Clinic, finally

We had an appointment today for Sophie at the Cerebral Palsy Clinic.  We have waited 2 1/2 years for this appointment.  I know, crazy.  The Dr. that oversees it used to be Sophie's developmental paed, and is again now that we are officially in the clinic rotation.  We really like this Dr. and value her input immensely. 

So we learned alot today.  And Sophie was a star, she sat there quite happily for 2 hours and 15 minutes while we talked.  The most exciting news was that the Dr. felt that Sophie should attend school next year, she will be going into SK!  She also wants her in an integrated classroom, not a developmental class.  This is also what her neurologist suggested 2 years ago when we were starting to think about JK.  We totally agree with them, Sophie is sooo smart and really thrives off the socialization and interaction of the kids at daycare around her.  We all feel that if she was in a developmental class with other kids who are non-verbal and are non-ambulatory who can not easily approach her (kids just like her) that she will not learn and grow in that setting.  She nees the interaction.  Her physical and medical needs will need to be met as well but we will make sure that it is all covered.  I don't exactly melt into the background when it comes to her care ;)  So we have lots to plan, like choosing a school, in the next couple of months.

We were told that Sophie will not sit up unassisted or talk.  I wasn't shocked but I still teared up.  Jason says that she will talk and I tend to agree.  The Dr. said that she will definitely communicate using some type of augmentative communication because she is very smart, we just have to find the right tool.  We will continue to let Sophie take the lead and show us what she can do.  We won't rule out anything and we will do our best to help her reach her potential.

And how I know she can do it.....

This is a picture of Sophie at 19 days old just after she was extubated.  We were told by the Dr's she would not survive extubation, at the very least not without a trach. Hmpph!  The nurses told us that they believed in her.  And so did we.

These are pictures of Sophie after she rolled over on her own at 4 1/2 months.  She was so exhausted she fell right to sleep!  We were told she would not do anything.

We also found out that her seizures will probably stay stable for a while and then become completely uncontrolled at puberty, around 9 years old.  We know puberty wreaks havoc on the lives of many kids like Sophie so that was not a great thing to add to the pile.  She is only on 2 seizure meds now so we can add alot more (some kids are on 7 or more seizure drugs at a time).
Sophie is going through a big growth spurt (possibly seizure med induced) and is now 40 pounds!  She has also grown 2 inches in height since July!!!  Her height is in the 80th percentile and weight is the 75th percentile on the CP growth charts.  Sure beats the 10th-25th where she has been for weight for most of her life!  We talked about lots more but those are the biggies.  We will see them again at clinic in another year or so and see how things have changed!
We are coming up to the one year anniversary of Sophie's 1st seizure.  Not an anniversary I ever wanted to be celebrating.  But Miss Sophie has come a long way and she is so strong and feisty and we have learned how amazing she is over and over again.