History

Saturday, March 14, 2009 4:25 PM CDT

It has been a long week! We had some nice warm weather last weekend which was nice, but then it quickly chilled down enough to remind us that winter is not over yet!
By Tuesday morning Tabitha was running a 103 degree fever and we were on our way to the pediatrician! "A little Upper Respitory Infection, A little Bronchitis, and a little Pnuemonia were his words before we left!" He went ahead a prescribed some antibiotics which was good and the next day Tabby seemed to be feeling a little better.
Today she is still very congested and still has a horrible cough. Atleast the fever is gone!
So, needless to say, we have been locked up in the house all week! I did get to go the grocery store yesterday which seems to be a treat for me these days!
Atleast we know spring is around the corner and that is something to look forward to!
I hope each one of you are doing well!

*We are going to try converting to the "new Caringbridge". This should make it easier for you to sign into to Tabby's page, and have more upgrades, graphics, etc.
The new site will be http://www.caringbridge.org/visit/tabbypaige
We will leave this site up for awhile while we make the transistion!

Saturday, March 14, 2009 4:25 PM CDT

Sunday, March 1, 2009 12:06 AM CST

Tabitha is doing very well these days! We are staying very busy with school, therapies, doctors' appts., and all of Bradley's activities too!
We are all very ready for Spring and the warm sunshine so we can be outside more!
We recently ordered Tabitha her very first "special" swing! We are excited to get it since Tabby loves to swing at school and at the park! I can't wait to post pictures of her in it!
Generally, things have been going very well for her with the exception of daily grand mal seizures. Somedays she doesn't have any at all, but just about everyday they make an appearance. We have a neuro appt. coming up soon and we will discuss further then. Micheal and I are hesitant about changing anything with Tabitha's seizure regimen because sometimes change makes things worse. And even to spite the seizures she has been having lately, her activity is actually less than what we have seen for quite some time.
So I guess that is about it. We always appreciate all of your prayers for our family and we ask that you pray for all of Tabby's little friends. Some of them have been having alot to deal with lately, and they are all so very special....just like my Tabby!

Thursday, February 12, 2009 5:56 AM CST

Tabitha is doing great!
We have recently had appts. with orthopedic and endocrinology doctors and both appts. went well!

Tabitha's scoliosis is only 10urviture now! That is awesome news! Her hips looked fine, no changes!

Her thyroid (endo)doctor wants to try to wean her from her thyroid medication in the next 6-7 months! Her thyroid labwork looked great!

I love reporting good news!

Happy Valentine's Day!

Sunday, February 1, 2009 8:33 PM CST

http://www.wztv.com/newsroom/top_stories/wztv_vid_5012.shtml
*Copy and Paste the link above*

Tabitha is doing great! She is growing up so fast and it is hard for to believe at times the little girl she is becoming! Everyday I am in awe of her communication and determintaion. It is hard for everyone to see, and that bothers me. I want everyone to see the things that I see. I want them all to see her milestones, they are so small, yet so big. But I feel often that only us in the house see these things in the fullest capability. I sruggle with it....I want others to see so they know I am not crazy...and then other days I do not care if anyone sees it. I know what she can do and that is all I need. But the fact that she is getting "graded" at school and at therapy on what only "they" can see, bothers me. Tabitha doesn't even like some of these people, and even if she does like them, they are not patient enough for her response.
I know that if it were their child, they would be more patient. These people rush through there activites because they have a time limit, or who knows what else, but they do not give her enough time. Maybe they do not know she needs more time? I tell them, and tell them....but I feel like a broken record. What do we need? More than one teacher? More than one therapist? Probably so, but the fact is, it's not gonna happen anytime soon. Not with this economy and not with the high demand. I guess we need more people to work with children like my Tabby. Why can't we have Miss Nicole's forever? And more time with Miss Nicole (early intervention) would have done my Tabby good. I truly feel this.
I am on a soap box tonight.....what can I say? This has been on my mind for awhile, and my daughter is not getting any younger. I know the older she gets, the harder it will be to get services for her. But I refuse to belive this is the best there is! Maybe the best she can get, but is it the best there is???? Why aren't all children like her entitled to the best there is? Regardless of fortune, race, creed, religon, or whatever!
As her mother I can't sit and watch the days go by knowing that later I will regret not trying harder. I want no regrets. I want Tabitha to grow up knowing that we did everything we could do!
I just didn't know how hard it would be......
Sometimes, just when you feel comfortable on your journey, you realize that you have just begun.

Friday, January 9, 2009 9:11 PM CST

Tabby will be on tv tonight! The tv crew was here this afternoon to do a story on Tabitha and her artwork for people with epilepsy! This artwork has been featured in the coffee table book for the Expressions of Courage Art Contest done for people with epilepsy!
We are so excited!
Hopefully the story will turn out well and be inspiring to everyone who sees it!
We are so proud of our little artist and the message she has to share with all of us!
I must say her brother said some very nice words that I hope will be aired! he is quite a special kid also!

http://www.wztv.com/newsroom/top_stories/wztv_vid_5012.shtml

January 20,2009
Inaugaration Day
Wow! The response has been incredible! Tabitha is becoming a success with her special artisitc talents!
We thank each of you so much for your love and support! Several people have inquired about purchasing some of Tabitha's artwork , so we have made some of it available to sale. You can contact me directly by e-mail if you are interested. The proceeds of her sales will benefit 2 of the charities that are closest to our hearts. (Although there are many and we hope to donate some proceeds to them in the future!).
Medically, Tabitha has been great. That's one reason I have not commented on her health lately....she is doing fine! She is officially off the Ketogenic Diet and eating great! We are still working on the drinking part, but she is eating fairly well. She is loving cheesecake, mashed potatoes and yogurt mostly these days! She is becoming more and more interactive with us as the days go by. We all have our own "little conversations" with her now that it seems only us in the house understand.
All we need now is some warmer weather so we can go outside! Cabin Fever!!!!!

Friday, December 26, 2008 9:44 AM CST

HAPPY BIRTHDAY TABITHA!

Five years ago a little girl was born that would change my life forever. Little did I know how she would teach me things that many would never learn. Show me love that many have never felt. Not only me, but everyone who ever meets her.

I love you so much Tabitha Paige! Happy Birthday Little Puddin!

Monday, December 22, 2008 5:03 PM CST

MERRY CHRISTMAS friends and family!
Yes, I realize the picture above is from last year, but it is so sweet, isn't it?

Hope you have the most blessed holiday ever!

Wednesday, December 17, 2008 7:03 PM CST

Well, Tabby is still a little 'ole snaggle tooth!
I can't see her permanent tooth coming in yet, so I hope it does soon and she didn't pull it too soon!
She is doing great!
Next week I will be writing about how I can't believe she is turning 5!
My baby girl really isn't a baby anymore!
Wow-

Sunday, December 7, 2008 1:25 PM CST

My babygirl is growing up!
I can't believe I am updating to tell you that Tabitha lost her first tooth last night!
She pulled it herself! And then....she swallowed it! I was in the shower, so she was in the living room with her Daddy. He got up to go into the kitchen to fix her meds and he said when he went back into the living room, Tabby's face was covered in blood! He was petrified! Then he figured out she had lost a tooth. I got out of the shower and he was sitting in the floor holding his babygirl crying. I didn't know what was going on!
Then when he told me she lost her tooth of course, I cried too!
What is it about your baby losing their first tooth that makes you cry????
The fact that they're growing up?
Not a "baby" anymore?
The fact is, that baby tooth symbolized many things to us. Our baby...our LAST baby.
Tabby has so many slowly developed/developing traits that when something "normal" happens, it throws us off!
How can be be growing up already?
It's not time for her to be 5 in 2 weeks!
Yes, I'm afraid it is.....I'm afraid it is.

Wednesday, November 26, 2008 12:33 AM CST

HAPPY THANKSGIVING!

Although the last few weeks have been very rough, we have so much to be thankful for!
Tabitha is feeling alot better, but still very sick. I took her back to the doctor yesterday, and we went over to the hospital for some chest x-rays. She has pnuemonia on top of the nasty stomach virus she has had! My poor girl! Even to be so sick, she was full of smiles all day yesterday which I took as a good sign that she was atleast feeling better, even if she has developed pnuemonia in the process!
Needless to say, we will be spending Thanksgiving at home alone this year, which is not something we are happy about, but we have to keep Tabby well, and getting her out around a bunch of people would only put her health at jeopardy right now.
So we are thankful to atleast be at home. To have a home to BE in, and to not be in the hospital.
We are thankful for every smile...from Tabby and her brother. (and personally, her Daddy too!)
For although I am sad to be away from my family this Thanksgiving, I am so blessed to be spending it with the 3 people that make ME smile everyday. The people that complete me. The reason I get up and go everyday.
I love them all so much and thank God for them everyday, but especially this Thanksgiving Day.
To all of you, I hope you have a Happy Thanksgiving and I pray for you also. I pray that you can experience the joy and love that I have, if you haven't already.

HAPPY THANKSGIVING!

Oh yeah-Congratulations to my little artist on making the front page of our local paper this past Sunday! They did a beautiful story on Tabitha and her artwork for Epilepsy! I am so proud (and thankful!) that my daughter can bring awareness to something that I feel so many people don't know enough about!

Wednesday, November 19, 2008 1:54 PM CST

Tabitha is still pretty sick. Her doctor says this thing just needs to run it's course.....sheesh, how long is this course, Doc?
Right now we are just praying she will be well enough to have Thanksgiving with our family.
She is still very tired and lethargic. Still running a fever 99-101 degrees. And oh yeah...still having that diarrehia too! (eew!)
I am trying to stay positive and not get paranoid but it is hard. I get worried anytime she gets sick, but especially when it is so severe as this is.
I will try to update later this week.
Thanks for the prayers...

Friday- November 21, 2008
I think Tabitha is doing a little bit better this evening. I hesitate to say that because it is still early....
But, her diarrehia is better and that my friends, is a great sign!
She is still very weak and sleepy, which is to be expected. I hope I can update you this weekend with nothing but great news...'till then....

November 24, 2008-Monday
We are going back to the doctor tomorrow. Some improvement but not enough.
Looks like Thanksgiving this year will be at home with just us 4.
Kinda bummed. But atleast we're not in the hospital....yet.
I am staying positive. Tabby-girl will get through this. She always does.
Sorry if I sound rambled. Another sleepless night last night.
Thanks for the prayers.

Tuesday, November 11, 2008 9:30 AM CST

Tabitha is not feeling to well today and neither is her Daddy!
Dad has some serious asthma issues and I ask that you pray for him because he has actually took some time off of work which is something I have NEVER known him to do for himself.
Tabby woke up this morning with a high fever and head congestion so hopefully this will be a short term illness for her!
Can't write much now, but I will update again when I can!
Thanks!

Friday-November 14, 2008
Well, it has been a very long week at our house! Micheal is still coughing even though he says he feels better. He went back to work yesterdaY. I hope it wasn't to soon....
Tabitha's fever has turned into a horrible stomach virus. She is having some righteous diarrhea that makes me sick just changing her! Ugh! Usually these stomach bugs hang around awhile....so here we go!
Unusually, the # of seizures has went down this week so I don't know why that is. Although she is still having some BAD ones. I am giving her some medication to help, which works great, but makes her very sedated. We are still doing the Keto diet, but really ready to stop because Tabby hasn't been able to have anything by mouth except for 2 black olives a day. No mashed potatoes or chocolate cake. And honestly, we haven't seen that big of a change in her seizures since we started. For now, we are still on the 4:1 ratio, but once she gets better, we will probably start weaning.
(unedited)

Saturday
November 15,2008
Not much better today. Maybe even worse or atleast the same.
Horrible seizure day-Mommy needs a break.
I am starting to get a little worried now. Probably be going to the doctor Monday if things don't improve very soon.
Ugh-the joys of raising a special child.

Saturday, October 25, 2008 9:09 PM CDT

Wow- I have so much to share with you!
Since my last update Tabitha has been doing a little better than before. She is still having 5-7 seizures on most days, but having more frequent good days lately. This week she will be seeing the neurologist and also having some bloodwork taken to check her thyroid.
So far, her glucose has not been as low as a few weeks ago, which is great! She has since been diagnosed with carnitine deficiency and is now on a supplement for that as well. Still not sure if these thing are related to the diet or not, a friend of mine who has a daughter with 1p36 says her daughter is not on the keto diet, but her genetic doc. highly recommends carnitine supplements for 1p36 children. Also, her daughter has had a few episodes of low glucose levels. So, I am talking to some of Tabby's doctors/ about any correlation with 1p36 and the keto diet.
Now to brag a bit on my girl....
Tabitha has won 2 awards for her artwork this month! She has a piece in the Creative Expressions art exhibit at the Vanderbilt Kennedy Center from until January. It is called "Sunshine". She did this piece at school with her teacher. The same teacher that helped her with the piece that won last years Expressions of Courage Art Contest for Epilepsy. She received an award and rubbed elbows with the mayor of Nashville for a bit! It was very special!
She has also won again in the Expressions of Courage Art contest! This year her piece will be in a coffee table book! The piece is called "Hands On Experience", and is particularly special too me because I helped her do it this summer. The people that sponsor the contest were especially interested in Tabitha's story and want to do a press release this month to bring awareness to our community about epilepsy. It should be released soon, so keep your eyes open!
I can't tell you how proud we are of our little up and coming artist! This is one way that Tabitha can express herself and it really is so beautiful to look at! We hope that Tabby's art will show others that is doesn't matter what abilities you have or don't have, you can do ANYTHING and be succesful at SOMETHING. I personally urge everyone to go to an art exhibit by those with disabilites. You will truly be amazed at the talent these people have! It is amazing and magnificent! I feel so honored that my daughter can be a part of that. And she's only 4, so who knows what the future will hold for her!
So, that is about it for now....I will post pictures in the next day or two of Tabitha with her awards and family/friends! Thank you-Thank you-Thank you all!

October 27, 2008

Bradley had to write a poem for English class, and I wanted to share it with you all....

I Live Forever

I know I will not die,
But I see the fear in your eyes,
I feel the pain that you feel,
But I live forever.

You know I will not die,
Because I'm your Guardian Angel.
I will love you the way God loves you,
And I live forever.

We know I will not die,
Because I am what makes you love what's you,
You cry for tears of joy, but remember,
I live forever.

Looks like I have 2 artists!

Thursday, October 2, 2008 1:48 PM CDT

I've had some things to update, it's just finding the time, or the strength to actually do it!
Tabitha is doing okay. Still having alot of bad days and the neuro still believes it could be just a matter of fine-tuning her diet a little more. She is now on a carnitine supplement which could help her body use the fats she is getting from the diet. We are now having to monitor her glucose because Tuesday it was 40, which is extremely low. Yesterday was 60, and today 64, so she seems to be doing better now, but that scared us badly! Just another thing to do and I hate having to stick her 3 times a week, but she is a tough little girl and sadly enough, has gotten used to it.
Another thing neuro has done is increase her diet ratio again so she is very tired today, not to mention all that she has been going through the last month or so....I can see the toll it is taking on her.
It is so very frustrating....I told her doctor that if things don't improve soon we will just have to stop this diet. Things have been worse than ever before and that makes us feel indescribable. However, if we stop the diet, the only other med she can go to now is felbatol and this has alot of side effects also. She would also have to have bloodwork done several times a week in the beginning to monitor levels, endocrine, etc. So, this is why we are hesitant in stopping just yet.
We are putting our trust in God and Tabitha's doctors' to make the right decisions for her, although I will be honest, sometimes it is hard for me to have faith in anything anymore, but I'm not giving up yet! I tell ya one thing that helps is seeing my 2 gorgeous children together. It is so obvious the love they have for one another, they are the best of friends. They truly warm my heart everyday and for that I am so thankful.

NEW PHOTOS IN THE PHOTO ALBUM-FINALLY!

Sunday, September 21, 2008 3:34 PM CDT

Well, I wish so badly I could give a wonderful update. I wish I could say things have been great since Tabby's hospital stay....but the truth is, it has been a roller coaster ride. Tabby has had alot of bad days with a good day here and there. I am so frustrated. Her seizures are worse than ever and I don't know what to do. We are giving her Diastat every-other day and I know that soon she will be immune to it. I am ready to stop the diet, but I don't know if her neuro will agree with me or not. We don't see him again 'till next week.
Her MRI was "stable", but they couldn't do an in-depth one because of the risks with her having the VNS. I am so sick of seeing her seize all the time! There has to be something that can help her. I will not accept that this is the way it's going to be forever. Ugh-

Friday, September 12, 2008 7:42 AM CDT

Wow-is it already Friday????
Tabitha had a much better night last night. She slept on her regular schedule just like before! She went to sleep at 9:30-10 o'clock, and is still sleeping right now. She has had such a rough week. She is on IV fluids right now for a possible MRI today. She will be sedated. We really want one since it's been almost 2 years since her last one. But also get a little nervous always with sedation.
Her Neurologist really thinks the reason for her going into status is her hypothyroidism. She is now being treated for that. She also had high blood sugar. With these things throwing her body chemistry off, we are thinking this is the reason for her terrible week. They changed her medications around also. She is now on 5 seizures meds, the Keto diet, and still using the VNS. Hard to believe that with all this, she is still having seizures. Isn't she the toughest little gitl you ever seen? She is too me. I am so thankful God got her through this...
So, since she had a good night, and yesterday was better too, we may possibly get to go home today. I told the doc yesterday that I did not feel comfortable taking her home the way she came in and we would definitley have to have better seizures control before we could go home.
I just want to take a minute to thank you for coming by, and especially your prayers. I truly believe in the power of prayer, and Tabby has had it. We love her so much and all of you too. Also thanks you for praying for Bradley, that little guy had a rough time at first. He understands so much more at his older age. He seems better now, though. I miss him.

10 p.m.

Well, we are home! It is a good, yet scary feeling. Tabby has had a much better day today. She was sedated earlier for an MRI, but I am hoping that she will be this good tomorrow. We can already tell a difference with her thyroid med. She was hot and sweaty before, now she is more cold-natured like her old self. It seems weird to me how all of the sudden it seems she has hypothyroidism? Strange, but I am so glad it was caught in time. We were told this could be very serious if not caught in time. Thank you to the doctor that said he was just "grasping at straws".
It was funny, as soon as we got home, Tabby's eyes became clear, after being blood shot, and her skin became pink again. She needed home. She loves her home.
I know that all this was just another test of our faith. And yes, God, I believe! It was God's prayers that got her through this I truly believe! All the prayers I received via e-mail, phonecall, etc. it was magnificent! And when we got home, Mrs. Crownover brought cards from the 1st graders at Tabby's school...let me tell you, it brought tears to my eyes. The children drew pictures of her and butterflies. Many said, "I love you", and "I miss you". This is why we love her school so much. Notes left in our front door, and messages on our voicemail. Too many to return today....I am overwhelmed with grattitude and so thankful for this day.... For everyday.
My Mom is a life saver. I don't know what we would do if not for her coming to our rescue everytime we needed something. She is my best friend and I know that no matter what happens, she will be there. I love you so much, Mom.
And my Daddy....I put on a strong voice because he was in Equador on a mission trip. I couldn't let him know how scared I really was. I felt like it was time I use what he taught me and be strong and tough and get through this. I know it hurt him to be so far away, but I am so proud of him for what he is doing. He is my hero.
I use this page for so many things...yes, to keep you all updated on our precious angel, but also for me. This is my therapy. My release. And to those who do not understand, I hope you never do, but to those that do, you know that we all need something to let go. This is my way of letting go. Which reminds me of a favorite poem, "Let Go and Let God".
But tonight, instead of letting go, I am humbled by His strength. Humbled by His will. This is His will, and I will use it to show others of His wonders. Although it may not seem like it at times, Tabby was sent to us for that reason. If not anyone else, to teach me. And I am learning....I am thankful.

Tuesday, Sept. 16, 2008
Can I tell you that today has been wonderful?!?! Tabby has been nothing but smiles all day long! Just think, a week ago we were in a hospital room wondering what in the world was going on and now it's like nothing ever happened with her. She is amazing! Right now, I don't want things to ever change....this day had been so beautiful! And last night, Pap Jack & Nanny Beth came over....what a wonderful treat!
I especially wanted to thank those of you that have came by and visited this page with your prayers and thoughts.
Thank you....It's those words of encouragement that get me and Micheal through the hard times. Thank you Miss Nicole for the message....it's the little things that mean so much!
Thank you to all the friends of the family that I don't even know.....your prayers do wonders for our family and you can bet, that we return them right back to ya! It is NEVER forgotten!

Thursday, September 11, 2008 12:58 AM CDT

I tried to update earlier, but for some reason it didn't work!
Tabby is still at the hospital and probably will be for a few days. We are having a hard time getting her seizures under control. I don't understand what is going on with her. All of her labwork has came okay except her thyroid. She has been diagnosed with hypothyroidism. She will start treatment for that. Not sure if this is the reason for all the seizures or not. Still waiting on some tests results and a talk with neurology. Last night I am sure she seized for an hour.... I am asking for an MRI today. Hopefully we can get one.
Please just pray that we can get to the bottom of this and that things get back to "normal" soon. (whatever normal is)
Thank you for your prayers...

Wednesday, September 10, 2008 7:34 AM CDT

Please pray for Tabby. Yesterday she went into status epilepticus and was in the ER all day long. She seemed better, so they sent us home and we had to turn around and come right back. She had the worst day of her life yesterday......
They have discovered that she has hypothyroidism. Not sure if this is lowering her threshold so much or not. I know they will get to the bottom of this. So far, this morning has been a little bit better. Hopefully, we can go home today. I will try to keep posts going.
Right now she needs prayers. Lots and lots of prayers.

Saturday, August 30, 2008 10:36 AM CDT

A message from Tabitha:

On September 2, 1996, my Mommy tells me a very special little boy was born. He is my Bubba. He is the bestest Bubba God could have given me. He helps Mommy take care of me and he likes to play with me. He loves me very much and me and him are bestest friends. We will be forever.
Bubba, I hope you have a Happy Birthday because you deserve it more than anybody I know! (And I know alot of people!)

I Love You Bubba,

Tabby

Monday, August 11, 2008 2:00 PM CDT

Wow! I can't believe today is the first day of school! Where did the summer go? I am going to miss my babies! I really like them being home with me during the day! We had such a good summer and did alot of fun stuff!
Tabby will be going to school this year the same as last year. 3 days a week for 3 hour time periods. We feel this is sufficient for her and me!
By the way, she did absolutley FABULOUS in physical therapy today! She is really on a roll with weight bearing (legs) here lately! Could this be realated to the diet? (hmmmmm) Whatever it is, she did great! She is also holding objects in her hands for longer periods and sitting for longer periods too! So Wonderful!
She still has a rough seizure day every now and then, which we will expect for eternity, but she is still doing extremely better than what we had hoped for! Which only makes my expectations higher!!!
Bradley is doing great too! He will be becoming a Advanced Blue Belt martial artist this month! We are very proud of that! He is now in the (gulp) 7th grade! I am a little nervous because this is the time that all those "changes" start occuring. (bigger gulp) I think we're doing pretty good though as far as teaching him right from wrong and so forth. Maybe not so much our parenting, but the fact the kid has a great head on his shoulders is a really good sign!
Well, I guess that's about it for now. We are so thankful for each one of you that comes by to check on Miss Tabby. We are even more thankful for the ones who leave a message! (wink-wink)
Have a great day.....until next time.........

Sunday, July 27, 2008 3:50 PM CDT

Tabitha is doing absolutley wonderful! This Keto diet has been the best treatment she has ever had! We are estatic and really just can't tell you enough how pleased we are! We are seeing a different girl these days! A very happy girl who is stronger and more attentive than we have ever seen! It is great!
She still has some rough days from time to time. We have come to realize that Tabby will always have seizures. Forever. But even her rough days are much milder than a normal day was before she started the diet. The great news is that the Dr. tells us to give the diet atleast 3 months to see the full effect, so since we have only been doing this 1 month, we are hoping things will only get better from here on out! It is times like this that I know without a shadow of a doubt that God is listening to our prayers. We are so grateful that we can't even talk about it without getting teary eyed! (Neither can her neuro or dietician!) Her results are so far amazing!

In other news.....
I bet you didn't know but one of the greatest men in the world will be having a birthday on August 1st. That man would be Tabitha's father. He is the greatest man I have ever known next to my own father and I really want to give him a special birthday! (Any tips-please e-mail me!)
This guy has worked everyday sometimes 12-16 hours a day since Tabby was born to provide for us. Keep in mind that I have not worked since Tabby was born! He busts his rear just to give us everything we want, even though it's not stuff we really need! He takes better care of Bradley than his biological father does and I can't tell you what that means to me. Speaking of answered prayers.....as my Daddy says, Micheal is surely one of those! Anyone who knows him, knows what a great guy he is!
Happy Birthday Baby!
I know if Tabby could she would sing you a terrible Happy Birthday song and wrap her arms around you so tight and kiss you on the cheek!
We love you so much!

Thursday, June 26, 2008 4:10 PM CDT

I can't believe we are already through the 1st week of the Keto diet! Things are going okay I guess. Tabby has been okay until yesterday. She had a long day of terrible seizures....we talked to her neuro abaout it and he adjusted her medicine accordingly for the next couple of days to help her get used to the change this diet is putting her through. He said this is normal in the beginning as did her dietician. The med change did help and today has been much better. She has been having an upset belly too, because of the diet change. I am sure eventually everything will adjust and she will be fine. We still feel optimistic and that we are doing the right thing. The 1 bad day we had is nothing compared to the 6 wonderful days we have had! I hope it just gets better and better!
So, needless to say, we have been kinda stuck in the house lately which is a drag. It's too hot outside anyway! Bradley has been a great help not to mention Micheal too! Thank you for dropping by and checking up on Miss Tabby! Leave us a message!!!

July 3,2008

Just so you know.....
The artwork above is Tabitha's artwork that is in the Epilepsy Foundation 2008 calendar. Tabitha's artwork is featured this month in the calendar.
For those of you that do not have one, this is what it looks like!

Happy 4th!!!

Wednesday, June 18, 2008 7:31 PM CDT

Well, here we are due for another update! I hope everyone had a good Father's Day! We spent the day with my father and had such a great time! Tabby and I truly do have some wonderful guys in our lives! Lucky us!
Now for the Tabby update.....
We have been struggling and struggling with seizures for what seems like forever, well it has been for Tabby! After all the medications, the VNS implant and lots of sleepless nights, we have talked with Tabitha's neurologist and a great nutritionist about starting the Ketogenic diet. We pretty much have no other option at this time unless we want to try another medication on top of the 4 she is already getting. We will be starting this diet tomorrow. It is a bit overwhelming, but I have joined a support group and have talked with other parents, etc. and I feel good about this. We are making a major life change, but if this helps at all it will be very much worth it.
Tabitha's seizures have always scared me but lately words cannot even describe the terror I feel when she has one. They are fierce. I don't want to go into detail her, but those of you with experience can only imagine. We feel it is time for a change and this diet is the easiest alternative right now. Yes, there is alot of measuring, med changes, checking ketones, etc., but maybe, hopefully, prayerfully, it will be worth it.
It will take awhile before we will be able to tell the effects of this diet, so I will try to keep everyone posted the best I can.
Right now, your prayers and support are gratefully accepted!
Thank you for coming by and checking on our sweet girl...our special little butterfly....

Saturday, June 14, 2008 9:40 PM CDT

Father's Day.....

What a special day Father's Day is....
We all need Father's.....
When we are cranky,
They listen.
When we cry,
They wrap their arms around us.
When we tell bad jokes,
They laugh anyway.
When we need a break,
They tell us to take one.
But not everyone is as lucky as we are.
You see, Tabitha and I have been blessed with Father's that do way more than that.
Father's that work hard, and teach us life skills and morals that they probably don't even realize they are teaching us, and if they do, they don't realize that we are really noticing it. We are using it. We remember it.
My hat is off to my husband and my father.
For they have put up with much more than I could.
I could not deal with me. And if I am a "good mother", it is all because of them.......

Happy Father's Day!

Tuesday, May 27, 2008 12:06 AM CDT

Wow-it's been about a month since my last update so I thought I better get typing! Tabby is really doing great right now, which is one reason why I haven't updated! We have been so busy with end of the school year functions, gardening, and enjoying the outdoors! We have lots of flowers and vegtables planted to keep us busy all summer long!
Tabby's Gastric Emptying Study went fabulous! Everything was normal which is great. I guess the Prevacid and Zantac combined is helping her alot!
She has also recently started a new seizure medication which seems to be helping alot for now....She is now on a total of 4 seizures meds with the VNS and Diastat as needed. That's a bunch isn't it? Whatever it takes....
Bradley is doing great too! He is so glad school is out for the summer and wants to "party" every night! This usually includes a boardgame, movie, music or something along those lines. Of course if it is nice outside that's where you will find the whole family most of the time!
Thanks for coming by and checking up on our little angel!

Monday, April 28, 2008 9:19 AM CDT

I finally had a few minutes to update so I thought I would take advantage of it!
Tabitha's scope went really well. Her esophagus looks great and there is only ONE diverticulum and it is not causing any problem at this time! That was great to hear! However, there was some gastritus/inflammation in her stomach so the doctor has ordered another test, a stomach emptying test, to be done in May. He also prescribed her some Prevacid to go on top on the Zantac she's been on for a few weeks. Hopefully, these two medicines together will keep her stomach problems down to a minimum.
We also had Tabby's annual IEP meeting at school last week. These are always So Much Fun! Just kidding-I really hate them, but this is one of the joys of parenthood, right?
Speaking of joys, Tabby is home today with a low grade fever. No other symptoms. (???) Hopefully that will be all it is and go away within a day or two!
Bradley has now advanced to a Blue Belt Martial Artist! We are proud of him for sticking with his karate even when he doesn't feel like going! He's almost half way to Black Belt! He also did great on his Progress Report last week! We are really so very proud of him! There's no place I can go without someone complimenting his wonderful manners and how good of a boy he is! Every mothers' dream!
Thanks for coming by to check on Tabitha! Your prayers are always felt!

Tuesday, April 1, 2008 1:05 PM CDT

I wanted to take a minute to give a little update on Miss Tabitha....
Her seizures are somewhat improving. Good days having 2-3 Grand Mals and bad days having 6-7. Still not the kind of control we would like to see. After talking to some of her doctors we decided for Tabby to have a UGI (Upper GI) test. This was done yesterday. Tabby has 2 diverticulums which are pouches on her esophagus. These are similar to hernias but not "true hernias". Her doctor would like to get a better look and do another test called Endoscopy. This will also tell us if Tabby may possibly need a surgery to repair her esophagus. This test also is not a new thing for us. Tabby has had a few before but the last one was 2 years ago. On the UGI her Nessan looked good, but the scope will let the doc get a better look at that as well.
If you could please say a little prayers for Tabby we would so appreciate it! Although we have been through these things many times, I still get nervous! She will have to be sedated for the scope and that itself makes me nervous! It is also possible that if these diverticulums are serious enough, she could be facing another surgery so all prayers and thoughts are much appreciated.
I will update as soon as I can-the scope is not 'till April 17th....
I hope you enjoy the picture of Tabby is therapy! She works very hard and has great therapists!

Wednesday, March 5, 2008 1:49 PM CST

We sure are ready for spring around here!
One day it's warm, the next day it's freezing cold!
Tabitha is doing well, still having some bad seizure days. I can't help but wonder if this crazy weather has something to do with that.....We have adjusted her meds a few times in the last few weeks, hopefully that will work out well for her and give her some relief!
Therapies are all going well and keeping us busy, busy, busy as usual!
Tabby had a audiology appt. this week and that went well too! Her tests showed that she can hear well in both ears and responds to speech and sounds, etc.! We were so excited to hear that since Tabby can't really tell us much and hearing loss is very common in other children with 1p36 syndrome.
Next week she will get a new seat for her wheelchair, since she's outgrowing her present one!
That's really about it for now! Please, say a prayer for some seizure relief for Tabby, and everyone out there who is struggling with this awful hard to control epilepsy.

Tuesday, February 19, 2008 6:50 PM CST

Hello-hello!
Here's an update for ya....
Tabby had her 6 month dental check up last week. No cavities! Yaay! Her gums are a little enlarged from all the seizure meds, but her teeth look really good! I brush them everyday and she is getting very used to it and doesn't seem to mind it too much!
She also had a EEG last week. Nothing new. The doctor calls it "multi-focal", which basically means her seizures are coming from every which way in her brain. We already knew that, so this was no surprise.I just wish there was a cure....
Her lamictal level was extremely low, so we have increased it (lamictal dosage) last week, and are now increasing it again, as her seizures have been crazy the last few weeks. After we get the maximum benefit from her drugs, if there is still no releif, we will probably either be trying another medication called felbamate (sp?), or the ketogenic diet. The fact is that we are running out of options untill Tabitha gets older, so we have some hard decisions to make. She loves to eat things by mouth that she could not have if on the diet, but if we can control or even stop her seizures....I guess that's a risk we will just have to take. You see, when Tabby had her VNS implanted, we felt the same way, but here we are....with not as much improvement as we had hoped for. So, her father and I really don't have high hopes for any treatment at this time. I know that sounds so negative...and then at other times I feel so positive. I can't accept that nothing will work. I KNOW there is something out there for my girl. Maybe we just haven't heard of it yet, but there will be something in her lifetime that will save her life. I just know it.
Well, here I am spilling my heart to complete strangers again.....
It's just that here lately I have had that feeling. You know, that feeling of sadness. Why does my baby have to go through all of this? Why? Why? Why? Yet, this all feels so normal now. It's very strange....in the past, I would have never pictured this to be MY normal life. Yet, it is, and most of the time, I don't mind it at all. I feel chosen in a sense to care for these special children. Or, have they been chosen to care for me? To teach me something? Yes, I do believe that is so. But I do give my life to them...perhaps forever...
But, then there are times, that the sadness and grief are so heavy on my heart that I can barely find the strength to be strong for my children and my husband. Yet, from somewhere it comes, and I go! It's like it is just inevitable....No matter how weak I feel, God gives me strength. No matter how hard I want to cry, God gives me a smile.....It is truly amazing too me.
Okay, I'm going to stop now...I am really getting carried away!!!!
If you have managed to read all of this-God Bless You!

Tuesday, January 29, 2008 8:05 PM CST

Tabitha has been doing so well that I'm almost too scared to write about it for fear of a jinx! (I'll try not to be superstitious though!)
Things are going great-Tabby is doing wonderful! She and her brother had a horrible cold and ear infection a couple of weeks ago but are now over that and doing fine!
Bradley received his Purple belt in karate last night and to spite a sprung ankle, he did a kick demonstration that received applause from everyone!
Tabby has gotten a Theratog suit and this suit is amazing! She was able to sit totally unsupported for about 45 seconds when we first put it on her! This suit gives her some much needed muscle control and is such an improvement that you can't help but notice! Her weight bearing through legs is also improving and we hope to soon be getting her a Rifton Pacer to improve on walking skills! This is something her PT has been working with for the last couple of months and we have seen enough progress to pursue getting one for home! Isn't that great!!!
She is also in need of a new bath chair and wheel chair seat which will hopefully be in soon....wow-she is growing so fast! It's hard to believe that she is about 45 lbs. plus!
Tabitha has however demonstrated some dystonic movements that have concerned me a bit. She finally gets to see her new nuerologist next week and I plan on bringing this up. I believe there is a medication we can try. (?)
She also has her annual eye exam next week and a hearing evaluation coming up. Since hearing loss is a typical trait of 1p36, we feel it is neccesary to keep tabs on this. Please keep your fingers crossed that all goes well with that!
You know, many say that I have my hands full at the moment, but I actually have no complaints. Life is good and life is perfect!

Wednesday, December 26, 2007 7:39 AM CST

HAPPY BIRTHDAY TABITHA PAIGE!!!

Four years ago today we patiently awaited your arrival into this world. Little did we know how much that day would change the rest of our lives forever....
You have touched the heart of every person that has met you and have taught your father and I so many things that most people never will learn.

We love you SO much and are so very happy and blessed to have you as our loving daughter!

HAPPY BIRTHDAY TABBY!!!

January 8, 2008

Happy New Year!
I can't believe it is already 2008! Wow-where does the time go?
We had a really nice Christmas and Tabitha had a great birthday! She really attended to the presents this year and got really excited about opening them! We could tell she was really enjoying family and friends too! I am so amazed when I look at her at how far she has come in the last 4 years. She is my Angel-baby.....
Yesterday she had her annual Orthopedic appt. and that went great! No change in the last year! (By the way, that was the same report last year!) Her right hip is slightly "uncovered", which I think is called Coxa Valga, but I'm not sure. He was not concerned about it and told me some stretches to do with her. Her scoliosis was unchanged as well, although he didn't order a x-ray on her back. He said he will do that next year....all in all, it was a good report and those are always welcomed!
I hope every one of you have a great 2008! Thank you all for your love and support as we go through this journey of life with a little girl who has taught us so much......And by the way, she has one extraordinary big brother too!
(unedited)

Saturday, December 15, 2007 10:24 AM CST

Merry Christmas!

Tabby's seizures are under better control now. She had a little bug last weekend that only lasted for a couple of days thank goodness!

With the Christmas approaching we are going to be very busy for the next couple of weeks so I wanted to come by and wish you all a very Merry Christmas! I hope you all have a wonderful, healthy holiday!
Don't forget the reason for the season!

Love Always!

Wednesday, December 5, 2007 6:27 PM CST

Tabitha's seizures are still acting up a bit..I would do anything for them to stop.
We have increased one off her meds...hopefully this will work for awhile.
Christmas is coming and it's the most wonderful time off the year!
Of course, after Christmas...Miss Tabby will 4 years old! I can't believe it is here already! We are going to have party and hopefuflly it will be a success!
Will update again soon..........

Thursday, November 29, 2007 6:37 PM CST

Definition:

Perfect: "Being what you are MEANT to be."
Being what you are meant to be to it's fullest potential.
I heard this from a Bellmount University Professor and I must say it has stuck with me over the last few years....
Something to think about....

Things are going okay around here....Tabby's seizures are acting up a bit, but then again it's time for them to...
Life is good, and life is "perfect".

Saturday, November 17, 2007 8:44 PM CST

I just wanted to take a moment to wish you all a very, very Happy Thanksgiving!
We all have so much to be thankful for, don't we? I know, that for us, in the last few years we have truly realized all the many blessings we have in life. We have met so many wonderful people who have touched our lives in a ever-lasting way...Our beautiful family has grown in ways that no person can see with the human eye....but with the heart.
I hope that each person that stops by this web page has been touched in a way that makes them thankful for what they have in their own life....and maybe you can teach another the same.
Sorry for the sappiness-it's just that time of year for me! A time that I realize my own personal blessings, and I am so very thankful for each one of them....

Happy, Happy Thanksgiving!

Friday, November 2, 2007 10:30 AM CDT

Tuesday, November 6, 2007

Have you ever noticed that you never have a camera for those most precious moments in life??? Yesterday was one of those moments for me and I'll be dog-gone if I didn't have my camera on me!!!
Yesterday was Tabby's first day at Physical Therapy at Vanderbilt in Nashville. They put my little angel in a light-gait trainer which is basically a walker type device. Wow! My little angel tried to walk! She doesn't bare good weight on her legs, but by the end of the session she was beginning to get the idea that she could actually move herself! They put her on the treadmill (Wow!), and they put her in the hall and we walked her down one end to the other!!! Don't get me wrong, it took alot of help for her. Ther therapist had to move one leg at a time in a walking fashion to try to "teach" her muscles what to do. It was obvious that Tabby was trying to do it herself by the end of the session! For the first time ever, I got to stand in front of Tabby and say, "Walk to Mommy!" Oh, the joy I felt I cannot describe!!! It was the closest thing to walking Tabby has ever done and I didn't know if I'd ever get to see this day! I will never go back to PT without my camera again, so be sure you WILL see pictures of this amazing site!

Now, isn't that just the cutest little cowgirl you ever saw???? She reminds me of that cowgirl in the Toy Story movie!
Tabby is doing much better and was able to do a little trick or treating on Halloween! We didn't let her over-do it! It was so cool to see the excitement in her face! When Tabby gets excited-her whole body moves! She was justa clapping her hands and smiling and jabbering away! Her Dad and I were so proud for her!
Bradley was a very scary "Jason"-he thinks he is too old to trick or treat! We explained to him that he only has a couple of years left to do it, so he'd better do it while he can! We all had so much fun visiting with our neighbors and laughing!
The Epilepsy Foundation calendar has been published and we should be receiving our copies within the next 2 weeks! I can't wait to show you all Tabby's painting!!! I MAY have some extras, so if you're interested in one...let me know! You may even be able to contact the Epilepsy Foundation in your area and get one! THEY ARE TOTALLY FREE! I would encourage you to make a donation this month in honor of Epilepsy Awareness month! Every penny spent on research can lead to better treatment for those with epilepsy!

I guess that's really all for now. Remember...if I don't mention the "S" word-that means things are going well! (Most of you know what that means!)

Saturday, October 27, 2007 12:44 AM CDT

I wanted to update to say that Tabby is still battling a pretty rough cough. She is just having alot of sneezing, coughing, runny nose, and fever. You can look at her and tell she doesn't good at all! I hate seeing my baby sick!
Hopefully she will feel well enough by Halloween to dress up as a Cowgirl! She looks so cute! I can't wait to post pictures!
That's about it for now-I will try to update as soon as possible...

Friday, October 19, 2007 3:16 PM CDT

Friday, Oct. 26, 2007

Micheal is with Tabby now-she is feeling a bit under the weather today. She has gotten so sick so fast....I'm sure it is just a bad cold. Coughing, sneezing, and a fever. Sleeping alot.

Just say a little prayer for her to get better by Halloween-
Thanks...

Well, it's that time of year again! I love watching the leaves change colors and the temp. is much more pleasant outside....unfortunatley, that also means seizures are terrible for Tabby. She has had a rough week, but I believe it is starting to get better now. last week we saw her neuro and we are increasing her meds yet again. We also discusssed different treatment options for her dystonia. Treatments meaning medicine and surgery. It is not anything we are looking at right now as we are focusing are seizures for the time and starting the med for dystonia could cause some side affects w/ the seizure meds she is taking.
Therapies and school are going well for Tabby too! she works so hard that she is completely exhausted by the end of the week! We are also trying to get her a new seat for her wheelchair since the one she has now is getting smaller! Or is she getting bigger! (ha!) We are also trying to get her a new car seat since that is getting smaller too!
Great news to share-I submitted some of Tabby's artwork in a art contest for people with epilepsy. Her artwork has been chosen to be in the 2008 Epilepsy Foundation calendar! Her art will be displayed in a medical facilty in the U.S. (not sure yet, but plan on finding out!) We are so very proud of our little artisit! She must take after her Papa Jack! I can't wait to share the artwork and press release with you all as soon as it becomes available!
Such a special little girl with a big, big message!

Monday, October 1, 2007 1:44 PM CDT

Tabitha is doing great except for a nasty cold that had her down a few days last week! Besides that she is doing well in ALL areas! Her eating has improved tremendously! She loves to eat! Her speech/communication has improved as well! School is great! Tabby loves it, although the teachers have told me that as soon as I leave Tabby is calling, "Hoommmmme!" She is usually calling this when I pick her up too! She is doing so well in all areas-we really are just so proud of her!
Next week her class is going on their first field trip for the year! Of course you know, good 'ole "room mom" will be going too! This should be exciting and intersting all at the same time!
I'm going to keep this short and sweet this time-thanks so much for dropping by!
Enjoy the pictures!

Friday, September 14, 2007 7:44 PM CDT

Well, I thought it may be time for another update. However, I really don't have much to update you with. Things are going pretty good for all of us right now. Tabitha is doing amazing and staying busy with all of her activities. She seems to really be enjoying school and you have no idea how happy that makes us!
As far as the seizures go, she is having good days and bad days (as always), but the good days have been more frequent. I don't know if I mentioned or not, but her neuro has started her on a new med called Lyrica. I had never heard of this before, but it seems to be working well with Tabby's Dilantin and Lamictal. No more Clonipin! Yay!!! We still have another increase to go on this new med, so we will keep praying that it works and gives her control. She also has been taking her vitamins the neuro suggested, so that could be a reason for this great control too-we will take it....whatever it is! As long as she is well-we are well!
Tabby's communication has really picked up too-I just love the Comm/Aug Clinic she has been attending. I recommend it to anyone! The progress she has made has truly impressed me and part of me feels a little guilty about it for maybe I underestimated her a bit. I have a feeling Miss Tabby has many more surprises up her sleeve.....

Bradley has been recommended for the Black Belt Club in his karate school. This is not an honor that all students get, and we are very proud of him! He will get lower rates (Yay!), and a fancy smancy uniform to wear! He will also have more time at the school to practice and have classes where he can earn more credits towards his next belt! He also brought home his first progress report for the year and it was A's, B's, and C's! This is great for a 6th grader in my opinion! Especially my 6th grader!

Thanks for coming by and checking in on our family! Happy Fall Ya'll!

Friday, September 14, 2007 7:44 PM CDT

Thursday, August 23, 2007 3:10 PM CDT

Just wanted to give a little update.....

Things are going well....Busy-Busy-Busy! Tabby is doing well in school and trying to get used to her new schedule! We are still "tweaking" her meds to give her better seizure control. A never-ending battle it seems...

Tomorrow Tabby will be having some dental work done in the hospital. Nothing major, but she will be sedated and that always makes us a little nervous. She should be able to go home the same day, however they will keep her as long as needed for observation, etc. I am sure everything will go smoothly and we will be home by tomorrow afternoon...

Bradley is doing well in 6th grade so far and is really adjusting well to his new school!

Besides that-everything is the same 'ole same 'ole! Thanks for checking in and I will update as soon as possible with Tabby's hospital visit tomorrow and hopefully some new pics of her and her gorgeous, ever-growing, curly hair!

Saturday-Aug. 26th

Tabby's short little hospital visit went just fine! It was the fastest visit to the OR we have ever had and it felt really strange to leave so quickly! At the same time, it felt really good! Tabby did just fine with sedation, and everything else! We were home around lunchtime and she did run a low-grade fever with some congestion, but that was all gone by Saturday morning! Her seizures have been increased which makes me wonder if the Versed (sp?) has something to do with that, or just the whole ordeal in itself? Who knows-her seizures have been a roller coaster her whole life and sometimes I wonder if she will ever have a day again without one...on the other hand, sometimes I feel that there is SOMETHING out there that WILL give her complete control and I cannot stop until we find it!
We were so very proud of her for handling everything so well....she was a little upset at first when she realized where she was-I can't tell you how happy that makes me...for Tabby to know she is at the hospital-to be upset about it. Some would say she doesn't know the difference, but I know that she does. Some say she doesn't know alot of things, but I say they have never met someone like my Tabby before!
She had a wonderful male nurse. He has had her before, and he remembered her. He talked to her, he looked at her. Do you know how many people DON'T do that? He gave her a stuffed animal and told her that she was the best kid in the world. Yes Kevin, she sure is! (except for Bradley too, that is!)

Monday, August 6, 2007 9:39 PM CDT

Well, the neurology appt. went great! We were really impressed with the doctor's knowledge and patience. He spent a total of 2 hours talking to us, and another 15 minutes with me on the phone today! He increased Tabby's Lamictal and also cut her VNS up a little bit. He also suggested to us a B6 supplement for Tabby. We are anxious to give this a try! He is not afraid to change meds and seems to be on the cutting edge of all the latest epilepsy treatments. We see him again the end of the month!
Tabby is doing better now. Her dilantin and lamictal levels were just too low. This little girl is growing and it takes more medicine to keep her levels therapeutic!
Everything else is going great as well.....she has been going to the Comm/Aug Clinic and I have really noticed alot of communication skills emerging since she's started. I am so proud of everything she is doing I wish I could just write it all down to share with you all, but the words just don't come to me! I am so proud of her, and all of my family tht I am just elated with joy and humbled by the love God has given me!
Micheal and I are so thankful for each and every one of you that continue to check on Tabby (and Bradley) and the loving support you have given us over time....we cherish each one of you!
By the way, Bradley is doing excellent! He is now a GOLD belt in karate and also starting the 6th grade this week! He is turning into quite the young man and although I might not be ready for this, is sure seems to be! I am so proud of his good-nature and compassion for others....he has such a gracious and loving heart!
Ok-enough of my babbling!
Thank you for checking in~~~please, please sign the guestbook and let us know you came by!

Saturday, July 21, 2007 5:32 PM CDT

The last couple of weeks have been somewhat frustrating....
Tabby has had alot of seizures....we weren't able to have her levels checked until yesterday, and of course....they were low. So now we have increased her dosage in hopes of better seizure control.
I must tell you, it is the worst feeling I have ever felt watching my child seize and not being able to do anything about it. I have given her diastat twice in the last few days. but still, that will stop them permanently. I pray and cry out to God to please give her some seizure control ...
I just know that if her seizures would stop she would progress so much.....
We have a appt. with a new neurologist on August 3rd. We have heard many wonderful things about this doctor and we pray that he will have many suggestions for us. I will keep you posted.....

Saturday, July 7, 2007 9:53 AM CDT

Well, as you can see from the pictures....we went to the beach! It was a last minute decision we made and we are glad we went! We only went for about 3 days, but we had alot of fun!
Tabby seemed to enjoy the beach and rested alot when we were there! Bradley LOVED the ocean (as we already knew!) It was enjoyable for us all.
It was a little bittersweeet to see all the children running and playing when our sweet Tabby can't do those things. But we were just happy to be there together and have some special memories that will last a lifetime!

Monday, June 25, 2007 8:19 PM CDT

As you can see, I have posted some pictures of Tabby in PT from earlier today....I think she looks great! It is very hard for me to capture in pictures all the hard work she really is doing, but she has been working very hard in PT! The therapist has really been focusing alot on Tabby participating in transistions on and off the bench, (in & out of her chair, etc.)and it is really starting to show that Tabby is following her lead! This therapist is so great! She has had Tabby since she was 3 months old and has been one of the most patient people with Tabby! She never underestimates(sp?) her, and pushes her to her limits! That's what Tabby really needs to learn these things and to have determination to do them! I am proud of both of them actually!
All of Tabby's other therapies and school are going great also! She has a wonderful team working with her and we love them all!
Next week we are all taking a break though....no therapies, no appts., no nothing! (except whatever we want do to!) Yaaay!
This weekend my husband and I are going on our first date in...well, um.....3 1/2 years! We are very excited! I think it will be very nice for us to go out to dinner and just talk alone. We'll be nervous, for sure! But it will be nice too!

Wednesday, June 13, 2007 5:52 PM CDT

I know I haven't updated in awhile, but it's because things have really been going pretty good for Miss Tabby!
We have been very busy doing summer activites and all of her therapies, etc. She has started the Communication Clinic at Vandy and that is going very well! I really like her new ST, and she is also getting Feeding Therapy there from another ST. She is good too!
Her teacher is coming by twice a week with school services and PT and OT are going strong as well!
Bradley is getting ready for Karate Camp! He is really doing well in his karate! I am so proud of them both!
I know this is short, but I just wanted to update quickly and let you all know things are fine!

Monday, May 14, 2007 10:41 AM CDT

I hope all you mothers' had a wonderful Mother's Day.
I hope you enjoy the picture above....it was a very special moment for me. Something I didn't know if Tabitha would ever do, but she did! She didn't ride him, just sat there a minute....a very precious moment I will hold dear forever!
Things are going very well.....we have a busy week. Cardiologist Tuesday, Neurologist Thursday. Tabby is doing as well as to be expected, and I am so happy! Bradley is doing well in school and karate! He is now an orange belt, working on the gold belt. School will be out in about a week and a 1/2. He is anxious! Tabby will be getting school services throughout the summer (2 hours wkly).
I will update about this weeks appts. as soon as possible!

Wed., May 16, 2007

Yesterdays cardiology appt. went great! Tabby still has slight non-compaction on the left side of her heart, that will always be there, it will not fix itself....but her heart works great! Still no need for medication, etc. The great news.....her VSD is functionally gone! It was seen on the echo, but cannot be heard with a stethoscope! This is wonderful news! The dr. believes it will probably just go away....he said, "if it gets any smaller, it will be gone!" Yaay! He doesn't want to see Tabby for another 18 months! Then, they will just do a ultrasound to check the non-compaction. This is great news, and we are very excited that Tabby's heart is getting better. For those of you that don't know, Tabitha was born with 2 VSD's, one closed up about a year and a 1/2 ago! I just had to come share this great news!
I don't expect any big news tomorrow at the neuro-this is just a check-up. BUT, if there is any news, I will surely let you know! Thanks so much for coming by!

May 17th

Well, I have another update....overnight Tabby has sprung a low-grade fever with diarehhia. We ask that you pray for this stomach bug to be a short one and that she will be well enough to get out some this weekend! Thanks!

May 23rd

Congratulations Tabitha! Yesterday Tabby had her Awards Ceremony at school and Tabby received the "perfect 10" award! This award is for strong effort and determination! Way to go Tabby!

Stomach virus is gone-yaay!

Friday, May 4, 2007 8:31 AM CDT

Tabby is doing very well these days. Her seizures are better with the exception of rainy days....I really think barometric pressure can trigger them. Last Friday she had a pretty bad one, and we gave her the diastat so she slept pretty much the rest of that day.
We have been very busy with end of the school year events. Next Friday, Tabby will have her first field day at school and her father and I will be having a IEP meeting. (fun) Bradley will be going on his first long distance field trip to the Chattanooga Aquarium. I bet he will have more fun than us! I may see if there is a way for me to go with him and Dad stay here with Tabby. I am not sure yet. I hate to miss a IEP and I hate to miss a trip with Bradley!
Tabby is doing well in school! I think she really enjoys the being with the other children...I can tell a difference in her personality. She is eating so well these days also! (as you can see above!) I am wondering if this could be the explanation for the strange bowels these last few months. It really makes sense. She has never ate this well/much by mouth before. It really is exciting! I am so proud!
I have been busy myself volunteering for the CDO. (Chromosome Deletion Outreach) This is a great organization for children with chromosome deletions. I am so glad to be helping. I also volunteer for the Unique Rare Chromosome Disorder Support Group, which is another fabulous group for families with chromosome disorders. If you or anyone you know is interested in joining one of these groups please e-mail me and I will be happy to get you more information!
Hope everyone had a great weekend!

Sunday, April 22, 2007 11:15 AM CDT

Update....

Tabby is doing much better this past week. Seizures are decreased, but not totally controlled.....so we increased the dylantin a bit (recommended by the neuro) and hopefully that will help!
Her numerous smiles have been such a joy for us to see. Her latest achievement is hugging. I will ask her to hug me, Micheal, Bradley, etc...and she will put her sweet little arms around us. This is the sweetest feeling a mother like me could ever have. I am so thankful for this little milestone Miss Tabby has recently accomplished.
Tabby's GI appt. went well, he did in fact order numerous tests and x-rays all in which were normal. This is a good thing, but does not explain the inconsistent stools over the last few months. Anyhow, stools seem to be much better this week, so I am not worried too much about it for the time. Could it be due to the fact that Tabby has been in a new atmosphere with new germs, etc at school? As for now, that is my asumption.
So, that is it for now. All good news! Thank you for your continuous support and visits!
Also, could you please keep the Preston family in your prayers. They have lost a sweet angel last week, Katilynn. She will be very missed by her family and I know her mother would appreciate your thoughts and prayers.

Wednesday, April 11, 2007 6:37 PM CDT

Looks like it's time for a little update!

Tabby is doing better these days with seizure control. The dylantin seems to be helping her for now....she is still having around 5-6 seizures a day, but that is much better than before! She is also much happier and is finally smiling again! I think it is safe to say that Tabby and klonipin do NOT go together!
Her bowels are still acting funny. Very inconsistent. She finally gets to see GI Friday. We'll see what he thinks about all of this. I feel strongly we should order some tests. This has been to inconsistent for too long, and also it would give some peace of mind.
Yesterday was Tabitha's first day of school in the classroom and I actually left! Wow-it was so hard. I cried most of the time she was there. I know she is in great hands, it's just hard to leave her after 3 years! She seemed to enjoy herself from what I saw, and the teacher was sure to call me to let me know she was fine and keep me updated on all of her activites! I can't believe my little girl is in school now.
I will try to put some Easter pictures up soon....it was a good day, and a hard one all at the same time. It is very hard for me around holidays. Easter is one of the toughest. All the other children are hunting Easter eggs and laughing and playing......I yearn so badly for Tabby to do those things and I am beginning to realize that she probably never will hunt for Easter eggs or open presents at Christmas or on her birthday. You would think after 3 years, I would have already realized this, and a part of me has. But there has always been a part of me that has believed she would someday do those things. Since I can't change these things, I feel I have no choice but to accept it, but it will always be hard. It is fun to dress her up though, and she sure is pretty and gets lots of attention! You would think she was a movie star or something. All of the oohs and ahhs.....I have seen her bring some people to tears. I am so proud of her for teaching others to appreciate life. I know she doesn't know what she's doing, but I do believe that she knows she hass been blessed with a gift. I believe I have been blessed with a gift too! Many, many gifts! And I am so thankful for each one!

Monday, March 19th

I finally have a small second to give a little update....
Tabby is doing okay. Her seizures are driving us crazy and I am really frustrated! Not near as much as she is though...
She has also been having some strange diarrehia (sp?) again, I am waiting to hear from the GI...I am sure they will probably want a stool sample.
Just wanted to give a quick little update and to ask for prayers for Tabby....we want more than anything for her seizures to stop. I am not sure if they are stomach related, allergy related, seasonal...such a guessing game.

Wednesday
March 28, 2007

Tabby's seizures are not any better. Yesterday was Horrible! I talked with her neuro today and he is putting her on dylantin. Her blood levels and liver will have to be monitored with this medication, so that means frequent labs in the near future. Tomorrow we go to her reg. ped. to talk about this diarrehia.
We are supposed to have a IEP meeting tomorrow for Tabby to enter the classroom on April 10th. I am not sure if we should do this or not! Agh!
I will try to update again this weekend. Thanks for your kind words....they really help my spirits when they are low.

Sunday, March 4, 2007 8:08 AM CST

A moment to update:

Things are going okay around here. I didn't mention seizures last entry...sometimes I think I just want to pretend they aren't there. But they are...I take Tabby this Tuesday to have her VNS adjusted again. It is still cut down rather low from the neuro says. I think he giving her plenty of time to get used to this thing charging at her vagus nerve every minute. She is having good days and bad days w/seizures. Over the last couple of weeks with weather changing and a stomach virus, it is no wonder her seizures have been acting up. This is always how it has been.
Last week she went to see the feeding therapist and she was very proud of how well Tabby is eating and drinking BY MOUTH. I am too! Tabby can eat as much as a 1/2 banana or potatoe at one time now. And she is actually sucking on sippy cups to drink. I need to start counting how many calories she is getting by mouth verses the tube...this may not sound like much, but some of you know how big it really is! I hope it keeps progressing.
Also last week she got casted for her 3rd pair of AFO's, and saw the dentist. He will clean her teeth and fix a couple as an outpatient procedure this summer. His waiting list is that far out.
Bradley is loving karate! I have never seen him so excited about something and I am so glad it seems to be taking his mind off of other things. I hope he keeps progressing too!
Thanks for coming by---

Friday, February 23, 2007 9:50 AM CST

Wow-I guess another update is long overdue....
We have been so busy lately!
First of all....Tabby's thyroid was fine. She has been fighting a stomach bug for a couple of weeks now. I have had her at the GI doc once already, she has another appt. March 9th (I think), if we need to go back. Last weekend she had a bad head cold, which is one reason for my lack of updates.
We are getting ready for her to start attending the classsroom after Spring Break. She will be going 3 days a week for a 1/2 day. We have already taken her to school for related arts and that seemed to go very well. Micheal and I were very impressed with the school, faculty, and the peers that work with the special needs class. Those kids are really amazing! I am very impressed with the way the school teaches them about children with special needs. I think that is so important.
On another note....Bradley had to have a scoliosis x-ray done this week. There was a area of his back that had been concerning me. He does have a 5 percent curviture (sp?). This is nothing to be worried about right now, but we will have to monitor it as he grows. He will also be starting karate next week, so I will probably be even more busy with Tabby going to school, and Bradley going to karate added with all the things we already have going on! But I think this will be very good for him.
I would also like to add a congratulations to Tabby's OT who had a healthy baby girl on Wednesday night! We are so happy for her and the new addition to her family!
Thanks again for coming by to check on us.....I feel like I'm forgetting to add something here....don't ya hate that feeling?

Thursday, February 8, 2007 10:53 AM CST

Sorry I haven't been so good about updating lately....I guess I have just been Soooo busy!
Tabby's opthamologist appt. went great! No glasses need right now! Yaaaay!
We went to her regular ped. this morning and Tabby is 41 pounds and 45 inches tall! She is as big as a 6 year old according to her doctor! Everything looked great. She did have some labs drawn to check her thyroid level since that is recommended with children with the 1p36 deletion.
We also will meet her temporary OT today that will replace her previous OT while she is out on maternity leave. We will miss you Marybeth! But I know this is one of the best times of your life! You are going to be a Excellent mother!
Tommorrow she sees the GI doc and also the Genetic doctor. I will try to update about those appts. this weekend.
Next week, she is having a dental cleaning and check-up! Don't that sound like fun?
School is going great! Next week, Tabby will go to a related arts class at her school to kind of help her get used to going....she will start attending class probably in late March or early April! Her teacher is very sweet and I love the way she is so patient with Tabby! She seems to have such an understanding for special children, which is so hard to find from someone who has not "been there"! She has brought Tabby a ballpit to play in, and also a Yes and No switch for Tabby. I am seeing improvements in Tabby's communication skills! We are very excited with the opportunities school is providing for Tabitha, but we sure do miss her old teacher!
Well, I think I covered everything but the VNS.....we are still working on getting it adjusted correctly for Tabby. This could take a few more months. I honestly can't tell there are any less seizures than usual, I really think she's having more. But the recovery time is very quick. The neuro still tells me it is not cut up enough to even notice a difference right now, but I am anxious!
Thanks for visiting, and don't forget to drop me a line and let me know you were here! I love hearing from you!

Saturday, January 27, 2007 6:48 PM CST

Just a quick update to let you all know that Tabitha is doing just fine these days....
Seizures are better...the VNS is turned up to 1 mili-amp now. Her neuro says it is really not affective until it's turned up to about 1.5 mili-amps, but we do notice that it makes a difference in recovery time. Her seizure activity has decreased some, but she still is still having a break-throughs every now and then. The last being Monday morning. It seemed to pretty much wipe her out that day, but the rest of the week has been good.
Tabby has been so happy and smiling alot! We just love seeing this and I feel other people really enjoy it as well. She has such a sparkle in her eyes....she is so special!
This week is her annual eye exam...I really think her vision has improved over the last year dramatically. I am anxious to see if her eye doctor agrees!
Thank you to everyone who visits and checks up on us.....hope you all have a blessed day!
Love Always........

Saturday, January 27, 2007 6:48 PM CST

Wednesday, January 17, 2007 1:49 PM CST

I had a second to update and wanted to write that Tabby is doing fairly well these days! She has had some bad days with seizures here and there, but other than that, she has been fine! We went to the neuro yesterday to have the VNS turned up again.....I think that is helping some.
I am excited to say that we are in the process of getting a communication system for Tabitha! I really believe this will help her comm. skills really emerge! Her new teacher is salso working on some comm. techniques with Tabby so I am anxious to see how she progresses with this since I am already seeing results! Tabby is learning how to really make it clear when she wants and doesn't want something! Her little tantrums are so cute! I hope that doesn't sounds mean, it's just that those tantrums are precious too me! It is precious seeing her expressions and personality really come out these days!
Next we go to the surgeon for a 6 week check-up-I'm sure this will be a good visit....her 2 incisions look great!
Also in the next few weeks she has her annual eye exam and a dentist visit! I think that's about it for now!
Thanks for coming by!

Saturday, January 6, 2007 3:16 PM CST

Hello again! Tabby is doing great! She also had a great check-up with the orthopedic doctor yesterday! He said her hips have not changed much in the last year! he doesn't seem to be concerned about her back either...which I guess is good!
Tabby's seizures have been controlled well, for the most part. She still is having a bad one "here and there", but somedays I don't see any at all. We are liking the VNS so far! We feel for the first time that we actually have some kind of control over these seizures. That is a good feeling when you often have felt helpless.
This week Tabby has a evaluation for a Communative/Augementive clinic, she also has her annual check-up with the cardiologist! I'm sure he will do a EKG to check Tabby's VSD. We are hoping it is smaller, or better yet gone! He will also look at the shape of her heart, since it is a little abnormal shaped. This has never required any medication, or ever given Tabby a problem so we anticipate a good visit!
Just so you know: Tabby has been a Very Smiley Girl lately! She seems very happy and that makes us Oh So Happy!
Oh yeah! With all these doctor appts coming up, I almost forgot to mention that Monday will be Tabitha's first day of home-school! We are so excited our "little girl" is starting pre-school! She will be home-schooled until the spring (after flu season) and then attend the classroom! Wow-my baby sure is growing fast!
Thanks for coming by to check up on Tabby and all her adventures with 1p36!

Tuesday, December 26, 2006 7:51 AM CST

HAPPY 3RD BIRTHDAY TABITHA PAIGE!!!

Three years ago today you were born. It was not the easiest delivery....but MOST of those memories have faded and now we have your precious smile! There was a day when I wondered if I would ever see you smile at me!
Tabitha, you have had a very special 3 years! You have had many obstacles to overcome, and yet you always come out even stronger than before! We are so very proud of you and your determination. Your Daddy and I both know, that it is that determination that had gotten you this far....

Tomorrow Tabby gets her VNS turned on. I will keep you posted!

Happy Birthday Tabitha Paige!

December 31,2006
New Year's Eve!

Tabby is doing well and we are adjusting to life with the VNS. The doctor turned it on last week, and we have already been using the magnet! He said it wasn't even turned up enough to do any good at this point, she has to build up to that. She has been having several seizures and waving the magnet does lessen the time of the seizure and also her recovery time is shorter!
However, she had a really big grand mal early this morning. I do think waving the magnet made it a little shorter....but I hate those big ones. They are so scary....She has been sleepy all day because of it.
Next week she will be back into therapies and into her regular routine...this will be an adventure!
Tabby also had a very nice birthday! She got plenty of stuff and enjoyed her birthday cake to the fullest! I will try to post some pictures of that real soon!
*I just realized that Tabby has a appointment this week with the Orthopedic....we are praying for a good visit. He will be re-checking her hips and scoliosis. Her scoli has definitley gotten a little worse, but we are not sure about her hips. Last year she had a right hip "coxa valga" (I hope that's the right term) which is a term that could mean Tabby is leaning towards hip disslocation. I pray that this has gotten better over the last year since we have been working so much on standing. She really loves her new stander! I feel that if something was wrong with her hips, she would hate standing.
Anyway, I will update after her appointment.
Also...seizures are better!

Wednesday, December 13, 2006 9:35 AM CST

I finally get a chance to update!

Tabitha is doing great! Her surgery went fine without any complications and she doesn't seem to be in a whole lot of pain right now. We got to come home yesterday after spending the night in the Recovery Unit since there were no available rooms! That made the night seem very long, but as long as Tabby is doing ok, we're ok!

We will go to her regular neuro Dec. 27th the have the VNS turned on. I am praying that this is going to help her tremendously! She will be out of therapies for atleasst 3 weeks to give her time to recover-so it looks like Tabby and I will be doing lots of baking and snuggling the next few weeks!

I am so amazed by the amount of strength my little girl has daily.....she endures so much and waits so long before she lets me know that she is in pain or discomfort. She teaches us all so much.....

Thanks for your prayers and wishes. I will never be able to put into words what it means for all of you to care so much. There are no words. But I can tell you this, it will NEVER be forgotten!

Sunday, Dec. 17,2006

Last week I asked if you all would say a special prayer for our friend, Morgan. It is with a heavy heart that I tell you that Morgan has left us to go live her eternal life with Jesus. Please keep her family in your prayers at this time and for the weeks to follow.

If I don't get a chance to update please all of you have a Merry, Merry Christmas! Please don't forget the reason for the season!

I will try to update before Tabby's BIG 3 coming up! (Dec. 26th!)

Merry Christmas!
Happy Holidays!

Wednesday, December 6, 2006 8:02 PM CST

Well, Tabitha had her pre-op appt. today and her labs drawn. It is always so hard to get blood from her! It took forever! I always hate seeing her have to get stuck and especially when they are drawing blood from her. They just stick that needle in her and dig around-ugh!
I am nervous about the VNS. I really hope and pray it will be a good thing for her. All the other parents I have talked with have nothing bad to say about it. All I know is that Tabby has been on about 10 different seizure meds-and nothing works for her. It works for a little while-and then it stops. They say this VNS will just give her better/more control the longer she has it. That is reassurring.
We will be staying at the hospital for one night with this surgery....that is really what I expected.
We really appreciate your thoughts and prayers.............
Everyday I look at my children and I thank God for both of them. Bradley is the wonderful little boy I dreamed of having when I was carrying him. And no, Tabby is not the little girl I dreamed of having when I first leanred I was carrying a baby girl. But I believe she has taught me more than anyone I have ever met. What's funny is that I look up to her. Her strength, her ambition, her good-nature. She's only 3 (almost)and yet sometimes I feel she has so much more to offer people than I do. And Bradley-he is going to be a wonderful young man, I just know it! He is the most thoughtful, loving, and considerate child you have ever met! Ok-enough from me!

I would like to take a moment and ask that you say some special prayers for a dear friend of our's.....Morgan. Morgan has a Mitochondrial disease and it is beginning to takes it's toll on her. This family is one of the best you will ever meet! They are always reaching out to others and now they need us! Please pray for them....

Saturday--December 9, 2006

I can't believe Tabby is having surgery Monday. It just seemed to sneak up on me!
Yesterday we went to vist the preschool classroom at the school Tabby will be attending in the spring. We are waiting until then so cold/flu season will be over since she is so succeptable to these things. We also met with the teacher and had her IEP meeting. She will start out recieving homeschool until the spring. She will get 3 hours a week, plus her regular therapies. She sure is going to be busy!
The teacher seemed really nice and very educated with special needs children. It is hard to believe my baby girl is almost 3 and getting ready for school! Wow!

I will try to update at the hospital and let you all know how Tabby did with surgery---if I'm not able to, just keep checking, I'll update as soon as I can! Thanks so much for prayers! We are hoping/praying so hard that the VNS will help Tabby as much her doctors' believe it will!

Saturday, November 18, 2006 8:14 AM CST

We are home! All in all, we feel like our trip to Memphis was very productive and we have learned more about Tabby! She will indeed be getting the VNS surgery at the soonest possible date! Her regular neuro is having it arranged at Vanderbilt although they wanted to do it before we left Memphis but couldn't because of the risk of certain complications from her Valproic Acid. It will probably not happen until after Thanksgiving, but we are very excited and are fighting to have it done as soon as possible. It can take months or even years to get the VNS adjusted just right, so we need not waste any more time!
Dr. Clarke at Le Bonhuer Children's Hospital was a fabulous guy! About 2 years ago when Tabby had a 48 hour EEG, a doctor told us she was completely brain damaged and would not ever be able to do very much. Dr. Clarke made sure that he stressed to us that this doctor was wrong! He wanted us to understand that although Tabby does not have alot of physical abilities, she is "in there"! She is aware of things! Of course we knew this, but to hear it from a non-bias doctor was the highlight of my trip! To tell you the truth, I have often wondered how much Tabby was aware of, and Dr. Clarke said she is aware of things-she just shows it in her own way! Thank you Dr. Clarke-we needed to hear that! I will go more into what her MRI, etc. revealed at a later date.
So, we are just preparing Tabby for surgery now by slowly weaning her off the Val. Acid and beginning a new med. This new med is a bit stronger, and makes her very tired sometimes, but she will get used to it. We have to do what's best for to keep those nasty seizures away!
We are so happy to be home and will probably just spend the weekend here getting ready for our family to come over on Thanksgiving! We are cooking dinner here again! We love having everyone over and the kids like it alot better too! (All of their stuff is here!)
We have surely been reminded of all the things we have to be thankful for and I hope that Tabby's story will remind you. God is good! Even though it doesn't always seem like it, and sometimes I have wondered if he's even there, but it's moments like what I mentioned above...when I know. God IS there! And He has it all under control. Sometimes we just have to remember to "Let go and let GOD".
Happy Thanksgiving and hug your children everyday!

**UPDATE**
Wednesday, 11-22-06

Got a phonecal this morning and it looks like Tabby will have her pre-op labs drawn on the 6th of December. After the labs, we will meet with the neurosurgeon for a consult. The following Monday, which will be December 11th, Tabby will have her VNS surgery. Looks like everything is set up and we are just waiting for December now! I will post any changes or updates as needed! I really appreciate all of those who have called and sent Tabby mail--our grattitude is unspeakable!
By the way-Tabby is doing fine. She has been having a rough time with the med changes, but the last couple of days, she has seemed a little more like herself. Still kinda lazy and sleepy, but that's to be expected.

I hope you all have the most blessed Thanksgiving holiday! We all have so very much to be thankful for, don't we?

Tuesday, November 14, 2006 8:05 AM CST

Just wanted to give an update from Memphis....
Tabby is hanging in there. She is miserable as you can imagine. She has had some good seizure activity, so hopefully this will help with testing.
They were unable to perform the MRI yesterday due to sedation failure. Tabby's oxygen sats got really low, so she will have to be tubed (breathing tube) for the MRI. They will do it after the EEG before we leave, since they cannot do it while she is hooked up to the EEG.
She keeps trying to pull off the bandages and wires from her head, and I don't blame her! Somehow, she still manages to give us an occasional smile!
The hospital and staff here are really great-I like this hospital so far.....it is really clean! The staff has really gone the extra mile to make sure Micheal and I are comfortable! They are so sweet and compasionate.
I have no idea how much longer we will be here. Atleast a few more days...I do have internet access in the room, so I will keep you posted with any developements.
Thank you for your prayers!

Wed.--Nov. 15th
Just a quick update from a tired Mom....Tabby is still hanging in there. She is still having lots of seizure activity and we have talked to the doctor about it some. From what he has seen so far he thinks Tabby might be a good candidate for the VNS. He wants to look at her MRI first, which is scheduled for tomorrow sometime. She will be intubated for this procedure. We are expecting to be here atleast until Friday. Tabby is going nuts with the EEG still hooked up to her, but this is best for now. We want to make sure they can see all of the different seizures Tabby has. And she has had several different kinds since we've been here. She has really kept the nurses on their toes!
We are awaiting for the doc to make his rounds now.....we are hoping they have captured enough activity to get the EEG off-we'll see!
Thank you for your prayers and phonecalls....our grattitude is immense!

Monday, October 30, 2006 7:58 PM CST

Well, I believe Tabby is beginning to get over the horrible cold she has had for the last week! She still has a cough, and a runny nose, but she is much better in all.
Now, it is also Bradley that has some kind of cold/cough going on. His cough sounds much worse than Tabby's does. His cough is more of a deep, barky sound. I hope he can go trick-or-treating tomorrow! He would be so disappointed if he didn't feel like it! Oh well, we may just have to have a party at home this year!
We are getting closer to Tabby's Nuerological testing in Memphis. We will be leaving November 12th, a little less than 2 weeks away. Since some have been asking me about the testing that will be done, I thought I would explain it a little deeper for those that are interested.
The tests that are going to be done are going to find out the exact type of seizures Tabby is having and exactly where they are coming from in the brain. The information from these tests will help her doctors decide whether or not Tabby could benefit from a epilepsy surgery or other treatments. The tests that will be ordered are:
~MRI
~Continuos video EEG monitoring
~SPECT (Single Photon Emission Computerized Tomography)
~Neurophyscological testing
The MRI at the hospital where Tabby will be is set up to take special views of the brain of patients with epilepsy.
It will also provide detailed information about the shape of Tabby's brain.
The SPECT is a test where they inject a radioactive chemical into a vein by IV. This test will give pictures of the blood flow to each part of Tabitha's brain during seizures and also when she's not having seizures.
The Neurophyscological testing will last about 3-5 hours. I guess they will just ask us alot of questions and observe Tabby. (?) I'm not too sure what to expect with this one.
The EEG is that test where they hook a million electrodes to your brain and then glue it on with this really stinky airplane glue stuff. I'm sure Tabby will just LOVE being hooked up to that for a week!
It's going to be a drag, but hopefully these tests will give us new information about Tabitha. Maybe there is a better treatment out there for her and we need these tests to find it. Whatever the reason is, I know God is watching over us! (and we also have a bunch of angel friends!)
So, I hope that clarifies a little better about the reason we are going all the way to Memphis for this testing! Please say a extra little prayer for us that week!
Thanks for coming by and I will keep you posted on the latest!

Tuesday
November 7th
I'm not sure if I'll have a chance to update any before we leave for Memphis-so I thought I would go ahead and give it a try. We are beginning to get a little nervous about the trip, but hoping it will give us some new information and maybe some new ideas for a better treatment for Tabby. She is still having seizures everyday. Not near as frequent as they used to be, but then again, everyday is different.
After meeting with the other 1p36 families and seeing how well those girls could eat by mouth-I have became a little more aggresive with Tabby's eating. It has been paying off! She is doing very well and is eating some everyday! It seems like each day she will tolerate a little more than the day before! We are very pleased with this progress! I figure that's one thing we can work alot on next week while in the hospital too.
More good news.....Tabby did amazing standing yesterday in PT! It looked like the PT was holding her up-and I asked her how much of that is Tabby doing? She said, "Well, I can't hold her up like this!" In other words, Tabby was doing most of the work herself, and she sustained it for atleast 10-15 seconds! She also did some great sitting! You would think after almost 3 years of trying to do things you can't do that Tabby would get tired of trying, but she never does! I am so proud of my little girl!
I don't know if I'll have computer access at the hospital or not. If I do, I will try to keep you all updated as much as possible. If not, I will update whever possible.....
Please keep Tabby in your prayers next week. Pray for patience for her with all those wires hooked to her, and pray for informative results. And also, knowledge for the good doctors that will be over her care.
And while you're at it-throw in a real small one for me and her Daddy too!

Monday, October 23, 2006 8:39 PM CDT

Well, our 1p36 get together was amazing! It was so wonderful to meet other families who knew what our life was like! All of our girls had similarities! It was so interesting talking and getting to know each of the girls!
I felt like I was getting together with family! All of the families were amazing and so nice! We have made some great friends! Can't wait to see all of them again! Tabby just loved it! She was having such a great time until Sunday. Her seizures started slowly increasing. She started out with the partial ones then she had a breakthrough seizures Sunday morning. Today has been one of the worst days she's had in awhile. I called her neuro and he said to have her levels checked again.
So, we will be doing that this week. They will also go ahead and check her thyroid for the annual testing while she is there having labs done anyway. I will keep you posted on the results of both of those!
Another reason we suspect her seizures are acting up is that we think she could be coming done with some kind of stomach bug or something. She is wrecthcing after her feeds. It seems to be getting worse as the night comes on....I hope tonight is not a long night. If she is coming down with something that would explain the increased seizure activity the last couple of days.
I will keep you posted and thanks always for your prayers.

10-24-2006
Tuesday

Well, Tabby doesn't have a stomach bug. (good news!) But she does have a bad cold. (bad news) Hopefully she will get over it soon! It's no wonder with the change of weather we have been having! Another thing that is good is that her seizures have backed off today, so that is great. I'm not taking her to get her levels checked until she gets over this because I don't think they would read correctly anyway.
So that's the scoop for now! Thanks for coming by and I'll keep ya posted on Tabby as the week progresses!

Friday
October 27,2006
Tabby is still struggling with that bad cold! One day she seems better, then the next she seems worse. She still hasn't ran a fever with it so that iss good. She is hoarse though, and real congested. I'm pretty sure it's just a bad Upper Respitory Infection. But, if she's no better by Monday, I will take her to the doctor.
Seizures are much better....she is only having 2-5 a day. And those are very quick ones. Her body always goes through alot when she comes down with anything.
Thanks for coming by to check on Tabitha! Don't forget to let us know you were here!

Thursday, October 19, 2006 10:05 AM CDT

Things have been pretty good this week, for the most part.

The week started out a little rocky for Tabby, with some rough seizures, but they have seemed to calm down now.
Tabby got her new stander this week! We love it and so does Tabby! I will post some pictures next week!

We are getting ready to go out of town this weekend to meet some other 1p36 families! This is going to be so exciting for us! I'm sure it will be a wonderful experience, and I can't wait to tell you all about it when we get back!

Thank you for coming by and always sending your prayers our way.....

Saturday, October 14, 2006 8:30 AM CDT

Tabby is doing okay. Seizures are acting up again. THe last week they have been off and on. They can be such a bear. Last night she was having a hard time sleeping because of them so I gave her diastat.
We are excited about going to meet other 1p36 families next weekend! It will be nice to get out of the house too!
I will update again soon!
Thanks for coming by!

Thursday, September 28, 2006 8:14 PM CDT

Things are going well for Tabby and the West household! She has been a very happy girl this week! She is rolling around and smiling so big! All we can do is smile and laugh with her! She is such an amazing girl! She is trying so hard to move herself around! It is coming along! Just give her time!

Bradley is doing well too! His grades are coming up now that he is getting back into the groove of school! He is such a good boy and he tries so hard to make us happy!
I am so proud of both of them!

Next week we have a Feeding Evaluation at Vandy. I am hoping Tabby will be able to get some special help with her feeding issues so we can move forward with her eating more by mouth. I will keep you posted on how that goes.

We are so excited about our 1p36 get together next month! It will be so wonderful to meet other little girls like Tabby! That's right-all that are attending have little girls! I will post pictures!
Next month I will also be attending a luncheon honoring special mothers! There will be a special guest there too! I am very much looking forward to this and can't wait to see some very special friends of mine!

Wednesday-October 4,2006
Tabby got her flu shot today. Doc also looked at a bad bruise on her foot. She swings her leg when she's trying to go to sleep.
Tomorrow we go for Tabby's feeding eval. Fingers crossed. She is having a good week. One bad seizure early Tuesday morning.
Bradley is out of school on fall break.
I'll let you know how the eval. goes!

10-8-2006
Tabby's apptointment went great with the therapist at Vandy! She was very intelligent and had alot of ideas! Tabby has been doing very well eating by mouth until today. She has been so sleepy this weekend for some reason. She accidentally got a sunburned yesterday and I feel like the world's worst mother! I just never thought I would have to worry about that in October-but with her meds, I guess anything is possible. I am never going without sunscreen again! Even if it's December!
All in all-things are going well for us! We have another busy week ahead-I will update again soon with some pictures-I promise!

Monday, September 18, 2006 7:41 PM CDT

Hope everyone is enjoying the last few days of summer! Fall is almost here! I love the fall! The weather, the leaves....I just wish the fall loved Tabby. It seems like anytime the seasons change, she always has hard time.
Here lately she is still having runny nose, runny poops, and having more seizures. She had 3 bad ones yesterday, and I can't even begin to count how many little one's she's been having. Her medicine levels are good, so that doesn't need to be adjusted.
Which brings me to the testing in Memphis...we got it scheduled for the week of Nov.13th. The girl told us to expect to be there for atleast 5-7 days! I was not expecting that long of a visit, but I guess that will be good for Tabitha to have such in-depth testing. She will be hooked up to the EEG the whole time! I'm sure Tabby will just LOVE that! She sure is a wiggly girl! And she loves to roll around on the floor! She has been rolling everywhere these days! The look of pure satisfaction on her face is priceless! I just hope being in a bed for a whole week is not going to set her back any.
I will update again real soon-I want to add some new pictures!
I thank you all for coming by and reading about all of our adventures!

Sunday, September 10, 2006 6:33 PM CDT

Well, I thought I had better update while I had a second!
Tabby has been very well, still! Her seizures are much better since we went up on her med! She had more labs drawn last week, we will know those numbers probably tomorrow. She is still having seizures, but the control she is getting is much better than ever before!
We went to the neuro last week. He is referring Tabitha to a hospital in Memphis for some in-depth testing. She will be admitted for about 3-4 days. They will do a EEG, CT scan, and lot's of other tests that I've never heard of! This will give us a exceptional look at Tabby's brain. Maybe we can find a better treatment option for her if need be in the future. Her neuro seems to want to be trying something else. I am happy because as I said, I think she's doing better than ever as far as seizures go! I do definitley want these tests done though. I think that is good thing!
Soooo, this week we got our regular therapies, TIPS ( a wonderful program through early intervention!), and also...we are starting a new prgram through Vanderbilt Hopsital called TREDS. They will work with Tabby, us (parents), and the school system on teaching and developing Tabitha's communication skills! I am very excited about meeting them!
Bradley has Open House at school this week too! I am looking forward to that also! His teacher seems very nice and has high expectations of the class, which I think is great! Bradley has been rushing through is work, though. So we are having to work on that a little bit! He is a good kid-if you've ever met him, you know how true this is!
Another little exciting thing happening next month is a friend and I who has a little girl with 1p36 syndrome, have organized a get together in KY next month! I am so excited to meet another family like mine!!! Her liitle girl has the EXACT deletion as Tabitha! (1p36.2) We have mentioned it to some other families, and I think there are more coming along! This will so great to have a 1p36 reunion! I don't know if the hotel will feel that way but who cares! I am so excited about this and I cannot wait to tell you all about it!
OK-I think I have updated very well so I am going to go! Thank you so much for those who are so faithful in signing the guestbook....your messages are so appreciated!
Love to you all!

September 4,2006 - Monday

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Wednesday, August 16, 2006 7:57 PM CDT

Things are about the same around here. Tabby's seizures a little better. Her bad days seem to come on the weekends for some strange reason. Tommorrow I am taking her to the doctor to have her levels checked.
Next week is Tabby's transition meeting. We will meet with the lady who is with the special education division of schools and have an opportunity to ask her our questions, etc. I think we are going to see if we can start Tabby out on a home based program for now. I just don't feel like it's time to put in a school yet. I have many reasons that I will not get into now, but my maternal instincts say, "not yet".
This is a very short update, and I could write lot's more, but I basically wanted you all to know that Tabby is hanging in there. She is making alot of improvements with her physical strength and I can't wait to show you what she looks like with her knee immobolizers on! I will post a pic as soon as I can!
I will try to update a little better this weekend---with some new pictures!

Friday, August 18th
I have a little news to update, and thought I had better do it now since our weekend has already became busy! Tabby had her valproic acid level checked yesterday and it was a LOW 40! It should be in the high 50's for her! So THAT is our explanation for the increased seizures, I am sure! YES! Thank God it' not the medicine losing affectiveness! So, we are going to increase her med, give it enough time to take affect and watch. Just wanted to update, this is such a big weight off of our shoulders, we have been contiplating VNS, surgery, ect. and now we don't really need to think about that right now because this could have been the reason all along! Keep your fingers crossed!

Sunday, August 6, 2006

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From the pictures you can see, Tabby had her Rainbow graduation ceremony, and it was very nice! I think all of the children and noise kinda got to her because she had a big grand mal while we were there and has continued to have them every since. I have given her diastat twice already this weekend and it will help for a couple of hours and then they start back up again. The neurologist that was on-call adjusted her meds AGAIN and we will talk to her regular neuro probably tomorrow. I think her levels are all screwed up right now and she is still cutting 2 very back molars and they are not any fun! There are so many different things that can lower Tabby's threshold....I drive myself crazy trying to find them all and "fix" them! (if I can)
Anyway, as always, it's a waiting game. I was ready to take her to the the hospital yesterday, but the neuro on call reminded me that frequent seizures are not uncommon for Tabitha. It's just that she has had such good seizure control for awhile now, this is almost like starting all over again for me. I cannot settle for the fact that Tabby will have seizures. I have seen her have control for weeks...even months at a time. So I know it can be done! And now that I know that, I can't settle for less! I hate seizures!
Bradley will register for school this week and start back next week. I sure am going to miss my little helper! He is the best helper/assistant and mother could ask for! He takes excellent care of his "Sissy" and it is so obvious to people how much he loves her. I feel so blessed to have him!
I guess no matter how rotten things seem to be sometimes I am pretty blessed in all areas of my life. I have 2 beautiful children that are my world, and a fabulous husband! Micheal is such a wonderful father and husband! I don't know what I would do without him! (I love you baby!)

Thanks for coming by and for your prayers.....don't forget to sign in!

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Tuesday, Aug. 8, 2006
Just wanted to add a fast update. I spoke with Tabby's regular neuro yesterday. He said that if Tabby's seizures continue to increase, we will consider her having another video eeg done. It has been 2 years since her last one. After that, he said we may consider some other options for seizure control. There are some newer medicines out that have some bad side effects, there is the VNS (vagus nerve stimulator), and there is a brain surgery that can be done that sounds quite serious too me. Obviously, the surgery would be our last option. Which would leave us to decide between another medicine or the VNS.
Right now, her seizures are controlled again (for the moment), so he just wants me to keep an eye on her and basically just wait and see if the depekene and lamictal will give her sufficient control. So please just pray that these present meds will work for her. That would be the best thing. I will keep you all posted.....as we "wait and see"!

Saturday, July 15, 2006 11:02 AM CDT

Tabby is doing okay. She had a bad spell Thursday morning. It started around 8 a.m., and she had a big seizure. About 30 minutes later, she had another that was not quite has big. After 3 weeks of no apparent seizure activity, I was really scared to see 2 within 30 minutes. Not to mention, one being a grand mal. I gave her the diastat, she slept for about 2 hours, and then woke up as if nothing really happened. She seemed a little tired, but besides that she was giggling and hollering for her Nana! So go figure. I talked to her neuro, and we are increasing her VA by 1/2 tsp. She is getting 1 1/2 tsp 3 times a day now. Plus lamictal. I know this seems like alot, it is, but Tabby's seizures are very hard to control and the VA with lamictal combo has been the best meds we have found yet for her! I seen no seizures Friday, and then she had a small one again this morning. It was around 8 a.m. too. I know she's teething so maybe that's what is causing them. She always has more seizures when she's cutting teeth.
So after talking with lots of other parents I realize that having dental procedures in an outpatient setting is not all that uncommon. Guess I just try to avoid hospitals at all costs sometimes! So now we're waiting on the approval from insurance and then it will be scheduled.....I'll keep ya posted.
Therapies are going well.....Tabby is sitting unsupported for 15 seconds at the most now. Her progress is very slow, but she is improving. She is still not bearing weight on her legs like I would like. We will keep practing everyday.....
She is now saying Mama, Dadda, Bubba, and Nana. She is clapping her hands for yaaay! Okay, so she started doing it out of frustration, but we have taught her that it means yaay, and she will now do it when we say "yaaaay!" Of course, she will not do these things everytime we ask her too....she is just as stubborn as any kid...but she has shown us she know what it means, and she will do it on command when "she" feels like it! We are so proud of her and feel like she has made huge strides the last few weeks. Maybe because of decreased seizure activity????? Even if it doesn't last long, she did it today! She can do it!
Well, I have really gone on this time......
Thank you for stopping by and checking up on Tabby....please sign the guestbook!

Monday, July 10, 2006 7:12 AM CDT

Well, I don't really have a whole lot to update, which is good, right!?!
Tabby is doing great! Last week she had her first dental appointment. She has 2 areas that are the "beginning" of cavities. Her teeth are relatively healthy considering all the seizure meds she has been on her whole life. They did not clean her teeth though. I was kinda hoping they could do it, but they want her to be in a outpatient environment just to have her teeth cleaned and to fix those 2 areas! I am shocked by this! I am sure her insurance will not cover this because how many people do you know get their teeth cleaned in a hospital? We are going to see the ped. tommorrow, and I am surely going to talk with her about this. I don't see why they can't just give her some gas and sedation. I know we would have to hold her down, but I think I would rather do that then to have her at the hospital, put to sleep and all of that stuff. Then again, I know Tabby can be at high risk for aspiration, awful seizures, and she does have a heart condition. As you can tell, I am confused about what to do so I think a talk with the doctor will do me some good!
Besides that, Tabitha has been wonderful! This past Saturday Tabby and I, along with Tabby's grandmother and great-grandmother had a "girls' day"! We had so much fun! I can't wait to show you the picture of all 4 generations together! We are a good-looking bunch if I do say so myself!
I am awful about updating pictures! I still have pics on my camera from Bradley's last day of school that I need to download! I guess that just means we have had a busy summer!
Bradley is doing good by the way-he will be 10 years old in September! Oh gosh-I am getting old! =0

Friday, June 30, 2006 8:53 AM CDT

Hello again, Tabby is doing okay. I have taken her to the doctor twice this week.....she has Roseola. A virus that causes you to break out in a rash! Needless to say, it has been a busy week. Tabby has not been feeling well at all! I think she is starting to feel like herself again this morning, she is smiling and squealing!

July 3,2006

Tabby is defintley feeling better! She had a wonderful weekend, just smiling and laughing all day! Micheal and I are both "tickled" just watching her! She has been asking for her "Bubba"! Yep-she said Bubba! And she just laughs whenever he gets excited and starts talking up a storm! (don't know where he got that from!) They are big buddies-that is so plain to see!
Hope you all have a great day! Thanks for all of your words!

HAPPY INDEPENDANCE DAY!
Have a happy 4th! Don't forget the price that was paid for us to have our Independance! Remember our soldiers!

Thursday, June 22, 2006 9:38 AM CDT

Just thought I would take a minute to leave an update. Tabitha has been doing fairly well over the last few days. She had a few bad seizures yesterday so we are keeping a close eye on her since she's been showing signs of maybe trying to come down with something.....hopefully it's just because things have been so hectic and not because of some bug! I'll keep you posted....

It has been a very long week. My grandmother who has battling with Alzeimer's Disease is battling no longer. She got her wings and flew to heaven this past Monday morning. My Granny was one of the best women I have ever known. She was a great role model for me growing up, she has taught me more than anyone will ever know. We will miss her dearly, but know that she is much better now. Plus, I know that means Tabby has another special angel pulling for her upstairs! I know all of her angels up there are making sure that she is taken care of down here! I am still truly humbled by the amount of people who have been touched by my Granny and Papa. It was amazing to see the out-pouring of love gathered around my family this week. But I will tell you, it is a wonderful feeling to know my granparents are/were such wonderful people. I am so lucky to have been raised by such a Christian family!

Thank you so much to everyone who comes by to check up on Tabby. I met so many people at the funeral home this week who told me they check up on Tabby and pray for her. That means so much to us! We do appreciate it so very much! You guys don't be shy about signing the guestbook-we love to know you were here! Thank you all!

With Love Always,

Karen

Sunday, June 25, 2006
As promised, I wanted to update on Tabby. She has indeed came down with some kind of virus again....she has had a high fever all weekend. She is resting now and has been most of the weekend. I'm sure she will be fine, I'm just gonna take her to the doc tommorrow for safe measure. I am able to keep her fever down with Motrin and Tylenol so that is good.
I will keep you posted.

Tuesday, June 13, 2006 8:28 PM CDT

Tabby is doing great! She has been on a HUGE roll the last couple of weeks! I love it when she is "turned on"! She is doing well in all her therapies, doing great working on sitting and standing.....eating by mouth a little more each day-which means seizures are better! FOr the time anyway.....but I don't worry about tommorrow anymore...I am just happy for today! I have learnt that you can only take it one day at a time...sometimes only one hour at a time!
Friday we go to the neurologist for just a check up visit. Next week Tabby sees the GI doc. Next month is her first dentist appointment! I am very anxious about that and I have no idea what to expect! Tabby surely has some major sensory issues at times so I don't know how that dentist is going to get a good look at her mouth, but we'll see. I'm sure they know what they're doing!
I do appreciate so much everyone who visits Tabby's page and signs her guestbook. I really use this web page for myself as a personal journal as well as a journal for Tabby too. It means alot when people take the time let us know how much Tabby has touched their lives and impacted them. Thank you all!
Hope you have a great week!

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I know it's not March anymore....but some of us didn't get to donate blood in Katelyn's honor during the month of March, so.......now's a great time to do it! I know her mother would still appreciate any donations made on Katelyn's honor!

Red Cross Blood Drives in Sumner County:
-Tuesday, June 20, Gallatin King Solomon Lodge an Rotary Club at the Masonic Lodge, noon to 6pm
-Wednesday, June 21, Sumner regional Medical Center, 10am to 4pm
-Saturday, June 24, Sumner County YMCA, 10am to 2pm

There ya go....what a great opportunity to donate blood for such a special little girl!

Sunday, June 4, 2006 6:47 PM CDT

Just a little update on Tabby.....
This stomach virus is BAD! She is STILL having bad diarrehia, and this is day 6! No other symptoms...just a very upset tummy. Atleast today I do believe the amount of dirty diapers was down a notch.....
She has had a good seizure weekend, meaning not alot of seizures this weekend. She is sleeping alot....I'll be so glad when she gets back to her old self again...
Bradley has been home this week....it has been nice having here to help out....he does anything I ask!=) I promised him that once Tabby gets all better we are going to have a day of FUN STUFF!
Guess that's about it for now...please say a little prayer for my granny..thank you!

Thursday, June 8,2006
Tabitha is doing much, much better now! I think she is officially over the bug! She has had a great week, doing well in all therapies, so far! She has been very alert and VERY talkative! Guess, all those days of not feeling good have made her have alot to say!
Her seizures....let's just say things are going well.....right now she is having great seizure control! I hope we can keep it for awhile!
Thank you all so very much for coming by and checking on Tabitha, and for always leaving such encouraging guestbook entries....They really do mean alot to me and Micheal.
Hope you all have a great weekend!

Wednesday, May 24, 2006 7:37 PM CDT

I just had to share these pictures with you! I wish I could put up more!
Tabby is doing well....the neuro has increased her depekene another 1/2 tsp. a day. Hopefully this will give her some better control. She is doing better, having only 1-2 grand mals a day where-as she was having 5-10.
She has been doing GREAT in therapy this week! She stood up to the ball for 3 1/2 mintues! YES! That is not a misprint! She also sat UNSUPPORTED for 15 seconds! The PT has also been working with Tabby on sitting up to a bench, and Tabitha has done really well with that this week. We think she even initiated a few moves on her own! She has had a great week! It's times like this that make me so proud of her and her all of her determination! (and mine too quite frankly!) She is a wonderful inspiration...
Tommorrow is Bradley's last day of 4th grade. Wow-I'm getting old! There will ba an award ceremony at his school, and I already know he is getting 2 awards! =) Bradley is so amazing! His comical charm keep us smiling constantly around here!
Thanks for all of your kind words and prayers for Micheal. He still needs them....

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May 31,2006
Hello....just wanted to add a small update. Tabby has came down with some kind of stomach virus. She has had awful diarrehia and a diaper rash you wouldn't believe! Her doctor says it will probably last 4-7 days! Ugh! Hopefully not!
We are supposed to see the GI doc tommorrow. I hate to take Tabby to Vandy when she already sick, yet at the same time the GI doc may be the best person for her to see if she's not feeling any better by then! This has been going on since early Monday morning. She has some kinds of rash on her body that her doctor says is just from having a virus and the heat we are having here. (?) Never heard that before, but ok! Tabby has been outside a little bit-but not long enough that I would have thought it could affect her in anyway!
Anyway, of course seizures are always awful when Tabby gets sick.....enough said.
I will update soon....thanks for your prayers as always!

Friday, May 5, 2006 4:30 PM CDT

I really meant to update sooner, but I really don't have a whole lot to mention.....
One great thing is that Tabitha had her labs done this week, and her SGOT's (liver enzymes) are lower! Yaaay! They are still elevated, but not as high. We are hoping they will just go on back down to the normal level! Until then, Tabby will be having her levels monitored every 2 weeks. That really stinks since the only place they can get blood from her is in her femeral (sp?) nerve which is right in the crease of your leg and pelvis. It looks really painful, and she act slike it is as well!
Seizures are a little better. Some days are better than others. The seizures she IS having are still 'ole nasty grand mals. I hate these! She holds her breath and that always freaks me out! Since her SGOT's went down some, her neuro increased her val. acid by 1/2 tsp. I pray that this works and that this medicine is not the actual cause of her elevated SGOT's! It's always a guessing game isn't it???
I guess that's about all for now. I will update again soon. Thank you to everyone who signs Tabby's guestbook!

Saturday
May 13, 2006
Not much to update on Tabby, she is still doing the same. Good days and bad days. Her good days are more often, though and I am so glad of that.
Tabitha lost her grandmother this past week. (My husband's mother) She had a stroke, and just went down from there. Please pray for our family during this time, but especially my husband, because I know he will never be the same again.
I would like to share some pictures with you all of Tabby with her Nanny very soon. I will put them on when I have more time.

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I want to wish all the moms out there a Happy Mother's Day! It is the best and the hardest job a woman can have! The bonuses are great and the incentives are never-ending! I have been so very blessed with my children, and I thank God for them everyday. They have help make me who I am and because of them, I feel like a better person everyday! I love you Bradley and Tabitha!

Friday
May 19,2006
Just a quick update.....Tabby had her routine labs ran this week, and her SGOT'S (liver enzymes) were NORMAL! Yaaaaay!!!!! We sure did need some good news around here! This means that the valproic acid is not causing her to horrible side affects! This could also be a sign that the prevacid is working or that the gastritis was defintiely superficial. It's just a big circle, the gastritis affects absorbtion and also the liver enzymes. It's really confusisng, but this is great news! Just had to share! Hope you have a good weekend!

Monday, April 24, 2006 8:53 AM CDT

Well, things are okay around here. I guess. Tabitha is still having terrible seizures. She seems to have a day here and there with little relief, but most days, are bad days. I have used more diastat this month! We don't understand why she is having so many. She is getting large amounts of valproic acid daily, yet her level was only 44. Not even therapeutic! Last time it was 55. The thing is.....we have increased her dose twice in the last month! I am so confused! The neuro said VA levels can fluctuate, I have never heard this before, but I have no choice but to believe him. Her liver enzymes were also elevated a bit, so I wonder if that could affect the medicinces absorption? The neuro said not to worry, we just can't go up on the VA anymore right now, and she'll need all the labs done again in 2 weeks. But I am worried. One of the side effects of VA is liver failure. Tabitha hass been bruising easier than ever, but she's never been a bruiser before. It prob wouldn't be considered easy bruising for most people, but for her??? Just little things I think about, call it paranoia!
She also started prevacid last week. We are thinking the bile reflux/gastritis was a superficial thing. No more than say you or I would have. But for precaution, we are giving prevacid and will monitor her in the future probably with another test. So, we'll keep praying it was a one temporary problem. Tabby doesn't seem uncomfortable, but it is so hard to tell sometimes. She can tolerate ALOT of pain!
But right now, my biggest prayer request is seizure control. As I have mentionned before, these seizures are tear us all apart. Especially Tabitha. She is trying so hard to progress, and I see such potential for her. Then she has these nasty seizures and they take it all away. I hate seizures! I don't think I've hated anything quite so much.
Thank you for coming by and have a great day!

Saturday, April 15, 2006 7:52 PM CDT

Well, I do have alot to catch up on. Let's see, where do I start? Tabby had a upper gi and swallow study. Looked okay. Food moved through and didn't "pool" up like it did a year ago. Yaaaay! We are so glad to know her esophagus is not "immobolized"! The doc thinks she can potentially do well eating food by mouth as long as we can keep her seizures under control and she is having good days.
Okay, so Tuesday Tabby had a endoscopy. She handled sedation very well. I could tell she was a little nervous about being at the hospital. Not all of the results are in yet, because the doctor took some biopsies of a few places that didn't look so good. Without going into a lot of details, Tabby is having some gastritis. He said he could'nt tell exactly how severe it is just yet. (waiting on biopsy results) The gastritis is being caused by bile refluxing into her stomach from her small intestine. She will probably start by taking some antacid medication, I am assuming. I don't know what is making her bile reflux and I have many questions wrote down for the doctor. I am hoping to get more answers this coming week.
Needless to say, this could be why her seizures are so awful lately. I have had to administer the diastat twice within the last 2 weeks which is alot considering I haven't had to use it since her relapse on Christmas night! Today has been better for her, and I hope she can have a good Easter tomorrow.
I will try to post more information as I get it. Thank you for coming by! Have a Happy Easter!

Tuesday
April 18,2006

Well, I spoke with the GI and all of Tabby's biopsies came back normal! Yes! I am so happy to hear this! We believe the bile/gastritis that was in her stomach could have been caused from constipation from the test barium study she had the week before. We are going to try some prevacid for a little while and take it from there. If there wass anything serious going on the biopsy would have shown it.
Seizures are still acting up a bit. We went to the ped. office this morning for level checks and CBC.
I wish we knew why these seizures were acting up so much! It aggravates me to no end knowing we cannot control these things with medication! I feel with medical technology there should be a way without surgery and with medicine! Ii mean, they can make meds for everything else!
Oh well......thanks for coming by..have a great week! We appreciate every single message left in Tabby's guestbook!

Saturday, April 1, 2006 8:47 AM CST

I wanted to update since we've had such a busy week! We have really gotten so much accomplished this week! Let's see....Tuesday, Tabitha got casted for her AFO's. This went so smoothly I was shocked! It took us longer to get there and back home then the actual casting! Tabby did wonderful!

Thursday we went to the GI doctor. He wants Tabby to have a swallow study and a upper gi next week. The week after that, he has scheduled a endoscopy for Tabby. This will give us a better look at Tabby's structure. We can find out if Tabby's esophagus is better worse than last year. (or the same) She will have to be sedated for the endoscopy, but she has handled sedation well the last few times so we are sure she will do fine this time too.

We also went to the snoezelyn room on Thursday! This is a sensory room just especially made for those like Tabby. It was so cool! Tabby immediatley calmed down when we entered the room. It was dark with calm music and calm lights. I have more pics if anyone wants to see. I took pics of their ideas so I could try to rig up some things for home. We want to thank Miss Sue so much for setting this visit up for us and the wonderful school for letting us come to see! I don't think this is something they do everyday, and it meant alot to us!

Tabby is generally doing very well. Her seizures are still acting up which is nothing unusual. We have went up on the VA again in hopes of better control. Even still, she seems happy always and had such a personality now! She has become very opinionated and is NOT shy at all about letting you know what she thinks! (must take after her mom!)

Well, that's the longest entry I have made in awhile! I'm sure there will be more to share in the weeks to come. Thanks for stopping by.

April 5,2006 Wednesday

Tabby had her Swallow study and Upper GI this morning. The whole test took us about an hour and a half! She didn't like the barium, and hated being held down! (of course, who wouldn't hate that?!?!) I haven't talked to the GI doctor yet, for the final results, but I do know that her diverticulum still looks the same as last year. The speech pathologist that performed the SS said she still does not need to eat food by mouth. SO I know things haven't improved in that area either.
I do know that her surgery is looking good and intact and she hasn't re-herniated. So we'll see what the doctor says.
She also has her endoscopy next Tuesday. Praying hard for a good procedure that day because Tabby will be sedated for that one. I know she'll do fine, but anytime your baby is sedated, you get a little nervous!
Please say a prayer for Tabby to have some seizure control. Her lamictal level has gotten toxic again and she has been having some rough seizures the last 2 days. We FINALLY got a hold of the neurologist (don't get me started ont hat one!) and we are going down on her lamictal. He also wants to go up AGAIN on her depekene which means more screaming and teeth grinding for the next few days! So, we're praying this med change will help her little body out. She is so tired from these seizures and so am I. Sometimes I just want to scream when she has one because it feels like someone is sticking a knife through my heart. That's the only way to describe it.
Well, it's not at all like me to write so much, I must have needed to do some venting! Well, thanks for reading! We so much appreciate your guestbook entries. They really lift us up on those bad days....have a great day!

March 24,2005

Just wanted to write a quick update. Things are still going pretty good around here. Tabby's seizures have increased a bit, but they are very quick and short. Not the big, convulsive ones that really bug her....the neuro says give her annother week and see how she's doing. We are still experimenting with the valproic acid anad lamictal. Finding the right dosage of both can take a little time.
Next week is gonna be a busy one! Braddley will be out on Spring Break, he has an eye doctor appt. Tabby is getting casted for her 2nd pair of AFO's on Tuesday, Thursday she has a GI appt. And maybe if everything is going well, we may go to the snoozlynn room! I hope Tabby is up to it. (and awake enough!) I would love to see how she reacts to it.
So, we are going to be busy next week! Of course I will update after our appts....I'm anxious about the GI. It's a follow-up from last year when they told us Tabby's esophagus was becoming immobile. She is strictly button fed still, with "fun" foods by mouth. Which how much she can tolerate often depends on the seizure activity. Here lately though, her swallowing function has not been it's best. Even with her seizures more under control....that's my reason for a follow up. The GI we saw last year didn't see a reason for a follow-up. She said she would'nt even give Tabby fun foods by mouth. I didn't like her very much. She just seemed very frazzled and scattered. So we're going to see a different one this time. Anyway, I'll keep you posted.

Thank you so much for stopping by. Hug and kiss your family today.

Friday, February 24, 2006 1:30 PM CST

This is Tabby and mom here. Mom is typing this for me since I can't type yet. (just give me time!) Anyway, things are still going well around here. I am feeling better than I have in a long time! Mommy thinks it's my new medicine. She thinks it makes me stay up all night, too! She is really tired, but it's ok because I am having less seizures!
We go to the neurologist Friday (3-3-06). He just wants to ask my parents a bunch of questions about me. He just wants to make sure I'm doing ok with my new medicine since it has a bunch of side effects.
I am doing alot of cool stuff in therapies. Mommy says she's really proud of me. She says you can tell from my face that I am proud too! She really likes it when I make those kind of faces! She really likes the way I smile all the time too!
There are a bunch of people that need our prayers right now. My Granny (mommy's grandmother) has not been doing well. She has Alzeimer's and had setback last weekend. Please pray for her, my mommy loves her very much.
My friends Morgan and Taylor need our prayers too. Morgan had surgery yesterday and is in the hospital recovering, and Taylor has been in the hospital all week. She doesn't feel very good. Me and mommy really love these girls and want everyone to say alot of strong prayers for them.
Thank you for coming by and checking up on me!

Update 3-1-2006
Taylor is home from the hospital! We are so happy for and her family!

Wednesday, February 15, 2006 7:58 PM CST

Okay, I guess it's time for another update, huh? Just been super busy with things lately! Tabitha is doing great! I've kinda been scared to even tell anybody how well she is doing in fear of jynxing things!
Ok, I have to share!
Last week, Tabitha went 24 hours without a seizure! YES! 24 hours! I can't remember the last time that happened. She has had maybe 3 or 4 big seizures in the last week, and that is it! We are used to her having way more than that in one day-so this is major improvement! And, it is getting better as time passes! I pray this medicine will keep working-and so far my prayers are being answered! This is a true miracle too us! We still have one more week to go untill we get to the dose of valproic acid the doctor wants her at. She is still been super squirmy, and extremely talkative! Yes, she will carry on a conversation with me now! It's not with words though, it's with rythmn. I talk in a tone, and she mocks me. She has been smiling and laughing more than I have ever seen in her life! It is so obvious that she is really "in there"! She has been doing great moves in PT, too. Monday, the PT had her kneeling over a ball and we would gently scoot the ball up, and Tabby would crawl, scooting her legs, one at a time back up to the ball! I know that seems like nothing, but it is a HUGE thing for Tabby! She is always trying to get herself up and move around, I just know that one day she is going to do it by herself! She gets so mad when she fails at something, it breaks my heart sometimes, yet I feel so proud that she has that much determination. She is so amazing too me. I wish I knew what was going through her mind sometimes!
Thank you so much for your prayers and for all the sweet Valentine's Tabby recieved! It really means so much to me and Micheal to know that there are so many who truly love and care for our Tabby. She is something, huh?

Please pray for Tabby's friends Taylor and Morgan. Taylor is in the hospital sick and Morgan is having surgery this week.
We love you girls!

Sunday, February 5, 2006 2:52 PM CST

Just wanted to update and let you all know that Tabitha is doing fine. She is still adjusting to all these medicine changes, but for the most part, she is doing well.
Tommorrow we go to have her 1st labs ran since beginning the valproic acid. I am still praying that this medicine will be the one for Tabby....to give her the most seizure control. She is still having seizures, of course. All this med changing is enough to send your body into a frenzy. She has been a handful, wanting alot of attention and wanting to be held alot. And I know she is not spoiled! (HA!-Wrong!)
Her annual opthamology appt. went well. She is a tad bit near-sighted, but not enough to require glasses. He said a check-up every year or two would be sufficient. We'll be back next year!
I will update again soon-thanks for coming by!

Monday, January 30, 2006 7:10 AM CST

Just wanted to give a fast update. Things are going pretty well around here. Tabby is still getting used to the new medicine. She is very figidy one minute, and sleepy the next. Mostly figidy though! I hope this is only temporary because she is a real handful like this! But she tries so hard to move and have purposeful movements. It's hard to see her trying so hard sometimes only to fail. But I know that one day she will.
Tommorrow we will go to the genetic doctor. This is only a follow-up. I don't expect any new developements, but if there are any I will post them!
Tabby also has an eye doctor appt. on Friday. I'll let you know about that one too!
One more thing! I am so happy we got to meet our friends Taylor and Sonya yesterday. It was such special treat to have them in my home! I can't wait to post pictures up of the girls together......I'll get them up soon!
Thanks for coming by!

Sunday, January 22, 2006 8:19 AM CST

We have a busy week ahead, so I thought I would go ahead and update now while I have a second.
Tabbt's neuro appt. went well. He is putting her another medicine called depakene. There are alot of side affects with this medicine, but he said it is one of the best out there. He has been waiting for Tabby to turn 2 to try it on her. I put him on the spot and asked him if it was his child, would he use this medicine. Of course he said yes. The biggest complication is liver failure which is only 1 in 7000, so that's not too bad. We are going to have to keep her levels monitored for the first few months, but that's okay. I am praying that this will be our "miracle drug". I've said a million times if we could just get the seizures under control, everything else is bearable.
Tabby has her UGI tommorrow. I really feel this is just a better safe than sorry test. I don't feel anythinng is wrong, but I will keep you posted.
Tuesday, we have the famous 6 month review for Tabby's Early Intervention. These meetings are so hard, yet productive at the same time. Out of the evaluations I have seen, Tabby looks quite delayed. It's always hard to see this on paper. Especially the numbers. That's very hard.
Anyway, I will update as soon as I can. Thank you all for keeping Tabitha in your prayers. These next few weeks could be tough witht he medicine switches. She has already been extra hyper this morning! Oh boy!

Tuesday, January 24,2006
Tabby's UGI went great yesterday. Her surgery is intact, and there is no sign of a re-herniation either! I didn't think we had anything to worry about, but it's better to be safe tthan sorry.
We also went to visit the surgeon's clinic while we were there. They were very happy to see Tabitha! I didn't know they loved her so much! The nurse changed Tabby's mickey button and we talked for awhile.
Tabby is feeling the affects of medicine switching. She is sleepy, and lethargic. This happens everytime, I figure in a few moree days, she'll be back to 'ole self again. Her seizures are much better-I am feeling optimistic about this med. switch!
Next week we are off to see the genetic doctor and the week after that, the eye doctor! Then we should be done with specialist until March!
Thanks for stopping by!

Tuesday, January 17, 2006 11:36 AM CST

UGH-I am so frustrated!!! Tabby WAS scheduled for a swallow study today. Good thing I called, because it's a Upper GI she really needs! They told me they could only look at her swallow and would not be able to tell us if her surgery was intact and also make sure she hasn't re-herniated. I guess I should've known better-I also feel her doctor should've known better! So anyway...Tabitha will be having a UGI Monday, 1-23-06. I am okay with that only because I feel that if she was seriously refluxing or herniating, she would be sick by now. I also think she would be acting like she was in pain. She isn't, so maybe it's nothing. Dr. Lee said he saw reflux last week, I really feel the seizure reflux is what he saw....but better to be safe than sorry.
We see the nuero Friday, we are going to talk about new meds. Tabby's seizures are better, but not as controlled as I think they should be. (of course, I think they should be gone, but I am being realistic)
I really appreciate all your words of encouragement. Especially all you moms who keep in touch with me via e-mail and telephone. I could not be a good mother if it wasn't for you guys.
Back with another update soon!

Tuesday, January 10, 2006 10:51 AM CST

Well, I guess it's time for another update. Lord knows I have plenty to share!
Tabby went to the ENT yesterday. Her breathing has gotten noisy again, and I was concerned. I thought that maybe her seizures were causing it because it is louder after a seizure. I'm not convinced totally the seizures aren't aggravating her but anyway.....
The ENT doc did a nasalnectomy/nasoscope while we were there. He saw a few things. Forst he saw some fluid on Tabby's left ear. He also saw reflux. This is a big NO NO! Tabby should not be refluxing! So we are awaiting a swallow study to make sure her nessan is intact and she hasn't re-herniated. This has happened twice before, that's why I wouldn't be shocked if it has happened again. She also failed her hearing test on the left ear, so I pray that's only because there wass a little fluid on that ear. Her vision is so limited...God please let her keep her hearing! (A typical prognosis with Tabby's syndrome is hearing loss)
Needless to say, there was alot of information to handle yesterday. I am a nervous wreck right now! Hopefully we can get a swallow study soon.
Next week, we have a appt. with the neurologist, and the week after that. the genetics doctor. It's gonna be a busy month for Miss Tabitha. Please keep her (& Bradley) in your prayers. I know it is much harder for Bradley being a sibling of a special needs child. Much more than he shows. Little does he know, his Mama can read him like a book! So I know it's touught for him at times.
I will post with updates as I recieve them.
Thanks for checking in....

1-16-06

Quick update.....Tabby has a swallow study tommorrow. I will update after that! Thanks for your prayers and you should know, they are being returned!

Image Hosting by PicsPlace.to
Thank you Papa Jack & Nanny Beth for the super cool artwork! We love it!

Tuesday, January 3, 2006 8:13 PM CST

Well, I thought it may be time to do a little update on Tabby since we have been celebrating her birthday for about a month now!
She is doing okay. Seizures are acting bad again. She is having about 15-20 a day. Some of them are just furocious. The neuro has increased her Lamictal, this was a week ago. I hope to see some improvement soon! She still amazes me though. To spite her seizures, she is more alert and more attentive than ever. She tries so hard to "fight" with her body sometimes. She wants to do more than she can and it is so plain to see.
We went to the cardiologist today for our annual check-up. He did a EKG, and a echocardiogram. The good news is that her vsd is so small it's almost unable to find. Her "non-compactable" left side is almost impossible to reconize as well. Her defects are so minor no medication or surgery is necessary. I just wish that vsd would've been gone. She was born with 2 and last year 1 had already closed up. Maybe next year, right?
I guess that's about all to update. Tabby's Christmas and birthday were wonderful. Except for one major grand mal on Christmas night. Before that, she was smiles every mintue. She likes the excitement, the presents, the people.....it just doesn't like her back I guess you could say. Every since that Christmas night, she has been struggling with these seizures. She hasn't been her "real" self since.
Thank you for visiting. I wish you all the best year ahead. With many blessinngs and miracles...whether you see them or not.

Karen
Tabitha's mom

Oh yeah, I almost forgot. Tabby weighed 31.10 today! She was over 37 inches long! (the table wasn't long enough, and it only went to 37 inces!) What a big girl she is becoming!

Monday, December 26, 2005 9:50 PM CST

Today is a very special day, Tabitha turned "2". There was times that I wondered if we would see this day. I thank God everyday for bringing her into our lives. I would like to take this time for 2 reasons. The first thing is to thank everyone that always takes the time to check on Tabitha. It amazes me how total strangers become so close to Tabitha, but I understand how this happens. THANK YOU ALL for being there for Tabitha , Karen & our family.The second thing is just something for Tabitha to read years from now! " Tabby, today is your birthday and girl you have slept all day, daddy understands rough night. I want to know how wonderful you are to me,you are my Hero and best teacher. In the last 2 years you have taught me something everyday,one is to slow up and enjoy life. To be so little you are so strong you have more will power than any one that I have ever known. There has been times that you have made big strong men cry, including your daddy. You have touch more hearts and are very loved little girl, I told you yesterday That moving to 2 Years made you not a baby but a big girl, but you do know that you will always be Daddy's Baby Girl" Love Daddy I could write so much more but the web sites cannot handle that much. Thank You All stopping by and checking on Tabitha Please take a little more time to sign her guestbook .It does us all well Thanks, Micheal "Tabby's Daddy"

Thursday, December 22, 2005 8:41 PM CST

In honor of Tabitha's 2nd birthday, I thought I would write a little about how wonderful these last 2 years have been for me.
The last 2 years have been great to me. Sure, we had our up's and down's, but the up's have been the best up's ever known to man! When we have up's at our house, it means Tabitha gave us a smile, or she slept all night long. It's the little things that you cherish. It's those gazes into your eyes, that let you know she can see you. It's the turn of her head when you speak, that let you know she can hear you.
When Tabby was 3 months old, we didn't know if she's make it to 1. And now that she's 2, I don't feel like she's any different than any other kid sometimes. It's like you get caught up in this world, and you forget that your family is different than all the others in your neighborhood. Tabitha does that to me. She makes me forget she's any different from any other little girl.
She likes to dress up! She loves music! And she is more determined than any olympic runner, brain surgeon, or Hillary Clinton that I've ever known! She is amazing! She will teach you to love, to live, and enjoy your life.
I know I got unusually sappy there, but it's her 2nd birthday!

Happy Birthday Tabitha Paige!

Monday, December 12, 2005 1:54 PM CST

I wanted to update quickly to let you all know that Tabby is doing well. I think she has recovered almost fully from surgery. I'm sure she's still a little sore, but she's acting more like herself these days.
With that, of course, comes seizures. They are changing again. This time she is wretching (because she can't puke) after the seizure. This is very hard to witness for me. I'm hoping these seizures will be short-lived. All seizures gone would be even better!
I really appreciate each and every one of you that continue to check on Tabitha.
Merry Christmas!
I'll update more when/if I have time!

Sunday
12-18-2005
It's been a busy week getting ready for Christmas. Shopping is finally done! Tabby had a rough start to the week with a cold, but is much better now. We took her and her brother to see Santa Clause yesterday and it was a real treat for us. She has never seen him before because last year she had just had a surgery.
Her seizures are the same as usual. She is having some rough ones, but the wretching has stopped for now. To spite the tremmors she has been very alert and happy. She is doiing more than ever and it is amazing to see how far she came in the last year. I can't believe my baby is almost 2! She is a true joy to have and I wowuldn't trade her for anything in the world! She's got a pretty good brother too and I am just so blessed to have them and my husband.
I hope you all have a Merry Christmas. I pray the new year is better than the last.

Please pray for the Kurtz family.

Tuesday, December 6, 2005 7:49 PM CST

Well, here we are 1 week after surgery. Tabby is hanging in there, so to speak. I really thought she would recover more quickly. Last night, for the 1st time, she went 5 hours in between pain meds, and today she lasted 6 hours. So, she is getting better, it's just taking awhile. She's still coughing up a bunch of gunk, and her throat is really sore. Her asthma is still lingering, too. If it's not any better in the next few days, I'll take her back to the doc for that. She has some really bad asthma! She's goes back to the ENT next Wednesday for a recheck/post-op appt.
The last week has been an adventurous one. She has kept me on my toes! Her voice is so much louder and stronger sounding now. She doesn't sound like a little kitty-cat anymore! We love to hear her strong voice! It is a real milestone for her. I am so anxious to see how she'll act once she's back to her old self!
Her seizures are a little better, I think. She is still having about 5-6 a day, but they seem to be loosing strength. Have I ever mentionned I HATE seizures?!? Just checking.
Thanks for stopping by.....hope everyone is being good. Santa Clause is watching!

Thursday, December 1, 2005 8:10 AM CST

I just wanted to update to let you all know that Tabby is doing just fine. She got to come home Wedensday morning, so 1 night is all we had to stay! She did very well with surgery and now is just trying to get through the recovery part. She has been very uncomfortable, so we have to keep her pretty well "doped" up. I will update more in a few days.
Thank you very much for your words in the guestbook. Your entries often bring me comfort in the worst times.

Friday, December 2, 2005
I thought I would update a little more while Tabby is resting. As mentioned earlier, her surgery went well. She was intubated, and her airway became constricted, so they gave her some medicine to make it relax and everything was fine. He said she was a real challenge because her structure is very narrow and small. "Her adenoids were growing into her nasal passage and her tonsils were tiny"., said the doctor. He talked to us about a procedure and another surgery that may be neccessary in the future, but we're not going to worry about that right now. If it ever does become neccessary, it will be in a couple of years so that's enough time for Tabby prove him wrong! After all, she has done it before!
Anyway, she has been really uncomfortable and I'm hoping tommorrow will be better for her. She's on some very strong pain medication, but still seems real uncomfortable sometimes. She was also put on sterroids for her ashmtha-which slows down the healing process. She does already sound so much better though! She hasn't sneezed that much, her snoring is quieter, so many differences already. Sometimes the wonders of medicine amaze me and I thank God for them everyday.
Again, I appreciate all of your words and support. Tabby is one lucky girl to have so many people that love her!

**Mommy put new pictures in my photo album!**
Love,
Tabby

Thursday, December 1, 2005 8:10 AM CST

Wednesday, November 16, 2005 2:40 PM CST

Thought I would update since Tabitha is doing much better. Her bug has flown away and she is acting more like herself! She still has a little cough, and runny nose...but the fever is gone! Her regular ped. and ENT seem to think she will still be fine for surgery which is scheduled for the 29th. (less than 2 weeks away!)
Her seizures are.....well Tabby's seizures. Some days are good, some days are bad. Yesterday she had about 5 that were focal. Today she's only had one (so far) and it was the same. Everyday is different. I sure hope they get better after surgery. Her breathing sounds worse and I think it's about time we get this fixed!
I probably won't update anymore untill after her surgery unless something happens I just HAVE to share with you!
Let's keep our fingers crossed that her hopsital stay is 1 night only and she recovers beautifully!

I hope each and every one of you have a very wonderful and special Thanksgiving. We all so many things to be thankful for! Enjoy your friends and family and God bless!
Thanks for your prayers!

Karen

Saturday, November 12, 2005 5:29 PM CST

Tabby's cold has took a turn for the worse. Since last night, she has been running a low-grade fever, had a cough and runny nose. I am putting Pedialyte in her to prevent dehydration. Needless to say, her seizures have increased with this "bug". Last night she had a huge grand mal that scared even me. You'd think I'd be used to seizures by now, but no....they still scare me silly sometimes.
She has an appointment Tuesday with her ped. that I made to talk to him about her upcoming surgery, but if she's not better by Monday, we will go ahead a see him then.
I pray that she can get over this quickly without putting off her surgery. But, if that's what happens, that's okay too. Better safe than sorry, right?
Thanks for visiting....I'll update soon.

Karen

11-8-05

Okay, so we decided to go ahead and let Tabby have her surgery. The date will be November 29th. It should be a 1 night stay. I think it's best for her to just go ahead and get it over with so she can feel better. She has suffered with this problem for the last year, and she deserves to feel better!
I will update again in a few days....

11-7-05
As promised, an update after the ENT visit. After talking to the doctor for a few minutes, and listening to Tabitha, he immediatley said she needed her adenoids and tonsils out. He also wants to do something called a nasonectomy (or something like that.) For this procedure he will put a tiny camera up her nose and look at her nose, sinuses, etc. structurally. He will do this at the same time, before the adenoidectomy and tonsilectomy. It's really just up tp us as to when it's done. I asked him if it was something needed "ASAP" , and he said no, but the sooner it was done, the sooner she would feel better. He said the tonsilectomy will be very painful for up to 10 days afterward. The average hospital stay is 1 night.
We may wait untill after cold/flu seasosn if she can wait that long. I have to talk to Micheal because I am really stuck on what to do. I want Tabby to breathe better, and feel better. But, if she goes in the hosiptal this time of year, she is such a high risk for sickness...??? I am going to do some thinking about this one. Dr. Lee said she doesn't need to be sick with so much as a cold for atleast 2 weeks prior to surgery...so that could end up being the determining factor. He said if there just doesn't seem to be an available window of wellness, "we would do the best we can". I'll keep ya posted on this issue...
Seizures have been a little better. The grand mals have slowed down a bit, but are always reminding us they are still there! Have I ever mentioned I HATE SEIZURES? She is still having her daily episodes of absent seizures.
Tabitha had a great Halloween this year....we took her around the neighborhood and she enjoyed the ride! There are pictures in the guestbook.
I guess that's about it except for a small cold that has came to visit.....I am giving her benedryll as needed. Hopefully not much longer.
Thanks for coming by and leaving your messages!
God bless each of you!

Karen

11-6-05

Things are pretty good around here. Tabby has a little cold , but is okay. We see the ENT tommorrow and I will update more then. There are Halloween pictures in the photo album. Talk to you all tommorrow!

10-29-05
Thought I would update while Tabby is napping.

Things are about the same around here. Her adenoid obstruction is still "obstructive" and we are just waiting for the ENT next week. Atleast it's almost here. She has a hard time sleeping at times because she keeps losing her breath. Her seizures are maybe a little better, but shse is still having some grand mals every now and then. Mostly just the spasm episodes. The grand malls are gagging her. I know that sounds weird, but she gags.
On top of all of that, her brother hasn't been feeling that good either. He's got a croupy cough. If he's not better by Monday, I'll be dragging him to the doctor's office!

I know this is a short update, but like I said, we are just waiting. I hope everyone has a great Halloween, and stay safe!

Saturday, October 22, 2005 8:33 PM CDT

Things are a little better for Tabby these days. She has been very tired lately. I guess just because of everything she is dealing with right now. Her seizures are a teeny bit better. Some days are better than others. They are still not controlled like they should be. Or like I would want them to be!
Her doc thinks she'll be okay to wait in the ENT 11-7. I wasn't to pleased about that, but there's nothing really I can do about it. I've already called the ENT for cancellations.
I pray for Tabby to get some strength back. These seizures are wiping her out. Her whole body strength is down right now. She's exhausted.
Hopefully this week will be better for her.
Thanks for coming by...

Wednesday, October 12, 2005 8:51 PM CDT

Today started out kinda "blah" for me. You know, we all have those days every now and then when you just feel kinda depressed for no big reason at all.
Tabby woke up, I gave her a bath, she had a pretty big seizure..then she went to sleep. She slept until it was time for PT, which she did pretty good in. She also had about 8 more seizures while we were there. We then came home and I had her in her positioning chair playing and she was so wiped out from the seizures she fell asleep again. She slept most of the day so it was a good time for me to cry and get out all of my frustrations and worries I keep inside because as a mother, we feel we always have to remain strong for our children. I just felt so sad. I cried to God to please make these seizures go away. Sometimes they just drive me nuts! I can't imagine what they make her feel like.
I went to pick Bradley up from school, and Tabby finally woke up around 6 p.m. It was then my day made a complete turn around. My son who seems to be the happiest kid on earth, flashes me the cutest smile and tells me he loves me and that I'm the best Mom in the world. Then Tabby wakes up (after her normal seizure pattern) and does some of the best functional movement I have ever seen! She holds herself so well trying to sit and tries so very hard to use her arms to hold herself up. We had her standing up against her ball and she sustained weight on her legs better than I've ever seen! Then after all of that....she looks at me and gives me, her Dad, and her brother the most precious smiles. Beautiful smiles.
Talk about making my day....if it weren't for my family. My wonderful children. My terrific husband....I would be so empty. It is so wrenching to be the happiest I've ever been in my life and yet so frustrated and sad at times. Whenever I feel like I'm going insane...I cry out to God and he answers me.

Friday
October 14,2005
After my "meltdown with God" the other day, I forgot to mention Tabby's adenoid issue has gotten worse. (which is probably another reason for the meltdown). It seems to be worse at night when she is sleeping. My theory from what I have read is that she has something called Obstructive Sleep Apnea. I have called her doctor twice this week and they have referred her to ENT Nov. 7th. I, however, do not want wait 3 more weeks for a ENT. I am taking her to her gen. ped. Monday morning in hopes of maybe getting him to move the appt. up. The only way she gets any rest through the night is if she is propped up fairly well with pillows which means she has been in the bed with us. I think she has sleep apnea which would be part of the adenoid obstruction.
She also is cutting more molars. It looks like they are coming in on the roof of her mouth. It almost looks like "extra" teeth. She also a a dental appt. coming up to have that issue looked at.
Now that I have went into a little more detail, I guess I can understand myself why I might be prone to having a nervous breakdown! I just don't understand why our children must endure so much at times. So innocent. So pure. Why? Oh well, I guess we just have to go on and be glad that we can! (thanks for that, Deb)
Thanks for coming by and for your words of support. I can't thank you enough!

*new pictures in the photo album-see Tabby at work!*

Friday, October 7, 2005 12:03 AM CDT

Tabby is doing much better since we started the Nasonex and saline treatments. She still sounds like she's breathing through a coffe straw at times, but she sounds much better.
I wish those ugly seizures would go away! They aren't any better, but hopefully soon they will be. Her nuero said we could go up on the topomax, but if that doesn't help we are out of options. She has been through every seizure med she can take. All we can do is be ptaient and hope they will cease. Have I mentioned I HATE seizures??? Just checking.
Tabby has a new OT that will be coming to our house! Yaaay! That will be so much better when those cold months come, and they are getting close!
Tabby is doing great even with the nasty seizures nagging at her. Her physical strength has improved so much over the last few months. Her oral/feeding skills are getting better. She actually bared weight on her arms this week! Yeah, it was only for 3 seconds, but she did it! First time ever! That's my girl!!! I am so optimistic right now! And so very proud!
I hope you like the poem above, I found it surfing the web and thought it sounded alot like my girl. It may sound like your child too. I had to copy and paste it here to share.....
Thank you for checking on my little princess. If you get a second, go visit her brother too. His link is below. He loves visitors!

Saturday, October 1, 2005 12:12 AM CDT

Things are still going pretty well around here. Tabby has been doing very well to spite the nasty seizures she's been having. The big ones have been happening at night, and they can sometimes be pretty scary. She still manages to be in a pretty good mood, smiling and babbling. I do hate those seizures!
As you can see, (check photo album) she got her wheelchair. We love it! It still needs some minor adjustments. Hopefully this week that will be taken care of. Tabby seems to like it.
My daughter's first wheelchair......I hope it's the last.
We received a call from Tabby's genetic counselor, they asked if we would be interested in Tabitha being a part of a study at Baylor University in Texas. Baylor is the only place I have heard of that does any kind of study for Tabby's syndrome. It is the place where Tabby's labs were sent that gave us her diagnosis. I think it's great if Tabby can help educate the medical field more about her syndrome! There is so little known about it seems at times.
I am so proud of her...she has been doing great. It seems like she has progressed alot in the last month or two. I think she has alot of angels watching over her.

TUESDAY
OCTOBER 4, 2005
I took Tabby to the doctor this morning because she is having alot of trouble breathing. Breathing treatments don't help much. He said he suspeccts Tabby indeed does have a obstruction of the adnoidss, but doesn't want her in surgery any more than neccesary. SO....he prescribed some Nasonex spray once a day and a good cleansing with saline spray once day as well. Hopefully this will break all that yucky stuff up. If not, he may refer Tabby to a ENT. He is trying to avoid that for now. So, we will hope that this is something we can fix with medicine! Thanks for checking in.....I'll post again soon!

Tuesday, September 20, 2005 6:18 PM CDT

Tabitha is doing much better this week! She still has a cough, sneeze, and a runny nose...but all in all, she is much better than she was! She has been EXTREMELEY hyper! I don't know where this energy is coming from, but it's almost like she is crawling out of her skin! Whenever she gets these little "bursts" I just try to focus her energy on things like crawling, weight bearing on her arms, and legs, and anything physical! We have a recheck appt. on Friday with Dr. Kastner. I am curious about her weight.

I haven't heard anything else about her chair...I'm trying to be patient. I know they will call as soon as it's ready. I can't wait to show pictures! I know this chair will help improve the quality of Tabby's life and anything that does that gets me really excited!

Thank you for coming by.....

Friday
Sept. 23,2005
Tabby is doing alot better....I took her to the doctor today for a recheck and he agreed. Her cough is much better, but not gone. Another week or so, and I'm sure it'll be history!
SHe did have a couple of scary seizures today. One was different than anything I have ever seen her do. It ened before I had to administer diastat, but I really thought I was going to have to use it. I hope it was just a bad seizure day, and not a new seizure pattern beginning. SHe iss still pretty hyper, which is good. Tiring.....but good! She has been full of herself the last week or so! She's so amazing.
Her chair is ready!!! Should be getting it this week....I will put up pictures as soon as I can. I have had some requests to see the ramp my husband built. If I get a chance, I will put some up soon, Tabby will be in her Leckey chair in those pictures.
Anyway, thanks for coming by....have a wonderful day.

***If you look in the photo album, there are pictures of the ramp Micheal built***
Image hosted by PicsPlace.to
Here's the new wheelchair...sorry, I covered up her name!

This is Tabby sitting in her chair for the first time.....it is being adjusted for her.

Wednesday, September 14, 2005 1:05 PM CDT

Tabby is hangin' in there. She is still feeling pretty yucky. Now, she has diarrehia (spelled wrong), on top of everything else. Everytime she coughs or sneezes, she needs a diaper!
Her fever has been gone for about 2 days, she still has a bad cough, too.
I take her back next week for a re-check with the doctor.
Seizures are not any better, and I don't expect them to be untill she gets over this. I have seen them worse, so I am staying positive!
Thanks for keeping her in your prayers!

Friday, September 16, 2005

Tabby is doing much better! She is acting alot more ike herself! She is still having the bad cough & diarrehia, but all in all, she is much better than earlier in the week. I am so glad! I'm sure she'll be fine to get back to routine by Monday.
And that's good, because I talked to the company that is putting her wheelchair together and it is ready all except for the insert part, which is the seat. So, hopefully that is moving along and we can have it within the next week! That would be good!
Thanks for coming by!

Saturday, September 10, 2005 9:55 PM CDT

Just a fast update while Tabby is sleeping......she has had a really bad day. She started out this morning with a fever of 100.2, then she started having the bad seizures again, I guess because of her cold/fever. She has had several throughout the day. I had the diastat handy, but never had to put it to use. She has been very floppy and sleepy all day long. I guess that's to be expected when she doesn't feel good, but it still kinda leaves me pacing the floor! I have been giving her breathing treatments every 4 hours for her cough. She just doesn't sound any better at all! Her little nose sounds so stopped up! If she'e not any better by Monday, I will take her back to the doctor. Although this afternoon, she seemed a little more like herself, by holding her head up and smiling, she still only stayed awake for about an hour or two. I hope she sleeps tonight!
Thanks for coming by.........
Karen

Monday
9-12-2005
Sorry for the quick updates...I took Tabby to the doctor today and she has the croup and a ear infection. I knew when she woke up this morning she was worse than yesterday. She hass just got worse everyday actually. The doctor prescribed her 4 different medicines. One for cold/cough, sterroids, antibiotics, and ear drops. She has been miserable. Her throat is sore and hoarse, she's kept a fever, and all she does is sleep and cry. (makes me want to cry) I hate it when my babies are sick! Anyhow, I'll try to update later on in the week. We are gonna pretty much be at home this week and hopefully by next week she'll be well enough for therapies!

Saturday, September 3, 2005 6:46 PM CDT

Things are doing well over here still. Tabby is doing good, she has caught a little cold this past week and because of that, I think it has caused her seizures to act a little different. It looks like they're trying to change again which is always scary because you don't know what they're gonna do. It seems about the time we get used to the type of seizures she is having, they change again and it starts over. She is doing great though, rolling over, and trying to get herself up. She is so amazing to watch. She has such a strong attitude.
Bradley turned 9 yesterday which mean I'm getting older. Man! They sure grow fast! Those of you with small children, take advantage of every single day because before you know it, they aren't so small anymore!

Wednesday
September 8,2005
I also made her a appointment with a neurologist at Vanderbilt that I have heard many great things about. I am excited to meet him. I still am going to keep her present neuro...just don't think it can hurt to have 2 of them! That appt. isn't untill November.
Guess that's about it...I'll keep ya posted on the cold situation!
Thanks for coming by....just that alone means so much.

Wednesday, August 24, 2005 6:39 PM CDT

Just wanted to update real fast. (I am trying to do this weekly)

Things are still pretty good around here. Busier, with taking Bradley to school, therapies, picking Bradley up from schcool....we are on the go all the time again! Tabby is doing very well in therapies. She has actually be interacting with us more than ever! This is such a treat for us all! Her smiles and laughs are something very new to us, and we appreciate every second of them! She has been finding all sorts of ways to get through to us. Kicking & screaming, it is amazing!
She is not crazy about standing (in PT) this week...this is something that seems to come and go. Hopefully next week it will be back!
Her wheelchair will be ready in about 3 weeks. I am so anxious to get it! I feel it make everyone's life a little easier. The ramp on the front is built....just got to get some stain and water treatment on it.
Seizures...better. She is having several "drop attacks" throughout the day. The big grand mals seem to be gone again for now which is just fine with us! These smaller attacks are not nearly as fierce, but happen anywhere from 15-30 times a day. The big ones (grand mals) seem to drain her. They seem to wipe away her skills and we have to start all over again. The smaller ones don't seem to do as much damage.

Thank you for checking in on Tabitha......it means so much to us!

Monday, August 15, 2005 12:21 AM CDT

Things are still pretty good around here. Today is the first day of school, so needless to say it is a little quieter around here today. Tabby and I both miss Bradley already!

Tabby is doing quite well. Like I said last time, she is still having around 5-6 seizures a day, but they are alot milder. She is still pretty hyper too! Last night she woke me up at midnight and stayed up untill about 4 am. She is doing this mostly every night. Yes, I am tired!(haha) Hoping that in a couple of weeks she will settle down just enough to sleep through the night. In a couple of weeks she will completely off zonegran and totally reached her full dosage of the topamaz. She is still taking lamictal as well for seizures.

So! I guess that's about it for now....thanks for checking in and make sure you sign in so we know who you are!

Tuesday, August 9, 2005 3:19 PM CDT

Just wanted to give a fast update and say that things are still pretty good around here for the most part. Tabby has been unusually very hyper these last few weeks. I don't know what it is...maybe her med switch. (?) Her seizures seem to be better, but not gone. She has been babbling most of the days.....and nights. She wakes me up around 2 or 3 a.m. and just babbles 'till about 4 or 5. I guess if it lasts much longer I will call her doctor and let them know about it. Part of me kinda likes it because Tabby has always been so hypotonic and lethargic, I like this energy!
Her wheelchair will be ready very soon. Micheal (yes, that's how his name is spelled) has already started building the ramp on the front of the house. He is quite the handy-man! It looks really good! If anyone has to build one anytime soon, e-mail me and I'll send you a picture. Just incase you need some ideas. Nobody WANTS to build a wheelchair ramp onto their house, but if it helps make life easier...by all means, build one, and make it look good! I'm so proud of my husband, he is a wonderful carpenter, mechanic, plumbler, electrician, he's pretty good at the Dad stuff too! He's a really wonderful husband.
Anyway, thank you for checking in on Miss Tabby....everyone says she's doing better than they've ever seen! That's always nice to hear!

*Don't forget to check out The Tumbleweed Foundation...Tabitha is a featured child for August!*

Tuesday, August 2, 2005 3:34 PM CDT

Hi guys....things are pretty ok around here. Tabby is doing pretty good. Still having good days & bad days with the seizures...I like the good days. She is still smiling a bunch..love that!

Sadie Grace went to heaven Sunday afternoon. We will miss her so much. Her & her family mean so much to us that I cannot even begin to write it down. I will always remember Sadie and the first time I met her. I was taken right away. She was beautiful. I have always admired her Mom & Dad too. They have gave me so much inspiration over the last year or so, and they still will. I know we will see Sadie again one day.....but life will be different without her.

Thanks for checking in, I hope things stay this well with Tabby. She has been cracking me up! I love it when she just screams at me! She is really telling me off! It's hilarious!

Tabby is featured on The Tumbleweed Foundation website this month! Check it out!

Thursday, July 28, 2005 4:13 PM CDT

Hello!

I wanted to update and say that Tabby's thyroid tests came back and everything was within normal limits! I'm so glad she doesn't have "another issue" to deal with! Even though it is something we have to monitor annually, I hope it doesn't become an issue anytime soon. (or ever for that matter!)

Tabby has been unsually happy the past couple of days. She has had a few fussy spells in the evenings, but in general her days have been totally opposite of the last few weeks. She has been smiling more than I have ever seen...and others have seen it to so I know I'm not going crazy or delirous! Of course, I know everyday is a different day, so I am just thankful for the present. I don't want to disappoint myself and anticipate smiles everday....since she is famous for her inconsistencies.

*New photos added*
Thanks for checking up on Miss Tabby and sign in so we know you were here!

Please continue to pray for Sadie Grace, this sweet girl will tug at your heart at first glance. She is SO precious! Please pray for her family as well, I cannot even imagine how they must be feeling and how the weeks to come will be for them. You can visit her by clicking the link below.

Monday, July 25, 2005 7:14 PM CDT

Just got home from Vanderbilt. Yesterday Tabitha wass very fussy and having more seizures. One lasted about 4-5 minutes, so I had to get the diastat. I called her ped. and she advised we take her to the ER. So...we did and they admitted her overnight. They did a urine, chest
x-ray, and and Upper Gi since she had one scheduled for Thursday anyway. Everything was fine.

So I guess her seizures are just progressing all on their own. Me & her ped. really thought something may have been goiing on "inside" to trigger them. But nothing. I am glad! Tommorrow we go to the neuro and talk to him abaout her awful seizures and hopefully he will have some suggestions. Maybe a new med? Or increasing an exsisting one.

Glad we had a short visit...one day in that place feels like a week! Thanks for checking up on Tabby, our sweet little girl.....

Monday, July 18, 2005 1:50 PM CDT

I wanted to update while I had a few minutes......

Things are ok. Our vacation was cut very short due to a death in the family. We have been back since last Tuesday, but with this horrible, unexpected news, we have been very busy being with family right now.

Tabby is doing well. We went for her check up today and she is doing fine on the growth charts! (yaay!) We had some blood drawn to check her thyroid since that is one of the precautions with her newly diagnosed syndrome.

I really hate to be so short, but as you can imagine...life has been a a very fast roller coaster these days. We did have one day at the beach and I will post pictures when things have settled a bit more. We should here about the thyroid test by Friday, and I will try to update then.

Thank you for your prayers.....

JULY 20, 2005
Waiting for Tabby's doctor to call me. She has been really fussy the last few weeks, and her seizures are worse. I'm going to see if I can get them to order a Upper GI to check and see if she has re-herniated. I know that may sound crazy....but these symptoms seem oh so familiar too me. I would relax a bit if I knew for sure. Maybe it's just her, or me???? She hates PT...and she usually loves it!

JULY 25,2005 FRIDAY
I was hoping I would have some news about Tabby's thyroid today, but apparently they didn't get enough blood to do the test! SO, we had to go back today and watch them stick BOTH of Tabby's inner thighs to do it over! Frustrating! Now we must wait another week before wew will know the results.
We have a UGI scheduled for Thursday....fingers crossed.

Please pray for Sadie Grace.....
This little girl as well as her parents
are very dear to our family. Sadie has not been doiing well at all and could really use alot of prayers. Please visit her page (link is below) and let her know she has alot of prayers going out to her. WARNING: YOU WILL IMMEDIATLEY FALL IN LOVE WHEN YOU SEE HER PRECIOUS FACE!

Friday, July 1, 2005 9:10 PM CDT

Today has been a day I will never forget.

Today for the first time in Tabithas life, we got a definte answer to our questions. Dr. Hammid called me this morning and told me he had some news. I couldn't get it out of him fast enough. He said that Tabby is missing part of her Chromosome 1. He said that he didn't have the full report of the test results, but he knew that much. He wants to see us in his office Tuesday to discuss further. Wow! As I stood there in shock, (and hives) I asked him if he thought this was the underlying reason for Tabby's problems, and he said, "yes". The words I never thought I would hear. A diagnosis. A reason for the scoliosis, the heart defects, the feeding issues. I asked him if this could'vehad anything to do with her brain injury, and he said probably not. Her brain injury has been concluded to have happened at birth. As far as treatment goes, there is none, for we cannot replace anything the body just doesn't have when it comes to chromosomes, I guess. I asked him for a "name". He said he would have a name for this when he gets the final report. He will probably do more testing on Tabitha as well. When we see him Tuesdaywe will discuss what therapies she can benefit from, what to look for as far as complications, and he said he would show us pictures and educate us as much as possible on the deletion. Apparently this is a rare thing, 'cause he said they would be learning as well from Tabitha.
The labs with the elevated lactic acids and ammonias are of no concern right now according to Dr. Hammid. I'm assuming this chromosome 1 is the answer as to why those #'s are elevated.
As you can imagine, we are all in shock and full of mixed emotions right now. I still don't know if I should believe this or not. I guess it hasn't sunk in. It usually takes a few days when we get big news. At least now we know what we can expect for her, and learn as much as possible about this and accomodate Tabby and all of her needs a little better. I thank God for giving us the answer we have all been praying for for what seems like an eternity.
I am so thankful for Dr. Hammid. What passion he has to find answers for families. He called me this afternoon because he thought I had a question when I really wanted to know if the report was in. I guess the receptionist wrote it down wrong or something. But the fact that he called because he thought I had a question, really impressed me. (again) I wonder what makes a person decide to become a genetic doctor. Sure, I guess he finds it interesting, but have you ever read about chromosomes and genetics? Man, that stuff is hard and very complicated! I could never have the patience to learn as much as he knows. I think it must take a true passion for a person to become so educated on such a subject. Thank God he decided to and has that passion.
I will update after our appointment Tuesday. I really don't know what to expect. I really want to have a name for this and also know what kind of prognosis for Tabby. Your prayers are always appreciated, and as always, you all are in our prayers daily.

P.S. Excuse all the errors....I'll fix them later!

UPDATE
JULY 6, 2005

We went to see Dr. Hammid yesterday and the visit went much better than I had thought. He basically explained to us in more detail everything we talked about on the phone Friday. He admitted that he does not know much about this chromosome deletion because it is just so rare. They are going to continue researching and send us information as they get it. We basically know there is no treatment, and regression is not typical, but can happen due to the fact that this part of the chromosome 1 is the part that controls brain development. The amazing thing is, that the test performed that found this syndrome only became available about 6 months ago. So there was no way to find this before, and it was just a pure miracle that aftere all our families prayers, this became available to Tabitha.
I do have some information about this, and I want to share it with all of you. As the weeks pass, I will be adding links, and facts about this chromosme deletion to share with you guys.
As for now......we are getting ready for a MUCH, MUCH needed vacation. I week at the beach! We all need a little break, as everythig has taken a toll on us all. One week of nothing but pure laziness. I can't wait to take pictures and share them! I hope Tabby likes the beach, and pray that everything goes smoothly. We have never been that far away from home with Tabby. We plan on learning the fastest hospital route once we get there. (just in case)
Thank you all SO SO SO much for checking in, praying, and just being there. Words are just too small to express my gratitude! These last couple of weeks have been tough, but I know I couldn't have got through without the support of my family, friends, and mostly GOD.

Tuesday, June 21, 2005 5:17 PM CDT

Hello friends,

I am here with an update! We went to the genetics doctor today.....he had some news that was not good or bad. (???) He is concerned about Tabby's glutamines, which is something found in our plasmo amino acids. He is thinking we should look at mitochondrial disorders/syndromes. Her glutamines were high in a few of the tests he had performed which is uncommon in a child with ataxia. SO...he had more labs done todady while we were there...and more than likely, we will be going to Atlanta in a few weeks for a skin and muscle biopsy by Dr. Shoffnor. (I think???) He will call us in a couple of days to make it definite, but he said that he recommended it, which leads me to believe that it will probably take place.
Feeling different emotions today.....maybe a step closer to a diagnosis for Tabby? (although Dr. Hammid said all of this could just take us back to step 1) A little stressed knowing my baby may have some kind of mitochindrial disorder? AND, a little relieved that finally, after almost 2 years, we could finally have some definite answers. What a roller coaster of emotions. I know that all you Moms out there with special kids know what I'm talking about.
Anyway, just wanted to give a quick update on Tabitha....like I say up above, it doesn't matter WHAT her dx is, or even if we ever learn about it.....she is one special little girl. And we are devoting our lives to making it the best it can be for her. After all....look what she's already done for us!
Thanks for coming by.

UPDATE:
SATURDAY
JUNE 25, 2005

I am so proud of Miss Tabby I had to add a little update today! She has just all in all had a good day. She seemed happier, and has been smiling more today, which did me good to see beings this week has been a hard one. Her seizures were even better, I only seen her have one brief episode that only seemed to come & go for about a minute. (so much better!) She has been a bit sleepy lately, which is something Tabby has always done alot of anyhow.

I added a link at the bottom, Tabby is being featured because a contest she won. This is her first time winning anything! lol Anyhow, Angel Jen & her sister, Seal, did a great job rewarding Tabby. Thank you guys, it looks really nice!

ANOTHER UPDATE:
JUNE 30, 2005
Waiting on a phonecall from Dr. Hammid, the genetics doctor. Some of the labs taken last Tuesday have came back. All I know is Tabby's Lactic acids and ammonias were elevated. I don't know what that could mean. The genetic counselor that I spoke with didn't knnow either, but said that the next step will probably be going to Atlanta for the biopsies. Which, I thought was going to be a one time trip. After speaking to the receprionist in Atlanta, I learnt that Dr. Shoffnor will do a counseltation (I know I spelled that wrong) type visit first, then make a decision on what to do next. He may not feel a need for both biopsies, or one or the other, or he may want both? Who knows, guess we'll just have to wait and see. Waiting on approval from the insurance company so we can make the appointment and get the ball rolling.

We are planning a much needed vacation in the next week or so....Thank You God! We all need one so bad!
Thanks for coming by, keep praying for Tabby...she still has good days and bad days. There is no consistency.

Saturday, June 11, 2005 11:36 AM CDT

I just wanted to add a little update on Tabby....she is doing pretty good still. She had a couple of rough days this week. Having more seizures and they really seemed to wear her out at times. Except for that one night..I think they got her wound up because she was up all night! I talked to her neuro, and we are going to up one of her meds a notch, so maybe this will help.

All in all she is doing well. She is still laughing and smiling more, seems more alert and her physical abilities are improving! She is rolling from back to belly then back to back again. This is something she has done off and on for the last year. Hopefully, this time she will keep doing...and then some!

Guess that's about it....keeping it short this time! Tabby still asks that you visit her brother, Bradley. He LOVES for people to visit his page and leave him messages. He gets kinda disapointed when nobody leaves him a note......thanks for coming by, as always!

Friday, June 3, 2005 2:41 PM CDT

Happy Friday!
Hope everyone has had a good week! Our week has been pretty good! Bradley is out of school now for the summer, so it's been nice having both the kids home. He is a great helper to have around too!

Tabitha is doing great! Wednesday was her last day of phenabarbitol. So far, so good! Hopefully that will just be a thing of the past. I think her spasms have increased slightly, which is normal when you reduce a med like that, so I am hopeful that within the next wweek that will be straightned out.

No appointments at Vandy 'till the 21st, which is when we see the genetic doc....(fingers crossed for a good appt!)

Really overall....things are great....I cannot complain one bit. I am almost scared to say it, but it really has been a blessful year for Tabby so far. I know anything can change within a second, and I am thankful for every second that we have at home....living a somewhat normal life!

Thank you to all of you that continue to check on Tabby so very often...I have made some great friends! Alot of you guys have talked me through when I felt like I was ready to lose it! For that, I am grateful as well as leaving such inspirational and cheerful words in Tabby's guestbook. I printed everything out the other day and was looking through it. I just wanted to cry reading all of your guestbook entries. I know that one day, Tabby will appreciate it too!

Thanks for checking in....now go sign in!!!

P.S. (from Tabby)
Could you guys click on my Bubba's link down below? My Mommy made him a web page too (so he wouldn't feel left out), but he hasn't had alot of visitors. If you guys would just leave him a little message, I know he would love it. He checks everyday. Thanks a bunch! And by the way, thanks for checking on me!

Love,

Tabby

Wednesday, May 25, 2005 9:00 AM CDT

Hello again!

If it seems like it's been awhile since I've updated it's because things have been going pretty good around here lately! Everyone has been doing fine. The worst to tell is that last weekend, Tabby carried a fever around for a couple of days, then it miracously dissappeared! So that was great! I guess it was due to teething, or maybe just a 48 hour virus. As long as it's gone that's all that matters!

One more week of phenabarbitol! We have seen many wonderful improvements in Tabby since we began the weaning process back in Febuary. People that don't see her as often as we do notice the changes even more. She is more alert, and VERY talkative! Her responses are faster, and just her overall appearance is good.

I have been blessed with such a wonderful husband and children. I never thought I deserved all the greatness God has given me. One thing my children have taught me is to never take anything for granted. Embrace each day and the joys that come with it. Even if it's just looking at the blue sky, or smelling a flower. So many cannot enjoy those things. I feel blessed that God has given me another whole day to do what I feel is my purpose in life, and that is take care of my family.

Ok, I know I got a little corny there, which is something I hardly ever do. I guess I've just been thinking about it extra hard here lately so I wanted to share my thoughts.

Thanks for checking in!

Saturday, May 14, 2005 2:01 PM CDT

Hi there! Tabitha is still hanging in there pretty well these days! The last few weeks have been very busy for her. We went to a center yesterday and got a switch toy for her...it's basically a toy with a big button that is really easy to push. There are alot of toys that are hard for her activate because of her limited skills. Switch toys are super easy for her, and will help her learn cause and effect alot easier. All of her therapies are going very well. We are still slowy introducing foods by mouth....only giving her a little at a time. I am still paranoid, and I think everyone else is too. But atleast if she gets a little, it's much better than nothing at all.
She got some immunizations this past week, and they made her feel really yucky. This was the first time that has ever happened. She usually does very well with them, but this time she ran a fever and was irritable.
Her seizures are different everyday. She has good days and bad days. A good day she will have 1-2...a bad day she will have 5-6. We are still going through the med switch, so there is still hope for improvement.
Thanks for coming by....we'll update again soon!

Tuesday, April 26, 2005 8:06 PM CDT

Have you ever got news that was so great that you just couldn't wait to tell everyone? Well, that's how I felt this afternoon after I talked to the genetics couselor from Vandy. Tabby's MRI that was done last week was actually better than the one from last year! Let me explain......last year, Tabby's MRI showed there were "microscopic cystic areas on the brain". Well, today I was told those areas have decreased in size!!! Just to let you know what a miracle this is...Tabby's nuerologist told us one time that these cysts would probably always be there and never change. This is so amazing!!! See, doctors don't know everything! (lol) She said everything else was the same as last year, which really is good news as well considering I really was afraid af things being worse. I was so happy when I got off the phone I couldn't do anything but cry! This was the best news I have heard in such a long time. Especially after the EEG she had last year, I just knew these cysts were something to worry about. THANK YOU, THANK YOU, THANK YOU GOD!!! Praying works you guys!

Thursday, Tabby is getting a piece of equipment that will help her work on her standing. WE got to get her bearing weight on those legs. Also, in a couple of weeks I have arranged for us to go to this place in Nashville that will evaluate Tabby and make a switch toy especially for her! I am very excited about this and hope Tabby will be to! If anyone has any stories they'd like to share about switch toys, I'd love to hear them!

Let's see.....oh yeah! I talked to her doctor on the phone yesterday and we are going to start trial feeds in Speech therapy. Little nervous about this...Tabby hasn't had anything by mouth since Febuary, so I am praying really, really hard that we can atleast give her "treats" and stuff by mouth every now and then and just give her main nutrition through the button.

Well, I think that's about it. thank you for letting me share everything...thanks for reading it. Thanks for checking on Tabby and keeping her in your prayers.

------------------------------------
TUESDAY
MAY 3, 2005

I probably have enough to update without combining entries, but I am just so dog-gone proud of that MRI!
Anyway, Tabby got her stander Thursday...she loves it! She doesn't complain or anything in it. I hope this helps her with weight-bearing.

Monday, we went to see the surgeon for a check up. He said Tabby looks better than he's ever seen! She weighed 25.5! Whoa! Then, later that afternoon, we went to ST and Tabby ate about 1/3 cup of chocolate pudding! This is the first real food she's had by mouth since Febuary! She did great! She hasn't forgot anything about eating! She ws loving it. We are going to keep slowly introducing her back to table foods and give her her main nutrition thru the button.

The genetic doctor called us also. Her 2nd lab for the plasma amino acidss came back with slighlty elevated numbers again. So...he is going to talk to another doctor in Atlanta that specializes in PAA, if he thinks she need further tests, then we may have to go to Atlanta to see this doctor. It may not be anything to worry about since her numbers weren't extremely high. Just slightly, Dr. Hammid said that may just be normal for her. We will just have to see what this doc in Atlanta says about this. We go to see Dr. Hammid the first of June, so we will definitely know more by then.

Today, we went to the neurologist. Really all we did was talk about her meds and her progress since we began meds switch. She is doing better. Those nasty seizures may always have a way of hanging around, but we are getting alot better control of them. Her alertness has picked up as well, and she is just really doing great right now. I am so proud of her. She is my hero!

Click on Bradley's little page down below....he is so excited that he has a web page too! Leave him a message and let him know you checked it out! He would appreciate so much!

Thank you all for coming by....I can never say how wonderful all of you are. Just simply taking time out of your own busy lives to check on Tabby means so very much too me. I hope she inspires you with her strength, and amazing determination!

Saturday, April 16, 2005 7:07 PM CDT

Things are much better in the West household! Tabby seems to be getting better.....she gave us a good scare last weekend. I have taken her to the doctor twice since then. She has bad allergies I guess. Really bad coughing and sneezing. she has been on sterroids since last Saturday. Today is supposed to be her last day on them, but I have extra if tommorrow, she should need them. We will go back to the doc on Tuesday, and have a "recheck". Otherwise, she seems fairly well. Seizure activity is decreasing and getting weaker...yaaaay!!!!

Thurday is the MRI.....I hope they can do it even though she has had this upper respitory stuff going on. If not, that's ok....we will just have to do it later. We are very anxious to see what this will tell us.

Now....on a lighter note, I would like to brag on my kids! (Sure you never read about that on any of these pages...lol) Tabby is getting very good at her rolling....it seems to be coming easier to her and she is doing it faster and faster! Her communication skills are getting great! Now, not only can her Dad & I understand her, but other people can too! That is wonderful!

My son, Bradley is doing great in school. He has got Student of the Month for 2 months in a row, and has had his picture in the local newspaper. You know, this really makes a Momma proud! He has been so strong and supportive of his sister and all of the extra attention she requires. I feel so lucky to have a son that is so understanding.

Thank you for checking in on us....I will update after the MRI.

Friday, April 8, 2005 7:37 PM CDT

Hi all-hope everyone is doing fine and having a good day! So glad spring is finally here! We have a bad case of cabin fever over here! Unfortunatley....we haven't been able to medicate this cabin fever due to the fact that Miss Tabby just can't seem to stay well these days. She had pnuemonia back in February, then again in March...well, Wednesday we had another x-ray and the pnuemonia is finally gone but she still had alot of coughing and congestion. She is still on antibiotics which is no fun, considering she is having diarehhea like nobody's business! If she isn't any better by Monday, I think the doctor wants to put her on sterriods. (great-another medicine!) But, if it helps her...it's worth it. Doc says she has what is called Reactive Airway Disease...which is another word for asthma. They just don't diagnose kids her age with asthma...according to him. So, maybe sterroids are the way to go-if they will help keep the inflammation down and keep her well.

Two more weeks she has the MRI....I am scared about this. I guess because it could tell us so much. Anytime there's sedation involved, I get nervous! Please pray for a good one!

Please pray for the Stephenson family. Thank you God...for bringing Dawson into our lives and letting him teach and touch us so.....we will mmiss him so much.
Pray for his great mother....she did such a great job, Dawson was her only child....I hope she will have more. She is so good at the Mom thing!

Thank you everyone for just stopping by....just knowing you are thinking of Tabby is so very special too me. Everyday I look at this beautiful little girl and and thank God so very much for blessing US enough to take care of her. Her & Bradley are the most precious things I have ever seen....and I ama so blessed to be their mother. I pray everyday for the wisdom to make the right choices for them and also be a good wife for my husband. He is so wonderful to us all....I am so lucky to have him. He is every woman's dream!!!

I will update soon....thank you for reading!

Monday, March 28, 2005 4:59 PM CST

Just wanted to give an update......

I'll just get to the point here, Tabby has pnuemonia again. Aspiration pnuemonia to be exact. Right now it is not known if it is from reflux or maybe aspirating saliva during her seizures. We are starting up some antibiotics and if there is no improvement within the next few days, the doctor wants to do PH Probe test. (this will tell us if the pnuemonia is due to reflux)

I have a feeling the aspiration is from her seizures. But, to ease our minds, we will probably go ahead and call to have a Upper GI done. Last time when Tabby's nessan was undone and she had re-herniated, the Upper GI was the test that told us. Of course I want to give her a few days of antibiotics before we go off to Vanderbilt.

I don't know...everything seems so blurry right now. I am so worried that something has gotten worse. I am so paranoid at times, and then at others...I feel like just letting God handle everything. What a roller-coaster of emotions! This is her 2nd run with pnuemonia in a month! That makes me think there is a culprit! But, I guess all we can do is wait & see if these antibiotics do the trick.

I will update soon....and also put some Easter pictures up!
Thank you for stopping by.

Friday, April 1,2005----

Just wanted to say that Tabby seems much better today. She sounds much better and acts more like herself. No doubt, she is not out of the woods yet, but she is getting there. Thank you all for praying for her.

I talked to the genetic counselor yesterday....she said one of the labs ran on Tabby last month had some high numbers. (Plasma Amino Acids) So we are having to re-do the test. I'm not sure what it means if your amino acids are high, I think it depends on exactly what numbers were high with the amino acids. (as if you were breaking it down) And,I am having no luck in my own research! But, we are not stressing this yet, we will see what the 2nd test says. It will be another month or so before we know the results. Tabby also has a MRI scheduled for April 21st. Praying good news come from this as well.

Thanks for checking in!

Tuesday, April 5, 2005

I recieved a phone call today. A friend of ours lost a special little boy yesterday. Dawson Stephenson was only 2 years old and earned his special wings yesterday at a hospital in Indiana. He & his mother lived close to me, (then moved away before Christmass) and we spoke at PT often. When Dawson got his "special chair", his mother allowed me & my family there to see since we would be getting the same chair for Tabby. I will never forget the smile on Dawson's face the first time he got to sit in his special chair. It was priceless. The smile on his mother's face was amazing too. I could see the look of optimisim and hope. Dawson was an amazing boy. He lived with cerebral palsy and it was pnuemonia that got the best of him. His mother told me his heart got weak and he just couldn't fight anymore. I ask for you all to pray for his family. He had a wonderful mother...whom I look up to very much. He didn't have a web page....his Mom isn't too crazy about computers. (lol) God bless you Dawson, you will be missed, and never forgotten.

Wednesday, March 16, 2005 12:05 AM CST

Tabby is asleep....good time for me to update a little.

We went to the Genetics doc yesterday. They took some blood for alot of tests, and we talked ALOT. I really liked him. He wants to do another MRI on Tabby. We have it scheduled for April 21st. The MRI she had ran last year showed that she had "microscopic cystic areas" on her brain. He wants to make sure they haven't grown and that these cystic areas are from the loss of oxygen at birth and maybe not something else. He said if her MRI has not changed since last year, then that would be good, but if it has gotten worse, then we need to find out why. We won't get any answers for another few months probably. The labs were being sent off somewhere else. As far as the MRI goes, I really don't know when we'll hear about it either, but I will surely be making phonecalls the following Monday!

Yes, we are nervous, but we are keeping our cool so far. I am trying not to worry or think too much about this atleast until it's closer to time for the MRI. I always get nervous when sedation is involved....who wouldn't, right?

By the way....I am seeing alot of improvements with Tabby's vision and alertness. Don't know if it's the med switch or what, but I am loving it! I am so proud and positive when it comes to her!

I will update as soon as I hear something or something new happens....thanks for checking on Princess Tabby!

Image hosted by PicsPlace.to

Mommy Says I�m An Angel.....

Mommy says I�m an angel,
Then why do I feel this way?
Angels aren�t supposed to hurt,
They�re supposed to laugh and play.

Angels have wings to fly,
But I can�t even walk,
Angels have arms to hold,
But mine hardly work at all.

Maybe it�s because my soul,
Is so bright for all to see.
No matter how it seems I feel,
You still give smiles to me.

I guess Mommy says I�m an angel,
Because for her it�s plain to see,
Without me in her life,
Many things she would�ve never seen.

To Tabitha
From Mommy�I love you

Wednesday, March 9,2005 8:15 p.m.

Hi there-thought I would update again since we went to the neurologist yesterday. The visit went okay I guess, they never go good. He decided to change her meds around, so we are weaning off the phenabarbitol. I am very nervous about this. She has been on this medicine her whole life. I am anxious to see if her personality changes any. Of course he started her on another seizure med, so she will still be on 2 different seizure meds. It will take about 2-3 months to get all this medicine stuff straightened out.
When I asked the neurologist about Tabby's throat problems, he seemed to believe that it is because of her low muscle tone. He said he has never had a child with problems like this due to their neurologic condition. Whatever the reason is, it's there. I guess all that matters is she is happier getting fed through her button, and her throat is actually sounding better than it was. (it makes a horrible gurgling noise) So who knows, maybe time will tell and it will get better. My thoughts are maybe feeding a little here and there and giving her main nutrition through the button. Right now, that sounds good too me! She is gaining weight wonderfully, she is starting to look like a little butterball which I love! (who cares if it kills my back!)
Well, I think that's about it for now...we are going to the genetics doctor Tuesday. Don't really know if anything will come out of this or not, but I want to talk to them anyway. So I will keep ya posted...thanks again for taking time to drop by and check on my little angel!

Image hosted by PicsPlace.to

Mommy Says I�m An Angel.....

Mommy says I�m an angel,
Then why do I feel this way?
Angels aren�t supposed to hurt,
They�re supposed to laugh and play.

Angels have wings to fly,
But I can�t even walk,
Angels have arms to hold,
But mine hardly work at all.

Maybe it�s because my soul,
Is so bright for all to see.
No matter how it seems I feel,
You still give smiles to me.

I guess Mommy says I�m an angel,
Because for her it�s plain to see,
Without me in her life,
Many things she would�ve never seen.

To Tabitha
From Mommy�I love you

Monday, February 21, 2005 7:36 PM CST

Hello----thought this would be a good time to update on Ms. Tabby. She is feeling better! Her pnuemonia has cleared up. Last week I took her to the doctor and he said he couldn't hear it in her lungs anymore, but she probably still had some in there. It takes a little while for those things to go away, but I think she is just about over it now. She has gained all the weight she had lost back now and still gaining! She weighted 21 lbs. and 11 oz. today at the surgeon's office. I am glad of that! What I am not happy about is the fact that it looks like Tabby is having some pretty bad esophogeal problems. "Esophogeal immobility" is what we have been told, and you can tell from the sounds of it, it is not a good thing. Basically, what we have been told is due to her neurological condition, her esophagus is kinda not working as well as it should be. This is why she is aspirating. We have been referred to a gastronueorogist (I'm sure I have spelled that wrong), for a deeper look at this situation. I am very worried about what this means for her, but I am trying to stay positive. She had a swallow study ran last Friday, and as long as she is sitting upright, and her food is thickened, she will not aspirate it. So we will feed her mostly through her button, and give her "fun stuff", and snacks by mouth. I hope this is only temporary, but from the sounds of the doctors, I get the impression that this will be her means of eating for awhile to come.

I can tell she is much more comfortable getting her food through the handy button. She has even given us a few smiles here and there. That is a wonderful thing to see!

The next couple of weeks are going to be busy ones....next Monday we have the opthamologist, the week after that, we have the nuerologist, and then after that....the genetics doctor. All are very crucial appointments and her father and I are nervous about all of them!

Keep praying for our girl--she needs them! I will update again soon. I always say---this is a wonderful therapy for me!

Wednesday, February 9, 2005 9:16 AM CST

Hi all-Just wanted to update real quick. I do have some news to tell....

First I'll start with the news that Tabby gets her "special chair" on Thursday. I am very anxious to see how well she will benefit from it. Her PT says most kids do more very well with them and she expects the same from Tabby. So, I will let you know how she does and also put some pictures of her in her new chair as soon as I can.

Okay, the bad news is that Tabby has pnuemonia again. I took her to the doctor yesterday and he sent us for some chest x-rays. He said it is mostly in her right lung. It is not bad enough to be hospitalized, he wants to treat it with antibiotics and also prescribed some cough/cold medicine. It is not viral but bacterial. I am very scared she could be aspirating. If she was to re-herniate, I think she could aspirate and/or reflux even though she has had the surgery to prevent her from refluxing. She has had 2 hernias in the past, so this is why I am especially worried about this. I am trying to get in touch with her surgeon just to tell them about this & get their opinion. Otherwise, I guess we will just wait & see if these antibiotics do the trick. If she is aspirating, I know from past experience....the antibiotics will not work! So keep your fingers crossed that this is only an infection and there is nothing under-lying going on to cause this.

She had also lost some weight yesterday when I took her to the doctor. I hope this is because she is sick. The funny thing is, her appetite has increased. (?) See why I am worried? I will be keeping an eye in this, and the doctor said he would be too!

Also, say a special prayer for Sadie Grace(a friend), she will be having surgery this month. Hope all goes well with that!

***Update***
Feb. 12,2005

Well, I got a little impatient. Seeing no improvement in Tabitha's cough, or breathing, I called one of her specialist...the surgeon. It seems like he always reacts faster than her regular pediatrician does! Anyway, I talked to them about my feeling of aspiration pnuemonia. He told us to come in yesterday for a esophagram. This is very close to a swallow study/upper GI, just looking at the esophagus. We learnt that Tabby is indeed aspirating her food. The doctor told us it wasn't from reflux though. He said she has a serious esophagus problem. There's a couple of reasons this could be happening, and I'm not going to get into all of them right now, because I would be typing for a long time....but probably what is going to happen is he will end up going in her esophagus with a scope and dialating her stomach where the nessan is. I hope this will fix this problem. Needless to say, we are strictly bolus feeding now with nothing going through her mouth. She already sounds better today. This could explain her weight loss too.

Right now, I guess the thing to do is hope and pray that this is all something that can be fixed. The alternative doesn't sound good too me, but whatever has to be done to keep her healthy is what we have to do. I'm just a little confused right now. The radiologist that did the test, said she wass refluxing, and the surgeon said she wasn't. I am hoping that the swallow study will tell us more and I am also going to take her to her regular ped. next week and get his insight on this whole situation. Please God-let this all be fixable!
I'll talk to you soon-thanks for checking in-& sign the guestbook! We all need a little encouragement these days!

***UPDATE***
Feb. 16,2005

Another little update to add.....I took Tabby to the doctor this morning. He gave me good news! Tabby's pnuemonia is clearing up (not gone yet), and she has gained all the weight back that she had lost! YES! I was so glad to hear that! I have really kicked her feeds up through her button, and she has tolerated them very well. She even seems happier too. She gave me a grin yesterday, then this morning she actually SMILED at me! YES!!! My babygirl smiled at me! Do you have any idea how long it has been since she has smiled at me???? I often wondered if I would even see a smile again! Pray there's more to come!

We are getting ready to go get her special chair-hope this helps too!

We have a swallow study Friday-really praying that will be okay. I am optimistic!

I will update again soon-and if you have read all of this-----THANK YOU for being so concerned and checking on this angel!

Wednesday, February 2, 2005 11:28 AM CST

Hi everyone...thought it would be a good time for me to give an update. Things are okay, I guess. (?) I am having this feeling again...you know that Mommy feeling when something is wrong? Maybe I'm just paranoid, well, let's face it, of course I am!
It looks like Tabby is trying to have bigger seizures...she only does that when something is wrong with her body somewhere. She has had a cold for a couple of weeks, and maybe that is what has her threshold lowered. Who knows? These seizures are tricky and mean! I am going to watch her for a few days, of course if she does have a "big" seizure, I will take her to the doctor, even though there's nothing they can do. Check her levels, and that's about it. As a mother that knows her daughter, I wish I could just order a full body scan whenever she has a big seizure! (joke) Because like I said, that always seems to be a sign that something is wrong..somewhere. So, I am going to try to think positve.
Besides that, everything else is fine. She is growing well, and still determined. Just a little fussy in the evenings, so there again, I get paranoid. Of course, she could be teething....you just never know!
So, that's all I'm going to update for now. We go back to the surgeon in about 3 weeks, and in 4 weeks..we have the dreaded opthamologist appointment. There has been alot of questioning about Tabby's eyesight. So, we are really hoping to get some answers with this visit.
I will let you know.....
Thanks for checking in!

***UPDATE***
Just got off the phone with the Speech Therapist-we have an evaluation scheduled for Feb. 11th--we are pretty sure Tabby will need this service, but I am still anxious to hear the ST point of view on feeding & specch issues--I will let you know!

Tuesday, January 18, 2005 9:05 AM CST

Hello! Thought I'd make this short and sweet since there's really not alot to update on. Tabitha is doing fine. She has had no more than a runny nose this winter so far, so keep your fingers crossed! All of her doctor's appointments have went well. The only real concern is if she's eating like she should be. She's not really gaining any weight, and it's hard to tell if she's losing any. (it seems every scale is different at every doctor's office!) But I think if she was losing anything dramatically, it would be obvious. So, we are just going to keep her mickey button for awhile longer.

Still awaiting a speech therapy evaluation. (?????) Guess there's a high demand. (????) Maybe soon.

Wish I had more to say, but it's a good thing that I don't! Thanks for checking in! Still waiting for that smile!

***I will take a minute to brag on my son, Bradley. I am so proud of this kid! He's made the Honor Roll AGAIN! So, he got another Ceritificate of Academic Excellence. So proud of him! (he takes after his Momma!)***

Saturday----January 22,2005
Guess what? I have some great news!
Tabby is sitting! Unbelievable, huh? Yesterday her instructor was here, and we were working on her sitting, and she help herself up for like 2 seconds. Then today, I was working tih her some more, and she held herself even longer!!! I just cry everytime I see her doing it! I am so proud of her! You should see how she's been moving around the last week! She is really trying to do alot! I'll keep ya posted on anything new happening!

Tuesday, January 4, 2005 6:58 PM CST

Okay people....time for another therapy session from yours truly!
Yesterday was Tabby's 1 year check-up. Needless to say, it wasn't your average check-up...they never are. The doctor said he believes Tabby has some sort of genetic disorder. Okay...so what kind of genetic disorder???? He said we never know, there's just too many of them out there. And I can understand that, I have researched myself, anf there's a million out there with very similar symptoms. The thing is, I just can't accept that and go on with our lives. What if there's something we could be doing to help her? To treat her? To make her stronger??? I mean, let's face it, she's 1 year old and barely has head control. What if there's some medicine or something that could make her stronger? I know, probably not, just wishful thinking but I asked him for a referral to a genetics doctor and he agreed. I don't want to put her through ANYTHING that may be unessecary, but if there is one, teenie, tiny thing we could be doing, that we're not....then how will we ever know if we don't know what we're dealing with? The truth is, Tabby may never walk, or talk, but I will never give up on her. NEVER!!! As a matter of fact, she talks to me all the time...just nobody understands her except me and her father. Plus, she talks alot with her eyes. Hey...it's communication and it's fine with me!
Ok, so today we went to the cardiologist. He on the other hand had wonderful news! He said he could barely even hear her VSD, and he doesn't think her heart will ever give her any problems! It's good to get some good news somewhere! He doesn't see any need to see her in less that a year's time unless we feel the need. So that's great...one specialist slowly fading away! I can get used to that!
So Ms. Tabby is weighing in at a good 20-21 pounds now, and about 31 1/2 inches long. Yes, she looks healthy as a horse! Her determination is back and that's what she needs to get stronger.
All I can say is please keep praying for a certain diagnosis. Her neurologost says Cerebral Palsy, her Gen. Ped. says genetic disorder. Who to believe? Who knows? The fact is, nobody knows right now. So pray for answers soon, so maybe we can start a proper treatment. (if there is one)
I have posted some birthday pictures....they are quit adorable if I must say so. She had a great birthday, got lot's of Cabbage Patch Kids, and clothes! She is one styling little girl!
Thank you for checking in on her...if you would sign the guestbook, Micheal and I would love to know you were here!
I'll be updating again soon....we have a surgeon appt. in about a week and a half. I'll let you know how it goes!
God Bless each and every one of you! Have the best year ever!

Tuesday, December 28, 2004 10:15 PM CST

Well, my babygirl is 1 year old now! Wow-what a year it has been! I look at her and can't believe how she has grown, or better yet, all the things she has overcome this past year. My girl, is by far....simply amazing.
She is doing very well. Right now, I am waiting for a Speech Therapy evaluation. Next Monday she will go and have her 1 year check-up, and then Tuesday, she will go to her cardiologist. As always, I will have a million questions to ask. (haha )
She is eating everything by mouth now, and loving mashed potatoes, ice cream, and even some cranberry sauce over Christmas dinner! She is still very sleepy all the time, I guess because of all her meds.
I am so thankful to have had her home for Christmas this year. I guess after spending Thanksgiving in the hospital, I am so glad it wasn't Christmas. It felt great to see family, but especially, my husband and kids. We are so lucky.
The only thing I ask for is continous prayers. Pray for more progress. Tabby wants to do so much. You can see it in her eyes. She really wants to move, and I think she knows she should be. She is still not laughing, or really smiling much, but you can see in her eyes that she wants to. I asm hoping Speech therapy will help with that some.
Well, I guess that's really all for now. Keep you fingers crossed next week that her check up goes well, and the cardiologist has good news. (I am hoping her VSD has shrunk)
Talk to you all soon. Thanks for checking in. And please, sign the guestbook, it means alot to us to know you were here. I promise, we read every single entry.

*I'll have new pictures on soon!*

Something to think about:
"The only thing we have to fear, is fear itself"
Franklin D. Roosevelt-whose legs were paralyzed by polio at age 39

Tuesday, December 14, 2004 6:09 PM CST

Hello, hello!
I don't have much news to write this time, and as you know, that is a good thing! Tabitha is doing very well! She is eating everything by mouth, and just today, slowly starting back to solid foods. We were getting ready to start her on Pediasure (Big Girl Formula), but we are trying to find which formula will be best for her. The one Dr. Lovvorn had her start yesterday gave her diarehea, so we are trying to figure out what she will be able to take.
She seems happier still, not smiling but giggling. We are waiting to have a Speech Therapy evaluation set, more than likely this will be a new therapy for her in the future. She is doing well in all her other activities, she is just very tired all of the time. This kind of concerns me, but I know it could be her meds. Maybe her absorbtion is getting better since her surgery. (???) I don't know, but I am keeping an eye on that.
We have her 1 year check up on January 3rd. She'll get some shots, and I'll talk to the doctor about her sleepiness if that is still going on by then.
Otherwise, I will talk to you all if any new developments come about.

Oh yeah, you must go visit -sadiegrace/tn. Tabby had her 1st playdate with her last Friday! It made my day to meet her and her mother. Go see her and tell her I sent ya!
(P.S. I'll have pictures from their playdate real soon!)

*One more thing---I must say thank you to EVERYONE who has prayed, sent gifts, cards, and phone calls to Tabby. I can never show the amount of grattitude I have for all of you, it means more than words could ever say. Thank you just doesn't seem strong enough for the way I feel.*

Monday, December 6, 2004 6:46 PM CST

HAPPY BIRTHDAY TABBY!!!

Hello! Thought I would write to let you all know that Tabitha is doing pretty well at home! Her fussiness has ceased tremendously! She seems alot happier. She does get her fussy times, mostly in the afternoons. She is still having alot of gassiness & constipation. I hope we can get that under control very soon!

She went to Physical Therapy today for the first time in over a month. She did very well! We talked about ordering a special chair and stander for her. These things will help her put weight on her legs, and keep her body midline and straight when she is sitting. It will take a few months to get these things. The chair has to be "fitted" for her, and they have to ordered by the doctor, etc. Micheal & I are not too fond off the idea, but if they will help her, we will do it. Who wants to see their kid in "special equipment"? It's hard to except, but we have to make life easier for her. That's what we both feel we are here to do.

Besides that, everything is great! Life seems less stressful since her surgery. I feel like a huge weight has been lifted off my back! We go Monday to have a follow-up appt. with the surgeon. Then we talk about changing to a "big girl" formula, and when Tabby can have solid foods again. I will bring up the digestive problems while we're there. I'll be writing all new developments so you will all know what's going on! Thank you for checking on Tabby!

P.S. Thank you Kathy & Kaitilynn Preston for the sweetest birthday gift! It brought tears to my eyes to know you are thinking about her! You are so very, very sweet! Thank you-thank you-thank you!!!

Sunday, November 28, 2004 10:02 AM CST

Before I even begin to update, I just want to say that I am completley humbled by the thoughts and prayers that have been sent to my little girl. I have always known she was special, but to see her becoming special to other people, too, some complete strangers, only proves too me how strong her little soul and heart really is! Thank you all so very much, for calling, visiting her web site, the cards.....everything! It means more to us than any words could ever say.

Now, for the wonderful news....Tabitha is at home! This hospital stay was nothing short of a miracle! It really couldn't have went any better! She is recovering so wonderfully! We are still waiting for that smile....I know it's coming. She seems to be feeling so much better than before. The surgeon said that he could see the hernia pulling up into her stomach everytime she took a breath! No wonder she screamed and cried all the time. (plus, that probably only made it worse!) She is by far, the strongest person I have ever known.
We are going to be extra. extra careful with her and take our time in getting her back to where she was before.
Next week, we go to see the neurologist to talk about the EEG from a couple of weeks ago. (blah!) Maybe now that she's had her surgery, her seizures will slow down! That would be another miracle!
Keep praying for this special girl! Our fight is far from over!

December 1,2004
We went to the neurologist yesterday, he really didn't tell us anything that we didn't already know. He pretty much just confirmed everything we heard over the phone and at the hospital with the EEG. He really didn't have anything positve to say, which kinda put MIcheal & I down in the dumps, but by last night, we were feeling better. We know that Tabitha has enough determination and inner-strength to do more than anyone could ever predict! I just really believe that! This morning I had her down in the floor sitting her up and she did not want to lay back down! I almost could have let her go, she was supporting herself so well! She also had a little grin on her face! It wasn't a full-fledged smile, but a grin is close enough!
Thanks for checking in on Tabby!

MERRY CHRISTMAS!

Wednesday, November 24, 2004 10:07 AM CST

Greetings from Vanderbilt! We are here and have a computer in the room, so I thought I would update real quick!

Tabitha did absolutley wonderful during her surgery yesterday! We are so proud of her! Dr.Lovvorn was able to do everything laproscoptic-and there wasn't alot of bleeding! Those were the 2 things we were scared of the most! She didn't even need any extra oxygen when we finally got to see her after surgery yesterday. This morning, she has woken up and is a little uncomfortable, and very, very congested sounding. She is getting resp. therapy every 4 hours. They will be doing a chest x-ray shortly just to make sure this congestion is from surgery, and she's not coming down with something. Apparently, resp. problems are fairly common in children just after surgery. So, hopefully, it's nothing.

Well, I guess that's it! Things could not have went any better at all for her yesterday! We are so thnakful to God for this huge miracle! Thank you to everyone who has Tabby in their prayers. So many people have asked about her, and even came up to the hospital yesterday to offer their support. It means so much to us.

I will definitley come back with any updates!
Thanks!

Wednesday, November 10, 2004 6:49 PM CST

You know...the good thing about this web page, is not only can I update about Tabby, but it serves as sort of a therapy for me. A way to relieve stress! And boy, do I have some stress goin' on!
Where do I start??? This past weekend...the video EEG went horrible. Tabitha has severe brain damage, and infantile spasms due to loss of oxygen. We know this happened at birth. Stupid doctor! Prognosis is too hard to determine at this point. "It all depends on Tabitha", as her neurologist put it. We have an appointment with him on Nov. 30th, and he said we could talk more about it then. He still has not even received the report. We are trying yet another medicine to help control all the seizures she is having. And apparently there are more than we can even see. The neurologist proceeded to tell us that all the circumstances are right for cerebral palsy and maybe even mental retardation. I must say, this is much easier to write than to speak about.
Okay, the upper GI. Her surgery from last spring as somehow, someway, came un-done. How could this have happened? I wish I knew. We also seen another hernia. This one to be 4cm long and 2cm wide to be exact. Needless to say, Tabitha will have another surgery to repair this. As of now, we are waiting to talk to her surgeon to get this scheduled. This explains so much too me. The increased seizures, the hours of screaming, the discomfort in her eyes. I would do ANYTHING to understand or know why this is happening to my daughter.
As you can proabably imagine, Micheal and I are having a rough time right now. Thank God we have each other and a wonderful family that supports us. Even Tabitha's therapists have been extremely comforting during this time that seem so hard to come to terms with. I still want to believe this is all a dream. I still want to believe that Tabby can overcome all these developmental delays. But as we were told this weekend, she will more than likely always be delayed. But you know what? A wonderful nurse talked to me this weekend. I will never forget her. She talked to me about having dreams and realizing that the dreams you have may never come true. But the dreams you can have are just as beautiful.
Then there's the story my Dad told me. He asked me, "What's the most important thing you can have in your life?" Most people would say, "your health". But one man said, "your soul". We know Tabby has a wonderful, vibrant, loving soul. Something that alot of people cannot even fanthom.
I could sit here and type all night long about how unfair life is, but instead I think we should all choose to think about how wonderful and great our life is. "No matter how bad things seem, they could always be worse", my husband always says.

***Just a quick update--Tabitha will be having surgery Nov. 23rd. Pray for her! We are a little nervous because the surgeon says this is a complicated surgery. With the scar tissue from her past surgery, there could be a risk of bleeding. AND...if there is too much scar tissue...he will have to do open surgery instead of laproscopic like last time, so please pray that everything goes okay! Thank you!***

I Cried Out to God
by Susan Marie

I cried out to God,
Show me your face and God sent me a ...child.

I learned about Surrender
as I gave way to the surges of birthing energy.

I learned Compassion
as my little one's cry pierced my heart.

I learned about Powerlessness
as I laid awake with my inconsolable infant.

I learned about Faithfulness
rocking my feverish baby day and night waiting for healing.

I learned Patience
as my child asked me to do it again one more time.

I leanred a Fierceness in love
that could take me to death to defend my sweet child.

I learned Tolerance
accepting myself enough to love my child in a fit of tantrum.

I learned Kindness
as my tears were kissed away with tiny lips.

I learned Respect
as I wondered at the profound wisdom of one so small.

I learned Humility
seeing the Divine in the eyes of my child

God answered my cry
Know who I Am
As you love your child--so is it that I love you.

Tuesday, November 2, 2004 8:13 PM CST

Hello....I found some time to write, so I thought I'd take advantage of it to update about Tabitha.
Not much has changed with her in the last few weeks. She is still very moody, and she is still doing her "funny faces" lasting from 5 to 10 minutes. She has been very vocal, but not the way you want your baby to be. It's like she's complaining about something. We called her surgeon today, because we have had some concerns about her behavior maybe being related to something digestive..and since she had a stomach surgery, we just wanted another opinion because we are so desperate for some kind of answers. They prescribed another medicine for her to help her digestive tract and they might go ahead and order a upper GI while she's in the hospital this weekend so we can make sure everything is okay "inside". I have commented several times that I feel whatever is bothering her is either neurologic, or digestive. Just not sure which, and her pediatrician doesn't seem to know either, so maybe this way we will get some answers this weekend having both areas looked at.
I must say, I am dreading this trip. (who wouldn't, right) It seems everytime we've went to the hospital, the trip is prolonged and we learn something worse than what we already knew. I am trying to be positive....really, I am. It's just very hard when you know, you just have that feeling, that something isn't right somewhere.
Therapy is going well, she has seemed to be stronger since the latest seizure med change. She actually has head control now, and she puts weight on her arms! That makes us very optimistic! She is such a strong little girl! Can't seem to get her to stop biting her hand though. (???) Beats me, why she does it, but she is learning what "NO" means. Sometimes, I just have to keep a sock over it so she won't bite herself.
We went to the doctor today for her 2nd RSV vaccine...and she was a good 19lbs. and 4 oz.! She has gained a pound in the last month, so that part is good!
Keep praying for her...especially this weekend, hopefully we'll get some answers, and if not, I pray that that means there is nothing more to know and the way she has been acting is just the way she is. (But, I just don't feel that to be the case)
Thanks for checking up!

***********************************************************
Here is a little list of prayers needed:

The family of Connor Hunley

Little Kirsten

Little Dawson

Little Sadie Grace

Lora & Ellis Harrell

The family of Christopher Parker (my cousin, click the link below to see his beautiful memorial quilt!)

***********************************************************

Tuesday, October 19, 2004 11:55 AM CDT

Tabby is napping, so it looks like a good time to update! Things have not changed much around here lately. I thought Tabby seemed to be in a better mood, but I've learned that everyday is a new day-and a new mood! She has been very moody needless to say and very unconsolable. We have also had some questions about maybe her having seizures when she first wakes up from her naps, because she has these little spaced out periods, and then gets very mad. I believe she could possibly having seizures, just without the jerking movements.
So..........I called her nuerologist, and he wants to change her medicine...again. He also wants to do a video EEG. He explained that this is more detailed than a regular EEG, and she would be hooked up for a couple of days, so her brain activity could be monitored continously. He wants to do this in about a month. It hasn't been scheduled yet, but she will be admitted at Vanderbilt for a few days. We are nervous, but at the same time, I myself, feel sord-of relieved that we can see what is going on with her. She really hasn't been herself since she had those big seizures in September. She doesn't smile or laugh as much, and her progress & determination in physical & occupational therapy have decreased. She doesn't seem to be losing any skills, just not gaining as well as she should be. (I talked to her PT about this yesterday.)
Anyhow, maybe this medicine switch will do the trick, and we won't have to go to the hospital again. If not, it's best that we do so the nuero can have a good look.
Keep your fingers crossed & your prayers loud!
------------------------------------

October 22,2004
Just a fast update--Tabby had a very big seizure yesterday, needless to say it scared us silly-we called a few doctors, and they just advised us to keep close eyes on her. She will be admitted Nov. 5th at Vandy for 3 days. This will be to do the video EEG. I will update when we get home, since things seem so crazy around here right now---------------------------

*Oh yeah, check out the beautiful quilts of link link below, this is so cool!*

Wednesday, October 6, 2004 6:26 PM CDT

Hello.........just wanted to write & give a quick update. I am so proud to say that Tabitha is acting like she feels better. With so many things going on with her lately, I don't know for sure what exactly is making her feel better, but I can tell she does! Last Saturday was her last day with Keppra (one of the anti-convulsant meds), it will remain in her system for a good week, but she is already acting different. She has also had a very bad cold, which concerns me greatly with her high risk of RSV, flu, and any other sickness that may float around. She is fighting it well though. We went to the hospital last Thursay to do a RSV test to be on the safe side, it was negative, and I pray it will stay that way! Yesterday she had her first vaccine to prevent RSV, so maybe we'll be in the clear this season! Next week, she'll go get her 9 month check up. She turned 9 months last week, but this visit we are going to see a new doctor I have heard many great things about. I have heard he deals with alot of "special" kids, and seems to have a special interest in them. I thought I would try him out and see what we think. By the way, she weighed 18 lbs. and 12 oz. yesterday! Man, what a girl!

Her physical therapist has given her many good compliments this week, saying she is stronger, and more "together". She has improved alot on her strength, but I guess since I see her everyday, I don't notice as well as others. Sometimes I wonder if I'm just imagining things. I want so much to see her stronger. I see her determintaion and it strengthens me. Whenever I feel like giving up, I just look at her and realize there's no way I can do that. If she's that determined, who am I to give up? After all, she is a 9 month old baby, and I am a grown woman! (thought I was going to give my age, didn't you?) I will admit, I've had alot of bad days lately, I guess it's all starting to sink in, and I sometimes wonder how to raise this special little angel. But I guess it will all come to me just like it has so far. I love my family more than anything, but my children......they keep me going!

That reminds me, I have to brag that Bradley got Honor Roll this 6 weeks! He always surprises me! I really didn't expect it this time, his grades have dropped slightly, but he pulled it off! He has gotten Honor Roll or Principal's List every 6 weeks since 1st grade! He is such a great kid! I am so proud of both my kids!

Thanks for checking in, keep checking back for more updates!

*Keep praying for Carter Wells, he undergoes heart surgery in 8-9 months. Also pray for my dear Granny who I love so much, who is battling Alzeimer's Disease. Pray for my Papa who is taking care of her. Pray for my Aunt Sherrie who just lost a son. We miss you Christopher, and I feel your presence checking on us daily.
If we could all take some time out of our day to pray for all of those in special need, what a difference we could make!*

Click the quilts of love link below to see this beautiful quilt made for Tabby! It is so cute!!!

Monday, September 27, 2004 1:37 PM CDT

Hello, just wanted to write that Tabby is doing better. (I think) No big seizures since last Monday, & we all are praying this doesn't change. She is still very moody,and wanting alot of attention, which she is definitley getting! (ha ha) I don't know if her new medicine is bringing this on, or if she just doesn't feel right yet. She is also getting off the keppra. Five more days, and she will be totally off.
She will be starting her RSV vaccines next week. Her doctor's office also wants her to have the flu vaccine (not too sure when that will be). So, they will call me when the RSV vaccine is in and she will also have her 9 month well-visit. I am considering making that appointment with a different doctor in the office. Only because I have gotten a little frustrated with Dr. Spencer. He's just so non-chalant about everything. I on the other hand, am quite the opposite. The more I see other healthy babies, the more I realize how far behind my sweet Tabby is. Maybe there's nothing else to be done, I guess I just need the satisfaction of knowing that for sure.
I must share a very wise quote I heard today.....someone was talking about the definition of perfect. He said, "It depends on what perfect means to you. There are many different interpretations of what perfect is. To someone it might mean, without flaw, to someone else, it could mean being the best at what you are meant to be." I liked that. I think perfect too me will mean being the best at what you are meant to be!

I also want to take a minute to ask for prayers for two other special angels. My grandmother who is battling with Alzeihmer's disease. She is one of the strongest women I've ever known, and also one of the biggest hearted.
---------------------------------------October 5,2004
I have something to share! I am so excited because Tabitha is starting to act like herself again! She is laughing and smiling! I haven't seen her this happy in weeks! I am just so happy I had to write this down!
Today she goes to get her RSV vaccine. I hope it's as goes as these doctors' think it is! She's had a bad cold the last couple of days, and we've already had to test her for RSV just to be on the safe side. I'm optimistic, I know we'll have a good season.
---------------------------------------

Also pray for Carter Wells, he's my 2nd cousin and will be having heart surgery in 9 months to repair a open valve.
There are so many who need our prayers, I could write all day....for all those special children, and adults who need our prayers-this is for you!

Wednesday, September 22, 2004 8:55 AM CDT

Hello, time for a quick update on Tabby! She is doing well. Her last seizure was Monday night. It looked pretty big, she cried for about 15 minutes then slept until about 12 midnight. I talked to Dr. Frye (neurologist) yesterday and he wants to up the dosage of her new medicine. I pray this will work. He basically told me that unfortunatley, she has hard to control seizures and we need to learn to deal with it. I know that may sound harsh, but I think he's just telling us like it is, and that's what we want.
Please continue to pray for Tabbby and all of our family. I think it's beginning to take it's toll on us all. Praying is our only hope I feel at this point. It seems that medically, everything is being done that possibly can. A wise person told me to just keep the happiness alive. That matters most, so we are doing that. That is one thing I can do! Even with everything that has happened in the last year, I feel so truly blessed to have such a wonderful husband and wonderful children. They are the light of my life.
Keep praying.....I'll update soon!

Saturday, September 18, 2004 2:20 PM CDT

Hello to all....I have been reluctant to update only because I do not have any good news. Tabitha has been having seizures again. She has had atleast 3 big ones. We have taken her to her regular doctor and also spoke to her nuerologist over the phone. We explained to him that Tabby makes these strange faces when waking up from naps. The big seizures she's had have had the same faces, only she holds the face for awhile. He explained that she has been probably trying to go into a big seizure for awhile. They call it partial seizures, or auro, which means the beginning of a seizure. There are 3 stages of a seizure, and apparently, she has been having the first stage, the auro, for awhile now. I hope that makes sense. Anyway, he started her on a new medicine, which I pray will work. This morning she had an even bigger seizure, and if she has another one, we will go to the hospital. She has been asleep most all day long.
I have a terrible feeling.......everyone says to think positive, but I truly feel something is going on. She's been on this new medicine for 5 days, and I'm not seeing much improvement. I hope it just needs more time.
Besides the seizures, she is doing just fine. She is still a happy little girl, and working very hard to do all the things she wants to do! I really think she knows she should be doing more. She gets so mad when she can't do something! I've said a hundred times, but she is the most determined person I have ever met! (and if you've ever met my family, you know that's pretty bad!)
I'll update soon, thanks for checking up on Tabby!

Tuesday, September 7, 2004 3:13 PM CDT

Hello, I hope everyone is doing well. Tabitha is doing great! She is getting stronger everyday! She is using her shoulder and arm muscles more, and that makes me so very happy! Her head control is getting very good too! She can now roll from her back to stomach and back over to her back! These are all wonderful accomplishments for her! Micheal & I are so very proud of her!
We went to have the Occupationel Therapy evaluation last week, and she will be getting that twice a week as well as the PT, and Intervention that she already gets on a weekly basis. I know it sounds like alot, but it is really paying off. Her improvements are slow, but are still coming, and that is all that matters!
It is so cute to see the way she lights up when Bradley gets around her, last night she was kicking him, and he was going, "ouch! Ouch!", she thought that was hilarious! She just kept on kicking him and laughing about it! Little things like that make us all so proud and happy for her. The fact that she actually realizes what she is doing to Bradley, may not seem like much, but for her, it is such a major deal!
Keep praying!
Thanks for checking up once again!

P.S. I've tried to put a link on this page, but can't seem to get it right! Check out wellstrio for updates on Natasha's triplets!!!

Monday, August 23, 2004 10:03 AM CDT

Hello! I don't really have alot to update on this time, but I wanted to let everyone know that Tabby is doing just wonderful! Her Physical Therapy is really wearing her out, but we see such progress with her head control, and stomach muscles! She is really doing well, the Phy. Therapist is also very proud of her! She will be starting Occupational Therapy next week. This is to motivate her senses which is supposed to stimulate her muscles. (I think) And also work on her fine motor skills. Anyway, whatever they think will do some good is just fine with me! It won't be long, and she'll be showing everybody what she's been holding back for so long it seems! This little girl is SO determined.
Also next week, she goes to the eye doctor and has another neurology appointment, so I'll update again after that. Thanks for checking on this little angel!
P.S. We went to Chattanooga last weekend and she had a blast! She was so happy the entire time, me I Micheal were both surprised on how well she took to a different environment!

Friday, August 6, 2004 11:59 AM CDT

Hello! Just wanted to let everyone know that Tabby went to the neurologist on Tuesday and he gave us some good news! First he said that he would like to get Tabby of the phenabarbitol in about 3-6 months! YaaaaaaY!!!! He also said that he didn't think Tabby has any kind of syndrome or underlying reason for her problems. That is a very assuring thing to hear. Of course, in a week or two her regular doctor will probably say she still thinks there is. (an underlying reason) But that's okay, we have gotten to the point of just taking things one day at a time.
She is now taking physical therapy twice a week for one hour each visit. She will also be having a occupational therapy evaluation in the near future because the phy. therapist thinks she might benefit from that as well. She still gets the home visit every week too from the Intervention program. Whew! I can't keep up with all this stuff! But I really believe Tabby will benefit from all the hard work she is putting in. I can already see progress everyday. She is getting stronger, and as always, determined as ever! (I don't know where she gets that from!)
I thank God everyday for my children, but especially Tabitha. She has taught me so much in her short life. One thing is that I've taken way too much for granted in my life. The simple things like walking and sitting or even holding my head. The things we never think about untill we meet someone who can't do them. Don't get me wrong, I know she will. It just takes time. But I truly believe with all my heart that she is an angel, and truly more special than I could ever tell any of you reading this.
I also want to take a minute to thank each and everyone of you who do read this, and who pray for and think of Tabitha everyday. It means more than I could ever express. I hope she has touched others as much as she has us. As always, I'll keep ya posted!

Wednesday, July 28, 2004 2:38 PM CDT

Hello again!
Just wanted to update again. Little Tabby is doing wonderful! Man, that girl is getting so big! She's got 3 teeth now, and working on 3 more! Of course, this makes her a little fussy at times, but that's okay! Last doctor visit was 16lbs. and 7oz. So, she's growing really well!

Another good thing to report is that she hasn't had any seizures in almost 8 weeks! Is that a miracle or what? We are so astonished! We do have a neurology appt. next week anyhow, to check up on her meds and hear any suggestions he may have.

She will also be attending Physical Therapy twice a week now for one hour. I met the therapist yesterday and she is very kind and experienced. I think I'm going to like her very much.

Also yesterday we got her lab results back for the test they did to check Tabby's Chromosome 22. Everything was negative! (I type that as I wipe my forehead) Her docotr still seems to think there is something going on, or atleast causing all these problems (grrrr), she just doesn't know what it could be. (?) I say, she's crazy. Sometimes, I think she just had a slow start, and that's what the problem was! Anyhow, God will let us know when we're supposed to know, right?

Tuesday, July 20, 2004 9:11 AM CDT

Hello, I thought I would update everyone on the latest information we have received.
Last Friday, I met with the Intervention people to have a meeting about Tabby, and we've decided that she will be receiving exercise therapy once a week for one hour. This should help her muscle tone so maybe she can "catch up". I will also be taking her to Sumner Regional to see a Physical Therapist for an evaluation to see if she would benefit from physical therapy as well. It sure couldn't hurt!
Yesterday we went to the Surgeon's office and the mickey-button is gone! She will have to keep it patched up for a few weeks untill it heals, but we're so glad to have that thing gone! It feels so good to rub her little belly without touching that 'ole thing!
This morning we went to her regular doctor for a lab test. This test is to check to see if Tabby has any problems with her Chromosome 22. The docotr suspects this could maybe be the main source of Tabitha's problems and defects she was born with. We would love to have some answers. Part of me says she is fine, just a little behind, and another part tells me something could be wrong. That part will not let me stop untill we find out what it could be! We should have some results in about a week or so. I will keep everyone updated!
Thanks for checking on our angel!

Wednesday, July 7, 2004 12:35 AM CDT

Hello! I have some new news about our little Tabby!
First I'll start with her evaluation performed by the intervention team that will be working with her. Her total score was 484 out of 500. This is much better than anticipated! They scored her on 5 different skills, Cognitive, Communication, Social Emotional, Physical Development, and Adaptivve Behavior. She scored 100 on everything except Physical Dev. and Adaptive behavior. Physical Dev. was 89 (out of 100), Adaptive behavior was 95. This makes her 40% delayed physically, and 20% delayed as far as adaptive behavior. They will be working with her to try to get her up to speed. I actually think she has improved more since the evaluation was done, although she still has "flaccid" muscle tone. (some doctors use the term, "hypotonia") Which just means poor muscle control or tone. She is still unable to hold her head, and still unable to actually grab at objects. But she does try from time to time. It's just not a regular skill for her. Keep praying!

We went to the cardiologist yesterday, and 1 of her vsd's (hole in her heart) has completely healed up! It's gone!!! This is great! She does still have one teeny, tiny hole, that seems to be healing as well. He also mentioned again how "odd-shaped" her heart is. He used the term "non-compactable" which has something to do with the muscle at the bottom of the heart not compacting as it should. But, he said it's doing a wonderful job of working, and that's all that matters. He said Tabitha may just always have a "abnormal-normal heart". He said it was very odd that her heart was shaped this way, but again, as long as it's working, there is no concern. It does by the way, look better than 4 months ago when she last saw him. We will go back in 6 months, just to listen, and do another Echo-cardiogram in a year, to take another look.

Tommorrow, we will finally go get her 6 month shots and have her regular check-up with her normal ped. I am SOOOO thankful for all the prayers that have continued for our little girl. We have been truly blessed with friends and family that pray for her daily. It is definitley working! She is still free of seizures! It's been over a month! WOW! I'm so amazed still, speechless is a good word. Just totally speechless.

Thank you for checking on Tabitha!

Friday, June 25, 2004 10:30 AM CDT

Hello again!
Tabitha is doing so well! We are so excited and over-whelmed really with how great she has been doing! It's hard to believe that tommorrow she will be 6 months old! Man, time really flies! It's also hard to believe that she hasn't had a seizure in almost 3 weeks!!! Words cannot even begin to say what Micheal & I are feeling right now. This is the longest break from seizures she's had in her whole life! It's amazing! It really makes me nervous, and fearful that they will come back, but we are trying not to even think about that! It truly feels like a miracle to us, and we pray everyday that she will continue to make improvements.
Her muscle tone is still down. She still can't support her head or body. I guess it just takes time. I'm still waiting to hear from the Intervention program about her evaluation, I will call them next week for sure unless I hear something sooner. Basically, all they will do is tell us what we can do to help her have better muscle control. I talked to them about this sort of "trembling" type thing she's been doing. It seems like it's when she is trying to control her muscles, but I guess it concerns me because she's never done this before.
Bradley loves his sister so much! It means so much to me everyday just watching him talk to her. He says he loves her more than anything in the world. (besides me) Man, one day I'll be missing these days!
Thanks for checking out Tabby's Page!
Keep ya posted!

Friday, June 18, 2004 2:33 PM CDT

Well, I don't know how many peopleare actually reading this stuff, but I'm putting it all in anyway. Tabitha is doing very well. Today she had her evaluation with the "Rainbow" program. I won't know her results untill next week. All she basically did was see what all Tabitha can or can't do. Most of it I think Tabitha did pretty well, but she didn't really tell me.
I made Tabitha's appt. with the surgeon to have her button removed (the thing in her stomach, there wasn't an opening untill July 19, so looks like she's going to have it for about another month. I think I'm going to call next week and speak with his secretary to see if there's any way to get that appt. moved up.
Still seizure free-(yaaaay), all I can say is keep praying, it must be working.
Keep ya posted on any new updates.

Sunday, June 13, 2004 9:17 AM CDT

Just wanted to give a quick update on our little angel. SEIZURE FREE FOR ONE WEEK! Gosh, I just want to cry! She usually has them when she's waking up from a nap, so everytime she starts to wake up I just pray as hard as I can to "please, don't". It seems to have been working. I pray so much that this problem will soon be ending for her. They seem to scare her so much at times.(and me too) Everybody please, just keep praying. Wouldn't it just be a miracle if it was over?
Also, she has two teeth now! The two lower bottom teeth have popped through. She'll be eating porkchops before we know it!
We'll be going to her regular doctor in about a week or two to have her regular check-up and get those 6 month shots. I'll keep ya posted!

Tuesday, June 8, 2004 1:03 PM CDT

Tabitha is doing great! She weighs 15lbs. and 8oz.! Wow! What a difference surgery can make! She is eating completely by mouth now, and the tube should be coming out in about a month! Praying works!!!
She is still having seizures, usually about one a day in the afternoon. We are trying to get her a neurology appt. ASAP. Right now, the soonest one is November. Yep-November.
She is also starting a program for children with development delays. This should help her get up to speed on things like muscle tone that is not quite as strong as it should be.
I'll keep ya posted with more info as is comes!!!

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