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Thursday, November 17, 2005 10:23 AM CST

Happy November to everyone. Besides Anthony's journal website, our family has added our own. The address is on the links part of this page. Feel free to visit.

We are getting ready for the holidays. Happy Thanksgiving to all. Things are pretty slow around here. Which is nice for a change.

Anthony is getting a new wheelchair. Sounds pretty fancy. Reclining seat resembling a lazyboy. Lots of padding so he would be comfy traveling. A handle that would be reattachable (if that is a word) so we can put it in front of the chair so I could watch him while I am wheeling him around. Sort of like a stroller.
Rehab designs is doing it and I am very pleased with how they are trying to help me with what I am looking for.

Well, hopefully, I will be writing before Christmas, of course with good news, so have a great November and see you in December.

Monday, October 3, 2005 12:59 AM CDT

Wow, I have not written since May....Nothing has been really remarkable since then. Things have been pretty quiet for Anthony.

He has started going to Gillette Lifetime, which is an adult clinic for Gillette patients. He has a new neurologist and a phisiologist. We haven't seen him yet, but the neurologist was fabulous. Dr. Exconde. (It is unbelievable how the physicians seem to get younger and younger. Not that I am getting older and older. ARRRGGGHHH) This dr. put Anthony on a time release tegretol, so he has not had any breakthrough seizures since. Yeah!!!!!

We have no big plans this fall, just to enjoy the turning leaves and apple orchards. It is going to be nice.

Oh, Anthony HAS started staying at respite overnights. He loves it, and I am getting used to it. It is Phoenix Residence and they are wonderful. He will be in the new house on Viking Drive the end of this month for 2 nights.

Well, love to everyone and have a great fall. Will write as soon as possible.

Sunday, May 15, 2005 10:56 PM CDT

Well, I cannot believe summer is here already. Although we would not know it by the weather we have been having. We really like the nice weather.

Anthony will be at the Phoenix program one year in July. This has been a great year with them. One of the instructors got married and the directors daughter had a baby girl. We really feel like they are part of our family.

We are in the process of looking at respite care for Anthony. We went to Phoenix Residence and they will have a place for him by July. It will be a homelike enviroment, and it will be new. They are in the process of building it now and it is on Viking Drive off 36 in Little Canada. It is a really big step for me, but I think it will be good in the long run. He could spend a day and night there or a week if we needed. The people seem nice and I usually trust my first impressions. We will see.

We will be spending July in Utica. Lots of family coming in for visits. Should be nice. We found a device that will heat up Anthony's food in the van. I was hoping they would invent a car microwave, but I guess this will do. It is pretty slick. We will see how good it works.

We went to Ellendale this weekend for Lindsey's (Eric's sister)(Eric is Denise's significant other) graduation. It was very nice. She is so cute. Looks a lot like Drew Barrymore. We had fun.

We have a neurosurgeon appt this week at Gillette. Dr Partington. He is one of my favorites. Just a routine, but we will be having blood work done. A few sticks of the needle. THat is Thursday.

So have a great day everyone. I will try to be more diligent in writing. I will also try to get some pics on. Anthony went to see the Silver Harmony singers last week, and I will try to put the pics on here.

Love to all.........You are always in our thoughts and prayers.

Tuesday, April 19, 2005 1:49 PM CDT

Wow it has been a long time since we have been here. We promised a special Christmas journal entry, but things got a little hectic. Grandpa Capraro had a heart attack, so we ended up spending January and part of Feb in NY taking care of him and Grandma. He is doing very well, and our next trip is scheduled for July.

Anthony is doing really well. Our next adventure is his routine (every 2 years) dental appointment. He has to be admitted and sedated to get a cleaning and xrays. Of course, other work if necessary. He has a "phenom" dentist. His name is Dr Walker. A very caring doctor.

Well, hope everyone has a great day.. We are going to be more vigilant about writing.

God bless our new Pope Benedict XVll. He has taken a name that we hold very close to our hearts..Anthony's great grandpa. I will try to find a picture of him and post it.

Monday, November 29, 2004 3:41 PM CST

Hope everyone had a great Turkey Day..We did. Caroline and Nute hosted this year. They did a great job.

Anthony is just enjoying his life. No doctors, no hospitals....and just loving going to PAI three days a week.

We are getting ready for Christmas. We cannot believe the year is almost over. I was looking at some old videos of Anthony. When he was 8-9 years old. Also his prom from 2000. How cute he looked. I will try to get pictures from then and post them.

Well, have a great day. We are planning something cool for the website for Christmas. So keep checking in. Love to all.

Thursday, November 18, 2004 11:13 PM CST

Just a note to send our best to everyone. We saw Dr. Stafford today, GI doc, and Anthony will be staying on the omeprazole for a while. He will probably have to have another endoscopy in a year, but we think he is doing well with the medication. Let's stay away from surgery for a while.

His Phoenix program is going great. I am making a scrapbook of the things he is doing there. He has made a couple of community contacts. Mostly at the local Sam Goody Music stores. They have been taking him to pick up his hip hop cd's. He also has his own radio/tape player from the Minnesota Assoc of the Blind. They send him books on tape and Lisa says he likes them. He went to a concert at the Linden site, it was a group of senior citizens who go around and sing and put on little shows. I went too, and they were really good. Sang a lot of songs that Anthony's grandma and grandpa sing to him.

Speaking of Grandma and Grandpa, they are really enjoying the new house. If anyone wants the address, you can contact me.

Well, gonna get going. Hope everyone has a great day and if I don't get a chance to write before Thursday, have a wonderful Turkey Day. God Bless you all.

Sunday, October 31, 2004 1:19 AM CDT

Hello everyone. It has been a long time since we have written in this journal. This summer has been very busy and it seems fall is going in the same direction.

Anthony was a cowboy for his halloween party at Phoenix. He looked so cute. I am putting his picture on the photo page.

He is doing very well. He loves the program he is in. He really enjoys going there. It is like he knows that when we get into the car in the morning, he is going to PAI.

The rest of the family is doing well. No big news. I hope to write more to keep up.

Love to all and have a great Halloween.

Monday, August 9, 2004 11:02 PM CDT

Good evening...Well, Anthony had his endoscopy and they found some bleeding ulcers on his esophagus. That is why he has had blood in his stool. We are treating it with medication, and going back in 6 months for another test. If he is healed, we will be ok. If not, he may have to have surgery. So keep him in your prayers.
He has been going to Phoenix Alternatives program since Thursday. I take him and pick him up. He has some great people working with him. He has already made some friends. When I go in there, he always has someone he is keeping company with. He is such a social butterfly. Very cute. I feel very good about the decision to send him.
We are probably going to make another trip to NY in Sept. We bought a house out there and will have to be there for the renovations. Mom and Dad have agreed to live in the house since we will not be there for most of the year. Thank you to them.
Well, gonna sign off. Hope to write again soon. Hope to hear from everyone again. We really love reading the guestbook. Love to all


From the rising of the sun, to the place where it sets,
The name of the Lord is to be praised.
Psalm 113:3

Saturday, July 31, 2004 8:00 PM CDT

Well hello everyone. We have been away for 7 weeks and are really happy to be home. Our family in New York are doing well and we all had a great time. Denise turned 30 July 23, and we surprised her with a trip to New York city and all her girl cousins. They came from Cincinatti, Wash.DC, Utica and Syracuse. We had so much fun and did a LOT of shopping.
We are back and Anthony is having an endoscopy done on Monday. He will then start back to program on Wed. Hopefully, we will get back into the swing of things soon.
Have a great weekend. Will write again on Monday evening.

Thursday, July 1, 2004 10:36 AM CDT

Joyce and AJ are in New York, so this is Joe writing. Everything is going good, I will be joining them next week. It will probably be towards the end of the month when Joyce writes again and she will fill everyone in with more details.

Sunday, June 13, 2004 11:31 PM CDT

Will write more later....Yeah...we graduated. See the picture in the album. Thank you to Cindy for sending it to us. It is great. Will get more on later....Love to all..

Wednesday, June 2, 2004 1:04 AM CDT

Hi everyone,
sorry I haven't written in a while, but we have been so busy getting ready for graduation, out of town company, doctors appts and getting back to school. Just trying to get back into a routine has been a chore.

Anthony is doing so well. He is back to eating his regular diet. I don't know how much weight he has gained back, but he is getting there. Joe and I have noticed that he is breathing better at night and his "output" has been on a more regular basis without help. He really is getting back to normal for him..

We are planning our yearly trip to New York. We will be going out on June 18th and me and Anthony will stay until the end of July. Joe is coming back to MN on June 21 and flying back to Utica on July 8, in time for Boilermaker. I hope we get to see everyone we can. Call me at my parent's home if you are in the city.

Love to all...




1corinthians 2:9

"No eye has seen,
No ear has heard,
No mind has conceived
what God has prepared for those who love him"

Monday, May 24, 2004 9:23 PM CDT

well, i haven't written in a while. last week Anthony had Koop and Stafford (GI doc) appts. Things went well. he is eating a lot better and we are keeping an eye on his bloodwork.
Anthony started back to school today and I was told he was smiling all day. He really loves being there. Tomorrow they are going to see Shrek2. I wish I was going. Denise, Care and Kelyn went to see it and they said it was great.
Well, we are getting ready for company and Aj's graduation. I will take pictures and hopefully get them on this site with prom pictures.
Everyone have a great day. Love to all.

Monday, May 17, 2004 11:37 AM CDT

Good Morning,

We are going to use this day to be the first day of the rest of our lives. Getting onto a more strict schedule, so keep us and Anthony in your prayers.






Philippians 4: 12-13

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.

Sunday, May 16, 2004 9:38 PM CDT

hello everyone...this week we had our Dr. appts. Dr. Koop said that he is very pleased with how things turned out. Anthony's spine is at 39 degrees. We never thought it would get that straight. Now we have to work on his nutrition to help the bone grafts take hold and create the solid bone.
Dr. Deb saw him and agrees that he looks good. Of course, she is on the same avenue we are with the nutrition issue. She suggested 3 tums a day for calcium. I thought that was interesting. Anthony weighed in at 59.8 lbs. He was 66 lbs before surgery and that is our goal. He is starting to eat a lot better. He is eating the same as before surgery.
I think I will be sending him to school the last week of May and the first week of June and then he graduates.
Well, have a great week everyone and if I get a chance this week, I will write more. Love to all.......

Monday, May 10, 2004 11:03 AM CDT

Hello everyone...we are doing well. Anthony had prom on Friday. He got into the school and started smiling and kept smiling until we left. He had such a good time. What a wonderful experience for all of us and it was very bittersweet because it is his last prom. I will put his picture on the site this afternoon.

He still isn't eating as good as he should, but like I said before, we will work on it a little at a time.

We have graduation coming up on June 9th and company coming from NY to help celebrate. It really is a celebration for us. I think these transitions are harder for me than Anthony. I have met with the people who are going to be with him after June, and they are WONDERFUL, but it is always hard. It won't take me long to get to know his new routine and the people who will work with him and he will just be up the block, so (sorry Pam) I will be stopping in frequently. At least in the begining.

Well, everyone have a great day...Love to all. You are in our prayers daily. Thank you for taking the time to stop in on our site. You cannot imagine how wonderful that makes us feel.



Psalm 1, 1-3
Blessed is the man who does not walk in the counsel of the wicked or stand in the way of sinners or sit in the seat of mockers.
But his delight is in the law of the Lord, and on his law he meditates day and night.
He is like a tree planted by streams of water,
which yields it fruit in season and whose leaf does not wither.
Whatever he does prospers.

Wednesday, May 5, 2004 11:07 AM CDT

Good Morning everyone...Sorry I haven't been able to write, but I have been so busy. Not being home for 3 weeks, is not good for my house. (one step ahead of the health dept...haha)
Anthony is doing well. We were going to go out today, but I didn't realize how much harder it is to get him ready to go out. So I gave up, (can you believe that), and decided to make a different schedule. Now I can plan better.
He isn't eating as much as I would like him to. That is going to have to be another scheduling problem to work out.
I will keep you all posted on how that is working. Love to all. I hope to get back on a routine of writing the way I used to.
have a great day...

Thursday, April 29, 2004 10:44 PM CDT

We are home...Anthony is doing great. He is eating well, not up to what he was eating before our little adventure, but it is ok. He will just have to work up to it.

I put him in his pajamas and in his own bed tonight, and he just giggled and laughed and hugged his Curious George. He knows.

They are still a little concerned about his high platelet count, and high white blood cell count, but we have plans to meet with our GI doc and Dr. Deb. Between all of us, we will get it figured out. Positive thinking.

It will be nice to get back to normal, (ok, i know a lot of you who know what it is like in our home are probably laughing hysterically. What is normal in our world here?!!!). We are looking forward to Anthony's prom next week, his graduation on June 9 and our visit from Grandma and Grandpa and Aunt Janice and Uncle Tony from New York.

Good night everyone and sleep tight. You will be in our prayers. God Bless.

Wednesday, April 28, 2004 2:26 PM CDT

Just got the news!!!!!!! If Anthony's bloodwork looks good tomorrow, (no doubt it will) we are going home....HOME SWEET HOME.... Just wanted to let everyone know. Looks like he might be able to go to prom afterall. I will write more later....have a GREAAAT DAY!!!!!!





Praise to God. Thank you for all you have done for us..

Wednesday, April 28, 2004 8:36 AM CDT

well, we are looking at the light at the end of the tunnel. Dr.Chris said that if he keeps up with what he is doing and we keep an eye on any infection starting, that we possibly could go home in a couple of days.
It seems like we have been here forever. I didn't even remember what day it was this morning. I actually had to think about it. Weird!!! No one can imagine how it is to be in a situation like this, unless you are in it. If you know of anyone who needs a visit or a phone call, take the time to do it. There are people who have family in hospitals that they are sitting by their side, and it is a very lonely place to be. I thank the Lord for the many supporters I have had and you really cannot fathom how much it has meant to me. I have been able to keep my sanity.(ok, so what sanity i had when i started this journey,ha ha)Anyway, I will keep up with this journal, to keep everyone informed on how Anthony is doing,and to stay in touch with everyone. It is so much easier. Take care and we love you all.

Tuesday, April 27, 2004 9:00 AM CDT

Today Anthony weighed in a little lighter than yesterday, yet he was eating almost every hour. I guess he is one of the family that took after Grandpa-pa, and Aunt Linda. Eat all you want and never gain.
But he is doing really well. He is eating and drinking and keeping it all down. The peds doc said that there is an infection somewhere, but just cannot pinpoint it. He has been on antibiotic for seven days, and not running a fever. We are going to stop the drugs and see what happens. The ortho people are going to look at the surgery site and I guess the hardware.
I will write more later. Have a great day...love to all.

Monday, April 26, 2004 1:57 PM CDT

good blessed day. anthony is holding my hand, so i am writing with one hand.
well, he pulled his second tube out and this morning his iv had to be taken out because it was leaking. So now he is tubeless. But that is the blessed thing today. He is eating really good and keeping things in. He had an ent dr appt today and they sucked out a ton of wax and he DOESN'T have an infection. Yeah!!!!! As long as he is eating and drinking and he is gaining weight, we can go home soon. As Dr. Faville says, he will toss us out the window.
So that is our plan, eat, drink and get fat. (wait, does he have the life or what?!)
I keep all of you in our prayers and thoughts. Remember us. Thank you so much...The Lord has truly blessed us.

Love to all.

oh,check out the new picture. it was taken after he pulled out his last feeding tube. the little stinker.

Sunday, April 25, 2004 10:01 AM CDT

well, deja vu all over again. Anthony pulled his tube out again. The little hudini (don't know if I spelled it right) slithered right out of the arm restraints. The first time the nurse caught him. Then she came in a half hour later and he had his famous grin on his face with those cute dimples, and the tube was out.
The peds guys came in and they want it put back in again. So we will be in back Radiology this afternoon. I am a little embarrassed to go down with him. It sorta feels like i am going to the principal's office. That guilty feeling. Oh he is going to drive me to drink....(only kidding)
So everyone have a great day...we will try. Will write more later. Love to all.

Friday, April 23, 2004 8:18 AM CDT

Good Morning...Yesterday Anthony was naughty and pulled his NJ tube out. Today we have to go down at 10:30 AM to have it put back in. They won't have to take pictures, so it probably won't take as long. He was so proud of himself that he pulled that tube out. He had one of his happy faces on, like the "cat that just ate the canary". We wasted a day of nutrition, so that put one more day on his stay. His blood work came back good yesterday. Still high white count, but the peds doc said that it could be due to the workings of the bone marrow. It makes red and white blood cells and platelets. Anthony had a high white count and platelet count. So here is what he thinks is happening:
Anthony is iron deficient and red blood cells need iron to grow. the marrow is making more blood cells but there is no iron to make the red cells so it is just putting out more of the white and the platelets.
It made sense to me when he was telling me, but I am not sure if I explained it right. Anyway, he may not have an infection, but just anemia. We just need to get his nutrition up and get him fat. (boy I wish I had that problem). I am not sure of how much longer we will be here, but we need lots of prayers. Please!!!

Love to everyone..have a great day...write more later.

Wednesday, April 21, 2004 9:34 AM CDT

Good Morning....Today we are scheduled for some GI testing. Anthony is doing well. Not eating anything, but not putting anything out either. He just had his bath and he is clean shaven. Those who see him every day can appreciate that. It is so funny when people see him, think he is a kid and he has a 5 oclock shadow. We cannot get him into anything free anymore. If we tell them he is under 5 (with his shadowed chin) they look at us funny, but are not brave enough to say anything. Sorry to them.

Well, when we get his test results back, we will let you know. Have a great day. Love to all. Pray for us.

Tuesday, April 20, 2004 11:05 PM CDT

well, Anthony is going to have some testing done tomorrow. GI testing. They are also going to insert an NJ tube. Apparantly, Dr Koop feels he has what they call SMA syndrome. Can't spell the big words. The aeorta artery is putting pressure on the upper bowel causing food not to pass all the way through. So if they put the tube in as far as the lower bowel, they can send nourishment to it so he can start to gain weight again. I hope this makes some sense. It does to me, but I know what I am trying to say. Oh well, at least they will be doing something to help that poor baby.

I am going to go to bed now. Keep us in your prayers. I know I sound like a nag, but we really need you now. Thank you everyone. Love to all...

Tuesday, April 20, 2004 4:11 PM CDT

Ok here is the scoop. Anthony is running a low grade fever and they think there is some kind of infection. It is not due to the surgery, just coincidence. He is going to have some testing done and given an antibiotic. We will probably be here 2-3 more days. I will try to keep this updated as much and as specific as possible.
Love to all....

Tuesday, April 20, 2004 10:26 AM CDT

We are in the hospital again. Dehydration and not eating, so we are back at Gillette. I will write more when he gets settled into his room. Remember us in prayer. Thanks

Saturday, April 17, 2004 1:17 PM CDT

We are home. Got home yesterday around 10:30AM. Anthony seems very comfortable. The only thing is we are having a little trouble with eating. He isn't up to what he was doing before surgery and not keeping a lot down. I hope he doesn't lose the weight we worked so hard to get. (I wish I had that problem)

We weren't able to get the hoyer lift, it was not a very safe one that they brought over for us to try. I am doing some more investigating on that subject. I cannot lift him myself, so I depend on Joe and Larry to help. Of course, Denise and Caroline are around too, but they are no stronger than I am. Oh well. We will figure something out. I am determined to keep him home, no permanent placement.

Have a great day everyone and will write more later.

Friday, April 16, 2004 8:07 AM CDT

Well, at 10 AM we are getting free. On our way home. I will write more tonight on how our journey home went. Have a great day....

Thursday, April 15, 2004 12:31 AM CDT

Well, tomorrow may be the day. We may be blowing this popscicle joint! Anthony just has a pic line in now, and it will be in until 5 min before we leave. They leave that in just in case something happens and they need to draw blood last minute or he has to stay in longer.
He had his first shower this morning and looks so good. He was on his back in bed and he rolled over and grabbed the rail of the bed and rolled himself over to the right side. Yeahhhh!!!! They are going to get us a hoyer lift to pick him up at home. We will rent it because it takes a few months to go through insurance.
Well, tomorrow I will be on our computer and will put some new pictures on from the hospital.
Everyone have a great day. Love and God Bless you all.

Wednesday, April 14, 2004 10:01 AM CDT

Hi everyone!
Mom and Joe have been so busy, I thought I would post a little update.
I visited with Anthony yesterday and he looks great! Mom & I were able to see his new x-rays that were taken yesterday and they were amazing! Mom said A.J. sat straight up to have his picture taken. She even thinks he is taller than I am now! (I guess that isn't saying much!) Mom and the nurses decided Anthony no longer needed super strong pain meds and are moving him to just Tylenol for a while. He is such a little trooper!
And so are Mom & Joe! Mom has hardly left A.J'.s side and Joe is there as soon as he can get off work. A women in the hospital commented on how they should win the "Parents of the Year" award!
I was also able to meet quite a few of Anthony's doctors. They are a fun bunch with quite a sense of humor among them. I have the utmost faith in their ability.
I'm sure Mom will post soon with some more updates, so keep checking in!
Love,
Denise

Tuesday, April 13, 2004 8:58 AM CDT

Good Morning....Anthony had a great night. He is eating solid food and getting most of his tubes pulled. He is going to have an xray today to check out his progress. I will try to write more later.
It just seems like I don't get to use the computers very much. Lots of people wanting to get on.
Have a great day. Love to all.
Thank you everyone who is sending notes to Anthony. We really appreciate hearing from you.

Monday, April 12, 2004 10:43 AM CDT

Today we are up and walking around. Well, I am walking and Anthony is riding in his wheelchair. He is doing well. He had a slight fever last night and this morning, but not to worry.
Danielle the rec therapist is bringing him "stuff" to play with . We have a cd player for his hip hop music, we have a bright light and a massaging pig.
Anthony is so happy to be up and out of bed. He does so much better when he is in the middle of things. Hmmm, with our family, why am I surprised. After all, he is the great grandson of the "original go-go girl". The family would understand that one.
Well, I will try to get on the computer tomorrow and give more update. Other than that, keep those prayers coming....

Love everyone...have a great day....

Sunday, April 11, 2004 3:55 PM CDT

Happy Easter Everyone...Anthony is in his own room now. THe little prince. He is doing well. He is at Gillette Hospital Room 457A. The staff has been so wonderful. From the Doc's to the housekeeping staff. You truly have to be someone special to have anything to do with children's hospitals.

I have put a picture of Anthony before surgery on his site. I have a picture of him in his hospital bed with the tubes, but not everyone has a strong stomach for those things.

In the picture he is saying"...thank you all of my family and friends for all your prayers and thoughts. I love you very much..."

Have a great day...love to all...

Saturday, April 10, 2004 8:33 PM CDT

Tomorrow Anthony will be in his room and out of PICU. He will also have quite a few tubes taken away. Dr.Koop was in this morning, and said he is doing great. He seems to be resting comfortably and isn't exhibiting pain very much. We do have control of his morphine drip, so when we see his heart rate go up or he starts to get agitated, we press the button. He then relaxes and rests.

Well, everyone have a glorious Easter. Thank the Lord for all he has done for us.

HAPPY BLESSED EASTER

Saturday, April 10, 2004 11:20 AM CDT

Good Morning
Well, we are sitting in the lounge right now because they are pulling the breathing tube out. Anthony is breathing on his own and doing well.
Had a great night. Will write more later.

Thank you all for all your prayers. Anthony is definitely proof of how prayers work. Have a great day....

Friday, April 9, 2004 9:25 PM CDT

No change. The respirator is doing most of his breathing because of his sedation. Everytime someone bothers him, he adds his own breaths in. All in all, he seems very comfortable sleeping and recovering. Joe and I will most likely spend the night here, tomorrow they will experiment with removing the breathing tube. They need to find a delicate balance between breathing on his own and the respirator and adjusting his pain meds.

Have a good night and will send another update tomorrow when we get up.

Love to all...

Friday, April 9, 2004 4:11 PM CDT

Anthony is in PICU. He is going to be sedated all night. He has a lot of lines going in all over his body, and he was starting to wake up and of course he wanted to pull them all out. Not a good thing to do.
He is doing well. He isn't showing that he is in pain. Heart rate and blood pressure looks good.
I am going to go back in with him. Will write more later.

Friday, April 9, 2004 1:57 PM CDT

Ok here is the "scoop" from Dr.Koop. Anthony is out of the surgery part, did VERY well and is just with the anesthesia guys. Should be in icu soon. His curve went from 77 degrees to 93 degrees in the past 6 months. It was a perfect time to do this. Dr.Koop said we could be in the 50's. Yeahhhhh!
He did have to have a transfusion. But only to keep his blood "beefed up". The usual blood loss in this kind of surgery is 20 - 40 percent. He lost 15 percent. Is that great or what?
Well, I want to be downstairs when he gets out, so I will write more later.

Love to all....

Friday, April 9, 2004 12:08 AM CDT

Hey everyone...just got another call. They will be closing up in about 25 minutes. Dr. Koop should be coming out to see us within the hour. The nurse told us that things are going really well. She said on the call before this one that they haven't had to give him any blood. That is good because they said this surgery was supposed to be bloody.
Good Friday...Good News all around. I will write more when I have more info. Give Glory to God....

Love to all

Friday, April 9, 2004 10:21 AM CDT

me again...Nurse just called and told us they are doing well. Two hours into the surgery and he is going strong. They are just cutting into the muscle now. Sorry about that to the weak of stomach. Just wanted to let you know what is up.
Will write again when we get our next call.

love to all....

Friday, April 9, 2004 8:13 AM CDT

Anthony just went into surgery. I went in with him until they put him to sleep. I will try to keep you updated on what is going on. I took a picture of him after his xray this morning, so I will try to get it in the photo album. Be back later. Going to get some breakfast.


Love to all

Thursday, April 8, 2004 5:42 PM CDT

Well, tomorrow is the day. We have to be in the hospital at 6:30AM for an xray, then go down to surgery. The surgery should start around 8AM and run for about 6 hours. We will have a pager on us that Dr Koop will call us on and keep us informed on the progress. When he does, I will try to get on a computer and give updates in the journal. Maybe I will contact one of the kids, and let them write in the journal. Anyway, we will keep everyone abreast of what is happening.

Please keep Anthony in your prayers all day. Thank you so much.


Love to all....."...the Lord is my shepherd..."

Monday, April 5, 2004 10:27 PM CDT

Well, today we got the go ahead. Anthony's labs were really good. He is also 66 lbs. He looks so healthy.

We went to his swim group this morning. He just loves the water. I have put some pictures I took at the pool. Hope you all like them.

Again, I want to say thank you for all your thoughts and prayers. Friday we need to invade the heavens.

Have a great day and please keep checking in on the site. Love to all.



"...Let the light of your face shine upon us, O Lord."
Psalm 4:6

Friday, April 2, 2004 9:42 PM CST

I hope you all know that Caroline is kidding. (for those of you who don't know Caroline's humor...she is a kick)

Anthony is getting chubby. He weighed in at 64lbs on Monday when we went in for his bloodwork. We haven't gotten results yet, our pre op appt is Monday. We will find out then.

Monday morning I am taking him swimming at Courage Center. I am taking him because he won't be able to go for a while after surgery.

Well, one more week. Good Friday is the day.

I will definitely write more next week and while Anthony is recovering in the hospital. I am sure everyone will be anxious to read the journal then. I will also get some pictures of him.

Have a great weekend. We are going to get the garage cleaned out. 60 degree weather.. Yeah!!!! Don't forget to turn clocks forward.



"He has told you what he wants, and this is all it is: to be fair and just and merciful, and to walk humbly with your God"...Micah 6:8

Friday, March 26, 2004 6:40 PM CST

Ok guys...very funny. Hey, I look forward to my confrontations with the insurance company. Lately, it's the only aerobic exercise I've been getting.

Well, Monday is the day..I guess I can call it our own special "B Day". :) I think we are going to beat it.

Anthony is healthy and happy. We are biking in our 70 degree weather. I am so happy it is finally here. IT'S SPRING. I better not gloat. We still have 5 more days of March. You never know.

Have a great weekend everyone. We will!!!!


Dear God, grant that we may be signs of your love in the world.

Tuesday, March 23, 2004 2:55 PM CST

Ok...Caroline is just what I need!!! She can always put a smile on my face. She is going to hate this, but God really blessed me with great kids...

We are just in a holding position right now, and getting fat. Monday we will be going in for bloodwork. Time is getting closer.

Have a great week. love to all




We hold our children's hands for just a little while;
Their hearts forever...

Saturday, March 20, 2004 8:41 AM CST

Things are going very good here. We weighed Anthony by having me hold him on a scale, and we think he might have gained 7 lbs. On him that is a lot. He isn't even fitting into his back brace. Little chubbo!!!

Well, we are getting close. Just a couple of more weeks. I am a little anxious, because I worry about how much pain he will be in. I hope not a lot. They said they would be very concious of pain management. I try not to think about the actual surgery too much, but I have put everything into the Lord's hands. It helps quite a bit, but I am still a mother and just knowing what he will be going through, hurts my heart. I think it is the fact that we cannot explain to him what is going to happen. Oh well, now that I have brought everyone down with me....sorry about that.

On the upsweep, I am getting his graduation announcements organized to send out and planning his celebration. School is out this week, so they brought over his bike, and we have it at home. We took him out on it around the block, and he was in heaven. He just loves that thing. I am in the process with a vendor and the health insurance company to try to get one of his own. Hope it works. You would think, ...oh how expensive can a bike be...? Well, when you are looking at something that is adaptive, they get as much as they can. Believe it or not, that bike is a little over $700.00
So hopefully, I can sweet talk the insurance company into getting it for him.

Well, gonna get onto my daily chores. Everyone have a great day, (week, if I don't get a chance to write...)



...So that at Jesus' name every knee must bend in the heavens, on the earth, and under the earth, and every tongue proclaim to the glory of God the Father: JESUS CHRIST IS LORD!
Phil 2

Tuesday, March 16, 2004 10:16 PM CST

Today Anthony turned 21. Well, Dr.M.Owens, at Upstate Medical Center, what do you have to say about that?!
He was the dr that said he wouldn't make it, or have any quality of life. I guess AJ showed him.

Erin and staff had a birthday party for AJ at school. I brought him up there and Erin made him a special stuffed shell lunch and Angie made him a Tiramisu cake. They sang happy birthday and then decorated his chair with crepe paper that his buddy Troy picked out. Orange. After that, a really nice girl from another class came in and took him on a power walk for 30 minutes around the school. There was a big sign on his chair saying "Its my birthday"
The teachers, aides and staff (women) put red lipstick on and gave Anthony a kiss on his face. He had lipstick kisses all over his face. I will try to get the picture in the album..

AT home we had our usual corned beef and cabbage meal for St.Pats Day and had a cake for Anthony's birthday. It was quite a day. Now we are going to have our last snack of the day and go down for the night. It was a long day.

God Bless and have a great day......
HAPPY ST PATRICK'S DAY.....


May the road rise to meet you.
May the wind be always at your back.
May the sun shine warm upon your face.
And rains fall soft upon your fields.
And until we meet again,
May God hold you in the hollow of His hand.

( an Irish Blessing )

Sunday, March 14, 2004 2:43 PM CST

Again, nothing special about the past few days...Anthony is doing great. We were supposed to go to school on Friday to bike, but his schedule got messed up, so we didn't go. We are going tomorrow.

We are just working hard and praying that everything works out for April 9.

Everyone have a great day....Love you



"...I am the way and the truth and the life. No one comes to the Father except through me...."
John 14:6

Thursday, March 11, 2004 11:12 PM CST

Today was Anthony's first day homeschooling. At school they have Star program, where the students actually go to work. They have to punch time clocks and everything. In there, they do things like crush cans, cut paper to make notepads, use the ellison die cut machine to make die cuts, etc. Erin brought over a paper cutter and a stack of paper and Anthony had to put his time in. He (with Erin) cut paper today and folded them. Then he got to stretch on the wedge and listen to his radio. (spoiled kid!!) I did notice that he has Erin wrapped around his little finger. Then again who can resist that smile and dimples...Another picture in the album.

Tomorrow we will go to school for more bike riding. Everyone have a great day.....




"Come to me, all you who are weary and burdened, and I will give you rest.
Matthew 11:28

Wednesday, March 10, 2004 3:44 PM CST

Today was our first day of "home schooling". We are going to school Monday, Wed, and Friday so Anthony could ride his bike. It is his most favorite thing to do, so we thought 1 hour/three times a week wouldn't expose him too much. Also, I am the one who takes him on his bike ride. You should see him. He really loves that bike. We are going to try to get him one at home. Then after the ride, we went into the classroom and did a little stretching on this swing that hangs from the ceiling. Erin, his teacher, has a way of stretching his legs on the swing that he thinks she is just playing with him. She is amazing. Of course, everyone said they missed him.

So check out our photo album here. Tyra the PTA took some polaroids to put on the website. Enjoy.....

Have a great day...love to all...


"May the words of my mouth and the meditation of my heart be pleasing in you sight,
O Lord, my Rock and my Redeemer."
Psalm 20: 1

Tuesday, March 9, 2004 11:57 PM CST

Nothing new to mention. We are working on getting Anthony ready for his surgery. Denise from Dr Koop's office called today to make sure everything was still on schedule. As long as his bloodwork is ok, they will operate. We have to have him drawn March 29. Everyone keep him in your prayers.

Again, thank you everyone for all the great notes. It really means a lot to us. I am going to print them and read them to Anthony. Have a great day...



"But if it were I, I would appeal to God;
I would lay my cause before Him.
He performs wonders that cannot be fathomed,
miracles that cannot be counted."
Job 5: 8-9

Friday, March 5, 2004 8:42 PM CST

We didn't write in the journal yesterday, because the past 2 days have been a little boring. Just trying to get Anthony on a schedule of eating.

Thank you everyone who has given us ideas on nutrition. I am going to buy a juicer and get some green leafy veggies. Use it for the liquid in the food I have to grind. Cool?!

Have a great weekend. You are in our thoughts and prayers.




You are the one who put me together inside my mother's body, and I praise you because of the wonderful way you created me.
Everything you do is marvelous! Of this I have no doubt.
Psalm 139

Wednesday, March 3, 2004 5:44 PM CST

Well, we have made the decision to keep Anthony home from school until after his surgery. There are quite a few kids in his class that are sick, so we don't want to risk him catching something. I spoke with his teacher today and she said he was eligible for home schooling. So she is going to come to our house for an hour a day with his school equipment. She may also bring his bike that he absolutely loves. We are trying to get one through our insurance because that is the only way we can get him to do range of motion with his legs. Katie and Nikki would know what I am talking about...Yes?

We need to give him extra nutrition, so it would be easier if he were home so I could feed him small meals all day..Anyone have any good nutrition ideas? I am going to try the spinach thing. We are getting a juicer and mix with food.

Anyway, he won't be back at school until late april or early may. We have rescheduled his surgery for April 9.

Have a great day....



" 'Therefore, do not worry about tomorrow, for
tomorrow will worry about itself. ...' "
- Matthew 6:34

Tuesday, March 2, 2004 4:50 PM CST

Anthony was home from school today because he is just getting over his cold. Of course, I think he kinda likes the extra attention he is getting.

It is so great reading everyone's notes. It gives Joe and me an extra push. We really appreciate it. What a great support system we have... THANK YOU THANK YOU THANK YOU!!!!!

I hope you are reading all the notes from all over. Even Rome, Italy...What great family and friends. We love you all.


"...On Him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
2 Corinthians 1:10

Monday, March 1, 2004 11:33 AM CST

Well, I haven't written in the journal for a couple of days because Anthony had a really bad cold and cough this weekend. I was up all night on Saturday. That poor baby, he was coughing so much that even cough syrup with codiene didn't work..so I had him on my chest so he could sleep.

I got a call from Dr Deb this morning and she spoke with Dr Koop and we are going to have to postpone the surgery until the begining of April. They are concerned with his bloodwork results and want us to "beef him up" to give him a better advantage for healing.

This is what I mean about having Drs that you can trust. We had that with Dr Maerz in Utica and when we moved out here, we had to really look for that kind of dedication. They don't do things just for the sake of doing it.

It took a lot to get up the courage to schedule this surgery, and now I have to wait a little longer. Oh yeah, ME..ME..ME.. Ok, got that out of my system. Now lets get back to work..We have 3 weeks to get Anthony in shape. Lets go.

I ask for prayers for Anthony and a little something for me too? I need a little extra strength. Only the Lord can help me with that.

You can still write on his webpage....

Love to all


The Lord is my strength and my shied;
my heart trusts in Him,and I am helped.
My heart leaps for joy and I will give thanks to Him in song.

Psalm 28:7

Friday, February 27, 2004 10:11 PM CST

Fast note. Dr. Deb called and Anthony's bloodwork was great except for his hemoglobin. That was a little low and because during the surgery he may lose a lot of blood, she wanted to talk to Dr.Koop. Dr.Deb hasn't done a lot of pre op's for this kind of surgery, so she said she wanted to be absoultely sure. I am so confident in our doc's. We will find out for sure by Monday. Good night...


"A cheerful heart is good medicine..." Proverbs 17:22

Thursday, February 26, 2004 11:34 AM CST

In case some people don't know, the caricature on this page was done of Anthony in Mallory Square in Key West, Florida. We were down in (if I am not having a senior moment) 2001. There was a young man drawing in the square. Joe and my brother David brought Anthony to have his picture done and came back with this. I love it, because it really captures his personality. The person who did it said he is married to a pediatrician who did her residency at Chop, Children's Hospital of Philadelphia, where Anthony had most of his surgeries. Coincidental, I think not....!!!!:)
Everyone have a great day...


"Blessed is he who has regard for the weak;
the Lord delivers him in times of trouble." Psalm 41:1

Wednesday, February 25, 2004 5:37 PM CST

Thank you for all your sentiments in Anthony's guest book. He IS a little toughy. We are making all his arrangements for his prom on May 12. This way we won't have to do a lot of last minute things when he gets home from the hospital. Hope everyone likes the picture on his page. I will be putting some photos in the album on the site. Enjoy. Love to all.

Tuesday, February 24, 2004 10:55 PM CST

today i took Anthony for his bloodwork. He did really well and they only had to prick him once. There were 4 of us holding him down and I was happy to see it was fast, considering they took 5 tubes of blood. But they did give him stickers for being so good.
When we got back out to the van, a lady in another van pulled up and asked if that was Anthony. Apparantly she worked with him in middle school and she wanted to say hi. She got into the van and started rubbing his head. She said that Anthony taught her how to get rid of headaches. She rubs her head. When she was leaving she said thank you for letting me say hi. It was so cute. There really are angels out there. Look for your angel today. Good night.

Tuesday, February 24, 2004 10:35 PM CST

Today we went to the lab to get bloodwork..Anthony did so well. It took 4 of us to hold him down, but they only had to prick him once. YEAH. I feel so bad when he has to be stuck more than once. He has no idea what is going on, so when it is fast, I am so happy for him.
When we were going back out to the van, a lady in another van pulled up next to ours and jumped out of the car and said "...is that Anthony..." It was so cute. Apparantly she worked with him in middle school. She said he taught her how to get rid of her headaches. By rubbing her head. That was funny. She even got into the van and started rubbing his head.
When she got out, she said "thank you for letting me say hi". You know, there ARE angels out there. Look for your angels today...goodnight.

Monday, February 23, 2004 6:47 PM CST

well, today we got notice to go have anthony's blood work done. we have to go tomorrow and then Dr Deb will let us know if Anthony has the go ahead to do this. He will be having spine surgery. His spine is 77 degrees bent at this time. Dr Koop said that we may get it to 50 degrees. He said it won't be perfectly straight, but then he won't have to wear a brace. That in itself is going to be great for him.
We ask everyone to pray for him. His surgery will be March 9, 2004. I will keep this updated as much as possible. Hopefully, every day that he is in the hospital. We will have access to computers. How cool is that.

Monday, February 23, 2004 6:39 PM CST

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