Well, I've done it again ... I've left you hanging and probably wondering "what's going on with johnny". Let's see, since SEPTEMBER, Mom and Johnny have moved back to Navarro Mills. The house in Navarro mills hadn't sold yet and with Johnny's rising medical expenses, it only made sense for her to move back where she had no house payment and rent out the midlothian house. It is actually for sale is anyone is interested. That was a move that was really hard on me because I really enjoyed having my family so close. Jackie did not want to move again, she was established in high school and had many friends she didn't want to leave behind ... After much prayer it was decided she would live with Mickey and I for good!! No more moving for Miss Jackie. It was hard for her to choose living apart from her daddy but this is truly what he would want for her ... We believe anyway. We see Johnny often. It's so sweet how he lights up when he sees her. Johnny changed almost immediately, living in the country is where he has always thought of as home. Of course there wasn't much to do on the inside because the house was already set up for Johnny. We just needed to move their stuff back in. This adventure was much like a gigantic spring cleaning!! It's amazing how well you can function on much less!! I'm reading a book by Jen Hatmaker called "7 an experimental mutiny against access", it's very inspiring! If you get the chance you should check it out. Actually all her books are great!! Once mom got all settled in she and Johnny hit the yard. Everything was dying! I don't have to remind my fellow Texans how hot and brutal the summer of 2011 was! My family like many I'm sure are suffering now with the allergies the mild winter has brought. I digress ... Anyway, her yard is magnificent!! You should plan a trip to visit Johnny just to see what she's done with the place!! Mom turned the big barn into a ministry to reach out to families who have been devastated by fire, job loss, anything really. She started taking in donations and now the barn is full. She's calling it Joyful Hearts Ministry. That is such a great description of my mother. She has had so many terrible things happen to her in her life and yet she faces each day with a joyful heart and a love for God. What a legacy she is cultivating for those that love her! Johnny continues to live a happy life. He has therapists that come to the house but we all know his true therapist is our mother! Her dedication to Johnny knows no bounds! Another plus of moving is Dad and Diana are right up the road ... 15 minutes away. They spend Wednesday and usually Saturday or Sunday regularly and most weeks more then that with Johnny. They come get him on the weekend and Johnny gets a change of scenery when they take him to their house. Christmas was really nice this year, we took Johnny with us over to Dad and Diana's and he watched his nieces and nephews open gifts. Loud noises bother Johnny so after a while we had to take him home because he became agitated. It's hard to shoosh kids at Christmas! Christmas eve Jackie spent the night with her daddy. Santa did not disappoint and he always knows where to find us, huh! Johnny seemed to have a really great day! Johnny got a remote control car that can be operated with one finger ... Perfect for him! He was driving that car all over the living room and laughing! So sweet! 2012 came as promised and with it much therapy for Johnny. Also, a lot of insurance headache for mom. Cobra insurance for johnny ran out and Medicare began. Medicare has a whole set of rules and is very confusing. My mom is excellent in sorting through all that and is constantly finding out new things. There really should be an easier way to understand what's going on with your health plan. When you start a new job you have an orientation. Shouldn't there be one to understand the benefits of your health plan. I'm constantly thanking God for putting my mom in charge because I would be lost! Mom was informed recently that therapy on Johnny would end soon ... I can't explain how angry all the red tape makes me! To these people Johnny is just a name on a piece of paper. Come meet him, see his progress, look at the pictures of who he was, talk to his family, meet his daughter. Don't give up on him!!! Luckily my mom uses each therapy session as a learning session and she does most of Johnny's therapy herself. I'm worried about her though, there's going to come a day when she just can't anymore. It's easy to write in this blog and make everything sound great and happy and that life goes on but reality is ... Johnny's accident has been devastating for his family! It's hard every day! A good day for me ends with feeling very guilty that I'm going on with my life and my brother is stuck in a wheelchair unable to perform his own basic needs! The truth is Johnny is unaware ... His brain injury makes it where he doesn't know what he's missing, his family is left to mourn that for him because he doesn't have that feeling. I read his facebook and I know how many of you care for him and write him messages but the truth is he probably doesn't remember you. I'm not sure he remembers me or that I'm just someone that is familiar to him because I'm always around. Oh gosh, I'm doing it again, feeling sorry for myself. I miss my little brother. I miss him! I miss our talks. I just miss him! Of course he knows me! It's just unfair! It's been almost three years since his accident and it feels like yesterday. I wonder sometimes if I'm not praying enough. I know God has a plan. I know he has a reason that this all had to happen. He had a reason that Jackie had to have this hard life. That my mom had to take on the role of care giver. That my baby will never know how funny his uncle is. That my Dad won't be able to go fishing with his son. I know there's a reason ... I just don't know what that reason is. How incredibly hard it must have been for Mary to watch what was happening to Jesus ... Did she have resentment? How could she not? I think of my own boys ... I don't think I could have watched and not stepped in. Mickey is constantly comparing me to a momma lion protecting her babies. Pray for my parents ... Johnny is unaware, but they are not. My parents hurt everyday for Johnny, for his future. I know that God can heal Johnny. If not in this life ... He will walk again. Forgive the ramblings of a heartbroken sister. Love you Johnny, Jen

From then until now ...

Johnny, After you moved back home, it took a while to get into a routine. Maybe it was because you didn't have therapists coming to the house or maybe because it was summer. Slowly a routine started to emerge based around doctor appointments, ortho for Jackie and various other activities. After you were home a couple of months, mom got with your medical doctor and went over your medication list. Together they were able to eliminate several meds. On may 25th, Jackie turned 14!!! Johnny, she has changed so much. She's turning into a lady right before our eyes! In July you started outpatient speech therapy. You failed the dysphasia gram again because you don't like the taste of the barium and refused to swallow it! You'd think that they, the therapists, could come up with something else to test with. It's crazy for them to think that something is right for everyone! It's definitely not one size fits all with you Johnny! Well, mom couldn't see the therapist was doing anything for you that she couldn't do at home so you stopped going. We felt like the therapist was wasting what little outpatient benefits you had! Well, you pulled your trach out again! It took mom a while but she got it back in, wishing she had three hands! You thought it was funny and laughed at her for next hour! A few weeks later your lung doctor told mom to pull out the trach, he said you didn't need it! As I type this update, you are in the process of settling into your new live in rehab. I don't know for how long you'll be there or what the outcome will be. My prayer is that you can walk out of that place and come back home. Nothing is too big for God! Love you Johnny!! Xo Jen

Guess who's home...

Johnny,

Well it's been a long journey but you made it back home! Welcome home little brother!! You were so happy to be in your own bed today. It was good to see you happy. Mom made your room as homey as she could. She hung pictures of Jackie and the quilt granny made you. Your hockey sticks are there too. You seemed really tired after mom got you into bed and all hooked up to your oxygen and trach stuff. You were asleep by 8:00 pm. I have to tell you something funny that happened while you were sleeping ... Mickey brought home some Chinese food and after we had eaten and were cleaning up, Mickey said, " my fortune cookie tasted funny and then I realized I ate my fortune". I was in mid gulp when he said that and I spit my water all over mom's kitchen floor! I can only imagine what you would have said to him ... Ha! It's such a blessing to have you home Johnny!

For Johnny's friends that might not know, our mom has moved to midlothian. That's where you can visit Johnny. If you'd like to visit, I'd encourage you to call first and make sure johnny's not at a doctor's appointment. We would really love for Johnny to have visitors, come and stay a few minutes or all day. If you can't visit, feel free to write Johnny an email, snail mail, or post a comment on the blog. I'll be creating a Facebook page for Johnny soon and when I do, I'll post it on the blog so if you'd like to friend him, you can.

Johnny's new address: 740 High Point - Midlothian, Tx 76065
Nancy's cell: 972-345-0454
Jennifer's cell: 972-921-4335
Jennifer's email ... You can send Johnny an email here if you'd like to: jensmith769@yahoo.com

Thank you for continuing to pray for Johnny! We appreciate each and every one!!

Xo. Jen

Johnny,

You are doing so good! You got your trach in and that went well! The doctor suctioned your lungs and got a lot of stuff out that you couldn't cough up. Right now you are being given oxygen through your trach until you are strong enough to breath completely on your own. Last time I saw you I walked into your room and said hi Johnny! You stuck your tongue out at me. Jackie was with me and we both laughed out loud and you smiled. We had a great visit! Thank you everyone for praying for Johnny, we appreciate every single one!

Love you! XO Jen

Please pray for Johnny, he is having surgery in the morning to have the trach put in. Pray for a speedy recovery. Pray that the Lord guides the doctors hands. Pray for a good nights sleep tonight for both Johnny and his surgeon. Thank you for your dedication and prayer! Jen

Update

Mom confronted the case manager and told her everything that we've been dealing with concerning the nurses and techs. She also told her that she wanted you out of that place as soon as possible. It's the families belief that if Diana hadn't been there last night you would have died. It was and is that serious! Mom has a call into the dr that will be putting in the trachea to see about getting you admitted asap. We don't feel like it will be a problem. Keep praying, johnny's not out of the woods yet. Thanks! Jen

We are in need of prayers!!

Johnny is not doing good at all! Mickey and I took Ty to see his uncle Johnny today and when we got there we were told that it wasn't a good idea having the baby there so Mickey waited while I visited and then we left. Johnny was sleeping and usually I can wake him up just by saying his name but today that didn't work. I shook him, patted his chest, raised his eye lids ... Nothing worked. I asked the nurse if he had been given anything for sleep and she said yes that he was given something for pain. I didnt think anything about it ... I said my goodbyes and left. Dad and Diana visited after we had left and Diana has medical experience, she noticed his co2 level was real high ... This means that he's not breathing deep enough to remove the carbon dioxide again. The scary thing is that Diana had to tell the nurse that she needed to check that. The doctor was called and he ordered Johnny to be put back on the ventilator. They suctioned a lot of yellowish junk from his throat. He's too weak to cough it out himself. We fear the pneumonia could be back. It looks like Johnny getting a trachea is not a matter of if but a matter of when. I saw Johnny today ... He looked worse than I've seen him in a while. I really feel like if Diana hadn't shown up when she did and took charge, Johnny would not make it through the night. He really needs your prayers. Giving a patient who just came off a ventilator and is working on increasing oxygen level a sedative or any type of drug that relaxes is not good. He was so relaxed that he wasn't producing enough oxygen to be woken up when I shook him. He could have eventually just stopped breathing. Pray that Johnny can find the strength to fight. Pray that he overcomes this round of illness. Pray for wisdom for the doctors and nurses who are taking care of my brother. Pray for peace in the decisions that my parents have to make regarding my brothers care. Pray for Jackie, it's so hard for her to see her daddy this way and watch him on the roller coaster he's been on for nearly two years now. Pray that God's will be done ... It's hard to even attempt to understand! I miss my brother! Thank you for being so dedicated to Johnny. Jen