Hello everyone. I just wanted you to know that at the request of EVERYONE, I thought I better get on here and post before the search party comes out here.
I'm not sure where to start considering it has been over a month since I have posted. I would like to start off by saying THANK YOU for all of your e-mails, comments, and even phone calls. I have been trying to deal with a lot of info and every time I think things make sense, they don't.
I will start off with and update on Coltan. He is doing well in school. His report card looked great. Soccer for outdoors has already started and he is currently on two teams again. He practices every Monday and Thursday night. He is also in track in his middle school so he leaves for the bus every morning at 6:55 AM and gets home around 5:15PM. So as you can tell, he is usually very tired.
Cody has also started full swing of soccer. He also is on two teams (one of which him and Coltan play together on). So he practices Monday night with Coltan and then Tuesday, Wednesday, and Thursday on his other team. His practices are about 40 minutes away so we are going to start racking up the miles again on the car.
Coltan and Cody's Great Grandfather passed away on March 17th. That week was also spring break for the boys so thankfully they didn't have to miss any school. Chris and Jessica came and picked them up and left for Kentucky to arrange the funeral. Jessica said it was a very nice service and that a lot of the small town residence showed up to pay their respects. She also said she couldn't believe how well the boys were for that time while out of town.
Coltan and Cody's grandma and grandfather were not able to make the trip from Kansas City to Kentucky because Jerry (their grandfather) is still on hospice. He is still at home and has had problems with fluid in the lungs and stomach. He has been put on oxygen and has been having a decrease in appetite. The boys and I continue to pray everyday for Jerry to have fulfilled days and no pain.
Now on to Carson, well he still keeps me very, very busy!! He had an appointment with his GI Dr back in Feb and Dr K thought most of his problems with not eating was due to acid reflux. So he switched him from Prevacid to Nexium. We went back three weeks later and he was down another 8 ounces. So now we are giving him Nexium through his NG tube. We actually go back this Monday for a follow up but Dr K is pretty sure that he will end up with the Nissen. That is a patch that goes over the hole from his stomach to his esophagus. It will prevent the acid to go from his stomach upward causing all of his pain. So this will be another surgery that I'm really not looking forward to. I took him to the Dr and was really hoping that we would get the NG out and found out surgery was a very strong possibility. I did however talk to Pam from Rhett's blog and she said it was the best thing for him. So with that info, I'm keeping a positive attitude.
Carson also did the sleep study and actually passed!! They are looking at his iron level and testing him for lead. We went today and drew blood for it and would you believe my strong big boy was actually laughing with the nurses while they were poking him? I couldn't have been more proud!
We did the heart monitor for 30 days and wow....that was exhausting all in itself. The doctor contacted me several times for his bouts of bradycardia (meaning he has events where his heart beats to slow). He did order a pulseoximeter for my house for his nap times and sleeping at night. That alarm also goes off a lot as well. I'm not sure when we are getting rid of the monitor. Dr A has tossed around the possibility of giving him some oxygen at night but we haven't moved forward.
His sleeping hasn't gotten much better at night. We still go to sleep anywhere from 10:00PM -3:00AM, but on average around midnight. So I'm still trying to work on that with him as well.
Carson also still goes to Occupational therapy every week and has improved on so many of his motor skills. He still uses all of his sign language and Spanish and now talks in sentences with 7+ words in it. He is also amazing me by starting to write "some" letters and numbers. He is able to write A, C, H, I, L, O, T, U, V and write 1, 3, 4, and 0. He tries to draw cars and remembers to put on two wheels. He also tries to draw stick people and triangle and squares, and circles. He had an appointment the other day with the Behavioral Medicine for his eating and possible autism ( which he does not have) and the evaluator stated that he is one of the most intelligent two year old that doesn't have autism she has ever seen. She even went as far as saying that a lot of the things she tested him on, he was above a 4 year old. I'm not quite sure where he got those brains but hey, I'll take it!
I have a months worth of pictures to download and start posting and will get to that hopefully soon.
Cody has a tournament this weekend in Springfield, Ill and according to the radar, they are expecting rain on Friday, Saturday, and Snow on Sunday. So I'm thinking there is a very good chance that Carson and I will be spending most of our weekend inside the hotel. My plan is to spend some time downloading some pictures of Coltan, Cody, and Carson and try to catch up on EVERY ONE'S blogs. I know that I have about a month to go back on but if I take a few a day I'm hoping to have everyone caught up by Monday. Coltan will stay in town. He has three soccer games this weekend as well.
I just wanted to say thanks again to everyone who has tried to communicate with me and make sure we are all okay. I will also try to update later some of my life issues. I knew this post would be very long so I was thinking just update the boys today and start with me later this weekend??? I feel like my long break is now over and I'm feeling like blogging again and following along with everyone else. You all have been such a huge support system for me and there had been so many nights that I wanted to jump on and vent but for one reason or another just thought it would be best to be silent. Overall I'm getting stronger, healthier, and happier everyday. I just had to clear my head and make sure I was keeping focused on staying away from certain negative behaviors.
Hope everyone has a wonderful Friday and a great start to the weekend.
How to Thrive Despite Chronic Illness
12 hours ago