Thursday, October 29, 2009

October 29, 2009


Well, your on the move again. Mom said that the ambulance picked you up around 11:30am and by 1:00pm you were all settled in at Traymore. I don't know a whole lot about Traymore but Mom seems to think it's a good place so that's good.


You are always agitated when you move and today was no different. I think the moving around loosens the phlegm because you were raspy. Mom said that they gave you breathing treatment and suctioned you and you seemed better. I always fear the pneumonia will return when you start having the congestion.

The hospital ordered your air mattress and mom said that it was there before she left. That will help you rest better without having to be rotated every two hours. I hate that you can't have constant consistency...the moving is very upsetting for everyone. Especially mom...she worries about you, about training the nurses on your likes and dislikes, about the doctors messing with your medication. It's just hard and I know it's no picnic for you. I just pray that your able to sleep tonight.

You've really been trying to communicate and you get so frustrated when we can't understand what your trying to say. We've tried talking, we've tried writing...some of it works but you always end up getting frustrated. Mom bought you a magnetic board that has alphabet letters on it. She said that tonight you spelled "by" for bye and "hi" for hi. That's pretty good!

I love you Johnny and I'm praying that you get the baclofen pump soon and can go back to Baylor for your therapy!!

Love you! Love you!! xo Jen

Pictures of the 27th...

Johnny enjoying the's been raining a lot in Texas!!!

Johnny & Jennifer (Johnny's smiling and check out his thumbs up!)

Johnny writing

This is what you wrote when you were asked what year it is...

more writing

your concentrating

Johnny after a hard day of therapy

On the Road Again....

The Traymore
7602 Culcourt Drive
Dallas, TX 75209
(877) 572-1852

Lemmon Avenue North
Just past Sewell Cadillac - stay in right lane
Bluffview - right
Hopkins/Culcourt - right
Facility is on the left

Nursing Care Features

24 Hour Nursing
Diabetic Care
Early Stage / Mild Alzheimer's Care
IV Therapy
Incontinence Care
Laboratory Services
Medicare Accepted
Middle Stage / Moderate Alzheimer's Care
Number of Meals Provided: Three, plus snacks
Orthopedic disorders / Post Amputation
Pharmacy Services
Physical, Occupation and Therapist on-site 7 days / wk
Special Diet Accommodations
Therapeutic Care
Tube Feedings
Wound Care
X-ray Services

Room Features

Air Conditioning
Cable Hook-up
Emergency Call System
Furnished Units
Individual Climate Control
Private Bathrooms
Private Rooms
Wheelchair Access

Welcome to The Traymore The TRAYMORE is a very special healthcare facility. We are dedicated to providing the finest care and service in a warm residential setting. Each resident receives our personal attention. Attention to the details that make life more comfortable and focus on the unique needs of each resident.

Our commitment to care for the details is evident throughout. You will see it the minute you step into the inviting reception area. You will see that the residents are attractively dressed. You will be delighted with the way the staff welcomes family members who visit often, how the staff understands their concerns. Most of all you will appreciate the way the staff members care for each resident with dignity, respect and attention to special needs.

The TRAYMORE provides nursing care (according to need) ranging from custodial to intermediate to skilled care and acute specialties. Nursing services are coordinated by our Director of Nurses, an R.N., and are under the direction of our staff Medical Director, attending doctor or each resident's personal physician. Licensed nurses are on duty at all times, and our high staff-to-patient ratio allows us to closely attend each resident's needs. A Registered Dietician advises on preparation of all meals. Special diets and between meal snacks are routinely provided. We have an excellent Therapy staff onsite 7 days/week. We discharge 85 to 90% of our short-term residents, back home to their prior function after completing their therapy goals.

The TRAYMORE'S fine reputation is based on two major assets: tenured and experienced staff and a beautiful facility. We are centrally located to major hospitals. Our location near Park Cities means you can visit every day or take your loved one to church, nearby restaurants and shopping. Our small size allows us to pamper each resident just as you would at home. The staff knows each resident well enough to understand particular needs. The dining room is spacious and cheerful (served restaurant-style). The kitchen is well known for exceptional food.

We invite you to visit the Traymore and experience our friendly staff and pleasant atmosphere. A manager is on duty seven days a week for a tour.

October 28, 2009


We found out that in order for you to get an appointment with the doctor that installs the baclofen pump, you have to have a referral and a letter of medical necessity from your primary doctor. Mom called Dr. John, your primary doctor, and he said that he needed to see you...bummer! You had to travel over an hour there and over an hour back. If was very traumatic for you. Mom said that she had to hold your head because the head rest on your wheel chair doesn't secure your head. By the time you got back to Baylor, you were exhausted! We still haven't heard from insurance as to when you'll be moving. I say take your time insurance!

Love you Johnny!! xo Jen

Tuesday, October 27, 2009

October 27, 2009


Well, sit down...I've got a lot to tell you!!

Mom called me at 8:30ish and told me to call her as soon as I got to your room. She wanted to know if you had an IV. Well, I was in Midlothian when she called and by the time I got to Dallas, she was standing in the parking lot waiting on me. I just laughed! That's so mom! We got to your room and you weren't there. You were in NP therapy. There were two other people in there, a young girl with TBI who had been in a car accident and an older man who had a stroke and was having memory and speech problems. Your therapist would ask you each the same question and each person would answer in their own way. You answered correctly every time. She asked you what day, month and year it was. She asked what hospital, city and state you were in. She asked what time of day it was and you said morning. You knew it was fall. It's really very amazing!

After your NP therapy, you had an appointment with the opthomologist, Dr. Carmen. She's a neurological opthomologist. She said that your right eye has great vision for near and far. You saw every letter accurately. Your left eye, has cranial nerve damage to nerve 3. This nerve controls eyelid control, up and down movement as well as focus. She said that you have blurred focus and you can't move your eye to the left...that's nerve 6. She said that because you can partially open your left eyelid, it could mean that the nerve is trying to heal itself. But, because that nerve controls so many things, it could possibly heal one part while leaving the other parts damaged. If this happens, she said that you would have to wear an eye patch on your left eye because you could possibly have double vision and she said that would drive you nuts! All in all, it was a good visit!

I was sitting with you in the therapy room, waiting on Chris when Cindy came and sat down next to us and we were talking and I realized that your schedule was for yesterday and that you actually had a meeting with Cindy. Woops! Cindy suggested we go outside and have your session. I went up to your room to get you a blanket because it was chilly and then I met y'all down stairs. Cindy was asking you all kinds of questions and you were answering her but you seemed really tired. She was asking you a question and you put your hand up like you were writing and I said I think he wants to write. She gave you a piece of paper and a pen and then asked you what year it was. You wrote 2009...actually you added some zeros but your two and nine were perfect! Cindy asked me if you like to write and I said oh yes, Johnny is a journaler. Mom found tons of full journals when we were packing up your house. Anyway, Cindy said Johnny we need to come up with a gesture you can use to tell people that you want to write. When she said that, you put your hand up in the air and acted like you were writing. Cindy said, well, that will definitely work! We both laughed! After your session was over, I took you back upstairs, got your respiratory doctor to help me get you in bed and then he set up your breathing treatment. While you were doing your breathing treatment, you started using your new gesture, telling me you wanted to write. I gave you a piece of paper and couldn't find a pen. The only one I had was one that you push the end and the pen comes out and you push it again and it goes in. I showed you how it worked and gave it to you with the pen closed. You took it in your hand like you were going to write with it and then put it up to your chin and pressed it against your chin to open the pen. WOW! I got tears in my eyes! You wrote on the paper for about two minutes or so and I asked you what you were writing...I couldn't read it. You said what I thought was my name and I asked you if you wrote Jennifer and you said J, E, N, C, K. That's what it sounded like you said, it might have been something else entirely, and it probably was because you got frustrated with me and clicked that pen on the paper, closing it and then set the pen down. You were done. Ha! Your treatment lasted about 10 minutes and you were done. I rubbed your head until you were asleep which didn't take long, you were already very tired. Then I left.

Mom said that she heard from Texas Specialty and that they feel like the insurance company was in favor of you being sent to Texas Specialty...which is our first choice! But, they haven't heard for sure. Mom said she would call as soon as she heard something.

More to come....will update when I have more info.....

Well, insurance said no to Texas Specialty : ( bummer! But, our second choice said yes and insurance is suppose to get back to them with an approval in the next 24 to 48hours. You are on the schedule for therapy tomorrow.

I love you!! xo Jen

October 26, 2009


We have not heard anything from the insurance regarding your move. Mom felt sure we'd hear something today...I guess no news is good news. No decision on you having surgery on your feet today either.

Mom and Diana were visiting you this afternoon when the nurse was trying to take your blood. She was having a really hard time and when she finally got it, your blood was very thick and dark. Diana said she felt like that was a sign of dehydration. The nurse agreed. We are hoping this is God intervening, if you have an IV, you will have to go to an acute care facility.

Diana told mom that she was singing "you are my sunshine" to you and you were trying to sing along. She said that when she got to the part in the song that says, "you'll never know dear, how much I love you", you pointed at her. She started to cry. She said that you looked at her like...what are you crying for...ha! That's so sweet!!

Love you Johnny! XO Jen

Monday, October 26, 2009

Special Request

If you feel lead to reach out to Johnny or Jackie through correspondence, I know that Jackie would love to hear from you and would love to read your letters or cards to Johnny.

Johnny Holub
c/o Jennifer Smith
6050 Crest Drive
Midlothian, Texas 76065

Jackie Holub
c/o Jennifer Smith
6050 Crest Drive
Midlothian, Texas 76065

Thank you in advance for your kindness!!

October 25, 2009


Mom and Robert came to visit with you after church. Mom said that you seem sad. I wonder if your realizing things are different and it's got you down. It's so hard for us knowing that there are times when your alone. You are making such good progress, we are so proud of you!!! We are praying that insurance comes through. We are praying God's will. We are praying, we are praying!!!

In times of need, find comfort in Christ!

John 14:27
Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

Psalm 46:10
Be still, and know that I am God.

Psalm 46:1
God is our refuge and strength, a very present help in trouble.

Love you Johnny!! XO Jen

October 24, 2009

***Enjoy the LITTLE things. One day you may look back and realize...they were the BIG things!!!


Jackie and I came to visit you. You seemed so tired. The nurse had the TV on and it was on some elevator music so I asked you if you wanted to watch something different. You gave me a thumbs up. I told you to give me a thumbs up if you saw something you wanted to watch. When I got to scooby-doo, you gave me a thumbs up. I don't know if you did that for yourself or more for Jackie who was standing next to you. You and Jackie watched scooby-doo for a while until you became tired and closed your eyes. We turned the TV off after that.

I brought you a stick with a hand on the end of it, it's pointing. I thought you would like to use that until you had more range of motion with your arms. We asked you yes or no questions and you pointed to yes or no with the pointer stick. Then you would point to my nose, ear, mouth, etc...I think you were trying to irritate me! Ha!

I have a friend who's Dad is in the ICU across the street so we took a break to go over there and visit and then we brought Cooper, her son, back with us. We took a break because Jackie got a glimpse of your side and it broke her heart, she couldn't stop crying. She said that you've gotten so skinny. She's right, but I'm used to it...she's not. When we came back with Cooper, I said Johnny this is Cooper and you said, Hiiii Cooooper. It was so sweet! Cooper said, hi his shy voice.

We didn't stay long the second visit, I didn't want them to run us out for not following the age rule but Cooper and I did step out and give you and Jackie some time. She had her face inches from yours and was talking to you...that's the first time she's done that and I didn't want to rush her.

Love you Johnny!!! xo Jen

October 23, 2009


Cindy, your NP therapist, said that you did well at your am session with her. She said that you knew the date and year. You followed her around the room with your eyes and you noticed other people that were in the room as well.

Julia, your OT, recasted your left arm 10% more. She said that you didn't register any pain when she recasted you. She also told mom that insurance denied the braces she was ordering for you for your arms. She went to battle for you though. She said if they deny the claim again, she's got a back up plan to make some braces herself. She will recast you again Monday.

You had a CT scan and it showed a little encephalitis caused by the shearing of the nerve ends in your brain. They said that encephalitis can cause spasticity...which you definitely have. They need to compare these CT scans to the previous CT scans to see if there has been change or if it's the same. We know how long that takes...huh!

Mom said your trying so hard to talk but it's difficult to understand you.

The case worker from Texas Specialty is suppose to come and evaluate you. They are going to try hard to get the insurance to approve you going back to them for 4 weeks while we wait on the pump to arrive. Mom said Diana keeps trying to figure out how to get it sooner.

You talked to Jackie on the phone this afternoon. You told her hi and that you love her.

Your suppose to have your catheter taken out tonight. This will help with UTI's.
You have a 10am appointment with an opthomologist...I can not wait to hear what he says!! Mom said that after the appointment they will move where? That's up in the air! We have a back up plan if TX Specialty falls through.

You could possibly have foot surgery on Monday as well....we'll see.

Love you!! xo Jen

Hi Jennifer,

Great pictures of Johnny. He looks like he is resting.
Sounds like progress is coming along. I know it is not as
quick as all of us would like but progress still the same.
I know I have told you a few times how proud I am of you,
your mother and the whole family out there but I am amazed
on how well you all are holding up, it is important for Johnny.
I Love you Jennifer, give everyone my Love and tell them I am
Praying for all of you.

Your Cousin,


Thursday, October 22, 2009

October 22, 2009


Cody and I came to see you this morning. You were all ready for physical therapy and waiting for Craig to get there. I asked you if you wanted ice chips or a pen and paper and you said write. You tried really hard to make a circle.

I started giving you ice chips when you got frustrated with writing. You swallowed real good between each one. Craig came to get you for PT and Cody and I were able to go along to help. Craig is so patient to explain everything he's doing and why. He put you on the tilt board and you tolerated it very well! Their tilt board is electronic.

This is Cody and Craig getting the tilt board ready for you.

Your at 35 degree angle, you tolerated it so well that Craig bumped it up.

Your at a 45 degree angle here and you stayed in this position for about 5 minutes or so. You did really kept feeling the straps that held you in. I think you were just curious because they weren't tight at all.

When Craig was done with you, Carrie in Speech came looking for you. She gave you ice chips and worked on swallowing, you did super! Then she worked on opposites with you. She said boy - you said girl. She said bacon - you said egg. She said up - you said down. She said left - you said right. She said cat - you said bandit. WHAT? (Cody and I start to laugh) She said cat (again) - you said bandit (again) Cody and I laughed (again). Carrie looks at us with a puzzled look and we say, bandit is the name of your dog. That's pretty smart Johnny! Mom came in during speech therapy and when you saw her you said hi mom. It's so sweet when you look at mom, you can tell you love her. Carrie gave you really thick apple juice and you swallowed it really good. She gave you two spoonfuls and when she asked you if you wanted more, you said no. Carrie asked you what your name is and you said Johnny Holub, the best you could but you could definitely tell what you were saying. She asked you to count to five and you said onetwothreefourfive all in one breath and so fast it made us all laugh. Then she asked you to say 1-10 and you said onetwothreefourfiveblahblahblahblahten...the blah's I couldn't make out but I'm sure it was 6-9! Because your smart like that!

Chris came for you after speech, it was time for your occupational therapy. He worked your arms, hands and head. You do not like it when he messes with your fingers on the left hand. You kept trying to pinch at him. Cody ended up holding your right hand while he worked on your left. But, you had revenge in your heart and when Chris switched hands and started working on your right arm up high, you took your fingers and pinched him under the arm...your evil plot worked. That man let out a yelp and then his face looked just like the faces he makes you make...ha! You are doing really good though, your always a little more loose when you leave from seeing him. Loose and tired! After we left Chris, we were put in the transport line. That's where patients in wheelchairs line up for workers to come get them and take them back to their rooms. We could have taken you our selves and have on several occasions but, they said that the workers would help put you in bed so we didn't argue, we waited. While we were waiting, conversation turned to your hair and how your in need of a haircut. Mom said she was going to cut it or maybe let it grow some and just trim it but Cody suggested a Mohawk. You didn't have an opinion and my thinking is, you better get an opinion or else you'll be sporting a Mohawk...just because it would be really funny!

When we got back to your room, Mr. don't talk to the family because I'm too busy cutting up with my friends worker man helped get you in bed and then left. We got you all situated for your long snooze before your swallow test at 2:00 and in comes respiratory. It was time for your breathing treatment. You have breathing treatments four times a day. It must be working, you sound really clear...not raspy like before.

After your breathing treatment, you were ready for bed. Cody and I left so you could get some sleep. We sure did enjoy our visit with you today!!

Mom said that they did the swallow's what they found:
You do really well with thick stuff and liquid stuff tends to go the wrong way.

She said that they were going to try some food next week. Bless mom's heart, she said, if he's still here. Your only approved through Tues. the makes it hard to plan.

They x-rayed your jaw where you have been pointing to the pain. We will find out tomorrow what's going on with that.

Julia took off your cast. She's going to let your arm rest tonight and do the recasting tomorrow morning. Mom said that it seemed to work because your not drawing that arm up to your neck.

While mom was giving me an update on the phone, Diana came in to visit with you.

Mom called back at 4pm so you could talk to Jackie after school. Jackie had you on speaker phone. She said, hi daddy. You said hey Jax. She said, I love you and you said I la yu. She said bye daddy. You said bye Ja E. I know you miss her Johnny and it's got to be really hard to be away from her. I want you to know that she's really doing well. I don't want you to worry about her if you can help it.

Love you so much! xo Jen

Hi Nancy and Jennifer!

I am glad to see a good time was had at the Miley Cyrus concert. Thanks for the “shout out” on the blog!

I have been running around with the Walking with Dinosaurs show I keep forgetting to email, but I have an autographed poster by Miley (it is actually for the show in Oklahoma, but it is autographed by her) I got from the show for Jackie. They actually heard me talking about Johnny to one of our guest service staff that asked about him and thought how great it was she was doing so well in school, etc… they gave me the poster for her.

Let me know the best way to get it to you all. Please tell Johnny hi for me! We are thinking of him!

Stephanie Myers

Hi Jennifer, It's Melinda, Johnny's friend from the AAC, I met you at Parkland before your trip to Florida, way back when the accident first happened, I took Jack in The Box. I've been keeping up with his progress thru the Blog. I'm so glad he's doing well. I do apologize that I haven't been able to go see him. The last time was when he was on Westmorland and Keist. Well if all possible and if he's taking visitors I'd like to go and see him but I'd want to make sure it was ok first, if so I'd like to go before the 27th so I can be sure that I can find him and Need the correct info it possible. If not I completely understand and I will keep up thru the Blog. He looks amazing and seems to be doing a really wonderful job. I'll keep you guys in my prayers, and keep me posted about the visit. you can email me at work which is easier for me to get the info at again thank you.

October 21, 2009


Well, there is a weekly family meeting scheduled for today. Mom and Diana attended. They found out that you are approved to be at Baylor until the 27th. Insurance gives their approval out a little at a time...why would they want to give the family piece of mind...(that was sarcasm) Please pray that Johnny gets to continue his rehab at Baylor as long as he can. I know God's in control, but it certainly doesn't hurt telling him what we want : )

Your approved for the pump, we just have to wait 5 WEEKS!!! for you appointment. Something about ordering the pump, etc. Sounds ridiculous to me but, well waiting is not my strong point!
Your going to have surgery on your legs right after you get the pump. They are going to lengthen your Achilles tendons. What has happened to cause this to need to be done is that the brain trauma that you suffered causes posturing and spasticity. The posturing and spasticity caused, what they call, foot drop. That's sort of like when you get a foot cramp and your toes point downward...only 24/7. Or you might compare your feet to that of a ballerina's. Overtime, the foot stays like that. The good thing is, this is fixable. The bad thing is, it's going to hurt. They will do the surgery and then cast your feet. They will do the serial casting on your feet just like the serial casting they are doing on your left arm. It's a lot of work Johnny but your tough and I know you'll do just fine!! Back to my original point, the doctors are going to wait for you to get the pump first so that they can take advantage of you being more relaxed. They feel if they do the surgery and casting now and you don't have the pump that your feet could go back the same and it would have been all for not.

You had a CT scan this morning but we don't know the results yet.

Diana asked you a question and your response to her was yea. Plain as day!
Your LVN told mom that you were singing this morning. They couldn't make out the song but you were singing. It makes me think you must be happy. And, that makes me happy!
Ms. Ruthie said that your playing possum with your speech therapist. When she turns her back, you open your eyes and check out what's going on but when she faces you, you act like your asleep...sounds like you!

Cindy your NP said you weren't as awake today during your therapy with her as the day before but she did tell us that your a 5 on the Rancho scale. I blogged about the Rancho scale a few posts back.

Your x-ray on your feet and ankles and knees showed no bone growth...that's really good!

Your suppose to have an x-ray swallow test tomorrow to see how your swallowing is coming along. We have the okay to give you ice chips, we just have to make sure your sitting up and that you swallow a few times between the chips.

Mom asked you if you wanted to talk or rest and you said rest...I think that's funny! You've never really been a talker!

Mom said also that she asked you if your jaw hurt and you said, "a little bit".

I'm very proud of you Johnny! I love you!! xo Jen

Wednesday, October 21, 2009

October 20, 2009


**When the most terrible thing that can happen already has, the most simple things become the things we celebrate**

I got to your room at 9:30am this morning. You were in the middle of speech therapy and I was able to watch that. You were doing really good and responding to commands. At 10am the wheelchair came for you to take you to NP therapy (days, weeks, months, year therapy). There was another patient in your therapy session today, her name is Sara. You answered the questions accurately. You knew you were in Baylor, you knew you were in Dallas, you knew it was 2009. The only thing you were stumped on was that it was October. I am very proud of you!! At 10:30am Craig, your physical therapist, came for you. He worked with your legs a bit. During this time, mom came in. at 11am your speech girls came after you again and took you to there office where they worked on swallow control. You did super! And then at 11:30 Chris with OT, occupational therapy, came and took you to the therapy room and worked with your arms. He moved both of them every which way and you did really good. Mom and I feel like maybe it's all loose from the day before. Mickey came during this therapy time and stayed for about 30 minutes. He had to get back to work. He was really impressed when you shook his hand. He's been really worried about you Johnny, I think that's what he needed to see. Right after Mickey left, Buddy showed up. He got to see you work with Chris and then your NP therapist came after you. It was around noon. She took you outside and you really seemed to enjoy that. She had you make a fist for yes and an open hand for no, then she asked you a series of questions. You did so good, it was so exciting to see!! We took you upstairs after that, you had until 2:30pm to rest before they came after you again. Your respiratory doctor was there and gave you a breathing treatment and then we got you in bed and all tucked in. I had to leave by then and mom went to get something to eat. You were very relaxed...wore out really! See pictures below of therapy today:

Johnny sporting his new cast. Not sure what the face is about. Isn't he handsome in his new shirt?

Your having therapy with Chris your occupational therapist

Your saying hello to Mickey

Your telling Chris to stop it!!!

Your outside with Buddy, Mom, Jen and your NP therapist...just talking and enjoying the weather.

Your answering no to a question

You are listening intently

Your NP showing you a timeline of what has happened since your accident. When you were asked if you were in a car accident or a motorcycle accident, you said motorcycle.

Your finally in bed

...and he sleeps...

Mom was showing you pictures on your electric picture frame. Every time Jackie's picture would come up, you would say Ja E. When your picture came up, you would say "me". You said Mi E when Mickey's picture came up. Mom said that you tried to say Jennifer but couldn't quite get it.

Mom asked you where do you hurt two times and both times you pointed to your jaw. Your right jaw is swollen...she's getting a doctor to look at it.

Mom said that maintenance came into your room and changed out your TV, it's not been working. You watched them like you were very interested in what they were doing. Mom said that you were probably thinking they were doing it wrong! Ha!

Mom said that you were saying momma, momma, momma...she realized that she was out of your sight and you were trying to get her attention. That's so sweet!

I'm proud of you Johnny! xo Jen

Here's an email from your cousin Leroy:

Hi Jennifer,

I read the blog today. I am sooooo excited about the progress Johnny is making.
You all are making a big difference in his recovery. Talk about Faith, Hope and of course Love.
I am proud to have all of you as family. Please, tell Johnny I said Hello , I love him and keep getting better.

Love You Jennifer


Monday, October 19, 2009

Thank You American Airlines Center!!!

Thank you so much for the Miley Cyrus tickets!! We had a great time and the seats were awesome!! Johnny had planned to take Jackie and it was so nice that you allowed that plan to happen. We can't thank you enough! God bless you and thank you for loving my brother!!!

October 19, 2009


Today is Dad's birthday...

You have no temperature this morning. You are on schedule for the baclafen trial at 8am today.

I spoke with Mom at 10:46am, you had the trial injection and it's working. Your bending at the hip and you haven't done that in month's...well, since before the accident. The times you were sitting in the wheel chair, you weren't actually sitting but, you were doing the best you could. Your doctor has said that you have to lay flat on your back with your GI feeding tube turned off until 2:30pm to get the best advantage of the trial to see how you respond to it. Mom said that Craig, your physical therapist is coming by every hour to see how loose you are. Mom said you are moving your legs, with Craig's help, up and to the sides. Mom said your not crossing your feet like you've been doing. Your just very relaxed. That must feel like such a relief to you. I think it's possible that you could gain some weight since your contracted muscles aren't eating up all your calories.

Mom said that you were talking up a storm so she decided to take advantage of it. She said she told you today was October 19th and it was your Dad's birthday. She said, Johnny say happy birthday to your dad and you said, Ha bir da. She called dad and put the phone up to you and you said it again. I know you made his day! So, what do I get him, I surely can't top that! Ha!

Mom wrote down names on a piece of paper and asked you's the questions and your response:
-Wrote Jackie on a piece of paper and asked you what does that say and you said Ja E.
-Wrote mom and you said moooom. (drew it out)
-Wrote Jennifer and you said Jeeennn.
-Wrote Dad and asked you to point to dad and you did.
Then you were done with that.

Mom said she told you I love you Johnny and you said I la yu. Mom gave you a piece of paper with yes and no written on it and then asked you a series of questions and you pointed accurately to the answers.

Your speech therapist came in for you's the results of that visit:
-She asked you if you live in Dallas and you said nooo.
-She asked if you live near Waxahachie and you said yeeeah
-She sang the happy birthday song and had you fill in the missing words...she said, happy birthday to ___ and you said yu. Then she said, happy birthday dear ___ and you said da.
-she had you count from one to five and use your fingers along with the words. She said one, you said one and lifted one finger. She said two, you said two and lifted two fingers. She said three, you said three and lifted three fingers and so on until you got to five. (of course it was in the terminology your able to use)
- she worked on "a", "e", "ooh" and "o".
- she asked what the opposite for left was and you said rigggh
- she asked what the opposite of high was and you said looo
- she asked what the opposite of yes was and you said no
- she asked you what the first day of the work week was and you said munda
- she showed you pictures and you would either say the person's name or point to the picture depending on what she asked you to do.
- you followed swallow commands.
- you gave her a thumbs up and a thumbs down when she asked you to.

Mom said that your wounds doctor came by to check on one of the wounds on your behind. He said that it's looking good and starting to heal. That's good news!

Mom called me and put you on the phone with me and I said hi to you and you said hiii. I said do you know who I am? and you said yeess. I said, I love you. and you said La yu.

Your Occupational therapist, Julia, came by and did some exercises. She's going to cast your left arm at a 90 degree position tomorrow until Friday and then take that cast off and recast etc. This is called serial casting. It's to get you to extend the arm that you keep bent over your chest. This is a really good thing! So, if your visiting Johnny, don't be alarmed. He'll also be having his feet cast in the same manner and that's to reverse the effects of the drop foot. That's the way he extends his toes downward as a result of the brain injury. This is very common in TBI patients (traumatic brain injury). You were x-rayed today, both ankles and a right knee. Mom thinks it's to get ready for your feet casting.

When Jackie got out of school, she called to talk to you. She told you hi and you said hiii. She said are you feeling okay? and you said yes plain as day! We both gasped (she had you on speaker phone).

You are already approved by insurance to have the baclofen pump installed as soon as the trail shows that you are a candidate. I'm not sure how soon but I believe it is as soon as you have been infection free so depending where your UTI (urinary tract infection) is, will determine how soon you can have the surgery. I'm so excited for you Johnny! I really feel like you'll sleep much more comfortably when your muscles are relaxed. And, as much as you've been sleeping, it's not been quality sleep. I am just amazed at your progress today, it's like a switch has been flipped in you. When I think back to the doctor that told mom it was inhuman for her to allow you to continue in the condition that you were in and that it was the better decision to turn off your feeding tube and let you die, I get so mad! I'm telling you, there was no way mom was ever going to listen to him but it was still hard for her to hear those words from him. The little boy I spend time with during the week, Cooper, says all the time, Don't stop, don't give up...that's exactly what your mother has done for you. She hasn't stopped and she will never give up. So, so proud of you little brother!

xo Jen

Sunday, October 18, 2009

October 18, 2009


You had lots of visitors today. Buddy & Tammy, Diana & Dad, and of course mom!

You have no temperature today 98.3 and low secretions. The nurse told mom that you will have the trial, she will see to it. Your weight is 109 lbs. You are alert and throwing the ball some.

Diana asked you what's your daughter's name and you said Ja. You gave Diana kisses and then pulled her hand to your mouth and kissed her two more times. Mom said that you shook dad's hand and while dad was saying how you needed a hair cut, you touched your hair.

The nurse let mom, dad, Diana, Tammy and Buddy take you outside in your wheelchair. You were outside for 10-15 minutes. Mom said you seemed to really enjoy it but you kept your eyes closed. Maybe the sun was bothering you.

Mom called me after you got back to your room and put you on the phone. I asked you, how did you enjoy going outside? and you said, gooood.

I'm in awe of your progress! Keep up the great work Johnny, I know it's hard but we are all rooting for you!

Love you! xo Jen

Saturday, October 17, 2009

October 17, 2009


You had a shower today and a good shampoo. Your hair needs to be cut, mom said she'd do that next shower times. Your doctor came in and made the motion to shake hands and you shook his hand. He was impressed! Your nurse took your temperature with an under the tongue thermometer...she said, Johnny open your mouth and you did. She put the thermometer in and said Johnny close your mouth and you did. Ha! That's great! Your temp was 98.0 - that's really good!

Jackie, Cody, Bailey and I were at Cody's soccer game this afternoon. Cody had been pulled out and was sitting with us when mom called. She said that she put her phone on ring tones and handed it to you and you were pushing buttons and putting the phone to your ear. So, she dialed my phone and gave it to you. I said, Hi johnny. and you said hiiii. I said, hey bud and you said heeey. I said I love you and you said I la yu. Oh my heart! You talked to Cody a minute and Bailey too and then I put Jackie on the phone. You told her Hi and La lu and then you rambled on about something that we couldn't understand but clearly you had something to say!

We are scheduled to have a family conference Wednesday at 12:30 - 1:30...all your doctors and therapists will be there to answer questions and the next day, they will have a written report for the family in your file about what was said in the meeting. This place is on top of things!

I'm so proud of your progress Johnny and I'm thrilled that your fever is gone. I'm praying that your able to participate in the trial. Love you!! xo Jen

October 16, 2009


Oh Brother!
You have a fever of about a bummer! You have to be infection free man! Can we not catch a break!! I am not too proud to beg!

They don't think you have the flu. That's a good thing! It's really bad already and so many kids have it. The schools have even shut down when they have too many absences, just to wipe down everything. Your jaw bone is puffy and red again, like it was at Parkland. The ENT doctor there said it was a salivary gland infection. An infection control doctor is going to come see you. Your lung xrays show to be clear. They did a sputum culture (that's on the stuff that comes from your trach) but no results yet. The doctor said with your type of injury, this will happen for sometime. One step forward and one step back. Mom says her emotions feel like a yo-yo. That's such a good description! I concur!

Mickey, Jackie and I came by to see you. I gave you a shave look very handsome! It's really hard for Jackie to see you so we didn't stay very long. She did write you a little letter...


Hi Daddy! I love you so much! I heard that you spit at Aunt Jennifer and Cody. Not nice Daddy! I love you! You are the best thing that ever happened to me! I miss you at Aunt Jennifer's house! I love you! You are the best! It's like one step forward and two steps back! I miss you! I have everything that I've ever wanted, except you! Love you Daddy!

Mom said that your baclofen trial is Monday at 8am. This is only if you are infection free! Please God, place you healing hands on Johnny...clear his body of whatever has infected him, as only you can do. Please, please join with me in praying for Johnny, he needs this trial.

Oh Johnny, how your family loves you! We're praying and we're not giving up! XO Jen

October 15, 2009


You are on antibiotics again, a urinary tract infection this time. When Cody and I came in to see you this morning, the nurse ushered us out because they were changing out your catheter. You were not liking it and you liked it even less when I had to put your glove back on you before we left. We took a tour around your new place...visited the library where I got a book on brain trauma and then headed back up to see you. They weren't finished but I decided I wasn't leaving, I've already seen all there is to see and you seemed more relaxed when I was holding your hand and talking to you. Johnny, it is so hard to see you so vulnerable. I'm praying along with everyone else that your infection clears up soon!

I met your physical therapist Craig today. He is a very nice man. He didn't have much time left to do you physical therapy because of the amount of time the catheter change took so he put you in this reclining type wheel chair and told Cody and I that we could wheel you around the third floor all we wanted. Well, I was a little intimidated by that but I did feel comfortable enough to take you down the hall to the window that overlooked the parking lot. It's really not a great view but the sun was shining and it's not been doing that in a while and it sure beats looking at your hospital rooms four walls. I put you in front of it and it didn't take much coaxing to get you to look outside. It broke my heart Johnny, I swear I heard you crying. I read that with the brain injury it is hard to show emotions so it sounded like crying but there were no tears. Cody said he thought the same thing. We were just about to take you back to the room when your respiratory doctor came looking for you. It was time for you appointment with him. He got you all hooked up to your treatment and then said he would be back in a few minutes. Cody and I got you all comfy and then we said our goodbyes. I have a friend whose Dad is in the hospital next door so we went across to see them and when we got back your treatment was done. We talked to mom who said she was on her way and since I had to go pick up Cooper from school, we said our goodbyes again and put your music on for you and left. I don't think you feel very good and it was really hard to leave you.

Mom said that while she was there, you had a bath and really seemed to like it. She said that she worked with you trying to get you to use your "o" and "e". You also had an appointment with your neuropsychology therapist...I'm sure I spelt that wrong...they use NT for that word. This therapist works with you on day, week, month and year. Mom said that you also had a chest x-ray and it was over in the other building. They took you down the bowels of the building (that's what mom said) ...that's basement for those that aren't strange like my mother. You were sleeping compatibly when mom left you.

Love you Johnny!! xo Jen