Journal History

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Saturday, December 29, 2007 4:16 PM CST

I trust all had a great Christmas, I personal missed having snow, but it all went well. There is always that someone special missing as the boys open their gifts. It has never felt the same since Christina went to Heaven. Maybe someday it will all change. Who knows

Stephan had an MRI on the 26th and the next day we went to Dr Wheeler for the results and it looks like he is going to need some more sinus surgery again. The cyst that he has is unchanged, thank GOD, and there was nothing else growing. However; it looks as if he has quite a few polyps with in his sinus cavities. Not sure has to how many and exactly where they are, but.....

So we have to see his ENT (ear, nose, throat) doc on the 15th to see what we are going to do about it. We believe it will be surgery again, but will know for sure when we see her.

Thanks for checking up on him, and don't forget to sign the guess book

Sometimes I wonder if all this "sickness" will ever end. I mean I am thankful for good doctors, but it would be nice to see them outside of the office


Have a great day

Saturday, November 17, 2007 9:13 AM CST

Wow it seems like forever since I did anything in here. Okay it has been forever since I typed anything here.

Not a whole lot is going on really. The boys are in school and doing good. Stephan is holding his own health wise, we still have a struggle with him taking his meds. For what ever reason he does not like to take them. I need to call and get him scheduled in St Louis, I canceled his last appointments.

Yesterday Stephan slip in class and hit his elbow on the teacher's metal desk and for a while it looked like he broke it or something, finally I took him for xrays and as far as they were able to tell it is not broke, however they need to have someone else read it, just to make sure there is no damage to the growth plates. To b-}e honest I am totally surprised he has not broken any bones yet as much as he likes to jump and goof off, I promise at times I just hold my breath, lol. BOYS :-}

Josiah will be turning 16 next month, on Christmas it is hard to believe that he is starting to drive and all. He is now standing at a good 6' tall, I am still amazed how much he has grown this last year.

A week from today will be my baby girl's 4th anniversary in Heaven. I am not looking forward to next Saturday. For whatever reason I always want to get away from here on that day. Not sure if I will be able to this year or not. I try to imagine her as a teenager and all but I just can't, like when we go to Walmart and I see a cute outfit, I would imagine her in it, and then stop myself and think that a almost 15 year old would not want to wear something that is ment for a 10 year old :), but still it is hard to picture her growing up. I guess she will forever be 10 in my hearts mind. I miss her sooooo much!

I had an idea, and if anyone reading this who has lost their child before or after Christina left me, and they want to chat to help make it through the holidays, will you please email me and maybe we can set up a time where we could do a community chat or something, I have AOL/MSN/Yahoo chats so I think that covers just about everything. I would love to hear from some of our past friends, and even if you have not lost a child but have been through what seems like hell and high waters with health issues, etc and want to chat just email me

mcreynoldslori@yahoo.com

Well I guess I need to get going and get some breakfast made for the boys.

I hope you all have a great Holiday season.

Love,
Lori

Wednesday, July 4, 2007 12:14 AM CDT

Hello, well I promised another update for you so here it is

We did our pulmonary (lung) function testing yesterday and he is down about 10%, I am not happy with that. When we saw the doctor she was not overly alarmed. However she still does not feel that his asthma is controled and wants to try a couple of things. One being adding another inhalor for when he is active, so he will take two inhalors before he were to ride his bike, or go outside and play or whatever. And the there is a shot that they use on some kids who can not seem to get the asthma under control. See Stephan as exercise and allergic induced asthma, and seeings how he is allergic to everything, well it is harder to control. This shot is very costly and insurance will have to approve it first. He will get it every one to two weeks. And the hopes are with this is that with in the next 6 months we will beable to lower his medication doses. He is totally maxed out on his meds, and there is nothing else he really can take. And with family history they want to stay on top of things.

So that is where we are, he is not too thrilled with the idea of a shot but we have to do what we have to do...and I think he understands that even though he complains alot about it.

Our plans today are just to chill at the RMH, at 3 there is to be some eagle coming that is part of the Airforce, and then a barbeque this afternoon. So at least he will not be totally bored.


THANKS SO MUCH

Sunday, July 1, 2007 10:39 PM CDT

Hello from STL

Yep we are here again. Stephan went to heart camp last week and had the time of his life, he really enjoys going, in fact said he was excited about next years camp.

Starting tomorrow we have doctor's appt all week. First with GI, not sure what all is going to go on there we have a couple issues I want to talk about, like 1-he is starting to wake up with a sore throat again with a lot of throat clearing throughout the day and 2-last week we have some rust color stools, not to sure what to think about it. Then after GI we have speech therapy and that is like an all afternoon thing

On Tuesday I am not sure what we have going on, I think it is pulmonary and then Weds being the 4th of July nothing, and then more docs on Thursday and then home I pray. We will see how it all goes

Today we went to the Zoo and it all by wore him out, his legs hurt I think he will sleep sound like a baby infact he more than likely will be asleep when I get back to the room.

Oh one more thing I am not sure who to talk with about this, but yesterday he was going down the stairs and fell down then 3 times within 30 minutes, I guess neuro is who I need to talk with, but will mention it to all the docs to make sure they are all on the same page.

Well I know this is short, but thought I would do a quick up date, will try to get another one in here soon.

Oh yeah, Childrens is not ready (if ever) to start a mentoring program for the lung transplant program, basically because of HIPPA issues. But we will see

Have agreat forth

Tuesday, May 22, 2007 7:50 PM CDT

Wow it has been like a month since I did an update

This is the last week of school and I will say that boys are happy about that. Not to sure how I am feeling, lol.

For some reason this is always a hard time for me. I guess it is because with the end of school comes awards/trophies/graduation. And it is hard to think that my little girl will never again walk down and receive a silly trophy for something she did at school or she will never walk down to receive the diploma that her bothers will one day receive. And of course all the excitment with the end of school and the last week activities, she loved to have the fun the kids have at school.

But then I look at the whole picture and have to smile because she has received her trophy and her "diploma" only a far greater one than we have or will receive here on Earth.

Stephan is on crutches. He seemed to have sprained his ankle good and also the growth plate on his left heal is inflamed and cause a great deal of pain when he is walking on it. So for the next two - three weeks he will have the crutches. Not so much fun when there is so much to do at school this week. Thursday is going to be a bummer the school is going for the annual Jolly Mills Park picnic and day in the sun. The kids have a day to run/fish/have water fights, or whatever they can think of doing. He will have to try to balance it all with his crutches. Also, tomorrow at school will be the merit day, and teachers are going into a dunk tank and will have pies in the faces, :D. Then comes the award/grad night when the students all march in and onto the platform. Stephan will have to start on the plateform and await the other children to come in and then he will go down when they do. Oh what fun :D He can't get over how the crutches bug his arm pits. He does keep things exciting around here lol.

Well I guess that is about all there is right now.

Oh wait...

I am working with STL Children's and trying to get a mentoring program started for those children's parents who are pre/post transplant and or on the IV medication FLOLAN, the med Christina was on before her transplant. I did send Christina's story about her being on Flolan to STL, and hopefully something will come of it. If anyone wants a copy of it just send me an email and I will be happy to email a copy to you :D

Well hope all is well with you and yours. PLEASE DON'T FORGET TO SIGN THE GUESS BOOK, I LOVE READING/HEARING FROM ALL OUR FRIENDS WHO STILL COME BY,

Tuesday, April 17, 2007 8:41 AM CDT

Well it is now April 17th. And finally the sun is shining and bright. Could it be that spring is coming to the mid-west? I hope so...

Well there is really not a whole lot going on here right now and trust me I am not complaining at all. The boys are doing fine. Stephan has had only a couple of headaches, and Josiah's ear is going to be fine, thank GOD.

I often time wonder what our lives would be like if Christina was still here. What if she was born totally healthy or if she was still sick like she was. What would our routine be then? But then I realized that to dwell on the "What if's" is a waste of time. What about now. What are we doing now.

You know Christina has reached the mile mark that we all hope to reach someday. Heaven. I was talking with my pastor and his wife the other evening, and we were talking about how many lives Christina touched for her Lord. I remember the evening she prayed and asked Jesus into her heart. (She had on her pink dress with the white lace collar and white sash, and her IV pump acrossed her) Her words afterward were, and I quote; "I feel like I had a bath on the inside". What better way to explain God's amazing Salvation. To be bathed on the inside. Christina had no "major" sins in her life, yet she knew at 6 years old that she needed a savor, and that without Him she would be lost for eternity. No one even talked with her that night, she just said she wanted to pray and ask Jesus into her heart, and with child like faith, not trying to figure it out, she received the greatest give anyone could have. And because of that child like faith she is today in the presence of One so mighty and great, and not fearful either, but with joy and happiness. So all the "what if's" are for nothing and really a waste of time.

I guess you could ask, "what if she had not prayed and asked Jesus into her heart"

One of the things Christina was always so worried about was when a child she know past away, her first question was "Did they know Jesus?" She felt the sorrow of losing a friend, but she knew that one day if they knew her Savor that she would see them again.

WOW I did not mean to get preachy, but I guess it was on my heart so I felt like sharing.

So, anyway I have purposed in my heart, and with the help of God, not to question the "what if's" of life any more. I will just have FAITH in knowing that God is in control and He knows what is best for me.

FAITH = Full Assurance In The Heart...

Hope you all have a great day

And stop by and say HI

Thursday, April 12, 2007 9:59 AM CDT

Well, we are home :D

Stephan is doing okay, he did have a head ache last night and took a while for it to go totally away, even withthe Imitrex. But we will just keep watching him

WOW tomorrow my baby girl will be 14 years old. It is so hard to imagine her as a teenager. And I am sure that she woul dhave been a beautiful girl. With just the right hair style and all. :D

I heard this song again, "Butterfly Kisses", it so fits Christina and her daddy. She was and always will be daddy's little girl. I can picture in my heart's eyes her giving her daddy butterfly kisses even as I type this. She was the jewel in his eyes. I only wish that I where able to see them now.

i am so filled with so many emotions today, not quite sure how to explain all I am feeling. I miss her so much, yet at the same time I am happy for her. If that makes sense at all.

Stephan and I talked about her and all she went through on the way home from STL. I told him that I have had people in the past question me as to if I would have done things different and I told him NO. He was in total agreement with me. He said that if we did not do all we did do she would not have been with us as long as she was. Another thing the surprised me was the fact that he said if he ever needed to go through a transplant he would do it. Just like Christina. At times I am so amazed at him, it seems like he is growing up before my eyes, but yet then at times he is still my baby boy. But I guess he is 12 now so.. lol

Anyway, tomorrow is Christina's birthday so if anyone wants to send her a pink balloon that would be totally awesome. I am of course going to be sending some to here too.

Well I know this is short, but have to get things done around here, it is amazing as to how much cleaning needs done, even when you have been gone.

So stop by the Guess book, if you wish and leave a birthday greeting to Christina. Have a Great Day

Lori

Monday, April 9, 2007 8:54 PM CDT

Happy Monday

Well we will be leaving STL tomorrow, thank God.

The doc today says that Stephan does indeed have migraines and started him on a new med and we are to keep a two week diary as to what happens with it and if the med is working fast, if not then we will up it and add another, and then if that does not help he will have to go on it everyday for prevention. So pray it works, poor kid is already on enough stuff each day for allergies/asthma. (We had to wait almost 6 hrs today for insurance to approve the med, it cost about $250 for only 6 doses --ouch)

Sometimes I wonder what all this is about, how is it that two of three of my children have had medical problems. I am very thankful, don't get me wrong for the wonderful help they have received and that Josiah my oldest is healthy at 6' and 166 lbs and that Stephan is not as sick as he may have been. But you know it gets to be a heavy burden at times to carry.

It was a little hard today as we were at the hospital I saw a couple kids who were transplanted around the time of Christina's transplant and they seem to be doing fine, then of course the questions start coming in what is it that we did wrong, did we do all that could have been done.

On Friday she will have turned 14 years old. WOW it is hard to imagine my baby girl at 14. Stephan said today that it makes him feel little thinking of Christina as 14, cause he only just now turned 12 :D. He questions things about her alot, like today he asked, "Momma, if Christina was still with us, do you think she would have grown any. How tall do you think she would have been?"

I would like to imagine her at about 5' with long, wavy blonde hair, no puffiness anywhere, just her tiny little self (kind of like her pre-transplant pictures only older) if that made sence.

Anyway, I guess I need to go and get the laundry out of the dryer and get finished packing so we can go home tomorrow. We do not have to return until the end of June for Heart Camp and then the first week of July is full of doctors and therapy for Stephan. Can't wait...lol, okay well he can't wait for Heart Camp, he loves it so much.

So until later, dont forget to sign the guest book

Just me

Saturday, April 7, 2007 7:57 AM CDT

Happy Easter weekend

I trust you all are having a great weekend. Stephan and I are still in STL. He is going to see the neurologist on Monday morning. It was just an act of God that he got in so fast. When the girl first called me she said that the first opening would be sometime in April, and then she looked again and amazingly there was one for Monday morning. I was not surprised, I serve a God who works on the impossible.

So on Monday morning we well finally get an answer to his headaches I hope anyway. One think I was thinking of was if it is this cyst, it maybe growing. Stephan is at the right age for puberty to start hitting, and he is on a growth spert right now, even though he is only at the 25% for his age in his wt/ht, he has grown, the last visit here he was not even to the 25% mark. So if he is growing what is to say that the cyst isn't growing too. Makes sense to me anyway.

Well I guess that is all for now. I trust you all will stop in and say HI

Until I know more

Just me

Lori

Wednesday, April 4, 2007 11:42 AM CDT

WOW it has been like forever since I have done an update. I trust all are still doing well.

I guess I ought to say Greetings from St. Louis

Yep we are here once again with Stephan. He is having to see the doctors for update follow ups. I am concernbed however about the fact he has been having more headaches then normal. He was dxed with an archnoid cyst a while back before his sinus surgeries, and one of the symptoms with that is headaches. I am not sure if it could possible me that or his sinuses again.

I did make mention of it to the nurse to give his pulmonary doctor the heads up, we are scheduled to see her on Friday. Today is a free day, and tomorrow we see the GI doc. Then we should be heading home on Saturday. Unless they want to check the cyst thing. And you know me I would much rather stay here then drive home and turn around and come back. Even if it is a holiday.

Well I guess that is it for now. Let me know you have stopped by and I will try to give an update before I leave STL

Oh one more thing I am going to be talking with one of the transplant nurses about starting a mentoring program for those parents whose children are pre-post transplant and possible those who are on Flolan, the IV that My Christina was on pre-transplant

Have a great rest of the week. The sun is finally out here, hopefully it will warm up some it was cold and wet the last two days.

Later

Sunday, January 7, 2007 1:55 PM CST

Here is a brief update from MO. I trust you all had a great Christmas. We did in PA. It was awesome. God is so good to us.

I am trying to get a song to play on here so I hope it works this was one of Christina's songs she loved to sing on the many trips back and forth to STL. I miss my little girl so much, but I know she is so happy, and she is before the Lord praising Him and rejoicing in His glory.

Stephan is doing okay for now, was sick for a little bit but is doing better. We will be heading back to STL the end of January thru the first week of February. He will be seeing GI and his speach therapist fo rthe VCD

Keep stoping by and don't for get to let me know you have been here. I love still reading the guest book.

God bless you all this new year

Lori

Saturday, December 9, 2006 7:07 PM CST

WOW it has been almost a month since I did an update in here.

Well not a whole lot is going on right now. Stephan seems to be doing better. When we finally go home he was started on a new med and it seems to be helping his belly, and he is eating much better and everything. We did see that he had lost 5 pounds, and trust me he really can't afford to lose any. But thank God he is doing much better, thanks for your prayers

Well another year has past since Christina went to be with Jesus and her Daddy. I was not sure how this year was going to be, but God was gracious and it was not too bad. We did go to the bring her flowers and balloons, just as always, and we did eat at her fav resturant, El Charros. It was good.

Now that Christmas is approaching I pounder how much she loved it. She loved the snow and getting the tree up and especially getting all the presents on Christmas morning. I have a video of her last Christmas, she was so full of life, and was making us laugh so hard. If you have ever tried to Rap, "Away In A Manger", you will know that it is not that easy to do. But somehow Christina and Stephan managed to do just that. It was just too funny to watch.

I was also using my minds eye to imagine just what Christmas in Heaven would be like. I know you hear of people watching us from Heaven, but I really don't think that would be the case. I know if I were in the presences of one so Great, as our Saviour I would be worshiping HIM.. I know we talk about having a big birthday party in Heaven for Jesus, especially when we have a child in Heaven, but you know I can now imagine it as a glorious service, giving praise to the One for whose birth we celebrate. If it were not for the willingness of God to send His only Son to be born on "Christmas morning" then we would not have the joy of knowing His most precious gift ever, Salvation.

So in reality Christmas is about not just a baby being born in a manger long ago, but about God giving His best for us, to know that on the morning, He was giving us the gift of Salvation. So Christmas is about God seeing we needed a Saviour for our sins, and that the greatest price must be paid for them. He was willing to share His child with us. I so want to share my daughter with others. She always had a strong faith in God, even from a young age.

I can remember back in 96 when she was first dxed with her heart and lung problems and we were told that she would have maybe 5 years to live. On the way home from Kansas City she was in the back seat while my good friend Mary and I were in the front and out of the clear blue she would say, and not just once, but several times, "I want to see Jesus, I want to see Jesus Now", I never fully understood why she was saying that, but at that time it tore at my heart, knowing what her long term out come maybe. But she did get to see her Jesus, and she so wanted others to know Him too. I remember back in Dec of 01 when a little friend past away, all she told me was "that is so sad", but when she was talking with one of the Child Life Specialist at Children's her concern was, "did ---- know Jesus, did she had Him in her heart and is she in Heaven?" Christina was willing to pay the price that she knew she would have to pay to see her Lord, and to do her best that others too may know Him as she does.

So this Christmas I trust each and everyone who reads this entry will take a look on the inside of your heart, and see just what Jesus means to you. Is He you Reason for this holiday season, or is He just an excuse for some time off of work and for giving and receiving gifts.

As much as my heart aches for my baby girl, it is not for the suffering she had to go through, but it is for myself, and that I can't hold her in my arms. But if asked would I want to take her from the portals of Heaven just to have her here for my selfish reasons, NO, a thousand times NO.. She is rejoicing night and day with her Lord and all the ones she loves.

I want to wish each and every one of a very Merry Christmas.

Sunday, November 12, 2006 7:02 PM CST

Good evening from St Louis

So sorry that I have not done any updates in a long time. So I guess it is time to fill you all in on what is going on with our family and with Stephan.

First of all things at home are good. I have been praying a lot about quitting my job at the hospital and finally got the answer and did just that. I have been feeling and seeing that my boys were needing more of me, as most of you know they have had little of me over that last several years. So am very glad that I did quit and can be a full time mom. Now what I am going to do, that is to be seen, but I know the God I serve and I know the He will help meet our needs.

Last month I made a quick trip to Flordia, my oldest brother past away so it was not a fun trip, although it was good for all of us kids to get together again, most of us were there and I come from a family of 11 kids.

We spent most of September here in St Louis. We would be here and then go home for 4 days and then come back. Stephan has been diganosed with something called Vocal Cord Dysfunction (VCD) and what this is - is where the vocal cords want to close off, expecially during activity so he is being seen by all things a Speach therapist. He has to learn a new way of breathing and how to tell the difference between and asthma attack or the Vocal Cord Dysfunction and how to relax.

He has also been dxed with GERDs, or acid reflux and had some med changes.

Now for this visit, his pulmonary doc feels that for the most part his asthma is controled, however we have to make sure it is and that he has learned to deal with the VCD and then once all of that happens we will be able to start allergy shots, so we are looking at next winter to start, cause we really don't want to start them during the peak season, and for him it is spring, summer and fall. :D

Then we saw GI to deal with his GERDs and his chronic constipation, etc. She started him on some new med and said to return in January with some test results that Stephan had done while at home. So we were heading home on Friday morning, and made it about an hour when he started vomiting. So I called the doc and they said to come back to STL and to watch him. So we did just that, and well by 3:00 he was still vomiting, and by this time it had been over 10 times. So I called the doc again and off to the ER we went. And if you know ERs it is not a short trip, we waited in the waiting room for about 2.5 hours and then in the room until 2 am and finally he was sent to the floor. Still vomiting and now with runny stools. So he was xrayed, etc and watched. After receiving almost 3000 mls of fluid he started to pee. Talk about being dry.

He was discharged this evening, and we will stay here through tomorrow (Monday) and call to see if some of the lab results were back and how he is doing. Then we will head home on Tuesday morning, to make an appointment with Dr. Wheeler for a follow up. The big concern is knowing Christina's history with her emergency bowel surgery and praying that he does not have the same issues. As in Christina, none of her test (the many, many test she had) nothing ever showed up. For me it was watching him vomit, it brought back the many, many times that Christina would vomit from February 2003 through Nov 2003. I was so happy when he finally stopped. I will say that he is not quiet the patient that Christina was. She was brave, but hey she took after her mom lol :D

Well I guess that is all for right now. I promise to try to do better, I will work on doing an update after we see Dr. Wheeler next week.

Thanks again for stopping by, I can't tell you how much it mean to me that so many of you still remember us and Christina. Don't forget to sign the book to let me knwo you were here..

THANKS
LORI

So with all of this I am glad that I quit my job, I would not be there anyway. lol

Sunday, September 24, 2006 3:31 PM CDT

Well here I try again, for some reason when I am in St Louis it will not let me add an update?? go figure

First I Want to stop and say thanks to all who keep coming by to check up on us, it really does mean so much to me :D

Well we are home, arrived yesterday afternoon. So here is the new game plan for Stephan. He had seen the speech therapist and she was awesome in working with him. He has to learn new ways of blow out and empting his lung of all the air. Let me explain a little bit. When the vocal cords close off, there is no way for air to get into the lung. And when Stephan is running, playing, etc, or having an asthma attack his body realizes that he can't catch his breath, so what it does is closes off the vocal cords so what air is in his lungs stays there, however it does not allow for fresh oxygenated air to come in. Thus when they breath in you tend to hear a squeeky noise coming from his throat.

When learning to breath out, his is also learning to relax the muscles in his chest and throat, and by the simple act of blowing out the vocal cords open up. So he has several new things to learn and ways to learn to relax so that he does not go into a panic mode and not breath at all. We will have fun learning these different things, some of them even include just blowing bubbles, and getting a nice straight line of bubbles to form. Sometimes it is not as easy as it seems. Another is "Blow before you go" which means right before he takes off in running he should blow out all the air and then he will beable to get a good breath in.

There are a couple things that we are to follow up on here at home, on being she is concerned about how Stephan has a very sore throat every morning. A couple thoughts are that from when he had his sinus surgery, it opened everything up and the drainage is going down into his throat at night and irritating it while he sleeps, another thought is there could actually be some damage to the cord from when he was places on the breathing machine, during surgery, or he may have some type of gurds, or reflux issues. So if that is the case he will see a GI doc to see what we should do there, he is already on Zantac, but maybe we need something else. The next thing he will do is see a psych doc, (now don't freak out here) and she will teach him ways to help him relax, Christina saw her and she is good, and knows all of our beliefs, etc. She works with kids who have pulmonary issues, be it lung transplants, asthma or vocal cord dysfunctions. I like her. So we are "free" from St Louis at least through Oct and are scheduled to go back in first of November. So keep him in your prayers

Keep praying for our $$ too, I have been off of work a lot this month and right now am not really working for the next couple weeks either.

Saturday, September 16, 2006 1:24 PM CDT

Well here is the update, guess I should have done it earlier in the week, but I didn't so here it is :D

Tomorrow after morning service Stephan and I are heading back to St Louis. This is the 3rd trip in 3 weeks. Oh what joy...NOT...

It has been diagnosed that he does have VOCAL CORD DYSFUNCTION (VCD). The treatment for this (well one of them) is speech therapy. No he does not have any problem talking, just ask anyone who knows him lol. They will teach him a different breathing technique and how to beable to tell the difference b/ an asthma attack and a VCD attack. He will learn (hopefully) how to relax his neck, shoulder and chest muscles and thus relaxing the vocal cords.

What is happening is that during activity, ex. running, jumping on the trampoline, etc. his vocal cords want to close off, thus when he breaths in he is not able to get the air pass them into his lungs. Hence this feels like an asthmatic attack, he just can't breath....and we all need to breath (:D)

So tomorrow we will leave to go back to STL. Pray for us, my poor car is getting the miles on it. It seems funny how much this traveling back and forth so much is wearing my out, and when I think of how many trips we made back and forth with Christina, I don't know how I did it, outside of the grace of God and adrenline. We were in STL almsot every month from 2000-2003. I think there might have been a few months we did not have to go there. As of right now we will have October off from STL. We have an appt in November, but nothing next month, pray it stays that way, I have to work sometime.

Well got to run have a house to clean and clothes to re-pack. If anyone is near St Louis and want to stop by please feel free too, he will not be a patient in the hospital, just there during the day.

TTYL, and thanks for stopping by

Lori

Saturday, September 9, 2006 9:14 PM CDT

Well here is the goings on with Stephan.......

They are trying to change/add another inhaler to his growing list of medicines, poor kid. Also while in STL he had to do an exercise challenge, this is where he walked/ran on a tread mill, while connected to an EKG and pulso ox machine to what his heart rate/rythums and his oxygen levels while he walked and ran. We had the head of the pulmonary function lab do his test. She is suppecting that his vocal cords are tighting up and thus trying to close off while he is active. This is known as VCD or vocal cord dysfunction. So with this and asthma, it may be hard to tell which is going on.

We are heading back to STL tomorrow (SUNDAY 9/10) to visit with the doc again and see what the next step is. I am not sure how the actually diagnosis VCD, but I guess I am sure to find out. I do know one of the treatments, the first treatment would be to have a speech therapist teach Stephan ways to relax the cords when he feels like he is having an asthma attack. The thing with having VCD and asthma is you tend to over medicate yourself with your rescue drugs thinking you are having an asthmatic attack, when you are not. Those drugs for asthma are not going to help the vocal cords relax, so you are taking more and more meds.

Pray that we get an answer to this situation. Who said life was boring lolol

Also remember to keep our family finances in your prayers. I know God is going to come through. He has never let us down yet, though at times I will be honest I have felt like that, but then I come to my senses and know HE is EVER FAITHFUL

Wednesday, July 19, 2006 8:03 PM CDT

Good evening

Well we just got home from St Louis. Stephan had doctors appointment. And so I thought I would update you all on what we learned:

He PFTs we down a little, but still good, especially when looking at Christina's :-)

He was finally skin tested to see just what it was that he was allergic too, and to make it easier, he is allergic to everything but roaches and mold. Gross I know (no foods, that was not tested)

I did ask about raw apples because when he eats then his mouth itches real bad and makes him crazy. What I found out was interesting. Apples and Birch tree pollen have the same protein in it, and when the apple is cooked the protein is cooked out of it. So that explains the reasoning for the itchy mouth.

We also looked at his allergie meds and it was discussed that he is at the max level for all he is taking, and shots would be the best thing for him. However; it appears that his asthma is not totally under control and thus the shots would not be a good idea right now, because he could have a systemic reaction to it, and that will not be a good thing, so we will wait.

He was also tested again for Cystic Fibrous (CF) with a sweat test, mainly because of the poylups that were removed during his sinus surgery. Thankfully it was negative.

The plan now is to work on the asthma, make some changes in the home, as $$$ enables, like remove the carpet in his room, his dog can not sleep with him, get covers for his pillows, matress, etc. So little by little we will ahve to do these things. Pray for the $$$ to get it all done. We are to return to STL on Sept 1 for another appt.

Well that is about it for now, hope you all are staying cool, this weather is too much, thank God for central air.

Oh on anyother quick note. As many know I was going to be get getting married, however, it is not looking like that right now. I am not feeling like it is the right thing to do, it seems that we are walking in different directions when it come to religion, (spiritual things) and there are some other things too, but that is the main thing, and I want to make sure that we are on the same path in all areas or it just will not work and I would rather remain single then to wish I was. What is amazing is my heart is not broken. I want only what God wants for me and my boys, and I think I can handle being single a little bit longer. God knows what I need and through the years He has not failed me so, I will keep looking to Him for direction.

Thanks for stopping by. Also I do have a slide video of Christina if you would like to see it let me know.

TTYL

Lori

Saturday, July 8, 2006 5:59 PM CDT

Good evening everyone. I trust everyone is enjoying their summer. We have been busy here.

Stephan had a great time at "heart camp" Thanks St Louis Children's Hospital cardiac department. He is already looking forward to next year. When we got home both of the boys had dentist appointments and so far teeth look good! Stephan also had a cardiac appointment and had an echo and his pulmonary pressures checked and all of that looks good. On the 13th he is to return to Dr. Walker for follow up on his sinus surgery, he is still having a lot of throat clearing and acting like he needs to get
something up, but just can't, so we will see about that.

Josiah is going to youth camp on Monday for the week and then when he gets back Stephan and I are off to St Louis once again for doctor appointments, hopefully for allergy shots to get off of some of his 13 meds. PRAY that this is what happens even though he hates the idea of it I think he will like it better if he is not having to take pills everyday.

I have been working on a music video of Christina, and I have it done, now if I can only figure out how to get it to play on here that would be totally awesome. But for now if you wish to see it, send me an email and I will be happy to send it to you. She is a beautiful little girl. Through this video I hope those who watch it can see how special she really is. Many only know us through Caring Bridge, and I think it would be great if you all got to see who Christina really is. (I know I still talk in the present tense, and that is because though she no longer lives here on earth with us, she is still living, just a new and better address)

Well I think that is about all for now.

DON'T FORGET TO SIGN THE GUEST BOOK WE STILL LOVE READING IT AND GET IT ALMOST DAILY. AND IF YOU WANT A COPY OF THE MUSIC VIDEO LET ME KNOW. (REMEMBER IT IS NOT A PROFESSIONAL ONE, JUST A MOM ONE)

HOPE THE HEAR FROM YOU ALL SOON

LORI

Saturday, June 17, 2006 2:45 PM CDT

Good afternoon all just thought I would stop by and do a little update.

There really is not a lot going on right now. Stephan is recovering from his surgery well, though he is not liking some of the treatment things he is having to do, but knows in the long run it is good for him...I think...lol Stephan is getting ready for heart camp and is so excited to be going again this year. He is counting the days down now when we leave. It is neat to just listen to him talk about who he hopes to have as cabin buddies, and wonders how the other kids from last year are doing. He would probably start packing today if I would let him, and would be okay with wearing the same stuff each day until then. lol

I am missing my baby girl a lot these last couple of days. I had a dream about her about three days ago. It was not a long one, actually it was right before I work up..she was getting her Atgam for the BO that had developed for some whatever reason was losing some of her hair. But, she was interested in the neighbor's snake which is a pathon (this part is reality), and it was real big and nasty long. They had another snake that Christina thought was pretty, it was red, orange, and another color in rings, and the pathon took it from the tail and started to swallow it. The last thing I remember in the dream was seeing the two snakes faces on inside the other's mouth and they both look like they were smiling (gross I know). But, Christina thought it was so cool and told me to look you were able to see the littler snake in the bigger snake's belly as it was going down. She was all smile :-D

I love it when I do dream about her, I don't do it often enough. But it seems that just when I need to I do. She is such a kick in the butt to do what it is I need to do. I can always see her with my minds eye up in Heaven walking, no running in a field of perfect green grass, laughing so hard with her daddy and her other friends that she has up there. It is so nice to know that she has so many friends to play with and to worship God with. It is like that song saws..."I CAN ONLY IMAGINE...WHAT IT WILL BE LIKE"



Well enough about that I guess I need to get going, the boys will be home soon and I need to get motivated around the house. I had to work the last two nights and I guess I needed to sleep this morning and early afternoon, more than I usually do...so I will catch you all later,

Oh hey if you want check out my other site as well http://lkidzrn2be.bebo.com

And don't forger to sign the guest book we all still read them and love it when you do

Have a great summer

Wednesday, June 7, 2006 1:33 AM CDT

GOOD EVENING ALL

Well Stephan had his surgery yesterday and we spent the night in the hospital. It turned out that there were several other areas that need attention, and of course received it. Dr. Walker was very please with procedure and said she was glad she saw the other areas (3 in total) and was able to care for them other wise Stephan would have ended up with some serious sinuse disease in the further. The blockage in the sphnoid sinus (the one in the middle of the head) was actaully a cyst and she was able to get ahold of it with no problems and remove it completely.

Stephan is having some pain with all of this and some pressure behind the right eye, (all to be expected). He is also having a hard time not beable to blow his nose, and still gets bloody noses from time to time, and then we use some nasel spray and shortly after that and clears his throat and it all comes out the mouth (gross I know). This is one thing he does not enjoy and complains about.

You know I am so thankful that he did not have to go through all what his sister had to. I was ready for some meds just for me even before it started. The idea of an IV totally freaks him out, and so he went to the OR fully awake, of course I had to hear about the laughing gas that "does not make you laugh just makes you feel weird and so you cant do what they ask you do to." And when he finally got to the room, he did have a little guaze taped to the underside of his nose to catch any drainage, well he was not happy about that and wanted it moved, and now. He thought he could not breath through his mouth and he needed to blow his nose. Thankfully he is use to it now, still does not like it but dealing with it.

I want to thank all who prayed and kept him in your thoughts yesterday. God did do a work in helping there and leading the doc to see the other areas that need attention.

Don't forget to stop by and sign the guest book we all(the boys and I) love to read them.

God Bless

Lori

Friday, May 26, 2006 2:28 PM CDT

Okay, well here is the update I promised

Though not a whole lot is going on right now. Stephan is getting ready for his surgery/procedure. We had to have cardiac clearance and pulmonary testing done before hand, so we have that all done and out of the way. I so hope this will help him feel better. He has his moments when he is just not quite himself, and just wants to lay around and do nothing, and then there are other times when he is actually bored.

Last night for whatever reason he was not feeling good. He was complaining of being dizzy and stomach hurting. He finally vomited and was able to sleep, although it was about 1 am. He slept through till 10:30 and I think he might have slept longer if it were not for his brother wanted him to play a game on the x-box. But even then it took a while for him to get moving. His appitite is not where I feel it should be and he has lost a couple pounds and being a boy who is 11 years old, he should weigh more than just 69 pounds. I am hoping that when good old puperty hits he will start to grow and put on wt. Time will tell

The summer is here, the boys are done with school, and yes I have heard several times already (being only one week out of schoo) "I'm bored, there is nothing to do" (help....) Josiah has started working some, doing trim work, he is finding that keeping resposibilities at home and work up can be challanging, but that is real life. I am enjoying him having his "own" money, he is learning how to manage it for what he is wanting. It is funny though, when the youth go out to eat after church or something and he spends $10, then realizes he has only $5 left for the week, and in the end has to "borrow" from mom, maybe he does not need to eat so much just cause he has the money to buy all he wants. lolol, the fun part will be having him pay me back for the $$ he has borrowed, and I plan on having him do just that.

The scarey thing is he is wanting to start saving for a car, so we are going to see how that works, he is going to put 1/2 of his pay back each week and then we will go to the bank and place it in an account. Being only 14 if he keeps this up the by time he is 16 he should have enough to get something cheap and dependable. I don't know if I will be ready for him to drive yet or not, but as he says, he can get his permit this year, even though it will be the last week of the year but it will still be 2006. lol

Well there is not much more going on right now, just wanted to do an update

hope to hear from you all

Love,

Lori

Wednesday, April 12, 2006 12:18 AM CDT

I promise to do an update soon!!, just wanted to add some new pictures of MISS CHRISTINA. YOU HAVE TO LOVE THE ONE ON THIS PAGE, she is so full of LIFE. This was taken at her 2nd LUNGAVERSARY party


Good afternoon, it is a beautiful day here in Neosho, it is to get into the 80's, right now it is 78.

WOW, can you believe that tomorrow my Christina will be 13 years old. A teenager. I have tried hard all day today to imagine just want she would look like as a teenager. I actually sit in church and look up at the young people and know that if God had allowed her some more time on earth, that she would be standing up there next to Calah, with her long blonde hair, and her clothes just so. I try hard to imagine just what her laugh would sound like now, and I can still hear her telling her brothers "WHATEVER". But I can also imagine Josiah watching out for her, and not allowing any of the boys to like her. He was her protector.

As time goes on the days are easier to handle, life keeps moving, but then there are day, like today, when I wish it would all just stop and not move. I would like to just stay in my own little world where it is just Christina and I. I can imagine her sitting here on the couch with me telling me what to write and what not to write, and slapping me (in fun) when I would type something stupid, like telling you of a "love note" I found she wrote to someone. But, then she would have slapped me too, when I showed it to him. (this by the way did happen, shortly after she went to Heaven:-D) It is those things that help me make it through the this day. Tomorrow is another day and who knows how it will turn out.

Oh I guess some of you are wondering about Stephan, well we went to the doctor yesterday and she wanted another CT an so we got it and now we wait agian to see if he indeed does need his sinuses cleaned out, or if it is time to start allergie shots, or if it is something else. But I will try to let you all know as I know.

Oh one thing I think is neat. Tomorrow on Christina's birthday, I get to do my clinical rotation in OB, so I will be able to witness, and assit in new lives coming into this world on a very special day for me. :D

Got to run, DONT FORGET TO SIGN THE GUESS BOOK,

OH IF YOU WANT TOMORROW TO LET BALLOONS GO TO CHRISTINA THAT WOULD BE SO COOL.

Wednesday, March 29, 2006 5:29 PM CST

Good evening all,

Here is a quick update before I have to get ready for church.

Stephan has been having some problems with headaches for the past month. We had an MRI done on Sunday to rule out a Glioblastoma, a serious and deadly brain tumor that his father had. The results came back yesterday and he has what is known as a Arachnoid Cyst. It is small and something that just needs to be watch if he becomes symptomatic (or he starts having symptoms) and then IF it grows a shunt is usually put in place and that is all. Nothing to worry about for now.

However; he does have chronic sinusitis and will need what I am calling a "Rhino-rotter", or his sinuses cleaned out. That will not be fun. He is to see Dr. Renee Walker when I get back from Baltimore and the national student nursing convention.

The director of the nursing program at the school I go too, has known me for a long time, and today she made a very true statement. She said that I could never claim that my life if boring. I told her I don't know if I would know how to act if it were. lol

Oh on the brighter side of things, miracles do happen!!!

I am getting Married. Yep it is official Myles asked me to marry him on my birthday :-) The boys are so excited, Stephan was telling everyone we met at Walmart that we knew today. lol He is so ready for a Dad. The time and date are not totally set yet. But I will keep you up to date on the happings. I know Christina would so love Myles too. I am excited to have someone to stand with me even when times get crazy with all the medical stuff in our family. He is my rock, next to Jesus of course.

Well got to run, just wanted to do a quick update

Love ya'll and I am watching the guess book, I see the numbers of visits, but no one signs the book :'(

TTYL

Lori

Sunday, March 19, 2006 2:31 PM CST

Can you believe that I am here doing another update in less than a month. lol Miracles do happen.

Well things here in the McReynolds family are moving right along. The boys are doing pretty good in school if we can just keep them motivated. haha. For me school is going fine too. So far I am at least passing my classes, which are as follows:
-Nursing Interventions III
-Med-surg component
-Maternal child component
-Psychology
-Clinical III
-Algebra
Can you guess of all which is my favorite --- NOT---Algebra. In a couple weeks I will be going to Baltimore, Maryland for the National Student Nursing Convention. I am so looking forward to going, and hopefully coming away from the convention with a lot of information and new test taking skills.

My FRIEND Myles is coming down to Neosho on Weds for Stephan's birthday, and it just happens to be mine on Sunday. I am looking forward to seeing him as are the boys. I will keep you informed as to what goes one here. He is so sweet. I know that Miss Christina would love him. He Loves her I believe even though he never met her, I have made her alive to him.

Keep praying for our friend Annette and her family on the lost of our sweet Brooke. Now Christina has one more friend in Heaven to play with.

Well I guess I need to get going, hope you all have a good afternoon.

DON'T FORGET TO SIGN THE GUESS BOOK----STILL LOVE TO READ IT

Lori

Saturday, March 11, 2006 4:52 PM CST

Hello everyone.

Sorry for waiting a while since last update. I have thought about doing it, but there always seemed like there is one thing or another to interfer with my doing it. But now I am, so that is what matters.

Things here have been going okay, school keeps me busy and same with the boys. Josiah has just signed up for soccor again, and Stephan has start his baseball practices.

Speaking of Stephan, we just got back for St Louis and his check ups. As for his heart condition he is good for another 2 years. As far as his asthma....well we are still trying to get it totally under control. We do have a new game plan and that includes a slight change in his meds, (which he feels like his sister when it come to taking the, though he knows his 9 meds are in where comparable to Christina 20 meds.) He knows now that prevention is the best, and was told that he is to pre-treat himself before doing any type of activities, ie, pe, baseball, etc. And he is scheduled to return to STL in June and then again in Aug. He is excited to be going to Camp Rhythm, the heart camp that St Louis Children's Hospital has for children who have had or have heart conditions.

Our little friend Brooke Snider, from Seatle Wa area past away last Sunday evening, (March 5th). I can see her, Christina and Laura, Ashley and so many others all running and playing and the amazing thing is they are all doing it with joy and breathing deaply and fully, with no oxygen or anything. Not even a scar :-) Please keep the family in your prayers. The services will be on Monday, March 13th.

It is amazing how many have left us in the last couple years. But, through it all each one of us mothers, and fathers, would have to agree we would do it again, and again, just to give our precious children a chance for even a small chance of a normal life. And each have had that, though some short lived. God has his special children wrapped in His arms. Like Brooke said, "FOR GOD SO LOVED THE WORLD THAT HE GAVE HIS ONLY BEGOTTEN SON, THAT WHOSOEVER BELIEVES IN HIM SHOULD NOT PERISH BUT HAVE EVERY LASTING LIFE." God is faithful.

Well I have to go and get dinner finished. Thanks to all of you who still come by and check on us. Please do sign the guess book to let me know that you have come by, I still enjoy reading each entry, they make me feel close to Christina, cause I remember how much she enjoyed reading them too.

God Bless

Lori

Tuesday, January 24, 2006 6:50 AM CST

Well here is a quick update on the goings on here in Neosho. School for the most part is going okay, took my first test yesterday in Algebra (YUCK) and have one today in Psychology, and then another one in Med Surg next week.....oh joy. I do get to do a teaching project on Congenital Heart Defects, those that cause cynosis (blueing) and those that don't. Right up my alley, though there is a lot to learn from it all too. And of all days I get to do it is February 14. :-)

The boys are doing well too, this last quarter at school was the best thay they have done in a very long time. I am pleased to say that they both are improving. Stephan made honor roll and Josiah missed it by 0.73 (or around there)

Our little friend Brooke is doing better, the new Chemo is working and the turmors are strinking at last report, she is; however, now losing her hair, and though she has a wig made just for her, she is going to be making some bandanas with her sister to wear, I am anxious to see how cute she is going to look. It is amazing to think of the power of prayer. To think that just a few weeks ago the doctors were telling her mom, Annette, how they were scared and giving Brooke only a 50/50 chance. Though no one really knows how the cancer (or any cancer for that matter)will totally effect her, we know that we serve a God who has the answers we need. Please remember to keep praying for a totally work to be completed. Please stop by and visit her page at www.caringbridge.org/wa/brooke

Well once again I am off to school, just to think that this time next year I will be graduated and a real Registered Nurse. WOW. Pray that I can keep going, I have gone to working only 1 day a week and though it might be hard financially it will be worth it in the end, I get to do schooling and spend some quality time with my boys.

Talk with you all soon, God Bless

Lori

Monday, January 16, 2006 7:18 PM CST

Good evening

I hope this finds you all doing well. A lot has happened since I last updated.

For one, the actual night I did the update I chatted on line with Brooke Snider's mom and she asked that I come out to Washington. Brooke was having a real hard time as I mentioned in that update. Anyhow things worked out with a ticket and everything. So about 1:30 am while I was still at work I scheduled a flight and all. The boys were going to be cared for by a friend of mine, who just happened to call around that same time, and of course their grandpa. Everything just seemed to fall into place.
We did not tell Brooke that I was coming. And boy was it a long flight.

I arrived at the Seattle/Tacoma airport, I don't even know what time. Let me stop here and say that I had just finished working a second 12 hour shift, went home and packed and got things ready for the boys, and then headed to Tulsa with a friend and the boys to fly out. So by time I arrived in WA I had no idea what time it was, and remember they are two hours behind me, so I was really messed up (lol not that that is anything new)

My friend Myles met me at the airport which was very nice and then we went to eat and then to the hospital. Brooke was very happy to see me as I was her. She was and still is having a lot of pain, from the meds that help maintain her white cell count. Any way please go to her web at www.caringbridge.org/wa/brooke her mom is keeping it up dated. And keep her in your prayers, she still is needing them the new chemo is starting to work and she is now losing her hair rapidly, as you can imagine it would be hard on any 13 yr old girl. She does have a beautiful wig that will be professionally fitted for her for free.

I will ask that you keep her mom and sister and brother in your prayers as well this is all very hard on them.

Well, it is official, I finally have a real "boyfriend", Myles and I have spent sometime together and totally clicked, He will be coming out here in a few weeks to visit me. I am very happy, and he makes me smile whenever we talk and are together (ok, let me rephrase this somewhat, I smile alot more these days whether we are talking or are together, just a thought brings a smile). The boys are excited to meet him too. I promise to keep you all up to date as to my romance. That is if you want me too, let me know. lol

Got to run hope you all have a great week.

Lori

Friday, December 30, 2005 10:20 PM CST

Hello, now I bet you are all surpised that I am doing an update so soon.

Well I just thought I would wish you all a very Happy New Year. I am wishing each of you will have a wonderful year full of joys with no sorrows.

It is amazing to think how much time has gone by in the last little while. It seems like alife time ago that we started this site for Christina. She was so excited to have a web page all her own and I remember when we would read the guest book entries and how sometimes she would laugh and then at other times she would be amazed as to how many people have signed her book, and where they were all from. I still am amazed at times who signs the book.

I was thinking of all the friends we have made through this site. Some we have met and others we still talk with. I would hope someday to meet all those who take time daily to monthly (now) to check on our family and see how things are going. Or of all the friends we have made since we started our journey to St Louis.

One of those friends is Brooke Snider from Washington State. She was dxed with Bronchiolist obliterants the same time Christina was and though she was doing okay for a while, she is now in the hospital in WA fighting Cancer. She is a very brave little girl. I want you all to please pray for her as you did for Christina. Her mom says today that the Chemo they were using is not working and instead of shrinking the tumors they are growing and so now they are trying something new. They are giving her 50/50 chance. Her web site is www.caringbridge.com/wa/brooke so please stop by her site and let them know the you too will be praying for her.

Got to run, I am at work right now so until later.

Lori

Thursday, December 22, 2005 8:07 PM CST

MERRY CHRISTMAS

Well let me try this again, I love computers, lol

Wow it is hard to believe that this year is almost over. I was thinking the other day of Christina's last Christmas with us, she wore her St Louis Children's Hospital long sleeve tee shirt with children's spelled out with animals, a jean skirt and snow men socks she got from Nancy (a friend of ours) and her big white hair bow. She received a tea set from a friend we met on line who lives in NY. She was having a blast that day. We spent the afternoon at a friends house and her and her brothers just played and played, she tried to sing or rap "Away In A Manger". You had to be there it was very funny. Who would have known how sick she was to become in such a short amount of time.

I miss her so much right now, not just cause it is Christmas but I feel a void within. I am not sorrowful, however, for there is no way I would wish her to leave Heaven, Jesus and her Daddy for me. I can only imagine what it is like there at this time of year. Can you imagine attending a birthday party for Jesus (I don't know if this would be politically correct or not, and don't care) but I can picture a table spread with the finest of foods, the gifts would be the songs of praise to Jesus for His ultimate gift of love. I can see Christina running up to Jesus and hugging Him, telling Him how her momma and brothers celebrate His birthday, and of course reminding Him the her big brother shares His birthday with Him. And never once needing to stop to take a breath as she talked a mile a minute like she loved to do here. And with a smile as big and bright as the sun.

Although she is not here physically I feel her presents here with me in my heart, where she will forever be until the moment when I can hold her in my arms again. It is funny there has been several times when I went to write Christmas, I started to write Christina, I know it is more than likely cause the last three letters are all that are different, but I know it is because she is so close to me right now.

Her brothers are doing fine, Josiah is so ready to turn 14 years old on Sunday, I am not ready. Stephan is doing okay, little attitudes from time to time, but for a 10 year old I guess that is to be expected, (PRAY FOR ME). Tonight he was having some chest pains, but they are getting better. He still has some problems with his asthma and such, but for the most part is doing okay. We are heading to St Louis the 3rd of January for a check up with pulmonary, pray things go well.

Now for me, well I finished the first year of the nursing program at Crowder College and am now a senior with only two semesters to go. I finished with grades better than I thought I would. I am very pleased with the way the year has turned out. So I am that much closer to working as an RN with pediatric transplant kids. :-D Also, on the fun side, I believe it or not after 10 years have a "boyfriend" if that is what you call it at my age. We will see where it goes from here. He supports me with my schooling and more very much. I think Christina would really like him. Stephan shocked me the other day when he asked me "if you and Myles get married can I call him Dad?" My reply was if you feel like you want to then that is okay with me but I would not make him. We will see where this goes. I will keep you informed if things progress.......

Well I guess I need to get going, I trust you all will have a VERY MERRY CHRISTMAS and HAPPY NEW YEAR

Lori

Sunday, November 20, 2005 2:16 PM CST

Hi everyone, sorry for now doing an update in a long time, things are a little crazy here in Neosho.

Well this semester is almost over for me, thank God, and believe it or not I am actually passing all of my glasses and a couple of them with A's, not to bad for someone who is old like and and lossing brain cells everyday :-)So I only have 2 more semesters and a state board to take and then I will be a new RN, watch out.

Really things are going okay here, a little busy, but no ER trips lately or even Doctor appointments, (Dr. Wheeler must be starting to miss us lol)

The boys are both doing goo and staying busy with school, although I am sure that they are wishing for some sport to play right now, but they are not into anything this fall/winter. So they will have to put up with me. They are looking forward to going to the St Louis Children's Hospital Lung Transplant Christmas Party in a couple weeks, so that helps.:-)

It has been a while since I have updated that I am not even really sure what I said before. I know I mentioned about our friend Laura who went meet Christina in September. Well since then, Christina side kick all while we were here in St Louis during transplant, Ashley St. Romain, as gone home too. The two girls are together again and I am so sure that they are having a blast up there. Also another friend of ours past away last month, Kaycey. It is hard to think of all these children leaving this life so early, but then you have to smile and think of all the things God has waiting for them. Please keep praying for these three families especially around these holidays, it is hard.

Thanksgiving day will mark Christina's second anniversary in Heaven with Jesus and her Daddy, this month has been hard for me, I find myself getting down and depressed over it, (it would have also been Richard's and mine 15th wedding anniversy)then I have to remind myself that she is not sad and would not want me to be sad, and that I need to be thankful for my two boys who are still with me. But, for some reason this year seems harder than last year. I look at some of her pictures where she is so full of life and then look at some of the pictures that were taken the last half year of her life and see such a change, but yet she was always ready to smile or to make a silly face at me or a poutty face. lol No matter how many years go by Christina will always be my hero!

We are going to go and spend Thanksgiving with a friend this year, I am really not wanting to spend it alone with just me and the boys. IT seems too emptied. But, tomorrow Christina's best freind, Calah, and I are going to do some baking, we started doing this last year in memory of Christina's pumpkin pie she made that was beautiful and smelled wonderful, but when we took a bit there was not favore in it. (I will try to post some pictures of Christina and mine baking day for her last thanksgiving in 02)

Well I guess I need to get going for now, sorry that it takes longer to update. Keep praying for us. And HUG YOUR CHILDREN AND LOVE THEM EVERYDAY

Lori

HAPPY HOLIDAYS

Friday, September 30, 2005 1:37 PM CDT

Hello,

I bet all of you have given up on ever seeing an update again. So Sorry, life here has been a bit crazy, but when has that been different.

Well school is in full force right now and very busy for me. Though I will not complain, I really do enjoy going and looking forward to the day I finish.

Stephan has kept me busy too these past couple months with his asthma/allergies and getting is tonsils/adnoids out and then having some problems and spending last weekend in the hospital. He was so funny, as we were walking the tunnel that goes from Dr. Wheelers office to the hospital he was asking what we were doing and when I told him he was being admitted to the hospital for at least the night, he was so, "no I'm not" it took till we were in the elevators going to the 7th floor on the west side of the hospital that he realized I was telling the truth. And bless his heart the first thing he said then was, "Well, I don't want to be in Christina's room" I promised him that would not happen. So as soon as we walked through the doors to the unit, I mentioned it and the nurse's assured me that they had it under control and already thought about it, so instead of being in room 12 we were next door in room 11, this was okay, not the best but okay. Needless to say that Stephan is doing fine now, thank God, we are still watching his asthma close and his allergies too. Some day he will be needing the shots of which I am sure of.

Josiah is doing great, growing like a weed, he is not right under 5'8" and loving it because now he is taller than me and knows he is still growning. HELP!!!!!!!!!! Soccer has started so with school and that he is keeping busy. I don't remember if I mentioned that he wanted some attention too so this summer he had to have his appendix out. He came through that with flying colors, spend only one day in the hospital and recovered quickly. Now he is just watching the changes that his scars are making and question every stage of them :-P

I do ask that you pray for a dear friend of mine, we met this summer at Children's. Her name is Maragret, her daughter Laura (14yrs) was waiting for a lung transplant and while waiting she coded and was down for a while but they were able to bring her back, well on Weds the 21st I received a call saying that they were going to let her go to be with Jesus, and on Thursday afternoon, after only about 10 minutes after coming off all machines, she did jus that, Laura received her total healing and is not happy and playing with Christina and all the other children we know who have gone to be with Jesus. But PLEASE PRAY for her family. The pain is unreal that they feel right now. Thanks

I was thinking about Christina and Laura on the way home this morning and thought of the day Christina was born and this came to my mind, When I heard that first cry, how much joy flooded my very being, And when I let the first cry out when she left me for Heaven, how much joy she must have felt to see the face of Jesus. Don't know if it means anything to anyone else, but it spoke words to me, if I know only half the joy she felt when she saw Jesus, when I first saw her, I can't help but SMILE. Pure JOY AND HAPPINESS is her's forever and ever. Iimagine the shock infants feel when first coming into the world, (I would cry too), and the joy we felt, then imagine the shock we feel when they leave this world, the tears that flow, but I can't stop there, for her to know the joy unspeakable, isn't that what we all want. Christina just received that all before we did. (like I said don't know if this makes sense, but you all know how I can go on at time)

Well, I guess that is about it, I need to get going, promised the girls at work that I would bring potatoe soup tonight, so we are going to EAT!!!

Hope to hear from you all

Love,

Lori

Wednesday, July 20, 2005 9:17 AM CDT ******NEW PICTURES A MUST TO CHECK OUT******

Good morning/evening. I just got home from work and am a bit stressed. So as in times past I thought I would come here and down load.

I just found out at work that what I thought esl/fmla was was not. Sorry, esl = extened sick leave and fmla is family medical leave of absence. I was under the understanding that I would be getting paid for the time I was to have off with Stephan if I as scheduled to work, This is time you build up, but what it actually is, is a guarentee that you will not lose your job for taking the time off. You only get paid when it is for your own personal health. Needless to say I am not happy. I am almost ready to scream. I believe that if it is time that you work toward then you should beable to use it when another family member needs you. And so I am out of a week and half of pay plus the week we will be going back to St Louis in Aug. I am blonde maybe that is why I don't understand this stuff. lol (if this keeps up it might be my health)

I even humbled myself and went as far this morning to call the department of family services to see if there were any programs that might help if I were to quit my job, mind you I really like what I do. But, I feel my kids need me more. Anyway because the boys and myself receive survival benefits from my husband's death, which does not amount to a whole lot, we really are not qualified to much if anything, then there is a chance that I might not be qualified for anything because I quit my job. I questioned the fact that I am a full time students, and was told that it too can be held against me in some circumstances I told the girl that so because I am honest, hard working and a good mom, needing time with my boys who have done with out me for so long, and trying to better myself, I get nothing. But if I lied and shacked up with someone I could get all kinds of things. She of course told me that was not the way things were, and I told I know different. And she said those people get caught and I said but it makes it hard of those who need help and are honest and then can't get any. I love my government policies NOT

Well that off my chest, thanks for letting me blow off steam.

Stephan seems to have improved some, the steriods seem to help. I saw Dr.Wheeler on the way out of the hospital this morning and we were talking about his pfts and he told me how much improved they are, I agreed. Thanks to the prednisone for clearing is lungs, I did question what would happen once he was off of them. And learned that usually just staying on an inhaled steriod helps, we will just have to watch and see. For now I am happy to say that his peak flow numbers are starting from time to time hit the green zone where we want them to be.

One more things, PLEASE PRAY FOR A FRIEND OF OURS WHO WAS TRANSPLANTED 2 YEARS AGO AND CONTACTED RSV AND IT DAMAGED HER NEW LUNGS A COUPLE MONTHS AFTER TRANSPLANT. SHE WAS RELISTED BUT JUST LEARNED AFTER SEVERAL SEVER ILLNESSES THAT HER HEART (WHICH WAS TRANSPLANTED TOO) IS DAMAGED AND SHE IS NO LONGER A CANDIDATE FOR A SECOND TRANSPLANT. HER NAME IS KAYCEY SHE IS 14 (I believe) PRAY FOR THE FAMILY AS WELL, THIS BRINGS A LOT OF MEMORIES BACK TO ME, WHEN IT WAS TOLD TO ME ABOUT CHRISTINA'S FUTURE.

talk to you soon, hopefully next time will be all GOOD NEWS.

Lori


PS DON'T FORGET TO CHECK OUT STEPHAN'S WEB SITE, AT WWW.CARINGBRIDGE.ORG/VISIT/STEPHAN Don't think the link below is working right

Thursday, July 14, 2005 10:34 AM CDT

Hello, sorry it has been a while in doing the update

We are home from St Louis, (wow I never thought I would write that again in these pages)

Things are looking "ok" Stephan went through a serious of test including: echocardiogram, ekgs, x-rays, PFTs, sweat test, and an excerise challenage that would help to induce asthma.

The results are in, and as of right now it looks like he has severe ashtma, right now he is on 60 mgs of steriods, and if no improvement by the 17th and then I am to call St Louis and talk with them about what to do next, and then as of right now he is scheduled to go back on the 3rd of August. So we will see.

Until then he is home and already had ball practice an hour after we got here. His first games for the travel ball team will be on Saturday in Mount Vernon about 50 miles from here, and on that day he will play 3 games. I will get there for the afternoon games only because I need to sleep a little bit I am working on Friday night, and they are all meeting at McDonalds at 6:30 Sat morn. His reg team won first place and he received his trophy (which is cool looking) and a plague for best second baseman.

Oh yea, he asked if he too could have a web page like Christina (who he missed a lot this week, he went through a lot of testing that she did) anyway, his web site is www.caringbridge.org/visit/stephan please stop by and sign the book, he asks everyday so far about it

I will do more indepth updates on here then there so be sure to check both sites out.

until later

Lori

Monday, July 4, 2005 9:21 AM CDT

Happy 4th everyone, I trust you all have a big bang of a day, haha. Okay I know kind of lame.

Well as you might have guest we are home from St Louis. Stephan and a great time at camp and is looking forward to going back next year. I am so glad. He made new friends and even has exchanged phone numbers. So now I guess I will be hearing "Can I call...." But that is cool. He learned that a lot of kids have heart problems, in fact he was the only one in his cabin that did not have a big scare down his chest, and was able to tell about how they fixed his defect through a heart cath.

Josiah is recovering great. Though he really did not do much while we were gone. Just sat around and played the X box. Oh what fun, but I guess for a 13 year old, that might be all they need, infact that is where both of the boys are right now. They rented a game (Legos) and have to play it out.

Now on to more serious things. We are going to be returning to St Louis on Weds. Stephan is going to be seeing pulmonology. I took the PFTs that he did here and had them looked at there, and several of the docs agreed that he should be seen. We will be seeing one of the new docs, that I never met, Dr. Ferro, he is taking Christina's doctor's (Dr. DelaMorena) place. She went to Dallas :(

Doctor Sweet looked at the paper and told me that they would be glad to see him and lets hope it was not Pulmonary Hypertension. That was the last thing I needed to hear, especially the way my mind works. So when we are there I am going to talk with Ferro and ask for a heart cath. This is one way for sure to check for pulmonary hypertension. I actually thought I would just call cardiology and get one, but I will wait and see what I think about the testing that they are going to do first. Time will tell, and I am trying not to be too gun happy or shy which ever the saying is. I think I have done good so far, considering the PFTs here were done in May.

I will let you know what I find out as I find out. I am having a little da sha voe (sp???)

As for today we are planning on going to Dr. Wheeler's home for a pool party, the boys are looking forward to that. So we will be there for a while and then come home and clean house and do some laundry and then get started re-packing our bags. I think Josiah is going to go with us, and then some how will be going to camp on Monday. If all goes well in SL then camp is not an issue, if not he may miss it all or part of it. But I think he is willing to do that. Jenn said that if Stephan does end up with a cath Josiah can stay with her and she will just bring him back to the hospital in the mornings. I know he will get totally bored, but we will see.

Until next week sometime.

Pray for a new friend of ours, Laura, she is waiting for a double lung transplant and is next on the list. he web site is www.caringbridge.com/fl/sugarbear

Talk with you all soon

Lori

Wednesday, June 29, 2005 7:23 AM CDT

Hello from St Louis: WOW it has been a long while since I have said that. Well as you all know Stephan is at heart camp, and I am sure he is having a time of his life. He was so ready to get there and once there I saw him for just a few minutes and he disappeared. Once I located him, he was busy playing basketball, and when I went to kiss him good bye, well he was embarrassed for me to kiss him in front of others, a hug okay, but no way for a kiss, lol

Well, I have more news to share with all of you. Remember back in May Stephan had PFTs done, and I was not too happy with them and we were treating him for possible asthma. Anyway I had some of the docs here in St Louis and one of the transplant nurses look at the results and they all agree that he needed a full work up. Dr. Sweet said he thought he needed to be seen, and he hoped that it was not pulmonary hypertension. That was the last thing I needed to hear. (for those new to this site, Christina had pulmonary hypertension and that was the cause for her lung transplant).

So here I sit in St Louis, Stephan at camp until Friday with no idea that we are going home on Sat. and spending the fourth at Dr Wheeler's and then on Weds coming back up here for a series of test.

I did question him a while back as to if he ever need a transplant of any kind would he want it, his reply was, "yea, if Christina could do it so could I" Now I am not borrowing too much from tomorrow, at least not right now, until I know what we are looking at. I will no deny the fact that my mind will not go crazy if I let it with all the what ifs and doubts of the past. But, I am trying hard to keep it all together. I am asking that you all PRAY that things are cool, and if it is just asthma we can find the right plan for him to help.

Well, I promised a little friend of ours who is here from Seatle WA that I would go swimming with her this morning. She was (is) one of Christina's transplant buddies.

Until later

Lori
I will update later this week or next week when I know more. Thanks so much for coming by.

Saturday, June 25, 2005 5:34 PM CDT

Hello to all who come by

Well I have had an exciting end of the week. My oldest, Josiah is noW in St John's Hospital. We came into the ER around 10ish and waited forever to get to the back,(4 traumas came in while we were there.) Once back there test were ran and we waited and waited for result. I knew it was going to turn out to be his appendix and sure enough by 7:30 this morning Josiah was in the OR having them removed. I called up to the peds unit last night/early morning and informed them that he might be coming up and that I would perfer him not to be places on the back hall way, reasoning, Christina spend time in each of the back rooms and she left us in room 12. So they placed him on the front, and when I got up here I noticed it was in room 706, this is the room she was first admitted to St Johns in 2001 before transplant when she was having one of her small pulmonary hemoragghe. (sp) But it is okay.

Josiah is doing okay now and more than likely will be getting out tomorrow if all goes well. So far he has not been able to eat a clear liquid diet and keep it down, but once he does that will be the key for him to go home.

Poor Stephan is beside himself. Right now he is driving me a bit crazy. He was, what I have come to conclude, afraid that something was going to happen to Josiah, he was wondering why he would not be able to stay up here all night, etc. When with Christina she had the two rooms and all kinds of people all hours of the night and day. I tried to explain that this was different, but in the long end of it all I honestly think all his fussing was due to fear he had.

Also, it cut into the plans of leaving for St Louis today, and he was afraid that he would not beable to go to camp. Though I have assured him he will be going, and if needed our friend Jennifer from the hospital will come and meet us half way to pick him up and take him. I told him that if that is what happens then we will stay a day longer in SL and go to the Zoo on Sat. He was excited about that, believe it or not he has never been there. But I think IF Josiah is doing as well as he is I just might be able to take him there myself, though we will not leave until early Monday morning, I will be worring about Josiah, but I know he will be in good hands if I leave him home. He is not wanting to go, he really does not care for it and he has plans for spending all next month at camps and a friends in Texas. So he has to get all of that worked out so we know just where he will be and when.

Well, so much for a calm relaxed life. Some point things will get quiet for me, that or I just jinks myself by saying that,lol

HOPE TO HEAR FROM YOU ALL VIA THE GUEST BOOK!!!!!!

Thursday, June 23, 2005 9:59 PM CDT

Good evening everyone

Well next week is camp week for Stephan. I actually believe he is excited about going, seeings how he was ready and pack this Monday. We are leaving on Saturday and he will be at camp on Monday. Some of the things is is looking forward to do is like on Weds night they are going to disect a cow's heart, each night has a neat theme they are following. I am looking forward to hearing what he thought of it all when we get home next week.

He played his last game of the season, although there are actually 2 more games in the season. So far his team is in first place, so when he gets home they are going to have a cook out and hand out trophies and plagues.

It it seems that recently he is keeping me guessing. He has kept me busy. Last week he was seen at Dr. Wheelers and for a follow up appointment with his "asthma" and strep throat. Dr. Wheeler was listening to him and heard a murmer, so the next day we had to do an echocardiogram. Dr. Gellatt from Children's Mercy in Kansas City read the echo and said that the device is still in place and he thought it looked okay. So, we will be watching him. Also his peak flow numbers are borderline from being in the yellow to being in the green zones. The green is where we need him to be. The yellow is the area in which we are to watch him and give him some Albuteral and Flovent. I am waiting to hear from Wheeler to see how I sould be doing his meds when he is in these number ranges.

Out side of all of this things here are going good. Josiah is doing great, he is getting ready to go to youth camp when we get back from St Louis and Heart Camp. Then he is planning on going to Texas to visit with a friend (whose dad was friends with Josiah's dad), after that he is planning on going to another youth camp there in Texas. That part is not totally confirmed yet, we are trying to get my work schedule and end of camp together so that I can go down there to get him, until then if it does not work out then I am going to get him the weekend before camp.

It is amazing as to how fast they grow, Josiah is happy to say that he is taller than me, and of course his shoes are larger than mine too, lol

Well that is the update, sorry it is a little short and quick. Just wanted to keep you all up to date as to what is going on

Thursday, June 9, 2005 5:27 PM CDT

Good afternoon, hope all is well with everyone who stops by. Things here at the McReynolds house is going along okay I guess.

I went Monday and turned in my resume at Dr. Wheeler's office, hope to hear something tomorrow or Monday at the latest. I will work full time there and part time at the hospital, I am thinking about seeing if I can't transfer to peds part-time. We will see.

Josiah is doing well, right now he is at a friends house and tonight will be spending the night with grandpa. Stephan once again is sick, for the 4th+ time he has strep. I would not be surprised if by now he has not become a carrier of it, but then if a carrier, not sure if it would flare up lilke it does, who knows not me. Though I do know he just work up and guess what --- he is bored --- imagine that. lol Oh now he wants to argue about how fast he went to sleep, he claims it was about 30 minutes after I suggested he take a nap, he says he was so bored that there was nothing else to do so he went to sleep.

He goes back on Tuesday the 14th for a recheck of the ashtma issues. His peak flows are lower than they should be, and the nurse prac said today that more than likely Dr. Wheeler will have him redo the spirometery test. So we will see what else there is to do after than.

Well that is the life here in good ole' Neosho, nothing exciting, lol

We are still planning on going to "heart camp" in a few weeks, Lord willing.

So until later

Lori

Thanks for stopping by, I am going to change the pictures too, so make sure you have a look and don't forget to sign the guest book we all still like reading them

Wednesday, May 25, 2005 8:17 AM CDT

**********NEW PICTURES ARE POSTED, TAKE A LOOK************



This picture was taken the day before Christina's lung transplant



Good Morning

Well the rain has stop and I finally can get out and clean the pond. (ANY VOLUNTERS) I knew MO had nasty rain, however, I never really knew how nasty until I had the pond, I just makes the water almost brown -gross-

Tomorrow is the final day for the boys in school. Today they are going to Jolly Mills for field day, Stephan thinks he is going to catch a fish, last year he brought a turtle home in his lunch box, we will see what he manages to get past the teachers this year. lol

Last night was a bit rough for me, it was the Awards night at school. While I was helping get things ready for it and the fellowship after, I just kept thinking that my baby girl was not going to be there to get her trophies. But I know she has the best awards ever, she has received her precious crown from the King! Still it does not always make it easier in this mortal mind.

There really isn't a whole lot happening here right now, thank God. Stephan is doing okay, as long as he takes his meds he seems to fair pretty good for the most part. He is a little bummed at the fact that the last two games of baseball will be while he is at camp in St Louis, he told me that he would not be there to get his first place trophy. That boy has faith, I asked him if he was sure that his team would win first place, and he said, "McKays team always wins first" well I guess there really was not anything else to say to that. Though he is not happy at the fact that they lost their first game. He blamed it on some new kids that never played before. Oh the joys......

Josiah is so ready for school to out for the summer, he has big plans, although not sure as to what plans that will come to pass. First he is wanting to go visit a friend in TX, and I guess he is wanting me to take him there lol. Then he is wanting to go to camp in TX again. That is okay, only our youth group is not going there, so once again he is needing to get with another church here in town whose youth will be going, but try to get a 13 year old to take responsibility and make phone calls for himself, well I am finding that to be funny. Oh do I miss those younger years when life was easier.

Well,I guess as for me things are the same, I have emailed the director of the pediatric unit at St John's to see about a position that has opened on days, I am not too sure if I will survive working days, but I do think I can adjust somewhat. (maybe) The only thing I will not like is the shift difference $$, you don't get one on days like you do working nights, but that is okay, if I am to have this position then it will work out and I will be cool with it all. It is in God's hands not mine.

Well I guess that is about it for now. I am going to try and change the pictures so be sure and chec them out

Lori

Wednesday, May 18, 2005 5:53 PM CDT

Evening, okay I know I am fired. Sorry for not updating sooner.

Stephan had his PFTs and I was not impressed by the numbers. The FEV1 and FVC were within the low end of normal, however, the FEF 25-75ere only 58nd that is not good, it is showing some air trapping. At this time we are treating him as if he had asthma, however, as of yesterday we have changed his medication two or three times. Bless his heart at one point he said he was feeling like Christina with the medications, only most of his are inhalers. He is still playing ball and nothing has slowed him down any, well until he can't breath and then he comes holding his chest and does a breathing treatment and that seems to help. We are going to watch his progress and do peak flows (like a mini pft) and see how he does. We have green/yellow/red areas to watch for, we want to keep his breathing in the green area, if it gets to the yellow then we have a plan to follow and if it gets to red then we do a breathing treatment every 20 minutes and call the doc.

I am trying to not hold my breath on everything that is going on with him, but one can't blame me for being a little nervous. I do think however that Josiah is feeling a bit left out. He was telling me that he was warm this morning and was needing to stay home. I told him to be thankful that he is HEALTHY and has not problems, that GOD. I actually thought about taking him to Wheeler just to make him feel good, but that would be a waste of time and money (lol).

Christina's Garden Spot is really starting to look like a little park, I dug a pond in it last week, the boys and grandpa bought me a pond kit for mother's day) and I have several little plants planted around it, hoping to get some more, [donations will be accepted :-)] Christina and I always talked about having a pond with a fountain and now we finally have it, a lot of work but work that was well worth it. I can see her in my mind's eye looking down and wanting to tell me where to plant what. (her brothers have given their bit of advice too) I will try and post a picture of the pond for you all to see.

Well it is almost time for church and I still have to get my hair dried and ready. Hope you are all having a great summer thus far.

Hoping to hear from you all

Love,

Lori

Sunday, April 24, 2005 10:35 PM CDT

Hi everyone, hope things are going great and spring has sprung where you are, it is trying to here.

Well, I have been busy since I last updated. I went to Columbia for the conference and learned some new and interesting things. Finished one of my main projects for my nursing theory class-tonight. Only two more clinicals and one care-plan on a patient I am caring for to do and finish by the 2nd. Then my final for Theory and SCHOOL IS OUT FOR THE SUMMER :-) not that I am happy or anything.

I was hoping to get a position as an extern nurse at Children's in St Louis, however, it does not look like that is going to happen, 1-I have to work there, or 2-go to a school who does their clinicals there, well that is 2 of 2 that I don't do, so I guess I will not get to do it there. then I thought about doing it here at St John's but, Stephan has 'Heart Camp' during the time I will be doing it so that takes care of that. I would be better being close to where he is. Though I will not be at camp, I will be close by in St Louis.

Speaking of Stephan, he has been having some health issues lately. At first we thought it was his allergies just bugging him, but last Sunday when I came home he was having a time with coughing and breathing. So to the ER we went for a breathing treatment and some meds. Then on Monday to Dr. Wheelers for follow up, he feels that Stephan might be suffering from asthma. So he was places on Albuteral breathing treatments and some more meds. Also Wheeler scheduled some pulmonary function testing to be done.

Well since yesterday he has been coughing no stop and nothing seems to work, and then last night he shows me a bite under his right arm. This morning it was bigger and the coughing was getting worse. At church he started feeling dizzy and breaking out into a sweet. So by this evening we were back in the ER, he received another breathing treatment, only not just albuteral, and some more meds. We are to follow up with Wheeler again tomorrow to see what it is he is wanting to do and I want him to look at the bite if it is not better.

I feel like I am starting a roller coaster ride again. Please pray that all works out and that Stephan does not have any thing seriously wrong going on. I am a little nervous about the PFTs know the numbers and all. If they are lower than norm, I will want a heart cath to check the pressures in his lungs, just for my own well being, and possibly his. I might be over reacting but who can blame me.

Well that is what my last week has been like. Hopefully this week will go much smoother. I only have 36 hours to work and 12 hours of clinical, a couple soccer games, and a couple baseball practices and 4 hours of class plus 100 hours (or so it seems) of school work.

I guess I need to get to bed, tomorrow promises to be full with school, doctor and work.

Don't forget to sign the book I still like to read it

Love you all

Lori

Tuesday, April 12, 2005 1:07 PM CDT

Good Afternoon, I hope this finds you all doing well. Everyone here is fine.

Well tomorrow is my little Angel's 12th Birthday. It is hard to imagine that she would be turning 12 already. Like last year I am planning on going to EL Charros and letting some balloons go, so if any want to send a special Birthday Ballon to her please do.

I miss her so much, so days it is harder than others. I don't know how people say that you get over it, I don't think that you ever "get over it" There is not a day that goes by that there is not something that reminds me of Christina. I know at work they are more than likely so tired of hearing about here or something that she had done or said. I am thankful that they are nice enough not to tell me to shut up. :-)

Oh, Stephan is getting to go to Heart Camp, it is called "CAMP RYTHUM" St Louis Children's is putting it on, it is a 4 night and 5 days camp for kids who have had or have heart problems. He is actually looking forward to it, and I am so glad.

This weekend I am once again going to the converance for Children with special health care needs. I am hoping to come away from there with new information. I am going to be bringing it to some of the local schools around here to help see that the "Special Kids" in these schools are not being left out on things that they might need.

Josiah is playing scoccer and so far his team seems to be doing pretty good. I believe they have played 3 or 4 games and only lost one and that by only one point. He is growing up so fast. At times he seems like a little boy and then the next thing I see is him acting so much older. Though I will say that there are moments that I feel like I will be going crazy with all the changes he is going through, both physically and emotionally, and they say girls are bad................

I am going to post some pictures of my Birthday Angel, these are of her on her birthdays. Hope you enjoy them.

I know that this is kind of going everywhere, but that is how my mind is going right now. Hope to hear from you all

Love,

Lori

Friday, April 1, 2005 1:42 AM CST

This is a Picture of Christina and her Favorite nurse in St Louis, Carole. Christina wanted to become a Nurse Practitioner and work with Carole on 7W at Childrens

Good evening, well I guess I should say good morning.

I am at work right now and have a brief moment so I thought that I would take that time and write an update. I tried to get on done the other day, but for some reason the server was not allowing it be to done, so I will try tonight.

Things here are going okay I guess. I am missing my little ANGEL a lot here in the last couple of days. The other day I went out to the cemetery and just sat for a while, I took her some Pink roses and a little rag type rabbit. I still feel like a large part of me is missing. Sometimes I just want to sit in the house with the blinds closed and the phone off and no one around. I did almost that yesterday (my today, Thursday) When it came time to get the boys from school that was the time I got up and moved around a little bit. Then all I really wanted to do when we got home was lay back on the couch. I did not even want to come to work. But I will come through it, usually do.

Josiah has started scoccer already and Stephan will be starting baseball in the next few weeks. So we will be busy.

Oh I took my nursing interventions I final Weds and passed, I received an "A" I was so glad. Now I have to take a test tomorrow on line and I am not even all the way through the material :-} But I will make it. Usually do

Pray for one of our friends Ashley St. Romain. She is back in St Louis with Chronic Rejections and things are not promising. She was transplanted a little over a month after Christina was. She is 16 years old now and a beautiful girl. Please KEEP HER IN YOUR PRAYERS AND HER MOM AND DAD.

Well I guess I need to get back to work, I am going to try and see if I can get some pics updated of the boys.

GOD BLESS

Sunday, March 20, 2005 8:21 AM CST

Good Morning, I hope this finds the sun shining brightly where you are this pretty Sunday morning. I picture Christina looking down upon us with a huge smile telling each of us that "THIS IS THE DAY THAT THE LORD HAS MADE, AND WE NEED TO BE GLAD, JUST BECAUSE SHE SAID SO......."

Nothing much is really going on here right now, school is keeping me busy, same with work. It is hard to believe that on the 30th of this month I have my Nursing Interventions I class final, and then we are to start our first round of clinicals. It is almost scarey, to think that I will have responsibility of a patient, for their meds and all. Of course I will be supervised by a "real" RN. But this is all baby steps to the dream that we are to fulfill, and with Christina's memories and love to guide and push me I will get there.

This week is Birthday week, Stephan will turn 10 on the 22nd, and I will turn -- on the 26th, and then their daddy's would have been on the 28th. Stephan has been sick this week, but seems to be doing better, we think it is allergies and he was started on some new meds to help and I only hope they do, or else, he will have to go through the allergy testing, and though I have never had it done, I can't imagine it being too much fun. Their daddy use to have to take shots weekly for his allergies, but that was in the dark ages, things are changing every day.

Stephan is planning a sleep over tomorrow night, since they are on BREAK (HELP ME PLEASE). I told him he as allowed no more than 4 boys over, and of course I will be having some of my friends here too. They are on their spring break and are coming from Dallas to visit us and some other people they know. So it will be fun, I hope..................:-$

I am going to see if I can't update some pictures for some reason I have not been able too though they are here on the computer, what I am going to but up are pictures taken last week of the boys, you all need to see how much they are growing.

Remember to sign the Guest Book, a part of Christina is in me, I like to read it.

Friday, March 4, 2005 3:43 PM CST

Hi everyone, sorry for not updating sooner, but you all know me by now. :-)

Things here are just as busy as before. School, work, boys, and now that spring sports are starting we will be adding to the list, soccor and baseball. Not to mention I start clinical soon too.

I was nervous about starting clinicals, there is one hospital that we go to, and I have a problem with it,and I know I need to just pray through over it, but I really was not wanting to start them there. And well not only do we start them on Christina's 12th birthday, but it is at St John's which is where I work, and of course the hospital of choice for me and my family.

I have also been ask to speak at the Celebration of Life on April 7th. I was even able to get off of work for that night. I hope to also do more speaking for the Midwest Transplant Network. I am excited about this, seeing how I am wanting to be a transplant coordinator. I might also be able to be there when families are asked to give the gift of life to others. This is something I am a little nervous but excited about. I think it would be helpful for the family to hear how they can really change and save the life of another, from someone who has been on the receiving end.

It is amazing to think the path that life goes sometimes. The key is to be willing to walk it, though it may seem like it really sticks at times, but in the end it works out. The verse says, "All things work together for good to them who love the Lord and are called according to His purpose" I know the if my sweat ANGEL were here she would be helping me with all I am trying to do right now, and in a way she is helping me. She is and will always be my little "kick in the butt" to keep going, even when I feel like giving it all up. I don't want her memory to ever fail, or her life to lose purpose. I will do whatever it take to make things happen that I know she and I have talked about.

Well I guess I need to get ready for work and take Josiah to his friends house for the night and Stephan on a date. I think he has been needing some "Mommy time"

Thanks again for stopping by, I hope to get some picture on soon.

SIGN THE BOOK just like Christina loved reading it I do too and even the boys from time to time ask how many have few her page and who has signed it

Until the next time

Lori

Saturday, February 19, 2005 1:26 PM CST

Afternoon everyone

I just thought that I would do a quick up date one the happenings here at our home.

Well there you go........................not a whole lot going on. The boys are doing much better in school. I think Josiah has found whatever the key was to get him motivated with his school work and for hte last 3 weeks he has been doing so much better, enough to get off grounding a week early. Stephan is finding that he too can really do his work if he only sets his mind to do so. I don't know what the key was but something is clicking and far be it from me to question it, I will just be happy with the change.

Josiah is turning into quite the little man. It is hard to believe that he is 13 and I now have to purchase his clothes in the mens department, and that we are looking eye to eye. It is kind of funny, once in a while he will want me to fix his hair and I have to have him get on his knees so I can do it and see what I am really doing. :-) Whenever I think of how tall they are getting,

I can't help by smile in rememberance of Christina. When we found out that boy boths should reach about or over 6', Christina in her own comical way went up to the 6' wall we have that divides our living room from the dinning room and said, "Look this is us when we get older, I am going to look up at Josiah and Stephan and ask them 'hows the weather up there'" She was happy being little. I think she knew no matter what your height you can still do anything. She always wanted to be a Nurse Practitioner and be like Carole in St Louis, cause she is little and they would work together. In her eyes, little I think was just a mind think, you are as big as you think you are, and you can do anything.

We went out the her resting place on Valentines day and placed a HUGE heart with wings balloon next to her stone. And then I place a red shiny heart out there and after looking at he pictures we took, you can almost watch the sun set. I will try to post soom of them so you all can see what a beautiful stone she has.

School for me is going along okay, no real complaints, outside of having to take test everyweek, that gets old, but I guess if we are to see what we are learning. I think of what it will all lead too in the end, (only 1.5 yrs) and then in 3 yrs St Louis Childrens watch out here I come ;-)

Oh I am agoing to St Louis tomorrow afternoon, I have to work tonight, and then I will come home and sleep for a few hours, eat dinner with my boys, and then on the road again. A friend of ours is in the hospital there receiving ATGAM, so I told his mom that I would come up if she liked, and well I am off. I have never been so excited to get there, I don't know why, but I am looking forward to going. I guess I will know why when I do get there tomorrow.

Well the washer just stopped and I need to get my uniforms in the dryer and wash some more clothes and get packing. Thanks to everyone who still comes by and checks out the site, I am going to try to get some new pictures up right now too, and as I said in the past Don't for get to sign the book.

LOVE YA'LL

Lori

Saturday, February 12, 2005 2:42 PM CST

Happy weekend everyone

Well not a whole lot is going on right now. I am studying for a Nursing Theory test, oh what joy :-)and the boys are in the living room watching Shark Tales. They are seeming to enjoy it. I thought it to be cute when I watched it.

I actually have a real update to give everyone. Remember back in July of 2002 when Stephan, Christina's younger brother was found to have have an ASD, or a hole in the wall that seperated the upper to chambers of the heart, it is was able to be repaired at Childrens? Well he had his yearly follow up with Dr. Gelatt (the cardiologist that first saw Christina in Kansas City), and things are looking good. So for now he will not have to been seen for that for another 18 months. Dr. Gelatt said because the devise that was used is relatively new, the prodical is still uncertain. But everything was looking good in the echaocardiogram. Stephan even got to see what it looked like inside him, I don't think he was too impressed, maybe he was expecting something different. But it just looked like a white blob pretty much. He did think it neat how they were able to get a picture of his heart and with it moving on the screen. He was not to interested in the techincal aspect of how it was done though.

Yesterday the boys went to their school/church valentine banquet, they said they both had a good time. It was interesting that they both thought that they needed new clothes for it. Stephan was excited to find a real tie tie, not the clip on. They both looked real sharp. It is scary to think that my boys are growing up. I had to get Josiah's clothes in the men's department, I was not expecting that, well not yet. He is almost taller than me, a point that he likes to remind me of. lol

School is going good, I am learning how to study for the tests, I think, it seems different almost everytime, and they are all on the computer so when you hit enter for the final time it is submitted and you have your grade (without the curve) and hitting that button almost as stressful as starting the test. But I will make it only 1.5 yrs and a little more to go, oh we start clinicals next month already YIKES

Well got to run, love ya

Lori

oh if you want to check out one of Christina's friends new page you can it is www.caringbrigde.org/wa/brooke

Saturday, January 29, 2005 11:45 PM CST

PICTURES UPDATE WILL DATE PAGE SOON PROMISE



Evening folks

I know some of you are surprised to see another update this soon. Surprise!!!!

Well I just got home from the Heart Gala (aka BALL)and it was okay. I was sitting there amongs some of the doctors of whose patients I care for looking to the spot Christina and I sat 4 years ago on the 20th of 2001. I was picturing her in my minds eye walking around the room in her fancy dress showing off the painting she did with the framed picture of herself that was being auctioned off for the Heart Association. That piece of work went for $800. Then afterward she wanted to dance with any one who would let her, that or do a magic trick she learned, pulling money out of people's ears. lol

This time four years ago I was sitting in the PICU looking at my baby girl fresh from transplant on the vent but with pink fingers. I remember when I was able to finally see her after almost 12 hours the first thing I noticed was not all the machines and IV pumps (though there were a lot) but that her fingers were PINK, for the first time since forever. She looked so good! Yea she was puffy some what but to me she looked like the princes she was.

One of our friends, gave me a compliment and did not even know it, she introduced me to someone as Christina :-) We were always told that we looked alike, I use to tease her and tell people when they said that, that we were twins and I got the tall genes, although she was very quick to say that was not true and then to tell my real age, lol. Thanks Cindy you made my night.

There are times when I miss her so much, like right now. The boys are at grandpa's and the house is so quiet. If she were here and we just got home from the "Ball" she would be talking 90 to nothing, and asking if we could camp out in the living room. Of course I would tell her yes, but to calm down and get her PJs on. I can imagine her telling her daddy tonight about when she went to the heart ball and how this was the anniversary of her lung transplant. She would more than likely tell him that "Momma called this day my LUNG-A-VERSARY"!

I wish I could just reach out and hug her tonight, I can, in my minds eye see her smiling real big right now. I only wish I knew just what she was doing in Heaven this very minute, is she looking down on me and telling me that all is well. Is she telling me how much she misses our late night talks. That was the one thing she told me that she would miss. I miss them too, very much so!!!!!!!!!!!!!!!

Well it is late and we have church in the morning. I trust you all will have a good week coming up and blessed tomorrow

Thanks for stopping by, and please sign the book, as much as Christina like to hear who all signed it I like to see who all has been by.

Lori

Tuesday, January 25, 2005 7:31 PM CST

Evening everyone, I have a special friend here tonight and she is going to do an update tonight for me.

HI, my name is Calah,I was one of Christina's Best Friends. Some of the things we would do are: play hooky for school and go shopping, well I was the one playing hooky she was home schooling. Made Rice Krispy treat with a treat maker and fed them to her brothers, it was mess. One time we were making cookies, and she was using the mixer, it almost took her for a spin instead of the dough. Another time my little sister and I stayed the night with Christina in St. Louis at the Ronald McDonald House and stayed up watching a Whoopie Goldberg movie "Knights of Camalot". Then we went to the Science Center and the Magic House.

Well I guess that is all for right now if I think of anymore I will come back here and add it later.


Okay its me Lori again. Just wanted to do a little update, Christina's fourth lung-a-versy is coming up on the 29th. I am planning on letting some balloons go that afternoon if anyone wants to let some go too. That evening I am spending it in a perfect way. I am going to go to (as Christina would say) the HEART BALL. I am really looking forward to go to it. I know she will be with me in spirit and it will bring a lot of memories back. She had such a time when she went on the 20th of January 2001, the day before we left to relocate to St Louis to wait for her lung transplant. She was the princess of the Ball in more than just one way.

Well I guess I need to get off this things and get Calah home and do some school work and get the boys to bed. Keep watching for updates. I must might do them more often since I have a new computer with a fast internet.

Thanks for coming by

Lori

Tuesday, January 18, 2005 10:53 PM CST

Hi everyone:

Surprise, it's me. Sorry I have not been here lately to do an update, but I see that some of you have been faithful in checking in once and a while. In fact I have heard about it with not updating in a while.

Okay here is the load down on what is going on here in Missouri and at the McReynolds home.

I honestly can't remember what I wrote the last time, I am guilty in that I did not read it before coming here, so if I repeat myself that is why.

I believe I left off with plans on what we were going to do for Christina's Angel-versary. Well we went to eat at El Charros in Joplin, there was about 23 of us. Then Calah, Christina's best friend spend the rest of the afternoon with me, we made pies and laughed over the one Christina made two years earlier that had no flavor although it looked and smelled wonderful. It really helped me get though that day to have her here with me. I had plans on going to the cemetery, but for some reason I could not bring myself to do that. I usually do not have problems with going, but for some reason I just couldn't on that day. The weather even matched my mood, it was very wet and cold.

I think I mentioned that we were going to have the principal and his family over for Thanksgiving, well we did and it was nice. Then I worked that night.

Christmas has come and gone, it was okay. I promised myself and Christina that Christmas would be better for the boys, and they both really enjoyed it. Stephan told me that it was the best he has had. I am glad. I myself found it okay. While wrapping presents I longed for some little girl things to wrap, I thought about calling a few friends and having them bring some of their daughter's things over to wrap. But I didn't do that.

I was planning on going out to the cemetery on Christmas too, but still was not ready to go. I did finally go a few days later with the boys, and we let go a balloon for her.

What is strange I went out there not too long ago and there was someone else there cleaning up from another funeral, and though they were not really too close to where I was I felt like they were invading my space. I had to leave. I wanted to yell at them to leave and come back later and take care of all of that. But of course I did not.

Well, school started again, it was nice having some time off in between semesters. I am not full force into the nursing program. PRAYPRAYPRAYPRAY

I am actually excited to be starting, although a little nervous about all the work that I am going to have to do and balancing that with home, work and church. But I know this is were I am to be so here I go. I told someone that I got married, and they questioned me about it, then I say, "you know, for better and for worse in sickness and health, till death do us part", Then I told her that I had started the program.

The boys are doing okay. Though at times they drive me crazy, but I guess that is their job. Josiah is now an official teenager as of Christmas, and Stephan just realized that he is 9 3/4, he will be 10 in March. It will be interesting to see how he will handle being 10. I remember a dream he had, I think I shared it with you all where he had told Christina that she could not turn 10 or she would die, in his dream she was 8 years old. I will be praying hard for him. Though he is not afraid to talk about her and that I am very glad for.

Well I guess I should go for now I am going to try and add some new pictures on the page, so check it out. And don't forget to sign the guess book; I have a new computer so I will be looking in a lot more, this one is a notebook and a lot faster. Thank God

Until the next time, I hope to say it will not be in a few months.

Lori

Saturday, November 13, 2004 9:24 PM CST

Happy fall to all you you who read this page.

Sorry for not getting here for an update sooner, but for some reason I just don't have a lot of time to sit in front of this computer and wait, and wait for it to get to where I need it to be. You hear that as we age we get slower, well I don't know that I have slowed down any, but I know that this thing sure has. I think I can cook a six course meal while waiting for it to download something, or even just to get it to check the email,:-)

Things here have been busy some what, with school for me and the boys and with work and church and stuff.

I went to my first funeral since Christina this past week, it was for an 17yr old girl who was killed in a car accident. I taught her in Rainbows and first grade Sunday school. I almost did not go, I was not sure if I was ready and still am not sure if it was wise. There are so many little things and details about that week with Christina that I can't remember and it is really driving my crazy. I have asked a couple peple and gotten a few answers but there are somethings that not everyone knows.

It is so hard to believe that my baby girl will gone from me one year on the 24th. I was putting up my Christmas tree yesterday, Yes, I have it up already. I was looking at all the different ordiaments that we had gotten that last week of her life, and some even after she left us. Only after I got the tree up and the furniture moved, I realized that it is arranged the way it was (without the tree) this time last year. I was thinking about the last time Christina was in this home, she was sitting on the love seat, with her bucket that she would get sick in, and she was feeling horrible, that was right before she was admitted into St John's for the last time. Then I remember that night before that, when we had gotten home from her getting her IVIg, and it was just her and I here in the house and she was looking through all her mail for that day, there was so much of it the mailman had to place it on the porch and not in the mail box. We laughed at some of the cards and oohed and awwed at others. It was a good time, just her and I. If I only knew what the next four days held in store for us.

Here is what I am planning for her one yr anniversary in Heaven. NO SCHOOL OR WORK, I am going to go the the cemetery with a tree and decorated it there, then around one a group of us are going to meet at El Charro's in Joplin for lunch, this was her favorite place to eat, she like the one here in Neosho, but Joplin was her best. After that I don't know what I am going to do. I don't know if I will even be able to be around people, I guess we will see when that time comes. I am also planning on letting pink balloons go again too, though not 200, maybe two dozen. So if anyone wants to let them go that will be great too.

Oh speaking of balloons. Remember for her birthday we let balloons go, well a friend from Joplin let some go too, and on her's she had a pciture of Christina with ou address on it little note, saying, "Celebrating your first Birthday in Heaven, We miss you" on it. A couple of weeks ago I receive a letter from some people in Texarkansas, AR, saying they had found it. It was the highlight of my day, that was not going so great as it was. So if you all want to let balloons go too that would be awesome. I promised she would always have balloons from MOMMA and her FRIENDS.

Well I know this is short and really I could go on and on, but I think I might go and get the boys and their friend to bed, and then download some new pictures in the album, some will be ones you have seen before, so enjoy them again, I always do.

Thanks for stopping by still. It really does help to keep coming here.

Love and Blessing

Lori

Friday, October 15, 2004 4:54 PM CDT

Surprise

Wow I can't believe that it has been over a month since I have done an update. But, with school and work and the boys activities, things have been a little busy here.

Life here is almost getting into a pattern again. I have classes on M,W,F and I work those nights, so the boys go to grandpa's on the way to school and the they spend the night with him. It all works out good.

Josiah is back in the fall soccor games again and Stephan will be starting in basketball soon. I am glad that they have things that they enjoy. Josiah is also enjoying being a youth, he is wanting to go to every youth activity that there is at church. For the most part he is able to go. Stephan wishes he was a youth. I don't know IF I would be able to handle two at that age.

I can't believe that next month it will be one year since my little baby girl went to be with Jesus and her daddy. I find myself of resent thinking back to what we were doing this time last year. And on this date last year we took the boys to Doctor Wheeler for their flu shots at 1 in the afternoon and the next day Christina developed a temp of 103.2 and was admitted into St John's and started on Vancomycin and then the next day her vac level was 59 which is way to high and was transfer to St Louis. That was here last admission to St Louis Children's Hospital. She was there through the 6th of November and from there she was admitted into St John's and was home for about a week.

I have finally figured out what it is that I want to be when I grow up. I want to be a Pediatric Lung Transplant Cordinator. I have at least two years of school left for my ASN and then I will work on my BSN and go from there. I will either go to ST LOUIS or to HUSTON, where they are starting a transplant program for kids. I know what it is to go through all of that. And I so want to be able to help other parents and families to deal with the ups and downs of tranplant. As well at the many uncertainties that they will face.

I am plannning on going to St Louis the 29th for a walk-a-thon. It is for Second Wind Lung Transplant Organization. It is a wonderful organization. So if anyone wants to sponser me let me know via email and put lung walk in the subject and I will get back with you. I am taking Josiah with me to walk, I thinkw e need some mommy and son time this will help us get just that.

While I am there I am going to have my blood tested for a friend of mine whose daughter is in need of a bone marrow transplant. I told her I will go and at least get tested, you never know. I pray that I am a match for her and then I will be more that happy to donate some marrow for her daugher.

Well I got to get the phone and get ready to get the boys out to school for the school bomb fire and hotdog roast. Hope to update more often than once a month. Thanks to all who keep coming by.

Don't forget to sign the guest book, it helps me when I am feeling down and missing my little CHRISTINA to come here and just read what you all have written

Love,

LORI

Monday, September 6, 2004 10:37 PM CDT

Evening Everyone. I hope this finds you all back in the swing of things since school as started.

Things here are gong along okay. I am back to work finally and I have started school. So far it is not too bad, ask me later this semester and on into next semester when the Nursing program actually starts. I might be screaming "HELP" :-)

The boys are doing well in school so far. Josiah seems to be doing much better than he had in the past couple years. I believe that his school work was the one main thing that he was able to control during the hard times we had with Christina, and with her and I being away from him and his brother for so long. I believe now he sees that things are okay, and that no one is going to be leaving for unknown periods of time. Also, the principle that we have is great, he takes time out with Josiah and encourages him to work hard. But with the hard work come rewards, one being in the form of Josiah being about to do shop class with the high school boys. I believe he is the only one that is of junior high age, so the deal was made that if Josiah will work hard and get his goals done he will be able to participate in shop class, so far so good, he is really enjoying it.

Stephan is doing fine in school too. Though at times I think he lets his mind wonder off into places unknown to human man, and thus he ends up with lots of home work. Though I will say that he has been doing much better this last week with the amount he is bringing home. Thank God.

As for me I am getting a hang of going back to school. I actually enjoy my classes, the teachers I have are great and fun to be with. In my literature class I was talking with the teacher, one on one, about writing Christina's story and how do I bring something that is a lot of facts and dates into something that people would like to read, and to really get into the story of her life, and to feel as if they knew and understood her and all she went through. I have had some written from a while back, so I let her read it and she is going to tell me what she thinks, and give me helps to make it more personal and how to make Miss Christina come to life through those pages. I am open to any helps that anyone wants to give too. I do plan on using parts of this web page to help with the writting there is a lot of history here.

On another note. I had to work last night and was really hoping to be placed on stand-by because our numbers were low, but I had to go in, and I think I have mentioned in the past how my faith in healings is not quiet were it needs to be. Anyway, I had a patient who has been in for a few days, and this morning around 4ish, I was in his room doing my 4:00 rounds, and he asked me if I would come back when I had a chance to pray with him. I at first wanted to just leave the room and "forget" to come back in, but I knew that was not right, so I told him that I could pray right there with him, he has a little grandbaby 3-wks old who has Spinal Bifida, and they did a shunt and he was doing okay, but then things started going wrong, and he wanted me to pray with him that God would touch that child and his parents. At first I was not too sure what to pray, but I made it through, I did not tell him I was weak in that area, but I think God was using that to tell me that He still is in the healing business, and that I just need to lean on Him, even when I don't know why and things don't make sense. I am glad I did not call in, see I was not feeling the greatest myself, I am still having some issues with my stomach to deal with. But, I will get through it. With God's help. I just thought I would share that with you all, you can pray for this baby and his mom and dad too, okay.

Oh there are a couple kids in St. Louis that you all can pray for too, Kaycey G. and Becky E. They are both having some problems, Kaycey is waiting for her 2nd lung transplant and is having some major problems right now and will have some test done tomorrow, (Tues, 9/7) Becky has had two lung transplants and is having some set back right now, please keep these girls in your prayers, they were friends of Christina's. Also remember their parents. The fear of losing your child is always very real to any of the parents with kids like ours.

Thanks so much for being my unseen friends, some I know and many I don't. It has been a great 'sounding board' for me at times.

Lori

ps over look any mistakes I did not proof read this :-)

Friday, August 20, 2004 9:37 AM CDT

Good Morning.

I want to share something with all of you have still stop by. I was going through some stuff and found this along with Christina's schedule for her pre-transplant evaluation to see if she a candidate for transplant. This is something she did almost one year post transplant, the actual date was 12/26/01. I typed this for her as she dicatated it to me. Moms are good for something. I trust you will enjoy reading it as much as I did. It was a little something that I think she presented to me to help me know that we did make all the right choices.

CHRISTINA'S LUNG TRANSPLANT STORY

Hi my name is Christina Elaine McReynolds. I am 8 years old. I am going to try to tell you my story about my lung transplant and why I had to have one and what I think about it all. My Momma is going to help me some.

I can't remember that far back, but I will try and tell you what I remember.

The first thing I remember was when I went to St. Louis Children's Hospital for a heart catherization. I was going to be started on some medicine called Flolan. I was told that it was going to help my lungs work better. And that i will have to carry a little IV pump in a backpack or purse all the time.

I remember going to the room for the first time on the 8th floor and my Pastor and his wife, momma and a friend were there. The nurse came in and put some "numbing cream" on my hand, it looked like toothpaste, so I would not feel the IV going in. One of the student doctors came i and looked at me and later she pushed me around the floor in a dolphin, it was a lot of fun. I was in the hospital for a week after the Flolan was started.

These are some things I remember about being on Flolan, I did not like. The one thing I did not like at all was the dressing changes that momma had to do about twice a week on my Broviac. I did not like them becaue the tape hurt coming off and the alcohol stunk some. I did like all the neat backpacks and some of the purses I got to carry, one of my favorites was Eyore from Winnie the Pooh, (momma does not know how to spell that) I got it from Kimberly Mann, one of the Child Life people at Children's. Another thing I did not like at all was that I was not able to swim. I was only able to get in a little "baby" pool, and had to watch out that my Broviac did not get wet, or my IV either. I like going to see all my new friends at the hospital when I had to go in for heart caths, we did that a lot. I did not like to home school either. Momma had to do that because it would not be a good thing if the Flolan got stopped or if my Broviac got pulled out. It got pulled once and it hurt really bad.

Sometimes the Flolan would make me feel sick and I would get a rash all over. Momma would have to call Carla Driver at Children's to see how she was going to change the medicine. I remember once before I was on the list for my new lungs I woke up about 3 in the morning and was coughing and blood came up, a lot of it did. I went to the hospital and then I was put in an airplane, momma was with me and was flown to St Louis.

We went to Florida in August of 2000 with Make-A-Wish and when we came home I had to go back to St Louis and have lots of test done and then I was listed for a lung transplant. I remember meeting Debbie, our nurse, she was funny. Debbie helped me understand what it was that they needed to do to help me get healthy.

On January 21st of 2001 Momma and me relocated to St. Louis because I was next on the list to get my lungs. We stayed at the Ronald McDonald House on Park Ave. in room 6. We were only there about a week and on January 29th at 2 am our phone rang. It was the hospital calling telling us that it was time for my lung transplant. Momma woke me up and I was not scared but I want to go to the hospital in my pajamas. When we got to the stop light on the way to the hospital momma and I prayed for the little child's mommy and daddy. We go to the hospital at 3:00 in the morning. I I was a little upset because my beeper did not beep. I watched 101 Dalmatians and did not go back to sleep. I really can't remember anything else until a couple weeks after my transplant.

What I remember after my transplant was being in ICU and one of the girls from Child Life came down and played with me, we did some shaving cream stuff. I know I was in ICU for a long time. Momma will have to tell you about that because I don't remember a lot about it. I do remember being suctioned because I was on the vent, I HATED IT.

I remember when I finally got to a real room, the TV station from home came up to see me.

When I got out of the hospital in March, the next day I went to the Magic House with a friend who came up to see us. Then we had to be at the hospital everyday for physical therapy and clinic and PFTs. We had to stay in St Louis until June 16th.

Right after the 4th of July we had to go back to the hospital and have an open lung biospy, they did two of them. We had to have it because they we looking for Bronchiolities Obliterans (BO). If I had it, then it would mean that I would need another transplant. Momma asked me if I wanted to go through all this again and I told her, "I would as long as I did not have to stay in the ICU as long,a nd I would do anything to live." WE stayed in St Louis until the end of July.

Momma asked me what I think about having a lung transplant and what I would tell other kids who were going to have to do it, if it is worth it or not. This is what I told her,

"WHAT I THINK ABOUT A TRANSPLANT IS I LIKE IT BETTER THAN I DID BEFORE TRANSPLANT, I FEEL BETTER AND ALL THAT. I WOULD TELL ANY KID THAT IT IS WORTH GOING THROUGH ALL THE HARD STUFF YOU HAVE TO DO, IT IS REALLY WORTH IT, YOU WOULD THINK SO TOO!"

Some of the things I have to do everyday to make sure I stay healthy are, I take my medicine, a lot of it, do PFTs and all that, I walk the tread mill (I really don't like doing that), and see my doctor if I feel sick. And go to St. Louis for check ups."

That is my story about my lung transplant. I hope this will help someone understand better. I hope this will help you.




Thanks for stopping by and don't forget to sign the guess book, I will be putting new pictures up soon.

Lori

Thursday, August 12, 2004 11:31 PM CDT

Hi everyone

Can you believe that I am updating so soon. Miracle do happen!

Well Christina's memorial stone is in place, it looks so good. The picture on it came out very well. Stephan was feeling it and thought it was neat. When you drive to where she is, just like she did, her stone stands out among the rest. It is about 3-4' tall in a tear drop shape with a hand etching of her on the front and her brief geneology on the back, all in shining jet black.

I still am not too sure how Josiah feels about it all yet, he really was not wanting to look at the stone, well not like Stephan was. I think he is still and may aways have a hard time dealing with the lose. There is a big whole in our lived, and no one will ever be able to fill it.

I came across a picture the other day of Richard holding Christina and the first thing that came to my mind was, who would have thought when that picture was taken I would be here with out the two of them. I can imagine Richard holding Christina again, only she is not a baby any more.

I miss her so much. I don't know what it is the brings on emotions and memories, I guess there are a lot of little things that do it. Like for one, I have a canopy type thing over my bed that I just put up the other day. This was something that Christina and I thought about doing for her, but we were never home long enough to get it done. Then her stone and then the pictures, etc.

One of the girls from St Louis and I were talking and I was telling her that I was beginning to feel like Christina with all the test that I have had done in the last couple of weeks and the stomach issues that I am having now. She told me that Christina is just letting me know that she is with me, she is a part of me. I really think part of that is true. No, she is not who is making me have the problems I am having, but she is still a part of me and I know that she is with me in everything I do. I think most of it is that my body has slowed down and that the adrenaline is slowing down, and the last 4+ years have caught up with me.

I am also getting ready to start school on the 23rd, ya'll need to start praying for me, I am taking Algebra -- help--I really enjoy going to school but, it has been a while (again) since I have been. I was in a good pattern for a while when I was getting my pre-regs done for the Nursing program and then when I was in the program. I hope to do as well I as I was doing, I would hate to see the GPA drop, it would be cool if it went up, like to a 4.0. Right now it is like 3.54 or something like that, thanks to anatomy and physology. But that is okay.

I have been to the doc and he has finally released me to go to back to work again, only not until the 26th. But I can get back. The only thing he told me was that I can't work out, I can do cardio, but no strength :(. I have been going to Curves for the last 6 months or so, and now it will be 6 months before I can do that type of work out again. He said I could cause a hernia, part because I had some weakness in the right lower quad, or lower part of my belly and then from the surgery.

A friend of ours just had her gall bladder out on Monday and she was back to work today, not all day, but she was still there. I told her that it was not fair, but then we do have very different jobs, her's is behind a desk and mine is on the floor with sick and sometimes very sick patients. Then to put it in the words of my surgery, I was very sick. I guess I was sicker than I really knew, there are like 4 days that I really don't remember much about being in the hospital. (Though the bills are starting to come in from the insurance and ouch)

Well that is enough about me. I trust you all are doing good and that those of you will children will charish each day you have with them, don't spoil them, just love them, hug them, hold them. Each day is a special gift, and you will always remember things you say or do with each other forever!!!

Until later,

Lori

I am going to change the pictures too

Tuesday, August 3, 2004 6:04 PM CDT

Hello, Long time with no up dating. Sorry.

Things here are going okay I guess. I feel like I am starting to take Christina's place with the doctors. I have had some problems with my stomach and gall bladder. I have spent a week in the hospital, have been scanned from head to toe, even a VQ scan. I finally had surgery and had the gall bladder taken out, now if I can get the stomach issues under control I will be happy.

I am finally relieved to know that Christina's head stone is finally on it's way. IT has taken right at 7 months to get it. I was about ready to tell then forget it and look somewhere else. I am anxious to see it. This is something that I have been needing for a long time. I also finally got the picture back that they were using to etch her picture on the stone. It has been placed back on the entertainment center where her frame has been waiting empty for so long.

I has been almost 9 months since Christina left us, at times it seems like she has been gone for so long and then other times I can't believe it has been that long. There is not a day that does not go by that I don't feel her close to me, or that I am not reminded of her. The other day I was sitting in "her" garden spot thinking of how much she would love what we have growing. There is still room for more if any one wants to send something to plant, we have a butterfly bush and a sweet pea tree dedicated in her memory, so far. If you want to can send then here are 610 Washington Ave, Neosho, MO 64850

The boys are doing good, Josiah went to camp this year and Stephan stayed home to take care of momma. Josiah is getting ready for the fall soccer season. He is looking forward to it.

Well I know this is short but I need to get going and get dinner on for the boys and grandpa. Keep checking in and signing the book. I will try to get some more pictures up later tonight

Thanks for stopping by

Lori

Wednesday, June 16, 2004 4:59 PM CDT

Hello

It has been a few weeks since I have update in here. So here I go. I hope you are ready. It seems that sometimes I have no idea where I am going to go with what I am going to write. I just let my mind go free. I think this is about the only place I really do it.

Not a whole lot is happening here. One thing that has me a bit upset is that the head stone that I ordered for Christina back in January is still not in. I have no reason for it either. At first it was that the etching of her picture was going to take a little more time, but now I get, "we will find out". I will push it more later next week.

I am making plans on going back to St Louis this weekend. I will be going to Ill. and the church that Christina and I always went to when we were in town, it is the same church where we went the first Sunday, January 28th, in St Louis for tranplant. I remember that Sunday so well. Brother Roy made a big to do over her. She through out that day told us that she was tierd of waiting for her beeper to go off. Mind you we were only in St Louis one week, and the average is over a month before you get "your call". Brother Roy told Christina taht we could pray that way, and we indeed did get the call at 2:00 am on the 29th of January. Talk about your miracles. Even the people at the Children's were amazed as to how fast she received the call.

Then on Monday I will be going into St Louis and to the hospital, I will be meeting some friends from Chicago, whose son had a living donor lung transplant and will be in for follow up appointments. I am looking forward to see them. I will be visiting everyone in the hospital, I am sure it will be an emotional time for me, but a time I think I will need to have. I have made a 'plague' for the lung transplant team, it has a picture of Christina standing in the garden on the 8th floor. Then a little note of thanks listing some important people and departments that played a part in her care. If I were to name everyone I know for one I would miss someone out, so for some departments I listed that department by name, and then added at the bottom, "and so many more who have touched her life". I am not sure as to who I will actually had it to, more than likely it will be Dr. DelaMorena and Carole Branch. If I can get them together. I would like to do it on 7 West. And then that evening several fromt he hospital and us will be going out to eat. I think it will be fun.

One Tuesday we will be going to a Cardinal's game that evening, this again will be the first game that I will be attending withough Christina. I will never forget the first game we went too. It was with several friends from the hospital, and one of the 'sales' people were walking around calling out for people who wanted "BUD LIGHT" and little Miss Christina said she wanted one. It was so funny to see her little face when I told her that it was beer, she was like "Well I didn't know that". Now if she were here I would be in like major trouble because she did not like me telling the story.

I will be coming home on Weds after Daniel's Bronch. I know that there will be a lot of remembering. Most of good times, and few of some hard times that Christina had. But she loved Children's and if she were still here with us, she would tell you that she will one day work there on 7 West with Carol Branch as a Nurse Practioner. Carole was one of her Heros.

It seems I am going to be doing a lot of first without Christina. Even tomorrow morning I have to talk Josiah to Dr. Wheeler for a follow up appointment after having to go to the Express Care Unit for strep this last weekend. His appointment is for 8:30 on Thursday. That was always one of Christina's appointments. I guess I will just have to tell Dr. Wheeler that I miss seeing him early in the morning. LOL

This week I have been dong a lot of reflecting back to different things that have happened to us, to Christina over the last few years. Part of it started when one of the girls I work with asked me if I thought all of this transplant stuff was worth it. All I could tell her was YES a thousand time YES. Without it I would have seen Christina through her 10th yr. I honestly believe that. The way things came to play with her transplant, to the very end. And knowing that I have done all that was within my power and that the doctors have done all that was withing their powers. Yes I would do it all over again if I had too. Christina would have too, she told me that in no uncertain terms. If in fact it were not for her kidneys failing she would have been re-listed for another transplant. She was a true fighter from the beginning to the end.

Christina is my inspiration to take each step forward and to "bravely go where no one has gone before" SHE IS MY TRUE HERO

Unil next time

Lori

Monday, May 31, 2004 10:28 PM CDT

Good evening. I started to write Happy Memorial Day, but I don't know what people say Happy. It is a day of remembering our loved ones and though there are happy thoughts there are sad ones too.

Sorry did not mean to start on a sour note. but I guess that is a little bit where I am today. I was think earlier today that this time last year we were all at the church, Josiah my oldest fell off the swing and spang his hand, but was alright and then shortly after that Christina and I headed toward St Louis for one of her many check ups and hospitalizations. Today, we were at the church again, and thankfully neither of the boys were hurt. They had fun.

The day started by going out to the cemtery with flowers, (only fresh ones will do) and spending some time there and watching my fatherinlaw do a 21 gun salute with the VFW for the vets. Then Stephan and I, Josiah was with a friend, talked some about no matter were we ever moved too, we would always make sure Christina had fresh flowers on her grave. Even if we had to come home and do it ourselves.

(I can never get use to typing or saying Christina's name and the word grave or death together, I get a sick feeling in my gut)

I am trying to encourage myself in the Lord more, although I know right now it does not sound that way, but really I am. I have a couple of songs that I like and will play them over and over again to help me. One of them says,
"Every second of every minute, every minute of ever hour, every hour of every day, He will be there for you, 365 days a year........."God is always there. They other one goes, and this one I might type more,
"Things change, plans fail, you look for love on a grander scale, Storms rise, hopes fade and you place you bets on another day.........times flies, hearts turn a little bit wiser from lessons learn, Sometimes weakness wins and you loss your foothold once again...........When the going gets tough, when the rides too much, when your just not sure enough.....Jesus will still be there, His love will never change, sure as the steady rain, Jesus will still be there, when no else is true He'll still be loving you, when it looks like you lost it all and you haven't got a prayer, Jesus will still be there..........."

These help me some.

I was talking with a friend a little while ago and I was teling her how at times it seems that eveen my very being revolved around Christina, and not just mine but the boys too. They have questioned me several times, 'Momma if Christina had not died would so and so still be coming by or calling' I don't know what to tell them. Because to be honest that is how I feel. I feel that at times we have lost some good friends through all this heart ache. I know a lot of it is people don't know how to act or know what to say. but,,,, we are still here and we are still breathing. Until God changes all of that too, we still have feelings, and sometimes it seems like we (I) wear them on my shoulders.

The boys had their award night on Friday. I did not think that would be hard for me. But, with little sleep from working the night before,I was decorating for the graduationa nd the only thing that kept coming to mind was I will never decorate for Christina's graduation, then her wedding. She would never get another scripture or honor roll trophy, or never walk down the aisle with all the kids at school. Even today, while watching the kids play on the jungle gym we gave to the school in memory of Christina, one that we had at our house before transplant, I was thinking of the times she played on it, and how I will never see that again. My pastor tried to comfort me Friday with telling me that she has graduated the graduation of all graduations, I know she has received the award that we all hope to receive someday. In my heart of hearts I know that, but in the mommy heart, the heart that longs to hold her and talk with her one more time, it did not really help.

While out to the cemetry today it felt good just to sit there and let the sun shine down on me. For some strange reason I felt a little bit closer to her. Almost happy. I also found myself walking over to her daddy's grave and telling Richard that he better take good care of my Baby, I know he will but I just had to tell him that. I know that might sound strange but........maybe I am a little strange :-)

Keep praying for us. I know that God will see us though all of this and help me to make sense of it all someday.

Thanks for stoping by again, your can't imagine how this helps me at times

sorry if there are any errors

Monday, May 24, 2004 12:30 AM CDT

MORE PICTURES


Happy Monday to everyone. Today the Sun is out after a rainy night. It promises to be hot, right now it is about 90 in the sun.

I thought I would try to do some better in doing updates. so here I am.

I am feeling a little down today, but I will make it through. Christina has been away from me now for six months. Sometimes it seems like a life time and other time it seems like I am reliving everything like it was yesterday.

I was at the insurance company the other day getting life insurance for everyone, and it is amazing how much our life revolved around Christina. The insurance agent would ask me questions and I would think back to something that we were doing with Christina and then I would know the date. For example when Stephan had his Heart Defect repaired, I knew right when it was, because Christina had doctors appointment in St Louis the next day, and we ended up staying there while a friend brought Stephan home. I was even looking through my date book from last year, and it is amazing how I can put myself right there at each event that happened. I wrote every thing down, from a med she was getting while at the hospital to the time she was in the play room or even the school room.

Last night at church, we had someone preach for my pastor because he was away, and the minister was preaching on a tug of war that is with in us. When we have God pulling on one side and the devil on the other. We are in church but then part of the world is tugging at us too. It maybe because of something that we went through or are going through. We have questions and are not finding the answers. I felt like he was talking right at me the whole time. At times there is a part of me that wants to give up on God and church, but then I know that is not the answer. I have to be able to see my little girl again. She is waiting there for me. That is the biggest pull I have right now. I know I need to give everything to God, but at times it is so hard. I get mad at Him for all of this. Last night while I was praying it almost seemed like even the devil himself was right there fighting me, telling me to look over the last 8 years and all the heart ache I had, and if God was a loving God then this would have never happened. Then God would show me all the joy and good times we had, all the "good" that has come out of the troubles the I have gone through. I am sure that a tug of war will go on for a while. but I know who is going to win. I WILL SEE MY BABY GIRL AGAIN!

This weekend has been a lot of looking back. Like right after Christina joined her father. I was so ready right then to give up on God, I am talking totally giving up. But, that was when God placed a good friend ther, and he asked me some important questions, that slapped me in the face. It was becasue of him I did not give up. Those questions still ring in my ear. I find myself asking those same questions each time I feel like I am losing ground in my relationship with God. Grant it, it is not like it was. But, I trust it willg et better than it was in time. I have to remember all that He suffered too.

I am also glad I have kept the page going, although, I have not been writing a lot lately. Even though I know that some of you may have no idea what I am feeling or going through, and trust me I pray that you never will. But I know there are some of you who know just what I am feeling. I am glad that this is here where I can 'vent' what I am feeling. I know that this will also help you know how to continue to pray for us. Even though Christina's pain and suffering is ended, our's continues, when will it end, only when we see Her again.

Sorry if this sounds a little down, but ........

Thanks for coming by

Lori

Sunday, May 16, 2004 5:08 PM CDT

Surprise

It has been like for ever since I have done an update, sorry.

Things here in Neosho are keeping busy. The boys are almost through with school and Josiah just finished his soccer, I think coming in 2nd place. Stephan just had his first game in baseball, and won, 19 - 2, not a bad way to start out the season.

As for me, I am still working nights, though right now I am doing some days, as I am in training to learn how to do doctor's orders, etc on the computer. Oh what fun.

Whoever said things get easier with each day that passes was not telling the truth. The last several weeks seem to have been hard on me. I really can't explain why or anything, but it has been. I find myself spending time here are the desk just looking at Christina's pictures that are in front of me. I found on the other day what was taken in May of last year with one of the Green Bay Packer players. Wow how pale and thin she was looking, that was when we had started the Atgam. Though she was pale she was looking good. She was happy and full of attitude and smiles. But then that is the best way to describe Miss Christina. With her eye rolling and her little "whatever" or "yea right".

I even find myself reliving the last days of her life her with me. Not with regret, because I could never regret anything that we went through or the choices we made. I say "WE" because Christina and I always talked about what she was going through and she had a voice in her care. I thought that was very important to her and to me. So I have NO regrets. I only wish that we had more time. I also am finding myself wanting to ask God "Why?" again. Though I know He has reason for everything, I still ask. I will more than like ask until the day I see Him face to face.

Christina was my strength. I miss seeing her brave smile, I even miss when she was not feeling so brave, but would try to be that way. I am learning, slowly to find strength in the boys. They are such good kids. There strength to beable to go on is amazing. I don't see any bitterness in them. They have every right to be that way, yet they aren't. I am truely thankful for that. They can tell when I am have a "not so good day" and for the most part they try to make me smile or laugh. It is amazing the understanding that they have. They too wish for their Sister back, but not like she was, they hated seeing her so sick, and seeing us have to be med flown to St Louis time and time again. They told me that if we ever had another little girl, that NO ONE COULD EVER REPLACE CHRISTINA. Though it would be nice to have a sister. Welllllllll :-)

To the person that signed the guess book with the poem of my sweet little Angel writing Mr. Hallmark a letter about a Mother's Day card. THANK YOU FROM THE BOTTOM OF MY HEART. I was having a very hard time when I opened up the guest book and saw that there. I just started crying, something I guess I really needed to do. It reminded me of one of the talks Christina and I had last September when we were talking about her going to see Jesus and her Daddy. She told me that was one of the things she would miss the most, out late night talks. I told her of a little story I read about a boy writing his mom from Heaven and that it was such a special letter the God allowed it only to be seen by her. THANK YOU!!!

I know that maybe someday my life will not see so void, but for now I am trying hard to fill the emptiness with my SWEET ANGELS MEMORIES. In her little garden spot I have this little statues I found that lights up of an Angel standing over a little girl in a flower printed dress and pig tails praying. Each evening as I pull into my drive I see it and know that Christina is watching over us and that she is as near to me as a thought. (if any of this makes sense :-}

Well I need to get Stephan's going to finish his homework. Hopeing to hear from you all soon. I am going to update the pictures now too.

Thanks so much for all you support

Lori

Monday, April 12, 2004 1:10 PM CDT

Happy Easter, a day late! Sorry that I have not been updating in a while, sometimes it is hard to do it. One would think that something like this would not be too hard but it is.

Yesterday was an okay day I guess, we really did not do a whole lot. We went to the hosoital and visited our pstor's wife and then we went and brought some candy to the nursing staff on 7 west, the pediatric floor. And after that we spent the afternoon at a friends house and the boys did an egg hunt, soemthing Christina would have loved to had a part in. I don't think holidays will ever be the same.

I am going to ask everyone who reads this to do something special for us. Tomorrow is Christina's 11th birthday. On each birthday we always let balloons go to her daddy. This is something that she started when she turned 3, and it was her first birthday without her daddy.

During one of our many talks I promised Christina that I would not forget to send balloons to her all the time, especially on her birthday or special days. So tomorrow at 4:30 several of us from around here and others that are not able to be here will be letting go balloons. Then after that we will be going to her her favorite resturant for a celebration of her. Tomorrow evening we will be attending the Celebration of Life, this is with the Midwest Transplant Network, it is to honor the donors, their families, recipients and those waiting for the Gift of Life. Christina was able to attend one of these a couple of years ago and really enjoyed it, she even made some new friends, but where did she go that she didn't meet new friend. ;-) Last year we were to go to it also, however we ended up at Children's.

So if you all could take a moment and remember that on April 13th a special little girl came into this world and touch so many people, more than many of us will ever touch. Thank God for her! Without the chance of knowing her, my life would be emptier than it is now. She fullfilled so many things in my life. She touched my life in a way that no one will ever touch again, and for that I am so thankful.

With much love,

Lori


I wqill try to update the pictures later today or tomorrow sometime after I sleep from working tonight

Monday, March 29, 2004 12:58 AM CST

WOW!! It has been a whole month since I have done an update, sorry it is not that I have not thought about it, but just have not had time to sit here very long.

Things are going along okay. I am happy to see the spring starting to come finally. Christina loved watching the flowers blooming, we have some 'Naked Ladies', or Surprise Lilies the come up each spring, and she would go out there and pick as many as were in bloom and bring them in to me with a big grin on her face. The first of next month, which is just around the corner, we are going to start our land scaping, finally, and plant a special garden just for her right near the door, so when I open it up I will see it first thing.

It is hard to believe she has been away from me for four months. Sometimes it seems like a life time ago, I miss her so much.

One thing I realized just recently is that, I seemed to have lost some of my peace, the kind that can only come from God. And I realized that since last June and July when I learned that Christina might not live until the end of the year, I started to build a wall around her and me, a wall that I would not let no one through, including God. I guess in my feeble mind I was protecting her from death and me from the pain that death brings. I know we had some awesome talks and I know that she was more than ready to with God and her Daddy, but I was not ready, and I was never ready for that time to happen, even when it did. I think my wall started getting too tall. I was beginning to sense how it was effecting every area in my life.

Well I think the wall is starting to come down. Brick my brick. I am starting to let the sun shine in more. I want to be able to feel the love that Christina had for life, for everything. I want to be able to spread what she had to others, her brothers, friends, and people we don't even know. I can't stay inside my wall. Just like a plant if we keep it from sun light and water, it will fade away. I don't want that to happen with me or with Her memories.

Life is truely different with out my little angel here with me. But, for Her life is fuller and brighter. So I want it to be for me and her brothers. No matter what the future brings for us, I want it to bloom just the way Christina has. Full of color and full of love. I want us to have the joy that she had in life, and the joy she has now, though in a diffent sense.

By now you all know that sometimes I just ramble on, and really none of this might not make any sense to you, but it helps me to get my thoughts and feelings out. To be able to express things that I normally would not express else where. I was reading over some of the past entries and there are a number of times I have done just that. Thanks so much to all who read this for being so kind as to letting me just vent, whether it is frustrations, joys or sorrows.

Well, I really need to go and get some new pictures up in the album and then start getting ready for work and dinner on and the list goes on and on and on.........

Thanks so much for being there, and for being true friends, even though a lot of you I have never met, I feel as if I know each and everyone of you personally, and who knows someday we might just get to meet.

Thanks for everything,


Lori

Sunday, February 29, 2004 0:55 AM CST

Hello

It is very late, but I thought I would do a quick update about a phone call I had with Dr. DelaMorena, Christina's doctor in St Louis.

As many of you knew we did an autopsy on Christina, to see if the doctors in St Louis could tell just what was foing on. The results from the hospital here ust showed her having renal failure, and that was the cause of her death. They were unable to pick up on the Broncholitis Obliterants. After talking with Dr. DelaMorena, I learned, or we all learned that Christina had extensive BO, with some nucrotic bronchilo pneumia (SP) and end stage lung disease. From my understanding, Christina's air ways were all but closed off. And she did have total renal failure.

This makes more thankful to the way she did leave me. I prayed that IF God wanted her that He would allow it to be her kidneys and not her lungs. Of all things I did not want her to suffer from anything. It was only a matter of time before her lungs totally gave out. I was watching her daily need more and more oxygen, while awake and while sleeping with the by-pap machine. She was up to 4-5 liters of oxygen, especially while sleeping. We were even accepting lowing ovygen levels during the night. If she stayed above 85e were okay with it. I was not really okay with it, but that was what I was instructed to do. I knew that by accepting lower numbers meant I was accepting the problems. Something that no one could fix.

It is hard still to think that just a few months ago I had a little girl here with me. I did not mind at all doing her IVs, infact we did them together. She became the little pro at starting her pumps and stuff. She knew what she needed and when. She also learned the what meds she was able to push through her iv and the ones that had to go on the pump. And she knew how long to push the ones that she could. She would have been a great nurse.

I don't want people to forget about her. Sometimes that is what it seems. Life goes on, I know that, it has in our home. But, sometimes, it seems like people wont talk about her. People that knew her, people that were around her all the time. I want to talk about her, I want to remember different things she had done. But I don't think others do, at times when I talk about something she did, people are okay with it and then they change the subject. Almost like they don't want to hear it no more. I know sometimes, it is just that they don't know what to say. But you know that is when they need to just listen, really listen.

Christina was and still is an AMAZING person. She has a lot to teach each of us. Everyday there is something that we can think about and smile, grow stronger and go on. Life goes on not only for us left, but it is going on for Christina too. I don't know what Heaven is like, but I like to imagine what she is doing. When I hear of another child dying I imagine Christina running up to them and telling them all there is to tell about Heaven. Showing then around, introducing them to Peter, Paul, her Daddy,and so much more.

I don't think I will ever 'get over' her death. I am learning to cope, and I am doing good for the most part. I have seen the lives that she has touched, I have heard the stories of those she has touched. That is in itself a healing bond.

NOW, FOR YOUR PART. PLEASE, EMAIL ME SOMETHING ABOUT CHRISTINA THAT YOU WILL ALWAYS REMEMBER, A LOT OF YOU KNOW HER PERSONALLY, SOME ONLY THROUGH THIS SITE, BUT I AM GOING TO TRY TO COMPOSE A MEMORIAL STORY OF CHRISTINA AND I WOULD LIKE TO INCLUDE YOUR STORY ABOUT HER TOO. THANKS SO MUCH, THIS WILL ME A LOT TOO ME.

Well It is late and I need to get to bed, Church in the morning and I have to work tomorrow night. So until next time. I will be checking in daily, or you may email me, but make sure you write something in the 'subject' box about what you are emailing, if I don't know your email, I might not open it up.

God Bless and have a great Sunday. Hope you enjoy the new pictures

Lori

Saturday, February 21, 2004 6:45 PM CST

Hello, I trust all are doing well.

Things here are going along about the same. Nothing really new to report.

On Friday Stephan had a Cardiologist appointment to check on his ASD repair to make sure that things are still where they belong. Thankfully there were no changes and he is 'free' from having to go to the doctor for at least another year.

The boys seem to be settling back into school and doing much better over all. We still are having some battles, but for the most part they are doing better.

On Thursday St John's Regional Medical Center had a memorial service for all of those who past away during the last quarter. Josiah and I attended along with Dr. Wheeler. Stephan did not want to go and that was fine, he had a bird house to work on in Royal Rangers. We are planning on placing it in a little garden that we are going to plant this spring for Christina.

During the service one of the ministers talked about allowing the one we lost inspire us to achieve something in our life time. I think Josiah has taken that and is going to use to to keep him motivated with his school work and in helping him chose a life long goal. I told him to set little goals and big ones, the little leading to the larger ones.

Well I need to get going and get dinner ont he table I truse all will conitnue to do well. Please pray for several children in St Louis two who have just recieved their gift of life, and a few families who have lost their battle, only to win a greater on in HEAVEN.

Thanks for stopping by, please DON'T forget to sign the guest book.

Lori

Sunday, February 15, 2004 3:43 PM CST

Happy Valentines Day to all of you who still check out the web site.

Yesterday was an ok type of day. I took the boys and we wenet to the cemetary and left roses and a balloon and the boys let two of them shaped like a heart go to Christina.

I was thinking back to this time last year and on Valentine's day we closed on our house. It was the first Valentines not spend in the hospital in 3 years for her. Then on the 15th, which is one year from today, we celebrated Christina's two year anniversary. It was a special day, she went and had her hair done up, and her friend Calah spent the day with us. I joked with Christina about her having a $30 hairdo, and that it cost more than the cake. LOL. I even remember the cake, it said "HAPPY LUNGAVERSARY" and it was a marble cake with cool whip frosting and bright puffy flowers on it. She picked it out and was so pleased with it. She had so much fun at her party, even Dr. Wheeler came to it. Then on the 16th we headed to St Louis for an evaluation.

On the 17th at 2:30am she woke up vomiting blood, old looking stuff, and that started her vomiting. She was in the hospital for about a month then. That really seems like a life time ago.

I have started to stop thinking about the last few days of Christina's life, and when I do I look at pictures of her smiling and laughing, the fun, full of attitude Christina, then I start to smile, laugh, and cry. But it is good. I an even starting to dream of her too, good dreams. Like I dreamed that she met her donor and went up to her and hugged and and thanked her for allowing her three more years to be with her momman and brother. I really feel like it was a little girl who saved her life. Though I don't know for sure, but in my heart that is what I sense and feel.

I am anxious to start doing something about organ donations. I want to make people aware of how important it is, and that yes it does work. Although we don't know for how long, but it DOES WORK. I found out that the hospital I work at has a chapter for the midwest transplant network, I am going to check into that. Who knows what I might be able to do.

Well I guess I need to go and update the pictures. Keep checking in, I love reading the guest book


Lori

Saturday, February 7, 2004 9:41 PM CST

Good Evening

Sorry it has been a while since I have done any type of updates.

To be honest I really don't know what it was I talked about the last time. (Guess I am getting old, and the fact that I did not look)

Work has been going good, it seems like all I do is work and sleep sometimes. But, for now it is good for me.

Last night while at work there was a young girl, about 19, in the ICU and was pronounced brain dead. I wanted so much to go and talk with the family. Not only to comfort them, but to talk about organ donation. It was very hard to stay where I was. I knew that the right people were there to talk with the family, and I was happy to hear that the family had decised to donate their child's organs. Though a fresh pain was still there for their personal lose.

The question has been in my mind lately as to how I would handle it if one of my patients died while I was at work. I am not too sure how it would be. I know for one that I would have to leave the room,I don't think that I would be able to be there.

Although there have been several families of patients who have reconginzed my name and questioned me about Christina. And then they have told me what an encouragement she had been to them and the fact that I was there working and taking care of their loved one was a strength for them. This has helped me so much.

I am beginning to feel like I don't need to know that one person whose life was changed by Christina's life. I am beginning to see so many people whose life has been touched in one way or another. I have developed life long friendships that otherwise would not exist. Some of them are with you who have been reading the last several years, right here.

I think the change came on Christina 3rd anniversary of her lung transplant. I took the boys for the first time to the cemetery and let balloons go, and I sent a rose down on her grave my hand so shook that it shocked me. But I guess it was there that it hit me taht her life was far from being in vain. Thoug short, she has touch and helped so many people. More than most of us will ever meet in a life time. For that I am thankful.

I still get enouraged when I hear stories about Christina, and how she was a strength to others and help someone else get through a hard time. I know she will keep helping others, with the memories that she has left with all of us.

Life will go on, though it seems very empty at times, but we will continue to go on, though we may not want to from time to time, I know my Sweet Christina will always be with me helping me through every step I take.

I was thinking the other day about the paths in life that we walk. Many of us choose which one we will walk down. It is like I told my boys, Josiah and Stephan. Christina never was able to make the choice, though she walked the path choosen for her with strength and courage and love. It was a path that we were choosen or privaledge to walk with her. If we have walked it like she did, then we did good. Now we have the choice as to what path we will walk down now. The one that leads to more life, or that one that lead to depression and self pity. If fo r nothing else but for the memory of Christina I want to walk the path the leads me to continue on. Her brothers want to walk the path that will continue on. Please keep praying that we keep oh the right path. Sometimes the path is dark and thin, but if we keep straight I know we will make it to the end.

I guess I have gone on long enough. Keep praying for us, and there are several in the hospital at Children's right now who are in need of prayer.

I am updating the pictures too.

Lori

Thursday, January 22, 2004 10:57 AM CST

NEW PICTURES



Good Morning

Well things here are going okay right now. Josiah was sick with a 24 hour stomach bug, but seems to be much better today, although like any child wanted to go back to bed and not to school. I think the pre-teen is kicking in with him, he is liking to sleep more than he did before. Which on Saturdays here I like it.

Stephan is doing fine. Although he is picking up an 'I don't like school' additude, so this is getting to be fun with homework, etc.

Matthais, Christina's dog is doing fine, although when it is just him and I here in the house, he is like a little child, who wants my attention the whole time. That or he thinks he needs to go outside everytime you turn around. I wonder what Christina would think of how big he is getting. He is a continualy reminder to us of her.

Last night for the first time I had a dream about her, I still don't understand it. I was wanting to stay asleep this morning to finish it, but duty called and I got up. I might tell you all about it sometime. It is still hard at times to see some of he pictures where she is so full of life, laughing and caring on like she use to do, and to think that I will never see that again to me seems so unreal.

I am enjoying being back at work, although I have to get us to the hours once again. The boys have to do some adjusting too, but for the most part things are going okay with it.

I think this week I am going to do something that I have not yet been able to do, and that is call the momument place and order Christina's stone. I want to have her picture engraved on it, so am not too sure what the cost is going to be. But, with a deep breath I will hopefully get this done tomorrow. Now that I think about it today is Thursday. (see what working nights does to you)

Okay well I guess I need to go for now, the dog is really whining for my attention. So until later.

Lori

Monday, January 19, 2004 10:50 AM CST

Good afternoon, I trust this finds everyone keeping warm. The weather here in Missouri is a cold 18 degrees.

Things are going okay. I have some what of a rough week last week, but this week so far is fine. I have started back to work at St John's and I will tell you that it does feel good to be back there working. It almost seems like I did not leave there, though it has been four years.

I am working in post cardiac surgery, and so far the nights are long, but the work is okay.

The boys are doing fine, they are 'mean'. I say that but they are just boys. I am surprised how well they do with everything. Even when I am not doing to good, I can let them know that I am struggling in my faith, and having a lot of questions, but I also let them know that I have not lost out with God, just having a hard time, and that it is okay. I think however, Matthais, our dog, misses Christina still. I know that may seem weird to say, but there are times when he will go and sit her room and just look in there. Once the boys are home it is different. But I guess he is still use to someone always being here to play with him. Like right now, I am not playing and he wants me too so he is letting me know what he wants. Maybe I just need to let him outside for a little bit, and trust me he will let me know that he is ready to come in.

Sometimes it is hard to get into writing on the web page, I am glad that I have it still going and all, if for no other reason then to share the pictures of my sweat Christina, but I want to be able to say taht she is doing well, or even to tell about a doctors appointment that she is having. but I can't do that. I know she is doing well, but I want to see her doing well. I am reading a book right now a nurse from St John's gave me and it is helping some. I guess. It is going through some of the emotions that I am feeling and it helps to see that I am not the only one with the 'whta if' questsions and the 'maybe if we did this or that' thoughts. I have a lot of them and I know that I may never have the answers in this life. but someday...

Well I guess I will go for now I have a phone call, so until later this week

Lori

Sorry to cut this short

Saturday, January 10, 2004 8:15 PM CST

Good evening, I trust this finds everyone doing well and rested from all the holiday stuff.

Things here are the McReynolds' house are okay. Don't know when they will be 'perfect' but it is okay. And for that I am thankful for.

I have found that my letter righting has helped me so much, when I go back nd read what it is that we "talked" about I feel as if she is right here with me. And the believe taht a part of here is still with me, inside, a part of her that will never leave me. I don't think there is a day or even an hour that does not go by that something does not happen that reminds me and the boys of somthing Christina would have done, or something that she did while with us. It is helpful to talk about her, and to remember of all the things she did and her sweet smile and the sparkel in her eyes.

The boys are doing amazing. I think part of it that has helped them is the fact that seperation they had from her so much this year while we were in St Louis. And that I had talked with them in detail as to what was happening with her body and that she was not going to be with us much longer. I think they totally understood what was happening. I am so thankful that we have a relationship, even at their young ages, that we can talk about 'deep' issues. Also, they were not strangers to death. They knew that Christina would be with their Daddy, and in a little way I think that they envied her some for that.

I will be right back, Stephan wants to watch Christina's "Lizzie McGuires Movie" He likes the guy that sings in it. At first he was not sure if he should like it cause it is a 'chick flick' I told him that it was totally fine for him to watch it and even listen to the CD.

Oh, I am starting back to work on Monday. It is only PRN fo rnow, but they think I should be able to get enough hours to make it full time. I will be working at St John's hospital again. I will be working between 3E and 7E which are cardiac floors, 3 is post cardiac surgery and 7 is 'general cardiac'. I am looking forward to starting back up there again. I went and got some new uniforms, and when I was looking at the scrubs I picked out prints that reminded me of Christina, one top particular has Boyd looking bears on it dressed like angels. Stephan told me that I need to wear that one first. :-)

In the fall I hope to start back to school. On a bracelet that a friend made for her, I have her nurse's hat charm on it. I wear it all the time and never take it off. That is my little kick in the bottom to keep going, and to make sure I get my RN degree, even if it is only an Associates. I may at some point go for my BSN, but for now and at my age this is a good step. I have already talked with the nursing program director at the college I was attending before Christina got real sick. She told me that usually you only have a year to reapply for the program, but because of all that happend I just need to write a letter to them and tell them of my wishes to be back in the program and then start in January of 2005. All I have to take this fall will be math and a humanity, gross. ;-)

Well I guess I need to get the pictures loaded so I will go for now. I will try to do another update later this week. Thanks for you constent support and prayers.

Lori

Thursday, January 1, 2004 11:46 PM CST

Happy New Year

This is a strange New Year for me. The last two we were getting ready to head to St Louis for check ups.

Things hear are about same, nothing new really is happening. You know how most parents wish for those quiet times, when no kids are around. Well don't wish anymore. It is a horrible feeling when the boys are gone and the house is empty but for me and the dog, and at times he is with grandpa too. I can't keep the boys home always, but there are times when I want to hold them tight and not let them go or do anything without me there. It is not fair to them, they have a life too. I just don't ever wish to be childless, not even for one minute. Now I know we all need a break now and then, but charish each minute you have with your children, tomorrow holds no promises.

Today we watched some videos of the past, one was Stephan's birthday party, everyone, but me, was playing twister, and Christina was having so much fun. But even as I watched it I saw times when she was short of breath and then times when the activity would send her off coughing. She always pounded on her chest when she coughed, and I never understood that.

Then we watch one tape from Christmas of 97, she was so cute and had the cutest little voice. She was so excited over a "Big" tea set she received, she was ready to open it right then. One things that was funny was my inlaws had gotten me some pans, and Christina told me who they were from and that they were for me. Then a few minutes later she told me that she got them for me. LOL. She also was excited on Christmas eve of that year when she recieve "My Little Kitty". She held it like a little baby, and when she was singing "Away In A Manger" she was rocking it like a baby, and then she opened some baby doll clothes.

She was always so happy and really never let anything get to her. The Boys and I were talking tonight about that, how over the last several years, when things were not going too well, Christina hardely ever complained. I think the first time she really did was when she was started on the Bi-Pap machine in September. She was mad at the world for that, but soon realized that it helped her and she really liked it. Then a couple times after that when changes were made, like when we started Helose (sp?) oxygen and the continuous morphine drip. But soon, like within a few hours she was once again glad for the changes.

I have come up with a way to help me when I get really down and missing my little girl. I have started writing letters to her. Now I know that some people might think this strang, and guess what I really don't care. I has helped me put my feelings in order. I was able to 'tell' her about the last week of her life, about how unfair I think all of this is, and even just the day to day things that are going on. I may print them all out someday, and then I might even write for the world to read about her and put some of them in there. Some where and some time, there will be something great coming out of all of this. I am just waiting to see it.

It has also helped me to keep this web page going. How long I don't know, maybe for a long while, never know.

Well I know this is short, but it is getting late and I have a few other online things to do. Please keep signing the guess book to let me know you stopped by. And keep watching for picture changes.

Have a Great New Year. HUG YOUR KIDS

Lori

Saturday, December 27, 2003 6:36 PM CST

Good evening and I trust this finds you all recoving from the holidays.

Things here are going 'ok'. Right now I am sitting at the desk with Josiah's new hamster that is only a couple of weeks old, a birthday present he bought with some money he received. Oh what joy. :-)

It is hard to believe that it has been one month and two days since Christina went to be with her Daddy and Jesus. Sometimes it seems like a life time ago. I have all kinds of pictures of her sitting on my desk some of them were taken just a couple weeks before she left us. She was looking good in those pictures. I am so glad I have them. She looks so alive and ready for mischief. I can't even begin to explain the feeling that I feel when it hits me that she is never coming back here. I have 'ok' days and then there are days when I just want to stay in my room and not come out. If it were not for the boys that is just what I might do.

I am trying to spend extra time with the boys, like one day I had just Stephan and then like to day I had Josiah and we went and got the hamster. I feel like in a way I am getting to know them all over again and they me.

Christmas was Ok, Matt came over and he and I went to the cemetry and let the balloon go, although it got a way from me before I was ready and got stuck in some trees. A few minutes later we looked for it and it was gone. I told Matt that Christina had her daddy reach down and loosen it from the trees. There was a little Christmas tree sitting out there and we took the ordaments off and made a heart on her grave. And there is an Angel sitting there too. It really helped having Matt there with me.

You know it is strang how the Lord places certain people into our lives at the right time. I don't know how I would be able to handle all of this without Matt, he has been a GREAT blessing to me. When I am having a hard time, he helps to bring things back into focus for me. Thanks Matt.

I ahve places some pictures in the album, not sure what they are, a friend placed over two hundred on a disk for me so I will be updating the pictures every couple of days, and then you can see Christina, and what a little angel she was long before now. I may not update the journel but will try to remember to change at least the color so you will know to check out the photos.

Well I know this may not make a lot of sense right now, but that seems to be my normal. enjoy the photos, and look for more

God Bless

Lori

Saturday, December 20, 2003 7:04 PM CST

Greetings from our house to yours


Well we returned on Thursday from St Louis, our final trip. We held Christina's memorial service on Weds. afternoon. I was not to sure how I would feel going back into Children's Hospital, but I was surprised to find it almost a comfort. Going down Kingshighway, however, was a little rough, I had knots in my stomach right until we pulled into the parking garage.

A lot of people shared things about Christina, things that made us all smile, and things that we will always remember. She was and still is an amazing little girl. At times it just does not seem real that she is gone, I look at pictures where she is so full of life, that part of my mind denigns the fact that she is no longer here with me. When her brothers are away fromt he house everything seems extra quiet, although I am getting a little use to it, the loneliness I don't know if it will every go away.

I do have a BIG favore to ask of everyone who reads this site. I know this may seem strange and to some weird, but I would like for each of you, whether you knew Christina only from this site, or in person, if you would write how she has touched your life,a nd maybe something in her story had changed your life, whether great or small. This is something that I need to know. I can't even begin to explain the reasoning behind this request, but if you all could do that, either email me or write it in the guest book.

I hpe to start writing about Christina's life, whether I ever do anything with what I write or not, we will see. But I want to have her amazing story in print. Who knows maybe when I am old, it will bring comfort to me. I know it will bring joy just to write about such an amazing person. She lived only 10 years, 7 months and 11 days, but she to me has accomplish more than some who have lives over 100 years.

Keep us in your prayers as the Christmas season approaches. On Christmas day I plan on going out to the cemetry, something I have yet been able to do, and send her a special balloon, something that I promised her I would do. If anyone else wants to share in this you are more than welcomed. I told her a long time ago that she needs to be watching for balloons to be coming to her, for I plan on sending them to her often.

Thanks again for keeping up with this site, I am not sure how long I will keep it going, but for now I will try to do an update weekly to let all know how things are going here in the McReynolds household.

Thanks to everyone for being a friend, whether we have ever met or not.

MERRY CHRISTMAS, FROM THE MCREYNOLDS, LORI, JOSIAH, STEPHAN AND OUR SPECIAL ANGEL CHRISTINA

Wednesday, December 10, 2003 1:28 AM CST

MY FIRST CHRISTMAS WITH JESUS

I see the coutless Christmas trees around the world below
With tiny lights like Heaven's stars reflecting ont he snow.
The sight is so spectacular, please wipe away that tear.
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that all hold so dear,
but the sounds of music can't compare with the
Christmas choir up here.
I have no word to tell you the joy their voices bring.
For it is beyond description to hear the angels sing.
I know how much you miss me, I see the pain inside your heart,
But I am not so far away, we really aren't apart.
So be happy for me dear ones, you know I hold you dear,
And be glad I'm spending Christmas with Jesus Christ this year.

I sent you each a special gift from my heavenly home above,
I sent you each a memory of my undying love,
After all, love is a gift more precious than pure gold.
It was always the most important in the stories Jesus told.
Please love and keep each other as my father said to do,
For I can't count the blessings or love He has for each of you.

So have a Merry Christmas and wipe away that tear.
Remember I'm spending Christmas with Jesus Christ this year.

(this was a poem sent in and place ont he back of Christina's service programs)

Good evening or morning as the fact maybe.

Things here in Neosho are going OK. Yesterday the boys and I went to St Louis for the Lung Transplant Christmas Party and to visit with some wonderful friends from Chicago.

I was doing okay for the most part on the trip up there and getting a little excited about seeing some people that I had not seen in about a year. We even stopped at Crackel Barrel to eat lunch, the same place Christina and I always had to stop and look at all the neat stuff there. Josiah and Stephan both thought it cool that it was Christina's favorate place to stop.

But, when it came time to leave for the Magic House and the Party, the closer we got the more I actually felt like driving home. My stomach was feeling a mess. But, if it were not for the boys that is just what I would have done.

It all turned out quite well. It was indeed good to see everyone and to visit with them. Josiah and Stephan had the time of their life, they played and played, I had to make them sit down for a little bit and eat and to wait until "Santa" gave them their gifts, they were so ready to get back to what they were doing.

The hard part of it all was there were several people there who had not heard what had happens two weeks ago yesterday. They asked how Christina was doing and where was she. My heart went to my stomach, I was not sure how to answer. One person I told she was with her Daddy and they thought that her Daddy was there at the party too. Then I had to tell them what I ment. It was very hard to do that. I think it was good for me, but hard non the less.

We were going to have Christina's Memorial Service yesterday also, but that had changed and we will be making the trip back to St Louis for the last time next Weds. Going to the Magic House was one thing, for She loved to go there and never grew tierd of it. But going back to the Hospital where she had spent so much of her time, especially over this last year, that will be very hard. I know it will be part of a closure for me. How much I am not too sure. I have not been able to even go to the cemetary yet. Just the tought that my little girl is there, a place that she should not be, I don't know when if ever I will be able to do that.

There are times when it all seems like a dream and things will go back to what we knew as normal. I know it will never happen and that we as a smaller family will have to find what is a new normal for us. It will take time I know, but the way is very hard to walk.

One thing I did do, was redo Christina's room for Josiah as an early birthday present for him. I had a friend over Friday while I cleaned it and went through Christina's stuff. Some parts were hard and others brought laughter. Later that afternoon I started working on the walls. By the next morning around 10 I was finished with it all. I did leave a spot behind the door with a pink daisy on a blue background and the paint below the border is in yellow and orange. Both Josiah and I agree to this. He said that it will make him feel as if she was still with him.

Anyway by Saturday night I had it totally decorated and ready. On Sunday afternoon, with several close friends here, we just out of the blue started singing "happy birthday" to Josiah, and then I asked him if he wanted his birthday present early, and of course what child would say no. I opened the door to the room and he walked in, the look on his face is one I will NEVER forget. It was in total shock and just could not take it all in. He later confessed when I questioned him, if he wanted to cry, that yes he did real bad, but because people were there he would not. I know he will charish the room. He said that it is Christina's and His room. I honestly believe he will always look at it as so. It did my heart good to see the results on the room, but more than that to see the joy in Josiah's eyes, something that I had not seen in a while. He even has his Daddy's desk in there that Richard made while in High School. :-)

I ask that you all keep praying for us. Especially next week, on Weds, the 17th to be excite. For those of you in the St Louis area, the Memorial will be at 1:30 on the 3rd floor at St Louis Children's Hospital. We will also be doing a group memorial later that even. This will be with other families who have lost their child too. Thanks so much again for all your support.

Lori

ps if there are mistakes in this it is because I am too sleepy to proof read, so over look them all, thanks

Saturday, November 29, 2003 10:22 PM CST

Good evening

I don't know where to start in this update. I guess first of all I want to thank all of you for your wonderful support and prayers for Christina and our family over the past few years. It has been a blessing and strength to know how many people have prayed for Christina. She has received the fullest of miracles.

I am not sure how much I will type during this update, I guess it will all depend on how I do during it.

I want to start by saying Christina went to her Heavenly Father and her Earthly Father peacifully. She went to sleep on Sunday around 6:00 am and opened her eyes only moments before she was the arms of Jesus.

She became ill on Friday morning with a temp of 101.5 and was taken to Dr. Wheelers office. He gave her a breathing treatment to see if that would help her lungs sound some what better. Then he said he was going to admitted her in the hospital. I told him okay, but that she would need a pass out on Monday evening for her Christmas party, after all he was going to be there and several of her nurses too. He really did not say much then. When we were waiting for the order to take with us, I questioned him about his gut feelings, and he told me he was going to call his mother, he was planning on going out of town to visit her. Right then I knew in my heart what was happening.

Christina was doing fair on Friday afternoon, though sleepy and everyone knew what was happening. By Saturday however, she was sleeping more and more, and things were not getting better. She had a room plus full of visitors, and several came to decorate her room with the cards she received and someone even brought a Christmas tree into the room, and decorated it. She woke up on and off through out the day, though I am not sure how much she was taking in. Her best friend Calah brought her the Barbie Swan Lake video and Christina opened it with some help and smiled big, we put it in to play, but she fell asleep some more, and when she was awake she was having a hard time focusing her eyes, if one looked into them they had a glassy, almost distant look to them.

As the even came she grew worse, we were not sure if she would even make it through Saturday night. She did, though she did not have a peaceful night, she had some strange dreams and was not making sence when she was talking. By about 5 on Sunday morning she awoken fighting for air, and wanting someone to rub her back, after a bolic of morphine she relaxed and went back to sleep, and she did not wake up at all on Sunday.

Right up until the end Christina fought, we would watch her oxygen levels drop into the 20%s and then they would come back up in the 70%s. Her heart was beating strong. Dr. Wheeler was surprised when he came in on Monday morning and watched her numbers, and said that after all this was Christina, she never did things the way that was 'normal'.

Matt Baker, Christina's favorite nurse was there with her most of the time, and he even spent Sunday night with us and arranged her room so that we could have two beds side by side and a cot at the foot, and the recliner where he spent the night. I was able to sleep right next to her holding her hand all night long. He left the hospital aomtime between 6 and 6:30ish to go home for a little bit. and the only ones there were her Nanna Mary, Mary's daughter Eva and myself, the same who were there for her birth, (minus a friend Shelia). It was in the presents of us three that she slipped away into eternity at 9:10 Monday morning. Several people had voiced "if only I didn't leave, or stop for this" I told them no, Christina always did things her way, and anyone who knew her would agree. I believe she held on as long as she did until only us three were there.

I have a great emptiness inside me, at times it is numb and at other times it takes my breath away and I have to stop and take a deep breath. There is not a pain or feeling to compare what this feeling is like. Only if you have walked this road will you ever know or understand.

My house is quieter now, the boys have spent some time with Grandpa, some time together with him that I truely feel is very important for them as well as for Grandpa. When they are all gone and the friends are gone, the emptiness seems to grow and grow, it engulfs you, almost like it has arms and it wraps them around you.

Life will go on for us. The pain will always be there, I don't think it will go away, it may at times seem lighter, but then it comes back like a knife.

I was worried about how the boys would take it. Stephan cried, and misses his sister, but he knows where she is, and has even talked about what she might be doing. Josiah was the quiet one, he even wanted to sleep in her room to feel close to her. On Weds evening after everyone was gone from the house, he questioned me if it was like a burden had been lifted. I told him yes, but it was one I was willing to carry again. I told him it was alright to feel that way, we have each other and will will lean on each other. They needed me and I needed them too. I told both of the boys that we were still a family. Stephan then thought and spoke that we were a family of five, but now we are a family of three. I told him he was right, but that we three will stand strong and go one, hold each one up.

The days are long and the nights are short, but life will go on. Christina is having all the tea parties with her daddy she wants, and I am sure by now she has invited several more friends she knows that were waiting for her. I am sure by now she has asked Moses how did the bush catch on fire and was ruined, or asked Noah's wife what was it like living on an ark with all the animals. She is free from pain, free from pokes from surgeries, from all the fears and concerns that no 10 yr old need have. She is able to run and play like she has never done before. I will miss her, but I am so happy for her at the same time. My little angel will always be with me. Her ways will always be close to my heart. Like her little "whatevers" or the way she would roll her eyes at someone when she thought they were being crazy. She is gone, but will never be forgotten.

There are several newspaper articles that have been written about her over the last couple of weeks. If you want to read them, you can go to www.neoshodailynews.com or www.joplinglobe.com, in the archive type in christina and the dates of the 17th through today.

I will try to update some more laters. I want to tell you about her service and other things about her. but that is about all for now. Please keep praying for us. We need it.

Thanks for all your love and support

Lori

Monday, November 24, 2003 10:09 AM CST

Thank you all for your prayers.
Christina returned to the Lord this morning at 9:10am.
Please continue to pray for Lori and the rest of the family.
God bless the children.

Services for Christina will be as follows:


Visitation will be held at Clarks Funeral Home 312 S. Wood St. Neosho MO
starting at 6 pm
Services will be held at Christina's church at Calvary Holiness Church in Neosho, MO

Sunday, November 23, 2003 3:47 PM CST

I am updating this page for Lori.
As many of you know, Christina has had a long struggle over the past few months. We ask that you continue your prayers for Christina, Lori and the boys.
Christina is currently at St. John's in Joplin. Chrsitina is very near to the end of her struggle with her earthly life and will soon be home with the Lord. Hours tick by and when we think the end is here, but she fights back and continues on. Christina has been mostly unresponsive since yesterday afternoon. Once and a while she will open her eyes and look around and then go right back to sleep. Lori, Mary and other family members keep a constant vigil at her bedside. Christina is slowly crossing from our world to the next where she will be with her father. All of us in Pediatrics love and cherish Christina and every one of us are blessed to have known her and the family. There is no greater love than what I have seen in this family. We are all blessed to have been a part of Christina's life. Lori gave me free reign to update this page with anything that I want, but I feel it is best said that Christina is walking the path with our Lord, hand in hand, shedding the confines of this life. Pray for her and the family. Your support and prayers are very much appreciated. God bless us all.

Sunday, November 16, 2003 11:57 PM CST

Good evening

It looks like it has been right at a week since I last updated, I actually have not even been on the computer that much this week.

Let me give a run down as to what has been going on here in our house hold.

Tuesday Christina wakes up with a 100.2 temp, and I call Doctor Wheeler and he wants to see her in his office. So we go there before physical therapy. Her temp did start coming down, thank God. I guess it was from the air trapping and what have you, she had gotten up that morning and took the bi-pap off, and went to the rest room and then to the couch and her oxygen level went from 94o 76she was without the O2 for about 10 minutes or so. Then we went to physical therapy, though by time we got there is really did now want to do anything and that was fine since it was about lunch time. :-) So we visited for a while and then went to eat lunch ourselves. We have to be careful that she does not get an infection, if she does then she is in the hospital with antibodics and all that.

Christina is still the little social butterfly she has been since birth. She wanted to have someone go to lunch with us, so she called her most favorite nurse to come and meet us at McDonalds, it was kind of funny because when he heard her voice he asked her where she was and told her he would meet her there in a little bit.

Weds was a day spent at home for the most part, things were about the same nothing new.

On Thursday she went to Dr. Wheelers for her labs and we talk about her needing more Morphine and wanting to lower the time she is on the TPN. So we decided that she out be on the TPN for only 10 hours compared to the 16 hours she was. To her she is weening herself off of it. However; she is still getting the same total amount only at a faster rate. We also started her on a 24/7 morphine drip with a little button for her to push once an hour for breakthrough pain.

It took here a little bit to get use to it, and I had to explain that her nervous system was use to getting 2-4 mgs within 15 minutes and now she was only getting up to 1mg over an hour, but that once her body realized that she was going to keep getting the drug she will get use to it. So far she is doing good on it. I am glad we did this.

Then on Thursday she is to get her IVIG, I pray things go okay. Not like last month.

Friday she went to Precious Moments with some friends and without mommy, (can you believe that) she had a good time and enjoyed herself. Mommy went and met a friend for dinner. It was nice to get out for a little bit to 'relax'.

(When I learn to totally relax I will let you all know).

So this week we will be getting the house clean and ready for next Monday when she is having her Christmas party, I don't know how all the people are going to fit into my house, but it will be fun trying. She is so looking forward to it.

I also talked with her about going to the St Louis Children's Lung Transplant part in about 3 weeks, she told me today that as long as a nurse is going then yes she wants to go. So we will see.

Well it is late and I am needing to get some much needed rest. She has been de-sating during the night some, last night was bad, she would stay in the low 90and then get to the lower 80s and then go back up. It seemed that once I was good and asleep the alarm on the pulse ox would go off, so she is on 3.5 liters right now and we will see how she does, last night once I turned it up she did better.

Keep signing the guest book and please keep praying

Lori

Oh if you want to send her a 'special' Christmas card please feel free to do so.

Monday, November 10, 2003 0:11 AM CST

Hello from Washington Ave. Yes we have finally made it home. We actually got here around 2:30 yesterday (Saturday) afternoon. And Christina is okay with being home :)

We have had some very serious talks between me and her and between me, her and Dr. Wheeler. One of the things was what she wanted to do if she was to code while in the hospital, and she said she did not want to be on the vent. So that was setteled. She became a DNR, that was one of the hardest things for me to do. Even for Dr. Wheeler I am sure.

Another things was we talked about her TPN. The question was how long would we keep it going. She told us that she was tired of feeling crummy when her labs are all out of wack, and it seems to be that way more than not. It is getting harder to balance everything in her system. The TPN can only do so much, and sometimes it can make things worse. We explained to her that if we stopped it she will still get IV fluids (Dextrose) and her meds. That she can still eat (though it does not stay down). And then we will see. But that was going to be her call as to when we stop it. At first I thought she was ready right then, when she said something like, "if the TPN can make me feel yucky like I was the other day, then yes. As long as I get fluids and can eat." She is so strong. I asked her if she knew what would happen if we did stop it and she assured me that she did, although she did not want to say it. And that was totally fine with me.

She was also told that if she was to get another line infection the TPN would be stopped, and Dr. Wheeler will treat it, although very cautiously. He is afraid and rightly so that to treat a line infections like it would need to be could cause her total renal failure. Or that the infection will go crazy in her body.

There is no easy answer to anything. I did question about how long would we have if we stopped the TPN and was told we would be talking weeks. This I did not tell Christina. I don't know what she is going to do, but when she is tierd, I promised her a while back that I would not make her fight. She has fought for 10.5 years, and now if she is wore out then it was okay.

She told me that she wanted Christmas, and of course I can't promise her tomorrow. But, we will be doing Christmas in a couple weeks here at home. I am going to get some invites made up for people she would like to spend time with. Maybe make it a potluck type thing. She also wanted to celebrate Josiah's (her older brother)birthday, which is on Christmas and I told that we could do that too.

I mentioned to her about getting an evergreen tree and decorating it with popcorn, etc and then afterward we can plant it out in the yard and in the spring I will plant flowers around it. She was so excited about doing something like that. It will be her tree. And each year the boys and I will decorated it in the same manner for the birds, squirrel and rabbits to eat off of.

I know some might think I am totally wrong in letting Christina make the choice about the TPN and me not staying with it no matter what she wants. But, she is totally aware of what is going on. She told a friend of hers not too long ago that she was ready to go to Heaven and to be with her Daddy, but she would miss everyone her. So if she is talking comfortable like that with her friend I know she is ready. Though it is still hard to talk about sometimes, and we both cry. We made an agreement with each other that we will not say she is dying but "GOING HOME, FROM HOME"

I feel like I am a mess. I still have questions as to why God is doing this. I feel like He is being so selfish. I don't know. I am trying not to loss faith, but I think I am as low as low can go. I have such a heaviness inside of me that nothing seems to lift. Once in a while is feels a little lighter, but then it ways like a ton of bricks. It is so hard to explain. I feel horrible when I get on to her for something that she can control, but then I know I can't just let her do. I have to stay mom and be consistent with life as she knows it.

Keep praying and please pray that God will help me through this DARK and HORRIBLE valley.

Also, keep praying for several kids at Children's we know who are in the hospital right now with battles of their own, some greater than others. But still all need prayer, they are : PHILIP, REBECKA, KAYCEY, WALKER and MICHEAL

Thanks

Lori

Thursday, November 6, 2003 11:51 AM CST

Good Afternoon

Well the day is finally here we are going to get to go 'home' to St. John's. I still wish she was ready to go home-home, but hopefully she will be ready in a couple of days when she sees that she is going to be okay.

I was able to vent some more yesterday with one of the nurses on the floor. It really helped me understand things a little better. For one, and I hope to be able to explain it to Christina. There is a huge possibility that she will not die by surprise. That she will more than likely go into respiritory destress and then ... But it will not be a surprise. Also, I understand more about the pain she is feeling. With the disease the lungs are staying expained and thus her chest is not relaxing, and the ribs are not relaxing thus the constant pressures and the pain.

I am not sure has to what time we will get out of here, but when we do and when we get home, I will just take it day by day. And try to relax and breath.

I may not be updating until Monday but if I get a chance I will do so before. Keep praying. My faith may be at the low end, but I know there is someone out there with the right amount that we need too get us through this, what ever happens.

Oh pray for a good friend here in SL, his name is Philip, he was txed 10 yrs ago with lungs and they are doing great, however three months ago he had a kidney tx, and was just this week dx with cancer. It is throughout his body, but not in the lungs or heart yet. It seems that the four people who received organs from this donar all ended up with cancer, two have died. Keep them in your prayers too.

And one last thing, if you read this (anyone at home) please do not let the boys know. We are hoping to kind of surprise them at the hospital this evening. Thanks

Lori

Tuesday, November 4, 2003 5:00 PM CST

God afternoon

Well not much has changed here. I have not really seen any of the doctors today, the fellow has coe by a couple of times, but that is about all.

Christina's tachro level is down some and will hold tonights dose as well, however the BUN and creatinine is still going up. I am not sure what all is going on and what the game plan is.

Sometimes when you are in the hospital so much it feels like they only stop in to say hi. But then when someone is like Christina I really don't know what they will do.

I am so ready to go home and stay there for a while. I know she is bored, at least today she is. She is feeling pretty good right now. I am surprised as to how good she is feeling considering she really did not sleep well last night. I can't even count the number of times that I woke up to see her sitting up holding her chest and not wanting to lay back in the bed.

There are so many things I want to know, but no one has answers, and I guess they really can't give answers to some of those questions. Sometimes I get so mad at this life it is so unfair to all these kids. They never asked for the problems they are going through. I was talking with another mom yesterday and she said that when we became mom's we did not sign up for all of this. I told her it must have been in the fine print that we did not read. It comes with the job that we have as a mom, and it is one that we would not trade, well let me rephrase that, we would trade it in a heart beat for our child to be healthy and to be able to live a life that is full and long. BUT, for some reason God did not see it to be that way.

I want at some points to get bitter and angry at God for allowing Christina to go through all she is going through for the pain and suffering. For the fears of an uncertain tomorrow. Her biggest fear right now is dying by surprise. I think if she knew when that would happen she would not worry about what comes next. She is scared of more things now, since her last surgery back in June than every before. I sometimes wonder if she did not experience something during surgery. She use to be brave and walk back to the OR and never need anything to help her relax, but now she almost wants to be alseep before she goes back there, even for something as 'simple' as getting a new Broviac. She has been through so much, I just wish she could be 'normal' for a little while, with no pain, no fears, and full of life, wanting to run and play and able to do just that. I want to be able to get her a new bike that she wants and for her to be able to ride it with no worries.

I don't regret doing the transplant, God only knows how happy I am that we did it. Who knows what her future would have been without it. But there are times.........I question if I did the right thing. The other day, I was made at God and told Him that I thought Him unfair that he already has her Daddy and asked why did He need to have her too. I thought it unfair to me and to her brothers. Why should they have to go through losing their sister. Why should I have to lose my little girl. There are so many questions, but the answers are not there. Will I ever know this side of Heaven?

Our future is so unsure right now I don't even want to make plans for the holiday season, I know I must, for her and her brothers. But, what will this month or even next month hold for us. I feel like I am borrowing tomorrow sorrows for today or something. That or I just need to vent some of my fears.

Well I guess I downloaded enough for now. Sorry for letting my guard down some.

I will try to update some more later when I have an answer to what we are going to do.

Until then

Just Me

Monday, November 3, 2003 1:33 PM CST

Day 19

Well this is Monday morning the day we were to go home, well to St. John's. And as you guessed we are not leaving today.

Christina'a labs came back this morning all crazy. Her BUN was like 77, the glugose was 280, her tachro was I think like 29 and some other things were too high and some too low. So we will see what the next step is.

She did not have a good night last night either. She was up with a lot of chest pains and some coughing which led to vomiting.

We will take it day by day and see what tomorrow holds. I will update later this afternoonor evening when I know more of what we are oging to be doing. So until then

Me :-(

Saturday, November 1, 2003 11:30 PM CST

Day 17

Hello once again from St Louis and SLCH.

Well today Christina's brothers and Aunt and Uncle came up. They got here about 10ish.

Christina received a pass to go out of the hospital for the day. She was looking forward to going to the Science Center with everyone. One thing that made us all kind of laugh, was when she was told hse could stay out until 7, but that I was not taking anything with me for pain, she said well I will be back before 7 that is for sure. And she ment it too.

She did real well at the Science Center, she only had a couple 'spells' of pain, and knowing that there was nothing that I could give her she did not complain about it too much, there was one point where she had her legs up in the chair and was turned almost side ways and holding her chest, she went to sleep.

Now for the exciting part. We went and saw the IMAX movie about Lewis and Clark, and right when it was over the fire alarms went off, and we had to vacated the Science Center. Now remember Christina is in a chair with oxygen. We were on the third floor, so I asked one of the workers what we should do cause there was no way she would be able to walk three flights of stairs. We took the elevator, I told him to let us off at two and we will walk across to the Forest Park entrance where we parked, he told us that we had to go to one and exit through the front. I informed him that she was on oxygen and that her tank was almost to the red, meaning we would be needing the other tank in the van. He talked with one of the security ladies, who informed me that I should not have left without enough oxygen, I then informed her I didn't, but neither were we expecting not to be able to get to the van to exchange the tanks. Eventually she allowed us back upstairs by the elevator, after realizing I was not going to back down and we went to the van and all was well.

We did learn later by the news that there indeed was a fire at the Science Center and it was right above the IMAX theater where we were. It was, I am guessing on the roof, and had not gotten into the building before we left. It was hard for the fire fighters to get to it, but I guess all is okay.

When we got back to the hospital, she was indeed ready for her pain medicine and I took the boys and Brian and Tina to the hotel and we ate dinner and then I came back here, and she was still sitting up in her chair, although she was a bit cold. I noticed her blood pressure was like 90ish/40ish (I don't remember the exact numbers)but it looks better right now, it is up some. Pray that this B/P will not go lower and that nothing will keep us from going to St John's and then home. But, I still want to do what is best for her and if she is having problems, I want them taken cared of before I get her in the van and on the road.

So much for our exciting day, it has come to an end and I am going to go and get the laundry out of the dryer downstairs and then get ready to go to bed. Once again, it is nice to read the guest book entries. Today, while at the Science Center I accessed the page, and read some of them to Christina and told her how many hits she has had on the page, she could not believe it. :-)

Until next update

Lori

Friday, October 31, 2003 9:45 PM CST

DAY 16

Good evening

Well for the most part today was uneventful. Christina did dress up as a little gyspy and went 'trick or treating' with the other children here in the hospital, though not even 1/4 of a way through it she began not feeling well and wanted to go back to her room, so Becki, the new child life person finished up for her. For a while she was happy and having fun, in fact when we first got to the play room and was making everyone laugh and one of the girls yelled, "Horray the old Christina is back!"

Christina's brother, Josiah and Stephan, along with her Uncle Brian and Aunt Tina are coming up tomorrow morning and she is getting a pass to leave the hospital for several hours. We will have to watch her O2 tank to see how long she will get to be gone. We are planning on going to the Science Center. I think the boys will enjoy it.

I talked with Dr. DelaMorena this evening about what she feels Christina's prognosis was and in what time frame are we talking. Last month I questioned her and she told me that she was surprised as to how well she was doing. Well tonight was different. For the first time, she told me, "She is going to die" I know it was as hard to say as it was to hear. I mean I knew the long term outcome, but there is a part of me that keeps hoping to hear something different. And for this coming from her .....

She told me as for a time frame there was no way of telling. Would she make it through Christmas, she thought so, but that was not a promise. Could she catch a cold and then end up in the hospital and die, yes. From a pulmonary point she is stable for now though in the end stages of the BO, her kidneys are slowly declining, it is harder to maitain and balance her fluids she is and will be depended on TPN for her nuturtion. So no one knows. She told me maybe it was time for Hospice, then I told her we had started and stopped it cause they were not willing to do TPN, and I was not going to let that happen. And then we talked about a DNR, and I told her that as long as she as anywhere but here or at St John, she was to be revived. She questioned if I wanted her intubated and told her yes, until she is at the hospital, and that this was her choice. She asked me then what, that once she was on the vent, the choice of taking her off would be harder. I told her that I wanted to go by her wishes and she very clearly stated that she wanted to be here at Children's or at St John's and once she was here or there, that if Jesus wanted her then He could have her.

She agreed with me that going according to what she wished was the right thing to do. I also questioned her about know when enough is enough. I told her that as her mom I want to do everything for her to keep her her with me, but I did not want to see her suffer. When was enough enough. She assured me that I was a good mom and took very good care of Christina, and that when it was enough I would know, and no matter what choice I make it WILL be the right one.

It is scarry to think that I can just say the words when it comes to the end and it will be over. I know that her life is in God's hands and I am not saying that I am going to play God, but I have the final word as far as how much medical treatment she should receive, ex. the ventilator, yes or no.

Christina and I talked a little bit tonight about some of this. I asked her if she were to die which hospital would she like to be at, and her choice was to be here. She asked me what I thought and I told her that wherever she was more comfortable. Then we talked about who would be there. So far it is me, her brothers, her nanna and grandpa and pastor. We talked a little more, then she was finished talking about it and that and it was fine, we changed the subject and she was happy and laughing. I am so thankful for the little windows we have to talk about this, I don't know how much she realizes what she is really telling me, but it helps me so much in making choices that I have to make.

Oh, we made a slight change in our plan on going home. I am going to drive us to St. John's on Monday. We really can not justify insurance to pay for the ambulance trip home and I am not willing to pay the $1400 that it cost to go that way. I told her that she will be fine and that we will go straight to the hospital. They will be waiting for her there and everything. I am hoping that once she is home and friends come and see her she will be more comfortable and her fears subside and she will be ready to go home, home in a couple of days. Then she will get back into her routine of see Dr. Wheeler twice a week.

I know this is kind of deep tonight, but I needed to get some of it off my chest and so I could breath a little bit easier. I guess I am going to go for now. Talk with you all later. Hope your night was safe. Remember to hug you kids tight tonight, they are a precious gift.

Night

Lori

Oh I want to say a big THANKS to all of you or signing the guest book, it really does help to know that so many of you are out there praying, someone might have the faith to move the hand of God for a complete MIRACLE for Christina from the top of her head to the tip of her toes. I know HE STILL DOES MIRACLES

Thursday, October 30, 2003 8:46 AM CST

Day 15

good Moring

This wil be breif and will update more later today, Okay

Dr. DelaMorena came in the room already this morning and look Christina over, and then we talked about why she was afraid to go home. I told her that yesterday while talking with her therapist that it came out that she was afriad of dying by surprise. Dr. DelaMorena says that she does not want to dismiss these fears, in the fact that the pains she is having in her chest may be related to end stages of the lung disease. And that she may be sensing something that we are not.

So, the came plan as it stand is she is going to call and talk with Dr. Wheeler at home and arrange for Christina to be transported by ambulance to St John's Regional Medical Center at home. Christina will stay there a couple of days and then go home. I asked Christina how she felt about that and she was more comfortable with that then getting out and going to the hotel for the weekend and then in clinic on Monday.

So our target date of going home is now on Monday. If everything can get set up for that date.

I will let you all know more later on today as the day goes on if there is anything new.

Keep praying for her and all of us. THANKS SO MUCH

Lori

ps. we see a lot have viewed the page, but we would love to see who all are stopping by. TTYL

Wednesday, October 29, 2003 6:11 PM CST

day 14

Good evening

Well Christina's tach levelis still a little higher than they like it and some other labs were a bit off, but with adjustments in the TPN hopefully that will help.

She is still a bit nervous about going home, she fears something bad is going to happen to there. She has not totally voiced what it is, so we will have to do some more talking. So this is the plan. She will be discharged from the hospital on Friday and then we will stay local for the weekend and then on Monday she will be seen in clinic and then home if all looks good.

It has only been 2-weeks in the hospital and for some reason it seems a lot longer this time than all the other times. I am not sure why, but it just does.

Today is one of the thorax surgeons last day here, Dr. Mendeloff, he is moving to Dallas and will be missed here a lot. Also this is the last week for our transplant cordinator too, she is getting married and moving to Huston, TX. I am very happy for them both, but sad for us. When you are here so much you become very close with the nurses and doctors that care for our kids. I have told Debbie that we not only think of her as our cordinator but as a good friend who has been with us through a lot of hard times. I questioned the nurse practictioner on the floor, Carole, and told her that she can't leave. I told her the I would email her all my concerns and she laughed. I am serious though, but of course once we get a new cordinator I am sure we will develop a special bond, as long as she is someone personal with the kids and their families.

Well I guess that is all for right now. I will update any changes if they happen

Until later

Lori

Tuesday, October 28, 2003 11:09 PM CST

Day 13

Evening

It is late so this might be short, but then one never knows from me.

Well we still have no date on when we are going home. This morning the nurse came in and said that we might be going home tomorrow and even Cormun called to set up delivery of her home meds, etc. Then we got some of her labs back, her tachrolimus level (antirejeciton med) was too high, and we need to hold tonights and tomorrow morning dose. Also her creatinine jumped to 2 The norm high end is 0.8), and some other stuff. They also changed her TPN/Lipids again.

So I guess we will just sit and wait and see. The earlist that we will go home now will be Thursday. Christina is a little un-easy about going home for some reason. We are not sure what she is afraid of but there is something there. We tried to tell her that she was doing great at home, until the line infection but that is taken care of with the new broviac, and that she was still seeing Dr. Wheeler each week. Dr. DelaMorena had her to think about what it is that she is nervous about in going home.

I had Christina up and in the bathroom earlier and she was about to fall over with pain, weakness and shortness of breath. She did fine once she was sitting on my lab and catching her breath, her legs are getting so week from not moving around. I did make her get up and walk the hall way tonight. I know it takes a lot out of her but she needs to do it.

Oh I was told of a new study that shows using about 250 mgs of Zirthromax (sp?) three times a week, can help slow the progression of Bronchiolitis Obliterants or chronic rejections. I think we are going to start Christina on this therapy and see how she does. Right now she is stable, but if we can get more time, then I say YEAH lets do it. Who knows this just might be the answer that we have been looking for.

Well like I said it is late and I have a headache major, so now that the roommate and mother and grandmother are quiet and sleeping I think I will try and get some sleep.

Until tomorrow

Monday, October 27, 2003 5:33 PM CST

Day 12

Good afternoon/evening

Well it looks like we will be here for a little bit still.

Again this afternoon Christina spiked another temp, 101.4. So more cultures were drawn. And her Doctor is wanting to find the sorce to the chest pains. We did a chest x-ray this morning along with an EKG and both look fine. So she ordered some more labs including one that wil look at the pancreases to see what its levels are. I am not sure what they are looking for however. Sometimes it is like looking for a needled in a haystack. IT is like a waiting game when you are waiting on test results at times.

Tomorrow Make-A-Wish will be here to do a holloween party for the inpatient kids in the play room, Christina is kindof looking forward to that.

I also talked with her child-life specialist about finding something the does wishes, we did a Make-A-Wish back in 2000, however Christina really did not enjoy it for the most part, I think she was a little too little for Disney, and the fact that is was too HOT to do anything. All she remembers is that it rained and the characters were no where to be seen, and that she had to wait in a line to see Cinderella. What she would like to do is a Disney Cruise, but I think that is going to far, or to meet Hilery Duff or Raven, but she would like a Shopping spree real good, she wants to get a go-cart, but I stopped that and told her that I was not going to let it in the garage and my van in the drive way and I was not going to play referee with her and the boys about it. Then she said she really, really would like a lap top computer or a portable tv with a dvd player. Nothing small. I asked if I would be about to use the computer too, and was told only have she was done with it. (ouch)

Well I guess that is about all there is right now. I hope they find the source of the fevers and the pain soon. She feels horrible when she hurts.

I may add on to this later this evening if I find anything out. So until then or tomorrow

Lori

Sunday, October 26, 2003 5:40 PM CST

Day 11

Good afternoon.

Boy did we have a long night. Not only did we get an extra hour, but we were busy too. And then we have a room mate who forgot aboutthe change and was up and moving around at 5:30, and did not even think about laying back down after they realized the change in time.

Christina spiked a 102.9 temp and her b/p was up again. So thus came the need for blood cultures. Thank God for the new broviac. However, the doc still wanted a stick too. After looking for a place to poke her, the nurse left and came back and told me that she paged the transport team to come and look and try. Christina has developed a rep with the nurses that none of them wanted to try, last week they even tried in her feet and it was a 'dry run'.

Her blood pressures are doing better today, now that she is on two anti-hypertensive meds, and the temp is finally back down, hopefully it will not go back up. It seems that if kids are going to run temps they usually do during the night.

Her vancomycin level was a bit high today too, so we are running it every 36 hours, and her sodium levels were high and a few other thing, thus a change in her TPN and Lipids again.

She is also complaining more about chest pains, I am not sure why she is doing it, but it is enough to make her cry some what. I am going to question the pains if not tonight tomorrow morning with Dr. DelaMorena. Hopefully we will have an answer to some questions. Though, with Christina we have a lot of unanswered questions.

I guess now our plan will be to go home on Tuesday. But, I am not planning on holding my breath fo rit, because as sure as I do, things change.

Well I guess that is all for right now, I will try to update again later or in the morning

So until then

Lori

Saturday, October 25, 2003 9:58 AM CDT

Good Morning on the raining day here in St. Louis.

Well Christina has a new Broviac and it is working wonderfully. She is still sore from the procedure, but other than that doing okay.

She was not feeling too well this morning, as in most mornings, but she is starting to feel better. She told me that all she wanted to do today was stay in bed and do nothing. I am hoping that that will not be the case as the day goes on. Pat one of the floor nurses came in to check an IV asked her if she was up to painting pumpkins later this afternoon with everyone. She just shrugged her shoulders.

We have the okay to be discharged tomorrow, but for some reason Christina does not want to go home tomorrow but on Monday, I have not figured that one out. Maybe she is sensing something, who knows. Anyway, Dr. DelaMorena told the on-call docs this weekend that it all depends on how she was feeling. And there was not problem with her staying through Monday. So hopefully we will be going home on Monday afternoon. We needed at least a 24 hours notice before leaving for all of her meds and stuf to be sent here for me to go home with. So, we will see come Monday.

I guess that is about all right now, oh yea her weight is down a little more thank God, hopefully the fuild will keep coming off and she will do fine, her BP is climbing again, and then it goes down, but this mornings readings were 138/102 and then 147/87 they are watching it and she is still taking bp meds.

So until later take care

Lori

Friday, October 24, 2003 9:25 AM CDT

Day 9

Good morning. It was a long night here in St Louis. Christina woke up between 1-2 with chest pains that continued for about an hour, after morphine she rested. So today she will be getting a profusion scan of her lungs just to mack sure that the clot from the broviac was not pushed into them. She is feeling fine right now though and actually talking on the phone to her "nanna".

As for the Broviac issue, well it is infusing, but not blood draw from it. Dr. Huddelston came in just a little bit ago and looked at it and worked it for a little bit and was not successful in draw back from it either, and he said he has no answer. But that she needs a new one. I was praying for this. I did not want to get home and it quit on us all together. I even voiced that to Dr. Huddelston and he agreed with me. :-) So if nothing happens and there are no emergency Christina will get a new Broviac at the end of the day, and Lord willing she will be able to go home this weekend sometime. :-)

she was to se surgrey while here this visit, but I guess we will not be unless they come up today, being it is Friday. I guess we will have to just reschedule that. I am so ready to get home, my bed is calling me (lol)

Well I guess that is all for right now I will try to update this evening when hopefully we will have a new Broviac. So until then.

ME

Thursday, October 23, 2003 2:08 PM CDT

Day 8

Good afternoon, well I hope it is for some of you.

Today Christina did her PFTs and praise God they are still holding out at 20% and 6% on there machine.

They also did the TPA to her broviac in hopes to break up the clot, however it did not work, in fact they were not even able to pull back all of the TPA and it can not be pushed through the line, so now she is NPO and we are waiting to hear what is next.

I am afraid that she will end up with an IV I her arm somewhere to get the rest of her meds. She has not finished all of her meds for today, we still lack the Vanc, her IVIG and of course her TPN, which I don't think can be given through a regular IV, but I might be wrong.

Today as been very frustrating to me, I guess I am just tierd, I did not sleep well last night, for one thing our new room-mate had the chair opened up and in a place where the door could not close, (we are in front of the nurses station) and now we have a two week old baby for a room-mate. hospital life.

Well I guess that is all for now. I will let you all know when we will have something done for sure.

Until then

ME

Tuesday, October 21, 2003 10:03 PM CDT

Day 6

Good evening: Here is another update, coming live from St Louis Children's Hospital's Room 7W 44B

Christina had an okay day. She went to the eye doctor as previously scheduled and things look ok, though her pressure are up some and they are wanting to re-check them in 3 months and then if the pressures have not come down they will start her on meds for glacoma. This is from the steriods.

Her TPN/Lipids are back on track as well as most of her other meds, her blod pressure is onthe rise (again) and tomorrow we will more than likely start her blood pressure meds back up. The thing of concern at this moment is her broviac. (This is a central IV line that is place 'permently' in her chest.) For the last couple weeks we have been having some problems with drawing labs from it, and today she had to have a poke, she was not happy about it and now has another bruise. :-( Tomorrow, I think, they are going to do a dye study on it to see where the problem is, it works fine for pushing and running her meds through but when you pull back the clot that is there closes it off. I am assuming if this is the case, she will have to have a new one, Dr. DelaMorena is going to talk with Dr. Huddelston (her surgeon) about it. We NEED to have a Broviac with all her meds etc.

Out cool as of right now is for her to be discharged this weekend on antibodics (IV) for two weeks. But, we will see. I have learned to take it day by day and not to look to far into the future, sometimes just a few days can be too far.

Christina also did physical therapy today. Tomorrow she will start walking the tread mill again. Today she had it easy, she did her stretches and weights, and then she played basketball from her chair.

Well I guess that is all for now, I will update maybe tomorrow. Until then, KEEP SIGNING THE BOOK

Sunday, October 19, 2003 8:36 PM CDT

Day 4 (in hospital)

Good evening. Well not much has happened over the weekend, not that I am surprised.

I think I told you that when we got here a lot of her meds and her TPN had be put on hold, tonight we have started them back up, her labs are coming back down and so we are going to try again and see what happens.

Dr. DelaMorena and Dr. Beck will be back tomorrow and then hopefully we will have a plan as to what we will do and what has caused all of the problems.

Christina's weight is up to 87 pounds today, that is more than she has ever weighed. And her face is so swelled she just looks uncomfortable. So hopefully with starting the Lasix again she will lose some of it. I know her one time output was more than it has been all week, so I was encouraged by that.

For the most part she is being quiet and does not feel good at all. Yesterday while I was out eating dinner with some friends she called me crying and begging for me to come back to the hospital, and she was still upset when I got here, though now as bad. She told me she just wanted me cause she did not feel good. Today, after she had a shower and clean bed and was rested form it all she was talking to the nurse and feeling better, and then while she was watching GEORGE OF THE JUNGLE she put her head down on the bedside table and fell asleep, that fast. I finally laid her back and was ready to get her bipap on and what not and she told me that she was not ready to sleep all night, we will see. I will have it on her within the hour I am sure.

Well I guess that is all for now, I promised to update as often as possible. I hope to have more news tomorrow. Keep her and our little family in your prayers.

Until tomorrow

Lori

Friday, October 17, 2003 9:16 PM CDT

Hello once again

Sorry that I cut it short the other night and did not get back with you, but things happen.

I believe I mentioned that Christina was scheduled to get her IVIG yesterday. Well, she was not feeling well on Weds night and her heart rate was climbing, I watched it and her B/P and O2 levels which were both stable. When we woke up at 5:30 she had a temp of 103.2. This is high for us, but imagine on an immunospressed person. She was also complaining of moniderate to sever back pains.

I called the hospital on the way to St John's and talked with her nurses and told them what was happening. I went straight to the floor, and later to admitting. Dr. Wheeler came in and order blood work and chest xrays, etc. We started her on antibodics and of course held the IVIG. Her fever came down and by evening she was feeling better. Dr. Wheeler thought she would get out on Saturday.

Today, labs were drawn again, and with the vanc you have to watch its levels to make sure it is filtering out of the kidneys. Well it wasn't in her. Her level was higher than it would have been if the blood was taken a couple hours after she received it, not the next day.

Also, through the afternoon and evening her blood pressures were dropping, we were getting readings like 84/38. And we are still getting readings like that.

Needless to say, Dr. Wheeler called the room from his office, and told me that he just got off the phone with SL and they wanted her up there right now.

So, guess what we are here three days early, and inpatients instead of out patient.

Christina is bossy and for the most part in good spirits. I am not sure what the plans are totally yet. They did do more lab work from both of the lumens in her broviac, which by the way was growing some gram positive coccis, or a bactria, possibly a stran of staff. We will see.

The big concern is that her kidneys are starting to fail more. She is constinally thirsty ( of course what goes in comes out in vomit, we call a water fall)and her output in less than half of what it was up too. She is also looking real puffy, especially in the face, she looks like she has no chin only a dimple.

Well that is all I know right now, I will try to update throughout the week, who knows I might even get in here daily, that is if it is not being used when I get here. Oh to have a lab top, Christmas is coming, lol I might have to get me a Christmas present lolol

So until later

Lori

Thanks for stopping by, don't forget to sign the book

Wednesday, October 15, 2003 6:26 PM CDT

Hey everyone

Well I thought it was time for an update, lol

I know I have not been good in doing them, but I think about it alot.

Okay here we go. Christina is doing 'good' for her. She seems to have more 'good' times then not. Last Friday she was able to go to Pittsburg, KS and watch the PomPom Squad perform at a game. She really enjoys watching the girls. Of course we were all hoping the she would go out on the field with them, but she was not feeling that great. Over all she really enjoyed herself.

She is also enjoying her nurse that comes three times a week, she is spoiling her with crafts and stuff. She calls everyday before she comes to check and see if Christina wants some thing from Sonic or McDonalds or somewhere.

Tomorrow she is getting her IVIG at St. John's here in Joplin, so it promises to be a boring day.

Sorry I have to go for a little bit but will come right back

Lori

Monday, October 6, 2003 11:31 PM CDT

SURPRISE!!!!!

Sorry for not updating faithfully. Things here are keeping me very busy. I am hardely on the computer unless it is for doing some of the charts that we use for Christina's bi-weekly doctor appointments.

It is hard to belive that in two weeks we will be heading back to St Louis again for more check ups and evaluations. Christina for the most part is doing ok, she seems to be holding her own. I will grant her that some days are better than others, but she is okay. She is having some problems with her immunospression level again, now it is way too low, I had to draw some labs on her this weekend, one was 2 hours after I gave it to her, (this is known as her PEAK level) and then before she took it in the morning, (this is what we usually do). I hope to hear tomorrow from SL how it is doing and what the plan is. Also, her broviac seems to be a little more slugish when running some of the IV drips, they are seeming to take longer than normal. One night while running one that can run with the TPN, the TPN was backing up into the other line, no one was able to figure that out, unless there is a little hole or something in the line, and only and ultra sound can tell I guess, one more thing to look at when we get to SL>

We have started trying to get things like they were before her surgery in June, she is now working on her school work almost everyday, and she has to go to the dinning room table to do it, and if she wants a drink or what ever it has to be in the dinning room or kitchen. Even with her vomiting, she has to leave the livingroom. Though she still tries to get the boys or Grandpa to do things for her when I am not looking.

She is doing pulmonary rehab (or PT) twice a week and is now up to walking 20 minutes on the tread mill. She does 5 minutes on and then 5 off and then 5 back on, etc. She is also using wts and doing her stretches. If she gets her morphine about 30 minutes before she starts she can make it through it, with little problems.

I don't know if I told her yet or now, but I have upped her oxygen, especially at night, she is now on 3 liters at night and b/2-3 liters during the day. I have notice more times of blueing her her finger tips, espcially when she is cold. But I just give her a little help with the O2 and she pinks back up. Her lung functions are stable anywhere between 15-20nd her lower air ways are staying about 6-8 We have started her on another water pill along with her lasixs, only this is not an IV, she takes it every pm. I can't tell if it is really working or not. She is still somewhat puffy for me. But, we are monitoring her intakes and her outputs daily, and of course her wt.

When we go back to SL, we will be seeing her lung doctor, surgeon and her kidney doctor, also her eye doctor. So it will be a full week to say the least.

Sometimes I feel overwhelmed by it all and just want to run away, with all the IVs and stuff that we are doing, and then just with everyday life, trying to keep her happy, the boys happy and even the dog happy. I am at times ready to say "CALGON TAKE ME FAR, FAR AWAY". I have a nurse that comes three times a week to sit with Christina, but when she is here, either I try to catch up on house cleaning, laundry or am out running around trying to get things done that I use to take for granted like going to the grocery store. It is not an easy task to even go to Wal-Mart with her if I need to buy stuff. I have to push her and then pull the cart all at the same time. I am sure people watch and wonder what in the world I am doing. :-)

Just pray that God will give me strength, I can really tell I am needing an extra dose of it right now. I am just starting to wear out, and my smile is fading some.

Well Got to run, I will try to do another update soon, I am not going to say when though, just soon. Hopefully sooner than not.

Love ya

Lori

Tuesday, September 23, 2003 11:13 PM CDT

Good evening

Sorry for n ot getting the update done soner

Yes we are home, we got home on Friday evening. It was a rather quick discharge. We were asked if they could get everything done within the next few hours, and have home health deliver her meds and the pulseox machine tonight, would we like to get out. If they could not we would be discharged the next day. Of course I said go for it. And, even though there was a great chance that things would not work for that evenings dismissal, we left the hospital around 5.

Since we have been home, Christina is doing fine. She is very very thirsty and drinks a lot, only thing in what goes in comes out. Almost as fast as she can drink it. She is starting to get some depressed, and starting the head down and all again.

I have talked with her at great length in the fact that I can not handle her being like that, It was all I could do the last time. Hopefully things will start getting better. I did tell her that if I had to put her in the hospital for a few days, so I can have a break that I will do. I also informed her that I would not be staying up there while the boys were home from school and at night. She did not like that. I know this is hard on her, but I also know that she is a fighter. She is stronger than anyone I know.

Oh, the report from St Louis was good. Dr. DelaMorena was pleasently pleased with how Christina was doing. Over all she is holding her own and is stable. She does not expect anything acute to happen. Yes she is on the Bipap machine at night now, but it really has helped her sleep better. She was coughing all night long. We also had gotten some of the fluid off of her. Her weight is down by 2 pounds, she still has more I think, but we will see. She is still taking the Lasix daily.

Oh we are also starting up Pulmonary Rehab again. The goal is to help her get as conditioned as possible. I questioned the Dr. about whether to have the illiostomy reverse would cause more harm then good, as far as the vent issue, and she feels that when the time is right, Christina should do fine. The surgeon has a whole list of things that he wants to see before he will perform it, and a lise of test he wants to do first. The main thing is to make sure she has some gut that is working. I am still waiting to make a final dission. Christina wants it done if she will come off the vent. We will see. We have to go back in a month.

I don't know if I mentioned this or not, but Christina is the proud owner of a standard Schnauzer. Matthias John is 13 weeks old, she got him when he was only 6 wks old. He was very happy to see her when we got home. The boys love him too, and have been, well boys with him, and believe me Matthias is all male, he loves to rough house with them, but sometimes gets carried away and wants to rough house with Christina too, and she has to correct him. Today he learned to sit on command. We will see if he remembers it tomorrow. I am not one for indoor pets but,,,,,,I gave for this one. I am amazed though how easy he was to train. He has only a couple oppes a week, and sleeps through the night, now on my bed, (not too sure of that one)

Anyway that is what is going on right now. So until later

Keep signing the guess book

Lori

Wednesday, September 17, 2003 3:06 PM CDT

Good afternoon

Well don't be surprised when I say we are not out of the hospital. Christina is being Christina. She is still sleeping, she will wake up when calling her name and then look at you as if zoned and the ngo right back to sleep. Her B/P is lower than normal, but I am not sure what that is about.

The kidney doc stopped by this morning and has started her on vit D IV, and wants to keep the lasix going. She feels Christina still has a lot of water on board.

I know this is short, and sorry about that. But I am going to get back in the room with her.

Talk with you later

Oh if any wants to call the room phone number is 314-454-2985

Later

Lori

Monday, September 15, 2003 10:13 PM CDT

Good evening everyone

Well things are looking some better today. Christina has had a good day today, she is talking and smiling, although she is freezing us out of the room. They were looking for a fan for her and there is not one to be found in the hospital.

Dr. DelaMorena says we maybe looking at getting out of the hospital on Weds. Lets pray things are good enough for that.

Also, they are going to look at something other than morphine to help her with the pain. Morphine slows downs the breathing and other things.

She will alos be going home on by-pap to help her, and I am glad for that, it really seems to help.

Right now my mind is blank and I can't really think of what all there is to right, I know there is more, but......

As soon as I can remember I will add to this, SORRY

Talk with you later.

Lori

Saturday, September 13, 2003 11:35 PM CDT

Evening from St Louis

Yes we are still in St Louis

We were going to head for home Friday, when Christina spiked a temp of 101.2

We spent the day in the ER instead and then were told to stay in St Louis until Monday just to be safe. This evening she starting having chest pains, again and the morphine was not helping. She is now on 7-west. She has major fluid overload and is started on by-pap to help keep her air ways opened to help her breath and we are doing Lasix ever 6 hours.

Also she is getting a chest x-ray and a EKG tonight, she has a lot of crackling sound, the doc told her she sounded like Rice Crispy's :-)

I will update more tomorrow when I know what we are doing.

KEEP THE PRAYERS GOING

Lori

Monday, September 8, 2003 10:40 PM CDT

Hello and so sorry for not doing an update as of recent. Yes things are keeping busy around our home, and actually I am packing for St Louis and taking a small break from it all to do a quick update.

Well, like I said we are heading back to St Louis tomorrow for a few days of check ups, and maybe goodbyes. Christina is excited about going.

I HAVE MY CHRISTINA BACK!!!!! She is so happy lately and smiling and hugging and kissing and talking. Yes, I am almost surprised, but I did pray that God would let me have her back for however long He willed. She is wanting to eat and everything, even though she knows that whatever she eats will and always does come up, but she tries anyway. That is MY CHRISTINA.

I want to share a little bit of a conversation that her and I had the other night. I had asked her what she wanted me to do if something happened in route to St. Louis and we ended up in some ER, she told me that she wanted them to do whatever they needed to do to make sure she makes it to Children's Hospital. Then if GOD wanted to take her home He could from there, unless He just could not wait. But if she could choose it would be from Children's or St John's here in Joplin.

I questioned her if she was sad about all that was going on and she told me no that she was happy, and asked "wasn't I" WOW, I asked why was she happy and she told me cause she was going to see her DADDY, and again asked if I was happy. I told her yes that I was very happy that she was going to be able to be with her daddy, but that I would be sad too, cause I would miss her. She also, asked why couldn't he be here with her so she could see him. I assured her that when the time was right and Jesus wanted her to come Home that Daddy and Jesus would be right there, and she would see him with her eye. I told her that I did not know if I would see him or not, but that I would feel his presences in the room. We talked about how many days she has been alive so far, not years but days, and I told her that I would never forget those days, and that I think I will find myself stopping and saying things like, "On this day back in 93 Christina took her first bite of cereal, or on that day Christina............." She like the thought of knowing I would never forget her.

An update on her physical wellness. Her blood levels are doing some better, not at out of wack as they were thank GOD. Her pulmonary functions are dropping some more, last night they were around 13% and her lower airways were about 5%. She is now on 2 liters of oxygen all the time. Her roomair saturations was down to 80% after about 20 minutes. Now for some that may not sound like much, but Christina has never been on oxygen before in her life, not ever pre-transplant. Her sats have been lower, but she was running in the upper 90's forever after transplant. So all of this is a major change.

I asked her how she felt, she said okay, and then I asked how her body felt, and she told me that it hurt alot, her stomach was turning all the time, and it was hard to breath alot of times, and she did not like the coughing she does at times or the throwing up, especially when she eats. WOW, I was not sure what I was expecting but that made me want to cry right there, but of course I was MOM and didn't, and kept driving home.

Christina seems to have a total peace about everything that is going on. I have not kept much from her, she understands what is happening I believe. She know that God may want her soon, but then He may wait a while for her. I was talking with a friend the other day and I think, Christina was in 'morning' before. She had to deal with what was going on, and she was fighting alot of feelings I am sure about how she felt. Now she realizes that she will be happy in HEAVEN with her DADDY and Grandma and all the other people she knows there, including some other children that she has met in recent years. She was talking about on the of little boys in her school that past ways several years ago and how she was going to see him again, and then she had a shy smile, she use to like him when she was in Kindergarten or first grade. She told me she remembered at his funeral that she cried real hard.

Something she also told me that I will never forget and always charish: She had to spit and I told her that her and daddy needed to have a waterseed spitting contest, and knowing my I will be sitting outside one afternoon and a seed will come from nowhere and hit me on the head, and I will know then that she won. She told me that she would glue a seed to a letter and send it to me, and that she was also going to send me a GOLD ROSE, in a CRYSTAL VASE, filled with water from the CRYSTAL SEA. And she was going to send it down to me on one of the balloons tha I send her.

I am so thankful that we are able to have these talks, I truely think it is a gift from GOD to me, on that I will never forget. I have a peace within me right now, that I can not explain. When I think of Christina running and playing with all her friends in Heaven and her Daddy and Grandmas sitting there watching, my heart smiles. But at the same time when I think of her room being emptied of her, or my arms not holding her my heart aches. I know God is helping all of us through this, and I know He will not leave or forsake me. Though I have questioned and pleaded with Him. I can not change His will. God's Plans are perfect, though I may not understand them and I do question them, I don't want to fight against what He wants for Christina. I don't want to be selfish for my sake and cause her to have more suffering or pain. She is my special little princess, my angel that will always be with me, maybe not always in the physical sence, but she will never leave me.

Well, sorry if I got a little emotional, but this helps me, kind of like coloring a picture, you know what you are coloring, but you are not sure of the out come until it is finished and then you look at the whole picture and see how all the colors come together to create something beautiful. I never know were I am going to end when I start typing in this journel, I see the beginning, but not the end, so I go until I am done. And then I see it is just what is on my heart and I feel like I can take a deep breath, if only for a few minutes.

Keep praying, I know God hears and is helping all of us, Josiah, Stephan, Momma, and CHRISTINA.

It is late and I still have to load the stuff into the van, at least what I can tonight.

I might not get a change to update until late Friday when we get home. I will try to check in once in a while, while at the hospital, but can't promise on updates.

Love,

Lori

Saturday, August 23, 2003 9:03 PM CDT

Good evening

I am going to try and do this again, hopefully I will be able to make more sense then I did a few hours ago.

First of all Christina is having better days lately, as for her 'depression'. She is interacting more with her brothers and other people. Part of it I believe is the fact that we have most of her meds in IV form, and she knows that when she is sick, hurting or other, we have meds that can help her. But, I have been praying to have my little Christina back, for however long God wills and I believe I have most of her back. :-)

As for her physical condition. I am still seeing a decline. Her kidneys are not functioning well, in fact we had labs drawn on Monday and her BUN was about 68 and then on Thursday it was 103. Normal is 5-18. We did more labs today. She is sleepy more so now too. She is retaining fluids even though she is on Lasix IV twice a day. Her PFTs remain the same. Though they did go up a little bit, but then they go back to her now base line.

Christina is also now wearing her oxygen 24/7's. She is having a harder time breathing, and just walking to the bathroom at times makes her so short of breath, you can imagine what walking out to the van is like. But she is still my little fighter.

Her pictures are in! I can't wait to go and see them. I think we will try to do that on Monday. The boys will be in school and Christina will have a nurse here for several hours. That will give me a little break.

On Weds. We (myself, pastor and a friend) went to the funeral home to make plans. I don't want to sound, whatever, but reality is reality. I am still hoping and praying for her MIRACLE, and if we don't ever need these plans I will be too happy. But, like I said I have been this road before and I have had to make plans when I was in no emotional state to do so. The Lord was really with me and there were several things that I was really dreading in having to do, but Praise God I did not have to do them, the funeral home will take care of it all. I just needed to tell them color, and then location. They will get back with me on what they find out. (OH FOR THOSE WHO READ THIS AND WHO PERSONALLY KNOW AND WHO SEE CHRISTINA, SHE DOES NOT KNOW I HAVE MADE THESE PLANS SO PLEASE BE SENSITIVE ENOUGH NOT TO SAY ANYTHING TO HER TO TO STARE AT HER)

There were some other things I planned on doing, but those plans will stay with me and a few close friends until later.

Also, if any of you know what it is like to get life insurance on a SPECIAL CHILD, it is impossible. And I know it cost quite a lot for her daddy's funeral, I was holding my breath on what it was going to cost. But once again the Lord came through. The funeral home is going to charge me cost for the things we need and 1/2 of their service fees. I am still shocked about that. And I PRAISE GOD for that.

Now on a better note. Christina asked me this morning how many more years until she can get her driving license. I wanted to laugh for joy, that is my Christina. She knows what the future MAY hold for her, but we have talked and she is now living each day to the fullest that she is able to live it. She may not be able to get up and go places and run and all, but she smiles and talks more now, and I know she has hope, that is so great to see.

It is also amazing to see a change in her brothers, especially Josiah, he seemed very angry at everything, the nurses, doctors and all, but I think he is starting to understand some more now, and is so willing to help Christina is whatever way he can, even if it is to empty her 'hat' after she uses the restroom, and he will come and tell me how much he dumped. Not too many 11 year old boys are willing to do that. He is an AWESOME brother to her. He has every since she was born. When he was only 15.5 months old, he knew he was to be her big brother and protector. I think part of the anger is that he can not protect her from what is happening within her body. That is something no one can do anything about. I think he might have come to realize that. It really seems to help her too. She loves it when he spends time with her, even if it is just watching a tape, or reading a book.

Well I guess that is all for now. I will update when I have something to let you all know. I hope to have her lab results on Monday, was hoping for them this afternoon, but being Saturday, who knows. I will let you all know of any changes.

THANKS TO EVERYONE WHO STOPS BY TO VISIT. AND THANKS TO ALL THE WORDS OF ENCOURAGEMENTS, IT REALLY HELPS, I get on line and will always read the guestbook, even before I check my email. It really does help know that people are praying for us, and though at time words seem like they may never be enough, for now they are a great help. THANKS SO MUCH

Love,

Lori

Saturday, August 23, 2003 2:56 PM CDT

Good Afternoon from Neosho and all of us.

Well here is a weekly update.

Good news, Christina's moods are some better, she is wanting friends over and is actually interacting with her brothers, grant it not all day long, but it is getting better.

As for what is going on with her, well.................. I can still is a decline in her in her daily. She is having a harder time breathing and wants to keep the oxygen on 24/7s now. Also her BUN level was up to 103 with Thursday labs, this is a kidney function number, normal is 5-18 and her creatinine is up too. We did labs again today and I don't know what the results are yet. And what the game plan is right now I don't know either. I guess we will wait and see how these are. They (docs) did make a change in her TPN mix though.

Last Weds we, my pastor and a close friend went and made some plans for the future, I am still praying that we do not need to use them. But, I don't want to be caught unprepared. I was there before and I don't want the overwhelming feeling again, not that I don't feel that now at times.

I have to run, sorry for stopping so quick, but I will be back later to finish

Lori

Saturday, August 23, 2003 2:56 PM CDT

Good Afternoon from Neosho and all of us.

Well here is a weekly update.

Good news, Christina's moods are some better, she is wanting friends over and is actually interacting with her brothers, grant it not all day long, but it is getting better.

As for what is going on with her, well.................. I can still is a decline in her in her daily. She is having a harder time breathing and wants to keep the oxygen on 24/7s now. Also her BUN level was up to 103 with Thursday labs, this is a kidney function number, normal is 5-18 and her creatinine is up too. We did labs again today and I don't know what the results are yet. And what the game plan is right now I don't know either. I guess we will wait and see how these are. They (docs) did make a change in her TPN mix though.

Last Weds we, my pastor and a close friend went and made some plans for the future, I am still praying that we do not need to use them. But, I don't want to be caught unprepared. I was there before and I don't want the overwhelming feeling again, not that I don't feel that now at times.

I have to run, sorry for stopping so quick, but I will be back later to finish

Lori

Wednesday, August 13, 2003 11:43 PM CDT

Just a quick up date. First, I changed the pictures in the album thought it neat to put some of the older ones on, till I get the new scanner.

Also, we are getting a hospital bed for Christina on Saturday, she will sleep better, right now she likes sleeping on the love seat in the living room, she can sleep in an upper position, thus easier to breath, and I have been sleeping on the sofa. Also, we are doing a lot of her meds now IV, this is a relief to her, and we are now adding IV morphine to help her with some of the pain she has at times.

KEEP PRAYING. PRAY FOR WISDOM THAT I NEED AND STRENGTH TO SEE ME THROUGH. I am starting to feel worn and fragile. Thanks


Hi once again

Well I thought I would do a quick update befroe I went to bed tonight.

Things here are 'moving along'. For starters, we are NOT doing HOSPICE. They refuse to allow Christina to have the TPN/Lipids, so I said no, that is all she has for her nurtrients. Also, one of the nurse's asked if they were here and I was not, what did I want them to do if her heart stopped, if I wanted them to do CPR and call 911, or nothing. I told them, yes I wanted both. When we get her to the hospital and we are there, then she will be a DNR, not until that moment. Thus, they were not willing to work with me, per say, and I was not willing to change anything.

As for how Christina is doing right now, 'ok'. She is getting weaker as the days go by, and it is very hard to watch. She has some 'good' moments in each day, though they don't last as long as I would like them too.

If I repeat anything from last time, sorry, I have read what I wrote in the last entry.

Christina is still vomiting and more and more it is old bloody stuff, if she drinks or tries to eat anything it comes right back up. She has not tried anything to eat in about a week now, though tries to drink sips and eat ice.

Tomorrow morning, or today, Christina is going to get her IVIG, and then we are talking about starting almost all of her meds IV, I am doing IV Phenagren right now, every 6 hours. It works some, but not perfect, like it did in the past, it helps her relax more and I think that makes her feel better.

Yesterday, Tuesday, we went and had pictures done, Christina looked like a little angel, she picked out a dress and it is a little brides dress, I was kindof surprised when she choose that one. Anyway, she had her hair all up and in curls, and had a terria (sp) on. Talk about your Cinderellas. She had them all beat. The photographer was great with her. When she had to vomit, he would just wait, and offered her some bottled water and some tissues. THANKS SCOTT, if you read this. The phots shoot really wore her out though. Just about everything does, though we are not staying home 24/7's.

I want her to be as active as she can, even if it means for me to wheel her everywhere. She seems to do better when there is something going on for the most part. Grant it there are times, when she just sits with her head down and will not look up at anyone at all. But, we have that little window each day, and if I can see it coming, you better believe I am going to use each minute of it.

Deep down you can still see my little Christina, full of fight, and not wanting to give up, but yet understanding what is going on with her body. She is the bravest little girl I know. She has taught me so much and she continues to teach me each day that I have her. I will always cherish her. She and I know that no man can say how long she will have with us. It maybe 2 days, 2 months, 2 years, or even 20 years. Only God can give life and only He can take it. But, however long we have, we want to live it full.

Keep praying for her, that she will not suffer, I see it happening each day, a little bit at a time. That is what tears at me more than anything else. Pray for her brothers too. They are trying hard to understand everything. With all the changes here in the house and with all the nurses in and out, it is hard to be a family. PRAY HARD FOR THEM. They have lost their father and now they are watching their sister. Who know what is going through there minds.

Well it is late and I need to get some laundry out of the dryer and washer, and more in. So until the next time. I can't promise. It seems more and more I have to be in the mood to really even get on the computer. I try to at least once a day to check the guest book and my emails. Thanks so much for signing, they give me a lift and when She is able I read them to her too, but tell her about all the people who have signed it and are praying for her, she usually will give a small smile. THANKS SO MUCH

God bless

Lori

Tuesday, August 5, 2003 0:11 AM CDT

Hello

Before I start with an update I wand to start out with something important. I have been told here, that I have given up. I have NOT given up. I know the God who does MIRACLES, this page would not be here without four of them. So please unless you have been in my shoes, don't tell me that I have given up. I have walked this road before, seven years and 5 months ago, I know this road too well, only it is with my child now not my husband. I don't want to sound to forward, but when I read what I did, I was very upset. If you want to talk fine I will talk with you, email me and I will give you my number. ----thanks----

With that said, here is an update on what is going on this week.

Christina and I have had several talks about what is going on with her and her body. She is not scared, and she knows everything. Now if she totally understands, I am not sure, but she knows that if we do not see the MIRACLE here she will have one in HEAVEN. She is an amazing little girl. I have not once had to bring up the topic of what is going on with her, she has always starting the talks. She told me the first thing that she is going to talk to her daddy about, and that is all about her room, how bright it is and how pretty it is. Also she wants to take a special teddy bear to Heaven with her, and I told her she could. She wants to pick out the dress that she is going to meet daddy in, I told her, she could but not right now. (I am not ready for that)

As for her health, that is the hardest thing to watch, I see a change daily with her. Right now she is retaining fluid, since Friday she has gained 3 pounds. We have given her 40 mg of Lasix, and so far no real results. Please pray that the fluid will come off. It makes it harder for her to breath and she feels terrible.

Christina is only on one liter of oxygen, but she feels like she can breath better with it, and I told her that was fine, no matter what her sats are if she wants it she can have it. However, she wants it off, while she is sitting and wake we can do that too.

The hospice nurse came out on Friday and I was surprised how comfortable I was talking with her. I think it helped that her home health nurse came too, and that she will continue to come along with hospice. We also talked about another nurse coming twice a week for four hours each day, so I can take the boys and do something, or have time to myself. I don't know what I will do for four hours. But, we will see. I do know that I have to take care of myself too.

It was so nice of Carri, one of the nurses from St Louis Children's hospital to stop by yesterday (Sunday) to visit with Christina, and to bring her new puppy by. Christina really enjoyed that. The puppy liked her big toe. :-), then it did a "number one" on a friend of ours who was spending the day with us. Christina thinks that was funny. THANKS CARRI.

Well I guess that is about all there is right now. We will be busy with nurses, and doctor visits and everything, so if I don't do an update but once a week that is why. Please keep signing the guest book. I read the some of them to Christina, I am picky about what I read to her.

Please keep praying and believing for a MIRACLE. Some one holds the key. Pray for our little family too.

God Bless

Lori

Friday, August 1, 2003 10:20 PM CDT

Hi everyone, we are still home, can you believe it.

Things here are not going so great. Christina's health is going down hill. (for lack of better words)

I left her Monday appointment with Dr. Wheeler with a heavy heart. Christina's lung functions are dropping, on Monday she was down to 18% and by Weds. she was at 15%.

Anyway on Monday we decided to place her on oxygen as needed and then at bed time. Dr. Wheeler also told me that he thought it was time for Hospice to come. St Louis is in agreement with him. And as much as I hate to say it, I see what is coming. Everyday I see a decline in her condition.

Christina is the strongest little girl I know. The Lord gave us the chance to talk openly about what was happening with her, and what was going to happen if her lungs did not improve. She had some questions, and I think God for helping me answer them. The next day Dr. Wheeler talked with her about what was happening and she understood. Though she did not really talk.

Christina is still very quiet for the most part, but for a little bit each day I have some of my 'old' Christina back. She told me on Weds, night that Old Christina was coming back, and little by little she does.

Tonight we had a little talk and I asked her what was the first thing she was going to tell her daddy about, and she told me all about her room, she loves the way we did it. I also asked her if there was any animal she wanted to take with her, and she was hold a little balleriana bear that she had she was about 2. We talked about how much she use to love pink, and wanted to be a balleriana. I told her was jeleous of her, cause she was going to see daddy and I wasn't she gave me a mischevious grin, like hahaha.

I really thing she is okay with everything now. I asked her if she was to, not anytime soon, pick out one of her dresses that she wanted to meet daddy in and she said yea. I told her too, that I bet he looks at all of them and thinks she is the cutes little girl in Neosho.

Anyway, I want you all to pray for us. Some of you have been in my shoes, and you know the feelings that I have, I told our social worker at Children's I feel like an emotional milkshake. Sometimes, I feel peace when I talk wth her about it, other times, I feel ?????????

She is such a strong child, her brothers are too, they understand what is happening, and of course don't like it and are praying real hard for God to perform a MIRACLE anyday, like we all are. But they know that if He does not do like we want, that she will still have her miracle. I explained dying to Christina like taking one step in this sick body and the next step is in a perfect body, without even a scar.

Well I have to run, hope to hear from you all soon. PRAY for us all

God bless

Wednesday, July 23, 2003 10:13 PM CDT

GREETINGS FROM NEOSHO :-)

Well we have made home for 4 days now. So far things are about the same as they were in SL. She is still not really talking to anyone, and still throwing up, and not eating and drinking.

She seems to have no real energy to do much and I guess part of it is her pulmonary functions. They are still in the 20%s and the lower airways are less than 10%.

We are adapting to our schedule with the doctors and home health and pt appointments this week and so far things are going okay. Tomorrow is lab work at the doctors and pt. During PT on Tues Christina needed to go on oxygen while walking on the tredmill, her O2 levels went into the 80's and with the O2 on they stayed in the 90's were we like them.

Her brothers are in TX at camp and having the time of their life, at least that is what I am thinking cause I have not heard from them. They were quiet easy to wake up at 3 am on Monday morning, even after going to bed late the night before, they were ready to go.

As for Christina taking the TPN/Lipids so far things are going good, I went and bought her a backpack on wheels so she can pull it along with her, it is quite heavy to carry, almost too much for her. So now she can move around, whenever she does move that is.

Keep her in your prayers,

To be specific, pray for her energy level, her lung functions, her depression, and that she would start eating and drinking some.

Got to run and get ready for bed, tomorrow is an early day.

Thanks for stopping by

Lori

Saturday, July 19, 2003 9:27 AM CDT

Good morning

Today is 'D' day, or discharge day. I know the last time I wrote we were to get out on Weds. But for other reasons, it is today. The 'game plan' is the same and all though.

I am hoping to get out of here by noonish at the latest and get on the road. I do have a few things that I need to do before then so this is going to be short, at least until I get home.

Christina is doing the same, she is still vomitting and sometimes with blood, but that is nothing new. The question of what is causing it is still a mystery, but we are all watching everything closely.

The BIG goal is to keep her OUT of the hospital as long as possible. And if anything needs to be done, we will try it all out patient first. Dr. Wheeler can do a lot from his office if we have too. However, if there arises a need to put her backin we will do that too. But it will have to be the last straw.

I think she will do much better once we get on the road and head for home. Children's is an awesome place and we love everyone here and beleive that they all care deeply for Christina, but like the old saying, "THERE'S NO PLACE LIKE HOME"

We are also planning a little surprise party for Christina tonight, I am going to have to go to Wal-mart when we get home for the basic stuff like milk, etc, so while we are gone everyone will be coming over. I can't wait to see her face, I just hope she is not too wore out from traveling. But she usually sleeps most of the way home. And since she is not eating stopping for food will be no biggie, I will drive through a drive through somewhere if I need too.

So, until maybe tonight or tomorrow have a great day and pray for our travels.

Lori

Tuesday, July 15, 2003 8:36 PM CDT

Good evening everyone

Well here is another update on Christina. And again sorry that I have not been that faithful this time around.

Tomorrow is 'D' day, or 'discharge day'. That is right she is finally getting out of the hospital. Then we will go home on Friday or Saturday.

Here is the game plan for Christina:

1. She is going home on TPN and Lipids.
2. She will be seeing Dr. Wheeler twice a week.
3. She will have a home health nurse come to the house two
to three times a week.
4. She will keep up with physical therapy 3 times a week.
5. If it looks like she is dehydrating then she will go the
doctors office for some IV fluids. They have added
fluids to the TPN to help. This is to keep her out
of the hospital at all cost.
6. In Sept. she will return for corrective surgery, and
have the intestines reconnected and then have a 'G' or
'J' peg put in and have feeding through that.
7. We will be watching her weight and vomiting very
closely.

That is about all right now. Tomorrow she will get her IVIG, and then out of here sometime. Of course a lot depends on the home health care supply company to come and show me everything I need to know.

Tomorrow morning Christina is also going to have a 6 minute walk test. I am thinking about getting a 'wheel chair' for her. Though what I am wanted does not look like a wheel chair and it folds up like an umbrella stroller. A friend of ours has one for her son. I will see if we can't get one for her when we have to do a lot of walking. She just can't keep up and tires very quickly.

Well I guess that is it for now. I promise to do better when we get home home. I will have my computer then. :-)

So until next time. Keep praying. Pray she starts eating and drinking, she is still not doing either.

Lori

Thursday, July 10, 2003 11:37 AM CDT

Hello everyone

Christina's picnic was a success. At first she was not really into it, but after a little while, she was starting to smile some, and then Dr. Sweet came in and sat next to her and he had us all in stiches. It was fun just to sit back and watch her and him go back and forth. He did request that she make some cookies, so that will be the next project that she will be doing.

She also went for the Broviac this morning and did quite well, the spot where the port was is very sore, but the broviac site is not painful at all.

We still have no dismissal date, although we are all working hard on it. All that is but Christina. She needs to drink. They have added some extra fluids into her TPN, but if she does not drink, her numbers are too high, and they don't want to send her home with IV fluids. So we will just wait and see what all will happen in the next couple of days.

As for her mood, she comes and goes. She does not like PT, and is usually ready for her bed when we are done. She is also still vomitting, but I guess we will just have to live with it, there is nothing the is showing why.

So until the next update, I am not sure when it will be, I guess when something happens. Unless you all would like it daily, I can do that, though it might be boring.

But anyhow, thanks for stopping by and don't for get to sign the book

Lori

Thursday, July 3, 2003 1:04 PM CDT

Good afternoon. I will try and do a "real" update on what is going on here in SLCH.

As I said Christina is still down, but has a few good moments. Today was a busy day. She had a DEXA scan today, and of course with the way things go for us, the machine's computer quit on us, so we will have to go back over to Barnes and do it again later. Right now Christina is in with Susanne Thompson talking, or at least I hope she is talking, she does not talk with anyone. After that she goes to physical therapy for an hour.

Mornings for the most part are Christina best times. I get her up, mostly against her will, and then she is up until after physical therapy. After that she is not happy with me or anyone, mainly becasue she feel worn out.

As I said earlier Christina is doing great from the surgery, but she is not eating or drinking at all. The only time she will drink is a little bit of juice with her pills. She states that she is not hungry or thristy. she is still on TPN and Lipids with IV fluids for about 18 hours a day.

We are trying to keep her unhooked from the IV pole for a few hours a day. We are hoping to be able to get a pass to go out of the hopsital for a while, although that has not happened quite yet. She is a popular girl and everyone wants to see her. :-)

Christina is still vomiting and so far we have not found anything to help or stop it. Nor do we know the cause of it. It does not matter what she is doing whether up and moving or sleeping. She is a mystery

As for her port issues, we are going to be doing a Broviac sometime next week. Because Christina has no choices that she really can make as far as her care, she is having a say in the Broviac. She is tierd of being poked and I think is ready for this. We listed the pros and cons, and this afternoon she is going to talk with her doctor about it.

Also, sometime next week we are planning on her planning and preparing a picinic and she will make the invites and invite who she wants too. We told her that she did not have to eat it, but she could if she wanted too, just that it would be something fun to do. She right now really does not want to do anything, but I think once she gets started on it, she will enjoy it. I will let you all know how it goes.

Well I guess that is all for right now. I will try to get an update more often to you all.

Thanks for coming by. And please don't forget to sign the guess book.

Thursday, July 3, 2003 9:55 AM CDT

Hi everyone

Sorry for not updating as often. There really is not much going on right now.

But I am in a bit of a hurry, we have a dexa scan to get to soon.

I will try to get an update going tonight, and let you all know what the plans are and the goals are.

So until later.

Love ya'll

Lori

Saturday, June 28, 2003 7:39 PM CDT

Good Evening.

well just another day here at SLCH. Not a whole lot going on right now, just hanging out in the room.

I did get Christina up and walking twice today, not that she really wanted too. She is still very down and mad at times. She actually yelled at one of the nurse's who was trying to play with her. I did have to tell her that though I know she was not feeling well, that behaviour is not acceptable and I will have to paddle her bottom if she did that again. She totally understood.

Please pray that things will change for her emotionally. I am hoping that she is not giving up. I have seen her down before but not quite like this. She does not want to see anyone or talk to anyone, not even her brothers. She really does not want to talk with me either, though she wants me close by. I do leave the hospital though for a couple hours daily to go to the RMH and chill or whatever, if I did not do that I would be crazy. Though I think I am there right now ;-)

Christina is still vomitting too. She is only doing small amounts at a time, like 60 or so cc's but they have added up to close to 500cc so far today. They have started her on clear liquids, though she is not eating or drinking. She did take a sip of apple juice, but that did not stay down very long.

The thing I hate about weekends, is all the reg. docs are gone and you get others who really do not know your child, they are good docs. but they do not know what is going on. I know they are updated on each child, but it is not the same as being here and seeing what is happening all week. I am glad there are only two days in a weekend. (at least for now)

Well there really is not much more going on. Keep praying for her and the boys. Oh yea and while your praying there are several other children here we know that are waiting transplant or having some problems.

Thanks, until later

Lori

Friday, June 27, 2003 9:48 AM CDT

Hello again form SLCH

Sorry I have not been very good about doing daily updates. I have no real excuse :-)

Things are going okay. Christina seems very sleepy today, infact she is still asleep. She has PT at 11, so she should be well rested for that. I am going to get her up and ready in just a little bit.

She is still not eating anything or drink by mouth yet, we are not sure when surgery will let her. She is still vomitting and nausated too. Her Oxygen levels are still dropping when she is sleeping. Her pulmonologist wants PFTs done, but this may wait until Monday or sometime next week.

I think her stables, (almost 50 of them) will be coming out soon. We will see. I don't kow if I mentioned it in the last update or not, but, one of the things she is mad at is:

She had not say in doing this surgery. Her transplant she knew about and was ready for but this one, no one asked her. I hope that she will soon realize that we had no choice in the matter, it was do this or lose her. She is very upset about the illiospomy (sp) and rightly so. She does not want to go any where with it. We all are trying to work with her on this, please pray that God will help her accept it and realize that it is not going to be forever, at least we pray not.

Well Got to run, talk with you all soon.

Lori

Tuesday, June 24, 2003 8:31 PM CDT

Good Evening

Today was a good day for Christina. She sat up in a chair for most of the morning and then she went down for physical therapy, and then to bed. She rested for about 2 hours and then she was off to 'counceling'.

She did talk alittle with me and Susanne about the surgery, she is mad, because she did not know about it before it happened. She said the it is not fair. With the transplant she knew about it and was ready for it, but not this.

We changed the illiostomy (sp?) bag today and she said she was not going to look at it or even touch it. Though it looks real good. She hates it, and is having a time with it.

For the most part though Christina was doing good with emotions and all. She is mad at me from time to time, cause I make her do things she really does not want, but that is okay.

She was upset this afternoon when she wanted a drink or something to eat and we told her we could not do either. We did swap out her mouth with a toothett and cold water, but she was mad, she wanted to swish Dr. Pepper in her mouth and she promised not to drink any of it. I explained to her that some will still get into her stomach, and although the 'G' tube is still sucking stuff out, it would not be good. Also, that the surgery docs would be very angry at us and the nurses for allowing it. She setteled down and did fine with the swaps.

There really is not much more to say right now. Oh yea, she had a CT yesterday and there was still some swelling in the intestines and they were not sure what from, either healing from surgery or from something else, it will be watched, and the worst case would be to have to remove some more intestines. We pray that will not be the case.

So until next time.

Keep up the praying God is moving.

Lori

Saturday, June 21, 2003 4:28 PM CDT

Good afternoon.

Things here are a little better. Christina is still very sore, and sick at her stomach, with mild vomiting.

I made her get up this morning and to the garden, though she did not like it. We then walked around the hospital for alittle bit and then I had to sit in the chair for a while.

She is starting to have some problems with her oxygen levels staying up while asleep. So we are putting her on a little bit of O2 just while sleeping. She does alright then.

She is still down and depressed, I am not sure what is going through her mind, she is not talking and when asked she says nothing. She really does not want to talk at all, not even yes or no. I am making her though

We started a sublingual antidepressant, and hopefully it will start working soon.

As to what caused all of this we do not know, I have been questioned if I was mad at SLCH for missing whatever, and I have to say no. It is not like the missed anything. Even at home nothing showed up on x-ray until Friday. We will just have to wait for pathology to get answers from the tissue studies.

It will be a long road to total recovery, but she is strong and as long as WE can keep her incouraged I know she will do good. She is my little miracle three times over. I will never forget what GOD has done for her. And I am sure once she is well enough to understand all that happened she will be very thankful too. She has said in the past that God has His hands on her, because she was not too live to be 12 months, and we did not know that until she was 33 months. Then she made it through transplant.

Well I have to get going, I will try to update better than what I have been doing. I guess I have been just wore out, it is all catching up with me. But, we will make it through.

Keep praying for her and her brothers, I know how hard it is for me to be away from them, so I know it has to be harder for them to be away from me.

Until tomorrow

Lori

Oh yea, please pray for another family who lost their son yesterday afternoon after a long fight after his second lung tx, he was 5 yrs old. There names are John and Debbie. Thanks

And one last one, a friend of ours is going to come into the hospital on Monday and start a new med, this will put her on the top of list for a heart and double lung transplant, they have been waiting long enough, pray that the call comes soon. Her name is Kaycey, she is 13 (maybe 14?)

Thursday, June 19, 2003 9:32 PM CDT

Good Evening

Things are some better, and then some worse. Christina came out of the PICU yesterday afternoon, and was doing pretty good yesterday morning. However, by the noon time she was vomiting and in a lot of pain.

She continued vomiting throughout the afternoon and evening. An x-ray was done and it revealed that the G tube had move downward, and it was pulled up 6 cms. This helped for a little bit and more stuff begain to suction out of her belly. However, not enough, she was still vomiting this morning and another x-ray was done and again the tube was moved up 6 cms. Also there did not show a lot of movement in her belly or intestines. The surg. team is going to watch this closely and if there is no improvements, then more test need to be done.

Christina is also depressed. If you recall we had started her a while back on Celexa to help, well she has not had any for sometime now, and it does not come in IV. They are going to discuss what does and what she can have with all the other meds. As you can imagine, nothing goes into her mouth, not even a swallow of water.

This is going to be a long road for her to travel. We are not sure how long it will be but long. Please keep her in your prayers, and pray that God will give me strength to keep going.

Also, please, please Pray for her brothers, Josiah and Stephan this is very hard on them. I am not sure if they really understand how close we came to losing her. But all of this and me being away from them is getting to be too much for them. I might see about getting into one of the apartments at the RMH if it looks like we will be here for more than a month. This way we will have more room for the boys.

Got to run, thanks for stopping by, if you want to send her a card you can send it to the hospital, her room is 7W52.

Lori

Monday, June 16, 2003 5:02 PM CDT

Good evening

Okay, Now I am more clear headed than I was the other day. I guess that would be yesterday :-)

Christina is holding her own, though she is by far out of the woods.

Let me give you a little bit as to what happend last week, and maybe it will all make sense.

Last Monday evening around 6ish she started vomiting the coffee grind looking stuff, and by 11:30 she was still doing it with a lot of belly pain. We went to the ER at St John's in Joplin. She of course was admitted, and she continued to vomit. The vomiting slowed down once again and by Thurdays she was feeling pretty good.

On Friday she starting the dark vomiting again, and she was not feeling good. She was asking for medicines by name to help her, things she knew that would make her sleep.

Around 5 or so, her belly was swelling, and measured 72 cm. We measured again around 10-11 and it was 76 cms. She was in much pain, The nurses called the on call doc in and by time she got there she was having problems breathing and was hurting on a scale of 1-10 a 20. The doc came in and called in a surgeon to consult with and he said that Christina had a "surgical belly" and we needed to get her to SL. By this time Dr. Wheeler came in too.

Because of the fog both in Joplin and SL we were unable to fly and ground would be out of the question.

Christina was moved to the ICU and a CT of the belly was taken, and it reveal that her intestines were twisted and she had a major obstruction. (I would go in to details, but I am afraid I would get some of it wrong). Dr. Wheeler called the surgeon back in and she was sent to emergency surgery by 7:45 am. We we not given much hope of her surving the surgery.

Let me back up a little before this, Christina has started turn blue in her fingers and toes, and some around the mouth, her was also modeling (or turning blue through her legs) NOT a good sign.

She was out of surgery around 11:30 and back in the ICu by 12ish. She was looking much better, and was pinker. However, the concern was her B/P they were danagersly low, and she had several meds to help them come up.

We were going to wait until she was stable to move her to Sl maybe on Sunday. However because of the B/P they wanted to get her here ASAP. The catch was to get the top number to at least 60 before transporting her. Dr. Wheeler told me that I needed to know that there was a chance that she would not make the trip and could die in the air. I understood that and also knew that we had no choice. I was just praying that we would go be fixed wing and they would let me fly with them.

So around 6 Saturday evening the transport team from Sl was there and yes, I was going to fly with her. We arrived at the Spirit of St Louis airport around 8 and to the PICU about 45 minutes later, at least that was went I looked at the clock, so it might be a few minutes on way or the other off.

As of now, Christina is holding her own and we are watching everying thing. She is still on the vent, but doing some breathing on her own, this is mostly to help her lungs, which are doing fine.

She is retain a lot of fluids, and diuretics have been started and will go every 12 hours. Just since 7 this morning she has put out about a liter of fluids.

Christina is a fighter and she will not give up, she was even mad at me a little bit ago when I moved her hand away from the vent tubing.

She is far from out of the woods, though there are improvements. She is a MIRACLE. God's hand was and is on her and He allowed the perfect people to be in the right place at the right time, and without them I would not have her here with me. Dr. Wheeler said "faith without works is dead" and several people had the faith and they did the work and she is alive and with the contiued help of God and all of her wonderful doctors she will be getting better, minute by minute.

I was to thank you all for stopping by and please don't stop praying.

Lori

If you have any questions please feel free to email me
I hope it makes some sence. I am not proof reading :-) to lazy

Oh I don't know if I mentined it, but they had to remove 3 feet of her intestines and her wt before surgery was 31.5 kgs or about 69 pounds, and when we got her she was 26.3 kg or about 57 pounds

Sunday, June 15, 2003 7:20 AM CDT

Good morning from SL

This is going to be a quickie. Christina is in the PICU right now. Last Monday she was admitted to the hospital at home for vomitting blood again.

By Thursday she was starting to bloot and then Friday morning she was in the OR, she has a block blowel and it was effecting the liver. She had a lot going on, I will update you all on the details, when my mind is clearer.

Anyway, they took about 3' of her large intestine out. She is stable right now, but very, very ill. She is on the vent to help her lungs out (so far they are doing well).

So until a little later, maybe this afternoon. Please PRAY LIKE YOU NEVER HAVE BEFORE. I CAME VERY CLOSE TO LOSING HER THIS WEEKEND, AND SHE IS STILL NOT OUT OF THE WOODS

Lori

Saturday, June 7, 2003 4:12 PM CDT

Greetings from Neosho!

That is right we are home, we arrived home on yesterday afternoon. I did not want to post the fact that we were leaving SL, because I wanted to surprise my boys, and boy did we. It was so neat. They were at Pizza Hut and we walked in around 5:30. They both looked up at me like I was not real, and then it hit them both at once who I was.

Okay here is the game plan for Christina. We are home for two weeks and go back on the 22nd. She still has the NJ tube and is getting night feeding through it. If she by time we go back is not eating or is still throwing up, then we will have to do the Jpeg. So far we are still throwing up and not eating. Her wt up to about 71 pounds, thanks to the feed. When she vomits her meds, we are just re-doing them. There really is not much more to do.
I am only going to do her PFTS about once every other day, and same with her B/P. She is seeing Dr. Wheeler on Monday.

She had physical therapy today, it was rough going at first, because she threw up and then her stomach was hurting pretty bad, and we placed some towels on it and that seemed to help. Once she got going she did okay. She gets a little bit of a work out walking to the rehab room at the hospital here. So she gets up there and is ready to rest for a little bit.

It feels good to be home, I have so much work that needs to be done here, but right now I thought I would do a quick up date and let you all know what is going on.

So until later,

Lori

Sunday, June 1, 2003 10:36 AM CDT

Good morning

A lot has happened in the last couple days, and my mind has been heavy so thus I did not feel ready to do an update.

First, Christina's upper GI did not show anything really, and so Friday she had an endoscopy and it showed several things going on with her esphogise (mind went blank sp?) and she has an ulcer there and they did a biospy of her stomach and what have you. She right now has another NJ tube in her nose to gets some feedings at night. I am still not sure if we are going to go for the j-peck which will be in the abdominal area and not the nose.

Also, on a sad note. Christina's room-mate, with whom she was always doing stuff with for the past 2 weeks, died while Christina was in the OR. She was waiting for a heart transplant and had a heart attack, they coded her for 30 minutes and were not able to bring her back. Please remember her family. Her mother and I also had gotten pretty close and were able to go and do something together.

It brings it all too close to home for me. This was the first "friend" that Christina had spend time with that has died. She knows of other children who have passed away, but none of whom she really played with. I have talked with her yesterday about it and she just kept staring at me. I am not sure what she is feeling about it. She is not talking about it right now.

Oh, it is for privacy reasons I am not going to say the name of the child or family members, but I do ask for prayer for them God knows who they are. And He knows the pain they are feeling right now over losing a child. He too felt that pain.

Keep praying for Christina too.

One last thing, I want to say a BIG THANKS to Kurt and Mary Kimble for all there help with the boys while we have been away so much, they have kept them since the beginning of the year almost. Also to the Uncle Brian and Aunt Tina for stepping to the plate and helping with them too. Of course Grandpa is always there too, and we would be lost without him and his love for the kids. God knows just want people to put into play when we need help. I also want to thank the Dunnings and the Bonds for their help in fund raising for the COTA for Christina account. And everyone else who has had a special part over the last several years. Also, Beth it was so neat to meet you yesterday. Looking forward to seeing you sometime tomorrow.

God Bless

Love

Lori

Thursday, May 29, 2003 4:32 PM CDT

Good afternoon

Here is todays update.

Christina had the upper gi and vomitted a lot of the contrace up, but what she got down was okay. Her stomach does move slowly and that might be the problems, but not convinced. Tomorrow she will go for another NJ tube. THye will see how she does with this, and if she does okay, and does not throw it up, then the GI doc will consider a 'permant' j-peg. She was up and down from her room to radiology for almost 4 hours. Talk about going crazy. :-}

They also moved our room again, they had to make room for some boys coming out of the PICU. So now we have a roommate, and we are in bed A -gross-, But we have been promised a B bed right away, though the one they promised now has two boys in the room. I told Christina that I will not be sleeping here tonight. She knows her roomate, and they have fun together so I was going to the RMH.

Well I guess that is all for now. I am about to go crazy so as soon as Dr. Sweet comes into the room I am going to go out and do something for a while. Don't know what but anything that sit here, it has already been a long day, too long.

Later

Lori

Wednesday, May 28, 2003 11:14 PM CDT

Hi everyone

Well today Christina had a spinal tap so that we could totally rule out the psuedo tumor issue. She had some fluid but nothing major. Her vomiting has slowed down some, but she is still doing it. She slept most of today, because of the drugs given to her for the tap.

Tomorrow she is going for an Upper GI, and then from there if nothing shows up she will have an Endoscope. We will take it day by day. They are all working really hard to figure out what is going on and why she is still throwing up after almost 5 months.

Christina is still not eating yet either, she tried a little steak yesterday (a friend cooked some at the RMH). She has one bite and well, that did not stay down even 20 minutes. If she is asleep for the most part she is good and does not vomit, though at times she wakes up and does it and then goes right back to sleep.

I will let you all know what I find out tomorrow evening. Until then take care and keep the PRAYERS GOING.

Love

Lori

Sunday, May 25, 2003 9:56 PM CDT

Good evening.

Another day here is St Louis. Today started out pukey, and then got better for aobut two hours, and then we started in again.

Christina is still vomiting and having a hard time evening keeping her meds down today. We have tried several times tonight and have gotten half of them down, she is getting some phenagren right now and hopefully that will help in a little bit and we will be able to keep the rest down.

Her blood pressures are still high and we have doubled her B?P med, and so far it is not working we are still having some high readings and having to do Nifedipine under her tongue to bring it down.

I really hate that tomorrow is a holiday, normally I would like it, but that means nothing is going to be done tomorrow either. Everything that is being talked about seems to be on Tuesday. I know that Docs and all need a break too, but when you are here, it gets to you.

I did get Christina out of her room today, against her will of course, and made her walk the hall way a little bit. We have also made a new friend, a little girl here waiting for a heart transplant, they are from Ok City. We kindof had a little party tonight and watched a movie in our room with her laying on the 'couch' and Christina in the bed, and her mom and I chilling in chairs. (no we don't have roomie now, Pray it stays that way).

I guess that is about all there is right now. I will let you know if anything else happens.

Oh yea, I think that they are going to start the TPN on Tuesday if I understoon the Fellow doc today.

Until later

Lori

Saturday, May 24, 2003 4:39 PM CDT

Good afternoon all. I pray this finds everyone doing well.

Here is a quick update on Christina. She is Still vomitting. Yesterday we ran some obstructive series of x-rays and a CT of her belly. So far I have not heard from Dr. Sweet.

She is also having some blood pressure issues while here, that have had to treat some high ones with nifedipine (SP) She is also on severl antibodics (IV of course) She is taking some of meds iv, and some she has to take orally, like the tracolimus (the anti rejection drug).

She is looking so weak and does not want to do anything, even when the girls from child life offer to bring things too her to do she does not want to. She is one sick little girl.

She has the team confussed about what is going on with her. But I think the are determined to figure it out and not send her home until they know. I pray it is soon.

If you would like for me to send you a detailed update, please email me and I will do so. I am going to try to keep the detailed updates to me personal email list. So let me know, and I will add you to that list. I will keep this going here too and try better to get an up-date in here daily, it is just things have been crazy for the last few days, today is quiet, she is sleeping right now, and for the most of the day, thanks to phenegren and benedryl.

Well, talk with you all later, thanks for coming by and PLEASE KEEP PRAYING

As always

Lori

Thursday, May 22, 2003 12:31 AM CDT

Good afternoon

Sorry I have not update of late. Things have goten crazy.

When I last updated, I stopped short because Christina was sick. Well she is still sick and vomitting and such. She spiked a temp last night and we are waiting for cultures, but they also started two IV antibodics, one is the Vanc, that she was on not too long again and the other I can't remember. She is getting IV phenegran right now, so she will stop vomitting we hope, it usually works. It will also put her to sleep.

We have also stopped the ATGAM two days early, mainly because of the temp I think. OI have not seen the doc yet this morning, so I will wait and see what all he has to say.

Once again starting TPN on her was mentioned but, we are holding off on it too.,

Got to run a visitor just came by,

later

Lori

Tuesday, May 20, 2003 10:11 PM CDT

Hi sorry that I have not updated in a few days and this might be quick.

Things have been okay for the most part, she was having some issues with her port, but I hope we got the fixed. She is not feeling good rightnow and is vomiting and having heart palpations, or where she feels her heart pounding hard in her chest and fast. The nurse is watching her.

Please keep praying for her and her brothers, it is hard on all to be apart so much. The boys are doing good, and Mary is doing an awesome job with them. It is so neat to hear how they talk aobut her.

Hey got to go, Christina is not feeling real good right now and they are in there with her.

Later

Lori

Saturday, May 17, 2003 9:37 PM CDT

Hello

Well today was another uneventful day, well for the most part.

Around oneish I noticed something on Christina's top and look at the port site and saw that it was infiltrated. This is not good. The nurse came in and looked at it too and I was right. We had to finally deaccess her, the atgam had just finished running. Though a lot of it is in the chest and not the vein, not sure what that means in the long run. She was leaking out of the spot where the needle was, and to be honest it was comical to everyone, even Christina.

After several hours and hot packs hoping for the swelling to go down, The nurses tried to get the port working again and failed, so the plan is to have Dr. Huddelston try it in the morning and then we will go from there. For some reason this new port has been a lot of problems from the beginning. We will see.

So the rest of the day was spent chilling out, she went to the play room for about an hour and then we just hung out in the room. Later this evening we came in the computer room and did Disney and played several games on it, and of course in between our games the nurses were looking at her chest.

I will let you all know what happens in the morning.

Thanks for stopping by

Love

Lori

Friday, May 16, 2003 4:59 PM CDT

day 12 in St Louis

Good evening, day 3 is done with the ATGAM and things went okay today too.

I did learn today that even with the ATGAM Christina's PFTs may not come up, but will level off where they are (at least that is what we hope). Also, the shortness of breath and all of the other stuff like that may just stay the same. But this is going to slow down the rejection.

Some one the other day asked if she had had rejection in the past and I said she has never had acute rejection, she just went for the "grandmother" of rejections. I guess you can say she skipped the minors and went for the majors. :-)

She was not too happy to hear that she needed to wear a mask today when she left the floor. She was not going to get to leave it at first, but as long as I was with her and she wore the mask and washed her hands then she was able too, we did not stay gone to long, we just went to the gift shop, they are having a sale on Groovey Girls (a type of rag doll that has everything to go with it.)

I honestly do not think she understands all that is going on with her right now. I tried to explain it to her some, but either she is not hearing me or it is not sinking in.

Keep praying for her, I know that GOD IS GOD and that HE WILL DO AS HE WILL.

Until later

Lori

Thursday, May 15, 2003 10:12 PM CDT

Good evening.

Today things went okay, she is still hving no reaction to the med, thank GOD.

We thought that we would actually make it through the day without vomiting, however, we were wrong. She vomited everything liquid she had to drink today and more. She is feeling fine right now though.

She is to start physical therapy hopefully tomorrow afternoon, that is if we can get the ATGAM started earlier in the morning. She should be getting it over a shorter time tomorrow too.

Well there really is not much more to say right now, she is holding her weight right now too, and still not really eating like she needs too. I am not sure where all of that is going to go right now, but when I do I will let you all know

Thanks again for your prayers and for stopping by

Lori

Wednesday, May 14, 2003 11:22 AM CDT

Well,

Yesterday we did not get a bed and so Christina was admitted this morning and we are now waiting for some labs to come back to get started, I thought they took enough blood from her on Monday, but they took more today both from the prot and then from a stick.

Yesterday, Christina ended up throwing up all evening and night, she is feeling much better now thank God. Part of it is that she is not eating, she did not have anything yesterday to eat, and finally I got a cracker down her.

She really has not eaten yet this morning, a bite or two of my yogurt. Her weight is now down to 69 pounds. I do not know what they are going to plan on doing if she keeps losing.

Her spirits are good for the most part, though yesterday she admitted to now feeling good. She will not be happy when she is ready to go to the play room or somewhere and realizes she is not allowed to leave the floor. :-(

I will update as the ATGAM goes and let you know of any thing that happens.

So until later, remember to look for the change in the back ground to know there has been an update, either a new page or added to this one.

Thanks and let us know you came by


7:46pm

Well so far so good no reaction to the ATGAM. Of course sheis pre-medicated with three different meds and that helps.

I will admit now that she is awake she is so bored. I am not too sure how she will survive the rest of the course. :-)
Though after tomorrow if she does fine then we will be able to cut the time by at lease an hour or two.

Well, that is about all there is right now. I think I am like ready for bed, it was a long night last night with her being sick, and every time we are here I get sinus and tension headaches, need the neck popped, any volunteers.

So until tomorrow take care and have a good night.

Lori

Tuesday, May 13, 2003 10:33 AM CDT

Day 10

Good morning.

We are starting the atgam today, well I say we are. We were admitted this morning, however, we are still witing for a bed. The room they had Christina going to has a girl with Rhinovirus, so that is not going to happen. They just received the results of that childs tests.

So we are waiting for a new room. I am hoping for bed B. But if a room does not open up before three we will be admitted tomorrow morning again, and hopefully they will have a bed ready for her. This is getting old. I know that they have to be careful with who she goes with and I am glad they found out before hand. Also, that Carol, the nurse pract. came down to one to let us know personally instead of just calling down to us.

I will let you know when she is actually on the floor.

Thanks for stopping by

Lori

Monday, May 12, 2003 3:24 PM CDT

Hello

Sorry for not updating last week, one I did not have the computer and two there really was not much to update.

We got the results of the GFR (kidney study) and thank God the kidney function is the same at 31%. We are going to have a lot of lab to do before we start the ATGAm to make sure things go good.

So for her eyes things are looking good there too.

We went to clinic and did full pfts and her numbers are down some more, not that I am surprised. Also, we tried to get her port working and for some reason we can not draw blood back. This is not good, we are waiting right now for the doc to come and try it. We are needing at least 30 ccs of blood for a bunch of testing.

Christina's weight is down to 71 pounds, this is down for her high of 85. She has no real appitite, and when questioned about it, she is just not hungry and nothing sounds good. She can't really afford to lose any more weight. We will see what all they say. The dietation was in to see her today and talked aobut some Boast suppliments, we will see.

Also she is bruising and reasons we can't explain. Dr. DelaMorena looked at them all (one the back of her legs and were her new port is) I guess the key to that is to wait and see what her counts are.

Well tomorrow morning she is finally going into the hospital for ATGAM. At least that is the plan, please pray that it happens.

I will update daily once we get started on that. So keep watching

Love ya

Lori

Tuesday, May 6, 2003 1:44 PM CDT

Hello again from SL

Yesterday Christina had her kidney function study done, and today she had her eye tests done. She has some cateracts (sp) but nothing to worry about, they doc feels that they mighthave been there from birth and that it should not interfer with her vision, her pressures are up a little bit from the last time. but still within normal ranges, this would be from the predisone.

We are waiting to hear from nephrology about the B/Ps they are still too high for where they want them. Also to hear from the GFR study. I am anxious to hear about the function of her kidneys.

She is scheduled for full PFTs on Monday and then clinic and we should have a good answer as to if we will be able to start the ATGAm. I am so ready to start it.

Christina seems to be getting tiered mor easily than normal, she gets winded just walking frm the grage to the elevators. She wanted a wheel chair this afternoon when we got here for her appointments, of course I said NO.

Well, there really is not much more going on right now. I will try to update as I know suff. I did not bring the computer from home, as I felt it was too much to worry about. I wish it were smaller, but this works too.

Thanks for stopping by and don't forget to sign the book :-)

Until later

Lori

Wednesday, April 30, 2003 10:52 PM CDT

Hello everyone

Only 4 more days until we head back to SL. I can't wait.....not.

There really isn't much to update about right now. Christina is doing okay for the most part, she still seems a bit winded at times, but she is ok. She is even taking meds okay. From time to time she wants to stop and go real slow with them, and of course it is at those times, she vomit. When some 'tough love' comes into play she does better. :-)

Christina had a good laugh at me today, I went to the eye doctor, and when he asked me to read the top line, I told him that it was a blur, she thought it was funny, because she saw it fine. Then when he asked me if I take my glasses off to read at times, and I said yes, and then he asked if my arms seemed shorter, she really did not understand but laughed again. I, by the way, do not need bi-focals, just stronger glasses. So she was able to help me pick them out. She enjoyed that, especially when I picked some that were like, ugly as sin. She thinks the ones I chose are cool. We will see what everyone else thinks. lol

Her blood pressures are starting to drop some, of course just when I get excited about it, it shoots back up tonight, though now with a dystolic of 100+ thank God. Her PFTS continue to be in the 30 percentiles. She was hitting the 40's but now stays in the mid 30's :-( the highest she was, was in the upper 80%s and her lower airways in the teens. (remember these us to be almost 90+)

I so hope that when she starts and finishes this atgam she will have more energy and not be so short of breath.

I still don't know when we are going to do that. I know she is only scheduled for the GFR study and the eye field test for the psudotumors that she had. And some labs to check for infection still. So thus I am not sure how long we will be in SL, anywhere from 1-4 weeks I guess. But rest asure as soon as I know I will let you know.

On Saturday we are going to do another car wash, it is nice not to have to worry about getting it all put together now. I can show up and wash and not worry about nothing, well.....................if you know me................

It is late and we have a full day again tomorrow. I will update maybe tomorrow night if something new happens. And I will try to take my computer to SL so those of you who I chat with, I will be able to once in a while. I only wish it was a lab top and not a full computer, that is almost as old as my youngest son. LOLOLOLOLOLOL, but hey it works and that is all that matters.

So until later

Blessing

Lori

Wednesday, April 30, 2003 10:52 PM CDT

Hello everyone

Only 4 more days until we head back to SL. I can't wait.....not.

There really isn't much to update about right now. Christina is doing okay for the most part, she still seems a bit winded at times, but she is ok. She is even taking meds okay. From time to time she wants to stop and go real slow with them, and of course it is at those times, she vomit. When some 'tough love' comes into play she does better. :-)

Christina had a good laugh at me today, I went to the eye doctor, and when he asked me to read the top line, I told him that it was a blur, she thought it was funny, because she saw it fine. Then when he asked me if I take my glasses off to read at times, and I said yes, and then he asked if my arms seemed shorter, she really did not understand but laughed again. I, by the way, do not need bi-focals, just stronger glasses. So she was able to help me pick them out. She enjoyed that, especially when I picked some that were like, ugly as sin. She thinks the ones I chose are cool. We will see what everyone else thinks. lol

Her blood pressures are starting to drop some, of course just when I get excited about it, it shoots back up tonight, though now with a dystolic of 100+ thank God. Her PFTS continue to be in the 30 percentiles. She was hitting the 40's but now stays in the mid 30's :-( the highest she was, was in the upper 80%s and her lower airways in the teens. (remember these us to be almost 90+)

I so hope that when she starts and finishes this atgam she will have more energy and not be so short of breath.

I still don't know when we are going to do that. I know she is only scheduled for the GFR study and the eye field test for the psudotumors that she had. And some labs to check for infection still. So thus I am not sure how long we will be in SL, anywhere from 1-4 weeks I guess. But rest asure as soon as I know I will let you know.

On Saturday we are going to do another car wash, it is nice not to have to worry about getting it all put together now. I can show up and wash and not worry about nothing, well.....................if you know me................

It is late and we have a full day again tomorrow. I will update maybe tomorrow night if something new happens. And I will try to take my computer to SL so those of you who I chat with, I will be able to once in a while. I only wish it was a lab top and not a full computer, that is almost as old as my youngest son. LOLOLOLOLOLOL, but hey it works and that is all that matters.

So until later

Blessing

Lori

Monday, April 28, 2003 11:22 PM CDT

Happy Monday, okay, Monday is almost over, but hope you had a good one.

Ours was okay, we went to Dr. Wheelers and had Christina's port de-accessed, which she is very happy for, and her B/P is still up.

Talked with St Louis about it and they want to wait until we are there to see if there is any change in it, and to do the GFR study, or the kidney function study.

We also got our handicap sticker today. This I think was the hardest thing for me to do, I really can't say why. Outside of the fact that I know Christina needed it, and I have never wanted her to need it. She was so thankful when we went to Walmart today and were able to part closer. She use to love to go to Walmart and walk around and look at things, now she is not so thrilled when I annouce the need to go there, she almost immediately ask if she can get a double seater cart. I for the most part do not give in, but when I am getting groceries and one is there I will use it, but I will not go looking for one. She needs to walk and though she does not like it, it is good for her.

Well, there really is not much more going on right now, we have physical therapy tomorrow morning and then I get to finish my taxes, I was doing them by fax while in SL, I think this was the first for the H&R Block here. :-)

As you have noticed the password and username is in effect. Please do not give it out, if someone wants it let then email me, or you can email me and tell me about the individual. I know a lot have been following Christina, and I wish I could let everyone continue, but for said reasons.......

Don't forget to let us know you were here.

Love ya'll

Lori

Sunday, April 27, 2003 0:16 AM CDT

Hello from home

Well we made it home yesterday evening, and it felt so good to be able to sleep in my own bed, I am sure Christina felt the same way.

Some changes in our plans, we were planning on being home for a few weeks, however, that is not to be. Christina blood pressures have been quite high these last couple weeks and after talking with the kidney people we up her b/p meds and then she is scheduled for another kidney function test on the 5th, and she has an eye appointment on the 6th too.

While we are there I am going to try to see if we can't look into how she is feeling and the Rhinovirus thing and get started with the ATGAM. I am not sure if we will do that then or have to wait a full week, we will see.

I can't say that we will be bored while we are home, Christina has doctor's appointments and physical therapy which started back up this morning. It was neat to see the 'older' folks there and how happy they were to see Christina back.

We also had a benefit concert tonight, it was good, both groups that sang did an awesome job, and though there were not as many people as we hoped we raise a good amount for the COTA fund.

There really is not much more to say, but continue to pray for her, she still needs a miracle and we serve the God who performs them.

Hope you all have a great weekend.

Oh yea about the pass word stuff, it will start on Monday. So if you are still wanting the username and stuff please email me. I will be careful in whom it is given toom

Lots of Love,

Lori

Thursday, April 24, 2003 11:31 AM CDT

Day 25

We are going home

At least if the cultures from her port come back okay.

Christina has developed a Rhinovirus in her lungs. We will return her in a couple weeks to hopefully start the ATGAM. As you may know it is so important that there be no infection in her at all.

I am looking forward to going home, though I still wish that we were able to start the process. I will let you know if anything that will change. I will also wait until maybe Saturday to add the password, as I am hearing from some of you.

Please do not be offfended if I do not give out the password freely. Thanks so much for understanding.

Got to run, so until later,

Lori

Tuesday, April 22, 2003 11:31 AM CDT

Day 21

Greetings from St Louis

Sorry I have not updated since Friday. So here is the weekend in review, on Firday evening Christina complained that her port was hurting and then Saturday morning it was not working, we came to the hospital and the procedure center, there it was de-accessed. The rest of the weekend was uneventful.

This morning she was admitted to 7 west to start the ATGAm, but once again we have a hold on it. Do to the port issues. She is scheduled to go to the OR at 1:00 and have it removed and either another once put in plave or a central line or pic line. She will also have blood cultures drew and checked for infections, seeing how the last infection she has was when the port messed up. Then if everything looks good by Friday we will start the ATGAm if not then we start antibodics again.

She is happy to know that she will be in the OR when they put in the other line, which ever one they choose.

Sorry this is short and kindof to the point. I will do another update later this afternoon when she is out of the OR, she may be discharged later today and then we wait to see what is what.

So until later

Lori

Christina is doing well after the new port was put in place. She will be discharged tomorrow morning.

I am going to be adding a password to our web page, if you are truely interested in Christina's care please feel free to email me for the password, Please do not take this personel, I just feel the time has come that this is needed.

Thanks for understanding, I will be adding it tomorrow morning.

Friday, April 18, 2003 11:43 AM CDT

Day 19

Good Morning

Well we have a set time and date that she is to go into the hospital and start the ATGAM, it is Tuesday the 22nd at 8:00am. This is all of course if nothing shows up with the blood cultures.

Today is a lazy day, we had physical therapy and then we are going back to the RMH and do nothing, maybe even get a nap in.

Christina says hi to everyone, I asked her if she wants to do the update and she says no, that she would not know what to say, though I find that hard to believe. It is amazing how she is lost for words at times, and the at other times you can't shut her up. :-)

Well until Monday or Tuesday, have a Happy Easter and a great weekend.

Lori

Thursday, April 17, 2003 10:41 AM CDT

Day 18

Good moring once again from SL

Well we just had clinic and here is the plan:

We did cultures and depending on what they show,

She will go into the hopsital sometime the beginning of next week for the ATGAM.

She was instructed that she NEEDS to drink a lot of fluids and no caffinee. It tends to have you 'pee' more and thus with Christina dehydration.

She was also scheduled to visit Dr. Susan Thompson the psych as outpatient, although by time we get to her appointment she might be inpatient.

We are still going to be watching every area that has been a concern. Though I am happy to say that she has not been vomitting since Sunday, though she is still not really eating.

So until later, I guess that is about all. She is in the school room right now and I feel she is doing well with her school work I have seen an improvement as to the amount of work she is getting done.

Thanks for stopping by and I will write more later when I have more

Happy Easter (Resurection)


Lori

Wednesday, April 16, 2003 10:23 AM CDT

Day 17

Good morning

Things here in St Louis are doing okay. Christina has not vomited since Sunday morning. Amazing. She is in school right now and then she will have physical therapy at 1.

Tomorrow we see Dr. DelaMorena and have more blood culture drawn to make sure she is infection free and then we can start the ATGAM. I am not sure as to what date she will actually be started but soon.

Christina has been some what tierd these last two days, yesterday she took a 4 hour nap, I have also noticed that her B/P has been quite high, this might be to the new med she is on. I will talk with her doc tomorrow in clinic.

Outside of that there really is not much more going on right now. Yesterday she finished her Vanomycin, and hopefully we will not have to do anymore of it. Not that it is bad, but if we have to do more then she is not free of infection.

So until tomorrow or later today. Hope you all have a great day

Lori

Monday, April 14, 2003 9:57 AM CDT

Day 15

Happy Monday

Well, we are stil out of the hospital. Christina had her first dose of vancomycin and fluids outside the hospital yesterday and tolerated it well. What a thing to do the first thing of the day of your birthday.

First I want to say thanks for the birthday greetings in hte guest book, Christina has not seen them yet, but will when she is out of school. Second the the mailing address for her while out-patients will be c/o Ronald McDonald House 4381 West Pine, St Louis MO 63108.

This weekend went good, no real vomiting, except yesterday morning and that stopped when I finally had all I was going to allow and spanked her bottom (not hard, but she got the message). I told her that she needs to just take them meds and not think about it or do this breathing thing she does. IT worked meds down quicker this morning and no vomiting.

She saw Dr. Schlagger this morning already and things look good there, and he thinks she is good for a year, unless something happens. She was like a breath of fresh air to him. :-) And we already did labs.

Right now she is in school doing an English and spelling test. You know she is happy about that (lol). What this week holds is basically not a whole lot. School, possible PT, and clinic with more blood levels and PFTs on Thursday. Once we know she is clear of infection we will then start the ATGAM.

Tonight we are going to have a little party at the RMH with a couple of the other families there. I need to get her a little cake, etc. It will be fun.

Well I guess that is all for now I wil keep you posted as things change.

Don't for get to sign the guest book

Lori

Saturday, April 12, 2003 10:52 AM CDT

Day 13

Good news

Christina is getting out of the hospital, pending of course blood cultures and her bronch results. She will be out for about 4 days, and then have clinic and then she will have more blood cultures to make sure there is not infection anywhere in her line or body and then she will come back into the hospital to start the ATGAM.

I think she and I will be going to Walmart to look for Birthday presents and other things first and for most. She is ready to do something, I think she is the boardest I have ever seen her. :-)

She of course was told that she needed to start drinking and eating. If not she will end back in the hospital, and sooner. IF she does not start the talk about putting a "NJ button" is still there. (This is not saying that we are doing it right now.) This is not something that we are wanting to do, but, she needs to get nutrients one why or another. So far her labs are looking okay on that part, however, she has not been eating good for sometime now.

I will try to update on the bronch results later this afternoon, however, if I don't then you will know we are out of the hospital and at the RMH. I will come and do an update then on Monday. I think the big thing is, is to let her be out of the hospital for her birthday tomorrow.

So until later

Lori



Well it looks like we are getting out on IV's, but she is getting out. The bronch was looking good, of course some things take longer than others to know if anything is growing or now. But she looks good. She will be getting IV fluids too while we are home along with the Vancomyocin.

I will not update again until Monday sometime.

Have a good weekend, we are going to do birthday stuff, when we get out, we are having some problems with the port right now, they are trying to give her a little more fluids before we leave.

So until Monday

Thursday, April 10, 2003 10:02 PM CDT

Day 11

Good evening.

Today was a pretty good day. Christina went to school and did very well according to Donna her teacher. She also had physical therapy, she was tired after that, but that was okay because she received her IVIG this after noon and evening. And they have to pre-medicate her so she went to sleep, She work up long enough to take her meds at 8 and is back to sleep.

I have not heard about the PET scan yet, hopefully I will know something tomorrow. She is also scheduled for the bronch at 8 in the morning. Dr. Huddelston came by this evening to tell me that he was sorry that we had to cancel it twice, but he is the only surgeon here right now and I am sure that he is very busy.

I talked with her psychogist (both of them) today about what she and I talked about last night and they were glad that things are going okay and that she talked with me about some of her fears and questions.

Oh there is one thing that I would like to make clear. I have heard from several people that they think that Christina may die at anytime, I want to assure everyone that this is not the case. As all of our lives and times are in God's hands. We are trusting in HIM to keep things going smoothly for her. She is a sick little girl, but she is doing fine. Please, if you ever have a question about how sick she is, e-mail me before you talk. I have heard several times in the past when she has been hospitalized that she was failing, from her kidneys not making it throw the night to her lungs failing. I am not sure where people are getting their information, but things get back home to my boys and this is VERY UPSETTING TO THEM. So please check with me personally if you have questions.

I will make sure and update tomorrow night with result that I may have from the PET scan and the bronch.

So until them

Lori

OH Grandma Perkins HI

Wednesday, April 9, 2003 9:33 PM CDT

Day 10

For today's update:

Christina's bronch was canceled after we got down to the procedure center. Dr. Huddelston called and said he was not going to be able to do it. I think he was not feeling good, I later saw him walking in the hall with a mask. It has been rescheduled for tomorrow, though we do not know the time.

This afternoon Christina had her PET scan, of course, I don't know the results of it yet.

Also, some of her meds have been changed again for her belly, we will see how this works.

I just left her in her room after a long talk. I explained to her how sometimes if we are worried or nervous our bodies will react to it, sometimes in vomiting. This does not mean that she is making herself throw up, because I honestly don't feel that she is, but that she needs to able to control it. I explained that she needs to talk to me or the doctors or nurses here when she is scared, nervous or just does not understand things.

So here is our little plan that she and I have come up with. I am going to start staying at the RMH at night starting tomorrow, if the PET scan comes back normal. I will leave after she is asleep and will be here between 7:30 and 8:00 am. If she wakes up and is scared she is to call for her nurse and tell her that she is scared or whatever she is feeling. We both agreed that they will take care of her and that they all have a special place in their hearts for her. And that if momma can get some good night sleep it will help me too.

We also talked about her meds, and came up with the agreement that she will not even think about taking them and will just pop them in like she use too. She told me that she did not like taking so many meds and she thought she was taking a lot more than she did after transplant, so we got her list out and went over it and she saw that really there are only two that are different. Some have been replaced so we did not count then. I also explained to her ow a lot of the kids at school thinks she is awesome cause she just pops them in and takes them with no problems, and some of the older kids have problems with even a tylenol.

I really think she and I made some lead way tonight. I will talk with Martha tomorrow about what we talked about and see what she thinks. We also talked some about how she feels about her brothers, and most of it is just the fact that they are boys and she is a girl. She asked if it was okay for her to feel closer to one over the other and I told her yes, but to know that both of them love her very much and she needs to love them the same. And she asured me that she does. She told me that she agreed with them that they all wished SL was closer to Neosho, but that we were very glad to have such good doctors to take care of her and who will make sure there is nothing wrong with her to the best that they can.

We talked some about rejections and she feels that it is okay cause it will be another transplant. I talked some about what if they could not do another one, and that she did not like. I explained to her that she needed to make sure that her whole body was in good shape IF we ever needed that, I talked about her kidneys and how important it is for them to work good because of the way a lung transplant and all the med are afterward. I explained that the kidneys are like "coffee filters", it helped give her a visual image. And that all the 'stuff' that our body does not need after it absorbs the nutrient goes through the kidneys and the bad stuff is filter out and then we pee. I think she understands more about it. Because, after she told me that she knew that she needed to start drinking more the help them work, just like the water goes through the coffee filter. The grounds are left behind and thrown away, but the coffee is there to drink.


I also let her know that sometimes momma worries too much too and if I talk about it with someone I feel comfortable with it makes me feel better too. It helps me to be able to relax some more. She did get me though when I told her that I don't know what she is feeling, she told me, "But, I thought you always say, 'mom's know everything'" lol

Well that is about all for now. Thank you all for your prayers and please don't stop.

Until tomorrow

Lori

Oh I want to say Hello to Grandma Perkins :-) don't forget to sign the guest book

Tuesday, April 8, 2003 9:59 PM CDT

Day 9

Good evening.

Things here are cold, at least out side. Just wanted to do a quick update on what is going on here tomorrow.

First thing in the morning Christina is having her bronch and then sometime tomorrow she is to have a PET scan of her belly again, just to make sure nothing was missed. She has had a okay day today.

I have also talked with one of the residents and a diffent psychologist this after noon, and I really don't feel like discussing it all right now, but I do request that you pray for me that I would have the wisdom that I need to make the right choices. Sometimes when we are here it seems like the world stops and things really become complicated. Maybe more so than they really are. I have several issues I have to think on and some deep looking inside. I can't express it enough how I need the prayers of our friend and family.

It was once told to me when I started this roller coaster ride with Christina and her daddy, that sometimes we just need to rest in the knowledge that others are praying for us when we feel our prayers are on the rebound. Well that is how I am feeling right now and I need to know that I can count on the number of supporters that we have that you will storm the gates of Heaven for me. I know someone somewhere will have the faith that it is going to take to move the God.

So until tomorrow, when I will hopefully know more what is going on

Lori

Monday, April 7, 2003 9:58 PM CDT

Day 8

Good evening everyone

Today was an okay day for Christina, though she is still vomiting and feels sick to her stomach from time to time. She is also sleeping quite a bit too.

I did find out who stopped her Regelin(sp) and the doc told me why, it was because some of the problems she was having on Friday could have been related to it. I guess we will see, she was on it 4 days before any problems and it was started again yesterday.

Dr. DelaMorena was in this morning before she left for Austria (Europe) for the international lung transplant conferance. And we went over the game plan again. If the infection in her line is not cleared up and will have to have it taken out and then have a pick line put in for at least 48 hours and then once the infection is cleared up then she will get another port. Then hopefully we will be able to start the ATGAM sometime next week.

This morning also, the new GI doc came on service and he told me that he was going to look over all the test that have been done, to see if something was missed. And then he will deside if we would need to redo the test that have been done when she was last here.

On Weds. she gets her bronch and then we will know if there is any infection in the lungs, also to see if there was any acute rejection. I will let you know when I know.

She is also starting PT everyday

So until tomorrow.

Lori

Saturday, April 5, 2003 2:47 PM CST

Day 6

Good afternoon

Sorry I did not update last night, it was not a good day for Christina or for me. Thankfully today is better.

However, Christina is starting to vomit again. For whatever reason the nurse did not know the Regalin IV that she was getting was DC'd. She was going to find out. It seemed to be working, she had gone a total of 36 hours without any vomiting.

The question I have now is how long will they wait until they do something about her eating. She has not eaten since last Sunday afternoon and that she threw up. I questioned her nurse and she was going to find out for me.

As I said yesterday was not a good day for Christina, I am still not too sure what was going on with her, but she was drawing her shoulders up and her head down and at one point her right arm was drawn up also. A CT was done of her head, and it was normal so what ever it was it kept going on all day long. That and she slept all day. Today she is much better thank GOD.

Yesterday evening I lefted for a little while to do some laundry and when I came back the doc told me she was having a fit that I was gone, he tried to explain where I was but that was not helping. When I went into the room she was next to screaming for me. I have never seen her this way, she was crying so hard. I am very upset that no one called me at the RMH or on my cell phone to let me know what was going on. I will be address this issue on Monday when all the Regular people are here.

Last night I was already stressed to the max and by 10pm I was ready to do some major complaining about her evening nurse. She was a float from the NICU, but when I realized that Christina did not have her meds by 10 I questioned it, she was paged, and took her time to answer it, but when she did come to the nurse's station, she was like all she gets was tylenol and bendryl before her Vanomyocin, right. DUH, she did not even read her chart, I was so upset, I said NO, she was due for her immunospressoin drugs like 2 hours ago. Then she picks up a chart and starts looking through it and finally realized she had the wrong chart. All I can say is "IF NOT FOR THE MERCY OF GOD" I don't know how I would make it.

Well, there really is not much more right now, I will update if anything new happens.

OH I almost forgot, she did have some changes on her VQ scan, in the way the air flows through the lungs there were a couple areas that showed problems.

So until later

Thanks for stopping by hope you all have a great week, and if you feel like it send Christina a card, I usually don't ask for this, but I know it will help keep her encouraged.

Thursday, April 3, 2003 9:22 PM CST

Day 4

Good evening

Well we finally have a game plan and I am not happy with the out come of what is going on.

On the good side, she has done very well with the IV meds that are helping with her vomiting, she has been nausiated, but has not thrown up at all today.

. I have a little meeting with Dr. DelaMorena this evening and we set a plan now.

As you know that Christina has an infection in her port, we are not sure when and where it happened, it was accessed at home and then several times here in the ER and then while on the floor. I can't remember the name of the bacteria, but it is one that everyone has on their skin. We had to hold the vancomyocin for a couple doses because her blood levels for it was too high, we will draw labs again this evening and then at 2 in the morning and start it back up. This will run for 14 days.

Now as for the other issues, meaning pulmonary, Christina did PFTs today and was down by 20% since her last pfts done here. Tomorrow she will have a Cat scan, chest x-rays and VQ scans. Next week she will also be having a Bronchioscope to look for acute rejections and infections.

After the vancomycin is completed the plans is to start the Atgam, this will be a 10 day course. The only thing is if the GI problems are not totally cleared up we may have some problems, seeing that the Atgam will wipe out her T cell and make her at greater risk for greater infection. We will not really know if this will happen until we do it.

Dr. DelaMorena feels that she has not other chose but to proceed as we are doing.

I was not shocked by all that she told me, I knew that Christina was going down. When even walking from the parking lot into the church she would get winded.

I have not told her yet that she will be here for a while. DelaMorena did say that if she is doing better by the end of next week, she maybe able to get out for 5 days, still on the IV's. This will give her a break from the hospital before starting the Atgam. Though there is no promise that this will happen it will all depend on how she is doing then.

Well I guess that is all right now. Her spirits are good, and she is so much like herself right now, I can't be happier.

(Okay, I can be if she was not sick at all and we were home........but for now I am happy with the way she is feeling.)

Got to run, I will update more later. Thanks for stopping by and remember to let us know you have. I see it in the numbers, but to read that you signed the guess book encourageous us.

God Bless

Lori

Wednesday, April 2, 2003 8:40 PM CST

Day 3

Good evening.

Last night was a long night. It seemed no matter what they gave Christina to help with the vomiting it did not help. It only made her sleepy. Even this morning it was like that, and then finally they found something that seems to be working. I am not sure what it is called, I will let you know when I remember.

Some of her blood cultures are coming back. The culture from her port came back with "too numerous to count gram stain positive bacteria" in other words she has a line infection and has been started on Vancamyocin (sp?). With this came the reaction known as Red Man syndrome. She turned red in the face and bloches on the neck chest and back, some benadryl helped and the second dose was given slower and she still reacted so the next dose she will be pre-medicated.

She has slept most of the day and is very pale looking. She did go outside to the garden a little this afternoon and then after dinner (which she did not eat) to the play room until the reaction to the Vanc. Now she is in the room watching Disney and almost asleep. I think she has actually slept more today then she has been away.

I will let you know tomorrow if I know more and how she is doing. Thus far out side of a little crouchiness she is feeling fine.

Until later, and please let us know that you stopped by

Lori

Tuesday, April 1, 2003 1:06 PM CST

Day 2

Greetings from sunny St. Louis. Well Christina is back in the hospital, again. She arrived here yesterday afternoon, via ambulance. She, as you know, really never quit vomitting but but Thursday evening she was doing it more and then by Sunday she was vomitting a lot more. Also, her port had been accessed and it was not working so I took it out and then Doctor Wheeler tried to get it working again and was not successful. Once here in the ER they tried three times with no success, however, thank the Lord, we got it going this morning.

We are basically starting from ground zero again with her, she is not eating, or does not want to eat, and she has thrown up enough that she has irritated her throat and is having some blood now and then come up.

Her spirits though are very good, she is her old self even with the nurses. Even though she has been a pin cushion since yesterday morning. She has been poked somewhere around 15 times, so we were very happy that the port started working. I only hope it keeps working.

Well I really don't know much right now, we are waiting for the GI doc to come, from what I told, the one that is on service is like the best, and even has a special clinic for kids with problems that no one else can figure out and he has been know to come up with answers. THANK GOD

I will update daily and let you know what is going on

Thanks for stopping by

Lori

Wednesday, March 26, 2003 11:41 PM CST

Hi everyone

Well we are still HOME!!

This past week has been busy and it is not slowing down much right now. But that is what keeps things interesting around here.

Christina is enjoying physical therapy. It is interesting to see some of the 'older' people's response when they see her working out right next to them. I was not too sure how she would responde to it. Though she still tries to get out of doing some of the work out. Christine her therapist is pretty sharp, though she says she is going to spoil her a "little". We will see.

Christina is still vomiting some, usually if she does not do it by early afternoon she makes it through the day. She is trying hard not too vomit, and she makes sure she tells me that everytime. I realize that she is going to do it and sometimes she just is not able to help it. So I tell her that is okay, just that if she does not make it to the bathroom or her "pail" that she has to clean it up. She does this with no problem.

I am going to question the GI doc when we are there about the masses or whatever they were in the stomach and to see how we will know, outside of another endoscope that they are clearing up. I am not to sure if they are. There has to be something going on for her to vomit like she does. We will see next week.

Her PFTs are holding in the low 50s and 40s, she did hit in the 30% once, but she went back in the to the 40s, the only thing I am not to pleased with is the numbers for the lower airways are starting to hit in the teens more than before and these numbers use to run in the 90s. But for now I am trying not to worry about it and just hold off and wait till next week when she sees Dr. DelaMorena.

Christina is also seeing a counselor and she seems to like him. I think he is going to help her. She is actually talking with him. I am so glad. He truely believes that she is depressed to some point, she talked a lot about loses the last time she was there. From neighbors with a collee that moved away to some kids in school who left the school and one of the boys who died, like 5 years ago, to her father, who past away 7 years ago. He wants her to bring in a picture of him the next time she goes. The bright part is she talkes about what she is hoping to do in the future and all of that, she told him that she is going to be a nurse practicioner, and she wants to work at Children's on 7W.

Well I guess that is all for now, tomorrow we have PT and hopefully I can get some family pictures done, and then Friday she sees Dc. Wheeler for her port to be accessed for SL. So until later

God Bless

Lori

Saturday, March 22, 2003 7:23 PM CST

Okay let me try this again, I just lost everything I wrote. :-(

This week has been a very bust one since we have been home. Christina is seen the psychologist and the physical therapist and we have gotten the two started, with PT three times a week. I is interesting to watch all the 'older' people's response when they see her walk in the rehab gym. She likes it so far, though if she has her choice she would never do the tread mill only the bike, but here she does both.

She is still thorwing up some and not always with her meds and she is doing a bit of coughing now too. So we will see. I am not worrying about it now. We go back to SL on the 1st. And she will see Wheeler on Tues.


Next week promises to be busy again. I we have to be in Joplin everyday except for Weds, for appointments with Dr. Wheeler and then with Dr. Hickey and then for physical therapy. PT is 3 times a week. I think is the point where I need to say "CALGON TAKE ME AWAY"

Today we had Stephan's 8th birthday party, he ended up with $41 and I told him that now that he had money he could buy my birthday present since I bought him one. You should have seen his face, I wanted to laugh so hard, but instead I acted all sad and pouted about it. Not that it did me any good. lol I think he had fun, we got a Twister game and that in itself was worth several laughs. Those kids have no balance, and they would yell out when some one else's bottom ended facing their faces. I was almost in tears.

Well I guess that is about all, of course the first update was better, but this is good too. So until later

Love ya'll

Lori

Lets keep out troups in prayer.

Tuesday, March 18, 2003 11:46 PM CST

Day one

We are home, yea. I just had to put the day on the top, ;-)

We got home around 3 this afternoon, and it feels so good. I can't wait to go to bed and to sleep in my own bed. I honestly do not know how I made it when we were there after Christina's transplant. This was the longest time there, when we got home it seemed like I was gone forever. Anyway it feels good.

Christina is doing good too, she threw up a couple times this weekend, and some this morning and it was even before pills, she was nasuated even before we got to the hospital for lab work. But once she did it she was fine. She slept just about all the way home. I work her up for lunch and then when we got to Springfield and again when we got to Joplin. She was excited to see the kids at school, though most of them were gone when we got there. But she got to see Calah and Chrisbeth and Kemberleigh. Also at church tonight, she was her 'normal' self. I am so glad to see that.

Okay here is the run down on what the next two weeks hold. Tomorrow she sees a Dr. Hicky (sp?) he is a psychologist, and then hopefully we will have PT on Thursday and then lab work on Friday. After that she will go to school and I will be taking the boys (Lord willing) to Branson, I was going to go to Springfield but Brason will be more fun. On Saturday she again will have PT. (this is all if it gets set up) Then next week spring break starts so no school. On Tuesday she sees Dr. Wheeler and then PT, then on Thursday she again will have PT and on Friday she will need to be accessed and we will leave for SL again on Monday the 1st of April.

When we get there she will see GI docs, Dr. DelaMorena and have a pulmonary eval, and then she will see Dr. Sewings.

I have had several ask me about the ATGAM and if and when we are going to do it. I do not know. Dr. DelaMorena wanted to get everything worked out and then she will be able to deal with this. I am so thankful for all the special people at SL that have helped us this last month. I don't know how some people handle things without a good medical personel backup. That and of COURSE the Lord.

I witnessed first hand this last weekend how people can become when they are without GOD in their life to help through the stress times, when everything seems to be falling down around you and you feel as if your world in caving in. I can honestly say that if it were not for the mercy of the LORD, I too might be where this young mother is. I am so grateful everyday for His mercy and care.

Well it is late and I am so ready for bed. I will try to give you an update tomorrow night on her appointment and all.

Until then, GOD BLESS

Friday, March 14, 2003 10:22 AM CST

Day 25

Good Morning from SLCH

Well this is the day!!

Christina is finally being released form the hospital. We will stay over the weekend in SL and then she has her neuro psch eval on Monday afternoon and then we will go home on Tuesday.

I can't believe we are actually going, it seems like forever since we have been here. How did I manage when we were here for transplant..

Christina's spirits are good and she is looking forward to going home too.

Now for you who are in Neosho, or around us, don't tell the boys, but next weekend I am planning on leaving Christina with a friend and taking the boys to Springfield for the two days and one night. We will more than likely do the Bass Pro Shop and then Chunky Cheese for Stephan's B-day. Which is the 22nd. I can't believe my baby is going to be 8 yrs old. A lot has happened in those 8 yrs.

Well I got to run and finish packing up things. I will update more than likely when we get home. So until then.

Love

Lori

Wednesday, March 12, 2003 10:16 AM CST

Day 23

Good morning. Today Christina got the NJ tube out. This was not a medical choice however, she threw it up.

She has been coughing quite a bit this morning and when she was brushing her teeth she was gagged and start throwing up, and then the tube came out quite a bit and she was ready to push it in, of course I stopped her and her nurse came and and took it out. Dr. DelaMorena was not upset by it and to be honest I was not either, I don't like her coughing with phelm like she has, but it is not too bad. She looks a lot better with out that silly tube hanging form her nose. Her only complaint is that her face stings where the tape was to hold it in place.

Tomorrow she is going to go with a friend to Libby Lu's,a place in one of the malls here and get a "make-over" it will be more fun with out the tube that is for sure.

As soon as I can I will try to get pictures on from that, but I have to get the scanner working at home first, and of course we have to get home first, but if things are moving like they seems to be that will not be too long, maybe next week sometime.

Well I know this is short but I thought I would stop by

Lori

Tuesday, March 11, 2003 10:14 PM CST

Day 22

Greetings still from SL

Well I think we finally have a plan to help Christina get through this slump she is in with her meds and eating. She was told today, by a couple doctors and our social worker that if she did not make an honest effort and try to change her behaviors with her meds and vomiting that I was going to go home for a few days. Boy, she did not like that, and so far she is doing okay with it. She totally understands that she is in CONTROL of her behaviors and that she has to keep in control.

We also talked with her about her telling us how she feels, whether happy or sad, and if she is having a hard time with her meds, then she needs to express how she feels and such. We can't read her mind. She seems to understand where we are coming from.

Today was a good day for her for the most part, she finished all her school work and took her meds without any complaints the first in several weeks. I think we might have found the answer. I also think that it is going to help her being on the antidepressant too.

I also, kind of got mean with her this morning, I told her that she is no longer allowed to stay in her PJs all day and that she is to get dressed, and she can not watch TV until 5ish and that she is not allowed in the bed until bed time or if they are looking at her or if she is getting iv or something.

I hate to be mean like this but if it is the only way to bring her out of this, then it will be worth it to me to get my little girl back.

As for the ATGAM we are not going to do it at this time. Her lung functions are holding their own and have not dropped in the time we have been here. Also, ATGAM has it own set of problems and we need to be totally over this before we even try to start something like that.

Well I know this is short, but I just wanted to stop by and let you all know what is going on. We maybe getting out of here sometime next week. We will see.

Thanks for stopping by

Lori

Sunday, March 9, 2003 9:08 AM CST

Day 20

Good Morning

Well things here are going, just not sure where. We are still working on Christina taking her meds. For the most part she is doing good with them. However, we are starting using pills on some, each day she gets a new pill. Today was her calcium w/D and she did not like it and was trying to throw it up. But, it did not work, she did spit one out and we just got another and she took it.

Last night she took her meds and did good with them and while the rest of them were going down her tube she throw up all over the place. I don't think this was related to her meds, seeings how she did not fight them going down or had time to work herself up about them. So we waited a little bit and started all over with the pills and the liquid. This time she did work herself up and with only the two cyclosporines down she threw up. So we went for a third time, (you know what they say, the third time is alway a charm, or something like that) So she took them again and this time they stayed down.

One of the issues we are going to be addressing soon is the fact that she is not really eating or drinking. Dr. DelaMorena made a comment to her yesterday morning that she needed to eat. I don't think it did much good. This is what her food intake yesterday was: 3/4 chicken strip, 4 french fries, 1/2 of a sm. serving of nachos. That is it. We have even tried to get her things that she usually likes, but she still does not eat them.

Well we have not seen the doc this morning yet, and Wait she is there right now, brb

Back, see it was not long. So for today DelaMorena wants to start working on the eating, She gave Christina a "chore" and that is to remember everything she eats for the day. And tomorrow she will do PFTs (Pulmonary Function Tests).

I believe that Christina enjoyed her brothers being here this weekend and Kemberliegh (she is a friend), though I still think she was a little distanced with all of them. She is almost in her own little world anymore, not sure why. Maybe once we start the anti-depressant things will change. This is an area that several of the medical staff is working on.

Well until later, I guess I will go

Thanks for stopping by and don't forget to sign the book

Lori

Friday, March 7, 2003 12:28 AM CST

Day 18

Sorry that I did not update yesterday, there really is not much going on. We are working on Christina taking her meds and it seems to be working. I also talked with her Social Worker, Martha about some things.

She may be started on anti-depressants, which I for one think that it will help so much.

Right now her brothers and a friend, Kemberliegh, and her 'Nanna' are here, and that seemed to help her spirits some, though she still is not totally her 'old' self. We are planning whenever they get the pass filled out to go to the St Louis Children's Musuem. Believe it or not htis is one place that we have never been an dit looks like it will be a lot of fun. I already told Christina that she is going to have to do a lot of walking to which shewas not too happy, but I am not going to take a chair so she will have to do it.

I am not sure if I mentioned that her hip X-Ray looks ok, it did show some more bone lose but nothing is broke,etc. I tink she just pulled her muscle and with therapy and such she will be fine, though I think she feels likes she will die. Oh last night she fell out of the bed, that is right, I was not here and I guess some how she was trying to get out of the bed and then got stuck or something.

Well Until later to night when I can really let you all know what is going on,

Lori

Wednesday, March 5, 2003 7:04 PM CST

Day 16

Good evening.

Well Christina had an X-Ray of her hip, and I still don't know the results of it, and neither did Dr. DelaMorena, when she was down there to look at them they weren't ready so she looked at her past X-rays of her hip area.

We have a game plan to help Christina keep her meds down starting tonight, she has a set time (set by her nurse) to take her meds and she has to keep the down, and when she does she earns a sticker and for every two stickers she get, she get a prize from Kimberly and Child Life. Over the weekend she can save her stickers and get something large on Monday. We will see if this works. She is still going to be taking most of them via the J-tube, and hopefully by this weekend she will be taking them all by mouth. Then comes the fun part of going to pills.

The GI docs came in and I asked them how do we know if the masses are going away and he said short of another endoscope we don't, so in a week or so she will have another endoscope to check on that. They still have no idea what caused all the problems or these masses. The mystery continues!

Her spirits were pretty good today, I even commented to her that she seemed to be in a good mood today, and she looked at me like "DUH"

She is still not eating or drinking a lot, but DelaMorena is not too worried about that yet, we are watching her blood levels and making sure she is not dehydrated or anything. The main concern is the meds. We are going to try anything and everything to get her to taking them again, anything to keep from doing what I called the "Belly Button". Christina never really had problems taking her meds so this is all new, she freaks out even over the smallest of pill or liquid. Time will tell.

One thing I know is that I am about as bored as a tick on a chicken in winter. I think I am going to have my scapbooking stuff brought up to me. If we have to be here, I guess I can destress with that. That is what got me through her transplant and the time we spent here in SL. So hopefully it will work again.

So until later thanks for stopping by and THANKS for signing the guest book.

Oh yea, we are on roomate number 5. They come and go and here we still are.

Tuesday, March 4, 2003 10:28 PM CST

Day 15

Well the day is about over and we maybe moving to a new room (hopefully one without a roommat:-)

So this is what I learned this afternoon. Christina will be going to physical therapy everyday, and tomorrow around 11 she will be seeing the psychologist and then getting ready for the neuro eval.

For some reason her right leg has been hurting all day. She can hardly put any weight on it. I am not sure what is going on with it. I will most diffently make Dr. DelaMorena aware of it tomorrow.

Christina also got her pizza this after noon and was so happy to have it. Though she only ate one slice and the topping off of another, stil it is a high calorie food. Even though that a bag of chips and small cookies is all she had today to eat, she was not "hungry".

Well I guess that is about all for right now. Oh her brothers are coming up her this weekend, actually on Thursday. She is looking forward to that.

Until tomorrow

Lori

Tuesday, March 4, 2003 2:18 PM CST

Day 16 (I think)

Good afternoon

Wel here we sit still and from what Dr. DelaMorena says it is going to be a lengthy stay. We need to see how Christina is doing from all angles, she is starting to throw up her meds again, and we are stillnot sure why. I believe it is an emotional thing, she looks at them and starts breathing hard, I know she is trying but she can't seem to handle it, so as of right now all meds, except the Cyclosporine and the Imuran will go into the tube.

Dr. DelaMorena really does not want to do a perm tube in her bely, but if it looks like hta tis the only way for her to get her med, which are hre life line, then we will have too. She is still waiting for the neuro-psch dr, Dr. Keene to get back with her. She start PT at 3:00 this afternoon.

To tell you all the truth, I am so wore out from all of this, I don't know how it is that I am not going crazy. Actually I might have been there and back, who knows.

Well I know this might make absolutely no sense but Oh well, I will update some more later,

Oh she is getting a stuff crust pizza from Dr. DelaMorena this afternoon, anything if she will just eat.

Later

Lori

Monday, March 3, 2003 9:36 AM CST

Day 15

Good morning

Talked with Dr. DelaMorena this morning. We are going to try to get Christina to take all of her meds by mouth today, even the ones she is getting IV. Hopefully this will work. She also is going to have her talk with one of the Child Life girls about taking her meds. The thought is, and it is a good one, that she is afraid to take them because of all the vomiting she has been doing. I know just thinking about taking pills (a lot of them) after all that vomiting I would get nervous too.

As to the question of ATGAM, Dr. DelaMorena says that we are going to wait a little bit and make sure we know what is going on with the stomach. If there is still irritation or infection there then giving the ATAM will just make it worse. This too makes sense seeing how it will attack her T-Cells and make her more likely to get infections. Also, we have to address the issues of her calorie intake, she still is not eating enough. I am not sure that she has even gotten 1,000 calories any one day this weekend, and she just will not eat breakfast, but then she really is not a breakfast kid.

Her spirits are doing good, she is her "normal" self. Right now she just left with Kimberly to go to the school room. I am glad that she is not feeling sick like she was when we came here. To mention the playrooom just was not something she cared about doing. Now she is even willing to go to the school room. I think part of that is that the teacher, Mrs. Donna will let her play on the computers, (educational stuff).

Well, I guess that is about all for now, I will talking with the doc as the day goes one. I know that with DelaMorena on service Christina will get great care, not that they others don't give her the best care, it is just that DelaMorena is her Main Doctor and she has a personal interest in Christina.

So until later

Lori

4:21pm

Not much is happening right now, Christina did PFTs today and they were basically the same as they were the last time she blew here, so that is good that they are not down. Her weight is still down by several pounds, so that might had something to do with it, I know the more the kids weigh sometime the lower the numbers are. Christina is also to start Physical Therapy tomorrow sometime. I still don't have an answer as to what the cause is yet, but I am sure as soon as the Docs know we will know too. And then I will let you all know what is going on.

And one last things, Calah, Christina was so excited about getting the package from you, she wanted me to go downstairs first thing and see if it was her. I had to convince her that they will bring it to her room when it got her. And of course they did, though she was in the school room when it arrived. Need I tell you that as soon as she saw it she wanted to change her PJs right away.

Well until later,

Love ya'll


9:44 pm

Christina received a pass to get out of the hospital this evening for 2 hours and we went to the Macarooni Grill with some friends from the hospital.

When we got back she had to do her meds, and guess what, she threw up what little she ate for dinner and her meds. We gave her her Cyclosporine and Imuran again, because these are the most important ones in the evening nad we are going to try the others again, and at worst we will put them down her tube. A couple of what she is taking had been IV meds, but we are trying to get her to take all of them by mouth.

Keep praying that this will all work out
good this evening.

Dr DelaMorena has talked with the neuropsych doc about doing another full evaluation on her to make sure there is not something that we are missing her her care. This will look at her emotional levels and her cognitive levels. And to see how the "tick" behaviours are affected her in everyday things.

Well that is about all there is right now, no more unti tomorrow, I hope to beable to get to sleep earlier tonight.

Till tomorrow Have a good night.

Just me

Sunday, March 2, 2003 11:11 AM CST

Day 14
Good morning

Not a whole lot is going on here right now. I think we are going to try to do some of Christina's meds in pill form today and see how she does with them. She has kept them down all weekend and seems to be doing great with it, though she stillhas a lot of coaching with taking the liquids.

Her Cyclosporine levels have been crazy this last week, I am not sure why, but plan to ask later today when the doc on call comes back in.

Christina was able to get out of the hospital yesterday for a couple of hours, she did fine with it too. She was not sure she wanted to go out in public with the NJ tube still in place, but I told her she could wear a mask and no one would even see it, she even decorated one to wear. Though when it can time to leave she decided that she did not want to wear one and did not care what people thought. So with some friends from E. Alton, Ill we went to the Galaria (sp?) Mall not to far from the hospital. I think she had a good time.

Well, I guess today we will just lay low, our roommate is leaving for the day and will be back this evening. I hope to be able to catch up on sleep while they are gone, that is if she is left alone for the most part, and I think she will.

So until later,

Just me

Saturday, March 1, 2003 10:41 AM CST

Day 13 (I think)

Good Morning. Well things are going okay, we have not vomited in since yesterday morning. This morning she KEPT her meds down, even though it took like over 2 hours to do them. The big question is going to be when she starts to take them all by mouth. Christina is still getting some of them IV and some of the liquid and through the tube.

I was talking with the doc on call today, who know Christina pretty well and he even thinks the she needs a perm J tube. Even if it is only for her meds, face it she needs these to keep her alive. Maybe it is just that her stomach can not handle them like in the past. And it is just going to get harder for her to take them if she knows that she is going to throw up with them. She hates it when she does that, and is still wondering why they were asking her questions about if she ever made herself throw up, I tried to explain it to her, but she thinks that is just gross to do that. :-)(and to honest I am glad she feels that way). I guess we will have to wait and see what Monday holds. Usually on the weekends there is nothing realy gong on her.

I went to the RMH for the first time to sleep last night and of course just as I was going into a good sleep the phone rings and it is Christina's nurse telling me that her port won't flush and not knowing her, she was wanting to know what size needle they use on her and if I had one, which of course I did. She told me that I did not need to bring it right then but in the morning when I was going to get there (like at 6). Well when I got here they had reaccessed her port with a 20g 1" needle and used some TPN (this is something that they use to help disovle clots in the tubing.) It worked, so they did not need my needle.

I still feel like I could sleep for about 20 days and not wake up, that would be a dream come true. lol

Dr DelaMorena starts service on Monday and we will know if we are going to start the ATGAM, I sure hope we do and then we will be done and get to go home. Christina is doing so much better, that I think she can handle it. We will see.

Well I guess that is all right now, I will update maybe later today or tomorrow.

Don't forget to stop by and see her pictures, she is beautiful.

Until later

Lori

Thursday, February 27, 2003 2:02 PM CST

********************NEW PICTURES FINALLY*******************
Day 11

Well the snow is falling once again here in St Louis.

Christina is doing okay, she has be diconnected from her IV pole. She still has her feeding tube and not sure when we will lose it. She has to try to get a lot of calories into her eating, though I don't think we are making it. She even turned her nose up at a shake, and it looked pretty good. But to get her to eat it or even drink something is like pulling teeth from a bull.

She tried to take some of her meds this morning, one that is mixed with juice, and she drank it okay, but with in five minutes it was back up and then some. So she got it through the tube.

Dr. Sweet came in and said that of course we still are waiting for results, and if she is not able to do her meds by mouth then he talked of placing a permiment NJ tube in her, this will not be in her nose however, but in her stomach, and she will have to go to the OR. (some of this stuff he did not have to tell me).

I still am not sure what we are going to do about the ATGAM. Dr. delaMorena came by this afternoon, of course when I just left the room to get some dinner. So she is suppose to come back by later, I am hoping soon, at least while she is in the school room, so we can talk.

Well I will let you go and update later tonight

Love yall

Lori

Wednesday, February 26, 2003 4:48 PM CST

Day 10

GOOD NEWS, NO PTLD PRAISE GOD!


So the question is, what is causing all the problems???????
That is the question of the day. It is possible that she contacted something and it just hit her harder than normal. We are still waiting for some lab reports, but Dr Sweet feels that if she is getting better, then that is GOOD.

The question is still in the air as to when to start her ATGAM. Sweet and delaMorena need to talk about it. If she keeps eating and doing good with that, we will lower her feeding tube feedings tomorrow and by Friday it can come out. She will keep the IV fluids going though, and we have cut her "poop" meds down in half.

Keep praying, I know that is the only thing that is working right now. And of course when Doctors don't know what it is then they say virus. But I know who is control of my litle girl. And I know HE will see her through all of these rough spots.

Well I need to go and will write more later tonight.

Lori

*****************10:49******************

Well not much more has gone on tonight. Christina tried to take cyclosporine tonight and she threw it up, I think she just got choked on it. So she received liquid cyclo in her tube. Her levels have been crazy this week and we are trying to get them were they need to be. But, if they are going to change her meds starting next week, then she will be off if it anyway. Although she needs it now. I am talking in circles I know. I am tierd LOL

She has ate some, but not a lot, and has kept it down, though she is needing to get some more calories, thus we are keeping the tube feedings going, I am not sure when they will stop them, hopefully tomorrow, if she will eat more food. I think she might be afraid that if she eats to much she will throw up, or that she just is not really that hungry. We will see as the week goes on.

My Pastor and his wife came up today, it is so good to see them and I was glad that he was here when Dr Sweet came into the room and told us the findings. Christina has a lot of prayer going up for her right now and I want to thank all of you for that, and you tell you not to stop.

Well it is late and I am going to go to bed, I was actually there when I got a phone call so I am up in the computer room, I did not want to disturb our "roommate", [they are here only over night and then we will be by ourselves again :-)]

Good night and talk with you all tomorrow sometime

Tuesday, February 25, 2003 1:18 PM CST

Day 9

Greeting from St Louis

This is going to be short right now.

We have managed not to throw up through the night nor this moring, thank GOD. She has not had anything going into her via feeding tube or nothing since yesterday morning, wondering if there is a connection.

She is scheduled to go for her PET scan in just a few minutes, hopefully this will give us some answers. If not then the CT will be done and if not then they will keep looking for the reason for all of this.

As for when we are going to start the ATGAM for her rejection that is still waiting to be answered, we need to figure out what is going on with this right now. Dr. Sweet did tell me this morning the he will not be surprised if it is not PTLD, but if it is we will just cross that bridge when we get there, one of the first things that will need to be done is to figure out what type of PTLD it is. And then the course of treatment.

I will update later today, hopefully with an answer.

Until later

ME

*************9:20pm******************
Well nothing to report as of yet. I asked Dr. Sweet if he had heard anything about the PET scan and he told me no, and that if there was something there that was bad they would have called him. So we still wait.

Christina was given permission to eat some real food tonight, with if she throws up then she throws up and she will go NPO again (nothing by mouth) she is going to keep getting her tube feeding too. She wanted a hot dog and mac and cheese, of which she only ate bites of the hot dog and thought the mac and cheese was gross so did not eat it. But, she has kept what she did eat down so far. Thank God.

Dr. DelaMorena came to see her this evening and I asked her if we were still going to be doing the ATGAM next week and she said she was not sure yet, we wanted to get whatever is going on under control.

Christina's spirits seem okay, she seems happy at times and then discussed at other times. But for the most part I think she is doing good. They are wanting another neuropsych evaluation on her, this is something that I knew about. I think since we stopped the Tenex, the med for hte tic like behaviors things have changed, her attention span is less and thus I think the mood changes are related to it. Dr. Reed one of the neurologist that has been working with Christina since she was flown here, says that when the body is under stress that these behaviours manifest themselves more. With all she has been through these last weeks I would say her little body has been under quite a bit of stress.

So again we wait to see what the results are, I guess the next step will be the CT and then possibly another endoscope with larger biospies, though I don't think Dr. Sweet really wants to do that. We will see as the days go by.

Well I guess that is all for right now I will update you (of course) as I learn more

Thanks for stopping by.

Lori

Help I need something to keep me from going stir crazy, I think I am about slap happy here tonight. Was going to go to Target, but it really is no fun to go by yourself. The expression on the turtles face to the left is what I feel like, :o}

Later

Monday, February 24, 2003 9:18 AM CST

Day 8

Good morning everyone. It is still snowing her in St Louis, though the sun is shining and you can see blue skies. It is to be very cold outside today, not sure what the temp is going to be, but it is not to get up very high, I think in the 20s or something like that.

Well, now that you all had a weather update here is one on Christina.

We are still waiting to hear about the test results, and she is still vomiting. I am so afraid that she is going to end up throwing up the NJ tube. Last night we re-taped in it place, however, the force she has when she is throwing up, moves the tube up and down.

She is feeling pretty weak this morning, so keep her in your prayers today. I am trusting God to come by any minute to touch her completely. I know He CAN do it.

I will let you all know when I hear something, remember to just scroll down the page and look, I usually will change the color of the font or background when I update so it will be easy to see.


Thanks, and until later

ME

******************1:00******************

Well I have talked with Dr Sweet and he feels that a PET scan should be scheduled and has been for tomorrow sometime. This will help them to see any cell division that occurs with what we are looking at, it all seems very hard to explain right now.

Also, if Christina does not use the restroom (BM) after some "helps" them she will have to have a lower GI study done. So far it has been well over a week.

I guess that is all for right now. All I know is I am tierd of waiting for answers, when I know when we do get the results if it is what they think it is, then they don't know what to do, cause to treat one can increase the other.

KEEP PRAYING

*******************8:45*****************

Evening everyone

Well here is the final update of the day.

There is nothing new to report. I still don't know what is going on and neither do the docs. She has slowed down her vomiting again. Hopefully it will stop. She finally went to the bathroom, of course they wanted a sample and well they did not get it. There fault. I was gone to the RMH to do laundry, etc.

I am not sure as to what time the PET scan is going to be, but when it is done I will do an update, unless something else happens between now and then.

Have a good night, I hope we will have a quiet one.

God Bless and thanks for stopping by

Lori

Sunday, February 23, 2003 8:59 AM CST

Day 7

Good Morning

Yesterday was a pretty good day, Christina even felt like going to the play room to paint in the afternoon.

This morning; however, she has started vomiting again. I hope she does no more, we do not want her to throw up the NJ tube, I am sure she will not like it and will fight another going in. She had no warning about it coming either. That always makes her a bit upset, cause it means cleaning the bed and changing clothes, not to mention having to take a "bath". Not that she does not like bathing, it is the sponge baths she hates. She was glad for the fact she was able to wear her Mary Kate and Ashley PJs that her friend Calah gave her. [I am glad I got them washed yesterday :-)] But she managed through all of that is is now resting comfortably watching Disney (of course).

I will update more this evening. Remember to just scroll down to keep reading.

Thanks for stopping by and have a great day!

Lori

Hey well it is 9pm and Christina is still having vomiting spells, she is complaining of feeling dizzy, like she just finished spinning around. ???? she is laying in bed, so why she is feeling like that ?? we don't know we will just watch and see.

We still do not have any answer as for any test are concerned. The GI doc told me that they are going to do the CT tomorrow, and then if needed they will do another endoscope and get larger pieces for the biopsy. He told me that they basically just scap some tissue cells and look at them. But sometimes they need bigger tissue pieces. The reason they don't like to get a larger piece the first time is the risk of bleeding, etc. So I hope tomorrow we will have some answers.

It looked like turning down the volume of the feeding pump was the answer to her throwing up, but I guess we were all wrong. I hope she can sleep tonight, last night and the night before she did not seem to sleep well, she was moving around a lot, and usually she sleeps through even the nurses coming in and bugging her for B/Ps and temps, etc.

Well, I guess that is about all there is right now. I promise to keep you all posted.

Oh it started snowing here around 6ish. I know at home they are really getting some snow, in just a couple hours this morning they got about 4" and last time I talked with people from home it was still snowing, so I am sure the kids will have fun tomorrow staying home. Christina's brothers have already been out in it playing. They love it and I think if they are allowed they will play in it until they are frost bit. I am glad they are having fun. It is hard to be away from them so much. They are so strong. SO if anyone from home is reading this give them a hug for me when you see them and tell them it is from me. Thanks

Well got to go, talk with you soon

Oh Calah sorry she "hung" up on you. She will try and call you sometime tomorrow if she is up to it okay. BBFF you and her as she tells people---love ya

Saturday, February 22, 2003 9:49 PM CST

Day 6

Good evening everyone.

Well I have no news. It seems that it is going to take until Monday to get the lab results back from the biopsy. I am biting at the bits to get an answer.

She is scheduled to have a CT with contrase on Monday to confirm what the doc saw. They are going to use two types of contrases this time. I am not sure as to what time they are going to do that on Monday.

Christina had to get poke tonight for a cyclosporine level. Her level this morning was 635 and they want it to be b/200-250. The question is whether or not the cyclosporine is sticking to the iv tubing and that is where they are drawing her blood from so we had to get a poke to see what it is this evening. She is not an easy stick, she has to have 4 pokes, and they almost went to the feet, she was not happy at all, but she is doing fine right now, I asked her if she was happy and she was, I think part of it is because I am letting her watch Lizzy McQuire, before she turns in for the night.

Well I guess that is all right now I update more tomorrow if anything changes.

Thanks for your prayers and for stopping by

Lori

Oh here is a good friend of Christina's web site, she will be two yrs on the 2nd of March and is doing great. Check it out and tell her hi.

Friday, February 21, 2003 12:59 AM CST

Day 5

Christina is back from the OR and is doing okay, she has an NJ tube in right now, this is a feeding tube that goes past her stomach into the opening of the intestines. We are hoping to be able to give her some "food" this way and some of her meds that are in a pill form only, we will be able to crush them.

Now for the test. It did not look good, there is a lot of thicking in her stomach and small intestines, and several masses. What these are we are waiting to hear, they can be from infection, via virus, or tumors. I feel that the later is what is believed them to be. Thus we are looking at PTLD (Post Transplant Lymphoproliferated Disease.) We hope to have some of the results back later today, late afternoon, if not in the morning.

Christina is not happy right now having the tube in her nose and down her throat. We asked her if she was able did she want to go to the play room and do crafts, she did not feel like it. I think I might beable to get her up there if the docs and nurses think that is okay.

Right now all of the transplant doctors are in their weekly meeting and hopefully we will have a new came plan on what to do. IF it is PTLD the proticol would be to reduce the immunospression and treat it. However, with her having rejection already we would be asking for more problems with the lung issues, so it will be interesting to hear what the decissions will be.

If it is PTLD, I am not planning on talking with Christina about it right now, she knows it is cancer, and I fear what she will think, I know the first thing in her mind will be her daddy, like when I told her about her grandpa having a heart attack the first thing she wanted to know what if he was alive. (her grandmother died from a heart attack). I will be talking with her social worker and Dr. DelaMorena about this and how and when she should be made aware of everything that is going on.
I will let you all know when I know.

And PLEASE KEEP PRAYING.

Lori

Thursday, February 20, 2003 12:51 AM CST

Keep scrolling down to see latest up dates

Day 4

Well, she seems to be doing okay right now, as long as nothing goes into her mouth to swallow or she is not moving around to much she is not throwing up. The good news is that there was not blood in the vomit today, it was very high in acid, but no blood.

We are waiting to see if radiology thinks that there would be enough contrase from the GI study yesterday to do a cat scan, if not then the question is will her kidneys be able to handle the contrase that is needed for the test? I have not heard on that yet. Also they are trying to get her scheduled for an endoscope, and the way it looks it will not be until tomorrow. But we will see.

She has two pills that she needs to take and after two tries this morning she has not been able to do it. I am not sure what we are going to do. The question was raised as to if another spinal tap would be needed and that is yet to be answered but I should not be surprised if we do it.

Well that is all right now, I will let you know how things go later in the day.

Thanks for stopping by

Lori

Okay, Dr. Sweet just left the room and the game plan is, tomorrow she will have the endoscope sometime in the morning. She did an ultrasound of her belly this afternoon and it was fine as was the x-rays.

She is feeling pretty good right now, she actually got a popsicle down and it is still down. So we are going to try clear liquids tonight and see how that goes. All she needs now is some color in her checks. This morning when she was laying in her bed, she was wearing white and the sheets and blanket are white and she looked about as white as they did.

I will keep you posted

Oh I talked with Dr DelaMorena and we are still going to be changing her meds out, as to when, first we need to figure out what is going on here. I will not be surprised if they don't do it next week instead of waiting, but who knows.

Wednesday, February 19, 2003 8:27 PM CST

Day three

Well today Christina continues to vomit. The docs did an upper GI or tried too. She was vomiting the Berium contrast, so they inserted an NG tube and she still was vomiting it. Tomorrow the plan is to have another obstructive series ran, this is with x-rays. Then she is to have an endoscope done as soon as it can be scheduled. Then another Cat scan with contras of her stomach.

For the most parts her spirits are okay, I was worried for a while today, she was throwing up very hard, and was starting to hurt from it and was not happy. Can't say that I blame her. She finally went to sleep and slept until it was time for the GI study. Then she was no happy again.

Right now she seems ok.

I am not sure how long we will be in the hospital, at least until this is figured out. Then we are to start the immunospression change, I am not sure how all of this will play into that change. Please keep praying.

They are talking about starting her on TPN, this is an IV nutrients suppliment. She has not eated since Sunday night and that she vomited. And she really has nothing to drink, she was trying small sips and even ice chips, but that was not working either, as soon as it went down it was up, so today she went NPO or nothing by mouth. She is getting her meds via IV now.

Well that is all there is right now. If any wish to send her cards, I am sure that will encourage her. We were planning a shopping trip and pictures with her friend Calah, however, that is not going to happen this weekend. Sorry Calah, we WILL do it though when we get home, PROMISE.

Thanks again for your prayers

Lori

Wednesday, February 19, 2003 0:21 AM CST

Evening or morning

Well, she is resting good.

The doctors still are not sure what is going on with Christina and why she is throwing up so much. They did an obstruction panel (x-rays) and it did not show much, they drew labs and are running test on urine samples, of which I think we had to literally scare the pee out of her. In the last 48 hours she has only gone approx, 150cc. She is now getting iv fluids to help her rehydrate. In the morning if she if still throwing up I am almost sure they will start her on iv cyclosporine. She has been throwing up her meds for the last two days. It will be interesting to see what her levels will be in the morning.

Doctor Sweet is wondering if there is not a psychological reason for the vomiting. Christina seems very moody at times, and when questioned, she has no answer. Both he and her main doctor have tried to talk with her by herself and both have not come up with any answers. We know that some of the meds can lead to depression, and the question is, "is she depressed". Since we have stopped one of her meds she seems happier to me, and not as moody, however, she is still wanting to cry at times for no appearent reasons. Tomorrow morning she is going to spend some time with Kimberly, the child life person, and see if she can't talk with her. Kimberly is great with these kids. And really if you stop and think about all she has been through in the last several years, I might even be depressed.

I had a friend ask me how I am doing with all of this and I would have to say, I really don't know. I am trying to be strong for Christina, and I want to protect her from anything that will upset her, but there maybe somethings I can't. And for me that is the frustrating things of all of this. I know she can pick up on my worries and sometimes no matter how hard I try to hide them I know they show in my face.

For right now we will have to take it day by day, and just keep trusting God for the answers. There comes a point when only He can fix the problems, no matter how awesome the doctors are. I have no doubt that she does not have have the best doctors to care for her, but even as DelaMorena said she is not GOD. I know they have to trust in Him to help them find the answers.

Oh before I forget to tell you about her party. It was a lot of fun. I think she had a time of her life. The day started with picking up Calah, her friend, and then going to Jamaca'mehot to get her hair all fixed up, she looked beautiful. Then home to get things together for the party.
Doctor Wheeler she really thought it was cool that you and Sally were there. She (as all the kids) enjoyed having him there. Then it ended with Calah spending the night and the two of them doing some fun stuff, and having fun making Christina's older brother choose which he liked better, her or Star Wars,,, wow what a choice, I am not sure if he has decided yet.

As soon as I can I will get pictures downloaded to her site.

Well I think I am just rampling on. It sounds like the baby in the room next to us is finally calmed down and maybe I will be able to get some sleep. :-)

I will let you all know what the out come of the test are and how she is doing in the morning.

Love ya'll

Lori

please don't forget to pray and sign the guest book

Tuesday, February 18, 2003 12:56 AM CST

Hello from St Louis

Well here we go again. Christina is in the hospital with vomiting, almost non stop since 2:30am Monday. She was vomiting cofe color substance, and yes it tested postive for blood. She was admitted to 7west at Chrildrens around 11 this morning.

They are doing test and trying to see what is going on. I will let you know when I Know something, she does better when she is still, but if she drinks anything it is up with in no time. Ice chips stay down for a while, but that is about it.

Until later today

Lori

Friday, February 14, 2003 10:15 PM CST

Hello, well I think it has been like about a week since I did an update, I was waiting until I talked with her doctor in St Louis.

And I did today. Here is the game plan for all who are interested in what is going on.

Christina does have BO (Bronchiolist Obliterants [chronic rejection]. And no they are not relisting at all right now. The question was when to us the drug called Atgam (sp?)this is a once a life time drug.

Well the Transplant team talked today and it was decided to use it now. I think her doc wanted to know how I felt about it before she actually told me what they had decided. I told her I wanted what was best and I was thinking if it was going to help slow things down then I wanted to do whatever it took right now. It only made sense to me. She helped me know and understand why she had been dragging her feet on changing her meds. The risks that are associate with using this are not too good. She can go into further renal failure, have infections (severe enough to lead to death [rear, I believe, but a risk]).....the question was were they worth taking for the benefits and they said yes.

So, we are going to go to SL next week to see opthomology and neurology and talk wth pulmonary, more our cordinator. Then come home. Then we are going to go back the first week of March and she will admitted into the hospital for about 11 days, the drug therapy is 10 days long. After that we will change her immuno drugs. The reason for the wait is her doctor will be on service starting the first of March and she will be following her closely along with the renal docs. (so how long we will actually be in SL I am not sure at least 3 weeks)

She is also concerned about some of Christina's behaviours. I believe I told you about her not being able to do the excerise testing and how she cried through it. Well, she was her to see neuropschy again for another evaluation, this has nothing to do with pulmonary but her over all well being. So she is going to talk with them and see when they can get her scheduled.

Well on the brighter side......Tomorrow we are going to have Christina's 2nd LUNG-AVERSERY party. She is so excited, we are having two parties in one, one for family and friends and the other for the public. We are going to try to get some people willing to help with fundraisers so we can get a jump start on them all.

I promise to get some pictures somehow on for you all of the party. It is going to be so much fun and so much work.

I have a surprise for her. Her brothers are going to bring her in, and then I am going to give her 7 silk "red" roses and two "white" roses, the red for her pretransplant life and the white for her post transplant. The reason for silk and not real is like a silk rose that never dies, my love for her will never die and it will never have an end. Then she is going to give her brothers each a red silk rose and tell them how much she loves them and how strong they are for her.

Well that is all for right now, I will let you all know how the party went, I might just add it on to this update, to keep a watch.

Love ya, and keep praying we need a MIRACLE

Lori

Friday, February 7, 2003 9:39 PM CST

WE ARE HOME

Yes we finally made it home today about 5ish. We were to come home yesterday, however, Christina was not feeling good and was running a low grade temp and we were told to keep her in bed and just watch her. As the day went on she became more congested. I talked with her nurse today about getting some decongestents and was told no. We are needing for what ever is in there to get out through her coughing.

So far our schedule for this week is on Monday going to the doctor and then on Thursday she gets her IVIg and then next Sunday or Monday we are going back to SL. On the 16th or 17th. And we will be there for anywhere from 2 through ?-- weeks.

My fatherinlaw is doing much better too. He came home today too.

We took Christina off of the Tenex and she is almost back to her old self, not as crabby. It is amazing what these drugs can do.

I have to email SL with some questions I have about the retransplantation and what is her prognosises is. I know the long term outcome and that I do not know but I want to know what to expect as we going along. My question is why not list her now and then let her get to the top of the lest and then place her inactive. I am not sure how long they plan on this not relisting stuff. From a medical stand point I understand it but from a mothers point I have a problem with it.

Well I am going to go right now, I am so ready for bed, it has been a long two weeks. But I will enjoy being home while we are here.

Talk with you all later

Lori

Don't forget to sign the book

or email me if you wish

Wednesday, February 5, 2003 1:45 PM CST

Day11

We are going home!!

Once again Christina was not able to do the excerise test, the reason is unknow.

After talking with the doctor, she believes the yes she is in chronic rejection, but to what point we are not sure. She says there is something called Bronchiolitis Obliterants Syndrom and it is in 3 classes. Weare hoping the Christina is in the first. So it would be BOS1.

The plan right now is to take her off one of the meds that she uses for tic like behaviors and off all antihistemines. Just in hopes that this will helps her lung function numbers, though it is not thought that it will. I am to do her spirometery daily and send them here, and in two weeks we are to come back and then we will be changing her immunospression meds. The question as to whether we will be using a drug the called Atcam (sp?) or not. There is a substantail amt of risk with this drug too, and it is a one time use only drug. We should know that when we come back.

Christina is also going to start a physical therepy program at home, as soon as Dr. Wheeler can set something up. She is to have it 3 days a week.

Now for the questions about doing an open lung biopsy. The risk right now would not merit the possible out come. As I have said in the past, BO is a patchy process and the test may come inconculsive.

So until I get home, tomorrow afternoon or evening.

Thanks for your prayers and please do not stop, we are still needing a miracle.

Lori

Tueday, February 4, 2003 1:36 PM CST

Day 10

Hello again from St Louis

here is the update on Christina:

She has completed 6 of the scheduled testing and so far things are still pointing to rejection. Today she had to do an excerise tolerants test and she did not last long on it at all. She was in tears when we finaly stopped, and not matter how much we encouraged her to keep going she just could not do it. Tomorrow we have PT and the therapist is going to go the pulmonary function lab and we are going to try a different way of doing the test and then we will see what is going on.

I received a phone call just a little bit ago from my pastor telling me that my father inlaw, has suffered a heart attack today. He is stable for the time and did not want me to be called. The boys are taken care of they will be staying with a friend, and as of yet they do not know this, so if anyone is reading this that sees them, please do not say anything to them. It is so hard right now being here, when I need to be there too. I have not told Christina about it either, and am fighting within me whether to tell her or not. I am not sure how much she will be able to handle. I know the first thing that will be in the kids mind is that grandpa is going to die, they will think of their grandma and that is how she past away. Please pray for him and the kids.

I will try to update later today or tomorrw for sure after we see the doc.

Thanks for stopping by

Lori

Monday, February 3, 2003 1:46 PM CST

Day 8

Hello again from SL

Well as you know we are out of the hospital, she was discharged late Friday afternoon.

The weekend was okay, she seems to be getting pretty winded climbing the stairs to our room at the RMH, and we did the mall thing on Saturday and I heard her complain alot and want to sit down. But me being the me, I made her walk, she needs the excerise.

Today she had her share of radiation, she started with chest x-rays, then she had her VQ scans, this looks at the gas exchanges and the air flow within the lungs, she just finished with her cat scan. I have not real results on these test, the tech from the vq scan did tell methat there was a change from last month. How much I do not know.

Christina is currently in the school room, I don't think that she is too happy with me right now that I told the teacher there to have her do some school work. Christina thought that because we do not have her work from home that she would not be having to do anything now. I guess I fooled her :-)

I will continue updated on a daily bases if I am able too. Tomorrow she has full pulmonary function testing and an excerise tolerants test.

Until then, thanks for stopping by and checking.

Lori

Friday, January 31, 2003 at 01:16 PM (CST)

Day 6

Greetings

Well we are getting out of the hospital, at least I think we are. However, as I said before we are not leaving St Louis yet. Starting Monday Christina will be going through a full pulmonary evaluation. And then the OR is penciled in for a bronch. I am assuming the they are doing this to get her airways to see if they are going to need stents.

She had the eye test and I do not know the results, but if there is a change, we may need to do another spinal tap. I hope not. They have also started her on two new meds, on is for the headaches and the other is a water pill,,, this she will have for 6 months. In 3 months she is to re-evaluated for the tumor situation. But of course next week she is to still follow up with her neuro doc.

She is doing good and she finally ate some real food, not because she wanted too, but because I made her. She is still some what unsteady on her feet. I am sure this will all change as the days go by.

That is about all, I will update when I can, hopefully on Monday inbetween appointments.

Until keep praying

Thanks

Lori

Thursday, January 30, 2003 at 04:39 PM (CST)

Day 5

Christina is doing much better praise God. She has been up and out of bed today and even in the play room making her crafts. :-) So far we have only complained once about a mild headache and not vomiting. Her eyes are still looking very tierd though.

Remember I have told you about the relisting for a 2nd transplant? Well I have talked with her cordinator and with one of the pulmolnogist, and it is true. I am so upset. I asked why and they told me that the statics at not good. As of right now SLCH is the only center that would relist for a 2nd tx. And if I am understanding right, 1/3 make it out of the PICU and then only 40% survive one year. They told me that they may start relisting in the future, but right now the numbers are not good, and they want to figure it all out and see what changes need to be made.

I understand, and I have voice my concerns, I told both of them that I feel like we are throw away a 2nd chance with out relisting, the long term outcome of chronic rejection is not something I want, and I know that there is a chance of things not going good with another tx, however we have a hope. And that is not a hope that we are going to be able to have. I asked how do I tell Christina that if indeed she has chronic rejection that she is not going to get another chance. They told me that it was going to be her doctor who will have to talk with her.

I also asked what is going to be the treatment for BO (bronchoilist obliteran) or chronic rejection, and so far it is changing her total immuno therapy and watching, some kids do great and survive a long time, (2-3 yrs) and then others may not make it to one yr. I have a lot to think about. And I plan on voicing my oppinon. I only want what is best for Christina, I don't want to lose.

As for all the test results for the problems she is having now, we are still waiting for the eye doctors to see her. Also the question of whether she is well enough to do all the pulmonary evaluations that she needs to do next week, is waiting to be answered. I want them done, and according to the doc I talked with, if all looks like it we may even change her med therapy next week, that will mean us being in SL for at least another 2+ weeks, but this is not known for sure, I will let you know what I know what in the world we are doing.

Until later remember to KEEP PRAYING FOR A MIRACLE< someone will touch the heart of God and I know He will answer

Thanks

Lori

Wednesday, January 29, 2003 at 08:50 PM (CST)

Good evening all

Well the results are in.....The MRI looks normal PRAISE GOD!

It is almost positive what her problem is, is the PSUEDOTUMORCEBRI(some have asked what this was, it is a "false" tumor on the brain, in this case I believe it is on the base of the brain.) What the course of treatment is right now is a new med for her, which of course I forgot what it is called, but it acts as an anitconvoslant and a dyretic. Tomorrow she will see the eye doctors and if her 'blind spot' has increased or the pressures in her eyes, then a more drastic measure will have to be taken.

From my understanding there is nothing that can be done to totally rid this from her, we have to treat the systoms. One of the keys will be to keep the cranial pressures down and in check. (This means to help keep the fluid from building up)

Also, some have called questioning about her kidneys, and it was told that she was in total renal failure, true she is in renal failure, however, they were never shutting down. Her kidneys were not working right and her numbers were very high, however, they are coming down and thanks to this new med, she is using the bathroom more than ever :-)

I want to thank you all for your prayers, and ask that you keep them up. God has helped us thus far and he will keep helping us with each day, no matter what the news.

She is also to have some dye injected into her port site and have it looked at and see if it indeed needs to be replaced, right now it is working okay. I am not sure when this is going to be schedule for, we have to get one thing taken care of at a time.

I am anxious to see what the pulmonary doctors are going to say once we start looking into all of that stuff, I want an answer as to what I heard about relisting if indeed she is in chronic rejection.

As always I will be letting you all know what is going on. I of course do not have idea as to when we are going to get to at least get out of the hospital. I know from here we will more than likely go to the Ronald McDonald House.

Until I know more

Lori

Feel free to call if you can. Christina is injoying answering the phone. And Matt she really had fun talking with you lololol:-)

If you have any questions please feel free to ask I will do my best to help you understand

Wednesday, January 29, 2003 at 01:48 PM (CST)

Hello again from St Louis, we are day 4 in the hospital.

She had the MRI this morning and it went well, she is a little "witchie" with me right now, and I think the next person to ask her if she knows where she is she is going to go "postal" :-)

Last night was a good night, we tought maybe we had nipped the headaches and the vomiting. However, this morning things started all over again, so we started with one med, and that did not last but maybe two minutes, and then came the IV and that did not work, and then some more drugs, and of course the general sedation for the MRI and now she seems to be fine, a little sleepy still I think, but she is not complaining of pain.

One of the things we are going to try to do in eliminate the meds that can cause the psuedotumorcerbri, and change it to something else, one of these is her septra, and we will be doing an inhalor type thing, once a month, however it has to be in a negative pressured room to do it, and as soon as we can get it scheduled in the PICU it will be done there.

Tomorrow we hope she is to see the eye doctors and see if there is not something going on there, I am not really sure what they think they will find.

We still have not done anything about he pulmonary. I did find out the SLCH is not automatically relisting kids with BO or chronic rejection, I am not too happy about that, I will let you know more about that when I know more.

I guess that is all for right now. I will let you know the results of the MRI as soon as I do, Pray, PRAY PRAY

Thanks

Lori

Tuesday, January 28, 2003 at 02:35 PM (CST)

Hi everyone

As you know we are still in SLCH.

Christina is still running fevers, her ave. is 38c or 101 she has gotten down to about 100, I am not sure what it is right now tough.

She is still vomiting and having moderate to sever headaches. So far the test are coming back OK. She had a spinal tap when we got here and there was enough fluid indicate that the psuedotemorcebri is back, I am not sure how they can come back. However, once we get all of this figured out, then we can address the lung issues but until then, we are going to take it day by day.

It is nice the the computer is in the room across the hall from her room so I am not too far away from her. Right now though my Pastor and his wife are here to be with us. Needless to say we are all very concerned with what is going on.

She is scheduled to have an MRI tomorrow morning at 11 under a general. She can't handle going into the tube of the machine.

Well that is all there is right now, remember to keep her in your prayers and her brothers too.


God Bless


Lori

Monday, January 27, 2003 at 08:43 AM (CST)

Hi everyone

First Thanks Matt for updating yesterday. I appreciate it.

We about 3am we were air lifted to St Louis. Christina started having "altered mental states" and was talking out of her head around 7. We thought it was because her fever got to 103.7

Then again around 11 she started, only this time she was not even looking right from a neuro stand point, she did not even know who I was. All she knew was my name was Lori and that I was not her mother.

After talking with SL it was decided to bring her here. So we finally arrived sometime after 5.

She is resting now, after a Ct of her head and x-rays of her stomach and chest. They also did a spinal tap, pray for no side effects.

I am waiting to see the pulmonlogist to know what is going on, I don't think that they know right now either.

I will update you as I find out.

Thanks for stoping by, and please keep up in your prayers. Pray for my boys too, I did not get to tell them bye before coming up here, the last time I saw them was as they were leaving yesterday morning to go eat breakfast with grandpa and then they went to church. This is really hard on me right now.

Thanks

Lori

We are currently at Children's in room 7W 34. 314 454 6000

Sunday, January 26, 2003 at 05:33 PM (CST)

This is Matt. I am one of the nurses at St. John's Hospital in Joplin. I sometimes get to take care of Christina or assist in her care. I like to take the "Patch Adams" approach to nursing.
I am updating Christina's Web Page for Lori. She is currently in St. John's in Joplin. Christina has been battling nausea and vomiting since this morning. She is getting IV fluids and medications.
As always Christina is a wonderful patient. Lori is a model mom and the most caring mother I have ever seen. OK. Now that we got that out of the way. We are keeping a close watch on Christina and she is getting top-notch care.
Lori will update the web page when she has more information or change in Christina's status.

Friday, January 24, 2003 at 08:19 PM (CST)

Hello again

Well I heard from SL this afternoon and the game plan is:
We are going to be there on the 3rd of February. They are going to run a series of tests and then we will meet to discuss the findings, some of these test are a Cat scan of her lungs, a profusion scan, a walk test, and full pulmonary function tests, and then an excerise test where she wears this funny hat type thing and has a thing in her mouth to blow through, and rides a bike the whole time. She has done this before, and is not thrilld that she is going to do it again.

I am not sure how they are feeling up there, it seems like her doctor was a bit more mellowed than usual when we talked. Just pray for us.


Oh Stephan her younger brother has been sick with the flu, lets pray she does not get it, they are keep apart from each other, and even using differant bath rooms.
We are still planning her party for the 1st and then we will leave Sunday morning for SL. We are hoping for several friends from out of town to be able to make it. Some look promising, one of then I have not told her about yet, Ashley don't you tell her either if you are reading this.

Well Got to run, talk with you all soon

Lori

Monday, January 20, 2003 at 11:18 PM (CST)

**************January 24th**************

Here is a quick update. I have emailed St Louis tonight about Christina, and told them to call me in the morning. I am starting to get a little concerned about her excessive lack of energy or in other words, the way she is wanting to sleep all day long, she is doing her best, bless her heart, to stay awake at school, but is having a hard time of it. When we come home from school she lays down and is asleep within minutes and then if even tonight at church, she laid down on my lap and went to sleep, and when we got home she was in bed and asleep right away.

Her lung numbers are still about the same, she is hitting some lower ones, and I have emailed them to SL also. I will let you know what I find out when they call.

Thanks for Stopping by
****************************************

Hi everyone, sorry it has taken me a little while to do an update. I know some are tired of reading the same stuff :-)

Well things here were a little exciting on Saturday night around 12, when the smoke alarms went off and the house was full of smoke. There were no flames, so I knew it was not a fire. The fire department came out and they could not even find the cause. We needless to say did not stay here that night. The next day I had my brother inlaw come over and we found out what happened. Some insulation had worked its way into the furnance, and setteled on the heat coils in the heat pump. And the force of the air pushing through the unit caused all the smoke to come into the house through the duct work. Things are back to normal. I was not slow in thanking God for His mighty protection. I never thought I would be so glad to have smoke alarms. (the doc listened to Christina today and she sounded fine, no problem with the smoke.) I think someone thought we needed a little more excitment in our life, if only for the night ;-)


Now for Christina, all of her numbers are stable for the most part, at least when looking at her kidney numbers. They are still high, but the are "normal" for her. Her pulmonary function is about the same too, she is hitting some more in the 40% but for the most part she is staying within the 50%s. Her average is 52% lung function.

She is not feeling well tonight, she was short of breath pretty good, her side was hurting on and off (where her port is) and she was feeling bloated and very flushed in the face and very tired, she slept this morning at school quite a bit too, though she tried not too. I will watch her through the night and see how she is in the morning, we may be going back to the doctor then.

I will let you know if I have to take her, and how she is doing. I may just add it to this page.

Good night, and thanks for stopping by.

Lori

Thursday, January 09, 2003 at 09:01 PM (CST)

Hello again

Well another week is about finished and we are ready for the weekend. Not that we have anything planned, I still have to make up for last weekend and get some major house cleaning done, anyone what to volunteer to help :-)

Plans are beginning for Christina's 2 year post transplant party. Our church just added a new fellowship all so I think I will be hold it there. Watch for details.

As for how she is doing, okay. Her labs this past week were, BUN 42 (down 3 more points, praise God) Creatinine was back up to 1.2, but she is "stable" with that, her cyclosporine was 325, too high, we lowered her evening dose by 25 mgs. We will again do her labs on Monday, and then Thursday she is scheduled for her IVIg again. Man, the weeks are flying by too fast for me.

I emailed SL with an update on how Christina is doing. I am still awaiting a response. I have to call our physical therapist from SLCH tomorrow morning and see what kind of things she wants Christina to do. She is already walking her treadmill everyday for 30 minutes at 2.5-3.0 mph. She so far is not complaining about it, not like she use too, I think she realizes how much she needs it. I know it is boring to just walk, but I have the monitor in there and she can watch a video while she is walking and that helps the time fly by quicker. And of course her brothers like to be in there with her to watch, only they don't get to pick the tape.

The boys are doing fine, just trying to get back in the grove of doing school work, it seems that we have more homework this week with them both, than we did all year.

I get to go to the bone doctor tomorrow morning and see what he thinks about my hand. One consolation to all this is he is not too hard to look at if you know what I mean :-) The last ortho I had when I broke my foot was a great doc, however......

Well, I guess on that note I will close, don't for get to let us know you stopped by,

Love,

Lori

Saturday, January 04, 2003 at 11:11 PM (CST)

Hi

I trust everyone had a good start to the new year. Here are some updates on what is going on here.

As I told you Stephan had his 6 month visit with the cardiologist on Friday. All looks great. He does not have to see Dr. Gelatt for a year. I was cool seeing the device that they used to close his hole on the echocardiogram. I think the tech was surprised when I was able to point it out, she does not know me to well :-) It was also nice to see Dr. Gelatt again, he was the doctor who first saw Christina, well actually he was her cardiologist for about 5 years, before we had to go to St Louis with her lungs. He is an awesome doc, and really cares for "his" kids.

Remember back in September when I fractured my hand, well I had finally gotten the cast off right before Thanksgiving and have had it in a splint all this time, well it is still not healed. My doc thinks I might have messed up the tendon or ligiment or something, so Friday afternoon, I had to have an MRI of it. That was something that was quite interesting. I had to go into the whole machine for my hand. Thus for an hour I laid in a superman position. Boy was my arm tierd and my ears deaf after it all. On Friday of this week I see a bone doctor. When it rains, it pours.

As for Christina, she is her normal self. Though her numbers for her lung function continue to drop, she is still playing with her brothers and begging for friends to sleep over. We went to Springfield today and did a lot of walking and she kept begging me to slow down and asking if she could sit. We went to Bass Pro Shop and the Museum there, it was interesting. After there we went to eat at Chilis and she was not that hungry, she really is not eating a whole lot lately. Then when we got in the van to head home she was asleep within minutes. She laid right down and I did not see her little head until we were near Joplin.

I plan on talking with Dr Wheeler on Monday about these changes and see what he thinks. And then more than likely I will be calling SL and asking for something to be done, if he does not when her lab results come back.

I will let you all know what is going to happen, if anything after Monday.

Talk with you later

Lori

PS Please sign the guess book, she was wondering why people have not signed it as much as they did before.

Tuesday, December 31, 2002 at 02:59 PM (CST)

Happy New Year. WOW it is hard to believe that 2003 starts tomorrow, where did 2002 go?

Well here are a couple updates on Christina.

Last Monday we had some labs drawn and her BUN was up to 52 (remember the norm is 5-18, she has usually run around 36) her creatinine was 1.2 (norm is 0.3-0.7). And her cyclosporine level was 231 which was fine.

Yesterday we again did labs and her BUN is down to 45 and the creatinine is down to 1.0. These numbers are still high, but at least they are down.

I talked with her pulmonogist today, and the "game" plan right now is to do a lot of monitoring, she is to have her cyclosporine level check weekly and to have a basic metabolical panel done weekly, this will tell her how kidney functioning and some other numbers as well. I am to keep doing her spirometery weekly and send them to SL in 4 wks, unless I see a change. Then, we talked about her port, which is needing replaced, and I was shocked to hear that they agreed with me. We are going to try to hold off on that as long a we can, to replace it means for Christina to go back in the OR, if we can keep it working a little longer that will be great. For now Christina is "stable".

Her Doctor is also going to be talking with physical therapy about what kind of excerise program will be good for Christina. I am getting her tread mill over here and she is going to start walking it again, (it has been at her grandfather's until I was able to make room for it, it is huge). So I will wait and see what PT says. ;

I also told Christina that we are all going to start a low carb and high protein diet, almost like a diebetic diet. It is not going to hurt any of us. (Who knows I might even lose a few pounds, and trust me I will not cry about that)

Stephan is going to see the cardiologist Friday for his 6 month follow up after his procedure in July for the ASD he had repaired. He is going to see the cardiologist that first saw Christina before we went to St Louis. He comes down to Joplin once a month.

Well I guess that is all, there is no more. Keep praying for my little girl. I know God can do miracles.

I trust you all have a safe holiday tomorrow, and a very, very healthy and blessed 2003

Lori

Don't forget to sign the guest book

Tuesday, December 24, 2002 at 09:43 AM (CST)

Well it is Christmas Eve and I trust this finds everyone feeling the "warmth" of the season.

We here are feeling the snow, it is so bright outside that it hurts the eyes to look. It has been snowing now for 2 days and hopefully it will stop this afternoon or early evening. I heard on the radio some places around here may get as much as 16". I am glad for snow for Christmas, but not this much, and it can melt on the 26th. :-)

Tomorrow we will not only be celebrating the birth of our Saviour, but also the birthday of my oldest son, Josiah, he is turning 11, and believe me I can tell he is going to be such a "pre-teen", please pray for me :-) I thought girls were the only ones with emotions ups and downs, wow was I wrong.

There really is not much to update on Christina about right now. We had some more labs done yesterday morning and I am still waiting for the results. I was hoping to hear from the doctors office yesterday afternoon, I called up there around 2 to see if they had them yet, and they were going to call me back after they called the lab, I guess they left early because of the weather, because I did not get a return call. I am going to try here in a little bit to see if they are even in the office.

We want to wish each of you a VERY MERRY CHRISTMAS, AND A JOYOUS AND HEALTHY NEW YEAR. God bless each of you

Love

Lori and chrildren

Friday, December 20, 2002 at 11:17 PM (CST)

Hello again, sorry I have not updated all week. Things here have been busy.

Let see, last Friday we had some lab work done to check Christina's BUN and Creatinine, and she received some IV fluids, to help flush her kidneys of the contras used during the CT of her stomach.

On Monday she had some more labs to check her kidney levels again, they looked okay, for her. We were going to keep her port accessed until Thursday; however, by time we left the othorpedic doc with her brother, it was hurting her and she complained of feeling the needle, that was a new one for her. So we went back to Dr Wheeler, and he de-accessed her, that was easy. :-)

On Tuesday we were at school, the first time this month. wow. Nothing really happened that day, the kids had practice for the Christmas program and that was about it. Weds. was pretty much the same, nothing exciting, (not that I am complaining :) I did talk with Dr. DelaMorena, I will fill you in on that.

Thursday she received her IVIg, it was a long day at the hospital. Nothing exciting. An interesting note here, and Matt don't get mad, it was just too funny. One of the nurses from the floor was not "working" that morning and he came by to visit, before he went to teach CPR, anyway on the way home Christina tells me that she did not recognize Matt at first, I asked if it was because he was not in uniform, and she informed me that was not it, but that "he put on a lot of MUSCLE". So see now I know that if I gain anything it is all muscle, nothing else. :-)

Friday we had a half day of school and a Christmas party with gift exchange. It was fun. The best part was at noon, dismissal. No school until the 6th of 2003.

I had a friend over tonight and we put the kids in their rooms and we wrapped presents, acting like we were playing with things that I did not even buy, it was so funny to see the kids when they came out of the rooms, they were full of questions.

Okay now for my talk with her doctor in SL.

Some of the questions I was wondering about, like what the new drug was and how did it work,, it is known as an Antiproliferated agent, which prevents cell division. It helps keep the white cells (the cells the fight infection in normal people, and the cells that will cause rejections) from dividing and increasing in numbers) it is a very strong drug, and much easier on the kidneys, she will still be on cyclosporine or FK506 but at a much lower dose. We will then be able to see if the injuries to the kidneys are dose related or not. Yes, she will be more immune supressed, I questions about her IVIg if she would get it more often and the answer was no, it has a 1\2 life of 21 days, which means it stays in her system for that long, to increase will be hard to the kidneys, so she will keep getting it every 4 wks.

Now for the BO or chronic rejection. Can we say for sure that she is in it, NO, she has many non specific finding, and this is common with BO, but not a true dx. The question of an open lung biopsy was made, and we will see the first of the year, if her numbers are still down (which they are) and if the surgeons and all involved think it is worth doing a 3rd one. It may come back clear, but not be a true reading. Bronchiolitist Obliteran is a patchy process in which a section of lung tissue maybe taken and looks fine, but right next to where it was taken from would show the BO, so it is a hard dx to make. The nature of BO is still uncertain.

Question about listing for new lungs and kidneys, answer was, if she got to that point, they would not do both txs at the same time. Yes, she can have a kidney tx, but not at the same time of a lung tx, to risky.

To quote how she is doing from the doc, "she is doing......okay" She is holding her own right now, and to say when and if she will be a canitate for retransplant, depend on her body, right now it is too early to say.

Her cyclosporin level was on the high side and it was decided to keep her there for about a week and see how her kidneys handle it, keeping it higher helps the lungs if it is rejection. So we will have more labs on Monday morning to check her cyclo level and her kidney levels again. I feel bad for her to have to keep getting poked, but that is the only way I know to get labs, I am glad she has the port and we can numb it for her.

Well I think that is all for right now if I can think of anymore I will let you all know.

I do have request for you all to pray about, we have a friend in SL who is 13 and she is waiting for a heart/lung tx, please pray that she gets an awesome Christmas present.

Until later

Lori

MERRY MERRY CHRISTMAS hope your day is blessed
Jesus is the reason for the season

DON'T FORGET TO SIGN THE GUESS BOOK WE LOVE HEARING FROM YOU ALL
And Josiah her brother got his cast off.

Thursday, December 12, 2002 at 05:22 PM (CST)

Greetings from Neosho :-)

We finally made it home this evening, and believe me it felt good to walk into the house.

Okay here is the run down on what we found out in St Louis this last weeek and a half.
1. Her pulmonary functions were down by 12% since September.
2. Her Physical Therapy showed she was not able to walk as far during the 6 minute walk or jog as far, as she did in July.
3. Her profusion scans showed some change from September.
4. Her CT showed some spots in her lungs
5. The CT also showed a spot on her spleen, which we later found out was a cyst, (this was there the last time too and is unchanged).
6. Her LDH and Uric Acid in her labs were high, these can point to PTLD.
7. Her CT of her stomach, was good, (praise God!!)
8. It is believed that Christina is in the beginning stages of what is known as Bronchilitist Obleratans, which is chronic rejection. Although rejection did not show up on the bronch, this is still possible.
9. She has 6% more bone loss in her hips and some more loss over all body, but I am not sure how much. The good thing is that her spine is looking great. Also she has not grown at all. We try to make a game out of it, I do not want her to feel like a "freak" for being so short, I let her know there are a lot of people who are short and who are great people.

Some of the reason for believing this to be are as follows (remember this is my understanding of it all )
a. She has several Mosiac patterns (or airtrappings) in her lungs.
b. Her PFTs are down quite a bit from her highs, about 20 plus percent.
c. Her lack of energy and fatigue.
d. That and what showed up on the test that I don't totally understand yet, but will learn more soon.

I was not aware that BO can show up without showing it's ugly head, it was a shock to me that her doc felt this was the case. Here is the game plan for right now.

1. Watch her PFTs over the next couple weeks, if we do now see an improvement, then we will be changing her immunosupression course, we will take her off the Cyclosporine and place her on something called Rapomycine (sp??) I do not know a lot about this drug, but plan on looking it up and learn what I can, I do know the it is a stronger immunospressant, and that it is easier on her kidneys than the FK 506.
2. She is to return to St Louis to have all the same test run, without the bronch the first of April, normally it would be one year.
3. Basically it is going to be just close monitoring from this point on.
4. The ultimate treatment for BO would be retransplantation. Though I do not believe that Christina is near that point at all.

As for her kidneys, we are watching the blood pressures, and the talk of a water pill was not something the pulmonolgy wanted to do right now if we can get away from it, with all the other problems she is having right now, that can add to the list.

As for how she is doing******great. I explained everything to her and I asked her on that way home how she felt that she may have the starting of BO and she was like Ok. If it had to be that she needed another transplant later on it was okay.

I also explained that some can go a long time before that happened. That she needed to keep up her tread mill and trying to walk even when she felt tierd and short of breath.

We will be doing labs again, tomorrow and around the first.

I will keep you all up to date on the finds as they happen. Right now it is good to be home for the holidays, and we are all looking forward to having fun.

God Bless
Lori

Wednesday, December 11, 2002 at 10:44 AM (CST)

Greeetings from St. Louis

Yes we are still here. Christina had to have a Cat Scan of her belly. (stomach)

I talked with her doctor yesterday and questioned her about the spots on the lung and the profusion scan to see if these were the same as they were in July. They were not. Duh me forgot to ask if those spots from July were still there too.

Any way I did find something out that was a bit interesting. There are times when a person can have Bronchilitis Obliterants (chronic rejection) and almost every test come back inconclusive. That is somehting that they (I guess) are a little bit concerned about, with her pfts going down, over the course of this year. She was at one point hitting numbers in the upper 80's and her lows would be in the mid 70's now her highs are the low 70s. So this is one thing.

Another thing and the reason for the CT today, is to look for the PTLD, (posttransplantlymphoproliferated disease) (cancer). I of course have not shared this fact with Christina, I will wait and see what the CT shows. You know me a worrier form the start, well I am really wondering now, usually no one talks with you after the CTs, well when she was done, one of the radiology doctors came out and asked me if I knew what we were looking for and where in the belly????????? I told then that I knew what we were looking for, but that was it, so I am trying not to read into anything right now, though it is hard not too.

As soon as I know something I will add to this page, please feel free to look in the history to see what has been going on.

Pray also for my boys, Josiah and Stephan. It is hard on them expecting us home and us not coming. Also, Sat we were planning on a birthday party for Josiah, His b-day is on Christmas, I am planning on moving it up a week and having it next Saturday. I can't wait to see his face when he finds out what we got him for it. (I would tell you all, but I don't want to risk it slipping to him :-) )

Well got to run, talk with you soon

Love,

Lori

Sunday, December 08, 2002 at 01:47 PM (CST)

Hello everyone

We are still in St Louis. We are hoping to go home on Tuesday or Weds.

Here are the findings from the reports.

* NO REJECTION!!!!!!!!!!!!!!!!
* NO INFECTION!!!!!!!!!!!!!!!!
* SHE HAS A CYST ON HER SPLEEN THAT WILL BE WATCHED
* THERE ARE SOME SPOTS ON HER LUNGS THE SHOWED UP ON HER CAT SCAN THAT THEY WILL BE WATCHING
* SOME THING ON THE PROFUSION SCAN WAS NOT NORMAL AND THAT TOO WILL BE WATCHED
* SHE HAS MORE THAN 6% BONE LOSE FROM JULY
* WE WILL JUST KEEP WATCHING HER B/PS AND SEE
* WE MAY BE CHANGING ONE OF HER IMMUNOSUPRESSANT DRUGS TO ONE THAT WILL BE EASIER ON HER KIDNEYS
* INSTEAD OF THE NORMAL ONE YR RETURN SHE WILL BE RETURNING TO SL IN APRIL
* ALSO SEVERAL OF HER LABS CAME BACK ON THE HIGH SIDE SO WE WILL BE DOING THEN AGAIN IN A MONTH
* ONE OF THOSE BEING HER COLESTROL (SHE WILL HAVE TO DO A BLOOD FAST LIPID PANEL)
* We still are unsure of where here wt gain is coming from, her diet looked good, and she shows no outward sign of water retention???????????

That is all that I can think of right now. When we get home I will be able to think better and let you all know what is what.

Talk with you later

Tuesday, December 03, 2002 at 09:19 AM (CST)

Hello from St Louis!!

Well today is Tuesday and right now Christina is in the school room working on her English and Spelling. At 12 we are to go to the precedure center to prepare for her bronch wichis schedule for 1.

Here are some of the things we learned yesterday:
* Her pulmonary Functions are down by 12%
* Depending on her her bronch today they are talking of going in and placing stents to help keep her air ways opened. This will be done one day and the next day she will do pulmonary function testing again and if there is no improvement she will go back to the OR and have then removed.

* She has some more bone lose, I am not sure how much yet, I am waiting on the dr. to look at the bone scan.

* During physical therapy she did poorer than she did 6 months ago, in the six minute walk and then in the jog, and she is showing more weakness in her hip area.

* During the CT of her lungs, they were also able to see her spleen and saw something on it. As we were leaving Radiation they stopped me and wanted to do a ultra sound of the spleen, and the doc looking at it right then, said that her could not be positive right then, but he thought it might be some cyst or an injury. I don't know anymore.

I think that is all right now, we are waiting for lab reports to come back and she has, of course, the bronch today. And they have ordered more labs for today. Tomorrow she is to see the kidney doctor, have an echocariodogram and them see the cardiologist. We will have to wait to see what that is.

I will try to keep updates daily on whtis going on. I will more than likely add them to the top of this page.

Keep us in your prayers.

Love,

Lori

Friday, November 29, 2002 at 07:58 PM (CST)

Happy Weekend

Well, only one day left and then we are off to st Louis. It will be nice to see some of our other transplant friends like Ashley and her mom Sunnye and Dan and his mom Debbie. Along with others that are there. Christina is so excited about seeing Ashley, she keeps telling everyone that it as been a year, since September 11, when we last saw Ashley.

We missed telling all the things that we are thankful for. If we were to list them all I am afraid that the list would take several days to make. god has been so very good to us this past two years. His faithfulness has never ended. I guess seeing how this page is about Christina that is the most I am thankful for. For all the work that her doctors do, For a WONDERFUL primary doctor, Dr. Fredric Wheeler, for awesome doctors in St Louis and the wonderful transplant team. God knew just what doctors she would need. We have been truely blessed by all these people and I want to tell them all THANK YOU!

Christina says she is most thankful for:
Her Family, because they are always for you and they love and take care of you.

I covet all of your prayers as we head to St Louis on Sunday and while we are there. Christina's Bronchoscopy is scheduled for Tuesday at one o'clock, so if you have a moment then, please stop and say a prayer for her and for her doctor doing the procedure. Dr. Mattie De la Morena, her pulmonogist.

I will try to update as the week goes along, I will have to do it in between appointments.

Until then have a great week

Lori

Monday, November 25, 2002 at 07:25 PM (CST)

NEW PICTURES ***WELL NOT REALLY NEW, ONE IS REALLY - REALLY OLD, CAN YOU GUESS?*******


Happy Thanksgiving weeek to you all.

I pray this find you all doing well. Things here have not slowed down yet. :-) Maybe by the time I am 90 years old I will have a slow moment. :-)

Josiah went last Friday and got his cast on his hand, it appears that he might have damaged the growth plate in his hand, we will see.

Stephan has strep throat, and is on antibodics, Dr. Wheeler placed Christina on some too, just to be dafe, however, we are waiting to hear from SL, this might not be a great idea, because she is to have a bronch on the 3rd and it may mess things up. I will wait to see. I ahve not started them yet, will in the morning, the pharmacy did not have them ready since they them self had some type of question with it.

She is also having more BP issues, she is starting to get higher readings, I realize that yesterday's reading of 140/108 etc, maybe a one time thing, but she is still on an upward trend, and we are dealing with pulmonolgy and nephrology who seem to have different views on things. It promises to be an interesting time next week in St Louis. :-)

Well, Weds. is CO day----Cast Off day---- At least I hope so. I don't know how I will feel being able to see my hand and wash my hair with two hands and ten fingers again. lol

It is med time and all the fun things that come with it, so I got to run, talk with you all soon.

God Bless, and hope you all have a very thankful Thursday. Remember when you are eating till you feel like busting, take a DEEP BREATH and thank GOD that you are able too.

Bye

Lori

Wednesday, November 20, 2002 at 11:34 PM (CST)

Hi Everyone

Well we have had an eventful weeks so far. Not with Christina either, but her older brother, Josiah.

On Sunday, at church, the school children were doing a program and Josiah was standing on the top step of the platform and for some reason locked his needs. Next thing we all see is him pass out and falling on to the floor, hitting and moving our oak alters about 2-4". (I am glad in was in the front pew.) He has a nasty carpet burn around his left eye, and he landed on his left hand, those causing a fracture to his first nuckle on the first finger. Right now he is in a splint and will see the ortho doc Friday morning. I told him that he just wanted to be like his momma, only the sad thing is he broke the wrong hand, he can still do his school work :-)

Other than that things are normal, we now are on the watch for strep. Christina was with a girl for like todays straight, on close contact and was found yesterday with strep. Dr. Wheeler's nurse called me today and told me what to be on the look out for. Tomorrow she gets her IVIg, so that will give her a boast in the immune system. Her blood pressures are still crazy and her weight is up to 80 pounds, mostly fluid from what I can tell, she does not eat enough to be putting on the pounds like she is.

I have to keep a 3 day journel of what she eats, amount and all, and what she drinks, for her endocrin doctor. We are leaving for SL in a week and a half. Christina is excited. She gets to see and be with Ashely, a friend we met through Second Wind (A Lung tx site) and then we met in St Louis face to face in November of 2000. Ashely was txed in March, so the girls spent a lot of time together when we were in St Louis after her transplant. That she she get to go to the lung transplant Christmas party. She is literally counting the days down, well almost, she is doing the week thing, but next week it will be days. :-) She told me we need to start packing tomorrow to get ready to go. I told her that she could but I did not have that many extra clothes. (lol)

Well Got to run, it is very late and we have to be at the hospital by 7 in the morning. Pray all goes well tomorrow and we have no reactions.

Don't forget to stop by and say Hi in the guessbook, we love hearing from old and new friends
Talk with you soon

Lori

Oh, only 7 more days and I get my cast off, hopefully =^ _^=

Saturday, November 16, 2002 at 02:36 PM (CST)

Happy Weekend to all

Not a whole lot is going on here right now. Christina is enjoying herself, while she folds towels, watching Pippy Longstockings.

We are still monitoring her blood pressures, St Louis wants me to keep a log for the next two weeks and send them to them. We will be there on the first, so I should know something as to what they think is going on. We are starting to notice an upward trend in her readings.

She gets her IVIg next Thursday and labs once again. I will let you all know how they are looking.

Here is a bit of an update on my hand. I went to the doctor on Thursday, thought maybe I would be able to get a splint on it, but one the cast came off and he looked at the hand, decided that I needed it for at least 2 more weeks, only this time he made it have a lot of support. Before my thumb and first finger were able to touch, well now they don't even come close. However, I now have a colorful one. Yesterday we drew flowers all over it and teh highschool girls colored them in with markers. It is cute, better than just plan white.

Christina just brought me the towels, she is doing pretty good with them. :-)

Well I guess I will go for now, still any advice on the drinking would be helpful.

Have a great week

Lori

Saturday, November 09, 2002 at 12:32 AM (CST)

Hello again

Well another week has gone by, and too quickly for me. We have been on fall break and it seems like it is over before it really began. I guess that is a true sign of aging :-)

Not a whole lot is going on right now, things for the most part are quiet, not that I am complaining. Next month will be a full one for sure. Starting the first two weeks in St Louis, and then Josiah's birthday party (his b-day is actually Christmas day, but we celebrate it two weeks early) and then Christmas and new year. Wow, just think we are almost in 2003.

Christina will be celebrating 2 years post transplant on the 29th of January, that seems impossible, but yet at the same time it seems like a life time ago that she has had her transplant. We are planning another celebration for it, we pray this year she will not be in the hospital for it like she was last year.

If you notice the title of the page is expecting the unexpected, Christina can never be "normal" at least for whatever that is. She is have a small issue with her blood pressures dropping too low at times, we are not taking it several times a day, and then we will be emailing it to St Louis on Thursday. She is currently on blood pressure meds to keep it in check, but we don't want her too low either. She is also not eating or drink like she should, I will be discussing this with her doctor here if she keeps it up. If any have and clues on how to help her drink more, Please let me know.

She knows the importance of drinking and what it means to her kidneys; however, she just can't seem to drink, I have tried all kinds of things and have ran out of ideas. I mean she has her own pitcher, class and juices, etc. She will hardly even drink a glass of Sprite, I have to stand over her to make her drink for the most part anymore, I feel really mean at times, but what am I to do, so I am opened for suggestions.


Got to go, thanks for stopping by

Lori

Monday, October 28, 2002 at 10:12 PM (CST)

Greetings to all my faithful readers and Welcome to new readers.

This has been an exciting week for our family. We are 'finally' in our new home. After about 6 months of building we are in :-) YEAH!!

The kids are so excited about actually living here. Christina asked the other day if we could sleep over here again and then I told her that she now lives here, she was shocked. It is amazing to see how things have changed with them.

Let me help you get a mental picture if what it looks like. The lay out is a 3 bedroom, 2 bath ranch style. My kitchen and dining area are done in hunter green counter tops with oak cabinets and apples, the border is apples and some pears, with cute bumble bees flying around on some apple bloosoms, it is scallioped around the apples and pears. as you go through the opening of my 6' walls that seperate the dining area from the livingroom. You will see a room that is yet to be papered. It is done in what I hope to acheive is an "old fashion" living room in greens,navy,burgondy,and off whites. The funiture is in plains with floral throw pillows. In here you will find my grandmother's hope chest that she received when she was a teenager, and a handsomely crafted deacons bench that looks a lot older than what it is. This was a wedding gift to my husband and I. And I have "lots" of pictures in old looking frames, and all sizes.

The main bath is done in early Americana, it is too, still waiting to be completed. The colors in the wall are, loganberry, nutmeg and capagino (sp). The border is about 6" wide and an American patteren. The rest is awaiting to be finished, the main color accsent will be Navy.

Christina's roome is done in a patteren called "Crazy Daisies". The lower part of the room is sponged painted white, orange and yellow. The flowers are bright pink,blue,green,with yellow centers on these color backgrounds. I know it sounds busy, but really it looks awesome. She is going to have a shear drape that will go over some purple dasiy pegs. Her bed is in multidaisy sheets and her comforter is orange w/ white poke a dots on one side and almost a plaid on the other with all the colors of her room. It is totally a little girls room.

The boys room is in a nautica theme with clipper ship border and a fishing net on a wall with a life saver clock in the middle of it which for numbers uses little ropes tided in differant nautica nots. They have little ships on shelves in their room and we are hoping to find a fishing rod that was their daddy's when he was little (this is a job for grandpa). It will go on the wall with the fishing net. I thought it would be neat for them to have that in their room. Both of the, have pictures of me and him in cordinating frames.

Now for my room, it is going to be in a plum rose with sage and hunter green and cream, of course the bath will match. I still am waiting for nicer weather to move my bedroom funiture over here. (the couch is okay for a while :-).

Well, that is my house, hope you enjoyed the visit.

Now as for how Christina is doing, okay. we still are looking some what puffy, but I think it is getting better or I am getting use to it. She had some labs drawn while she was in getting her IVIg, and she is still high inher creatinin and bun, etc.(kidney levels). Though no higher than before. She is also low in some areas too. But for the most part she is doing great.

Well that is about all there is for now. I just want to let you all know how things are going. I am having some problems with the scanner, I have to see if I can figure it out. And when I do I have some pictures to show from the ground to know.

God Bless and please don't forget to sign the Guest Book.

Love ya'll

Lori

ps
Once again please over look errors, remember I am typing with one hand and one finger. I go Thursday for a new cast, yeah, I was hoping for it to come off, but I guess that was only a dream :-)

Wednesday, October 23, 2002 at 10:24 PM (CDT)

evening everyone

I hope this finds you doing great. Please over look any errors as I am still typing almost one handed :-)

Well tomorrow Christina goes in for her IVIg here at St John's. She seems to be doing okay for the most part only she will not drink (anything) unless I am almost standing over her. I told her today that if by Friday she was not doing better that I was going to get an IV pump and some fluids and keep her port accessed and give her what she needs through it. She was not to happy with the idea, but she needs the fluids, any ideas to get her drinking with out sounding so mean, I am opened to them. She really needs to drink to keep her kidneys flushed. She seems to be putting out only a small fraction of what she gets in anyway, so if we can get her to really drink, that might get better, (of course that is mom speaking).

She has me concerned some what with her weight. Since the first of Sept, she has gained 9 pounds or 4.09 kgs. She looks so puffy in her belly and face areas. I have emailed my concerns to SL and will wait to see what is said. The kidney nurse told me that it was hard to access her without her doctor heres input, however, he is out of town right now.

Her older brother is sick right now. He gave me a little scare with this illness, his neck is stiff and he is running fevers, so to the doc we went today. He has a sinus infection and an ear infection. The stiff neck was thought to be from a viral infection. We will see, his temp was finally down to almost normal before bed.

If anyone wants to trade places with me in our house hold let me know, only for a day to start with :-)

Well Got to run, Oh yea, sorry that there are no new pics yet, I am having some problems with my scanner. As so as I get it figured out I have soem first day of school pics and some of our home in different stages.

Have a great night

Lori

Saturday, October 19, 2002 at 11:02 PM (CDT)

Welcome back to our page.

Well tomorrow afternoon is dedication on our new home.

We are all excited about it. The only thing we really lack from being ready to move in is the fact the the water line going out of the hous is not connected. And for some strange reason we feel this is important.

Oh before I go on, please over look any and all typos as I am still doing this with one hand. This gets interesting at times. And sad to say I will be like this for about 6-8 more weeks, oh what fun-----NOT :-)

Anyway as for the house, the kids and are are like so ready to move in. Every room is done with the exception of mine. I do have the border up in the bed and bath room, but that is all. I am waiting to move everything over there until the day we actually move in. The kids things are there and their rooms are already claimed and who has what side (for the boys room).

Look for some pictures when we finally get settled in. We are literally counting the days. If only the plumber will ber busy. :-)

I hope you all have a get day

Lori

Saturday, October 19, 2002 at 11:02 PM (CDT)

Hello everyone
I pray this finds you all well

Saturday, October 19, 2002 at 10:57 PM (CDT)

<"b">Hello everyong!<"/b">

I am trying something new with this page, please bear with me as I see if it will work.

I will be change font colors nad the fonts<"fontcolor=green">like this, please let me know how well it looks<"/font">

Friday, October 11, 2002 at 10:49 PM (CDT)

Happy weekend everyone

Things here have been busy. I was suppose to go to St Louis with the teachers for our school for a teacher convention. However, the friend who was to keep Christina was sick with the stomach flu and another friend that would have kept her, daughter was sick and ended up with strep throat. So thus, I stayed home I did not want to chance her getting anything.

We have been playing with her cyclosporine levels again, they were getting too low. They lowered the base line for the kidneys, but her levels were lower than that, so we did lab today for it and she also received her flu shot today. She keeps telling me her arm hurts, poor thing. She wanted it in her port and even asked Dr. Wheeler if she could get it there.

She has been retaining some fuilds lately, though I think she is doing a little better, she had put on 4 pounds and now is down one. Her blood pressure was a little high today at the doctors office, so we will have to watch that. Sometimes I think she does not like me too much when I practically stand over her to make her drink. I at times literally tell her to take a sip, and another, she just looks at me and rolls they eyes and drinks. I tell her if she will drink 16oz of water than she can have 16 oz of juice and so forth. She does great about always asking for water whenever we go out to eat, once in a while she will ask if she can have pop (soda). Very seldom do I give in. I have tried to explain to her the importance of drinking and what it mean for her kindys.

Well I guess that is about all there is there isn't anymore.....Oh wait, we are almost in our house. We are all getting so excited. As soon as we are settled in I will get some pics and update you all.

God bless

Lori

Sunday, October 06, 2002 at 11:43 PM (CDT)

Evening everyone

Glad you stopped by

Not a whole lot is really going on here at present. I am sporting a lovely red cast, so if there are typing errors it is because I am doing this for the most part one handed.

As for Christina she is doing fine with the exception of fluid retention. I emailed her docs in St Louis how much she is getting in and how much she is putting out. If I understand it right, these two numbers should be almsot the same. She is not putting out even half of what she is getting in. So I will see what the next thing is. More than likely it will be water pills. This is no biggy, she was one them right after her transplant. Lasix is a very small pill, and she is so use to taking them that one little one more will not bother her.

Oh yea, I almost forgot, you all need to go to www.makeachildsmile.org Christina is one of this months featured children. The picture there is a good one, I will try to get some new ones up here soon. This picture was talked before she started retaining, right now she looks like a little butter ball. Though she is still beautiful :-)

Well it is late and it is hard to type like this, so I will close for now and will let you all know what is said in St Louis

Love ya'll and please don't forget to sign the book.

Lori

Monday, September 30, 2002 at 09:29 PM (CDT)

Hi Everyone

I hope this finds you all doing well.

Everything here is okay. I am waiting to hear from St. Louis son some of Christina's lab work to see what they are wanting to do. Some of her numbers were pretty high at least to me, but we will see. She seems to be bloated and has gained about 3 pounds according to my scale at home. I have plans on calling the doctor tomorrow.

As for me, well if this seems a little off, and if I miss some typos itis because I am typing with one hand. our school had a field trip last week and while we were stopped at a convient store for direction I got out of the van I was driving to talk with the school's principle tripped over an uneven part on the parking lot and hurt my wrist. Ok, I broke my wrist. This is not something that a teacher needs to do with all the kids looking on. Needledd to say it was my right hand so it makes things that much more fun.

So, this is not much of an update right now as soon as zzzzzzzzI get us to this thing I hope to do better, as for right now I have this cast for the next 4-5 weeks,oh what joy. I will have to tell you later about the interestu ing thing that happrened when the doc put it on.

But for now I think I going to go and eat ice cream.

love ya

lori
sorry for any errors

Sunday, September 22, 2002 at 11:32 PM (CDT)

Hello everyone

Well a new week is just about to begin and so far things are okay. We are still trying to get Christina to drink more, but she just does not like to drink that much, why, I don't know. I told her I could get an IV pole for her and hook her up to it. Needless to say she did not like that too much. I am going to try some flavored waters and see if that will help. I know she can drink Kool-aid and that stuff, but I am not big on high sugar drinks for her or the boys. But we will just have to play with different things.

I am going to try to get her in to the eye doctor sometime this week because of the burning in her eyes. On Thursday she gets her IVIg and a bunch of labs to check her kidney functions. I am not sure what all they are looking at, but I will know on Thursday. I am so thankful for an awesome doctor like Dr. Wheeler, who will take time and explain the things I do not understand. It helps too that Christina really likes him too, especially when he has her stick out her tongue to look in her mouth, then he tells her to "put that back in" or something like that. We were at his office on Friday and he had a medical student working with him, and the student came in the room and looked her over and when he was done, Christina told him what it is that Wheeler tells her, and sure enough in come Wheeler and he does that exact thing.

We did change one of her meds, the Clonidine, it was making just way to drowsy. She was falling asleep in school and coming home ready to sleep. So far she has not acted like some one who does not sleep at night, she is a little more moody I think, and wants to cry at almost anything that just does not go right. But I think she will be okay.

Oh I wanted to tell you all, Christina did make a major accomplishment this week. In her Word Building (spelling) she made a 100% on a test that had 40 words and about 10 questions. Christina has a lot of problems with spelling and writing in general. Some of you might remember me telling you that she has Dysgraphia, which is a disorder that effects these areas of learning. We worked so hard on these words, for about three weeks. and then on the pre-test test we took each set of 10 words and she would write each one 5 times and then spell them to me and then write them without looking. When we sat down to the test she would spell them to me and then write them and then she would see her mistakes. I had to remind to think of some basic spelling rules, and she did it. It took us almost one hour to get it done but we did and after a few tears and some frustration she finished and I graded it right there and showed her what she made, she was all smiles then, I don't think she believed that she could do it. It was hard work for her but now she knows that it will pay off for her to work a little harder than most. I don't think she has ever made an 100% in Word Building before. But last year we did not know why she had a time with it. Now we do and we are working with it.

Well I have some emailing to do and then getting the school uniforms out of the washer and into the dryer for tomorrow and then off to bed. Thanks for stopping by, God Bless.

Lori

Oh if any of fund raiser ideas, and care to share them please email me. Thanks

Thursday, September 19, 2002 at 10:56 PM (CDT)

Evening everyone

Well here is this weeks update.

Things have been going okay since we have been home. Though Christina is still at times feeling tierd, she has fallen asleep a couple of times at school. I think she is just wore out.

We are going to lower her immunospression, this will help the kidney functions, we hope. I don't know how this will effect her lungs, though I don't believe that her doctors would consider this if they thought she would be in danager. I just worry about rejection. We have never had it, PRAISE GOD and I don't want to start with it.

Christina goes to the doctor tomorrow afternoon for see if she still has a sinus infection and if I need to refill our antibiotic. I am hoping we will have have to worry about doing that, she hates taking it, she cringes at each mouth full. I have not tasted it, but from watching her, I don't think I want too.

The other day, while she was taking her medicines, Stephan, her 7 yr old brother, told her that she was better than him, there was no way he could take that many pills, Josiah agreed with him. Christina can swallow several at onces. I don't think it would matter if she had to take 10 - 25mgs of the cyclosporine she would take them all at once. She is a little trooper when it comes to her meds, though at times she milks them and it can take 30 + minutes just to finish up. :-)

Next Thursday she gets her IVIg again,and then we have a lot of labs to be done for the kidney doc in St Louis. I am so glad that we can do this all at home. (Joplin)

I also need to get her into the eye doctor again, she is complaining of her eyes burning once again. It seems that when this starts we usually end up with new glasses, oh what joy. She will like it though. If this is the case it will be her 3rd pair since last May. The once thing they watch for is Glacoma (sp) or pressures in the eye. The fact that she is on predisone or steriods can cause this.

Well it is late and I have to get ready for bed, school tomorrow. I will try to add to this later, with an update on the house, we are counting down the days (weeks). And I am not too sure as to who is more excited me, or the kids. They loved playing on the floor in the kitchen tonight, we just had it laid so there is nothing in there to stop them from running and sliding, and I am talking all three of them.

Got to Run, thanks for stopping by, let us know that you did.

God Bless

Lori

Friday, September 13, 2002 at 10:12 PM (CDT)

Evening

We are HOME!!

Christina got out of the hospital yesterday and we were able to come home today. I told her nurse that even if she was still vomitting we were going home. She is doing much better, though she is still tierd. She slept almost the whole way home (5 hours) and then was ready for bed again at 9.

So here is what is going on in a nut shell for those of you who don't know.

We went to St Louis on the 2nd, she was scheduled to have a GFR study, this a nuclear med study to see what her kidneys were functioning at. She also had a clinic appointment with pulmonology and there she was started on Zirithromax (sp) for a sinius infection. By Thursday we had the results of the kidney test, it showed that she has only 31% kidney function and she was very anemic. It was first thought that she would be needing a shot of something called, Epogen twice a week. Now if I can get all of this right I will be doing good. When the kidney functions at between 20-40% the body does not produce the hormone erythopropoitin. This is what tells the bone marrow to produce red blood cells. Thus her getting the shot of the Epogen would help. First they wanted to make sure this is why she was anemic so they did some lab work on her on Friday. On Monday we found out that she was not going to need the shot now, but that did not mean she would not need it in a month from now, but that she was very low on her iron stores so she was started on iron pills.

Christina started throwing up and having diaharra and thus the concern was why she was having it so much. We were told on Monday that if she kept doing it she would have to go to the ER. She finally stopped and seemed to be doing okay later in the day and so we made plans to come home (again). On Tuesday we had to go and talk with the nephology department and then we were heading out of the hospital to home. Christina was very flushed looking, not only in her face but all over, I asked if it could be from her blood pressure and told no, that it would have to be much higher than what she runs to do that. They told me that before I left town that I needed to have pulmonary look at her. I called up to the floor and talked with one of the cordinators, (Debbie was off) and then we went upstairs and she looked at her and then called Dr. DelaMorena and she was told that we needed to go to the ER, Dela Morena was with another patients and could not leave right then. So off we went. It was concluded that she was having a reaction to the Zirthomax so we deceaded it and started her on a new med, which we will begin tomorrow. And she was started on another nasel spray. And labs again were drawn/

All was well and then on Monday we needed to get a cyclosporine level (this is an immunospressant drug), when the results came back the number was 344, she needs to stay between 225-250. Her cyclosporine was lowered from 125 twice a day to 100 twice a day, and we had to have new labs drawn on Weds. After she had her labs drawn we went down stairs to get something to eat and something for her to drink so she could talk her meds. We saw Debbie (our cordinator) and while I was talking with her Christina told me she felt like throwing up, I told her if she needed too to head to the rest room. She said she was okay. We got some food and drinks and sat down and almost immediately she said she had to go to the bathroom, she almost ran there. She once again threw up and had diaharra. She came back to the table and took a drink of her milk and started throwing up again.

I called Debbie to ask for some phenegren and she came down and talked with me and told me that she also wanted a stool sample. When we were getting ready to leave, Dr. DelaMorena came and we sat back down and talked some more. She told me that if she kept this up she was going to have to put her in the hospital for some fluids. Well, this is what happened. She was admitted into the hospital to be placed on IV fluids, her labs showed her to be dehydrated. And her cyclosporin level came back at 417, needless to say we held her even dose and lowered her to 75 mg twice a day. She will have lab drawn again on Monday. She did well once she started getting fluids back into her system. She has not thrown up at all since then. Thank God.

As for the kidneys, we are to have labs drawn monthly to watch for all her kidney levels, and she can not get dehydrated at all, she has to drink 2,000 cc of fuild a day for maintains, more if I can get her too. This sounds like a lot but it is only about 2 liters. This time when she was dehydrated her creatinine (one of the main kidney level they watch) was up to 1.8, normal is .7. she was 1.3 right before we left for St Louis. We are just going to trust her to God once again, He has not brought her this far to turn on her now. This is a new area for me, I know the cardiac and pulmonary stuff, so now I have some new things to learn and questions to ask. Oh what fun, actually I really do enjoy learning all this stuff, I just hate that I have to learn it this way.

So there you have our last two weeks. It was only to be a 3 day trip, I am glad I always pack extra clothes and meds for her and me.

I hope things slow down here now.

Talk with you all soon, don't forget to sign the book. WE LOVE HEARING FROM YOU ALL

Thursday, September 12, 2002 at 10:47 AM (CDT)

Hello all

Well Christina is doing better today, lets keep our fingers crossed. She was admitted into the hospital yesterday afternoon. She was started on IV fluid and it seems to have done the trick. She was most defininately dehydrated. Her creatinine levels yesterday were 1.8 (.7 is normal) and she was at 1.3 when we came up here. Also several of the other labs were high too. This morning they are much lower and looking better. It is a true sign that she is rehydrating.

Dr. Dela Morena told her that she HAS to make sure she is drinking a lot of fluilds. That her kidneys need it to keep functioning, and if she does not drink like she needs too, she will not be feeling well at all. I hope this will do the trick. Yesterday I was literally making her drink water by putting the water bottle in her mouth and making her drink it. Needless to say she was not happy with me.

I will add an update to this page when I get one. IF things are okay this afternoon we will be able to leave the hospital today and head home tomorrow. I am not holding my breath until tomorrow morning and then we will see what happens. I will let you all know when we have actually gotten home :-)

Again thanks for your prayers

Lori

Wednesday, September 11, 2002 at 09:55 AM (CDT)

Hello again from St. Louis

Well we were planning on going home once again today; however, things have changed. She was still vomiting and "other" yesterday and she was flushed from head to toe, so we were instructed to go to ER and there her pulmonologist came down and looked at her and concluded that she was reacting to the antibotic they had started her on last weeek. So that was stopped. Our plans for today was to get some lab work down, eat some breakfast and let her take her meds and then go back to the house, pack and then head on home.

Well as you can see that did not happen. When we got to the dinning area we saw her pulmonary nurse and while we were talking Christina told us that she felt like throwing up, so I told her if she needed to that she needed to head for the rest room. Well she did not throw up right then, however a few minutes later when we were sitting down and getting ready to eat, she had to use the rest rooom and thus the whole thing began. I feel so bad for her, for the most part she feels fine, she is not hurting anywhere and says she feels okay. So she came back to the table and told me she was sick again, and we sat there for a minute and she took a small sip and then it all came up again.

I called up to our nurse to ask for some phenegren to help the with vomiting thinking if we can get home then Dr. Wheeler will be able to handle it. She called her doctor here and then told me that she was going to come down to where we were and that she wanted a stool sample from her. Also a script for some Zofran. We were getting ready to go to the pharmacy and her doctor stopped us and we sat down and started talking. She wants her on sips of water for today and see how she does, and we can see how she tolorates food later, if she throws up again she will have to go into the hospital for iv fluids. She also wants a series of labs to be drawn tomorrow morning.

Her cyclosporine levels were way off the other day so we did a level today and we will see what is going on there.

That is about all for now, I will update you all later and let you know if things change.

Thanks for your prayers

Lori

Monday, September 09, 2002 at 10:32 AM (CDT)

Hello from St. Louis. Yes we are still here and it looks like it will be at least until Weds.

Christina's Kidney function test came back and she is functioning at only 31%. What all this is going to mean for her I am not too sure as of yet. The kidney docs have to talk with the lung docs and get together on course of treatment. Some of the things we are going to have to look at right now are:

Lowering her immunosubpression drugs,(these drugs are very hard on the kidneys, yet most needful to the lungs) thus we increase the possibility of rejection, to what degreee I do not know.

She may have to take a shot a couple of days a week to help with her blood levels, as of right now she is very low in iron and a couple of other things.

I almost feel like I am in a whole new world with the kidneys. I am feeling very uncomfortable right ow, not really knowing a whole lot but knowing enough to wonder. I do know that they usually do not start a child on dialyis (sp?) until they are at 10% function, however with Christina when that wil be know one know with the drugs that she is on. They may have to start her sooner, this is just something thatwe are going to have to watch. And the question of how much "posion" (drugs) can her kidneys handle at this time.

Right now she is not feeling the greatest. She is vomiting and "other" stuff. If she continues to do this today she may have to go into the hospital for iv fluids. She CAN NOT dehydrate, this will really hurt the kidneys. I believe the nurse told me that if she has gone 24 hours and not eaten or still throws up then she wil have to have fluids.

I know this is all kind of shallow and maybe hard to understand, but I will let you all know how things go as I find out. Please keep her in your prayers. She is still in good spirits and her usual "pleasent" self. Though I have not talked with her about all that may happen in the long run. She is aware that her kidneys are not working great and that she may be getting a couple of shots each week, but I have not told her that this may all lead to a kidney transplant at sometime in the future. We will cross that road when and if we get there.

Hope to hear from you all soon.

Love from St Louis

Saturday, August 31, 2002 at 09:31 PM (CDT)

Well we finished our first week of school and everyone survived, even me. :-)

The week was really uneventfull. The kids had dentist appointments on Tuesday, and Josiah should be starting braces by the Spring. All three will end up in braces, the dentist told them to eat their veggies, it will make their mouths grow, that was a first for me.

Today we all spent the day at our new house, painting the boys room and the bathroom. I found the right border for both rooms. For the boys, I found some clipper ships and nauctica flags, also a couple of paddles (oars) that I am going to paint and stencil their names on, a cool clock made from a life preserver, not the jacket kinds (the round ones) and then a fish net. I can't wait to see it all done. At first I was not to sure I liked the way the wall turned out with the sponge painting, but it is starting to grow on me, and several others have saw it and really like it.

The Bathroom is in early Americana, and it looks real sharp. The colors for that room are, Nutmeg, something berry (deep red) and cappichino. It looks real good, I am please with it, and I will be triming the room with blue curtains for window and shower and whatnots.

The doors are all hung and the porch is done except for the top railing, and the garage is done too. The boys like the idea of the garage being done, they were in there tonight, and have informed me that they would like rollarblades and skateboards. (help!!!!) :-)

Well Christina and I are heading to St Louis on Monday for a few days, and plan on coming home on Thursday. Right now she is not feeling too good, she is tierd and her belly hurts some. I have to change her dressing on her port, which is accessed, (for those who don't know what a port is, it is kindof like a central line, only it is under the skin and usually does not have iv tubing. She can swim with this,) We kept her accessed after her IVIg for the lab that will be needing to be done next week. (Opps she is asleep on the couch already she just laid down a few minutes ago)

I know this is not much, but for once there really is not much to report. I will of course update you either while we are in St Louis or when we get home.

Have a GREAT weekend and enjoy a day off from work.

Talk with you all later

Lori

Saturday, August 24, 2002 at 08:45 PM (CDT)

Greetings all:

I hope things are going smoothly where you are at. Things here are busy are ever. School starts Monday, the 26th. And we, the teachers, have been busy getting everything ready for the student. The Learning Centers are nice and clean and the bullentin boards all look sharp. Everything is just perfect, or almost perfect for the kids on Monday.

The talley is in, all three kids are ready for school. Josiah finally admitted today that he was indeed ready for it to start. I was almost shocked to hear that coming from him. I am praying that this year is a great one for him. He has had some rough times the last couple of years at school. With me being gone so much and all. I am hoping not to have to be gone so much this year, but that is something that only God knows. They seem to do better now when we are away. We have some friends that are keeping them while Christina and I are in St. Louis. It will be easier on them and much easier on Grandpa.

Christina is scheduled to get her IVIg on Thursday the 29th. And then we will head for St. Louis on Labor Day. It was comical today, I was at the church (we are adding on) and some of the guys there working asked someone if they were playing on coming to the church picnic that day, and then I said that I know what I was doing, "On the Road Again, I Just Can't Wait To Get On The Road Again." LOL. She is still having some adjusting to do to the new medicine she is on, but I think she will.

Several have asked about an update on our house. Well most of the lighting fixtures are up and they look real nice. I have the boarder up in the Kitchen and Dining Room, apples and pears. And Christina's room is done, in a pattern known as "Crazy Daisies". It is very bright. the colors are orange, pink, green, blue, and yellow. I sponged painted the lower part of her wall (from below the window) in orange and yellow and white. I think it looks awesome. I am looking for thinks for the boys room, we are going to do it in Light Houses and Boats. I think I have found some bourder I like at a place called TradeX. I am thinking of sponge painting their room the same as Christina's only in navy, and pale blue and white. We also saw a new bed that they would love to have, it is a twin over a trundle. I think this would work out perfect. They seem to still like to sleep with each other from time to time and this way they can and during the day just fold up the tundle and it will take up less room. The only catch is that the bed cost about $300 and that does not include mattresses. So we will have to wait and see. They have really out grown their bunk beds. So this is some thing that we will be working on. Oh the joys. As for the master bed room, I think I am going to go with a deep plum rose and green. This will be the first for me. I am not too sure for the living room I have not found any bourder or paper that I really like yet and the same for the main bathroom. But it will all come together in time. My drive way and garage cement will be started next week as well as the front pourch. The back porch is just about done. My kitchen and bathroom cabinets are in and are beautifully done in an Early American stain on oak. My flooring is to be layed soon and hopefully the doors and trimming will be finished being hung soon too.

Well I guess that is all there is to update on. I am glad that we had no major medical traumas to report today. The boys did get their back to school physicals and both ended up with shots, Stephan ran a fever last night, but seems to be doing fine with it all now. Though he was not a happy camper about getting them. I learned that Josiah is going to be at least 6' and Stephan is going to be about 5"11". I don't think Christina will be that tall, I hope she makes it to at least 5" :-)

Well I have to run and get them to bed, church in the morning.

Don't forget to sign the guess book, we all love reading it and hearing from you all.

Saturday, August 17, 2002 at 10:23 PM (CDT)

A friend just emailed this to me and It thought I would share it will all of you.

THE CHOSEN MOTHERS
By Erma Bombeck

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with Lung Diseases are chosen?

Somehow, I visualize God hovering over the earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...............

"Armstrong, Beth, son, patron saint Matthew/"
Forrest, Marjorie, duaghter, patron saint Cecilia"
Rutledge, Carrie, twims, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with lung disease." The angel is curious. "Why this one, God? She's so happy."

"Exactly," smile God. "Could I give a child with lung disease a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today, " said God. "She has that feeling of self-independnece that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she 'll never survive. Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet,but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see..ignorance, cruelty, prejudice..and allow her to rise above them."

"And what about her patron saint?: asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

This really made even me stop to realize that God has not placed me in a position as a mother of a special child for nothing. There are times I wondering if He was mad at me for something, but I know not only in my mind but in my heart that He has a devine purpose in all that we as a family, that Christina and her brothers all go through. The number of people whose lives have been touched just by watching the strength that Christina has we may never know. The same strength that has countless times helped me through some of the rough times we have encountered with her sickness.

The one thing I know is that God's hand is on her, she knows it too. If it were not for His touch I can't tell you where she would be right now, whether here with me or in Heaven with her daddy.

I want to encourage all the parents of SPECIAL CHILDREN to hang on God's plan for your lives willl come to pass, He has forsaken us. Though at times we feel alone and like no one can understand the pain and confussion we feel at times. He does and He cares. I know, I have been there and still at times find myself there. But, then the Lord sends little things like this "poem" along my way to lift and encourage me.

For those of you blessed with all beautiful and healthy children, thank God daily for them. I know I do for my boys. Josiah even knows that God had touched him and allowed him to be the "healthist" of all three children. But please don't take it for granted. Each day we have with our children should be valued more than gold. Love your kids, hug them and tell them of your love daily. And thank God Daily for your Little Blessing.

Well I have to go just thought I would pass this along.

Saturday, August 17, 2002 at 10:23 PM (CDT)

A friend just emailed this to me and It thought I would share it will all of you.

THE CHOSEN MOTHERS
By Erma Bombeck

Most women become a mother by accident, some by choice and a few by habit. Did you ever wonder how mother's of children with Lung Diseases are chosen?

Somehow, I visualize God hovering over the earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...............

"Armstrong, Beth, son, patron saint Matthew/"
Forrest, Marjorie, duaghter, patron saint Cecilia"
Rutledge, Carrie, twims, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with lung disease." The angel is curious. "Why this one, God? She's so happy."

"Exactly," smile God. "Could I give a child with lung disease a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel,

"I don't want her have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today, " said God. "She has that feeling of self-independnece that is so rare and necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world and that's not going to be easy."

"But Lord, I don't think she believes in you," said the angel. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she 'll never survive. Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet,but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see..ignorance, cruelty, prejudice..and allow her to rise above them."

"And what about her patron saint?: asks the angel, his pen poised in mid-air.

God smiles and says..."A mirror will suffice."

This really made even me stop to realize that God has not placed me in a position as a mother of a special child for nothing. There are times I wondering if He was mad at me for something, but I know not only in my mind but in my heart that He has a devine purpose in all that we as a family, that Christina and her brothers all go through. The number of people whose lives have been touched just by watching the strength that Christina has we may never know. The same strength that has countless times helped me through some of the rough times we have encountered with her sickness.

The one thing I know is that God's hand is on her, she knows it too. If it were not for His touch I can't tell you where she would be right now, whether here with me or in Heaven with her daddy.

I want to encourage all the parents of SPECIAL CHILDREN to hang on God's plan for your lives willl come to pass, He has forsaken us. Though at times we feel alone and like no one can understand the pain and confussion we feel at times. He does and He cares. I know, I have been there and still at times find myself there. But, then the Lord sends little things like this "poem" along my way to lift and encourage me.

For those of you blessed with all beautiful and healthy children, thank God daily for them. I know I do for my boys. Josiah even knows that God had touched him and allowed him to be the "healthist" of all three children. But please don't take it for granted. Each day we have with our children should be valued more than gold. Love your kids, hug them and tell them of your love daily. And thank God Daily for your Little Blessing.

Well I have to go just thought I would pass this along.

Saturday, August 17, 2002 at 09:19 AM (CDT)

Happy Saturday to everyone!

Well it is a beautiful day out this morning.

Christina is feeling so much better. She is still a little "wore" out, but for the most part she is back to herself. Thank God!

She is on a new medicine called Clonidine to help with some of her behaviours (typically this med is used to help lower blood pressures, but works great in helping in behaviour problems too). Until she is use to it, it makes her sleepy. It was comical this past Thursday, she went to her Missionette class (this is like the Girl Scouts on at our church), and while there she took her evening pills, after class was over she came home and told me that she was sleepy, and she did not know if she fell asleep in class or not, but she was feeling sleepy in class. Her teacher told me that she went to sleep almost immediately and slept the whole time. :-)

This evening we have a wedding to go too and she is all worried as to what I am going to have her wear. She is passing out the bubbles, and whatever she wears she has told me that she did not want to wear tights. I told her she had too, and that almost everyone there will be, all I got was "oh Man, I hate wearing them things" and of course she had to give me some advise on the outfits she has that she usually wears her sandles with. It did not work. :-)

It has been a little bit since I have said anything about Christina's younger brother. He is doing great. One can not tell anything was done. I think he is a little meaner than before. :-) He has become a bossey little boy and wants everyone to do whatever he wants to do and then to do it right then. I am almost afraid at times to leave him and his older brother in the same room, it might get danagereous. (lol) When he is alone he has not problems, but then there is no one who he could boss. ---Oh the joys of parenting----

School starts in a week, I know Christina is ready and I think the boys are too, although it is not being tough to admit to the fact that they are ready. Yesterday Stephan asked me if he could work some in his English. This seems to be his favorite. Josiah tells me that he does not have a favorite subject, though I believe his favorite is Science and Social Studies. He is the type of child that enjoys reading Popular Science. I for one am looking forward to the 26th. It will be good to start a "normal" routine again. This seems to have been a long summer and yet it went by fast at the same time. Christina likes almost everything, except for her Word Building (spelling).

Okay I have rambled on long enough I guess I will go and get things going for the day. I have to get to the church and finish decorating, outside now, and then hopefully get tot he house and hang some wallpaper. Oh, I sponged painted Christina's bedroom the other day. Are you ready for the colors she picked. Yellow and Orange and White. It sounds loud but it is not too bad, it will look real good once the border gets up. It is a pattern called "Wild Daisies" the other colors in the room are going to be pink, blue, and greens. I will get some pictures of it when we are done.

Talk with you all soon.


Lori

Monday, August 12, 2002 at 10:20 PM (CDT)

-----------------------------------------RECENT UPDATE------------------------------------------
----------------------------------------------AUG. 13TH------------------------------------------------

Well I have some more news. I talked with the neurologist and he has started her on a new medicine that may help her out. We will see. So far we are free from St Louis until the 3rd of September and then we are going to be busy with Nephrology, Neurology and Neuropsychology.

As of today she still does not have much of an appetite and is looking a little pale, I am going to be doing her spirometry here in just a little bit, and then get her ready for bed. I know she will be ready this new med will make her sleepy, thus it is a night time med. :-) Just wanted to let you all know what we found out.

Hey you people at St John's don't forget to sign the guess book, Christina as been wondering if you all have been reading her page. See you all in a couple of weeks.

Also, it was asked by a friend what was it that Christina had, to my understanding it was a fluid filled sack in her brain, I am assuming at the base of it, seeing how the spinal tap was able to drain the extra fluid. I hope to find out more. She is scheduled to see Dr. Wheeler on Friday and I am going to ask for something on it, if he has anything.

Talk with you all later

HOME AT LAST

Well, we finally arrived home tonight around 8. Christina is doing so much better than she was this time last week. Thank God for His touch.

It is confirmed that she had PsuedoTumorCebrial (sp). She was doing good almost from the point when we entered into Children's. Her kidney levels are still higher than normal, but at least they are lower than what they were. We are waiting to hear from the neurologist as to when he is wanting to see her and if he feels that an MRI is necessary. Christina hopes not, she hates them. She has already told me that she is going to go to have to be put to sleep for it.

She did verily well this weekend, she did throw up (again) on Saturday morning a couple of times and on Sunday ran a low grade temp, 100.2 and took a 3 hours nap, and this after being up only a couple or hours. Later in the day and early evening started complaining of stomach pain. She went to sleep and slept threw the night. This morning she was still running a low grade temp and had a little belly pain, but seemed to do better as the day went on, she did sleep for couple of hours on the way home.

I will be waiting to hear from St. Louis this week or hopefully the beginning of next week to see when we are going to be schedule to go up there. I know we will be there the first week of September for her kidney panel study.

Anyway that is about all right now. I was excited to get home and see our house painted and the cabinets in place, I think they will be finished tomorrow. They are looking so good.

Anyway that is a quick update, I will let you know more when I do. Please keep her in your prayer. Me too. This past two weeks have been very stressful for me. It is getting harder to handle this alone. I need some extra strength.

God Bless

Thursday, August 08, 2002 at 10:48 PM (CDT)

Evening everyone

Christina was readmitted in to the hopsital at home on Tuesday, for she was really not getting any better. Dr. Wheeler told me that he wanted to do something that is known as a "blood clot" in her spine to help seal the hole from the spinal tap that was done last week. This was done on Weds afternoon, and Christina's headaches seem to get better. She was still throwing up some and had some pressure but nothing compared to what she was having.

Some of her labs we not too good, they did improve with IV fluids, but not to the point of normal. She seems to be having some kidney insuffentcy.

We are in St Louis currently. We arrived here this afternoon around 2:30. Christina enjoyed her trip more than I, she got to watch videos on the way up in the ambulance, I was folowing in the van.

The doctors here just want to check things over with her and make sure everything is okay, I am to be meeting with neurology and neuropsy. I am not sure as to when and it is still questioned as to whether she will have an MRI after her CT was done. It will depend on what the neurologist thinks. So in all honesty I am not too sure what all is going to be going on right now. I know tomorrow is has pulmonary function labs, her numbers have been down at home and we want to make sure that it is just because she was not feeling well.

Well right now she is in the room asleep, she has a little baby for a room mate who is on a vent that seems to want to keep beeping, I am hoping that it will want to take a rest for the night so that we can get a little sleep. But that is all part of being in the hospital.

A friend of ours is in here too. Her name is Ashely she had a lung transplant not too long before Christina, she is going home tomorrow, but it was good to see them and to beable to "vent" things transplant mom to transplant mom.

I guess that is all for right now I will let you know more when I know more. Hope you all have a great rest of the week and weekend

Lori

Hey you guys at St John's if you are reading this thanks for all you done for Christina you all are a great bunch of nurses:-) And we made it here in better timing than I thought. We did go a bit fast though, like at some points 85, I was praying there was no police around, but then I would just have to tell them that I was following the ambulance with my daughter on board. Hope to hear from all, and we will see you on the 29th, for the IVIg if not before, which I really hope not :-)

Sunday, August 04, 2002 at 02:31 PM (CDT)

Hello everyone

Well we have had an exciting week here in Missouri. Not that I really needed any real excitement.

Let me tell you about it...............

It started on Tuesday Morning with Christina waking up and taking her medicine, she has a habit of taking her cyclosporine and then going to the rest room and then finishing the rest of her meds. Well she did the cyclosporine and came out of the restroom to start throwing up and started crying with a sever headache. She continued to throw up and her pain level climbing. I called Doctor Wheeler and he had her coming in. We arrived there around 10 am and by this time Christina had thrown up about 6 times. She could not even make it from the van to the door without getting sick. Once in the examining room she laid down and was crying with the pain in her head.

Doctor Wheeler looked at her and then admitted her to 7 west at the hospital. I took her over and got her settled in the bed and then went down to admitting. Once back in the room an IV was started and she was given some morphine and some phenigren (sp) she final started to settle down and went to sleep. She then was scheduled to have a CT and if that came back normal she was going to have a Spinal Tap.

Doctor Wheeler thought she was having a reaction to a newer med she was taking called Minocycline. He told me he felt sure that what she was experiencing was something called a Psuedoturmor Cerbrei (sp?) The CT came back normal and thus she had to have a spinal tap. Christina was so out of it she literally fell asleep during it. The fluid that was removed look clear. She was put back in bed and was not to get up for about 8 hours. It was sometime after 10 pm by now.

One of the things that they feared she had was menigitis, thank God it was not. The treatment for the "tumor" thing was rest and sometimes it would mean a series of spinal taps. Christina seemed to be improving over the next couple of days and we were told that she would be able to go home on Friday. Thus by noon, with low rating headache we were discharged. However, by time we got to the elevator her headache went from a 1-2 to a 3 and then once we got to the van it went to a 4 and she started vomiting again. Guess what happened then, that is right she went right back to the room and was readmitted. It was found out that she was having "spinal headaches" from the spinal tap. The treatment for this is to lay flat and IV fluids flowing (hers were going at 80 mg/hr) and caffinee. she liked that part she was able to drink pop.

The day went on and we discovered the she did well as long as she did not move fast and sudden. She finally got discharged today. On the way home she throw up all the way and had a headach of 4. She finally settled down and went to sleep. Doctor Wheeler said that there is really nothing to do right now except lost of rest and she is scheduled to see him tomorrow morning. I am hoping things clear up. One of the things they can do for this is called a "blood block" or something like that. This is something that will seal the hole where the spinal tap was done. See she is leaking spinal fuild and that is what is causing the headaches now.

Oh and to add to all this my youngest son thought he would get into the action yesterday by getting sick and having headaches and vomiting too. I had them bring him up to the ER and he received IV fluids to help his dehytration and some med to help the vomiting he finally was able to go home ( with a friend of mine). He was sleep almost before they got home. He is doing fine today.

Well I will let you all know what happens with in the next couple of days. Please remember to keep us in your prayers.

Love ya'll

Lori

Thursday, July 18, 2002 at 09:22 PM (CDT)

************************NEW UPDATE@@@@@JULY 27th**********************

Okay here is an update, I found ought some results from some tests Christina had.

FIRST: Her bone scan looked okay. She does have two lower vertibras fused together in her lower back. This should no problems in the future and they feel she was more than likely born this way.
SECOND: Her calcium level was real low. They want to try a new type of calcium to see if she an absorb it better. This is puzzeling to them as to where all the calcium is going. The best they can hope for is that is going into the bones. But, that would mean almost all the calcium is going there and none else were.
THIRD: Her neuropsyic testing did not go so good. There several areas in which she showed weaknesses in. They have also dxed her with "Disgraphia" this is were one has problems with the ability to spell or write words, and to organize thoughts. She has a high IQ, however, all these other things are causing problems in school, etc. She also has problems with her memory. That seems funny to say, cause she can remember so much medical stuff, that she goes through and what have you. This and some other problems she has are usually characterized by problems in the left hemispher of the brain, she is showing problems in the right side. The doctor suggested that she been seen by a neurologist and have an MRI.

With all of this I am already planning on going to St Louis for a couple of weeks. I am not sure as to when yet but I hope to know by middle of this week. I told SL that I had to be home by the 23rd for school to start on Monday the 26th.

Stephan is doing great, he has no problems and one would think he never did, THANK GOD.

They all had a great time at camp and can't wait to go back. The only problem Chrisitina had was she vomited a couple times and has started crying in the night with leg cramps. We will see what that is all about.

Talk with you soon. Don't forget to sign the guess book.

----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
At last we are home!!

Here is the update that I promised.

On Friday Christina had her echocardiogram, this was to see the thickness of her heart wall and compare it with her blood pressures. From what I understand if we are treating her high blood pressures good enough the wall of the heart should not be thick, if not then there will be some thickness. I have not heard the results yet, and this will give a good base line. (it seems we're getting a lot of base line for a lot of things lately)

On Monday we really did not do much of anything, just kind of stayed around the RMH for the most part. We had to do a 24 hour urine collections, oh what fun. And then that evening we got tickets to go to the Muny and watch a musicial of Peter Pan. It was pretty good, though it was still kind of hot, even at 8 in the evening.

On Tuesday morning we started her "Bone Study" with endocrinology. We had to have lab work done and the meet with a diatician and then go for a DEXA scan (or a desitometry scan). This was kind of like a bone density scan only more involved and from about neck to toes. This will give them a total look at how well her bones are doing and if there is any bone lost. Remember, Christina is still growing so she should be showing no bone lose. After that she had an xray of her left hand, this can tell bone age, and then she had about 7 xrays of her spine from all angles. After that we were finally free to leave the hospital for the rest of the afternoon.

On Weds. Christina had her neuropsch evaluation. This was not too bad, it was nice to know the doctor who she saw, was the same one she saw before transplant, when they were seeing if the TIA's the she was having were having some effect on her. She was there for about 4.5 hours. She told me later that some of it was really boring. I have an appointment on Thursday at one via telephone with the doctor for the results.

Now for the appointment I had with her pulmonogist about her evaluation that she had the end of June. We are having some "yellow flags" waving and some things to watch.

1. Her Cat scan showed some spots that they are not to sure about, and they are planning on watching them.
2. Her Profusion scan showed that the upper right lobe is not filling with air the way it should. This too is going to be watched.
3. In April, when she had an evaluation, the EBV (Epstein-Barr Virus) was positive, this time it was neg. But her Uric Acid was elevated, which they feel is related. Let me stop here and explain, EBV is the virus that causes mononucleosis, and first time infections after transplant may cause a serious complication called Post Transplant Lymphoproliferative Disease (PTLD) This is a type of cancer. So we will be doing lab work monthly to watch these levels.
4. And finally, after looking at the results of the neuropsc. test, she will be scheduled to see a neurologist and then have an MRI, to see if the Cyclosporine is interferring with the neuro-transmittion in the brain. If they feel this is the cast, they are going to put her in the hospital for 10 days and change her from the Cylco to the FK 506 or another name for it is Prograft or Tacrolimus

Well that is about all that we found out this week.

Christina is getting to go to camp in Weatherford TX, next week, she is so excited. You should have seen the check list that we had to make sure they had before St Louis agreed that she could go. So I will only have one child home. Stephan does not think he wants to go, they other two are trying get him to go to camp with them but so far they are not having any luck.

Well, I guess that is all for right now I have to get and some things done before I can go to bed.

Remember to sign the guess book

God Bless

Sunday, July 14, 2002 at 03:28 PM (CDT)

Well Hello everyone

As of right now we are still in St Louis. Stephan did fine from the ASD repair and is scheduled to see the cardiologist in 6 months. I am so relieved.

However, not all was well with the report on Christina. So far we have added 4 things to this visit with her. She was only to see the endocrinologist and the dermotologist and now she has had to have an echocardiogram and and a lot of other testing.

We are talking about changing her cyclosporine to FK506. That will be desided on based on some of the testing she will have to have in the near future.

I will give a better update later, Right now we are at the science center with some friends and thought I would log on for a minute.

I will try to get an update done maybe tomorrow

Until then

Lori

Monday, July 08, 2002 at 11:06 AM (CDT)

Well after an exciting week at home or half a week spend at home. We are now in St. Louis with Stephan. Christina will be coming up tomorrow evening and her and a friend will be meeting us here at the hospital.

Stephan is to meet with one of the girls from Child Life in just a litle bit to have a tour and to have things that will happen explained to him. Then tomorrow morning he will be admitted into the hopsital at 8 in the morning and then go to the heart station for an echocargiogram and an EKG and then to radiology for an xray and then to the floor and then to the cath lab. He is to be the first case of the day.

Please pray tomorrow that things will go according to plan and the they will be able to repair the ASD thru the catherization. He is very nervous. He work up this morning wondering if he was going to have an IV tomorrow. He did not like it when he had on last week. I told him that usually the Emla cream is left on longer than what it was last Monday. The nurses had to have to hurry up and get the IV started before he went for his bone scan. I think that he will do okay once he is here. His big worry is that he will feel every thing while he is asleep.

Christina has tried and tried to tell him that he will feel nothing at all when he is asleep. It is hard to explain to a child that the kind of sleep that you have when you are in surgery is not the same that you have every night. I am sure once he talks with Kimberly this afternoon he will feel better.

He is hoping to be able to go see a Cardinal's game this week, though I am not too sure about that. I don't even know if there are here.

Well that is about all for right now. I will keep you all updated as the week goes along.

Oh, it is so weird being here without Christina, she will be here on Tuesday evening, she is scheduled to see the dermotologist and the endocrinologist on Weds. Then at four I am to meet with Dr. DelaMorena and Debbie for our final exit interfer to go over all the test that were done in the last two weeks and let me know what the plans our and how long we get to go until we come back, at least for the pulmonology department.

Until later.

Lori,

(sorry for the errors if any, I do not like the key board I am on it like small)

Wednesday, July 03, 2002 at 11:14 PM (CDT)

Evening everyone

Well here is an update on what this week has held. As I told you that on Saturday Stephan stepped on a nail, and on Monday I was taking in to Dr. Wheeler.

We had a 10:30 appointment and one look at his foot, Dr. Wheeler was wanting several test done, including a bone scan. I had called a friend to see if she could watch Christina and Josiah for the afternoon, cause I knew we would be busy. When I got back into the room, I was handed some papers and told to go to admissions and then to 7W.

That is right, Stephan was admitted right then and there. Thus I had to call our friend and tell her that I needed her to keep the kids until "further notice" if that was okay. She said it was. We met and I gave her Christina's evening meds, and told her I would go home later once things settled down with Stephan and get the kids clothes and the rest of the weeks meds for Christina. (Christi, if you are reading this, THANKS A MILLION for all you did this week!)

Anyway, shortly after he was admitted he had a IV put in place and off to radiology for x-rays and the beginning of the bone scan. We went back to the room and IV antibiotice were ready for him, then about an hour later we were back down stairs for the actual bone scan.

The doctors feared that they were going to have to take him to OR to have the foot actually cut on top and bottom to drain out the infection. But first they wanted to see if they strong antiboditics would do anything. The discission would be made within the next day if no improvement was made.

It was also questioned if he would be able to have the ASD repaired on Tuesday. Dr. Wheeler was going to call St Louis and discuss with them what was going on and what the lab test showed. Thankfully they are still planning on Tues.

Thank God that he did not need to go to the OR, and the bone scan showed that the infection was cellulituse(sp) and not in the bone. The next day his foot was looking better. Dr. Wheeler still did not want him on it.

Well it is now Weds and I had to leave the hospital about 5am to come home and get things needed, and then pick up Christina, she was scheduled to get her IVIg today. So Stephan was in room 714 and she was in room 715. I was not too sure how I was going to handle having them both there and both needing me. At first the thought was having them together, but with Stephan having an infection and her being immuno suppressed that was not going to be a good idea. Christina was a trooper today. After they got her line accessed and the IV going, I asked her if she needed me there right then, and she told me that she would let me know if she needed anything and that it was okay for me to be in there with Stephan. She is growing up so much. Of course once she got her IV bendryl she went to sleep, so she really did not need me, though I kept peaking in on her. She was a big help.

Dr. Wheeler came in this afternoon and looked at Stephan's foot, which was not swelled or red, and asked how he was walking on it, which by now was awesome (he was favoriting it, but was trying to use it). He said that when Christina was finished with her IV he felt that he would let him go home too, as long as I watched it. So the IV came out and script were wrote for some oral meds (2) and we waiting for her to get done. We left the hospital about 5:30 this evening.

So much for a week to rest up before heading back to St Louis.

As for any update on last weeks test and all on Christina in St Louis I will have phone converance with her doctor and nurse on Friday. Then we leave on Sunday afternoon to be there for Monday. Stephan is going to meet with one of the Child Life Specialist, and be shown around the hospital and shown what to expect fromt he procedure. He was a bit nervous before Monday, now we will see. Of course he did not like getting the IV. And he did not like it coming out either. I think that was the tape though.

I hope nothing else "exciting" happens between now and then. I would like a couple of days "off".

Have a safe and Happy 4th. I don't think we are doing anything special.

Later

Lori

Friday, June 28, 2002 at 11:15 AM (CDT)

JULY 1st

Just a quick update about how "boring" our life is. On Saturday my lovely son Stephan wanted to go play in some "weeds" at the church. Some where he is not to be. Anyway, we are adding on to the building and some boys decided to get some left over wood and some nails and try to build a fort. I don't know how well they did, but they left a board on the ground with a couple fo nails sticking straight up, and well you guessed it, Stephan found it, and the nail went through his tennis shoe into his foot. OUCH!

I was down stairs helping to get a meal ready for the guys working when somone can running down to me telling me that a nail went right through his foot. I ran up stairs and someone handed him to me. After washing the foot it looked like any nail wound. And it was not through the foot. We cleaned it and put an antibacterial ointment on it. Well by that evening it was red and swelling on the top of his foot, so off to the ER we went. He was given some antibotics and sent home. Well it is not two days later and the foot is no better, infact it is looking a bit worse so we are headed to Dr. Wheeler's again. I will let you know how it turns out. I don't want him to have infection, he is scheduled for his ASD repair next Tues.

On Monday he is going to get a tour of the hospital and the cath lab so he will know what is going to go on and where it is all to take place.

Greetings from St Louis!

Things here are going okay. We are hoping to leave this afternoon for home. So far there is no rejections and no infection, although the infection part can take up to a couple of weeks to see if anything grows. Christina did have some redness and inflamation in one of her airways, which could be from coughing, which she does from time to time, though we will see.

Her creatine level ( this is a kidney level) was elevated from the last time, though now a great deal, however it was enough to have nephrology to want to do a full kidney function panel. I am still now sure what all that involves, and it is yet to be scheduled, due to the fact that the nucluar med will be down for the next couple of weeks. They are also wanting to put her on Beta-blockers. During the Bronch her blod pressure was what I would say a bit too high, and they had to give her some paricardium (sp?) under her tongue to help bring it down. SHe will continue to take the b/p med she tackes now only adding the other in the evening.

Her PFTs were great, she still has a bitof restriction, but it is nothing new. So over all she is doing great. Right now she is in talking with Dr. Thomson about the "behaviour modification" thing.

I will be getting a phone call in a couple of days to let me know how everything actually turned out and then we are hoping to be able to lower some of her antirejection meds. I will keep you posted of any changes that may happen between now and the end of next week, just wanted to do a quick update.

Until later

Sorry for any mistakes I am not on my computer and I really do not like this keyboard :-)

Saturday, June 22, 2002 at 11:45 AM (CDT)

Happy Weekend everyone!

Well today is going to be a busy day for us. We have already been over to the new house and did a little work there and ran on a drink run for all of the workers. Now we are home and cleaning and laundry and getting ready to pack for this coming week, I have all her meds and things need for her port care and lab work packed, that is a big part of it to me, making sure I have enough heprin and saline and all the stuff that goes with it. ^ __ ^

Christina and I leave once again for St Louis tomorrow after church. I am prayinng that this is an uneventful visit and nothing goes wrong. Sometimes I wish that they can schedule the bronchs on the first day of the visit and then do all the other test after. This way you don't have to wait all "week" for the test and the results. But I guess all the testing is important so they know if there is something they need to be looking at during the actual Bronch.

Anyway things are going okay here right now. Stephan, I think is a little upset that his sister has to go to St Louis the same time he does. He was hoping to go by himself. I told him that he will be in the hospital with me by himself and not her she will be with a friend. I think he is okay with that.

I am so excited about the house. I only wish it could go faster. I hope to get some film later today when I go to the store to get some "drugs" and then get over to the house and get some pictures of it and when we get back from SL I will post them so all the world can see out blessing. It really is starting to look like a home, with rooms and all. The siding is finally getting finished today, and a wall is almost done in the main bath behind the tub. We had the cabinets messured out on Thursday and I can almost picture what the kitchen is going to look like. I can't wait, but I guess I have too. All good things come about by waiting.

Well I guess that is all I will try to do some updates from St Louis and let you all know how things are going.

Talk with you soon. Don't forget to let us know that you stopped by. Christina is learning a little geography when she see people signing the book from places other than MO, we look it up on the map/globe. She thinks it is cool.

Love ya,

Lori

Saturday, June 08, 2002 at 09:38 PM (CDT)

************NEW PICTURES************
***************FINALLY**************
********posted on June 12th*********
(June 12th)
Nothing new is going on, the boys have an eye doctors appointment tomorrow, and they both have told me that they can see. But, I told them we will make sure that they can see perfect. And glasses are cool if they would need them. So until later and something exciting happens, not that it every does :- ).


Well not much has happened lately. Not that I need anything else to happen :-)

Christina received her IVIg. All went well with it. Christina is becoming a little bunch of learning knowledge for some "docs" doing their resident rotations and are working with Dr. Wheeler. He loves to bring these new doctors into her room and leave them there for a couple of hours to talk with us. I am sure they walk away with some new knowledge. It is interesting to see some the their responses when I give them her history or mention a drug that they did not learn about in school.

Well, We have added one more test to Christina's visit when we are in SL, it really is not going to be hard, she is to have a CT (Cat scan) of her sinus. This is no problem seeings how she will be having a CT of her chest anyway they will beable to do it at the same time. Maybe we will be able to see why she has so many sinus problems. Also when she goes in July to see the endocrinologist she is now scheduled to see a new dermotologist for the fungus that she has on her body, it does not see to want to go away and is spreading. I joked that if it would spread in an even patch all over it might not look to bad, maybe more like a tan, instead of dirty skin.:-) I learned the other day that this is a fungus that most of us are exposed too, however we have the"T" cells or the "helper" cells to fight it off and to kill it. Christina's "T" cells are suppressed so she can't fight it off.

So I guess that is about it. There is no more. Wish there was, but there is not.

I will update when I have some more exciting news for you all.

Love ya,

Lori

Monday, June 03, 2002 at 11:38 PM (CDT)

( June 4th quick update.) I talked wih St Louis about Stephan today. It was a time trying to get him scheduled in. We were first looking at having him in the cath lab on the 26th, and I was like, no way. Christina is scheduled to have her bronchoscopy that same day. I think I would absolutely go crazy with one child in each procedure. So he is scheduled to have the ASD repaired on the 9th of July. Christina is scheduled for an appointment with endocrinology on the 10th. I think we will be able to work it out. I have to have a friend go with me to stay with her while Stephan is in the hospital, hopefully only over night. Dr. Balzer believes that he is a good canidate to repair the ASD via heart cath. I am so relieved. He said thought the quality of the copy of the echo he got was poor he was able to see the ASD. As of right now Dr. Hursh will do the procedure. He has done several of Christina's heart caths and angiograms. So I have confidence in him too. I am just happy to know what we are planning on doing now.

Thanks for your prayers.

HELLO EVERYONE

Sorry I have not updated recently. First an update on Christina.

She is doing fine, though her eyes are black and blue still, which is kind of strange for lazer. However, she has not complained. She is doing some coughing and a lot of throat clearing, maybe sinuses again. I took her the to the doctor on Thursday just to be safe, some kids here had strep. She was able to see Rhonda, Dr. Wheeler's Nurse Practicioner. She put Christina on an antiboitic and a cough "suprresant/expectrant decongestant and a alburterol type inhalor. I emailed St. Louis of these new meds and what was going on with her. The next day our cordinator called and told me that her Doctor did not want her on anything but the antibiotic. So we stopped it all, I called and let Dr. Wheeler know about it and he was fine, although the only new med was the inhalor and she has had albuterol before. St Louis will explain it all to me when we are up there on ther 24th. Finally, Christina is scheduled on Thursday to get her IVIg here in Joplin.

Now for Stephan, I had emailed Dr. Balzer in St Louis before going there with Christina and did not have a chance to meet with him while there. I did get a reply and emailed him back and then he emailed me back and I got a copy of Stephan echo cardiologram and sent it to him, he should have gotten it today. We talked Friday on the phone and he is willing to see Stephan and to repair his ASD. He questioned if it needed repaired first and asked me what the report said about his ventricals, I quoted to him that the right ventricle was enlarged. That answered the question on if the heart needed repaired. He is going to look at the echo and let me know if it is repairable via heart catherization. I pray it is. I have done some research on to the devices that are used for this, so I have a few questions for the doctor. I am hoping to have Stephan in St Louis next week, a lot will depend on the "sleeping people" as Christina says. Those who help you sleep. I will let you know as soon as I know when we will be going up there. Oh the hole is about 7mm or about 1/4".

Needless to say I am a bit anxious to get this repaired. I was not aware that ASD can lead to pulmonary hypertension and congestive heart failure. I knew that VSDs led to the pulmonary hypertension so at first I was overly alarmed. But now, I want it fixed ASAP. Stephan is very active and has no symptoms of anything being wrong with him. He has good oxygen levels and all so I am relieved at all of that. Of course Christina had a few other defects with her heart and she was born with the hypertension already and her little body learned to compensate for it before birth. But still in all after going through all we did with Christina I want to take no chances with Stephan. Or Josiah. I had him checked out too and so far everything looks good. I am going to take the EKG to St Louis with me and have Dr. Balzer look at it too.

I know I sound like a worry wart and okay so I am. But it was me being a worry wart that got Christina dx and now Stephan. So, I guess it pays off, at least for me. So I doubt that I will ever let my guard down. Sorry all of you wonderful people who have told me that I need to relax, I don't know when I will relax. I was going over my schedule with a friend in SL when we were up there and she noted that there was not a day on there with my name on it, It has doctors appointments, ball games for the boys, etc. I informed her that though I was told last Dec. that I needed to make time for me, it never happened and it more than likely will not happen. I know I am hard on myself. But hey, I have three kids who need me and I will be here for them. They, though a trial at time, are my life and my joy. It is for them that I life. I can imagine life without them. I told Josiah today, when he was not playing were he said he would be at the ball park and we had to look for him. That I can't replace him, God only gave me one Josiah. I told him I knew he thinks that I am mean and whatever, but it was because I worry as to what he is doing and who he is with. I want to be able to trust him and I want him to know that I can trust him. I told him that I love him to much to let him just do as he pleases. It is hard for him to understand all of this I think. He is trying to deal with it all, but I am not too sure how well he is doing. Please pray for him. It is hard on a 10 yr old to be without a daddy and only a mom, who face it is not a tom boy I try but I don't think it is quite the same, and who is back and forth to St Louis a lot, and at times I never know when I will have to go. Christina and I being gone for so long was very hard on him, and he still has not regroup with it. And now I am going to be gone with Stephan. It is hard. I am trying to plan some time where maybe he and I will be able to go somewhere for the weekend without his brother and sister. Although I am sure it will have to be sometime in July. I have not mentioned this to him yet, I don't want to get his hopes up too high. Just pray that it works out.

There I go again down loading on all of you. I am so thankful that I have this site to be able at times to do so. I covet all of your prayers. Without them I will not make it, it is only by the grace and mercy of God that I do.

Well it is late and I need to go.

Love ya

Lori

Wednesday, May 29, 2002 at 10:55 PM (CDT)

Hello everyone, thanks for stopping by.

Well Christina and I are home now. She did fine through the eyelash removal. She has a couple of black eyes, not too bad. Although this is something she did not have the first time. We talked about sending her doctor a thank you card tell him, "Thank you for doing a great job and thank you for the black eyes"

I asked the doctor if he thought this time would take care of it and he thought it would, he did a little more than just "burning" the folicles he cut some of them. Plus, there were not as many as the first time. She already says that they feel better. So it was worth having it done.

As for Stephan nothing new yet, I did email Christina's cardiologist in St Louis and he is willing to treat Stephan too. I emailed him again tonight and asked him if he thought I would be wasting the cardiologist's time who he is scheduled to see from Kansas City, knowing that I am planning on having Stephan treated in SL. I will await to see what he says and then do accordingly. I figured he would know how a doctor would feel if you went to see him knowing that you were not going to have treatment done where he practices. It is not that I do not like this doctor, he is awesome, it is just that I feel more comfortable having Stephan taken care of by the same people who were so awesome with Christina. And I think it helps him too. It seems the boys are a little more nervous about it all than she was. But then she was one 2 when she started all of this and Stephan is 7 and knows a little bit more, and sometimes finds it scarey.

Well I know this is short, but that is all for right now. I hope to get a reply from St Louis soon. When I do I will let you know what our plans are.

Have a good day/night

And again thanks for stopping by, it helps knowing that there are others who read this and care and are praying for us.

God Bless

Wednesday, May 22, 2002 at 10:58 PM (CDT)

Well, only two more days left of school, yea! Tomorrow we are taking the school on a field trip to a drive thru saffari. It a real cool place, I don't know of a child who is excited, well okay, maybe a couple of the high schoolers are overly excited, but it is better than having to do any school work. Friday is the kindergarten and 1st grade graduation and awards ceramony. Everyone is wondering who is going to get what trophy, and most of all who is going to get the prized "PASTOR'S AWARD" this is a tophy that stands approxiamently 1.5', maybe a bit more. It is beautiful trophy, and I know all of the kids wish they can have it, but it is hard work to receive it, this does not only cover acedemics, but much, much more, and only the Pastor picks the student. Us teachers don't even know who is going to get it. We know all the others, but that one I can honestly say we can only wish we knew.

On Monday Christina and I are on our way back to St. Louis for her eye lashes. I think she might be a little nervous about it this time, not sure why though, she keeps asking me as to what day she is having it done. Which is Tuesdy the 28th, so please pray things go okay, and she has no problems.

I took Josiah, my oldest son, to the doctor yesterday to have him listen too and Dr. Wheeler ran an EKG and did a chest x-ray and things looked good to him, thank God. He did recommend that I have the cardiologist just look at the EKG and listen to him, just in case he was missing something, but did not think he was.

While there I questioned him as to what the cardiologist said about the size of Stephan's ASD, and Dr. Wheeler told me that it was something they felt needed repaired and not left to be watched. So I am almost anxious for June 7th to get here so I can talk with Dr. Gelatt, and see what the plans are. I still plan of having anything that needs to be done, done in St Louis. Even Stephan wants it done there, he would like to have the surgery who gave Christina her new lungs. I guess in his mind he feels that Christina is doing good, then he will too. He does not seem to upset about it all and kind of like whatever happens will happen, as long as if he wants me too I can stay in his room and sleep with him. I told him that yes I will be able to be with him all the time, only when he is in ICU right after the surgery (if he is) I will not be able to sleep in there.

Christina has been a great help in this area, I believe she is calming some of his fears. Like he was afraid that if he had to have surgery that he will be in alot of pain, and she made sure he knew that if he was hurting even a little bitty bit, he could tell the nurse and she will give him some medicine to take all pain away. And she told him that if he was in ICU someone from the play room will come down and play with him, cause he could not go up there, but that once he was in a regular he would be able to go up there and play and do all kinds of crafts, (I don't think he will be into all the craft progects like she is).

I also learned, thanks to Wheeler getting his book out on heart defects that an ASD can lead to Pulmonary Hypertension and Congestive Heart Failures later in life if left untreated.(That was something I did not like hearing) I knew that a VSD (hole in the lower part of the heart) can do that. One thing I really appreciate about our doctor here, is he makes sure I understand just what is going on with my children. He never leaves me in the dark and if he has a question about something he is not afraid to say that he will have to look something up or ask someone. I can't thank the Lord enough for a set of wonderful doctors, they are all so great.

Well that is about all there is right now, there is no more. I hope to update later next week, though it might be from St Louis or right after we get home sometime mid week. Until then you all have a great and safe weekend and have fun.

Stop by and sign the guess book, I have to work on getting some new pictures up I know, and as soon as I get a chance I need to do some cleaning of some files and then do some more scanning, I will go and try to get one up there of all three of the kids and then you will be able to place a face with the boys.

Thanks for stopping by

Lori

Wednesday, May 15, 2002 at 05:04 PM (CDT)

Hello everyone

Stephan had his echocardiogram yesterday, Tuesday the 14. Dr. Wheeler called this morning with the results and what I thought I saw was true. Stephan has a ASD or an Atria Septum Defect. He is scheduled to see Dr. Mark Gelatt on June 7th at 10 in the morning. Dr. Gelatt is from Children's Mercy Hospital in Kansas City, MO. He also was Christina's cardiologist before he referred us to St. Louis Children's Hospital. He is an awesome doctor and one of the best in my book.

I did let Dr. Wheeler know that if anything needs to be done to fix the defect I want to have it done in St. Louis. I am hoping this will not offend Dr. Galett. I would like for him to remain Stephan's "local" cardiologist; however, I know the the thoriaxic team in St. Louis and I know how the work, and they know me. Thus that is my reasoning for wanting him there. Not only the doctors in St Louis but also all of the nurses in the surgical rooms and on seven west. Also, I can schedule Stephan's and Christina's appointment together if necessary.

Please pray that things will move along smoothly. I have discussed this with Stephan yet, I don't want to put any fear in him. So far he knows there might be a chance that he has a hole, but that a murmer can also be an abnormal sound in the heart.

I had a friend tell me that I was doing better than she would if we were in each other shoes, but I believe that God gives us all special strengths to handle each day as we need too, no matter what the situation is.

I am going to question Doctor Wheeler about checking Josiah, my oldes,t out for any heart defect, so far we have a 2 out of 3 with defects. I just want to be safe and deal with anything that I have too all at one time.

Thank you all for you continue prayers.

Lori

Friday, May 10, 2002 at 11:11 PM (CDT)

Evening everyone

Well I finally was able to talk with Christina's doctor in St. Louis this afternoon. (They have consulted her neurologist too) The behaviour she is having is a result of the cyclosporine drug she is taking. This is an immunsosuppressant drug, that she will have to take for the rest of her life. There is one other that they can trade with if necessary; however, it will not change this behaviour. Not all children experience what Christina has, there is a small group of kids that are like this. So, it was recommended to me to have her see someone about "behaviour management" . So I talked with Doctor Wheeler, her peditrician here and he found me someone today. He is an awesome doctor. She will see a pschyologist on the 23rd of this month. Her "picking" at things is one way she may cope with the "tingling/burning" feelings she has in her figners, although that is not for certain.

We really have no other drug that we can use and this is a matter that needs attention right away. I am having somewhat of a hard time understanding it all. I plan on writing the company of Cylosporine and asking for other side effects that are least common. I was told today that this was a behaviour that she can not control. It is almost like a Tic Syndrome, but worse. Also, that I need to watch her fine motor skills, sometimes it can interfer with them, and if it does something will have to be done. So this is another bump in the road that with the grace of God we will manage through. He has helped us so far with Christina, I still have all of my senses and am coping, what I think, very well with it all.

On another note. Stephan, my 7 year old son, has been complaining of chest pain for about two weeks. I talked with Dr. Wheeler's office on Weds. and they told me to try TUMS and see if it was heart burn. You know how us moms are, we think we know what is wrong with our child, and I knew he did not have heart burn, anyway we scheduled him to see the doctor for this afternoon at 3:45.

Doctor Wheeler looked him over and listened very carefully to his heart, and asked me if I was ever told that Stephan had a murmer. Of course I was taken back, and told him "No". He had detected one. He of course by listening could not tell the size of it. After all Christina had two very large murmers and they did not hear them, Mainly because they were so large, there was nothing to hear, the blood flow in her heart just went from the right side to the left. No real lub dub type of sounds.

Anyway, back to Stephan. Doctor Wheeler said he wanted an echocardiogram on him as soon as he could. Because of the family history. He did say that he did not have the same thing Christina had, of that I could tell. However, here comes the worring mom again. If he indeed has a murmer, and it is in the Ventricles what is there to say that it will not cause what Christina has. After all a ventriclur septal defect can bring on pulmonary hypertension. (See I am worrying) I know that there are "functional murmers" and they really do no harm and some kids out grow murmers. However, if this murmer is in the ventricle, I will want it fixed. I don't want to play with chances. So I will have to wait until Tuesday to have it done, and then wait for Dr. Mark Gelatt, Christina's first cardiologist, to look at it and let Dr. Wheeler know the results. I may be a long week for me. If it is something that needs repaired, I am all for it. I will tell them, that I want it done in St Louis. And that I want Dr. Charles Huddelston to do the surgery. I like Dr. Gelatt, he is an awesome Doctor, but I know the hands of Huddelston, I have a little girl still thanks to him, and it is he who will do anything that may be needed for Stephan.

Please pray we do not get to that point. I do know that some murmers can be fixed through a simple heart catherization and the child does wonderful afterward.

Please pray for Josiah too, although I have not told him everything about Stephan yet, I am sure he feels like something is wrong, I can tell by his behaviour that he senses something, and has for a while. I am wondering if i wought to get him checked too for something like this, or do you all think I am just worrying a little to much. He seems to be good, he has more headaches than the others, I think he needs he eyes checked again it has been a while and he loves to read and will read for what seems like hours if he has the right not, "Left Behind Kids Series". Just remember him as you pray for the others. Thanks so much!


Thanks for taking the time in stopping by. I hope you have a great Mother's Day to all the mom's who are reading this right now, and hug you kids real big. They are wonderful.

Lori

Friday, May 03, 2002 at 11:59 PM (CDT)

Evening everyone.

Well, anyother week has past and things are all pretty much the same. Only 15 days left of actual class days of school. YEA!!

The boys are now in baseball and having a time, trying to keep up with all of the practices and everything else is about to make me crazy, but hey they like it so that makes it worth it all.

Christina is doing okay, not a whole lot is changed, her eyes bother her a little more, I guess the lashes are just growing. She is also having some "nervous" behaviour patterns. I say nervous because I don't know what else to call it. She seems to have this need to pick at things. Anything if it is fingers, paper or a styrofoam cup, you name it. It looks like someone throw confedi (sp) at her desk by the end of the day. She also is having burning, tinkling feelings in her fingers, this is from the cylcosporine. But as for the other I am not sure. Right after her transplant she did a lot of picking, we painted her nails so she would not pick her skin, and she would have the polish off with in a matter of an hour. I have also "caught" her chew her tongue, I guess that is what she was chewing, that or the inside of her cheek, she had nothing else in her mouth. If she does not have anything to pick and will pull at her ears or pop her knuckles. (If anyone has an suggestions, please let me know, EMAIL ME). I have emailed her tx cordinator and she was going to pass all of the on to her doctor and see what she says. So once again I wait to hear from St Louis. She is schedule to have her IVIg again this month on the 9th, next Thursday, so I will have a chance to talk with her Doctor here. And then off to St Louis on the 27th for her eye surgery on the 28th.

Anyway, with school almost out, our house coming along, and everythink "normal" I guess I will let you go for now. First; however, I have a list of some special kids still waiting in St Louis for their transplant. PLEASE PRAY FOR THEM, SOME OF THEM ARE VERY SICK RIGHT NOW.

BRANDI (needs liver and lung tx and is now in icu), KAYCEY (needs heart and lung tx), and KYLE (needs double lung tx). Thank you for praying

Thursday, April 25, 2002 at 03:59 PM (CDT)

Hello everyone

Things here are going along okay, not a whole lot to report to you. Stephan has been having problems with his allergies this past couple of weeks. I told him that was trying to catch up with his sister in the number of medicines that he is taking. Right now he has 4 different meds just for allergies. Oh the joys of doing drugs.

Christina's eye surgery is scheduled for May 28th. We will have just gotten out of school by then. The other teacher is very happy to hear that I will not have to miss being at school again this year. Seeing there are only 4 weeks left of school, YEA!!
It is hard to believe that the school is almost over, this year has gone fast, especially compared to last year. Not that I am complaining or anything.

On Tuesday evening we (Christina and the boys and I ) attended a Celebration of LIfe, with the midweste Transplant Network. There for people there who were waiting for tx and those who have had loved ones who donated and those who were txed. I was asked to say something, and all I was able to say without crying was THANK YOU to all those give the gift of life. Christina was the only child there, so I was speaking for all of the moms and dads.

Did you know that right now there at over 80,000 waiting for tx, and about every 17 seconds a name is added to the list. It makes me want to get out there and tell everyone to think about organ donation, one person can save the lives of 7.

Well just wanted to stop in, talk with you all later

Lori

Saturday, April 13, 2002 at 09:36 PM (CDT)

4/17/02
Hi all, a quick update. We heard from Christina's eye doctors in St Louis. And yes they are wanting to remove the eyelashes again. I told Christina and she was said, "Oh Well, at least I will be asleep" She is so brave, I would get so tierd of being poked on all the time. I think she keeps me going sometimes.

I am not sure when we are scheduled yet to have it done, the surgery center is to call me and let me know. I am hoping toward the end of May, but whenever will be okay. I am blessed to beable to work with my doctors appointments and teaching at the school. I try to be flexible with them, because I know there are some parents who can't take off like I can.

Just thought I would let you know what we found out. Have a GREAT Day!

Evening.

Well today is Christina's 9th birthday. We did a little party with family and next weekend planes are for a "big" party with friends. The theme of her party this year is going to be a "Fashion Show", she has informed me that everyone needs to wear gloves. I am so thankful that we are celebrating 9 years, when I look back to before her tx, I don't think she would have made it this far if she was not txed when she was. THANK YOU JESUS!

As you might have guessed we are home. Things are looking great for her. Her Doctor is very pleased at the way she looked. I believe I told you all that she did not need to have the bronch done, thank God. All of her test came back looking good. So we do not have to go back to St Louis until July, when she will have her 18th month Bronch and she will then see the Endocrinologist. We were hoping to lower the predisone down to 5 mgs, but on Thursday her doctor told me not yet, so hopefully soon we will be able to.

Christina saw the eye doctor on Friday and thankfully she did not need new perscriptions this time and the pressures in her eyes are within okay levels for her. She will though have to have something done once again with her eyelashes. Yes, they are growing back, how or why is the questions, she might be getting new lash folicles, not sure, the eye doctors are were going to be talking about what they want to do and get back to me and let me know, right now they are thinking about removing them as they did before. I was told again that they have never had a child who had problems with their eyelashes like her. But, then they need to realize who they are talking about.

Here is a quick update on the house building for those interested. Today we put in windows and doors and locks. Also the electrical wiring is just about done. It is ready to have some of the breakers turned on and we will have power in the house and not only at the pole. All of the walls are up now with the exception of a small closet in the kitchen area, but I think when the cabinets goes in it will go in with them. We finally decided on where to place the tub, sinks, toilets and shower (in the master bath) too. We are so happy that things are moving along so smoothly.

Well that is about it right now. I will let you know what they decide about the eyelashes when I hear from them, I might just add it on to this entry. Don't forget to sign the guess book. And I promise to get some new pictures on soon. I will get lots from her party on there too.

Have a great Day or Night

Love,

Lori

Wednesday, April 10, 2002 at 01:48 PM (CDT)

Hello, Well we had great news yesterday evening, NO Bronch for Christina today. We were so glad. Things are going along just fine, tomorrow she is going to get her IVIg and an IGG level before it is started and then on Friday she will see the eye doctor and then home. So far we should not have to come back until July. She will then see and Endocrinologist (sp?) And possibly the ENT.

Dr. DelaMorena is going to monitor the tingling/buring feelings in Christina's fingers and if it continues then we will doan MRI. I am going to meet with her tomorrow while Christina is getting her IV.

I am so thankful for the reports we have gotten so far. Why anyone who ever doubts that we serve a prayer answering God is beyond my understanding. I know it is only by the grace of God that she will be celebrating the 9th birthday on Saturday. For her birthday she picked out a Mary Kate and Ashley outfit with new shoes. As for her party we are not sure what she wants yet. That will be celebrated sometime next week.
Thanks for stopping by, I will let you all know what her doctor lets me know tomorrow. Have a great day

Tuesday, April 09, 2002 at 01:38 PM (CDT)

Hello from St Louis!

Well here we are in St Louis for our evaluation. So far things are going okay. We are waiting to hear from some test results and if they are good Christina will not have to have a Bronchoscopy. I hope to know later this afternoon. If she is to have it, it will don't tomorrow morning.

Dr. De la Morena, Christina's main doctor here is wanting to her see an ENT and another doctor who is an Endogrinologist. We will see when that is all scheduled. Also, she might be ordering a MRI for Christina due to the fact that she is still havin tingling and burning in her fingers, she said something about the Cyclosporine can cause interference within the nero path ways. I guess we will see, so far though things are looking good.

Well, that is about all right now I will update you all later on what we find out.

Thanks for stopping by

Lori

Friday, March 22, 2002 at 10:45 PM (CST)

Greeting one and all. It has been a very busy week. Christina is now back in school, so please pray she stays healthy.

The reason she is back is for reasons I will not mentioned here, the principal and teachers quit, all I will say here is when you get your eyes on man and off of God, thing happen that should not. So I am back to teaching at the school. To be honest it has been the best week for me in the entire school year. The kids were all great!

Our schedule for St Louis has changed because of this too. We are now going the second week of April. The reason for this is ACE (Accerlerated Christian Education) has conventions in which the student compete in areas such as art, pe, music, poetry, etc and our students had planned on going and particiapting in some of these events. Thus, I have been chosen to take them, it is only in Springfield so it will not be that bad, there is also another person going to supervise the boys. It looks like it will be a busy but fun week. It will be a good time to spend with some of the high schoolers who are still wondering what all happened in the school and in the church.

Christina seems to be doing good, I am a little concerned with her wt, she seems to be retaining some fluid, at least that is what I am observing, but if you know me by now, I watch and worry to much. Anyway she was weighing in at 70 pounds this morning that is a 2 pound jump in just one day. Sometimes at the end of the day she usually weighs 69 - 70 pounds. I told her we are going to watch more closely what she eats and what she drinks. I am going to start pushing more water, something which she does good with usually anyway, but she is going to start drinking more. If she continues to look puffy and what have you then I will talk with her doctor here.

Our house now has rooms and a roof (almost). Tomorrow the rest of the decking and the tar paper is going on (shingles should be in by Monday) and the rest of the walls should be going up. We had a groups 12 wonderful men and women here this week from Hudson Wisconsin, and they worked from 8-5 each day (except Tues., it rained all day). It is wonderful to watch, when just Sunday all we had was the foundation. So if you all are reading this, a HUGE THANKS AGAIN FOR ALL YOU DID :-)

The kids are getting excited about the house. They were playing in the bedrooms today and walking through the closets and all, it is fun to watch them. Of course I would be lieing if I said I was not excited. It is amazing all that is happening right now.

Well, I guess I really ought to go. Hope you stop by and sign the book, It is neat to see all that have been signing it. It is encouraging for us to know that their are so many people out there that care and pray for special kids like Christina and all of the others like her.

God Bless

Lori

Saturday, March 16, 2002 at 09:42 PM (CST)

Evening everyone

I hope and pray you all are doing fine. Everything here is going along okay.

There really is not much to update about. Christina had her IVIg on Thursday and slept most of the day. This time she did not react to the Benedryl, like last month. She did slept and without attitude :-)

We are getting ready to go back to St Louis on the first. So we will leave here late Easter afternoon. I just can't wait to get on the road again. NOT, It has been so nice to make it two full months without having to go to St Louis. It almost feels strange.

I heard some sad news about another child, who met the Lord, this child had cancer. When I hear things like that my heart aches for the parents and then it makes me so much more grateful for what the Lord has done for us, for Christina. I am so blessed to be given a second chance with her. We talked so much about how these kids are given a second chance and they are, but we as parents are given a second chance with them too. A second chance to love them, to share with them the wonders of life, to lead them in the ways of God.

There are times, like today, when I stop and think if I am doing my best with the second chance I have with Christina. What about the first chance I have with her brothers. I am going getting one chance with them, am I doing all I can to lead and teach them. It is hard as a single parent to play both rolls. I want to be the best momma they can have, but I also want to be the best "daddy" they can have.

I was talking with someone today about that, and they asked me if I was going to get married again, I told them I don't know, but what I do know is what God has intrusted me with for now, I don't know why, but until that day happens, if it ever does, I will keep going and doing, and try to do better each day, show the kids more love, more understanding and if it means having to wrestle with the boys then that is what I will do. We have made it 6 years thus far and I think we will make it longer with the Lord's help. He promised me that my children will know the peace of God, this is in Isaiah.

I really don't know why I am going on like this tonight, I guess my heart is heavy, I want to be the best I can for my children. Many have lost the chance they had. Many today are asking "what if", "why did I do this". I don't want to have to ask those questions, I want to know now in my heart that I am doing the best I can for all three my children. I don't know what the future holds for Christina, only God knows, no Doctor or specialist anywhere can tell me what it holds for her. But I know that I have been given a second chance with her and I will not waste it.

Please, I beg you to keep all of these special kids in your prayers, there are those we know waiting for tx, some we know with cancer and other illnesses that needs God's hand to move on.

Some of the kids we know that are waiting right now in SL for tx are:
Kaycey, Kyle and Brandi there are others there now too, some I don't know. But, please pray for these, they are in great need, I would love to see God move and all three be transplanted within the week. It can happen I know, Christina was.

Thanks for taking time and letting me spill what is on my heart tonight

God Bless

Lori

Monday, March 11, 2002 at 10:14 PM (CST)

Hi everyone, just thought I would stop by and let you know I received a reply from Christina's Neurologist. He does not feel like the congnitive issues are related to the previous TIA's. But that she should be scheduled for a neuropsychology retesting to check on these cognitive issues. I will discuss this with Doctor Wheeler on Thursday when she goes in for her IVIg.

I was working with her today on some spelling words and even after writing them all five times and spelling them repeatly to me, and going on to another word and doing the same, then going back to the previous word, she still had problems with spelling it.

I don't know if they will be able to do the testing here or if we will have to schedule it in SL. If so I will try to get it done when we are there the first.

It is funny, how once a transplant or something like this occures, you want every test or whatever done there and you want the team to know exactly what is going on in every area with your child. I will say though I have relaxed in a lot of areas with her and am not leaning on the group in SL as much.

Well I believe that is about all for now. I will let you know what her doctor says about the testing. Hey there is never a dull moment around here with her and the boys, what can I say.

Have a great day

God bless

Thursday, March 07, 2002 at 10:26 PM (CST)

Hi everyone, hope this finds you all doing great. Things here are moving along normal. Can you believe that! Christina seems to be doing fine there is not changes in her at all. She, still does not like home schooling, you know momma's make the meanest teachers. But, she is doing her work, though easily distracted by the happenings around the house. She has her own little work area and everything, but it is still not the same as being in school.

She went to school yesterday to take 4 test, she was in the library taken them and she could hear some of the kids on their PE break, she wanted to go play so bad, but she knew I was awaiting her to get done so she worked hard and past all four of them.

I am having some concerns with her retaining information. Especially things like spelling words or even her scripture verses. If there is a lot of something for her to remember she hads a hard time with it, short term, like from the point she memorized one thing to her quoting it to you is okay, but when there is a list of things she has a real hard time with it. I am wondering if it is not a result of the TIA's she had before her transplant. I am going to try and get an email to her neurologist and see what he thinks. I may just a worring over nothing like normal.

Well I guess that it about all there it right now. Oh the blocks are going up on the house it is so exiciting the kids and I are actually almost able to picture it coming together. I think we will go over there tomorrow afternoon and actually see if we can't figure out where each of the kids bedrooms are. They can't wait, all three of them are already asking if they can have a sleep over. Christina was wanting on for her birthday next month in our new house. I told her maybe next year and that I doubt we will be in the house on her birthday.

Got to go and get to bed.

Glad to see so many are stopping by to check up on Christina, she can't believe the number of visitors when I tell her what it is from time to time.

Don't for get to check out someof the new pictures post on March 5th


God Bless

Saturday, March 02, 2002 at 01:52 PM (CST)

NEW PICTURES CHECK THEM OUT, OH WHAT FUN IT WAS IN THE SNOW!!!!

Hey everyone. Well it is now March 2 and we finally got some real snow. The boys are outside right now "snow boarding".

Christina had a chance to go out to for a little while, she was really dressed for it, I had at least three layers of clothes on her. She also wore a face mask, I am not too sure what the cold air would do for her, it was only 23 degrees out. Thus I did not let her stay out more than 30 minutes. Right now she is on the tread mill walking. She is not too happy with me that I increased her time from 30 minutes to 45 minutes.

All three of the kids had a blast last night when they got to go with a friend to eat pizza and then roller skating, they told me who they saw there that that knew and that they fell down quite a bit. They were real loud and excited when they came home. Me I had a nice evening at the mall and then met a friend to eat and of course had to hit Wal-Mart, then came home and waited on the kids. I think it took them almost 30 minutes to calm down enough to get ready for bed.

There really is not much going on here right now out side of the snow. Grandpa went to Wal-Mart for me to get some picture developed, as soon as he gets back I will scan them and up date the page.

I guess I will go and check on Christina and see if she is still going at it.

Talk with you all later

Lori

Wednesday, February 27, 2002 at 10:42 PM (CST)

Evening. I hope you all are doing fine. I thought I would come by and say hi and do a brief update, seeings how it has been about a week since I did.

Things here are going okay. I take Christina back to the dermotologist tomorrow morning at 8. She is to get her stiches out and see how the "rash" is doing. She has all but totally lost her perm because of the medicine that we are using for it. Oh, well, she will get use to having "straight" hair, actually it is only part straight and part frizz. I will have to work with it once we are done with the Nizoral.

After the doctors office we are to go eat breakfast with some good friends. It is kind of, well I really don't know what you would call it. See, tomorrow morning marks the 6th anniversary of Richard's death. (this was my husband and Christina's daddy). One of his favorite places to eat was Denny's and that was were we ate that morning. So, I guess that is where we are going tomorrow. I told his friend that he was going to have to order a Grand Slam and substitute the eggs for a Belgium Waffle, just like Richard did. :-)

There really is not much else going on. All the kids are on Spring break this week. On Friday a friend of ours (remember about the plan ride, well it is him and his wife) they are going to take all three of the kids out on Friday afternoon to get pizza and then they are going to go roller skating. I hope he knows how because they don't. I am to go out and enjoy myself. They told me this was mom's time for herself. WOW I have not had that in a long time. I have asked my friend Christie to get her husband to watch her kids and go and have fun with me. So Christie if you are reading this, now you have too :-)

Our house is coming along. The foundation is poured and the blocks are next. I am praying that the weather will hold off. They are calling for snow this weekend, but I hope they are like so wrong. On the 18th of March a group of men are coming in to do the framing and roof. I can't wait until that happens. I might have to buy some things for the kids bedrooms Friday at the mall. The boys room is going to be in a nautica theme and Christina's is going to be in a garden theme. I want to use a picket fence all around her room. For the main bathroom I am going to do early Americana theme. Of course my kitchen is in apples.

Well I believe that is all I can think of to write. I am glad to see a lot of you are visiting the site. Christina thinks it is neat to see the numbers change.

Hope you all have a great day. If things change with her soon I will be sure to let you know. Right now she seems to be doing fine. She has a little nasal thing going one, but she is much better than she was and her pulmonary fuction numbers are back to where they were before all of this sickness hit her, maybe homeschooling is helping, I don't know. Until later then. And so much for a "brief" update.

Lori

Thursday February 21, 2002 4:04 PM CST

NEW PICTURES OF CHRISTINA. THESE ARE OF HER AS A BABY AND A TODDLER, SHE WAS SO CUTE, JUST LIKE HER MOMMA!

Hello everyong. Well the results are in. At least what they think it is. The dermotologist said that the discoloration is a fungus. Yep, your read it right. A fungus. I guess it is some type that adolescense get. I never got it. And Christina is not an adolesenct yet. He thought that maybe it was brought on by the meds. I asked her cordinator in SL if it was possible for the meds to brings it on early and she has never heard it happening.

Trust me I can wait for her and puberty to meet. I am not sure if I want to be around for it.

She is doing okay right now with home schooling, though it has only been two days. I told her that for her PE time she can do her tread mill. I will not tell you all that she said. I think she thought that I would let her off of the hook for PE. Aren't us mom's mean. :-)

She was walking on it yesterday and I told her that if she would walk with her belly sucked in and her bottom tight, she will look skinny and she will have good muscles as she grows up and will not become like most of us middle aged people, :-)

I think she is starting to get another sinus thing going on, I will wait and see she is blowing and sniffing alot again.

Remember that perm I told you all that she got, well I guess she is about to lose it. The medicine that I have to bath her in will take it out. I warned her that she will once again have straight hair. She asked if I was going to get her another perm. Of course I told her "No". I did tell her that I would get mine straighten though, something I was planning on doing.

Well I guess that is all for now. Monday is a busy day for us. I have to get all three kids to the dentist at 8 am and then while the boys are in there, leave them with a friend in the waiting room and take Christina over to Dr. Wheeler's office for another cyclosporine level, then back to the dentist where it will be her turn. I hope they will be able to help with her gums. One of the side effects of her meds is swelling of the gums, she has that pretty bad. In fact she had some lose teeth that were ready to come out, but then the gums swelled up and they are now tight again, these are baby teeth and the perm. teeth are in already, thus her mouth is a bit crowded for space. She already knows that she will need braces, she asked when she will be able to get them, I told her she will have to ask the dentist and see what he thinks. I hope Josiah will be able to get some soon.

Well, that is all in my "boring" life. You all have a great day or evening, or even tomorrow. I must go and feed my starving children. I hope you take time to enjoy the pictures. Don't forget to sign the book. I read them to her from time to time and she wonders why there are not many new ones.

Have Fun

Lori

Tuesday February 19, 2002 1:37 PM CST

NEW PICTURES OF CHRISTINA. FUN TO SEE HER AS A ITTLE BABY AND THEN AS A TODDLER. SHE WAS (and still is) SO CUTE. IT IS A MUST SEE FOR ALL HER FANS!!


Good afternoon

Well, we just got home from the doctor's office, both the peditrician and the dermotologist.

First, we (Doctor Wheeler and the school and myself) have decided that Christina ought to be home schooled, once again, this is to help her from getting sick, as she seems to have a hard time with this. Christina was not real happy when I mentioned it to her, she really enjoys school and finds home schooling boring. She says she does not get the breaks that she does in school, and there is no one to play with. I believe she understands the reasoning behind this though. She is feeling some better, no more vomiting or other. She still does not have much of an appetite yet, but at least what she is eating is not coming up again. One of the reason's she receives the IVIg is to help boost her immune system, I would hate to see how sick she would be if she was not getting it.

I believe too, that we ae going to start her getting her IVIg in the doctor's office, he asked me today if I had a problem with it if they were to bring in a recliner and an IV pump and give it to her there, this way she will not be exposed to other children in the hospital that are sick with the flu, etc. I have not problem with that, anything to keep her healthy, I am willing to do.

I think I understand some about what they are looking for with the skin biopsy. It is where the transplanted organ's immune and the immune of the host (being Christina) conflict. Thus the discoloration on the skin. We will not for sure if this is it for at least a week. Right now we are treating her with a topical steriod cream which we are applying twice a day.

That is about all there is for now in our not so boring life.

Hope you have a great day!

Friday February 15, 2002 10:14 PM CST

Greetings
Christina looked forward to being at school yesterday, it was to be her first Valnetines day home in the last three years, two years ago she was in St Louis being started on Flolan and then last year she was in ICU recovering from transplant. However; Christina was once again hospitalized this week. We just got home about one hour ago.

She started complaining of stomach pains and vomiting on Weds night, and then woke up yesterday doing the same only with diarrhea. We went to see Dr. Wheeler and thus she thought enough of him to vomit three times in his office, so thus it was to 7 west she went as a patient. She was started on IV antibodics and fluids around 10 am. She was given something to stop the vomiting and slept most of the day.

Today she received more antibodics and then her IVIg (which was scheduled for today). Dr. Wheeler came in this evening and saw she was finally eating (the first thing in two days) and asked me if I was comfortable with taking her home, of course I was ready. So, we were finally allowed to leave about 9 this evening, we had to wait for the IVIg to finish.

She seemed to react to the benedryl this time, she became whiney and cranky, unable to relax, she was sleepy on top of it all, she was almost hateful at times. Finally she did go to sleep, then she received it again about 4 hours later and she reacted the same, only not so restless or hateful.

I have to call the dermontologist office on Monday to get her scheduled for a skin biospy. He feels it is something to do with the host/graft thing from the transplant. I will have to let you know more when I know. The discoloring of her skin is starting to spead more onto her back and chest, and some on her legs. I guess we will see what they think. St Louis says it is okay for it to be done here as long as some of the tissue is sent to their pathologist too. Have to keep things in check and balance.

Well, I believe that is all for now, I am so ready to get to bed, my bed, one thing about St Louis the "parent's" bed are much more comfortable than here. Of course I don't know any parent who really can sleep in while in the hopsital.

Hope to see that you all have stopped by.

Lori

Monday February 11, 2002 4:51 PM CST

Hi

We have gotten some good news this afternoon. Dr. Wheeler called me at school and let me know know that her lab work came back normal, PRAISE GOD. I guess that means that we will see a derminologist next.

Today has been an excited, first we had the new station at the school for the morning. It was funny watching several of the students, when the camara was in the learning centers. Some of little kids kept turning around and wanting to get in view of the camara man, and some of the older kids wanted in it too, but they were too cool to really act like it. The older girls were all concerned about their hair dos. It was something new to them. All the while Christina, being an old hat at this, acted like they were not even there. She kept on with her school work and even rolled her eyes when the camara man followed her to the scoring table.

After all settled down, this afternoon the reporter from the Joplin Globe called and finished his interview. All of the kids in the high school learning center were all ears, I guess they were hoping to hear something new. I don't know. It was fun for them though.

Well, the kids are ready to go and watch the news. I guess i would to close for now.

Will let you know how things progress.

God Bless and thanks for all of your prayers

Don't forget to let us know that you stopped bye, by signing the guest book.

Sunday February 10, 2002 3:31 PM CST

Hi

Well this has been an exciting weekend for Christina. It started with getting her hair and then her going to spend the day with a friend in Joplin, shopping and eating. Little did she know what the evening had for her. (she claims she thought she knew, but then said she did not really know)

At about 5:20 Christina arrived at the Neosho Rec. Center to a room full of friends and family. Also, the media. She was surprised and embarrassed. She received some gifts from some of her friends and was not too sure what to think, she had a look like what are these for on her face.

When interviewed but the reporters, Christina suddenly became shy. She said she did not have much to say, this is the girl who usually can talk non stop to you. The television station, KODE NEWS 12 was there ready for her too. It was neat for her to see some of the people she had not seen in a while. When the reporter from the Joplin Globe came he stood right by her and did not even know it was her. The look on his face was worth a million. The last time he had saw her was when she was in ICU, on the vent only days after her transplant. He is planning on finishing his interview on Monday. Also KODE with finish their story Monday at the school.

She made the front page of the Neosho Daily News this morning. She thought it was neat that it said she was 9, she told me, "well I am almost 9 in April" I guess she did not know that I knew when her birthday was.

It was a long day for every one, and we all went to bed early and I think all would have slept in for a while, had I not woken them up for church.

When we arrived at church this morning there was a sign the read, "Happy Anniversary Christina, we love you!" and a white monkey holding roses and candy. She loved it. Of course she questioned if it was really her's. I think she is still not sure about why she was receiving gifts. Her brothers too received a couple of gifts from some friends.

Josiah, learned an important lesson yesterday as well, he had $5, and used it all in the game room. He came up to me right before they went home with grandpa and told me he was ashamed of himself, because he wasted all of his money on the "stupid" games. I asked him if he had fun, and he did, but he also knew that if he was ever going to get the Lego set he is wanting he is going to have to save his money. I told him it was an important lesson, that I hope he did not forget too soon. I almost gave him $5 more dollars but though second of it. He needed to learn the lesson and I think he did. The joys of growing up.

Well I guess that is about all for now. I am still waiting to hear about the lab results. I am hoping to hear something tomorrow.

Thanks for stopping by.

Lori

Friday February 8, 2002 0:18 AM CST

Hello all, I was informed that I needed to update the page, and I guess that is very true.

Today Christina went to Dr. Wheeler and they are now checking to make sure she is not diabetic. I hope to know within the next couple of days, tomorrow would be nice. I have told her what they are thinking, and if it is that case, that is cool, we will deal with it. She has dealt with so much more and she seems okay with it. She was talking with a friend of ours tonight who is diabetic and was getting all kinds of neat ideas. The one reason they are checking her for it is the discoloration of her skin on her side and stomach areas that get dark and fade. Also, two of the meds that she is on can cause it and it runs on both her daddy's side and my side of the family. I pray it comes back normal, but like I said if not, then we will learn to adjust with it and go on. ( I think we are learning, finally, to take one day at a time and not borrow from tomorrow, it is not always an easy task to do, but we are learning.)

But on the brighter side. She is feeling so much better and her pulmonary functions are improving. She is still having some problems with her nasal passages I think, because she feels like she needs to blow and nothing really comes out. (?)

Saturday we are having her one year party, finally. It is turning out to be quite an ordeal. So far we are looking at close to 80 people. KODE channel 12 news is going to be there as well as the Joplin Globe, Neosho Daily and possibly the Neosho radio station. On Monday KODE is going to follow Christina around from home to school and then while she is getting settles and all that. Then they are doing a story on her. I still don't know all of the details on that.

This is going to be so much fun, mainly because she knows nothing about it. And believe me it is hard keeping it from her. I am going to try and get her in to get her hair done and a friend is going to take her for the afternoon and then bring her to the Recreation Center at 5. It has been a lot of work and a lot more to come, but I am so excited. The boys think it is cool that they know something that she doesn't know.

We picked out floor plans for out house this past week, we are all getting excited about it. I was not sure if I told you that this is going to be a Habitat for Humanity House. However, we were able to pick out our plans and then make changes for it. The average house will cost about 35 to 40 thousand to build but will sell for twice that. We are going to make it "handicap accessible" too. Our Pastor announce to the people in our church the other night that he is counting on several of the men to help with it. After all they built our church and two houses for the pastor and assistant pastor. I will let you know when the ground is broke, we are so excited.

Thursday January 31, 2002 7:39 PM CST

She is OUT

Christina was released from the hospital this afternoon. She is doing much better. She still has to be told to eat and drink. But I think she will get back into the swing of things.

All we know for sure is that she was severely dehydrated and that she had (has) a sinus infection and possibly the flu. She had losted about 4 pounds, and is almost back to her normal wt. I am looking forward to see her pulmonary functions improve too.

A friend called and asked if we had a thing for the 29th and the hospitals. Christina made sure that all of the nurse's and respiratory people knew it was her one year post transplant birthday. I am still planning on having a party for her. Right now the one for this weekend has been cancelled. We are hoping to do it next Saturday. She was wanting to go and do stuff as soon as we came home, that did not happen. She even wanted to go to school tomorrow, and I told her she would be going right at the dinning room table. She was not happy with that, but I am not taking any chances with her, she was also told that she is going to be wearing her cute little blue face masks. Of this she was not happy about. I asked her if she wanted to go back into the hospital, all I got was a low NO.

It was so good to be close to home. She had to adjust to the fact she was not at SLCH, she wanted one of the nurses to come into the room and sit with her once while I was down stairs getting something to eat and telling a friend who had come to visit her good bye. I had to explain that there were a lot less nurses on the floor than at Children's and that there was no Child Life program there. Although I think it would be a good idea if they start one. It would be a great help to the nurse's when the parents can't be there. I might have to mention that to someone.

One thing I really appreciated though was our cordinator from St Louis Children's Hopsital, Debbie, called each day we were there to see what was going on and how she was doing. It lets us know that they are concerned about our kids, not only while they are there and sick, but when they are at home and sick too.

When we left we told them all we loved them so much we would be back in two weeks on the 15th. That is when she gets her IVIg.

Well that is about it for now. I am going to get the kids ready for bed, I can't wait to get into my own bed! I think I have a kink in every part of my back.

Until later

Thanks for stopping by

OH, we were trying to get approved to get a house built and we found out on Tuesday that we were. We are so excited, we are going to be looking at plans within the next couple of weeks, and then hoping for ground breaking sometime in Feb.

Wednesday January 30, 2002 10:24 AM CST

Hi

Just a quick update. Christina spent here one year anniversary in the hopsital, I guess it had something to do witht he 29th. :-)

Really, she had been feeling yucky for a little while and had developed a sinus infection that seems to have settled in her chest. She has been in since Monday afternoon. We are hoping to get out soon. She needs to eat and drink more and not run fever.

I will let you know when we are out. Thankfully we are not in St Louis but Joplin.

God Bless

Saturday January 26, 2002 6:35 PM CST

Evening

I thought that I would give a little update on Christina.

Right now she is feeling pretty yucky. She has a sinus infection, and thus far the meds they are giving her do not seem to be working. She is now coughing a lot and not really eating, and she is throwing up, and waking me up to tell me that she can't sleep. She did that about 5 times last night. I hope that tonight she sleeps. I had her the to doctor today, but it was not her doctor, it was the one on call. He order some more medicine. (Hey what is one more with all that she is taking for this, this makes it at about 5 now) I hope it works.

Plans for a party have changed a little bit. We are going to do a "Private" party for friends and family and those from St Louis. Then toward the end of the month we are going to try and get something going for the public. I have a friend who was doing fundraisers with an organization, and she was not allowed to help us with ours because of conflict of interest, but now her position has changed and she will be helping us with ideas and have more time to get involved. She is a great person.

There really is nothing else going on here in Neosho, it has been nice.

You all have a great evening and thanks for stopping by. I see that several people are stopping by each day. Don't forget to sign the guest book and let us know you been by. She likes to have me read them to her, and some of them she tries to read herself. I am hoping to get some more pictures taken and do an update on her photo album. I want to take a picture of her in the same pose and dress and hairdo of a picture that was taken a year ago, a little before relocating to St Louis. As soon as I do I will get it on the page.

God Bless you all and thanks for coming by

Lori

I also want to say thank you to those who have helped by donating in our COTA for Christina acct. You have been a great blessing.

Tuesday January 22, 2002 2:21 PM CST

Hi

Well Christina got some good news that one of her friends from St Louis received her new lungs on early Sunday morning. She was so excited for her.

This time last year we had just relocated in St Louis. A friend and I were talking about it the other day and how fast a year has went and how much has changed. It is so hard to believe that in only one week Christina will be celebrating her one year post transplant anniversary. I have ordered little cupcakes with a heart and lungs on them for school. I am still going to try to have something on Saturday the 2nd of Feb. I don't think it will be as big as I had hoped, but there will be time to plan for that. I am going to have an open reception type thing for Christina and if the community wants to stop by and visit with her that would be great. But for the most part it will be with some good friends and hopefully some from St Louis. We are trying to work it out so that some will be able to come.

Christina is not feeling the best right now, I think she has another sinus infection. I am trying to wait and see if it will pass, at least until Friday, she has a Doctors appointment then for lab. I am learning how to read her and the things that are going on. She on the one hand feels miserable and on the other wants to keep playing and acts like she is fine, she is at school right now.

She also was able to go the Pizza Hut with the Principal for completing the most paces, her and two other children. Not too bad for some one who has missed over 21 days of school so far this year. (That is better than last year!)

Well got to go and get some things done around this house. If anyone wants to send Christina a "Birthday" card they may send it to
1019 Bond St
Neosho MO
64850

Friday January 18, 2002 10:05 PM CST

Hello everyone!

Just thought I would stop by and update the page, I was told that I needed too.

Today Christina had her IVIg and all went well, I think part of it was we went a lot slower at the increases and she was given Benatryl twice. So she slept the first part of the day and fought it the second. She does not like to sleep from meds.

Things are back to "normal" since we have been home. She is still in school and having no problems She is walking the tread mill at 2.5 miles an hour almost everyday, they two days we have a hard time doing it is Sundays and Weds. We may have to change one of her meds to help her "go to the bathroom" easier, we will see.

Next Friday is a big lab day, she is needing blood work done for pulmonology and nephrology.

Out side of that things are fine, her pulmonary numbers are still a little down since her bronchoscopy, but I am watching and hoping that they will start to go back up where they were before it.

Hope to see that you have stopped by and signed the guest book. I am going to try and get a picture taken of Christina in the same outfit and same hair do that she had done just weeks before tx and you will be able to see the amazing change that has happened within her.

Once again it is hard to believe that this time last year we were getting ready to relocate to St Louis. On the 29th we have having cupcakes at school with little hearts and lungs on them, it is like her 2nd birthday. Someone asked me if I was going to buy her a present, I still don't know. Her brothers kind of feel she does not need to get any. If I do I will get them something little too (LEGOs).

Well, it is kind of late and it was a long day, so I believe I will close for now. I look forward always to see who signed out book. We check it daily.

God Bless

LORI

Oh, we have snow and all of the kids have asked at least twice if they can play in it tomorrow! :-)

Thursday, January 10, 2002 at 01:15 PM (CST)

Greetings from St.Louis!

Well we have been here one week for tests and bronchoscopy and eyelash removal. So far things are going along well.

Once again, we had the joy of hearing that there was no rejection found within the lungs. Praise God! Her blood levels all came back looking real good. Her colesteral is lower than most of the other children who have been transplanted and are on steriods.

Christina's PFTs were down some and she improved with inhalors so thus she will start taking inhalors twice a day. She has another change in her meds with her blood pressure medicine, they are changing it to one the will not only help keep it lower but that will also help the heart's function, and with reduce the swelling in her gums that is brought on by the Cyclosporine and the Norvasc.

Since the Bronch she has been coughing up 'yucky" stuff, but we all feel it is just the stuff that was stirred up from the procedure.

Her heart function is looking good, the holes inthe septum are still closed and she will not have to see the cardiologist for about 2 years, unless she has a poor echo, or a poor profusion scan. Her heart is still some what increased in size, but it should start reducing back to normal soon. She was kind of sad that she was not going to have to have a heart cath. But she will live through it. The fact that her heart rate does not increase with excercise may be due to the small bundle branch blockage, and the fact she needs to be in a more fit shape (something we are working on).

We are planning on going home tomorrow morning, I can't wait to share the new of her visit with all the people there.

I found out today that in the 10 years Children's has been doing lung transplants, Christina is the first to ever have the need to have eyelashes removed. Also, most children experience some rejection within the first year. She has had NONE. I truely believe thatit is due to all of the prayers that have been offered up on her behave.

It has been a long year, but a year of much learning and leaning on God. A year that we will always look back on with grateful hearts, not only to the wonderful people here at St Louis Children's Hospital, but to the wonderful family that gave us so much. We many never meet them or ever know who they are, but we want to say thank you for the beautiful gift of life for Christina.

Thanks for stopping by.

Lori

Tuesday, January 01, 2002 at 07:00 PM (CST)

HAPPY NEW YEAR

I hope this finds all doing Great and feeling Great the first day of the new year.

Just thought I would let you know that I have updated the photo album with the pictures from the Christmas party in St. Louis. I hope you can figure out who all of the people are.

The kids thought it was cool that they were able to stay up "all night" last night to see the new year come in. Also to be able to see Jupiter, especially Josiah, he is into the planets and science things. Who knows I may have a scientist on my hands in the future.

Christina and I leave for St Louis on Sunday afternoon. She has to have her port accessed on Friday so that on Monday I can draw all of her blood for the lab work up that they do. I will try to let you know how things go between now and then. Right now things seem to be moving along smoothly, the only complaint she really has is her eyelashes, you know the ones left.

Talk with you soon, pray that this visit goes good.

Lori

Saturday, December 29, 2001 at 04:30 PM (CST)

Hello, and Happy New Years

I hope this finds all of you having a been able to relax over the last few days. Christmas is done in our home, we finally took the tree down and got things back to looking "normal". Only boys wanted to keep their little 3' tree up until after New Years, it will not be hard to take that one down. It is more like putting it in plastic and carring it down into the basement.

Christina has an appointment at a beauty salon to see what they might be able to do with the extra hair growth that comes as a result of the Cyclosporine and some of the other meds she takes. We have been shaving her arms, legs and back and using Nair for the facial hair. It is getting old and she wants to try other things. We will see. Of course for the most part we will have to check with St. Louis to make sure they are okay with whatever methods the salon maybe able to come up with.

Her eyelashes are starting to come back although slowly. I still can not believe she did that. I think she can't believe she did it either. She has even asked me why she did it, I guess I am suppose to know all the ways of children and what they think. I would be rich if I new that.

Christina wants to wish you all a Happy New Year. She hopes that you get the year you all wish for. She wishes for herself, a year in which nothing would go wrong, like having to have to go to the hospital, she hopes that everything will be better than it normally is.

I hope to get pictures from the holiday on the site by Tuesday evening. So keep checking.

God Bless

Lori

Saturday, December 22, 2001 at 10:03 PM (CST)

Well Hello again. I hope all is well with everyone.

The kids are getting more and more excited about Christmas. Stephan, the youngest is counting down the days, and wants to know when they will be able to open presents on that day.

Things with Christina are the same. She is doing well, her PFT numbers are holding in the upper 60's to mid 70's. Her oxygen levels are doing good too, between 95-98%. We are scheduled to go to St. Louis the 6th of January for a week.

This week was a very busy one, on Mon. we were in SL for the tx party, on Tues was school; Weds was Christina's IVIg; Thurs was the last day of school and Christmas party, wedding rehersal, church decorating; Friday was finishing the decorating, getting dressed and ready all three kids for the wedding that they all had a party in, getting pictures of Bride, fixing the mother's hair, and finally the wedding, (it was very pretty) and then the reception and finally home and bed. Today was not that bad, it was house cleaning and shopping.

I am hoping to get things started on planning for a HUGE party for the end of January for Christina's one year anniversary. I would like to be able to have it work out as a party/fund raiser. I have to get some others involved with it, maybe get a singing group, that is well known around here involved. I guess we will just see how it will all come about. I will keep you all posted about it and then maybe you too can plan on coming.

I PRAY YOU ALL HAVE A WONDERFUL CHRISTMAS. MAY GOD'S BLESSING BE WITH YOU ALL AT THIS TIME, MY GIFT TO ALL OF YOU WOULD BE FULL OF HEALTH FOR ALL OF OUR CHILDREN, GOD'S SALVATION, AND A JOY FILLED NEW YEAR.

MERRY CHRISTMAS

Tuesday, December 18, 2001 at 10:43 PM (CST)

Merry Christmas!

Yesterday was the St. Louis Children's Hospital Lung Transplant Christmas Party at the Magic House (Children's Museum). We traveled 285 miles one way for the kids to be able to go. And came home after it 285 miles, what a night.

They really enjoyed themselves. It is funny, Christina is so use to the trip up there, but her brothers' questions were always,"Are we almost there yet, when can we stop to eat and how many more miles do we have to go before we are there?" Oh yea, and "Hast the party started yet, are we going to be late?"

We finally got there and they ate and then played and played, until Santa came. Now they know it was just a friend, (One of the fellows from the transplant group), but still he had presents, so they came running into the room we were in and sat down and waited until there names were called. Christina told me today she thought that her name would be close to the end, but she was one of the first to get her gift, a clock kit, that she is looking forward to painting and putting together.

It was good seeing all of the doctors and cordinators away from the hospital, there were several of her friends there too. One of the new friends name is Micheal, he is just 10 days out of transplant and looking great.

Well, that is about all that is going on right now. Tomorrow morning we are at St Johns for her monthly IVIg.

Hope you all have a great holiday.

God Bless

Lori

Saturday, December 08, 2001 at 10:42 PM (CST)

Greetings from Neosho. We arrived home areound 4 this afternoon.

This visit was a little different than I expected. We did a lot of talking with her doctor, her nurse and with her social worker and with one of the Child Life specialist.

Christina also did normal spirometeries and they are looking fine, although she still has some funky air trapping or resistance going on. She did a 6 minute walk test and that led to her having a stress test in the pulmonary function lab. The girls in there worked with her wonderfully. However; she did not perform that great on the test. I still don't understand all that is going on, but I hope to Monday. I do know that her right ventricle of her heart may not be functioning correctly due to elevated pressures (from the pulmonary hypertension she had, before transplant). Then we had to have an EKG.

In January during her one year evaluation they planned to do a normal echocardiogram, and now they will focus more on the right ventricle to see what is going on. She may possibly have to have a heart catherization during that time also. We will see. I will let you all know when I understand what is going on, until then I plan on trying to relax and "get a life going once again".

Oh, Debbie, (our cordinator, the one in the album) came out from her "office" and had the famous feather hat on, she was so funny. She says that everyone is jeoulse and wishes they too had a hat like hers.

We are planning on going to the SLCH Transplant Christmas party on the 17th. Christina and her brothers are so looking forward to it. The boys will be able to meet everyone who works with Christina.

Oh I forgot to let you know somthing comical Christina did, well it was not funny at the time. Last Monday, my daughter with the long beautiful eyelashes, you know the ones that she she going to get the extra removed. Well she was bored in school and she felt like cutting something. So she thought that she would just cut her eyelashes, that is right on both eyes. Without a mirror. So now she has long and short eyelashes. These were not the lashes that are to be removed, mind you. I asked her if they were bothering her or what, and she said "No, I just don't know why I did it." After looking in the mirror at her lashes, I did not need to punish her anymore. She felt bad for a very long time. I don't think she will ever do that again, much less cut anything on her body. I plan on asking the eye surgeon, if they are not grown back by the first, if he could just trim them up while he is working on them. It will be interesting to hear his reply. She is schedule to be in the OR at 7am on the 8th of January. She will have the eyes done and then have her Bronch done right after that.

It is amazing as to how small of a world we live in. While in St Louis we stayed at the Ronald McDonald House on Friday night. We went in to the kitchen for dinner and a groupd of Girl Scouts were there. One of the leaders asked Christina where she was from and told her and then asked if if it was near Joplin. Which we are. Then she asked Christina if she was the American Heart Association Heart Child for the Chrystal Heart Ball this past January, which she was. Then she told her the she had been following up on her and knew all about her. Come to find out a friend of our named Cindi Dunger. Cindi was at her house that morning of the transplant and was ready to be at the hospital if I was going to be alone. Our new friend, sorry but I did not even get her name I think it is Cia, called Cindi right a way and told her who she was having dinner with. Christina got to talk with her too. One of the ways Christina remembers Cindi is by a Chrystal heart she gave her. It hangs in our van as a special reminder of all the wonderful people God has brought into our lives throughout all of this.

Well that is about all there is going on here. I will keep you updated on our happenings.

Saturday, December 01, 2001 at 05:03 PM (CST)

Well the holiday season is here. Today we had our seasonal parade and the theme this year was "Ringing in the Season". The school's float was with a large gold bell, and we were able to get 4 uniforms from all branches of the militery and some of the older boys wore them. We also had the American and the Christian flags next to the bell. The kids all wore red, white and blue. We even had Besty Ross there sewing the flags and the kids all sang Christmas carols. We wanted to remind the community to keep praying for those who are away serving our country during this time of year. We are so thankful for all that have served to help keep our freedom, so that we can Ring in the Season, with joy and liberty. The school finished in third place. Not to bad concidering there were over 100 floats this year.

It is hard to believe that almost a year has past since Christina's transplant. This time last year we were making plans on the possiblity of relocating, just to be near the center, we knew she was close to the top, but did not know how close. And then the first of last year we were there for a heart cath and check up and came home and then not a few days after that we got the call that she was next in line for lungs and that it was time to relocate. This year has just went way to fast. I don't know if I will ever catch up with it.

Well there really is not much more going on here right now. We are getting ready to go to Wal-Mart and get some Christmas stuff. We have already gotten Grandpa's, now for the rest of the list. I will have to do their shopping late at night when they are asleep and Grandpa can be here with them.

Thanks for stoppping by, hope to see that you have signed the book.

God Bless, and Happy Holidays

Lori

Wednesday, November 28, 2001 at 10:37 PM (CST)

Hello again. I hope this finds everyone doing great.

We are off to the doctors in the morning for a cyclosporine level. And then next week to St Louis as you well know. Our schedule for January has changed and thus that has changed out schedule for next week a little bit. They have moved her bone density scan to next Friday instead of while we are there in Jan. One of the reasons for the change is that they are going to do her eyelashes and her bronchoscopy at the same time in the OR on the 8th.

When Jennifer called and told me to scratch the schedule I had for January I knew some changes were made, but several changes we made, but that is all cool with us. The main thing is that they are only going to have to put Christina out once and be able to get two things taken care.

We finally got some snow yesterday and today. Not enough to count really, a lot of ice on the cars in the mornings, but that it about it. It is COLD though. Christina was a little upset when I told her she could not play out in the cold and in the snow. I did not even let her brothers play out today. She is getting kindof a stuffy noise and she complains of it often, glad we have to go to the doc tomorrow, maybe they will see something. She was feeling a bit slow today. I think it is the change in the weather, but we will see.

Well, there really is not much more going on here right now so I guess I ought to go and get to bed, I really need to get some beauty sleep.

God bless and we will talk with you all later. Keep warm

Lori

Monday, November 26, 2001 at 09:25 PM (CST)

Evening, Well it is Monday again. And there really is not much going on here, just thought I would stop in and say hi.

Christina is doing about the same with everything. Not much has changed.

The kids are all waiting and counting down the days until Christmas, they have developed quite the list of things that they "really, really" want, the boys list contains about a dozen different lego sets, you know the really big ones. Christina, well she just wants a crib, stroller and Miracle Baby and all of the other things that can go along with it. Last Friday the tree went up and then we had one to go up in the kids room. Thus grandpa and I ended up with all kinds of "presents" wrapped in wash clothes and towels, some of the things we received were quite interesting and when the kids were not aware of it, we placed them back where they belonged. They are so ready for it. And to be honest, I love Christmas morning too. Only this year we do not have to stop everything and change out Christina's IV medicine. She only has to take her meds and that will not take her long at all.

We are still going to be heading back to St Louis on the 6th of next month for some testing, and still have not set a date for the romoval of the extra eyelashes.

Well, I guess I ought go. Just wanted to leave a quick update for you all

God bless


Lori

Wednesday, November 21, 2001 at 07:37 PM (CST)

Greetings to all who come by. We hope this finds you all enjoying the beginning of the holiday season.

As I look back over this last year, I have much to be thankful for. We have had a lot of ups and downs, and sometimes it gets hard to handle. But, I am so thankful that I have two healthy boys who are full of life. And I have a HEALTHY girl who is free of carring an IV pump around and whose only complaint is that she does not like to take the magnesium pills.

I want to say how thankful I am to all of the wonderful people at ST. LOUIS CHILDREN'S HOSPITAL, to Debbie Springhart our cordinator, to Dr. Maite dela Morena, Christina's pulmonologist, to Dr. Charles Huddelston, her thoraxic surgereon, Dr. David Balzer her cardiologist, Dr. Fredric Wheeler our peditrian, to Jennifer Ford, who works so hard in getting us scheduled for all the trips we make, to Carla Driver, Christina Pulmonary Hypertension Cordinator, Carlo Hyde, her physical therapist, to all the girls in the Pulmonary Function Lab (Deb White, Pam, Sherri and Gracia). To all the Nurses on 7 west at SLCH. The list can go on forever I think. There are so many people that have touched our lives in this last year. Without them I don't know if we would even have a need for this page.

Christina's orginal prognosis was 5 years, and she received the gift of life almost 5 years to the date of the prognosis. I can't say that if she had not been transplant when she did that she would be here today, and she understands that too. In fact today in school she testified to the fact she was thankful for the life that God gave her. Not only once but twice. She knows that it was and still is all in the mighty hands of the one who gave her her first breath.

We all need to take time and hug our family and be so thankful for all we have. It may not be much, but we have a heart than beats and lungs that fill up with oxygen with each breath.

I don't know what the future holds for Christina and for us as a family. But, I do know who holds the future, and IF I can lean on Him then I know there is nothing that will come out way that with His help we will not be able to handle. God has brought us through a lot of stormy wheather and He has never failed us.

Thank you God for you Everlasting Faithfulness to me.

Happy Thanksgiving.

Lori

Just has a quick update, we are headed back to St Louis the 6th of next months for a day of testing, which include pulmonary functions, 6 minute walk test, and possible stress test in the pulmonary function lab. I as always covet your prayers.
The date for her eyelash removal is still not set, we are looking at the 8th of Jan. or the 27th of next month, we are hoping for Jan, as we will be there for her ONE YEAR evaluation and the 27th is the date set for her older brother's birthday party, his birthday is actually on Christmas, so thus it is a little hard to have a party with all his friends on that day.

I will try to keep you all informed

God Bless

Thursday, November 15, 2001 at 10:42 PM (CST)

Hi everyone. We are home! I thought I would update some photos and then update you all on what we found out in St Louis.

First the eye doctor. We are getting new glasses, she picked them out today and we should have them by Monday. They are square, but help her face look not so fat, as she says. Her eyes have changed enough to need a new script. It has only been 5 months since she started wearing them. This is due to the steriods she takes. And to address the eyelashes, they are going to set up a time for her to go in and have them removed permently, I am not sure how really, kind of like lazer, but not lazer. She will be asleep for the procedure, for that she is glad, and that we are not to pluck them until the removal. I look for that to be within the next month.

Her cyclosporine level is good, right where it needs to be. Hopefully it will stay there.

As for the ortho, I was not happy with the one we saw, we are going to get a second option, hopefully in January. We have to answer why one shoulder is higher than the next. I was told not to worry about it.

In January we will be going in for her one year evaluation. It is hard to believe that it is almost one year since she was transplant. And praise GOD no rejection, not even in the mildest form. We have had enough roller coaster rides this year, I am looking forward to the next year being more "normal" what ever that is.

Well it is late and I have to get up too early for Christina to be at St. John's Hospital in the morning for her IVIG.

Hope you enjoy the pictures, they were a lot of fun

Thanks for coming by

Lori

Friday, November 09, 2001 at 09:45 PM (CST)

Hello everyone.

Just wanted to stop by and let you all know that I heard from St Louis this afternoon. And all of the glory belongs to God, Christina is still CMV neg. I was so glad to hear that.

We are going to go on a plane ride tomorrow morning with one of the people here in town. He promised to take Christina in his plane when we were still in St Louis. She is taking her older brother with her, of course I am going to. Grandpa and Stephan will fly later.

We are also leaving on Sunday afternoon to head back to St Louis to see the Orthopedic Doctor and the Opthemologist.

Thanks for stopping by, Oh yea, we have a new email address mckidsandme@earthlink.net. Hope to hear from you all soon


Lori

Wednesday, November 07, 2001 at 10:55 PM (CST)

Good evening

I thought I would give a quick update on this weeks happenings.

Monday was the Honor roll field trip at Christina's school, they all went to the Precious Moments Chapel and Fountain of Angles. However, before even leaving the school Christina started throwing up again. I called St Louis and was told to get her in to see the doctor right away. So thus, I had to tell her instead of going to Precious Moments we would be going to Doctor Wheeler's She was okay with it, not too happy though. We did tell her that if we got out of there in time we would meet everyone at the chapel and that she could keep the money I gave her for her lunch. She was happy about that.

Well, we got there about 9:30 and we finally left there about 2:00. She had lab work done and cultures taken and scheduled for a Cat Scan of her sinuses. We made it to the chapel to see the last show at the Fountain of Angels. She was so glad that we did and she got to see her friends too.

At 6:00 that evening we were at the hospital having the cat scan of her sinuses. We were trying to rule out everything.

On Tuesday, she was able to go with part of the student body to have breakfast at Shoney's. These were the kids who had said their first quarter scripture, Phil. chapter one. (They go to a Christian school).

Dr. Wheeler called with the results of her CT and she has sinusitis and started her on some strong antibodics. However; we are still not sure if this is the total cause of her cough and lower PFTS, and throwing up, etc.

Today, she coughed a lot, especially this morning, I thought for sure she was going to get sick. SL called and had gotten the orders in the lab mixed up and they ran a cyclosporine level and it came back at 1400, way to high, however she had taken her meds before the blood was taken, so thus the reading. They were not sure if there was enough blood to do a CMV and some other tests. I waited for them to call back and shortly after they did and yes, they had enough blood. I hope to know something by the end of this week. I am praying the they come back neg. CMV is not something that we want these kids to have. They can treat it, but still it is not too good.

So, that is the beginning of out week. I hope the rest of this week is slow. We are going to go to SL this Sunday, she is to see the orthopedic doctor and the opthomologist. So, next week promises to be as full as this one.

Oh, her real cyclosporine level came back good, we are not doing another level for 2 weeks, Christina's words to that was "OH GOOD"

Well, I guess that wraps it up, I hope to let you know how things are going in SL. Take care and hope to see you in the guess book







Talk to your family and friends about giving the greatest gift of all the gift of life, signing the donor cards are not always enough.

Saturday, November 03, 2001 at 10:35 PM (CST)

Hi everyone, I just thought that I would stop by and give a little update on this past week.

First we did more lab and Christina cylcosporine level was once again too low so we upped her medicine and drew more lab on Friday. Hope to hear Monday.

Second, Christina has had a cough for about a week and it seemed to be getting some what worse and on Weds. she complained that her chest hurt when she coughed, like someone was pushing on her. We went to the doctor and he looked at her, and did some cultures, one was for the flu, and it was neg. we are waiting on the others. She was also vomitting on Thursday morning.

On Friday she had more lab work done for the cyclosporine and she went to the eye doctor to have more lashed plucked. (OUCH)

This weekend was not that eventful. Christina played and acted ok, but for the most part was quiet, she complained several times to day of feeling nauseated, but did not throw up. When bed came she was ready for it and I think she was asleep before I left the room.

I would appreciate it if you all would pray for her. She just does not feel "normal"

Thanks, hope to hear from you all soon, will let you know what I find out about what is going on with her.

Love,

Lori

Friday, October 26, 2001 at 09:42 PM (CDT)

Hello all, well things are going about the same. We went to the eye doctor and Chtristina really liked her. We found out that she has too many eye lashes, yep, you read right, to many eye lashes, they are beautiful but too thick. And they are growing in the inside of her eye. So the eye doctor pluck out a lot of them and we will still have to have more done, I fear this will be an on going thing as long as she is on cyclosporine anyway. She did okay with it, though it was not comfortable, she rather that than feeling the pain of the lashing laying against her eye.

Tomorrow, finally, we are getting our pictures done. I hope to get some of them scanned and let you see then, I will try and scan the proof and get them on the page.

Well, that is about all that is going on here, we just got in from the school's bonfire. Christina wore her face mask just in case some of the smoke got to where she was and to help warm the air she was breathing, she had fun and that is what counted. I think her brothers enjoyed running and playing tag in the dark a lot more than she did.

I guess that is all there is, there isn't any more, hope to see that you have stopped by and said hi. We love hearing from you all. Watch for the new pictures coming soon.

Lori

Monday, October 22, 2001 at 10:26 PM (CDT)

Good evening.

Well, tomorrow we are headed back to Dr. Wheeler's office to have Christina's eyes checked, she has been having some pain in the inner eye and Debbie, her transplant nurse in St Louis feels we need to have it looked at before we are scheduled to go back to Children's. So we shall see what is going on. Hopefully it in really nothing serious, but with some of these meds one can never be too safe, some of them are hard on the eyes, after all Christina has gotten her glasses only after transplant, she got them this past May.

Also, her cyclosporine level is too low again, I was hoping that it was leveling out. We have increased her evening dose by 25mgs and will redraw blood on Thursday, it is a good thing that they only need a few cc's of blood, other wise I fear that she would need to be given blood for as many times as we have had to draw it. She is tough though and really does not mind it, I guess after a while, you just do what you know you have to do.

We went Saturday to get our family pictures takes; however, the wait was somethink like 4-5 hours. So thus I made an appointment for next Saturday morning.

She is still so excited about making Honor Roll, she was talking to some of the little girls in school today, wanting to know if they all made it too, then she asked me and I had to tell her that they will have to wait until the parent/teacher meeting this Friday. She really wants her friends to be able to go on the honor roll field trip. They are planning on going to the Precious Moment's Chapel Angel Fountain.

Well that is all for now. I hope to get more pictures on her site soon. You all have a great day. We hope to hear from you all soon.

God Bless

Saturday, October 20, 2001 at 10:10 AM (CDT)

Hello and happy weekend!

Christine had her IVIG iv therapy on Weds. We were at the hospital for almost 12 hours, but I am happy to report she had no reaction to the medicine this time. For the first part of the infusion she slept, thanks to the pre-medication.

This afternoon we are headed to Sears for pictures, it has been a long time since we have had family pictures so I thought today we would do some fun things, maybe even putt-putt, although the kids don't know that yet. So be on the look out for new family pictures.

We will be heading back to St. Louis in a few weeks to see the orthopedic doctors to have her spine looked at and make sure that she does not have scoliosis. The one thing that I believe that has helped Christina through all of this Doctoring thing is that I have always been upfront with her. She has questioned why we were going to see this new doctor and so I told her that we need to see why she stands "funny" and why people are always telling her to stand "straight". She asked how they can fix it and so I told her a couple of ways, and she, though not excited about it is cool with whatever they may have to do. Who knows it maybe just some excercises that might help.

She is a tough little girl, I think that all of the kids who have some kind of illness are tough. They have to be, infact I think they are stronger than most parents. It is not easy to see your child go through the things that they have to. I know when she was in the PICU l wished time and time again that I could take all of the tubes away and make her "all better" I wanted to just hold her and make everything better. But I know that the best I could do for her was to smile and let her know that no matter what Momma was there and I was not going to leave her. She is a miracle to me from God and I will alway look at her in the view. She knows that God has touched her life and that it is only by His grace that she is still her with us and to see her now with all of her energy makes everything that we have gone through so worth while and I believe that she feels the same way. She is my Blessing.

Well I have to go now, I hope write an update again real soon. Thanks for coming by and I will let you know how things are going.

God Bless and have a great weekend.

Lori

Don't forget to let us know you came by

Sunday, October 14, 2001 at 10:51 PM (CDT)

Evening everyone. I hope this finds you all doing good. Things here are going along fine. Christina is once again back in school, and with the end of the first term coming up in a week, she is hoping that she made honor roll, this will be like the first breath she took on her own with her new lungs. She is so excited. I just hope that she can make it. She has to have an overall average of 95% to make it and have completed and pass at least 15 paces, she has 21 right now, but I am thinking that her average lacks by about one or two points. She will really have to work hard this week to make it. But she is very determined to do it. The field trip for the honor roll students is to go to Springfield's Bass Pro Shop. And believe me she really wants to go.

She is to go in to the hospital on Weds. for her IVIG; however, that day may change, her doctor is St. Louis is changing some of the orders on how she is to get it, because of the reaction she had last month. She received the iv to fast and thus this time it is to a lot slower. I should know hopefully by tomorrow sometime as to when we will get it done. I hope it will still be Weds. We have already scheduled it off at school.

I am asking all of you to pray for me. I am thinking of relocating our family. I want the Lord's perfect will in this. A job as opened in a field that I am wanting, I have sent my resume and hope to hear from them soon. I might be one of the first to apply for it. The kids are ok with the move IF we do it, for the most part that is. I told them I don't ever remember my parents asking me if it was okay to move or not. They are fine with it as long as Grandpa will come and visit often and that we will be able to come home to visit too. I was able to promise them both of their request. They too want us to be in the middle of God's will. Thanks for your prayers. It is hard to move them from all they have ever known. But, as the sole provider and caregiver of them I have to make the best choice I know, and really there is not much here in Neosho for us. We have a wonderful church family and support, but as far as being able to really provide for them the way I would like too, there is not much. Where we will be going is not too far from here. When I know for sure I will let you all know where that is.

It is late and school is tomorrow.

Talk with you all later, I hope by the middle of the week to get some new pictures in the album. Don't forget to let us know that you stopped my. We love to hear from you all. If you don't want to sign the guest book you can always just e-mail us.

Tuesday, October 09, 2001 at 10:33 PM (CDT)

Good evening everyone. I pray this finds all of our friends, both old and new doing well. Everything here is going fine.

I just updated the photo album with some pictures of this last visit to St. Louis. I must admit we both had fun. I think the funnest night was the last night in town. You will have to go the album to see why.

Christina is doing fine, her numbers were down quite a little bit tonight, but I think it is getting use to the cooler weather. We will see if they start going up again. If now then I will let the wonderful people in St. Louis know about it.

She is very glad to be back in school. She is trying to get as many "paces" done as she can this week. She will have a total of 7 done tomorrow after she takes the test for each subject. She will be a busy lady. She is loving it though, she knows that the one way for her to catch up to where she should be is to work hard and to keep at it. She is determined to do it too.

Well it is late and I really need to get to bed, the morning seems to come earlier and earlier each day.

Hope to see that you have been here. I read each entry to Christina and she gets excited when she sees who all have been here

Have a GREAT DAY

Lori

Saturday, October 06, 2001 at 09:12 PM (CDT)

We are home!

We are home with a good report from the Doctors. Like I said earlier this week there is no rejections, and nothing else is growing. We saw the kidney doctor, she was real nice. And so far things look okay, but her number is a little up but not to worry about, she is going to talk with the transplant team about changing some medicine in January at Christina one year mark. I can't remember what it is.

Christina is doing fine, she has a little cough that she has gotten since her bronch, but I think it is all related to having that done. That or the change in the weather. I am interested as to how the Missouri winter will be on her, in the past they were not too nice to her, so we are all waiting and "holding" our breaths. Even the boys tonight were telling her that last year she did not get to go out in the snow almost at all and this year she has to be careful too.

This weekend was Fall Festival here in Neohso, and Stephan (the youngest) told Christina that she could not have gone down to the square if we were home because there was hay around and she can't be near it. It is amazing how one minute they all act like they hate each other and the next they really show how much they care and love each other.

Well that is about all the news right now, I will let you know how things are going. Keep checking in. I hope to get some film develop and get the album updated this week.

Don't forget to sign the book, love hearing from you all

Love,

Lori and Christina

Thursday, October 04, 2001 at 01:02 PM (CDT)

Hi everyone, here is an update on Christina's bronch. Yesterday, I got the news that she is A-0 which means she has no signs of rejection, praise God, so far she has never had any signs of rejection. She is growing some strep, but right now the colony numbers are low enough that nothing needs to be done.

Tomorrow she is seeing the kidney doctor and we will see what they have to say. And then later in the afternoon we will have a meeting with her doctor and her cordinator to see what is all going on and what the results were of some of the other test were.

Well I know this is not much but really that is all there is right now. She is looking forward to tomorrow night which she and the "girls" from the pulmonary function lab are going out to dinner and then for a horse and carriage ride. Of course momma is going too.

I will let you know how things progress in the next couple of days. We are planning on going home this Saturday.

Until then

Lori

Tuesday, October 02, 2001 at 09:10 AM (CDT)

Hello from St. Louis.

I just thought that I would update you all on what is going on while we are here. Yesterday was a very busy day, starting with lab work at 8am and finishing with nuclear meds at 4pm. Christina's pulmonary function testing went very well. She was able to blow 85%. For those who know anything about PFTs that is great. Considering about 4 months ago she was blowing about 40%. Her average though is in the mid 70% which I am not complaining about.

Today started out again at 8am with lab work, and again neclear meds. Later today Christina has her physical therapy evaluation at 11am and her Bronchoscopy at 1pm. The Bronch will check for rejection and infection. She is kind of mad at me because she can't eat or drink until after the procedure and I had to have some coffee and she could not have anything. I have always made it a practice not to eat when she could not, but I have to have something to drink, usually this does not bother her, but today it did. I think she is a little nervous about having the bronch today. It has been a while since she had a "normal" bronch. The last several ones that she has had, had been done in the OR. This one is being done in the Out Patient Procedure Center. She does fine with them usually but it has been awhile for it to be done like this. If you read this before one this afternoon (10/2/01) please pray that all goes well, if it is after one, then pray that all comes back perfect with no rejection or infection. If there is rejection she will have to go into the hospital for treatment of steriods (IV). Right now Christina is working on her school working the school room on the eigth floor. If a child could love going to school she does when she is here.

I will try to keep you all update as to what we find out throughout the week. Friday she will see the Nephologist, of whom I was told isthe one fo the best in the best in our area. I hope to find some answers for her blood pressures.

Talk with you all soon. Don't forget to sign the guess book.


Lori

Thursday, September 27, 2001 at 11:07 PM (CDT)

Hi everyone, this is going to be quick. Just wanted to let you all know that We will be headed to St Louis tomorrow morning, after seeing Dr Wheeler for her port to be accessed. He will be showing me how to do it, thus, I will be the one accessing her, PRAY.

I will try to keep you up to date as to what the tests are showing though out the week. Pray for her and me. On Tuesday she will have a bronchoscopy, this will check for infection and rejection. I hope to know the answer to that test on Weds,. mid morning or early afternoon.

Until then, thanks for stopping by and for praying

Always yours,

Lori

Sunday, September 23, 2001 at 04:06 PM (CDT)

Hello, glad you stopped by. I thought it was time to update you all on what is going on here in Neosho.

Christina's cyclosporine levels are still too high, they are at 407 right now, so we lowered her dose again and we are off to see Dr. Wheeler tomorrow morning for some more lab work, then we will over night it to St Louis.

We are still scheduled to go to Kansas City to see the Nephologist, the schedular in St. Louis is trying to get it so we can see on there, as we will be going there this coming weekend for a week of testing. She seems like she is doing fine right now. Things have not changed.

It was hard on her this weekend as I went to Jefferson City, without her. This was the first time for us to be apart in almost 2 years. I was told later that she started to cry some in school after I left. But, she did okay after a while.

Sometime in the next month Christina and a little friend of hers will be taking an airplane ride from a gentlemen who sent Christina an invitation to go for a plane right when she got home. He is a well know man in our area, both of the girls are excited. I am not worried about anything happening while they are in the air. I will be there with them. And it is a private plan. They are going to fly somewhere for lunch. The destination is still not known. They will have to think about where they are wanting to go.

I know this really isn't much, but that is what is going on with us right now. I will let you all know what is going on with the Nephologist and the cyclosporine levels hopefully on Tuesday.

I have add some new pictures to the photo albums. Hope you enjoy them.

Please let us know that you stopped by.

Saturday, September 15, 2001 at 04:45 PM (CDT)

A lot has happened within our nation since I last wrote. It is with sad hearts that many American's watch the news, read the papers or listen to our radios. Even the smallest of children take time to pray for our country, our leaders and for the many victums of this "horrific act of violence." My three children are playing, even as I write "America the Beautiful". They have asked the question, as many have, "Why?" It is a question that even I can not answer. How someone could be so filled with hate, to raise their children to be so filled with the same hatred that it shows in their eyes (a picture I can not get our of my mind). All I can tell them is to pray for our country and for our leaders and for God's protection upon us all. It is my prayer that this will unify our country which has proven to be divided. May God show mercy to us all.

Things with Christina have not changed much in the last week. She has a mild infection which she is on antibodics and all of the liver test came back normal, Praise God. She is scheduled to see a Nephologist (kidney doctor, for her blood pressures, etc) in Kansas City on the 27th. We are trying to get it to be done in St Louis, however, if we can't get her in within the week we are scheduled to be there then we will go to Kansas City. We will be in St Louis the first week of October for her 8/9 month post transplant evaluation. It is hard to believe that it has been that long already. I am so thankful to have that behind us. I have much to be thankful for. She is a blessing to us all, and I praise God for each breath she takes that she can take on her own without any iv to help her body open us and receive the oxygen she was so deprived of for so long. And to see her pink and not blue like she use to be.

We were able to go to SL this past week to visit with her friend Ashley St Romain, from Louisianna. This was her 6th month evaluation and things are looking great. She has no rejection. Be watching for an updated picture of the two girls. What a change in their appearence.

I am scheduled to go to Jefferson City, our Capital, to be part of a group of parents who have been asked to be apart of a Parental Advisory Counsil for the Dept. of Health Bureau of Children with Special Health Care Needs. This will be one of the first meetings in Jeff City. Pray that God will help us and keep us safe.

Christina is still having problems with her cyclosporine levels, now they are too high, we drew lab on Friday and hope to know something the first of next week. On Monday she is going to go back into the hospital in Joplin to receive her IV therapy of IVIG. I am planning some "school work" with me to keep me from getting to bored. It promises to be a very long day again. She enjoys the attention that she gets from the nurses and is looking forward to seeing some of the same nurses that she had last month.

Well I must go now, I have 3 hungry children who are ready for TACO's I will try to get the pictures in the album within the next week.

Thanks so mauch for stopping by and visiting, don't forget to let us know that you were here.

God Bless each of you and GOD BLESS OUR COUNTRY

Friday, September 07, 2001 at 08:12 PM (CDT)

Hello everyone:

I hope this finds you all doing great. Today was a long day for Christina and I. It started out at 8 this morning at Dr. Wheeler's office for a cyclosporine level. After talking about the week she had and him looking at her with taking blood pressure, temp and doing a UA, he made a call to St Louis, the UA showed that her belium reubum (sp?) was high, this resulted in the need to access her port and draw several more cc's of blood to check for her liver functions among other things.

So far the test results all look good. We will have to wait to hear on some of the other tests. Also, Dr. Wheeler talked with a Nephologist in Kasas City, MO about seeing Christina about her blood pressures and the fact that she is always red. And the absorption of he cyclo.

Christina was also able to see her first Cardiologist again after almost 2 years. Dr. Mark Gelatt, he is from Children's Mercy Hospital in Kansas City. She was real glad to get to she him. She diffenently looked different from the last time he saw her.

We are going to to go St Louis on Monday to be with Ashley St. Romain. Next week is her 6th month post transplant evaluation. Also Christina will be able to see her cordinator and her doctor and several other friends that she has made while there. She is real excited to be going.

When we get back,the following week she will have to go into St John's Hospital here in Joplin for her monthly dose of IVIG. On the 27th of this month we have to go to Kasas City to see the Kidney doc and for a bone density scan, now what a bone desity and the kidneys have in common I really don't know so thus I can not tell you. As soon as we get back from there we will pack and head back to St Louis for Christina's 9th (8th) month evaluation.

Well now that you know how exciting my life is you really wish that you could trade places with me don't you?

I will keep you all posted

Monday, September 03, 2001 at 11:52 AM (CDT)

Happy Labor Day

Things here are busy, I have the kids cleaning their rooms. If you think that is an easy task, you try to have two boys work on one room and put away toys, etc, reguardless of whose they are, I am hearing a lot of "its not mine".

Well, we had Christina back to Dr Wheeler on Friday for a possible "cold" she was coughing and had a low temp (100). He looked at her and put her on antibiotics. She had to have more lab work done, which she was happy about, we almost did not get, again. She is getting harder and harder to stick.

I have not heard from St Louis about her Cyclosporine level yet.. I am sure I will tomorrow. At least I will be calling if I don't hear by mid morning. I know that it will be busy up there, expecially after a "holiday'.

I will keep you all posted as to what they are going to do with the blood pressure issue too. Right now it is staying the same, only gettting harder to hear. She was always a different child. :-)

Oh, she is excited, next Friday she is going to get to go see her first cardiologist. This is the doctor from Kansas City's Children's Mercy Hopsital. He was the one who dignosised her. He was (is) a very good doctor and sent us to SLCH at the right time. He told us back in 96 that her proginoses was 5 years, and it was almost to the date of that, that Christina had her transplant. I don't think he will recognize her. She is a totally different child then when he last saw her in December of 99.

Well, I guess I will let you go for now, I will update tomorrow night when I know something about the levels.

THANKS FOR STOPPING BY
Don't forget to sign the guest book. She wants to check it all the time and if she knows who you are she thinks it is so cool that her friends are writing to her. I enjoy looking at it too. Don't forget to check out the photos book, we changed the pictures too.

Have a great day

Tuesday, August 28, 2001 at 07:17 PM (CDT)

Hello everyone, we are so glad you took a moment to stop by.

Well, not much is going on, we went to Joplin to get some blood work done to check her clyclosporine level. I hope to know in a couple of days what it is. It is getting hard to get blood from Christina. Dr. Wheeler had to try three times before using her port. On the third try he kept the needle moving in her arm he knew there was a vain there he could feel it, mind you he usually gets her on the first poke. He finally got some blood and we all took a sigh of relief, especially Christina. This time and the last time he was not able. Last time was the second. Anyway, he really did not want to put her through accessing her port and she did not want it either. For the first time she wished she did not ask for it and wished for her Broviac back. However that only lasted for the time he was poking her.

She recovered from that and went to school and the rest of the day was uneventful, thank God.

All of the doctors at Children's have meetings on Tuesday morning and on Thursday afternoons to discuss any children who have something going on. Debbie told me yesterday that they were going to talk about Christina and her B/P levels and the Cylco levels, I have not heard back.

I put some new pictures in her "photo book" be sure to check them out. A couple are two of her docs and one is of Christina and one of her best friends.

Thanks for stopping by, I see a lot of her have, please sign the guest book and let us know what you think and that you stopped by.

Have a great day

Saturday, August 25, 2001 at 04:18 PM (CDT)

Hello,

Sorry the page has not been updated since Weds. but really there was nothing new. We made it throught the first wee of school, Praise God. Christina did great. She is almost 2 full grades behind, but if she keeps working like she is, I think she will catch up soon. She is really enjoying it.

We had some "excitement" on Thursday after school, we teachers had a staff meeting and the kids were playing inside, in the nursery, and Christina came in to the room we were meeting (which had just ended) telling me that Stephan, her younger brother, had kicked her. Knowing her like I do, I did not get crazy with anger, I went about preparing to leave for the evening and when I was ready I called for all 3 kids, only two came, Stephan was not among them. We started searching the school and the grounds for him, yelling his name and all, still no Stephan. By this time, it was at least 20 minutes since Christina came in to tell on him. I got in the van and started down one road another teacher down another and the rest of the teachers, principle and pastor and other parents stayed behind looking. I still could not find him anywhere. After about 45 minutes I was ready for call the police, when Brother Senn, the principle went downstairs for one last search, he looked in the kitchen calling for Stephan and then walked out, only to get the feeling to go back in and really search it. He did and then he saw Stephan sitting on the floor between the freezer and the wall. He brought him up to me, I had so many emotions going through me, I wanted to hug, scream and spank him all at once, I opted for the hug. When we got home he received a lecture and a spanking. I don't think he will ever do that again. I know I could not handle it again. I thought for sure he was lost.

Well, now about Christina, her Cyclosporine level is still low, at 236, we upped it to 125mg in the morning and 100 in the evening. We have to go back to Joplin for lab on Tuesday. I wish they would let me poke her, I can draw blood, or I wish we stayed with the Broviac, but she wanted a port so we got it, and she is doing real good not screaming with the needles, as long as they are the "butterfly" ones. And believe me, she makes sure that is what they use.

As for her blood pressure, it is still the same, her lower number is staying in the 80's and sometimes hitting in the lower 90's. I have not heard what we are going to do about it yet.

I hope that you take a minute and sign her guest book. Thanks for stopping by.

Lori

Wednesday, August 22, 2001 at 11:06 PM (CDT)

Hello!

Well, we went to Joplin, to Dr. Wheeler, and had lab drawn and then we over nighted it to St. Louis. I should know something later in the afternoon or early Monday morning.

I talked with Debbie, Christina's transplant cordinator and she told me that she does not know if they are going to have Christina see a Renal doctor yet. Or we just might change her blood pressure medicines.

She had her first day of home work today, and she came home and sat right down and did it. It took her a little while to do it, there was quite a bit of reading for her to do, but she did it, even wanted to read to her grandpa. She is really enjoying school. She was worried this morning that she was not going to get to go to school today, I guess she thought that because she had to go to the Doctor's that she would not be able to go. She was so glad when we pulled up in the parking lot of the school. It think that is the only reason why she had homework. She gets in her little office and goes to work like a bee in a hive. When it is done she gets all excited about it. I wish she was this excited about doing school work when we were in St. Louis. Her school teacher there, Donna, would not have known what to do with her.

Well once again it is late and I need to get things ready for tomorrow. Thanks for stopping by.

God Bless,

Lori


If you would like to make a donation to Christina funds to help defer the expenses of her post transplant care you can do so by:

Making checks payable to:

COTA FOR CHRISTINA
Acct. # 5047512019

and mail them to:

BANK OF AMERICA
719 S. Neosho Blvd
Neosho, Mo 64850

We want to say thank you for any help that you can give.

Tuesday, August 21, 2001 at 10:27 PM (CDT)

Greetings, well it is getting hot once again. And we have made it through the first two days of school. I thought today I would drop. Things are going along okay so far, no major changes since I last wrote.

Debbie called today from SLCH, Christina cyclosporine level is too low still, lower than the last time, however this time we are not sure if the blood sample was right, it was taken 2 hours later than normal and thus her meds were put off for two hours.

Anyway, we are going to go to Joplin in the morning and get some more blood work done and hopefully this one will be good with good levels. I don't know what they are going to do if it is too low still, we went from way to high to low, to way to low. I guess we will see, I am getting it don't early and overnighting it to St Louis so hopefully we will know something by Friday.

Well it is late and I am very sleepy. I am not as young as I use to be and each day that passes reminds me of that. (don't laugh some of you are older :-) )

Don't for get to sign the Guess Book, Christina loves it.

Night

Lori





If you would like to make a donation to Christina's Transplant fund to help defer some of the expenses of post transplant care, please make you checks payable to:

COTA FOR CHRISTINA
acct. # 5047512019

and mail them to

BANK OF AMERICA
719 NEOSHO BLVD.
NEOSHO, MO 64850

Again we want to say thank you for your giving and prayers

Saturday, August 18, 2001 at 10:10 PM (CDT)

Hello, it is cool night here in Missouri and what a relief.

Today was the car wash for our transplant fund raiser. It was a big success. Thank God. I was not too sure about it early this morning, when it looked like it was going to down pour on us. And of course people really don't want their car wash if it is going to rain. Well, it turned out to be a bright sunny day, not too hot either. The cars started coming and more people came to help, so it turned out great.

Christina had a blast. She got to meet alot of people who sent her cards while in the hospital, and she got to work a cash register at the gas station we had it at. She stayed inside most of the time. Everyone else looks like lobsters, even with sunscreen. She says that in 10 years she is going to go back and work at the gas station's convenient store. What a future, of course that is before she goes to college for nursing or who know thoraic surgery.

We are going to see if Wal-Mart will be able to match the funds we raised tonight, if they do, then this one car wash would bring in almost 1,200 dollars, not bad for one days work. We even had pepsi donation 6 cases of pop ( or soda for some of you who don't know what pop is :-) ) and a local pizza business donated lunch for all the workers, I think we had at least 24 people washing cars. You should have been there. And believe it or not with most of the helpers being under 17 we did not even have a water fight. It was just a great day, I don't think I could ask for a better one.

Well it is not that late, but I know this old body just aint what it use to be and I am sore and tierd.

Don't forget to check out the new pictures.

I hope to have some results of the lab work that was done yesterday, (Friday) on Monday. I will let you know what we find out. Her B/P is still up there for the lower number.

God bless and hope to hear from you all.

Lori

If any one wants to make a donations to our transplant medical care fund, please make checks out to:

COTA FOR CHRISTINA

and send then to:

Bank of America
719 S. Neosho Blvd.
Neosho, MO 64850
Acct. # 5047512019

THANK YOU SO VERY MUCH

Tuesday, August 21, 2001 at 10:10 PM (CDT)

Hello, it is cool night here in Missouri and what a relief.

Today was the car wash for our transplant fund raiser. It was a big success. Thank God. I was not too sure about it early this morning, when it looked like it was going to down pour on us. And of course people really don't want their car wash if it is going to rain. Well, it turned out to be a bright sunny day, not too hot either. The cars started coming and more people came to help, so it turned out great.

Christina had a blast. She got to meet alot of people who sent her cards while in the hospital, and she got to work a cash register at the gas station we had it at. She stayed inside most of the time. Everyone else looks like lobsters, even with sunscreen. She says that in 10 years she is going to go back and work at the gas station's convenient store. What a future, of course that is before she goes to college for nursing or who know thoraic surgery.

We are going to see if Wal-Mart will be able to match the funds we raised tonight, if they do, then this one car wash would bring in almost 1,200 dollars, not bad for one days work. We even had pepsi donation 6 cases of pop ( or soda for some of you who don't know what pop is :-) ) and a local pizza business donated lunch for all the workers, I think we had at least 24 people washing cars. You should have been there. And believe it or not with most of the helpers being under 17 we did not even have a water fight. It was just a great day, I don't think I could ask for a better one.

Well it is not that late, but I know this old body just aint what it use to be and I am sore and tierd.

Don't forget to check out the new pictures.

I hope to have some results of the lab work that was done yesterday, (Friday) on Monday. I will let you know what we find out. Her B/P is still up there for the lower number.

God bless and hope to hear from you all.

Lori

If any one wants to make a donations to our transplant medical care fund, please make checks out to:

COTA FOR CHRISTINA

and send then to:

Bank of America
719 S. Neosho Blvd.
Neosho, MO 64850
Acct. # 5047512019

THANK YOU SO VERY MUCH

Friday, August 17, 2001 at 08:34 PM (CDT)

Good Evening everyone, glad you stopped by.

Well we have the IVIG finished, we got to the hospital at 7am and arrived home at 5pm. It was a very long day. It all went well, with little reaction. Praise God. She really enjoyed her nurses that she had today.

There is still concern with her blood pressure. We are going to monitor it closely for the next week, taking it twice a day and sending them to St. Louis via e-mail. Her doctor in SL is going to be talking with a Renal doctor to see what he thinks. We drew some more labs today to check out the kidney functions. Please keep praying for her.

I know this is not much, but there really is not much more to write. I hope to be able to update some more on Monday when we get some more lab results back.

Thanks for stopping by.

Lori

Check out some of the new pictures I am getting ready to upload.

Tuesday, August 14, 2001 at 09:23 PM (CDT)

Hello, I hope this finds all of you having a good day, or rest of day. We had a busy one, only one more day for us to get ready for school. Thursday the boys get to have their yearly doctors visit Dr. Wheeler for their back to school exam, they are excited about it, finally they get to go to the doctor.

Christina goes into the hospital on Friday morning for her IV therapy. It should not take but a little more than 4-8 hours. Then she will be released. We received her cyclosporine level today, and now it is too low, it went from 595 to 210. We have to have another level drawn on Friday morning. So hopefully by Monday or Tuesday we will know what to do again.

Well, there really is not much more going on her. Christina says to tell everyone that she likes getting mail in her guest book. (you should see her face when I read them to her)

I am going to go now, will wright later.

Monday, August 13, 2001 at 11:00 PM (CDT)

Evening,

Well we got some good news, her levels on the kidneys look ok, one of her numbers were a little high, but not too high to worry about. We are still waiting for the cyslosporine level. We hope to get that tomorrow.

Today was a very busy day. We worked at the school getting things ready. Christina and the boys stayed with their grandpa for part of the day and later in the afternoon they came to the school. They wanted to go into every room and see what we did. I think the liked the computer room the best.

Let me explain a little about their school. It is Calvary Christina Academy. It is a private school ran by our church, it is k-12 and we use the School of Tomorrow or ACE. We will start out this year with 36 students. Most of whom Christina already knows. She already requested where to sit and by who. Each student has what we call their own "office". It is like a little cubical, and they all face inward so no one is looking around, they work at their own pace, and teachers are always walking around the "Learning Centers" or class room and helping students as they need it. We have a Kindergarden and 1st grade class room, and this is like a normal class room, and then a lower Learning Center, this is the elementry and an upper Learning Center, this is the high school.

I hope this will make it easier to understand things if from time to time I talk about Christina and something at school.

Well It is getting late. There are new pictures to look at. Hope you enjoy them.

Don't forget to sign the guest book, we like to see who has been by, Christina and I check it everyday. To her it is like getting mail.

God Bless

Monday, August 13, 2001 at 12:28 AM (CDT)

Hi everyone:

It is late (of course) and I just thought that I would stop by and make a quick entry. Today was a good day, we went to church and had a big time in children's church. Christina knew almost all of the new songs I was teaching the kids and the motions and kept correcting me on some of the motions, until that is I told her this is the way we were going to do it, if she did not want to she could go upstair to "big" church, she did the "new" motions with us. She has a quick mind and remembers things (that she chooses) fast.

We are trying to get a car wash going for next Saturday, for a fund raiser, so if any of you are available give me an e-mail, I will take all the help I can get. So far several of the young people (youth) from our church have offered to help, one of the boys (who is 15) said he didn't like doing car washes, but for Christina he would do anything. Just let me know if you can make it, it will be lots of wet fun. I hope it goes well and we can raise quiet a bit. I plan on calling the radio station and maybe even the news station, (the ones that came up to SLCH). Oh yea and the newspaper too.

Well like I said it is late and I need to get to sleep, I have to be at the school tomorrow morning to get help get it ready, only one week left. Now I am not smiling when I say that. :-)

Have a great day

Oh, I will let you know of the test results I hope to know something tomorrow

Friday, August 10, 2001 at 11:10 PM (CDT)

Hello everyone: I hope this finds you all doing great.

Here is the latest on Christina. On Tuesday we had some lab work done to check her Neoral (cyclosprorine, an immunospression drug) level, today we got the results back and it is about double what it should be, her last level was one 281. We are not too sure why, we held her medicine this evening and lowered her dose. Tomorrow we are going to go and get more lab done, and we are also going to check some of her kidney levels, as this medicine (and others that she takes) is hard on the kidneys. And for some reason it seems that her body is not riding itself of it or something. (I honestly don't understand alll there is to the absorbtion of this medicine, I wished I understood more, I guess it is time to get out some of information and start my searches again.) I encourage her to drink lots of water, but maybe she needs more. Please pray that all will come back okay.

I will let you know what I find out when I do. We are still home and having the blood work done at St. Johns in Joplin.

Thanks for your prayers and will keep you informed

Good Night

Thursday, August 09, 2001 at 10:44 PM (CDT)

Hello once again, I see is has almost been a week since my last entry. Things are going along fine right now. Christina is busy playing catch up with her brothers. They are playing things like school, doctors, and today they were playing "Pulmonary Function Lab" and Christina was teaching them how to blow out and empty their lungs. Josiah was wanting to use the spirometry unit, I had to be the mean one and tell them no.

Christina, everyday is counting down the days until school starts (only 9). I am excited for you to be able to go back, but I am nervous at the same time. She will have in her desk a box of little face mask for her to put on if someone around her starts coughing or sneezing a lot. I know that I am a worry wart when it comes to things like germs, more so than before.

Well, I have to go for now and help another transplant mom work her page and get some pictures downloaded on to it,

Monday, August 06, 2001 at 11:25 PM (CDT)

Hello everyone, thanks for stopping by.

If you go to the photo section you will see some of the people that have become so special to us. These are two of Christina's doctors and a couple of the cordinators of the transplant program at St. Louis Children's Hospital. And a very special and close friend of her's.

I have been asked if our lives have changed much since transplant. I would have to say yes. There is hardely a day that does not go by that you worry about rejection, infections, or any other "tions" you can think of. Your mind is always filled with questions and of course there are those doubts that come into play. You sometimes wonder if we did the right thing, (I know that came through my mind a lot over the last month.) Even the vocabulary of the entire house hold changes, apprevations become of daily talk, like what are her FVC's or FEV1's today, what about her B/P or pulseox.

But when you see Christina playing or swimming and having fun, not turning blue, or breathing as hard as she did, YES, a thousand time YES it was worth it. To me and to her. When we thought she might be in chronic rejection, I asked her very planly if she wanted to go through all of this again and she said "yes, anything to live"

I guess if I could dedicated a page to anyone it would be to the lung transplant team at Children's. They are the greatest and they are always there for these kids and their families, no matter how many mile seperate us. I say this for all of us moms and dads of these wonderful kids, THANK YOU SO MUCH.. With out God or you I don't know how we could make it through sometimes.

Well once again it is late and I have to get some sleep, we have to be at the doctors very early tomorrow morning to get some lab drawn before Christina can take her medicines.

GOD BLESS

Saturday, August 04, 2001 at 12:31 AM (CDT)

Greetings everyone. not much is happening right now in Neosho. Yes we made it through the rest of this week home!

Christina is so happy to be here. She is planning on taking all of her little girl friends to the Mall, she was upset wit me tonight because I did not go along with her little plan. Maybe the first of next week.

She is inrolled in school and is so looking forward to going and without momma always there. See last year, if she was to be in school I had to be there because of the iv medicine she was on, if something happened and it was stopped she could have gone into cardiac arrest. Not a good think, also with her history of hemorhages it was best that I be there. I might work in the afternoons, but not all day.

She does not have to go back to St Louis until the first week of October and we are going to do our best to not go back before our schedule time.

She saw her peditrian on Thursday morning and every thing was looking good. He heard a little crackling in the upper left lobe, but not too much and is just going to watch her real close.

We will have to back on Tues. morn for blood draw to check out her Neoral level, this is one of her immospressant drugs, and the levels are checked about once a month, a little more sometimes, if the levels are to low then we increase her dose. She is currently taking 13 pills in the morning and 3 liquids and she takes 8 pills at night and 2 liquids at night. She also has to do blood pressures, and spirometry (breathing test) pulse oximitry) O xygen level checks and of course her temp. This we do twice a day. and all of this helps to see if she might be rejecting. We are also in touch with her tx cordinator weekly. Debbie is a wonderful person.

Well I think I will go for now and change a picture or two.

Have a good night and thank you for stoping by

Thursday, August 02, 2001 at 01:05 AM (CDT)

This is for all the new friends that we met at St Louis Children's hopital. Some of them will remain life long friends.

Ashley, you are almost like a second daughter to me, you and Christina have been through a lot and there is a special bond that has developed between your family and ours, even as I chat with you right now I can hear you laugh as we talk about you know who! I will make sure to get his picture in here soon, both of the docs. But you are still too young:-)

Sunnye, I don't know if there is anything that can bring two people from so far apart together like this has, it seems like it has been a long long road in some ways but in others it seems like it just started. I know we will always tight, and finishing each others sentences!

All of the nurses on 7 west are wonderful people, you all treat our kids like they were your own, you and all of the PICU nurses.

I can go on, but it is getting very late and we have a Doctor's appointment in the morning. I will finish this later tomorrow, or I guess it will be today

Wednesday, August 01, 2001 at 04:33 PM (CDT)

We are home! After another 3.5 weeks in St Louis

We arrived home yesterday around 9:oo pm.

Christina was able to go swimming before we left to come home, she had a time. When she got home that was one of the first things she told everyone was she was able to go swimming. I know for some this seems kind of silly, but she has not really been able to swim for about 2 years, due to an iv central line. Her line is now known as a port and it is location in her left side just under the skin.

Her brothers are very happy to see her again, they were almost fighting as to who was going to play with her and what they were going to play.

Well, I will go now, I hope to write a little bit every now and then, I will let you know of any changes that happen, as of right now we are going to be going back to SLCH either in Sept or Oct. hopefully we will be able to stay home longer than 3 weeks this time.

Thursday, July 26, 2001 at 01:10 PM (CDT)

Hello, we just want to say thank you for stoppping by and visiting our page. Here is a little history about Christina. She is 8 years old and has two brothers, Josiah who is 9 and Stephan who is 6, she also has a little dog name Alexandria.

When she was 33 months she was dx with Atrial and Ventricular Septal defects, and Pulmonary Hypertension. She was doing great until December of 1999, we were referred to St. Louis Children's Hospital in January of 2000. There they placed her on an IV drug called Flolan. This drug ran 24/7's and she carried a little iv pump with her all the time. In July of 2000 she started having problems again, she was coughing up blood, and was then placed on the lung transplant list. Before transplant she has suffered about 4 TIA's (mini strokes) the cause was unknown. We were told that they have not had a child who had hemmoraged and who had TIA's and to treat one could cause the other.

On January 29, 2001 Christina got her second chance. She underwent heart repair and tranplant of her new lungs. It was the longest day of my life. She was in surgery for about 9 hours. She had some complications while in ICU that caused her to stay there for almost 5 weeks. She had problems coming off of the vent, and after 4 weeks was trached. We finally left the hospital in March. We were able to go home to Neosho in June, and three weeks later we came back. We are still here and it has been three weeks.

Christina had to have two open lung biospies and she was also able to have her Broviac removed and a port put in, now she can swim after two years. We are hoping to be able to go home next Tuesday and not come back to St. Louis until the first of October.

This is a very brief su