I'm finally giving a update. It looks like the last three years I've been so busy I did not update this page. Last time I updated we just moved too our new home. Things really have been busy. Ben has been at Coopersville schools since Fall 2014. He is now planning on going to a combination of first grade and special education classes at Coopersville in the fall 2017. His health has been better this year. He has struggled with seizures, but the last year they have been fewer and he is starting to physically get back to where he was. He is starting to be able to use a k-walker again verses his pacer with help of course. His speech has improved and he says some very comical things at times. He is hopefully going to receive a motorized wheelchair that he can drive himself around. He is excited to drive himself and get that independence. He wanted to take the one we tried home that day. Ben's heart is stable and Dr Lacina plans to see him again in the beginning of 2018.
Dan and I are extremely busy. At times are heads are spinning and we feel like we are not keeping up with everything. Allison and Ben are both doing so well, so I guess we must be doing something right. With Benjamin getting the motorized wheelchair we are starting the process to getting of wheelchair accessible van. We are applying for grants and researching what will be best for us. We have started a Wheels for Ben group on Facebook that we are going to make live soon for people to see our progress and donate too if they feel they want to help.
I could write for pages on this sweet little boy, but for now I have to run. Have a great day!
Tuesday, June 3, 2014
Benjamin has made huge progress since his surgery last July. He has also grown a lot. We just ordered him new orthotics and are going to be ordering a new gait trainer. He is doing botox therapy at Mary Free Bed to help loosen him up and it seems to be helping. He loves to walk in his gait trainer and is really moving around. He has been going to the Ottawa Area Center for school and therapy, which he will continue in summer school. During the summer he will also be doing therapy at Mary Free Bed. Then in September he will be transitioning to Preschool at Coopersville Schools. His heart seems to be doing great. We were able to wean his medications and he will be being checked again by Dr Lacina in July. Things seem to be going good and keeping us busy.
Benjamin has also had a change because we have moved to a new house. We actually closed on our old house on May 30th. At first he kept asking to go home, but now he is really starting to like the place. It is better set up for his needs.
We also are planning a summer trip to Traverse City and are looking forward to some family time. We are also looking forward to Ben's 4th B-day. It is a distant memory what it was like four years ago. We are all thankful for that.
Allison is growing big and is sad Kindergarten is ending on Friday. Although she is excited to spend time with her Grandmas and to go to vacation bible school.
I hope to give you a update soon, but no new is good news. :) Thanks for checking in!
Sunday, December 29, 2013
Happy holidays to everyone. Sorry we have not posted in a long time. Ben has been doing great! We had a cardiologist apt back in November. He was at 96% for oxygen which is wonderful. We have never seen it so high. We weaned him off Duiril and are planning to reduce his Furosemide in Jan. He will go back around March. It was his best cardiologist apt ever. He really loves Dr Lacina and is better behaved due to understanding everything much better. His heart seems to be in check and we couldn't be happier.
Christmas was great. We just stayed home and enjoyed the kids. Ben got a big Semi-truck that says McCarthy Racing on it. Allison got her Elsa Doll and horse stable. They were happy campers.
Ben's school is going great for him at the Ottawa Area Center. He loves it there and is benefiting from it. Although he is so smart he may be moving to Coopersville special education next fall if I can work out all the details.
On Dec 27th Ben went to the spasticity clinic for a evaluation. They discovered his left leg slightly shorter than his right. This may be making things harder for him so we plan to get a insert for him. We may be having Botox therapy to help him move better. Right now his hips look good, but they are concerned that they may come out of the socket if he does he get up on them correctly more. So we are keeping busy with his care.
I am working part-time and really am liking it. I can keep up on Ben's care better and can still get a creative outlet at work. Enjoy the New Year. I hope to be updating better in the future.
Thursday, September 12, 2013
Benjamin is doing well. We have been busy bees at the McCarthy household. We got a new driveway and have been working on a tiling project. Ben has been very busy since we got home from surgery. He was going to Mary Free Bed for OT until he started at the Ottawa Area Center on Sept 5th. He seems to be enjoying going there, and it really seems like a wonderful place. We are working on getting a bus accessible stroller for him. We are also taking him to get AFO assessment for his feet on the 20th. We plan to go to the cardiologist in Nov. At his last visit he was 90 on the pulse ox and I hope he continues to do well. Allison has been enjoying kindergarten at Coopersville and is adjusting well. I have been working part-time so that I can manage Ben's care much better. I also feel more balanced between home, work, and doctor apts. Things are going great, thanks for all the thoughts and prayers.
Monday, August 19, 2013
Friday, July 26, 2013
The visit to the cardiologist went well today. His heart and lungs look good. We are going to try and wean some of his medications, because his heart is doing good. Hopefully he will not be so sick to his stomach, once we wean the meds. Thanks for checking in and have a great day.
Thursday, July 25, 2013
Things are going well. I seem like I am more busy now that I am home. I have so many things to catch up on. Here is picture of Ben giving the camera cheese! The tests seemed to have gone well on Tuesday. Tomorrow we have a cardiologist visit. I am keeping my fingers crossed that he is looking good and recovering well. My only concern is how much nausea Ben has and his eating has not picked up yet. His incision looks great, and I am getting in the grove on the medications. Keep praying.