As you can see, the girls had a great Christmas! This was the first Christmas that Amanda actively participated in the festivities. She started off a little timid about ripping paper, but by the end of the morning, she was more than willing to rip away. Both of the girls enjoyed dressing up for the occasion. Katie also kinked her hair as well (Mommy did too but you don't get to see pictures of that). It was a very special day to all be together again to share in the birthday of our Lord and Savior Jesus Christ. Happy Birthday Jesus! We hope you all had a wonderful Christmas as well!
Love,
Susan, Dan, Katie & Amanda
P.S. Amanda had her first physical therapy appointment today since her UAB trip. Her therapist, Kelly, was really excited about her progress. She did a lot of good weight bearing on her right arm and showed off her skills at pushing musical toy buttons with her right hand as well. Way to go Mandy!!
We got back yesterday morning and it is nice to be home! Katie and Dan were happy to have us home and we were both happy to see them. Amanda has been squealing a bunch and saying DaDa a lot. She had a great time playing with Katie today as well. Have a very Merry Christmas and a Happy New Year. We will post Christmas pictures soon. God Bless!
Amanda had a good day today. This week has been absolutely wonderful for her. Today she showed a little spunk and independence in terms of what she was willing to do (but there was also a storm front coming through and she seems to be stronger willed on those days). She is definitely finishing strong though. Tomorrow she gets her cast off and does her final testing, then we head toward home. We should be home by mid-day on Saturday. It will be nice to be home again with Dan and Katie. Nana will be happy to get back to see Papa too.
Nana deserves a medal for spending a month with me and Amanda and missing her 49th anniversary with Papa. Instead of being together for their 49th, Nana was hanging out in Birmingham and Papa took Katie Christmas shopping in Wilmington and out to dinner. I think his wallet was quite a bit lighter after the experience. Dan and Papa definitely deserve medals for living as bachelors for the last month. I think it was harder on Papa than Dan because Nana is a really good cook.
We truly can not say enough wonderful things about the UAB staff. Dory, Mary Rebekah, and Stephanie are tremendous at what they do. They care deeply about the kids they work with and really push them to achieve their potential. They also went above and beyond the call of duty with a couple glitches we had while we were here -- THANK YOU DORY, MARY REBEKAH and STEPHANIE. We would do the program all over again if given the chance. In fact, we are already looking at future dates.
We get to go home with a home program to help us build on all the skills Amanda has gained while here. We also have hours and hours of video to help guide us through all the techniques and drills to use. We are excited to continue the therapies on our own at home. We will get to bring her cast with us and use it when we want to do so. We also bought Amanda a bunch of the cause and effect toys that she really enjoyed using during therapy.
If I get a minute to post tomorrow I will. Otherwise, I will be back in touch when we get back to Wilmington. I hope you all have a very wonderful CHRISTmas and a tremendous New Year. I will keep posting fairly regularly but I wanted to wish you those things early in case you have travel plans for the holidays. God Bless! Susan
As you can see from the picture, Katie looked absolutely beautiful, and so grown up, at her Christmas Party this weekend. She and her friend (and next door neighbor Tyler) went to the party together, along with her Dad, Miss Megan, and Miss LyAn. Katie is quite excited about Mommy, Amanda, and Nana returning this weekend. We should be back in Wilmington by Saturday afternoon. It will be a great Christmas present to all be back under one roof as a family. If all goes perfectly, Katie's horse may be in Wilmington before Christmas as well. It all depends upon how fast her Coggins test comes back. We have a shipper lined up, so hopefully all works out ok. If not, she will get to Wilmington around 1/2/2008 instead. Katie is very excited about "Lady" and I am equally excited that she will have an attractive, well-trained, well-rounded horse to ride that she won't outgrow any time soon.
Amanda is having a great week of therapy. She accomplished all of this week's goals on day one and has been building on her progress ever since. She now likes to "give five" with her right hand and use it a lot to smack at things, push things, etc. She has also done a lot better with weight bearing this week and she follows commands really well. Her favorite is when I ask her to give me her right hand and then when she does, we bounce around and dance and sing (thankfully she is not picky on who is singing to her). Yesterday, she had her cast changed again so she has a nice new bandage. We also finally solved the tape chewing dilemma and have her entire left arm and cast covered with a sock. Below is a video of Amanda knocking a toy off of a tray. As you can see, she is getting pretty coordinated with that arm. As I write this entry, I am hearing lots of "good jobs" from the therapist as she works with Amanda. It really has been a great experience. The therapists are sending us home at the end of the week with videos and a home program so that we can continue the progress at home. They indicated that this is a critically important time for her, given her age, and that we need to be sure to continue to build on everything they have accomplished. It is an exciting time. Amanda is really fun to play with now and much more interactive than she has ever been so continuing on the progress should be fun.
Amanda had another great day in therapy yesterday. Her big break-through was that she kept wanting to get into the crawling position and when she did, she would rock back and forth like she wanted to crawl forward. She also did really well at reaching out consistently for toys with her right hand. At one point during the day, she was reaching out 100% of the time for a particular toy. She also got a special delivery from her Grandmama and Grandpa of a musical Christmas toy. The therapists asked that we not play with it this weekend so that it can be a super special toy for next week to help motivate her. We played it once for her and she loved it. I am excited to see how she does with it next week. I will post pictures of her playing with it next week.
Today, she had the day off and got to have some fun checking out a horse for Katie. We have been looking for a new horse for Katie for a while, as we sold her pony. We wanted to get her something a little bigger and a little better trained that she could have for a while and we found the perfect horse for her today. The picture is of Amanda testing Katie's horse out for therapeutic riding. She passed the Amanda test with flying colors. Amanda had a great time on her and the horse seemed to genuinely enjoy Amanda. I know Katie will love her new horse. She is exactly what Katie wanted. The horse is a real sweetie and is very well trained. Now we just have to work out the logistics of getting it back to NC.
Katie is going to a party at our old barn tonight. She gets to dress up in a snazzy dress so she is really excited. Tomorrow she gets to go ice skating. She has been living it up while we have been out of town! It is nice that she has so many nice people to do things with in NC.
The other neat thing that happened today is that Dan's cousin Lori called. That was a nice surprise and it was really fun talking with her.
Anyway, I hope all of you are having a wonderful day. Thanks for the love and support. God Bless!
Amanda had a wonderful day yesterday and is having a very good day today. She blessed us with a 5 am wake up this morning to boot. She is increasing the use of her right side to deliberately reach for toys. I have attached a video to today's posting to show her progress with the use of her right side. This is very impressive given she had virtually no use of this arm following surgery and usage has been limited to date. She is also much better about catching herself with that arm to prevent tipping over, weight bearing, and pulling a spoon to her mouth. She gets her cast off for a few minutes today. She loves getting the cast off because she gets to splash in the bathtub for a few minutes. Then, they change the dressing underneath and reapply the cast. The cast has a big cut all the way up so it can be easily removed and replaced. Anyway, we are excited about her progress. Enjoy the video....
Today was a great day at therapy. Amanda is finally back to normal following an eventful end of last week. Toward the latter half of last week, Amanda started dropping (i.e. collapsing) frequently and making odd jaw movements (similar to lip smacking or jaw popping). She got to the point that she was doing this very frequently (nearly 100 times per day). We talked to her neurologist and we were all concerned that she was having seizures. Thankfully, an EEG set up by the wonderful ACQUIREc staff at UAB (thanks Stephanie!!!!!!) indicated that the episodes were not seizures. Amanda had been on a new medicine for about a month and we were hoping to transition to that medicine from Topamax. Unfortunately, it appears that these "behavioral tic/episodes" were caused by that medicine so we have totally discontinued it. Her odd behaviors have decreased steadily over the past few days. The other big benefit of discontinuing her medicines is that her speech has picked back up again. Today, we saw only one or two odd episodes and we heard a lot more talking. She is also much happier and more attentive as well! Praise God!!!!
We had a wonderful weekend, especially knowing the good results of the EEG, because Katie and Papa flew to Atlanta from Wilmington and we met them there. We stayed with my brother Dana and his family in Atlanta and had lots of fun. The only negative was that Dan stayed in Wilmington because he was too busy with finals to break free. Other than that, it was a wonderful weekend. Katie had a blast and has decided that she wants to start skateboarding at home (she borrowed Will's skateboard all weekend). Tim and Will (Dana's kids) ride Waveboards now (those things with two wheels that seem impossible to me to ride) and are quite good, so Will didn't mind sharing the skateboard. Heather (Dana's wife) was a great hostess and made everyone feel comfortable with her good cooking and hospitality. It was tough to say goodbye on Sunday but it was great to see everyone.
Amanda's therapy today was probably her best yet. Last night, she learned how to get to a sitting position with her cast on by throwing her right hand and shoulder forward. Once she figured it out, she wanted to keep practicing it. Today, she showed off her new skill for Dory and Mary Rebekah (her therapists) as well. See the video below to see her practicing her skill. Amanda continues to be in good spirits and find ways to use her cast as a toy. She has found it to be very effective at smashing things like cereal and making lots of noise. It is also a very effect tool for waking up people who may be sleeping or napping when they should be playing (especially around 4:30 am). When she combines wacking you in the head with a cast and squealing at the top of her lungs at the same time, I would venture to bet there is not a more effective alarm clock on the market. Seriously though, I am so proud of how hard she works. She is definitely not a quitter. She has made a lot of positive progress with the right arm and uses it with increasing frequency. We are looking forward to more progress in the next two weeks.
Here is the video of Amanda showing off her "get to a sit" skills with a cast on. She could do this before we came without a cast but the cast made it harder to do so she had to figure out a new way to do this. She is having lots of fun practicing.....
Amanda was a little off on Monday but came storming back with a great day on Tuesday (today). She is using her right arm more every day and is very engaged with the therapists. She is getting a good right arm protective reflex as well. Today, she got to play with and eat whipped cream, play in water, and to perform all sorts of therapy drills. Right now (9:55pm) she is squealing at the top of her lungs. I really hope we make it through the month at the apartment without being evicted for noise violations. The other night she was squealing at 12:30 am. I am sure the neighbors really appreciate us. Oh well.... Amanda is making good progress and that is all that matters. Enjoy the pictures.
Amanda had a great day today in therapy. She used her right hand more. She started mimicking the therapist, Dory. She actively pushed with and pulled with her right hand at times. She did great weight bearing on her right side. And she had lots of squeals and giggles. Enjoy the pictures....
As you can see, she is practicing weight bearing, actively using her hand and arm in coloring, eating, and playing, and even holding and holding crackers all by herself with her right hand!
FYI - Amanda's hair is wet in some of the pictures from her bath -- the therapy is intense but she really isn't soaked with sweat ... yet.
Amanda has tomorrow off and then she is back at it 6 hours per day Monday - Friday each week for the next 3 weeks. Have a great day. If you need to reach us, our phone number in Alabama is 205-298-9881.
