While You Were Sleeping ...

From then until now ...

2011-09-27T12:15:00.001-05:00

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...

2011-04-27T21:41:00.003-05:00

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

2011-03-22T17:44:00.002-05:00

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

2011-03-09T21:47:00.002-06:00

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

2011-03-07T14:52:00.002-06:00

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!!

2011-03-06T23:28:00.002-06:00

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

One giant leap forward!!

2011-03-02T13:15:00.004-06:00

Johnny,

I feel like we're all playing the game of Johnny and you're making up the rules as we go along!

You did excellent on your blood gas test last night and this morning and as I type this you are having the ventilator tube removed from your throat. You will have the little tube thing that goes in your nose but it will not go into your nose, just rest there. I'm sure you will be more comfortable soon! Next hurdle is to decide where to send you for therapy ... Once your able to leave the hospital. I'm not sure if I posted this but your pneumonia is better and your off the antibiotics.

Praise God for answered prayers and thank you to all Johnny's prayer angels for praying so faithfully!

Love you! XO Jen

One step forward ... Two steps back!!

2011-03-01T20:09:00.004-06:00

Johnny,

Last week you were transferred from the hospitals ICU to a LTAC (long term acute care facility). The week felt pretty grim! You still had/have the tube in your throat helping you breath. On Sunday we were told that you've been on the ventilator too long and that it's starting to damage the inside of your throat and mouth. The doctor said that the best thing for you is to have the trach put back in. This is something we absolutely did not want! Our fear being that if you have one again you won't be able to have it removed. Mom was told that we were given false information before and that it is possible to be weaned of the trach again. He also told her that it would be worse for Johnny having the ventilator any longer because of the tissue breakdown. So, you've been scheduled for a trach on Thursday.

Resent update: you were given a blood gas test today ... and you PASSED!!! A blood gas test is a test to see if the ventilator can be removed. Removing the ventilator means you will have to be able to breathe deep enough to remove the carbon dioxide from your lungs. This is really good news! If your able to breathe without the ventilator, you won't need the trach!! So, the doctor asked mom if she wanted to have the ventilator tube removed and mom said that she wanted another blood gas done first. You see, if you have the tube removed and then start breathing poorly, you'll have to have the tube again and then the trach ... Steps back! It's better to be safe and know for sure. So, you have time to study for your next test ... Ha! I know you'll do good because God answers prayers! Which leads me to my next subject ... God's will ... I've been having some trouble with knowing what exactly to pray for when I pray for you. I talked to a good friend about this and she told me that God already knows what we are wanting to pray about, even we don't . She left me a note in my mailbox this morning and I'd like to share it with you and those out there that are having some of the same troubles as me.

Romans 8:26
And the holy spirit helps us in our weakness. For example, we don't know what God wants us to pray for but the holy spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the spirit is saying, for the spirit pleads for us believers in harmony with God's own will.

Our pastor said on Sunday:
The spirit of God searches every inch of our lives - He intercedes in prayer for us. He knows stuff about us that we don't even know!

There is comfort in knowing that when I can't find the words to express what I want or need, it's okay because God already knows!

Praying for you! Looking forward to some excellent test scores! XO Jen

2011-02-18T21:27:00.002-06:00

Johnny,

You are hurting your momma's heart! Mom called me today very upset ... You have been admitted to ICU again and they intubated you again. You've also been given sedation to help you tolerate the tubes. Your oxygen level is low and again you are not exhaling enough to release the carbon dioxide. Because of your lengthy stay in the hospital, you will more than likely not return to your rehab home. We are looking into having you moved to an acute care hospital, one that you'll have access to a pulmonary doctor. You are being given two different antibiotics to fight the pneumonia. Your family is very worried about you Johnny, you are one sick man! Praying for you to get better! Love you so much! Xo. Jen

P.s. I remembered something the doctor told mom ... I thought it was encouraging ... He told her this is just a bump in the road.

One more thing ... I saw a quote on anneliese's Facebook page that I thought was really funny. It made me think of you and your johnnyisms. It said: don't argue with an idiot, they will only bring you down to their level and beat you with experience. Ha!

Love you!

2011-02-15T10:06:00.001-06:00

No X-Ray needed for the feeding tube, they were able to unblock the tube by sticking a wire in the tube. You are still in the ICU because a room isn't available still. Hopefully you can go from ICU back to rehab. Again, progress. Love you! Jen

2011-02-15T08:16:00.002-06:00

Johnny,

You were scheduled to move from ICU into a regular room today but there isn't one available so you are still in ICU while we wait for one. Right now the problem seems to be in your peg tube ... Your feeding tube. It seems to be clogged and the nurses are having no luck flushing it out. You are going to have an X-Ray today to see what the problem is and they may decide to replace it with a new one. You had that done not too long ago and it's a simple procedure. The doctor switched your antibiotic to a different one that can be given to you in pill form. This means that the nurses dilute it in water and give it to you through your feeding tube. I'm guessing you still have the central line in your arm since they aren't able to give you your meds through your feeding tube right now. All in all, I'd consider this progress! Love you little brother and I'm praying for you!

XO Jen

Another update

2011-02-14T10:09:00.002-06:00

Johnny finally got the tube out of his throat on Saturday. Dad said he was coughing a lot ... That's good, clear those lungs!! Johnny still has the central line in his arm ... This is for medication. He will probably be discharged on Tuesday. The newest problem is that he has to be approved by insurance to go back. Cross fingers that he's approved!

Thanks for the prayers, Johnny and his family appreciate them! Jen

Update on Johnny's hospital visit...

2011-02-10T14:02:00.003-06:00

Well, I'd like to say that everything is improved with johnny but the truth is, there's been no change. He's still in ICU and he is still intubated. The nurses did turn down the oxygen where he would be breathing his own but after 6 hours of that, they turned the oxygen back up. Johnny's sedation wore off and he was aware of the tubes in his mouth and nose and tolerated it for a while but the nurses started giving him that a little bit more too because he became agitated. He's had a few more CT scans ... One as recent as this morning but we've not been given the results yet. Please continue to pray for Johnny! Thanks! Jen

Prayer request for Johnny

2011-02-08T10:52:00.003-06:00

Johnny was taken to the emergency room last night around midnight. He had an elevated blood pressure and a low oxygen level. Johnny was given a CT of his chest and it showed he has pneumonia in both lungs. Johnny has been intubated with a tube that goes into his lungs and inserts oxygen. Because he has pneumonia in both lungs, he's not breathing in deep enough and exhaling enough to remove the carbon dioxide from his lungs. The doctor said that Johnny is breathing on his own but the extra oxygen is helping. Johnny has also been sedated so he can rest more comfortably and to help with the gag reflex. There is also a tube in Johnny's nose to drain the blood off his stomach ... produced by the intubation. The doctor plans to ween Johnny off the oxygen sometime tomorrow. Please pray that this happens. It took so long to have his trach removed and our fear is that if he has another one, the build up of scar tissue will make it's removal difficult and possibly not possible. As I type this, I'm sitting in his ICU room waiting while they take him for another CT scan. It is really hard to see him hooked up to all the blue tubes again. It takes me back to parkland when he was in a coma fighting for his life. The other patients in this ICU unit are gray haired and have similar tubes and things ... Beeping machines and worried family members. I can't help but think how unfair it is that Johnny's got so much color left in his hair ... meaning he's too young for this! I also hate how familiar I've become with hospitals. I want to scream enough! Johnny's back from his CT scan ... I asked if he smiled for his picture ... they said he did ... you have to keep a sense of humor! The nurse got Johnny all situated and turned in his bed. They rotate to prevent skin breakdown and bedsores. Any movement like that can cause his tube to irritate and makes him cough. Watching you cough Johnny was just like before ... No sound but violent shaking. All I could do was stand and cry for you. My heart aches for this to be over for you! It's all just too much and unfair and hard to watch! I love you Johnny and would love to take this pain away for you! Best I can do Is pray and I'm doing that!

Love you!! XO Jen

January 21, 2011

2011-01-20T16:27:00.003-06:00

Your smiling while you tickle Ty ... I love this picture : )

I asked you what you call me and you typed this.

Showing your therapist how you work with magnetic letters. She was impressed!

This is a retired therapy dog. We saw him at the Mckinney Christmas on the square. You're petting him. I think the dog is telling you to get that stupid hat off him.

You were listening to some very loud music and enjoying every minute of it.

The picture doesn't show it but you were tapping your thumb to the beat.

Reindeers. Pretty cool!

You're making a donation to the Salvation Army.

Jackie pretending to let you go ... mom said your brakes were on ... what do you think?

The animals on your residence.

Resting in the shade.

Jackie ... hmmm, I don't know ... being Jackie : )

Christmas morning ... Jackie's asleep in your bed.

Newest member of the family ... Danny. Izzy is saying hello.

January 8, 2011

2011-01-08T22:50:00.002-06:00

Johnny,

Can you believe it? It's 2011!! Happy new year! I'm so looking forward to an amazing year, good things are going to happen!

I'd like to say that Christmas was uneventful for you but we both know that's not the case. You spent Christmas eve in the emergency room...you were sweating profusely but not running a temperature and you were groaning. The doctors had a ct scan done and found pnemonia in the lower part of one of your lungs. You were able to go back to your residence with some heavy duty antibiotics. Mom and Jackie spent the day with you, I spent the day at home with a sick baby waiting by the phone and dad and Diana did too. The weather was so terrible Christmas eve! Mom and Jackie spent the night in the apartment provided for family and Santa visited Jackie there. Then Christmas morning, mom and Jackie spent the morning with you and then dad and Diana spent the afternoon with you. You were not very pleasant company, you were feeling pretty terrible!!

Your nephew is growing up so fast! He turned 6 months right after Christmas and rang in the new year by crawling! It was so exciting! He is trying to pull up on everything and keeps a permanent red mark on his forehead where he face plants about a 100 times a day! I'm assuming you figured out by now which nephew I'm talking about...19 years with just one child, I'm used to talking about a single child ... Ha!

Cody is doing really good. We got him enrolled in another full load this semester. He looks and acts so much like you. I call him Johnny all the time. I guess that's a sign of old age ... Mom calls me Jackie and Jackie Jennifer all the time. Jackie and I have gotten to where we just answer her ... Whatever she calls us.

The other day I was on way to see you and I was driving through Dallas. I saw some homeless people on the side of the road with signs asking for money. It made me mad. I thought if my brother was able he would be out there working his butt off for everything he's got, wants or needs. I thought he would never be asking for hand outs. Well, then I was quickly ashamed of myself for judging ... Everyone has a story to tell and I'm certainly not the person to be judging. I just want my brother back and those low moments hit at the craziest times. When I finally got to your place, it was so wonderful to see you. You were clean shaven and your hair was soft like you just had it washed. You smelled good and seemed like you felt good. At one point you got cramps in you leg and you stiffened up ... You started saying my name over and over. It sounded like enifer, enifer, enifer.... I was in a panic and overjoyed all at the same time. I was rubbing your legs like crazy and beaming because you were saying my name. When you went to physical therapy, you were in a really good mood. Christy had two techs working on a leg each. She said she would be right back, she had to go to the ladies room. I leaned over and said, Johnny, when christy comes back ask her ... No. One or no. Two. You laughed out loud. The techs asked if we were making fun of them. And we both laughed again. When christy came back you were saying something to her but she couldn't understand you ... We know what you wanted to know, don't we! Ha!

I have a good friend who's dad is sick and was put in the hospital. The doctors said that he would need a stent put in his pancreas. They have him on antibiotics. They were giving the pancreas time to simmer down before they did the procedure. She told me that the day they were going to do the surgery for the stent the doctors said that he didn't need it. Praise god! That's what I told her! She said exactly. She said why is it that we pray to god for something to happen and when it does we question it. Are the doctors sure ... Did they miss something ... How can that be, that he would need it and now he doesn't. God answers prayers people! We shouldn't be surprised whe we pray to him and he hears us. Instead of being surprised, we need to expect his miracles and thank him and praise him for our answered prayers! After all, he is the master physician! The maker of all things! He has a plan! So, instead of being surprised, I'm saying ... My turn ... I'm ready for my miracle Lord ... Work your miracles on my brother Lord ... Let Johnny be a testimony to your miraculous works! Heal him as only you can Lord, I know you can, I want you to, I expect you to, I know you will. You have an awesome plan for Johnny Lord and we are ready! Shine your light on my brother Lord!

Johnny, you are on my mind constantly. I pray for you all the time. I have faith and I trust that the Lord will pull our family up out of this pit. Hang in there little brother, your miracle is coming! Love you so much and I won't stop believing in you!

Xo! Jen

December 12, 2010

2010-12-12T21:50:00.004-06:00

Johnny,

It was really good to see you Saturday! Cody, Katie, Ty and I came to see you Saturday and when we got there you were having a shower. We were told that you were going to see a movie at the theater and then later that night you were going to look at Christmas lights. The group hadn't decided what to see by the time we left ... I hope you had a good time. I'm sure you did.

You seemed so mad at me this visit and I left feeling terrible. Mom said that when she visits you, you ask her every time when can you come home. Or you tell her you want to go home. You wouldn't even communicate with me. You kept your lips together tightly like i've seen you do a hundred times before your accident when you were mad. You were sweet to Ty, you kissed him and rubbed his feet but you didn't want to talk to me or cody. I wish that you could come home! It breaks my heart to leave you after a visit but i feel like this is the best place for you to progress. If you come home now, you may never be better than you are, but, if you stay and work hard your chance for recovery is so much greater! I know it's a sacrifice! I pray for you everyday Johnny! I know what God can do and I know it's on his time. I will never stop believing that you will come back to your daughter and your friends and family who love you so much!

See you soon little brother, I love you!! XO Jen

November 30, 2010

2010-11-30T17:26:00.004-06:00

Johnny,

Well, I have to apologize for not blogging more often. It might come as a surprise to you, but, I'm not super woman ... Ha! Having a baby at 40 is kicking my butt! I bet you are laughing at that! You seem to really love having a baby nephew, you just pet on him and kiss him. Ty loves you too, he smiles at you and thinks your funny. You seem to light up when you're around Ty.

It's been several weeks since you moved to your live in facility. You are fitting in just great. You have therapy from 9am to 3:30pm Monday thru Friday. I come on Thursday to see you and help with your therapy. Mom comes on Tuesdays by herself and on Saturdays with Jackie. Dad and Diana come on Sundays. Those days are scheduled so you have a familiar face through out the week but, we come other days too. Your therapy is going super, you are amazing! You answer questions correctly, you work puzzles and word problems, you are working on the computer with the mouse and the arrow keys. One of the most exciting hurdles you've accomplished is the removal of your trachea. The wound didn't fully heal and you had to have surgery to completely close the hole but it looks really good and you were a champ through all of it, of course. You are starting to attempt to talk more but you are not eating through the mouth yet. I say yet because I feel positive you will be one day soon.

I have pictures to put on the blog and will soon ... I finally realized that I can update without having the pictures and add pictures later. Since having the baby, I seem to have misplaced my brain!

Love you so much Johnny!! Xo Jen

Year 1 Week 19 : Oct 19 - 25

2010-08-15T16:39:00.004-05:00

The blog will be updated soon ...

If you are wanting to visit Johnny, email mom at nancykworley@yahoo.com for directions.

Way to go TEXAS RANGERS!!!! Awesome job!

Love you Johnny!! Xo. Jen

Year 1 Week 18 : Oct 12 - 18

2010-08-15T16:39:00.003-05:00

Johnny,

It's been a long time since I've posted something to your blog. I'd like to say it's because nothing new has happened but that's not the case, is it! It's true that God never gives more than we can handle and He knows what we can handle. I recommend not asking him what else can happen because it's been my experience that He will let you know! Well, you have been doing super! We are still so proud and amazed by your progress. You are one of the toughest, strongest people I know and I'm so proud to be your big sister! I use big as a term of older not larger although in our case, both are true! Ha!

You've heard the term when one door closes another door opens. Well, your at home therapy has come to an end. Insurance ... need I say more. But, you have a wonderful opportunity to participate in a live in rehab center. You will be getting 6 hours of therapy geared toward your specific needs. They are going to work hard on your speech and swallowing which means that you will be able to get the feeding tube removed ... as soon as you master the swallowing. You are going to your new home tomorrow, Wednesday Oct 13th. Mom will be taking you and Dad will be following behind with your mattress and shower chair and I'm sure a lot of other things. I'm not sure how long your stay will be there but it is a great opportunity for you to get over some of the plateaus your on.

While we all have our own mixed emotions about Johnny attending another rehab, we are all excited about the progresses we know he'll make. Please be in prayer for Johnny as he adjusts to his new surroundings and new therapists. Pray for my mom who checks on Johnny even when she knows he's not home ... letting go is going to be hard on her. Pray for the whole family as we travel to visit Johnny often. Pray for Jackie who has another change in her life. She is such a strong little girl and handles so much with such grace! Thanks for loving my brother enough to check in on him and for loving us too!

Love you Johnny!! XO Jen

Year 1 Week 10 : Aug 17 - 23

2010-08-15T16:34:00.003-05:00

Johnny,

You were tag teamed by your therapists today. You worked on feeding yourself and you did really well!!

Ty hung out on Granny's couch while his mommy visited with you. By the looks of him, he didn't mind! Ha!

You keep coughing and mom keeps giving you Mucinex. You don't have a fever so maybe it's just allergies. You've been sleepy today, maybe it's from your pump being increased ... your at 901 now.

Jackie had a good first day of school. After you went to sleep, she and mom went to walmart to get a few things that she needed for school. They said walmart was a zoo and had to go to the dollar store to get glue sticks because walmart was out.

Love you!! XO Jen

Year 1 Week 9: Aug 10 - Aug 16

2010-08-15T16:29:00.004-05:00

Johnny,

Oh what a week you've had!! Praise God ... you FINALLY had your trach removed! What a glorious day!! The doctor said that it could take three weeks or up to three months for the hole to close in your throat. It was more than half way closed the next day!! This is such a milestone Johnny and one we've been praying along time for. I know you must feel tons better.

Valerie came out to spend the day with you on Saturday. She spent all day with you while mom took Jackie school shopping. They met Ty and I in Cedar Hill and we got Jackie all ready for her 8th grade year ... can you believe she's in 8th grade.

You had a great time with Valerie! Thanks Val for giving mom the much needed break!! Love you!!!

Your playing connect four and enjoying yourself!

Picture of you trach free. Your pointing at your arm brace and letting mom know you want it off.

Your still having to do breathing treatments but now it's the more traditional way ... instead of through your trach (which is g*o*n*e)!!!

Love you Johnny and so proud of your progress!! xo Jen

Year 1 Week 8: Aug 3 - Aug 9

2010-08-15T16:28:00.011-05:00

Johnny,

Today Mom took you to see Dr. Thomas. You had to leave home at 6:15 AM to get there by 8 AM. Your Physical Therapist met you and Mom there and the lady from Dynasplint came also to give you a new hand and wrist brace. At 9 AM you had twenty-one injections of botox in your right leg, both arms, back and neck. We won't see the results for a couple of weeks but it should relieve the spasticity in those areas so you will have better movement. Dr. Thomas was impressed that you did so well - you never even flinched. Last time you had eleven injections and the bill was $22,000.00 - a little outrageous given the size of the vials. You've been having a lot of what we thought at first was acne - which was new since you didn't even have it as a teenager. Mom talked to the doctor and he gave her a prescription for antibiotic gel. The spots are more like tiny cysts. Dr. Thomas upped your pump dosage of baclofen again - you are at 791.1 now. He said he thinks your max dose will be 2000. Mom is going to take you every two weeks to increase 15% each time. The baclofen helps the spasticity in your legs, ankles and toes. Since you were having injections in your right leg they had to put you on the bed rather than do the injections with you in your wheelchair. Turned out it was a bed that can weigh a person. Mom pushed the weight button and it registered 152.6. She asked the nurse how much to deduct for the mattress and pillows and the nurse told her it was automatic - you really weighed 152.6. Mom was shocked. She knew you had gained weight but this was more than you have ever weighed! She called you fatty and you laughed. Even with a Xanex and two hydrocodones in your system you were able to see the humor. You are amazing! You and Mom had to go by Walmart to get your prescription filled on the way home. You slept most of the time and when you got home you wanted to go to bed. Mom made you an appointment for August 20th to see the ENT doctor about getting your trach out. We will be praying for that to happen.

Mickey, Cody, Jackie, Ty and I went to Colorado for vacation this year. We had planned to go to the beach again but with the oil situation in the Gulf, we decided to give Colorado a try. The weather in Texas was in the upper 100's but the high in Colorado was in the mid 70's and at night it was in the 40's. Below are some picture of our trip. Thanks so much for allowing Jackie to go with us. When I asked you if she could go you gave me a thumbs up. She had a great time.

Jackie in New Mexico standing in front of a volcano

Cody and Ty standing in the same place

This is a brave little fox, he lives on the top of Pike's Peak, Co. He walked right in front of the truck and then went to the side of the road and pooped and then walked away.

The fox taking his Pike's Peak daily poop ... I don't know why we needed a picture of it but we did ... sad, I know.

Beautiful view on top of Pike's Peak

Cody, Ty and Jackie at Pike's Peak

This is a picture of a beaver

Jackie posing, we were in Estes Park

Jennifer and Jackie taking in the view in Estes Park

A mule deer in Estes Park

A duck in Estes Park

A blue bird in Estes Park

Cody and Jackie in Estes Park

A chipmunk in Estes Park

Another Chipmunk

Deer

Jackie bungee jumping in Winter Park
Jackie and her uncle Mickey on the ski lift in Winter Park

Ty having a bath at the rent house in the bathroom sink....He did not like it and he was telling me off!! When he got done, he peed on my toothbrush and my contact case. Mickey got a real kick out of that!!

Ty sleeping like an angel after his little bath tantrum

A deer on the mountain near our rent house
Beautiful Colorado view

Jackie in Winter Park

Another amazing view ... only God could create something so beautiful!!

This is the cabin we rented
Another view

Another view

A brave little chipmunk ... I guess they aren't as impressed with people as we were with them.

I thought this statue of a moose was really cool ... in the town we stayed in, a lady told us that she had seen a moose walk right through the 7-11 parking lot that morning. That would have been really cool. This is the closest I got to seeing a moose. I did, however, see a black bear but I didn't get a picture...after that, I had my camera ready just in case!

Big horn sheep

Jackie doing a little white water kayaking
Amazing view

Breckenridge, Co

Jackie Lynn ... Isn't she beautiful

Jackie stuck in a rock

Jackie and her leg stuck in a rock

Well Johnny, hopefully next year you can take a trip with us!! You are making such great process and we are all so proud of you!!

Love you!! XO Jen

Year 1 Week 7 : July 27 - Aug 2

2010-07-05T20:01:00.004-05:00

Johnny,

You are playing spider solitaire and doing a really good job!! You played for a while before you realized you could cheat.

You are sitting in the living room recliner and wearing your new dynasplints on your legs.

Speech therapy

Enjoying a hug from Ty

Your nephew loves you : )

Love you Johnny!! xo Jen

Year 1 Week 6 : July 20 - 26

2010-07-05T20:00:00.007-05:00

Johnny,

Today the mail brought you a special package from your OT, April.
The card said, "Happy Happy Birthday Johnny...old man! I miss you already.
Warmest Regards, April" She could always make you laugh and she sent you the
Three Stooges DVD's to make you sure you continued to laugh (even though she
has taken another job and won't be your OT anymore).

This is a picture of you and April - you are wearing the shirt your sister
gave you that says "Hey ladies - this could be you"

This is a picture of you after your shower. You turned your head to watch
the Three Stooges and laughed outloud. Thank you April for this special
blessing for Johnny.

Jackie has started a summer sewing project.

Johnny, you had a lot of tone and pain today. I tried oral baclofen and even an
agitation pill. You used the standing frame but it was scarey at first with
all the tone you had. You settled down after I gave you the agitation pill.

You had a session with your new OT and you seem to like her. She's very nice.
She tried something with your writing I never thought of. She printed your
name in yellow highlighter and had you trace it. You did well.

The harness for the standing frame was close to your trach and must have
bothered you - twice you grabbed your trach and pulled it half way out. Kim
and I had to fight you.

Aunt Donna sent you a birthday card and I read it to you . It was sweet
and you wanted to hold it.

Love you Johnny!! XO Jen

Year 1 Week 5 : July 13 - 19

2010-07-05T19:59:00.001-05:00

Johnny,

HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY DEAR JOHNNY
HAPPY BIRTHDAY TO YOU!!!

You had a great birthday week and you took advantage of your birthDAY ... by napping all day!!

Happy 39th Birthday Johnny!!

Love you!! XO Jen

Year 1 Week 4 : July 6 - 12

2010-07-05T19:58:00.003-05:00

Johnny,

I found this poem in your computer ... it's dated 2008, and for you to save it means it was important to you. I thought it was really good so I thought I would share it. Wish I knew where you got it and what you were going through at the time.

LETTING GO
To let go isn’t to forget, not think about, or ignore.
It doesn’t leave feelings of anger, jealousy, or regret.
Letting go isn’t winning and it isn’t losing.
It’s not about pride and it’s not about how you appear.
And its not obsessing or dwelling on the past.
Letting go isn’t blocking memories or thinking sad thoughts,
And doesn’t leave emptiness, hurt or sadness.
It’s not giving in or giving up
Letting go isn’t about loss, and it’s not defeat
Letting go is to cherish memories, but to overcome and to move on.
It is having an open mind and confidence in the future.
Letting go is accepting. It is learning and experiencing and growing
To let go is to be thankful for the experiences that made you laugh,
Made you cry and made you grow.
It’s about all that you have, all that you had and all that you will soon again
Letting go is having courage to accept change, and the strength to keep moving.
Letting go is growing up
It is realizing that the heart can sometimes be the most potent remedy
To let go is to open a door, and to clear a path and set yourself free.

Love you Johnny!! XO Jen

Year 1 Week 3 : June 29 - July 5

2010-07-05T19:55:00.009-05:00

Johnny,

The Lord has blessed our family today (June 29th)...Ty Allen Smith was born today at 12:32pm. Ty weighed 6 lbs 13 oz and 19 1/4 in long. He is absolutely perfect!

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

Praise God for the gift of Ty!!! I look forward to you getting to know your nephew Johnny.

Jennifer Smith ... before having Ty

Jennifer & Johnny before Ty was born

Mom & Jennifer before Ty was born

Jackie's "Ty's Cousin" T-shirt

Jennifer & Jackie before Ty was born

Johnny showing off his "Ty's Uncle" T-shirt

Mickey & Dr. Morehead before Ty was born

Mickey cutting Ty's umbilical cord

Ty getting checked out by his nurse

Ty Allen Smith

Jennifer meeting Ty for the first time

Jennifer after Ty was born

Cody meeting his little brother for the first time

Dad & Diana meeting Ty

Johnny meeting Ty for the first time

Mom, Cody and Johnny checking out Ty

Jackie & Ty

Johnny holding Ty

Ty Allen Smith

Ty getting his hearing test ... he passed with a perfect score

Ty napping

Ty going to his first doctor appointment ... he could care less

Jackie holding Ty

Ty sleeping in his nap nanny

Johnny looking at Ty

Johnny kissing Ty

Johnny kissing Ty

Love you Johnny!! XO Jen

Year 1 Week 2 : June 22 - 28

2010-07-05T19:54:00.007-05:00

Johnny,

6/23/10
You did really well feeding yourself today. You even made the chewing motion.

You spent 20 minutes today on the bike.

At 4pm today you spelled BED with your magnetic letters. Yesterday at this same time you wrote “take me somewhere where I can sleep”.

6/24/10
The Dynasplint lady came today; she will follow up with insurance to see about getting you ankle splints. Not sure about arms yet. Mom was working on the computer and gave you a pen, you wrote very clearly, “it’s time” … complete with the apostrophe. Mom asked you, time for what? She couldn’t read what you tried to tell her so she got the magnetic letters. You spelled, “to go home”. Then you wrote “theropy”. Mom said, yes you have to finish therapy. You wrote “kinda sucks”. Mom said, are you telling me therapy kinda sucks? And you said, “yes”. Then you wrote, “if it’s gonna work then we need to watch and not let the others turn us, we can do this”. What a great attitude!!

6/25/10
You went to Dr. Thomas’s office to have your Baclofen pump refilled, he refilled it 10%. You are now up to 598 ml. Your next appointment will be the end of August.
After appointment, you went to lunch with some of mom’s friends from her old work, you went to Mother Fuddruckers . Then you went to a thrift shop and then the Farmers Market. Afterwards, you, mom and Jackie meet me in Uptown Village in Cedar Hill. It was so good to see you. I think you were happy to see me too because you kept reaching out to touch my hand. My friend Jennifer Kids was with me and she told me later how great you looked and how aware you seemed. You were happy to see Cooper too. He said, Hi Johnny and you raised your hand to wave and then you reached for him. It was so good to see you!! After our visit, you headed home.

Jackie went out to gather the eggs and found a chicken snake in the chicken pen. Robert killed it.

6/26/10
Robert and mom put you in your standing frame for 40 minutes today. You said your knee was hurting. Mom had you type on the kids computer – you really typed well on it. You asked when you could go home. Mom told you you needed to stay here and have therapy. You asked “how many people will it take for therapy.” Then you typed “I’m going to get my knee fixed”.

6/28/10
Today you, mom and Jackie met Mickey and I at my doctor’s appointment. I had a sonogram scheduled and I had been talking to mom on the phone that morning and mentioned I had to get ready for the appointment. I thought you had therapy so I didn’t ask mom if y’all wanted to go but she said she wanted to and hopped in the van quick and fortunately was about to get to the appointment on time because the sono tech was running late. You really seemed to enjoy seeing your nephew on the screen and you seemed to know what was going on. After my sono appointment I had an appointment to see my doctor so you, mom and Jackie waited on Mickey and I so we could go to lunch afterwards. While in my appointment, my blood pressure was really high and I was swollen in my legs so my doctor told me that I was going to have a baby tomorrow (6/29). I started crying. My doctor said, last week you cried because I told you I wasn't going to take the baby…this week I tell you I am and you cry … what’s that about? Of course, I cried some more. I’m just so excited to meet Ty and a little scared about the surgery. What started out a lazy Monday quickly turned into a busy Monday. Mom got on the phone really quick to cancel your therapy for Tuesday so you could be at the birth.
So exciting Johnny … you get to meet your nephew tomorrow!!

Love you Johnny!! Xo Jen

Year 1 Week 1 : June 17 - June 22

2010-06-22T22:05:00.003-05:00

Johnny,

You are becoming quite the little terd! Mom said that she went to give you your meds tonight (17th) and you waved both hands in the air trying to slap her hands. You managed to spill the meds. Mom had taken the left cast off your hand and hadn't put it back on. She told you to quit hitting but you kept on so she tied your right arm to the bed with a pillow case while she gave you your meds. You were smiling while you were hitting at her. She told you it was not funny but apparently you thought it was. Caution: Watch for the right hook when you least expect it!!

Dad came by this afternoon (22nd) and set with you for a couple of hours. Y'all watched Madagascar. Mom had been working outside while April and Lisa were here doing your therapy...she got so hot she jumped in the pool and stayed there a while. Maybe soon you'll be able to take a dip too. Your suppose to have a test done to see if you can finally have the trache removed. I know that will be a huge step forward!!

Mom said after Dad left she took you into the living room and You, mom and Jackie watched a movie. You started touching your mouth and tensing up. Mom couldn't tell what was wrong so she got you the Dynavox. You typed "Take me somewhere where I can sleep". So, Mom put you to bed. It still amazes me how well you communicate your needs.

It's been a week since I saw you last...Driving out to where you are is getting painful. Seems like Mickey hits every bump along the way. We got to where I would drive but I'm having so many random contractions that it makes it really hard! I have two weeks and 1 day until Ty's scheduled C-section...July 7th. I can not wait for you to meet him.

Jackie helping you with the standing frame.

Sunday afternoon Mom, Jackie, Sandra and you went to the Hillsboro Outlet Mall and shopped for a few hours. Mom said you really seemed to enjoy your time out. This is a picture of you getting ready to load up and go.

Playing thumb war with Jackie

Jackie made dessert from a recipe in a magazine - by herself ... she's growing up!

Love you Johnny!! XO Jen

II Corinthians 12:9
My grace is sufficient for thee: for my strength is made perfect in weakness.

Isn't that comforting! Have a great week little brother!! Love you : )

Week 52 : June 8 - June 14, 15 & 16

2010-06-09T11:51:00.022-05:00

Johnny,

What a difference a year makes!! Today has been a year since your accident. I am so thankful that you are still with us although the journey for you has been hard! You have really made some great strides this week and had a set back or two but that's been true for this whole year! There was a point this year when Mom said that if all you were ever able to do was tell you daughter you love her, that would be enough and you do that ... and so much more! Your family is so proud of you and love you so much!!

I've included a few pictures from a year ago so we can remember how far you've come. This picture is of you and Jackie at Select Specialty. You were still in a coma and it was still very much touch and go. At one point during your stay at this hospital, the doctor told Mom that it was inhuman for her to leave you hooked up to your feeding tube. He suggested that we turn it off and let you pass. Oh Lord! That was not the right thing to say to our mother! You were not in that hospital for too much longer. Mom can not wait for the day that you walk into that doctors office and say what a mistake you suggested!

Your still in a coma but we were told that you could hear the music so mom would play your favorite songs for you through out the day.

Johnny and Mom at Select Specialty. That woman barely left your bedside! She was and continues to be dedicated to your care. You are so blessed!

Jackie and Jennifer praying for you. It was so hard seeing you like that! I remember the first time I saw you open your eyes just a sliver. I thought for sure you were waking up from your coma. I yelled for the nurse and she came in and said, oh, that's great progress ... I was a little disappointed! I wanted you to wake up now! At this point, we still didn't know the extent of your injuries to your brain.

Fast forward to the present:

You were typing on your dynavox this morning (6/8/10) while waiting for your physical therapist to arrive. You typed out "take me home". Mom explained to you that you had an accident and where you were, etc. Then you typed "I'm ready". Mom told you that you needed more therapy before you could live in your own house. You typed "when can I". Mom took you outside for a while and y'all watched Jackie swim. Mom asked you if you were hot and if you wanted to go in the house. You said something that sounded like "home" and pointed towards where you had lived. Mom was so heartbroken but she knows that it is yet another step in your recovery process. Now we're going to have to be careful because as you become more able to more you will begin to try to get out of bed and go home. Later that afternoon, mom asked you to tell her what you wantedand you immediately spelled "outside" so she took you out for a while. You chose to watch Jackie in the pool again.

Mom walked into your room this evening (6/8/10) and you had sweat on your forehead. Your AC was set on 73 and the temperature gauge showed 75.2. Mom asked you if you were cold. You raised up in the bed and said a string of words that she couldn't understand. Mom got the magnetic letters and you immediately spelled "I'm freezing" At least one thing about you hasn't changed...you are always cold. You seem to want so much to talk.

6/9/10
This morning Mom put the dynavox on keyboard and you spelled "I'm ready for this to end". We know this is a stage you have to go through but it is still upsetting! Tonight when Dad and Diana came over you pointed to your chest and then pointed to Diana and then towards the window. Mom thought you were saying you wanted to go outside with Diana. She got the magnetic letters and you wrote "lets go outside". After 10 minutes outside you were cold and wanted to go back to bed. You are so smart! When Mom got home from church, Jackie went into see you and told you to give her a kiss. You did. Then she told you she loved you and gave you the sign for I love you. You pointed to yourself, made the I love you sign and then pointed at her. How amazing! That's what we said all along...that would be good enough... but now we want the whole Johnny package back!
6/10/10
This morning you typed "I'm ry to end". When mom asked you what you were ready to end you typed "all of this". I know it's hard Johnny and I know your tired but, you have no choice...you have to beat this! We love you!!

Jackie is reading you a book. You seemed to enjoy it.

6/11/10
Mom and Robert ran some errands and while they were gone, Dad visited you.
At some point you wrote with your magnetic letters “my right toes”. When mom got home, she put you in bed and took off your shoes…then saw what you wrote. Whatever the problem was with your toes must have been worked out with the removal of the shoes. I love how you communicate now! Speaking of communicating, you typed out tonight: “I need to pee”, “how do I pee”, “I swear this is a joke”…mom asked you what was a joke and you typed “everything” and “when can I go home”. Mom took pictures of what you typed and then asked you whose camera she was using. You pointed to mom. Mom said, no, it’s your camera. You asked her “where did I buy camera”. Mom asked you some specific questions you could answer yes or no to, we are trying to determine what year your mentally in. She asked you who your best friend in school was...was it Bob? You said no. Was it Mike? You said no. Was it Donny? You said yes. That's correct. Mom asked you if you have a daughter and you said yes. She asked if you were ever married and you said no. She asked if you knew someone named Ashlee and you said yes. She asked did she have a daughter and you said yes. She said was Ashlee married and you said no. She asked if you were ever divorced and you said no. She asked if Ashlee had more than one child and you said yes. (You and Ashlee were married and divorced and Ashlee does have a daughter but no other children, so you got that partly right) She asked if you knew Adena and you said yes. She asked if Adena had a daughter and you said yes. She asked if Adena was married and you said no. She asked if Adena had any other children and you said no. (Adena was a friend from high school. She is married and has 4 children, so you got this one partly right too). She asked if your friends had been visiting you and you said no. (They have been visiting) She said, do you know Buddy and you said yes. She said, has Buddy been coming to visit you and you said no. She told you that in fact Buddy had been coming to see you since he found out about your accident. You didn’t remember that. She asked if you remembered your passwords to email or facebook and you said no. I'm sure all the questions are frustrating for you. It's a big help to know what you remember though. For anyone who reads this, I don't post this to hurt feelings...I look forward to the day when I can post and say Johnny remembers EVERYTHING!!

When can I go home?

I swear its a joke (everything)

How do I pee?

my right toes

You are asking Jackie if she had a good time at church.

Jackie is feeding you while you are spelling.

I picked you up a surprise when I went shopping...a head massager...Your enjoying it.

Your holding your head massager and laughing about something I said. We decided to call your head massager BOB so if you want someone to use it on you all you have to do is spell Bob.

6/14/10
After two days of constant pain, your waiting for Dr. Thomas to make it all better. Dr. Thomas increased the Baclofen pump by 15%. It is now at 543.7. Originally they told us it would need to be at 600 to 700 to get the full effect. They also prescribed you some liquid baclofen so you could get some immediate relief if this happened again. Seems your brain is starting to register pain and you have pain from arthritis caused by previous injuries. You seem pretty comfortable now.

After your pain management appointment, you had a dentist appointment. The dentist fixed some of your teeth that were damaged and you did really well. After the appoinment, mom and Robert drove you home but first they went through a state park.
Mom was thinking it might be a nice place to picnic until she saw a sign that there were alligators in the park. Ha! She changed her mind pretty quick.

This is a picture of the sunflowers outside you window. They came up from the seeds that fell from your birdfeeder.

6/16/10
Well, today is officially 1 year since...Your work is not over. April came and casted your right hand and your fingers are nearly straight. The left hand is a little behind, it's stiff from not being casted for a while so maybe next time you can have a straighter cast. We need to get your hands all fixed up so you can hold your nephew if he ever comes : )

Johnny, we are so proud of you. Keep up the great work!!

Love you!! Xo Jen

Week 51 : June 1 - June 7

2010-06-02T08:34:00.006-05:00

Johnny,

I am in awe of you!! You have been communicating so much lately. We give credit to the serial casting...once you got the casts off, you took off!! Mom told me that she took you outside with pen and paper and Robert told you to write his name. Robert wrote "Robert" on your paper and you got mad! You scratched out what Robert had wrote and wrote "Robert" yourself. Mom said it was like you were saying ... No! I'll do it! Mom also asked you to look around and write what you see and you wrote "fruit trees".

Well, Jackie is offically out of school for the summer. That should be fun for you to see her everyday, all day long. Mom said you're using your dynavox to call her more...ya'll laugh when you ask her if she's going to wear "that" to school.

Cody turned 19 on the 3rd. We went to Joe's Crab Shack for his birthday dinner. He was such a good sport when they asked him to turn his crab bib backwards and fly around the whole restaurant like superman!

It looks like you might get to meet your nephew a little sooner then planned. I've been having contractions for the past week and a half. The doctor told me that he'd like for me to hold off until atleast the 14th ... that will put me at 36 weeks and the baby's lungs should be developed by then. The 16th will mark "one year" for you since your accident. It's just so amazing to me how much we have all been through this year. In all honesty, you shouldn't be with us and yet you are and making great progress towards recovery! I shouldn't be expecting a baby but I am...he's a little miracle! Dad and Diana should still be living in Red Oak. Mom should still be working and driving to dallas every day. God never gives us more than we can handle...right?!! I miss you! And, I love you! And, I'm so so proud of you!!

Love you!! XO Jen

Week 50 : May 25 - May 31

2010-06-02T08:17:00.008-05:00

Johnny,

Well, You've had a busy week. On the 25th, your daughter turned 13...she's a teenager now!! It's so hard to believe!! I can remember the day she was born with all that black hair and so tiny!! Do you remember Cody was still in his body cast and we just wheeled him in to see her in his wheelchair. You would be very proud of your little girl, I know she's proud of you!!

Speaking of being proud, Cody bought a truck this week and one of the things he said was, "Uncle Johnny would be proud I got a Chevrolet".
This is a picture of Cody counting out his down payment.

Standing next to his new ride.

He was so ready for me to put down the camera so he could drive off in his truck : )

YES! I cried as he drove off the lot!! That's a mother's choice! I did think about you laughing at me crying as Cody drove away and then I decided your still a butthole and I didn't care! So, I took a few more pictures and cried some more! It's hard to believe how fast our kids are growing up!!

Jackie is singing "Johnny Angel" to you ... look at how you are looking at her.

Jackie dancing for you as she sings to you.

Mom took Jackie and a friend to Hawaiian Falls for her birthday. (Isn't mom brave!) Mickey and I came out to see you and spend the day with you. We decided to take you for a ride and ended up at dad's new place in Hubbard. It's the first time you've been there and you just kept looking around...it's a lot different then their house in Red Oak. You did really well and for our first solo trip with you, that was a good thing!

When we got back from Dad's, you were tired so we put you back in bed.

On mom's way home from the water park, she bought a pool. This is the some assembly required part : )

You're getting ready to go outside. It was still morning but man was it already getting hot! I'm sure you were sweat'n in your casts!

We watched mom dig up her potatoes.

Looks good! Didn't mom do a great job ... there were onions too but I didn't take a picture of those, I don't like onions : )

Enjoying the outside.

Jackie taking a morning dip in her new pool...she's talking to you.

You got your new casts put on Tuesday the 26th and taken off again on the 30th. You'll have them put on again June 2nd. The therapist is planning on doing this atleast two more times. It's already an improvement.

Love you Johnny!! XO Jen

Week 49 : May 18 - May 24

2010-06-02T08:13:00.005-05:00

Johnny,

You are working hard to strengthen your swallow muscles and to improve your speech. In this picture, your therapist put the electrodes on your cheeks. You tolerated this therapy very well!!

You got new casts put on May 19th and they will come off again on the 23rd or 24th. The serial casting is working, you're able to open your hands more.

Love you!! XO Jen

Week 48 : May 11 - May 17

2010-05-19T15:41:00.007-05:00

Johnny,

You have not been a happy camper this week...concerning your hands. Your hands have to be serial casted in order to help with the contractures of your fingers and wrists. Wednesday the 12th was the first casting. You didn't like it too much but so far your fingers are not swollen or red. These casts will come off Sunday (the 16th )and a new pair will go on again Wednesday (the 19th).
Your therapists are putting on your casts.

Your laying in your bed after having your casts put on.

Sitting in your chair with your new casts.

Well, you survived your first day with the casts. Mom said that you don't seem quite so miserable today (the 13th) but that the day had just started. She doesn't think she'll be taking you outside for a while in fear that it might make you sweat in them.

Mom and Robert's annual fish fry was Saturday (the 15th) You and I stayed inside most of the time...I took you outside once and you and I both started sweating, it's a very humid day, so we went back inside in the AC!! You seemed to handle all the people pretty good. At one point you and I went to your room and put in a movie and cranked the AC to 68 degrees.
This is a picture of your niece Ivy, she hasn't seen you since before your accident so she was a little worried to stand too close. You told her hi.

Mom's giving you some frozen ice.

Dad came over Sunday and he and mom took your casts off.

Mom said that she's trying to work as much as she can with your hands while the casts are off. You've been working with your dynavox. You pushed the button that said "Jackie come here please" and then you asked her "how is band?". She showed you her new braces and then you pushed the "are you wearing that to school?" button. You, mom and Jackie all laughed - it was like you were asking if she was wearing her braces to school. Mom had you type on your keyboard a while and you typed "I needeed tttto take a nap" When you typed the four t's, mom told you she didn't know of any words that had four t's in them. You laughed. Then she read it like it was written like she was stuttering and you laughed. Mom got you layed down in bed to nap and told you you never take naps...Robert told you he was going "tttto take a nap" and you laughed at him. You are becoming such a funny guy!

You have developed a new sore on an old sore on your back and it's caused mom some concern. She's going to call the doctor on it or see if Angels at Home can come out to look at it. We are thinking it's caused by your new wheelchair. Bed sores are a real concern and mom is on a great mission to prevent them! She's doing a great job!

Mom said she tried to get you to say Okay by making an exaggerated O and K. You didn't respond. Mom said, Don't leave me hangin and you laughed outloud. Mom told you that her face might freeze like that and you thought that was funny.

Mom told you that it was getting hot outside and that you would like that. She reminded you that you always mowed your lawn during the heat of the day. You just grinned.

Mom was shaving you and told you she wouldn't want to have to shave every day. She told you that maybe God intended for men to be hairy and have a beard down to here. You thought that was pretty funny.

Mom asked you to type on your dynavox the name of someone you might like to see. You typed "no one". She asked you if there was anything you wanted and you typed "nothing". I told mom well, at least he knows what he doesn't want.

Robert helping you in the standing chair.

Picture of Cody's new shirt : )

Love you!! Xo Jen

Week 47 : May 4 - May 10

2010-05-11T15:33:00.013-05:00

Johnny,

Well, it would be nice if the doctors that failed your swallow test could get a look at you now! You ate a jar of turkey and a 1/2 jar of apple blueberry this week. You gulped them down no problem! Your speech therapist took these pictures of you feeding yourself. You did an awesome job!

I absolutely love your sense of humor...you are so funny and you make your own jokes when you can!! Mom said that she was having you practice the sounds : la, lo, le and in the middle of it, she sneezed. She told you you didn't have to try to say that (the sneeze) and you started laughing. We all live for moments like these! Your such a happy man!
This is a picture of you laughing at one of your therapist, April's jokes.

On another speech therapy day, Lisa tried to get you to eat some turkey and you didn't want it. Mom suggested she try oatmeal apple and you did better with it. She also gave you swallows of water and you did fine with it as long as it was 1 ml at a time. The night before you ate an entire jar of banana strawberry and you did great. Again...where are the doctors when you need them to see something : )

Mom said your getting better on your dynavox. You were working on it and you pressed the button "come here mom" and she was standing right next to you. She put her face to your face and asked you if this was close enough...ha! You both started laughing! Such a great sense of humor you have : )

I know you are so proud of your daughter, she was inducted into the National Honor's Society Friday evening. Mom said you went to the ceremony and were a little nervous but very proud of her. She looked very pretty but you'll have to take my word for it, the battery was dead in the camera so there isn't a picture...sorry!

You stood in your standing frame at 90% ... WOW!! That's so great! Here's a picture of you and Cody before you were standing.

This is you standing...I know it's hard Johnny but your doing such an awesome job!!

You, mom and Diana : )

Look at you go! Your working a puzzle and doing great! You even pick up pieces of puzzle using the edge of the table. Your a little slow on the release but your getting the job done! So proud of you : )

Mickey and I came out Saturday and spent the day with you and also mom...it's Mother's Day weekend. You and Mickey were cracking yourselves up all day! On the drive back home, Mickey kept talking about all the things that made you laugh. You were a lot of fun today : ) It was a great day!!!

Love you so much!! XO Jen

Week 46 : April 27 - May 3

2010-05-03T19:24:00.006-05:00

Johnny,

Well, I said in my last post that I would blog about your dysphasia test (swallow test). You did not do too good. I guess you could say you failed the test. Mom and Diana feel like you were set up to fail. Meaning, they didn't listen to the people that are around you and know you most...including your speech therapist. You'll get another chance to do the test again later. After your appointment, Your speech therapist worked with you under a tree at the hospital on your dynavox. Your really getting good at it!

Jackie, Robert and Mom put you in your standing frame for about 30 minutes. This is a picture of them getting you set up in it. You got to 60% standing. It's really an ordeal putting you in the frame and getting it all set up for as little amount of time your in it but it is so beneficial!! Mom took a couple of really cute pictures of Jackie helping out but didn't realize she didn't have the memory card in the camera. She blamed it on a senile moment but you and I both know that that is how our mother rolls!! She didn't take pictures of it but did tell me that she put your shoes on the wrong feet again...what you must be thinking while she's doing it...ha! Her first mistake is repeating her "senile" moment to the one in charge of the blog...(insert evil laugh).

Brian, Monty, Mom, Robert, Jackie and her friend Erin all worked on painting the new addition to the house on Saturday. When Mickey, Cody and I got to Mom's on Sunday, you couldn't tell where the new began and the old ended. It really looks nice!

Jackie and Erin helping out with the painting.

Mom and Robert's church was having a youth auction to raise money for the youth and they took you. This is a picture of you and Robert arriving at the church.

Your in the church during the auction. You can see Jackie in the background in the church kitchen. The youth raised $16,000 dollars during this auction.

You and Mom left the auction early...Mom told Robert she would be fine getting you back in bed by herself. She would use a method called lift, pivot and turn. Well, she forgot one thing ... she didn't lock the bed. She got you lifted, she got you pivoted, she, you and the bed went rolling and you and mom ended up on the floor. Mom said you were on your knees on the floor and it looked like you were praying...ha! This is a picture of you finally making it from the floor to the bed. Do I dare ask her if this was another of her senile moments...ha, ha!! You really have to laugh to keep from crying!

You had an appointment today to get botox. This is a picture of you waiting on your doctor. You got 11 injections with a 3 inch needle. Mom said you didn't even blink. The nurse told mom that each needle cost $2,000 so you had $22,000 dollars worth of botox injected in you today.

The botox machine, Pretty interesting.

After your appointment, you were pretty wore out...this is on the drive home.

Well, all in all you had a pretty great week. I'm proud of you!!

Love you!! XO!! Jen

Week 45 : April 20 - April 26

2010-04-29T19:47:00.006-05:00

Johnny,

You've had a productive week!!!
You stood in your standing frame at various degrees for a total of 28 minutes. You got to 50% and did very well!!

Mom made some terriyaki chicken (Mickey's recipe) and put it in this really cool holder that you can chew on but won't get choked on. You really enjoyed that!

You also had a sucker today. Mom said you chewed it off the stick. She said she thinks you enjoyed the stick the most ... ha! You had a few spoonfuls of food also but you didn't do too good with that. The main thing is, you trying and that's terrific!!

Mom said that she took you outside and you watched her and Robert dig up Red Oak trees and put them in pots. This of course is courtesy of a forgetful squirrel who stashed his acorns and then didn't dig them up so now there are baby trees in the yard. Mom said ya'll "gotta little mud on the tires" caused by the rain the night before and tracked it all in the house from your room to the kitchen. That does not sound like fun to clean up!

Buddy and Tammy came out to see you and spent about 4 hours. Johnny, you are so blessed to have such good friends! They are taking great care of your dog Abby too!

Mickey, Cody and I came out Sunday after church to see you. When we got there, Dad was spending time with you while mom, Robert and Jackie were at church. We had a great visit and it was so hard to leave Sunday evening. At one point, there was you, me, mom, Jackie and Cody all watching a movie in your room. It was great!

Your new wheelchair deluxe arrived finally. It is built for comfort and speed (as Jackie found out rolling you down your ramp) Mom says that is a story for another day...I haven't heard it yet but will blog when I do, I'm sure it's hilarious!

Well, your having your swallow test tomorrow (Tuesday April 27th). Your speech therapist, Diana and Mom are all going. I'm sure you'll do great! I'll report on that next week.

Love you so much!! And, I am so proud of you and your progress!! XOXO Jen

Week 44 : April 13 - April 19

2010-04-20T16:21:00.007-05:00

Johnny,

What a busy, doctor visiting, week you've had!!
Tuesday you had a dentist appointment with Dr. Stevens. You did so good!! You bit down on the x-ray wings to get pictures of your teeth with no problem at all! Your going to need some fillings in the front on the teeth damaged in the accident but you have nothing going on in the back of your mouth...good news! On Thursday you had an unplanned visit to a GI doctor, Dr. Ostricil. Mom noticed that your feeding tube was leaking and you were groaning as if in pain all afternoon so she got you in to see the GI doctor. They did a temporary tightening of your feeding tube and scheduled you for surgery to have it replaced and to do a little exploring around your stomach lining. Saturday, Valerie brought her twins to see you...it was the first time you've met her kiddos. Brandy and her kids stopped by too. Your surgery was scheduled for Monday. We had you there at 10:30 and surgery was scheduled for noon but it was after 1:00 before you were taken back. Your surgery lasted about 30 minutes and then you were in recovery. You were so funny before they took you back, you kept sticking your tongue out at me and you were cracking yourself up. You were being really funny! After your recovery time, we loaded you up in the wheel chair and mom and Robert headed home with you. When I checked on you today, mom said you didn't sleep much that night but you seemed fine. Dr. Ostricil said she didn't need to see you again until next year unless something came up ... she doesn't realize that it's not going to be too long and we'll be removing that feeding tube for good!!

Your wearing your new shirt and shorts. You really like the eagle on this shirt.

Your meeting Valerie's son for the first time

Your outside the GI Services department waiting for your turn

Your getting a pep talk from mom

Before surgery

Smiling ... I love it when you smile!!

Your cracking yourself up

After surgery

Love you!! Xo Jen

Week 43 : April 6 - April 12

2010-04-13T15:24:00.010-05:00

Johnny,

Your standing frame came this week. You used one while you were in Baylor Rehab and you did very well with it. This one seems to be top of the line but like everything, it has it's good and bad. It doesn't seem to be very user friendly to get into. I guess if you were able to get in by yourself it would be easier but if you were able to do that then you wouldn't need the standing frame...would you?

Your therapists did some back stretches with you.

Mom took you outside to get some sun...is that the camera or the bright rays bouncing off your white legs? My eyes, my eyes...ha, ha!

Thursday you gave mom a scare. She came into the check on you around 6 am and you had a river coming out of your mouth. You had thrown up in the night sometime between 2 am and 6 am. It was a lot and it was everywhere. Scarey! We never did figure out what happened although we all have our own theories. Mine is that you had a coughing fit and it made you throw up...happens to me sometimes : )

Saturday I came to see you and ended up staying all day. It was a great visit. It gave mom time to work on your garden outside while Robert worked on your porch and walkway. We went outside and sat most of the day on the swing on the front porch...well, I sat on the swing, you sat in your wheel chair. But, the day was beautiful and you really seemed to love being outside.

Your giving me a wave

Petting Izzy

Jackie with her work tools on...I think that was the hardest she worked all day, putting those tools through her belt loops...ha!

This is a picture of the flower bed mom is making you. There are roses, bricks, rocks and monkey grass all transplanted from your yard.

This is the window to your room

Beginnings of the ramp

Door to your room

Porch & ramp

Sunday afternoon mom, Jackie & I took you to Wal-mart. Mom had a list of things to get and we thought you might enjoy looking around the store. You did so good, I was so proud of you!! You pointed out things and seemed really alert!

While we were gone to Wal-mart, Cody, Mickey and Robert worked on the porch/walkway. They made great progress!
Jackie & Cody nailing in boards for the walkway

Monday you had a doctor appointment with the trach doctor. Mom and Diana took you and had a list of questions from Lisa, your speech therapist. The doctor said you are a good candidate for trach removal. That is, if you start swallowing and eating on your own. This means that you still have a lot of work to do but you will have a great reward at the end!! The doctor also ran a scope down your nose and said that your vocal cords looked great. That's good news too!!

Love you!! Xo Jen

Week 42 : March 30 - April 5

2010-04-08T09:48:00.009-05:00

Johnny,

You had some special visitors this week!! David and Melinda came from California and spent the afternoon with us. It was so good to see them and you really impressed them with how good you look and how well your doing. It was a great visit and we were sorry to see them leave...wish they could have stayed longer : (

While David and Melinda were here, Lisa did electrode therapy on your throat. You were telling us that you were okay in this picture.

Mickey, Cody and I came down this past weekend and spent the whole day. We took you outside because the weather was so great. You really seemed to enjoy it. Mom had mentioned that she wanted to get the bricks from your yard and put them around the flower garden she is planning on making after your porch is built. Of course, I said let's do it! So, we did.

Your giving me a wave...we are about to go outside.

Your watching mom work in the garden. She was telling me about the bell peppers she was about to plant when she noticed that she didn't have green bell peppers, she had jalapenos. You were forever trying to get her to plant some before your accident...she's been trying to figure out how you got them in her shopping basket. You are amazing! ha!

You really enjoyed being outside.

We were heading down to your yard to gather bricks and took you with us. In this picture it looks like your fed up and your going home.

Your watching us work. It took about 4-5 trips to gather all those bricks and we still didn't get them all. I caught you laughing at us a few times...wonder what you thought was so funny?

Cody's walking you back home, it was time for your meds and food.

Meeting of the minds : )

1st day on the porch construction.

Mom and Diana took you to Dallas to see Dr. Thomas on Monday. Dr. Thomas is the baclofen pump doctor and he is so nice! He refilled your pump, increased it 10% and agreed to do Botox injections on 5/3 at 9 am. He gave mom a doctor's order on the theracycle so she can try to get insurance to pay some of that. That would sure be nice! He went over all your medications with Mom and Diana. He stopped some of the medications and cut some of them in half. The antidepressant your taking is really a sleeping pill and mom is going to decrease it each week until it's gone...unless you stay awake. All in all, it was a very beneficial visit.

Love you so much!! xo Jen

Week 41 : March 23 - March 29

2010-03-28T17:25:00.011-05:00

Johnny,

Well, we got your motorcycle posted on Craigs list. The information and web address is listed below. I know you loved that bike but frankly, I can't wait to see it leave my garage. It's a constant reminder, suffering minor damage to the gas tank while you are paying the ultimate price.

2008 Harley Davidson Fatboy
Date: 2010-03-26, 4:10PM

Windshield, Leather Bags, Light Package. 2008 Softail FLSTF, 6 Speeds, 1584cc Displacement Engine, 2032 miles, Minor Damage to Gas Tank has been repaired.
Location: Midlothian, Texas
Original URL: http://stillwater.craigslist.org/mcy/1662990285.html

Mom spoke to the speech therapist and she is going to try to schedule a swallow test (x-ray) for you. Your swallowing immediately...which is a big deal! Swallowing without aspirating means your a step closer to solid foods!
This is a picture of you outside mom's house. You were waving to mom, enjoying the nice weather.

I just love this picture. Your feeding the chickens grass. Someday real soon you'll be able to enjoy the eggs that they lay everyday!! I kid mom all the time about not eating those eggs because they came from a chicken's butt. Her response to me is where do you think the eggs in the store come from...ha!

You spoil Izzy!

You are brushing your teeth with your speech therapist. (mom needs to change the date on her camera...it's not April yet)

Using your brushing skills you just learned.

Working with a spoon. (we all take these simple tasks for granted!)

Your holding a cold lemon swab. Lemon makes my mouth water too!

Love you so much little brother! xo Jen

Week 40 : March 16 - March 22

2010-03-24T19:52:00.004-05:00

Johnny,

You've had a very busy week, full of new progresses.
Your physical therapy girls tag teamed you this week. The two pictures below are of you "hanging out". They were stretching your back. You did very well.

There pictures are of you on your tummy for the first time. I bet that was a weird sensation for you! Mom said you did really good.

Watching TV with Izzy. She loves the attention!!!

Mom and Jackie attended a Dynavox training seminar in Richardson Monday morning. Jackie navigated and mom took notes. She said hopefully she can remember all the helpful tips she learned when she gets home. Diana stayed with you all day.

When she got home, mom changed the screen you had been using - hiding all but four keys. She told you which one to hit and you kind of explored. Most of the time you drag your forefinger hitting a lot of keys along the way to the one you want, or you drag your knuckles. Mom told you to go to the "my needs" folder then touch "I have pain". You did that. Then she told you to push the button you would push if you had pain in your arm. The "my needs" and "I have pain" buttons were at the bottom of the screen and fairly easy to push but the arm button was three over and three up which was harder for you. You stared at it for a while and just when mom thought you might not understand, you raised your hand over the screen and deliberately pushed the "arm" button. Mom hollered and fussed all over you and you just grinned.

Mom is excited now about the Dynavox and she can see the potential in it for you to communicate. Special thank you to Karen, speech therapist at Traymore Nursing. She was the one who got the ball rolling to get you the Dynavox. We have Angels along the way!!!

Love you!! xo Jen

Week 39 : March 9 - March 15

2010-03-18T21:23:00.010-05:00

Johnny,

I hate to repeat myself every week, but, what a great week you had! Your theracycle was finally delivered. It's like a stationary bike...used to exercise and strengthen your legs. You are riding it for 10 minutes at a time for about 2 MPH.

You also got your Dynavox this week. A Dynavox is a personal computer that does so much!!! It can be programed to turn the tv on and off, or the lights on and off. We can add your i-tunes and internet to it. Eventually we can add your facebook and you'll be able to communicate with your friends. Mom and Jackie are going to a training seminar to learn all about it.

Your occupational therapist came this week and did Sacral Cranial Therapy on you. I have no idea what that is... She puts her hands on your spine and it helps increase the spinal fluid flow. Your speech therapist evaluated you on Friday and said you were getting everything right - multiple choice, etc. You knew your age and the day of the week but you thought it was January 2007. Guess we'll have to work on that.

What a beautiful day the Lord blessed us with Saturday. Cody and I headed to the country to see you. Our plan was to spend a few days since it's spring break. I had mentioned to mom that I'd like to take you fishing so when I got there, she was ready to head to the lake. Mom, Cody, Jackie and I took you to Oak Park. They have a dock that we wheeled you out on. There wasn't much wind and the sunshine felt great. Cody sacrificed his sunglasses for you so you'd be more comfortible. You seemed to really enjoy yourself...although the fish were not biting. When we got back to the house, we watched a movie...Men in Black, the first one. I forgot how gross that movie is! Daylight saving time again. Spring forward. I wonder how the time change will effect you.

I blew some bubbles for you and told you to catch them. You had the best time trying to catch those bubbles.

Your playing Spider Solitare on your Dynavox....I think your cheating!!

So cute in your green taboggin!

Hang'in out with the guys.

***Saturday night Dennis the Menace capades***
I couldn't sleep and I knew mom would be up to turn you. She gets up every 3-4 hours - she does this to prevent bedsores...her track record is perfect! Anyway, I woke up at 12:30 and someone was in the bathroom. I thought it might be her so I checked on you. You were asleep and you had been turned. I came back and the light in the bathroom was off but the door to the room I was sleeping in was closed. I opened it and there was a body in my bed...Jackie's body. I got her back to the couch and went back to bed. Turns out mom got up at 12:00. So, at 3:30am same thing....I checked on you and you were asleep and turned. Mom had gotten up at 3:00am. Once again, at around 6:30am, I missed her by 30 minutes. By 8:00am, she was up for the day giving you morning meds. This is an everyday thing for her...and you. I had no idea how detailed her nights were.

Monday around 9:30am, Mom and Robert headed off on a much needed day-trip. I had you all to myself and you had a virus! I never changed someone so much in one day before! I don't think I sat down all day and by that evening my ankles and feet were swollen. I sure have an eye-opening appreciation for what mom does for you. God sure knew what He was doing when He blessed us with mom!!

Johnny, Every time I spend time with you I see miracles. I know your there and your on your way back to us. I trust that you can do it, that you want to do it. I'll continue to pray hard, you continue to work hard. I look forward to the day when you testify to the awesome miracles God has worked in you!!
Matthew 17:20
He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you."
PRAY UNTIL!!! PRAY UNTIL!!! PRAY UNTIL!!!

Love you!! XO Jen

Johnny's Harley

2010-03-09T15:20:00.002-06:00

Johnny's Fat Boy Harley is FOR SALE

*Light package
*Windshield
*Leather saddle bags
*Maintenance package
*Low Miles
*2008

**Minor damage of the gas tank repaired.

Asking: $18,000

Contact: Nancy @ 972-345-0454 or Jennifer @ 972-921-4335 if your interested.

Week 38 : Mar 2 - Mar 8

2010-03-08T17:28:00.008-06:00

Johnny,

Well, You must have felt the prayers being lifted for you this week. You had such an awesome week! You reached milestones and tried new things. I am so proud of you!!
I know I've said it before but for me...I need to hear things over and over sometimes. God's timing is always perfect, even if we don't feel that way most of the time. I have to remind myself that God is not in control if I'm still trying to get things done in my own power. God will not compete with me for control of my life. I need to lay everything down at His feet, then step back and wait for Him to do the work. It seems so simple and yet when I give things to Him I find myself taking them back. Patience Jennifer! I just love you little brother, so much, and I'm struggling to understand. John 11:40 says, "Did I not tell you that if you believed, you would see the glory of God?" I do believe! Isaiah 59:1 says, Surely the arm of the Lord is not too short to save, nor His ear too dull to hear. What comfort it is to know that He hears us. I lift you up Johnny, so much so that I'm sure God is saying, "you again!" Ha!

Your speech therapist tried something new with you this week. Lisa used electrodes to shock your swallow muscles. She is going to do this every day. This first picture the setting was on low which caused you to feel needles and pins. The next picture the setting was raised and it was just grabbing the muscles. You did really well with it! It's true what they say, if you don't use it, you lose it. Well, in this case it's not lost, it just needs to be retrained.

I have to say that I've looked at this picture several times this week and it filled my heart with such joy everytime, making me laugh and cry at the same time. Just to look at the picture it looks like your poking me in the eye and cracking up about it but that's not the real story. I first have to apologize to Buddy because this is most definately at his expense although after he sees how you hearing the story made you crack up, I'm sure he won't mind being the butt of the joke. So, Buddy, I apologize. Here goes - Mom and I were talking to Kim, your therapist, about how you skipped over the cussing stage in your Rancho stages. I told mom that I thought you actually went through the stage because you were very angry and used your right hand to grab and throw and pinch. It was a wild time for your right arm although you never uttered a word. That's when Buddy came into the picture...I was telling mom, don't you remember when Johnny pinched Buddy on his chest and would not let go. I looked at you and you were cracking up. You sounded like muttly, the cartoon dog, laughing. Meaning, there was a little sound but clearly your face was laughing. You laughed for a while, long enough for mom to get her camera. I love the moments like these with you...I know it's just a matter of time!!

During therapy, Kim had you raising your foot to meet her hand. You did it several times. This is something you've not done before. We think you must have gotten a heads up that it was report card day. It was funny, and there's not a picture of it, but when Kim was having you lift your knee from a straight position to a slightly bent position, you wouldn't do it. But, as soon as she turned her back you popped that knee up. I was standing at your head and saw the whole thing. She'd turn around and you would do nothing and then turn her back and you'd do it again. You have such a perfect sense of humor! She was playing along too...little did you know, you were getting your therapy done : )

Here you are raising your knee to meet my hand. You really are making great progress!!

Mom was trying to get you to put your lips together. That's one of your speech therapy exercises. I just love the way you look at her. Why does it take an accident to slow people down enough to show how much they love each other?

Love you!! XO Jen

Week 37 : Feb 23 - Mar 1

2010-03-02T13:00:00.006-06:00

Johnny,

You had a very productive week. I am so proud of you and the progress you are making!! It's so easy to get discouraged because the timing of your healing seems so slow. I keep reminding myself that your recovery is on God's time, not mine.

It snowed Tuesday. Mom took this picture of a bird sitting outside your window.

Wednesday, you had a dentist appointment. Robert and Mom loaded you up in the van and took you to your appointment. You're going to have to have some work done on a few cavities and on the tooth in the front that was damaged in the wreck. You tolerated the visit well!

During your speach therapy, you held the tongue depressor between your lips to the count of 40. That took great concentration and control. What an awesome job!

You also worked with the magnetic letters during therapy. Your therapist, Lisa, asked you to spell her name. You started out with an AM and then spelled LICA. She told you no, it's not Lica, the letter sounds like "c" though. You grabbed the K and when mom and Lisa started laughing, you laughed too (soundlessly) and grabbed the S and handed it to her. You have such a sense of humor!!

I came to see you on Saturday and we were watching a movie together. You were sitting in your wheelchair and I was sitting on your bed. I watched you being sneaky trying to turn the light switch on that was on the wall near your wheelchair. It was a pretty high reach for you but you kept trying until you got it!

Working on your quarterback throw!!

Jackie bought some new shoes and came in to show them to you. She asked you, "Daddy do you like my new shoes?" And, you gave her a thumbs up!

Love you!! xo Jen

"I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11
**Please continue to pray as God works his miracles in Johnny.
Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

Week 36 : Feb 16 - Feb 22

2010-02-23T11:06:00.006-06:00

Johnny,

Cody and I came to see you on Tuesday and we were greeted by two deer up the road. The buck took off but the doe stayed around for her picture to be taken.

I was able to be there when your physical therapist worked with you and I saw you move your right leg. She told you to kick it and you did a little bit. Then she told you to put your head to your chest and lift it until your head was resting on the headrest. It wasn't a fast motion, it took you some time but you did it all on your own twice!

Mickey and I found out that we are having a little BOY!! We are so excited! When I told you, you gave me a thumbs up.

Jackie does your night feedings and doesn't like for anyone to help her!

Occupational & Physical therapy ... tag teaming you : )
We had a room-warming party for you on Saturday and invited a few people to come out. You received so much stuff, the generosity was overwhelming! There are so many people that love you so much Johnny!
My friend Jennifer Kids wrote this poem for you:

Lives have been changed
time seemed to stand still
yet God laid before us
His good & perfect will
with the trials & changes
that quickly sped past
God's mercy & grace
are the true things that last
a homecoming sweet
with love & care all around
Johnny's future is here
a new room, safe & sound

You had a doctor's appointment on Monday with the Baclofen pump doctor. Mom said that she and Diana took you and you tolerated the drive well. The doctor increased your pump which may make you sleepy for the next 4 days.

Love you Johnny!! xo Jen

Week 35 : Feb 9 - Feb 15

2010-02-23T10:30:00.005-06:00

Johnny,

This has been a crazy week. It snowed on Thursday like I've never seen it before in my life. I took some pictures. By the time we made it out to see you on Sunday, we still had tons of snow at our house but you didn't have any at all...just water puddles. You've been doing really good with your physical, occupational and speech therapies.

My house

My back yard swing

Would you say mom needs a rest? She's even got a diagram on how it should go...LOL!!

Ready for your shave
Love you!! xo Jen

February 10, 2010

2010-02-11T22:02:00.003-06:00

Johnny,

An aide came this morning to give you a bath. You didn't have any
therapies other than what Mom and Diana gave you. Diana came at noon and stayed with you while Mom and Robert went to pick up some medical supplies and go to the grocery store. Mom gave you a whole jar of apple blueberry and you ate all of it without aspirating any. That's great! Mom asked you if you might like to go to church on Wednesday nights and you signed yes. She said she would start taking you next week. You'll enjoy getting out, the music and the change of scenery.

Love you!! xo Jen

February 9, 2010

2010-02-10T15:50:00.002-06:00

Johnny,

You had a Dr. appointment with Dr. John today. Mom said that he went over all your medications and explained some things to mom about them. You did very well. I bet it was nice for you to get out for a while.

Physical Therapy came and did some leg exercises. She gave mom some exercises to do when she didn't have anything else to do. When mom told me that, I laughed! That woman is so busy...she has no extra time. But, I bet your leg exercises get done!

Love you!! xo Jen

February 8, 2010

2010-02-10T15:49:00.001-06:00

Johnny,

Speech came for two hours today. You did really good. The therapist told mom that she's going to have to change her goals for you, she has them too low.

Dad came for a while to visit.

Love you!! xo Jen

February 7, 2010

2010-02-10T15:47:00.002-06:00

Johnny,

Diana came this morning while Mom & Robert went to church. After church, Buddy came by to visit. Mom said you had a really good visit with him.

You worked on your exercises today.

Love you!! xo Jen

February 6, 2010

2010-02-10T15:42:00.002-06:00

Johnny,

Well, it's getting harder to blog your daily events...mostly because your events from day to day are the same. I may start blogging a week at a time.

Mom and Robert have been giving you a shower every morning. Mom said that Robert helps get you into the shower chair and she bathes you and then he'll help get you back in bed. You really enjoy your morning showers. You've been watching movies and listening to music when your doing your therapies. Mom put some bird feeders outside your window for you to enjoy but the birds haven't figured it out yet. You always had bird feeders outside your windows before your accident.

Your temperature is 99 - your getting tylenol and antibiotics.

Love you!! xo Jen

February 5, 2010

2010-02-05T21:43:00.002-06:00

Johnny,

Your temperature today is 99 degrees. That's a pretty normal temperature for you. because of your brain injury, your temperature tends to run a little high. You do have a virus though and the doctor gave you an antibiotic. So, I'm wondering, did you get me sick or did I get you sick.

Rehab without walls came today and did physical and occupational therapy with you. Mom said that your a flirt with one of the therapists. Mom said while the therapist was trying to put your shirt on and struggling because you wouldn't help, you gave her a goofy grin when she asked why you won't help her. Typical! She said, I think your messing with me ... you grinned.

Diana came today and did your respiratory. Mom said that they were going to try and give you jar food today. I hope you do well, that's one thing you really loved when you were at Traymore.

Love you!! xo Jen

February 4, 2010

2010-02-05T21:39:00.002-06:00

Johnny,

You had a better night but your still running fever.

Mom said that she's had the cuff on your trach deflated all day and you've tolerated that well.

I went to the doctor and I have a viral infection. Because I'm pregnant, there's not a lot of over the counter meds I can take and I'm not sick enough to have a prescription... So, I'm not going to be able to see you for a while. I don't want to take any chances with your health.

Love you!! xo Jen

February 3, 2010

2010-02-05T21:33:00.002-06:00

Johnny,

Well, you had a pretty good first night home. Mom said that you ran fever all night so, of course, she didn't get much sleep. I think it's probably like having a new born right now...you'll both fall into a routine. Diana came by today and gave you meds and your breathing treatment. She stayed with you while mom ran to the pharmacy for your other meds. I'm not sure how many your taking but it's a bunch.

Angels at home came to see you today, they are an organization that sends out nurses to check on your wounds, etc. They will be coming out once a week. They said that your wounds looked really good and were healing.

Rehab without walls came out to do Physical and Occupational therapy. They will be coming out 3 hours a day a few times a week.

I wanted to come see you so badly today but, I am sick. I'm not sure what I have but it feels like the flu, and that's the last thing you need!

Love you!! xo Jen

February 2, 2010

2010-02-05T21:16:00.006-06:00

Johnny,

Mom, Jackie and I got to Baylor at 9am to pick you up. It took us almost two hours to gather your stuff, do paperwork and say our goodbyes. It was bittersweet wheeling you across the parking lot. We got you into the van and strapped down and then we hit the highway. You tolerated the drive home. On the way home, we had to stop at two pharmacies for your many meds. By the time we got you home, you were wore out! Dad and Robert got you in the house and it was a task ( the ramps are not built yet) and then into bed. Mom and Diana checked your vitals, gave you a breathing treatment, fed you and gave you your meds. Jackie and I unloaded your stuff, organized your closet and put stuff away. You seemed tired but I noticed your mood seemed different. I didn't get the reaction I was looking for but it is hard for you with your brain injury to show emotion but you seemed aware that you were out of the hospital and in a familiar place although your room is new to us all. Well Johnny, as exciting as it is for you to be home, you have so much hard work ahead of you. You can't get discouraged...well, yes you can but you can't give up! God's not through with you yet! You need to thank Him and Praise Him by testifying how He saved you and until you can, I'll do it for you. God has been so good to our family! It's amazing how He has drawn us all closer together. We love you Johnny and this is just the beginning.
Now!! Roll-up your sleeves little brother, you have a lot of work to do!
Love you!! xo Jen

Packed up and ready to go...you sleep...

Jackie is giving you a suction for the road

Who's in charge here?

Heading home...

Not sure what that look is for

Giving us a smile - your left side is still a little weak

Picture is blurry but shows your room...wasn't mom clever with the hockey sticks

No words needed : )

February 1, 2010

2010-02-05T21:15:00.002-06:00

Johnny,

Everything is lined up...your coming home tomorrow.

Love you!! xo Jen

January 31, 2010

2010-02-01T19:41:00.003-06:00

Johnny,

Mom said when she got to your room you were red in the face and all on your arms. She said she thought maybe you had a shower because your clothes looked fresh. She gave you a haircut and a shave. Mom said that when she was done you kept putting your finger under your trach collar and you would grab her hand and put it up to your trach collar. Finally she realized you were telling her that your neck itched from the little hairs from your haircut getting in under your collar. She changed out the trach collar and you were fine. When she told me that story, I was amazed…you will find any way to communicate. I am so proud of you! Mom took you to the second floor to look at the fish. We decided you enjoy them so much that we should get you a fish tank for your room. Maybe we could find something like a DVD that is like a fish tank but without the clean up. I wonder if there’s something like that out there….

Love you!! Xo Jen

January 30, 2010

2010-02-01T19:40:00.003-06:00

Johnny,

Things are coming together at Mom’s…Your room is finished!! Your equipment is being delivered. Everything should be ready for your coming home day. I really think you are going to enjoy spending your time there recovering. We can’t wait to get you home where you belong, with your family!!

Love you!! Xo Jen

P.S. Update on your room:
Plumber came and finished all the pluming work. Your bathroom is beautiful!

January 29, 2010

2010-02-01T19:39:00.002-06:00

Johnny,

The company who is going to provide your food came by the hospital but didn’t bring anything to be taken home yet. They are going to have to make a second trip. They showed Diana how to work everything. Diana went to your therapies. She said you did very well.

Love you!! Xo Jen

P.S. Update on your room:
Robert got your flat screen hung on the wall in your room. It looks really good. The detail work has been done…touch up on the paint, knobs on the drawers, etc.

January 28, 2010

2010-02-01T19:38:00.001-06:00

Johnny,

You had a pretty good day today.

P.S. Update on your room:
Your room is very close to being finished. The tile guy came and did the tile work in the bathroom. The Plumber is supposed to come and put in the toilet, sink and faucets. It’s all coming together and really turned out very nice!

Love you!! Xo Jen

January 26 & 27, 2010

2010-02-01T19:37:00.008-06:00

Johnny,

When I got to your room today, you were still in bed. It was past time for group so I’m guessing you’re going to miss it. I got you put into your wheelchair and took you to PT with Craig and Chris. Craig put you on the mat today. He sat behind you and moved you from left to right and had you push and pull against him. You really weren’t very alert this morning so you did cooperate very well.

After the mat therapy, they put you in the standing chair. Chris and I worked with you there. You stood for about 30 minutes.

I asked you if you liked standing and you gave me thumbs up. When PT was over, I had them put you back in bed. Respiratory came in and gave you a breathing treatment and then you were out like a light.

*Justin with Universal Medical came in to meet with me about your respiratory equipment for home. He sent me home with a suction machine, a nebulizer and respiratory “stuff”. The whole time Justin was there, you slept.

Love you!! Xo Jen

January 27, 2010
Johnny,

Today is the weekly family meeting. We found out that you are being approved for an extended stay. Your release date is Tuesday, February 2nd. Your wounds are looking better and closing up. You received a new wheelchair. Your bed will be delivered to mom’s house on Monday. Mom said that you were very sleepy this morning and didn’t do too well in group today. Mom also said that when she walked into your room this morning you were sleeping; you woke up and turned your head to the right to look at Mom. That’s wonderful progress…shows us that you’re alert, aware of your surroundings and that the Botox is doing its job.

Love you!! Xo Jen

January 25, 2010

2010-02-01T19:29:00.002-06:00

Johnny,

You are supposed to go home today…. We’ll see. No news, so far.

Love you!! Xo Jen

January 24, 2010

2010-02-01T19:28:00.002-06:00

Johnny,

I gave you a close shave, cleaned your trach – it was nasty with dried gunk. Respiratory came in and gave you a breathing treatment. WE watched Practical Magic with your girl, Sandra Bullock. You at napped during the whole movie.

*Your bike is coming to my house today. We are going to take pictures of it and try to get it sold for you. It’s going to be terrible for me to walk past it every time I go into the house. I just don’t understand when I look at it and see no damage and then I look at you and see how much that accident has affected you. I just don’t understand!

*I painted the baby’s closet today, it’s a sage green. I’m planning on painting the room but I need to wait and find out if you’re having a baby niece or nephew.

Love you!! Xo Jen

January 23, 2010

2010-02-01T19:27:00.004-06:00

Johnny,

I helped put you in your wheelchair and we went out front for about 20 minutes today. You looked around and seemed to enjoy being outside. The birds were very active. We went to the 2nd floor next and you check out the fish. Then we sat on the 2nd floor balcony for about 20 minutes…until it started to sprinkle. You could see better over the railing when I set you more upright.

When we got back to your room, your nurse Rebekah fed you lunch through your g-tube and we changed the bandage on your elbow. About an hour later you were put back in bed. We watched a movie together. When I told you I was feeling the baby move, you touched my belly.

Love you!! Xo Jen

P.S. Update on your room:
Carpet is laid, walls are painted and trim is painted.

Your enjoying the weather out front

Watching the fish

Watching the birds on the 2nd floor balcony

Giving me a thumbs up

This is your bed, it helps to prevent bed sores

January 22, 2010

2010-02-01T19:26:00.001-06:00

Johnny,

*Equipment meeting at 10:00 am…Craig wants mom to attend. It’s regarding your wheelchair and PT equipment you’re going to need at home.

*Wound care meeting at 2pm. Mom and Diana attended to learn how to care for you present and future wounds.

Love you!! Xo Jen

January 21, 2010

2010-02-01T19:25:00.004-06:00

Johnny,
I went to therapy with you; Craig let me put you in the standing chair…with his help… by myself. I helped lift you and then I did the rest myself. You did so good and I must say, so did I : ) You stood for about 30 minutes.

Afterwards:
Chris – Did PT on your upper body and neck and then put you on the bike. You did very well! Then he put you back in bed and did your ankles and your feet. You feel asleep. I left.

Love you!! xo Jen

P.S. Update on your room:
Mickey & I took the cabinets he made for your closet to mom’s house…we had an ulterior motive, we wanted to see Cody. He’s been practically living with mom and Robert while working on your room when we got there; he was working with two men, spraying texture on the walls. The door-ways into the add-on have been cut through. Things are coming along really quickly.

January 20, 2010

2010-02-01T15:34:00.002-06:00

Johnny,

Family conference today: Mom and Diana attended the meeting. We’ve asked for an extension until February 2nd on your stay at Baylor because of your wounds and because your room isn’t quite finished. We won’t find out until your release date if you’ve been granted an extension from the generous insurance gods…that was sarcasm.

Speech therapy with Kristina: You would not wake up for speech. Kristina tried to get you to spell with magnetic letters but you would not stay awake long enough. She gave you some lemon swabs too but that’s about all you would allow.
Group therapy: Answered on question right but, wouldn’t wake up long enough to participate.

Physical therapy with Chris & Craig: You stood in the standing chair. Afterwards, bed. Respiratory came in for a breathing treatment.
Diana stayed for your afternoon therapies. She said you were more awake for those.

Love you!! Xo Jen

January 19, 2010

2010-02-01T15:30:00.004-06:00

Johnny,

When I got to your room you were in your wheelchair. Respiratory was suctioning you and then when they were done, I took you to group where you answered every question right. After group, we met up with Craig & Chris for PT. They put you in the chair that goes from sitting to standing. They call it the standing chair. Your blood pressure stayed about the same every time they took it. You stood for about 30 minutes and handled it really well. I took you back to your room and Chris came up to do your OT. He worked on your legs for 30 minutes and during your OT, respiratory came to do your breathing treatment and walked me through the process again. We both did great! I got you all situated in your bed and you relaxed until your next therapy session. It was hard to leave you, you weren’t asleep. You did wave bye to me though, when I left.

Love you!! xo Jen

January 18, 2010

2010-01-30T17:40:00.004-06:00

Johnny,

Jackie went to therapy with you today...she said it was cool seeing you on the tilt table. That was her first time going to therapy. Mom said that you spelled out "I want hot shower" with your magnetic letters.

You got botox in your next, left arm and right shoulder today. You handled it very well. The botox should help loosen up your neck muscles and help you to turn your head better. We've been told that it takes about 6 weeks for the full effect of the botox to set in. Jackie pushed you around the hospital today. You had a pretty good day.

Love you!! xo Jen

P.S. Update on your room:
Sheet rock is done. Next is tape & bed, texture, painting, tile work and carpet...
It's coming along.

January 17, 2010

2010-01-18T17:13:00.002-06:00

Johnny,

Mickey and I came to see you after church. You were sitting in your wheelchair so we took you outside to enjoy the sunshine. You pointed out squirrels and birds and an airplane that flew loudly over our heads. I reminded you that there was a time when you would shoot and eat squirrels. You just stared at me.

Your nurse told us that you could be leaving as early as tomorrow....WOW!!!

For Johnny's visitors, if you want to see Johnny, I would suggest calling Baylor first to make sure he's there or you can call the family, of course.

We are so looking forward to bringing you home Johnny, I know your wanting that too.

Love you!! xo Jen

January 16, 2010

2010-01-18T17:12:00.002-06:00

Johnny,

Mom and Jackie spent the day with you today. Mom shaved you. Jackie and Mom did your exercises. You had a good day.

Love you!! xo Jen

January 15, 2010

2010-01-15T16:12:00.002-06:00

Johnny,

One more item checked off the "bringing Johnny home" list. Mom picked up your Hoiyer Lift today. It's a lift used to lift you out of the bed and into the wheelchair or shower chair and can be used by one person. Very convenient!!

Mom said you shined again in group today. You impressed your therapist with all your correct answers about what hospital you are in and what city. You continue to amaze!

Mom and Craig took you down to the new van and put you into it to make sure everything was going to work and Craig figured out that your wheelchair doesn't have tie downs. So, needless to say, he's working on getting tie downs for your wheelchair.

Dad was on his way to see you but I haven't talked to him, mom did. He and I are playing phone tag so I don't know what amazing things you accomplished...I'll post when I hear from him.

Love you!! xo Jen

January 14, 2010

2010-01-15T16:02:00.002-06:00

Johnny,

Things are progressing to get you home. It's exciting and scary all at the same time. I can't wait to see your reaction as we pull into the drive way at home. Mom's house has gone through so many changes. I love spring and summer in the country, it's going to be so nice for you to be able to sit on your porch and enjoy the day.

Buddy came by today and said you were sitting in your room, in your wheelchair. You must have just come back from therapy.
Letter from Buddy:
Johnny,
Tammy & I came by today and it has been a while since we have made it. Things have been really crazy at work with the weather we have been having. You are sitting in your wheelchair as we walk in and look really good. You are very alert today. It is good to see you and I hear you are going home soon. I know you will continue to improve. Keep up the great job.
God Bless,
Tammy & Buddy

Mom worked with you today some on the puzzles I got you for Christmas. She said you did really well. You've always loved doing puzzles!

Take care! Love you!! xo Jen

January 13, 2010

2010-01-13T18:33:00.002-06:00

Johnny,

Dad visited with you today. Dad said that Julia had you scheduled for an hour today to fit you for some braces for you hands to help straighten out your fingers.

Mom spent a few hours at the car dealership...you are now the proud owner of a 2008 wheelchair accessible mini van. That's right Johnny, you own a mini van. It's really very pretty.

Love you little brother!! xo Jen

January 12, 2010

2010-01-13T18:02:00.003-06:00

Johnny,

I was able to go to therapy with you today. We started out in Group where you shined! You answered all questions correctly!!! Then it was off to see Craig. He put you on the tilt table and got you to 80 degrees. You tolerated it really well. I was shocked at how flat your feet got.

Chris was next and put you on a machine you've never been on before. You peddled yourself for about 43 seconds.

Bryan did your OT therapy today and you did not like it. I obviously was being too nice to you because Bryan said something about me being your wife...I said, I am his sister and that is just nasty! I'm going to have to tone-down my level of care so that never happens again. Nikki in respiratory therapy taught me how to put a breathing treatment tube together and how to give you a breathing treatment. She also taught me how to suction you and clean your trach...I played along because I already knew how to do that and have been for months. They are getting us prepared for when you go home in two weeks...or so. As I was leaving, mom was just getting there. She went to your swallow test with you. You didn't do so good but we are convinced it's because of the order they give you the food to test. They start off with liquids and if they started off with the solid, you could have time to use the chewing muscles before giving you something that will just slide down your throat. I'm just upset for you, you don't have too many simple pleasures and you really enjoy eating right now.

Love you Johnny!! xo Jen

January 11, 2010

2010-01-13T17:59:00.002-06:00

Johnny,

You did really good in therapy today.
Mom had a meeting with Rehab without walls. She's also looking for a wheelchair friendly handicap van for you. She test drove one to the parking lot where you are and wheeled you into it to see if you and your wheelchair would fit. Resourceful....that's all I can say!

Love you Johnny!! xo Jen

January 10, 2010

2010-01-13T17:47:00.003-06:00

Johnny,

Mickey and I came to see you after Church today. You were in your wheelchair because mom was going to take you to therapy but you really needed to be suctioned so she brought you back. You sounded much better after you had a breathing treatment. I got some really good pictures of you today.

I asked Johnny where the baby was and he pointed to my stomach.

Johnny pointing to the "peanut" charm bracelet

I told you to smile and you stuck out your tongue

Your sign for "I love you"

Wide-eyed & handsome

Love you Johnny!! xo Jen

January 9, 2010

2010-01-09T16:14:00.002-06:00

Johnny,

Today you got a shave. Mom and Jackie were there to see you get a gravity feeding. Mom exercised your right arm some. She said that your left ankle is very swollen...wonder why? Mom said that She and Jackie got you all situated and you fell right to sleep.

Love you!! xo Jen

January 8, 2010

2010-01-08T14:45:00.003-06:00

Johnny,

In therapy today, Julia put your hands in paraffin wax again and did some neck stretching. You went to group therapy and did very well...you responded to all the questions with either yes, no or I don't know.

Mom said that she worked with you on the post and beads and you really did good and you tried so hard to work with clothes pins but they were too big and it was difficult for you but the main thing is you tried and you seemed to want to do it.

Mom is meeting...probably as we speak...with the equipment guy about things we'll need once we get you home. I'll post about that meeting when I know more.

Love you!! xo Jen

Update:
Mom feels strongly that you've turned another corner. You are interested in what other people around you are doing. She said that you were paying a lot of attention to the other patients in group today. You also saw Chris, your OT therapist from across the room and you were watching him very intently. This is something you haven't done before.

Dad came in around 1pm today and you just stared at his jacket. He finally told you that it wasn't your jacket. You must have been studying it pretty hard. Dad took you to speech therapy and physical therapy and then they measured you in your wheelchair for a wheelchair to go home in. Dad said that since you were in the wheel chair already, he took you for a trip around the hospital.

Mom said that the spots on your back have turned into sores. I hope that it's not causing you discomfort!

Take care little brother! Love you!!

January 7, 2010

2010-01-08T14:41:00.002-06:00

Johnny,

Craig got you up on a standing frame today. It supports your legs and knees and they take you from a sitting position to a standing. The first time they did it, your blood pressure dropped but the last two times, it didn't drop as much. Your body has to get used to the up and down motion before your BP will stabilize and not change at all. These are the things that we all take for granted!

You are officially off the feeding tube...you still have it but your not being fed continuously. You'll be given what mom calls gravity feeding three times a day, breakfast-lunch-dinner. This will help your brain tell you when you are hungry and it will prepare you stomach for larger amounts of food rather then a continuous drip. This is a good thing!

Love you!! xo Jen

January 6, 2010

2010-01-08T14:38:00.002-06:00

Johnny,

You had your Family assessment meeting today and it was pretty much the same as last weeks. They will continue to have them every week while your there. You are listed officially as a Rancho 5. The equipment guy (therapy equipment) is coming out Friday to talk with mom about what your going to need. It's a little scary to think about you coming home but on the other hand, it's very exciting!! Craig told mom that he will be getting you up on the lift tomorrow.

Love you!! xo Jen

January 5, 2010

2010-01-08T14:22:00.002-06:00

Johnny,

I caught up with you today in your room just as you and mom were leaving for therapy. You first had group and all you wanted to do was sleep and cough. You actually got kicked out because you were disrupting the class. I had to remove myself from the room before that, I gag everytime you cough now...things will be better after the baby is born, I'll be able to help out more with yuck stuff.
From group, you met up with Craig and he put you on the tilt board. You tolerated it very well and were in a 70 degree position for a while. Mom and Craig were talking shop so I had some one on one with you. I told you I had my appointment with the high-risk doctor and you gave me a thumbs up. I told you what they were screening for and you gave me another thumbs up. You kept looking me in the eye so I know you understood and were trying to comfort me. Mom had a meeting with a lady about outside support and you slept through the whole thing. When she was done, she met me at my doctors appointment which was right up the road from you. She's amazing Johnny...I told her she didn't have to come but she did anyway. It was a comfort to have her there. All in all, you and I both had a great day.

Love you!! xo Jen

January 4, 2010

2010-01-04T14:40:00.002-06:00

Johnny,

You had therapy today. Neuro came first and then Craig took you to 70 degrees on the tilt board. That's really great! Chris in OT stretched you out and then it was back in bed. Mom said you were sound asleep after therapy.

You have a bruise on your spine caused by the belly band that they insist you wear to prevent you from messing with your feeding tube. Mom in no uncertain terms told them that the band would be removed and in fact removed it herself. She said that you don't need it, you don't mess with your feeding tube and you never have. Your so thin that anything pushing on your skin is going to cause skin break down. I think she took care of it and your on the mend.

Love you Johnny!! xo Jen

January 3, 2010

2010-01-04T14:37:00.003-06:00

Johnny,

Well, I tried to warn you! Mom came in to visit you today bound and determined! She taught you some hand gestures (not the bad ones, ha!) to communicate with. If your visiting with Johnny, here are the gestures he knows:

pointer finger to thumb = I love you
pointer finger to thumb out straight = no
thumbs up = yes
thumb & pointer finger to lips = hungry

We are hoping that you have a swallow test on Monday. You got a shower today. The nurse told mom that you always look so nice and clean cut. I told mom she should have told the nurse it's because you have people that love you!

Love you!! xo Jen

January 2, 2010

2010-01-04T14:33:00.002-06:00

Johnny,

Mom and Jackie came to visit and while they were there, I came too. We sat around and talked to you and you played with the magnetic letters but never really communicated. Jackie got a new cell phone so she was testing it out and you kept your eye on her. You didn't have any therapy because of the holiday and the weekend. I guess you were catching up on your sleep. I got news for you little brother...you'll be in for some tough therapy come Monday.

When we left, you were sawing logs....hmmm I wonder where that saying came from?!?

Love you!! xo Jen

January 1, 2010

2010-01-04T14:29:00.002-06:00

Johnny,

HAPPY NEW YEAR!!!

Mickey and I came to visit you this morning and you were sound asleep. You slept the whole time we were there. The nurse came in and scanned your bladder and you registered 568. She drained 535cc off your bladder and you just kept on sleeping.
We left a note for Dad and Diana when we left and later Diana told me that you slept the whole time they were there too. I did find out that Dr. Thomas came by and upped your baclofen pump so maybe that's the reason for your sleep pattern.

Love you!! xo Jen

December 31, 2009

2009-12-31T20:22:00.002-06:00

Johnny,

Happy New Years Eve!!

Mom and Jackie came to visit you today. Mom said that you were pretty much the same as yesterday. The nurse had to drain your bladder because you had over 500cc. Yesterday they had to drain it twice because you had 400cc and 653cc. I know that must contribute to how lethargic you are and it can't be comfortable.

Dr. Thomas came by again and filled your pump. He used a 4x concentrate dose so he won't have to fill it as often. Right now your pump is at 363 mg. Julia told mom that he is very happy with your left fingers. She waxed them again today. Mom said that your fingers are almost laying flat Karen talked to mom again today about Rehab without walls. Pray that bluecross/blueshield approves this when it comes time for that.

Mom shaved you and cleaned your ears and nose. She also trimmed your toenails which grossed Jackie out.

You seem so depressed, we are hoping that after your swallow test on Monday they will let you eat more...that seemed to be the highlight of your days at Traymore.

Love you Johnny!! xo Jen

P.S.
Johnny's Room Update:
You have a framed out room and a roof. I'll post pictures soon.

HAPPY NEW YEAR TO ALL!!

My prayer for each of you out there...I pray that if you don't have a relationship with Jesus, you seek Him. If you don't have a healthy relationship with your family,
take the time to repair it. Life is too short and if Johnny's accident has taught me anything, it is just how much I need Jesus and how much I love my brother. I know without a doubt that without Jesus' answered prayers, my brother would not be here. Happy New Year!! I look forward to seeing you or hearing from you in 2010!!
God Bless!!

December 30, 2009

2009-12-31T19:46:00.002-06:00

Johnny,

It was standing room only today in your room....Mom, Dad, Diana, and I. We all showed up to be apart of your assessment meeting.

Results of the meeting:
Dr. Thomas came yesterday and upped your baclofen pump. Said your calf incisions look beautiful. Will be adjusting level again tomorrow.

Kristina - Speech therapist:
Said you pointed to Dallas in response to where you were and you knew the year. She said you seemed more alert yesterday compared to the first two days she saw you. Today you are very sleepy. She is waiting to see your potential.

Dr. Chock -
I don't even want to put his report in here because frankly he doesn't know what he's talking about. That's my opinion! He visited with you for about 10 minutes today after you were given 10mg of hydrocodone and slept for several hours. You would wake up when your name was called but would go right back to sleep. He put you at a Rancho 3....idiot! You were a Rancho 3 when you were in the coma. He did agree to reevaluate you later today.

Craig - Physical therapist:
Going to leave casts on until Monday. He said you have no stretch in standing with cast but need to get used to standing. His main goal for you is to get you to 80%-85% on the tilt board. Right now you are at 60%. Once you master this goal, you will attempt sitting to standing. You still have soft tissue contractor that he's having to deal with.

Julia - Occupational/Physical therapist:
Main focus : Hands
She will be using hot pads and paraffin wax to loosen the hand muscles. Getting new splints soon. You tolerate your splints well. Hoping for functional movement to use spoon to feed yourself and toothbrush to brush teeth. You will be evaluated soon for another dose of botox.

Karen -
She works in the admittance office and deals with insurance. She said that your discharge date is January 25th...we are hoping that this date will be pushed back when you are evaluated again. Of course, Dr. Chock's Rancho number won't help our cause. She also talked to us about Rehab without walls...it's where therapists come out to the house for therapies 15-20 hours per week. This will be a real blessing once your home.

After the meeting, we all went to your therapy and watched you stand on the tilt board. I got it on video and plan to upload the video on the blog as soon as I figure it out. You also had therapy with Julia and she dipped your hands in paraffin wax. Then you had therapy with Kristina and she gave you orange juice and apple sauce.

By the time you got back to your room, you were so tired you fell right to sleep.

Love you!! xo Jen

December 29, 2009

2009-12-29T15:08:00.002-06:00

Johnny,

You were seen today....
Jennifer Kids and Cooper saw you sitting in your wheel chair out in the hall. They stood near you for about a minute when someone came up and started talking to you. They said you looked tired. You had been to physical therapy. Jennifer said the next time she saw you, you were sleeping. You must have had a hard work out.

It's snowing at my house as I type this. What a beautiful mess! Cody just got his truck back from the Christmas Eve snowing. He was driving to Cedar Hill and the car in front of him started spinning so he changed lanes to avoid hitting it and caught some ice and went right into the guard rail. He took his truck to a little hole in the wall body shop near our house and the guy fixed it for cheap in less than 24 hours. He picked it up today and then headed to mom's house...I was a nervous wreck waiting for him to call and tell me he made it okay. I guess you never stop worrying about your children! Mom still worries about you.

Love you!! xo Jen

P.S.
Johnny's Room update:
Framers came out this morning...mom said she heard them at 7:15am. I wonder how far they got before the weather was unbearable.

December 28, 2009

2009-12-29T14:57:00.002-06:00

Johnny,

Mom came in to find both your legs in casts up to your knees. Only your toes were peeking out at the bottom. It was a little upsetting for her to find you that way, not knowing that they were going to do that. But, it didn't seem to both you at all. Mom and I both signed your cast.

I came by with my friend Jennifer and her son Cooper. Jennifer's dad is at the same place you are only he's on the 4th floor. We visited for a couple of hours, me with you and her with her dad....that didn't sound like the proper grammar...oh well. You seemed very tired, your cuff is still inflated on your trach which prevents you from talking. I'm sure that wears you out because you keep trying to breath through your mouth but are unable to. You look pretty comfortable considering you have both legs in casts.

The weather is suppose to be bad tomorrow, if I drive in it, I'll come see you...if not, I'm glad I saw you today.

We held hands and watched TV for a long time, you were in and out of sleep. When I left, you were dozing.

Love you!! xo Jen

P.S.
Johnny's Room Update:
Lumber was delivered today...the foundation post things were done a few days ago so the framing is about to get started on your new area. It's so exciting!!! Your almost home : )

December 27, 2009

2009-12-29T10:55:00.002-06:00

Johnny,

Mom and Jackie came to visit and right behind them were Doug, Della, Taylor, Ashley and Allie. Mom said that Della asked you what her name was and you said "Ella"...close enough! You had trouble with the D. Mom said that the respiratory doctor came in and deflated your cuff, that's why you were able to talk. When you saw Allie, you motioned for her to come closer...you waved at her and blew her kisses. You've always taken to Allie, since she was a baby. Mom was wondering if you remembered her or if you saw Jackie as a little girl in her. Either way, you were precious!

Mom said that your ankles weren't propped up and were swollen when she got there, you weren't complaining but she propped them up anyway.

When everyone left, you were sound asleep.

Love you!! xo Jen

December 26, 2009

2009-12-29T10:51:00.002-06:00

Johnny,

Physical therapy came in today and put you on the tilt board. While up there, they took your blood pressure and it remained good. Then they put you in the wheel chair and took your blood pressure and it remained good. The nurse said you did really good. You slept for most of the day after that.

Love you!! xo Jen

P.S. Sorry it's been a while since I updated the blog....my internet hasn't been working but I'm able to update today because a friend brought me her laptop w/ wireless anywhere internet...pretty cool!

December 25, 2009

2009-12-29T10:42:00.002-06:00

Johnny,

CHRISTMAS DAY!!!

It's Christmas morning and I think we all feel your absence. Jackie and Cody woke up and we opened gifts. You got Jackie a beautiful silver heart necklace that she can put a picture of the both of you in. She really loved it! You also got her another necklace that says I Love You on it. You got her some clothes and shoes and "girl stuff". She had a great Christmas Johnny....but, you were missed : (

After Christmas lunch, mom, Jackie and I headed to the hospital to see you. You opened the gifts we got you with Jackie's help. You seem very sleepy...lethargic. We think it's because they have the cuff on your trach inflated. Your unable to talk or even breath out of your mouth. I think it must make you tired.

Dad and Diana came to see you early this morning and Dad said that they had a good visit. Diana brought you some presents, a pair of sleep pants and some really nice soft socks.

Jessica's church made you a prayer quilt and when we got there, you were using it.

Buddy and his son came up to see you while Dad and Diana were there. You had a lot of visitors today, it's no wonder you were sleepy when we got there.

Take Care Johnny! Love you!! xo Jen

December 24, 2009

2009-12-29T10:33:00.002-06:00

Johnny,

It's Christmas Eve...

You had a test for blood clots today at 1pm. The test came back negative...they found no blood clots. Mom shaved you today. Valerie came to visit. You slept most of the day.

Mom said that you got a new bed today, it's a air pulsating bed that blows beads around on the inside. It's going to do wonders for your bed sore. It has an adjustable temperature on it.

Love you!! xo Jen

December 23, 2009

2009-12-23T21:47:00.002-06:00

Johnny,

Ambulance arrived to pick you up at Traymore at 6:30am
You arrived at Texas Institute of Surgery at 7:30am
Your surgery started at 9:00am
Your surgery was over at 10:15am
You were in recover for about 2 hours and then the ambulance was called
You left the surgery center at 12:50pm and arrived at Baylor a little after 1pm

Mom, Jackie and I saw you before you surgery and you were calm. You were complaining a little about the light being bright, you wanted us to turn it off. The anesthesiologist got you all IV'd up and rolled you into surgery. I was really
impressed at how together they were. Mom, Jackie and I were in the cafeteria when Dad and Diana arrived. Mom and I had a bet about how long the surgery would be. She said an hour. I said an hour per leg. It took an hour and 15 minutes. When we got buzzed (they gave us a beeper) that you were out of surgery, the doctor came out to talk to us and he was grinning from ear to ear. He said the surgery went well. It was a success! He said that he didn't cast your feet because he was able to release the tendons enough that you didn't need the casts to hold the position. I am so excited to see you progress!!

When you arrived at Baylor, they weighed you and you gained some weight : ) You weigh 114.3 lbs. Have you been sneaking some midnight snacks? Ha! Jackie and I left after you got some what settled in. Mom, Dad and Diana stayed. And then eventually it was just mom. I'm not sure what time she left but she sent me an email because her phone was on the charger...here it is:

Johnny is all settled in. I went by Traymore and got a ton of meds. I
couldn't believe how many different ones there are for anxiety and insomnia.
When I left the nurse was turning him and was going to give him a bed bath,
etc. He watched a little of Wyatt Earp and then lost interest.
Tell Cody thanks for helping out today. I really appreciate all the great
work he did around here this last week. He is so special to me!!
I am charging my phone now so talk to you tomorrow! Goodnight Peanut -
Granny loves you.
Oh yeah, Cody and Jackie are cute too..............

Mom is talking about the work Cody's been doing to get ready for the room add on. They came out a few days ago and poured the .... I can't remember what they are called ... for the foundation. Anyway, they are getting started and it won't be long until you have a room to come home to that will be comfortable for you and have everything that you need.

Want to hear some Mickey and Jennifer trivia...
20 years ago today at around 10pm, Mickey and I met.

Love you Johnny! You did really good today!! xo Jen

December 22, 2009

2009-12-23T21:06:00.003-06:00

Johnny,

Well, tomorrow is your big day. I came to visit you today and even before I walked in I could hear you moaning from the hallway. I'm not sure what you had to say but when I came in you stopped. I said my hellos and then I asked you if you wanted to eat. You said "eat". So, I fed you some blueberry with apples and some Dr. Pepper. You did really good with the food and ate it pretty quick but you kept spitting out the coke. I tried several times but gave up. Next we worked on exercising your arms and legs. You complained the whole time! I have to say it was a real issue for me to lean over the bed and although you got a good work out, I'm not sure it was as thorough as mom gives you. It wore us both out! You fell asleep pretty quick afterwards. I started packing up your room...I didn't want mom to have to do it by herself. I know I interrupted your sleeping because you kept opening your eyes to see what I was doing. It took me 5 trips to the car to carry all your stuff out. Now tell me, how does one person collect so much stuff? When I finally got everything loaded, I had to rest so I read to you the Christmas cards that Aunt Donna and Leroy sent you. You were so sweet, Aunt Donna's card played music and I read you the card and we played the music and then you took the card up to your lips and kissed it. I had my camera so I asked you to do it again so I could take a picture and you did. When I read Leroy's to you, you held it and stared at it and then gave it a kiss too. I love how sweet you are! Well, get some rest...you have a big day tomorrow.

Love you!! xo Jen

December 21, 2009

2009-12-21T20:19:00.003-06:00

Johnny,

Well, you are all set for you surgery on Wednesday. We don't have a time yet but everything is in place. You have no idea what's going to happen to you but it's really going to help speed your recovery along. Tomorrow should be your last night at Traymore. They have been really good to you. I know they are going to miss you!

Love you!! xo Jen

P.S. Mickey and I went to the doctor today and our baby is 2 inches long. Isn't that cool! The baby was dancing around in my belly like it was doing water ballet. My doctor said that the baby is doing really good and the chance for miscarriage at this stage is very slim. I think I told you that there is a clot in my uterus near the baby and it was something to be concerned about but the bigger the baby gets the less chance of the clot effect things. So, this is a good thing and we are on cloud nine!!