Sunday, August 15, 2010

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

Monday, July 5, 2010

Year 1 Week 7 : July 27 - Aug 2

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

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

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

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

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

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