping. The idea of driving the 1 ton long box back and forth to Minneapolis is just not realistic. I am fairly certain, although we haven't tried it yet, the big truck would not fit in the parking ramp at the U. With the help of selling a few horses last week, we were able to buy a nice used Ford Taurus that previously belonged to an 82 year old lady. All three car seats fit in the back and it has a big trunk, so we're set.
Henley was surrounded by family and friends on Sunday at Our Redeemers Lutheran Church, where she was welcomed into the church and baptized. (I'll post some pictures on the blog) We had a small family luncheon afterwards at our house.
Monday we did labwork in Dickinson. When the results showed up on mychart, I just called one of her doctors in Minneapolis and consulted over the phone. We were thrilled to see her red cells up, but as expected her neutrophils had dropped again. Arrangements were made to get the medication to Dickinson so she could have another shot to boost those numbers into a safer zone today. We will now get the medication and give Henley the shots ourselves as needed (likely 1 or 2 times a week). Her next blood check is Friday.
As long as things continue to go well she does not need to be seen in Minneapolis until next week. This could of course change at anytime... so I just drive around with the car packed and ready to go for now.
One other thing I did today was register Henley with the Shwachman Diamond Syndrome Registry. I've been doing a lot of research at night trying to collect more information and here are a few interesting numbers. There are 154 SDS patients "pinned" on our support group's map (of the world). As of July 2017, there are only 192 SDS patients registered with the SDS Registry.
