Sunday, August 15, 2010

Year 1 Week 19 : Oct 19 - 25

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

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

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

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

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