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Wednesday, July 19, 2006 3:49 PM CDT

It has been so very long since I last updated this page, I wasn't even sure if it was still here. I will give a quick update about our last couple full beyond belief years! As most know (I think I put this on the page, maybe not) 10 months to the day that we lost Alexis we had another beautiful little baby girl Alyssa Lauren. She was born on February 24, 2005. She is now the age Alexis was just before she was diagnosed, and looks so very much like her (her hair is much more blond than red, it just looks like it has been streaked with red hi-lites!) She is running around jibber-jabbering and stealing all of our hearts a little more every day. Her big brothers are almost 13 and 11, so toward the end of last year we decided that Alyssa didn't need to grow up by herself and we got pregnant 'one more time'. At the end of May we had the ultrasound done - we were kind of hoping for another girl, but I really didn't mind either one. What we were NOT prepared for was to hear there were TWO little girls coming!! Oh my. I was glad I was already lying down, Blake is excited beyond belief. He has always wanted twins. I always told him to dream on, they just weren't happening in this family. So much for what I say. We are looking forward with great anticipation to meet Natalie and Nicole in September. They are due on the 25th but I will most likely have them at the very beginning - we are thinking probably around 37 weeks. I am doing quite well for an almost 40 year old pregnant woman, I have (for the only time in 5 pregnancies) gestational diabetes so I am "off " sugars and starches but surviving just knowing it will only be for a few more weeks! The upside of that diet is that I won't have a lot of baby fat ot lose when I get home! That is, if I don't gain all the weight after they are born when I can eat goodies again!! I really think that this has let me see that I can do without quite so much sugars and carbs, so it shouldn't be too bad. Alyssa will be about 18 months old when her little sisters get here, and we are really looking forward to see how she reacts. I'm afraid she will think they are new doll babies, she loves her babies. She will definitely make out already interesting life a little more interesting!!
Well, I don't know if anyone still reads this even, but just in case you do, I hope all is well with you and yours.

Tuesday, October 25, 2005 12:04 AM CDT

The last time I updated was early August. Hope you had a wonderful summer and are well into having a great fall! Since the last update the boys have been in school for 3 months and are doing well. Alyssa is now 8 months old, and she got her first 2 teeth on her 8 month birthday(yesterday)! She is ruling the roost here, like that's a shock to anyone. Let's see what all she's doing-- of course she can roll, get up on her hands and knees, run everywhere she wants to go in her walker, jabber up a storm, laugh and play with her brothers, eat babyfood, some table food, and drinks out of a sippy cup if you hold it, she won't hold it, too much trouble. How can you wave your arms around and grab everything in sight if you have to worry about holding a cup?! In a couple of weeks, during the boys' school fall break, we are all going to Disney World. All means our family, Blake's sister's family and his parents. That's quite a lot of all, isn't it?! We were originally going to leave Alyssa here with his mom and sister and just take the boys,(and take Alyssa later when she was old enough to know what was going on) but when they found out we were going, they decided it would be more fun if everyone went together. Look out Mouse!
We hope everyone is well, happy, and gearing up for the holidays - they're almost here!!

Tuesday, August 2, 2005 10:42 AM CDT

Happy Summer everyone! It's been busy and hot here in Lindsey land. Summer is almost over, so I thought it was about time for my seasonal update. It seems like that's all it is anymore. Alyssa is getting so big, and starting to do so much. She is already 5 months old! Last Wednesday she started rolling over from her belly to her back, and Saturday she started talking up a storm. Not just a little jibber-jabber, she goes on and on for several minutes at a time, her face so serious and every once in a while she will stop and giggle. I just wish I knew what she was saying. None of our other children have ever talked quite that much at such and early age. She is eating baby food, sitting in her walker and moving a bit, but she loves being up. Of course, she has everyone wrapped around her little finger. The boys are still crazy about her, getting her to laugh at them and being such good big brothers. They start school on the 10th - just a week from tomorrow. Hard to believe, but I won't miss the fighting. They usually are pretty good with eachother, but once they get into it, they do it whole heartedly. I think sometime they act like they are fighting when they really aren't mad at each other just to get on my nerves - can you imaging that!?! Blake is staying busy as usual. He did take a couple of weeks off this summer; we went camping the first week in July and went to the beach at the end of July. We are going to go to Smith Lake here in Cullman this afternoon and evening. Blake's dad has a pontoon boat, so we can all go and enjoy each other. Blake's dad, the boys and their cousins are already there, I'm meeting Blake when he gets off work.
We have past several milestones these last few months. In April Alexis had been gone a year, and on the 28th of July she would have turned 5. Hard to believe she would be starting kindergarten this year. Adam is already going into 6ht grade, his last year at St. Paul's. Isaac is going into 4th and will have a man teacher this year. He is looking forward to it, but is kind of aprehensive also. Adam had Mr. Heinze, so Isaac knows he's fun, but still, the boys are so different they have both reacted differently to all the teachers. Isaac's teacher last year was his favorite so far, and she is the wife of his teacher this year, so that's a good sign. It's been a good summer, but not quite as calm and lazy as I had planned on it being! Oh well, it never is. Have a great August!!

Monday, June 27, 2005 12:37 AM CDT

Finally, an update!!
As you have noticed, we have been busy and I have been terrible about updating. Alyssa is now 4 months old, 14 lbs 8 oz and 26 inches long. Quite a change from that little 6 pounder we had in early March. She has several beautiful rolls of baby fat on her legs and multiple chins. She needs to enjoy it while people think they are cute! And they are oh so very cute. She is a twin of Alexis, only about a month behind in looks and weight. Alexis was really a chunk!! She is beginning to eat baby food, so far really likes sweet potatoes and green beans, not so crazy about rice cereal. We went today and got her shots, so she is sleeping right now. She did well with her 2 month shots, so I am not anicipating any problems this time. She is smiling and laughing, kicking and lifting her head up all the time. She sleeps all night - like 9 to 10 hours at a stretch! We have the ideal baby, I'm just waiting for the talking and walking to kick in, then we will be busy for sure!! The boys have finally finished baseball. They both did well, and are already talking about next year. They left this morning to go to camp with our church children's group. They will be gone until Thursday afternoon. Blessed quietness!! It's hard to believe they will start back to school in just a little over a month. When they get back we will go camping for a week and we have a beach trip planned at the end of July. It's been a fun summer so far, not too restful but busy and enjoyable. Hope you all are having a good time and take some time to relax and enjoy the sunshine!!

Thursday, March 3, 2005 3:27 PM CST

Hi! Just a quick update on the new Lindsey princess.
First things first, her hospital picture is available to see at www.bwmc.com/cws/VirtualNursery.aspx (or just search brookwood womens medical center and click on the virtual nursery. You will just have to know the date of birth, which is 2/24/05 and her name, Alyssa L.
We had to visit Alyssa's pediatrician this past Tuesday and her biliruben count was high, so she has been having home phototherapy for the past couple of days. It is just a pad with the blue light that wraps all the way around her. That doesn't say too much, considering all the way around her is about the size of your average toy doll. She is doing well, even though we have to go by the doctor's office every day for a heel stick so they can check her levels. They are hopeful that tomorrow will be the last day that the blood checks are necessary, which means she will be off the light tomorrow. I sure hope so! The first Friday of every month is Isaac's share day at school, and he wants to share Alyssa. Both the boys are so very proud of their baby sister. They can't get over how tiny and perfect she is. Her mom and dad can't either! Woops! Time to go feed the bottomless pit! Hope you all are doing well! Later...

Monday, February 28, 2005 6:40 PM CST

Hello again! We are pleased to announce the arrival of Alyssa Lauren Lindsey!! The details are: date of birth is February 24th, 2:21pm; 6pounds 13ounces; 20inches long. She has light brown hair with blond highlights. It really does look like that, and she has lots of it -- yes, I had terrible indigestion; that 'old wives tale' is true! Being typical me, things couldn't really go normal. I went in to the hospital early Thursday morning, they eventually came in, tried to break my water (notice I said tried) and hooked up the pictosin (sorry all you medical people, I'm sure that's spelled wrong, but that's the phoneic spelling at least!!) Anyway, a little over 2 hours later I still hadn't done anything. I was starting to get worried that I may be there for a while, and then another nurse walked in the room and realized that although the IV was running, it was running onto the floor. OOPS!! In all the excitement of trying to break my water and the doctor asking the nurse to push on my belly she forgot to hook the tubing up to my arm. The floor was having some great contractions by that time! I finally got started at 10am. At 1:35 I was at 5 so the doctor came back in and broke my water. by 1:45 I was at 7 and she was born at 2:21. Now that was how it was supposed to go, only a little over 2 hours late. We are all fine, we gotome Saturday around 2:30 and have been loving it ever since. We go see our pediatrician in the morning, since we had to use the 'in house' one at the hospital in Birmingham. Alyssa has actually laid in her bassinet a couple of hours today since it was just her and I by ourselves at home and I needed to do a little housework - for some reason those clothes keep getting dirty no matter what else is going on! Gotta go.. I left Isaac holding her and by now I'm sure Adam is fuming that it's his turn. They love her like crazy, and she is one more thing for them to fuss about. You should hear them trying to talk their daddy into giving her up. I think they've finally figured out that one is a lost cause! I'll try to get a picture on the site soon. Happy March

Wednesday, February 16, 2005 12:28 AM CST

Finally some baby news to report!! I went for my weekly checkup yesterday and we set a date for induction! Alyssa will be here on Thursday the 24th of February. The boys are beside themselves, especially since they are out of school Thursday and Friday for winter break - plenty of baby time. I sure am glad I will have to hold her to feed her or I may never get hold of the child! They forget to tell you that advantage of not bottle feeding! We are all excited, the boys have no worries til then, I'm trying to think of what all needs to be done by then, and no one can wait til next week!! I have to be in the hospital at 6 Thursday morning, and Dr. Freeman will be in to 'get me started' by 6:30. If Alyssa is anything like her 3 siblings she will be presenting her little already spoiled self before lunch. wow.
I will try to get to a computer to update after the grand event, but it may be early the following week before I have a chance. In this case, no news will be good news for a while! It's been a while since I've had to work around a newborn, and I know we will all be turned upside-down for a while. What fun! Until then...

Monday, January 24, 2005 12:23 AM CST

Time for a semi-annual update:Well,evidentally today is not the day I was meant to update,but I will try, try again. I got almost done with what I was writing and hit the wrong button (I still don't know what I hit) and it deleted everything I had just written, put it in history, or something. Gotta love computers!!
What I was writing was that we are all doing well, the boys are enjoying school, have great teachers, and are looking forward to meeting their new baby sister. Blake is staying busy hunting and building,I still haven't figured out which he has been doing more of this past month, but he stays busy all the time. He and the boys are planning on going on a hunting trip this weekend since it will be the end of deer season. Then comes ducks, turkey, and who knows what else. I am looking forward to them having some 'male bonding' time, and I plan on visiting a mall somewhere, watching a girlie movie, and just enjoying the peace and quiet. I am not making too many plans, because just as sure as I do they won't go!
February is almost upon us, then the much looked forward to month of March! Next Tuesday (Feb. 1) is my next Dr. appointment, then I go every week already. Wow! That's almost the end! I woke up this morning about 15 minutes before my alarm went off - don't you just love that - and got thinking that I really do need to start cleaning out that room and thinking about getting ready for this baby! It just seems like she will never get here, and then we are going to end up rushing around like headless chickens getting everything ready!! Yikes! So I came in here and got on the computer instead of doing that. Go figure!
My glucose ended up being fine, I have gained 19 pounds, and I am carrying this baby all up front. I don't know how this poor ol' belly is going to stretch much more, and they say these next few weeks are when the growing really kicks in. The boys love to lay with their head on my tummy and poke and aggravate Alyssa so she kicks them and moves around a lot. They think it's pretty cool to see my big ol' belly move around, and they are right. It is amazing. A miracle in the making. Of course they are 'fighting' about what she will look like, her hair color, and all those things that they really have any control over. Gotta love those boys.
Things will probably be pretty busy for the next couple of months, but I will make sure to make 'the announcement' as soon as I am able when our family grows again. Have a super Valentines Day and make sure to give your sweety a kiss.

Wednesday, December 22, 2004 2:37 PM CST

Happy Holidays, Merry Christmas, Happy New Year! I thought I may as well get it all done at once! As usual, no news is good news right now. Since we found out that our little one is a princess in waiting, we have had an eventful couple of months, nothing exciting, just busy. Blake has gotten on the hunting kick, and spends a lot of time enjoying nature - only one doe has been the result, and we are enjoying summer sausage and jerkey (at least the boys are, I can eat only a little at a time, although I will admit it is very good). The boys and I went to Chatanooga to visit my family for Thanksgiving, and after that they had field trips and stayed busy with the Christmas activities at school. They are finally out for a couple of weeks. We are having our usual at home Christmas, visiting family and grandparents all day.HoHoHo
I am doing fine with my pregnancy. This past Monday I had to take the glucose tolerance test and flunked it, which meant I had to go back today and take the 3 hour version. OH joy. Thankfully I passed it - the doctor said I was "normal"! Boy, what he doesn't know!! ha
We are thankful that we are here together with family and that we have so many friends who are thinking of us, praying for us, and keeping us encouraged. It was quite a little emotional getting the tree up this year, and although I did decorate I didn't do as much as normal. Just didn't feel up to it all. I am so thankful we have our little Alyssa to look forward to. What a blessing she is already, and making things a little easier.
Hope you all have a blessed and peaceful holiday season.

Wednesday, November 3, 2004 2:46 PM CST

Despite the constant rain for the past 2 days, we are all feeling sunny and happy. Yesterday's doctor's appointment went very well! We got to 'see' our little baby, and everything is perfect as it should be. We got some great photos to show off, and are proud to announce that Alyssa Lauren is right on schedule to be born early March! What a relief to get the suspence of "what is it" over with!! I know most were 'hoping' for a girl, but not many said it, I know I didn't because I didn't want people to think I would disappointed with a boy - thank goodness I don't have to worry about dealing with that! The boys haven't quite been able to get the grins off their faces yet, and neither have the rest of us. Four months seem like such a long time to wait, but thankfully they will be a very full 4 months with birthdays (November and January), Thanksgiving, Christmas, and New Years to keep us all hopping! At the end of every month I seem to wonder where that month went, and they all go by so fast.
I hope everyone is having a great fall, keeping one step ahead of the rat race, and enjoying every minute you have with the ones you love.

Tuesday, October 12, 2004 12:15 AM CDT

Well, since all that I had mentioned we are going to do in my last update has been done I guess I'd better let you know how it all went! Isaac's gymnastics are going great. He still loves it, wishes he could do it more. Adam is on Scholor's Bowl team at school. They compete with other schools in general knowledge question tournaments. We are all learning a lot of interesting trivia! The Ride For Kids in September went very well. The motorcyclists raised $101,000 for pediatric brain tumor research during the ceremony Richard Brown, one of Alexis' nurse practitioners, read a very touching tribute to those who weren't there this year. The day went well, the weather was wonderful, and all are looking forward to next year. The first Saturday in October was a memorial service at Children's Hospital. Another emotional and touching service. There were several doctors, nurses and others we knew from the 10 months spent there. They are so thoughtful to put together these services to let us know they haven't forgotten our children. Then on October 5th I had another doctors appointment. All is going well, I have gained a whole 4 pounds - about that many inches too! We heard the heartbeat again, and I got the all clear to enjoy my anniversary vacation. Blake and I left Huntsvill airport at 8am Wednesday, went to Dallas and then Calgary Canada. After we arrived, 3:30 we had a couple hours worth of driving to get to our final destination - Banff Springs Hotel. Wow. What an experience! We were on the top floor of the castle in the Canadian Rockies, if you see any famous hotels of Canada, this one is always at the top of the list. We enjoyed a few days of shopping, hiking, horse back riding in the mountains, and lots of sightseeing. We spent 3 nights there and then 2 at the Chateau Lake Louise, another hour north of Banff. More sightseeing and enjoying the beautiful Canadian Rockies. We came home Monday the 11th - or would you consider it Tuesday since we got in a little after midnight?! It was a good time for Blake and I to spent some "us" time, and I'm sure it will be the last trip by ourselves for quite a while! We were glad to get back home and start to get back into the routine.
My next doctor's appointment will be the 2nd of November - election day!- and we will have our ultrasound first thing. Yes, we are going to find out what 'it' is. It will be nice to say he or she, not it. I have not yet felt any movement, but it will come soon, and if this one is like the other 3 once it starts it won't stop! Like we can't wait for them to walk and talk, then we wish they would be still and hush for 3 seconds at a time! Hope all is going well with you. Have a spectacular fall season - get out and enjoy the outdoors for a while! Until November 2nd....

Saturday, September 11, 2004 11:01 AM CDT

Yes, it's been a while. Yes, everything is still ok. Yes, I have been crazy busy, and it's been good. The boys were out of school on both Friday and Monday for Labor Day, so we left after school Thursday and met Blake's parents at David Crockett State Park in Lawrenceburg, TN. We got home Monday evening. We canoed down the Buffalo River (twice) and rode ungodly miles on our bikes at the park. I definitely got my exercise in that weekend!! When we got home Monday night there was a message on the answering machine from the principal of the boys school wanting me to sub for the next couple of days, so after my doctor's appointment Tues. morning - we heard the heartbeat (singular!)- I went to school and was Isaac's teacher for the rest of the day, Wednesday and Thursday. It went very well, I don't think I messed them up on anything too bad, although the poor things didn't get the science review they needed, I am indeed a science dummy. When one of the kids asked me if an answer on their worksheet was right, I had to tell them I didn't have a clue. When was the last time you thought about the lifecycle of an animal? Yikes! Who knew there were so many stages of developement inside the egg? And why did each one have to be named crazy names? I think all the kids were glad when Mrs. Heinze came back on Friday so they had at least one day of 'normal' for the week!
Isaac has found his 'sport'. He started taking gymnastics 3 weeks ago and loves it. And that is an understatement. He is very good at it too, which I'm sure helps his attitude toward it. You should see him hop all the way down the balance beam! He informed me the first day that he 'stuck' the landing. That red hair pops and the grin never leaves his face the whole hour. He informed me that he really needed to go more than one hour a week. He put it this way- "How am I supposed to get to the Olympics on one hour a week?! I know they said Paul (Hamm) practiced more than that!" So look out men's gymnastics in a decade or so!! It seems to be really good for him to have found something that he is good at, especially since it is something that Adam or any of his cousins doesn't do.
Adam is going through the whine stage - I was hoping that was just a girl thing and I wouldn't have to deal with it. Wishful thinking! He is doing well in school and enjoying it, but he thinks everything Isaac does is meant to directly insult him or 'be mean'. Isaac's loud personality doesn't help the situation, but we are trying to help Adam understand that as long as he has in his mind that everyone is picking on him it will seem that way. The fights and screams I hear on a daily basis would make you cringe!!
Blake is staying busy as usual. He just got braces this past Thursday again. This time it is to realign his jaw. He had TMJ surgery last year, and this is the follow up treatment for that. I think he has unknowingly got Isaac off the kick of wanting braces. Isaac has already seen what a pain it is just trying to keep junk out of them and brushing them. A little girl in his class has them and told him it didn't hurt at all, and Blake has let him know she was crazy.
Blake and I are going to Nashville this weekend for a couple's conference (with 8 other couples from our church). We are looking forward to it. Benny and Rita will be keeping our boys as well as Jody's 3 kids, so you may need to say a prayer for them... Then from October 6 through the 11th Blake and I will be getting away all on our own for our 15th anniversary. We are going up to Calgary Canada to Banff Springs and Lake Louise. We had talked about going there on our honeymoon, but decided we needed a few things to get started instead. We hadn't really talked about it that much since, just mentioned it every once in a while when we saw the area on TV and such. It will be nice to get away and relax with just each other for a while. Again, Nana and Papa are coming to the rescue with the boys. Busy, busy, busy.
This is really long, but since I haven't 'talked' in a while, and don't know when I will again, I thought I'd let you know how we all are doing. We should have our sonogram done to find out 'what' we will be having in early November. My next appointment is October 5 (the day before we go to Canada) and I'm sure Dr. Freeman will schedule it then. (I'll make sure he does!) I will let you know what we find out, but hopefully I will update before that!
This Patriot Day, and every day, remember our troops, our President and the other leaders of our country.
September is National Childhood Cancer Awareness Month. If you have a gold ribbon, don't forget to wear it!

Saturday, August 21, 2004 7:13 AM CDT

It is peaceful and quiet this early Saturday morning. For now. This is Disciple Now weekend at our church, which is an annual youth weekend where the youth are split into their different agegroups (and 'gender groups!) and stay at different houses, then they meet during the day and do things, have devotional meetings, and just get to hand out and get to know each othere better. For the past 3 years we have hosted the 'older girls', which means 9-12th grades. They like coming here because we have enough bathrooms for them all to get ready, and we always enjoy having them over. Even though it means no sleep, or none to speak of! Right now they have gone to our local school, right down the road to a prayer walk. This evening we are going to Youthquake here in Cullman. Sounds like it will be fun.
Everything else here is going as normal as it usually does around our house! The boys have started school and seem to really like their teachers. Their favorite thing about them is that neither of their teachers give weekend homework! I like that too. They need time to play and do things together without worrying about when they are going to get their work done. I have substituted in the school one day last week. I subbed for a teacher's aid in the part time PK4 class. The only class I dreaded. That is the class Alexis would have been in. Wouldn't you know that was the first one I got called for?! There is one spot in the class not filled, as there was last year in that class. It was pretty emotionally draining, but I'm glad I did it and got that 'first time' over with. I could just picture Alexis, with that red hair flying and those blue eyes twinkling doing all the things with the other little ones. Boy, Mrs. Tucker really would have had her hands full this year! She has a few years of 'rest' before she gets our latest edition! Speaking of the latest edition, it seems to be doing fine. I sure is making a whale of it's mom in short order! I am stubbornly refusing to wear maternity pants yet, but my pants are getting stretched beyond endurance, and I have started to use the ol' rubber band in the button hole trick. I go back on the 7th of September, only a couple of weeks, and I look forward to hearing that little heart beat. Not much else going on, just staying busy and trying to keep everything running smoothly. God bless!

Monday, August 9, 2004 2:34 PM CDT

What a peaceful day this has been! Blake took both the boys to work with him today so I could go to the doctor by myself. They got up at 4:30 this morning, so they will come home tired and dirtier than you could ever imagine possible. They usually take a 'nap' from as soon as they eat a biscuit until the sun is well up. Then they go full blast seeing which one can transfer the most dirt from the worksite to home. They love it. Every once in a while they will actually do a little work too.
My doctor's visit was a pretty routine first one. I am just 9 weeks, and although we tried to hear a heartbeat it is still a little early (usually they hear it at 10 weeks). He wasn't looking for 2, just one! Like I said, I have just popped the elastic in that muscle and he said I was not unusually big for a fourth pregnancy. I haven't gained weight yet either(!). Next appointment,Sept.6, we will for sure hear a heartbeat. All is going well.
A couple of months ago a lady at my church asked if I would mind if her daughter, who runs marathons, ran in memory of Alexis. She is running in November in New York in a marathon raising money for children's cancer research. Her name is Cheri Jones, and she is a nurse from Decatur. To see her website, which features Alexis, go to www.mskcc.org/fredsteam. Then click Make a Donation, Find a runner, type in Cheri Jones from Decatur, AL. You don't have to chose an event. This will take you to her website (you don't have to make a donation to go there, but I encourage you to!!) I really appreciate Cheri remembering Alexis in this way.
Tomorrow evening is Open House at school, and the boys will get to meet their teachers (Adam's class gets to break a new one in this year), see who is and isn't coming back (usually a trauma for one or the other), and maybe get to meet some new friends. Then on Wednesday morning it's good ol' school again. Hard for even me to believe it's already time again. Time flies, even when you aren't necessarily having fun!
Happy back to school to all! (especially parents!!)

Monday, August 9, 2004 2:11 PM CDT

Today is so nice and peaceful. This morning when I got up it was to an empty house - Blake, bless his soul, took both boys to work with him so I wouldn't have to find somewhere for them to go while I went to the doctor. I'm sure they will come home tired and filthy - you would not believe how much dirt they can carry on their little selves. The doctor's appointment was routine - I am just 9 weeks,a little too soon to hear a heartbeat (they usually hear it at 10 weeks) but next time we will hear it for sure. The doctor said it was indeed more than likely A heartbeat, not plural!! I have, like I said, just popped the elastic in that muscle with the other 3! My clothes are beginning to get snug, but I have not broken down and worn maternity clothes yet! Sorry, but 9 weeks is just too early for that!
In November a girl is running a marathon in New York in memory/honor of Alexis. Her name is Cheri Jones, she is from Decatur, and her mother goes to church with me. If you would like to see more information, her website it www.mskcc.org/fredsteam. Look at the link for Aubrey's fund and I think you can get the information on Cheri Jones, one of the runners in the Nov. NY marathon there. There is a little bit about Alexis and a picture of her on Cheri's website. It is a race to raise support for pediatric cancer research. I really appreciate Cheri for remembering Alexis in this way.
Tomorrow evening is open house at school, the boys will be meeting their teachers, see who is coming back and who isn't (that's usually a trauma with one or the other of them) and see their new classrooms. Then Wednesday it's off to school again already. wow. Time flies, and you don't even have to be having fun! Happy Back-to- School to all you moms, dads, and kids!

Wednesday, August 4, 2004 12:30 AM CDT

One week til school starts - you wouldn't think I was looking forward to it or anything, would you?! I don't know how in the world Isaac is going to sit through an entire school day with his mouth shut. His head just might explode! Adam will have a brand new teacher this year. I just found out yesterday that we will have new teachers in both 5th and 6th grades. He is looking forward to meeting her and seeing his buddies. Isaac isn't looking forward to much except playing kickball at recess! Should be an interesting year, if nothing else.
Today Alexis' tombstone was delivered. It is beautiful, but boy it makes that spot so permanent. It looks so small there with all the big 'old people' double stones. (No offence to all the people buried around her, but you know what I mean.) The boys were not with Blake and I when we picked the stone out, and we hadn't told anyone what it looked like, so they went with me when I met the men to set it. They were very interested in how they did everything and why it was done the way it was done, and they liked the stone - when we went to Tennessee last month we had visited several old cemeteries where my mother-in-laws family was buried, and the boys had looked at a lot of stones there. Isaac kept saying he liked the lambs on the children's stones. Alexis' has a lamb on it, and he didn't know it at the time. Adam didn't say much about it, but that's pretty normal for him. He did say it was pretty and he was glad we picked that one out. They went with me to the florist and they each picked out a little butterfly to put in the arrangement we had made for the vase. I think that made them feel better.
I go to the doctor this coming Monday for my first 'baby visit'. I hope they will be able to hear the heartbeat then, but it might be too early. I can't remember when it was with the others - imagine that! Several people have so kindly mentioned that I am already looking big, maybe it's twins. I hate to tell them it's just baby #4 and there is not a smidge of muscle left to keep the fat in place!
Well, the boys are being too quiet for too long, so I'd better go check things out!

Wednesday, July 28, 2004 3:25 PM CDT

Happy Birthday to Alexis. Can you just imagine the birthday party she is having?! She really only had one 'good' birthday here with us, her first one. We had a big cookout and lots of friends and family were here to help us celebrate. Her second birthday was in PICU at CHildren's Hospital - she had had a seizure a couple of nights before and was finally starting to do better. Her doctor and a couple of residents (Dr.s Berkow, Russel and Eidson) came in her room and with a Tigger, a huge card signed by several doctors and nurses, and sang Happy Birthday to her. Then Nana and Papa brought the boys and we had a few visitors. Last year she was home and the boys made candy butterflies for her cake. It was just the family here then, and Alexis sat at the table, tried to take her "Birthday Princess" party hat off and drank out of her sippy cup.
Today the boys and I went and got Lexi some balloons and took them out to her. The boys wrote her a note, put them in a jar and they dug a hole by her to put it in.
We just got back yesterday from Panama City Beach. We went last Thursday and stayed for 6 days. We had a good time, the boys went deep sea fishing and we had a fun day shopping in Destin at the outlet mall.
Blake just came in, so I gotta run.

Thursday, July 15, 2004 2:49 PM CDT

Finally, some news to share! And some exciting news at that - Adam and Isaac are going to have a little sister - ok, so maybe a brother - in March! We found out yesterday, and everyone is excited as can be. I usually don't get sick or have any pregnancy troubles, so I don't plan on having any this time(!). Blake and I discussed quite a bit before we started this if it would be ok if we happened to have a boy, and we decided we would be alright with it, although we would really like a little girl. By the time it comes we will know and be thrilled with whatever. The boys are excited and are already picking out names. We did say we have veto rights on any name they choose, and I'm sure they will come up with some doozies.
We are going to take Ryan, my nephew to Chatanooga this Saturday, then next Thursday we will be going to the beach until Tuesday, then 2 days later Adam will leave for a 3 day camp, then it will be August already!! March seems like so very far away, but I'm sure it will be here before it seems possible, and I'm sure by the time it gets here I will be more than ready for it!
Hope you all are having a fun and exciting summer. Wear that sunscreen!
--Alice and itty bitty.

Tuesday, July 13, 2004 6:43 AM CDT

We hope everyone had a wonderful 4th of July! We celebrated with a houseful. My mother-in-law's family always gets together on the 4th, and this year was my year to host it. It was fun to have everyone over and enjoying each other's company. My dad, sister and 3 teens came from South Carolina, so we were hopping for sure! My 14 year old nephew, Ryan, stayed and will be here until this coming Saturday. My boys are going to be lost when he goes back home. He has been entertaining them well. Thankfully, the week after he leaves we will be going to the beach, so they shouldn't stay too bored for long. Summer vacation is almost over - it was a shock to go to Wal Mart yesterday and already see all the school supplies out. I shouldn't have been surprised at that, though since they will have Christmas out in early October if not September. Retail is crazy.
Nothing major going on, just the same ol' madness! Hope you all enjoy your summer vacation - or your kid's summer vacation. God bless!

Wednesday, June 30, 2004 8:32 AM CDT

Wow, time continues to fly, doesn't it? Here June is already behind us and summer vacation half way over. The boys start back to school August 11, but we aren't mentioning that right now! We just got home from a soggy camping trip at Davy Crockett state park. We left here early last Wednesday morning and came back Sunday afternoon. The boys had a great time; they always enjoy catching crawdads in the creek there. This year the creek was so huge and running so fast that they couldn't get in the middle and play like they usually do. We were going to go on a canoe trip Saturday but the river was so fast they discourage us taking children under 12, so we didn't go. We are eagerly awaiting my family's coming on the weekend of the 4th, and my nephew will stay with us for 2 weeks. This will be his 3rd summer to do so, and we always enjoy his visits. We are going to the beach at the end of the month, and Adam has a long weekend church camp, other than that it will be the usual craziness!!
Blake is staying busier than busy building houses and keeping ours looking wonderful. He has a full time job in the summer just keeping the yard mowed! A couple of weeks ago one of our goats had twins, and they are so cute! That is the third baby goat we have had since Memorial Day. We have a few more 'on the way' and the boys are looking forward to them. Gotta go break up a fight before it turns bloody! Have a great 4th.

Wednesday, June 16, 2004 2:33 PM CDT

Much time has passed since the last update - shocker! We have been running like the proverbial headless chickens since late May. The boys didn't get out of school until the 4th of June, although the last week was party and half day events at school. The week they got out our church had VBS, and on that Friday the boys left for the weekend sibling camp at Camp Smile-A-Mile. They have been really looking forward to going again - they went last year for the first time. They had a wonderful time, Isaac won 1st place for his cowboy outfit on their western dance night, and Adam got 2nd place for his age group. Evidentally Adam cleaned house on the games, they said he won 3 different games and then he was the camp hoola hoop champion! Blake and I went Sunday morning to pick them up.
Yesterday they went to Camp Hope here in Cullman. It is a one day camp with Hospice for children 6 - 12 who have lost loved ones. They played several games talking about their loved one, they decorated bags, made a memory journal and at the end they wrote notes, tied them to balloons, and let them go. It was really sweet. Adam put his note on his balloon and let it go, but Isaac kept his note because he wanted to "take it and bury it by Alexis because if it goes up in a balloon it will just fall down to the ground somewhere and be lost". So we are going to make a little memory jar with the boys one day soon and let them take it and bury it in her plot. We have not sodded it yet, I think we will probably do that soon. Thanks to all the rain lately it has about settled all it is going to. While the boys were at Camp Hope Blake and I went and picked out and ordered a headstone for Alexis. It should be delivered in about 6 weeks, just in time for her birthday. Isaac asked the other day if we were going to celebrate Alexis' birthday this year, so I guess I need to be thinking of something for him to do, probably let him get a special balloon and flower to take to her grave that day. He is so thoughtful sometimes.
I obviously have a few spare moments here finally! The boys are at their Nana's house today; Adam spent the night last night and Isaac went over this morning instead of going with me to get my hair cut - imagine that!
I have not mentioned the curing childhood cancer car tag - if you live in Alabama and would like to help with research, you can commit to purchase a specialty car tag. As with all these special tags, they have to have 1,000 commitments before they will make them, and July is the deadline. $41.25 of the $50 will go to Children's Hospital for cancer research. To pre-purchase, go to your local courthouse and sign an intent to purchase form, or go to www.curingchildhoodcancer.org. This is a great way to help, and we need to get it done in the next few weeks!

Monday, June 7, 2004 3:36 PM CDT

It's already June, already 2 years since we learned Alexis had brain cancer. Yesterday was "the day", in fact. Isn't it funny how I can't remember what happened last week, but I can remember in detail every minute of that day? About this time today 2 years ago we met with Dr. Blount and he let us know the details of what her MRI showed, what we could do, and we began the journey. After meeting with him they took Alexis to a regular room and within an hour she had pulled out her IVs along with the temporary shunt they had already put in. I think back at how quickly she changed, how quickly everything we knew changed.
The boys are excited to be 'free' from school, they are already starting the 'what can we do' and then not wanting to do anything I suggest. They are playing together better than they have, but it doesn't take much to set each other off. Friday they are going to Camp Smile-A-Mile sibling camp for the weekend. They are really looking forward to it, and I hope they will be able to let some of the feelings out I'm sure they have pushed way down. It sure will seem quiet for 2 days without them, that's for sure! Blake and I go pick them up Sunday morning.
We have become regular goat farmers here! We now have 37 goats plus one new baby, and another mama about to 'explode' any time! The boys really enjoy them, and Blake has spent the past several weekend getting the fence ready for them to expand their horizons into our front field. The babies are the cutest things, and the boys are staying busy getting them all named.
Enjoy your summer, wether you are traveling or just lazying the days away ...

Monday, May 24, 2004 10:56 AM CDT

It's been a month. Seems like yesterday, seems like forever. There are times when I look at pictures of Alexis that it seems like I'm looking at a beautiful little girl that lives somewhere far away, that she wasn't really ours, but then when I think of the little things that she had started to do before she got sick, I'm so thankful that I have those pictures to remind me of those sweet, cute moments that almost-two-year-olds experience as they are discovering their world and learning to do things all by themselves. Alexis was just starting to really talk, run, and constantly tag after her brothers, always wanting to ride with Isaac in his John Deere Gator toy, running to Adam when Isaac made her mad, and running to the door when Blake walked in from work yelling "Daddy's home!!!" I have a video of her just a couple weeks before she was diagnosed sitting on Blake's lap reading a Dr. Suess book with him. I am so thankful I have those, but I haven't watched the videos again yet. I know they are there, and one day I will sit and watch them and be able to listen to that little toddler voice again.
For now we are all doing ok I think - what is ok really anyway? I don't know how to answer when people ask how I'm doing. I don't know, I'm just doing what has to be done and then coming home. I did start subbing at the boy's school last week. I've done that one day, and it went ok. I wasn't really the teacher, the class that had the teacher out has an aid, so she was the teacher and I was the aid in her place. That worked really well. I don't really think I will do much more this year, but will probably stay fairly busy with it next year. This is the boy's last full week of school. Next Monday they are off for Memorial Day, Tuesday they have their end-of-year party, and then Thursday and Friday are half days. Seems like they are just there to say they are, but whatever. The summer is starting off on a run. The first week they are out is Vacation Bible School at church, then that weekend is Sibling Camp at Camp Smile A Mile, which the boys are really looking forward to. Then there is a one day camp here, a trip to the beach sometime, eye doctor appointments.... Maybe they won't have too much time to get on each others nerves (or mine) quite so bad. I think that is wishful thinking!
I know I'm rambling, sorry! I really appreciate all your prayers for the family! ya'll are great.

Thursday, May 13, 2004 11:08 AM CDT

And time goes marching on...
We are starting to learn our new 'normal' now. The boys are back in the school routine, Blake is working, and I am passing the days either doing 'stuff' with friends or cleaning the house - yes, I'm still trying to get this house straightened up! Of course with 2 boys, make that 3 with Blake, it is a never-ending job, thankfully. We really do appreciate all those calls, cards and company we have had. It is encouraging to know that Alexis meant, and still means, so much to so many people. Life really is pretty boring now, not much to talk about except how dirty my house stays! Hope you all are enjoying the spring/summer weather. It has been raining here since last night. So much for the slight chance of scattered showers! Don't you just love those weathermen.
We know so many people who are having May birthdays, so if you are one of the many, Happy Birthday to you! Hope you all have a great day, wether it's your birthday or not.

Monday, May 3, 2004 12:35 AM CDT

It's been over a week - it seems like at least a month. I realize that we are doing alright, we had almost 2 years to go through the 'grieving process' so we are pretty much at peace with all the 'stuff' we have been going through. Blake and I were talking the other night, and we don't wish Alexis would come back like she has been for the past couple of years, we just can't believe she ever got sick. To look at pictures of her playing and tearing around here, you could never imagine that the little red head would ever have anything wrong with her. ever.
Thanks is such a little, inadequate, over-used word to express all we feel to everyone who has shown their love and support not only this past week but for the past 2 years. If I could think of a better way to let you all know how much it all means to us, I would write it over and over. We do appreciate you all very much.
The boys seem to be all right - they went back to school Wednesday, then on Thursday they both ended up in the office with a fever and sore throat. They have a throat infection, and were out Thursday and Friday with fever and on antibiotics. They are back today, and hopefully will get back into the swing of things there. Blake is back to work and I am back to doing not much of anything, needing to get the house cleaned up but not getting much of it done! I still go in our room where Alexis was all the time for the past month to check on her, still get up between 8 and 8:30 in the evening to get her medicines and food ready, but I am doing better than I thought I would be. I guess having the boys home sick helped me keep my mind off a lot last week! Well, I guess I had better get busy getting that floor swept - that was my one goal to have done today before Blake gets home, so I better get at it!

Saturday, April 24, 2004 11:22 PM CDT

Not the news I wanted to share...
Alexis went to play in her house in heaven this evening at 7:35pm.
Services are as follows:
Visitation Sunday beginning at 4pm at Williams-McCracken Funeral Home in Cullman. Hwy 278 East. (256)734-3144
Funeral service will be held 3:00 at First Baptist Church of Cullman 2nd Ave. SW. (256)734-5632

She had been having trouble breathing all evening yesterday through the day today. We are all doing alright, I guess. Someone will be at our house all day tomorrow if you need more information, directions, or have any questions or just want to call. Thank you so much for all your prayers, love and concern for our family.

Monday, April 19, 2004 9:20 AM CDT

We made it through another weekend! For some reason, Sundays always kind of make me nervous - if Alexis was going to do something crazy, she used to always do it on Sunday. Of course, that was when we had to take her down to Children's and get admitted or go visit the ER. I guess now she figures since we aren't going to have to make a trip to Birmingham there isn't much reason to go crazy on the weekend. She does seem to make her changes on the weekends still, though. She isn't nearly as responsive as she was just a couple of days ago - she is letting us keep her legs under a blanket, which is a big time 'yuck' for her. We are able to clean her mouth and nose out without a major fuss, and haven't heard her scream at us in a few days. She still 'flops' from one side of the bed to the other every once in a while, but not as much. I guess she is just too tired and feels too bad to do much. I wish we could just hold her for a few minutes, but when I tried to yesterday that was the only time she fussed at me. So we just continue to sit and watch and wait.
The boys are out of school for a late spring break this week, but they went home with Nana and Papa last night after church and are going to set up the camper at Smith Lake Park and go camping and fishing for a while. They are looking forward to that. Blake is staying busy building houses, and I am 'busy' doing not much of anything here. I am enjoying the calm while it lasts...

Friday, April 16, 2004 11:09 AM CDT

Well, the house is quiet once again with just Alexis and I in it. I'm sure by Monday afternoon next week I will be wishing for a little bit of this peace - the boys are out next week for spring break. We had a wonderful Easter with plenty of food and family to help celebrate. Even though it was cool and rainy the kids still hunted eggs and ate plenty of chocolate! Alexis is still resting and enjoying her bed. She is getting a little more restless every once in a while, but her meds are still keeping her pretty comfortable. She isn't getting them too often, usually just once in the mid afternoon and then in the morning and evening. She is sleeping through the night and not gagging at all. We are just hanging around, so if anyone wants to come hang with us, they are welcome! Not much is really going on, so it's hard to write any exciting updates. Hope you all enjoy the weekend! Later

Saturday, April 10, 2004 9:21 AM CDT

Happy Almost Easter! It is starting to get cooler and getting ready to rain here, but we are still all hanging in there and enjoying ourselves. Yesterday Alexis had one of her best days in quite a while. It started off with a night with no wake-ups (yea!) and an early morning play time with Daddy. Alexis played for over 20 minutes, giggling, honking Daddy's nose, and jabbering away. Then in the afternoon Judy Hall (our pastor's wife) came over and got to hold Alexis, rock her, walk around outside and sit for a few minutes on the porch swing. She stayed with Mrs. Judy for about a half and hour before wanting back to bed. She was feeling good all evening. She is still doing pretty much the same, mostly sleeping, but she seems more comfortable this week than she was the week before. She hasn't had to have hardly any medicine during the day, and there have been several evenings that she has ineracted with the boys or Papa and Nana pretty well. We continue to take one day at a time and enjoy every minute she feels like playing. Hope you all have a happy and blessed Easter. Remember, Christmas isn't the only time we need to 'Remember the Reason for the Season' - He's the same yesterday, today and forever.

Sunday, April 4, 2004 10:50 AM CDT

Like usual, it's been too long since the last update, but at least I haven't had anything major to report. Alexis is still resting and that's about it. Friday she started really sleeping the majority of the day as well as all night. She used to reach for whoever touched her to hold her for a second or two, but she doesn't do that anymore. Daddy and Mommy have been the only special ones that she has let hold her, and we have been able to sneak in about 5 minutes at a time about once a day. Friday evening she started throwing up a little bit, she only does it once and then goes back to sleep. I had to shut her overnight feeds off early last night because she was gagging quite a bit, but with the feeds off and a little of that good ol' Zofran she went right back to sleep and had no more troubles. Tomorrow my sisters, dad, neice and nephew will be here for a visit, so unless anything major happens don't be concerned if I am my normal several days without an update self. I can't say enough how much we appreciate all the prayers. We are doing pretty well, not having any really major come-aparts, and most importantly we have the wonderful peace that passes all understanding in our hearts.

Tuesday, March 30, 2004 10:23 AM CST

Good Morning!
After a rough weekend and Monday, we are finally doing all right again. The morphine Alexis was getting was both making her itch like a maniac and not doing a thing for pain, so after a terrible Sunday night in which she was up from 11pm on they got her some new medicine and she is doing better - at least she is comfortable. Until they got the medicine yesterday we gave her the medicine we had on hand in case she had another seizure. She didn't have a seizure, but the medicine helped calm her down and help her get to sleep. She feels better now and she isn't scratching anymore, not that she has any fingernails to scratch with! She was not a happy camper about me cutting her nails, but...
The rest of us are doing ok too. Blake will be a year older tomorrow, but he doesn't care in the least - not like us vain women, huh?! Hard to believe it's almost April, but I think I say that every month now!
Thanks so much for all the prayers, encouragement and support we have received. It really means a lot to know that so many people are thinking of us and especially that they are keeping us in their prayers.

Thursday, March 25, 2004 8:52 PM CST

Wow, Thursday evening again. This has been a rather crazy week. First, Saturday was "The Wedding", which went well despite the fact that I was director. It was very pretty and touching, and I am so glad they are happily married and it's over! Over the weekend Alexis started not doing as well. She is much fussier, her right eyelid is pretty much closed, and she is only playful in spurts. She prefers either Mom or Nana to hold her, and only then standing up. Neither one of us mind at all (understatement of the year there!) but it does get rough on the back after a while. The Hospice nurse came out Wednesday and Alexis got a very small prescription for Morphine, which we only give when absolutely necessary. Usually when she gets fussy a good ol' dose of Tylenol makes her happy, but we did give her one dose of the Roxanol (consentrated form of morphine that is quickly absorbed in her mucus membrane of the inside of her cheek) tonight. She didn't get totally knocked out, but it did help her rest a little. She is resting good at night, which helps us get some rest. We have really enjoyed having my sister Cindy and my dad visiting this week. It is so good to see them and get to spend some time with them both again. Cindy lives in South Africa so needless to say I don't see her much - thank goodness for email!
Really keep Alexis in your prayers, that she will be able to stay comfortable. We wouldn't mind some prayers for the rest of us while you're at it! It's a hard time we are in now, but we know we are by no means alone and that we will be ok. God is good, all the time.
Until later...

Saturday, March 20, 2004 9:32 AM CST

Good morning all,
Just a quick note to say that we are all still doing ok, just a little crazy with everything going on - but that is very normal around here! Alexis is still pretty much her same little red headed self, letting us play when she feels like it, making sure we know when she doesn't! Hopefully next week will be a little calmer than the past few have been - I actually don't have anything on my calendar! Not yet, anyway. I'm sure that will change before I know it. Have a great weekend and thanks for those continued prayers.

Wednesday, March 17, 2004 5:15 PM CST

Today we went back to see Dr. Reddy and we visited some friends on the stem cell unit - nurses and Dr. Sande. Alexis is looking good and acting much better than they thought she would be evidentally because they seemed pleased with her today. We won't go back to the clinic probably, Alexis has a nurse that will come to the house to check on her every Friday now. Alexis is looking good, playing pretty well, and seems to be happy just lying around or being held by any of the many people ready for her to be awake and snuggly. We are staying busy as usual, Adam and I are going on a field trip with his class (4th grade) to Huntsville tomorrow, Blake and I are both in a wedding this weekend, and we continue to run like chickens with our heads cut off!! The boys are doing well, as are Blake and I. Thanks for all the prayers and notes of support. We appreciate all of it. Until later..

Friday, March 5, 2004 9:50 AM CST

Is it raining where you are? We have had a slow steady rain all day. The last two days have been beautiful, sunny and in the 70s. We have really enjoyed them. We are all doing ok, Alexis is doing great. She has been up and playing for the past couple of days. We have had lots of company and calls, and we appreciate them all. We know you have kept us in your prayers, because we would all be beyond hope right now without them. We are taking one day at a time and enjoying each one to the fullest. Isn't that what we should all do anyway? We are thankful that God is in controle and not us. We go back to Clinic 5 on the 17th just for a check up. I will try to keep you all updated, but know that if you don't hear any news for a couple of days it is because we are too busy having good ol' family time. Again, thank you all for the prayers and support.

Tuesday, March 2, 2004 6:28 PM CST

This will be a short and not so sweet update. Alexis had her MRI today and it showed no good news. "IT" has returned. They just did the MRI of the brain, and it showed a tumor and several spots, just like when she was first diagnosed. At least she has the shunt now so she won't have to deal with hydrocephelas. I don't know much else now. Sorry this is so blunt, but... Pray for us.

Monday, March 1, 2004 5:29 PM CST

Happy March! We went to the Dr. today for Alexis' post surgery follow up visit and all there looks fine. I talked to Dr. Reddy's office today about the seizures and CT, all the weekend 'excitement' and Dr. Reddy did not see anything on the CT from Friday that looks like disease - the resident had noticed a 'dense spot' in one spot that he wanted her to look at. Alexis is scheduled for an MRI with contrast tomorrow morning. We will be back home tomorrow evening, so I will update yet again then - I'm not used to this updating more than once a month!! Right now Alexis is playful and her usual red headed self. Thanks for keeping her (and her family) in your prayers.

Saturday, February 28, 2004 1:38 PM CST

Well, much to report, good news/bad news. The good news is that Alexis is home, doing well. The 'bad'news - and it could be much worse, is that she has started having seizure activity again. More good news is that it has not been nearly as bad as the one in January - she did not stop breathing. On Friday afternoon I noticed that Alexis was not using her left arm at all, and after 'testing' her with a few things like giving her a kleenex in her right hand (she squished it and threw it) and then giving her one in her left hand (she didn't acknowledge it) and having someone else hold her (she reached for me with only her right arm) I made the dreaded call to Childrens, and of course they wanted to see her in the ER. Of course, when I started to get her out of her carseat she reached for me with both arms and had full use of that side from then on. It was actually the quickest ER visit we have ever had. They did a shunt series of exrays and then a CT of her head to make sure that the newly revised shunt was working properly and indeed it was. After being there only 3 1/2 hours, and considering all she had done that is quick indeed, we were on our way back home. The neurosurgeons and neurologists all agreed that it was temporary paralysis from a seizure. She was fine for a good hour or so before they sent us home. When Daddy came out to get Alexis out of her carseat she was drooling - not a normal thing for her. She ended up having another seizure, this time it lasted about 3 hours before we got her to the Cullman ER, got in, accessed her port and started meds. She actually quite seizing about 5 minutes before she got the medication, but they kept her overnight to make sure all was well, especially since I had just been to Birmingham. We got home around 11 this morning and Alexis has been ok. She is, of course, sleeping most of the day - she was up late last night and worked hard getting through those seizures. We have an appointment to see Dr. Blount Monday, a follow up from her shunt revision, and both he and Dr. Reddy will look at the CT scan they did last night 1st thing Monday morning. I'm pretty sure they will want to do some more tests to see if anything is going on in the brain. Hopefully we will have a calm rest of the weekend! I'll update again Monday night or Tuesday morning, depending on how late I get in from the Dr.

Wednesday, February 25, 2004 8:38 PM CST

We are home! Alexis had her shunt revision yesterday, the top part of the shunt was 'sluggish' so it was replaced. She did, as usual, very well during surgery and recovery and after a night and a day at the hospital we were sent on our merry way. It is amazing how much better Alexis is acting, so obviously feeling. She has played and stayed awake most of the day. We appreciate all your prayers. Hopefully we won't be having to do these surgeries quite as often as we have been!

Tuesday, February 24, 2004 6:17 AM CST

Just a quick update - you see it's early. Alexis and I are on our way to Children's Hospital again. We went to see Dr. Blount, her neurosurgeon, yesterday and he said her shunt looks like it is not working properly - again. We have to be in One Day at 8:30, surgery probably won't be until at least 10:00. We will spend the night in the hospital tonight and then after morning rounds tomorrow we will probably come home (usually that means around noon). I will try to update tonight on a computer at the hospital, but sometimes that is not possible. Please keep Lexi in your prayers today. The surgery is a "shunt exploration/revision" which means they don't know for sure where the problem is, they go in and test each of the 3 sections and fix what is messed up. We are thankful to have such a talented and caring surgeon and wonderful hospital so close to home.

Thursday, February 19, 2004 12:39 AM CST

Well, in typical Alexis form, "Ain't nothin' normal" around here! For the past couple of weeks Alexis has been napping quite a bit of her days away, so when I called the Dr.s office to get a prescription refill I mentioned it. Her next appointment was scheduled for next Wednesday, and I figured they would probably do a CT scan to check her shunt. Well, that day (Tuesday) we ended up going to the local hospital to get a chemical profile done to see if her electrolytes were messed up - usually a good reason for the sleepiness. For once everything was in the normal range, that in itself is a record for her! Anyway, yesterday we ended up going to Clinic a week early and getting more labwork to check her Tegretol level and get a CT scan. They changed her over to a different seizure medicine and decided that if she was still sleeping the days away by Monday I would have to contact the neurosurgeon's nurse (shunt revision). Would you believe that Alexis stayed awake the entire day at Children's, taking a 45 minute nap at the very end of our visit there, and has been awake all day today?! We really do like Dr. Blount, but thank goodness it doesn't look like we will be calling his nurse for an appointment next week!! I am still in a wait and see frame of mind, but it's looking good so far! Right now Alexis is in her walker, scooting backwards until she hits the coffee table and can't go anymore, but at least she hasn't started having a fit because I'm making her get up. She's 'talked' and played all morning. Go figure. Hope you all have a great weekend and hope to be able to let you know Monday that we aren't calling the Dr.

Tuesday, February 10, 2004 2:41 PM CST

Remember, no news is usually good news! Once again, I just realized how long it's been since I've updated...No excuses, just a big sorry!!

Alexis is doing fine, still fussing if you bother her when she thinks it should be naptime - that's anytime a therapist walks in the door! They have figured her out though, and they just take her away from her napmat in the living room so she can't flop her little red head down on it and ignore them! They are so patient with her, but they do make her get up and explore too. We are really blessed to have such wonderful therapists, Rhonda and Ruthie. Miss Frankie, the teacher at the preschool Alexis is enrolled in (she doesn't go there, but the therapists come to the house from there) comes a couple times a month to play with Alexis and help the occupational therapist do her thing so Alexis will be familiar with her when she does get to go to preschool. The class and teachers sent her Valentines today. She wasn't as impressed with them as her mom was. They had punched a heart out and made it so she could feel it, then all the kids 'signed' it. They really did a good job, especially considering that not only are they preschoolers but all have special needs of one kind or another. The cards are for sure scrapbook bound!
Happy Valentine's Day from Alexis and her family!!

Friday, January 23, 2004 11:41 AM CST

Hope you all are having a wonderful week - this has been a fast and eventful past week for us. Last Friday Alexis spent the afternoon and evening with her Nana and Papa, and after the rest of the family went out to eat I stopped by their house and picked her up.When we got home she was sitting in her Daddy's lap playing like they usually do in the evenings and she got real quiet, then laid down backwards. I went in the living room to pick her up and see if she wanted to lay down and noticed she wasn't breathing right and she was unresponsive, staring, and not blinking. It seemed like she was holding her breath, and then when she would take a breath it was difficult and hard. Long story short, she had a seizure, was barely breathing, and we got her to Cullman Regional where they got her on oxygen,got the seizure stopped, did a CT Scan, which showed no damage had been done to her brain and they called Children's who came and airlifted her to Birmingham. We were in PICU until Monday late morning, went up to 4 Tower, and came home Tuesday afternoon. They did an EEG while we were there,which showed nothing of significance and started her on seizure medicine. When we drove into the garage and Blake came out to get Alexis, she lifted up her arms to him and they went inside and played and laughed like nothing had happened. Actually, she is more playful and 'talkative' since the episode, and she is wearing her hearing aid again, which she had refused to do for the past couple of weeks. Go figure. She has to go back to Clinic on Tuesday so they can check her sodium level(always an issue) and her tegretol level. That is the seizure medicine they have her on, and they have to make sure it is built up to the proper level for regular maintenance. Anyway, we are home now and have had all the excitement we need for quite a while. Sorry I haven't updated sooner on all this, but I couldn't get to a computer at the hospital, and when I got home my new computer had come while I was gone and I just got it set up. Have a great last week of January! God bless.

Wednesday, December 31, 2003 5:44 PM CST

Well, here's the last update for 2003 already! It's hard to believe that it's already been a year since Alexis started her stem cell transplant, a year that we were looking forward to with dread. We are praying for a much less eventful 2004 but have learned that no matter what happens, God is still in controle, He still loves us and He will help us get through whatever we have to go through. Alexis has made it through so many 'incidents' that she shouldn't have, she is doing so much better than many people(who know more than I could ever dream of knowing!) thought was ever possible for her. Whatever she can't do right now is so overshadowed by all she is doing. She is here, she is playing with her family, not to mention all her friends from church, therapies, and just everyday life. She reminds us to be thankful for each day and not take anything for granted. Yes, we know 'good' is a relative term, but she is indeed doing good. She is here, and that is enough for now!
We are getting ready to go to the New Year's Eve family night at church, and so I am going to cut my 'reflections' short, which I am sure you are all thankful for! Blake and the boys have gone on a hunting spree this break - they get up at 4 (yes, AM!!) every Sunday morning, go to a pond to hunt ducks - both the boys have brought home a 'trophy'. Of course, they sleep all afternoon to make up for it! Blake's dad had spied a few deer in the back of his cow pasture, and that's all Blake & Co. needed to hear. They have been 'hunting' - sitting in a tree stand for hours at a time - for the past several days, and this morning Blake got his first buck - a 6 point. They are all so excited. He is going out tomorrow with some other guys from church. Whatever makes 'em happy! I'd rather curl up with a good book inside a nice warm house personally!! We are all doing well, happy, and blessed. We hope you and your family are and continue to be in 2004. Happy New Year!

Monday, December 15, 2003 4:22 PM CST

Ho Ho Ho!! Only 10 days left until Christmas. I thought it was supposed to take forever for it to get here ...what happened?! Alexis and I went out today and just about finished up our shopping. She wasn't so thrilled about it either, but shop we did. Alexis is feeling much better than she did last week - on Tuesday I woke her up around noon to give her some medicine and 'lunch' and noticed yuck coming out of her ear. Not a good thing. Of course the doctor couldn't see her until the next day (she gets to see her regular pediatrician for such as this now). As we knew, she had a really gross ear infection so she got put on antibiotics, both liquid and ear drop form. It was amazing how quickly it kicked in! In just a couple of days there was no sign of ear drainage. Thanks Dr. Thomason!! Now she is just sleeping a little more than normal, but she is awake and 'talking' during the night again. At least it's not all night, just off and on. She is feeling much better and will soon be able to wear her hearing aids again. Ear infections and hearing aids don't mix, as you can imagine. The boys are in their last week of school before Christmas break and they are as excited as 10 and almost 8 year olds can be. Isaac really is looking forward to this break, since it will also include his birthday (the 2nd of January, we didn't plan that one well!!). Blake is as busy as ever and I am pretty normal. I have really been reminded many times lately how blessed we are. We have each other and more than we need and can want. God is good. Don't forget to thank Him this holiday season for His greatest of gifts - His Son. Bless you!

Tuesday, December 2, 2003 12:44 AM CST

Happy Holidays!! December already. This year has gone by so fast. Amazing to think that this time last year we were in the hospital, getting ready for Alexis to go to stem cell and looking forward to a couple of rare weeks at home. So much has happened in a year, and we are so thankful for all of it. Alexis is doing so much better than she was expected to do ... she survived!!
We went to Tennessee for Thanksgiving and spent some time with my Dad and family. It was so nice to be able to take Alexis back to 'Aunt Becky's', we have not been there in almost 2 years! Everybody has had to come to our house because Alexis couldn't travel. We only had to go 2 hours away and the boys really enjoyed seeing their cousins again. It was the first time that my Dad and sisters were able to see Alexis when she was feeling good, wanting to be held and playing again. They really enjoyed it, as did we all. Isn't family great?!
Alexis is doing well, sitting up and playing more than ever, starting to pull up on the couch and stand there for several minutes at a time. She has decided she doesn't want to drink her formula any more, just water. I am giving her a couple of bolus feedings of formula during the day and she is still on an overnight drip, but she is staying healthy and well hydrated, so I'm not complaining! Maybe this is just the calm before she starts eating - I can always hope, anyway!! We have had her hearing aids adjusted again and she is leaving them alone. She is 'saying' a few more sounds and singing her little songs more, so evidentally the hearing aids are doing their job.
Not too much to report, just thanks for keeping us in your thoughts and prayers and have a great holiday season!!

Tuesday, November 18, 2003 9:45 PM CST

Hello again! I am happy to report that I am home with my wonderful family on this fine evening, all are well and we are well rested and relaxed after our outstanding trip. Last week we left Alexis with her Nana and Papa and the boys, Blake and I left for a week with Mickey Mouse & Co. on the Disney Magic Cruise ship. Wow. We had a great time, the boys loved it, Alexis and her grandparents had the time of their lives, and we are finally re-adjusting to 'normal' life again! Just today I got caught up on laundry!! Adam and I celebrated our birthdays today. Adam, our oldest, is already 10!! Never mind how old his mother is. We'll just say she was in her 20's when he was born and leave you guessing just how late those 20's were! He was born 10 minutes after midnight on my birthday we'll just say several years ago!!!
Alexis has been doing very well for quite a while now. No gagging, vomitting, or otherwise doing things too terribly unpleasant for her caretakers! She still isn't eating, but she is being kept very healthy with good ol' Pediasure. I am so thankful she is drinking. She has really become quite playful lately, and she is still jibber-jabbering a lot with people. She really likes to snuggle a lot too. She doesn't just let you hold her, she holds you too. She wraps those little arms around your neck and just squeezes. We are all enjoying her a lot. Thank you all for your continued prayers on her as well as our whole family's behalf. God does hear and answer those prayers!! We hope you all are having a wonderful beginning to your holiday season! God bless.

Wednesday, November 5, 2003 1:15 PM CST

Hi Ya'll! I know it's been a while. Alexis is doing so good there really hasn't been much to 'report'. She is doing all right in her gait trainer. Her physical therapist got a different one for her to use for a while that is more like a walker. She goes backwards in it but won't go forward. She doesn't fuss too much with it, but it's not her favorite thing to do - that would be lay in the floor!! She has a little cold right now but nothing terrible. I am taking her to the 'regular' doctor this afternoon to get it cleared up. She keeps rubbing her nose then her eyes and that's not the best thing in the world to be doing. The boys(yes, that includes Blake) and I are leaving Saturday morning to go on vacation while the boys are on their fall break at school. We are going on a Disney Cruise! We will be leaving Alexis with Blake's mom for the week, so please keep everyone in your prayers!! Rita (that's Blake's mom) stayed up at the hospital to give us family time and she keeps Alexis quite frequently, but this is a bigger deal. We are praying that Alexis keeps her no-throw up streak going and that she is a happy camper. She will be spoiled rotten for sure, but that's what grandparents are for, isn't it?! The boys are beyond excited. Isaac has never flown and Adam did once when he was almost 2 so he really doesn't remember it, even though he says he does.
I have changed my email address in case any of you get a wild hair to email me. The new address is on Alexis' page. We have had a busy but enjoyable fall - even though it has been in the 80s all week!! Take care and God bless!

Friday, October 24, 2003 12:28 AM CDT

We are still here! I just realized I have not updated for even longer than normal. I'd better say 'Happy October' while the month is still here! For the past couple of weeks Alexis has done amazingly well. She has not been throwing up, she has been drinking plenty, being happier and playing with us a lot more. She especially likes men, men with deep voices she can hear. She likes to cuddle and snuggle men much more than women. Papa and Daddy love this; Mom and Nana aren't too thrilled. She does let us all hold her a lot more, in fact she cries and throws a little red-headed fit quite often if we don't pick her up. Her new hearing aids are really working well, but she is not being as cooperative with wearing them as she was with her other ones. These are quite a bit bigger and heavier, so she is going to take a little longer to get used to them, I guess. She is actually letting her therapists do things with her. She doesn't scream at them the whole time they are here, just when she is made to do something she doesn't think is neccessary at that time. Imagine that. A three year old throwing a fit because they don't want to cooperate. We have not gotten any food to go down yet, but she is keeping her pediasure down well. We go back for a checkup on the 28th, Tuesday, and hopefully she will be good for them. It would be a first in a long time if she is! Not much else going on, just trying to keep up with all the school 'stuff' with the boys. Hope you all have a fun and safe halloween!

Saturday, October 4, 2003 12:31 AM CDT

Happy Fall, Ya'll!! Not much has changed here, still good days and pukey days! One big blessing is that Alexis' gait trainer is finally here! I picked it up in Birmingham yesterday. Alexis doesn't seem to mind being in it, but she doesn't know what it is for so she gets bored after about 10 or 15 minutes. The physical therapist said earlier this week that she will really be able to work with her when she gets it, so I'm sure Alexis will learn soon just what the thing is for. We are actually having a pretty quiet weekend and we are enjoying it very much! Just wanted to let you all know that we are ok and hope you are doing well!

Thursday, September 25, 2003 2:00 PM CDT

Almost a week has gone by again since I last updated! What a week it has been. I thought we were having a 'nothing planned' weekend last weekend - that's what I get for thinking. Friday night we went to the county fair - we have never missed a visit to the fair. Cullman has a wonderful, old-fashioned, everybody comes out and rides rides (well, the kids ride) and we go through the exibits and see all the 4-H stuff, visit Blake's uncle's Sullivan Photography booth and have a pretty good family time. Saturday was Benny's (Blake's dad) company picnic, another yearly tradition. Over the weekend Alexis, who stayed with an Aunt for the fair trip, continued to gag and throw up. By Sunday she wasn't even keeping water down - boy does this sound familiar- and from Monday through Wednesday we fed her via feeding pump day and night. Finally we figured out that she quit throwing up last time while she was on the Carafate (gi med) and started about a week after she quit (she was only on it for 7 days). So yesterday I called the GI doc and got them to call her in an Rx for it, and after getting it last night and today Alexis has kept down all her formula she has gotten today! Poor little girl, hopefully we can figure out how to take care of her better without her having to go through the whole shibang again and again. Therapies are going ok, she still has a fit but she is starting to have a little less of a fit!!
Word is that the gait trainer (walker) has been ordered and should be here by at least next week! That will be a whole new experience, but I think Alexis will enjoy being able to get around once she gets over being mad about being in it! This weekend is "Frontier Days" at Eva, one of the towns we live near. There will be craft booths, a parade (Adam is riding on a fire truck, Isaac wanted to stand and watch so he could catch candy they throw!), there will also be a frog hopping contest, Isaac is planning on catching a toad from the pond and winning it all. Sunday we will be in Pelham and participating the the Pediatric Brain Tumor Foundation's Ride for Kids. The boys will be riding on motorcyles and they are all excited. Isaac is going to ride in a side car and Adam is hoping he can ride on the backseat. This is a major fund raiser for brain tumor research. Alexis' doctor and UAB got a very nice research grant from this foundation last summer. Alexis, Blake and I decided we didn't need to ride, we would just participate in the ceremony afterwards. I'm sure the boys will have a great time. They are really looking forward to it. That seems to be all that's going on here at the moment. Blake continues to heal after his jaw surgery, he is able to eat fish now, still no steak or chicken (his two main meats). We are getting inventive with our menus. Have a great weekend and enjoy fall!

Friday, September 19, 2003 2:31 PM CDT

What a week this has been! Thank goodness it's Friday for sure! Monday was as normal as it gets around here, Tuesday the boys were out of school and a friend of mine had some throw pillows that needed to be made and I volunteered so she (Susan) and another friend Tamra came with their 2 girls to help take care of Alexis and visit, then Isaac has a friend who they have been begging to come over so we invited him (the more the merrier and it was a great day outside!). Not to be outdone, since Isaac had a friend over Adam had to also. Big fun at the Lindsey house!! Actually, it really was great. The kids played better than expected together, no one got hurt or maimed, and the pillows look great!! Alexis' physical and occupational therapists also came and Alexis was terrible for them. She was nothing but mad and threw such a fit that the other kids came in from outside to see what we were doing to her. One of her problems is that she is very 'sensually defensive', in otherwords very 'don't touch me' most of the time, especially with anyone trying to make her do something that's not her idea. We are starting a new therapy on her to hopefully help in that area. We are brushing her every 2 hours with a special brush and this will release endorphins in her brain to help make her less defensive. I have heard of and seen this done before, and it is supposed to really help with all sorts of problem areas. I'll let you know. Alexis tolerates is better than expected except on her back. She hates to be held or messed with on her back, but I am getting a few strokes in each time. Wednesday we (Blake and I) went to Birmingham to HeathSouth and he had his jaw (both) surgery. It went well as expected, he was sick most of the evening and into the night but is ok now except that he can't eat anything that is not mashed potatoe consistancy or liquid for a week. It will be a couple of months or longer until he will be able to eat steak again. Guess what we had Tuesday night?! Yup, steak. He stayed home Thursday but is back at work today. Thursday Alexis and I went to Birmingham to have her hearing test done. They sedated her and did a test to tell the hearing loss, I think I've mentioned it before. Anyway, her hearing loss in her left ear is severe and her right ear is moderate to severe. I don't know when we will go back to Huntsville to get the hearing aids re-adjusted but I'm sure it will be soon. She is wearing the hearing aids again today since they said her ears are clear of infection. We are finishing up the antibiotic which is, of course, giving her the poops. Hopefully we will have a fairly calm weekend, pretty much anything will seem calm now! Alexis is hollering so I need to go...

Monday, September 15, 2003 1:22 PM CDT

Yikes! I knew my ol' mind was slipping, but didn't realize quite how much until I had to log on to Alexis' website to see just when I had updated last! I see that since then she has been to her pediatrician - it is crazy when you are excited that your child 'just' has to go to her 'regular' doctor because of cold symptoms. Poor Alexis didn't sleep much Thursday night at all. She couldn't get comfortable, couldn't breath well, and coughed all night long. Friday morning we went to her doctor and she has, of all things, ear infections. They just put her on a regular antibiotic, although Extra Strength (I never knew they made ES antibiotics, but trust Alexis to help me learn something new again!). She is also getting Tylenol Plus Cold for the symptoms. She seems to be doing well, and we are very thankful for the ol' G tube so we don't have to try to wrastle that yucky medicine down her throat! Her GI problems are non-existant (at the moment). She has started drinking more formula during the day again as well as plenty of water. She is still getting an overnight drip, but not much. She acts like she is feeling better too. At the moment no one at the house except Alexis has any type of cold, flu, or ache. Blake has jaw surgery on Wednesday, so I will have another baby to take care of mid week. Hopefully it won't take him too terribly long to recover, although he won't be able to each much of anything for a week or two at least. This is 'fair week' in Cullman so the boys are out of school Tuesday - can you believe they get a day out of school for the fair?! They don't care why they are out, they just like the idea of no school (and we won't even attempt to go near the fairgrounds on Tuesday!)
So happy fair week, ya'll! Hope the weather is as beautiful where you are as it is here. Starting to cool off a little bit and seem like fall.

Wednesday, September 10, 2003 9:59 AM CDT

Good morning, all! It is nice to be at home again during the day. It seems like we have just run around like the headless chicken for weeks now! Yesterday was, as I feared, an all day hospital visit. Alexis did well though and didn't fuss too much. Her MRI looks good from the initial viewing, Dr. Reddy said that the radiologists seem to think that the enhancement, which is still 'glowing' doesn't seem to be quite as much. As usual, they had a hard time with the spinal tap. Evidentally Miss Alexis doesn't like the thought of giving up any spinal fluid. They did get a small, though bloody sample. I haven't found out anything from that yet, though from what I think I have noticed with children in the past, if she had cancer cells in her fluid she would not be doing well, and she is doing well. She seems to be holding her formula down better since the GI visit, we are just being careful to ration the portions of each cup. Seems to be an overfilling of the tummy now if she loses it - which she did in fine style for Dr. Reddy in the office yesterday. It didn't take too long after that for them to get us out of there!! I have been asked by several people lately about Alexis' status. She is not in remission, she is not considered 'no evidence of disease' but she is considered 'no change' which is good right now. This type of cancer is so aggressive that they have to keep an eye on the patients for return at any time. Alexis does seem to be doing well and she is making progress in her motor skills, etc. We are thrilled with her progress and do not expect a recurrence of her cancer, but they will not say she is 'cured' at this time. I don't want to discourage anyone, but like I said several people have asked about it so I thought I'd let you know what they tell us. We enjoy each day and have faith that Alexis will continue to do well and improve with each passing day. God is good and He IS in controle!! I will let you know the 'official' good news about her spinal tap results when I find them out. Have a great day and remember to be thankful for our great country, especially tomorrow, September 11th. God bless.

Monday, September 8, 2003 12:48 AM CDT

Wow, it's already been a whole week! I did my last update on Labor Day at my sister-in-laws house - went straight there from the hospital to celebrate the holiday and her daughter's birthday. Not an hour after I updated my son (Isaac, the redhead) came in crying that he had gotten some mud in his eye. My reaction was, well, we'll rinse it out and he will be on his happy way again. We ended up in the local ER because he had caked his eye full of mud when he was riding his bike through a newly-formed 'big 'ol' mudhole. He and his cousin had taken great care in digging a hole and filling it full of water, then they decided to ride a bike through it so everyone could see just how high they could sling the mud. I don't know how Isaac managed to not get his eye closed in time, but by the time they got into the house they had already jumped into the swimming pool and washed the majority of the mud out, and Blake ended up getting both ends of 2 q-tips full of mud out of the corner of his eye after they rinsed it out in the house. At the ER they found that Isaac did have a cornial abrassion, but there wasn't much they could do except put some numbing drops in it and give us some saline to keep the eye moist. They said it should heal in about 24 hours and I thought 'yeah, right'. By the time he got home from school the next day the eye was just barely bloodshot and by that night you would never know it happened. Amazing, they really do know what they are talking about!!
Alexis did great Monday, then right before bed Monday night she started throwing up again. Go figure. She threw up quite a bit Tuesday and we went for her GI appointment on Wednesday. At that time she was looking good and keeping her water and some formula down. The GI doctor increased the frequency of her 2 GI meds and added another one for 7 days to help take care of any irritaion she may have. Thursday she once again looked bad and didn't keep much down, then all weekend she has done well. Who knows what the day may bring?! Thursday we went to the hearing clinic in Huntsville and got her hearing aids re-adjusted and she is doing fine with them. She keeps them in fine until she lays down and gets them jiggled out of place and makes them beep, then they are across the room! They turned down the low frequency and kept the high frequency up because they found that the chemo she got normally messes up just the high frequency. After her MRI tomorrow they will schedule a time for her to go get the other "high-tech" hearing test done so they can get an accurate test on her hearing. Yes, tomorrow is the MRI and spinal tap day. We have to be there at 8am so they can do labs and such on her - her actual MRI is scheduled for 10. It will be another long day, but we are used to those these days!! I will let you know how the MRI etc goes as soon as I can. Have a good one.

Monday, September 1, 2003 4:21 PM CDT

Home sweet home, well almost! We got to leave the hospital around noon and we are at Alexis' Aunt Jody's house celebrating Labor Day and a cousin's birthday. Alexis decided to show those doctors - if they wanted her sodium lower, by golly she'd lower it! Yesterday it went down to 140 and they stopped all her IV fluids (extra fluid makes your sodium drop) and then it just kept on going. At 6pm it was 136 and then at 11pm it was 131 and they were worried about it getting too low! This morning it was back up to 134 and then they checked it again at 11 before they would let us go home and it was 136, they were happy, we were happy, we left. Alexis is back to drinking and keeping her formula and water down, no gags or throwing up, and she is acting like she is feeling fine. I don't know if she will have to go to see the GI doctor Wednesday since she is doing better, I'll find that out tomorrow. Thursday we are going to Huntsville to get the hearing aids re-adjusted and next Tuesday (the 9th, don't forget to vote!) is her next MRI and spinal tap. Hopefully all will be uneventful until then! Have a great Labor Day!

Sunday, August 31, 2003 4:44 PM CDT

Welcome to the last day of August! We are celebrating the end of August by 'visiting' the wonderful nurses (and we cant't forget Dr. Berkow, her self-proclaimed favorite) here on 4 Tower at Children's Hospital. We came in on Friday evening and hopefully we will go home tomorrow. Alexis had her sodium checked at the hospital at home Friday morning (it was high when we were at clinic Wednesday) and it was 156. For those of you who are not 'up' on your sodium knowledge, that's not good. They started fluids on Alexis and finally yesterday it dropped to 146, only to go back up into the 150s again last night. This afternoon it got down to 140 (this is acceptable) and she is drinking both water and her pediasure without throwing up, so it looks like we will be able to go home tomorrow, but with her we always hold our breath until we are actually in the van pulling out of the parking deck! Even though we have been here Alexis has acted like she feels good. Yesterday when her brothers came in and got up in the bed with her to visit they got her laughing quite a bit. The nurses have really enjoyed playing with her and hearing her 'talking' at all hours. They have enjoyed it until they try to get her blood pressure or temperature, then they are not her friends anymore. Congratulations Courtney, the only nurse in months who has managed to get a blood pressure - we won't mention that she was sound asleep! We are in room 440, but hopefully by the time you are reading this we will be on our way home!! We get to come back up on Wednesday for her appointment with the GI doctor and then again Tuesday the 9th for her MRI, but hopefully we have visited in patient for our last time in quite a while! Sorry I didn't update sooner, it's hard to get on a computer up here at the hospital! You would think they used them a lot or something... Happy September!

Sunday, August 31, 2003 4:44 PM CDT

Welcome to the last day of August! We are celebrating the end of August by 'visiting' the wonderful nurses (and we cant't forget Dr. Berkow, her self-proclaimed favorite) here on 4 Tower at Children's Hospital. We came in on Friday evening and hopefully we will go home tomorrow. Alexis had her sodium checked at the hospital at home Friday morning (it was high when we were at clinic Wednesday) and it was 156. For those of you who are not 'up' on your sodium knowledge, that's not good. They started fluids on Alexis and finally yesterday it dropped to 146, only to go back up into the 150s again last night. This afternoon it got down to 140 (this is acceptable) and she is drinking both water and her pediasure without throwing up, so it looks like we will be able to go home tomorrow, but with her we always hold our breath until we are actually in the van pulling out of the parking deck! Even though we have been here Alexis has acted like she feels good. Yesterday when her brothers came in and got up in the bed with her to visit they got her laughing quite a bit. The nurses have really enjoyed playing with her and hearing her 'talking' at all hours. They have enjoyed it until they try to get her blood pressure or temperature, then they are not her friends anymore. Congratulations Courtney, the only nurse in months who has managed to get a blood pressure - we won't mention that she was sound asleep! We are in room 440, but hopefully by the time you are reading this we will be on our way home!! We get to come back up on Wednesday for her appointment with the GI doctor and then again Tuesday the 9th for her MRI, but hopefully we have visited in patient for our last time in quite a while! Sorry I didn't update sooner, it's hard to get on a computer up here at the hospital! You would think they used them a lot or something... Happy September!

Thursday, August 28, 2003 1:17 PM CDT

Good day, all. This has indeed been another one of 'those' weeks. Last week after the hearing aid episode Alexis just went downhill. We ended up just taking the hearing aids off and will wait until next Thursday when we go back to Huntsville to get them readjusted - I think they are set too loud and she can't stand the 'screaming' in her ears when we talk to her. Last weekend she also started spitting everything up that she would drink. On Sunday she couldn't even keep her water down, not to mention her formula. Monday we spent at home on the pump getting her formula slowly dripped in her g tube. Monday night she gagged all night long, and Tuesday I called Children's because I was at my wits end (didn't have to go very far there!!) with what to do for her. We went to the clinic yesterday and after seeing the Dr.,nutritionist, an occupational therapist, consulting with the endriconologist and a GI doctor and getting a CT scan to rule out shunt problems, getting 2 hours of IV fluid to give her some extra 'juice' (she was a little dehydrated) we got to go home. They changed her GI medications, the Reglan she is on can evidentally cause vommitting if too large a dose is given so they halfed her dose of that and doubled her dose of Zantac to help the acid problem. Evidentally this is a REALLY wicked case of acid reflux and they are going to try to figure her out - good luck there! Alexis is on Pedialite until this evening and then we will slowly try to get her to keep her Pediasure down. She has an appointment to see the GI doctor at childrens next Wednesday - yet another clinic and another doctor to add to her list! We are also going to start going to the feeding clinic at Children's in Birmingham. I haven't talked to them yet - they probably have been trying to call while I've been on the computer!! This morning Alexis acts like she is feeling much better and is once again scooting around and jibber jabbering. Sounds good! Hope you all have a great weekend and a save Labor Day weekend!!

Monday, August 18, 2003 10:12 AM CDT

Happy Monday! I got on this crazy computer again today and just downloaded the other 2 pictures that I had tried to get on the website last week. I know they are big and one of them is sideways, but that's the only way I can make them work. I 'fixed' them the other day and when I tried to download the new photos they wouldn't download. Yes, I am the ultimate computer dummy. Alexis had a great weekend. She is feeling fine and showing it. She said hi to her daddy and papa both (Hey Da! Hey Papa!) which made their day. She is laughing and playing quite a bit now too. Tomorrow she gets to start her new physical and occupational therapies and Wednesday we go to Huntsville for hearing and feeding clinics again. Hope you all have a great week!

Friday, August 15, 2003 11:37 AM CDT

Hope everyone is well and happy! Isn't the first week of school just grand?! The boys seem to be enjoying their classrooms, teachers and classmates - neither one of them have anyone new in their classrooms, a few have left both classes, and of course they have new teachers but they have known them ever since Kindergarten - that's one more good thing about them going to a private school, not too many changes each year. Tuesday was a little hard on me since Alexis should have started pre school with the wonderful Mrs. Tucker this year, but I am thankful Alexis is still here and making progress each day. I finally put new pictures in the photo album - one is of her birthday, the boys made the butterflies for her cake. When I 'fixed' the pictures before I downloaded them on this website I think the color got messed up. I'm learning!! I haven't looked at them yet so I'm not sure how they look.
Alexis went Wednesday and got ear impressions made for hearing aids. I think we will get them when we go for feeding clinic next week. They will have them done and ready for her to 'get used to' so hopefully they will be a 'non-isssue' when they get the test done that they want to do and the aids adjusted properly for her hearing. She wasn't too thrilled with the process, to say the least but she finally wore herself out about half way through and fell asleep. Next week will be busy too. Tuesday she starts her new physical and occupational therapies and Wednesday we go back to Huntsville to the feeding clinic. We still haven't heard any news on the gait trainer. I am beginning to think it is a figment of my imagination!! Hopefully when the new physical therapist gets on board she will be able to get something going there. Time to go already! I have to run and pick up a tuxedo before picking up the boys from school - Adam is in a wedding tomorrow, and he looks so cute in his little tux!! Have a great weekend!!

Saturday, August 9, 2003 2:31 PM CDT

Wow, life sure gets busy! Sorry it's been a while since the last update, but I'm sure no one is shocked by now. On the last weekend of July/first of August Blake, the boys and I went with a group of friends from church to Panama City, FL and spent a great long weekend on the beach. Alexis stayed with her Aunt Jody and Nana while we were gone. It is such a blessing to have family that will help take a load off every once in a while. We all needed a little break, and came home the better for it, although a lot redder than we left! We have hit August on the run and it doesn't look like we will stop for a while. The boys start school Monday. I think they are both looking forward to it, although Isaac (2nd grade) doesn't like to admit it. Adam (4th) will have a man teacher for the first time and he is excited. He always looks forward to school. Alexis will start therapy with her new therapists on the 19th, we are looking forward to that. Hopefully by next week her gait trainer (walker) will come in and we can get fairly comfortable in that by the time therapy starts back. We go to Huntsville on Wednesday to get ear impressions made for Alexis so they can fit her with hearing aids. She can her at conversational distances, but not from across the room. She will be getting a special hearing test done shortly to determine the exact amount of hearing loss so she can get some help in that area also. Hopefully that will make her more confident of herself and ready to be a little more eager to get around. She is still to drinking, scooting around and even starting to pull up on things. She can climb up onto a chair or the couch when we encourage it, but doesn't just try it on her own yet. We see small improvements all the time and are thankful for them. She had her monthly Dr. visit this past Wednesday and all went fine, except that she was very vocal about not wanting to get her blood pressure taken (they never did get it!) and she wasn't too thrilled about them wanting to get her blood. She finally fell asleep in the middle of the great attempt to get the blood. Only took 4 adults. I'm sure the lab shudders when they see her name! Our next appointment is September 9th and that is to have an MRI and spinal tap. This month we will also be going back to the feeding clinic, and I'm sure they will be thrilled to see her drinking! Hope you all are getting ready for school, like it or not!! Thank you for your continued prayers, we sure need them!

Monday, July 28, 2003 10:50 PM CDT

HAPPY 3RD BIRTHDAY TO ALEXIS!!!!!!!!!!!!!!!

Yes, today was the big day. Alexis didn't care, she had her sippy cup and her floor to lay on and she was a happy camper, 3 or not. We had a wonderful family dinner and cake this evening. Much better, not to mention less stressful, than her second birthday. Looking back to last year I am so thankful to Dr. Berkow who came in that morning with 2 residents, a huge birthday card and a tigger and sang happy birthday to Alexis in PICU. She had just come out of a terrible week and wasn't doing the best even that day, but it meant so much to have doctors and nurses who care. What a difference a year makes!!
Alexis is still drinking well, starting to pace herself better on how much she can handle - when she first started drinking she wanted to drink all the time and would drink so much that she would end up throwing it all up. She would also get her mouth so full that she would lose half of it when she took her cup away from her mouth. I was having to make her take small sips and then take the cup away, but now she is controling the sips on her own and we just have to be ready to catch that cup when she slings it! She is taking enough now during the day that she is off the drip feeds at night. I thought that would help her sleep through the night better, but since she's been off she has been on her days and nights flipped schedule. oh well. Since she is drinking and swallowing she has been going to the bathroom much better - don't get to excited, not literally going TO the bathroom, but...! Someone told me that when you swallow it stimulates the rest of your body to do it's thing. enough 'potty talk'!
Since Alexis is now 3 all of her therapy services have changed. Now instead of being with Early Intervention she is with the county school services. I have met and am very impressed with her new therapists, but they won't start until mid August when the school year starts. They will be coming to the house for a while and working with Alexis, she won't be going into the school setting. Her walker - technically called a gait trainer- has been ordered and hopefully she will be getting it in the next couple of weeks. Then after she gets over being mad at us for making her get up she can be more mobile and start exploring even more of her world.
Well, the rest of the family is asleep and I need to be too. No telling when Alexis is goig to decide it's morning time for us. Last night it was a little before midnight!!

Thursday, July 17, 2003 10:52 AM CDT

NEWS FLASH!!!!! Wow, this is a good one too!! Tuesday evening at the church softball game Alexis got hot and cranky and I was trying to calm her down and stuck a cold cup of Sprite to her mouth, and she went to town! She drank quite a bit of it, tried to gag some but never threw up and when we got home and got her a sippy cup she even held it by herself, although she wanted us to hold it for her. Yesterday I tried again, still using Sprite (actually Sierra Mist, Pepsi version of Sprite) since that was what she started with and she kept it up. She even started holding it by herself more. Then she started sipping and spitting it out, so I decided she had had enough. This morning she was still drinking well and it was time to feed her so... yup, I tried the Pediasure in the sippy cup and she drank it down, refusing to let me help with the cup at all. She gagged a little afterwards but never threw any of it up. Yippee! Hopefully she will keep taking all her daytime feedings from a cup, then we can work on getting her to drink enough so that she can come off her overnight drip feeding. I am going to let her just drink for a while before I start getting too aggressive on the solid foods. I sure don't want to discourage her now that she's come this far. Everyone else is doing fine, the boys are going to go to Smith Lake with Blake's dad on his pontoon boat this afternoon after Isaac goes to his yearly dermatologist check up, speaking of which I have to take him now! Later!!

Wednesday, July 9, 2003 4:52 PM CDT

Just a quick note to let you know that all is well in Lexi Land. We had a nice quick visit as far as Clinic visits go - we were only there for 2 hours! We got home and Alexis was thrilled to get on the floor and scoot around. She found her way to the kitchen today and loved the tile floor. Thankfully I had just mopped, so she didn't get nasty!! Her checkup went fine and we don't have to go back for another month. Her next MRI is for sure scheduled on September 9th. The boys went to work with their Daddy and came home looking like dirt piles. They didn't manage to clog up the shower drain though. Gotta go fix supper! Enjoy the wonderful summertime!!

Sunday, July 6, 2003 4:07 PM CDT

Life may be crazy, but it is never dull, is it?! If yours is, you are more than welcome to spend a few days at the Lindsey house and you will be thankful for the calm!
Alexis continues to do her own thing. I am able to feed her again, but she insists on gagging and spitting up a little at each feeding - unless she is asleep. She has decided to become much more mobile too. She crawls around quite a bit, and refuses to lay on her mat. She has a wonderful mat on the floor of the living room for her to lie down and take a nap on but no, she would much rather crawl onto the hardwood floor and lie there. Her current favorite nap place is to crawl into the next room and slide herself all the way under a chair to sleep. It really bothered me at first to see her lying on the floor, but hey, it that's where she likes to be and she is crawling to get there more power to her. We still don't have her walker and I'm not totally convinced the thing has even been ordered yet, but I'm not going to even go there!*(^%&
We had a great 4th of July long weekend. My Dad, sister, her 2 children and a friend came on Thursday afternoon, we spent the day of the 4th at Blake's aunt and uncles, and my family stayed until Sunday morning - they left my 13 year old nephew behind to entertain the boys for a couple of weeks, so we are still having fun. It won't be long until we get to have a big ol' 3 year old's birthday party!! Alexis will the 3 on the 28th of this month already. Hard to believe!
We go to the Dr. for Alexis' next checkup on Wednesday and I think it will once again end up being an all day thing - in addition to her 'regular' checkup Dr. Blount wants to see her, the endriconologist (hormone Dr) wants a peek and I am sure considering her eating fiascos the surgeon who put in the g- tube will also want to check her out. I also heard that it is possible that we may end up going and getting yet another hearing test Wednesday too. I'll let you know how we make it probably Thursday. Have a great week!

Thursday, July 3, 2003 9:52 AM CDT

Well, well, the Upper GI was done, and would you believe little miss Alexis just laid there and let them fill her up with Barium, gagged a couple of times but didn't throw up a thing?! Her fundo is still in place, everything there looks like it should. We went home and at her 4:00 feeding she was sound asleep, never even coughed when we fed her. But at her 8pm feeding she was awake -- and nothing stayed down. We have come to the conclusion that she has just learned to throw up over her fundo and is doing it just because she can, she doesn't like having anything in her belly, whatever the reason, she is doing it. She keeps everything down when she is asleep, but if she is awake don't even bother. The only thing we can do is drip her feeds like we do overnight. At the moment I am trying that during the day for a few hours at a time, but while that is going in she still gags trying to get it up, which she can't because there is never enough in her belly at one time for her to get rid of. Any suggestions are welcome.(!)
Besides that she is doing great, she stayed awake all day long yesterday and talked her little head off - if we could only know what she is saying!! She is on track to do the same thing today. My dad, sister neice and nephew are on their way here from South Carolina for the weekend. My nephew, Ryan will stay with us for a couple of weeks. I need to finish cleaning the house instead of typing this, but I wanted to let ya'll know how the test went Monday. Feeding clinic will be a good thing. Yesterday was the meet, evalutate, etc day and they gave me a lot of good ideas to help her get used to the smell of food - I never thought of that. They also did another hearing test on her and we should be getting some hearing aids soon for her. She can hear if you are near her, but high pitch and far away hearing was hurt by the chemotherapy that she got. Hopefully that will not be drug out too much and they can get something that she will actually leave alone and wear. That's all for now, folks! Later!

Monday, June 30, 2003 2:01 PM CDT

Home again! The camping trip went fine - no rain until the night before we were planning on leaving. It seems like we always end up packing up in the rain on camping trips. I was actually thankful for the rain because Blake couldn't work so I didn't have to try to get the camper put up by myself. After we got the van packed up with all the wet smelly stuff along with 2 of the 3 kids the crazy thing wouldn't start. Battery went bad. So I got to make a fun stop at Wal Mart Jiffy Lube to get a new battery installed. Thanks to Alexis and her bad mood we got 'worked in' fairly quickly and were only there about an hour or so.
Alexis is pulling a new trick on us. She is throwing up every time she gets fed during the day. (You will remember she had surgery to prevent this) We are going to go tomorrow and have an upper GI done. They said her fundopication has probably slipped and if it has she has a hernia. ouch. I don't know what plans they will have when they find out exactly what is wrong, but I'm sure it will involve another hospital stay. oh joy. We are also scheduled to go to Huntsville on Wednesday to begin visits to the feeding clinic at the Children's Rehab Services clinic. I talked to the nutritionist/OT there and they still want to see her if at all possible. Then on Thursday my family is coming in from SC to see us. They will be here through the weekend, so we are looking forward to a good visit.
The boys are doing fine and enjoying their summertime as boys should, seeing how much dirt they can transfer from outside to inside on their clothes (it is amazing how much gets in those pockets!) Blake is staying busier than busy, which is good but we sure would like to see him more!
Hope everyone has a good week and has plans to enjoy the 4th!

Saturday, June 21, 2003 12:19 AM CDT

Just a quick note to say that these happy campers are off! No news updates until this weekend. Have a great first week of summer!!

Happy Summer!! Doesn't it seem strange that right in the middle of summer vacation is the beginning of summer?! We are having a beautiful day here in Alabama. Not that Alexis cares! She is snoozing the day away. I got her up a couple of times, and she's like, why are you waking me up at midnight?! Yes, she was awake and playing again all night last night and the night before. She just goes in cycles with her days and nights. Evidentally she thinks there are more than 24 hours in a day! She is doing well and it is unbelievable how much more active she is the more she recovers from the shunt surgery. You would never know she had anything done to her - except for the gap in the front of her hair!! We went back on Wednesday for Dr. Blount to look at her head, and all is well. On Monday Dr. Reddy's office called and said while we were there Wednesday they wanted to do another spinal tap. So we got to spend the day there instead of just the afternoon. Oh well, better the day than the week!! or the summer again! Anyway, when we got there Dr. Reddy said that the sample Dr. Blount sent when he did the surgery had abnormal cells in it so they were doing a repeat to make sure that is really was clear. Yikes!! On the good side, Alexis really looked good and is much more active, so I don't think they really thought she had relapsed already, they just had to have the spinal fluid to make sure. As usual, they had trouble getting fluid but they finally did - and they didn't have to stick her quite as many times as before. Finally on Thursday afternoon Richard (NP) called to say that the pathology report was negative and she was in the clear. That was a long day. I really didn't think that her spinal fluid would show anything (they said that usually if has gone to the spine the little ones look bad). Needless to say we have been saying many extra thank you prayers in the past couple of days.
We are getting ready to go camping next week. We are going to Smith Lake Park here in Cullman and live in a pop-up camper and bathhouse for a week. It really is more fun than it sounds and it is a way to get away without getting too far away. Blake is too busy right now to be able to get away through the day, but he will be able to join us in the evenings. His dad has a pontoon boat and we will enjoy riding on the lake - Alexis and I missed it all last summer! Blake's mom and dad are going also (yes, they have their own camper!) and hopefully his sister and her family will be able to come for a few days too.
Just wanted to check in and let you all know all is well and getting better each day! Remember to thank God for each day and tell someone you love them!

Wednesday, June 11, 2003 4:45 PM CDT

Did you all hear a big sigh come from the Birmingham area around 1:00 this afternoon?! It was the doctors and nurses at Childrens as we left the hospital as scheduled! I think the staff of the PICU are still in shock that they didn't get a visit. They couldn't believe it yesterday when they saw Alexis on the OR schedule and not on the PICU list! What a difference a few months at home makes! Everything went very well, Alexis is acting like she feels much better. I didn't think she was acting that symptomatic with the shunt, but now that I see her I can tell that she was. She is resting well but when she is awake she is crawling around and 'talking' a lot more. Dr. Blount did a wonderful job with her hair, of course he had to cut some of it but it was very minimal. Words can't describe how wonderful that man is! We just have to go back to visit hime next week so he can check the wound and then in a month for a follow up. It was wonderful to get to see the wonderful nurses and several doctors but it is great to be back home. Thanks for your continued prayers.

Tuesday, June 10, 2003 7:15 PM CDT

This is the day that the Lord has made, let us rejoice and be glad in it! Alexis did fine in her surgery today. We got here at a little before 8:30 and she was admitted no problem. She went to surgery at 11, Dr. Blount came in at 11:45 and said that she did fine, her ventricular shunt was blocked so it was taken out and replaced. All other parts of the shunt were working fine. She was in recovery for about an hour and then we went up to good ol' 4 tower. We even got a nice big room!! Alexis stayed awake until I fed her around 4 and then went to sleep. She has been sleeping pretty much ever since, and that is normal after she gets put to sleep. We are planning on leaving in the morning, I'm sure it will be late morning before we actually get to, but I will let ya'll know when we get home. Thank you so much for all the prayers. I'm sure heaven has been bombarded on her behalf!! Thanks again, later...

Saturday, June 7, 2003 9:28 AM CDT

Alexis is down for 'the night' who cares that she began her nights sleep at 8:30 AM!! She will sleep until around 7 this evening and then be bright eyed and bushy tailed until about 8:30 tomorrow morning. When she is awake she jibber jabbers, sits up and plays and enjoys herself - all by herself for the majority of the night. What to do?!
Yesterday was a year that we have been in the world of meduloblastoma. It is amazing what one can learn in one year without even going to medical school! I am so thankful that we still have Alexis, that she is home, that she is beginning to do things again. I was going to write here yesterday after I got home from taking the boys to meet the bus for camp (which ended up being an hour late, I'm sure Children's appreciated that since all the kids and their parents were camped out in the lobby waiting for it!) and I talked to a couple of nurses and friends. They told me our 'stem cell buddy' Austin was not doing well at all. He has been home, Fairhope AL, that's in the Mobile area, since April, and in the hospital for the past several weeks. Then yesterday evening I got 'the call'. Please keep his mom, Tina, in your prayers. Needless to say, Alexis got a lot of extra hugs and squeezes last night! I have often wondered what God has planned for her. Obviously something big since she has survived and Austin was the last of the little ones left that we met last summer. It was hard not to feel a little guilty when I talked to Tina last night on the phone. I am truly thankful that God has let us keep our little red head!
Well, Alexis has to be at the hospital at 8:30 Tuesday morning, so that means she won't be going to surgery until probably late morning. Dr. Blount has one case ahead of her so as soon as he finishes with that one Alexis will be ready for him to 'fix' her. These doctors are so amazing. (the nurses aren't too shabby either!!) We are so blessed to have such a high quality hospital so close. I probably won't be writing much until Alexis gets out of surgery - we will have a busy next couple of days, going to get the boys from camp and I am trying to 'hitch a ride' with someone going to Mobile on Monday. I'll find a computer at the hospital to let ya'll know all went well Tuesday.

Thursday, June 5, 2003 9:13 AM CDT

Update time! Well, I fully intended to do this yesterday when I got home but... We had an appointment with Alexis' 'regular' pediatrician yesterday morning at 8:30, it was just a yearly checkup that we have to do every year to make insurance happy. That way he can refer us to all the doctors and therapists that we need to see! That was the first time he had seen Alexis since he found the tumors, so I'm sure it wasn't the easiest visit he had yesterday, but he was glad to see her looking so well. I think he was amazed more than anything. After that we went back home and met a therapist, then on to Birmingham. I got there a little bit early hoping that it would speed things up, and boy was I wrong! After we had been in the waiting room for 45 minutes a nurse came out and said that any patients waiting to see Dr. Blount would probably rather go get a snack or whatever because he had to go to the OR and would be another 45 minutes. I am glad they let us know - I was able to go over to our regular clinic and get some prescriptions I needed and then run up to 4 tower and see our nurses there that we hadn't seen in a while. Alexis never knew about the delay - she slept through it all. It's funny how things like that don't even phase me any more. I knew that last year about this same time we were making someone else wait while Dr. Blount took care of Alexis. We are so very thankful that we got him when we got here. He is absolutely wonderful. Anyway, we got right in to see him when we got back to clinic and although he hates to put her through more surgery he needs to check out and fix that shunt. So Tuesday morning she will go to surgery. They are going to call Friday with the time - they have to wait on OR to make the schedule. They are going to try to get her early but... She will stay overnight and we should come home Wednesday. He is doing a shunt exploration/revision since they really don't know right now what the problem is. They will just open her up, try to flush it and see where the problem is. I think that they are thinking it is just plugged up somewhere. Whatever the problem, they will have it fixed when she comes out! Just pray that when they fix it that it won't get infected while they are in there - that is the main concern. If that happens we will have a week or so stay in the hospital while they clear up the infection and then get a new one in. We aren't even going there!
Hope you all are having a great summer and I will sign off for now!

Tuesday, June 3, 2003 10:00 PM CDT

As you can see by the time, it is getting on the late side but I wanted to update real quick and let you all know what is going on. As I mentioned before, Alexis is having some shunt 'malfunction' going on. Yesterday I got to talk to Dr. Blount's nurse and she said that there was a change from the last scan and the 'fluid draining areas' were enlarged but there was no pressure to the brain anywhere. I have an appointment for Dr. Blount to see Alexis tomorrow (Wednesday) at 1:45 and we will discuss when he wants to go in and do a shunt revision. Hopefully it will be something simple, if you can call having to go back into that pretty little head simple, and we will not be in hospital very long for it. I am hoping they go ahead and do it sooner than later so it won't become a problem. Of course, now that I know the shunt is not acting quite right every time she does something different or sleeps extra or stays awake extra I wonder if it is a sign that something is wrong. I just have to keep reminding myself that God is in controle here still and I need to quit worrying so much. That 'one year' mark (I don't even want to call it an anniversary) is just a couple of days away, and I really didn't plan on spending it planning another surgery!!
The boys are getting ready to go to a weekend camp at camp Smile-A-Mile. It is a sibling camp - all the kids there will be siblings of a cancer patient, so I hope they will meet some new friends. From what I hear they will have a blast and be upset that it is only for the weekend. We will go pick them up on Sunday morning.
Well, I am going to call it a night and I will make sure to let you know what we find out tomorrow. Until then.....

Saturday, May 31, 2003 6:53 PM CDT

Hi! Just a quick Bible bowl update -- well, there's always next year!! The lady who won was the winner 2 years ago and the lady who won second place won second place last year also! Blake said that next year he was going to make sure I answered the qualifying question so I could deal with all the stress up on stage!
As for an Alexis update, she is still doing well, but I think I mentioned that on her MRI her ventricals were enlarged from her last scan. I have gotten word that Dr. Blount has said that the shunt is definitely malfunctioned and he will have to fix it, but since I have been playing phone tag with the hospital while I was getting the boys out of school, etc I have not been able to talk to any of the doctors personally to set anything up. I for sure will get in touch with someone on Monday so I will have more to pass on then. At least Alexis is still active, although she is sleeping a little more than usual because of the problem. When she is awake she is still playing and 'talking' in her own little language. Have a great weekend and beginning of summer!

Wednesday, May 28, 2003 4:03 PM CDT

Good day to everyone! Whew! We have made it through another day!! Today Isaac's class, first grade, all twenty of them, came to our house for their end of the year party. They had a ball and it was good to be able to do such as that again. Thank goodness it didn't rain! Tomorrow and Friday the boys have a half day and then they are out for the summer! They have made big plans.
Yesterday Alexis and I spent the day at Children's hospital. She got an MRI first thing and they attempted to do a lumbar puncture but couldn't get any spinal fluid. The MRI is unchanged from last time (!!!) Her ventricals do look a little enlarged, which means her shunt is "not working at it's optimum level" but since she is not showing any signs of a 'bad' shunt they did not keep us to do any further studies. Dr. Reddy is going to talk to Dr. Blount about the scans and see what he wants to do. She said it may just be a little plugged up, they may just wait and see. They were happy with the MRI results overall anyway. Alexis is doing fine. She is sitting up on her own from lying down and she is getting more active. She is finally sleeping through the night again, hopefully she will keep it up. I will update more as time permits - meaning you may not hear from me for a couple of days. Saturday is the Bible Bowl, and I will be so glad when it is over. This getting questions and answers every single hour got old a long time ago!! It will be worth it if Blake wins the thing, I think...

Friday, May 16, 2003 1:16 PM CDT

Hi ya'll! We do hope everyone is having a wonderful week. I have updated Alexis' photo album, I got some great pictures of my wonderful little ones on Mother's Day. They are taken in our yard. Blake has obviously done a wonderful job with our landscaping, I can take no credit for it at all! Can you believe how much hair Alexis has now?! She is doing so well. I am so thankful! Her next 'big' thing is on the 27th, just a little over a week away she will have her next MRI done and we will have a clinic visit. We hope you all are not floating away - we just about are here in Alabama! rain rain rain In between showers Alexis really likes to go outside. We have been putting our front porch swing to work! Have a great weekend.

Friday, May 16, 2003 12:53 AM CDT

As you can see, I added a beautiful picture of Alexis to her page, now I just have to figure out how to resize it so her page isn't impossible to read! We also have new pictures in the photo album finally. Most of the pictures were taken the weekend of Mother's Day. Alexis continues to do well. Her next 'big' thing is her 3 month MRI on Tuesday the 27th of May. Right now she is enjoying her nap mat in the living room floor! Hope you all are doing great. We think of our friends often, even if we don't see you or talk to you very much any more!! God bless!

Sunday, May 11, 2003 6:41 PM CDT

HAPPY MOTHERS DAY!!!
I am so grateful that I still have my 3 precious children with me today. It was wonderful yesterday to be able to go to the mother-daughter banquet at church and to be able to go to the most wonderful church in the world this morning. I am truly blessed, and I am truly grateful.
The month of May is quickly marching on, and it just keeps getting busier! I can't believe the boys are already almost out of school! I look forward to a busy but enjoyable summer this year - at home!!!
I want to thank everyone who sends notes of encouragement to us, it really makes my day to read the guestbook and know you all care about us. Alexis will start walking and talking soon, Isaac is over his 'homebound' stage of his surgery and will go back to school tomorrow, Adam starts his second season of ball with a game tomorrow night and Blake is so busy he hardly has time to study for the coming Bible Bowl. We have all the questions on flash cards and he goes over them at night and during breaks ... He's pretty impressive with his knowledge!
Hope you all have had a wonderful holiday and are now refreshed and ready to get back to the ol' grindstone!

Wednesday, May 7, 2003 10:30 AM CDT

Good day,ya'll! Despite the bad weather we are having in Alabama we are enjoying each day. Monday the boys got out of school at noon due to tornado warnings, typical AL spring weather. Isaac got through his surgery yesterday fine and we were home by a little after noon. He is hurting now when he tries to swallow, but sat in his daddy's office and played with his tractors while Blake did some work up there. We have enjoyed having Blake home this week - there are some good things about rain and tornados! We are thankful that there has been no damage in our area, just lots of water and wind! Right now Alexis is taking a nap with her daddy. She continues to do well. We haven't gotten her to eat anything yet, but it will come in time. Her occupational and speech therapists are both supposed to make visits on Monday, so maybe we can get going on that. I will update the pictures in the next couple of days. We got to go outside last week before the weather got yucky and I got some pictures then.
Please pray for my stem-cell buddy Tina and her son Austin. He has relapsed with lukemia and they are having to decide their next course of action.
Have a wonderful day!!

Wednesday, April 30, 2003 4:26 PM CDT

Hi to all! Just a quick update to say that Alexis continues to improve daily. This morning she was in a wonderful mood. She jibber jabbered (I just wish I knew what she was so talkative about!) and smiled and played with friends and brothers. She is really enjoying her daddy too. She has been awake and sitting up playing most of the day. Right now she is taking a little snooze before church time. We hope you all are doing well and continue to pray for all of our 'hospital friends'. Did you all hear about Alabama's earthquake?! I never thought I would have the 'opportunity' to experience one of those!! We are gearing up for Isaac's tonsil and adnoid surgery Tuesday morning. That, hopefully, is the most excitement we will have next week. God Bless!!

Thursday, April 24, 2003 8:59 PM CDT

We went to Children's yesterday for a checkup, g-tube change, and a swallow study and had a good day, but came home very tired! The G-tube change was just a 8 week post-op check up to make sure everything healed ok and there was no problems with her feeding, etc. Everything is fine in that category. Alexis is tolerating her feeds fine and doing wonderfully with her tube. From there we went and got blood drawn for labs, and Alexis let us know she did not appreciate that at all. Then we visited stem cell for a few minutes before heading off to the radiology outpatient for Alexis' swallow study. More good news. She is swallowing without aspirating at all! She did gag a lot and they were concerned about reflux (she really wasn't gagging that bad compared to what she has done in the past, but the doctor and occupational therapist that did the study had never seen her before, so it looked bad to them). Anyway, the nutritionist called me today after talking to OT and the surgeon's nurse about it and said that she is off all restrictions. She is gagging mainly because she has a really good (or bad?!) gag and as soon as something gets put in her mouth she thinks it doesn't belong there, so she tries to get rid of it! This feeding thing is definitely going to be interesting!! After the swallow study it was back down to clinic 5 to see Dr. Reddy. Alexis' labs looked wonderful, beyond wonderful actually. Everything that is supposed to be up is up and everything that is supposed to be down is down and they couldn't be happier with her progress ... actually they can't believe her progress! They were tickled to see that red hair getting thick and that attitude coming back full force. After that we went up to 4 Tower to visit her nurses and a couple of friends who were up there. Keep little Gracie in your prayers. She is starting her 5th and last round of 'regular' chemo and will be going up to stem cell in a couple of months. Please really pray for a little boy named Zach. It was good to see all our 'hospital friends' as an outpatient!! Right now Alexis has her days and nights mixed up big time. She has slept pretty much this entire day, and I have tried all day to get her to get up and play, but she will wait until late tonight like she has for the past several nights. We are going to have to figure out how to remedy that problem.
We don't have to go back to Children's until May 27th, and then we are scheduled for a follow-up MRI. We are trying to get adjusted to a 'real' schedule, and have started taking the boys to school again every morning. Isaac will be getting his tonsils taken out in a couple of weeks (May 6th) so that will be our next major excitement. He asked Jesus to come live in his heart this past Friday (!!!) so he will be getting baptized soon. I guess this is his month for all the excitement, and we are glad to give it to him. We'll let you all know how everything turns out with his surgery, I'm sure it will all go fine. Take care.

Wednesday, April 16, 2003 10:50 AM CDT

Hi Ya'll!! Can you believe it, a new update and it's not been a whole week!! We didn't have to go to Birmingham this week!! We just had to go to the hospital here in Cullman and get blood work done. All is great. We will go back to Children's next Wednesday and get the g tube changed out, see Dr. Reddy and get another swallow study done. Hopefully at that time they will give us the go ahead to start the feeding by mouth process. We are actually getting started on the speech and physical therapies. We have seen each of the therapists once, mainly to get an evaluation done, but the physical therapist stayed for about an hour and Alexis really did well for her. She sat up and played, reaching out and finding toys she wanted, and she is starting to stand up from her knees. She is also standing up for quite a little while at a time and taking some baby steps, with support of course. She does the standing and walking under protest, but it is getting done. She is sitting in her high chair at the table and playing with spoons and other little toys while we eat. It's nice to have us all at the table together again.
Adam had his ball game last night and after going into 3 extra innings (and playing an hour longer than normal) his team finally got beat. At that point everyone was just ready for someone to win, we didn't really care who it was. The boys were too tired to even care they got beat, and they are ready to go out Friday and win.
We hope you all have a wonderful Easter!

Thursday, April 10, 2003 11:42 AM CDT

Hey ya'll! Not only am I finally updating, but there are also pictures! Two of them are sideways, but hey, I finally figured out how to get them on the site! They were all taken at home. Alexis is doing great. This past Tuesday we went to the doctor - in the regular hem/onc clinic not stem cell!! This is a pretty big deal. It means that the stem cell doctors have decided they can't do anything for her that the 'regular' doctors can't do. She has not had to get any blood product since she has been in the hospital and her platelet count finally went up on its own. She has graduated from vivonex, a really broken down formula to pediasure and is doing fine there. She is sitting up, jibber-jabbering and playing more and more. She can stand up holding on to us and even take a few baby steps when we hold her hands. We won't have to go back to the doctor until the 23rd (yes, that is two weeks!). On that day we will get the regular bloodwork done, go to the surgery clinic and let them change her g-tube button (the surgeon does this the first time and then they train me how to do it), and she will also have another swallow study done that day. This will let us know if she can swallow without aspirating so we can start teaching her how to eat again. She will also be able to drink, which really helps her regulate her sodium. So that will be a long, tiring day I'm sure.

As far as the rest of the family goes, Adam, her oldest brother is playing baseball this yearfor the first time and his team is undefeated so far. There is one other team in his league that is undefeated and they will play each other this coming Tuesday evening. It is a lot of fun for all of us to go cheer him on. Isaac (that's the red-head in the pictures for those of you who don't know them) didn't want to sign up to play - until it was time to play the first game. They have another sign up day at the beginning of May and so far he says he is going to sign up then. We'll see how he feels about it then. Both boys are really enjoying having Alexis home.
Blake is staying busy, which is always a good thing! He has been enjoying having us all home too. I know it was really a strain having his family 75 miles apart! He did such a great job keeping it all together at home. A local radio station has an annual 'Bible bowl' and they get people qualified each day by having the people call in and answer Bible trivia questions. Blake got through, which was a miracle in itself since you have to be caller 25 - he called in the van on his cell phone. Anyway, he got qualified to be in a contest the next morning with 3 other people and the one who answered the most questions goes to the final. That morning the station had technical difficulties with their phones and so the just sent all 4 to the finals. He is so lucky!! So on the 31st of May we will be at the Galleria Mall in Birmingham to watch him compete with about 50 other people. The winner gets a minimum of $15,000 and the chance to go for a million! wow
Well, that's about all the excitement going on around here. The boys are out of school this week for spring break and driving me up a tree. It has been cold and rainy all week so they are stuck in the house. Think of us!! Hopefully I will update sooner than I did before (I do apologize, I will try to do better, but...) Go USA!!

Wednesday, March 26, 2003 4:30 PM CST

We are still here! I am so sorry it's been so long since I have updated. Of course I have plenty of 'reasons' but none really good. My home computer is old and slow and I have actually gotten on it more than once to update but have quit because I ran out of time waiting for the thing to download this site. Pitiful, I know.
Alexis is still doing great. We had an appointment this past Monday and we got there at 7:30, got blood drawn and waited until 10:45 for the doctor to see us so she could tell us Alexis is looking better than she has ever seen her and that we won't have to come back until next Monday and after that visit they are going to refer us back down to the regular hem-onc clinic! As I reported last, her platelets had gone from 47 to 87 last week. This Monday they were 135!!! As I was getting ready to leave they said that if I wouldn't mind staying until 1:00 I could go down to the surgery clinic and they would pull Alexis broviac central line. Of course I didn't mind at all so now Alexis is free! She still has her port that they will access when she goes to get labs done but she doesn't have those lines hanging in her way now. She looks great. She is starting to jabber more and she is sitting up a little and playing with a lot of toys. She really seems to like Bro. Jerry's (our pastor) singing. She sits on his lap and plays and bounces whenever she gets the chance. Of course he loves it too.
The boys are doing well also. They love playing with their baby sister. Adam,the oldest is playing baseball for the first time. He has won both of the games he has played so far. They have had games for the past 2 days and we have one more this week. Next time Isaac is planning on playing too. That should be interesting...different games, different fields. Oh well!
Hope you all continue to do well. We have been enjoying this wonderful spring weather! The boys aren't out on spring break yet. They are out the week of April 7th.
God bless! Pray for our soldiers and leaders.

Wednesday, March 19, 2003 10:05 PM CST

Today was another clinic day .. the joy of getting the boys up and to their Nana's so she can get them ready for school, getting on the road and driving to Birmingham at 6:15 and today we had the added pleasure of rain and tornado warnings! Alabama is such an exciting place to live in the Spring. Thankfully the rain wasn't too terrible and the tornado warnings were over by the time we got to leave clinic! I didn't even know about the tornado warnings in Cullman, I saw it on the TV after I got to Birmingham. Alexis is doing very well. Her platelet count went from 47 on Monday to 87 today!!! Monday all her counts were a little low and they had taken the nose swab to make sure she didn't have a bug. All was clear bug-wise today and her counts were back up. In face, she looked so good we don't have to go back until Monday! I think I forgot to mention in my last update that we did get a call Monday after we got back from clinic that the pathology report on her spinal tap had come back and it was all good too. Alexis has been awake more than she has slept for the past couple of days, and today she has been more playful - and more verbal. She is starting to let it be known if you are doing something that ticks her off. That little scream never sounded so good! I am supposed to meet with the lady that will coordinate all of Alexis' therapies on Friday. Hopefully we can get that going next week. Ya'll have a great day - I hope the weather where you are is as beautiful as it was this afternoon. We were in the 70's and all the 'yuck' had blown out of town! Those of you who live east of AL will be getting it in the next day or two. Sorry! God bless you all, and God bless America. Remember our soldiers and leaders in prayer!

Monday, March 17, 2003 9:26 PM CST

All is well on the home front...
Alexis had another checkup today and she is still doing well. We have to go back Wednesday, and then again on Friday, and hopefully after that we will be down to 2 days a week. After spring break we will be referred back to Dr. Reddy, the 'regular' neuro oncology doctor. We will probably only be going once a week then, but I'm not quoting anyone on that, just assuming, I won't say more!
We do appreciate all the people who have been checking this site and signing the guestbook. It is so encouraging to know that you all still pray for us and care about us. I have been asked by several people what Alexis' prognosis is now. This is what we have been told... Officially, Alexis' prognosis is still the same; they cannot declare her 'cancer free' because there is still that 'area' on her spine that they don't know what it is and there was some enhancement in her manengies (I'm sure I slaughtered the spelling of that!!). All this means is that when they did the MRI they did not see a perfectly clear, 'normal' brain and spine. They are confident enough in her status that they sent us home and are not planning on giving her any more treatments unless something shows up on one of her follow-up MRIs. Her next one is scheduled for May 27th. Of course, if she were to start acting symptamatic in any way they will do one earlier. They use something called the Collins Law in medulloblastoma patients to determine when to declare them cancer free. They take the age of diagnosis (we say 2 yrs since she was a little over 23 months), double it and add 9 months. This means pretty much when Alexis is 5 they will say she is cancer free.
Right now Alexis is doing well, her labs are continuing to look good and she is tolerating her maximum rate of feeding without too much gagging. She is still sleeping a lot, probably from one of the medicines she is on right now. She is on several medications that will get tapered off the farther out she is from transplant, and I'm counting on that one being one of them! We know she will always have to take hormones, and we have a wonderful Dr. at Childrens who will help us with her endocrine problems for many years to come. Now our main goal is to get her up and moving, then work on the eating thing. One thing at a time, one day at a time. We continue to trust God to keep His hand on Alexis and keep the cancer out and the strength growing! The boys are so excited to have her home and they are so ready for her to start playing with them more. I know this has been a rather lengthy update but I wanted to answer some of the questions I have been hearing. God bless you all and God Bless the USA!

Friday, March 14, 2003 9:26 PM CST

Boy, have we enjoyed being home! It is so nice to sit on a couch, on a chair that isn't vinyl covered, to be able to walk from room to room, to sit in the living room and not see the bed...and the list could go on and on! I have truly learned to be thankful for the 'little things'. We had to go back to the clinic today for a checkup and Alexis did not have to get any blood products; she did have to get some extra fluid because she was a little dehydrated. She looks and acts much better now. When she is 'dry' her sodium gets high which makes her fidgety (is that a word?) and her eyes look dark and sunk in. After she got her little fluid bolus we got back home and she snoozed most of the afternoon away. We will have to go back Monday. We will be going 2 times a week for a little while, which is much better than every day like most of the patients have to when they are newly discharged. That is because Alexis stayed in-patient for most of her out-patient time! She is tolerating her feeds very well and we have even added more water to the combo - that will keep her hydrated and will help her regulate her sodium better. Next week I will meet with a lady from Early Intervention, a state program that is to help get us set up with physical, speech and occupational therapy. We will only be with them for a few months since they only work with children under 3. Then we will have to start going to AIDB (Alabama Institute for the Deaf and Blind). Hopefully by the end of July we will have made some major progress with Alexis' getting around and talking. We have to wait until the doctors release her from her NPO (nothing by mouth) before we can start working on the eating thing. They are waiting for a little while on that because in early February when they did a swallow study on her she aspirated everything she tried to drink and they want to make sure she is over that before they let her eat or drink. Right now she is getting everything through her g-tube.
Adam and Isaac are sure glad to get their little sister home! It is so sweet to see them cuddle up next to her and play with her. She loves her brothers too! We will give a report on Daddy once he makes it back down out of the clouds he is walking on from having his baby girl back home.
Have a wonderful weekend and God bless you all!!

Thursday, March 13, 2003 9:54 AM CST

Hello from Baileyton! Yes, we made it home yesterday. I just took a moment to let you all know that we are home, Alexis is doing well and it is quiet here!! You don't realize how loud the hospital is until you are not there. I know Alexis wonders why her vital signs aren't being taken every 4 hours, her diaper changed every 3 hours and at least 4 different people listening to her heart and belly all the time. We are enjoying it. The house looked great - until I unloaded the van! I am working on getting it back in order. We go back tomorrow for a checkup and then we will go on Monday and Thursdays. Thank you all so much for all the prayers that have gotten us this far, and keep them coming! Alexis should start all her therapies soon. I'll let you go, Alexis is rolling all over the floor! She won't stay on the mat I made for her!!

Wednesday, March 12, 2003 7:06 AM CST

Day +65 -- and that's since transplant, we have actually been here 75 days!!
Well, well, can you believe this is the last update from good ol' room 660?! Not the last update by a long shot, but at least the other ones will be from home! I just saw the nurse that does all the outpatients and she was getting Alexis' outpatient chart ready! Actually, she's had it ready for a couple of months, but now she's getting to fill in the dates! Alexis is having a ladybug 'goodbye' party. I think it's neat that they give the kids a party when they get to leave. It is indeed a moment to celebrate! I'm not sure if they are giving us a party or if they are partying because they are finally getting rid of us!! I'm sure 660 will be called "Alexis' room" for quite a while.
I have to finish packing up the room, and you can imagine how much 'stuff' can be accumulated in 75 days! I tried to not bring too much, but it did seem to keep adding up. Good thing I have the van here! I'll let ya'll know when we make it home safely and get settled in the house. Thanks for all the prayers and support that has made this day possible, and I am forever grateful to the wonderful doctors and nurses at Children's Hospital. I have truely been impressed. God is good!!

Tuesday, March 11, 2003 10:11 AM CST

Just got an all clear on the spinal fluid!!!!!!!!!!!
We are getting ready to go home. Alexis is on her last few minutes of IV fluid and then they will disconnect her. She had her last physical therapy session up here earlier and I am starting to sort through all my 'stuff' up here so I can get some of it to the van today. It looks like we really are going to make it out. Thanks again to everyone who has been praying for us these past several months - don't stop now! Got to go to our discharge planning meeting!! Later..

Monday, March 10, 2003 7:21 PM CST

Found out late this afternoon that we won't find out about the spinal tap cell results until tomorrow. Good news is that the doctor herself said that we will be going home on Wednesday. We are doing well on the feeds and Alexis will be off all extra IV fluid tomorrow. I have a 'discharge planning' meeting with the doctors and who knows who else in the morning so we can plan what needs to be done when we get discharged. I am so glad they are doing this; I feel like a new mom with a newborn baby going home for the first time! I am so ready to get on with the re-hab part of this, and so ready for Alexis to finally be home with her brothers and daddy.
Have a great night!

Monday, March 10, 2003 3:48 PM CST

We have had a busy Monday! When Dr. Sande came in to see Alexis this morning she confirmed that she is going to have a spinal tap (lumbar puncture to be more technical) today. They will do it around noon, which of course turned into 1:00. She had Simon Sedation for it, which was a first for us. They put her to sleep, but she was still breathing on her own. They had to come get her and take her downstairs to do this. I was able to stay with her until she went to sleep. They checked her CSF pressure, which is great(!) and they took a sample to check for any tumor cells floating around. They will have the results back soon- they said they would let me know results this afternoon. There hasn't been any sign of anything in the past, it will just be good to hear the all clear again.
This morning before she went down for her spinal tap some people were up on the floor doing video for the Children's Miracle Network and they came in to get Alexis on tape. I signed a photo/video release form, so we'll have to keep our eyes open for her!
We won't be going home Tuesday like originally planned, but they are saying Wednesday now - are we surprised? Hopefully we really will be able to make it by then. They are still trying to get her feeds up to max and they should have it done by tomorrow. Then a day to watch her. It is such a blessing that they are letting us go home, not have to stay here in Birmingham for a while.
HUGE thanks to all the people from church who went and cleaned the house Saturday in preparation for Alexis to come home!!!! You all are absolutely the best.
I'll update about the spinal tap as soon as I find anything out! until then........

Sunday, March 9, 2003 4:38 PM CST

Happy spring - well, almost! It sure looks like spring is here today in Alabama. Not that Alexis would know. She has slept the day away. She was up quite a bit last night, not fussy, just awake. I guess since she has been taking those benadryl-indused naps during the days she has once again gotten her days and nights mixed up. And just in time to go home! Her feedings are going very well. She is tolerating those increased better and better! Her hair is really starting to show itself too. I'm not ready to commit to the color yet - could be white/blond, but I'm not ready to count that red out yet. No matter what color, it is really starting to get thick. Beautiful!!
When Alexis has been awake she is really letting us know if we are making her mad or bothering her too much. Temper, temper. Today has been a very quiet, restful day; I guess getting ready for tomorrow when they are supposed to admit 2 new patients up here. Right now it's just Alexis and Austin, a 6 year old who had his transplant a week after Alexis. We will just enjoy the quiet while we can....

Saturday, March 8, 2003 12:25 AM CST

We hope everyone is enjoying this pretty almost-spring day! We have had a pretty good morning. Alexis jibber-jabbered most of the night. I told her nurse this morning that I was going to get the video camera ready tonight so I could record her. She won't do it at all during the day. I guess there is just too much going on. She got platelets this morning so we are having another benadryl nap. When she got her MRI Thursday they didn't do the normal spinal tap that they normally do because her platelet count was down, but since they knew she would get platelets over the weekend they have one on schedule for Monday. They check the brain fluid pressure and verify that she has no tumor cells in her brain/spinal fluid. The did that on the last MRI they did, so they just want to verify that nothing has changed.
Alexis is off all her IV 'food' and just on her tube feedings now! She is not quite at the maximum volume yet so until she gets there she is getting a little IV fluid just to keep her hydrated properly. If she starts getting dehydrated at all her sodium goes crazy and they end up chasing it around for a couple of days at least before they get it back under controle. She is doing great, looking good and ready to leave this place! By the way, I have joined the ranks of the 'bitten'. Alexis got hold of the inside of my arm when I was holding her hand last night. Doesn't feel too good, I must say!
Have a restful and relaxing weekend!

Friday, March 7, 2003 11:39 AM CST

Alexis is showing her stuff this morning! After being up most of the night with diaper changes they decided that they may have gone up too quickly on her feeds. They cut them back a little and she is doing much better today, but boy is she ever in a mood. Her Nana and Papa came to see her this morning, and of course they were holding her. She started snuggling up to her Nana's neck, and Rita was just commenting on how sweet it was when bam! Alexis bit her neck. Enough to leave a nice red mark too. Papa said to make sure to notice that she didn't bite him! He is looking forward to getting her home so he can rock her on the front porch.
She is going to get some more blood today. They pre-medicate with tylenol and benadryl so riht now she is snoozing up a storm. Hopefully Alexis will keep tolerating her feeds as they continue to increase. We are just going to increase them by 5cc instead of going up 10 at a time.
Her surgery site is looking great and she isn't trying to pull anything out,always a plus! Hope you all have a wonderful weekend.

Thursday, March 6, 2003 3:44 PM CST

Finally Dr. Reddy came up to the room. She said that the MRI looks good. The spots that were on the brain in December are gone(!). The spots that they saw on her lower spine that they didn't know what they were are still there. She said that she has another patient that has the same thing going on so she is not as concerned about that as she would be otherwise. They will do another MRI in 6 to 8 weeks. This is normal. Once a patient is no longer taking chemotherapy they check them often.
I have heard 'unofficially' that we will be going home not at the end of next week like they originally planned but more like Tuesday afternoon. And, like I mentioned before,we won't have to stay 'in town', we will be able to go home. Alexis is tolerating her feeds very well as they increase the volume and they are almost finished converting all of her medicines. I did Alexis' 4:00 feeding this afternoon and all went smoothly. Alexis is a bit of a grouch this afternoon. She has been sleeping quite a bit today,'recovering' from the anesthesia she had today for her MRI.

Thursday, March 6, 2003 12:48 AM CST

Alexis is taking a nap and looking good. She got back up to the room around 11. Her nurse practitioner called and said that they would be up this afternoon to give us details on the scan but when Dr. Reddy looked at it right after they did it it looks good. More details to come....

Thursday, March 6, 2003 9:21 AM CST

I just got back upstairs from carrying Alexis down to MRI. It will take about 45 minutes to 'prep' her, they will do the MRI, which I think usually takes about an hour, then take her up to the recovery room where they can monitor her as she wakes up. They said she shouldn't be in recovery very long, like around 15 minutes. I'll keep you posted............

Wednesday, March 5, 2003 1:20 PM CST

Day +58, one day from MRI!
It's kind of hard to believe we have been in this room 2 months and 5 days, and then again it seems like we have been here for years. Alexis is doing well today, nothing new going on other than she is getting a 'snack' every 3 hours instead of the continuous drip, and she is doing fine with it. They will increase the volume of formula every 9 hours by 10cc. She is showing her personality more each day. This morning when Dr. Sande came in and looked at her Alexis smiled for her. Alexis also has favorite nurses, but I won't mention any names since some of them read this and I'd hate for them to get big heads!! All the nurses and doctors up here are absolutely wonderful. I couldn't ask for a better place for Alexis to be. They all really care.

Tuesday, March 4, 2003 5:35 PM CST

Just a quick follow up on this morning's update. Dr. Sande just left and she had some good news this afternoon. Things are picking up fairly quickly now after waiting the entire month of February just twirling our fingers. This evening they will start bolusing Alexis's feeds. She will get 30ccs every 3 hours. As I mentioned earlier they are going to change a medicine every day over from IV to tube and if she tolerates everything well we may possibly, hopefully get to be discharged by the end of next week. The best part of that is that we will be discharged to go home - home as in Baileyton, not Hope Lodge!!!! Alexis really needs to tolerate her feeds well for that to happen, but she has done great today on 5cc/hour. We, Blake and I, will meet with several of her doctors and therapists on Tuesday for a 'discharge planning' meeting. It was exciting and encouraging to hear her say that we are at the point where Alexis' medical condition is not totally overshadowing all the therapy (physical, occupational, speech) needs. For so long we have heard, Yes, she needs some help getting up and going, but we need to get her medically stable first. We still have a long, long way to go, but at least we are able to get on the road toward full recovery. Isn't God good!
The answer to the time of Alexis' MRI is typical - There is one person scheduled before her, outpatient, but if anesthesia is ready to go and they are not ready Thursday morning they will come get Alexis first. Otherwise she will be 2nd. The first one is scheduled for 9am, so she should be done by noonish or a little earlier regardless of if she goes first or second. Does that make sense? It would if you have been around here at all!!

Tuesday, March 4, 2003 12:18 AM CST

It is noon and Alexis has had a busy morning. She woke up early - it was actually not a problem to have her wake me up at 4am running a toy back and forth on her bed rails. At least she wasn't waking me up having a fit because the nurse was changing her diaper- which they do every 3 hours. This morning we went up to 5cc/hr on her feeds. They are going to start changing 1 medicine a day from IV to the tube and this afternoon they are going to start trying to bolus her feeds. That means they are going to put in a lot at one time instead of letting just a little bit drip continually. This is what we need to get out of here! Of course they are going to start with just a little bit at a time, but we've got to start somewhere!
Alexis has been up and playing with physical therapy and they wore her slap out! As soon as they left she turned over on her play mat on the floor and went to sleep. She is so much more alert now than she was just a few days ago, and she looks really good. She has recovered from her surgery wonderfully. She is still not wanting to sit up on her own, but we were not having much luck with her doing that before the surgery. She will when we just make her, but she does it under protest. Her eyelashes are getting long! Her little head is no longer smooth and shiny - it has sprouted peach fuzz too. If you sit her up in the sunlight just right you can see it, but you can really feel it - when Alexis lets you. I just love to rub her head, and I guess she is sick of everybody doing that because she will push your hand off her head right away. We still haven't heard a for-sure time for the MRI on Thursday. Yesterday they called our house to tell us we needed to be in outpatient at 8am, but since we are still inpatient we have to wait and see what time it will be. Hopefully they will leave her on the schedule for 9am. Again, I'll let you know as soon as I know! One thing I've learned in the past 9 months, there is no hurrying anything here!

Monday, March 3, 2003 2:04 PM CST

We are up to 4cc/hour on the feeds and having no problems! Alexis has been awake and 'talking' most of the day. She still does not want to sit up by herself, but we are getting her down on the playmat and making her several times a day anyway. She has started picking up and playing with some of her toys and really interacting with the nurses - and they have the pinch marks to prove it! We are just taking it a day at a time with the feeding, but it's looking much better - and I'm sure you will be thrilled at this update, but hey, she's pooping good now too! Platelets are at a whopping 140, thanks to a transfusion yesterday. Her red blood count is starting to look a little puny so she might get some blood tomorrow, but nothing has been said about it yet. She hasn't had to have a blood transfusion since the 18th of February, so she is doing pretty good. Fever is a thing of the past. Now we just have to get her up and playing more. Remember us on Thursday -- MRI day! I'll let you know the time when we find out something.

Sunday, March 2, 2003 1:33 PM CST

Today we took 2 steps forward and only 1 step back. This morning they took Alexis off the monitors she has been on since her surgery. They were waiting on her heart rate to go down. It had been a little high since her surgery. They also went up on her feeds this morning to 4cc/hr. That lasted a whole hour. She almost immediately started gagging and trying to make herself throw up - the ol' fingers down the throat trick. They turned the rate back down to 2 and she has been ok all day so far. Later this afternoon they are going to try her at 3. She got platelets today again. She should be good to go now for at least a couple of days. Those platelets of hers should start kicking in any time now. They probably will now that we aren't waiting on them to go up for her surgery. They are slowly changing her medicines over from IV to the tube. I think they are just doing a couple every few days. She has tolerated getting them in her stomach alright so far. Nothing else going on today. Just a lazy cloudy day to snooze, which is what she's doing now. That is one thing she's got down pat!

Saturday, March 1, 2003 9:28 AM CST

Today is day +54. Yesterday afternoon we started dripping feeds in Alexis' tube at the unbelieveably slow rate of 5cc and hour. That is 1 teaspoon of formula every hour. She did pretty well for the first 5 hours, but then she started wanting to throw up. OOPS! That isn't possible anymore-and they really don't want her to strain too much so she won't tear anything loose. The nurse emptied her stomach and they shut the feeds off for an hour to give her gut a rest then they started them back up. By midnight she was gagging again so the doctor said to just leave them off for the rest of the night so she could get some rest. Today the plan is we are going to try 2cc and hour. Either that will do well or it will just be twice as long before she starts gagging. Getting out of here next weekend isn't looking like it's going to be happening. I'm really not terribly surprised either. Other than that little problem she is doing good. Her liver functions look much better this morning and her platelets stayed up after the transfusion yesterday! They were 130 this morning, so she won't have to get more today. We can see the light at the end of the tunnel, it just isn't getting brighter as fast as we had hoped it would. Thursday is the follow-up MRI. That is a really big deal since it will let us know how well all this has worked. Pray that they won't see anything but brain when they read it! The last MRI showed just a couple of spots on her brain, which was great then, but now we need to not see any at all. That would mean the cancer is gone. That is what we are planning on hearing Thursday afternoon. Please really keep us all in your prayers this week, even more than you have been. I'm not nervous about it, just ready to hear that all this we have put Alexis through these past 9 months is worth it. And it will be. We still will have a long way to go getting her caught back up, but now at least we are working on those things that have been kept on the back burners for so long. Please pray that Alexis will start tolerating her feeds. Temp is down to 98.7 so that is a blessing! Have a great weekend!

Friday, February 28, 2003 1:26 PM CST

Well, there are no major problems today, just several little questionable things going on. Alexis' labwork for her liver functions are a little out of wack, which is what they expected to eventually happen with her on the TPN (IV 'food')for a long period of time.She has been on it since the end of November. One of the reasons they wanted that G-tube placed is so they could get her off the TPN which is known to cause liver damage. She doesn't have liver damage now but they want to 'nip it in the bud'. A docor from surgery came in this morning and took her purple stitches out and the surgeon's nurse came up to give me some info and a video to watch on how to take care of the tube. Looks pretty easy, as long as everything is working right that is! Alexis is still running a low-grade fever and is on every antibiotic available to fight anything she might have. They are going to start dripping some formula in her tube over the weekend to get her gut ready for the real feedings starting next week. Our first step. That is what we will be waiting on (that and for her to get rid of this fever)to get out of here! We have started putting some medicines down the tube and hopefully will get the rest of them changed from IV to tube soon. One more step. Alexis has had the hiccups off and on all day, which I know can't be very comfortable in her situation. She just got her tylenol and benadryl for her platelets that she will be receiving shortly, so she is resting really well at the moment. She has been playing with me a little this morning and making some noises. Right now it's bathtime - yeehaw!!

Thursday, February 27, 2003 5:16 PM CST

Alexis has done pretty well today. She tried to run a little fever this morning, just enough for the doctor to order blood cultures and a chest x-ray (they cover all the bases first and ask questions later). They are giving her small doses of morphine every once in a while to keep her comfortable. She got platelets this afternoon, so the benadryl and tylenol they give her before she gets them knocked her out for a few hours. Her temp is down now and she is resting quite well - better than I would be the day after a surgery like that, I'm sure! I think they are going to start putting pedialyte in her tube tomorrow to make sure everything is working ok. They did use it this afternoon to give her tylenol. They have had it draining since surgery and this afternoon a surgery resident came in and clamped it, so I guess that's one small step in the right direction.

Wednesday, February 26, 2003 5:32 PM CST

At 5pm Alexis was back in her room. Surgery went fine, she looks great and she turned over on her belly and went to sleep right away. They are keeping her on the monitors for the evening and doing more frequent labs to make sure her blood counts and sodium stay in line, but no problems are expected. Thanks for all the prayers today!

Wednesday, February 26, 2003 8:23 AM CST

Just a quick update to let you know that Alexis is going to surgery at 1:00 today. At least, that is what the plans are at the moment, and we all know they can change at any time! I think this time she really will go. She is getting platelets this morning and all her other lab counts look good. She is really starting to show her personality again. She is also starting to grow back some eyelashes, and at the moment she has pre-peach fuzz. You can feel it but not really see it yet. Can't really tell what color it is going to be. I'll let you know how she's doing tonight. They will come get her to go down to OR around noon and the surgery will last an hour or two, then she will spend another hour in recovery, so she will probably be gone around 4 hours.

Tuesday, February 25, 2003 12:51 AM CST

Looks like we are going to surgery tomorrow! I haven't heard a time yet but the culures they took Sunday have not grown anything. I came home yesterday to be with the boys a couple of days while they are out of school for winter break this week. We have been watching movies and playing games and having a good time. Blake's mom is staying with Alexis while I'm away. The weather was supposed to get very 'wintery' today but so far it looks like we are going to miss any bad stuff. It's just really cold! For you northerners, really cold here is in the 30s!
They are planning on giving Alexis platelets either today or tonight and probably again tomorrow; her platelet count was down to 25 today (they want it at or over 100). I will update you all as soon as I find out any news on surgery time. It will be so nice to actually be doing something instead of just sitting and waiting like we have been doing the entire month of February!

Sunday, February 23, 2003 1:21 PM CST

Yesterday was just a sleep-the-day-away kind of day. Alexis woke up for a couple of hours to visit with her Nana and Papa and for a little while to get a bath, but other than that she pretty much snoozed the day away. She was awake most of the morning today, got her bath early and was in a really good mood afterwards. After lunch Blake and the boys came to visit her and they are currently watching the nascar race. They got a urine culture this morning so they will know by Tuesday afternoon if she will go to surgery on Wednesday. I'm not writing anything down on my calendar yet! Hopefully she will be able to have her surgery this week so we will get out of here before the end of March. I'll let you know as soon as I find out the verdict on the culture/surgery. Since she has been on anti-biotics since last Monday they are fairly confident that her UTI will be cleared up.The only other thing going on with Alexis is that she is teething - those 2 year molars are coming in and she is drooling like crazy. Thankfully they are not making her run a temp. She'll probably wait til the day of surgery to do that!

Friday, February 21, 2003 11:05 AM CST

Well, now that I am really awake I will update you a little better. Yesterday afternoon I made the mistake of taking a nap and didn't get sleepy til very late last night. That is when I set up this page - and misspelled several words! Alexis is still doing well, as I said before we are just hanging out waiting for the UTI to clear up. They are going to do another urine culture on Monday and wait until Wednesday late morning to make sure nothing grows. They have surgery scheduled for Wednesday afternoon/Thursday morning so that if the culture is still negative late Wednesday morning she will go to surgery. It should be negative since she has been on antibiotics for it since this past Monday. After the surgery she will be in the hospital for about a week to get everything changed from IV to tube. Since they said it would be about a week I am sure it will be at least 2 weeks. Then we will be at Hope Lodge here in Birmingham for about a week and then we'll get to go home! Alexis' follow up MRI is scheduled for March 6. I'm sure that afternoon you will here great things from us! Hope you all have a wonderful weekend!

Friday, February 21, 2003 1:21 AM CST

Hello to all of you who have been after me for weeks to get a web site for Alexis! We are currently doing fine, just haging at the hospital waiting for a urinary tract infection to clear up so we can have our surgery done -- Alexis needs to get a gastronomy tube placed and have a fundopication for her severe reflux. Right now she is having to get all of her medicines IV because of her reflux and the fact that she is aspirating everything she swallows. We are working on getting her up more and trying to make her sit for a while each day and play. She is starting to say a few words (at least, I'm sure they are words to her) when she thinks nobody is around to hear her. I am going to try to get some pictures in the next couple of days...that should give me something to keep me busy for a little while at least! Thank you all for your continued prayers. we sure have needed them!

Friday, February 21, 2003 1:10 AM CST

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