Surgery update

Hello friends! Surgery was a success! The neurosurgeon felt good about how the surgery went. Now, they will monitor him for a week. The second surgery is scheduled for next Wednesday. Below is an update that I placed on his Facebook page For the Love of Cutter... Good Morning! Whew, what a night. First of all, around 9 his right eye turned black and swelled shut. The doctor told us to expect this. So glad that Dr. Chris Rowland told us this first to prepare us! Secondly, only one parent could stay in the PICU, so Chris left to go to the waiting room to try and rest. He graciously let me stay with Cutter. Very thankful. Then, around ten thirty they gave him an in and out catheter to try to get him to wet is diaper. He had not had one since before two. That was miserable, and it didn't work! Around midnight they decided to give him a real catheter. Boy, I prayed hard. I saw how miserable it was the first time for him. Then right before they came back he peed! Praise The Lord! He was really nauseous last night and got sick several times. We had to change his clothes three times. He cried a lot and was up every hour. Since Cutter cannot tell us he is in pain they gave him some morphine to help him get comfortable. It did not help that much. We finally got some sleep around four. Then the doctors started coming by around 8. He asked for food, and the pediatrician said we could feed him. He ate two bites of a biscuit then fell asleep. He has had many seizures, so this is good news! Now, we wait. Hope to get to the children's floor sometime today. Thank you for the prayers! We will update again soon!

Cutter Update

Hello friends, Yesterday was a doozie. That is for sure! It was a long day. But we made it through! Today has went well. Cutter did not do terrible with the intra-nasal sedation. At least it was not an i.v. He will get an I.V. after he is completely under anesthesia. We suspect that surgery started around 9:30. He had a CT scan before surgery and will have one afterwards. I am guessing we will get to see him around 3:00. Chris thinks 4:00. So, we will see! Thanks for all of the prayers! We feel them! Praise God for the calmness we feel!

Here We Go (again)!

Hello Friends! We are back in Chapel Hill preparing for surgery yet again! Surgery is scheduled for Wednesday at 8:30 a.m. Tomorrow Cutter will have a CT scan without sedation (wish us luck and pray he does well), an appt. with the neurosurgeon, and pre-op. It will be a very busy day! He is supposed to be sleepy for the scan so we are going to get up bright and early! Whoo-Hoo! Mommy is not a morning person. We are feeling pretty optimistic and good right now. We certainly feel God's presence and the prayers of our loved ones! Please keep them coming. We can't help but wonder if it will really happen this time. For some reason God has just not seen fit for it to happen before now. It has been hard being patient, but we know it will be worth it! We will update as much as possible and as quickly as possible! We thank you again for all of the support!

Cutter News

Hello Friends, There is so much I need to blog about! I hate that I have not had a lot of time to keep the blog updated like I would have liked. First of all, on January 11th West Marion Elementary School held a benefit for Cutter and his medical expenses. We could not believe the turnout that we had. The benefit raised over $10,000! There are no words to describe that gratitude that we feel. What a blessing! God definitely has provided. The benefit was wonderful, and seeing our community come together for our son was a feeling like no other. The love we felt that night was overpowering. We are so blessed to have so much support from our friends, family and our entire community. You wouldn't believe the way West Marion swooped in and made the benefit the success that it was. All of those people working so hard for my family's benefit was humbling. We will forever be in debt to all of those that have raised money for Cutter. When we started this journey with this disorder we had no idea how expensive the medical bills and medications would be. Even with insurance we pay A LOT of out of pocket expenses. These benefits have helped tremendously, and we will never be able to thank everyone enough. We just hope that in the future we are able to provide someone with the same love, compassion, and financial help that everyone has provided us with. Cutter is able to go back to preschool for now (until the surgery date gets closer). He is going twice a week for a few hours each time. This has been wonderful for him. The teachers are all so helpful, caring and understanding. They handle him very well, even through his fits of excitement and reluctance. The patience that they with him makes sending him to school very easy. He got his first IEP progress report, and it looks like he is doing great! Right now he is getting speech and physical therapy services at school once a week each. On Thursdays we have an occupational therapist that comes to the home to do OT with him. She is seeing good progress, and she does a great job on giving us ideas about how to work with him at home. Cutter will be in this same preschool class until he starts kindergarten, so three years total. I think this is exactly what he needs to help with the delays that his disorder has caused. As far as his seizures go he is having between 2-5 a day. There have been a few days where he did not have any. The episodes are still brief, but they do make him a little tired still. His medications are all the same. They do not want to change his meds until after the surgery. His two surgeries are scheduled for March 13 and March 20. We have to go down on March 12 for his Pre-op and CT scan. They are going to try to do the CT scan without sedation. We are nervous about this. Cutter was only 3 months old the last time they did a scan without sedation. We are unsure of how he will handle this process. Hopefully, it will be quick and painless. I am sure there will be lots of Hershey kisses and Toy Story goodies given afterwards! Hey, we will give him whatever he wants. Poor little guy, he has been through enough! We continue to see great things happening developmentally. He absolutely loves his brother, and Maverick copies everything Cutter does! Maverick has been really good for Cutter, and vice versa. I am so thankful that they have each other. They love to sing and dance and pretend. Cutter has a wonderful imagination, and he is teaching Maverick how to "make believe" now, too. Though he still struggles with communicating all of his needs, and potty training is not going as we had hoped, we feel he is making good gains. We are learning that patience is the key, and we don't always have as much as we should! However, with lots of prayer, and lots of support and encouragement, we will get through this! God will keep us safe through this storm! We appreciate all of the prayers! We will update again soon!

Surgery Update

Hello Friends, Most of you already know, but for those that do not, Cutter was not able to have surgery yesterday. Maverick came down with the flu on Friday. Cutter ran a slight fever on Saturday, then started again Tuesday morning at 3:30. By the time it was time to go to the hospital his fever had broken, but he did still have a cough and some congestion. Because of this it was decided that Cutter could not have anesthesia. There were too many risks involved for the surgery to happen that day. They told us that he could have surgery in 4-6 weeks. We were on an emotional roller coaster yesterday, that is for sure! We were filled with confusion, relief, sadness, and frustration. We know that it is all in God's timing and that we must be patient. This definitely gives us more time to prepare and more time to pray for little Cutter and the doctors involved. West Marion Elementary School is doing a benefit dinner for our family on Friday night, and now we get to attend! We were sad that we were going to have to miss it, but now, we won't! We are so thankful for all of the hard work that our friends have done to get ready for the benefit. And the support from our community has been AMAZING. We are feeling so blessed right now! Chapel Hill called today, and Cutter's surgery has been rescheduled. He will have pre-op on March 12, his first surgery on March 13, and his second surgery on March 20. It is easier said than done to not question God's plans, but we are trying hard. We know God loves us, and we know He loves Cutter more than we do. He has his best interests at heart, even though it is SOOOO hard for us to understand. For some reason, it was just not time this time around. There is a bigger picture, and we hope that in time, God will reveal it to us! Thank you for your continued prayers and support! We will keep you updated!

Almost Here...

Hello Friends, Well, the day is drawing closer. Surgery Day will be here before we know it. It seems so surreal. It seems like it is finally going to happen this time. We have been trying so hard to keep Cutter from getting sick before Surgery Day. We haven't even let him attend preschool in a few weeks, and he has asked to go! However, no matter how hard we tried, sickness has arrived. Cutter is not sick, yet, but Maverick has the flu! We are all on Tamiflu as a precaution. We hope and pray that Cutter does not catch anything. We need him to stay healthy and germ free until time for surgery! It is hard to describe what we are feeling right now about Cutter's surgery. We are hoping that this is the solution, and that this is IT. We are scared about the process because surgery is a scary thing. We are sad that he even has to go through this. It just breaks our hearts. However, we KNOW that this is what needs to happen. We KNOW that God is going to take care of him. We KNOW that God will take care of us, too. He will handle our doubts and our fears. He will take them away. In the past we have felt God's grace and mercy. Both are very powerful feelings. We are expecting no less in this situation. We know He will provide. There is so much going on right now as far as support goes. People have donated days to Ashley so that she can take off work and be home with Cutter while he recovers. People have donated money to help with travel and medical expenses. People have given benefits in the past to help with medical expenses, as well. West Marion is hosting a benefit spaghetti dinner on Cutter's behalf next Friday, January 11th. They are working so hard to get this accomplished and make it a success. We can't begin to thank you enough for all EVERYONE has done for us. The support that we have received over the past 3 years has been phenomenal. There are no words to describe just how thankful we are. We will continue to update the blog as things progress in Chapel Hill. Right now, the next steps are to get Maverick better, get everything packed and ready to go, and pray about the days ahead. We love you all!

Surgery Update

Hello Friends! We found out that Cutter will be having his first surgery on January 8th. We are supposed to be there by 7:30 a.m. to get started. We are not exactly sure how long we will be in Chapel Hill, but we do know that it is a ten-day minimum stay. It will all depend on how much information they get and how long it takes them to get that information. Hopefully, all will go well and his second surgery will be on January 15th. They said that Cutter will only have to stay in the hospital 2-3 days after his second surgery. After six weeks he should be fully recovered! Please keep us in your prayers. God has been so good to us, especially with this situation. He has laid everything in our path and everything has went very smoothly. We anticipate the same with the surgical procedure. Thank you for praying! We will update you soon!