The Davis Family

We just returned from being in Boston for 4 days. We enrolled Anna in a clinical trial at Boston Children's Hospital entitled "Early Diagnosis of Autism in Children with Tuberous Sclerosis Complex." Kids with TSC have an alarming 60% chance of developing autism and we decided to enroll Anna in order for her to get additional neurodevelopmental testing. We wanted second opinions on her development and whether she would benefit from any therapy, as we know that early intervention is key for all developmental delays. We also wanted to meet with Dr. Sahin, the pediatric neurologist that runs the TSC clinic at Boston Children's, who is one of the most renown doctors in the country. Again, we wanted to make sure we were on the right track with all of Anna's current treatment and make sure he would do the same thing regarding weaning her from her current medication and at what time frame he would do this. We will have to return in August, when Anna turns 2, and one more time next August when she turns 3.

In a nutshell, we feel that we got really good news. She did have an MRI, which she will continue to have yearly. The results of the MRI showed that she hasn't had any change in the growth of her subependymal nodules, which is AWESOME! These little nodules surround the ventricles in her brain (the fluid filled cavities) and in some kids can grow into larger tumors (called SEGA's) and although they are benign they can cause major problems because they block the flow of the fluid throughout the brain. She does have 2 nodules along with the many tubers, which have remain unchanged in size and will have to continue to be monitored.

She also had 2 different EEG's that were very short (only 15-30 minutes each.) Although Dr. Sahin said he would like to see results from a longer EEG, and specifically one from when she is sleeping, the results of her EEG were normal. We will take this good news because we know it can be abnormal even in a short period of time, which hers was a year ago when first diagnosed.

She also had 2 different days of developmental testing in which specific tests were administered that consisted mostly of "play therapy." She scored normal in all developmental categories except for expressive speech, which is the words she can actually say. Since she can only say 4-5 words, they put her more in the 14 month age range than the 18 month age that she actually is. We also know that speech can be so extremely variable at this age as some kids are talking and some really aren't. I know Emma didn't really start talking until much closer to the 2 year mark and then it was an explosion, which we can only hope for Anna. They recommended speech therapy to work on this and we have already started the process of getting her started. Our county provides an awesome speech therapy intervention program, however wait times can be up to 2 months to get started. So it may be a bit before we actually get started.

The one upsetting part of the trip was that the testers told us after all of their testing that Anna fell in the autism spectrum by 1 point. Immediately after saying this they said, "BUT if you ask either of us we really don't think she is autistic at ALL." They administered the autism test first thing Monday morning and apparently it took Anna a little bit to warm up to them (hello stranger anxiety at 18 months!!). They said that on the second day she did a ton more social interaction and eye contact that would have completely taken her off the scale but they couldn't give her credit for it because it wasn't in the 90 minute test time frame. They also said that her lack of expressive speech is what also puts her over the line. Anyway, I was at first really upset to hear this word but am very confident that Anna should NOT be in this category. She is very social, interactive, has great eye contact, smiles all the time, and the list goes on. I think the testers actually felt bad having to say that she fell on the scale by 1 point because they went on and on about how they didn't feel she is at all. Anyhow, we can only hope she proves them wrong on the next visit:) For now, we are happy with all the good things she did!

We also managed to do a few fun family activities while we were there. The Boston Children's Museum was probably the highlight of the trip. It is a very fun and interactive museum and both girls loved it! Enjoy the pictures.

A couple pictures of Anna that they took for us undergoing her EEG. This one was awesome because it was a hat with all the electrodes attached which was so easy to put on. Usually they have to attach each individual lead and it takes forever and she screams bloody murder. Love the hat!!

Watching the video monitor

All packed up - those carseats sure added to our load this time!

Emma riding the train, which she says was her favorite part of the trip.

Emma posing in front of the Charles River

Fun times at the museum

Anna found a chair just her size

Fill er up!

Emma and daddy trying to chase the butterflies

Anna carrying a life size checker piece

Emma crawled all the way to the top of this 3 story maze!! She had a hard time finding her way down and mom was a bit scared that she would have to go in after her!

This machine pulled a huge bubble up to completely surround her. She LOVED the bubble room!

Look up there Daddy!

Sam Adams

Quincy Market was so much fun. It was filled with tons of restaurants and shopping. We ate at Cheers one night, too!

Our two very own crabby kids:)

Emma just started swimming lessons today. She did a great job in her first class and apparently is NOT afraid at all to put her head underwater.

Emma and her pal Hannah

I also just got some new photo editing software and although I haven't been able to try it as much as I would like to, I have created a few awesome pictures. I can't wait to learn more about it!

Anna insisted on wearing mommy's coat!

We have been recovering from yet another bout of sickness in the Davis household. Anna had croup along with a fever for about 6 days and is now just kicking her runny nose after 10 days. Her fever got as high as 102 (which made mommy a NERVOUS WRECK!), but we are glad to know that she is on the mend and able to combat a fever without a seizure:) She so graciously passed her cold on to her big sister Emma who is also now feeling better.

Nana came into town this past Wednesday night to visit and this weekend we decided to take Emma to Reston Town Center for her first time ever ice skating. She had a great time and daddy did a commendable job helping her around the ice rink. It was super cold out and actually snowing that day, which made for a perfect setting! Nana helped by keeping Anna entertained in the stroller so that I could snap a few pictures. Enjoy!

These first two are random pictures of Emma in her curlers. She loved them and even slept overnight with them. It was fun to try them in her hair (although I don't have a picture of how cute and curly it made her hair) and reminded me of being a kid when my mom put the foam curlers in my hair.