AAC Trial

Natalie is currently in her third week trialing the Vantage Lite, an AAC (Augmentative & Alternative Communication) device from an awesome company called Prentke Romich. These type of sophisticated communication devices have opened up the world of communication to many children and adults with disabilities who otherwise would not be able to, or would have significant difficulty, interacting with others. I understand they are widely used for children with neurological conditions such as CP but also for children with Autism and a variety of other disabilities which negatively affect the ability to communicate verbally. Normally, if the trial goes well and everyone agrees that there will be significant benefit from its use, we will place an order for Natalie to get her own! In case some were wondering, the fact that we will likely be going this route does not mean that we have in any way given up on Natalie being able to communicate verbally. Research has shown that AAC devices actually facilitate speech skills and many kids start speaking more, and more clearly, after using an AAC. I am very happy to report that Natalie has very quickly picked up on how to use her device to communicate some basic wants and needs. It was exciting to see that she seemed to really "get it" from the very first day. Below are some short videos of Natalie using the Vantage Lite during meal times. Just a note that this is a very complex device and the way we are using it now is in just the most basic way. See Fighting Monsters with Rubber Swords to learn about Schuyler, an older child who uses this same AAC device in a much more sophisticated way. This will illustrate the possibilities this device will give Natalie over the next several years.



**Please excuse Natalie's crazy hair in the last video. Someone who I won't name but who babysits for Natalie 2 days a week must not have felt the need to comb Natalie's hair that day. I suppose it makes sense knowing that this same person did not willingly brush her own hair until she was about, oh, maybe 10 years old!

Oh, did I forget to tell you? I know my colors.

I got a pleasant surprise at Natalie's Occupational Therapy session last week. Her therapist was working with her on stacking blocks and started asking Natalie to get certain colors to stack next and I was amazed to see her get it right nearly every time. It seems that she knows green, blue, red and yellow. I had no idea. I wasn't prepared with my camera at the time so this week I made sure that I had the camera ready to get a video or two. She was not really motivated to do the stacking this week as you'll notice but who cares -- SHE KNOWS HER COLORS!

Neurology Update

On January 21 Natalie went to see her favorite Neurologist, Dr Franz.  Really, Natalie probably would not call any doctor a "favorite" but if I had to pick one it would probably be him!  I like that he always seems to be truthful yet definitely puts the focus on the positives!  He also takes the time to really listen to parents and seems to value and consider their input.  On this journey, I have learned that this is truly a rarity among pediatric specialists!  Del took Natalie to this appointment so I did not get this information firsthand but it seems that Dr Franz gave Natalie a GREAT report at this visit.  
To summarize:
-Natalie looks to him to be getting close to walking.  He took notice of her much improved balance since her previous visit. 
-She had an EEG after her previous visit and this was negative for seizures.  She still is at increased risk for seizures due to her previous brain bleed and resulting damage, but the older she gets without having any seizures the better the odds that she won't develop a seizure disorder. 
-He believes that she is definitely trying to communicate with us in words but is just not able to get them out correctly and consistently.  Natalie apparently became very talkative during her appointment and told him one of her long stories!  Dr Franz thinks that the communication device that Natalie will soon be evaluated for will be a great thing to improve her ability to communicate.  It is clear that her receptive language skills are much ahead of her expressive language skills.  (Not sure he said that last part exactly but this is pretty clear if you spend any time with her).  I will do a separate post about communication soon. 
-He supports getting another opinion on Natalie's vision and affirmed my gut feeling that vision therapy is probably not worth the time and money at this time.  Natalie has had a prescription for glasses since this fall from her Ophthalmologist but no glasses yet.  A second opinion from a developmental Optometrist was to hold off on the glasses for now and do vision therapy (which they do in their office for a rather hefty fee and not covered by insurance).  So in order to get a 3rd tie breaker opinion, we are going to be seeing an Ophthalmologist in Cincinnati. 

I feel like I am forgetting something so if I am, and I remember it, I will edit later!

Being Real

I have been thinking a lot lately about my blog reading habits and about what I want this blog to be.  Mainly, I've realized that the blogs that I enjoy reading, for the most part, combine several common elements: 
-documentation of everyday accomplishments/special events
-reactions life events and/or challenges
-interesting or funny stories about everyday life

Up until now I don't feel that this blog has really met my own "good blog" requirements so I plan to change that.   No one expects to have a child with a disability but the reality is that it happens all the time and it involves major lifestyle adjustments and a lot of emotion, both good and bad.  Over the last 3 years I have benefitted immeasurably by reading other blogs about kids with challenges similar to Natalie's.  This includes the stories of other micropreemies and kids with Cerebral Palsy (CP) and other disabilities.  It has made me feel less alone and given me a lot of hope for Natalie's future.  I want to be honest about Natalie's disability and how it affects her.  Also, I'd like to educate family, friends and other blog readers a bit more about CP.   But don't worry - I still plan to celebrate her accomplishments and post tons of pictures of my sweet girl! 
So look forward to more posts about Natalie's therapies and therapy goals, equipment, and general development.   I'd love reader comments on topics that you would like me to cover in future posts or just questions that you have about Natalie and her development.  Don't be afraid to ask anything you want to know!