A Great Last Week of March!

The last week has been absolutely awesome! Amanda has been "on" all week. She has been silly, energetic, fully engaged, very interactive, and just tons of fun to be around. I think her system is finally getting used to being off Topamax, especially now that the migraine is gone. She certainly is one silly kid these days. We feel so blessed to have a giggling and happy little girl again. We are now weaning Diazapam and so far so good! It will be nice when we are down to one type of medicine. The Diazapam is addictive so it will take almost 6 months to wean. Amanda is handling it like a trooper though.

Amanda has been doing really well in all of her therapies. She also has been enjoying the outdoors. She walked over a mile on Friday night in her gait trainer. She also kicked a soccer ball. She thought that was pretty funny. She loves the gait trainer because it gives her some independence. Katie, Amanda and I got to play outside for almost 3 hours on Friday night. We went for a walk and Katie biked and roller bladed. Katie's feet are so big now that she is wearing my rollerblades. It is amazing how fast they grow up!

We also moved the horses down to their new place this weekend. We picked a great weekend to do this since it was 44 degrees and raining :-). It is so nice to have them close. Now Amanda can do equine therapy anytime she wants. Katie is really excited about being able to ride more often as well. She is also becoming quite adept at cleaning stalls and feeding. She is a big help.

Our other big news is that Terry from paws4people visited last week and the whole crew is coming the weekend of April 12-13 to do Azalea Festival and the South Beach Grill fundraiser. It is also official that ELLIE is being trained for Amanda!!! Yippee!! We love ELLIE!!! If you live in Wilmington, we would love for you to eat at South Beach Grill on the 13th! We will also have a booth at Azalea Festival both days! If you come by to see us at the booth, you will get to meet ELLIE! There will also be a dog presence at South Beach Grill (maybe even Amanda and ELLIE together if the weather cooperates).

Hope you are all having a wonderful spring! Thanks for all of your love, prayers, and support! May God Bless you today and always!

Susan

March 25, 2008 Update

We spent the day in Raleigh today at the neurologist's office. Amanda had an EEG and then an appointment. All went really well. We figured out a lot of things. First, the head drops continue to be behavioral and are no big deal. The little seizures with her eye getting stuck that she has had while weaning off Topamax are not uncommon when switching meds and are also no big deal. She has not had one in over a week, which is nice. We bumped up her Keppra a week ago and that seems to be working well. She also has no big spikes on her EEG which is also a great sign. The other issues we have had over the last 3 weeks (crying, sensitivity to light, motion, an noise etc appear to be migraines. These have become more common since we got off Topamax but we are blessed that Tylenol and Motrin seem to work well on them. Hopefully they will become less frequent once her body adjusts fully to being off Topamax.

As far as Amanda's behavior goes, she has been a nut for the last 2 days (ever since we gave her some Tylenol and Motrin for a mild fever - yes you heard that right -- she had a fever and she did not have a seizure!!!!!!!! Yeah!!!!!!). Anyway, she has been giggling non-stop, pulling hair, walking all over the place (with help), doing a great job practicing her sitting and standing skills, playing with her toys, rolling all over the place, squealing with delight, eating like a horse, etc. It was amazing to see the transformation in her when the fever and migraine went away. She is one happy camper now and tons of fun! She was a wild woman in the EEG today as well. She was pushing, pulling, rolling, yanking my glasses off, yanking her glasses off, eating with great precision (reaching across her body to pick up small things), and laughing her head off. She thought the EEG was playtime.

Afterward, we got to see a friend from a CPA firm and then came back to Wilmington where she has been riled up ever since. She is having a great day! We hope all of you are having a great day as well. By the way, happy belated Easter! Also, Dan had a great birthday - he is 29 yet again! Amanda loved his birthday cake. I will have to post a picture of her all covered in frosting.

The other HUGE news is that Katie came home from school today with news that she is now reading on the 7th grade level!! She just loves to read! Tonight, she read an entire 120 page book! Way to go Katie!!!! We are so proud of you!!!!!!!!!

God Bless!

Susan

Here is another update about baby Madeleine....

"Hey, I wanted to update you. They took out the jp drain and edv tube from her head. She is doing Fantastic!! She looks like a reborn child, her eyes are amazing how they are wide open and bright. She has always had a look of being dopey. She is holding her head up smiling and laughing. What a little trooper she is.They are tough I don't think I could have held up like she has ,it's just amazing how tough children are.We are being released today from the hospital but we are staying in a hotel close by the hospial for a few days,just to be on the safe side. Prayer works and God is GOOD!! GOD BLESS! Wendy"

Thanks to all of you who have been praying for her! It is wonderful news that she is doing so well!

Things are going well here. Amanda had her last ever dose of Topamax last night so she will be totally off Topamax from here on out. Our next step is to start weaning the Diazapam (Valium) so that she can get off of that. It takes a lot longer to get off Diazapam because it is addictive so it will probably take around 6 months to be done with it. Once that happens, we will only be on Keppra and hope to only have to take it twice per day. That would really benefit every one's sleep schedule since right now, we have to take Diazapam every 8 hours, so the last med of the day is taken at 11pm and the first one of the next day is at 7am. Amanda has handled the weaning of Topamax really well.

She has been a nut lately. Today she gave Dan a nice puncture wound on his shoulder when she decided to bite him out of excitement. Her therapies have gone well this week too. Her stamina at walking seems to be really improving. Now if we can get her balance to get there, she should have the skills needed to walk. We are moving our horses down near our house so that should really help us to get out to do therapeutic riding more often. I think Amanda's balance will get really good if we can do therapeutic riding at least 4-5 times per week.

Katie is doing really well. She continues to excel in school. She starts cheerleading with her best friend the first of April. She is also excited about having the horses 5 minutes from the house. It took a long time on the waiting list to get in, but it will be worth it.

We are starting to plan for the Azalea Festival event in April. Our friends from Paws4people will be coming down with several dogs and we will have a booth at the event to try to raise money. A local restaurant, South Beach Grill, has also been generous enough to help us with fundraising and awareness that Sunday. They will donate a portion of all proceeds that day to Paws4people. We are blessed that there are such nice businesses in the community that want to help us out.

We hope you are all doing well! God Bless!
Susan

Thanks to everyone who has been praying for baby Madeleine. She had her hemispherectomy yesterday in Detroit with Dr Chugani. I got the following update today from her mom Wendy.....

"Madeleine's surgery lasted 9.5 hours. We were updated every hour during the surgery. She has done really good. We are in ICU but are moving to the neurosurgery floor today. She lost perpheral vision in the right eye, I haven't seen her move her arm,fingers or leg but has wiggled her toes. Hopefully that will come with time and therapy. I wanted to let you know how everthing is and talk to you soon!!"

Amanda is having a great week! She didn't enjoy the front that came through last night but besides that, she is silly and going strong. She is losing the Topamax tan more and more each day. It is strange to look at her and not see that tan look. She is just as beautiful with a light tone to her skin as well. She has been doing well making choices lately. She also is on a "no" kick with shaking her head. We do get some "yes" nods as well but she thinks the "no" shakes are much more funny.

Katie is also having a wonderful week. She is loving having 3 kids here to visit, ages 7, 10, and 13. All the kids are having a blast together. Too bad Katie is the only one who doesn't have spring break this week. She is making the most of her afternoons with the kids though. I am sure she would love for them to stay a few more weeks.

I hope everyone is having a great week. God Bless!

Susan

3/3/08 Update

The new SlammerDogZ / paws4prisons newsletter is out and it is a great one!! Be sure to read the cover story -- as it is painful, touching, and hopeful all in one article. All previous newsletters are also posted at the website listed below. Amanda was featured in one, there was an article about our trip to USPH in another, and this time there is an article about ELLIE, the service dog being trained for Amanda. There are also wonderful articles about Grace Meek, the beautiful and inspiring 9 year old girl in WV that will be receiving COLT and articles about the inmates, dogs, etc. I encourage you to read everything. It is a great program and lives (including ours) are being changed!!! We can't wait until the next trip to WV (hopefully in April, and May, June, July & August - yippee!) to see Grace, the inmates, the dogs, and our paws4people friends again!!!
http://www.SlammerDogZ.org/newsletters

Amanda is doing well. We had a few blips coming down off Topamax but nothing bad. We bumped up her Keppra to a therapeutic level to see if the blips go away. She is in great spirits and is learning a lot and showing off her heightened intellectual skills to therapists, family and friends.

Baby Madeleine, another child in NC with Infantile Spasms whose family we correspond with, is having her hemispherectomy tomorrow (Tues 3/4) so please keep her in your prayers!!! Her parents are having to pay for the whole surgery out of their own pockets so if you know of any good ways to raise $66,ooo, please feel free to contact me. She is a beautiful baby and is blessed to have parents who will go to great lengths to do the best for her.

We have company coming in for spring break. It will be nice to see old friends again. Dan also comes back from Texas today so we will be excited to see him.

Have a blessed day!

Susan