History

Wednesday, February 25, 2009 2:05 PM CST

Ok, so it has again been way too long since I updated this site! Time has just gotten away from me the past few months. Luckily, things have been going really well for Mary. Her seizures are the best they have EVER been. I’m afraid to even say it out loud. We saw Dr. Frost a few weeks ago and he thought she looked great. She will need to have a cat scan and MRI this summer, but other than that we don’t go back to see him until August!

Mary had botox injections in early January. It was not a pleasant experience. He gave her 11 injections total in her neck, bicep and calf. They gave her versed, which is a mild sedative, which helped a little, but she still cried and fought a lot. It was hard to watch. But, the results have been worth going through the procedure. We just followed up with him last week and Dr. Gormley was very pleased with the results! Everything is better as a result of the injections. She is walking heel-toe vs. toe-heel and her neck is looser. We are going to do the injections again on 5/15. Another unexpected result is that her speech has taken off~we think because of the botox! Her neck is much looser so we’re thinking maybe it is just easier for her to talk. Her speech has been so exciting to hear lately! She is saying lots of new words and even putting 2 and 3 words together! It is great.

In March Mary will start dance class again at Kids Abilities! We are so excited! She will be in class with her good friend Kylie so that will make it even more fun. Other than dance, Mary continues with her hectic schedule—PT, OT, Speech and Music Therapy and of course school. I had her conference last night and it was wonderful to hear how far she has come since the beginning of the year. We are so lucky to have such amazing teachers and therapists at school!

Jim is in Washington DC this week (along with people from all over the country) to lobby for funding for TS research. He has been to nearly 75 offices dropping off information and explaining about TS. I’m so proud of him!

Anyway, that is the update. Thank you so much for checking in on Mary! We really appreciate your love and support!!

Love, Eileen

Monday, December 22, 2008 9:50 PM CST

Hello! I found this poem and had to share:

The 12 Days of Christmas

On the first day of Christmas, the good Lord gave to me:
a child with a disability.

On the second day of Christmas, the good Lord gave to me:
a heart full of love for my child with a disability.

On the third day of Christmas, the good Lord gave to me:
an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me:
a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me:
an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me:
a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me:
a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me:
supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me:
remarkable teachers, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me:
an appreciation of small accomplishments, remarkable teachers,supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me:
a sense of pride, an appreciation of small accomplishments, remarkable teachers, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me:
Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable teachers, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

Tuesday, December 2, 2008 9:47 PM CST

Hello! Once again I apologize for the long delay between updates. Since I last wrote, the Hables have been fairly busy. We went to Palm Springs, CA on 11/12 to visit my parents for a few days. We had a great time! The weather was perfect—90 every day! We relaxed a lot and Mary got to have lots of time with Grampy and Grammy! Mary did great on the airplane ride there and back, thanks to the good old DVD player! We ended up flying into San Diego instead of Palm Springs because we got a good deal on tickets. It was a 2.5 hour drive from San Diego to my parent’s house. On the day we came home, we went to Coronado Island and had lunch and got to put our feet in the ocean. It was beautiful! Thanks mom and dad for a wonderful time!

Mary has been doing really well. I volunteered at her school the first day back after being in CA and all the kids came up and hugged her and said that they missed her! It just warmed my heart! They are so sweet to her. She had a week off for Thanksgiving, so today was her first day back. I think she was definitely ready (and so was I!) We had a nice Thanksgiving at my parent’s house and Mary got to play with Tommy and Anna, which she always loves. My mom’s sister Eileen, also came for dinner which was great! Mary latched on to her and wouldn’t leave her side.

Medically, Mary continues to do well. We have seen some seizures in the past few weeks, but nothing major thank goodness! She will be having botox injections into her neck, calf, and ankle on 1/5/09. This will hopefully loosen up her muscles a bit. She is so tight when she walks that she pushes down on her arch and her bone is beginning to bow out. Also, her neck has been tight for years so this should give her some relief. This will be done at Gillette and we are going to try and just give her versed or use a gas mask, rather than go for the full sedation.
So, that is about it! I hope you are all doing well and having a wonderful holiday season! Check out the slideshow below for some updated pictures!
Love, Eileen

Wednesday, October 29, 2008 8:49 PM CDT

Hello! Thank you for checking in on Mary. I hope that you are all doing well! I am happy to report that things are going great with Mary! School continues to be wonderful! I want to thank all of the amazing people that help her so much at school! All of her therapists, teachers, her para Cheryl, and of course Mrs. Smith! We feel so blessed that Mary is going to Rice Lake. She LOVES school and still doesn’t want it to end each day. We went to conferences a couple weeks ago and we were so excited to hear how well things are going. They told us that the other kids really like Mary and are always willing to help her out and play with her. In the pictures below you can see Mary and her friend Olivia. It is so cute—they hold hands and Mary gives her hugs. We also heard that Mary has a little “boyfriend”. His name is Tommy and apparently she can’t concentrate when she sits next to him! I guess she’s starting early! It just warms my heart to hear how welcoming and understanding 5 years olds can be. The physical therapist who has been working with Mary since she was three said that there is always one child in the school that everyone knows and likes, and at Rice Lake that child is Mary!

We have had a busy time these past few weeks. We went to Madeline Island during MEA weekend. Jim’s parents own a beautiful cottage there and we had such a wonderful time. We went to the beach to see Lake Superior and Mary was able to take walks in the woods and see a real campfire! The best part was being able to spend time with her Grammy and Grampy! Then last weekend I went to an all day seminar on IEP’s at Kids Abilities, where Mary gets therapy. For those of you who don’t know, IEP stands for “Individualized education plan. It is the plan that the school writes up regarding her goals and other specific things regarding her care. During this meeting I realized how lucky we are to be in the district we are in! Thank you to Grammy Judy for staying over and watching Mary on Saturday morning so that I could go to the meeting! Mary had a field Trip last Friday to the Hugo Animal Farm. I was able to go with and it was a lot of fun. The kids got to see a real farm and pet lots of animals. Mary had a blast! You can see some pictures below.

We head to Palm Springs on November 12th to see my parents. I’m excited to get away—apparently it is 85 degrees there now! It should be a fun trip.

Medically, Mary has been doing pretty well. We have seen a slight increase in seizures these past couple of weeks. It is so frustrating. I increased her Vigabatrin by ½ a pill tonight (being the neurologist that I am!) Don’t worry, I was told a long time ago that she could be bumped up to this dose if needed. Hopefully this small increase will help. We also got the results back on her eye test, and everything looked good. We are able to continue on the Vigabatrin, thank goodness. She will have another test in six months. Hopefully at that time she will also get her “wandering eye” fixed. I can’t wait as this has been bugging me for such a long time.

Thank you for all of your prayers, we really appreciate it! Don't forget to look at the slideshow below!
Lots of Love,
Eileen

Monday, September 29, 2008 2:58 PM CDT

Hello! I’m so sorry for the month long gap between updates. Thanks for coming back to check on us. Mary started kindergarten and it is going great! She goes 5 days a week for 2.5 hrs each day. She has such a wonderful team working with her! We are so blessed. I can barely get her off the school bus each day. When I ask her if she had fun at school she just says “more, more!” Her kindergarten teacher, Mrs. Stromback, is just amazing and does everything she can to include Mary into the class and the activities. In addition to her regular teacher, she also has many other important people that work with her. Mary has a one-on-one para who is with her the entire time she is there. Her name is Cheryl and she is so great! She is so warm and kind. We are so lucky! Mary also works with a special ed teacher, occupational therapist, physical therapist and speech therapist. I just cannot say enough about these wonderful people! They go above and beyond for the kids that they work with. I would not want Mary to be at any other school! Her speech therapist, Beth Malarck, is a wiz on the Dynavox and has already helped us so much with that. Thanks so much Beth! She makes sure that Mary uses the device as much as possible throughout the school day. This is so important, since that device is essentially her voice. I cannot say enough how lucky we are because there are many schools that refuse to use a child’s device for reasons I don’t understand.

Medically, Mary continues to do great. She had gone several weeks without any noticeable seizures, but has had 2 that I’ve seen in the past week. I’m hoping that is just a fluke and nothing more. She continues to take 4 seizure meds and numerous vitamin supplements. This includes Vigabatrin, which as most of you know, we get in Mexico. Since this drug has a possible side effect of retinal detachment we have to monitor her eyes closely. She had the first eye test, called an ERG, in May. At that time it came back that her results were a bit abnormal. We are going to repeat this test on Thursday. If the results are the same, then the abnormality is likely not due to Vigabatrin. If they are worse, then it may be due to that. Please pray that the results are the same! It would be terrible if she had to go off of Vigabatrin as it has helped her seizures so much.

We are also going to add a physical medicine doctor to her already extensive team! Mary’s wonderful physical therapist, Carol, has noticed that her right leg is slightly longer than her left. Apparently this is common in kids and it will just even out as they grow. However, Mary is compensating for this by pushing down on her arch, which is causing the bone in her leg to bow out. I’m not sure what the dr. might do, but I guess injecting botox might help relax the muscle a bit. So, we’ll see what happens!

Other exciting news is that Mary’s speech is really coming along! She tries to copy so many words now and is actually coming quite close to most that she tries to say. She is also babbling quite a bit too! It is so fun to hear her saying new things and experimenting with sounds. I just keep praying that one of these days she’ll have a breakthrough and say an entire sentence!

We went to the Minnesota Zoo this past weekend with our good friends Jon, Trisha and their adorable 2 year old Madelyne. We started in the “tropics” part of the zoo, which is indoors. Mary was having a great time checking out all the fish and daddy was helping her look over the ledge. We then came upon the Coral Reef exhibit. It is a large tank that you can look over and see the top, and then go down a level and there is glass so you can see inside the tank. We were looking down at the top of the tank and Jim was holding Mary up so she could see the water. All was well until I heard Mary start laughing hysterically and I heard a “plop” sound. She thought it would be SO funny to throw her glasses into the fish tank. I almost didn’t believe that she did it, but then I shouldn’t have been surprised! We then walked down to the lower part of the tank and there they were, right on the bottom! While we were looking at them a large fish came by and started to nibble on them a bit. That about pushed me over the edge! People were laughing, but I just wasn’t seeing the humor of her $200 glasses sitting on the bottom of the fish tank. Just then, a WONDERFUL volunteer came by and said she would notify someone about the incident. We gave her our cell phone number and about 30 minutes later got a message that we could go pick her glasses up at guest services! Other than a tiny scratch from that fish’s teeth, they are in good condition. I just wish we could have seen the diver go down and retrieve them! I am able to laugh about it now—especially since we got them back!

So, I guess that is about it for now! I added some new pictures below! Have a great weekend!
Love, Eileen

Wednesday, August 20, 2008 10:25 PM CDT

Hello! It is so hard to believe that summer is coming to an end. In about 2 weeks my baby will be in kindergarten! Next Tuesday we go to the parent orientation. They have a separate meeting for the special ed students which will be great so that we can meet the new special ed teacher. We will also go to the "regular" ed meeting as well. We met her kindergarten teacher this summer and we love her already!

Her device is having some technical problems which we unfortunately were unable to solve over the phone with Dynavox. We had to send it in to be repaired. Hopefully we will get it back within the next week or two. Mary is definitely missing it and so are we! She uses it so much that I feel kind of lost without it.

Mary has been doing great! She got her haircut yesterday, the first one in about 7 months since we've been trying to grow out her hair. It seems that her hair has been growing out rather than down! She has had such "big" hair lately I couldn't take it anymore! They just trimmed off the split ends and it made such a difference! But, the best part about it is that she didn't cry at all during the entire haircut! I was so excited I couldn't believe it! Today my mom and I took her to the mall to get some new school clothes. We got some really cute outfits for her-I'm ready for fall now so she can wear them!

Other great news is that we have Mary signed up for Sunday School! I wasn't sure if this would pan out because she would need someone to help her if she went. Well, I think God really wants us to get back into going to church because the director called me and told me that Mary's 2 paras from school last year had volunteered to do the job! I as still so overwhelmed at their kindness. They know Mary so well and now I can just drop her off and not worry at all. Thank you so much to Julie and Colleen! Words cannot even begin to express our appreciation for what you're doing. I'm so excited to get back into going to church again.

This weekend is going to be kind of busy. We are having a mini block party with our neighbors on Friday night and Sat Jim has to work and is going to haul rock afterward in our ongoing landscaping project! Sunday I'm going to lunch with my high school friends.

Thanks for stopping by!
Love, Eileen

Love, Eileen

Monday, August 11, 2008 8:47 PM CDT

Hello! Thank you for checking in on Mary. Things have been going well since the last update. Mary had laser surgery on her face this past Thursday and everything went just fine. For some reason she seems to be healing faster than normal. I don’t know why, but her face didn’t seem to be as red as it usually is right after the surgery. It gets better every day. The other thing that happened is that she sprained her ankle last week. She was in the swing at therapy and somehow her foot bent back the wrong way. We went to the ER and nothing was broken. She refused to walk on it for a couple of days, but now she is almost back to normal.

At her pre-op appt for the laser surgery, we found out that she has grown 1 inch since May! She is now 42 ½ inches and 39 lbs. This puts in her in the 12th percentile for weight and the 5th percentile for height. So she is short and skinny! And I was afraid that as a baby when she weighed 20 lbs at six months she was going to be obese!

Her seizures have been GREAT lately! I’m afraid to say it outloud. I was worried because she started her 5 year vaccines at the end of July (we’re a year behind!) All of her previous vaccines are up to date, but since she didn’t go to kindergarten last year I decided to wait on getting them. With all the info that has come out lately, I am really paranoid about it. So, I talked to her pediatrician and we are going to do them all one at a time, one month apart. She had the Dtap in July and will have the Chicken Pox one next. So far she has had no reaction to the Dtap, thank god! She won’t have all of them when school starts so I’m sure I’ll have to fill out a something to explain it.

The Stroll for Epilepsy is this Thursday at Lake Phalen. We are so excited to go—this is the first year we will have been able to make it. We are walking to support Mary, all the other sweet kids with TS and our friends Kristin and Doug and their son Gabriel who has epilepsy as well. We will also be remembering Drew and McKenna Olson who both had epilepsy and passed away due to the horrible Alper’s disease.

Other than that we have been busy getting our new siding done and trying to spruce up the landscaping around our house. The siding is all done except for the vinyl shakes that were actually supposed to be here last week! We are replanting things and doing a general clean up of all the shrubs in our yard. It is proving to be a much bigger project than we anticipated, but doesn’t it always go that way?

Thank you so much for checking in!
Love, Eileen

Saturday, July 12, 2008 9:45 PM CDT

Hello!

Well, things are starting to calm down a bit at the Hable house. Mary finished summer school last Thursday, which is kind of sad because she (and I) loved it! Her teacher and all the para’s at the summer school program were just wonderful! We really are blessed to be in our school district. I couldn’t ask for more loving, caring people. The week of 4th of July they had a parade and all the kids wore t-shirts and hats they had decorated. It was so cute!

Mary continues to do really well. She is saying more words all the time. The other day we were outside and I said “look at the bird” and she just blurts out “bird”. A year ago she wouldn’t have been able to imitate a word like that. Her seizures are doing well also. I think the increase in the B-6 has definitely helped. She had one today that was so mild I barely noticed it, and she was completely responsive and “with it” when she had it. So, we will hold off on increasing the Vigabatrin at the moment!

Mary starts back to Music Therapy on Monday and boy, is she excited to see Beth! It will be wonderful to get back in the swing of music.

We had a great visit with Jim’s sister Rebecca the 4th of July weekend. She is here from Turkey, where she teaches English. She only gets home once a year so it was wonderful to be able to spend some time with her. Today we went to a baby shower for my cousin’s wife, Holly. Mary had so much fun playing with all the other little girls. It was fun to see! Tomorrow we are going to Jim’s sister Amy’s house for lunch with the Hables. Rebecca leaves on Monday so it will be nice to have some more time with her!
I put together another “montage” so you can see pictures from what we have been up to this summer. Thanks for checking in on Mary! Your prayers mean the world to us!
Love, Eileen

Make an on-line slide show at www.OneTrueMedia.com

Tuesday, July 1, 2008 9:07 PM CDT

Ok, so I know it has been a VERY long time since I have updated. The time has just gotten away from me. Every time I sat down to actually do an update I would get interrupted and then it would never get done. So, where do I begin to recap the last month and a half??

Since the walk, we have been very busy! On May 26th Mary had an eye test done at the U of MN to determine if the Vigabatrin is causing any problems with her retina. We found out in early June that the test came back showing that she may have some toxicity from it. I can’t explain it too well, but during the test they would shine a light in her eyes and then measure how long it would take for the eye to respond to that light. Apparently her response time was longer than normal. So the plan right now is to keep her on the Vigab until we do a repeat eye test in September. There is a chance that the slow response time is just her and not due to the Vigab. When they repeat the test if the result is the same she will likely be able to stay on it. If it is worse, we will have to come off of the drug that has helped her seizures so much. It will be really devastating if she is unable to continue on that drug. We will have to wait and see what happens.

On June 5th, Mary had her preschool graduation! They had a nice little ceremony at school and she wore a real graduation cap! We are going to miss all the staff at early childhood so much! It was so hard to say goodbye to all of them. We will definitely have to go back and visit next year!

On June 7th we went to Myrtle Beach for 7 days with my parents, my sister and her family and my sister’s in-laws. We had such a fabulous time! It was hot and humid—perfect pool and beach weather. Mary had so much fun swimming and being around Grammy and Grampy every day! We are already looking forward to next year!

When we got back from Myrtle Beach Mary started summer school right away. She is going Tues-Thurs until July 10th. She is also busy with all of her therapies, dance class, gymnastics and a class for her Augmentative Communication device. She gets to ride a “mid-size” school bus, which has been very exciting for her! I also found out that she got the teacher I requested for kindergarten, so that was great news!

On June 23rd Mary turned 6!! We had a birthday party for her and it was so much fun. We got the “bouncy castle” again and it was a big hit! We are so proud of her! It is really hard to believe that she is a big six year old!

Healthwise, Mary has been doing well. She is having 3-4 seizures per week now. They have changed a bit and are more like “clusters”. Basically when she is having it she makes a small movement of her mouth every few seconds until it stops. They last from 30-45 seconds. We have doubled her amount of B-6 and are hoping that will stop them. If it doesn’t, we will increase the Vigabatrin.

Another exciting thing is that she has started saying two word phrases! She is saying things like “I want”, “no more”, “good girl”. It is so amazing to hear her saying these words together—we have waited 6 years to hear it!

One last thing I would ask is that you pray for a wonderful family that I have gotten to know. Meg and Will Roth lost their beautiful daughter Tori to cancer in January 2007. They welcomed a beautiful baby boy into the world this past Saturday. Unfortunately he is having some problems with his heart and could use lots of prayers and well wishes. His website is: www.caringbridge.org/visit/frankieroth.

Thanks for checking in on Mary! I promise I will do a better job of updating the site!
Love, Eileen

Sunday, May 18, 2008 10:32 PM CDT

Good Evening!

Thank you from the bottom of our hearts to everyone who participated in The TS Walk on Saturday. It was a beautiful day and we were just honored at all the people who came to support our Mary. We are truly blessed to have such wonderful family and friends. Your support means the world to us--thank you so much.

In addition to being a beautiful day, the walk was hugely successful! Over $60,000 was raised!! All of the money raised goes toward research and helping those affected by Tuberous Sclerosis.

Thanks again to everyone!

Love, Jim, Eileen and Mary

Here are some pictures from Saturday:

Saturday, April 19, 2008 9:46 PM CDT

Hello!

We have had a busy week. On Tuesday we went to Mary’s eye appt at the U of Mn. I was really dreading it but it turned out to not be as bad as I thought it would be. They actually put her through a lot of testing—asking her to point to lines on a board which gradually got lighter, and looking at a barking dog/clucking chicken on a video! She also put her chin on one of those machines so he could look right in her eye! That one came with some help from Jim holding her in place, but to our surprise she didn’t cry when she had to do it! The purpose of the appt was for them to do an exam on her to establish her as a patient in their clinic. They wanted to do this before having her do the ERG test. The main doctor (Dr. Bothun) was super nice. He explained some things that I didn’t really understand before. I was under the impression that if the Vigabatrin was going to damage her vision it was going to happen and there was no way of catching it before the major damage was done. But, he gave us good news in that the ERG will pick up on subtle changes and we can stop the medication before severe damage was done. She will have this test every 6 months, the first one being on May 27th. One other thing we talked about was Mary’s wandering eye. It is worse when she is focusing on things far away. So, the exciting thing is that we are going to have this surgically corrected when she has her ERG in December. I wanted to do it in May, but they want to get additional testing and measurements before doing the surgery.

Today Mary had her first “bowling league”. It was SO cute! She has never bowled before but I somehow knew it would be a hit! It was even more fun because her good friend Liddy was there with her mom Kim and Grandpa Kurt! Here are some pictures:

Otherwise, Mary continues to do well. We had her IEP meeting this past Tuesday too. It went great. We are so lucky to have such a wonderful team of therapists and teachers! Thank you all so very much! This summer she will go to Centerville Elementary Mon-Thurs for 3 hrs each day. This is a special program for special needs kids who are going into kindergarten. I think it will be really good for her! Next year she will attend half-day kindergarten at Rice Lake Elementary. We are also excited about that and feel really lucky to live in such a wonderful school district.

Her seizures have been great—about 1-2 per week. We just pray that it continues that way! We go see Dr. Frost on May 16th and we are going to do a full blood work-up to make sure everything is how it is supposed to be.

Thanks for checking in on Mary and have a wonderful rest of the weekend!

Love, Eileen

Monday, April 14, 2008 9:50 PM CDT

Hello!

I just had to share video from Mary's dance class today! She was super crabby on the way and I thought the whole class today would be a flop. But, she suprised me and did great!

Thursday, April 10, 2008 9:32 PM CDT

**New photos in photo album**
Hello!

I finally got a chance to update the website and add some new pictures! Things have been going well for Mary. She had her first dance class this past Monday and had a blast! It was extra fun because her good friends Kylie and Lydia were also in the class. I think us moms had more fun watching though! It was just about the cutest thing I’ve ever seen. They had a dance bar for them to walk with and by the end of the class Mary was actually “sashaying”!

She is enjoying using her Dynavox, but it is definitely going to be a process to get it set up to how we want it. Jim went to a “Getting Started” class and learned a few of the basic things you can do. It is really exciting how much the device can do and how it will be able to grow with her.

We have Mary’s big IEP meeting this Tuesday. This is where we meet with all of her teachers and therapists to set up an education plan for the rest of this year and next year for Kindergarten. It will be great to sit down and talk with everyone to see where she is at and what new goals we can create for her to work toward. These meetings are always a bit bittersweet because we are reminded of her delays. But, she is doing new things everyday and we have to be grateful for that.

One new thing is that Mary got new AFO’s, which are basically plastic leg braces. They cover her feet and go up right below her knee. She isn’t too thrilled with them, but that is understandable. The reason we got them is to help her walk more “heel-toe” and strengthen her upper body. She tends to hunch over a bit when she walks so hopefully these will help with that as well. Here is a picture of what they look like!

The 2008 Step Forward to Cure TS is just around the corner at Harriet Island! It is on Sat. May 17th. If you’d like to be a member of our team, please let us know! We would love to have you!

Thanks so much for checking in!
Love, Eileen

Wednesday, April 2, 2008 9:54 PM CDT

WISHES IN THE DARK

Sometimes when she's sleeping
I can see in my mind's eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she's sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she's sleeping
she seems so whole and well
I can't believe she won't awaken
with dreams of which to tell.

Sometimes when she's sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she's sleeping
and my eyes ache with tears unshed,
I pray she'll always be full of peace
as she slumbers in her bed.

Sometimes when she's sleeping
I can almost hear her say
"I love you, Mom, with my heart
and my soul, each and every day".
But always when she's sleeping
I am full of pride at the miracle that is my daughter
and the perfection that is inside.

Thursday, March 27, 2008 7:30 PM CDT

Sweet Caroline went to heaven yesterday. Please pray for her family. If you are able, please visit her website and let the Vetter family know you are thinking of them. I can't imagine their immense grief.

Her website is: www.caringbridge.org/visit/carolineruby

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

On a lighter note, things have been going well for Mary. We had a wonderful Easter with the Hables. Mary had so much fun playing with her cousins, Addie and Amanda. They played with Grammy's hats with her and made her laugh so hard! It was just so fun to see her playing with them and having so much fun. We had Grandma Judy's very special Italian Lasagne for dinner ~ it was FANTASTIC!! And Mary loved it too. She actually ate at the table with everyone else. Quite different from Christmas when we had to go into seclusion in order to get her to eat! It was just a wonderful, fun day!

Mary's schedule continues to be busy! Starting April 7th, she is going to go to her dance class at Kids Abilities. I am SO excited! Then horse riding starts at the end of April, and we may also do a little bowling group as well. She is off of school now tomorrow and all of next week for spring break. She still has her private therapies but we should have time to do some other fun things. We hope to go to the pool at the "Y" one of the days with our neighbors Lynne and Michael.

Anyway, thanks for stopping and keep praying!
Love, Eileen

Friday, March 21, 2008 8:38 PM CDT

Hello!

Things have been going well at the Hable house. Mary's Dynavox computer arrived last Friday! She was so excited when she saw it. Our wonderful speech therapist, Rebecca, loaded it up for us with pages that Mary is familiar with so we could get started. Thanks Rebecca!! I started to read the manual, but quickly got overwhelmed. The things you can do are endless. It really is amazing. I'm more of a learn-by-doing type person, so I need to just spend some time working on it. Mary, on the other hand, has quickly picked up on where her favorite pages are and can navigate pretty fast to find what she wants!

We spent last Sunday celebrating an early Easter with my parents since they are going back to CA tomorrow until early May. We had a great time doing an egg hunt and coloring eggs! And of course Mary LOVED playing with her grandparents and cousins. We are going to spend Easter with the Hables this Sunday in Bloomer, WI. It will be so much fun to see everyone and Mary can't stop talking about seeing her "Grammy Hats" as she calls her! Judy has a wonderful hat collection that she lets Mary play with. The minute we get to their house Mary heads up to play with them.

Other good news is that we got in to therapeutic horseback riding at our preferred location! We will now go to Scandia instead of Osceola, which is about half the time. That starts at the end of April. And, the other fun thing is that Mary's therapy clinic is going to have a special needs dance class! I can't wait! They are going to do a trial run since this is the first time they have held this type of class. I have already ordered her a very cute pink leotard, skirt and leg warmers!

The seizures continue to be pretty good! She had one tonight that wasn't too bad. She was able to respond during it and it lasted about 30-45 seconds. She is having 1-2 per week. I'm not going to complain~she used to have that many in a matter of hours!

Please pray for our friend Caroline. Her website is listed above. We love you Caroline!

Thanks for checking in, and we hope that you all have a wonderful and safe Easter weekend!
Love, Eileen

Friday, March 7, 2008 8:26 PM CST

Good Evening!

I'm sorry for the long delay in updates. Things have been kind of hectic around here! Jim was in DC the last week of February and had a great time. He personally visited 105 senators and representatives offices. Many of the offices were very receptive and interested in hearing about Tuberous Sclerosis. We are hoping that the funding for research for TS will increase in 2008. Maybe someday they will find a cure for this crappy disease!

We got really exciting news today! The Dynavox computer that we have been hoping to get for Mary was finally approved by Medical Assistance. Our primary insurance had given their approval back in December but MA was another story. They had sent me three denial letters not that long ago, so I was very suprised when the Dynavox rep called me today and said that everything had been approved. They are going to ship it early next week so we should have it by Thurs or Friday. Jim is going to be taking class just to learn how to use it--it can do so many things that we want to maximize what we do with it.

Mary has been doing really great lately. We started the Therapeutic Listening program about 2 weeks ago. She listens to special CDs on high quality headphones twice a day for 30 min each time. At first I thought there was no way she would ever keep them on, but she has really suprised me! She actually likes doing it and asks to put them on. I have to say that since we started this program, we have seen lots of improvements. The biggest one is that she is saying more words. It used to be that if you said a word like "girl" she would look at you and try to say it but it would come out as "bah". Now, she is actually saying "grr". She is able to copy some words that you ask her to say. She is also doing puzzles which is something she was not really interested in before. And, one other big thing that she did was to go potty at school! I was with her in the bathroom when she went but still, this is a huge accomplishment. We have been trying to get her to go at school for 2 years now. She is very leary to go potty somewhere other than home. So that was really exciting! We will do the listening program for 12 weeks and then at that time see what changes there are and decide if we will continue or take a break. We are also hoping to see improvement in auditory defensiveness and attention span. So, I'll keep you posted!

We finally scheduled her eye appointment and test at the U of Mn. She has to have this test called an ERG to make sure that her retina is healthy and hasn't been damaged by the Vigabatrin. Of course they are making us go for a complete eye exam, and said we should plan on being there 3-4 hours. That should be pleasant. The exam will be on 4/15, and the ERG will not be until 5/27. That was the soonest they had open. She will be sedated for that, and after reading what they do--putting contact lenses on her eyes with electrodes attached--it will be a good thing that she is sleeping!

Seizure-wise, things have never been better! We feel so blessed. She is having maybe one per week that we see. I always have to put that disclaimer in there! Hopefully things will continue being this good. Keep the prayers coming!

We started the the group music therapy class on Sat mornings and it went really well last week. It is Mary, Kylie and another little boy in the class. I was a little worried about how Mary would be with Beth working with other kids and not totally focusing on her, but it wasn't a problem at all. I think all the kids had a great time.

Well, that is about all for now. Thanks so much for stopping by~we appreciate it!
Love, Eileen

Sunday, February 17, 2008 2:18 PM CST

Hello!

I hope that you are having a good weekend. Ours has been fairly quiet which was nice. We went to see Dr. Ballard (eye doctor) this past Friday. She is seeing him every 4 months to check on her "wandering eye". I also had to inform him on this visit that she is again on Vigabatrin. Since the major side effect of this drug is retinal detachment, it is very important for him to monitor how she is doing. As far as the wandering, he said that she has good eye control and doesn't think we need to do drops again. I told him that I really only notice it when she is tired or in pictures. He said that is pretty common but it is not severe enough to start the drops again. So, that sounds good to me. As far as the effects of the Vigabatrin, we will need to get an ERG test scheduled. This is an eye test that evaluates the function of the film (retina) that lines the inside of the eye. It will tell us if the cells in the retina are functioning properly. She will need to be put under anesthesia for this test as well, and it will need to be done every 6 months to make sure all is ok. So, we need to get that set up in the near future. It will be done at the U of MN, unfortunately Dr. Ballard's office doesn't have the equipment for that test.

Mary's seizures have been great. She has had 2 that we've seen in the week since her laser surgery so we aren't complaining too much. She got to go swimming to the "Y" with Jim yesterday and had a blast. There isn't school on Monday, but we still have therapy and then Tommy and Anna are coming in the afternoon for a couple of hours.

Thanks for stopping by and have a great week!

Love, Eileen

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Please be sure to check out Amy & Jason Beecher's website at www.journeyforjess.com. Jason is embarking on an amazing journey in memory of his beautiful daughter, Jess Marie.

Tuesday, February 12, 2008 8:28 PM CST

Hello!

I meant to do an update the other night but I just got the picture and back ground changed and Mary woke up. I never did get back to the website.

She is doing pretty good after having her laser surgery last Thursday. She is still purple but it is getting better every day. The surgery itself went fine with just one scary moment--she actually stopped breathing when they gave her the anesthesia. What happened is that prior to the surgery they always give her the drug Versed, which is an anti-anxiety to calm her down. This helps so much with putting the IV in. They gave her the same dose as always, but for some reason it REALLY doped her up. She was so out of it and didn't even cry when they put the IV in! That is very unusual for Mary! So, then we went in the room where they do the surgery and they gave her the Propofal (anesthesia) and she started breathing really hard at first. They said that it was just due to her feeling the anesthesia in her head. The next thing I know the oxygen machine is going off and they cranked her head back to open up her airway. They were so calm about everything you barely would have known that there was a problem! The dermatologist then asked if she should be woken up or if he should just start zapping her. The anesthesiologist said to just go ahead an start. Well, with the first zap it startled her enough so that her breathing went back to normal immediately. The whole procedure only takes about 5 min so it was over and she was waking up within 30 min of being wheeled back into the room. We did get some good news though--he said that usually by her age the angiofibromas are starting to get worse and bigger. But, in her case that is not true. He feels that they have gotten better and not bigger. So, it appears that the laser is doing it's job and we were very happy to hear that!

We stayed home this past weekend mainly because of the cold and Mary's face and eyes were puffy until yesterday. Her seizures have been pretty good. She had gone for about 2 weeks without having one but then had one when we got home from the surgery and then I'm pretty sure she had one today when I was with her at school. Hopefully this was just a fluke and they will go away again! It is really hard to believe that her seizures are doing as good as they are. I honestly never thought we'd get to a point like this. Going from having 20 minute cluster seizures when she was a baby to where we are now--I never thought it would happen. I am just so grateful to God that she is doing as well as she is.

Mary's schedule continues to be busy with school and therapy. We are going to start a new program called Therapeutic Listening. I can't explain it very well but a short explanation that I have is:

"Therapeutic listening is part of an individually designed treatment program administered by an Occupational Therapist. During this treatment, the client listens to specifically designed music while involved in other therapeutic activities. The music may be filtered to
activate certain harmonics for specific therapeutic purposes."

Basically, she listens to specific CD's twice a day 30 min each time. Mary has some issues with auditory defensiveness, attention and of course receptive and expressive language delays. From what I've read this has been very effective with many children, so hopefully Mary will be one of them!

And, starting in March, she is going to have group music therapy at Kids Abilities. This will be taught by her Music Therapist that she has been seeing individually for the past few years. She will continue with her one-on-one sessions but we are excited to have her involved in a group! So, she will have have some type of therapy 6 days per week. On one hand I feel bad that she is so busy, but to her therapy is fun. She LOVES all of her therapists and if she doesn't have anything during the day gets so bored. We'll continue to do all that we can to help her development.

Jim is getting ready to go to Washington DC to lobby for funding for TS. He will go the last week of February. He always has a great time on this trip and I'm so glad that he is able to be a part of the TS Alliance.

Well, I think that is about it for now. Thanks for stopping by! We appreciate your support so much.

Love, Eileen

Wednesday, January 30, 2008 8:07 PM CST

Hello!

I hope that you are all staying warm during this frigid weather. Mary has been doing really well this past week. She hasn't had a seizure (that we've seen) since we went to Sesame Street Live which is such a blessing! She did great at music therapy today. Beth was singing BINGO and she actually copied her at the B*I*N*G*O part. She said every letter except for the "G"!!!! It was so wonderful to hear and she was so proud of herself. Jim took her swimming to the Y last weekend and she had a blast. She doesn't seem to have a problem going there anymore since she knows that she will be going swimming!!

Mary's schedule is still fairly busy. Next week we have the dreaded laser surgery on her face. We have her pre-op appt on Wed, and the surgery is on Friday. So, she'll miss therapy on Thurs and Fri which is a bummer. She should be able to get back to her routine by Monday, other than the fact that her face will look horrible. I just have to keep in mind that it is best in the long run and we have gotten though this before.

Please pray for our friend Caroline and her family. Her mom, Abigail, is part of my epilepsy moms group. Caroline has been through so much in the past few years. Take a minute to visit her site and leave her family some words of encouragement. The site is: www.caringbridge.org/visit/carolineruby.

Also, you may know another mom in my group lost her beautiful daughter Jess this past June. Her husband is doing a "Journey for Jess" next summer. He is going to the national parks and taking pictures. He is going to donate all the money raised to the Epilepsy Foundation and the Tuberous Sclerosis Alliance. Please check out his website and help if you can: www.journeyforjess.com

Thank you for stopping by--your support keeps us going.
Love, Eileen

Saturday, January 19, 2008 9:43 PM CST

Hello!!

Well, I just wrote a huge, long update and for some reason it didn't post onto the site. Mary has been doing really well. I spoke to her WONDERFUL team therapists about her behavior and we are going to try a couple of things. The first thing we are going to do is what is called "Social Stories". This is something that is typically used for kids with Autism, but may also work with Mary. I think she gets upset sometimes because she doesn't understand what is going to happen next. The Social Story is a short story you read to her that explains in very simple terms why a certain activity is done and what is going to happen. We are also going to try and use some pictures to show her what we are going to do next. So, we'll see if that helps!

We went to Sesame Street Live today and Mary had a blast!! She was dancing in the aisle and clapped and smiled thoughout almost the whole thing. She was so excited--too excited actually--because she had 2 seizures during the show. Quite a disappointment since we haven't seen any seizures in about 2 weeks. But, she still had fun and I'm so glad we went!

We did end up joining the YMCA so we plan to go to the pool tomorrow. Mary loves swimming so hopefully she will start to associate going there with having fun.

Have a great rest of the weekend and stay warm!!!
Love, Eileen

Sunday, January 13, 2008 10:00 PM CST

Good Evening!

I hope everyone had a nice weekend. It always goes by so fast of course. We went to my cousin's (whose name also happens to be Mary!) wedding on Sat and it was just beautiful. Congratulations Mary and Nick!!! We brought Mary with to the church, which I should have known was going to be a mistake. Jim had to take her out almost immediately. She started with some very loud "HI"s and wouldn't stop. The more you say be quiet, the louder she goes. So, Jim and Mary were in the church basement for the entire wedding. The reception was a ton of fun though! She had three cousins there ranging in age from 3.5-8 and she had so much fun with them! She actually went to seek them out to dance--I could not believe it. At one point the four of them were holding hands dancing in a circle. I was practically in tears seeing her with other kids and trying to be their friend. I would try to grab her hand to dance and she would shake me away and look to find her cousins!

We had some rough behavior today. We went to the YMCA to get a tour and get info since we're thinking about joining. As soon as we walked in she saw the pool and was excited about that but then started to cry. She will do that fairly often when we go to a new place like that. And I don't mean shedding a few tears--I mean full fledged wailing. It was so frustrating. This continued off and on throughout the tour and when the woman was explaining the fees and everything. It is so hard because she can't tell us what is upsetting her. I don't know if she's scared or what. I suppose it could also be some kind of sensory problem. I'm going to ask her therapists tomorrow if they have any suggestions. I don't know if we need to take her to a psychologist of some sort or what the answer is.

Some good news is that we haven't seen a seizure in a week! I feel so blessed that she is doing so well that way. Just pray that this seizure free streak continues for a long time!

Have a great week!!
Love, Eileen

Sunday, January 13, 2008 10:00 PM CST

Friday, January 11, 2008 8:46 PM CST

Good Evening!

Well, I jumped the gun a bit on the Dynavox. We are still getting it, but I found out that the approval from Preferred One is subject to our 20% copayment. So, they are now sending the claim through Medical Assistance to see if they will pick up the difference. They hopefully will, since our primary insurance is taking on most of the liability, but who knows with MA. So, it will be a while longer before we get it. She continues to do great with the device in speech therapy and at school. She is just so motivated by it! I hope and pray that once we do get it and she is using it on a consistant basis her speech will pick up. She is trying more than ever though to say words. They are mostly approximations, but I'll take it! She is so proud of herself when she does it--she tries so hard!

I added some pictures of our trip to the Children's Museum last weekend. We went to see the Sesame Street exhibit. She has so much fun there--especially playing in the water!

Other news...we got 22 new windows today! We had damage from the hail storm in August (which has also gotten us a new roof!) so those were finally installed. These windows were needed anyway, so it was nice to get them and have them paid for by our insurance! Tomorrow we are going to my cousin's wedding which should be a fun time. Mary loves to dance so I'll probably have lots of pictures to add!

Thanks so much for checking in--we are so grateful for your support!
Love, Eileen

Wednesday, January 2, 2008 9:00 PM CST

Happy New Year!!

I hope that everyone had a wonderful Christmas. I apologize for the long gap in updates. It has been a hectic and sometimes trying few weeks. First of all, we had a great Christmas. We spent Christmas Eve at my parents house along with my sister and her family. It was a great day of sledding, cookie decorating and of course opening presents. On Christmas Day we went to Bloomer to see the Hables. It was another fun day of presents, food, and great time with family.

Jim was off from the Thurs before Christmas until he went back today so it was really nice to be able to spend some family time together. We did some things around the house, saw friends and just relaxed! Mary LOVED having Jim home and today I think she was wondering where he was. She kept asking for Daddy.

Mary goes back to school tomorrow which I think will be a good thing. It is hard for her to not have her day full of activities. I think she just gets plain bored because she is so used to having so much going on each day. She is such a sweet girl, but can also be a challenge to spend all day every day with. Eating is getting to be an issue again. If she is motivated with a food, then there is no problem. She would be in heaven if we would just let her eat Shoe String Potato Chips for every meal. Lately it doesn't matter what I make, she will look at it and say "NO" before I even get it to the table. I talked to the feeding therapist again today and we just need to stick to our guns. We have been bad about getting her books and toys to play with while she eats but no more. It is going to be hard but we need to make her understand that when you are at the table you eat and not do 10 other things in addition to that. I have to thank Heather(OT) for giving me so much information about the feeding. I don't know what I would do if I didn't have her to go to with all of my questions! She is so knowledgable about it all and we are so grateful to have her helping with this issue!

We also got some GREAT news for the New Year--our insurance approved the Dynavox (augmentative communication device)!!!!!!! We are so excited! This is a small computer with a touch screen that will help Mary to communicate better. I really think that if she could get her wants and needs across to us her behaviour will improve. I'm not sure when we'll get it but we were all shocked, including the Speech Therapist that Preferred One has agreed to cover the whole thing. It is quite pricey--about $7000, so that is why it is such a big deal. I have to once again thank Rebecca the Speech Therapist for working so hard on the report and preparing everything that was submitted. It was a ton of paperwork and hassle to get everything done that they needed. She even delivered a form for our doctor to sign by hand to their clinic!!! We are so blessed to have such wonderful people like her helping us through all of these things. Thank You Rebecca!!!

Anyway, seizure-wise things have been pretty good. She is averaging about 1 per day so I can't complain too much. They are very short and don't seem to affect her too much.

Nothing else too exciting going on! We are going to Sesame Street Live in mid-January so we are looking forward to that. Mary has never been to a show like that before so it will be fun to see her reaction. Hopefully it will be a good one!

Thanks so much for checking on us and I promise to get some new pictures up soon. Sometimes I get into a funk about updating, especially when things are stressful. I am feeling better now so I'll try and be more current!

Love, Eileen

Saturday, December 8, 2007 10:54 PM CST

Hello everyone!

I finally have a few minutes to update! Jim took Mary to his parent's house for a sleep-over tonight. Jim gets to see some friends he hasn't seen in a while and Mary gets to have lots of time with Grammy and Grampy Hable. I was able to get some shopping done today with my sister so that was good.

Mary has been doing really well. We recently added B6 to her supplement regime and she went for 2 weeks without us seeing a seizure. I just had to rock the boat though. I thought the B6 was causing her appetite to decrease so I started giving her the B6 every other day. Well, as soon as I did that the seizures came back. Not as severe or often as they were, but it still makes me upset. So, we started back on the B6 every day and I pray that it works again.

She has been doing great at school and at speech. She always suprises us with the things she can do. This week I was watching from the back of her class as she used the augmentative device they have. The teacher asked about the weather and she went to the weather screen all on her own and pushed the "snowing" button. I could not believe it because it was snowing like crazy that day! She got it right all on her own!! She did the same thing in speech therapy. The therapist asked her if it was cold or warm outside. She put her finger over the warm button, but then moved it to cold and touched it. I think we may have a future meterologist on our hands!

Other than that, nothing too new. We are busy getting ready for Christmas. Jim is taking the week off between Christmas and New Years so that will be so nice. I was supposed to go to Palm Springs with my sister this weekend to see my parent's new house but the weather was rainy and cold so we decided to postpone the visit until it is nice out.

I hope everyone stays nice and warm this weekend! Thank you for all of your love, support, and prayers. We appreciate it more than you know.

Love, Eileen

Friday, November 23, 2007 9:30 PM CST

Good Evening!

I hope that everyone had a wonderful Thanksgiving yesterday. We sure did! We went to my parent's house and had a wonderful turkey dinner. My aunt Eileen, Uncle Jim and cousin Jim also came so that was fun. We had 2 Eileens and 3 Jims so it was interesting! Mary had so much fun being the center of attention. She was the only grandchild there since my sister went to her in-laws this year. We had a great time and it was so nice to catch up with everyone.

Today for the first time since high school, I headed out to do some shopping. I went to Kohls and found a great deal on some sweaters. All was good until I saw the line that was wrapped around the store! I stood in line for a good 45 min, but it was well worth it for the money I saved!

Mary is having a sleep over at my parent's house tonight. Jim and I decided that we should tackle our mess of a closet since it is so hard to get that stuff done when Mary is home. I honestly cannot believe the amount of stuff we had in there. I am just so tired of the clutter, especially after spending the weekend at Shannon's house and seeing how beautiful and clutter free her house is! Now I have a goal to work toward. We have several more bags for the Epilepsy Foundation when they come around again!

I'm happy to report that Mary is doing really well lately. We have backed off the dose of Vigabatrin a bit and the seizures have not gotten worse. I thought a week or two ago that it was not helping much and that we were going to take her off of it. Things have seemed to settle down a bit in the past week. She is having 0-2 per day now. We didn't see any yesterday and none today! YEAH!! I went and saw her osteopath, Dr. Wand a week ago. I went to get the results of the urine and blood tests we had taken recently. The tests showed that she is still deficient in a few vitamins and needed an increase in her thyroid med. He said that her urine indicated a condition called Pyroluria. It is basically a deficiency in zinc and vitamin B-6. She was already on zinc but we added the B-6 and a mangenese supplement to treat it. It is apparently easily treatable within a couple of days with these vitamins. Treating this might also help her seizures, so we'll see.

Also, after talking in-depth with her speech therapist, she has been formally diagnosed with verbal apraxia. I kind of knew this was coming, so it wasn't a big suprise. Mary's speech therapist is SO wonderful. She has provided me with so much information on the condition. One of the handouts she gave me described the condition like this:

"Apraxia is a disorder that is more easily defined by what it is not. It is not a muscle disorder. It is not a cognitive disorder. The problem occurs when the brain tries to tell the muscles what to do--somehow that message gets scrambled." It also says that apraxia has much more of an effect on volitional (voluntary) speech than on automatic speech. This means that the more she wants to communicate a particular message, the harder it will be. So if she says something once and I say to her "say it again" it will be very difficult. It also says that this disorder is very frustrating because you will see good progress for a while, then none, then more, etc. So we will have to learn to be patient and work with her. Rebecca (speech therapist) put together a home therapy "workout" for me to do with her each day. It involves about 10-15 min per day including blowing on a horn, oral motor exercises that I do to her mouth, etc. This will hopefully work those mouth muscles to help with her speech. We are also still in the process of obtaining the augmentative device (like a computer w/a touch screen). It is going to take a while, that is just how it goes, but we are so anxious for her to get it. She uses it at school and just loves it!

Anyway, I think that is about it! Enjoy the rest of your weekend and thank you so much for checking in on us.
Love, Eileen

Sunday, November 11, 2007 7:58 PM CST

Good Evening!

I hope you all had a wonderful weekend because I sure did! On Friday I was able to spend the night with all my beautiful 7940 friends. We laughed, cried, ate and drank. It was SO much fun. I don't know what I would do without their love and support. It really means the world to me. I feel so blessed to have become a part of that group.

I got home late Sat afternoon and pretty much needed a nap! Mary and daddy did well while I was gone. Jim took Mary to get her flu shot on Sat morning. Obviously that was traumatic but it needed to be done. Today was a better day for Mary as she got to go to Bloomer to spend the day with Grammy and Grampy Hable. She had a blast!! Her and Grammy blew bubbles and cuddled and laughed togther. I decided to stay home and get some things done after being gone and I can get alot more done when Mary isn't home following me around. I actually cleaned out the cupboard in our bathroom. I am embarrassed at the amount of JUNK I lugged out of there. I had bath products that I hand't touched in 5 years!! YUCK!

Anyway, Mary is doing pretty well as far as the seizures go. Last Wed was a bad day with 5 or so of them, but since then we have only seen ONE tonight!! One seizure in 4 days is pretty good!! I'll take it!! Granted I don't know if she had any at school, but I'm just going to assume she didn't : ) So, we'll keep on with the Vigabatrin and see how she does this week.

Thanks for stopping by and I hope everyone has a good week.
Love, Eileen

Wednesday, November 7, 2007 10:04 PM CST

Happy Anniversary Jimmy!! I can't believe it has been nine years since we started this journey. I love you so much--you are a wonderful husband and father.

Ok, now on to Mary. We started the Vigabatrin last week and unfortunately have not seen any great improvement. We upped the dose today to the max that she can get, so we are hoping that will be the magic number. Today was actually one of the worst days seizure-wise that she has had--she had at least 4. If we don't see a drastic change by this weekend we are probably going to take her off of it. Dr. Frost said that once she is on the max dose we should know within about 4 days if it is going to work. Please pray that it does!

Despite the stupid seizures, she really suprised me at speech today. The therapist took out 2 pictures, one of a monkey and the other a scarf. She asked Mary, "which one is an animal?" and she picked the right one!!! She then had a picture of bananas and a tiger and asked her to find the food, and she got that one right too. So, that perked me up to see her categorizing objects. I also talked to the speech therapist about how slowly her speech is coming and we agreed that the main problem is motor planning. She knows in her head what she wants to say, but just cannot get her mouth to form the words. Somewhere between her brain and her mouth things get jumbled up. That explains why she watches your mouth so closely when you are trying to get her to copy a word. She has been getting really frustrated with it lately and has been saying "no" quite a bit. But, I guess I'd be irritable too if I wanted to tell somebody something but couldn't. There is actually a name for this condition, it is called Apraxia. I don't know a whole lot about it and she hasn't been officially diagnosed or anything,but the description makes sense. We are hoping that the augmentative device will hurry up and get here so that she can communicate better. The speech therapist submitted the report last week describing why it is needed, so now we are at the mercy of the insurance company.

So that is about it. On Friday night I'm going to see my wonderful "Soul Sisters" They are other moms of kids with epilepsy. I know it is going to be a blast and I can't wait to see all of them.

Thanks for checking in on us, we really appreciate it.
Love, Eileen

Tuesday, October 30, 2007 9:09 PM CDT

UPDATE Thurs 4:00PM: We got home at about 1:00 from the EEG. Thankfully she had one seizure while we were there!! I was getting so worried because she hadn't had one all morning and then we got there and of course she was hysterical the whole time they put the electrode's on her head. I thought for sure she would have one then, but she didn't. She was hooked up for about an hour before it happened. Luckily it was one of her typical seizures and it was successfully recorded! She stayed hooked up for a couple more hours and didn't have any more. The tech took all the wires off, which was stressful too and Dr. Frost came in to read the EEG. He said that nothing showed up on the EEG recording during the seizure. This most likely means that the seizure was too deep in the brain to be picked up by the EEG. He said it was definitely a simple partial and that it was NOT generalizing (meaning moving all over the brain) So that was good. He also said that her EEG was "normal" while she wasn't having a seizure except for some static in the area where her brain surgery was. He said that could be because of the "deformity" in the skull and was most likely not seizure activity. So, it is good that she is not having subclinical seizures (none that are being picked up by EEG anyway)

So, the big question now is what to do about these seizures. Dr. Frost does not feel that additional surgery is an option, so that MSI test won't be done. We haven't had success in changing the dose of the current meds that she is on so that isn't an option either. So, I mentioned Vigabatrin as an option since we happen to have access to some now! As most of you know, this is an anti-seizure drug that is not FDA approved. It can have serious vision side-effects. She was on this drug when she was about 10 months old, but we weaned her off of it after her surgery. We are going to try it and see if it works. We should know within about 10 days if it is having an effect. That is all for now-time to get ready for Halloween tonight!!

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Well, we're off tomorrow morning for the EEG. PLEASE pray that she has a seizure or two while we're there. She had 3 today that I saw--not too bad. Despite the seizures she is doing really well with her gains. The teacher wrote a note at school yesterday saying that she identified 13/15 pictures and put 2 words together a couple of times. Those things help keep me going!

Some of you may know that Jim occasionally enjoys writing and last night sat down and wrote up this short essay. I thought you'd enjoy it as much as I did!

***************************************************
Making Lemonade

I often hear that TS stands for This Stinks. While I can see why that is said, I don’t always prescribe to that point of view.

My daughter Mary was diagnosed at five weeks old after having seizures since birth. Not once did I think, “Why us, why her, why me?” Other than wondering if it had been hereditary in our case, I never questioned “what did we do to cause this?” To me, there was no point. What was done is done, there is nothing to do but make the best of it.

Mary is now over five years old and I can say that our life with TSC so far has been good experience. Mary has been slow to develop, both cognitively and physically. Every milestone is a cherished event. Rolling over for the first time, using a sippy cup for the first time, that first High Five, the first time she said “DaDa”, the day of her first steps; all vivid memories that I will never forget. I know all parents say that. I refuse to believe that these events for most were of the magnitude they were for me. I feel grateful that TSC caused me to appreciate these moments so much.

I see how Mary affects everyone she comes in contact with. She greets everyone with a hearty “HI!” Her charm is unmatched. It amazes me how her mere presence makes others happier, like she exudes love that makes you forget about the day to day pressures of life. She puts things in perspective.

For several years, Mary went to a day care center with typical kids. Due to her slow development, she started with kids younger than her and moved up slower than the rest. When I would drop her off, I could tell that she was making those kids better people. These three year olds knew that Mary was special and even though she didn’t talk other than “Hi” and “Baby” and she would occasionally pinch and pull hair, they were always there to help her with whatever she needed. When I was their age, I was afraid of the “retards” because that was what the other kids told me. They went to school in the old building across the playground and we were to stay away from there. Mary’s friends will have a better understanding and care for people of disabilities as they become adolescents and adults. Mary will forever make those little three year olds better people.

I was given the opportunity of/coerced into being the Chair Person of the TS Alliance of the Upper Midwest, several years ago. Through this honor, I have met some of the world’s greatest people, lots of them in the Twin Cities, as well as Colorado, Chicago, Pennsylvania, Tennessee, Maryland, all over the US. Each one of them has their own story that I truly enjoy to be a part of. There is so much strength and love within their biological families, and their extended TSC families. I am inspired by them every time I see each and every one of them. The Alliance provides me with a great sense of accomplishment and community.

There are so many more things that make me a better person than if Mary had not been diagnosed with TSC. I have gained infinite patience for everything. I am learning sign language. I take great joy in riding Merry Go Rounds. My knowledge of human physiology is that of a medical professional. I know how to acquire non-FDA approved pharmaceuticals from several countries. I no longer sweat the small stuff. I no longer notice screaming kids in Target. I appreciate the power of a horseback ride, even though I have never been on a horse. There is great joy in teaching your child to wash their own hair. I now know going poopy in the potty should never be taken for granted. Bad things ultimately make things better in ways you never expected.

Above all, Mary has made me a good Dad. I know that my family-my wife Eileen, my parents and my sisters-are truly proud of me. They give me support in every way that I need it. I am no longer my Sisters’ little brother. I am now someone they can come to for advice, to vent, or just talk about nothing. My parents brag about Mary, Eileen and I and how TSC hasn’t stopped us from being happy. Eileen counts on me to be the point of stability in her life. Living with TSC had matured me in ways that I would never have experienced without it. I am truly a better person because of Mary’s TSC.

So, yeah, TS stinks: only because one lets it. We have been challenged to make the best of an atypical situation. Life has given us Lemons. I choose to make Lemonade.

Friday, October 26, 2007 2:45 PM CDT

Good afternoon!

I hope everyone has had a good week. We have been doing ok here. Mary's infection seems to be pretty much gone, but unfortunately the seizures are still coming. She is having anywhere from 1-4 per day now. I did call and talk to Carol (Dr. Frost's nurse) and we decided that we needed to find out where they are coming from and what type of seizure we are dealing with. So, next Wed (Halloween) we are going for an outpatient EEG at 7:30AM. It will last about 4 hrs. I just PRAY she has a seizure during that time because if she doesn't we will have to go inpatient. That is something I would like to avoid at all costs. But, we'll do what we have to do. Once they get the seizure recorded she will most likely have a test called an MSI, which is basically and MRI and EEG at the same time. She will be sedated for that and does not have to have a seizure during the test for them to get the info that they need. The MSI will tell us exactly where the seizures are coming from and can also tell us where her motor function is. Once all that is done we will decide what the next step will be. That could mean med changes, additional surgery or VNS placement. What we do will depend on what all the testing shows.

Even though her seizures have increased, she has made some great gains in speech this week! Yesterday she said "all done" at least 3 times!! She normally would just say "done". And, at OT yesterday, the therapist said "Ready" and Mary said "Set, Go"!! This is just huge because she never put two words together before. She is so stubborn though, she won't do it on command. When I asked her to say "all done" today she looked at me and just said "NO".

So, we've hit a bit of a rough patch but we'll get through it. This weekend Jim and I are going out to dinner with our wonderful friends Ann and Steve and Mary gets to spend the evening with her cool Auntie Laurie (thanks Laurie!!) We're also going to celebrate Mary's friend Lydia's 5th birthday tomorrow! Happy Birthday Lydia!!!!!!!!!! We love you!!!

Have a great weekend and thanks for your prayers--they mean the world to us.
Love, Eileen

Sunday, October 21, 2007 7:00 PM CDT

Hello!

I hope everyone got to get out and enjoy the beautiful sunshine yesterday! We sure did!! We went to Como Zoo so that Mary could ride the Carousel. She had a blast and it was so nice and warm outside. She got to ride it twice, and in-between rides we went to the conservatory to check out the flowers and the fish. She is so funny because she always bends down and smells the flowers and says "MMM". They also have a fish pond with what I think are carp in it. The fish come right up out of the water with their mouths open looking for food. Mary thought that was hilarious and had so much fun touching them and watching them pop their heads out!

Unfortunately, the seizures have decided to rear their ugly heads. The trigger lately for them is anytime she is laughing, excited or upset. She has had around 4-5 per day since Friday. They last around 15-30 seconds and she gets a smile on her face and her arms get stiff. I did realize on Friday that she has a yeast infection (poor girl!) I was able to get her in to the ped late Fri afternoon and she prescribed a cream that does seem to be helping a little. So, I'm hoping that this increase is due to the infection and once that is gone they will calm down. I'm going to call Dr. Frost's office tomorrow anyway and see if we should do anything. Tonight she had 2 within about 5 min of each other, which kind of scared me. She recovers fine but it is just SO frustrating.

Nothing too exciting planned for the week. I did bring her in last week to get her blood drawn to see where things are at with her vitamin and metal levels, per the osteopath. It will also check her thyroid level and make sure the med is where it is supposed to be. I am really tardy in bringing her in for that so we'll see what those results show. Hopefully we'll find out this week what the results are.

I'll try and post an update on how the seizures are tomorrow. Thanks for stopping by!!

Love, Eileen

Sunday, October 14, 2007 9:45 PM CDT

Hello!

As you can see from the new slideshow, we went to the Pumpkin Patch yesterday! It was a beautiful day and we had a great time. Mary got to feed the animals and LOVED dancing to the "farmer band" which was actually scarecrows that were set to move to music! She is so funny how she just starts dancing any time she hears music she likes!

Today it was rainy so Mary got to go to Menards with Daddy in the morning, and then later in the day we went to the mall. They have an indoor Carousel and she asks every weekend if we can go there. Since it was rainy and cold outside we decided it would be a good way to spend the afternoon! She asks to go by doing her "sign" for it by taking her finger and going in a circle. She gives her ticket to the guy and picks out her own horse! It's a cheap way to make her happy!

This week is MEA, so no school for Mary on Thurs and Fri. She will still have all of her therapies though. Nothing else too exciting planned--luckily no dr appts this week.

Have a great week and thanks for checking in!
Love, Eileen

Thursday, October 11, 2007 9:10 PM CDT

Hello!

Happy Birthday Dad/Grampy!!! We love you!!!!

***New pictures on photo page***

Well, today we made it through Mary's annual eye appt where they have to dilate her eyes. Thank GOD they only dilate them once per year, because this appt was BRUTAL!!!! I tried to prepare her for the appt by telling her that we were going to see Dr. Ballard and that he was going to look in her eyes. She kept pointing to her eyes the whole way there. But, for some reason she was in NO mood to have anyone squirting solution in her eyes and then hang around the clinic for an HOUR waiting to see the dr. Thank goodness I brought her favorite veggie sticks to nibble on! I love the eye doctor, Dr. Ballard, but that clinic is so incredibly slow it is frustrating. In the end, we got good pretty good news. Her eye is still wandering a bit but he said this time he would write the prescription for a bit stronger so it will help compensate for that eye. And, we don't have to do the drops anymore! So, we ordered a new pair of glasses, basically the same as the ones she has now but a size bigger. They should be ready in about 2 weeks. We have to go back in 4 months for a recheck.

The other night she (in her own way) told me that she loved me. She pointed to me and said "MOM" and then did her sign for love. She then reached out and gave me a HUGE hug. It was one of the best moments of my life. She always hugs and kisses me but has never really told me that she loves me. It was so special.

She continues to love school and therapy. She is working on drinking out of a straw and is doing so well at that! We have also started back with Music Therapy, and Mary was SO happy to see Beth again. She loves music so much and I am so glad that we have that going again.

I also have to share what happened to me at ECFE this past Tuesday. Mary goes to school on Tuesdays at her regular time and then I go to the school at 1:15. They integrate the special ed class into the "regular" ECFE class. Anyway, there is this cute little girl who isn't in special ed and her mom told me that Mikayla tells everyone that Mary is her best friend and she couldn't wait to come to class to see Mary. I cannot tell you how that made me feel--I almost cried. To hear that another child feels that way about Mary, especially since she doesn't really interact they way most little girls do just melted my heart. I will never forget that. Then we have the "parenting time" where the moms separate to another room and talk about various issues about raising children. Alot of the time I don't speak up because I feel like some things don't apply to me. There are 2 other special ed parents in the class and they do not say one word about their child's disability/issue--which is totally their choice of course. The first day when we went around and introduced ourselves I decided to just get it out there that Mary has TS and hopefully in the process educate people as to what it is. I gave a VERY short speech about Mary, seizures, brain surgery etc. People seemed very understanding and interested, but I haven't said much since that first day. So, on Tues when we were leaving the parenting facilitator was waiting for me and asked if she could walk me out. She told me that she wanted me to know that the class was every bit mine as it was other peoples and she wanted to know if there was anything she could do to help or change things to make me feel more comfortable. She was afraid that I was upset (which I wasn't) that I wasn't being included in the class. I just cannot say how much it meant to me that she did that. I guess I have kind of just gotten used to being the one whose child is behind the others and that she is ususally not doing what the other kids her age are doing. She also said that she might want, if I'm interested, to do a class about special needs and what it's like being a parent to a special needs child. I told her that I would be up for that. If you would have asked me a few years ago I would NOT have been able to do it. But now I feel more at peace with things. It still hurts every day, but the pain has eased a bit. Anyway, it was just so nice that she was so thoughtful and cares about my experience in the class.

Seizure-wise, things have been ok. I have been seeing in general about 1-2 per day. They seem to come on alot of the time if she gets really excited about something or is laughing really hard. They are really short though, about 10-20 seconds and she bounces back right away. So, I don't think we'll change anything for now.

Ok, enough rambling for one night! Thanks for stopping by--it means the world to us!!!
Love, Eileen

Tuesday, October 2, 2007 7:47 PM CDT

Hello!

Thanks for checking in on our Mary. Things have been busy, but going well. She amazes us each day with new things that she is doing. She really suprises us with what she remembers. For example, two weeks ago we went to visit Grampy and Grammy Hable and Grampy was watching the Packer game. So, this past weekend Jim was watching the game and asked her if she liked the Vikings or the Packers better. She answered "PA!" (which means grandpa). So, we now know that she has taken to the Hable side of the family by being a Packer fan!!!

Last Thursday we went to her annual dentist appt at Gillette. The last time she had her teeth cleaned she was sedated and I was wondering if they were going to have us set that up again this year. But, he had other ideas. They actually cleaned her teeth in the chair! And, they also took x-rays. Now, this sounds good, but the reality is that she screamed at the top of her lungs the ENTIRE time. It was pretty brutal. But, the good news is that her teeth look great and we don't have to go through that for another year. WHEW!!

The seizures have been pretty good. She had one today that I saw. It lasted about 10-15 seconds. Luckily she recovers immediately.

We got our new roof put on last Friday. They did the whole thing in 6 hours! I could not believe it. So it is good that is over with.

We are happy that sweet Kylie is out of the hospital. Please keep her in your prayers that she continues to feel better. Please keep the prayers coming for Mary too!

Thank you so much for your love and support! We couldn't do this alone.

Love, Eileen

Wednesday, September 19, 2007 4:17 PM CDT

Hello!

Thanks so much for stopping in to check on Mary. Things are going well! This past Sat Mary slept over at my parent's house so Jim and I were able to actually go out to dinner! It was so nice to be able to sit and talk and just relax. On Sunday it was my niece Anna's 2nd b-day party. Mary had a great time seeing everyone and especially liked the new baby that Anna got! As soon as it was opened she headed over to check it out--however Anna was not too excited to share her new present. It was kind of fun to see Mary be so interested in something like that. The next day I asked her what Anna got for her birthday and Mary said "baby". I asked her if she wanted a baby like that and she shook her head with a big "YES". So, after telling this to grammy and grampy Mary now has the exact same baby as of yesterday!

This week we've been busy with therapy and school. Mary is getting used to the new teacher and classroom. On Tuesdays they are going to have the spec ed kids join the regular ECFE class and the parents are encouraged to come. So, I went yesterday and it was actually ok. Mary's teacher talked to the parents during parenting time and explained how important it is for the kids to interact. It is not only good for the spec ed kids but also the "typical" kids to learn compassion and caring for those who are different. The other parents seemed pretty receptive to it which was nice.

One new thing is that the therapist who does Mary's feeding therapy is also trained in CranioSacral therapy and she is going to start working this into her sessions for no extra charge. It should help with relaxing her muscles. I did some research on this and it does say that it can also help with seizures--we'll see. I figure that it can't hurt!

We are going to be getting a new roof next week because of storm damage. While I'm glad we're getting it I'm not looking forward to the mess and the noise!

Thanks again for checking on Mary--we appreciate all of your prayers.

Love, Eileen

Monday, September 10, 2007 9:16 PM CDT

Good Evening!

Today was Mary's first day of school! She was so excited to get on the school bus! She didn't hesitate at all--it helped that we have the same bus driver and aide as last year. She will go to school Mon, Tues, Thurs and Fri. We went to her open house last week and met her new teacher and just loved her! I think it will be a good year and just confirmed that we made the right decision to hold her back.

We had a busy weekend. On Sat my cousin got married and it was a fun but long day. Mary did have a blast dancing at the reception though--it was so cute to see her and her cousins out on the dance floor. It was also great to see family that we don't get to see too often. On Sunday we met a wonderful family whose 3 month old son Will was recently diagnosed with TS. They invited us to their house for dinner, along with the Gibbons family. We had a great time, and Will is a beautiful baby. He is doing great without any seizures and we will pray that this does not change. Mary had fun seeing all the kids, but had a hard time keeping her hands off of Kylie and Ava's hair! A bit frustrating for me. I think it is an attention thing to pull other kids hair and hit them in the head. I'm still trying to figure out the best way to handle this. If I yell at her she laughs, so I try and not make a big deal out of it. Hopefully this is something she'll grow out of.

We got her MRI and CT scan results back last week. Good news with the MRI--nothing has changed!! The SEGA has not grown since she was born, and the tubors and post-operative areas are stable. Her kidneys still show the multiple cysts, but they have not grown either, thank goodness!! We were really happy with the results.

The seizures are about the same, fairly minimal--usually 0-2 per day. I guess I'll take it vs. what we have dealt with in the past!

Now that school is in session we have busy weeks full of therapy and school. I think it will be good for her to get back into a routine. She loves therapy and school, so we are so lucky for that.

Thanks for stopping by!!
Love, Eileen

Friday, August 24, 2007 8:57 PM CDT

Update #2: We are home from the MRI and CT Scan. Everything went fine except that it took them 3 times to get the IV in--it was brutal. They ended up finally getting in her foot. I hope to find out the results by the end of the week.

Update Sat 6:00PM: Big news in the Hable house--Mary walked down our stairs holding the railing ALL BY HERSELF!!!!! This is huge!!! YEAH MARY!!

Good Evening!

Thanks for stopping by to check in on us! It is so hard to believe that summer is almost over. Mary will be going back to school the second week of September. As most of you know, she is going to go to Early Childhood for another year. She technically could go to kindergarten, as she turned 5 in June, but we have decided to hold her back a year. I pray that we have made the right decision and haven't messed things up for when she is older. I guess we just had to go with our gut instinct that she needed another year in preschool. Anyway, she will be going 4 days a week, 2.5 hrs each day. She will also continue with OT, PT and Speech twice a week, and Music and Feeding therapy once a week. She will definitely be busy!!

Good news on the feeding front--I think she has her appetite back! We had started her on a mega vitamin called "Super Nu Thera", well I decided to take her off of it to see if it was the problem and it appears to be the culprit!! She is definitely eating much better thank goodness.

We went to see Dr. Frost this past Thursday. It was a really good appointment and he thought she looked great. She was happy to see him and Carol and gave him hugs and smiled and flirted with him!!

We aren't making any adjustments on her meds right now because her seizures are doing so well. She is having 0-2 per day and they are very mild. I actually didn't see any today! YEAH!!! But, if the seizures do get worse again we have 2 different options. If the seizures are coming from an area that is not a place of function, she may be eligible for further brain surgery. If it appears that they are coming from an area we can't touch we would do the VNS. She also has an MRI of the brain and CT scan of her kidneys on Monday. The brain MRI will be looking at her tubers and the SEGA tumor (we have to make sure that this has not grown at all) and the CT scan will look at the cysts on her kidney and make sure that they have not gotten bigger. Please pray for good results for these tests! We have to be there at 6:15 Monday morning--not looking forward to that! So, all in all, it was a good appointment.

Otherwise, she continues to do well, working hard in therapy and having fun this summer! We went to the circus in Bloomer last Monday with Grampy and Grammy Hable! Mary did pretty well for sitting in bleachers for 2 hours. She thought it was SO hilarious when they bounced on the trampolines and swang high up in the air.

Please continue to keep Mary and all of her friends in your prayers. Have a wonderful weekend!

Love, Eileen

Saturday, August 4, 2007 8:51 PM CDT

Hi everyone,

Once again I apologize for the long delay in updates. I have been meaning to do this all week. But, this week has kept us on our toes. So, maybe we'll just start with Monday. Mary went back to Music Therapy on Monday morning. She is seeing her regular therapist's sub at a school in St. Paul. It went great! Mary loved Jackie right away and I could hear her laughing out in the hall.

We then went home to nap and get ready for horseback riding. My parents were nice enough to offer to take her for us. It was a beautiful night and she was SO excited to go. We tell her she gets to go and she just says "neigh" over and over again. My parents got home a bit later than usual and when I opened the car door to get Mary out I knew that something was wrong. My mom started to cry and said that Mary had been thrown off of the horse--but she was fine. I honestly couldn't believe my ears. It was a hot night and they didn't move around too much with the horses and apparently the one she was on was getting restless. Right at the end of the lesson it suddenly bucked up and Mary flew into the air and landed flat on her back. My dad was right there and ran and scooped her up. She started crying but seemed to be fine. She did calm down and walk around. I just know that here was an angel there protecting her--probably her dear friends Drew, Mckenna, and Jess! She does not have one bruise on her body and no injuries at all. Her ped and PT checked her out to make sure. It was a miracle that she didn't get hurt. The woman in charge had Mary go say goodbye to her horse, and she did hit him in the nose and say "bye". She doesn't seem to be too affected by what happened thank goodness and she still says "neigh" all the time like she is excited to go again. We are planning on going back on Monday. There are only 2 sessions left for the summer and we are not doing the fall one, so that will be good.

Tuesday wasn't too exciting, so let's just move onto Wed. We went to the pediatrican in the morning for Mary's 5yr appt and her pre-op for the laser surgery on her face that was to be done on Thurs. As you all know, I had been concerned about her weight and growth, but Dr. Sackett said we did not have to worry at all. She is 40 inches tall and weighs 35 lbs. She has lost a few pounds, but it is nothing to worry about. She is in the 50th percentile for weight and 25th for height. She ended up not having shots due to the surgery. We will have to go back and get those done shortly.

After the doctor appt Mary had her final augmentative communications class. They had a little presentation of the book "Brown Bear, Brown Bear". Each child had a different part to play. Mary was the Red Lion. I have never seen anything so cute! My sister came with to see the show. All the kids were lined up in their little chairs and used their devices to do their part. Unfortunately Mary would not use her device like she was supposed to. The therapist tried to do hand over hand, but she would have none of that! She wasn't crying or upset, but she just wouldn't hit the right spot on the screen. Afterwards they told me that she had done everything right during practice, so I know that she knew what she was supposed to do!

So, then on Wednesday night, as we all know the 35W bridge collapsed. This has affected me so much. It sounds crazy but this road has been such a part of my life since I started college over 15 yrs ago. I took that road home from work for the past 5 yrs and I was just on it this past Sunday. Also, we were planning on taking it to the U of MN for Mary's laser surgery on Thurs morning. Like we have all been saying, it could have been anyone on that bridge. I finally had to stop watching all of the coverage because I would obsess about thinking what I would have done if I had been on it. The whole thing is just heart wrenching.

After what happened, I started panicking on how we were going to get to the U of MN at 7:30AM on Thurs for Mary's laser surgery. I ended up taking 35E to 94 and it wasn't so bad. The surgery went well, but of course she looks horrible. I asked Dr. Lee about other options that wouldn't cause bruising. He said that he could put the laser to a non-bruising setting, but the results aren't as good. Due to her young age, and the fact that she doesn't know that she has purpilish-red bruises all over her face it is the best thing to do. I guess it is just me who is so vain!!

We stayed home and took it easy on Friday and today. She seems to be running a slight fever. We gave her Tylenol. They told us not to give her Motrin as it can affect the blood vessels.

Also, I found out her depekote level is down to 114, which is MUCH better. We have also reduced her Topamax a bit to see if it will help her appetite. We see Dr. Frost at the end of the month so we'll see what he has to say then. She is also scheduled to have a CT of her kidneys and MRI of the brain on 8/27.

Ok, one last thing is that I need to ask for some prayers. Please pray for Caroline, who has been having a rough time for quite a while now. Also, please pray for Maria's brother Andy and Lydia's dad Troy who are probably on their way to Iraq as I write this. We pray that they stay safe and come home without any injuries. Also, please keep the prayers coming for Mary and for all of her little friends who struggle each day. We love you all!!

Love, Eileen

Wednesday, July 18, 2007 8:11 PM CDT

Hello!

Well, the reduction in the Depakote does seem to be helping a bit. She is less shaky and her appetite has improved a little after only a couple of days. I'm going to tell Dr. Frost's office that I would like to get her blood rechecked in a couple of weeks just to make sure everything is back to normal. Luckily we haven't seen an increase in seizures since the Depakote adjustment. Carol thought that it might even help things since she was on too high of a dose.

We got good news today--insurance finally approved the feeding therapy! They approved 1 time per week for 6 months. I have to talk to the therapist this week and figure out when we'll be able to start.

Today was the last day of summer school, so that is kind of sad. But, it will nice to have one less activity to worry about for a while.

Please continue to keep our friend Caroline and her family in your prayers. She continues to struggle with those nasty seizures. If you'd like to visit their website, the address is: www.caringbridge.org/visit/carolineruby

Thanks for checking in!
Love, Eileen

Sunday, July 15, 2007 10:01 PM CDT

UPDATE Mon 5:30PM:
I just got off the phone with Carol at Dr. Frost's office. Mary's Depakote level is 159, which is extremely high. Anything over 100 is considered to be unhealthy, and she said that some people wouldn't even be able to walk with a level that high. We are going to reduce the amount today and hopefully will see an improvement in a couple of days. I'll keep you posted!

Good evening!

Thanks so much for checking in on Mary. Things have been going pretty well. Jim took this past Thurs and Fri off so it was so nice to have some family time! We went to Como Zoo and Mary had a blast riding the Carousel. She doesn't get too excited about the animals, but did think it was hilarious when the polar bear jumped in the pool making a big splash.

Last weekend Mary got to meet her Aunt Rebecca for the first time and I think it was love at first sight for both of them! They had a great time together. Rebecca even came to see Mary on horseback last Monday night, so that was fun. Jim and Rebecca ended up going to the family reunion a week ago Sat. in Bloomer without Mary and I because it was just too hot. It was going to be held outside and with the extreme heat we didn't want to take any risks.

Mary has had a mild tremor for the past week. I have to admit that I didn't really notice it until her teachers and therapists pointed it out. Her hands and legs are shaky and she seems kind of unbalanced. I took her in last Thurs to get her blood levels done. We haven't adjusted any of her seizure meds, so it is a bit strange. The last time she had a tremor it was because the Lamictal was too high in her system. We will find out tomorrow what the result is. I kind of hope that is the reason, because if it isn't then I have no idea what is going on. She is on all of these supplements so I'm hoping that they are not causing any problems. It is so hard to try and figure all of this out.

This is the last week of summer school so we are going to start Music Therapy up again on 7/30. I'm really excited to get back to that because it has been so good for Mary and she loves it. She is also continuing to do her Augmentative Class, which went much better last week. I had the therapist walk her back. She did pretty good until about 15 min before the class ended I could hear "mom, mom, mom, mom..." (but no crying!) so they brought her out and decided that we should end on a good note! They are working on doing a play and all the kids have a part--Mary will be the Red Lion. They are acting out that book "Brown Bear, Brown Bear". At the end of the session they will do it in front of the parents--should be pretty cute! They tell me that she is doing really well with the device and pointing to the correct pictures. So, that made my day!

One other thing is that she has been doing really well with the potty! She has been peeing everyday and pooping almost everyday! I think I'm going to order some training pants and really kick it into gear. She wears pullups now and I don't think she'll ever do it with those on. We'll see--I can't imagine how great it would be if she was actually potty trained!

Please keep our friend Caroline in your prayers. She is in the hospital in Fargo and is having a hard time. I know their family could use lots of extra prayers right now.

Love, Eileen

Tuesday, July 3, 2007 11:19 PM CDT

Good evening!

It is so hard to believe that it is the 4th of July already tomorrow. June has gone by so fast. Only a couple more weeks of summer school left! Mary has been doing well. Her seizures haven't been too bad. We made a slight adjustment on our own a couple of days ago. We had been giving her Depakote 3 capsules in the morning and three at night. We started giving her 2 in the morning, 1 at lunch and then 3 at night. I think that it has definitely helped with the seizures in the afternoon. We'll see--the minute I write that it can all change tomorrow.

Mary has had a busy couple of weeks with therapy. She wasn't too thrilled to go to her Augmentative Communication class last Wed though. I brought her to the room and she just started crying and wouldn't let go of me. She did calm down but only for a little bit and I heard the screaming from the waiting room! We ended early. I think the problem was that I brought her to the room and there were a bunch of therapists and kids in there so it was too much. Next week I will have one of the therapists take her in to see how that goes. The class is at her regular therapy place so it's not like things are strange.

We are still waiting for insurance to make a decision on her feeding therapy. Hopefully we'll hear from them soon!

Tomorrow we are going to relax in the morning and then head to my parent' house in the afternoon for a cook-out. They are going to set up their pool, so Mary will be SO happy about that. Then on Friday night, Jim's sister Rebecca will be coming into town for a family reunion next weekend. Jim is going to pick her up at the airport and she will spend Friday night here. Rebecca lives in Turkey teaching English and has not been home in quite a long time. She has not yet met Mary in person so we are so very excited for them to get acquainted.

Please keep the Olson Family in your prayers. They lost their sweet McKenna last year on 7/5. They need lots of extra prayers right now. Also, please continue to pray for the family of Jess Marie. They could also use lots of prayers to help them cope with the loss of their beautiful daughter. We know that both of these babies are up in heaven with Jesus, but we sure miss them down here. Also, Mary's dear friend Kylie Jo has been having an increase in her seizures. Please pray for them to stop!

Thanks for checking in on Mary and for all of your prayers. Have a happy and safe 4th!
Love, Eileen

Saturday, June 23, 2007 9:35 PM CDT

HAPPY 5TH BIRTHDAY SWEET MARY!!!!

Today we were blessed to celebrate Mary's 5th birthday! We had a super fun party and she was able to be surrounded by all of her family and friends that love her so much. Thank you so much to everyone who celebrated today! She had a blast playing with all of her friends and cousins and jumping in the huge pink barbie "super jump"!

Mary is so special to so many people and we just love her so much. It is hard in some ways because she isn't where a typical 5 year old should be developmentally. I try so hard to not let that bring me down. But, she continues to make great gains in all areas and is such a joy to be around! WE LOVE YOU MARY!!!!!

Unfortunately the party ended tonight when Jim had to go to Sweden for work. He will be back on Wed, so it's not too long, but just a bummer that he had to leave the day of Mary's party. Tomorrow we are off to my twin cousin's high school graduation party and then back to the grind on Monday!

Thanks for checking in on our Mary!! Oh, I forgot to mention that when you ask her how old she is she will hold up all five fingers!! It is so cute!

Love, Eileen

Monday, June 18, 2007 5:18 PM CDT

Today I am asking you continue to pray for sweet Jess and her family. I cannot imagine the enormous amount of grief this family is going through. In this time of great sadness, they have selflessly decided to donate their baby girl's organs so that other children can live. We love you Jess and we know you are in heaven sitting in the arms of Jesus.

Love, Eileen

www.caringbridge.org/nd/jessmarie

Saturday, June 16, 2007 7:36 PM CDT

Hello!

Well, once again I apologize for the delay between updates. Mary has been doing well the past few weeks. Her seizures had slightly increased--one day she had as many as 5. I had run out of one of her supplements, L-Carnosine and I think that may have been the reason for the increase. Now that we have her back on it they are better. I had kind of been thinking that it wasn't doing much so when I ran out I was going to let it go. Apparently it does make a difference!

We have started our "summer schedule" last week. We definitely won't be slowing down much! Mary will have summer school twice a week until the end of July for 3 hrs each time. She will also continue with speech, PT, OT and horse back riding. We are taking a break from Music Therapy until the end of July. It was just too much with summer school, trying to squeeze everything in. Her therapist is on maternity leave and the sub was kind of limited with her times. She will start seeing the sub in July and then we'll go back to Beth when she returns in October.

In addition to all of those, she is going to be taking an Augemntative Communication class where she gets PT and Speech. We are working on getting an Augmentative Communication device for Mary. This is basically a small computer to help her to communicate. It is pretty high tech--and EXPENSIVE!! The model that her speech therapist wants to get her costs $7000!! It is something that she can use now and it will grow with her. We just feel that she has so much to say and knows so much more than she can say on her own. This device will definitely NOT take the place of working on her own speech, but will actually enhance that. Her speech therapist is working on a report to send to our insurance company to explain why this is needed. So, the class she will take will be a group of about 6 other kids who also use those devices. They will work on talking to each other and then at the end of the session they are planning on doing a little play! It should be rezlly good for her, and hopefully she will be motivated to use the device when she sees the other kids doing it.

The other new therapy we are starting is feeding. Mary is a fairly good eater, but will only eat certain kinds of food. Right now, she is obsessed with goldfish crackers--oh and they have to be the "chedder burst" kind. She refuses to eat any fresh fruit except a banana and will not eat foods that are lots of little things, like peas, corn. So, we had an OT who specializes in feeding evalutate her a week or so ago, and she thought she could help Mary get past some of these things. She uses a technique called SOS (Sequential Oral Sensory). I'm not exactly clear on what that will entail, but at this point I'm ready to try anything. We have also ordered a new chair for Mary for the dinner table. It is called the "Tripp Trapp Chair". This has a support for her feet as well as her back. Right now her feet dangle from the chair and I was unaware that this is not good! We have also ordered a seat and back cushion to support her as well. I guess by having her body well supported it will help her work on eating better. We are waiting for insurance to approve this therapy so as soon as that is done we can get started!

Mary has been having a blast this past week playing the pool and swinging in her swing--she just loves being outside! We still have to watch her closely in the sun because she still doesn't sweat (due to Topamax) and we have to watch her face. The little bumps on her face get worse in the heat and sun. They look like freckles now, but I don't want them to get any worse. She will have another laser surgery on 8/2 and then again next Feb.

Yesterday we had quite a scare here! We heard Mary crying in her room and Jim went in to find her laying on the floor. Her foot had gotten caught in the blanket and she fell out of her bed! She was crying really hard and didn't calm down like she normally would. It seemed like she had hurt her right arm. We went down to Children's ER and they took 5 x-rays. Thank goodness it was not broken. They said she may have a tiny little thing on her wrist, but it was probably nothing. I cannot tell you how relieved I was. We both went home and slept for 2 hours!!

I hope you all have a wonderful Father's Day! We are going to Bloomer tomorrow to see the Hables. Mary got to spend today with Grandpa Tom and Grandma Kate. She got to go in the pool and play with all of grampy's special toys.

Please pray for Mary's friend Jess. She was life-flighted from Fargo to Children's hospital last night. Her website is listed above. She is such a sweetie and we are praying that she gets better very soon.

Thanks for checking in on our Mary!!
Love, Eileen

Sunday, May 20, 2007 9:37 PM CDT

***NEW PHOTOS***

Hello!

Thanks so much for stopping by to check on Mary! Things have been going pretty well. First of all, I want to thank everyone who came out for the TS Walk last week!! I cannot thank you all enough for your support, time and donations. We would not be able to get through this without the love of our family and friends! Team Mary was tied for first place for the amount of donations--ours came in at about $6700!!! The total for the whole walk was over $53,000!!! That is amazing!! Thank you SO much to everyone!!!

Mary has been doing good. She has been fighting a cold for the past 2 weeks or so. Her poor nose gets so stuffed up and tonight when I tried to clean it she got a bad bloody nose. I felt so bad for her! It did just stop on it's own and I put her in the bath and she forgot all about it!

Seizure-wise things have been ok. Yesterday she had 2 that I saw and maybe just one today. I try to keep track, but then I forget the number and the days blend together. Basically, she is having 0-2 per day. She has been doing well with all of the supplements from Dr. Wand. I started the B-12 shots last week. I was so worried about doing this. But, with wonderful advice from my good friend Kim, who is an RN, I actually did it on my own when she was asleep! And, she didn't wake up!!! I put numbing cream on her little behind and it does the trick! I do think she has been a tad bit more energetic since we started them. She still gets more tired than your average 4 year old, but it is hard to tell if that is from the seizure meds, or all of the school and therapy she goes to every day!! We will be having her blood levels tested again in a couple of weeks so we can see where things are at. I am especially interested to see how her thyroid is doing since we started the meds.

She continues to absolutely LOVE horseback riding. She gives the horse a hug and pats it's mane. They have also had her trotting a bit, and she thinks that is so hilarious. She totally bounces up and down and has a great time.

More great news I have to share is that she continues to try and say new words. Some new ones this past week are whoa, sit, set, go (as in ready, set, go), more, duck. She really needs to look at your mouth and listen carefully in order to repeat the word you are trying to get her to say. Alot of times she just blurts out "bah" when you ask her to say a word. It takes so much concentration for her to get those words out. When she does do it, she is so proud of herself!! It is so cute!!

Have a great week!!
Love, Eileen

Sunday, May 13, 2007 10:24 PM CDT

Happy Mother's Day!!

I want to dedicate this essay to all of the wonderful mothers of kids with special needs. You probably have already read it, but it is always worth seeing again.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Saturday, May 5, 2007 9:39 PM CDT

Hello everyone!

Once again, things have been really busy around here! I don't know why I thought that when I quit my job things would calm down--in fact they're almost busier! But, that is ok. Mary has been doing pretty well. We weren't able to go horseback riding last Monday because of the rain, so hopefully we'll have nicer weather this week.

This week I finally got the results of all the tests from the osteopath that I took Mary to at the end of March. They had taken a ton of blood and looked at stool and urine samples. So, this past Wed I went to his office to get all the information. The results indicated alot of things. To begin with, she has hypothyroidism, which means that her thyroid level is low. This wasn't too much of a suprise since I have the same thing, as does my mom and both of my aunts! This also could explain her constant fatigue. We started her on a natural thyroid replacement--it is called armour thyroid. This is different than the synthetic version I take, which is Synthroid. Apparently this type works a bit differently--I honestly don't understand it all, I just hope that it helps! We started giving the med to her last week, and so far I haven't seen a huge difference in her fatigue, but hopefully things will get better soon.

The next thing he found was that she has a malabsorption issue. So, her body is deficient in a few crucial vitamins--folic acid, riboflavin, zinc, and B12. We have started giving her supplements for all of these except the B12. Apparently Zinc can help alot with mood and anxiety which is a huge issue for Mary. The B12 is unfortunately to be given in the form of an injection. I'm a bit nervous about this! I haven't gotten them yet, but you give them in the rear-end once every 3rd day. This should help with her concentration, energy level and speech from what I understand.

The last problem is that she has too much of the bad bacteria in her stomach. The remedy for that is to give a supplement of good bacteria. We started giving her a product called Ultra Flora.

Oh, and one other thing he mentioned was that we may want to consider taking her to an allergy specialist in LaCrosse, WI. He felt that the increase in her seizures the past few weeks could be allergy related.

This doctor has just been amazing. I really liked it when he said that we aren't just going to blame all of her issues on TS--we're going to look at the big picture. If anyone is interested, the website for his clinic is: http://www.midwestwellness.com/. I would like to go to him myself once we get Mary figured out!

So, as you can imagine all of the supplements combined with her seizure meds is ALOT! Jim went out and bought this gigantic pill organizer--it is just crazy. The good thing is she doesn't seem to mind too much, since she is so used to taking pills.

We also went to see the eye doctor yesterday and got some good news! We had started using drops in her eye a couple of months ago to help her right eye that had been wandering outward. Well, it has definitely been helping! Both the technician and the doctor could tell a difference. She is still favoring her left eye, but the right one is much better. We are going to continue with the drops and go back for another check in 3 months. Oh, and the other big news about this appt is that Mary didn't cry at all!! This is absolutely HUGE progress for her. She will normally scream at the top of her lungs when anyone tries to look in her eyes there, and this time she was totally fine with it. I honestly could not believe it. Dr. Ballard was even suprised! Maybe it's the zinc working already!!

After our appt yesterday we went to Mary's friend Daisy's house! We met Daisy and her mom Diann where Mary gets OT and Diann has become such a wonderful friend. I am just so grateful to have met her. Mary and Daisy just love each other so we thought it would be fun to get the girls together, plus they live about 5 min from the eye doctor. Mary was so excited to see Daisy and her sister Mina! Daisy gave Mary such a cool toy-remember those horses on springs for kids to ride? Well Daisy had one when she was little and now is too big to ride it, so she gave it to Mary! It was so nice and generous of them to give it to us! Mary has already ridden it a ton and says "neigh" when she sees it or wants to ride it. It was also a huge hit with cousin Tommy!

The other thing we have started up again with Mary is going to see the chiropractor. Mary's neck has always been tight on the right side, but lately it has been really bad. I bring her to a holistic chiropractor that I have known for a few years now. She doesn't do any adjustments, just touches pressure points. Last week when we went she said that Mary's spine was very tight. Apparently your vertebrae are supposed to move independently, but Mary's are not doing that. So, we are going to keep working on her spine and when that loosens up hopefully her neck will improve as well.

So, that is about it!! We hope to see everyone at the walk next Saturday! Please pray for nice weather!!! Thanks so much for checking in on our Mary!
Love, Eileen

Wednesday, April 25, 2007 7:58 PM CDT

Hi everyone,

I am so sorry for the long delay in-between updates. It has been hectic here and I kept putting off doing the update. I am still in the process of getting used to being a stay at home mom. I'm working on getting into a new routine. Mary's schedule is different almost everyday so that makes it hard too.

Mary is doing well. We got the insurance all worked out and she is now going to speech and PT twice a week for an hour each time. So far it has been going really well and she loves both of the therapists. She started therapeutic horseback riding this past Monday night and absolutely LOVED it!! It was even more fun because her good friend Lydia was there too! It was the first time she had ever been on a horse and you never would have known it! We are so excited that she is able to do this.

Her schedule is quite busy, so things are never boring: She goes to school Mon, Tues, Thurs and Fri from 8:30-11:00. Monday nights we have horseback riding, Tues and Thurs afternoons we have OT for an hour, Music Therapy is on Tuesdays following OT. Speech and PT are on Wed and Fridays for 2 hours! Sometimes I'll just freeze and wonder, are we where we're supposed to be??

Last week we had her IEP meeting. It went fine--really no suprises. I always hate going to those meetings. We are really lucky because our school district has been great, but it is always so hard to hear some of what they have to say. Since Mary is old enough to go to kindergarten next year, they do testing to see where she is at. The results were not what I wanted to hear, and I have been feeling kind of down about things since then. They have to put her into a category so that they know what she'll need when she starts kindergarten. They have determined that she is developmentally cognitively delayed. Of course I already knew this, but it makes it worse to see it in writing. The good thing is, she is continuing to progress everyday. I am so proud of her.

As far as the seizures go, it has been up and down. This past weekend we went to Bloomer, WI to visit Jim's parents. Mary was SO happy to see them! But, during lunch she had a seizure that lasted approx. 2 min. It was her usual goofey smile, dilated eye one. She had a couple more that day but the others weren't as long. It is SO frustrating. I called and talked to Carol today at Dr. Frost's office. We are going to up her Lamictal a bit and she is going to have Dr. Frost look over all of her medical records, specifically the EEG's and what was removed when her surgery was done. Carol thought that further surgery may be an option. I was under the impression that when she had her surgery done they had taken all that they could, but I might be wrong. So, we'll see. I have a feeling that she is not a candidate for any more surgery, but it will be interesting to see what Dr. Frost has to say after looking over everything.

The walk is coming up on May 12th!! We would love to have anyone who wants to come to join us! Just give us a call and let us know if you'd like to come. Please pray for nice weather! Our great friend Steve's jazz band, Yo Jimbo! is playing again this year, so even if you don't walk you can listen to some FABULOUS jazz music! Thank you so much to Steve and all of the band! We are so grateful for your time!!

Thanks so much for stopping by!
Love, Eileen

Tuesday, April 10, 2007 8:59 PM CDT

***NEW PHOTOS***

Good evening!
I hope that everyone had a nice Easter weekend! Ours was busy, but fun. Jim sang at church Thurs-Sat, so I was on my own alot. He sang in a small group for all of the holy week masses. We actually went to church as a family on Sunday. I think this is the first time we've brought Mary to church with us since she was a baby! She did pretty well, but did say a few loud "hi's" so Jim had to take her out. She loved the music and the bells and even danced to them! It was really cute. After church we went to my parent's house. My sister and her family were there along with my Dad's sister, her husband and their 2 boys. It was nice because we don't get to see them very often.

Last week I brought Mary in for her speech and PT evaluations. I was really impressed by the facility and both of the therapists. I knew in advance that the results weren't going to be good for either, but especially the speech--and I was right. I felt kind of depressed about it, but glad that we are getting her the extra help now. We will hopefully start both of these therapies right away, pending our insurance. We switched insurance when Jim got his new job, and the way things were worded was kind of deceiving. They will only pay for therapies like speech, PT and OT if it is being done to "restore" function that has been lost. They have already denied all of the OT claims. But, we do have an argument that these therapies are restorative. After her surgery she couldn't move the right side of her body and she hasn't fully recovered from that, in fact she has a LONG way to go in getting functional use of her right hand again. So, we may have to ask Dr. Frost to write a letter to them to clarify this. I just hope this doesn't delay the start of therapy too long.

On a good note, she has been really trying recently to say new words. Today at OT, she said what sounded very similar to step, open, cracker! She also tried to say the therapists name, Kaley, by doing the "CH" sound. It seems like she is really interested in trying to say words, which is something she never wanted to do in the past.

We have started to slowly wean her off of dairy products. She hasn't had an milk in a couple of weeks now. I bought soy milk in 2 different flavors and also bought this "almond breeze" stuff, which is dairy and gluten free. I can get away with making her oatmeal with it, but she refuses to drink it. I tried the almond breeze tonight and she took one tiny swallow and gave it back to me and said "no". So, her only beverage that she will drink now is water. She refuses all types of juice, so I guess variety isn't that important to her!

It is hard to tell if we are seeing good results with the wean of dairy. I guess the increase in wanting to talk could be an effect of it. Her seizures have also been pretty minimal. I think we only saw a couple this weekend. I cannot wait to get all the test results back from the osteopath, Dr. Wand. I'm kind of nervous that he'll recommend the gluten free diet. It just seems SO overwhelming. But, if we have to do it, we'll do it.

We have her IEP meeting next week. She will for sure go to summer school for 6 weeks, 2 days per week. Next year she will go to school 4 days a week. I just got an email from her teacher, and they are recommending that she do 3 days of small group special ed, and then one day in an integrated ECFE class with "typical" 3 and 4 yr olds. We will get more details of this after the meeting next week.

So, I guess that is about it! Thanks for stopping by to check in on Mary!!

Love, Eileen

Tuesday, April 3, 2007 8:29 PM CDT

Hello!

Well, as of this Monday I am officially a stay-at-home mom! I honestly don't think it has really sunk in yet. Since my last day of work, which was last Wed, things have been pretty hectic. This past Friday I brought Mary to see an osteopath that was recommended to me by my friend Kim, whose son Nicholas is in Mary's class at school. His office was way out in Bloomington, so it was a hike, but once I got there I was so happy we went. I don't think any doctor we have had has EVER been so thorough. It was amazing. We have to go get her blood drawn and bring in 2 stool and urine samples, but he is going to test for TONS of things. For example, some of you may know that my mom has Celiac Disease, which is a hereditary condition, and many people with it don't even have any symptoms. He is going to test for that, check her thyroid level, and check lead, mercury, and other lots of other things. I am so excited to get all this checked out. He also suggested that we wean her off of all dairy products for 2 weeks to see if we see any improvements. I guess that many kids with developmental issues have problems digesting dairy and gluten. So, the next step may be to take her off of all glutens, which will be quite a challenge since she is completely addicted to goldfish crackers! I have to get her in to get the blood taken and give them the samples and then I'll go back and meet with the doctor to go over what the plan will be.

Today we had Music Therapy and OT, and tomorrow we go to get her evaluated for PT and Speech therapy. I am really excited to get in her to both of those, especially speech. She has been really trying to say new words. We've been saying to her "say it with your mouth" and she does get out at least part of the word. She seems to get out either the first part or the last part, depending on the word. It will be great to get her into private speech to really work on this.

Her seizures are about the same. We had increased the Topamax, but it was causing her to have balance problems and tremors, so I reduced it back to where it was. I really need to call them to see what to do next. Knock on wood they haven't been too bad, but she is still probably having at least 1-2 per day, that I see--who knows how many she has that I don't see!

Her face is healing nicely from the laser surgery. It is still kind of "ruddy" looking but getting better each day. I guess you don't see the true effects of the surgery until about 6 weeks post-op.

Please keep our friend Kylie in your prayers. She is back in the hospital because of her seizures. Please pray they make a plan and figure out how to help this sweet girl. Also, Caroline is finally on her way home today! She has spent the last 62 days in the hospital. Please pray they arrive home safely and can stay there now.

I'll update on how the PT and Speech evals go tomorrow. Thanks for checkin in on Mary!

Love, Eileen

Friday, March 23, 2007 10:16 PM CDT

Good Evening!

Thank goodness the weekend is here!

Mary has had a pretty good week. We were outside today enjoying the wonderful weather! Tommy and Anna came over and we played on the swing set, rode in the wagon and pushed the toy shopping cart down the driveway (now that is fun!) I also gave Mary a ride in her fancy new stroller. She was in heaven. It is like those baby jogger strollers, just a bit bigger and she basically is laying down and watching the world go by as I push her. We also got her a new swing which she is loving! It is a plastic swing with a high back for her to sit in. Much easier than trying to get her in and out of the baby swing. She has also gotten very interested in riding her trike but is having a hard time keeping her feet on the pedals. So, we also ordered a pedal adaptor that will keep her feet on the pedals with velcro. That should arrive Monday and I can't wait to get it! She gets so frustrated when her feet come off the pedals, so hopefully once we get those she will actually be able to ride it around our circle.

As far as the seizures go, today really wasn't the greatest day. She had one that was a bit more intense with both eyes closing. I think it lasted close to a minute. She may have had a couple of other ones, but I honestly wasn't positive that they were actually seizures. We had increased her Topamax hoping that would help and it has been over a week now. So, I guess I'll be calling them on Monday to find out what else we can do. Dr. Frost had mentioned that she wasn't on the max dose of Depakote so that is one that could be adjusted.

She has also seemed more tired lately and I'm going to mention that to Dr. Frost as well. Last night she went to bed at 6:15 and slept until 6:00AM. She was SO crabby at dinner that she barely ate. Today she has seemed more out of it too. The school bus picks her up at 8:00 and she gets home at about 11:15. She was just waking up when the bus pulled up in front of our house! She has always needed alot of sleep, but this just seems excessive. I don't know if it is due to the Topamax or not, because we haven't changed the morning dose, just the evening one. Who knows.

Next Wed. is my last day of work! I honestly can't believe it. I don't think it will hit me until I walk out of there. I just know in my heart that it is the right thing to do. Mary just has to come first before anything else.

Please keep our friends Caroline and Zoey in your prayers. Caroline is still in the hospital and Zoey has had some seizures that we are praying stop right away.

Thanks for checking on us!
Love, Eileen

Friday, March 16, 2007 6:36 PM CDT

Good Evening!

Well, it has been a busy week for Mary. We saw Dr. Frost on Wed and it was a good appointment. He thought she looked great. We decided to increase her Topamax by 25mg in the evening to see if that would help with the remaining seizures. I think it's too early to tell if it is helping. Yesterday I saw one, and today just one as well.

Today she had her 3rd round of laser surgery. It went really well and it seems like he had to do less area this time. The whole procedure, once she was out took only 3 minutes!! Her face has the ugly bruising on it, but as we know from the past, it will go away in a week or so. Her eyes are pretty swollen, but that should get better in the next 24 hours. She also has a bigger angio on her eyelid that they treated as well. He said that he can keep it's size under control with the laser for the next several years, so it doesn't need to be cut out anytime soon, which was a relief.

So, we will take it easy this weekend so she can rest and recover from the procedure today. She was pretty wobbly afterward because they gave her tylenol w/codine and it kind of knocked her out. She is now camped out on the couch with her baby watching Elmo for the 10th time today!!

Thanks for checking on us! Have a great weekend!
Love, Eileen

Friday, March 9, 2007 10:12 PM CST

Good Evening!

Jim has arrived home safe and sound from DC! His trip went really well. He had several appts with congress people on Wed. He ended up meeting with aids from each of the offices. Apparently the King of Jordan was speaking to Congress so that's where everyone was. But, the cool thing is that he was on the same plane coming home as Amy Klobucher and Norm Coleman! He did talk to each of them briefly and told them that he had met with their offices on Wed and told them a bit about TS. They were both really receptive, but unfortunately there wasn't time to really get into too much with them.

I called Dr. Ballard this week to talk to him about getting the eye drops for Mary. He is such a nice doctor. He called me back and did call the prescription in. The drops will blur the vision of her left eye forcing her to use the right one. She has a condition called Strabismus. This means that one eye does not point in the same direction as the other one. So, we will put one drop in her left eye for two consecutive days per week. Hopefully this helps the problem. It just makes me cringe when I look at her and her right eye is way out to the side.

Mary is going to go visit Grandma Judy and Grandpa Bill tomorrow and boy is she excited! We told her she was going and she kept talking about it all night. Jim taught her that G. Bill has a mustache. So, now she points above your lip to show that she is talking about a mustache. She really amazes me at how much she understands and remembers. Now, if we could only get all of that out with speech!

Thank you all for praying for Mary's friend Caroline--you should check her site because nothing short of a miracle has happened! She is talking and interacting and it is amazing!

That is all for now! Thanks for checking in!
Love, Eileen

Tuesday, March 6, 2007 9:23 PM CST

Good Evening!

Well, there is big news in the Hable household--I quit my job of nine years last week to stay home with Mary. I will work until the end of March to allow them to get things in place before I leave. This has been a very difficult decision. Going to work has been both good and bad. It has allowed me to get out and do my "own" thing, away from therapies and doctor appts. But, it has also kept me away from Mary 2 days a week and we have been unable to do additional therapies on those days and other activities to help her development. Being in daycare has been good for Mary--she loves the other kids and it is great that she has spent time with "typical" kids her age. However, we have decided that it is now the right time for me to stay home.

Luckily Jim's job has been going really well so we are very blessed with that. We have also gotten a grant from the county which has helped tremendously to pay for music therapy and other expenses.

So, I have wasted no time in starting to plan what we will do in April once I am done working. Mary will start going to school on Mondays, so now she will be going 4 days per week. I'm very excited about that because she loves going there and it is one more day for them to work with her on all of her skills. I have also scheduled an evaluation at a therapy place to get started on private speech and physical therapy. She will also continue to get private OT. And, I am also signing her up for Therapeutic Horseback riding. I am SO excited about that one!! Mary's friend Lydia is going to go to. It is held at the Washington County Fairgrounds. I really think she is going to love it! That starts April 25th.

I was so nervous about quitting, but my boss was really nice about it all. I really feel like I've had this huge weight lifted off of my shoulders. I already feel happier and excited about the new things that Mary can start doing.

She has actually been doing pretty well. The seizures have been ok--she has had a few that can last up to a minute long. They are simple partials so she does talk throughout them but I just wonder how that is affecting her development. We went to see Dr. Ballard last week (eye doctor) because of her "wandering" eye. He said that she needs to patch it for 2 hrs per day. So, I buy this patch thing that fits over her glasses, and let me just say that lasted on her face for about 2 seconds!! She will absolutely NOT keep it on. Another option is those sticky patches that you put right over the eye and they are kind of like band-aids. That will definitely not pan out for us. Mary freaks out if we take even the tiniest band aid off her arm after a blood draw. So, the last option is to get drops for her eye. What that will do is dilate the good eye forcing her to use the weaker one. He wanted us to try the patching first because the drops are a medication that get into the blood stream. I was totally fine with that, obviously we don't need to be giving her any more meds! But, the drops seem to be our only option. I need to call him this week and ask him to call them in for us.

Jim is in DC this week marching on Capitol Hill to ask for funding for TS research. There are parents from all over the country there now doing the same thing. He is so excited to be there and to see all of our TS friends!

That's all for now! Thank you for checking in on Mary!!
Lots of love,
Eileen

p.s please continue to keep Mary's friend Caroline in your prayers. She has been transferred to the Mayo Clinic and we are praying that they can give her parents some answers. Her website address is below.

Thursday, March 1, 2007 1:26 PM CST

Hi everyone,

I need some extra prayers today for two of Mary's friends please! Little Zoey has been sick for a couple of days and now they have determined that she has fluid on her brain that needs to be drained today. Please pray for safe travel to Children's hospital for them as they live in Somerset, WI and that is quite a drive on these very snowy roads.

Also, please continue to pray for Caroline. She is still hospitalized and very sick. They are waiting for the weather to clear so that they can transfer her to the Mayo Clinic.

Their websites are: www.caringbridge.org/visit/zoeybemis and www.caringbridge.org/visit/carolineruby

Stay safe in the snow!

Lots of love,
Eileen

Monday, February 26, 2007 8:21 PM CST

All I can say is WOW!!! This past weekend I went to Alexandria with a group of wonderful women. All of these moms have kiddos with special needs. It was such an amazing weekend, I cannot even put it into words. I feel so blessed to have met each and every one of them. I had a wonderful massage, and we played games and laughed--we laughed SO hard and it felt great. I'm just getting choked up thinking about it all! I can't wait until we can all get together again! I love you guys!!!

Mary has been doing pretty good. The seizures have been fairly stable. She has had a few this past week--some last 5 seconds and others are lasting up to 1 minute. We'll have to talk to Dr. Frost about what to do about these. But, she recovers pretty quick so that is good. This is such a busy month full of doctor appts. We see Dr. Ballard this Thurs for her "wandering eye" and then on 3/14 we see Dr. Frost and then on 3/16 she has another round of laser surgery. Definitely NOT looking forward to that.

Daycare continues to be a bit rough. She just has such a hard time with the big group. I think their biggest complaint is the fact that she is loud during nap time. It is really frustrating. I just get this really bad feeling when I pick her up. I don't think they are mean to her or anything, but it is obvious to me that she is a burden. They of course don't say that but I can tell. It is really painful to me. I walk out of there feeling really depressed. So, we are working on other options--I'll let you know when we get things figured out.

One exciting thing is we got a new "jogger" stroller for Mary. It looks like those baby jogger strollers but is bigger. I kind of feel like it is too big--it can hold people up to 100 lbs. I told Jim that I thought it kind of looked like a wheelchair but he didn't think so.

Anyway, thanks so much for checking in on Mary!

Love, Eileen

Sunday, February 4, 2007 8:31 PM CST

Good evening!

Well, I hope that everyone is staying warm this weekend! Brrr--I just checked and our thermometer said -13!! Hopefully it will warm up this week. We have had a pretty quiet weekend, which has been nice. Jim arrived home safe and sound from Sweden on Friday afternoon. He was pretty tired, but was still willing to drive my parents to the airport at 5:00AM Sat morning! What a guy! Kate and Tom are now in Palm Springs, CA where, I might add, it was 84 degrees today!

On Sat we took care of our neighbor's Golden Retriever for the day. I had her come over to our house and Mary was in heaven! Ginger is such a sweet dog and didn't mind at all having a little girl pulling her hair and patting her just a tad too hard! Our 2 cats on the other hand weren't too thrilled to have her here!

Today we had Jim's parents over for lunch and Mary was SO happy to see them. I told her yesterday that they were coming and she kept asking for "ma" and "pa" all day. She would just squeal when we would tell her they were coming. She likes to lay in her bed with Grammy and play so she got to do that and sit on Grandpa's lap and read books.

Healthwise, things have been going pretty well for Mary! (knock on wood!!) Her seizures have been really minimal--one every other day or so. It does seem that when she has one they are a bit more intense than they used to be and last longer. They seem to come on when she is tired and/or excited. We see Dr. Frost on 3/14 so I guess we can talk about any med changes at that time. I'm ok with the ones she is having right now just so they don't get any worse.

The other issue she is having right now is with her right eye. We had noticed in the past that it would wander to the rt. When we last saw the eye dr. he said that her prescription had changed for her glasses and hopefully it would improve when she got new ones. Well, that was in November and unfortunately the eye wandering seems to be getting worse. It really bothers me because it is so obvious. We weren't supposed to go back and see him until May, but I called and got her in on March 1st. He is really hard to get into so I was happy to take that appt. I think she'll either need to get an eye patch put on her glasses, or they have another option of putting drops in the good eye to make it dilate, which would force her to focus with the rt one. We'll see what he says. We also have round 3 of laser surgery on 3/16, so that month isn't going to be so hot. We're doing the laser surgery every 6 months and the next one is scheduled for August. At least it will be before school starts next year.

She continues with all her therapies--they are working on Yoga in OT!! That just cracks me up. They are working on positions like "the dog", "lay down doll" and "the candle". The goal is for her to hold the position for 3 seconds!

Daycare is getting to be a bit of a challenge. She is now in a class of 3-4 yr olds and there is a ratio of about 12 kids to 2 teachers. Mary is having a hard time with all the action in the class and has become kind of loud. As many of you know, she loves to say "HI", well this is getting to be a problem. She is yelling HI very loudly and during times when she shouldn't--nap time or when the teacher is reading a book. I've been getting kind of stressed about it. I asked her Special Ed teacher to call the teachers at the daycare and see if she could give them some ideas to distract her when she does it. Dawn (sp ed teacher) suggested giving her a book to look at while they are reading or if possible removing her from the group. The whole thing is just so frustrating and painful. I just want her to be like the other kids. I pray that this is just a phase that she is going through and it will stop. I'll keep you updated on what happens with that.

Please continue to keep our friends Caroline and Kylie in your prayers. Their websites are: www.carinbridge.org/visit/carolineruby and www.carinbridge.org/mn/kylie

Last week we went to visit Elmo at the Epilepsy unit! He was there to visit Kylie, but we got to go and see him too! Mary was thrilled to see him-but from a distance. We also met another wonderful mom there as well. Her name is Nena and her little boy's name is Reese (hopefully I spelled that right!) They were here from Superior, WI and little Reese is starting the Keto diet, which is very tough. Please pray for him and their family that this works to stop his seizures.

Also, don't forget to keep praying for our Mary as well! Thanks so much for checking in on us!
Love, Eileen

Saturday, February 3, 2007 12:29 AM CST

Hi everyone,

Today I am asking that you pray for a family whose little girl is having a very hard time. I have met Abigail through the epilepsy unit and her daughter Caroline needs lots of prayers right now. Please go to their website and let them know that you are praying for their sweet girl. The site is: www.caringbridge.org/visit/carolineruby

Thank you for your prayers!
Love, Eileen

p.s. Our friend Kylie is HOME from the hospital! YEAH! Please continue to pray for her as well.

Friday, January 19, 2007 3:07 PM CST

Good Afternoon!

I'm happy to report that Mary has been doing well. She had been under the weather for a while the past few weeks between the Depakote overdose and a nasty cold, but now she has been doing great! She definitely seems back to herself now, thank goodness. Knock on wood that the seizures seem to be ok. She had one yesterday that was a bit more intense. It lasted almost a minute and she had an odd smile on her face and seemed like she was fighting to keep her eyes open. It was kind of scary but luckily it ended and she seemed fine afterward. I'm not going to call Dr. Frost unless they get worse. We have an appt on 3/14 so hopefully we can just wait until then to talk about it.

Mary's latest obsession is "crackers". It is all she talks about. She can do the sign for it and will start asking for them the minute she wakes up! Her idea of a good time is sitting in her chair watching Elmo and eating tons and tons of Goldfish crackers. She will also drink her water and when she needs more she yells for me and shakes her cup out at me. It's a pretty funny scene. She also hold her baby in her lap at the same time.

She continues to go to school, OT, Music Therapy and daycare and seems to love all of it! I'm also looking to get her into a Gymnastics class at a place in Shoreview. It is a class for kids with special needs. I really hope that we can get into it. Our time is so packed with everything that I'm hoping the class is on a Sat. They're going to send me some info so we'll see. I'm also looking at getting her into private speech as well. The same place that offers the gymnastics class also has speech. They may be willing to do the therapy at daycare which would be so great!! I need to talk to them some more about it but I hope it works out. She seems to be stuck on the same words she has always had. She learns signs fairly quickly but I so want her to be able to talk.

Things have been busy around here! Jim started a new job in December and has already had to travel to Miami this past week and he leaves for Sweden on 1/28. He is working more hours than he did at his last job, but thankfully he really seems to enjoy it. I'm actually jealous that he's going to Sweden. I asked if I could come with and it's not looking too promising!

Please say some prayers for Mary's dear friend Kylie. She had been seizure free for 10 months and now they have come back with a vengeance. We were SO hopeful that they were gone for good and it is heartbreaking to hear that she is suffering again. Kylie was admitted today to the Epilepsy Unit. Please pray that they can get them under control and fast! Her website is: www.caringbridge.org/mn/kylie. I know that they would appreciate any prayers and encouragement.

Thanks for checking in our Mary! We really apprciate all of your prayers!
Love, Eileen

Wednesday, December 27, 2006 7:24 PM CST

***NEW PHOTOS****

Hello! I hope that everyone had a nice Christmas! We sure did. On Christmas eve we went to my parent's house and Mary got to play with Tommy and Anna, and of course open presents! She was a little leary at first, but then seemed to get into it if we got it started for her. She was obsessed with the Santa that my mom has--you can see her in the photo section sitting next to it! It plays music too and she just loves it. She got lots of fun gifts, but the biggest hit so far has been the mini indoor trampoline from Auntie Jenny and Uncle Scott. It is really the coolest thing. It has handles on it and when she jumps this woman with a british accent counts for her! I'll have to take a picture of her on it so you can see what I mean!

Then, Christmas Day we went to Jim's Aunt Mimi's house near Stillwater. All of Jim's family were there including cousins Jackson, Adalyn and Amanda. The best thing was that Jackson brought his guitar! Ever since we started Music Therapy she has LOVED guitars and enjoyed every minute of Jack playing his. She also tried on one of Aunt Mimi's hats, which you can see on the front page. One of the other great gifts Mary got was a hand made book from her Grammy Judy. Judy made this absolutely beautiful book by hand and put pictures in it of Mary wearing all different sorts of hats! The pictures go back to when she was a baby. It is something we will keep and treasure forever! Thank you Judy!!!

Yesterday wasn't the best day for Mary. I counted at least 6-7 seizures. Quite a disappointment. I don't know what was going on, but I did up her Depakote today (per Dr. Frost's direction!). She is now back on the sprinkles and is doing MUCH better. She actually has an appetite now and doesn't look hung over! She had been doing really well over Christmas with barely any seizures at all. One thing that may have contributed to it all was that she didn't take a nap on either Sun or Mon. I think by Tues afternoon she was just really tired and that tends to cause her to have more seizures. Today she has had only 1 that I've seen. She did go to day care for about 4 hrs, so I don't know if she had one there.

I brought her to day care today so that I could run into work and get a few things done. Normally Jim does the drop offs and she is fine with it but with me it is horrible! She cried so hard when I left and was hugging me really tight. I felt so bad! I hung outside the door and made sure that she had stopped when I left. But, when I got there to pick her up the teacher said that about 20 min after I had left she started sobbing and pointing towards the door. I guess they almost called me but then another little girl in her class distracted her by "reading" her a book. The kids in that class are so sweet to Mary and I am so grateful for that!!

I just have to share one funny thing she did tonight--she was sitting in her tv watching chair watching one of her favorite videos and I was on the phone with my mom. I went in the room and sat on the floor next to her chair and was talking to my mom. She looked at me and said "bye" and waved at me. I said, "do you want me to go out of the room?" She then nodded her head with a big "YES"! I think I was bothering her while she was trying to watch her video! I just thought that was great that she got her point across to me that way and was annoyed that i was talking while she was trying to watch her show! She definitely suprises me with something new every day!

Well, thanks for checking in on Mary! We are so grateful for all of your prayers!
Love, Eileen

Wednesday, December 13, 2006 6:55 PM CST

Good evening!

Well, today was a much better day for Mary. We kept her home from daycare and she got to spend the day with Daddy. They went to the mall and shopped and Mary said "hi" to lots of people! Jim thought he saw only 1 seizure so that was pretty good.

I did talk to Carol this afternoon and she confirmed that the Depakote level was high. It was at 152 and normal levels should be anywhere from 50-70. So, she seems to be doing better today on the reduced dose. They also said that her platelets were low, but this is a direct result of the depakote issue. She should hopefully be back to herself by tomorrow. I am so relieved that this is a temporary issue and that it can be easily fixed. I just pray that the seizues don't get worse. The weird thing was that she started with those more intense episodes when we increased the depakote initially. Carol said the increase in the seizures could be the result of the toxic level of the drug in her system.

Thanks so much for your prayers for Mary--we love you all!
Eileen

Tuesday, December 12, 2006 6:13 PM CST

Well, it's 6:13PM and Mary is already in bed for the night. We think that she is now on too high of a dose of Depakote. I got a call from her school this morning and they said that she wasn't herself and that she's acting like she is drunk. Her balance was off and she just seemed kind of out of it. So, I cancelled her Music Therapy this afternoon but we did end up going to OT. They noticed it there too. She also hasn't wanted to eat anything and has been really crabby. I called and left a msg for Dr. Frost's nurse but haven't heard back yet. I gave her one less Depakote tonight than I normally would and then tomorrow I'm going to go back to our last dose of one pill in the morning and 2 at night. She seemed fine at that amount but since we increased to the 2 pills twice a day she seems to have gotten these weird affects. It is just SO frustrating. All she wants to do is sleep. She went to school, came home and slept for an hour. Then we went to OT and she came home and slept for another hour and now is back in bed. I didn't even give her any Melatonin! I just hate that she has to be on all this medication.

Anyway, I do have some good news among all of this! Jim got a new job! His last day at his current job was today and he is going to start at the new place on Monday. We are SO excited because it is a big company with lots of room for advancement and of course a better salary! He is going to be their Manufacturing Manager. The company makes ink for printing presses. His commute will get a bit longer since the new company is in Plymouth, but it will definitely be worth the drive.

I'll do an update tomorrow on how she is doing. I hope everyone is having a good week!

Love, Eileen

Friday, December 8, 2006 6:28 PM CST

Good Evening!

Mary seems to be doing a bit better. We haven't seen one of those more severe episodes since Tuesday, so that is good. I took her today to get her blood drawn so hopefully we'll get things figured out next week with the meds. Yesterday she woke up with her eyes kind of mattered so I just assumed that she had pink eye. Well, I jumped the gun because her eye turned out to be fine as the day went on. So, she missed school and OT yesterday. She did go to school today and did fine! We even got a note from the speech therapist who said that she said the word "bear" twice!! Yeah!! And today at the lab (where we waited FOREVER) she saw this high school age boy with a baseball cap on and actually said "hat". She also said "hi" VERY loudly to him! He played it cool and pretended that he didn't hear her! She is just SO friendly!!

We are going to have "Breakfast with Santa" tomorrow morning with cousins Tommy and Anna--it should be so much fun! Last year we couldn't keep Mary away from Santa so hopefully she is just as excited this time. Then, later in the day I'm going to the St. Paul Hotel for our mystery Christmas gift from Judy (my mother in law) with her and my sisters-in-law so that should be fun!

I hope that everyone has a nice weekend! Hopefully the weather will stay a bit warmer like it was today.

Take care!
Love, Eileen

Tuesday, December 5, 2006 7:44 PM CST

Well, the full moon is not our friend. This past Friday Mary had an episode at school where she leaned over and got kind of stiff. It lasted about a minute but then was over and she went on doing what she had been. Then last night, she did the same thing while she was eating dinner. So, it seems that her seizures are getting longer and quite a bit more intense. I should back up--last week we noticed she had been having anywhere from 2-4 seizures (her regular mild ones) per day so we called Dr. Frost's office and we upped the Depakote this past Friday. They couldn't really explain the sudden increase in seizures, but it may have to do with the fact that we switched from Depakote sprinkles (capsule form) to Depakote ER, which is a tablet form. Carol said that theoretically there should be no difference, but sometimes the sprinkles seem to absorb better in their bodies. It was after this increase that these more intense seizures started. She seems to be only having one of these a day but it is scary to see it more involved than the simple ones she had been having. The OT said she had one during therapy today as well. So, I called Carol and we are going to get her blood drawn to see where all the levels are at. They will need that info before they can make a decision on changing the meds. I just pray we can stop these quickly. It is just heartbreaking to see her have any seizures, let alone ones that are worse.

So, I will keep you updated on that. Please pray if you can for these to stop!

Thanks for checking on our Mary!
Love, Eileen

Sunday, November 26, 2006 2:10 PM CST

Good Afternoon!

We hope that everyone had a nice Thanksgiving! We went to my parent's house and Mary had a ton of fun playing with her cousins Tommy and Anna! She wasn't too thrilled with the turkey but did eat some stuffing and mashed potatos.

It is hard to believe that the Christmas season is now here! Time just flies by so fast. Mary has been doing pretty well this weekend. She has been having 2-3 seizures per day which sucks. Of course after having opened my big mouth to Dr. Frost saying that she is only having 1 or 2 a day, I just had to jinx it. This past Wed night she had 3 after I picked her up from daycare. They are her typical fairly mild ones but still so frustrating to see. So, I'm going to call on Monday and see if we can increase the Depakote.

A family from CO is here in MN at the Epilepsy Unit. Their daughter Emily is having testing and will hopefully be having surgery here in the next month or so. We visited them last night at the hospital. We had met their family at the TS Conference last July. It was nice to see them and we are praying that they have a safe trip home. Suprisingly, Mary had alot of fun down at the unit--which only happens when SHE is not a patient there! She got to see two of her very favorite nurses--Zondra and Paris. And she gave Emily's mom Dana tons of hugs!

Tonight we are going to have pizza with another TS family--Gavin and his mom and dad Steve and Whitney. We have gotten to be friends with them over the past few years. Gavin is a year younger than Mary. It is so cute to see them play together--they really hit it off!

Thanks for checking in on Mary and have a wonderful week!

Love, Eileen

Sunday, November 19, 2006 8:58 PM CST

Hi everyone,

**New Pictures***

Well, once again I have been bad at updating the website. I put if off for so long and then the thought of doing it gets overwhelming. So I just procrastinate even longer. Anyway, Mary has been doing great! We saw Dr. Frost last week and he was so happy to see her doing so well. She actually sat on Carol’s lap almost the whole time and gave Dr. Frost a few high fives! Mary’s seizures are much better these days. She is now having maybe 1-2 simple partial’s each day. She is still taking Depakote, Lamictal, and Topamax. We are in the process of weaning her off of Tranxene. We decided to do that because we don’t feel it made that much of a difference in her seizures in the first place, and it would be one less medication for her to be on.

I also have her taking several supplements. About a month ago we went to see a Naturopath. I wanted to go talk to someone who knows about that stuff and make sure that I was doing the right thing. She agreed with everything that I’m giving her and also recommended Flax Seed. I truly feel that the supplements are helping with her learning, memory and seizures. They aren’t any weird things, they are all safe nutritional supplements that I order from Kirkman. So, just in case you want to know, here is what she is taking: DMG, Fish Oil, L-Carnitine and L-Carnosine. I also printed out a description of each one and brought it with to our appt with Dr. Frost and he confirmed that they were safe. So, I feel much better now about it. She actually takes all of the pills pretty good. We put them in applesauce or baby food and for the most part she will swallow them all down!

Let’s see, what else—we went to see the eye doctor a couple of weeks ago. That has got to be the worst appt of them all for her. For one thing it takes forever because they have to dilate her eyes, then sit in the waiting room and then go back in to see the doctor. The clinic is kind of slow anyway, so it is just a really crappy appt to go to. Anyway, the good news is that the vision in her right eye has actually improved! I was concerned because her rt eye has been wandering off a little bit. He looked at them and said that she doesn’t need any treatment for it now and with her new prescription for her glasses it will hopefully improved. Thank goodness—I can’t imagine having her wear a patch! So, we ordered new glasses and they look so cute on her! Also, he said that she doesn’t have any tubers on her eyes (she never has but they could pop up) so that was also wonderful to hear!

She is also doing so well at school and therapy. It is amazing how much she understands and how she is trying SO hard to get you to understand her wants. She has learned a bunch of new signs—cracker, open, help, thank you, drink. So this has been so exciting! She also said the word “auntie” for the first time ever today! (that is what we call my sister). It was funny because she would only say it in a whisper-oh well as long as she says it!! She is still loving the school bus and all of her friends at daycare and school.

The potty training is slow but sure. She will tell you that she has to go potty MANY times a day but then the second her butt hits the potty seat she does her little sign for “all done”. It can be pretty frustrating. She has some good days and some bad days with that. One thing that is helpful is that we recently got Mary approved for Medical Assistance. This will be secondary to our regular insurance through my work. The great thing is that they will pay for pull-ups! I have to call the dr. tomorrow and get a prescription and then just bring it to Target and they give them to you! This is just amazing to me and the amount of money it will save us is unbelievable! We also had a nurse come out and do what is called a “PCA Assessment”. PCA stands for “Personal Care Assistant”. Since Mary is now on medical assistance she now qualifies to either have a PCA or we can apply for a grant to help pay for things that MA doesn’t pay for. The nurse does the assessment based upon the PCA and then based upon the number of hours we would get per week that will tell us how much we are eligible for the grant. She said that we are eligible to have a PCA for 6 hrs per day 7 days per week! That just seems crazy to me. So, we could have someone come to our house and they would be paid to take care of Mary. We are definitely going to go with the grant because we are fortunate that we have Mary’s care figured out already but in a way it was kind of depressing to find out that she qualified for that much.

One other cute thing is that Mary has been really into jewelry lately! It is SO funny. She loves necklaces and wants to wear them everyday! She has gotten a few from various people and even knows who gave her which one. The OT suggested that we try and get her to wear a bracelet on her right hand to bring awareness to it. So my parents got some cute ones and she is SO funny with them. She just looks at them and smiles. It is so fun to have her like “girly” stuff like I always did!

I hope that everyone has a safe and Happy Thanksgiving! Thank you so much for all of your love and support—it means so much to us!!
Love to you all, Eileen.

Thursday, September 14, 2006 12:33 PM CDT

Good Afternoon!

Things are going well this fall. Mary started school this past Tuesday and is SO happy to be back. She rode the bus and didn't cry at all! She is so excited because her good friend Lydia rides with her.

Mary has been doing great otherwise. We added Depakote and I'm afraid to say it outloud, but it does seem to be helping her seizures. She appears to have less of them and when she does have them they are really quick. I just talked to Carol today and we are going to up the dose just a bit to see if it will knock out those last few ones.

She had the second round of laser surgery last Thursday and it went pretty well. Dr. Lee said that he saw a big improvement in the spots since the last treatment and he also did a smaller area this time. Now we don't have to go back in for 6 months thank goodness. He said that we should just plan on going in every 6 months for treatments to keep things under control. She is healing fairly quickly so that is good. She does have a larger spot on her eyelid and he said that one would have to be cut out, but it isn't urgent that it be done. So, we'll wait until the next round of treatments and see what he recommends then. Next Thursday she has an MRI--we have to be at the hospital at 6:00AM!! YUCK! But, we need to get it done to see where things are at in that cute little head of hers.

Mary has been doing some new things lately, and it is so exciting to watch her! She can now climb up the ladder all by herself on the playset that we have outside! She LOVES going down the slide, so she gets herself all situated at the top and then holds my hand as she goes down. It is so cute. Another thing is that she can say the word "no" and shake her head no, but cannot say yes and has never nodded her head. Well, last night she came home from daycare and started nodding her head!! I worked with her and I think she definitely understands that nodding your head means yes! So now if I say to her "say yes" she will nod her head!! This is a huge step for her--we've been trying forever to get her to communicate the word "yes" to us, so we are SO excited!!

Other good news is that Jim has a new job!! He started about a month ago and really enjoys it. It is a small company that does screen printing and he is the Production Manager. We are so grateful that the stress of unemployment is behind us!

Well, it's time for Mary to have lunch and then it's off to OT!! Her schedule is kind of hectic this fall. Mon and Wed she goes to daycare (which she is still loving!) then Tues, Thurs and Friday she has school from 8:30-11:00. In addition to that she has OT Tues and Thurs afternoons from 2:00-2:50 and Music Therapy on Tues from 3:30-4:30. I know it seems like alot and I worry that I'm pushing her too much, but she really loves going to therapy and will grab the therapist's hand and say "bye" to me when we get there. So we'll keep going until she shows me that it is too much. I just feel like I have to do so much right now while we are able and while she is still little.

I promise to update again soon!!

Love, Eileen

Friday, August 11, 2006 7:45 PM CDT

Good evening,

Well, it has been a long time in-between updates and I am really sorry. It has been a stressful month with Jim still looking for a new job. He has had several interviews, so we are praying that one of them works out.

We went to the TS Conference on 7/13 and it was amazing! We met so many wonderful families and learned so much. Dr. Frost and Carol were there, so it was great to see them outside of the clinic or the epilepsy unit!

Mary is doing pretty well. She had her teeth cleaned the first week of August and that went ok. We had it done at Gillette and she had to be sedated. The dentist said that her teeth looked great and we don't have to come back for another year! So that was good news. It did take her a couple of days to bounce back from the sedation. She was pretty tired so I think it just took alot out of her.

So, last Friday we added Depakote into her med "cocktail". She was fine until we increased the dose (as we were supposed to) on Monday. By Tuesday night she was irritable and didn't want to eat anything. Then Wed. morning we got a call from daycare that she had thrown up and just didn't seem like herself that morning. Jim went to get her and she had already thrown up a second time by then and then did it a third time in the car. We decided that we better take her to the ER just to be on the safe side. I had a feeling that she was having a reaction to the increase of Depakote. Apparently that drug can increase the level of Lamictal, which is another med that she is on. If this gets too high, it can cause the symptoms of nausea, vomiting and lethergy. We luckily were only at the ER for a short time. They gave her Zofran to help with her nausea. The other reason we think that this is a reaction to the meds and not just the flu is that she isn't have any other flu-like issues. No stomach problems, etc. I did talk to Carol today and she was positive that the Depakote increased the Lamictal level. So, we decreased the dose of both the Lamictal and the Depakote so hopefully she will be back to herself shortly. Both last night and tonight she has gone to bed really early--at 6:15PM. Last night she slep 12 hours straight. She has been super irritable so I'm hoping that tomorrow she wakes up feeling better! The one thing about this is that the Depakote seems to be helping her seizures, so we want to do what we can to keep her on this drug.

She has her next laser surgery scheduled for 9/7. I'm just dissapointed that she has to go through this again, because of the sedation and because of how horrible it looks afterward. Then, on 9/21 she will have what they call a "tier 3" MRI. I guess it provides more info than the typical one. She will again have to be sedated for that and miss a day of school the first week! But, we are hopefully getting all this stuff over with now and we can go the rest of the school year without any major tests that need to be done.

Well, that is about all for now! Thanks so much for checking on us. I promise that I will try really hard to update more often. Please see prayers that Mary feels better AND that Jim finds a new job soon.
Lots of love,
Eileen

Tuesday, July 11, 2006 6:40 PM CDT

Good Evening!

I hope that everyone had a great weekend! Ours was a mixture of sadness and happiness. I went to the funeral of sweet McKenna Olson on Saturday. The service was beautiful and the Pastor was amazing--she provided so much hope in her message. My heart just aches for the Olson family. I so wish there was some way to ease their pain. I have learned so much for them after seeing all that they have gone through. Please continue to pray for this family. They need our prayers more than ever now.

Mary is slowly but surely healing from the laser surgery last Thursday. The bruising is still very obviously there, but definitely getting better. She went to daycare yesterday and school today without any problems. I was kind of nervous about how the other kids would react to her face, but it went so much better then I thought. They asked what happened to her and then just said "oh, ok". That was it! I just love how innocent these precious kiddos are!! So, one down and one to go! The next procedure is 9/6. And, I had also forgotten that we had rescheduled her dental cleaning for 8/3, so the poor thing will have to be put under 3 months in a row!

She is still having seizures everyday, and last night she temporarily lost the function in her left hand following a seizure. This is called Todd's Paralysis, and it is pretty common. The person will lose function for a few minutes but then it will come back. I was concerned about this because it could have meant that her seizures were now coming from the other side of her brain. Up until now, all of her seizures have come from the left side of her brain, affecting the right side of her body. Seeing this issue with the left hand made me very scared that new seizures were popping up on the right side of her brain. I talked to Carol today at Dr. Frost's office and she feels that the seizures are starting out on the left side and then moving over to the right, which is causing the paralysis. The reason for that is because physically, her seizures look the same and she has the same right sided drooling and droopiness to her face during the seizure. Hearing this was reassuring because we don't want the seizures switching to the other side of the brain. So, we are going to increase her Topamax by 50mg and see what happens. She has been on this drug since she was diagnosed and we haven't increased the dosage in quite a long time. Hopefully this will make a difference. If this increase doesn't work then we may be adding Depakote as well. Dr. Frost also wants her to have another MRI, which I am glad about because she hasn't had one since her surgery. This would be done outpatient, but again she would need to be sedated!

We are getting very excited about the upcoming TS Conference! We leave Thurs morning and will come home on Sunday. Our wonderful neighbors will check in our kittens and our house--Thank you Lynne and Dave!!

Thank you so much for checking in on us! Stay cool this week--it's going to be a scorcher!!!

Lots of love,
Jim, Eileen and Mary

Wednesday, July 5, 2006 9:14 PM CDT

THURSDAY UPDATE 8:15PM: Mary had her laser surgery today for the angiofibroma's on her face. The procedure almost didn't happen because she had a fever of 101 yesterday. Thank goodness she woke up cool this morning. Dr. Lee is so hard to get into, that if we had to reschedule it would be a couple of months wait. So, we got to the hospital at about 8:00 this morning and actually ran into another TS family! Their son Garrett was having the same procedure as Mary. It was kind of nice to see a familiar face. When we got there they had to put an IV in for the sedation, which of course went over HORRIBLE with Mary! Any time anyone would come in the room she would cry, wave and say "BYE". The nurses would say Oh, you're not going home yet, but I don't think they knew that she actually wanted them to leave the room! When it was time, Jim and I were able to go into the room with her. They put the anesthesia into the IV and she was out in seconds. We then had to put on these special sunglasses when he did the lasering. The laser looked sort of like a gun type thing that would "poof" everytime he did a spot. Her skin was actually smoking after each "poof". The entire procedure with the sedation took about 15 min. We then went back to the room and she woke up about 20 min later. I don't know how or why I thought she would have a "slight sun-burn" look on her cheeks, but let me tell you, she looks terrible. It looks like someone took a lit cigarette and burned spots all over her face. The areas that he lasered are dark purple. If anyone wants to see a picture, let me know and I'll send it to you. I don't think I'll post it because it is not pretty. We have to put aquaphore (like vaseline) on it several times a day and the bruising will last for a week or two. She doesn't seem to be in any pain, which is good. We can give her Tylenol for that. Otherwise, she was playing this afternoon and watching her favorite Elmo videos. She ate a little bit for dinner and them went to bed at about 6:30PM.

I also talked to Carol at Dr. Frost's office today and told them that I took her off of the Felbatol. She said that was fine but didn't seem to have too much faith in the supplement that I plan to give her! I knew that they would feel that way, but I just want to try it. I still haven't gotten it yet as they sent me the wrong thing last week, so hopefully that will arrive tomorrow. She is still having seizures everyday, but they are fairly mild and we haven't seen any major change since we took her off of the Felbatol. Carol is also going to get us in for an appt with Dr. Frost in the next month or so.

We leave next week for the National TS Conference in Chicago. Mary is going to stay home with my parents. We are really looking forward to meeting other families and learning more about TS. Dr. Frost and Dr. Dunn (who did Mary's surgery) are both going to be there along with tons of other medical people who specialize in TS.

*************************************
Today is a sad day. Mary's friend McKenna Olson passed away. She had a rare condition called Alper's. This horrible disease took her older brother Drew away less than one year ago. I can't imagine the immense pain and grief of losing 2 of your beautiful children. Please pray for this family. Their website is: www.caringbridge.org/mn/drewolson.

Sunday, June 25, 2006 8:18 PM CDT

UPDATE: Monday 11:30 AM: We just got back from seeing the dermatologist, Dr. Lee. He is such a nice doctor, we like him so much! Anyway, he said that Mary needs to have laser treatment right away--he recommended within the next 6 months. He said that the spots on her face (they're called angiofibromas) will keep getting worse and since she has them at such a young age if we do nothing they will become quite severe. So, she is scheduled for the first treatment next Thursday (they were able to squeeze us in!) and a second treatment in early September. This will be an outpatient procedue, but will be done in the hospital--at Fairview University. The procedure itself will only take about 5 min. Luckily the recovery is pretty quick--her face will feel hot the first day or so but shouldn't bother her too much. They are also going to remove an angio on her eyelid--she has had this since she was born, but he said that it should be treated as well.

Also, please keep Mary's friend McKenna(www.caringbridge.org/mn/drewolson) in your prayers--she is in the PICU at Children's Hospital.

Good evening!

HAPPY 4TH BIRTHDAY MARY!!!

Mary turned 4 on Friday!! We had a family party on Sat and she had so much fun! She got a tricycle from Mommy and Daddy and a little people toy from Auntie Jenny and Uncle Scott and a ball toy and baby from Grampy and Grammy!! It is so hard to believe that she is such a big girl!! We love you Mary!!!!!!!!!!

I am so sorry for the long time between updates. Things have been really hectic here. We just got back from a wonderful trip to Myrtle Beach with my parents! We went for 5 nights and it was so much fun. Mary did GREAT on the plane--much better than we thought she would. We brought the DVD player, which was a godsend and she watched Elmo and ate her snacks like a trooper! The only time that was hard was when our plane was delayed for 2 hours in Atlanta on the way home. Talk about frustrating. Trying to entertain a very active toddler for 4 hours in that busy airport wasn't pleasant! But, the trip itself was great--Mary LOVED the ocean and the pools. We had a deck on our condo that looked right onto the ocean and she would point out to it and then do the sign for "please"! It was SO cute. She would stand there and let the waves run into her legs and would just laugh and laugh. We also spent alot of time in the pool which she also loved! My parents bought a floater thing for her and she loved to ride around in that and watch all the other kids. I should explain that my parents were already there when we arrived and they picked us up at the airport and we shared a condo. It was SO much fun being able to just spend time with them relaxing and watching Mary have fun with them too! I'll post some pictures as soon as I can!!

Mary started summer school last week and is taking the bus. This has been a difficult change for her. She gets so excited when she sees it coming around the corner, but when she goes on and gets set in the booster seat she starts to cry. The first day was so hard--I was going to ride with her but there wasn't any place for me to sit so they wouldn't let me. It was just awful! I'm standing there with the bus driver and the aid looking at me like "what are you going to do?" and I had to make a quick decision. So, I left her on the bus. I felt SO bad--like I was abandoning her! I was crying myself. So, I got in the car and headed straight up to the school to wait for her. I found out that she had stopped crying almost right away but then when she saw me at school she started in again. The second time she was on she cried the whole way to school. I just pray this gets better because I would really love for her to be able to ride the bus to school next year! We're going to keep working on it and hopefully she will understand that everything is ok on the bus!

As far as her seizures go, the stupid things continue every day. I had said in a previous update that we had started her on Felbatol. She started out ok on it, but was still having seizures. So, I called Dr. Frost's office and they said we could increase the dose, which we did. With this increased dose she started having some side-effects. She wouldn't eat anything and was crying all the time. She also started walking like she was drunk and fell over 4 times. It was horrible--we couldn't get her to take any of her meds and she wanted to go to bed at 5:00PM. This happened the weekend before we left for Myrtle Beach. I called the dr. on call and they said that we should keep her on the same dose, but give her a bigger amount in the morning and see what happens. Well, the next day which was a Sunday, things didn't get any better. So, we decided to reduce the dose ourselves and now have decided that we are going to take her off of it completely. Our rationale for this is that it's not helping the seizures, and the side effects of any increase from the dose she is currently on are unacceptable. I'm going to call Dr. Frost's office tomorrow and tell them what we're doing, but I have really had it with her being on all these meds without seeing any benefits. I'm going to add a supplement called L-Carnosine and see what happens. It is supposed to help with seizures and cognitive development. I figure that nothing is as bad as all the side effects of the drugs she's on and this supplement is totally safe. If it doesn't work, then we will consider adding something else. It just seems that we've tried every drug out there without any success. So, I'm just going to try this and see what happens.

Ok, if fighting Mary's seizures weren't enough, about 3 weeks ago Jim found out that he will be leaving his employer. I won't go into details on all of this, but he will be getting pretty decent severence pay and he is working there until the end of June. He is looking for a new job and has had alot of prospects and 2 interviews. This was just something we definitely weren't expecting and as you can imagine has been very upsetting. I've been pretty depressed between this whole job issue and Mary's seizures, so that is probably why I haven't done an update in a while. So, if anyone is looking for a very qualified Production Manager, please let us know! : )

Thanks so much for checking in on us, we really appreciate your thoughts and prayers.

Lots of love,
Jim, Eileen and Mary

Thursday, June 1, 2006 8:35 PM CDT

Hello!

***New Pictures***

Just wanted to update you that I did talk to Carol at Dr. Frost's office today. I have to say that she is so great. Every time I call her I've got a million questions and she is just so reassuring. Anyway, we are going to increase the Felbatol and we are also going to switch to the pill version--she had been on the liquid. It is so much easier for her to take the pills so we are very happy about that! I pray that this starts kicking in soon--I am getting so sick of seeing the seizures. I just want them to STOP!!!

She also faxed a note to Dr. Lee's office (the dermatologist) and they are going to give it to Dr. Lee and call Carol when he approves seeing her. She will then call me and I can then call and make an appt. Are you confused yet???

Thanks to my parents for having Mary overnight last night and my mom for taking her to therapy and school today! I had a dentist appt this morning so thankfully she was able to take her. Mary has been doing really well at OT and has been using her right hand so much! This morning the therapist was so excited because Mary reached up to grab her hair (the therapist's) 10 times with her right hand!! And, at school today they told me that she is tolerating drinking out of a glass much better! I guess when they started she was very resistant to even having the glass put to her lips, but now doesn't get upset when they do that which is great!

I also have a funny story about Mary at school--my friend Kim's little boy Nicholas is in her class and when I picked Mary up on Tuesday the teacher told me that she was almost sent to the principal's office! Apparently she was sitting next to Nicholas and kept touching his leg. Nicholas in turn would yell "stop touching me!" And then Mary would smile and do it again. Yep, she's a trouble maker already!!!

Thanks for checking in on us!! Love to you all!!

Eileen

Tuesday, May 30, 2006 7:58 PM CDT

Hello!

I hope that everyone survived the heat this weekend! We didn't do too much which was kind of nice. Saturday night we went to my sister's house for dinner and the kids had a great time playing out in the back yard. Mary just loves playing with her cousins so I knew she would have tons of fun. Unfortunately Saturday wasn't the greatest day for her seizures. I don't know what the deal was, but she had at least 5-7 of them. Very frustrating. We just increased the Felbatol on Sat. night, and then yesterday and today there seem to be fewer of them. But, I'm going to call Dr. Frost's office tomorrow and see if we can increase the dose again.

Sunday it was so hot out that we filled up the pool and cousin Tommy came over to swim. They had so much fun! Mary LOVES the water and could stay in there throwing toys around all day. On Monday we went to Bloomer to visit Grammy and Grampy Hable! It was nice to see them and Mary was able to play with her other cousins Adalyn and Amanda. They played outside with the hose and Mary got a ride in the wheelbarrow and the wagon--she was in heaven!!

Today it was back to our regular schedule of OT and school. Of course Mary was thrilled to go to both of those! Oh, and we have big news...Mary stood up all by herself in the middle of the floor!!!!!!!!!! In the past she has always had to hold onto something in order to stand up, but now she is able to push herself up with both of her hands and get to the standing position. She did it for the first time last night and I just about fell over when I saw her! We keep making a big deal about it and she is so proud of herself, it is so cute to see! It made me feel so good to see her do this because it shows that she is continuing to progress despite the seizures. Now if we could just get her talking!!!

I'm also trying to get her in to see the dermatologist. One of the unfortunate consequences of having TS is skin issues and Mary is starting to get these on her face. They are called angiofibromas and they need to be treated early so that they stay under control. They look like freckles right now, so I want to treat them before it gets too bad. The dr that we need to see is apparently very busy--I called their office last week and they said that he isn't accepting new patients right now. I told the woman on the phone that we are with the TS Alliance and she said that didn't make a difference. So, I have to get a written referral from Dr. Frost and then they will contact me to make an appt. Nothing is ever simple!

One request that I have is that you keep my Aunt Pat (my mom's brother's wife) in your prayers. She is currently in the ICU due to respiratory problems. Please pray that her lungs stay strong and she is able to breathe on her own.

Thanks so much for checking in on us!!

Lots of love,
Eileen

Sunday, May 21, 2006 8:40 PM CDT

Good evening!

I hope that everyone has had a nice weekend! We didn't do too much which was kind of nice! Yesterday we had a play date with my sister Jenny, her kiddos Tommy and Anna and my friend Lisa from high school with her two little ones Elise and Jack. Mary had a fun time with the kids! Today my parents watched Mary for a few hours so we could get some stuff done--cleaning, bills, etc. Wow, you can get SO much more done without a little destructo girl following behind you!

Mary is doing well. We started her on Felbatol this week--so far we haven't noticed any side effects, or for that matter any improvement in her seizures. She is on a pretty low dose to start with, so I'm not giving up hope yet. We took her off of Keppra last week, so that one is over with. Please say some prayers that the Felbatol works!

Mary continues to do well at school! Last week she proved that she knows all of the kids names! While she can't say them, she pointed out each one when the teacher asked for them by name. And, she is transitioning to the next class at Kinderberry! Each day she is going in the with "big kids" (2-3 yr olds) for a couple of hours to get her used to the teachers and the other kids. So far so good--she walks right in without a problem. I met one of her new teachers and she was super nice and said whatever we needed she would take care of. That made me feel so good!

Please keep all of Mary's friends in your prayers--Lydia, Nicholas, Kylie, Jessi and McKenna. McKenna's seizures started up so PLEASE say some prayers that the meds work and they stop.

Thanks for checking in on Mary--we appreciate it!!
Love, Eileen

Monday, May 8, 2006 9:14 PM CDT

Hello!

THANK YOU, THANK YOU, THANK YOU!!!!!

We would like to thank everyone who donated,volunteered and/or came out to the walk on Sunday--it was a huge success! The total raised was over $55,000!! Team Mary raised the most money out of all the teams--our total was over $7000!! We were blessed with a beautiful day and a wonderful turn-out! We are so grateful to everyone who supported us in this event--it means more than you know. We are so lucky to have such caring, supportive family and friends. There is no way we could deal with all of this without you!

We would also like to thank the band, Yo Jimbo! They were fabulous and everyone was talking about how wonderful they sounded! Thank you Steve Klein and all of the band members for their time and talent!

Just a quick update on Mary--we have started decreasing the Keppra and we have already noticed that she is having less seizures. We have to call Dr. Frost's office tomorrow to get the next step in her "game plan" so we'll see what they say.

Thanks again to everyone--we love you!!!
Jim, Eileen and Mary

Thursday, May 4, 2006 11:35 AM CDT

Good Morning!

I apologize for not updating last night, but I was just too tired. As you know, Mary was released from the hospital yesterday around 12:30PM. I had to work, but Jim was there to talk to Dr. Frost about the game plan for Mary. He said that all of her seizures are coming from the same place in her brain, still on the left side. He did say that the reading on the EEG was fairly faint, which means that they are coming from deep within her brain. He also said that her EEG is clear when she is not having a seizure, which is great news because it means that there is no subclinical seizure activity going on. So, we are going to make some changes to her meds. We are cutting her dose of Keppra in half and then we are supposed to call Carol next week to see what to do next. There is a chance that the Keppra was actually making her seizures worse, so we will see if they get better once she is off of that drug. He would like to get her down to only 1 or 2 seizure meds (she is on 4 right now) so I'm glad about that.

I am so happy that we went in and got this over with! Dr. Frost said that he got all of the info he needed to make a plan for future med adjustments. I'm excited to see if we can finally get these seizures under control! He also said that he was pleased with her development and didn't feel that the seizures were slowing her down much if at all. I'm not sure if I totally believe that, but I'll go with it!

So, it was back to our regular schedule today--OT this morning and now she's at school. At school they always do music right away and today they played one of Mary's favorite Wiggle's songs--she got this huge smile on her face and started dancing up a storm! It was SO cute!! So, she seems to be back to her happy self despite the stress of being in the hospital yesterday!!

Julie Nelson said we should watch for Mary's story this Friday at 5:00--it will be on barring any breaking news. And, don't forget about the walk this Sunday!! Registration starts at 9:00 and the walk starts at 10:00. If you need directions, please give us a call!!

Thank you so much for checking in on Mary and for all of your prayers during this stressful time. We love you all!!

Love, Eileen

Tuesday, May 2, 2006 9:14 PM CDT

UPDATE 12:50 PM: Mary is now on her way to Grammy and Grampy's house! We talked to Dr. Frost and got a pretty good report. I'll update with the details tonight, but wanted to let everyone know that Mary was able to go home today. Thanks so much for all of your prayers!

Good evening!

Well, one day down at the hospital. We got there at about 9:30 this morning and checked in. We got up to the unit around 10:00 and were very happy to see that we got our own room! Mary started getting unhappy the minute we went into the admitting office--this girl doesn't forget anything! We got up to the unit and they had to go through a bunch of questions about where things are with Mary, her meds etc.

Unfortunately, she had 2 seizures before she was even hooked up to EEG. They started putting the EEG wires on at around 1:30 or so. There was another little boy there ahead of us who got his on first. And, as we knew would be the case, the putting on of the wires was horrible. They put Mary in this "papoose" contraption where they lay her on this plastic board and then this fabric is velcroed over her to keep her from moving. I felt so terrible doing this to her. She cried so hard the entire time they were putting them on, which was close to 1.5 hrs. Poor girl has little red dots from breaking blood vessels all of her face! There are 27 wires that they have to put in specific places on her scalp so it can end up taking a while, especially with a wiggly little girl.

After the wires were put on she did calm down and fell asleep for about a half hour. Since she was hooked up, she has had 4 seizures, the last one being kind of long, I think over a minute. We are hoping that these will provide the info we need. We saw Dr. Frost today and he said that he needs her to have her "typical" seizures and they need to all look the same on EEG. If they don't, they may need more info to see if she is having different seizure types. Mary's seizures since the surgery have all looked the same, so we are hoping that things match up and we can get out of there tomorrow.

Thank you SO much to my sister, who came down to visit with both of her kids, and to Kim--what a great suprise to see you!! Thank you SO very much for making the trip down!! You are such a great friend!! And thanks to Maria for visiting us on your break!! It was great to see you and we are SO happy that Miss Kylie has been seizure free now for over SIX WEEKS!!!! YEAH!! And a HUGE thank you to my mom who is sleeping over tonight with Mary so that I can go to work tomorrow. Mom and Dad, we don't know what we would do without you!! We love you!!!

Ok, as far as the KARE 11 thing goes, they now tell us that it will be on either Wed or Fri this week on the 5:00 news. I'm not going to tell anyone an exact date anymore because there is always the chance that we can get bumped.

Thank you so much for checking on us. I pray that once they do get the info on the seizures that something can actually be done to stop them. It is so frustrating because it seems that they have been more frequent in the past few weeks. Thanks so much for your prayers--we are so grateful to all of our family and friends for all of your love and support.

I'll update tomorrow again when we know what is going on. Jim is going to go in the morning to be there when Dr. Frost does rounds, so I should know something by early afternoon.

Take care!
Eileen

Thursday, April 27, 2006 9:42 PM CDT

Greetings! It has once again been a very long time in between updates, and we have alot to share with everyone! First of all, I would like to thank everyone who has donated to the TS Walk. Words cannot express how grateful we are to you. Thank you so very much. We look forward to seeing everyone at the walk! Please pray for nice weather!!

The second important thing we have to share is that Mary is going to be a movie star!!! A couple of weeks ago Julie Nelson from KARE 11 came to our house and interviewed us about TS. KARE is going to do a story on Mary and TS!!! It will be on the air sometime next week. We don't know the exact time yet, but I will definitely update when we do. I do know that it will be on the 5:00 news. Also, Jim, Mary and I are going to hopefully be on KARE 11's Saturday morning show either this Saturday or the next one. It will just be a short spot in the backyard with Belinda Jensen. We are excited and nervous about all of this. Of course I'm terrified to see what I'm going to look like on camera--I just pray we all look decent!! I will post on Mary's page the details of everything when we find out.

Well, Jim and I just got back last night from a very needed vacation to Playa del Carmen, Mexico. We spent six days laying at the pool and the ocean in the 90 degree heat. It was fabulous!! This was a trip through Jim's work and the resort we stayed at was beautiful! My wonderful parents took care of Mary while we were gone and took her all over town for school and therapy. Thank you SO much Mom and Dad--we love you!!!

Mary has been doing well. We got good news at the eye doctor in early April--she doesn't need to wear a patch! He said that her right eye isn't wandering like it was and is just fine. Whew! We are very relieved to hear that. Mary has also started going to OT at Children's Theraplay. She LOVES it there! The therapists are wonderful and Mary just walks right back there like she owns the place. She has been definitely using her right hand much more than she has in the past. She is obviously trying to use it now, rather than before when she would just ignore that it was there. She is also doing well at school and is trying very hard to imitate actions and some words. When you say a word that you want her to say she will watch your mouth so closely and try to mouth it back to you. I just know that these words are in there some where just waiting to come out!

Unfortunately, the seizures continue. Some are as short as 5-10 seconds, others last as long as a minute. She is having anywhere from 1-5 a day--and these are just the ones that I see. They appear to still be simple partials. This is just so frustrating. So, we are going to be heading to the Epilepsy Unit on Tuesday (5/2). They are going to do a 24 hour video EEG and will hopefully figure out where these seizures are coming from. We are praying very hard that we will only have to stay one night. Let's just say that Mary does NOT do well at the hospital (and neither do I for that matter!). Putting those EEG wires on her head is going to be an absolute nightmare. I am so dreading this. My awesome mom is going to stay overnight with her on Tuesday because I have to go to work on Wed. I would normally take the day off, but after being gone for a week and a half I can't really ask for another day off.

So, I will update again when I know the exact dates that Mary will be on KARE 11 and I'll update on how the hospital stay goes. Please keep Mary in your prayers. We pray that they can find a way to make these seizures stop.

Thank you for checking in on our Mary! We would not be able to get through this without our family and friends!

Love, Eileen

Thursday, March 30, 2006 9:28 PM CST

Good evening!

Well, the teeth cleaning turned out to be a no go. We arrived at Gillette at exactly 6:15 AM to get her checked in and right away the nurse asked about Mary's cold. She has had a cough, but no fever or any other symptoms. The nurse told us right away that there was a good chance that the procedure wouldn't happen today because of that, but the anesthesiologist would be the one to make that call. When the dr. came in he heard her cough and said that if she were his own child he would not do it. The reason is because they have to put a breathing tube down her throat and if you already have irritation there it may cause significant post-op complications. So, I definitely didn't argue with him and we packed up and left! We're going to reschedule most likely in early June, well past the cold season to hopefully avoid this same issue again.

Mary actually did pretty well with everything. She did get upset when we got to the surgery waiting room but calmed down once we were in our little area to wait to see the doctor. The nurses and everybody there was SO nice. I was trying not to have too many flashbacks to her brain surgeries, but it was hard not to! I had to keep reminding myself that all they were going to do was clean her teeth and that it was no big deal, but you still worry when they put them under. So, now I can wait and worry about it another day!

Once we got home Mary luckily took a nap (and so did I!) and then were able to get outside and enjoy the wonderful 50 degree weather! She has this shopping cart that she loves pushing down the driveway and then laughs so hard when I pretend that it bangs into me. We also went on a short wagon ride. One thing we are definitely going to get for her in the very near future is a new tricycle. They have her riding one up and down the hallway at school and she absolutely loves it!! That was the one skill they said in the IEP meeting that she is actually age appropriate for. She holds on with both hands and tries very hard to keep both of her feet on the pedals. We are going to head to Toys R Us one of these days and see if we can find the right one for her.

Please keep Mary in your prayers that her seizures stop. She had around 3-4 today that I saw. I have a bad feeling that we are going to be paying a visit to the Epilepsy unit in May. I have no idea what they're going to do once they have the seizures recorded--I've really lost my faith in all the medications out there. It gets so frustrating when she's been on every drug known to man for seizures and nothing helps. I start to wonder if this is the way she's going to have to live for the rest of her life? I just find that totally unacceptable. There has to be a way to stop them. I guess we just have to keep praying.

Have a wonderful weekend!!

Lots of love,
Jim, Eileen and Mary

Monday, March 27, 2006 8:17 PM CST

Good evening!

Mary is on spring break so no school until next week!! But, our week is still pretty booked with appointments. On Thursday, Mary is having her teeth cleaned under sedation at Gillette. Since she needs to be sedated she had to go see Dr. Sackett (pediatrician) for her pre-op physical today. As you can imagine, that did not go over too well. She has a cold, but otherwise got a clean bill of health. The dr. said that if she has a fever we should cancel the "procedure" but if not, she'll be fine. The worst part of this whole thing is we have to be at Gillette at 6:15 AM on Thurs--I am definitely NOT a morning person so this will be close to torture for me. The dentist told me at her initial appt that the whole thing should only take about 20 min, so hopefully we'll be out of there fairly early.

We also have Music Therapy twice this week--Tues and Friday. I added an extra session this week because there isn't any school. Thank goodness Mary sees music as play and not work, so it's not too hard to get her excited to be there!

Next week we go back to see the eye doctor. The last time we were there he thought that her right eye may "wander" a bit. He wanted to keep an eye on this, so we are going back in so he can see if it has gotten any worse. If it has (I don't think so, but then what do I know??!!) then she may have to wear a patch (god help me) or I've been hearing from people that they can also put drops in her eye that makes her vision blurry so she is forced to use the eye that is wandering. So, we'll see. That will also prove to be a pleasant appointment--the last time we were there Jim and I had to hold the poor girl down. She just gets SO terrified. I wish she understood and I could explain these things so she wouldn't get so upset. Maybe someday.

We have added the new drug, Keppra, and she has been on it for about a week now. I'm not really sure if we've seen a difference in the seizures. There may be fewer, but I need to do better at keeping track. I try to keep track in my head but then forget the number. Please pray that this works so we don't have to go back to the Epilepsy Unit in May.

I'll update later on how the dental appointment goes! Have a great week!!
Love, Eileen

Thursday, March 23, 2006 9:27 PM CST

Good evening!

I know that again, it has been an extremely long delay between updates--I really have no excuse! Thanks so much to everyone who checks in on our Mary.

Things have been going pretty well at our house. Jim went to Washington D.C. a couple of weeks ago and met with several representatives to lobby for increased funding for TS research. His visit, along with many others from across the country was very successful!

Mary has been doing well. Seizure wise, they unfortunately still continue. We talked to Dr. Frost's office this week, and we are going to go retry a drug called Keppra. This was the first anti-seizure med that she was put on after the diagnosis and she was taken off of it a couple of years ago. The thought is that maybe it could help even though it may not have in the past. If that doesn't work, then we will definitely be heading back to the epilepsy unit in May to record her seizures on EEG. They need to know exactly where they are coming from and just get some basic info before deciding where to go from here. There is a *remote* possibility of further brain surgery IF her seizures have jumped to another tuber that isn't in an area of function. And, while the very last thing we want to do is go through another surgery, we will do whatever it takes to stop her seizures.

As I had said in a previous post, we had Mary evaluated by a private OT in early February. Well, we got the report back last week and it was kind of depressing. Basically, it said that she has a significant delay in all areas. We also had her IEP meeting with the school district this past Tuesday and they said the same thing. She is in the 1st percentile if you compare her to other kids her age. As you can imagine, even though we knew there were some delays, it is very hard to be told these things. But, the school district is very positive and said that she is continuing to learn and that she has alot of potential--which of course we know! She is also going to start the private OT twice a week, so we hope to see some progress with that as well. The school also emphasized that she does have a scattering of skills and is better at some things than others--aren't we all!!

I was pretty down about all of this, but then when I'm with my little angel, I totally forget about all that. I just love her SO, SO much. She has SO many positive qualities--I could go on and on about her infectious laugh, her sweet smile and her funny ways. And, despite what they say about percentages, I know that she is a very smart girl. I know for a fact that she understands so much more than what she can verbalize.

Also, just a reminder that the Step Forward to Cure TS Walk is on May 7th. We will be sending out a letter to everyone in the very near future. We would love to have you walk with us! It is going to be a great time. Our friend's band, Yo Jimbo is going to play and we are so excited and grateful for that! They are awesome, so that alone should motivate you to come out!! Please give us a call if you want more info on this fundraiser.

Before I end, I ask you to please pray for two of Mary's friends that are having a hard time right now. Kylie, who has TS is waiting to find out if she could possibly have Cystic Fibrosis. As you can imagine her family is very upset and we are praying that this is not true. Kylie's website is listed above. If you're able, please check in on her and sign her guestbook. Also, please pray for Mckenna Olson. She is a friend that we haven't met yet, but hope to soon at her benefit on April 9th. Please check out their website: www.caringbridge.org/mn/drewolson

Kylie and McKenna are beautiful girls who need lost of prayers right now.

Thanks again for checking in on our Mary!! We are so grateful for the love and support of our family and friends.
Love, Jim, Eileen and Mary

Friday, February 10, 2006 7:13 PM CST

Good evening!
We went to the Children's Theraplay evaluation today and things went really well. Luckily they didn't have to re-do any standardized tests since she has had testing done with the past year. Mary basically got to play with some toys and color with markers! She was nervous at first because it kind of looked like a doctors office, but then warmed up very nicely to Maggie, the OT. She recommends that we attend therapy twice a week at least to start out with. She is going to write up a detailed report identifying goals and treament plans and it should be ready within the next couple of weeks. It is going to be tricky trying to coordinate this with everything else we have going on, but with the help of good old Grammy we might be able to pull it off!

After the evaluation we went out to eat at our favorite Mexican restaurant and let's just say that Mary is not shy at all. She had a blast eating tortilla chips and
saying "hi" to everybody who passed by. By the time we got home she had just enough energy to take her meds and crawl into bed!

Oh, and I only saw 2 small seizures today, so maybe the Tranxene is helping. I’m afraid to say anything out loud in case I jinx things and make them worse again!

Well, that’s about it for today! Have a great weekend!!

Love, Eileen

Here is one more poem that I found that I just had to share:

Children Are: Children Need:

Amazing, acknowledge them
Believable, trust them
Childlike, allow them
Divine, honor them
Energetic, nourish them
Fallible, embrace them
Gifts, treasure them
Here now, be with them
Innocent, delight with them
Joyful, appreciate them
Kindhearted, learn from them
Lovable, cherish them
Magical, fly with them
Noble, esteem them
Open minded, respect them
Precious, value them
Questioners, encourage them
Resourceful, support them
Spontaneous, enjoy them
Talented, believe in them
Unique, affirm them
Vulnerable, protect them
Whole, recognize them
Xtra special, celebrate them
Yearning, notice them
Zany, laugh with them
~author unknown

Friday, February 3, 2006 9:59 PM CST

***NEW PHOTOS***
Hello! I know it has been way too long in-between updates—it has been a busy month and a half. Mary has been doing great! She continues to do well with day care, school and Music Therapy. I have scheduled her for an occupational therapy assessment at a place called Children’s Theraplay on February 10th. The reason for this is that she really needs to work on her fine motor skills and some sensory issues. She is not using her right hand as much as we would like. It has been a slow recovery on that issue since her surgery. Also, we are going to see if they can help with some sensory problems—she gets VERY upset whenever she gets a haircut, gets her nails trimmed or her hair combed. This has been going on for a while, but now we want to see if they can help her get past these things. We were planning on going back to Gillette this summer, but I found this place in Maplewood and it will be much closer with easier parking!

One exciting new thing we have to share is that Mary is working really hard on potty training! We taught her the sign for “potty” and she seems to really understand what that means. There have been many instances where she signs for potty and we put her on there and she goes! I think the Dora potty seat has provided some motivation too! She still wears pull-ups all the time but I’m still so proud of her! I was starting to get worried that we would never get her to understand all of that.

She is also now sleeping most every night in her new toddler bed that she got for Christmas. We call it her “big girl bed” and she just loves it! The only downfall is that now she can get in and out of bed as she pleases! She likes to open and slam closed the drawers or cupboards of her dresser to get our attention. When we go in there she just laughs because she knows that she has us trained to go right in when we hear her doing that!

Mary has also mastered a new word—“NO”! She has said this for a while, but sometimes it wasn’t at an appropriate time, well she definitely knows the meaning now! If you try and hand her something she doesn’t want, or you ask her if she wants to do something, she doesn’t hesitate to say a loud “no”! While this can be kind of bratty at times, I’m THRILLED that she’s using the word appropriately and asserting her opinion! : )

A couple of weeks ago Mary had her first dentist appointment—as you can imagine she didn’t really enjoy it too much. The dentist specializes in special needs kids and is at Gillette. He was very nice and all he did was count her teeth, which was pretty easy to do since she was screaming at the top of her lungs and had her mouth wide open! She is going to be put under on March 30th to get a good cleaning done and some x-rays taken. He said it should only take about 20 minutes, so thankfully she won’t have to be put out for too long.

As far as the seizures go, she unfortunately continues to have a few simple partials each day. We are now in the process of trying a new medication called Tranxene and taking her off of the Gabatril. Please pray that this new drug works as we are running out of options to get these seizures to stop. She has pretty much been on every drug out there. They may go back and retry some drugs that she was on in the past if the Tranxene doesn’t work. I talked to Carol at Dr. Frost’s office and she said these little ones are the hardest to get rid of. The VNS may also be an option but Dr. Frost doesn’t want to do that yet—he’d rather try out more meds and use that as a last resort, so we’ll see. Dr. Frost doesn’t think that these little ones are interfering with her development—I pray that is true.

Please mark your calendars for the Step Forward to Cure Tuberous Sclerosis walk that is set for May 7th! Hopefully the weather will cooperate and it won’t be too cold. Julie Nelson from KARE 11 has generously agreed to be an honorary chairperson for the walk and we got to go to KARE 11 studios a couple of weeks ago to get our picture taken with her and some other TS families. Julie was so nice and gave us a tour of the studio, which was really cool to see! We’ll be sending out some more info in the next few weeks. It is at Como Park Pavillions again if anyone is interested in walking with us!

Thanks so much for checking in on us! We really appreciate all of the prayers and kindness from everyone. We would not be able to get through this without them. Please continue to pray for all of Mary’s friends—Lydia, Nicholas, Kylie, Jessi and Zoey. Lydia and Nicholas are Mary’s friends from school and I have been so lucky to be able to meet their moms. We were invited over to Lydia’s house last week and it was just so nice to talk with her parents because we have so much in common. They are a great family and I feel so blessed to have met them! Also, Nicholas’s mom Kim has become another great friend and we just met a couple of weeks ago! She is an amazing person and I just know that we are going to be very close friends. It’s just crazy that both of these great women live only about 5 min from me and we just met! Also, Kylie is a big sister as of yesterday! Baby Ava Grace was born into the Gibbons family last night. We can’t wait to meet her! Check out Kylie’s website—they’ll probably have pictures soon! Also, Jessi is going through a hard time right now with her seizures, so please say some prayers as she most likely is going to need additional surgery in the very near future. And Zoey, who had a hemispherectomy is doing great at Gillette! Please keep these beautiful kids and their families in your prayers.

I promise to update more often—and thanks again for checking on our little peanut Mary!

Lots of love,
Jim, Eileen and Mary

The poem below is dedicated to the wonderful mothers that I know who have children with special needs. You may have already read this one, but it is definitely worth reading again.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

Saturday, December 24, 2005 10:42 PM CST

Merry Christmas! Wow, what a difference a year makes. Last year at this time Mary was recovering from brain surgery. When I look back at pictures, she was so weak and thin. She could barely crawl and had a hard time just sitting up on her own. This year has brought us many blessings for Mary. She is walking, saying some words and using the potty! It really is amazing how far she has come. We thank God every day for the blessings he has given us.

Mary has had a great week! On Thursday we went to her school holiday party and she had a blast! We saw her little friend Lydia and I got to chit-chat with her mom Kim. Kim and I have so much to talk about--we plan on getting together after the holidays. Lydia doesn't have TS, but it really helps to talk to others who are going through things similiar to what we are. They are a great family and we can't wait to get to know them better!

Last Sunday we celebrated Christmas with the Hable family at our house. It was so fun to see everyone and we had a great time!! Mary had so much fun playing with her cousins, aunties, uncles and of course Grammy and Grampy. Grammy and Grampy got Mary a toddler bed for Christmas. She LOVES it! We call it her big girl bed and she seems to know exactly what we mean. She has been sleeping in it for quite a few nights now. We are actually going to take the crib out of her room this weekend. We are so excited that she is sleeping there because it shows that she is moving forward from the baby stage.

Tonight we had a blast celebrating Christmas at my parent's house. Mary and her cousin Tommy had so much fun opening gifts. Tommy was into this a bit more than Mary was--she was more interested in playing with the item once it was opened rather than the actual opening of it. One gift that was a huge hit was a nylon tunnel that Uncle Scott and Aunty Jenny got her--she played in that for a half hour at least! She would crawl through the whole thing come out the other end and then crawl back in again. It was even more fun when Tommy would head in the opposite end and Mary would just laugh so hard!

We headed home tonight around 7:00 and then Jim took a nap for an hour before he had to head for church. He is singing at Midnight Mass tonight in a small group. Mary fell asleep immediately after we got home. The whole time in the car she kept saying "nigh nigh", so we knew that she was definitely ready for bed. Tomorrow we head back to my parent's house to celebrate with our extended family. This is always a fun time and we're looking forward to it!

A quick update on Mary's seizures--I mentioned in my last post that we were waiting to hear back from Dr. Frost's office. We decided that one of the meds that Mary is one--the Pregabalin is not doing much for her. When we increased the dose a few weeks ago we saw no change. So, we are going to take her off of this drug and possibly another one that she is on that is in the same family--Gabatril. At that point, we will likely go into the hospital to record her seizures on EEG. Dr. Frost wants this info to see if he can see exactly where they are coming from. VNS may be an option, but he needs some more info before making that decision. There is also a drug from Canada that MN Epilepsy Group is doing a study on, and Mary may also qualify to try that out. So, we'll see. We need to call them back once she gets off the Pregabalin to find out what to do next.

We want to thank you for checking in on and praying for Mary. We also ask that you pray for Mary's friends--Lydia, Kylie, Zoey and Jessi. Zoey had a hemispherectomy this past Wed. This means that they removed half of her brain. Please say extra prayers for this beautiful girl and her family. We feel so blessed to have met these wonderful families. I don't know what I would do without their friendship and support.
Lots of love,
Jim, Eileen and Mary

Thursday, December 15, 2005 11:18 PM CST

***NEW PHOTOS****
Hello! Ok, I really apologize this time for the extreme delay in-between updates. I’ve been meaning to do it, but kept putting it off. We really appreciate everyone who comes to check in on our Mary!

We are so happy to report that she has been doing great! School and daycare continue to go smoothly. She is a busy girl going to school on Tues, Thurs and Fri and daycare on Mon and Wed. She is also still attending Music Therapy, which is going great as well. She receives OT, PT and Speech at school.

Mary is definitely developing her own personality and we’re seeing it come out more and more as time goes on. She has such a sense of humor. She thinks it is so funny to say “NO” and then have you say “YES”. She likes to go back and forth like that and laughs so hard!

She also enjoys “quizzing” with her books. She points to pictures in the book and wants you to name the item or character. She absolutely loves that game and gets quite irritated if you’re across the room and she’s pointing at a picture and you don’t name what it is! She is doing really well at finding the objects in the books—so that is good. She knows the names of all of the Sesame Street characters and lots of everyday objects and animals in the books. We’re working on getting her to say the names herself, but that has been a pretty slow process. She really looks at your mouth and face when you say words, but just can’t seem to get the word out. I keep praying that her expressive speech will come along sooner rather than later. But, she does have her own way of telling you what she wants—that pointer finger of hers can get pretty bossy!

We have also attempted to start the potty training process. I think this is going to be quite challenging! She can’t say “potty” but she knows what you’re talking about if you ask her if she has to go. We bought a little seat for the toilet for her to sit on. She has actually gone a couple of times, and gets SO excited when she does! But I’m not really sure she really gets what is going on. We decided we’re just going to take it slow and give her time to get the idea of what it all means. She is so funny though when she’s sitting on the seat. The minute she gets up there she yells “BOOK”. So we have a pile of books on the floor for her to look at while she’s sitting there.

We went to “Breakfast with Santa” last weekend and to our absolute amazement she LOVED Santa!! She went right up on his lap without any tears or hesitation! In fact, she kept trying to climb back up on the stage where Santa was when other kids were getting their picture taken and actually cried when we said no.

Medically, Mary is doing pretty well. We went to the Ear, Nose and Throat doctor a couple of weeks ago, and got really good news. She didn’t have any fluid or infection in either ear and passed the hearing test. So, luckily, no tubes for now. But, if she has 2-3 ear infections in a row this winter then we’re supposed to call and just schedule them to be put in.

Last week we went to see the eye doctor. This (just as the ENT appt) proved to be a very stressful appointment. Let me just tell you that Mary DOES NOT like her person to be messed with. She was hysterical the whole time he tried to examine her eyes. I have no clue how he even got a prescription. Of course they had to dilate her eyes so we were there for over an hour and a half. Her prescription has changed quite a bit since her last appt which was last March. At that time she was mainly far sighted. Now she is near sighted in both eyes in addition to the astigmatism which has unfortunately gotten worse. Also, he is going to watch her right eye as it seems that she may be neglecting it a bit. Basically, she has a mild lazy eye on the right side. We have to back in four months to get it rechecked. If it is any worse, she may need to wear a patch to force her to use that eye. I just pray that we don’t have to do this, as I’m sure using an eye patch will not go over well with Mary! The other good news we got is that she doesn’t have any tubers in either eye! We ordered her new glasses since the other pair she had have been completely broken for the past month and since her prescription has changed so much. We get to go pick those up tomorrow!

Finally, as far the seizures go, she continues to have a few mild ones each day. We increased one of her medications a couple of weeks ago, but unfortunately this didn’t seem to make much of a difference. I talked to Carol at Dr. Frost’s office the other day to see what we can do next. She explained that additional surgery is not an option. They took out all of the tissue they could—if they had taken any more, she would have a severe facial droop and possibly no function at all in her right arm. So, since the medications also seem to be failing to stop these seizures, the next step would possibly be what is called Vagus Nerve Stimulation Therapy or VNS. This device is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device something like a pacemaker. The device is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

I am waiting to hear back from Carol about this—it is encouraging that we at least have another option to get these seizures under control. It is so frustrating to watch her continue to have these after all that she has been through. In addition, it would be so great to be able to maybe get her off some of the 4 medications that she’s on!

Ok, well I think I’ve rambled enough. Thanks again for checking on Mary! We wish everyone a safe, happy and blessed Christmas season.
Lots of Love,
Jim, Eileen and Mary

Wednesday, October 19, 2005 9:10 PM CDT

Hello! Thanks for stopping by! We have had a pretty busy last few weeks! We have definitely been enjoying the wonderful October weather! Unfortunately it seems those nice warm days are about to end soon! : (

Mary has been doing well. Last Thursday we went to visit Dr. Frost to check in on things. I don't know what the deal was, but Mary didn't cry at all! She sat on Carol's lap and even threw a little super ball back and forth to Dr. Frost! None of us could believe it because the last time we went there she cried the entire time.

Anyway, he thought that she looked great. We are going to leave her meds the same for now, but we will start to reduce the Topamax after the holidays so hopefully she'll be off of it by summer. It would be so nice to avoid the non- sweating issues that it causes. Mary continues to have maybe one or two very mild seizures each day. I asked Dr. Frost how he thought that these were affecting her development--he said that the affect is minimal if at all. He said that since she is progressing that is a great sign. He said that we have to weigh the seizures to the side effects of the meds. Sometimes the meds can cause more development issues than the seizures themselves. We certainly don't want her to be so doped up on meds that she can't learn. So, all in all it was a good appointment.

Then last Friday we went to the ENT doctor to talk about all of her ear infections. He said that she does have fluid in both ears but they aren't infected at this time. So, what we are going to do is go back in a month and if the fluid is still there, or if she gets another infection in the meantime, we will definitely just schedule the ear tubes. I really just want to get the tubes put back in. You can tell that her ears are bothering her because she'll bat at them fairly often. So, I'll keep you updated!

Mary continues to love both school and daycare! She is really learning to follow directions and seems to understand so much. You can ask her to bring an object to someone and she will do it. Another fun thing she is doing is getting up on the step stool in front of the bathroom sink all by herself! If we are in her bedroom I can say to her "go to the bathroom and get up on your stool" and she'll actually do it!! She is SO proud of herself! Now if we could just get her potty trained...

She is just so funny--she has been on this kick of pointing out to everyone that I'm her mommy. Even when Jim gets home from work she'll point to me and say "mommy". She'll point this out to anyone and everyone we meet in the course of our day. She'll usually say "hi" first and then point to me and say "mommy". It's so cute!

We've kind of gotten her into a bad habit of looking at a book while we feed her dinner. It sometimes helps to distract her so that we can get the food in her mouth. So now before she'll eat she'll say over and over "book" and just demands that we get her several different ones to have with her meal! She's a girl who knows what she wants!

She continues to enjoy playing outside and going to the park with cousins Tommy and baby Anna. Two weeks ago we went to the pumpkin patch/farm nearby and she just LOVED feeding the goats (see the pics in the photo section). They also had a cow there and we told her to look at it and she just says "moo". She just loved seeing all of the animals and wasn't afraid at all! She also picked out both of our pumpkins and was so excited about them!

Thanks again for checking on Mary! We really appreciate all of the prayers and support.

Love, Eileen

Wednesday, October 19, 2005 9:10 PM CDT

Wednesday, October 5, 2005 8:54 PM CDT

Hello!

I really apologize for the long delay between updates. We've had some computer issues which was part of the problem. But, now we're back up and running so I guess I have no excuses anymore! We have great news that baby Anna arrived on 9/16! She is doing great! Jenny's blood pressure has remained under control and she actually has started to reduce the dose of one of the meds. We feel so blessed that both Anna and Jenny are healthy!

Mary has been doing great. She is one busy girl though! She loves school at the early childhood center. The teacher is fabulous and so are all of the therapists. We had her IEP meeting (Individualized Education Plan) a couple of weeks ago and it went really well. Mary will receive OT, PT and Speech each week while she is at school.

We feel so lucky to be part of such a great school district. I'm actually able to leave her there for her class and she handles it really well. She does ask for "mommy" quite often so the teacher had an idea to take a picture of me and her so that she could look at it when she asks for me. It is so cute--she carries this picture around with her there. They keep her really busy while she's there so I think that helps. They sing songs, read books, and do art projects. She comes home everyday with a little art project and I just love that! It is so exciting to get there and have them show me what she has done all by herself! It gives me so much hope when I see that.

We are officially done with Gillette for the school year. I totally love them there, but it will be nice to take a break from all of the running around. Her therapists and Jim and I agreed that the school would be providing sufficient therapy for her. But, she will go back for the summer because the school will have limited services during that time.

Music therapy is going great too! I'm now able to hide out on Beth's stairs and Mary will stay in the room by herself without crying. She really likes the therapist and is starting to respond to all of the techniques that Beth does. Beth is using an instrument called a Cabasa which is basically this rolling thing with beads on it and makes a shshsh noise. We roll this up and down her arms to help de-sensitize them. The reason for that is that Mary is VERY defensive about anyone touching her hands and arms and helping her to do things. This instrument is helping to get the nerves so that they aren't so sensitive to touch. Mary actually loves the feel of the beads which helps alot--I actually ordered two of these to work on at home.

Mary has started saying "no" which is really cool. I'll say to her "Let's go into the kitchen" and she'll look at me and smile and say "no"! It is so funny because it's like she is teasing me with it. She really has a great sense of humor!

We go see Dr. Frost next Thursday. We added a new seizure drug that was just very recently released by the FDA. I'm afraid to say it out loud, but it does seem to be helping. She was having 2-3 seizures per day prior to starting that drug, but now seems to be down to 1 or 2. Hopefully Dr. Frost will allow us to start getting her off one of the other three drugs that she is on. I hate having her on so many meds!

Next Friday, we get to go see the ENT doctor to get her evaluated to get new ear tubes put in. Mary has had several ear infections since March and the poor thing has been so miserable with them. We went to the pediatrician last week and she recommended that we go back to the ENT. Mary had tubes put in 2 yrs ago, but I think one of them has fallen out since then. So, I'll keep you updated on that! It is always something!

I also wanted to add this poem that I found on another kiddo's caringbridge site. I often sit and wonder what is going to happen to Mary and I pray to God to take away her seizures and help her to talk and do everything that a typical 3 year old can do. Somedays it is very hard to see the great differences between Mary and other 3 yr olds. I love Mary SO much the way she is, but sometimes I can't help but wish that God would just cure her. This poem really made me think about that wish:

Wait
author unknown

Desperately, helplessly, longingly, I cried:
Quietly, patiently, lovingly God replied.
I pled and I wept for a clue to my fate, and the Master so gently said, "Child you must wait."
"Wait? You say, wait!" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By Faith, I have asked, and am claiming your Word.
My future and all to which I can relate hangs in the balance, and YOU tell me to WAIT?!
I'm needing a 'yes', a go-ahead sign, or even a 'no' to which I can resign.
And Lord, You promised that if we believe we need but to ask, and we shall receive.
And Lord, I've been asking, and this is my cry:
I'm weary of asking! I need a reply!
Then quietly, softly, I learned of my fate as my Master replied once again, "You must wait."
So, I slumped in my chair, defeated and taut and grumbled to God, "So, I'm waiting....for what?!"
He seemed, then, to kneel, and His eyes wept with mine,
And he tenderly said, "I could give you a sign. I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.
All you seek, I could give, and pleased you would be.
You would have what you want~~~~But, you wouldn't know Me.
You'd not know the depth of My love for each saint;
You'd not know the power that I give to the faint;
You'd not learn to see through the clouds of despair;
You'd not learn to trust just by knowing I'm there;
You'd not know the joy of resting in Me
When darkness and silence were all you could see.
You'd never experience that fullness of love as the peace of MY Spirit descends like a dove;
You'd know that I give and I save....(for a start),
But you'd not know the depth of the beat of My heart.
The glow of My comfort late into the night,
The faith that I give when you walk without sight,
The depth that's beyond getting just what you asked
of an infinite God, who makes what you have LAST.
You'd never know, should your pain quickly flee,
What it means that "My grace is sufficient for Thee."
Yes, your dreams for your loved one overnight would come true,
But oh, the loss!!! If you lost what I'm doing in you!!
So, be silent, My Child, and in time you will see
That the greatest of gifts is to get to know Me.
And though oft' may My answers seem terribly late,
My most precious answer of all is still, "WAIT...."

Thanks for checking in on us!
Love, Eileen

Tuesday, September 13, 2005 10:38 PM CDT

Hello!

Mary had her first day of school today! Normally we have an ECFE class on Tuesdays, but that doesn't start until next week. So, it was just her and one other little boy in the class today. I have to say that she did pretty well! She had a couple of mini crying spells but they resolved fairly quickly. I just love her teacher and the para's that she has. They are so kind and I got so excited thinking about all that she is going to learn there. Today the OT came in and worked with her quite a bit which was great. Mary absolutely LOVES the OT and gets a huge smile on her face when she walks in the room. I ended up staying for the entire time--I just couldn't leave. I promised them though that I won't be staying everyday (even though it will be hard to leave! The teacher was so understanding and said that I could stay as long as I wanted! I just felt like I was kind of a distraction because she kept looking for me and saying "mommy".

The activities that they do in the class are fairly similiar to what is typically done in preschool. They sang songs, had books read to them, and played in the "motor" room. This is a room where they have trikes and balls and more physical toys that they can use to work with the kids. They also had snack time and potty time! We brought Mary into the bathroom to change her and the teacher thought we should try and put her on the potty. So, they sat her on it and boy, that didn't go over well at all! I think it felt cold on her little rear-end!

We ended up leaving about 15 minutes early, which they all told me was pretty good for her first day! Thursday and Friday may be more exciting for her because there will be a total of 5-6 kids in the class on those days.

After we got home from "school" Mary headed straight to bed for about 1.5 hrs. We then had to quick eat and head off to Music Therapy at 3:30. She is doing so well there--no tears at all! Now that she knows what to expect when she goes there I think it's ok in her mind.

I also talked to Carol and Dr. Frost's office today. We've been concerned about the tremors that Mary has been having--which is due to the increase in the Lamictal. I wanted to know if this was a side-effect that would go away with time, or not. Unfortunately it does not go away so we have to back down on the dose of this drug. We are going back to 75mg twice per day since she didn't have this issue on that dose. We also will likely be starting Mary on a new seizure drug that was just released. It is called Pregabalin and the studies that are out there seem to indicate that people had good luck reducing partial seizures with it--although haven't I heard that story before with other drugs??? Anyway, it's worth a shot and then if that seems to be working we can hopefully get off of Topamax some time soon. I really hate the thought of her being on 4 seizure drugs, but we have to find out if this new drug will work. She had 2 seizures today that I saw, which isn't too bad.

Thanks so much for checking in on us! Baby Anna will be arriving this Friday morning via C-section at 7:15 AM!! We are all SO excited and can't wait to finally meet her!
Lots of love,
Eileen

Sunday, September 11, 2005 9:39 PM CDT

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

The words above are what I am trying to live by each day--especially the part that says "Trusting that He will make all things right if I surrender to His Will." Even though it is very difficult, I am trying to lean on God and trust that he will take care of my Mary. She had 3 seizures today that we saw--and for some reason it really upset me. It is weird how sometimes I can just let it go when I see her having one, and then other times watching them is so painful that I feel like I'm really on the verge of losing it.

I know that it is totally useless to think and say this, but Mary having TS is just SO unfair. This shouldn't of happened to MY baby. I of course wouldn't wish any illness on anyone or any child, but sometimes I just get so angry that this happened. Why us?? Why Mary?? It is just wrong. Ok, I feel better now that I've had my mini-breakdown.

I'll update this week and let you know how Mary's school goes--she starts on Tuesday! She has a brand new Hello Kitty backpack to carry all of her supplies.

Thanks for checking in on us--we really appreciate all of your kindness and prayers.
Love, Eileen

Saturday, September 10, 2005 8:30 PM CDT

Hello!

I hope that everyone's weekend is going well. We went to Mary's open house for school on Thursday and we are so excited! Mary's special education teacher is just wonderful! We also met with the OT and Speech therapists as well. We knew both of them from this past summer, but it was nice to reconnect again. Mary walked right into the classroom without any hesitation! She was so funny. She was checking stuff out and then would just walk right out the door and down the hallway. Jim was doing most of the chasing while I chit-chatted with her speech therapist!

Well, the stupid seizures just don't want to stop. Yesterday she had 3-4, and today she had 3 that I saw. It seems that sometimes they come on when she is excited. Mary spent the afternoon with my parents and when we got there she got really excited and then had a seizure. She is alert during her seizures, but you can definitely tell she is not all there. It lasted longer than normal, probably about a minute. I talked to Carol at Dr. Frost's office last week and we are going to continue to increase the Lamictal. One side affect of this drug can be tremors and it seems like Mary may have this. Her hand has been shaking a little bit--Carol had warned me to watch for this. I don't think it is dangerous but if it continues I think I will call and let them know. In 2 weeks we will go and have her blood drawn so that they can check the levels in her system. We need to make sure that they are at a therapeutic level and not too low or too high.

Carol also told me that a new anti-seizure drug has been released and this may be an option for Mary. We see Dr. Frost again on October 13th, so we'll find out more then.

Lots of love,
Jim, Eileen and Mary

Thursday, September 8, 2005 8:44 PM CDT

Hello!

Thanks for checking in on Mary! Things have been going pretty well this past week. I ended up calling Dr. Frost's office on Wednesday because Mary has been continuing to have 2-3 seizures per day. We are going to up the Lamictal again and see what happens. Hopefully this will do the trick. I don't want to jinx anything by saying this, but I didn't see an seizures today! We'll see how things go tomorrow.

Tonight we went to an open house for the Early Childhood Special Education program that Mary is going to be starting next Tuesday. We are SO excited for her to start her program. She will be going to school on Tuesdays, Thursdays and Fridays from 10:30 to 1:00. During that time she will also receive Occupational, Speech and hopefully Physical Therapy. The teachers and therapists are so wonderful, and we feel so blessed to have them working with Mary. Next Thursday we have what is called her IEP meeting. This stands for "Individualized Education Plan". This will outline Mary's goals for the next year and also indicate exactly what services she will receive throughout the school year.

Mary did a great job this week at Music Therapy too! The therapist got her using her right arm/hand quite a bit and thank goodness there were no tears at all throughout the session! We also got Mary's haircut this week. It looks so cute! Of course she didn't appreciate her haircut at all and I think that Kid's Hair should win a medal or something for only taking about 5 minutes to finish the cut!

Finally, baby Anna continues to hold out on us! Jenny went to the doctor today and her blood pressure and everything else looked good. Most likely sweet Anna will be making her appearance on the scheduled C-section date of September 16th!

Take care everyone! Please continue to send prayers our way for Mary's seizures to stop! Thanks and we love you!
Jim, Eileen and Mary

Monday, August 29, 2005 10:25 PM CDT

Hello!

Nothing too new to report here--Jenny is still on bedrest and we are still waiting to meet baby Anna. Her blood pressure seems to have leveled off a bit, so we may have to wait another couple of weeks!

I'm afraid to say it outloud, but Mary's seizures are definitely better. We increased the Lamictal to 75mg twice per day this past Friday. Yesterday she had 2-3 seizures and today had only 1 that I saw. She may have had some that I missed, but I usually see more than 1 each day.

Mary continues to do well in her therapies. Last Wed. Jim stayed home from work and took her to Music Therapy. (I had to go into work that day) She had the best session she has ever had! I guess Jim should be the one to take her from now on! She actually held the drum stick with her RIGHT hand and marched both of her feet on the drum.

We are going to be evaluating her therapies at Gillette in mid-September. We may be taking a break from Gillette for a while. I have mixed feelings about this because I feel such an attachment to them, but I have to admit it would be nice not to have to run there twice a week. The therapists just feel that what she will get from the school district may be enough for now. We would likely check in with them on a monthly basis for some guidance. So, I'll let you know what happens with that.

Mary had a blast today in pool therapy! Before we left the house she saw the bag that I usually bring all of her pool stuff in and she said "pool! pool! pool!" I was pretty suprised that she remembered that I only use that bag when she goes swimming.

Well, thanks for checking in! Keep those prayers coming!
Love, Jim, Eileen and Mary

Sunday, August 21, 2005 9:07 PM CDT

Hello!

Well, Mary has had a pretty good weekend. On Friday we went to my parent's house to spend time with Tommy and Auntie Jenny. As most of you know, Jenny (my sister) is due to have baby Anna via C-section on 9/16/05, but she may have an early arrival due to Jenny's up and down blood pressure. Jenny is now on strict bedrest until the baby is born. We'll keep you posted on her progress!

Seizure-wise Mary had a bad day on Friday. She had around 7-8 seizures which was very disappointing. I did talk to Carol at Dr. Frost's office and we are going to continue to increase the dosage of the Lamictal. If this increase does not help we may be heading back to the Epilepsy unit for a video EEG. This would allow them to find out where these seizures are coming from. We think that they are probably coming from tissue that they were not able to remove during the surgery because it was in an area of function. I asked Carol if there was any possibility of more surgery in the future? She wasn't too sure about that--I think the only way that would happen is if the seizures are coming from an area of non-function on the left side of the brain. During her surgery Mary had 4 tubers removed, but sometimes the seizure activity can jump around, so there is a chance it is now coming from another tuber. Also, if the seizures are coming from the right side of the brain I don't think they would touch that either--I don't exactly understand the reasoning behind that but they are just not doing surgery on both sides of the brain yet. We really think that the seizures are coming from the left side because they look exactly like they did prior to surgery.

On a good note, Mary definitely had less seizures today--I think there were less than five. Sometimes I get so frustrated I think I block them out of my mind! She has been having a blast outside with this beautiful weather! She loves to have rides in the wagon and laughs so hard when you go over the curb at the end of the driveway! We also had put her on her tricycle--we have velcro on the pedals to keep her feet on them and she has so much fun. It can be a little hard on the person pushing her's back--but to see her laugh makes it all worth it! And of course, she could swing all day long if we let her, so that's always at the top of her list!

We also added a supplement called Melatonin to help Mary fall asleep at night. It is completely natural and helps you fall into a deeper sleep. Lamictal is a stimulant, so in the past few weeks she has had a hard time settling down to go to bed. We started her on 1.5 mg of it on Friday and let me just say that it is awesome!! She fell asleep no problem, but then did wake up around 3AM for a little while. I feel kind of guilty giving this to her, because she is on so many meds already, but Carol reassurred me that it is totally safe.

Thanks so much for checking in. Before I end, we have a few prayer requests:

1. Please pray for Mary that her seizures stop.
2. Please pray that baby Anna arrives healthy and that Jenny's blood pressure remains under control.
3. Please pray for our TS friends--Jessi and Kylie. Jessi is doing great with her development and her new therapy program! Kylie hasn't had any seizures since last week, so keep those prayers coming that they NEVER return! Both of these kiddos and their parents are so special to us. They have been such a wonderful source of support to us and we are so grateful!
4. Please pray for our non-TS friend Zoey. She has been doing great and is finally at home. Thankfully she has been seizure free since last week too and for that we are SO HAPPY!! She is a beautiful girl with a wonderful family and we pray that this good health and lack of seizures continues forever.

I'll update again soon!

Lots of love,
Jim, Eileen and Mary

Monday, August 15, 2005 9:58 PM CDT

Hello!

****We have new pictures in the photo section!!! Also, be sure to check out www.jimandeileen.com!! We have videos of Mary walking and a beautiful dedication video that Mary’s Auntie Jenny did for her.

Thanks so much for checking in with our Mary. I have not been good about updating this site like I had planned. We have been pretty busy this summer—mainly keeping up with our new walker! Mary continues to walk pretty much everywhere and just loves it! She can even walk barefoot in the grass! She is still not able to get up by herself in the middle of the floor, but we are working on that in physical therapy. Mary continues with her hectic therapy schedule. She is going to Gillette Children’s twice a week for OT, PT and Speech. She is also now going to Music Therapy, which has been a bit of a challenge. The therapist is awesome, but Mary has a very hard time adjusting to a new environment. She has cried a lot during the past few sessions, but we’re hoping that once she gets more comfortable with Beth (Music Therapist) and her home that she’ll come around. She receives this therapy once per week for 50 minutes at a time.

A lot of people have been asking what we do in Music Therapy and what it can do for Mary. Music Therapy is the use of music and music related strategies to assist or motivate a person towards specific nonmusical goals. A board certified music therapist provides these services. Mary has three goals right now that the therapist has outlined in her assessment: 1) To increase attention and social interaction skills from rarely done to more consistently done, 2) To increase functional fine and gross motor skills such as increasing bilateral use of hands, balance, strength and endurance from needing total assistance to becoming more independent, and 3) To increase functional communication, articulation and vocal production from rarely done to more consistently done. These goals will be attained by a couple of different strategies—Musical speech stimulation, rhythmic speech cueing, therapeutic singing and oral motor exercises through music will address communication and social goals. Musical entrainment will be used to help areas of self regulation. I’ll keep you updated on the progress we make!

The week of September 11 is a new beginning for Mary as far as her school related services go. She will begin going to the early childhood center instead of us having home visits from her therapists. She will go there on Tuesdays, Thursdays and Fridays. On Tuesdays I’ll go with her and it will be an ECFE class with all of the typical kids. On Thursday and Friday, she’ll have special education from 10:30 to 1:00 in a class of about five kids. This is basically going to be like a preschool class, but with a small ratio of teachers and para’s to kids. She will also receive OT and Speech while there as well. We are going to reduce her appointments at Gillette to one day a week, so when school starts she will go there on Thursday afternoon and get all three therapies a half hour each. Due to all of these changes with her school I’m switching my work schedule to Mondays and Wednesdays, so on those days she’ll continue to go to Kinderberry Hill. Speaking of daycare, it is going GREAT!! Her teachers are the absolute best and Mary hasn’t really cried there for a couple of months. I think it has definitely been the best decision for us and her.

Now that I’ve gone over all of the exciting and happy news, I also have to report that Mary continues to have seizures everyday. It is extremely frustrating and disappointing to see this. She is having between 1-5 per day and they look like her typical complex/simple partials. She gets that odd smile and her eyes look glassy. This is part of the reason I haven’t done an update lately. I have been feeling pretty depressed about it all. After having gone through the surgery it is so devastating to see her continue to have seizures everyday. We saw Dr. Frost a couple of weeks ago, and he thought she looked great, but we are still playing with meds to try and stop them. Right now she is on Topamax, Gabatril and Lamictal. We have been upping the Lamictal for the past few weeks hoping to get it to a therapeutic dose. I think that she can still go up to a higher dose, but I have to check in with Dr. Frost’s office tomorrow before doing anything else. Our goal would be to get the Lamictal to control her seizures so that we can start reducing the Topamax. We hate that drug as it has crappy side effects such as stopping people from sweating. You can imagine that during this summer’s heat wave we had to watch her constantly. Mary doesn’t sweat one drop—her face and body get hot and red so we have to make sure she doesn’t get too warm.

So, that is about it! Please keep Mary in your prayers—we are so grateful to have such wonderful family and friends. There is no way we could get through all this without you. Also, please keep Mary's other TS friends in your prayers--Kylie and Jessi. Kylie is also battling seizures and Jessi just began an in-home autism therapy program. There is also one non-TS friend that needs lots of prayers. Her name is Zoey and she is going to be having a hemispherectomy (removal of half of the brain) in the next couple of weeks. She has been fighting seizures since January.

Lots of love to you all!! Jim, Eileen and Mary

Tuesday, July 12, 2005 9:31 PM CDT

COOL, COOL, COOL!!!!

MARY IS WALKING!!!!

About a week ago, Mary and Mom and Dad were going to the mall. Before they left, Mary took a few steps between Mom and Dad but got cranky right away. We threw her into her car seat and away we go.

We ran into cousin Dave at Barnes and Noble where he works and Mary got bored and started doing her silent cry. We moved on to the Qwest Kiosk to find a phone. All of a sudden, Mary takes off walking. She did laps around the kiosk. Then she started taking off through the mall, around the Merry-Go-Round in the center of the mall. All in all she walked for about 15 minutes. She got a ride on the Merry-Go-Round for a reward, which terrified her, of course.

We then went back to Barnes and Noble to see Dave. As we left, she walked the full length of the store, right out the door out side, telling everyone “HI” on the way. It was the best day of our lives.

We want to thank all of Mary’s therapists, friends, family and teachers for the hard work put into making that day. July 5 will forever be Mary’s Walking Anniversary.

Hopefully we’ll have video on jimandeileen.com soon.

Hooray!!

Sunday, June 19, 2005 9:19 PM CDT

Hello!

First of all, we have NEW PICTURES in the photo section!!!

Thanks so much for stopping by! Mary had a good week. I haven't been keeping very good track of her seizures, but today I do know that she only had 2, but, of course those are the ones that we saw. They don't seem to tire her out too much and she bounces back right away. We think that they are "simple partial" seizures, so she is able to talk through them. The ones I saw today caused her to close both of her eyes a little bit, so that wasn't good. I am going to call Dr. Frost's office this week to see if we can increase the Lamictal. I also need to talk to them because I think that Mary is getting some small angiofibromas on her face. These are very common for kids who have TS. They kind of look like acne, but are blood vessels that have come together. I've heard through the grapevine that there is a new chemo-therapy type treatment for them so I have to ask about that. Anything that involves chemo scares me, but we'll have to see what they say. The ones Mary has on her face are pretty small and basically look like freckles, but we don't want them to get any worse. I'll let you know what I find out on that!

Jim's parent's arrived home safely from Europe last night and the three of us went to pick them up at the airport. Of course Mary was thrilled to see Grammy and Grampy! Judy and Bill stayed overnight and when Mary woke up it was Grammy who went in and played with her at 7:00AM!! We are so happy that they had a wonderful trip!

As far as the walking goes, Mary will not do it again. It almost seems as if her right leg is weaker for some reason. Whenever we try to get her to walk, or even if we just hold her right arm her leg kind of buckles inward. It is very frustrating. She is continuing to walk in the pool so that is good, but is refusing to even try again on land. I guess we'll just have to keep working on it!

This past Friday we had a fun playdate with Mary's friend Kylie. She is such a cutie!! Mary had fun tickling her toes while she was sleeping and saying "hi" to Maria about a thousand times. Kylie was just diagnosed with TS in February. We had a great time, and Maria and I really enjoyed being able to just talk about all of this TS crap. It is so nice to know that I'm not the only one with the feelings that I have! I feel so blessed to have met such wonderful people who, unfortunately, are dealing with the same stuff that we are.

We have a busy week ahead of us starting with speech therapy at the Early Childhood Center at 8:00AM tomorrow morning! I'm going to try and update at least once a week. We really appreciate you taking the time to check on Mary!

One last request I have is that you pray for another one of Mary's friends with TS. His name is Gavin and he had his grid placement last Thursday. We pray that everything continues to go smoothly and that he is able to get the resection done as soon as possible.

Thanks again for your support! And as always, please pray for NO seizures for our little Mary!
Lots of Love, Jim, Eileen and Mary

Saturday, June 11, 2005 11:22 PM CDT

Hello Everyone!

I'm going to try and update more often--thanks so much for checking in on our Mary! We had a busy day today with two graduation parties to attend. One was for our neighbor's high school graduation, and the other for my cousin's college graduation. Mary loved to see all of her aunties, uncles and cousins. She said "hi" to everyone, but unfortunately wouldn't show anyone how she can walk. We haven't been able to get her to do it again since she did it last week, but you can bet we'll keep trying!

Mary had a busy week last week with therapy at Gillette and at the early childhood center. This Wednesday I go to meet with her music therapist for an intake session to go over everything about Mary. We won't start her actual therapy until early July as the therapist is going on vacation and we both agreed it would be better not to start and then have her miss a couple of weeks.

Mary suprised both Jim and I today by saying ssss when you ask her what the snake says! I've been working on animal noises with her when we go through her books, and I had no idea that she had picked that one up! Yeah Mary!

Mary is still having a couple of seizures each day, which is upsetting. They are usually less than 30 seconds long, which isn't too bad--but of course we don't want ANY seizures. We increase the Lamictal again tomorrow so hopefully that will help. I'll give that increase a couple of weeks and if things don't change we'll call Dr. Frost again. I guess the dose that she'll be on as of tomorrow is still quite small, so we should have alot of room to move up. Lamictal is a good drug, in that it doesn't cause fatigue like some of the other anti-seizure drugs and can also help with cognitive function. So, we just pray that this one works.

On a good note, daycare is going great!! For the past two weeks Mary has done so well! She hardly cried at all and seems to be getting used to the schedule that they have. She really loves it there and so do we--the teachers are so loving. We are so happy that things are finally settling down.

Thanks again for visiting us!! Please pray for NO seizures for Mary!

Lots of love,
Jim, Eileen and Mary

Sunday, June 5, 2005 10:58 PM CDT

What an outstanding few weeks we are having.

First of all, the Step Forward to Cure TS walk-a-thon was a great success. There were 300 people there, including a large contingent for Mary’s Team. Mary’s Team earned more than $6000 in all, including over $1000 received after the date of the walk. Overall donations will total at least $45,000 when all is said and done. Thanks to all for you help and donations, especially SSG Holiday Station Store in Bloomer for the water, pop, chips and most notably, the Little Debbies. Thanks also to Jacobs Trading for matching fund of their employees and donating the prizes for Mary’s Team.

The biggest personal excitement is that Mary walked more than 50 feet by herself. Last night, she was making laps around the cul-de-sac in front of our house pushing her shopping cart. We decided to put it away and make one more lap with her just holding Mom’s hand. Mom let go and she took three steps by herself. Then she said, “Go to Daddy,” and Daddy wouldn’t let Mary grasp his hands. She just kept walking and walking and walking. It was amazing. She did the same thing twice more and then was too pooped out to continue. What a wonderful day. June 4, 2005. It will always be remembered. We know that if she can only increase her confidence, she will be walking alone all of the time. Mary turns 3 on the 23rd and we hope she will be a walker by then.

So, thanks for checking in.

Thursday, May 12, 2005 8:48 PM CDT

Hello again, hello!

Our little squirt Mary is growing up fast. Can you believe that in almost a month she will be three? She is blossoming into a beautiful young lady.

Mary has been having kind of a tough time at day care, though. Her normal routine is to have breakfast and take a nap mid morning. The day care folks want the kids to nap after lunch. Today we had to pick her up because she was so tired she was shaking. They finally put her down for a nap in the director’s office. It’s really frustrating because Mary just needs to nap in the morning but it doesn’t fit into the schedule there. We are really hoping she out grows it soon but we are not real optimistic.

Other than that, Mary has been saying happy, bye, and what really sounds like applejacks but we aren’t sure if we believe that’s what she’s trying to say. Her seizures are still happening a couple of times a day. We increased the Gabatril and they seem to last less long but we wan them gone. Wonderful Nurse Carol is going to check with Dr. frost to see if we can add a drug. We are hoping these are a temporary thing but I think we know better. It is making us second guess having the surgery when deep down we know it was the right thing to do.

The last thing we want to do is to remind you about the Walk-a-Thon that is on May 22. If you want to join us, give us a call. If you want to make a donation, check out the info at the top of this web page. We know everyone does what he or she can and we thank you all for everything.

Friday, May 6, 2005 8:48 PM CDT

Howdy Y’all:

Happy Mother’s Day to every Mother, Grandmother, Mother-in-Law, Step Mother, and all women. Mary is blessed to have a wonderful caring mother that lives her life for Mary. If she’s not toting her to therapy, they’re walking around the neighborhood or at Dr. appointments or over at Cousin Tommy’s house. Mary’s Grandmas are pretty cool, too. Both of them are so generous. Mary has learned more from her Grandmas than anyone else.

Speaking of learning, Mary is getting so close to walking. She took seven steps independently in the pool at therapy on Monday, twice. She has also learned a couple of new words: Happy and Mommy with a long E sound. She is also doing sign language for all done. She is such a little darling.

Mary continues to have seizures throughout the day. The severity is nowhere near what they were at one time but it is still frustrating after all we have been through. We are increasing the dose of one of the medications she is still on and we are hoping that works. We are confident the any seizure activity she is having is not slowing her down much. She is certainly not letting them affecting her, often begging for num nums or saying Hi while she having one. We are hopeful.

The big event this month is the TS Alliance Walk-a-Thon on the 22nd at Como Park in St. Paul. All of our family members and lots of our friends are either walking or collecting donations from their family, friends, kids’ school classes, at “Curves”, coworkers, etc. Last year, Mary’s team raised over $5000. Our goal this year is $6000. Mary has already gotten $750 herself so far. She’s such a charmer. You area all welcome to join us.

If you are interested in donating, please either send Mary a check made out to the TS Alliance:

Mary Hable
1395 Timberwolf Circle
Lino Lakes, MN 55038

Or you can use a credit card at www.justgiving.com/pfp/maryhable

Until next time. Enjoy Spring!!

Thursday, April 14, 2005 9:27 PM CDT

Hello!

Thanks for checking in with us! Today was a very important day--Mary had her first day of "school" at Kinderberry Hill! Daddy dropped her off this morning and Mary dove right into the toys and the excitement of her new classroom. She did really well until around 9:15 AM when she started to cry. Lately, her tired time has been the morning, so I was kind of expecting her to get cranky around then. The wonderful teachers were able to distract her and keep her going until about 11:30 AM and she fell asleep on her little cot for about an hour. Once she woke up she was in a great mood and played for the rest of the afternoon until I was able to pick her up after work. We are so happy that things went well, and we really believe that this is going to be a great experience for Mary. She is in a classroom with 9 other "typical" kids and 2 teachers, so the ratio is great. We're hoping that she will be inspired by all the other little ones and have a strong urge to learn to walk--especially since she recently weighed in at 36 lbs!

We went to see Dr. Frost yesterday and we were so encouraged by what he had to say. We are SO blessed to have him as Mary's doctor. As we had mentioned, Mary has been having seizures once or twice a day. Dr. Frost thinks that they are being caused by tissue that they were unable to remove during the surgery. They weren't able to remove every area that had seizure activity because they did not want to affect major functions such as speech and motor. He said that this tissue is probably still "irritable" and prone to causing seizures. But, he didn't think that they were severe enough to warrant an increase in her medication. We also asked him if he thought that Mary would be able to walk and talk. He said that her difficulty walking is definitely due to the weakness on her right side and that he "absolutely" expects her to walk independently. As far as talking, he said it is a great sign that she is saying words and that one day we'll be wishing that she would stop talking! So those things were really great to hear. We are going to break up her morning medication and divide it between breakfast and lunch, as we think the Topamax is what is causing her to be so tired in the morning. We hope that this will help out.

Mary has been having a great spring playing with her cousin Tommy and neighborhood pals out on her swingset. She LOVES to swing and once she sees it will practically run toward it.

Mary's friend Jessi had grid placement surgery today. Please say some extra prayers for her and her family during this difficult time. We certainly remember the stress of going through the surgery and staying at the hospital for such a long period of time. We hope to be able to visit them and help out as much as possible.

Thanks again for checking in on Mary! Love to all of you!

Jim, Eileen and Mary

Thursday, April 7, 2005 8:27 PM CDT

Hello Again. We are so sorry for not updating this page more often. Mom and Dad were out of the country last week while Mary visited both sets of Grandparents and her Cousin Tommy. Other than that it has been very busy with Easter and other trips and appointments for Mary and all kinds o stuff.

So, Mary had some seizures. As you can imagine it was a pretty tough thing to see after almost three months of being seizure free. About two weeks ago, Mary had two ear infections and that week she had five or so seizures. They were very minor and they did not look like her old TS seizures. She hasn’t had any in a couple weeks so we are hoping it was just her brain settling in to her pretty little head.

The big news is that Mary starts going to a day care center next Tuesday, Kinderberry Hill. Since Mary was six months old, she has been spending Tuesdays and Thursdays at her Grammy and Grampy’s house and of late her Auntie’s house while Mom and Dad worked. About two months ago, Mom and Dad decided Mary needed to be exposed to more kids and a new environment where she could have more organized education. K. Hill has a nurse on staff that can give her meds and they let Mom and Mary take a few trial runs for a couple of hours before we had to commit. Based on Mary’s development and the curriculum, we all decided that Mary should be in a class slightly younger age wise than she is. Mary’s ability to understand and verbal skills are probably ahead of her classmates but her physical development is probably behind them, specifically that she’s not walking and doesn’t have fine motors skills in her right hand. It is scary and exciting and comforting all at once. We just know that Mary is going to flourish and if it’s like everywhere else she goes, she is going to charm the pants off of those people.

So that’s the big news. Mary still has a lot of delay in her right hand but she is making progress. It is just really really slow. She is speaking more clearly with more words. In fact, for the first time in her life, Dad actually thought to himself, “This kid talks too much. She needs to be quiet for a while.” Her new favorite words are “Hi”, “Boo Bah” and of course “Num Num.” She is starting to use words as a form of communication such as Hi, Up, Num Num, Nigh Nigh, etc. It is just so cool. She is just the biggest hunk of joy in the whole world.

So thanks for checking in and we’ll try to update more often.

P.S. The TS Alliance Walk-a-Thon is on May 22. If you want to walk or make a donation, let us know.

Thursday, March 10, 2005 9:10 PM CST

Hi, Hi, Hi… Mary’s new favorite word. It is so cute. We are so sorry that we have not sent an update recently. It has been busy times. Mom and dad went to Vegas a couple of weeks ago. Mary spent the weekend with Grammy and Grampy Shelton. Mary has been going to her therapies and stuff as always. It just doesn’t end. That’s good, though. It helps us all to be busy.

We are elated to confirm that Mary has yet to have a seizure since Christmas day. It is simply amazing. The daily roller coaster of emotions has gone away. She seems so much more energetic and vibrant. She is continuing to develop at a more rapid pace than prior to surgery. You can just tell that she’s moving in the right direction. She is still not using her right hand as much as we would like but she is improving. She kinda uses it subconsciously. She does clap with it now, though.

Next week Dad goes to Washington to visit his Senators and Congress people to try and convince them to designate more funding for TS research. Each one of them will be getting a picture of Mary because we know that they can’t turn down such a cute little face.

That’s about it. Mary is so cool!! It is so fun being a parent now. Not that it wasn’t before but now that we don’t have seizures hanging over our heads it really rocks.

Thanks for stopping by. Love to all.

Thursday, February 17, 2005 7:58 PM CST

Hi Everyone.

It has been a while since we have updated because no news is good news.

Mary has still not had a seizure since Christmas day. She is battling the flu, however. She has been cranky, not eating much and things are going straight through her.

She is doing well, other than that. She is starting to learn sharing. She has started using more words. Her energy and attention span are improved. It is truly amazing.

One thing that we are still not taking for granted is that we go throughout the day without the crash of emotions as when Mary would have a seizures. The highs are high and the lows are high too, compared to what they used to be.

So, no news is good news. Check back soon for more of the same.

Monday, February 7, 2005 8:12 PM CST

Greetings to all. Thank you so much for the dedication you have to the interest of Mary and Tuberous Sclerosis. It has been over two months since Mary’s resection surgery and you are still stopping by the site to see how she is doing. That is so cool.

Well, there is one thing that we kind of add as an after thought that really needs to be celebrated. Mary has not had a seizure since Christmas. It is truly unbelievable. We thought she would never go this long without a seizure. It is such a relief. Our lives used to be a roller coaster everyday. One moment we would be having fun, laughing and playing and the next our emotions would come crashing down as we watched her have a seizure. Those days are over (knock wood). If you’re having a bad day, just think about that and I guarantee it will cheer you up! It really keeps things in perspective for us.

Along with the lack of seizures, Mary is progressing well. She often finds herself letting go of furniture and realizes she is actually standing by herself. That, of course, is too scary for her so she grabs on again but she can do it. She is just loving pool therapy. There are pictures in the photo album below. She is progressing very well but her right hand is still behind. We expect that to be at least three more months before she is back to where she was with that. She is a little chatterbox, too. Whenever you say the word puppy she says "ruff ruff" and she will also say "uh oh" if something falls on the floor. She gives kisses and will slap high five. It is so exciting to see!

So, as you can tell, we are having a lot of fun, enjoying our new little Mary! She sends hugs and kisses out to all of her family and friends! Thanks so much for taking the time to check on her progress.

Lots of love,
Jim, Eileen and Mary

Sunday, January 30, 2005 7:22 PM CST

Hello Again!

Mary has done really well this past week. We are so excited that all continues to go well! Still no seizures, and she is still weaning down off of the Vigabatrin. We made a visit to Mary’s Pediatric Ophthalmologist, Dr. Ballard, this past Friday. Mary made it quite clear that she was NOT happy to be there—basically by screaming the whole time! They had to dilate her eyes to check her prescription and to make sure that the Vigabatrin is having no effects on her retina. Thank goodness everything looked great! Her prescription has not changed and Dr. Ballard saw nothing to indicate any other problems. Luckily we don’t have to go back for six months—I’m sure everyone who was in the clinic that day is glad as well!

We do however need to get Mary in for a test called an Electro-retinography. This will likely be done at the Phillips Eye Institute. This test measures the electrical response of the eye’s light-sensitive cells. They will place electrodes on her cornea and the skin near the eye. This test should tell us if Mary has any visual field defects as a result of being on Vigabatrin. Luckily she WILL be sedated for this test. It will be scheduled in the very near future.

This past week Mary has proved to us that her favorite TV show is “Boobah”! She is now actually SAYING “Boobah” all the time! It is so cute to hear her say it—it is almost as if she is singing the theme song. She has also been giving kisses by leaning in and touching her lips to yours. It is just so fun to see her starting to understand things.

This past week during her session with Vivian, her Special Education Teacher, Mary did such a great job I just have to share. Vivian would hold up two flash cards and ask Mary to find a certain object. Given these two choices, she was able to pick out a fish, bunny, book, puppy, keys, bear, ball, comb, telephone, bike and shirt!! GO MARY!!

Today was a really nice day. Mary’s Grammy and Grampy Hable came to visit, along with her cousins Addie and Amanda and two of her aunties, Laurie and Amy. We all had such a fun time eating, playing and laughing. Mary was up the entire time and enjoyed every minute!! We are so blessed to have such a wonderful and supportive family.

Thanks again for checking in and we hope you all have a wonderful week!

Love,
Jim, Eileen and Mary

Sunday, January 23, 2005 10:17 PM CST

Hello Again! We are very pleased to update that Mary is doing great! She took two steps by herself last week before she could realize what she was doing. She will let go of the furniture she hangs onto to stand no hands sometimes, too. Considering her physical condition immediately following surgery, we thought it would be a long time for her to get back to where she was, much less advance so quickly. Her right hand is almost back to where it was. She is crawling on it and uses it if she’s not thinking about it. She is full of energy and happiness. She seems to be talking more, too—one of her new favorite words is “uh-oh”.

Yesterday, we had the pleasure to attend the reception kicking off the TS Clinic Without Walls. Dr. Frost and a friend of his who is a urologist, who’s son has TS, have been working on gathering specialists in all fields that treat TS patients to create a network that can be centrally managed to best serve the TS community. They have assembled Neurologists, Urologists, Cardiologists, Dermatologists, Neuro Surgeon, Ophthalmologists, Child Psychologists and Geneticists as part of their group. They hope to add a Developmental Pediatrician soon. Since TS affects so many different parts of the body, it is vital to have a specialist in many areas that have knowledge of TS. Most primary care physicians know very little, if anything, about TS. Therefore, they may not be the best source to recommend doctors to take care of TS patients. In fact, many people go misdiagnosed for long periods of time due to lack of awareness. The Clinic Without Walls will provide one stop shopping for all of your TS needs. They will make an appointment with any of the specialists, even if their clinic is not accepting new patients. There will be free flow of information regarding patients that will be used to help build a national database. This database will hopefully help show trends and provide information that will one day lead to a cure for TS. Mary was the hit at the reception because everyone there knew that she was the most recent patient to have resection surgery. They were all interested in hearing about her progress. Of course she didn’t disappoint--she was as charming as ever! (we’re a little biased).

We were really excited to be able to see nurse Carol, Dr. Frost and Dr. Dunn. Their expertise and care has changed our lives. It was great to be able to thank them again in person for all that they have done for us and especially Mary.

After the event, we went to the 7th floor to see our friend Jessi. Jessi is 21 months old and from Chippewa Falls, WI. She is having a video EEG in the very room that Mary spent 16 of her 18 days. One Wednesday, Jessi goes to Detroit for her pre-op PET scan. Just like Mary, surgery is the last resort for eliminating Jessi’s seizures. With luck, she will have surgery soon. She is having up to eight cluster seizures a day. Please keep Jessi and her family in your thoughts and prayers. Her web site is www.caringbridge.org/wi/jessiandreo. I know they would love to get the support we have received through ours.

So, life races on. Mary continues pool therapy and occupational therapy at Gillette with speech starting again soon. The ladies of the school district have been working with Mary for a few weeks and she just loves them. Keep thinking good thoughts for our little Maresy Belles. We’ll keep you updated. Oh, and how can we forget?? SHE HAS BEEN SEIZURE FREE SINCE CHRISTMAS!!!!!!!!!! YEAH!!!!!!!

Thanks again to everyone for your support—it means more than you know.

Love,
Jim and Eileen

Sunday, January 16, 2005 8:27 PM CST

Hello! Thanks so much for stopping to see how Mary is doing!

We are happy to report that Mary is doing GREAT! The best news is that she has been seizure free since Christmas! YEAH!! We are still having a hard time believing this! It is the longest period in her whole life that she has gone without having a seizure. We just feel so excited and blessed for this outcome—it is hard to put it into words.

She is still taking all of her anti-seizure medications, which are Topamax, Gabatril and Vigabatrin. We are currently weaning her off of Vigabatrin very slowly. She will remain on the other meds for at least a year (or possibly longer), but Vigabatrin can have vision side effects. So, we would like to get her off of this drug in the very near future. We are going to be scheduling a vision test called an ERG. This will test her peripheral vision to see if she is having any side effects of the Vigabatrin. For those of you who don’t know, Vigabatrin is an anti-seizure drug that is not FDA approved in the USA due to these vision issues. We have been ordering this drug from Amsterdam via mail. So, we will keep you updated. We pray that taking her off of this drug will have not cause any seizures to return.

Mary went to see her neuro-developmental pediatrician, Dr. Tervo, this past week. He is at Gillette Children’s Hospital and monitors her therapies and makes sure that her overall care is appropriate. Based upon our description of Mary’s abilities, he felt that her development was that of a 1.5 year old. While this is disappointing, since her chronological age is 2.5, we are also encouraged because her development continues to progress. He felt that she was doing very well, and also said that now that she is seizure free we should expect a surge in her development.

Dr. Tervo also recommended that Mary have an EKG, and an ultrasound of both her heart and kidneys. This is due to the fact that we know that Mary has two tubers on her heart, and we want to make sure that she doesn’t have any on her kidneys. She has not had these looked at since she was diagnosed. Tubers on the kidneys are a common occurrence for kids with TS, and we want to make sure that everything is ok. The tubers in the heart typically get smaller with time, so we feel pretty confident that there aren’t any problems there. But, we’d rather be safe than sorry, so we’re going to call Dr. Frost’s office (neurologist) to coordinate these appointments.

As far as her motor skills, Mary is back to getting into everything. She is crawling one (and sometimes two) handed, pulling herself up to stand and going up the stairs. ***We have new pictures in the “photo” section of this website so that you can see her in action.*** She has been SO energetic and happy lately. She also has a HUGE appetite. I don’t know if it is from all of her constant activity, but she asks for her “num-nums” all the time!

She is now continuing with all of her therapies, which include speech, occupational and physical therapy. In addition to that, her special education teacher sees her once per week as well. It has been so much fun watching her have fun and not having any seizures!

We would like to thank everyone again for all of your support and prayers. There is no way we would have made it through all of this without you. Thank you so much. We’ll update again soon! Love to you all!!

Eileen

Wednesday, December 29, 2004 10:07 PM CST

Howdy Y’all. It has been a while since I have written an update because things don’t seem as traumatic anymore. Mary has recovered fully from the flu and is making wonderful progress with her right arm. She started crawling up the stairs one handed and within a day she was already using her right wrist/arm to help. Today she was using her right arm to crawl every once in a while. We think she will be using it to crawl within a week. She is just amazing.

We have not seen anything resembling a seizure since Christmas day. Since the flu is gone and Mary’s strength is up, we think/hope her brain is resistant enough not to have any more post surgery seizures. We are very, very confident that she is not having any TS relate seizures. Yay!!!!

She must have grown three inches since Christmas, or so it seems. She is eating like she has grown. The little munchkin is constantly hungry. She has taken to either getting up for a midnight snack or getting up at 7:00 AM, having a very large breakfast and then going back to sleep for a couple of hours. She’s an active one.

Mary started pool therapy a couple of weeks ago, which she loves. Mom and Dad and Mary went to the Shoreview Community Center pool one night and swam. Mary just thinks it is so cool. She just squeals with delight. Mary also started having the school district come to our home and she did really well with all of her teachers. Mary also went to ECFE on Wednesday and loved seeing all of her little friends again.

She is such a little charmer. She just loves people, especially kids. Everywhere we go she brightens the room. I may be a little prejudice, though, as far as her cuteness goes.

This past few weeks we have had the opportunity to see a lot of you and we are very thankful for your inquiries and thoughts. We know that Mary’s success is due to the prayers and thoughts sent from all of you. Thanks. We’ll do this update thing again next week. With any luck, there will be nothing to update, except success, of course.

Monday, December 20, 2004 9:40 PM CST

And the fun continues. Our little Mary missed the hospital this past weekend. She convinced us that we should all go down to Children’s Saturday night and have a slumber party. While that sounds nice, it surely wasn’t.

Mary has been really crabby lately and we have been contributing it to the steroids. On Saturday, she got up late and had breakfast with Mom and ate all of her oatmeal. At about 2:00 she refused to eat lunch so Daddy decided to just sit with her and relax. Mary had her cute little head on Daddy’s chest and was snuggling in hard. She sat up, presumably to get more comfortable. Wrong!! She threw up everything in her stomach including breakfast, all over Daddy’s belly, lap and legs. It just kept on coming. Mom called the neurologist on call to see if we should be worried and she said it’s probably the flu. Give her fluids and just watch her. All seemed well. Mary was laying in bed with Mom about 7:00. She sat up and threw up whatever was left. Mom called the pediatrician who advised we go to the emergency room to play it safe. Well, Mary must be a preferred frequent customer because they took us in right away. They even interrupted another child’s registration to get Mary in. Her temperature was 102. Within two hours we had a blood test, a CT scan and were admitted. A major fear with brain and spine surgery is meningitis. We don’t want that. The CT scan proved there were no abnormalities in Mary’s head causing the nausea. The blood test wasn’t really accurate because the steroids taint it. So, we kept her over night for observation.

Dad ran home at 10:45 to get overnight stuff and returned around Midnight with dinner. The whole family stayed the night with no further incident. The next day the resident physician noted, “if Mary doesn’t throw up the rest of the day, you may go home this evening.” Apparently he doesn’t know who Mary is. Pat the Resource Nurse, who met Mary several times during the 18-day stay, happened to be the one to escort us from ER to the ward. She mentioned to the nurses on the 7th floor epilepsy unit that Mary was back. The nurses mentioned to Dr. Dunn, Mary’s neurosurgeon that Mary was in. Meanwhile, Mary’s pediatrician’s partner happened to be making round on call. Dr. Dunn and this very nice lady know each other and concluded that if Mary had meningitis, she wouldn’t be smiling at all, which she actually was, and she would be way to sore to put up the fight she was any time a nurse came in. They trumped the resident and sent us home at about 1:00. Dad was home in time to see the Vikings luck out a victory and the kick off of the Packer’s choke fest. Mary sat on Dad's lap and slept soundly with her kitty.

Mary never threw up again but got the runs today, a true indicator of the flu.

Well, the Christmas shopping didn’t get done again this weekend, nor did anything else around the house. Three more shopping days. We know that Mary’s smile is gift enough for everyone we know. We just would like to share our thanks to everyone as many ways as possible, especially during this joyous season.

Happy Holidays to all!! Everyone deserves joy and peace this year. We know you’ll have it.

Wednesday, December 15, 2004 9:46 PM CST

Today marked one of the few milestones left pertaining to Mary’s actual surgery. She got the staples out of her head. About half of her scar is already covered by hair. In no time, you won’t even be able to notice it. At 4:30 AM, Mary and Dad got up to give her breakfast because Mary couldn’t have food within eight hours of sedation. Mary loved it. Dad wasn’t so excited. Mary later went to the hospital and the moment the elevator doors from the parking ramp opened into the hospital she started screaming. She was sedated for the staple removal and she screamed all the way into unconsciousness. When she woke up, she woke up screaming. I think Mary may have developed an aversion to the medical arena. She got to visit the seventh floor where she spent 16 of 18 nights in the hospital. Mom was happy to see Kathy, Scott and Rona Lee who work up there. Mary screamed but I know deep down she was really happy to see them. Mom and Mary ran into Dr. Dunn in the hallway there, too. She stopped very briefly to check up on her special patient. Mary Kathleen Hable screamed loudly and Mary Beth Dunn.

Mary (Hable) has been grumpy and cranky which we know is a side affect of the steroid she is on. As we very slowly wean her off of it, she is less cranky. She is getting around about the same on her one arm and two legs that are currently up to speed. Her right arm continues to be very week but occasionally it seems she is using it for balance and support. Her grip gets stronger every day. The nurses today said that it might take up to six months for her to get back to where she was. We are just waiting till the first of the year to start Mary on high intensity therapy. We’re pretty sure she’ll scream as soon as she enters Gillette for that and when the ladies from the school district come to our house. I know that they will soon gain Mary’s trust. All of them have made such a difference in Mary’s life. I would name names but I would hate to miss anyone. All of you know who you are. Prior to Mary’s surgery, she had been going to Gillette for OT, PT and Speech twice a week and the school district was going out once a week for each, also. The progress Mary showed in those areas was unreal. The indirect benefit was that Mary got exposed to a lot of different adults and learned to not only trust them but also really love them. Don’t worry ladies, Mary still loves you, she just doesn’t trust you any more, yet.

So, we should also let you know that we think Mary has a few seizures in the last few days. We are very certain they are surgery related and not tuber related. We were told this would most likely happen. They don’t look exactly like her old seizures but we seen enough of Mary’s seizures to know what they will probably look like. We are not discouraged because we know that her seizure foci were completely removed during surgery, including the tubers and brain that were affected. This too will pass, I am sure.

So, keep up the holiday spirit. We are all very happy that Mary (and Mom and Dad) can enjoy this holiday season without the stress of upcoming surgery looming, which was the tentative plan. Merry Christmas, Happy belated Hanukah, Sweet Kwanzaa, Wacky Winter Solstice or what ever you celebrate this year. One thing to celebrate is that you have made it through another year with family and friends that love and care for you and truly wish you the best. We know the feeling.

Hazzah!!

Saturday, December 11, 2004 8:50 PM CST

It’s past Mary’s bedtime. I point that out because she is sitting on my lap, not sleeping. This post surgery stuff is not exactly charming. The Decadron, which is the steroid to aide healing and reduce swelling, makes Mary extremely moody. It’s actually more like ornery. She’ll be laughing along like life is great then she just starts crying. More like whining. She doesn’t sleep well, either. The biggest challenge for Mary and Mom and Dad is her right arm. Hold on a second, Mary wants to type:

mocccxccccccccccccc
Rc ttg gggbbbbnn zzzqwwww223333555 gt g ghn eefr

She gets a big kick out of the space bar. Anyway, Mary has taught herself how to crawl with one arm. She isn’t really fast and she has to take breaks but if she wants to go somewhere, she’s gonna. The thing that frustrates her is that she can’t be curious. She just wants to roam around the house and stand against furniture but she isn’t to that point yet. She gets frustrated and we get frustrated. I am please to say that her right side is showing signs of improvement. Her grip is getting stronger and she will sometimes push back if you are trying to lift her arm.

She had fun watching Dad put up the Christmas tree today and continues to be happy most of the time. She has become a finicky eater, too, but her appetite is huge. She was spoiled when she was in the hospital with all of the pudding and ice cream we gave her to get her fluid levels up.

Anyway, Mary gets her 43 staples out on Wednesday and we are hoping that will make her less uncomfortable. So keep up the good work.

By the way, still no seizures.

Wednesday, December 8, 2004 8:05 PM CST

It was a week ago this moment that Mary was rolled up to the PICU after surgery. I will never forget her sad little face, speckles of betadyn on her cheeks, head wrapped in a turban of gauze. She gave me that “help me” look. It made me melt. It was so great to have her awake and guzzling water, even taking her meds with applesauce. I knew at that moment that my little sweetheart was going to be just fine.

Every time I have written one of these updates, I have tried to do it in the third person, referring to Mommy and Daddy or trying to make it sound like it was from all of us. Today I am going to take the liberty of writing from me.

This past month has been very difficult for Mary, Eileen, our family, friends and even me. Through the visits, phone calls, word of mouth, and of course, the daily updates you’ve gotten, each one of you has been through it with us. It hit me the night after Mary’s resection surgery when I finally got home. I had been sitting down every night and been writing the update. That night, I read the guest book entries, and reread some from earlier and I realized how many people across the area, Midwest, country and even world were so concerned about my little girl’s health and well being. I know people sincerely kind at heart but the relationships to Mary of some of these people were like six degrees of separation. “A woman I work with knows Jim’s sister’s dentist’s pet groomer who told me about this web site…” I am by no means making light of this. I am just trying to illustrate how amazing it is that so many people who barely know of Mary’s existence have taken the time to be interested in her journey and send kind words, thoughts and prayers. That night I was overwhelmed. If you recall, I didn’t write much of an update. I was emotionally spent and everyone’s kind words were the last straw.

As of this moment, Mary’s site has had 3616 hits. That’s in less than a month, completely from word of mouth. That’s 3616 times that someone cared enough about Mary to check on her well being, to learn more about how she was doing, to see if all of us were doing OK. We were in the hospital for 18 nights. Just as you found solace in Mary’s web site, so we did too, except we were looking at the guest book, not the journal. I can’t say thank you enough. You have all provided strength for all of us.

So, on to Mary. She has been home for three days. She is not really liking the fact that because of her week arm she can’t crawl. We realize now how much of a go-getter she really was. She still splashes in the bath with her left hand and plays the piano if you put her on the bench but she can’t chase down the cats or curiously climb the stairs to wander into her bedroom. We have seen some signs of improvement but we know it is going to be very slow. Her speech and cognitive abilities have not been affected one bit. She still says, “num, num” when she’s hungry and she still knows the cow says, “MOO.”

Mary went to Gillette to visit her Occupational Therapist today. She decided that it was too early for Mary to start back. Since Mary is essentially not moving her hand and arm at all, the exercises she needs would best be done at home with people she knows. Mary was not happy to be there. She knows a hospital when she sees one. So, Eileen is taking two more weeks of Family Medical Leave through the end of the year. After the first of the year, we plan to start Gillette and the school district assistance back up. We know Mary will be back to where she was in no time and are confident walking is just around the corner.

Ya know, there’s one other thing that I seem to forget about. With all of the trauma of Mary’s surgery and her weakness and the staples in her head and trying to get back into the swing of things at home and at work, I lose sight of the real beauty of this entire exercise:

MARY HAS BEEN SEIZURE FREE FOR OVER A WEEK!!!

God Bless America!!! Hot Damn, Raise a Flag!! Pasta Fajool!! As my old man so often says, “you can’t enjoy caviar until you have tasted your share of cow manure.” He uses a different word for manure but I am trying to keep this rated PG. Well, it is time for Mary to gorge herself on caviar. Me too.

You are all special in your own way and we thank you from the bottoms of our hearts.

Love,

Jim

Monday, December 6, 2004 10:18 PM CST

Hi Everyone. We just wanted to announce that Mary came home today at about 2:30 PM. She is still a little cranky but she laughed when she saw the cats and she went straight for her favorite toy the Ball Popper. It's going to take some getting used to not having her crawl around because of her arm but we know that soon and very soon she will be back up to speed.

We'll keep you posted after we clean up, unpack all of the wonderful gifts you all have shared and rest a little.

Ciao!!

Sunday, December 5, 2004 9:46 PM CST

Ok, We’re ready to get out of here. This weekend was two very different days. Saturday, we had visitors all day, which was great, friends and relatives. Grammy and Grampy Hable came over and Mary loved that. Grammy blew bubbles and Grampy played the harmonica. Today, we had zero visitors. Mary had a bath and washed her hair and out popped her curls. We took Mary on a stroller ride around the hospitals. She got her IV taken out because she is taking plenty of fluids and all meds are oral. When she got it out of her foot, we put her into her real clothes and stood her up to see if she would walk a little. She managed it fairly OK but she will obviously need some physical therapy to get her back up to speed. We are very certain she will not be able to crawl for a while because her right arm is pretty much just limp.

When they took out the gyrus in front of the motor strip, they knew there would be risk of taking Mary’s learned function for her tongue, mouth and right hand and arm. In other words, she has full instinctive motion but everything she has learned needs to be relearned on the other side of her brain. The Doctors said this usually takes about six weeks with Occupational Therapy. Her mouth and tongue are already starting to work pretty much normally. Occasionally she’ll forget she has stuff in her right cheek but she was always a food storer. The way I look at it if she can’t crawl, maybe she’ll just decide to walk instead since her legs are fine. We’ll find out soon enough.

Dr. Dunn showed us Mary’s post op MRI the other day. You can see black voids of air where her tubers and brain were. It’s pretty amazing to compare the two sides of her brain now. The right side is just packed full of brain. The left side has spaces of air that will eventually get absorbed into spinal fluid and the space will fill in with brain. Her brain will not regenerate but it will just “loosen” into the space. The brain is like a bunch of big worms wound around each other. If you remove some of the worms, the rest just fill in the space and the gaps between them get bigger and fill with spinal fluid. It was freaky to see but we know that it was for sure the best thing to do.

The tubers and tissue that were removed from Mary’s head were sent to two different labs in Cincinnati and Detroit for research. Everyone is born with the two TS genes, TS1 and TS2, which work together to prevent protein growth that may cause tubers and tumors within organs. People with TS have one of the two genes mutated, either through heredity in about 1/3 of the cases or as a fluke, as in Mary’s case. Mary has a faulty TS2 gene. Mom and Dad have been tested and do not have TS. So the tissue is sent to these labs. Cincinnati is doing chemical analysis to determine if there is a correlation of types of tubers to the defective gene, TS1 or TS2. Detroit is performing further studies regarding the results of the PET scan she had in July and the characteristics of the tubers. It turns out that the most active tuber identified with her PET scan was not seizure causing. I am sure they are very interested as to why that is. Anyway, the more we learn, the more we realize that Mary is not the only one being helped by her surgery. Mary’s case is unique in many ways, specifically the number of tubers remove (4) from the number of area of her brain (3) considering her age (2 ½). It is uncommon for a child as young as Mary to have more than one tuber removed at a time, much less four. Dr. Dunn was the first to remove multiple tubers during a single surgery and is still one of the very few who will. Mary’s PET scan results compared to actual seizure foci are another area that is being looked at since they didn’t match. There was enough tissue to be sent to two different labs so the two labs now have tissue from a single patient that they can compare notes on. Usually the tissue goes one way or the other. Anyway, Mary is again proving to be special in every way.

So, we hope to come home tomorrow but are not holding our breaths. We’ll keep you updated throughout Mary’s rehabilitation, probably not every day but once or twice a week. We’ll let you know when she comes home and will keep this site open for a while.

Thanks to the hundreds of you who have followed Mary’s ordeal and think of here daily. You have made the difference.

Saturday, December 4, 2004 9:57 AM CST

Friday was a day of rest and recovery. Not just for Mary but for Mom and Dad and Grammies and Aunties. Mary is doing well. She had a whole pancake for Breakfast and a lot of milk. Her swelling is down and we unhooked her IV to let her be completely untethered. Hopefully today she'll be able to leave the room and go for a little stroller ride.

So, today we are going to just rest. We'll give you another update late today or early tomorrow when we have more energy. Thanks and enjoy your weekend.

Thursday, December 2, 2004 9:22 PM CST

Thank You, Thank You, Thank You!

To everyone for everything, especially your patience anxiously awaiting this particular journal entry. It’s gonna be a long one detailing yesterday’s and today’s event so I am warning you.

Firstly, Mary is doing great. She ate mashed potatoes and Cheerios and pudding tonight and is drinking lots of water. She smiled, beeped her Mom’s nose, found her Grammy’s hair and even said her favorite word “Baby” with her little cute husky, but raspy, voice. What a joy she is. So about yesterday.

At about 11:00 we took Mary down to surgery with Grammy and Aunty Jenny. As we arrived, so did Mary’s Great Uncle Jim. After about an hour of waiting because Dr. Dunn, the surgeon, was finishing a surgery at United, we got started. The anesthesiologist came in to explain what was going on and then Dr. Dunn and Dr. Penovich, one of the neurologists from the Minnesota Epilepsy Group, Dr. Frost’s Clinic, explained that they were going to take the grid out, resect two thirds of the area causing Mary’s seizures, test the third third for activity and if it is active resect that too and resect another area with two tubers that is constant firing but not creating seizures. Dad grabbed Mary and followed the surgeons into the operating room until Mary was under anesthesia and was whisked out of the room. The waiting began. As we waited we called Grammy Hable who was home sick with the flu and Grampy Shelton who is in Palm Desert golfing to give them an update.

About an hour later, Dr. Dunn and Dr. Penovich showed up and we were all shocked. As we sat and ate pizza and sandwiches from Cosetta they brought us unexpected news. As they undressed Mary’s head, they noticed a tiny amount of pus around one of the wires sticking through Mary’s head from the grid. This usually means there is an infection. While they deliberately put the wires through the scalp several inches from the incision and hole in the skull for this very reason, Dr. Dunn told us that she would not take any chances of the bone or brain getting infected so they would not be performing the resection as planned. Mary could end up with Meningitis or a bone infection that would be very, very bad. As one could imagine, the entire family was in shock. We had gone through all of this stuff with the surgery canceled originally, then given 36 hours notice before it was rescheduled and the grid in and late stim test without finding motor and delayed second surgery and all of the stuff that goes along with that. Dr. Dunn said, “Wild horses could not make me proceed because the risk is too bad.” She said it would be another six weeks until they would consider doing the resection surgery. They would take the grid out, do the further testing they wanted to and closed the wound. The good news, yeah right, was that Mary would not have to have the grid in again and would just have the resection surgery and the normal recovery. That is of course if she wasn’t sick when it was rescheduled.

So the Doctors went back in and the family called everyone to tell them the news. Luckily, two very wonderful people from Jim’s work showed up to wish us well at that time and the emotional backlash was lessened. Their arrival was perfect because it broke the mood and added strength to both Jim and Eileen. Thanks Jeanne and Dawn.

So we were under the impression that Mary would be out of surgery in another two hours, we would have normal recovery and be back in six weeks or so. About an hour later, both Doctors show up again. They explained that they found very little activity outside the grid area and would not have to perform much more resection that originally planned. Oh and by the way “we sent cultures to the lab and there was no organisms in the pus so they opened up the skull and it was crystal clear. They sent another sample from that area inside the scalp and if there are no organisms in that we are going to proceed with the resections.” SO much for the wild horses. We were told that the test would be back in five or ten minutes and they’d call out with the results and the plan.

So, the family called everyone again to tell them the news. By this time, Uncle Jim had left, Grampy Hable and Aunty Amy and Laurie had arrived. After about fifteen minutes we had heard nothing but realized there was no one from the hospital with us to answer the call if it came. After 45 minutes of sitting on pins and needles, we finally went to find someone and had to go all the way down a story to the ER to find a nurse. They called up to the OR and a nurse finally came in and said, “they called out about a half hour ago and told us that they were going ahead with the surgery. In fact, Dr. Dunn almost complete and will be closing soon.” Thanks for letting us know. And, we know better. There is no was the surgery is done.

So after about another hour plus, Dr. Penovich shows up with the pictures of Mary’s brain with and without the grid, some drawings and a specimen cup full of liquid and a chuck in the bottom of it. We had asked for pictures of the tubers. She did one better. She brought one out. Wow, that was very cool. Gross but cool. There is a blurry picture of it on jimandeileen.com. Dr. Penovich told us that the area where the seizure activity was needed to be fully resected but it went well. The biggest tuber that was always thought to be the seizure focus but had no activity was kinda just hanging there asking to be taken so Dr. Dunn took that one out too with very little affect on the brain. She was now working on the two on the lower part of Mary’s brain and would be done in about an hour and a half. As you can imagine, there was a sudden elation in the room. We were like a bunch of schoolgirls after one of us had their first kiss. It was just giddy.

So the phone calls went out again.

At about 7:15 PM, Dr. Dunn came out and told us the surgery went better than expected. Eileen asked her if we could have the grid and if she would wash Mary’s head. Dr. Dunn said she already had cleaned Mary’s hair. They share a name and hair color, kind of reddish and are both Irish so Mary Dunn thought of Mary Hable as a little version of herself. About a half hour later, Mary was wheeled out for all of us to see. Her color was good, she was sucking on her pacifier, resting peacefully. She looked better than when she went in.

Mary was whisked up to ICU where the family said their goodbyes. Within two hours she was drinking water and eating applesauce with her seizure meds. Mom and Dad feasted on Burger King and 10:15 PM and collapsed.

Mary rested peacefully throughout the night. At 6:45, ICU called Mom and Dad in the room they were sleeping in down the hall to tell them she would be moved back up to the seventh floor where she had spent the past two weeks. Mary went back to her old room and was greeted by all of the wonderful staff that she has met, the zoo of stuffed animal she has been given, the nursery of baby dolls she has received, flowers, balloons and best of all her Boo Bahs. Throughout the day she perked up, had an MRI and a good meal and is quickly on her way to being herself again.

So, there’s the story of the twelve hours from hell. They say what doesn’t kill you make you stronger. They don’t say anything about what makes you have a nervous breakdown, though. We lived and didn’t break down so we must be stronger. Mostly, Mary is stronger and we know she will have no more seizures. In the words of Dr. Dunn, “Mary is going to be perfect. Soon she will fly!”

Thursday, December 2, 2004 7:51 AM CST

Hi everyone. As far as we can tell, surgery was a big success. Mary had four tubers removed and some of the brain adjacent to these tubers. She was eating and drinking within a few hours and had a very restful night. She has movement in all areas but her right side is a little slow. We expected that and know it will bounce back to where it was and further. She was moved back up to the Pediatric Epilepsy ward at 7:00 AM today and that's where we are now. She has an MRI at 3:00 today for good measure.

So, I will write more about yesterday's roller coaster ride (surgery on, resection off, resection back on, etc.) later today when I have more time. Right now, we are just going to rest and enjoy our little peanut.

Thanks to everyone for all of your prayers and thoughts. Without you we could not have made it through this.

Wednesday, December 1, 2004 9:23 AM CST

So, Today’s the day, finally. Mom and dad met with Dr. Ritter from 8:00 PM to 9:30 PM last night to go over exactly what will be going on during Mary’s surgery. I will try to briefly explain it as well as I can.

During the stim studies, the Doctors could not find Mary’s motor strip. This usually means that it is not in an area covered by the grid and therefore can’t be stimulated. It does mean that they don’t know where her motor strip is, and if they can’t find it, they aren’t sure where it is. They do know where her sensory strip is, however. Almost always, the motor strip is just in front of the sensory strip. Let me back up a little and go through a little physiology and anatomy.

If you look at the brain, it looks like a bunch of hills and valleys. The hills are called gyrus. They usually run up and down on the top of the brain and front to back on the bottom of the brain. Each “strip” follows a gyrus. The brain is divided into hemispheres, each side controlling the motor for the other side of the body and other functions are located in various other places, for instance sight is usually in the back of the brain, language is usually in the left hemisphere, etc. In early childhood, the brain will often “rewire” itself to locate function wherever the brain has room. For instance, there is seizure activity where Mary’s expressive language would usually be. During the stim studies, the Doctors activated that area and Mary kept talking. If her language were there, she would have not been able to speak. So, the conclusion is that speech has moved to the other hemisphere. This may explain why Mary’s ability to speak is very delayed. There are two things that are set at birth, however, and they are sight and motor below the neck. That is why it is so important to find the motor strip. If you remove it inadvertently, it will paralyze an entire side of the body.

So, Mary has five gyrii that we are concerned about. The front three have seizure activity due to a tuber underneath them. The objective is to remove them with the tuber underneath to stop the seizures. The fifth gyrus is the sensory strip. We identified that by activating Mary’s thumb reflex electrically and detected where the brain “sensed” it. That means that the motor strip should be in the fourth gyrus. Here’s the kicker. It is not totally unheard of for some motor activity to be in the gyrus in front of the motor strip. This activity is usually of the “rewiring” type such as facial movement, tongue movement, etc. on one side of her head, of course. Removing the third gyrus that is active may result in loss of that function until the brain can move it to the other hemisphere that could take up to a year to regain where she is today. So the plan is to remove the first two gyrii and test to see if the third gyrus is still active. If it is, they will take it out. If it is not, they leave it in with the opportunity to remove it with further surgery if her seizures return from that area.

There are two other tubers that will be removed in the bottom of her brain that are constantly active but not causing physical seizures. They are very close together and on the same gyrus so they will remove the whole thing. This is pretty routine and low risk.

So, it is 9:30 and we are going to the surgery ward in about a half an hour. The priest was just here to perform anointing of the sick on Mary. Grammy Kate, Aunty Jenny and Grampy Bill will be joining us soon to wait this whole thing out. As expected we have mixed emotion about this whole thing, yea it’s finally here, crap I hope it goes well.

So, keep us in your thoughts today. Mary loves each of you in her own little way and knows that you are all pulling for her. Our little life light will come out shining brighter than ever. This we are sure of.

Tuesday, November 30, 2004 5:15 PM CST

Whew, what a long stressful couple of days. Sorry we have been delinquent with updates but it has been busy. Monday morning, Doctor Penovich came in to do Mary’s second stim study. She was going to crank up the current and make it longer to se if that would work. No dice. She went through the whole grid once then she turned it up a little more and went through it again. Mary didn’t budge. In fact, she fell asleep. It’s kinda funny that you can’t wipe her nose without her screaming at the top of her lungs but you can send electrical charges through the surface of her brain and she just falls asleep. So, Doctors Frost and Penovich met and told us that they would be discussing Mary’s case with the surgeon, Dr. Dunn, and their partners Dr. Ritter, who is the Doctor on rounds this month, and Dr. Dickens who performed the first stim study, in the surgical counsel Tuesday morning. At about noon, today, we were told Mary would be having surgery tomorrow at 11:00 AM and that a Doctor would be around to tell us more details. At about 2:30, Dr. Ritter came in and decided he was going to do one more stim pass. He was aided by the head EEG technician, the guy in charge. Dr. Ritter was bound and determined to find it. He cranked the stim current up as high as he could and for as long as he could, keeping a close eye for seizures. Mary just sat on Grammy’s lap and watched Boo Bah. She was unfazed, and of course did not respond. Dr. Ritter believes that the motor strip on Mary’s brain is above where the grid is placed.

The bottom line is that if they cannot identify where the motor strip, the part of Mary’s brain that makes her move, is, they cannot remove tubers in areas that it may be. There are two tubers that are “firing” constantly but are not quite powerful enough to manifest as seizures. They will be taking those out for sure. We will find out later tonight what exactly they are going to do about the motor strip.

The worst-case scenario is that Mary does not have the seizure-causing tuber removed and we continue to try new medications and methods for stopping her seizures. The best case is that they can remove the tuber causing the seizures and the two that are firing and seizures stop.

We will update the situation after we here tonight. Please think of our little Mary at 11:00 (Central time) tomorrow. At the very least, they will be removing the grid from her brain and repairing the hole in her head. She needs all of the prayers or good Karma or Mojo or whatever each of you sends to make it happen. Heck, we’d try chicken bones and grass skirts right now if we thought it could identify her motor strip. Anyway, think positive thoughts for Mary tomorrow and always. Thanks and we’ll keep you posted.

Monday, November 29, 2004 8:11 AM CST

Sunday was the first day of the second half of Mary’s adventure. Mary’s first stim test was performed. As expected, someone just popped their head into the room and said, “we’re gonna do a stim study today. We’ll be back in about ten minutes.” Just like that. No warning, no schedule, nothing. See ya in ten minutes. This obviously left us with mixed emotions. Great, they are finally starting these things, jeez, how about a little warning.

The stim study was quite anticlimactic. The EEG technicians took the wires from Mary’s pillowcase, plugged them into the Grass Stimulator and they were ready to roll. The Doctor came in and stuck little probes into holes that were connections to each electrode of the grid in Mary’s head. She would stick one in one hole and another in another hole to make a circuit. She had the ability to increase the current strength. She started out with electrodes that were far apart and worked her way to adjacent electrodes. Everyone was to look for any movement on Mary’s right side and face. This process took about 20-30 minutes. Final results: no stimulation. Great. This means they will have to increase the strength and duration of the current for the next study and hope that is strong enough to trigger motor function and not too strong to cause a seizure. We have increased the Topamax to help guard against seizures during this process. They must find Mary’s motor strip prior to removing any tubers. With any luck, we will have another stim study on Monday, maybe two, and have information for a Wednesday surgery. We aren’t holding our breath. We are very confident that surgery will be this week because all of the Doctors, including the surgeon, have an epilepsy conference out of town all of next week.

Other than the stim study, Mary had another up and down day. The dressing change performed at 11:30 PM Saturday by Zandra was a work of art. There was not slippage at all and we were hoping that it would last the 48 hours allowed between dressing changes. This process has been nothing but stress for everyone involved, especially Mary. The fewer we can have the better. Mary finally had to have that IV put back in. She didn’t have anywhere near to enough fluids yesterday so we had to give in. Jenny, the nurse form Short Stay that put in Mary’s first IV came up to do it. Because Mary’s first two IVs were in the big veins in her hand, the only ones left in her hands were smaller and because she was a little dehydrated; they were “flatter.” Jenny first tried the right hand and the vein “burst.” While trying the left hand, that vein “burst” right away. By this time, Mary and Jenny were very frustrated. Jenny is an awesome nurse, it just wasn’t her day. We felt so bad for her because we could tell she was so disappointed in herself. We let Mary settle down and Jenny sent Judy from Short Stay up to put it into her right arm which worked right away. Now Mary can’t bend her right elbow but she is getting good fluids. With any luck, she will be able to retain this IV until surgery.

So, other than that, Mary had lots of fun with cousins Tommy, Claire and Carolyn. She is such a fun little girl. The nurses are even allowed to play with her a little (Mary’s choice and no one else’s).

Mary is doing great, she is such a resilient little girl. She gains strength from all who visit her and send kind thoughts. Without people like you, she would be a lot less fortunate.

Sunday, November 28, 2004 8:12 AM CST

Snow, snow and more snow. At least it seemed that way. It snowed all day Saturday but not much of it stuck. The view outside Mary’s window was really pretty. By Sunday morning, there is about two inches on the ground in Lino Lakes.

Mary had a pretty good day on Saturday. Grammy stayed over night the night before and Grampy came and they had a lot of fun. Mary is required to consume 1000 CC of fluid in a day or she has to have her IV put back in. We are finding that to be a lot of fluid for our little girl. It’s way more than she would get at home. SO the struggle on Friday and Saturday was to get up to that 1000 CC mark. Both days she came up a little short but an exception was made. Saturday, we pretty much said, if you make us put an IV in, we will use our parental intervention and refuse it. We didn’t have to because the nurses called the Doctor who agreed she had had enough.

Mary has had several seizures and she has finally been deemed to have had enough. Sunday, she starts going back up on her Topamax so when they do a stim study, they don’t ignite a seizure. If that happens, the study is no good. The Doctor insinuated that her first Stim Study will be Sunday and that they may be able to get by with only two. We are still hoping for surgery by Wednesday, and we know Monday is no longer possible.

Mary is still a trouper. She is walking and crawling around the room as much as possible. We have brought some of her favorite toys down which she loves but are driving everyone else nuts. Mom and Dad are getting kind of claustrophobic, however. Thanks to Grammy and Aunty Jenny, Mom has had a couple of nights sleeping at home. All of the visitors and gifts have helped ease this pang. The nurses actually are a good distraction, also. We thought it would be very intrusive to have one in there 24/7. They are becoming part of the family. We are trying to get pictures of all of them for Mary’s scrapbook. Hopefully, if this goes well, we’ll never have to se them in that setting again.

So, keep the kind thoughts coming. We are sending them right back atcha. We are still overwhelmed by the response and affection shown in the guest book. We are over 2000 hits on the web site, too. Wow!! Thanks so much to every single one of you. Mary is so lucky to have her in your thoughts and prayers.

Saturday, November 27, 2004 8:43 AM CST

It’s a good thing we were in the hospital the day after Thanksgiving. If we weren’t we may have had to go do a ton of shopping therapy and spent way too much money. There’s always time and the Internet to do that.

It was another non-monumental day on the seventh floor of Children’s/United. The fourth Doctor we have seen is on rounds and she was as noncommittal about stim studies as the other three. “There is a possibility it could happen today or tomorrow.” We are not holding our breath. We have resigned ourselves that surgery will NOT be on Monday. We are holding out for Wednesday. We are confident it will be next week sometime.

Mary is pretty much back to being Mary. This is good and bad. She is so fun and it is so therapeutic for Mom and Dad and all who know her to have her smiling and laughing and talking and playing like she always has. She has a five-pound bag of wires attached to and in the top of her head, however. This does not make it easy for her to be as free as she wants. We are getting better at following her around keeping the wires slack. She had a lot of fun playing with the rice box that the nurses brought in. The cleaning lady wasn’t too please to have to clean up rice from everywhere.

This morning is one of change. There is snow on the ground for the first time this season. Mary has turned the corner to herself again. Mom and Dad have resigned themselves to the fact that surgery will not be Monday and are just grateful to be having this process done now instead of in January. The stim studies will happen when they happen.

Every minute of time with Mary is precious. Every heart she touches is warmed. She truly is a special little girl. She is the light of a lot of people’s lives.

Friday, November 26, 2004 7:53 AM CST

Thanksgiving Day actually felt like a holiday this year. We thought there would be no way that would happen. It really ended up being relaxing and at time even fun. Mary is back to her old self, talking and wanting to walk against furniture and pulling whatever she can off of shelves and throwing them. She is feeding herself, and wow has she been eating a lot. Not really more food, just more often. She kind of grazed all day, in the true Hable Thanksgiving tradition. She even warmed up to the nurses a little which was the biggest shock. Aunty Jenny stayed over the night before and Mom and Dad got some good rest. Jenny, I’m afraid did not. Mary went through three dressing changes on Jenny’s watch and one right after she left. Finally someone took the initiative to put Mary’s bandages in the netting that they put around the kids heads when they have an EEG. It really did the trick (we’ll try tot get some photos onto jimandeileen.com). That allowed Mary to move around free as a bird without anyone worrying about her pulling her dressing off. Grammy and Grampy Shelton stopped by and played for a while and that got Mary smiling and laughing. Aunty Wendy and uncle Steven brought cousins Adie and Amanda over with thanksgiving dinner. Wow was that good. Comfort food!!. Mary loved seeing the girls but ended up to involved with eating her Thanksgiving dinner by the end of the visit. It was great to see the four of them, especially the girls. After that, Mary and Mom took a long nap. They both looked so content.

Mary’s progress has been good, we guess. She had two more seizures yesterday but they aren’t “specific enough.” Apparently the medication is still masking the true focus of the seizures so we took her off of Topamax completely. She has been on Topamax since she was two months old. It is the one drug that we know for sure has worked to control her seizures. It is scary to take her off of it because we have been so protective to make sure she was always on it since we know it works. We have had four different Doctors give us four different opinions of what’s going on. They have all insinuated that Mary will probably not have enough seizures and therefore stim studies for surgery on Monday. We are confident that she will have surgery next week some time. We are just getting frustrated because we can’t get a schedule of anything out of the Doctors. Deep down we know that they are doing everything they can but it doesn’t make it any better. So we wait and take it day to day.

We hope you all had a happy Thanksgiving. We had a very nice one. Keep up the good thoughts for Mary.

Thursday, November 25, 2004 8:16 AM CST

Happy Thanksgiving!! Mary’s entire family have so much to be thankful for but most of all for Mary. She has been a real trouper through all of this and that has made it easier for all of us. Wednesday was not different. The morning started with a seizure, which is such a strange emotional experience. We have become so conditioned to seizure being evil and now we have to hope for them. Dr. Frost came by today and explained that the reason we haven’t had any stim studies yet is because they want Mary to have more seizures first. If she has more seizures, they will be able to better pinpoint the area to test and we may only need two stim studies, not three or more. That’s good because the staff is short handed with the holiday and stuff so stim studies are very hard to schedule. At least that’s what we are assuming. I must say, the communication from the Doctors isn’t real solid. The nurses insinuate that with the way they answer our questions, or more like don’t really answer our questions. We are still counting on surgery for Monday but won’t be surprised if it’s postponed.

Mary herself had a great day. Other than a couple of dressing changes, she was really happy. She spoke for the first time, going through her full repertoire of “baby”, “bubble”, “num-num”, and of course “Momma”. She was smiling and laughing a few times today. She had a second seizure at about 8:00 PM so we are hoping things will be moving along. Mary wanted to send you a Thanksgiving Message:

Dearest Family and Friends:

You have made me feel like such a special little girl. My Mommy and Daddy have read me all of the guest book entries from the web site and I am overwhelmed. I didn’t know there were that many people in the world, much less that know about me. Wow!! My Mommy and Daddy are going to have to build an addition onto our house for my new zoo of stuffed animals. I got a puppy, a wolf, several kitties, a hippo, bears, lots of Boo Bahs, an Elmo, a duck, a monkey, a Care Bear that’s bigger than I am and lots more. There will have to be a nursery in that addition, too, because I have my own set of septuplets. The flowers and balloons are really nice to look at. They are calming. I have an entire library of new books that I need to read now, too. My Mommy and Daddy are very grateful for the gifts they have gotten, too. Slippers, magazines, lots of food, games, calling cards, books, they are all so nice. All of this just proves that we have so much to be thankful for.

What I am most thankful for are the people of this world. The Nurses here have been unbelievable. Every one of them has been helpful to me and most importantly, to my Mommy and Daddy. My teachers from Gillette and the school district have come to see me here and that was so touching. Lots of my Mommy’s friends have come to make sure she is feeling good. We have gotten gifts and kind thoughts from family, friends, friends of family, family of friends, people my Mommy knows through the TS Alliance web site, from as far away as Michigan, Pennsylvania, California, France, the Czech Republic, all over. Both my Mommy and Daddy’s work have given tons of stuff to make me and them feel better.

The people I am most thankful for are my family. My Grammy and Aunty Jenny have stayed with me a night each so my Mommy could sleep in her own bed with our kitties. Grampy Shelton made me laugh for the first time. Grammy Hable came over and held me when I was hurting the most. Grampy Hable drove over two hours to see me for ten minutes. All of my Aunts and Uncles have been so good to me and my Mommy and Daddy. Cousin Tommy came to see me and today I get to see my cousins Adie and Amanda. You are all so special to me.

So, thanks to all of you on this day of thanks. I love every one of you in a special way and I would not be able to get through this without each one of you.

Love,

Mary

Well, Mary about says it all. Have a great holiday and we’ll keep you posted.

Tuesday, November 23, 2004 10:35 PM CST

Thank God for Grammies. Last night, Mary’s Grammy Shelton stayed over night so Mommy could go home and get some good sleep in her own bed with her kitties. Mary slept deeply for twelve hours straight last night in Grammy’s arms. When Mom and dad finally arrived this morning, little Mary was calm and wide-awake. She finally got to have oatmeal for breakfast, her favorite. Later in the day Grammy Hable came over from Bloomer. She was a source of strength for Mary, Mom and Dad. She has that way about her. She even got to have a cannoli from Casetta. Her presence really helped the day go by. Today was a day of waiting. Waiting for the Doctor to show up and perform the first stim study. The waiting still goes on. We could not get an answer as to when they would begin this process. Thankfully, Mary had another seizure and Dr. Frost was going to check it out on the EEG to see if it was a “good” one. We keep getting conflicting information about how many stim studies and seizures Mary must have. One Doctor says she may have to have up to five seizures and three stim studies. The other Doctor said she may only need two and two. Then later a nurse overheard the two Doctors talking about how they may be able to get the results required from one good stim study. Mary is a really good candidate for surgery because all of her seizures have always come from the same focus. This focus is right where her largest tuber is. This tuber is on the outside of her brain, right above her left ear. It probable makes contact with her motor strip but hopefully is not commingled with it. That’s what we need to find out from the stim studies. So, tomorrow we wait again for the Doctors and all of the rest of the people involved to get their schedules aligned to perform the first study. Apparently it must be astrological, the moon needing to be in the house of Jupiter in retroaction with Mars and Uranus. Something like that.

We did get some good news today, however. Our neighbor in the hospital, Tyler, will be having his grid and tubers removed tomorrow. His out date is scheduled for Monday after Mary’s. He has been in since last Monday and they got everything they need to do the deed. His family has been at this process longer than we have, almost a year. We are so happy for him and his entire family. We are praying for them a lot.

This just proves that we are in the right place doing the right thing. Thanks again to all of you for everything. Thanks especially to both Grammies for making our day today.

Monday, November 22, 2004 9:27 PM CST

Today was a day of ups and downs. Again Mary did not sleep well. At Midnight she had to have a dressing change and sometime in the middle of the night, her IV popped out. Both Mary and Mom were tired and crabby this morning. Once Daddy showed up, things settled down a little. Mary had a good breakfast and took all of her medicine well. The nurses said that if Mary could take a liter of fluids orally before she went to bed, she would not have to have her IV back in. It’s a good thing pudding is considered a fluid. Anyway, she did not have an IV in all day but at about 9:30 she needed another dressing change. Wow, Mary is definitely gaining her strength back. She fought so hard that she pooped. Yay!!! This is a major milestone to here recovery. After that, we were all tired and took a nap. About 1:00, Aunty Jenny and Cousin Tommy came to visit. Mary and Tommy have a love hate relationship. When they meet they immediately go to each other and start playing. Not long afterward, Mary usually pulls Tommy’s hair or he steals a toy from her. You can tell they missed each other and it perked Mary up. Soon after arrival, we had to do another dressing change. This time Jenny helped and Mom went to take care of Tommy. Jenny did great, and so did Mary. At about 5:00, Mary’s Occupational Therapist from Gillette stopped by. Kelly made Mary smile for the first time after surgery. She must have some other affect on her also because Mary had her first seizure after surgery, too. Later, Mary’s speech therapist from Gillette stopped by, Erin, and Mary was noticeably happy also. Grandma Kate came down and is giving Mom and Dad a night off so they can get some well-needed sleep.

One thing that did not happen today that we were hoping was the grid stim pass. One of the Doctors from the clinic is on family leave so they couldn’t get one scheduled for today. Tomorrow for sure.

So, some bad things happened today like Mary’s IV fell out again, she didn’t sleep well, and the stim pass didn’t happen. More good things happened, however, like she didn’t need a new IV, she had a seizure, she smiled and of course she pooped. We are very positive Mary is recuperating quickly from surgery and know that this was the best thing we could do for our precious little girl. These next three weeks are going to be the most trying of our lives but it will all be worth it.

Keep those guest book entries coming. It really perks us up. We have over 110 already and well over 1500 hits on the site. We are truly overwhelmed. Thanks to every one of you. Mary loves you all.

Sunday, November 21, 2004 10:05 PM CST

Day four saw some progress in Mary’s healing since her first surgery, not before a kind of rough night. Mary slept on her Mom’s lap most of the night, needing the comfort that can only be provided by a mother’s touch. Once morning came, Mary was feeling a little spunkier. At around noon, Mom went home for some well-needed R and R while Dad and Aunty Jenny stayed at the hospital with Mary. Mary really enjoyed watching football and the end of the Nascar race with her Dad. She even sat in a high chair for the first time since surgery and ate some real food: mashed potatoes with gravy and pudding. By late afternoon, she was feeding herself Cheerios and grilled cheese sandwich. About twice a day, Mary’s dressing has to be changed. While she sits on Mom’s lap, Dad holds her head and a nurse unwraps Mary’s head and rewraps it. During the second dressing change today, Mary showed that she has gained a lot of her strength back. She kicked and screamed and accidentally pulled her IV out. This was a blessing in disguise. We thought maybe she wouldn’t need another one because she has been drinking a lot of water and all of her meds are now oral. No such luck. The Doctor required us to put it back in in case of emergency. This time, we were able to put it into her right hand so her left, dominant, hand could be free. Shortly after that she was playing with her toys and pushing the buttons on her musical books. She has yet to smile since surgery but we know she is getting back to herself.

Tomorrow we hope to have the first of at least three grid stimulation studies done. We are excited to start that process. In the mean time, Mary has had her seizure med levels reduced in hopes of trying to induce seizures. We know that as soon as she gains more energy, she will start having some seizures. With any luck, we’ll get all of the testing done this week and maybe get out early. We aren’t counting on it due to the holiday but it would be a nice surprise.

One other note. Oddly, Mary’s surgeon was on Dateline NBC tonight. She performed a spinal surgery on one of the McCaughey septuplets who were featured on tonight’s show. Dr. Dunn was on for 4 seconds telling the parents that all went well. It was kind of cool. Mary’s first brush with fame.

We’ll keep you updated. Thanks for all of the prayers, kind words, thoughts and gifts. We really appreciate them.

Saturday, November 20, 2004 10:48 PM CST

Day Three of Mary’s ordeal was fairly uneventful, thankfully. She woke up with her left eye swollen shut and cranky. She is on three painkillers, an antibiotic, steroids, a stool softener, an acid reducer and her three seizure meds. Needless to say, most of her energy is consumed processing all of this stuff and healing. Most of the day she spent taking a nap on Mom’s or Dad’s lap. She had a few visitors but not a whole lot. By 7:00 PM the swelling in her eye started to dissipate and was almost gone by 9:00. Tomorrow we hope to have her eat more and drink more and get her on the floor to get a little more active. She just seems really bored. She’s not the only one. We backed off of her seizure meds tonight to try to induce seizures. She has to have at least three recorded before they will proceed with the next surgery. The first stimulation study is scheduled for Monday. We’ll let you know more about it after we’ve gone through it once.

Since there isn’t a whole lot of news, we figured we’d kinda explain some of the things in the pictures on jimandeileen.com (see link below).

The little green “life savers” stuck to her head prior to surgery are actually navigation markers for the Stealth robotic grid placement system. During her pre-op MRI, these established reference points to create a three-dimensional image that is fed into the computer that drives the Stealth system. It’s kind of like a GPS system for Mary’s head. The Dr. pictured is Dr. Mary Beth Dunn. She is widely considered to be the most talented pediatric neurosurgeon in the country, possibly the world. She has performed over 600 grip placements and has developed several techniques to make them more safe and successful. Some of these developments can be seen in the pictures of Mary’s head post surgery. Notice that only the area of the incision is shaved. Dr. Dunn proved that the whole head did not require shaving. The five wires that are sticking out of the top of Mary’s head do not come out of the crescent shaped incision that is stapled. They are actually run through the whole in the skull that is below that incision and held under the durra, which is the lining between the skull and the scalp. They are then threaded through individual holes at the tip of the head. This allows the durra to keep them in place, making the grid virtually immovable. In the past, all wires would come up through one hole. Dr. Dunn decided that each wire should get its own hole. This actually creates a better “seal” around the wires and considerably less seepage of blood and spinal fluid leaks from them than if there was only one hole. I Mary’s case, Dr. Dunn put stitches around the holes to make them even tighter. This is something she does on very small patients. So far it’s worked well. Mary has lost very little fluid and her incision has been very clean. What baffles us is that Mary only lost a thimble full of blood through suction during surgery. There was a little swabbed here and there in addition. In the 600 grid placements, Dr. Dunn has only had one patient that has required a blood transfusion. Occasionally they have to hang platelettes, such as on Monday with our friend Tyler, but not very often. Dr. Dunn was also the first surgeon to remove more than one tuber during a single surgery. In fact, it is very likely Mary will have two or even three tubers removed during her grid out surgery. As this stuff illustrates, we have the best care possible for our little girl. The pediatric epilepsy ward that she is in is the largest in the country, we have the leading pediatric epileptologist specializing in TS in the country as Mary’s primary neurologist and Dr. Dunn rocks. We are very lucky to live here and have found these people. Others are not so lucky, often having their children mis-diagnosed for months, even years. While this whole thing is stressful, it could be worse if we lived anywhere else.

So, we hope you enjoy this sight and find it informative as well as insightful. The greatest gift Mary can give back to you and the world is a better understanding of what she and one out of every 6000 people go through with TS. Oh, and of course she gives lots of sunshine and happiness with her smile.

Check in tomorrow for more info and additional photos. Until then, thanks to all of you from Eileen, Jim and of course our darling Mary. She truly brings light to the world.

Friday, November 19, 2004 9:49 PM CST

Wow, what a day. One would think that the days would get easier but today proved that wrong.

After surgery yesterday, Mary was taken to the Pediatric ICU where her Mom and Dad stayed with her all night. Actually we stayed in a room they had near by but neither of us slept very well. At 7:00 AM today, she was wheeled down to have her post op MRI. She was again sedated and taken into the MRI area. About a half hour later, one of the nurses informed us that one of the test equipment was not working so Mary hadn’t started yet. She was being kept under light sedation until it got fixed. As the last words left her mouth, another nurse informed us it was fixed. 45 Minutes later, Mary and Mom and Dad went up to the seventh floor of United Hospital to the pediatric epilepsy ward. We’ve been up there at least twice before so it was nothing new to us. In the room next to us is another grid patient whose family we know fairly well through the TS alliance.

Immediately after arriving, Mary’s dressing was changed and the grid was hooked up to the wires sticking out of her head. Mary has a crescent shaped incision from her temple around her left ear. About two inches from the stapled incision at the very top of her head, five wires are coming out that the diagnostic equipment gets plugged into. It is a graphic, interesting, disturbing sight all in one. Aunty Jenny will be posting pictures on jimandeileen.com soon. If you have a week stomach, I suggest you don’t check them out. Not that they are gory but because it is so difficult to see our little Mary’s perfect head altered in that way. By the way, Mary lost less than a thimble full of blood during surgery and less than half of that in drainage since then. The orangish liquid in the photos is iodine.

Anyway, Mary did not take too kindly to having someone hold her head still while two other people wrapped things around it and hung very heavy electrical boxes from wires anchored inside her skull. She was already groggy coming out of sedation and still hadn’t eaten more than a half jar of baby food in 36 hours. Her throat was soar from intubation during surgery, her eye was starting to swell, her nose itched as a side affect of the sedation and the very worst part was she couldn’t twirl her hair which is her way of dealing with stress (later the nurse hung a piece of tape in the exact spot she twirls so she could simulate it which she did and it really calmed her down well). After they got her head wrapped once, it slipped up to high and they had to do it again. During that time, the inner bandage inadvertently touched something non-sterile so they had to take it off and start over. Throughout the day Mary has been poked and listened to and blood pressure cuffed and had lights shined in her eyes and had her catheter removed (she didn’t like that) and was just generally irritated all day. Later in the evening, she had to get her dressing changed again, which was the icing on the cake. After that, she pretty much just passed out from exhaustion and frustration.

Tomorrow she will rest and let the swelling go down. Hopefully she will be able to take food, water and meds orally soon so they can remove the IV from her left (dominant) hand. That has really made her mad, too, since she can’t hold her pluggy like she likes to.

We’ll update you with more details of Mary’s schedule tomorrow as things calm down. In reality, things are going splendidly. Thanks for checking and enjoy the pictures.

By the way, Eileen, Jim and Mary are completely overwhelmed by the journal entries we have received. Special tanks to Rick for translating the French message. What a guy. When this is all over, we sill print out all of the kind things written and put them in Mary’s surgery scrapbook. Thanks and more tomorrow.

Thursday, November 18, 2004 7:29 PM CST

Today is the day. At 6:00 AM Mary checked into Childrens' Hospital in St. Paul for grid placement surgery. There was a little delay in the schedule due to miscommunication regarding what time she should not be allowed food and water but it ended up working out better. Mary was sedated for her MRI at about 9:00, had her MRI and was wheeled up to surgery at about 11:00. We met with Dr. Dunn the surgeon and Mary was taken into surgery at about 11:15. At about 12:30, Dr. Dunn came into the waiting room with a lock of Mary's curly hair tied in a ribbon and let us now that she is about to start the procedure and that for the next several hours, she would be treating Mary like she was her own daughter. Mary's Grandparents, Great Aunt Eileen and Aunt Jenny were with us the whole day, keeping our minds off of the happenings just behind the wall. At about 4:00, Mary appeared, drowsy from surgery with her head wrapped in a turbin of guaze. Under that turbin, inside her head was the grid that will help us identify if Mary can have her tubor removed that is causing her seizures. Mary was then moved up to ICU for the night. She is sleeping soundly and peacefully. Tomorrow at 7:30 AM she will have another MRI to make sure there is no blood clotting around and below the grid. From there she will be moved up to the pediatric epilepsy ward on the 7th floor of United where we will be spending the rest of this week, all of next week and the following week. Mary is scheduled for her Tuberectomy on the 29th.

Thanks to all of you for your support. We'll try and keep you updated every day. Check out the link to jimandeileen.com below for pictures of all of the happenings. Mary is doing great and so are her parents, thanks to all of you, especially her Grandparents, Aunts and Uncles.

Tuesday, November 16, 2004 9:21 PM CST

Hi everyone,

Thank you so much for visiting Mary’s site and for all of the wonderful guest book entries! Mary’s surgery has been rescheduled again. She is going in on Thursday, November 18. That’s all we are going to say so we don’t jinx it. I thought I would provide you all with a little background on Tuberous Sclerosis and how Mary was diagnosed.

Tuberous Sclerosis is a genetic condition commonly characterized by seizures and tumor growth in vital organs such as the brain, heart, kidneys, lungs, and skin. The disorder affects some people severely, while others are so mildly affected that it often goes misdiagnosed or undiagnosed. Some people with TS experience developmental delays, mental retardation, or autism. However, there are also many people with TS living independent, healthy lives and are in challenging professions such as doctors, lawyers, educators, and researchers.

At least two children born each day will have TS. Current estimates place TS affected births at 1 in 6000 live births. TS is transmitted either through genetic inheritance or as a spontaneous genetic mutation. Children have a 50% chance of inheriting it if one of their parents has the condition. At this point, only one-third of TS cases are known to be inherited. The other two-thirds are believed to be a result of spontaneous mutation. The cause of these mutations is still a mystery. We went through genetic testing last year, and it was confirmed that Mary has a mutation of the TSC2 gene, but neither Jim nor I have TS.

Our little Mary Kathleen was born on June 23, 2002. When Mary was born we had no reason to suspect that anything was wrong. My pregnancy was completely normal with no complications and Mary passed all of the tests that they perform on newborns. Shortly after bringing Mary home from the hospital, we began to notice that she would blink her eyes and make a funny movement with her mouth. Neither Jim nor I had seen someone have a seizure before, and assumed that all seizures involved trembling of the entire body. So, when she did these odd movements, we didn’t know what it was, but didn’t worry too much either. Unfortunately, these episodes continued and became progressively worse. Mary began to raise her right hand in addition to blinking her eyes, and also started making a choking noise. The thought that this might be a seizure had run through my mind, but I quickly dismissed it.

On July 31, 2002, I was at my parent’s house and Mary had a seizure. We all looked at each other and realized that this was not normal. We got in the car and drove to Children’s Hospital in St. Paul, having no idea what we were in for. When we arrived at the hospital, they asked a lot of questions, and then immediately admitted Mary to the epilepsy unit. She was hooked up to an EEG, and within an hour had another seizure. The doctor came in and confirmed to us that our suspicions had been correct, that Mary had been having seizures. However, at that point they did not know what was causing them. The next morning an MRI was done, and that unfortunately confirmed that Mary had Tuberous Sclerosis. In addition to the MRI, an ultrasound of Mary’s heart and kidneys was also done. Her kidneys were clear, but she does have 2 tubers in her heart. Most likely the tubers in her heart should never be an issue.

TS was something that neither of us had ever heard of and had no idea how our lives would be changed at that moment. I remember thinking that we could just put her on medication and everything would be ok. Well—we learned very fast that the meds would not be a magic solution to stopping the seizures. After being released from the hospital and on one medication, Mary began having 1-2 seizures per hour and sometimes up to 15 seizures in one day. Each of these seizures would last anywhere from 30 seconds to two minutes.

Since she was diagnosed, Mary has been on nine different medications. Unfortunately none of them have provided complete relief of the seizures. This past year has been much better seizure-wise than her first year of life, but she still has between 1-4 seizures per day.

The seizures have affected Mary’s development in all areas. Her language is at the level of a 17 month old. She is not walking independently—yet—but we fully expect this to happen soon. It has been extremely difficult dealing with and accepting the diagnosis of Tuberous Sclerosis. But, at this time, we have our greatest hope for seizure control, and that is surgery. We feel extremely blessed that surgery is an option for Mary as we know that it is sometimes not an option for other children.

Mary has a total of 13 tubers throughout her brain. Her seizures are coming from the left temporal lobe, where 3 tubers appear to be causing all of the trouble. They hope to remove all of these during the surgery. The other tubers that do not have epileptic activity coming from them will not be removed.

We started out the process to determine if Mary was a surgical candidate in May 2004. At that time, Mary was admitted to Children’s Hospital for a video EEG. This involved having electrodes placed on her head and being video-taped. Mary had 3 seizures while she was there and luckily we only had to stay in the hospital for 1 night. After reviewing the EEG, Dr. Frost confirmed that all of her seizures were still coming from the same area that they had been since she was diagnosed. He also felt that she appeared to be a surgical candidate. The next step for us was to go to Detroit to get a PET scan done. But before we could do that, he had to present her case to the Children’s Hospital surgical conference.

Dr. Frost presented her case, and Mary was approved to go forward to Detroit. The reason we had to go to Detroit is because there is a physician there who has developed a special PET (positron emission testing) scan (similar to an MRI) specifically for patients with Tuberous Sclerosis. This test would indicate exactly how many tubers Mary had, and also rate the amount of epileptic activity coming from each tuber. At the end of June 2004, we traveled to Detroit and had this test done. Luckily we only had to stay overnight for 2 nights and then were able to come home.

Once the results of the PET scan came back, Dr. Frost had to present Mary’s case again to the surgery conference. This would determine if Mary would be able to go ahead and have surgery. Thank goodness she was approved, and now here we are today. We are looking forward to the surgery and the hope that it will bring for Mary’s future.

The surgical process for removal of the tubers is quite complex. It actually involves two surgeries. Since Mary has 3 tubers that would likely be removed, further monitoring, beyond the PET scan and EEG is recommended to better confirm the exact regions where the seizures are coming from. So, the doctor will place a subdural electrode grid on the surface of Mary’s brain. The grid is a small piece of soft plastic dotted with electrodes. The electrodes are made of platinum or iridium. The surgeon places the grid where they believe the seizures are coming from, so in Mary’s case it will be on the left temporal lobe. The grid will rest on the surface of her brain under her skull. Once the grid is placed, they will monitor several of Mary’s seizures in order to identify the region of the brain in which the seizures start to appear.

In addition to confirming where the seizures are coming from, the grid will also be used to make sure that none of Mary’s functional areas of the brain will be affected (speech, memory, vision, comprehension, sensation, movement). In order to obtain this information, the doctors will perform what is called “Stimulation Studies”. The doctors will stimulate her brain through the grid using a Grass Stimulator. They will use this equipment to deliver a very small electrical current to each of the electrodes in the grid. This will not hurt Mary, but may cause her to have some strange feelings, involuntary movements and an inability to speak or remember. But, these experiences are only temporary. The Stimulation Studies need to be done 3 times and by 3 different doctors. The results of all of the studies done by each of the doctors must be exactly the same. If any of the physicians gets a different result, then the study has to be done again. So, once the grid is in place, Mary must have at least 3 seizures and 3 Stimulation Studies done before they will remove the offending tubers.

Most patients are released to go home from the hospital within 3-5 days following the second surgery. We are very hopeful that Mary will have a speedy recovery and be back to her playful self in no time!

We again would like to thank everyone for your prayers and support. We are so grateful to all of our family and friends who have been there for us every step of the way. We would also like to thank all of Mary’s doctors, therapists and teachers. Mary loves you all and is SO lucky to have such wonderful, loving people in her life.

Sunday, November 14, 2004 10:41 AM CST

What a week. Per previous journal entries, Mary's surgery was cancelled on the 4th and we have been trying to get it rescheduled. This is not an easy thing to do considering the surgeon, a physician from the MN Epilepsy Group, an operating room and a grid room have to all be available. Considering the holidays, a national epilepsy conference in early December and other scheduled activities, Mary's "in date" for grid placement surgery is not until January 3rd, and her "out date" for grid removal and potential tuberectomy is planned for January 10th.

The outpouring of support you have all shown has been amazing, just check out the guest book and you'll see what I mean. Needless to say the last few weeks have been a huge roller coaster ride for the three of us and we would have surely been thrown onto the tracks without the support each of you has given. We are going to take an emotional breather for a few weeks and go through it all again soon. I know each of you will be there for us.

Thanks so much for everything. We can't name everything that has been done, nor the people behind it. We can say thank you over and over and we mean it every time.

We thank you, especially Mary.

Tuesday, November 9, 2004 10:34 PM CST

Hi All:

Well, we promised we would update this site daily if things happen. That was last Thursday and still nothing has happened, except a little anxiety.

We are still hoping to here from the nurse at Dr. Frost's office with the date of reschedule for Mary's surgery. If we don't here anything tomorrow, we may need to be a little less nice about it (i.e. Jim calls). If something happens, this is where you'll here about it first.

Thanks for stopping by for updates. You are all wonderful.

Thursday, November 4, 2004 8:02 PM CST

We woke this morning to beautiful frost on the lawn, a glaze of ice on the pond and the sun rising into a blue sky, but that did not dent the disappointment knowing that it is the day Mary was supposed to have her initial surgery that would most likely make her seizure free.

As yesterday's journal entry noted, Mary's surgery was cancelled due to above average white blood cell levels, usually indicating an infection. Today, Mary went to her pediatrician to get that figured out, to no avail. After various poking and prodding, her Dr. found nothing unhealthy. She did suggest that stress can sometimes lead to elevated white cell counts or it may be residual from the cold she just got over last week. The good news is that Mary does not have to be on antibiotics. If she were, she has to be off of them a full two weeks prior to surgery.

Upon learning the news, Eileen called Mary Conroy, RN, the head scheduler at Dr. Frost's office. Mary assured us that she has emailed the surgeon's office already to find another date. We will hopefully have the new date by tomorrow or Monday. Everything will then be dependent on the lab results prior to the new date. Please pray for normal levels!!

Thanks again for all your support. We will try to update this site daily unless there is no change in news.

Mary loves you all!!

Wednesday, November 3, 2004 10:12 PM CST

Hello Everyone. Thanks for stopping by.

This beautiful November morning Mary, Mom and Dad went to visit Dr. Frost and Carol for the preop physical. As soon as Mary realized it was Dr. Frost, she started crying at the top of her lungs. She passed with flying colors, we chatted for a while and then we met with Dr. Dunn's Nurse, Kathy. She showed us pictures of what the grid will look like once it's on the brain and she had an actual grid there. She filled us in on the process. Carol came back in and showed us the "pictures" from our PET scan in Detroit. Wow, the tuber in question is a lot bigger than we thought, like the size of a plum. After leaving there, we were fully convinced this was the right thing to do and our minds were ready to make it happen. All we had to do was go have a blood test and the coast would be clear. The blood test was over by 1:45. At 4:45, Carol called to give us the results. Mary's white blood cell count was high, indicating that her body was fighting some sort of infection. Dr. Dunn would not take the chance and canceled Mary's surgery for tomorrow.

So, tomorrow we go to Mary's pediatrician to find out what's casusing the high white cell count, try to get it fixed and rescheduled. The very earliest we will be able to get scheduled is November 18. We are not optimistic of that date and expect it to be sometime in December, maybe January.

Needless to say, our emotional rollercoaster just sped down hill at 60 miles an hour. We are very grateful for all of the precautions that are being taken. We know given the circumstances that this is the corect decision. That doesn't make it any more disappointing or frustrating.

So, thanks again for stopping by for an update. We'll continue to keep you posted. With the help of all of you, Mary, Mom and Dad will get through this no matter how long it takes.

Tuesday, October 12, 2004 9:49 PM CDT

Thanks for stopping by. Mary is scheduled to go into surgery on the 4th of November. We hope to use this page to give everyone updates as well as draw support from you, the ones we love. Thanks for everything. Without you we would not be able to make it through all of this.

Eileen, Jim and of course Mary

Monday, September 27, 2004 8:51 PM CDT

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