For We Walk by Faith, Not By Sight - 2 Cor 5:7

I got a call about Jace's refill of Sabril over Christmas and set up a delivery to us on Jan. 4th. Well, the 3rd came and I got a call from the pharmacy saying they needed to reschedule the shipment. We did and I didn't ask why they needed to. I just assumed that they had some issue and wanted to be sure it would be ok to reschedule for the drop off to be on Thursday.

I get another call from the pharmacy yesterday and after talking with them I find out that the delay was that we needed to pay our copay. With the way our insurance works this amount would basically be our whole deductible. We were approved for an assistance program that would discount the copay to an extent but it didn't take off that much. Even with the discount program applied we would still have to pay $2400!!! This is ridiculous! The worst part was that we had to pay this before they could even ship the medication to us. Basically we had to come up with this much money to continue giving Jace the only medication the works for him. The math equals out to about $30 a packet that Jace takes and he has to take 1 1/4 packets twice a day. I don't get how they can charge basically $75 a day to keep our son's brain calm.

Even with all this "bad" news there are blessings that a occuring in the background. We are reminded that God has brought people into our lives that care about us. There are even people that we have not physically met but are linked to us by TSC that care about us.

Another friend that has a son with TSC told us about a Canadian pharmacy she got his Sabril from and gave me the contact information. We decided to get Jace's doctor to fax an order to this Canadian pharmacy since they offer the medication for $1.30 a pill/packet. We are going to switch from packets to the pills (that we will crush) so we won't waste as much. The packets can't be divided into fourths like a pill can. Since we are ordering through Canada it is going to take longer to get it shipped to us. We were concerned about this since we only have about a weeks worth left from last month. However this is where more of our friends we have not met yet have been a blessing to us. Justin has made friend with a couple on the Texas Bow Hunter Forum that has a daughter battling with TSC. She takes Sabril and they have enough to help hold us over until we can get his shipment in. They live 5 hours away and we were willing to drive there to get some from them. The couple told us there was no point in doing that and they would just mail it to us. God  is GREAT! I have to give a BIG THANKS to Paul and Michelle! I can't wait to meet y'all in March!

Of course we always have family that is there for us as well. We appreciate everyone that has been there, prayed for us or helped us out in anyway! Thank you!

This is the reason why I can easily take all this chaos and see God. He is there and He is working. He is orchestrating our journey to cross paths with people that are meant to be in our lives and to overcome obstacle that make us cling to Him tighter. In all this there is reason and purpose. Our faith may help someone come to know Jesus or make help another family realize they need to cling to God tighter, even in times that aren't difficult. It is hard but I must continue to remind myself that 



On a lighter note, I was asking Jace for a kiss this evening and he kept ignoring me so I wanted to see what he would do if I got sad. I started to fake cry and after about 10 seconds he walked over to me, put his head on my lap, and looked up at me.....I asked again for a kiss and he leaned in and gave me one. He is such a sweetheart! I love how cuddly and sweet he is!

Good night! :)