Monday, June 16, 2008

New Meds and New Jobs

Amber got a job! Yippee! She is now a waitress for Village Inn. She started her training tonight and seemed to enjoy it. Austin was pretty impressed when she came home with her Village Inn "Amber" name tag!

I'm working again too. I'm doing medical transcription at home for the physical therapy group I had last year. So far it seems to be working out fine squeezing it in between summer homeschooling. I really enjoy the work and it will give us a little extra money.

Austin has been chugging along on his IV meds until today. The homehealth nurses come out on Mondays to do labs, and his labs today showed elevated liver enzymes. He was also starting to have some ringing in his ears I think. He acted like his ears were bothering him. So the doctor switched him to a different IV med that needs to be infused every 8 hours. Homehealth had to come out and give the first infusion to make sure he did okay with it. That was at 5:30 this evening. So, yes, I am up waiting to give his 1:30 a.m. dose. But I think I'll gradually cut off a half hour until I get to 6 a.m. - 2 p.m. - 10 p.m. That will be easier to live with! The infusion runs over 30 minutes.

Austin's back has been healing really well, but he has started getting his leg spasms back and even more spasticity and discomfort through his right arm. He has been having trouble sleeping too. So, the doctor prescribed another medicine on top of the oral Baclofen and Valium. Between these meds and some warm packs, I think it is getting better. The neurosurgeon said he could get another baclofen pump possibly after the antibiotics are done, but it wouldn't be easy. The normal route may not be feasible with all the scar tissue in his back and it may have to be put in the neck area. But...I'm not ready to think about that yet!

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!

Monday, April 28, 2008

Road to Recovery

Austin is once again on the road to recovery. He is doing well. I am having trouble keeping up with two blogs. For more updates see Austin's blog at:

Thursday, April 3, 2008


Can you believe it? It is truly one thing after another after another after another with this poor child.

Austin has to have another surgery. We just found out today. I took him to the pediatrician Monday because of this red spot on his scar at the lower part of his back. It is more than a red spot actually, it is bubbled up. The pediatrician thought it was infected and he called neurosurgery. They saw him today but didn't think it was an infection. Thank God. But they took a bunch of x-rays and think he has a spinal fluid leak in his catheter that goes to his baclofen pump. The skin over this bubble is getting thin and if we don't do surgery to repair the leak and the "bubble" than he will spring a leak on his own. And, THIS would lead to an infection and having to take the whole pump out etc.

As for his GI tests, they came back showing inflammation in his esophagus and in the lower part of his colon. The GI nurse said the pathology report from his biopsies was so vaque, and they need more information. They are meeting with pathology to go over the results to determine what this is and why it is happening.

Other than this, things are going great! Kevin had been slow at work, but things are really picking up. Amber finally got her driver's license back and is happy she did not have to take a test. She is getting ready for prom and for her dance recital next month. And now that the official school year is coming to an end I've been going over what we have accomplished this year in homeschool. Homeschooling truly has just been one of the best decisions I have ever made. Austin has learned so much, and he is so much fun. I feel very blessed that I'm in a positon where I can stay home and teach. Dual enrolling was a good choice too, because he still gets to ride the bus and be with his friends for a little while in the morning. Austin decided he would like to go to summer school, which will be four mornings a week for I think four weeks. Hopefully some of his friends will be going. And this will be a nice break for us from each other too.

Saturday, March 15, 2008

Prayers, prayers, prayers

Please pray for our friends, the Grimm family, as they lost their 14-year-old son Ethan today to cancer.

Also, please pray for a special friend of ours, Patti, as she struggles with her fight against pancreatic cancer.

And since your already praying...maybe just tack on another small one. Our problem seems very meek compared to those above, but Austin's fevers/pains/abnormal blood tests continue. We met with the rheumatologist on Monday. Besides the abnormal sed rate and CRP, the only test that came back abnormal again was the test for inflammatory bowel disease. The doctor referred us to the GI specialist. He also prescribed Austin some Naprosyn for pain/fever. We got into the GI doc right away. He is definitely not convinced Austin has an inflammatory bowel disease. He doesn't have the family history or even the typical symptoms. But since just about everything else has been ruled out, we are going to proceed with a colonoscopy and an endoscopy on the 26th.

The good news is that the Naprosyn really seems to be helping with Austin's pains. And his temperature has been down to 99.5.

Thanks so much for praying!

Monday, March 3, 2008

Getting Back to Normal...I Hope!

Okay, after the hospital visits, the ER, the flu, and my mother-in-law passing away, I'm hoping we can get things running back to normal this week! Austin is still having nighttime fevers (usually around 100 to 100.5), but he is feeling pretty good during the day, other than some hip pain. He had blood tests last week, which still showed extremely elevated inflammation. He went to Children's today for another blood test that the rhematologist ordered, so maybe we will find out something there?

Austin did so good with homeschooling today. He always does, but he blew me away today. He seems to be picking up on some phonics. I'm so excited! After being shown a picture, he was able to find the matching word by sounding it out. He also did very well on some fractions...showing that he knew 1/4 and 1/2. He has learned over 100 sight words now. He is spelling some words with the online keyboard and typing into his own blog each day. He is doing a unit study on U.S. Symbols for Social Studies and studying the earth in Science. We are now using Grapevine Studies for bible, and are doing an overview of the old testament. We signed up for an adapted version of "Extra" by Weekly Reader and he loves these. We usually do these on Fridays.

Amber has been very stressed out about school, particulary regarding her math classes. I try to remind her she only has one more year of school left. To me that will go by so fast, but to sounds like eternity!

Kevin has been sick. He has another ear infection, but on top of that he has a lot of coughing and headaches. I felt so bad for him being sick at his mom's funeral. What terrible timing. But he is starting to feel better now thank goodness.

Wednesday, February 27, 2008

Another Mom in Heaven

Kevin's mom (my mil), Loraine (but we called her Leak), passed away on Monday. She was the sweetest most outgoing woman I had ever met. She told me once that she was shy when she was younger, but I didn't believe her. She could strike up a conversation with anybody. She was very sweet and loving. She used to swaddle up my kids when they were babies and rock and rock them. She was diagnosed with Alzheimer's about...8 years ago...maybe a little longer. She did very well up until about the last year or so. Then she slowly forgot who we were and became a little more fragile. We've missed her for awhile now, and now even more. But she no longer has to be confused or afraid, she is at peace in her new loving home.

Wednesday, February 20, 2008

Freezing Cold, Lingering Flu, and Hair Cut Too!

The temperature at daybreak today was -8 I think. I don't know what the windshield was for sure, but they were predicting -24. Schools were closed. Amber was so broken hearted.

Austin's been coughing up a storm. The thick gunky stuff. I feel so bad for him because he can't just hack it up and spit it out like we can (gross, sorry). Yesterday he did pretty good, but last night his temp went way up again and he began to vomit. Then he coughed all night and didn't get much sleep. He stayed in bed most of the day today watching movies and dozing on and off.

I got a new "do" today. Amber watched Austin while I went for a haircut. It was nice to get out for awhile, even if it was zero degrees!

Monday, February 18, 2008

Its the Flu

We took Austin to the ER last night because his temperature had been running up to 104, and he had started vomiting. He tested positive for influenza! We are thankful that it wasn't a blazing infection. We are also thankful we didn't have to check in to another room upstairs!

Friday, February 15, 2008

Thermometer Madness

I decided after we got home from the hospital that I would only take Austin's temperature before bed or if he looks not so good. Otherwise I was driving myself crazy getting different temperature readings on different thermometers, or in different ears, or from different arm pits! AND because at the hospital they told me they thought my thermometer was wrong. Before he went in his temps were 101+. In the hospital they were only 100+. But after we got home they were 100+ here too.

Well tonight, Austin is looking flushed and acting a bit crabby. I decide I better take his temperature. The ear thermometer says 102.1. The digital under the arm says 101.6 (which means 102.6). The forehead thermometer says 101.9. Ahhhhhhh! Which one is right? Actually these are closer to each other than they sometimes are. I can use them all again and I'll get a different reading for each one again. It drives me crazy. IT IS MADDENING!!!

Thank you my Electrician Man...

Wednesday, February 13, 2008

Happy Valentines Day!

Austin and I joined in on a Valentine Swap with an online homeschool group I belong to. Austin made some Disney/Pixar valentines up and also sent out candy. I decided to make my own, and took a couple pictures above. I think I did pretty good considering I've never made my own cards before. I had a few extra, so I sent one to my new friend, my Aunt in California, and to my Grandma.

Austin is doing good. He is back to his adaptive P.E./Life Skills classes, and he is also back to full-time homeschooling. He still tends to get warm before bed time. His temperature averages about 100.5 before bed. I haven't heard anything back yet on his IBD panel.

Amber informs me she has two dates tomorrow night. Hmmmnnn. I wonder how she is going to pull this off?

Happy Valentines Day!

Monday, February 11, 2008

Austin's Photoblog

Thanks to another wonderful idea from my friend Laurie, we have started a photoblog for Austin. We will be posting pictures, and Austin will be writing about them. Our first one went very well. Austin typed using the onscreen keyboard. He typed the words he knew all by himself, and he got help from me on the spelling of words he didn't know. Pleave leave him a comment if you get a chance. I know he will LOVE getting comments!

Friday, February 8, 2008

Happy and Sad

We got to come home from the hospital last night. Austin's bone scan and CT scans were considered normal. This is good right? And I am happy. But then why am I sad?

Because I know something is wrong and I don't know what it is. His temperature spikes are down to 100 degrees. According to the hospital this is not considered a fever. That is good right? But it is still not normal is it? His sed rate and CRP are down, and that is good right? But they still are not normal.

One of the rheumatology tests were elevated; a test for inflammatory bowel disease. They came and took more blood before we left. This was for an IBD panel which will be sent away to another lab. But, the rheumatologist said the normal symptoms for IBD are stomach pain and diarrhea. Austin has neither. And this is good right? And I am happy.

But I am sad.

Thursday, February 7, 2008


I wanted to share the voice mail I got from my niece, Mia. I wish I could put the actual recording on here because she has the sweetest little voice. Mia is 5 years old, and she is a triplet to her sister Makayla and her brother Garrett. was her message to me:

DEAR Teresa...Um

This is Mia. And...

I love you.


What is your cat name?

Send back a message.



What a sweet pea. She sounded as if she was writing me a letter!

Sign on the Door

I've decided I'm going to put a sign on the outside of Austin's door:

Austin went under anesthesia yesteday while they did a full-body bone scan and CT scans of the hips and spine. He was downstairs quite a long time. So....we are hoping, and I mean really HOPING, they have some answers for us today!!!

Tuesday, February 5, 2008

Yep, we're back

Yep, we're back at Children's. Austin's fevers continue. Actually, he is fine during the day (around 99 degrees). At night they get up to 101-102. Very strange isn't it? The rheumatologist came in last night. He ordered some blood work to test for lupus, vasculitis, rheumatoid arthritis. But upon physical exam, he didn't think these looked likely. Austin has been having more pain in his hips and/or lower back, so we went down for x-rays this morning. So....we wait some more...until we get test results...and hopefully answers???

Afternoon addendum: More tests are ordered for tomorrow; a CT scan and a bone scan.

Monday, February 4, 2008

Remembering Mom

Tomorrow marks the 4th anniversary since my mom passed away from lung cancer. She was only 59 years old. She was the best mom in the whole world.

My mom married my Dad when she was only 18 years old. She stayed home with us kids as we were growing up. She kept an immaculate house, sewed us clothes, cut our hair, was a fantastic cook, planted flowers, got us where we needed to go. HOW she managed to get all this done is beyond me. I couldn't do it in a million years. Of course, I didn't realize how amazing this was until I got married and became a mother of two myself. I've failed miserably at trying to accomplish all she did. She went back to work when we were older, and worked her way up from secretary to site planning for the Corps of Engineers. Soon, on top of being amazing mother, she was also an amazing grandmother. She was there for all of us as our babies were being born. She was always with us as we trekked through the pumpkin patch, hunted for Easter eggs, or just went shopping. She sewed clothes for the grandkids, and she had big family meals. She was the most honest and trusting person I have ever known. I loved her so much and I miss her terribly.

p.s. I think I've aged a little since my wedding picture!

Friday, February 1, 2008

A little out of control with the clippers...

Okay so I got a little out of control with the clippers today. But you should have seen Austin's hair when he got out of the hospital. Ewwwww. Of course, he didn't get a good shampoo for a whole week, plus we missed our 6-week hair trim. Since he will be going back to the hospital on Monday, I decided I better cut it myself. I did this this morning before his temp got too high.

I also had to break the news to Austin last night about going back. He insisted I turn the calendar over to February. I had his P.E./Life Skills days marked on the calendar, and I had to cross them off. He looked at me like..??? So I had to explain. I asked him if it made him sad, and he said yes. But, overall, he took it well. I told him we have to figure out why he keeps having fevers so that he can feel better. He understands. But I wonder if he wonders why nobody else has to stay in the hospital six times a year!

Wednesday, January 30, 2008

Home....but not for long

Because Austin did not have a high temp for the previous 48 hours and his CRP and sed rate had come down some, we got to come home yesterday.

The doctor sent me home with a chart to keep track of his temperature. At 5:00 it was 99 degrees. He acted fine. I put him in bed about 8:30 because he was yawning and yawning. I went back in a couple hours later to check on him, and his temp was up to 102.2! I couldn't believe it! He had a normal temp for the last two days, and then we come home and he spikes a temp.

I talked to the doctor today, and he thinks he needs to see a rheumatologist. Unfortunately, the pediatric rheumaatologist for the hospital is backed up until mid March. He is also out of town until Monday. The doctor wants to admit Austin back into the hospital on Monday so he can be seen by the rheumatologist quickly, as an inpatient.

I have not told this to Austin. He is so happy to be home. I just keep taking his temp and smiling. Last reading was 101.5.

Tuesday, January 29, 2008

I've Been Tagged

I've been tagged by Marilyn at Marilyn is a super person, a good Christian, and a wonderful mother of five. She lives on a farm in Texas. She blogs about her family, about devotions, special needs and well, just a mixed bouquet of things! Now it is my turn to tag.

Here are the rules:
1. You must post the rules before you give your answers.
2. List one fact about yourself beginning with each letter of your middle name. (If you don't have a middle name, use your maiden name).
3. At the end of your blog post, you need to tag one person for each letter of your middle name. (Be sure to leave them a comment telling them they've been tagged and that they need to read your blog for details).

M - Mom to two great kids.
A - Always trying to do better.
R - Really enjoy homeschooling Austin.
I - I have 3 dogs.
E - Every day I spend with my family is a blessing.

I'm tagging:
Laura at - a homeschooling friend from blogger land, who has a great kid and one on the way.

Missy at - a Weaver mom who has four kids and the neatest blog and lapbooks I've ever seen.

Darcy at - a homeschooling mom to three boys, who I don't know well, but she always has something fun to read about. - another Weaver mom who has two of the cutest kids I've ever seen.

Nevin at - a very special new friend of Austin's.

Home today Maybe?

Well, Austin's fever has been down for the last couple days and no more vomiting. His CRP and sed rate were still high yesterday, but not as bad as before. They are going to do more labs to see if those have come down more. If they have, we get to go home. Not that we know what the heck was wrong with him or is wrong with him???? Hopefully whatever it was/is, it does not return!

As I look out at this beautiful view on the sixth floor of Children's Hospital, I see fiercly blowing snow and cars crawling down the street. I walk into the bathroom of our corner suite, and it sounds like I'm in an airplane. Sigh. This will definitely be the day we get to go home.

Saturday, January 26, 2008

Waiting and Confused

We finally made it up to a real room on the fifth floor last night! Yoo hoo! I took a nice long shower this morning while Austin slept. It was so nice and quiet and dark last night...we both slept good.

Infectious Disease came in last night and said his other culture has not grown any staph yet, and he doesn't think Austin has a staph infection. His IV was going bad, and the doctor said to just discontinue the antibiotics because he doesn't feel this is staph. He said there are a couple of different viruses that could effect his blood levels like this. They want to just wait and observe and take more blood. Austin had a pretty good day yesterday. His temp was average around 101.

This morning the Orthopedic doctor came in and said he is having a "discussion" with Infectious Disease because he DOES believe this is a spine infection problem. The blood test that tells them if he has inflammation is worse now than when he came in. He thinks he SHOULD be on antibiotics. But, he says, we need to let them rule out their different things. They both decided they would like another test that actually looks for infection IN the bones. They called down to schedule this; however, it cannot be done yet, so close to the other test that was done with the dye. we are...waiting and confused.

Austin had a good day. He started out at 98.4 temp this morning. He had a shower and got up into his chair and played some games. Temp then went to 99, then 100, then 100.5. This is still not bad. Hopefully it won't keep climbing. Unfortunately it is evening now, and that is when it usually starts climbing.

I picked Amber and her friend up after school yesterday and brought them over to see Austin. Then Kevin and I took them out to "Buffalo Wild Wings." Not really my thing, but Kevin and Amber love that stuff.

Amber, who is very thin, was complaining about the fat on her hips. She said she needed to go in for circumcision. What?!??! I said. Turns out she meant liposuction. Um, thats my Amber.

Karen, our supervising teacher, came up here for a visit the other night. That was such a nice surprise. His assistive tech gal, Diane, also was up here and sent up a little beanie bear. That was so thoughtful! Grandpa came up today and took me to lunch. Grandpa is so good. He knows this place almost as well as we do.

Well, gonna sign off now. Austin wants me to watch "Fat Albert" with him.

Thursday, January 24, 2008

Second Home Update

Lets see....yesterday evening Austin's temp went up to 104.5. The nurse and I were putting cool wash clothes all over his body. It was crazy. The lab came up and took some more blood while he was having the high fever. His urine tested fine.

This morning he went down for his bone scan. The reason they do the bone scan is because it is the only test they can do to really see anything in his back with all the hardware in it. The radioactive dye circulates through the body, and if the dye accumulates in a certain area, this is most likely where the problem is. Well, I guess the scan showed some accumulation in his lower back, but no more than the last scan did in October. They are just not sure if this is a positive result.

There was a little accumulation on the right they wondered appendicitis? They took him down for a CAT scan of his abdomen. But no, no appendicitis.

The blood cultures did grow out some bacteria, but it took over 48 hours. I guess this could be a false result if it takes longer than 12 hours? But someone told me it takes 72 hours for a result... so, hmmnnn, I dunno ... sometimes these people just don't make sense to me! So lab came again tonight for yes, you got it, more blood.

HOWEVER, they did decide all in all, my poor suffering son does deserve some antibiotics. YEAHHHHHHHHH! So, hopefully he can start feeling better.

We are STILL in ICU in a room with no bathroom/shower. I hate it. I've begged for a room upstairs, but it isn't working. Someone told me there is a lot of kids with RSV.

And, well, that Body for Life I was working on is on hold. There is nowhere to exercise here and the only thing to do is eat.

Kevin is slow at work, so I think he might come hang out for awhile in the morning so I can go home and get a good shower.

Wednesday, January 23, 2008

Visiting our Second Home (Hospital) Again!

Okay, so he was getting sick. At least he got a nice shopping/arcade trip in before he ended up in here again.

Sunday Austin woke up with a 101 degree temp. He stayed on the couch most of the day watching movies. Monday he slept until 11:00. Still running a fever. But he insisted on doing some school work (sometimes I think he is the teacher and I am the student). I didn't want to work, but he made me.

Around 3:00 his temperature went way up...103. I decided to take him to Children's ER. The ER was extremely busy. We finally saw the doctor at 7:00. I let them know he had no other symptoms but did have the history of staph infections. They took blood work. At 9:00 they let me know his blood work did not look good. But rather than start antibiotics, assuming it is the staph infection back, they have to follow their routine of ruling everything else out and waiting for culture results to come back in 72 HOURS! All the beds were full, so we were sent home and told to return the next morning.

Yesterday morning we got here and they STILL had no beds available so we were put in ICU. Nuclear medicine came in and gave Austin a radioactive injection. Tomorrow and Friday he will be put under anesthesia and taken down for bone scans to see where the radioactive dye is accumulating. He did pretty good yesterday. He stayed in his wheelchair and played some games on the computer. But, around 5 p.m., he started getting really warm again and got into bed. In the middle of the night he was up to 103 degrees and vomiting. It is late morning now, and he is still vomiting.

I still don't think they want to start antibiotics yet. Not until they see bone scan results or culture results. They are going to try Pedialyte now. If that doesn't stay down, than it will be IV fluids for my little man.

We are still in ICU today. I am praying for a room upstairs...with a shower...with a bathroom...with more privacy...with less beeps....with movies and with familiar faces.

On the brighter side of things, Austin has a new pen pal named Nevin. He is so excited about it. I set him up with his own email. His new pen pal likes video games and Austin thinks he is just the coolest friend ever!

Saturday, January 19, 2008


Today the kids and I went shopping for new shoes for Amber. She has P.E. this semester and realized she must have left her tennis shoes at camp. In July. Wow. Obviously she never wears her tennis shoes. She usually wears the slip-on Vans shoes or clogs. As a matter of fact, when she was trying her new shoes on, it took awhile. I thought there for a minute she forgot how to tie her shoes!

While we were at the mall, we went downstairs and played in the arcade with Austin. Something to do. Doesn't seem like we've been getting out very much since it has been SO cold. I think it was a high of around 9 degrees today!

Austin didn't seem quite himself yesterday. A little red in the face, eyes bloodshot. Emotional. I thought for sure he was getting sick, but today he was fine. Thank goodness.

I'm still chugging along with Body for Life. Day 12 and I've lost four pounds. Not a lot, but I'll take it. Not bad at all for all I get to eat. I can honestly say I'm not hungry. I did dream about cinnamon rolls the other night though! Kinda funny. So today, which was my free day, I had a cinnamon roll from CinnaBon.

Kevin got me a new camera for Christmas. I took a couple pictures and put it aside. The next time I went to use it, the batteries were dead. I tried putting in several different types of new batteries, but it wouldn't turn back on. Kevin took it back to the store and I got a new one. I decided to try out the movie feature on Sammy's funny little hop, hop, hop when he goes to fetch a toy. It is posted up above. That is really nifty. I'll have to make a little movie of Austin using his eye gaze.


Thursday, January 10, 2008

Happy New Year

So....what are your New Year's resolutions??? I've decided to start the "Body for Life" program. I started Monday. I am alternating the treadmill with upper body weight lifting and lower body exercises. I am eating six small meals a day. I have not been hungry, but I am so sore I can hardly move! Austin is laughing at me today because every time I get out of the chair or go to sit on the chair I'm "owe, owe owe!" Going down steps is MURDER.

Austin got his stitches out last week from where his cyst was. There was a small area that was still not healed, so we've been irrigating it and packing it with gauze a couple of times a day. I think it is starting to look better now.

Amber started doing some research on the internet and found some very sad pictures and information on animal testing. She just made up some fliers and went out delivering them. Some of the big companies involved in animal cruelty that she found are: IAMs, KFC, Mars Candy Company, PetsMart, Loreal, and also Columbia University.

We had a good Christmas and made our trip up to the Mall of America. The mall was so, so busy. I guess we weren't the only ones with the idea. The hotel was so, so busy too. It took forever to get an elevator. But we did find some good deals. We had no problem spending our Christmas money!!!

Austin and I got back to homeschooling on Monday. He really enjoys the Time4Learning program we've been working on. He is doing so well with his Reading program and spelling/writing too.

BYE for now!

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


Lapbook Unit 2