Do you know the Ice Cream Man?

Ellie does! She has been trying to catch him for weeks and we finally succeeded this afternoon. Enjoy the pictures of her devouring her treat - yes, she ate the entire thing!





And cause we can't leave out our Ethan...I have been trying to get a picture of this forever and always forget to bring the camera when I put him to bed. Love the bum in the air!

Ellie News

I just wanted to update all on Ellie's upcoming appointments. I spoke with the Virginia Child Find program and they are going to evaluate Ellie next month (June 22). We should have the results from her speech evaluation (June 1st) at the hospital. If the therapist recommends speech, the Early Intervention program should be able to provide some sessions for her. I also scheduled an appoinment with an Opthalmologist for a week from Thursday. The neurologist wants her to get checked out to make sure that none of the vessels in her eyes were damaged by the stroke. We don't really have any reason to believe that her vision was affected by the stroke, but I figure we need to cover all our bases so we don't discover a problem later that could be treated now.

Auntie Ju Ju has been here this week and is a huge help. As many of you may know she has a pretty extensive background working with children with special needs and she really thinks Ellie is doing great. It really is amazing how well she has recovered. More often than not I forget that it hasn't even been a month since the stroke. The way she is able to run and climb on the playground...it doesn't look like anything happened. She is talking more everyday and is showing us that her memory is still there.

Ju Ju gave Ellie a real "Abby Cadabby" wand for her birthday. It was a huge hit. If you have no idea who "Abby Cadabby" is, google her...she is Ellie is puppet form!

Siblings

He wasn't trying to smack her in the head, promise.

No news is good news

Riding on the scooter.

One of her favorite spots on the playground.

Walking on the tight rope.

He's thinking about crawling...we just haven't found the right motivation.

Big man on the swing.

Sorry for the lack of posting lately. There really is not much new to report. I think that is a good thing, right. Ellie is doing really well. She is not having any issues with her motor skills and the speech seems to be improving slowly. Tim and I both noticed her making comments to us that she always used to say. Her personality is definately there. If anything, she is much more cuddly now. We will see if that lasts. Auntie Janelle spent the week with us and we had a lot of fun at the playground and shopping. No new appointments, but we did schedule the follow-up MRI at Children's National for the end of June. Hope you enjoy the new pictures.

Now for the update...

I got a call today from the pediatric stroke specialist, she has decided that she would like to do another MRI to get a closer look at the area of the brain that was affected by the stroke. She said we don't have to worry, that she didn't see anything unusual on the original MRIs, she just wants to confirm the exact location of the stroke. When we went to see her she was surprised that Ellie's motor skills had returned so well. See, she suffered from a basal ganglia stroke (this is how they describe the area of the brain that was affected) and usually these strokes have a pronounced effect on the child's motor skills. Ellie, on the other hand, seems to have had her speech most affected. This could mean nothing, especially since Ellie's recovery has been so positive thus far (she is talking more and more each day), the specialist just said that Ellie's case would be unusual. Well, we already knew that! This girl doesn't fit into any mold! I will keep you posted as soon as we know when the MRI will be scheduled. I am off to bed so I can get up early with Ethan and make my girl some chocolate cupcakes (Abby Cadabby wrappers, of course) with hot pink sprinkles!

Happy Birthday Baby!

Wow! We can't believe our baby is already three! What a year it has been! From the birth of your baby brother, to leaving our "Massachusetts house", to your new adventure with your stroke. Your are our uniqe girl through and through and you can handle any situation that is thrown at you. We will miss these days where all you want for your birthday is a balloon and chocolate cupcakes, but can't wait to see what adventures are coming your way! Smoochies for my girl!

Ellie Sings!

Ellie Update...

"Reading" To Ethan

Great news from the specialist today...she had nothing but positive things to say about Ellie's progress. Both mom and I were very impressed with the doctor (she was working recently in Boston, so she has to be good, right). She seemed to really understand childhood strokes and explained things to us really well. She answered all our questions and didn't rush us at all. Ellie is scheduled to see her again in July for a follow up. She is going to locate the blood test results for us (I spent more than an hour on the phone yesterday trying to track them down with no luck) and is going to work with the neurologist that we saw while in the hospital to get a better idea about Ellie's case. She also got us an evaluation with a speech therapist (another item that I was having difficulty with) in a few weeks. She wasn't able to look at the images of Ellie's MRIs in the office, so she said she would look at them on her laptop and get back to us soon with some more thoughts. So, here is basically what she said:

*She thought Ellie looked like she was doing "very well" for being only 10 days post-stroke. She looked at her walking and hopping and said she appeared to have a slight delay on her right side, but that it wasn't significant.

*She agreed that she should have her vision checked by an Opthamologist so that we can see if there are any issues with the vessels around her eyes. So this is my next task and I will try and set up an appointment today.

*She didn't think that she would need any Physical Therapy, but said if we wanted to have an evaluation done that the therapist could suggest some exercises to do at home.

*She strongly recommends the speech therapy (which we are not suprised about since her speech seems to be the biggest challenge). We will have an evaluation done June 1st and then schedule as recommended, hopefully closer to home.

*She also recommended occupational therapy. We have a number for a therapist at the hospital where Ellie was initally treated, so I will also be contacting them this week for an appointment. We did see them twice while admitted, so hopefully getting an appointment will be easier than it was for the speech therapy.

*She actually said that the majority of cases that occur without a cause have a higher success rate for recovery and have a lower risk for re-occurance, so eventhough it would be difficult to never know why this happened to Ellie, if the results of the tests continue to come back inconclusive, we can hope that the worst is behind us and concentrate on her recovery.

*She also said that if they can't locate a cause for the stroke, if it is an isolated incident, that we really don't need to worry about Ethan suffering from one (his odds are no greater than any other child - and we know this is rare).

*We should know some more detailed information in the next few weeks. The doctor told us she would contact us after she reviewed the MRIs and bloodtest results. I am most curious about the area of the brain that was affected and exactly what things it controls.

*She also agreed that sending Ellie to preschool in the fall is a great idea and she should do really well. Most kids she has seen in similar situations have really improved in a school setting.

All in all, it was a good day. Both kids were troopers...it took 2 hours to get to the hospital! They were really well behaved and were exhausted by the time we made it home. I think we will all be sleeping well tonight. On that note, Ethan has been sleeping through the night (well, at least until 5:30 or 6am) nearly every night since we came home from the hospital - such a blessing!

Not Much News

Sorry for the delay in updates...not much has changed the last few days. Ellie is using her right hand more, especially when eating. She has quite an appetite and is not having trouble asking us for food - especially chocolate donuts (can you tell Pop was here this weekend!). Her speech hasn't increased much, although we have noticed that she does "talk" to Ethan. Everytime he comes in the room or vice versa, she just starts babbling at him. We think it might have something to do with the fact that he doesn't pressure her to talk...while we are always asking her questions and asking her to repeat things...maybe we should try Ethan's approach. Hope to have some news on Wednesday. We are heading into DC in the morning and aren't really sure what to expect from our appointment with the stroke specialist. We have started our list of questions and hope to get some advice about therapies.

On a positive note, Tim and I attended the open house at Ellie's preschool tonight. I registered her in March at St. Matthew's Day School for a Tues/Thurs. three-year-old class that starts in September. We have been talking about going to school for months and I think she was actually starting to get excited. We had the opportunity to talk to the director about her current situation, but she didn't seem too concerned and actually said she thought Ellie's speech could only improve within a school setting where she will have the opportunity to talk to her peers. We wil make a final decision in August, but as of now we are still planning on sending her.

Ethan going after Wynn the Dog.

If your happy and you know it...

She loves her stroller!

Ellie "reading" her Dress Up book with Nana. She could probably "read" about 75% of this book before. We are thrilled that she knew so much!

Pediatric Stroke Information

I finally have a chance to do some research into pediatric stroke. I wanted to pass along some websites that I found if anyone is interested in some more information. We were told that this is rare, but I didn't quite know what that meant until I found some statistics...pediatric stroke can occur in between 2-12 / 100,000 children. To give you a little perspective, that would be 12-72 people in the city of Boston (with a pop of about 600,000)! We have always known Ellie was unique! I have already joined a email listserve of parents of children who have suffered from pediatric strokes.

http://www.pediatricstroke.org/
http://www.strokecenter.org/peds/
http://www.pediatricstrokenetwork.com/

If anyone has any questions, or if you want to know anything specific about Ellie, please feel free to comment here on the blog and I will do my best to answer.

Thanks again to all for your support!