Monday - Busy Day

Gracie had a somewhat restless night, but awoke in a good mood and was ready to start the day. She was a happy girl when I took her to daycare and was full of smiles. While at daycare she had one of her mondo bloody noses. They are scary because she loses quite a bit of blood and it takes a long time to get them to stop. I called the pediatric nurses to see if they had any advice other than running a humidifier and lubricating her nose with Vaseline, which we do already. After going through a series of questions, they really felt she needed to be seen. So we headed to pediatrics to get her checked out. Because she bleeds out of both nostrils, it's not just one that is always the cause, they don't believe they can cauterize her at this time. So the advice was to have her tip her head forward, pinch the bridge of her nose, and if the bleeding doesn't stop for 30 minutes to bring her right in. If these start to occur more often, we will need to have her checked for anemia as well.

We came home, Gracie took a nap, then we had a meeting with Gracie's early intervention teacher, physical therapist, occupational therapist, speech therapist, and their supervisor from the Birth to Three program through the public school system. Gracie just went through some standardized testing and this was a report on that and to talk through a plan for where to go next. Gracie made her way around and sat on just about everyone's lap and interacted well. Although the report was very accurate to her skills, it was hard to see the standardized scoring. Gracie does not do well with that. She was rated as "far below average" on cognitive skills, fine and gross motor skills, and adaptive/functional skills. She was rated as "low average" for social-emotional skills. Her communication skills are at a 18 month level for comprehension and a 22 month old level for expressive communication. While I agree with all of the observations of the Birth-to-Three team, it's still hard to see it on paper, especially when she is making such great strides. Couple that with Gracie is not motivated to do many of the skills asked of her in the standardized testing. We are going to take a new approach with her and I love that the team suggested this. It's a more routine-oriented approach for goals for life skills, such as routines based around getting ready in the morning, coming home at night, etc.

While it may be difficult to see "far below average" on paper, Jeff and I are both realistic. We know she has the ability to learn, we know we have to work hard with her, but we also know she learns through repetition and experiences. We are dedicated and enthused to continue to give her the quality time she needs to learn. From what I have learned about Sotos Syndrome, Gracie seems to be on the more high-functioning side of the syndrome. We are "Team Gracie" - her biggest fans, her biggest cheerleaders!

On a fun note, Gracie loves a specific Brad Paisley cd. She listens to it quite a bit. Tonight we had it playing and she went up to the cd player and said "tick". We asked her what she wanted and again she said "tick". She said it a few more times before it dawned on Jeff and I that she wanted a song that says something about "checking you for ticks". We turned that one on and sure enough, that is EXACTLY what she wanted.

Gracie had a great time splashing in the tub and it was just the thing to tire her out for bed. She was exhausted by the time 8:00 p.m. came around. She is now sleeping peacefully.

Love,
Lisa, Jeff, and Gracie