January 31, 2008

I am currently putting my students through the ringer (a graduate auditing exam) so while they are diligently working on their exams, I am taking the opportunity to update the blog. I know I will be busy grading this weekend >60 multiple choice and 8 essays for 58 students so I figured there was no time like the present to post an update.

The past few days have been really good for Mandy Pandy. She has been very happy! She smiles a lot and has really gotten excited about waving bye-bye on command. She has done well in her therapies as well. She also has been doing well at following commands. The other night I was asking her to give me a hug, then give me five, then clap, then wave bye-bye and she would do each thing asked. She has also gotten pretty good at touching the right animal on her toys when we say things like "where is the pig, dog, horse, cow, etc). We have also had some good success with color related questions. Yesterday, she also enjoyed the warm weather by swinging and squealing with delight outside on her cool new swing. She loves to swing, dance, ride horses -- in fact she loves anything with a lot of movement.

Katie is also doing well. She was got an award at school yesterday for being on the all A honor roll and another award for meeting all of her goals for the 9 weeks. We also made flash cards last night to help her with her multiplication tables. She has most of them down pat but is still working on 7s, 8s, and 12s. This Friday, Dan and I are taking her out to dinner and to the Hannah Montana movie. Nana and Papa were nice enough to score us some tickets. It is a surprise for Katie so please don't let it slip. All she knows right now is that we are all going out together to do something fun. She is a huge Hannah Montana fan so I am sure she will be excited.

Well, that is all that is going on here at the moment. I hope you are all well and happy.
God Bless,
Susan

January 29, 2008

The past 7-10 days were a bit intense, but things are definitely looking up. Amanda had been trying a new medicine with the intent of getting off the one that causes kidney stones and it did not go well. She was incredibly fussy and tired the whole time ... so much so that she wouldn't even engage in therapy. It all came to a head this weekend with intense crying, muscle weakness and lethargy. Thankfully, she is now off that medicine and has returned to her normal happy self! What a wonderful gift to have our happy, silly little girl back!!!! She has been very happy since Sunday evening and has been giving hugs, giving five, clapping, waving bye-bye and giggling a lot. To try to get off Topamax, we are back on Keppra but on a lower dose and we have seen nothing strange at all so far. She is definitely happy! We will continue to wean Topamax over the next few weeks in hopes of getting fully off it. Our goal is to get down to a low dose of one medicine (Keppra if things continue to go well at this lower dose) and give her as much opportunity as possible to take off in development. She is primed and ready for another developmental spurt so we are excited about her potential. She is also growing like a weed.

Katie brought home straight "A"s again with her report card. We are very proud of her. She was one of the 4 students in her school to "win" the science fair and progress to the county-wide competition. She gets to have her name and picture in the yearbook and won a very nice medal. Way to go Katie. She did an excellent project analyzing which stain removers work best when washing clothes in hot and cold water. Let me know if anyone wants to know the results.

Paws4people came up with a great way to raise money that doesn't cost anyone a cent. I will be passing along information soon on how to take advantage of the opportunity. It works a lot like UPromise where as long as you log on to Amanda's mall prior to doing on-line shopping (i.e. you access the companies participating through that site, the companies pay back a rebate to Paws4people for your purchases). The cost to you is the same regardless of whether you go directly to the company or go through Amanda's mall so it is a pretty neat way to raise money. I hope to get her mall set up this weekend. I do a lot of my shopping online so I am excited about the process.

I hope everyone has a great week! Love to all!

Susan

A Great Visit In Charlotte

This weekend, we got to visit our Paws4people friends and the service dogs in Charlotte. It was a WONDERFUL weekend. Candace and Paul were perfect hosts. We had great meals and great fun visiting with one another. Kyria and Heidi made the 6 hour trip down from Morgantown WV with ELLIE and COLT. We had two meetings over the weekend to discuss commands that are most important to Amanda and to discuss fundraising. We got to see ELLIE and COLT show off their skills -- things like turning on and off a light switch, picking up things off the floor and bringing them back, speaking, bracing, and reading! Yes, ELLIE knows how to read. When Heidi (the trainer) would hold up a sign that said SIT or DOWN, ELLIE would read it and do what it said. That will be a big help to Amanda since her verbal skills are still developing.

We have started Amanda on a new medicine in hopes of finally getting off of the Topamax so that we can give her a better chance at developing stronger verbal skills. Topamax is associated with cognitive issues and speech problems, in addition to the kidney stone issue. Thankfully, all this goes away when she comes off Topamax and they are temporary effects that cause no permanent problems. Topamax was great when she was younger because it protected her brain from damage from the hundreds of seizures she was having and it was great at controlling her seizures once she had the surgery. Now, it will be good for her to try something different. Many children have huge gains in skills when they come off Topamax because they were able to learn fine while on it but just couldn't get out what they wanted to say. When the Topamax "fog" was removed, they jumped ahead in a big way. A friend of ours had this experience with her daughter. So, we are now jumping up on Trileptal with the hope of coming off Topamax and giving Amanda this opportunity think and speak more clearly. So far, she is tolerating the new medicine just fine. We will keep you posted on her progress.

Katie had a great time in Charlotte despite being a little disappointed that the snow didn't stick. She slept with her PJ's on backwards two nights in a row in hopes of snow deep enough to sled on (we took the boogy boards just in case given the forecast for snow). She had a great time playing with all of the dogs. In addition to ELLIE and COLT, KOJAK, and LANEY were also there. LANEY is Candace and Paul's dog and she works with kids in Candace's special needs classroom. KOJAK is the service dog for Ashley's mom and Katie kept him company a lot. She was very concerned that KOJAK might be sad with his people out of town so she made sure he knew he was still loved. They had a great time together.

We hope you are all fine and having a great day! God Bless!

Susan

Paws4People / Parade Magazine / Amanda News

For those of you interested in a challenge, Parade Magazine is giving $50,000 to the charity that gets the most diverse donations in the next two weeks. Grace's Mom has entered Paws4People in the contest and there are only 16 days left to donate. If you are interested in trying to help Paws4People, it only takes a $10.00 minimum donation to possibly turn into $50,000. You can donate at:
http://www.networkforgood.org/pca/Badge.aspx?BadgeId=109639
Paws4People helps kids like Amanda, her friend Grace and other children get service dogs! Thank you so much for help and support. For more information about the America’s Giving Challenge contest go to:
http://www.parade.com/contests

Amanda is mostly doing well. She continues to do well with the use of her right arm. She has had some kidney stone issues this week so we are hoping that all calms down soon. Last night was really rough but she seems a lot better today, although she is still not her normal self. We are heading up to the neurologist tomorrow just to be on the safe side. We are supposed to go see our friends at Paws4People and the service dogs this weekend so we are hoping she gets back to her normal self quickly. She is silly right now, so that is a good sign. Hopefully, all will work out for the visit. We hope you are all doing well out there!
Love and blessings!
Susan

January 9, 2008

Happy 2008 to everyone! We had an eventful New Years (that is always good). Dan got home from seeing his parents in Houston and we "spent New Year's Eve together." Katie and I were determined to see the ball drop in NYC and we both stayed up until 11:55. When the Dick Clark show went to commercial, we both fell asleep and missed the ball drop. Dan came walking in a few minutes after midnight laughing at us. We were able to hit rewind on the DVR and watch the ball drop a few minutes later. It wasn't quite as exciting but it was fun nonetheless. Katie was still happy to be awake at 12:05 am and enjoyed the rewind. She is tons of fun to hang out with.

Katie went back to school last week and Dan started by to UNCW today. My first classes are tomorrow (I guess I really should finish up that syllabus). We are getting back to our normal schedule. Katie is one of three 3rd graders selected to participate in this year's science fair. She is doing a project on what stain removers work best. So far, bleach is in the lead and Tide to Go is in last place, but she has a few more tests to go. She has a couple books left in her Beyond Books assignments to go before she moves to the 4th grade book list. She is already reading 4th, 5th and 6th grade level books for Accelerated Readers. Way to go Katie!

Amanda is back in her therapy routine. She has had some really good therapies lately and she had one day when she showed how strong her right of refusal can be. The kid has got spunk! Everyone is commenting on how much more interactive she is now. She has gained a lot with respect to right hand skills but it seems like her intellectual capabilities were equally well improved by the UAB therapies. I spent my evening buying jingle bells, uncooked beans, and other interesting items so that we have all the supplies needed to keep waking up her right side. I am sure the checker had some serious questions about the contents of my basket (given I bought something like $25 of dried beans). Amanda loves her beans (they are a great texture for her to play with and we stick them in a big bin and rub them all over her right arm). I got a good deal on the jingle bells in case you are curious.

The next few weeks should be pretty low key (we hope). Then we get to go to Charlotte and see our Hearts-N-Paws and Paws4People friends and the therapy dogs again! Yippee!!!! We are very excited!! Amanda will be quite happy and Katie will be delirious! Amanda has been paying a lot more attention to Ringo lately so she will be really happy when she gets to see her other buddies again. Thanks so much to all of you who have helped financially with Amanda's therapy dog! We sincerely appreciate everything!

Love to all!

Susan (& Dan, Katie & Mandy Pandy!)