So I can't remember where I last left off? I think it was right before we went to Philadelphia last week, so that's where I will start.
Our appointments went well. They decided to take Landon to the 4:1 ratio in hopes of controlling his seizures. They also decided to take Landon off his topomax! Topomax and the diet don't seem to jive with each other, and cause a person to become acidic(which landon did). So the hope is without topomax he will start to drink. They thought he looked amazing and very interactive! He is super happy and did awesome at the appointments. We also got news that he tested negative for c diff...but were warned that sometimes that happens without it really being gone! I was shocked, but still have suspicions. He went 4 times yesterday...so unless he has some other illness I would say it's back! We will have another culture done next week if not sooner! We also discussed the NG tube. It's not going well. He has been throwing up a lot lately(which is another issue) and the tube is coming out his mouth. I'm not sure how much longer we can do the tube? 6 weeks is long enough!!! We really are pushing to see a specialist, but they want to wait a little bit. It's frustrating watching him constantly have to have it put back in!
He continues to do amazing! He has his BEST day of therapy ever yesterday!! He was standing with little assistance(and leg immobilizers), rolling well, sitting up, grabbing awesome, and even doing hands and knees well. It was a sad session though...our physical therapist is moving out west. That was our last session with her, and we will truly miss her!
So today we are preparing for surgery day tomorrow. We are heading to Pittsburgh tonight since we have to be there early! We don't have time to sit in traffic! Pray that it all goes fast and smoothly. He is such a trooper! Landon had bloodwork yesterday, and didn't even flinch...it's pretty bad when you stop feeling that pain. It breaks my heart all our babies endure! It's just not fair.
Landon continues to battle the ugly seizure monsters. He is having more than when we originally started. I'm praying hard that God answers my prayers and helps Landon beat these things! The seizures are seeming a little more intense again. So I'm not sure what's going on? He I also doing a lot of this weird eye fluttering thing? Im worried about it being a primitive reflex? Anyone else have any thoughts? I'll try to get a video. It happens when something gets close to his face...his eyes flutter rapidly. I guess only time will tell!
On a happy note, we are really excited to spend time with family and friends this week!! I love the holidays. We put our 4 Christmas tress up over the last 2 weeks, but there is still lots to do. I'm not sure if I have the energy though. I personally am really excited for this Friday!! Yes, im a crazy person who LOVES black Friday! My dad and I go every year, and have a blast!
I'm thinking of all my Friends more than ever this week! Praying for everyone to have a Very Happy and Healthy Thanksgiving!!!! Lots of love from our family to yours during the holidays!
Xoxo,
Heather
I hope that the surgery goes well and that you all have a great Thanksgiving. I have been keeping you guys in my prayers.
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