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Saturday, March 14, 2009 6:42 PM CDT

Post Transplant 6yrs, 5mo

Just a quick update to let you know that Laney's hip surgery is set for next Friday, March 20th, at Duke. We will be heading back this coming week for a pre-op apoointment and a check-up with the eye doctor. I will not know the surgery time until the day before so I will try to post when I know more. We will for sure be on the bone marrow unit through the weekend. Erin will start her 6mo post studies bright and early Monday morning on the 23rd. Busy week...

Laney is doing ok. Her hips and legs hurt everyday, sometimes it's even first thing in the morning. She said she was ready to get this over with although I believe the anticipation is working on all of us. Thank you to everyone who have been checking in on her with phone calls and cards. She really enjoys getting mail.

Laney's physical therapist came the other day to do my transfer training. The wheelchair and other needs are in place. This is going to be a long and difficult process for all of us. I keep reminding Laney that after it is all said and done our goal is to be pain free. It's hard for us to watch her walk in pain and it will be hard for us to watch her go through this surgery. Please remember her. Please pray for her strength to overcome this obstacle.

Love,
Beth Anne

Saturday, December 27, 2008 8:05 AM CST

Post Transplant 6yr, 2mo

We had our appointment with Dr. Fitch on the 23rd... and got the news that we really were not wanting to hear. Miss Laney is scheduled for surgery on March 20th. Dr. Fitch will be treating Laney's hip displaysia caused by her disorder in hopes that it will help the mild AVN caused by steroids. We will need to be in Durham on the 19th for pre-op, surgery on friday the 20th, and if all goes well maybe be headed back to TN around Monday, returning around 4 weeks for a check-up. Laney will stay on 5200 the few night following her surgery for the bone marrow team to provide her care. She will be completely off of her feet for 4 to 6 weeks, in a wheel chair, and she should not require a cast. He will take a small triangular peice of bone out of both hips so that the hips will turn in more like someone without Hurler. This will in turn help the bone go deeper into the socket and treat the AVN. Laney and I, of course, were both hoping for different findings but she is ok with it all now. She and I had a long talk in the doctors office about why we needed to do it now and what could happen if it were not treated. She knows in her own 6 year old mind what the extent of recovery will be, I just haven't quiet broken the news yet that this will knock her out of soccer for the spring (and maybe even the fall). One day at a time...

Take Care.

Beth Anne

Monday, December 15, 2008 4:58 PM CST

Post Transplant 6yr, 2mo

Long time, no update on this site, huh? Once we welcomed Laney's baby sister, Erin Grace, into the world things got a little busy.

Laney is doing well, adjusted very good to transplant life as a sibling. She has learned alot about her own battle in the last few months. We have been accomplishing her own transplant studies little by little over the last few months and still have the developemental one to go. Both girls will see Dr. Escolar's team on January 13th. Laney is being followed closely with her ortho doctor right now. Her MRI showed signs of AVN in her hips. This is something that usually happens with heavy steroid use but Dr. Fitch thinks it might be related to Hurler Syndrome, he is following another Hurler child with the same symptoms right now too. She will have a repeat hip x-ray on December 22nd and see Dr. Fitch on the 23rd. He said that if the x-ray shows signs that he will probably want to go ahead with surgery to help the problem. Laney will have to be off of her feet for 4 to 6 weeks if this occurs.

I will take Laney this Thursday to have a panoramic x-ray at the dentist. She lost her first tooth, a molar, a couple weeks ago and there is some concern about her permanent teeth. The chemo she received during transplant can kill the permanent teeth. We will also see the opthamologist Friday to check her vision. For some reason she is hoping for glasses.

This is a brief update. I will try to update more with our upcoming results. Please keep in prayer that Laney's hips are ok and she has her permanent teeth. Dr. Martin said it might just be muscle pain since she only really has it at night.

Take Care.

Beth Anne

Saturday, August 9, 2008 9:20 PM CDT

Erin Grace Biggs born Friday, July 25, 2008 at 2:56pm
8lbs 1.1oz, 20 1/2"

www.caringbridge.org/visit/erinbiggs

Sunday, July 6, 2008 12:09 AM CDT

Post Transplant 5yrs, 8mo

Don't fall out of your chair, you are actually reading an update! We hope all is well out there to those of you who still check in on us. We have had a busy year and I have just not made the time to do an update. Please forgive me and here it goes...

First and foremost, our most important subject, Miss Laney Biggs. As you can see from the updated pictures she is doing very well. We made it through the kindergarden year and are not looking forward to first grade, still afraid of missing mom! Although this is really hard for me it is a part of life that we must all face as moms. I too am already dreading the first day.

We made a little trip to Durham at the end of May for surgery. Laney had a hernia repaired, tubes placed, and adenoids removed and did very well with it all. We were there all week with all of the pre-op appointments and came home the day after surgery. If Laney could've had it her way we would've been traveling that night! She was ready to get far away from that place.

There were probably a dozen things I meant to share on this site over the last year but I guess that is how it goes when you don't update. The last thing that comes to mind to mention about Miss Laney is the thought of embarking on another year... another birthday and another transplant anniversary... six years! Boy has time flown!

Last but not least... we have some news to share! John, Laney, and I are awaiting the arrival of the newest addition to our family. Laney's baby sister, Erin Grace, will be here in the next three to four weeks. Needless to say, there have been many overflowing rivers of tears and emotions as we prepare for the journey that lies ahead. We will head back to Duke for another transplant around September 1st. I will probably set up Erin a new site since this one is one of the older ones. I will post it on here when I do. As for Laney, she is very excited about her sister and thinks it is really neat that Erin is going to be "just like her"! I try to remind myself that this all may be to help Laney better understand who she is and why she is so special to many.

Well I guess that is about all for now. I will update later about Erin's site and hopefully it will be before she arrives. Please keep me and my family in your prayers, we all have a rough, emotional road ahead of us.

Until next time...

Take Care.

Love,
Beth Anne

Wednesday, October 24, 2007 7:48 AM CDT

Post Trnasplant 5 years!

Hey guys! I am finally back to start an update (a few days later...ha!). Things seem pretty crazy around here with the move and starting school, so I appologize for the delay.

We had a wonderful summer enjoying a trip to the beach and our trip to Chicago. This was Laney's first trip to the beach and she has asked a couple of times when we were going to go back! The three of us practically lived in the lazy river at the hotel.

Our trip to Chicago was filled with fun and excitement. Believe it or not, our first time flying went as scheduled...no delays and/or problems through security! We have been told that we were lucky that the first time went off without a bang! During the first take off in Knoxville Laney looked at me (sitting next to the window) and said "This is cool!". I am gald she wasn't the least bit frightened! Laney and Laura Grace absolutely loved the American Girl Place. I could honestly type for hours about the trip...the moms had just as much fun as the girls! I put a few pictures in the photo album of AG Place but it was hard to decide which ones to download so I may have to change them in a couple of days.

We celebrated Laney's five year old birthday on the 14th of August and her five year transplant anniversary on the 16th of October. We had a small "Coconut" birthday party at home with family and friends along with our trip to Chicago. The night before Laney's transplant anniversary I asked her if she still wanted to celebrate her special day (she isn't real crazy with talking about Duke stuff and does not want to look at the pictures anymore) so I gave her the option of how we wanted to remember that day. Her reply was yes so I then asked her what she wanted to do after we picked her up from school. "I want to go eat Mexican and go to the park" and that is what we did. I just amazes me that five years ago we did what we did to give her a chance at life. I would do it all over again if I had to but I pray and hope that I am never faced with that again. It is hard to put into words what life is like "through transplant". We will make our way to Durham in two weeks for our five year studies. Please remember us in your prayers that we will be strong for Laney and especially remember her. Pray she will have extra strength for the very long week of test. Dr. Fitch will probably make his decision about the back. Whatever she needs we will do.

On a lighter note (maybe), we have moved. Or atleast I can say that most of our "stuff" has.

Saturday, October 13, 2007 9:41 AM CDT

Post Transplant (almost) 5 YEARS!!!

Hey guys! Can you really believe you are reading an update?

Saturday, June 2, 2007 3:31 PM CDT

Post Translpant 4yr, 7mo

Hello to all that are still checking in on Miss Laney. Yes, I am actually updating. We have been pretty busing around here with life just happening. So I'll try to update on what's happening in the Biggs' world.

We just took a little trip to the beach. We had a very relaxing and wonderful time and enjoyed Laney seeing the water for the first time. I could have stayed for days but I think Miss Laney was ready to be back in Tennessee.

Despite the much needed vacation, we came back home still looking for a place to live. John and I have been looking for another home for a couple months now. We found out several months ago that we would probably be relocating (in Rogersville). John's employer, TVA, is aquiring our home for a gypsem disposal site. So all of the blood, sweat, and tears that we have put into making our house our home are going to be torn down. The plus side to buying where we did is that John was two minutes from work. I felt more safe this way. It has all been hard to deal with but my mind is adjusting a little more. The only positive side to this move is that TVA has to move us (we get to save our backs on this one). So if anyone has any Rogersville suggestions they are much appreciated.

We are still working on strengthening Laney's back. She started physical therapy weekly in April and her therapist can already see some changes. Please continue to pray for improvements in Laney's back.

Miss Laney will turn five in August. Has time flown?! We have planned a big trip to help celebrate this milestone in our life. I am taking Laney (along with another Mom and Daughter) to Chicago to the American Girl Place. We will be flying out of Knoxville the morning of August the 9th and flying back on the eleventh. I am so excited for Laney (and all of us). We will be staying within walking distance to the AG Place. It will be a chance for us all to be five years old and loving Bitty Baby! I'll be sure to post some pics. We will have a small b-day party probably at home on her birthday.

Well I guess that's about all the new info for now. Until next time...

Take Care.

Beth Anne

Thursday, February 8, 2007 9:55 AM CST

*Well I am back on friday morning trying to finish this update...I finished it last night and saved it and somehow when I went here to re-read, it was only part here. I gave up for the night and went to bed. So Dr. Escolar's report is being added today...


Post Transplant 4yrs, 3mo

Hey! We hope that everyone is doing well out there. I am going to try to do my best in giving you a full update. We finally received all of our reports and we are very thrilled for our little girl!

Dr. Martin's report from Duke revealed that Miss Laney is still engrafted with >98onor cells and has a normal a-L-iduronidase level at 38.6 (her level before transplant was 0.25). Her height and weight are still low for her age but as to be expected, height was in the <5th percentile and weight was in 20th percentile. The pulmonary furnction test revealed a CVC 92 percent compared to 103 percent pre-transplant. The echocardiogram revealed a shortening fracion of 38 percent with normal left ventricular size and function (no change). Chest x-ray revealed no cardiopulmonary disease.

Dr. Fitch's report (ortho). MRI of the brain was normal and MRI of the hips revelaed bilateral coxa valga, with 20 percent uncovering of the right hip and 20 perecent uncovering of the left hip. "Her kyphosis is stable and remains flexible. She has mild hip dysplasia. Continued observation. She may come to spinal arthrodesis in the future but I do not feel that it is indicated at this time."

Dr. Escolar's (developmental team) report was very good considering they hammered Laney with questions for a staright five and a half hours. But she was such a trooper. Laney's kyphosis and speech (can't say "s" words that are followed by a consonant, "smell" is "pell") did alter some of her scoring. She could not run as fast as a child her age and ran a little differently. She catches a ball close to her chest instead of away from her body. Those are a couple of the things that she did not do correctly. We are in the process of resuming physical therapy and starting speech. Laney was 4yr,2mo at the time of testing. Here are some of her scores:
Visual Reception 5yr
Fine Motor 4yr,5mo
Receptive Language 4yr,7mo
Expressive Language 4yr,2mo
Stationary 4yr,2mo
Locomotion 2yr,11mo
Object Manipulation 3yr,2mo
Sentence Structure 5yr,3mo
Word Structure 3yr,11mo
Expressive Vocabulary 6yr,11mo
Concepts and Directions 5yr,3mo
Recalling Sentences 5yr,2mo
Basic Concepts 5yr

So all in all Laney did quiet well with her four year post transplant studies. We will return in October 2007 for five year post studies and after that we will get to starting skipping a year!! This will continue for her lifetime.

Laney still continues to amaze us everyday. It is hard to believe that she will be turning five in a few short months and be starting Kindergarden in the fall. She is growing up too quick!

Until next time...

Take Care.

Love,
Beth Anne

**Oh, Check out the pictures...Of course I have to include our new "part-time" addition to our family!**

Thursday, December 14, 2006 10:06 PM CST

UPDATED PHOTOS 12/24/06

MERRY CHRISTMAS!!!!!


Post Transplant 4yr

Ho Ho Ho everyone! Sorry for the lack in updating...we still do not have all the reports in yet. Maybe late news is good news?! I will post it all as soon as I get everything.

We hope that everyone out there is doing well and enjoying the holiday season. Christmas is my favorite time of year! It was very hard being in Durham in 2002 for Christmas even though Laney was outpatient. I missed the feeling of being at home with friends amd family. But we made it through and had so much to be thankful for! Please keep in prayer all of the families that are going through transplant at this time.

Laney is doing very well. She is growing up so quickly. She is constantly talking about something. We started her in a gymnastics tumbling class a couple weeks ago and she loves it! Dr. Escolar wanted her in something to maybe help strengthen her back and said Laney should have no limitations. She had her last day of pre-school yesterday until after the first of the year, so we should enjoy a good break together.

We have been keeping Brady a couple days a week and we are loving every minute of it. I said that it must be the Lord's way of sending me another baby to help take care of. I could keep him forever though. Laney has really enjoyed being a "big sisiter" to him. I posted his first santa picture in the photo album.

The faimly that I mentioned in my last journal are in need of prayers right now. The baby, Makayla, is in the PICU and having a hard time. The older sister, Hailey, has been sick in the outpatient process as well. Please remember them. They are a very sweet faimly and know that they are so mentally and physically drained. Tisha, Steven, and Jan...we are thinking about you all and you are heavy in our hearts. We love you all!

www.caringbridge.org/visit/makaylachavers
www.caringbridge.org/visit/haileychavers

Well, I guess that is about all until I have some reports. If you stop by please sign the guestbook. It feels good to read the messages. Merry Christmas!

Take Care.

Love,
Beth Anne

Sunday, October 29, 2006 9:06 AM CST

Good Morning. We are still being a little lazy around here...still trying to recoup from the week...and so glad to be back in Big Orange Country!

Another year of studies behind us and Miss Laney was such a trooper! We don't have all of the reports back yet (it could take up to six weeks to recieve them), but I will share what we do know.

The lab work that was back by time we left was very good. Dr. Driscoll said her immune studies were wonderful...that she was fighting off everything that she should. The Enzyme and Donor studies will take a while but I will inform when we hear from them.

We saw Dr. Greene (eyes) Monday afternoon. Miss Laney is a little near sighted (which John and I both are), but Dr. Greene said it was nothing that he would correct at this time. He checked the light that Laney's eyes reflect...most Hurler children are betweem 60 and 70...Miss Laney was 146 (normal range)!! No corneal clouding!!

Tuesday morning started out with a trip to Chapel Hill to see Dr. Escolar. A very tiring visit. Dr. Escolar wants Laney to receive some speech therapy (she is having trouble with her "s" followed by a consonant) but says that physical therapy and shoe inserts are not needed at this time. I am very interested to see this report because Laney has always scored so well (the speech will alter the scoring). It will take a while to receive these scores as well.

Tuesday afternoon was an appointment with Dr. Fitch(ortho). Our main concern with this visit was Laney's kyphosis. It turns out the the intern last year misread the degree of the kyphosis. Dr. Fitch went back and re-read it. The bad news is Laney's back has not gotten any better but it has not gotten any worse either. Back surgery will probably be in the next couple of years. Even though transplant gives the enzyme that is needed, the stem cells do not grow in the bone areas and, unfortunately, this is where MPS children have the most trouble. The surgery will take place at Duke (if and when it may happen) and Laney will only need to stay there for about four days. After that she will be released to go home to Tennessee and will only miss about four weeks of school if during the physical school year. Because of Laney's age she will need a back brace and not a cast. Dr. Fitch said he considers the surgery a major surgery but a low-risk surgery. He also said that left untreated it could cause trouble later in life that may be hard to fix.

Wednesday's test consisted of an Echocardiogram and Pulmonary Function Test. These studies were normal for Laney.

Lastly, we had an MRI of the brain and bi-lateral hips on thursday. Dr. Fitch ordered this. He wanted to double check Laney's hips and make sure everything looked as good as it did on x-ray. Laney did well with the IV and the sedation (she walked around all afternoon like a little drunken lady). We should here from this pretty soon.

While we were in Durham we had the chance to meet another MPS family. Hailey and Makayla Chavers both have Hurlers and are there for transplant. Hailey is now outpatient and Makayla is going through transplant. Makayla is in Laney's old room on 5200. We went by there on Wednesday and Makayla and her family were waiting on her "new life" to arrive. Jan (Makayla's grandmother) gave Laney a "Grow Cells Grow" bracelet to wear for Makayla. I put a picture of the Chavers family in the photo album along with their web addresses. Please visit them and offer some encouragement.

We also had the chance to meet up with both of Laney's primary nurses. We ran into Jeanne on the 4th floor of CHC...she is now a NP for Brain Tumor and we met Maggie for dinner one evening. It is always a good feeling to see familiar faces but it also brings back so many memories.

Thankyou to everyone that have been leaving messages. It helps to know that we may help other families. We have heard twice now by two different doctors that Miss Laney needs to be the poster child for BMT. She is such a blessing to us all.

Take Care.

Love,
Beth Anne

Monday, September 18, 2006 9:02 AM CDT

Is anybody out there...? I guess that is my mood this morning. I've been contemplating even updating this site anymore. It sometimes comes in handy for families with a new diagnosis and/or to inform of Laney's medical front. I read a website journal lastnight that said "Does anybody visit this site anymore?" and I kind of felt the same way. I guess in time I'll make up my mind.

We are fast approaching a four year post transplant anniversary on October 16th. Our trip to Duke is planned for the week of October 23rd. We will travel on sat. the 21st and stay probably through fri. the 27th due to more testing. John and his mother will be along for the ride this year. I am actually excited for John to go because he hasn't been able to go back with us since we left there 100 days post in Jan 2003. But I am so dreading the MRI scheduled by Dr. Fitch on thursday because of the sedation. Laney is allergic to sedation and we found this out after her trigger finger release surgery in April 2005 when she had projectile vomiting in recovery. My stomach is in knots as I type... the IV and the sedation. I know that this is small obstacles to cross for the health of my child...it just makes me nervous. Anyway our schedule is as follows:

Monday, October 23rd
9:00am Labs
X-rays
Meet with Dr. Martin
1:30pm Dr. Greene (eyes)

Tuesday, October 24th
8:00am Dr. Escolar and team (devolpmental)
3:00pm Dr. Fitch (ortho)

Wednesday, October 25th
9:30am 4th floor CHC height and weight
10:30am Echo 7th floor Duke North
11:30am Pulmonary Function Test

Thursday, October 26th
10:00am MRI of the brain and bilateral hips

Laney is doing very well. She just started her second year at Friends At Play preschool and is adjusting quiet well. She knows it is time to head back to Duke but thankful that she doesn't really know what is in store.

I'll update after our return.

Oh, the new pics are a little blurry because I had to resize them. Sorry...

Take Care.

Love,
Beth Anne

Monday, August 14, 2006

Happy 4th Birthday Laney!!!!

We hope that you had a wonderful birthday party this weekend and have fun at Chuck E Cheese tonight!

We love you sooo much Miss Laney!!!

XOXOXO,
Mom and Dad

Wednesday, June 7, 2006 3:30 PM CDT

Happy 4th of July Everyone!!!

Post Transplant 3yr, 7 mo

Hello. We hope that everyone is well. There has not been anything really new to report about lately. Miss Laney is doing very good...enjoying her summer. She has been taking advantage of sleeping in (which I really can't compain, but Daddy probably could!)

There's not alot going on mediacally. We are praying for another year of improvement on Laney's spine. It has started to bother her when we are in the car. We are going to try to add some padding to the car seat. But she seems to be growing so hopefully that is a good sign that the kyphosis is trying to sraighten more. Miss Laney gained two pounds and grew two inches during the school year. So keep your fingers crossed with us. We will be heading back to Durham in October for our four year post studies. Where has time gone?

Some friends of ours had their first born child this past saturday. Laney has been so excited about Baby Brady since. The minute I told her and John that he was born she asked if he could spend the night with us...we told her it would be a while before he could do that. Laney has been asking if she can have a baby brother and sister and we explained to her that mommy can't have any more babies (due to the blood clot), so she decided that she wants to borrow Baby Brady. Congratulations Phil and Steph! We are so happy for you!

I learned late last night that a Hurler friend earned her angel wings yesterday morning. Kaylee, her sister, and her parents lived in Califonia but has family very close to us. We learned of Kaylee's diagnosis through a friend who knew Kaylee's aunt that lived is Kingsport. It's a small world. I spoke with Kaylee's Aunt Cindy on the phone one day before Kaylee's transplant. Please pray for Kaylee's family as they face the next few days. You can visit her site at www.caringbridge.org/visit/kayleekrause

Well I guess that is all for now. I updated the pictures in the photo album. If you stop by be sure to sign the guestbook...I love to read the entries.

Take Care.
Love,
Beth Anne

Friday, April 21, 2006 11:47 PM CDT

Post Transplant 3yr, 6mo

Is it just me or is it unbelievable that Miss Laney is about to turn four years old and celebrate a four year transplant anniversary? Where does time go? It seems that everyday I'm trying to accomplish the agenda for that day and already thinking about what needs or has to be done the next day. And the days go faster and faster...

Hello to everyone that are still checking in on Laney. We hope everyone is well. There is still not alot to report on but I thought is was about time for an update and some new pics. I always love new pics. The picture on the home page is of Laney and her little friend, Torri. It was taken a pre-school a couple weeks ago at Laney's "unbirthday celebration" (every child at school gets to celebrate his birthay and when it falls in the summer it is called and unbirthday celebration). Laney thinks that this was the neatest thing because she actually gets to have two themed birthday parties this year. We have it all planned out...Strawberry Shortcake at pre-school and Hello Kitty in August! Like I mentioned Miss Laney will be turning four in less than four months on August 14th and celebrating her four year "new life birthday" on October 16th! Big Girl!!

Laney had her first friend/cousin sleep-over a couple weeks ago and she had a blast. Brady and Laney had so much fun together...watching movies, eating popcarn, "camping indoors", and just being together. I think Laney love having a brother for a day. She loves Brady! (And all of her cousins!) Brady has a yucky stomach virus right now...We hope that you get to feeling better real soon! We love you!

We get to watch Laney in her first school program tuesday night. She will be a ladybug...how appropriate...I'll post some pictures. I guess that's about it for now.

Take Care.
Love,
Beth Anne

Friday, March 17, 2006 12:18 AM CST

Post Transplant 3yr, 5mo

Happy 31st Birthday John!

Hello to all. I promise that I had very good intentions to do a new journal when I last updated the pictures...but it didn't happen...Not alot has happened in the last two months...which is a good thing around here.

Laney's cold came and went and a runny nose and cough are back. I guess it's that time of year. The weather is so crazy and I am so ready for warm weather. Other than the cold, Laney is feeling pretty good...three and a half year old in full swing...but we love it. Thanking Him for allowing it to happen.

We traveled to Pulaski, TN a couple weeks ago to vist John's mamaw for her 80th birthday. It is always so good to see everybody but sad to see GranMary's progression. Laney enjoyed seeing her GranMary again and playing with all of her cousins.

Well, like I said, there has not been alot happening around here. So I guess this is all for now.

Oh, I almost forgot to mention that I was going through Laney's backpack the other day and the pre-school had sent home the roles being played in the spring program...guess what Miss Laney's will be...a Ladybug...how appropriate! I'll be posting pictures!

Take Care.
Love,
Beth Anne

Friday, March 17, 2006 12:18 AM CST

Post Transplant 3yr, 5mo

Happy 31st Birthday John!

Hello to all. I promise that I had very good intentions to do a new journal when I last updated the pictures...but it didn't happen...Not alot has happened in the last two months...which is a good thing around here.

Laney's cold came and went and a runny nose and cough are back. I guess it's that time of year. The weather is so crazy and I am so ready for warm weather. Other than the cold, Laney is feeling pretty good...three and a half year old in full swing...but we love it. Thanking Him for allowing it to happen.

We traveled to Pulaski, TN a couple weeks ago to vist John's mamaw for her 80th birthday. It is always so good to see everybody but sad to see GranMary's progression. Laney enjoyed seeing her GranMary again and playing with all of her cousins.

Well, like I said, there has not been alot happening around here. So I guess this is all for now.

Oh, I almost forgot to mention that I was going through Laney's backpack the other day and the pre-school had sent home the roles being played in the spring program...guess what Miss Laney's will be...a Ladybug...how appropriate! I'll be posting pictures!

Take Care.
Love,
Beth Anne

Wednesday, January 18, 2006 2:24 PM CST

Post Transplant 3yr, 3mo

Hello to all. We hope that everyone is having a fresh and happy start to 2006. I am adjusting a little more everyday to my new way of life...and thanking Him for allowing me to live.

Laney is feeling pretty yucky right now. I took her to the doctor yesterday because she had all the symptoms of the flu. Luckily the flu screen was negative but she has an upper respitory infection. So needless to say we are not sleeping very well. I know how I feel when my head is stopped up, muchless trying to sleep that way. Hopefully she will start clearing up soon.

Anne- I hope that you got your e-mail. Thanks for checking in on me! As for my medical front... I see the Hematologist again this friday to get the results of some more extensive blood work. We are still trying to get my blood within the range it needs to be...so I have been a little nervous over my blood being a little too thick. But hopefully soon my dosage should be figured out. I also see my pulmonary doctor again on the 23rd and hope to have some more questions answered.

My father-in-law has been back in the hospital but is now home and doing much better. He is also on blood thinner from having a blood clot. It is odd but good because I have help and advice from him (and my brother-in-law and his wife are in the medical field). Thanks guys! But Jimmy could use the prayers as well for a healthy new year.

I have been meaning to give some info on a new little Hurler kiddo who is at Duke going through transplant. She is about 70 days post and doing quiet well. I was contacted back in October by a friend who was also a friend of the little girls family. It turns out that Kaylee and her family were from California but Kaylee's mother grew up in this area and her family is in Kingsport. Needless to say I had alot of mixed emotions when I heard the news and new that the aunt of the child (who lives in Kingsport) wanted to talk to me. It broke my heart to hear of another child being diagnosed with MPS. I knew how much we were not told going into transplant and knew what we had seen. But we did talk and I learned very quickly how well this family had researched transplant. Please keep Kaylee and her family in your thoughts and prayers. I hope that her family will not mind that I list her web page www.caringbridge.org/visit/kayleekrause
I know how much encouraging words mean.

Also, I want to ask that you remember Andrew Himes and his faimly. Andrew is facing surgery sometime soon and his family could use some encouragement too. Andrew is one of the first Hurler friends that we met going into transplant. His page is www.caringbridge.org/page/andrewh

Last I want to tell you about a little magnet that I received during Christmas that stays on my fridge. I read it everyday and it really does me some good. Thanks Kristi!

A Little Morale Booster

You're really something, do you know that?
And in spite of whatever may happen in your day, you are going to stay that way:
trying and giving and living life in the best way you know how.
So keep your spirits up, and keep things in perspective.
It's going to be okay.

-Ceal Carson

Take Care.
Love,
Beth Anne

Monday, January 2, 2006 8:00 PM CST

Post Transplant 3yr, 2mo

Happy New Year to all! I appologize for leaving an unfinished update for so long, but things have been far from calm around here the past couple of months. I meant to do an update before Christmas but we have also lost info on our computer three times now. So pardon the length or rambling in this update...

First of all a report from our October'05 visit to Duke. The reports were sent to our old address and they were sent back to Duke. We still do not have all of them in.
But I can tell you that Laney did do very well with her three yr post studies. There is some comcern with Laney's height (a bigger concern for me) but Laney only scored in the fifth percentile for height. Dr. Martin and Lauren have said that more than likely Laney will not even be as tall as John and I when she is full grown...which is basically saying she is going to be pretty short (we are only around 5'3"). Thank goodness for petites! Echo, chest x-ray, CT, and PFT's are unchanged. We did get to skip the eye doctor this visit due to nedding to get back home and our schedule kept getting changed. I gave the good news from the orthopedic point of view... no back surgery (for now anyway!)...her kyphosis has improved seven degrees from 2004! This was a big sigh of relief. We received very good numbers from the developmental doctor...in some areas she scored eighteen months ahead of her age. We are so proud of our little Laney!

On November the 14th my dad returned home after be gone to Iraq for a year. It was such an exciting day despite the rain. I was really curious as to how Laney would react to him when he stepped off the bus...she gave him a few little shy smiles and before too long she was kissing on him. Papaw even had to ride home beside her and for the first couple of days he couldn't get out of her sight.
We are all so very proud of you Dad! And even more proud that you are back home with us! We love you!!

This brings us up to about the third week of November. Laney and I both caught a stomach virus. John made three trips to the ER with his first kidney stone (and we are hoping it is the last). And only a week after John's episodes I was diagnosed with a blood clot in my left lung and admitted into the hospital. Blood test have shown that my mother and father passed "a blood clotting gene" to me that made me more prone to having a blood clots. The clot was caused by being a smoker, taking oral birth control and having the clotting gene. Needless to say, I no longer smoke or can take birth conrtol in any form. Yes, John or I one will be getting fixed (hoping that it will be John!). And I will not be able to have any more children. Do we go for plan b?

The past five weeks have been alot for me to swallow but I am thankful that I am able to type this journal tonight. I have so much constantly going through my mind...I go to bed with it and I wake up with it...the fear is still there. Will the fear ever go away? Will the fear of not being here for my daughter ever go away? She needs me and I need her. I can't imagine...for her or for me. Did I take too much for granted? Was it because I really didn't try to quit smoking? I pray for strength, courage, and peace that it will all be okay. Each day gets a little easier...all I can do is do what the doctors tell me to do and I pray...

Take Care.
Love,
Beth Anne

Thursday, November 3, 2005 1:22 PM CST

Post Transplant 3yr

Hello. I promise that I will be giving some good info soon! Our computer blew up a couple weeks ago and I have not been on-line. I am still waiting for our reports to come back from Duke. I did receive word that Dr. Escolar's report was wonderful...and some of you may have already heard that Miss Laney will not be having back surgery any time soon!!! Her kyphosis improved seven degrees from last year! YEAH! The only concern with Dr. Martin was Laney's height...she is only in the fifth percentile. But like I said, I will give a better update soon.

Another good report is my dad is back in the US and should be arriving sometime within the next week or so to Tennessee. He was one of the "lucky" fifty who were chosen to stay behind in Mississippi to finish proccessing out the other soldiers.

Take Care.
Beth Anne

Friday, October 7, 2005 8:41 AM CDT

We are back from Durham...I had a few minutes and wanted to go ahead and update the pictures...I hope to have a new update sometime tonight...we have some very good news to share about Laney's studies...

Monday, September 19, 2005 1:55 PM CDT

Post Transplant 2yr, 11mo

Can you believe we are almost three years post transplant?! In some ways it feels like yesterday, where has time gone?!

Anyway, sorry for the lag in updates... it seems it has been a little busy around our house lately. First of all, I want to say Thankyou to Alicia Bennett for the cute ladybug border that she sent us. Laney had a ladybug birthday party theme and the border was wonderful to display with our pictures! But... our computer crashed a couple weeks ago and we lost alot... e-mail contacts, old e-mails, etc. ... so Alicia, if you are reading this do you still have the e-mail that you sent me with all of the links? Please send it to me if you do. Thanks.

Speaking of the birthday party... Laney had a wonderful time (even though it poured down rain and the party came inside). Despite all of the thunder and rain we made the best of it. When Laney woke up the next morning she looked at me and said "Mom, it rained on my party." I just gave her a big squeeze!

Shortly after Laney turned three John and I took a vacation with some friends of ours. Notice that I said John and I and not Laney...she stayed home with the grandparents and of course had a wonderful time but I thought I would die being away from her that long!! We went to Missouri for seven days to tube the river...it was fun but it was probably my first and last trip away from her for that period of time.

That brings us up to pre-school time. The tuesday after labor day Laney started Friends At Play pre-school. The first couple of days were rough leaving her because she wanted mommy to stay with her. But each new day is a little easier. We didn't shed one tear this morning!! I told her that I was leaving and I would be back to get her in alittle bit and she gave me five! BIG GIRL!! I can already tell that this is very good for her. She goes to school on monday, tuesday, and wednesday mornings from 9:00 until 12:00. Needless to say, this has helped getting her on a better sleep schedule.

One last thing to mention... My Dad will be arriving in Mississippi on Oct.21st!!! Praise the Lord! Mom, Laney, and I will be heading to Mississippi for a couple days of catching up with dad. We are all so excited. He will come back to Tennessee around November 14th...just in time for the holidays!!

Well I guess that is about it for now...Oh, I almost forgot to mention that we will be in Durham the first week of October for studies.

Please remember John's Dad (Laney's Poppy) in your prayers...he had surgery last friday and is starting his recovery.

Take Care.

Love,
Beth Anne

Sunday, August 14, 2005 10:20 PM CDT

Post Transplant 2yr,10mo

HAPPY 3RD BIRTHDAY LANEY!!!!

Saturday, July 23, 2005 9:34 PM CDT

Post Transplant 2yr, 9mo

Hello to all. I'm going to try this again...I sat down earlier today to type a new journal and went back to make a few corrections and lost the whole thing. Maybe this will go better. We hope that everyone is well and enjoying their summer. Laney is doing very well so there isn't alot to report (but we like it that way).

Can you believe that Miss Laney is going to turn three in less than a month? I can't...sometimes it seems like yesterday that we were living in Durham. Now almost three years ago. It makes me happy and sad to think about Laney turning three...happy that we will be celebrating this special day with a "normal" child but sad that my baby isn't my baby anymore...she's my little girl. I miss the baby days and sometimes long for the feeling of a bigger family but would never ever want to travel down the path that we did three years ago. I know that there are ways now for us to have a healthy child but I don't know if we are prepared for all of that yet. Maybe the time will be right one day. Laney would enjoy a sibling...she has been playing some imaginary games with "her sister" and "her brother"...some people say that it is a sign...maybe...

Anyway, we have a bit of news from my Dad....The 2/278th are supposed to arrive in Mississippi on Nov 2nd (and if anyone is familiar with the military things can change), but they will spend four days in MS to process out and head home to Tennessee. We can't wait to see Papaw! It feels like it has been forever since they left. So please remember our troops and pray that they have some safe few months ahead of them and a safe trip home. We are so proud of those guys!

Well my little lady is needing me so I guess this is all for now. Until next time.

Take Care.

Love,
Beth Anne

Wednesday, July 6, 2005 1:03 AM CDT

Post Transplant 2 yrs, 9mo

Hello. We hope everyone is well. Again there is not a whole lot to report but it's always good around here that way!

We do have a bit of exciting news about Laney to share. We are finally potty trained!!!! We started a week and a half ago and she just took off with it. Big girl in panties. I was getting a little worried that it was going to be real late and Laney wouldn't be attending pre-school this year but everyone kept telling me "she'll be ready one day and just take off with it!" and she did. It was relly quiet funny when it started. Laney started wanting to use the potty on a friday right before I was to attend out first pre-school meeting on Monday. Needless to say that I was very excited to go to that one! It's hard to believe that she is going to be three in a month!

I have posted some new pictures in the album of our 4th of July weekend. Laney had a blast playing with all of her cousins. Also, I copied an article from ^^Jordan's^^ web site so I hope you don't mind Carrie. I read it over and over and it brought back alot of memories and I wamted to share it with everyone. It makes you stop and think...especially for me of the little miracle that wakes me up each morning and tells me she loves me just before she falls asleep at night. Sometimes I get so depressed to think about surgeries and/or set backs we might have to face but then I think about all our dear Duke families who don't even have that to grasp anymore...my heart aches for all of us...for the word disease...disorder...You know sometimes it seems very unfair...but I wouldn't wish for anyone, anybody to experience a taste of "transplant life"...But thank our Lord for my daughter.


Some Mothers Get Babies With Something More
Written By: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants . She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gogeous that people will pity the Gerber baby for being so flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby developement chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump, and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of these mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctors uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then months, even years later, take him for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible. That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote back, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparant to curious eyes, of maybe it will be unseen, queitly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, pianting you as a hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubborness of an Ozark Mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and proector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, My cousin, My sisiter-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.


Take Care.
Love,
Beth Anne

Thursday, June 16, 2005 10:04 PM CDT

Post Transplant 2yr, 8mo

Hello everyone that's still stopping by to check on Miss Laney. Sorry for not updating sooner about our doctor visit last week but things went pretty well. We were in and out of there in an hour even with a blood draw. Laney received a good report from Dr. Kalwinsky and did very well with her blood draw...and we don't have to go back until April 2006. Yeah!

We will be heading back to Duke the first week of October for annual studies. Laney will also see Dr. Fitch again. The thought of him makes me nervous. Laney has been complaining the last two weeks that her back is hurting her. This is a main concern for Dr. Fitch. When we were there last November Dr. Fitch took x-rays of Laney's back and said that he thought spinal infusion would possibly be in the future. He said at that time that her kyphosis wasn't any worse but it hadn't gotten any better either. But he thought we were safe to wait until 2005 visit to re-check the x-rays. Now with Laney saying that her back is bothering her makes it more real that we might be facing the surgery.

Laney recieved PT this morning at the park (which she loves). We have been meeting Lynn every thursday for therapy and we can tell that it has helped Laney with some skills. (Between therapy sessions we make several trips to the park). Anyway, I spoke with Lynn today about Laney saying her back hurts her and Lynn wondered if Laney's growth has started to affect the pressure against the kyphosis. This could be possible because she looks as if she has grown a little. I am not for sure what is happening right now but I know that I am very scared for her. We know of one Hurler kiddo who was transplanted at Duke and just recently had the spinal fusion surgery and has done very well and we know one who is preparing for the same surgery. I have been kepping up with these two little guys and it scares me...the surgery is very risky. Please keep Laney (and her mom) in your prayers about this. She has been such a trooper and a fighter but it is times like this that I wish for bigger and better treatment for this horrid disease.

Enough of that stuff.... I took Laney swimming today along with my sister-in-law and my two neices. Laney loves the water. She wanted to go off of the diving boards! Maybe in a couple more years Miss Laney! She told me today that she was a fish in the water. I think I will sign her up for swimming lessons next year.

Please still remember our troops. Dad called yesterday and it looks like they will be back in the states (in Mississippi) around the first week of November. Counting the days...

Take Care.
Love,
Beth Anne

Sunday, June 5, 2005 1:41 PM CDT

Post Transplant 2yr, 8mo

Hello. I have updated the photos but there is not much new to report. Laney will see her doctor in Johnson City on Tuesday for her yearly check-up and blood work. Other than that things are pretty calm around here.

Sorry for the very, very short update but I will update more after our appointment.

Remember our troops and the 2/278th.

Take Care.
Love,
Beth Anne

Wednesday, May 11, 2005 8:33 AM CDT

Post Transplant 2yr, 7mo

Hello. We made it through our check-up visit with a few tears shed. Laney did not want to give up her bandages but after our first day without them she was showing off her boo-boos. Dr. Fitch said Laney's hands looked very well and it looked like we had success. Thankyou Lord. We will see Dr. Fitch again in October when we return for our 3yr Studies. We will do more back x-rays and see if we are going to be headed for spinal infusion surgery. Please pray for Laney that this is not a bridge we will have to cross.

While we were "hurry up and waiting" at Dr. Fitch's office we met a new friend. Nolan Ramsey was in town for his two year studies and he was at the doctor discussing his spinal infusion surgery. Please remember Nolan. He has a web site at www.caringbridge.org/co/nolanramsey Laney and Nolan had fun playing together. Laney called him "Norman", this is the name of Laney's hair dresser. I got some cute pictures of them together but just as I was downloading my camera the battery died after a few recent pics. I will update the pics again soon with our Durham pictures.

We had dinner with two ladies that we love to see while we are in town. Monday night we met Carrie Horton and had a good visit with her. I'm sure that she wondered what kind of child I have raised from Laney's behavior during dinner. Once agian Carrie, I appologize but I know you were eating up every minute of it. On Tuesday night we met Maggie Peterson, one of Laney's primary nurses during transplant. I will have to say that the behavior was much better this night. I'd say she wasn't for sure what to expect this trip even though I tried to explain that no one was going to hurt her and that she would only get her bandages taken off. She remembers way too much about Durham. Anyway, I did get some cute pictures of us with Carrie and Maggie too so I'll update those soon.

This brings us up to date with the pictures in the photo album. Mom and I took Laney to the Boyds Nursery to adopt her a baby bear this week. She loved it. Laney got to pick out her baby bear through the nursery window, name her, make bracelets for mommy and baby, have her picture made with the newest member, pick-out an outfit and wrist rattle, and push her new baby in the stroller out of the nursery. We walked out of the store and Laney said, "I love being at the bears' house!" She has barely put Molly down since we came home.

Well I guess that's all for now. Until next time...

Take Care.

Love,
Beth Anne

Remember our troops.

Monday, April 25, 2005 5:12 PM CDT

Post Transplant 2yr, 6mo

Hello. I'm sorry for not getting back to an update sooner. It really didn't take me this long to get unpacked...you know how it goes...I think I find myself finding things that need to be done.

Laney is doing very well with her surgery. I was very surprised to see how well she has done with all of this and proud of her. She is growing up so quick!

We reported to the hospital at 5:45am the morning of surgery. They took her back shortly after 6 o'clock and that's when I expected things would break loose. But once again, she is such a big girl. I gave her some medicine to ease her a little before walking her back to the operating room, grabbed Barney, Care Bear blanket, her "pappy", and we were off. Laney was a little scared as we walked back to the OR but I believe it was only from the get-up I had to wear. She took three or four breaths from the mask and I kissed her good-bye for a short while. The doctor called out around 8:40am and said everything went well and they would call for me in recovery. It wasn't long until I was needed in recovery to soothe my little baby...she was really missing her momma. Laney drank some water like she hadn't had anything to drink for days and when we tried to get her to slow down but she just balled! Then a few minutes later it all came gushing back. The nurse gave Laney something for nausea by IV but it didn't take long to realize it wasn't going to work. Anyway we finally headed out sometime after 12 noon. We went to the lobby of the CHC to wait for mom to bring the car aroung and Laney went on her merry little way playing in the children's area...she picked up a chair and moved it where she wanted it and I knew then we were doing good.

Laney slept very well that night with only having to give her pain med once. Then she was fine with just Tylenol so we loaded up saturday moring and high-tailed it back to good old Tennessee. Laney was very excited to head home and show off her bandages.

We will head back to Durham for a check-up with Dr. Fitch next week. Laney, mom, and I will head back on the 1st, go to her check-ups, hopefully visit some friends, and back home on wednesday.

Thankyou to everyone that has been checking in on Miss Laney. We appreciate the guestbook entries...they seem to brighten the day.

Take Care.

Love,
Beth Anne

****Please remember to pray for our troops...fear is still not far from our hearts...****

Saturday, April 16, 2005 8:58 PM CDT

Post Transplant 2yr, 6mo

We are home...surgery went well...she was pretty sick in recovery but doing well...I'll update more when we get unpacked.

Take Care.

Love,
Beth Anne

Thursday, March 10, 2005 8:25 PM CST

MARCH 17TH
HAPPY 30TH BIRTHDAY JOHN!!!
WE LOVE YOU!!!



Post Transplant 2yr 5mo

Hello to everyone that still checks in on Miss Laney. We are are doing well here so there has not been much to report lately. Laney continues to be an active two year old and makes us laugh more and more everyday.

Laney did get fitted for her shoe inserts a couple of weeks ago and loves to show off her purple inserts. (Purple is the favorite color now.) We are still having PT once a month and she continues to do well with this. Hopefully once the warm weather starts we will go to weekly visits to try to build some strength up in her legs and back.

Laney will go in the morning for more immunizations. It's not always fun but I'll be gald when we get these caught up so she can go to pre-school this fall. Yes, it's already time for pre-school. I can't beleive that my daughter is old enough for pre-school...I remember when our nephew was starting and that was sad to me but now it's Laney's turn. I know that she will have so much fun... she just loves being around her cousins and other children.

Also we have a surgery date scheduled for trigger finger on April 15th. We will travel to Durham on the 13th, pre-op on the 14th, and surgery the 15th. Laney will have stay in Durham for the weekend and hopefully we will get to drive back on Monday. So Shawn and Carrie (I hope you two are reading this) I hope to get to see you during our visit. I'll be in touch.

Take Care and remember my dad and the troops.

Love,
Beth Anne

P.S. Laney picked out the turtle border this time for her website

Thursday, January 6, 2005 8:58 PM CST

Update Monday January 10th
***We all know the power of prayer...I've got a prayer request for a little baby...Jacob Glen Hammonds was born to my cousin this past thursday night...he is very sick...please pray that that He gives the power and knowledge to the doctors to help Jacob...PLEASE PRAY...

***New pictures in photo album 1/10***

Post Transplant 2yr 3mo

Whew!...Where do I begin...It seems our life has been non-stop since before we left for Durham. I'm sorry for leaving you all hanging about our results from Duke.

I'll start with the week before we left...my dad came in for a twelve day leave and we had a good visit with him (although the visits are never long enough). He left to go back to Mississippi a few days before we hit the road. While we were in Durham his plane landed in Kuwait. My mother received a call from him yesterday and he was fine. I receive a call from him once a week...it's always really good to hear his voice. Last time I spoke with him he said to give Laney a big hug from Papaw and tell her he'll be home in eleven more months. Can't wait for that eleven more months. We love you very much Dad!

Our Durham trip...this time we had Dramamine...Laney always got sick during our trips, so this time we went prepared. She did very well both times riding in the car and the medicine didn't really knock her out, just chilled her out.

Laney, Susan (my mother-in-law), and I met with Shawn and Taylor Coble and Carrie Horton on Sunday before our wild week began. We had a really good visit and went to grab a bite to eat. This was the first time that Taylor had ever seen Laney and thay adored each other. Laney wouldn't leave Taylor alone. I was really glad to spend some time with Carrie and I always look forward with our visits with Shawn.

Laney had a cold when we arrived to clinic Monday morning so we were isolated the whole visit and didn't get to do much visiting. Anyway, we started out with a regular blood draw (no port this time) and Laney was terrified of the nurse and what she was going to do but when the needle entered the skin she was fine. The bad part was we found out later that day that our NP forgot to order Laney's enzyme study so we had to get re-stuck!! We saw Dr. Martin very briefly...one of those hurry up and wait days.

Tuesday was Dr. Escolar...with a cold and on medication. Laney sat through five hours and ten minutes of non-stop questioning. As most of you know, Dr. Escolar watches Laney interact with the team through a two-way mirror. By the time she finally came in the room she greeted me with, "The reason we had to keep going and going with her, she kept answering all of the questions." We said that's our girl!
I have received Dr. Esclar's report so I'll give you some of the results...

Dr. Escolar stated in her report that Laney had a cold and was on some medication during her evaluation, she stated "For these reasons, the current evaluation may represent a slight underestimate of Laney's current abilitles."

Laney was 27 months at time of evalutaion

Height and Weight 25th-50the
Head Circumference 95th-97the

Developmental (visual and language) 39 months

Fine Motor 28 months

Dr. Escolar was concerned with Laney in her fine motor area. Although she is average for her age level she feels that Laney's kyphosis of her back is causing some delay for running and jumping. We are also working with our insurance company at this time to pay for shoe inserts. This will most likely be an ongoing thing so we are trying to get heads up now.

This brings us up to Dr. Fitch...We are scheduled to have surgery some time in February for Laney's trigger fingers. This will be an outpatient procedure but will require a short stay in Durham for pre-op and following. Dr. Fitch was a little concerned about Laney's back this visit. He said it had not gotten any worse since transplant but it hadn't gotten much better either. He wants to wait and take more x-rays when we return in November for 3 yr post studies, then he'll make the call.

Last but not least, we had our appointment with Dr. Greene. Laney's eyes are still very clear and Dr. Greene said we got about the best report from him we could get.

Transplant studies make for a very long week but getting the good news is what it is all about. As for surgury, we'll get through it and help our little girl grow more.

Laney really enjoyed herself at Christmas opening all of her presents. She still asks for Santa and thinks if we go to the mall that we'll see him.

I'll end this entry with the saddness that these horrid children's diseases bring...Heaven received a new angel the day after Christmas. We came to know Brendal Snow while we were living outpatient at Duke. Brendal and her parents lived in the same apartment complex with us. Brendal had a rough road since transplant and was transplanted before Laney. We were always at clinic together. Fly free little Brendel...

Until next time...

Take Care.

Remember our troops.

Love,
Beth Anne

Thursday, December 23, 2004 10:20 PM CST

Post Transplant 2yr 2mo

Hello.

I'm sorry for not giving an update about our Duke trip yet. Things have been a little busy and I haven't taken the time to do an update. Laney is doing well (except for a little cold that started today) and did very well during her studies. I also wanted to wait for our reports to come back and I received one in the mail yesterday. I will do a good update on Miss Laney next week. Sorry so short. Please keep our soldiers in your prayers. It is tough knowing that my dad is at war and it is Christmas...

Happy Birthday Jesus!

Merry Christmas everyone!

Take Care.

Love,
Beth Anne

Friday, October 22, 2004 10:35 PM CDT

***NEW PHOTOS IN ALBUM OF HALLOWEEN***

Post Transplant 2yrs

Hello to everyone that still checks in on us! I bet you all are wondering why we haven't updated lately...well, here it goes...

Laney turned two on August 14th and had a Dora The Explorer party at her Poppy and MeMe Biggs house. She had a wonderful time playing with her cousins and enjoyed opening all of her nice gifts, although she cared nothing about the cards (she threw them over her shoulder and ripped into the gifts). This little girl is Dora crazy. Laney walks around saying, "Swiper, Oh Man!" We live for Dora around here.

My mother, Laney, and I drove to Mississippi to visit my dad for a couple of days in September. We had a really good time with dad and Laney was just beside herself with him. She wouldn't let dad get out of her sight. Also, she woke up during the night one night while we were there and wanted to know where Papaw was...she has missed him so much. It was good to spend a couple days with him and just relax but of course, it didn't last long enough. We took Laney swimming and she had a great time playing in the water with some other soldier's families. All of the 278th are getting a leave to go home and visit their families before they ship out overseas. We will pick dad up in Knoxville on the 29th and he doesn't go back until Nov 9th. We can't wait to see him but it is going to be even harder when he leaves this time because it is final. Please pray for our family and all families of the 278th.

Some of you may know that we had a two year transplant birthday last saturday. It sometimes feels like yesterday that we were in Durham and lived day to day and other days it feels like forever ago. When I sit and think about it it haunts me. That stuff is so scary. Thank God that out little ladybug has done so well. I thank God for her. She can make us smile on the darkest day and when I look at her she takes my worries away. I love you Laney!!!

We will be heading back to Duke for our studies on Nov. 13th and will head back on the 19th or 20th. I get mixed emotions about seeing that place...you come to know so many people...some children are alive and well...some children have already gone home to Heaven...it's tough.

We met a little baby in clinic right after Laney was released to out-patient. He was so little...so new...had so much HOPE. He was diagnosed in utero just like Laney. His name was Jordan Robert Horton. Little Jordan earned his angel wings at the end of September. My heart has been breaking for this family for a long time now. Carrie and Patrick are young, like John and I, and Jordan was also their first born. I can't imagine... We love you all and you are constantly in our prayers.

I also wanted to tell you all about the picture on the home page. This is John's family. His mamaw has not been doing well and we wanted a picture of all of us with her, so this was taken about a month ago. Please keep our Gran Mary in your prayers.

I'll update after our Duke trip.

Take Care.

Love,
Beth Anne

Saturday, August 14, 2004 10:40 AM CDT

HAPPY 2ND BIRTHDAY LANEY!
We hope you have a fun filled birthday today!
Enjoy your Dora party!
We love you bunches!!!

xoxoxo,
Mommy and Daddy

Wednesday, July 28, 2004 9:27 AM CDT

Post Transplant 1yr, 9mo

***New Pictures in Photo Album***

Hello. We hope everyone had a good 4th of July. Laney really enjoyed herself for the 4th with the parade (except for the sirens), family reunion, and fireworks (although she watched them from inside the house at her Great-Grand Mary's). She really enjoys being on the go except if it calls for a long car ride.

As far as the medical report with Laney, she is doing very well. We had physical therapy in the home last week and there is still some concern with Laney's spine. The PT did request for a spinal x-ray during our next Duke trip. Lynn, the PT, beleives there maybe something underdeveloped on the left side of the spine. Maybe she's on to something... we'll see. But Lynn did say that she can see that Laney has gained some good strength in her trunk within the last few months.

We are almost ready to be living in our new home (or atleast it is new to us). As I am typing this journal entry the men are finishing up our last three projects...laying tile in the hall bath, installing a dishwasher, and replumbing in the laundry room for a washer and dryer. We won't know how to act with everything complete and just cleaning and unpacking left to do.

I spoke with my dad lastnight and he seems to be doing quiet well. I miss him sooo much! This is such a tough time for the soldiers and their families, so please keep everyone in your prayers. The 2/278th ACR are still stationed in Camp Shelby, MS but their estimated "in country" date is sometime around the first of November. I pray everyday that my father will return home to us safe and unharmed. It is such a scary time. All I can do is believe in Him for my father's purpose hear on this Earth. We have had alot of people request my dad's mailing addresses so if anyone would like them just e-mail me. This would be much easier than over the phone. We love you Papaw!

Oh, I almost forgot to tell you something. Laney's birthday is right around the corner and we have been asking her what she wants for her birthday ....she replies with..."Happy Meal"! We have laughed so much that this little girl only wants a happy meal for her birthday. Needless to say, she will get a happy meal (and presents) on her birthday.

Take Care.

Love,
Beth Anne

Saturday, June 26, 2004 11:05 AM CDT

Post Transplant 1yr, 8mo

**New Pictures**

Hello. Once again I am sorry for the long wait between updates. Our life has felt like a whirl wind for the past month. We are trying to remodel the house we bought, living with my parents until we get it finished, and telling my dad goodbye. We are all doing as well as expected.

Laney is doing very well. Her speech has taken us by surprise within the last couple of weeks. She loves to repeat what she hears snd is singing songs with the actions. We started her back with physical therapy in the home to help strengthen her trunk muscles. She really seems to enjoy playing with Lynn during her sessions. It's hard to believe we will be celebrating a 2nd birthday in less that two months.

Well, we ended up telling dad goodbye on Father's Day (June 20th). What a day to send dads off to war. Please keep him in your paryers, he has a long, hard road ahead of him and so do we. Dad, if you are checking in on Laney, we miss you soooo much and think of you every minute. I pray for you to have the health, strength, and courage to do what you believe. We love you!

I will try to update again soon. Check out the pictures in the album of my dad.

Take Care.

Love,
Beth Anne

Wednesday, April 28, 2004 9:34 PM CDT

Post Transplant 1yr, 6mo

**New pictures in photo album**

Hello everyone. Not much is going on around here with Miss Laney so I'll keep this one short and sweet. We did have a visit with Dr. Castellino (Johnson City Dr) last week and Laney had her first blood draw without her port. She did very, very well and didn't even cry when the needle went in. We were so proud of her! Laney even let the nurse get an accurate blood pressure and height and weight. I am not dreading our October Duke trip as much now. All of Laney's counts were pretty good except Dr. Castellino started her out on some iron. It looks and smells nasty but Laney takes it like a big girl! All in all she is growing and learning new things every day.

I wanted to mention baby Jordan. He is doing so much better but I know he and his family can still use some strong prayers. Maybe they will be back home soon. Hang in there guys!!

I also wanted to mention that there may not be a new journal entry for a little while. (I know they are already a month apart) But anyway, we are in the process of packing up our house and moving and I know I am beginning to get very busy...it's fun with an almost two year old. But we are very excited to move and actually have a bigger yard for Laney to play in.

Everyone please continue to keep my family in your prayers. My father received his "official" orders that he will be deployed June 17th. This is going to be a very difficult time for all of us. We are also in the process of moving my mother back to Tennessee so she will be around family and friends while my dad is away. This is going to be tough on her but I know that Laney will brighten her everyday. Miss Laney brings so much joy to our whole family. I thank God for her daily. What a MIRACLE...

Take Care.

Love,
Beth Anne

P.S. I love you Dad!!!

Friday, March 26, 2004 8:44 PM CST

Post Transplant 1yr, 5mo

Hello to everyone. I'm sorry for taking so long on an update...it seems I find other things to do instead of sitting down at the computer. Hope everyone is well. I've got quiet a bit to share for this update so here goes...

First of all, Laney is doing very well. She received her second round of immunizations last friday and we've been battling a little fever every since. Yesterday and today have been good without any fevers and I pray it stays that way. Laney has been trying to talk so much latley. We have been hearing "get me mommy" and "hold me" alot. She has been saying her name for a couple months and it comes out "naney bigg". Within the last couple of weeks she has learned to say her daddy and mommy's names when asked. When Laney is asked how old she is she tells you that she is "two". I guess that is less to teach her by August! Laney is really enjoying the warm weather and tells you she wants to go "outside"...and she pitches a fit when you bring her back in, but don't they all! We are so pleased with how much she is doing but it is also sad because she's getting so big. When we checked in at the doctor's office friday Laney weighed almost 26lbs. She also cut all of her eye teeth within two weeks this last month. That's about as much as I can think of to ramble on about Miss Laney. Oh, she will see her Bone Marrow doctor sometime in April for her labs and there is no port this time...please say some extra prayers for Laney and for me that we both do ok with the upcoming visit. I guess twice a year (April in Johnson City and October at Duke) for labs is actually great but I sure do dread them!

Second, I want to mention Jordan Horton. (you can find his website link at the bottom of Laney's page) We met Jordan and his family when Laney was just starting her out-patient visits at Duke. Little Jordan was diagnosed in utero, just like Laney, and there was so much "better" hope for these two little ones. As the saying is at Duke "the earlier, the better". Well, Jordan is having some major complications and I ask that you please pray for him and his family, pray for the Duke Team and pray that they have the knowledge to help him. Carrie and Patrick (Jordan's parents) have really been through the ringer with this transplant and are in need of financial help. (you can read more about why in their entries) Jordan and his family are looking at a long stay again in Durham and their insurance is not paying for housing and travel expenses. I can tell you first hand that the housing is not cheap! ($60/night) And the cafeteria food is not cheap either. So, I ask if you or anyone you know can be of assistance to them, please do. Thankyou. Carrie and Partick, you all and especially Jordan are in my continued thoughts and prayers. I love you guys!

To end with this entry I want to tell about somebody very special to me and Laney. He is my Dad. He is the best father I could ever know. It hurts to even be typing this...he has been called to active duty with the U.S National Guards in Tennessee to Iraq. My father will leave sometime within the next two months and will be gone for 12-18 months. I can't begin to imagine life with him so far away. Dad, you are absolutely the best and I love you so much! I pray that we will all have the strength to overcome this and we will. I already can't wait for the day you will return to be with us. Laney loves her Papaw to pieces and this is going to be a tough transition on her too. Please pray for our family and for all the other U.S Military families during this dificult time. We love you Dad!

Take Care.

Love,
Beth Anne

Tuesday, February 17, 2004 10:03 PM CST

Post Transplant 1yr, 4mo

Hello to everyone that is still checking in on Miss Laney. I've not really had much to update about latley, it has been quiet boring around here...but we definetly like it that way. Laney is still doing well. She has had some minor rashes off and on but the steroid creams take care of them. It is so weird that the GvH rashes still pop up every now and then and she has been off of her anti-rejection med for over five months now. I guess the closer we get to our two year mark the less the rashes will show. Laney still has alot of her Cyclosporin hair left but we can tell it is thinning a little and even becoming lighter. When it is all said and done it will be abnormal to us to see her without hair covering her little body...she's had her Cyclosporin hair since she was four months old. John and I were talking tonight about how we couldn't believe Laney was eighteen months old. Time has flown by and to think of all she has been through in such a short period of time is amazing!

I hope everyone had a Happy Valentine's Day. John and I got to get away for the night with some friends of ours and had a really good time. Of course we missed Laney like crazy and bought more for her than we did ourselves while we were shopping. But we had fun just to get out and enjoy the day. Lord knows we need to do that more than we have the time or money for.

Well I guess I've rambled on about as much as I know right now. Thanks to everyone that checks on us. And don't forget, if you visit please sign the guestbook. I love to read the entries and it brightens my day! Take Care.

Love,
Beth Anne

Wednesday, January 7, 2004 9:17 AM CST

Post Transplant 1yr, 2mo+

***NEW PICTURES***

Hello. Once again sorry for the long wait on another update. Christmas was good here...great to be home in Tennessee for Christmas this year and wonderful to have Laney with us for Christmas this year! I know there are so many former 5200 transplant families that had the first of many "heartbreaking and rough" holiday seasons to experience, just know that we were thinking of you and you will be in our thoughts for years to come.

Laney has been doing pretty good the past month. We have been keeping her in because of the flu season right now. I know she is looking forward to the day she can get back out just as much as I am. Laney is starting to experience some bone problems (and I pray we don't have to see anymore). Last Monday week I noticed Laney's left hand, ring finger was having trouble releasing. As John and I watched, it was worse by Tuesday so we called Dr. Martin. He informed us that it could correct itself but not really any time soon, just to keep a close eye on it. Dr. Martin said he had seen this in some transplant kids and not just the Hurler one's and some did correct on their own but some had to see an orthepedic surgeon. This is something we may have to do for Laney but he said Laney was too young to try surgery to correct this at this time, but an orthepedic doctor would have a better idea on what's happening now. So please keep Laney in your prayers that this is only minor. It breaks mine and John's hearts to see this happening.

Also, we will make our first trip to the doctor to start Laney's immunizations on friday. She will receive six on friday and receive five more in two months. This will continue every two months until we finish the immunizations that we have missed except the MMR and ChickenPox. These are live immunizations and Laney cannot receive these until after her two year studies this October. I hope Laney does ok with her shots, I will probably be a nervous wreck and she'll take 'em like a champ!

Well I better go for now. Laney gets mad when I am on the computer and not playing with her. Thankyou to those of you who continue to check on Miss Laney. Please sign the guestbook if you stop by. Everyone take care.

Love,
Beth Anne

Tuesday, November 25, 2003 7:00 PM CST

Post Transplant 1yr,1mo

Hello everyone. I am sorry for not getting an update posted sooner...first of all a Duke update.

Laney did not like being back at Duke for her one year check-up, she is terrified of the doctor and nursing staff! Thankyou God for giving us the knowledge to have this child tested so early or we would be in trouble now. Anyway all test have come back with good results and no change since July, and she has a normal enzyme level of 55!! GO LANEY!! Laney had her port removed on the 13th and did very well with recovery (an hour after surgery she was up walking and playing like nothing ever happened). As for her hemorrhoid, or what we all thought was a hemorrhoid, it is just a "skin tag" and possibly could be there for life. Dr. Rice said there was no need it taking it out now since it was doing her no harm, that it would be a cosmetic issue to her later.
We saw Dr. Greene who is now seeing all MPS pateints during this visit too. He had a new video camera that records eye movement and clarity. This was really neat. Dr. Greene could only get a good look at Laney's right eye because she was moving around so much but her right eye was very clear. He said not to worry about the left eye because the right was so good that the left should be too. So all in all we received very good reports and it is a great feeling to have that port out.

During our stay in Durham I had a chance to chat with Angel Reese's mom, Shawn Coble. She came to Durham to visit for the day and we got to spend the afternoon together. I really enjoyed our visit and I hope that we can get together again before our trip back in Oct. 04. Shawn- I'm glad that we had the chance to get to know eachother a little bit. Thankyou for taking the pictures of Laney and from what I have already saw they are adorable! I really feel a strong bond to you from ^^Reese^^ and Laney. I hope to talk to you soon!

On Monday, Nov 24th, John and I celebrated our two year wedding anniversary. John- we have had a rough first two years with all that has taken place since we said "I do" (within the first six months of marriage we found out I was pregnant and were told we had a very sick little girl headed our way) but we've made it this far and that's what matters. I believe we are strong people for Him to have handed us our cards. We can continue this journey with this miracle from God and deal with each day as it is dealt. I love you, John!

Along with all of the happiness came a great deal of hearthache... As I put Laney to bed last night, I came to the computer as I do everynight to check on the transplant kids. I found out that our dearest little friend, Cameron Lee Laughinghouse, passed away early monday morning. We love you Cam and will miss you soooo much! Monica and Stephen- May the Lord be with you in your coming days. You are forever in my thoughts and prayers. You can visit Cam's site at www.caringbridge.org/nc/cameronlaugh Another little transplant fighter lost his battle this morning, Tommy Bennett. I had the chance to finally meet him while we were in Durham this past time. John and Alicia- you two are very strong people. I can't imagine. I'll be checking in you guys. You can visit Tommy's site at www.caringbridge.org/ca/bennettboys

Well I guess I need to go for now. I wanted to put some updated photos of Laney in the photo album but I will be sure to bo back and finish going through the rest of the transplant pictures later. May everyone enjoy this Holiday season. We have so much to be Thankful for. Take Care.

Love,
Beth Anne

Sunday, November 2, 2003 10:56 PM CST

Well I've been busy today trying to get things gathered up for our trip. Of course I had to make a trip to Walmart...I feel like that is my second home. Anyway, I have never been a very light packer and with my mom, my mother-in-law, Laney, and I it isn't going to be easy to pack the van. But I love and very much appreciate all the help from Nana and MeMe! You two are the best! Sometime Thursday morning we sould head out to Durham.

Here's the schedule:

Friday, Nov 7
9am Clinic for labs
10:15 Peds Surgery Clinic-3rd floor CHC
1:15 Pre Op Screening-3rd floor CHC

Monday, Nov 10
9am Clinic for labs ; See Dr. Martin
1:30 ECHO-2nd floor CHC
2:00pm PFT's (pulmonary function test)-2nd floor CHC

Tuesday, Nov 11
Dr. Maria Escolar and team

Wednesday, Nov 12
8:15am CT scan
10:15 Dr. Greene-Ophthalmologist

Thursday, Nov 13
Peds Surgery-Laney will be getting her port removed and possible her hemorrhoid. (Laney got a little hemorrhoid during transplant from the morphine pump she was on.)

So from this (Thursday) we are not for sure when we will head back to Tennessee. Depending on how the surgery goes and if they take out the hemorroid we don't know how long we will need to wait for her little "bunky" to heal and be able to ride in the van (you know that would have to be sore!)

Please keep Laney in your continued prayers that all goes well at Duke. This will be a very tiring week for her! Also please pray for a safe ride to and from Duke and an easy surgery with a quick recovery. We all will need some extra strength.

Oh, we will be visiting with a couple of friends and PBMT families during our stay so if those of you should need to get ahold of us my cell number is 423.754.4279. We will be staying at The Forest apartments but I am not for sure of the apartment number or the phone number yet. Can't wait to see you guys!

Take Care.

Love,
Beth Anne

Thursday, October 30, 2003 7:54 PM CST

***NEW PICTURES ADDED 10/30/03***

All is well here...packing for our Duke trip. I will try to update Laney's schedule later tonight when I have time. Thanks for checking in and if you visit her site please sign the guestbook. Talk to you soon.

Take Care.

Love,
Beth Anne

Saturday, October 18, 2003 11:37 PM CDT

Post Transplant 1 Year!

***NEW PICTURES ADDED 10-27-03***

Hello to all. We've had a pretty exciting week around here...celebrating official one year old new blood with the enzyme we needed! We took Laney out to dinner thursday night to celebrate. She just loves to get out and see what's happening outside our home. Laney is very well behaved just about all the time when we are out. We joke around and say that she is "nosey" because she stares and watches people all the time! It's cute.

Anyway, we took Laney to the doctor in Johnson City on friday just to have her port flushed. Her port has to be flushed once a month and since our Duke schedule got put off until November 7th it would've been seven weeks by time it would be flushed...and we need all of those big labs out of it in November. She did very good except not letting me put her Emla cream (numbing cream) on her before we left. So we had to have a straight stick. OUCH! I am so thankful she has done so well with all of this and with transplant happening at such a young age. She is getting old enough now to realize when something is going on or aboout to happen. I don't see how some parents have done all of this with an older child...but you do what you have to do. Sometimes I feel as if I will never be able to thank God enough. We are so blessed!

I will post Laney's schedule for Duke soon. She will be getting her port removed the last day we are there. YEAH! It makes a very long week but I love seeing all the old faces. I really miss talking with all of the transplant families.

Take Care.

Love,
Beth Anne

Tuesday, October 14, 2003 8:49 PM CDT

Post Transplant Day 363

Hello to all. As I type this journal entry my mind is racing of thoughts from this last year. On thursday, October 16th, we will celebrate the one year anniversary of Laney's "new birthday". One year ago we sat in a hospital with our eight and a half week old daughter receiving chemo and ATG, waiting for transplant day. Now we here, a year later, with a miracle right in our own hands. I can remember the days just thinking if we would see Tennessee again and would Laney survive transplant and come back with us. Sometimes I thought it would never end. I would sit and try to picture our house with Laney playing and trying to live a "normal life"...But we are very thankful for our short stay compared to some familes. We were in Durham for 134 days and some familes were there 6mo, 9mo, and even a year. I can't imagine. We have been so blessed over this last year.

It was a pretty rough week last week. My heart just breaks...baby Noah passed away last tuesday. (caringbridge.org/hi/noah) I check on a bunch of kiddos everyday and Noah was one of them. I get so attatched to these kids just knowing what they are going through and reading it in their journals. We have lost so many kids over this past year and I still have to wonder why. I know there is a reason but I still want to scream and kick everytime I hear it happen again and again.

We did have some good news this weekend. Jordan Horton flew out of Durham saturday morning on his way home! Way to go Jordan! Carrie and Patrick, we are so happy for you guys. We could sing and dance right along with you. I know it is a big adjustment coming home with new doctors to greet, medicines to arrange, and therapy to get started, but hang in there. We love you all!

Laney is doing really well. She has learned to take 8-10 steps by herself this week and drink out of her sippy cup. YEAH Laney! She has begun to babble all the time and her new word of the week is "elmo". Laney now knows how to imitate a cow, a dog, a monkey, and a bee. She continues to amaze us.

If you visit Laney's page please sign her guestbook. We love to read the entries. Take Care.

Love,
Beth Anne

Sunday, September 28, 2003 2:49 PM CDT

***NEW PICTURES ADDED 10/02/03***

Post Transplant Day 349

Hello to all. Sorry it has taken a couple of days to get back to my update. I believe every night when Laney goes to bed I find something else that needs to be done around the house. Sometimes the days just aren't long enough.

Laney is doing really well about being off of her cyclosporin. She has some rash on her hands and feet but the steroid cream seems to be taking care off it for the most part. So we'll keep on praying that all continues to go well and that hair will be slowly fading away!

I had not had a chance to update about our doctor visit from the 19th...let's just say it was not pleasent. When we returned home in late January from Duke, I threatened to take my daughter back to Duke to stay for one year post transplant due to the new doctor and staff here. But we didn't (of course), we stayed in Tennessee and hoped for the best (and I bit my tongue ALOT). As a matter of fact, I asked Dr. Martin if he had his bags packed to come back with us when we had our 6 mo. post studies in April. He just laughed! Well, the doctor got better and the staff seems to be getting worse!

On friday it took the nurse a very, very long time to get Laney's port accessed. Laney has always been very good about getting her port accessed and has rarely even cried with it. I put a numbing cream on her port before we leave for the doctor so she never even feels the needle. Well friday she cried her eyes out and mom and I had to hold her down for about fifteen minutes. She cried and I cried. It was awful! Even after her port was accessed and we could hold her she still cried. I asked about ten or fifteen times if the needle was in good and their reply was "oh yeah, it draws and flushes good". They started her two hour infusion of Pentamidine and about the last thirty minutes of it I finally got her to sleep. I napped beside her nad we woke up right as the infusion was through. We were soaking wet...guess with what?...Pentamidine and blood! Boy that needle was in good! I was very ticked off by that point and I won't mention what I told the nurses. This was the worst day at the doctor we have ever had. I've said it before and I'll say it a hundred times, THERE IS NOTHING LIKE DUKE UNIVERSITY MEDICAL CENTER!

We were supposed to be going back to Duke on October 18th for Laney's one year studies but all of her appointments cannot get in that week so it will be he first or second week in November. I'll will post as I find out more.

There are a couple of Duke families that I would like for you to keep in your prayers. Jordan at www.caringbridge.org/il/jordan He and his family have been at Duke for nearly a year now...that's way longer than the 100 days that was expected. I know what it was like just being there 101 days and I think of them so much. Jordan has Hunters Syndrome (MPS II). Hang in there Carrie and Patrick. We love you guys! Also, Tommy at www.caringbridge.org/ca/bennettboys He and his family have also been there for a year and they have three children with Sanfilippo (MPS III). Their youngest child, Tommy, just had his third transplant and isn't doing very good. Last but not least is little baby Noah at www.caringbridge.org/hi/noah He is a little baby with Krabbe's disease and is having some difficulty. He is back in the PICU and could use some powerful prayers too. Please keep these families in your thoughts and prayers.

I am going to be putting some pictures in the photo album of Laney from birth through transplant so be sure to check them out from time to time. It may be a day or two before I put the first few on and I'll try to change every couple of days.

Take Care.

Love,
Beth Anne

Tuesday, September 23, 2003 12:03 AM CDT

***NEW PICTURES ADDED 9/23/03***

Post Transplant Day 342

All is well here. I will try to update tonight when my side kick goes to bed.

Beth Anne

Sunday, September 7, 2003 9:53 PM CDT

Post Transplant Day 326

Sorry for the long wait on an update...you know the saying, 'No news is good news'. There has not been much going on around here lately and I have no idea what to write when it gets that way. But beleive me, it's nice when everything flows very smoothly!

Laney is doing very well. She had her last dose of Cyclosporin (hair medicine) last Sunday morning. She still has the fur all over her body but we can tell it is thinning a little. Dr. Martin says it will take a couple of months before it is completely gone.

We received Laney's immune studies back this week. Our daughter is greatest little miracle from above! Laney's immune system is fully recovered! YEAH! As of now she has the immune system of a newborn baby and can still catch anything but this is still wonderful. She will start getting her immunizations in three months. Duke requested she be off her of Cyclosporin for at least three months before the immunizations start because the Cyclosporin suppresses the immune system. It will be nice not having to worry as much about all the germs.

We will go back to Duke the week of October 20th for Laney's one year studies. These studies will consist of Pulmonary Function, Echocardiogram, Chest X-Ray, CT Scan, and loads of bloodwork to test her enzyme level and immune system. During our visit Laney will probably have her Port removed in which she will be put to sleep. So keep her in your prayers that she will do well. After this first year we will have to visit Duke once a year (every October being the month to mark her transplant year). After the first five years we will visit every other year for her lifetime. Laney will continue to see her doctor in Johnson City every three months instead of every five weeks. She is doing so well!

I want to say 'Thanks' for all of you out there that check on Laney. It really means alot to our family. So many have prayed for her and that is definetly what has gotten her this far. We still need prayers sent our way everyday. It is really nice to see the guestbook entries from some of mine and John's old friends! So, if you visit her site don't forget to sign the guestbook, it brightens our day!

Take Care.

Love,
Beth Anne

Thursday, August 21, 2003 9:23 PM CDT

Post Transplant Day 309

***NEW PICTURES***

Well we've had a pretty exciting week. Laney had a good birthday with two parties. It was so exciting getting to invite friends and family to a big birthday celebration! Laney enjoyed playing with her toys as her daddy and I opened them. We have so many toys at our house now that I think we definetly need a bigger house. When Laney was born we started growing out of little house very quick.

We went to the doctor last Friday to get IV meds, but Laney only had to receive Pentamidine. Her IgG level was still at 597 even after five weeks. Laney needs this med only when her level is <400. We will go back on Sept. 8th to check that IgG level again. Laney is being weaned off of her Cyclosporin (hair medicine) so Dr. Castellino doesn't want her level to get too low. Laney's red blood cells were higher than they have ever been on her own. Waiting five weeks for lab draws really was the key. Dr. Martin assured me this was the problem with her hemoglobin dropping and he was right! We will be starting our sixth week on Monday of weaning Cyclosporin so keep Laney in your prayers that all continues to go well and we will be off of that nasty medicine in no time!

On Tuesday we met with a feeding specialist about Laney's eating problem (or should I say her not eating problem). He gave some good suggestions to start with but it is still going to take a while. Dr. Pennington believes Laney's problem stems from all of the oral meds she has to take, a night in the PICU at Duke, chemo, and her allergic reaction to rice flour. The only thing Laney will really eat by spoon is ice cream (can you blame her), and she would eat this all day long if I gave it to her. She will also eat cherrios all day but that is about it. But hopefully the feeding therapy will help.

We have been very blessed this week with very good news. Our prayers were once agian answered! God is good! John reveived a job offer for TVA, John Sevier Plant. YEAH! He will sart is new job training on October 8th. He has been working on this job for a long time and we are all so happy for him, it is a real good job. Way to go John! Laney and I love you for working so hard.

Well I guess I need go and get some snuggles from my daughter. Please keep all transplant families in your thoughts and prayers. Those who may still be a Duke or have gone home, some without their children, need prayers sent their way.

Take Care.

Love,
Beth Anne

Wednesday, August 13, 2003 11:58 PM CDT

Post Transplant Day 302

HAPPY 1ST BIRTHDAY MY LITTLE MIRACLE!!!!

Today we shall celebrate a big day. I want to thank God for allowing Laney to be here on this special day. Transplant was and still is a very scary thing...We have seen so many children, that have fought so hard, become angels. Some of these children we met during transplant and some I have read about after,but it breaks my heart to hear the sad news. But now they are dancing in Heaven! I thank God everyday for how well our daughter has done and without all of the prayers that have been sent our way, I don't know what we would've faced. Please keep Laney in your continued prayers.

Laney, may you let your little heart shine today...it is your day! I love you so very much and I can't imagine how my life was before you...mommy

Take Care.

Love,
Beth Anne

Monday, August 11, 2003 12:17 AM CDT

Post Transplant Day 299

All is well here. We've not had much going on around here, so there hasn't been much to update about. We have a big week this week...Laney has her first birthday to celebrate on thursday! We are planning a small party with the grandparents at Laney's Pop and Meme's house on thursday night. On saturday we are having a big party with family and friends. My father's side of the family is very big and with the Alvis', Lane's, Flora's, and Biggs' there are about 120 people invited (except for anyone who is sick or if a child has had a MMR of Chickenpox vaccine within the last 30 days - we asked that they not attend). Laney still cannot be around a child that has had these types of vaccines because they are live vaccines and the child actually carries it for up to 30 days.

Laney will go back to the doctor in Johnson City on friday to get her IV meds. We actually had a five week break this time! YEAH! Laney is doing very well with being weaned off of her Cyclosporin. When we saw Dr. Martin at Duke in July he started weaning her "hair" medicine. If all goes well we should be completely off of it in three more weeks. YEAH again! Some small children that see Laney get scared and curious of her hair all over her body, but soon it shall be GONE!

Well, I better go for now. I'll try to update again this week. Please continue to pray for Laney as she continues to be weaned off of her medicine. She can still have some mild GVHD (graft vs host disease) show up. Please keep all other transplant kids and their families in your thoughts and prayers. If you visit please sign her guestbook, I love to know that people visit her site.

Take Care.

Love,
Beth Anne

Monday, July 28, 2003 7:55 AM CDT

Post Transplant Day 285

***NEW PHOTOS ADDED FROM DUKE VISIT***

Well, we are home from Duke. We returned home on Thursday with very good reports. It will be about four weeks before her immune studies and enzyme level come back ,but I'll tell you how everything else turned out.

On Monday, Laney had her Echocardiogram and this came back with no sugnificant change from the study in April. She did pretty good with this although she had to be sedated and the nurse gave her the medicine so quick that she got sick all over me! Oh well...the day continues. We went to the 4th floor for lab draws and a visit with Dr. Martin and Lauren but Laney wasn't in the best of moods. Later that afternoon we had to see a new Optomologist, Dr. Greene. He is now seeing Hurler kids. Laney did not like Dr. Greene! He had to dilate her eyes, take pictures of her eyes, take pictures of the retina, and test the pressure in her eyes. Needless to say she was not happy when he finished...she sat up in my lap and gave Dr. Greene three big raspberries! It was real cute!

Tuesday was Dr. Escolar Day. All of you Duke families know what Dr. Escolar means...five to six hour visit. We arrived at eight o'clock and we were out of there by ten o'clock. WOW! Dr. Escloar walked with me to the front door once when Laney was having her range of motion tested and I didn't want to see the struggle. She said she could've done more with Laney but it would've been a waist of everybody's time. This is so wonderful that Laney is doing so good. Thanks to all of the prayer warriors out there!

Wednesday started out with a CT scan and the findings from this stated, "Stable radiologic appearance of the brain since 4/23/03" Laney did o.k with this although we all wanted to try to get it done without sedation. She had to be held down but only for about two to two and a half minutes. Next was a chest x-ray and the findings from this were "No acute cardiopulmonary disease". After the chest x-ray we were off to see Dr. Martin and Lauren and to get lab draws. She was in a little better mood for them this time since she hadn't had to be sedated. After a 4th floor visit we had PFTs (pulmonary function test). Laney did pretty good with this even though she didn't make it to 100ut she was almost there. Then we went to the hotel to start packing.

Wednesday evening we went to see Carrie, Patrick, and Jordon Horton and Jordon's grandparents. Laney wanted to grab a hold of Jordon so bad. She doesn't understand what 'easy' means yet. We pray for an quick recovery for Jordan to start holding on to red blood cells a little longer. I hope Jordan can see his his real home that he has never seen very soon! Carrie and Patrick, you guys hang in there and we'll thinking about you.

Other than all of that, things are pretty calm around here and believe me, it is nice that way! Laney has a new tooth so that makes two now. We have a very big birthday around the corner and we are going to have a big celebration. This little girl has been through alot this year. So much to be thankful for.....

Take Care.

Love,
Beth Anne

Friday, July 11, 2003 11:09 PM CDT

Post Transplant Day 268

Things are looking pretty good around here. We had a seven hour trip to the doctor today...everything is o.k., but it just turned into being a long day. Dr. Kalwinski, Dr. Castellino's partner, saw Laney today. He said if it checked out with Dr. Martin Laney would only need to be seen once every five weeks! WOW! One of her IV meds she gets about every six weeks and the other she gets every four weeks. He thought if we could meet in the middle of the two there was no need in going every other week. Laney's Hemoglobin is holding steady. Please pray that it will continue to be good.

Laney's Pop (John's Dad) came home from the hospital today. He is doing much better but still needs alot of rest because he is very weak. We are very glad to have him back at home!

Laney has some learned to say some new words within the last week or two. I can't remember if I have mentioned what she already has said so I'll just tell all of them...Bye (first word), Momma (before DaDa-we all mothers love that), DaDa, Bobble (bottle), Papaw (it isn't very clear but you can tell what she is wanting), Bi (for bite), and Bu (don't know how to really spell this sound but it is for book). I think that is about it. She tried to make a mooooing sound the other day for my dad, sure that was cute. Laney can also clap her hands, wave Bye-Bye, give you a kiss (the tongue straight to the face), and blow a kiss without the hand motion. It is so amazing that my daughter has learned to do all of these things and when I first found out she had Hurler's I thought I would never see these things.

There are alot of children that have gone through transplant and have received their "Angel Wings" to a better place. Some were so sick and now they feel no pain, no sticks, no medicines, nothing but absolute Heaven. I can't begin to imagine what their moms and dads feel each and every day. I pray everyday and thank the Lord for the marvelous wonder of my daughter. Treat each day like there is no tomorrow. I wonder every day just how I could love my daughter any more than the day before , but I do. It grows every day! Please pray for the families that have lost a child, they need support all day, every day.

Thanks for checking on Laney and if you visit her page please sign her guestbook. She will enjoy it one day. Take Care.

Love,
Beth Anne

Sunday, July 6, 2003 3:48 PM CDT

Post Transplant Day 263

Well, where do I begin...John's dad is doing a little better. He has Pancreatitis and is still in the hospital in Knoxville. The doctor says he may be home in about 4-5 more days but will take weeks and weeks for recovery. As most may know that Pancreatitis can be fatal but we were lucky to find out on Thursday that Jimmy has a mild case. He has a little difficulty breathing from the fluid around his lungs but hopefully that will be going down. Please continue to keep him in your prayers.

Laney on the other hand is doing alot better with her cold. We beleive that it is all gone. She finished her last dose of antibiotic on Saturday morning. No cough and no runny nose...YEAH! Laney goes back to Dr. Castellino on friday for her two week check-up and to get her two IV meds. We will be back to Duke on July 21st for her nine months post check-up and will stay until late Wednesday(July 23rd) afternoon. I will post how that goes. It is nice to see all of the old faces but it wears us out! We usually start about eight o'clock in the morning with appointments and get back to the hotel sometimes around four of five o'clock that afternoon. That is a very long day for an eleven month old. All you Duke families know exactly what kind of long days I'm talking about.

Laney had a very big first 4th of July this weekend. We took her to the parade and then we had a cookout at my brother's house and then off to watch the fireworks. I was so excited to see what Laney thought of the fireworks and about two minutes into them she watched and fell asleep in my lap. I just knew I would have to run in the house when the very loud ones scared her and she slept through them all! On saturday we had our Lane family reunion (you can guess this is where Laney's name came from). That was the first time most of the family had gotten to see her.

Well I need to go change a diaper. Keep Laney's Pop in your thoughts and prayers. If you visit please sign her guestbook. Take Care.

Love,
Beth Anne

Wednesday, July 2, 2003 7:54 AM CDT

Post Transplant Day 259

I'VE GOT A VERY BIG PRAYER REQUEST...JOHN'S DAD IS VERY SICK RIGHT NOW AND HE NEEDS ALOT OF PRAYER. I WILL UPDATE LATER...

Saturday, June 28, 2003 9:23 PM CDT

Post Transplant Day 255

Sorry for the long wait on a new journal entry. We have been a little busy around here. Laney has a little cold but she is feeling much better now. She started getting a cough on Tuesday and by Wednesday it became congested. I called her local pediatrician to get an appointment and we snuck through the back door that afternoon. Laney's immune system is returning pretty quick but I am still very afraid for her to be around a sick child for a split second. At Dr. Calendine's office we sneak through back door and go straight to a room to avoid the waiting room. Anyway, he gave her a breathing treatment while we were there, put her on an antibiotic, and gave her something for cough and congestion. He said her lungs sounded very good and clear.
Dr. Calendine is a good pediatrician but we don't get to see him much because right now her primary is in Johnson City. I suppose all of that is soon to change...we are almost nine months post transplant! Yeah!

Laney also saw Dr. Castellino yesterday (Johnson City doctor). We only had to have blood drawn for counts and wait on on the results. Laney's hemogobin had been kind of dropping over the last couple of months but it was up yesterday. Dr. Martin felt like it wasn't going to be a problem. He said some babies hemoglobin tends to drop around six months of age and eventually will rise. Well, Laney was transplanted at nine weeks and her hemoglobin started dropping around seven months post transplant. So, her "new blood" would have been around five months old. But please pray that her blood will continue to hold it's own.

We have been referred to a feeding specialist , Dr, John Pennington, for Laney's feeding issues. She will take anything as long as it is finger fed. Dr. Martin feels that her mouth and tummy have been so upset from transplant that she just doesn't really care for new textures. But we can't get in until August 19th. Laney will be a year old by then (August 14th). That is unbeleivable! She has been through so much in this first year. She is my little miracle from God.

Oh, I just about forgot to mention that Laney has her first tooth peeking through. She has been a little irratable but overall I couldn't ask for a better child. It is amazing that she is so well behaved after all of this. Mommy loves you very much Laney!!

Happy 4th to everyone!

Love,
Beth Anne

Sunday, June 8, 2003 8:46 PM CDT

Post Transplant Day 235

Hello Everyone. Laney has had a pretty good week, except for the fact that we are still no closer to eating more solid food. Laney does not like baby food at all. She still has no teeth so we still have to be careful of what table food we can get her to take. Hopefully it will get better.

Laney has a doctor's appointment on Friday, June 13th with Dr. Castellino (JohnsonCity). It is time again for IVIG, which is an IV med Laney receives about every six weeks to boost her fake immune system. Also time for pentamidine, which is an IV med Laney gets to keep pneumonia away. She receives this med once a month. Laney did not tolerate the oral medication given for this so we went back to getting IV. So, it is going to be a very long doctor's visit. It's really good to be back home in Tennessee , but there is nothing like those doctor's at Duke!

Please say a little extra prayer for two PBMT kids (pediatric bone marrow transplant) that are still at Duke. Baby Jordan (caringbridge.org/il/jordan) and Baby Noah (caringbridge.org/hi/noah). These strong little boys are fighting very hard and they and their parents need a little extra support and prayers. Please remember them.

Thankyou Carrie, Patrick, and Jordan Horton for being the first to sign Laney's guestbook. If you visit Laney's site please sign her guestbook.

Pictures will be added to the site soon.

Friday, May 23, 2003 11:31 PM CDT

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