Hold 'em Close!

Happy Mother's Day to all the Moms out there. We often take for granted what an impact our Moms have on who we turn out to be. I know that my Mom struggled a great deal to make ends meet as a young divorced mother, but what I remember most was that she was always there for me and always had my back. I encourage each of you to reach out to your Mom if she is still with us and let her know just how special she is and how much you love her. Give her a big hug if you can and spend some time with her. You never know what tomorrow will bring, so why wait? If she has already passed on to God's side, say a little prayer for her and be sure to thank her for all the hard work she did in making you the man or woman you are today and for all the wonderful memories you shared together.

Happy Mother's Day Mom! I know you read the blog and I wanted everyone that reads it to know just how much I love you and thanx as always for being there when I have a tough day. To Judi's Mom who left us way too early in life, I know you are watching over her from heaven and I thank you so much for making her the woman she is today. Those of you that knew Judi's Mom (Shirley) also know Judi is just like her. Both are wonderful women.

Steve

Two Years Have Come and Gone

April 26 marked the end of the second year since Judi's accident and it was difficult for me to believe that we had just got Judi's skull repaired. When we started this journey, I would never in a million years have thought we would still be going through brain surgeries two years later. In some ways, it seems like yesterday when our world came crashing down and life took on a very different meaning to us. In other ways, it seems like our previous life is a very distant past and life as we know it today is normal for us. I guess that's how we adapt to these types of situations if you are going to survive them. Or said in my terms, you can let this thing slowly destroy you and live in the past and the "Why us??" mode, or you can suck it up, move on and live life the best you can.

I will admit that I am still in the middle of the two. I had clearly started to transition to the "move on" mode last summer before we had to go back for the surgery to remove Judi's bone flap. She was doing well and the future was starting to firm up a bit for us. As I watched her steadily lose ground after the surgery, I had to fight to "stay in the middle" again. As I watch her today, I keep looking for that spark that she clearly had during the summer, but it has not surfaced yet. I don't talk about Judi's specific condition a lot because it often confuses folks that have not been exposed to this type of situation. Just so everyone will have an idea of where we are today, Judi was more responsive and capable of performing tasks when I brought her home from Walton Rehab Hospital for the first time in Sept, 2009 than she is today. I know that is tough to hear, so I am sure you understand how tough it is for me to say. HOWEVER, I do believe Judi has the capacity to do it again and make a significant recovery well beyond where she has already been. The reality is, she is going to have to make up her mind to do it before she is going to start getting better. So far, she has not made that commitment and my focus has been to try and get her motivated in that direction. It is difficult to know what tools to use to get her going though since she really doesn't provide any feedback on whether it is having a positive or negative impact. She has an appointment with her Rehab Doctor next week and my mission is to try and get him to put her back in outpatient rehab. I think that will do her a tremendous amount of good physically and the social interaction with others that are working through similar issues may be the catalyst to get her going again. Judi is pretty competitive by nature and has never been afraid to step up to a challenge in the past. I suspect it is going to be difficult to get her back in unless she interacts some with him during the appointment. As you recall, she was discharged in the fall due to a lack of participation. keep your fingers crossed and pray that Judi steps up.

On a different note. Judi's hair is growing in well. The incision is healed and there are no issues there. We went to a an appointment with her GYN doctor and all was well. I can assure you that was a unique experience for me. I was the only man in a room of women and felt like an "onion in a tulip patch." They were awesome to us though and I could not have asked for better care for Judi. I have a new respect for women though. There is nothing fun about the mammogram process and it made me hurt just watching. Saving the ta-ta's comes with a price. We have also restarted her NF therapy and she seems to be tolerating that well.

I know the post has been a bit gloomy, but several folks have asked me over the last couple days how Judi was doing and I felt like I needed to be candid with those that care for her. DO NOT read into this anywhere that I am giving up on her. I will keep at it as long as God gives me the strength or she tells me to leave her alone. Keep praying for us. Jess and I are doing our best to support one another as well as Judi, but we are both getting a little worn down. Stop by and see her if you can. She does like visits and if you catch her on a good day, it will warm your heart a bit. I will try and include some pictures of Judi with the next post. Now that she is back to normal, I don't think she would mind having her mugshot on the air waves.

Thanx as always for your support and prayers,
Steve

Good To Go

We had Judi's first follow up appointment on Monday and all was well. She got all the stitches out (she was happy about that since they had started to itch). The incision has closed nicely and is almost completely healed. There is no indication of infection internally or with the incision so hopefully we have that behind us. That was probably the biggest risk post surgery. Judi's brain is still pushed towards the back of her head on the right side and will probably take several months to move back into it's normal position. There is an air pocket still in her skull where the new prosthesis was installed and it has not filled with fluid. This could take a very long time to be eliminated for Judi due to the shunt that she has. To keep it simple, without the shunt, the fluid would build up in Judi's skull and compress the air bubble which would ultimately cause it to be absorbed by her body and go away. The shunt creates a pressure relief device and as the air bubble compresses, the pressure inside her skull increases as well which causes the shunt to open and relieve the fluid to her abdominal cavity. We will just have to wait and see if the fluid is able to reach adequate pressure for the air to absorb or not. The problem with the air bubble is that it does not provide the same shock absorber type effect as the fluid does and makes Judi more susceptible to further injury from even minor bumps of her head.

We DO NOT want to do anything with the shunt unless things really turn bad for her. The main reason being the infection risk every time we go into her head. If she got an infection, the prosthesis would have to come out and we would have to start the whole process all over again. There is a good chance that her brain will not return to the "normal" position and we have decided that unless she really has a huge cognitive loss that the risk is not worth the minimal gains that might be realized. So, putting it in my words, unless something really goes bad, we are done with surgery and will focus on what God gives us to work with in the future.

We have a lot of issues to deal with as we get her back up to speed, but I am confident that we will be able to work through them in the long haul. I keep telling myself that God didn't bring us this far to leave her in her current state. I would appreciate it if those of you that see me often remind me of that if you see I am struggling To stay positive. I will admit that I have struggled a bit of late and much of it is because I am just plain tired. With Judi not eating, I am having to feed her through her feeding tube to ensure she is getting the appropriate nutrition which means I am up at night feeding her since she can only take so much at a time. She has also started vocalizing A LOT at night and I am always waiting to hear that first word so that I can encourage her and obviously want to know what she is trying to say.

We have been spoiled a bit lately by some very good cooks. Many thanx to Angela Macintosh and Rebecca Cantrell for the awesome vittles. Jessica says you have an open invitation to come live with us! I also wanted to thank all of you that wished Judi a Happy Birthday on 4/15. I read all of your messages to her and i could tell she enjoyed hearing from you. Feel free to stop by and see her if you get the chance. I still believe it will be one of those visits that finally snaps Judi back to us.

I hope all of you have a Happy Easter and don't forget what the day is really for. If you are so inclined, say a little prayer for Judi's continued recovery.

Steve

Home Again

I was able to bust Judi out of the hospital today and both of us were glad to be back home. It is great to see my girl with a "round head" again and you can tell she already feels better. We will go back in a couple of weeks to have a follow up CT scan and check the incision to ensure it is healing well. The prosthesis was a perfect fit for her and there is very little swelling. Judi did have a series of three seizures during the day of surgery (none of them severe). The Drs were not overly concerned due to level of activity she had been exposed to and the severity. There was actually some discussion that it may be a positive sign that her brain activity had increased, but in the end, no one knows for sure.

The plan now is to let her heal for a couple of weeks and then hopefully get her back into outpatient rehab. I am hopeful that she will gain ground quickly and get back to where she was before we had to remove the bone flap this summer. Whether quick or slow, as long as she continues to gain ground it will be a huge success.

I'm going to keep this one short since I am just about out of gas for the day. Although this was a short stay, neither of us seemed to get any rest. I'll update as changes occur and thanx from the bottom of my heart for all of the prayers.

Steve

Surgery Update

Hi all - Jessica here. I just spoke to Dad who has asked me to do a quick update. Mom's surgery was uneventful and she is already out of recovery. Everything went well and she is already awake, laughing at Dad. (I'm guessing he does not look fashionable in a gown or gloves.)

Thanks for all your prayers and just keep Mom close to your hearts.

O Dark Thirty!

A quick note to remind everyone to say a special prayer for Judi tonight and tomorrow. Her surgery is scheduled for 0730 and I have to have her at the hospital by 0515!!!!

The length of surgery is dependent on how much the skin has attached itself to the dura layer encasing her brain. It has to be carefully separated so that the prosthesis can be slipped into place. It is a meticulus process and if done improperly could result in a bleed or other damage. If all goes well, she will be home Wednesday. I'll have my computer with me tomorrow and will do a quick blog update as soon as she is out and settled in.

Pray hard that this is the last one and that Judi will be on a fast track back to us.

Steve

The Date is Set

Judi's surgery is scheduled for Tuesday, April 5th. We will do her pre-op tests/paper work on Monday and then bring her in the morning of surgery. I did have to take her back again last week for another CT scan. It appears that she moved a little at one point and the CT technician did not see it. The company that is building her prosthesis was concerned that they may not have the best possible fit without having another scan. I obviously said we need to do it again. We definitely don't want to be in the middle of surgery trying to make it fit. The surgery date was driven by the amount of time needed to get the prosthesis built and in the hands of the surgeons. It is a polymer type material as opposed to some type of metal. This will allow them to shape it a little if needed and will not impact the viability of any scans down the road.

We are currently scheduled for the first session. I have learned a bit about how the schedules seem to go at MCG and this slot was one that rarely seemed to get bumped for a higher priority case. This is Master's Week and I was a little concerned initially when they asked me about this date. I wanted to make sure that the team doing the surgery wouldn't be thinking more about being on the golf course than what was going on with Judi. As it turns out, none of the Drs doing her case are golfers and they preferred to be able to work that week since the operating room (OR) schedule was light. Assuming all goes well, she will be there a couple of days and then come home to recover. I don't want to spend one minute more than we have to in the hospital. Neither of us get any rest while she is there and it's obvious she does recover faster (better) at home.

I am glad we were able to do the surgery right away since Judi really seems to be losing ground lately. I am hoping it is a bit of apprehension about the pending surgery. It is also possible that Judi remembers the loss of one of her closest friends during a very similar surgery. Judi was devastated by the loss of Jill and was still learning to cope with it when she had her accident. It is also possible that Judi is thinking of her Mom. I tell Judi every day what the date is and it is very possible she remembered the anniversary date of her Mom's passing. It was 20 years ago on March 18 when we lost an awesome lady to cancer. Judi and her Mom were very close and it is one of the things that drove Judi's desire to work in the Oncology field.

Regardless of the cause, we are going to beat it! Once Judi gets healed up from this surgery, I am going to try and get her away to the beach for a few days. We need to try and get our lives back on a normal (as much as we can in this situation) track. I would have to say that the three of us have just been "existing" since the accident. I can hardly believe the accident was almost two years ago and we are just about to a point where she is in a stable physical condition. I know in my heart that she is going to excel mentally if I can finally get all the physical issues behind us. Judi just needs a little momentum in the positive direction to build upon. I dread the thought of another surgery, but I pray it's the last one. Each of them seem to drain a little life out of me. It will be a tough several months as we wait and see if the shunt will have to be changed out. Once we have that behind us, we will be able to focus on the future and what that has in store for us.

I have talked to a lot of people lately about doing whatever it takes to give Judi a chance to come back. Many of you know that all three of us love music in practically every form. I was stunned by a song that Rascall Flatts recently released call "I Won't Let Go." I was stunned because every word in that song described how I feel about both my girls, but especially for Judi in her current state. I could have written that song. I have said every word in that song to Judi over the last couple of years and it just brought all of it together for me after all this time. I cannot listen to it without tears coming to my eyes, but it always makes me take a deep breath at the end and find the resolve to keep going. I have attached a clip where they performed it on a show. I encourage all of you to give it a listen, especially if you are facing your own challenges. I continue to thank all of you for your prayers and ask that you mark your calenders for April the 5th and make a special little prayer for Judi that day.

Steve