CONNOR'S NEWS!!!!!!!!!!!  
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Posted by Charla Schriever on 11/28/2006

  I am so sad right now I may not even make sense. And you most likely wont even understand what this means or why I feel so sad. Connor's CF doctor called and Connor has cultured pseudomonas :( That is so sad you don't even understand. I feel like a failure to my son. I mean I try so hard to keep hin healthy and I clean everything! And we use Purell all the time! I don't let him play anywhere that pseudomonas can grow. I just don't understand. Basically, it means this is his first really bad culture and it only goes down from here with is lung damage. This is something I have been working VERY hard to not have him get. SO now he will take an inhaled neb called Tobi for 15 minutes twice a day for a month on and then a month off, month on etc.....for how ever long the doctor feels. It could be forever, or a miracle could happen and the pseudomonas "PA" will go away and then we will stop I believe.   He also is takng another antibiotic for a couple weeks that is just a liquid. For me I feel like this is the beginning to the end. If this treatment isn't working, then he will go into the hospital for IV Antibiotics for 2 weeks. So please remember him in your prayers that this treatment that we can do at home will work! :) I am trying to stay possitive, but I am mad, sad, guilty, and feeling like a failure. I hate this stupid disease!!! Sorry for venting. Connor is doing a treatment and I am looking at him wanting to cry. I better stop typing now, I think I am putting my feelings on you guys enough.

 Now here is Connor's new treatment list.

Morning: Albuterol in Neb
              Pulmozyme in Neb
              Tobi in Neb
Evening:   Albuterol in Neb

SO now it takes over 2 1/2 hours to do treatments! Poor Connor Boy!!!

We used to do the neb while doing the vest, but the doctor said that it will work better for the Tobi if we didn't, so now that will take longer, but it is worth it if it helps Connor even a little bit!!!!!!
Thanks for listening vent about how I am feeling. I hope you all are doing well. We love you all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I will keep you all posted on how he is doing. So far he has been on this meds for one week, but I haven't noticed a difference. He is still acting sick and coughing and fighting meds and treatments. Oh I would give my life to make this better for him. AHHH! I HATE CF!!!! Anyways, we see the doctor in 3 weeks, so hopefully things will change for the better.


Dec. 2nd update:

Well Connor was doing all his treatments great, but he caught this bad sickness we all have. Poor guy was feeling so bad. Because of the throwing up I didn't give him 2 treatments, but being scared about it with him having PA I wanted to give him his treatment last night. Yesterday he was doing great and keeping gatoraide down and some bread and snacks. So I had him do a treatment. I made the vest go on a very low setting, but at the end of the treatment Connor threw up everything. I felt soooooo bad! I know how important his treatments are, but also I knew he had a sick tummy. :( It is sooo hard! So the vest was fun to clean :) Well, today Connor seems to be 100% better. I think tonight I will just do the breathing treatments and wait one more day for the vest. Please keep him in your prayers that this PA clears from his lungs and wont cause anymore damage!!!!!!!!!!!!!!

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RE: Sad News!!! Connor has

Posted by AMY TAYLOR on 11/29/2006
Cheer up Charla! We all feel the same as you do about CF! Just keep a positive attitude about things!  If you need to vent or cry feel free to give me a call day or night!  Always remember you have never failed him as a mother!! He is lucky to have you as his mommy!   Hopefully the meds will kick in any day now!!  TTYL  Give the boys hugs for me!
RE: Sad News!!! Connor has pseudomonas :(

Posted by Great Grandma Taylor on 12/02/2006

Hi Charla,

Grandpa and I just read your message about the latest on how Connor is doing.  We are so sorry that he has had to go through all of this but we have him in our prayers every day and have faith that he will keep improving and the medicine will do the trick for getting him well. We also put his name in the temple and my brother and his wife in Idaho put his name in the Idaho Falls temple.  You can see that there are many prayers being said in his behalf.

You said that you feel like a failure and not a good mother.  You shouldn't feel like that at all.  You have been the best mother possible, doing everything you possibly can to take good care of Connor.  Both you and Matt have been the best parents and it is easy to see that Heavenly Father knew that you would take good care of that little spirit that he sent to you. You have a difficult thing to deal with, having a child with CF, but you have done such a good job so far and we know that you will continue to do so. Just try to think positive and take care of yourself also.  Your little boys need a healthy mother to keep up with everything that they need.  They are lucky to have you . Matt also needs your support as he has the big job of finishing his law degree this year and getting ready to start his law career. Your life is not easy right now but it will get better and we know that you can handle even the hard times.

Always remember that we love all of you and like I said, you are always in our prayers.

Lots of Love,  Grandma and Grandpa








RE: Sad News!!! Connor has pseudomonas :(

Posted by Paula Jones on 12/02/2006

Hi babe:

It's me, mom.  I know that there's nothing I can say to help you feel better with all that you are going through with Connor.  We, your family and friends have you and your famiy in our hearts and in our prayers constantly. 

I do know that when your child is sick, hurting, etc., a mother is also sick and hurting inside more than ever.  We love our kids, we do all we can for them, and sometimes, there is nothing else we can do except continue to love and take care of them and just talk to our Heavenly Father constantly and put it all in his hands.  He knows our love for our children, he knows that we do everything we possibly can and he's there for us and them especially when we don't know what else to do.  He will show you, He will heal, he will give you peace.

Connor loves you and is so lucky to have you as his mom.  I've watched you and Matt a lot and am so very proud of how responsible and loving you are to your boys.  In no way are you a failure.  One can only fail when one stops trying.  And, you will never give up because that's not you.  You are a very loving wife, mother, daughter, grandaughter, sister!!!

I love you babe, and I know that you and Matt told Heavenly Father that you would be there for Connor, take care of him with His help and give him and Mason the most loving home.  And, YOU ARE . . . . 

SMILE AND KEEP LOVING YOUR CHILDREN.  Remember it's not going to be easy, but worth it.

I love you babe,




RE: Sad News!!! Connor has pseudomonas :(

Posted by andrea kibler on 12/06/2006

hey sweetie! I'm very sorry to hear about the bad news! my heart gos out to you! i wanted to cry when i was reading it. but i know that you are a strong woman and a great mother! i will keep him and your family in my prayers. As a mother i can only imagine what you are feeling, but also know  that you have to be strong and healthy to be able to take care of him. you cant beatup on yourself, you need to know that you are doing the best you can with whatever god puts out in front of you! and thats all the power you have. god will take care of the rest!! I Love and miss you! you will overcome this and make your big move to be closer to your family, and some day soon i will be able to met your beautiful family :) take care and if there is anything you need that i can help with PLEASE let me know!!!!! love you all


RE: Sad News!!! Connor has pseudomonas :(

Posted by Krista Kenner on 12/11/2006

Hey Lala~

I am so sorry.  I wish I could jump on a plane like last time and help you and the boys. You know if anything happens I will be on the next flight out there.  I love you and I think you are an EXCELLENT mother.  I know there isn't much to say and there aren't any words to make this better but you have so many people who love you and your family.  Love you girl

Krista Kenner

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