Things are going pretty well. ELLIE has settled in nicely and is quite fond of Amanda, and vice versa. Amanda has an ear infection and a cold so ELLIE has been extra attentive toward her. ELLIE likes to lay her head on Amanda's lap whenever possible and in the car, she puts her head right next to Amanda's head and "hugs" her. It is very sweet! ELLIE is doing well on all of her command drills like "get meds, light, sit, down, stay, shake, stand, turn, wave, get, here, closer, wait, give, hold, up, on, etc, etc." Amanda is already petting ELLIE when asked. Everyone agrees that Amanda is much more attentive and able to follow directions now than ever before. She waved bye-bye a bunch yesterday when asked. She was particularly enthusiastic at waving bye-bye to the doctor. As soon as Amanda feels better, we will begin working more and more each day with ELLIE. I think ELLIE will be a big motivator for Amanda.

School starts for me and Dan on Thursday so things are busy with planning our courses etc. Katie also starts Thursday and is quite excited about her new school. We have a lot of meetings and commitments this week and next, but things will start to calm down by September. Unfortunately, we all have the same cold Amanda has so that puts a little damper on things. At least we are all getting through it at once though.

Well, I had better get back to work. Have a great day!
God Bless!
Susan

ELLIE and Amanda Together at Last

It has been a long summer with some real ups and downs but we are ending it on a wonderful up! ELLIE arrived Sunday and we spent all day Monday, Tuesday, and Wednesday doing transition training. We went all over town in restaurants, stores, etc and ELLIE did just great. It was really fun for us too since we hadn't eaten out much in Wilmington in the last 4 years. Kyria and Terry were wonderful (as always) in helping to train us to work with ELLIE. There is definitely a lot to think about. They left this morning to go back to VA so this was the first day ELLIE was here without their help.

ELLIE went to work with me today so that we can increase our bond. She did GREAT! Most of the people who came in my office today were not aware that she was sleeping under my desk :-) ELLIE will be with me just about all of the time for the next week and then will stay with me most of the time for the next month so that we can solidify our bond. Amanda has been petting her and giving her treats and bonding as well. They enjoy their time together. We will wait until the bonds are strong before we include ELLIE in Amanda's therapies. Kyria and Terry will be back in October to help work with Amanda's therapists. I will post pictures when I get the time (this is our crazy busy couple of weeks with school starting etc).

Amanda is doing well. She was pretty silly while Terry and Kyria were here so that was nice. She is still bruised in her groin from the angiogram but it is healing up. She resumed her therapies today and had a good session with her speech therapist. We did find out that some of Amanda's blood tests did not get run due to a lab error so we will be doing some more blood work over the next couple of weeks. So far, only one blood test came back slightly abnormal. It deals with how well the body can break up a clot once it forms. The test was normal in the first test and slightly low in the second, so we will be doing a third to see if it is an issue or not. We will go back to Hopkins in 6 mos unless we need to meet with a hematologist sooner.

Other than that, Dan & I are just frantically getting ready for school to start. Hopefully we will have our syllabi complete before school starts :-). We hope you are all doing well. Thanks for all of your love, support and prayers!

God Bless!
Susan

Home Sweet Home :-)

We got home last night. The visit at KKI was very informative and it gave us some good things to work on with Amanda. Today is a day of catching up on work, mail, sleep, etc. I will post more later, but I wanted to let everyone know we are home safe and sound. God Bless!
Susan

Blood Test, Jonas Brothers Concert, ELLIE, Etc

Most of the blood tests are in and are negative. Only one remains. We should hear on that one soon. Then we will talk to the doctors and figure out if we do anything differently moving forward. We will keep you posted.

Katie and Dan just walked in from the Jonas Brothers Concert. They had a great time. Katie is still really keyed up and says the concert was just "Awesome!" She has a big crush on Nick so we have heard a lot about Nick tonight. Interestingly, Dan also said it was a great concert and that the Jonas Brothers are both very talented and very entertaining. That is quite the compliment coming from Dan, who is more of an old school rock guy. I have only heard the name Jonas Brothers about 412 times in the 20 minutes that they have been back (Dan =6, Katie =406). It is great that they had such a great time. I am glad Katie got to do this after giving up her tickets to the Raleigh concert. She is quite a kid!

We also heard this week that Kyria and Terry from paws4people foundation will be bringing ELLIE down to Wilmington Aug 10-14 to finish up our "boot camp" training with her. The training will cover all that we missed when we had to leave WV. They will come back in Sept to help work with Amanda's therapists so that they will be better trained to utilize ELLIE effectively in Amanda's therapies. We are quite excited that they will all be in Wilmington so soon after our return.

We head to KKI tomorrow for a 4-5 hour morning appointment. After that, we head for Wilmington. We hope to get part way tomorrow and then get into Wilmington on Friday. It will be nice to be home. Everyone is looking forward to sleeping in their own bed. We will keep you posted on the events in the days ahead.

Have a blessed day,

Susan

Still Hanging Out in Baltimore

The blood draws are now over (4 more vials taken yesterday) and all that is left medically for this trip is our appointment at KKI on Thursday. We are blessed that they had an opening so soon. We will head home Thursday night or Friday. After 3 weeks in a standard hotel room, I think all will be happy to return to Wilmington.

Tomorrow is the big day for Katie - she and Dan are attending the Jonas Brothers Concert at the 1st Mariner Arena in Baltimore. It is directly across the street from our hotel so it couldn't be more convenient. She is quite excited.

The article in Wrightsville Beach magazine regarding Amanda, ELLIE, and paws4people and paws4prisons came out this week. The link to the article is http://www.wrightsvillebeachmagazine.com/article.asp?aid=403&iid=56&sud=27
The author, Skip Maloney, is such a nice and kind person. We look forward to keeping in touch with him in the future.

We don't have too much planned for today. Hopefully, we can catch up with Grace and her family later in the day. Grace has therapy at KKI this week and brought COLT with her for the first time. We had talked about getting together for dinner so hopefully that will all work out. Have a great day. God Bless!
Susan

A Mellow Weekend in Baltimore

We spent the weekend running errands and trying to stay out of the hotel room as much as possible. Both days, we went to different places in the White Marsh area. Amanda wears a mask while we are out but she still really enjoys the change of scenery. Our next door neighbor last night was celebrating his bachelor party so we didn't have to worry about Amanda being too loud with her squealing. She has been amazingly happy the last several days. The video below should give you a taste of how silly she can be....


Dan and I have decided that nothing has really changed with her in the last month - we just know more information than we used to know. We are optimistic that everything that
was going to happen has already happened and that it is not unreasonable to expect that Amanda will continue to progress in her skills and that the problems found in her head will remain stable and never ever cause a problem. After all, she has had this stuff in her head since her surgery at 17 mos of age and she is now 4, and in the interim, she has passed kidney stones, been very active, laughed incessantly, and had lots of fun, all with no problems. It is quite a relief to not be facing major brain surgery right now and hopefully not ever. We have been told that the annual risk of rupture of all aneurysms is 1.3 percent and the shape of hers makes them less likely to rupture, so our odds are even better. Anyway, it has been nice to be able to stop and take a breath after a fairly intense 3 weeks.

We are very thankful for all that we have, including our two amazing girls. Katie is such a loving and understanding big sis. And Amanda is pure joy and innocence. The last few weeks have given us even more resolve to do everything in our power to make Amanda's life even more special. She is such a joy to be around and we have really enjoyed the 3 weeks of 24-7 time with the family.

Tomorrow we do another blood draw for Amanda and then Thursday we to the assessment at KKI. We should be headed for home on Thursday afternoon or Friday morning at the latest. Then we will spend the next few weeks catching up on work and getting ready for the new semester, which starts August 20. We will keep you posted on our happenings.

Have a blessed day!

Susan

A Nice Friday

The blood draw went well today. Amanda is always a trooper with things like that. Her last blood draw will be Monday. We spent the late afternoon and early evening today visiting White March, just to get out of the hotel room for a while. However, I have to say that the managers and staff at the Days Inn on the Inner Harbor have bent over backward to make our stay comfortable. They are all tremendously nice people. We will definitely stay here each time we come to Hopkins or KKI.

Our plans have changed yet again. We called KKI today - they specialize in rehabilitation and therapy for kids with developmental and other disabilities. Their first appointment wasn't until January, but they called back this afternoon and had an inpatient discharge and can see Amanda on Thursday! So, we are staying in Baltimore until Thursday and will head home either Thursday afternoon or Friday.

It works out well because Katie had to give up her tickets to the Jonas Brothers in Raleigh when everything happened with Amanda. Katie was very understanding and didn't balk at all at giving away the tickets (we gave them to a friend from Wilmington). It just so happens that the Jonas Brothers will be in Baltimore on August 6th so Dan is taking Katie to that concert instead. It is a nice reward for a girl who is a wonderful big sister and is very patient with all the things that go on with her sister. I am very excited for her. She is a HUGE fan of the Jonas Brothers!

My parents have finally gotten hotel phobia so they are headed back to Wilmington tomorrow. They were wonderful to have stayed so long with us. They definitely earned parent of the year awards.

We will keep you posted on our happenings. Thanks for all the love, prayers and support. God Bless!

Susan