Friday, May 30, 2008

Biography for Austin

In our application for a canine companion, it asks for an autobiography or a biography if the applicant cannot write his own. Here is what I came up with. Please comment! Should I include anything else? Omit anything?

Austin was born at 8 pounds 1 ounce after a normal pregnancy but difficult labor and delivery. This resulted in meconium aspiration and lack of oxygen during birth. Austin was intubated and transferred to another hospital with a NICU. He was experiencing seizure activity at that time. He came off the respirator at about four days old, and was well enough to come home after eleven days.

Although Austin responded well to sights and sounds, he was still not grasping, sitting, or crawling at 10 months old. He was then diagnosed with choreoathetoid cerebral palsy. He began to receive physical therapy, occupational therapy, and speech services after this time.

Austin participated in a toddler group and then a preschool program before starting kindergarten. He learned to drive his power wheelchair and use a communication device at age five.

Austin went to a small neighborhood elementary school and was always well liked. He had mostly the same peers throughout sixth grade. In junior high, Austin moved into mostly special education classes, and it was quite obvious he had fallen way behind his peers in school work. He also began to have some medical problems in the sixth grade. He was diagnosed with chronic aspiration, and needed to have a feeding tube put in. He also developed severe scoliosis and had to have a complete spinal fusion. Shortly after his spinal fusion, he developed a very severe staph infection that led to spinal meningitis. Even after long-term IV antibiotics, the infection kept coming back. So, just last month all his spinal fusion hardware was taken out, and he is again on long-term IV antibiotics.

Last fall, before starting high school, we made the decision to homeschool part of the day to concentrate on Austin’s reading, math, and computer skills. Austin still has a couple of classes at the high school and gets to spend some time with his friends.

Austin participates in Special Olympics Bowling, Basketball, and Wheelchair racing. He also plays Buddy Baseball in the summer. He enjoys shopping, going to movies, and playing computer and video games. He enjoys spending time with his family and friends.

Austin has always been a happy and cheerful guy despite his medical problems and physical disabilities. He has a great smile and a kind heart and anyone who knows him loves him!

Wednesday, May 28, 2008

You Must Be So Happy to Be Home?

This is what everyone says when you come home from the hospital after a couple of weeks. "You must be so happy to be home?!"

Truth is, at home:

I don't have the lady knocking on our door every morning asking if she can clean our room.

I don't have the nurses that come in and ask if they can clean Austin up, give him his meds, help change him, reposition him, or make him more comfortable.

I don't have the volunteers come by to ask if we need a movie or a book or anything to do.

I don't have the guy in the purple vest come by and ask if I'd like anything from the snack cart.

I don't have anyone that comes by to see Austin from the Omaha baseball team, or the hockey team, or the car racing team.

I don't have the elevator that conveniently takes me down to the coffee shop or the gift shop or the cafeteria (where I do not have to cook).

I don't have the bills, or the laundry, or the errands, or anything else that needs my attention ... only Austin.

BUT, at home:

We are back in the privacy of our own quiet home with Kevin, Amber, and the puppies and able to sleep in our own comfy beds. Even though it is a lot more work, it is definitely worth it!!!

Monday, May 19, 2008

Central Line

Austin gets a little better every day. Today he is smiling and it is so nice to see. They are taking him down to surgery at noon to put in a central line (so he can continue his long-term IV antibiotics at home). They pulled out one drain on Saturday, and the other one came out this morning. They took away his pain pump last night and he is just on oral pain meds now. So...things are moving along! Hopefully we will be able to go home in a day or two!

Friday, May 16, 2008

Room 608

We got back upstairs last night. Oh we like it so much better up here than ICU. It is so much quieter. Austin's pain has been kept under control, but he is very shaky and sweaty and uncomfortable. I think he is having withdrawl from the baclofen pump. Even though they are giving baclofen to him orally, it is just not the same as the pump. He hasn't been able to sleep well, and the vomiting started up again this morning. This is tough. But I know it will get better.

Wednesday, May 14, 2008

Surgery Long But Good

Just a quick note ... I am so tired. But I know there are many friends praying and I wanted to update. Austin made it through surgery fine today. It ended up taking about 7 hours, but ALL the hardware is out. He is taking two different IV antibiotics and will eventually be going home with these. They were having some trouble getting conrol of his pain when he got into the ICU tonight, but now he is resting comfortably. I will write more soon! Thank you so much for praying!!!

Sunday, May 11, 2008

Prom/Recital/Austin Update

Well we all survived the hectic hospital/hair/recitals/prom day! AND we are glad it is over. Our first dilemma occured when Amber was 10 minutes late for her hair appointment. They told her they couldn't fit her in because she was late. Luckily, the hair place was near the hospital and I sprinted down there to chat with them. They did get her in after some rearranging. Thank goodness. Then we realized we never ordered the boutineer for Nick, her date. So I had to call and beg to have someone make one of those at the last minute. The weather was terrible. Very heavy rain and winds. I felt so sorry for those girls in their costumes, prom dresses, and beautiful hairdos! But it all turned out okay in the end. Amber looked absolutely amazing. I'm so proud of her.

Kevin stayed with Austin. I put some fish tank software on the laptop and he was watching the fish swim around when I left. When I came back he "told" on Kevin - that he was channel changing to the Nascar race when Austin was trying to watch Nickelodeon! Ha, ha...busted.

Infectious Disease came by to let me know that Austin's cultures have grown staph and some other bug. They switched his antibiotics last night. They switched again today, so I don't know if they found more information or not? But the doctor said he will be on antibiotics for a long, long time. Longer than he was last time. Sigh.

I missed our ortho doctor yesterday because I was running Amber home, so I haven't got my long list of questions for surgery answered yet. Hopefully we can have a chat tomorrow. They are also going to come by and change that wound vacuum tomorrow. Eeeek. That will not be fun.

Again, thanks for the continued prayers! We are going to post more Amber pictures on Austin's blog.

Saturday, May 10, 2008

A Poem I Found

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown

Friday, May 9, 2008

Room 610

Austin swerved off his road to recovery and went straight to the ditch.

He just got out of surgery to irrigate and debride his infected back wound. The doctor took out a "free floating" screw and said his instrumentation has shifted out of place. He says this is another indication that the infection has just never cleared up. He is pretty sure the infection is down in the hardware, which would mean it is also in the baclofen pump. Tissue samples were sent to the lab. Austin is scheduled to go back to surgery on Wednesday to have all of the hardware and the baclofen pump taken out. Like I mentioned in his blog, we are devastated. I'm really having a hard time believing this is happening.

Austin did well with surgery tonight. He was a little nauseous after waking up, but he is sleeping peacefully now. He has a hemovac running, which doesn't look very comfortable coming straight out of his back, but it doesn't seem to be bothering him right now.

Amber's dance recitals AND prom are both tomorrow! What timing huh? I'm thankful that she has a friend who got her to her rehearsal tonight and is taking her to her hair appointment tomorrow. Kevin will have to hang out here tomorrow night so I can go to her recital and see her off to prom.

Thanks to everyone praying for us!

Sammy...Go...Fetch...Hop, Hop, Hop


Lapbook Unit 2