Happy New Year!

This year has flown by again as usual. We have had a pretty good year. Daniel has done really well, only one surgery this year, Yay! Hoping next year we can stay out of the hospital too. Daniel will be 14 years old on January 6th. We are so thankful for his life. God has really used Daniel's life in many, many ways to teach us about His grace. We are blessed to see God's presence through our ups and downs. We are working on getting a hospital bed so I can get off the couch and back to my own bed at night. Both our insurances has denied buying one, so we will turn it in to our community home waiver. Praying it will not be too long of a process. Michael is doing great too. He turned 17 in November. Soccer season is over and it is now time for basketball. We enjoy watching Michael play sports, he is still loving bowling. He and his friend Steele are on a 4 man team with a league. They play every Saturday and love it!
I hope you all had a wonderful Christmas with your loved ones. Have a safe and prosperous New Year! I'm making my traditional black eyed pea, greens, and ham on New Years Day. We have much to be thankful for and pray for a great New Year!

It's beginning to look a lot like Christmas!

Hello and Merry Christmas! Daniel is doing well since his surgery. He has been battling a bladder infection for a couple of months. He finally got the all clear this week, infection free! We are slowly getting ready for Christmas. Michael has turned 17, oh my, Daniel will be 14 in less than a month! I hope you all enjoy your Christmas and keep in mind the real reason for the season. Let's not keep Christ out of Christmas! I'm enjoying our little bit of cool weather, tired of the heat. I would much rather wap up in a blanket than staying hot.

Follow up

Daniel is doing great! Its been a little over 2 weeks since surgery and things are going well. We had our follow up appointment yesterday.
Daniel's incision looks great and healing well, all 6 inches of it! Will do a longer post later.

On Our Way to Recovery

This is Daniel waiting for surgery. We were told before they took him back to the OR that they were going to try for another IV. They wanred it as back up, just in case. I wasn't to thrilled, I mean why did we have a PICC line? This delayed surgery. Daniel was wheeled back at 8:20am and we didn't get the call when they started surgery until 10am. Despite Daniel having a zillion bruises from IV pokes, everything went superb!





This is Daniel after surgery. You could already tell the difference and see the surgery was a success! Daniel was swallowing! This was a big concern before because his swallowing was so decreased he would choke often. His heart was less than before and he seemed more relaxed. What an answer to prayer, I am so thankful for everyone's thougths and prayers.




Daniel the same day of surgery at about 9pm. He only needed Tylenol for pain control and was doing great! We were able to come home the next morning. Thank you again for your kindness and caring about our family. God is awesome and we are so thankful for His many blessing on our family.

Last Friday

This attempt should be smoother now that we have a PIC line, Thank You Lord!!!

Less than 24 hours

Tomorrow is the day of surgery. Surgery is scheduled for 8am, which means we need to be there by 6:30am, UGH! This is actually not too bad, no waiting around time, first one in and it's over with. I'm ready, I know Daniel is too. His symptoms have been getting worse everyday. His is gagging, having increased difficulty with his swallowing, not sleeping well at all, very aggitated, and requiring more meds. I am praying this surgery works really well to get him feeling well again.

Michael is at Camp Doe River Gorge this week in Elizabethton, TN. It's about 11 miles from Jeff's parents house. It's a camp where kids come from all over, a few years ago there was a group from the Bahamas! It's suppoerted by local churches and a great opportunity for kids to learn about God. Michael has gone for 6 years now. We can't talk to him other than sending him one way emails. Can't wait to talk to him tomorrow, he will be picked up by Grandma and Grandpa at 11am. I miss him very much when he's gone.

I will update as soon as I can after surgery. You can find me on facebook under Michelle Mitchell Johnson. Amy, if you are on facebook I would love to be your friend on there.

Five days until surgery

Today I think I had a small sort of panic/anxiety attack. This happens once in a while. I don't like to admit my defeat when worrying takes over and I can't seem to stop. I know God is in control and I put my trust in Him fully, or do I? Sometimes my human flesh comes through too much and the emotions can be overwhelming! I really do know He is in control and no matter what we will get through what ever comes our way. But sometimes my mind won't hear of it, my heart and soul is on board, but not my mind. I believe Satan tries to distract us from the truth. The evil one tries to put blinders on my eyes and turn them away from what I know to be true. The truth is God is with me and He will see me through whatever ever trial I'm am facing. So thankful for His grace.

I'm not sure why this upcoming surgery has hit me so hard. Maybe it's because Daniel hasn't had surgery in over 2 years? It could be this is a new surgeon for us, not our doctor of 13 years working on Daniel this time. Daniel has undergone about 100 surgeries in his 13 years. You would think I'd be use to it by now. I sometimes think we have been blessed so many times, so why do we deserve another one? The fact is I don't deserve it, but that's not going to stop me from praying for it! I am going to pray that Daniel comes through this surgery and back home with us safe and sound. I'm praying he will have more comfort than before the surgery and can start to want to play and explore his surroundings just as before without so many drugs to keep him pain free. Please join me if you would to pray for the same. I will update while we are in the hospital. The surgery is Friday, July 29th at 8am. Thank you.

Going home

I can't believe our week has come to an end. We all had a great time here at www.campnewhopenc.com. I hope you will take the time to visit the website. This place is incredible and they are so giving! They rely on donations to keep the camp running. We have had a great time together as a family enjoying peace and relaxation. This was a perfect week to go because of Daniel having surgery next week. It gave us a break from our everyday routine and share precious memories. Daniel has been comfortable this week and seems to have enjoyed sitting by the river. Daniel is going into the hospital next week on Thursday. I will be sure to post and keep everyone updated while we are in the hospital.

Camp New Hope 2011

We are here at our wonderful retreat here in the beautiful mountains! Our time has been full of relaxation, tubing, sitting by the river, playing in the river, watching to dogs have fun too! Most of all we have been fed very well! Randy has got to be one of the best cooks I know! I will post more tomorrow. Thank you to everyone at Camp New Hope for all you do for families!

Feeling Hot, hot, hot!

Summer has started off with the heat turned up on high. It's been really hot, over 90 degrees most days! Needless to say we have done more indoor activities than outdoor. Daniel doesn't handle the heat at all! He doesn't sweat, which makes it impossible to cool himself down. Add his new neck brace and it causes him to heat up faster. We will be heading to the mountains in about 3 weeks to Camp New Hope. We will hopefully see lower temps there. For now, we have been doing lots of bowling. Michael and his friend have joined a summer bowling league. It has been fun to watch them.

We had our appointment with our new doctor a couple weeks ago. Our appointment lasted over an hour. I had to give this new doc 13 years of medical highlights. I had to make sure he knew certain things about Daniel's medical issues, hospital visits, surgeries(almost 100 now), medical/doctor mishaps (which have caused devastating, life altering problems), and concerns. This poor guy was probably exhausted after our appointment. Overall it went pretty well. I didn't hold back about concerns we have with the new doctor change. We talked about what would happen in an emergency. Although we haven't had one in quite awhile, with our other doctor of 14 years, we knew what to expect in an emergency. Prayers were definitely answered, this appointment went very smoothly. Jeff and I walked out of there feeling much better than expected.

Our options now are major surgery of a spinal/neck fusion, surgery to remove scar tissue and still stay in the neck collar, or do nothing and stay in the neck collar. We are deciding to do the simpler surgery to remove scar tissue when the time comes that Daniel seems to not be comforted by pain meds. The neck fusion is too scary right now, too many complication risks and recovery risk. Since Daniel was born we decided to do whatever was necessary to keep him comfortable. As long as the surgery or procedure has long term affects that leave him more comfort than without having it we proceed. This can be very difficult at times. We rely on much prayer and the knowledge of the doctors to make these decisions. We will be meeting with the doctor again next week to decide about surgery. Daniel has been requiring more medicine for comfort and having difficulty swallowing. I think we will need to do surgery before the summer is over.

I hope you are enjoying your summer so far. We are enjoying the less hectic schedule. Stay hydrated and don't forget to wear sunscreen!

It's been a long time!

Summer is here and so is the heat. Another year has gone by quickly. Michael is going to be an 11th grader next year and is learning to drive. Time passes too fast for my comfort. As I was thinking of school being out and wanting summer break to start, I thought, whoaaaa put on the brakes. Pretty soon we will be making college plans and then I'll want to aplly more brakes. Trying to enjoy the present and not fret about the future. We are hpoing to have a fun filled summer. Michael will be going to his usual Ralph Lundy Soccer Camp, Doe River Gorge Camp, and as a family we will be going to Camp New Hope. I love spending time together with my precious family!

Daniel is now 13 years old. He is wearing a neck brace full time for spinal/brain stem compression issues. We were told this past month we can no longer see our neurosurgeon of 14 years. We are being given NO explanation as to why this is happening. He is still in the practice we go to, BUT we cannot see him. I have pleaded our case as far as I could go with NO progress. We have an appointment with a new doctor on Thursday. I am NOT looking foward to this change. I may have to eat my words later, but for now I am just plain devistated.

Thankful for God's blessing on our family in the last several months. We have truly seen His hands at work through some rough patches. We have gone through changes with our at home help with Daniel, but now it has worked out wonderfully!!! Thank you Lord for watching over us!!! Have a great summer, I know we are!