Tessa These Days

I thought I'd write a little about what things look like for Tessa these days:

• She is still on Trileptal, 0.75 mL 3 times a day for seizures - we like to think that these are starting to correct themselves and will hopefully find out more at her follow up neurology appointment on 9/16.

• She is still on Prevacid, one dissolving tablet a day for reflux - we have seen improvement with her reflux too and she is handling more and more activity and tummy time!

• I'm not sure I've ever mentioned it on here, but Tessa has been on a 1 mg tablet of Melatonin for about 5 months. This has been our saving grace! At one of her appointments before she turned one, we happen to mention to her doctor that we had spent the entire last year up with Tessa every night until at least midnight if not later...needless to say we were desperate. Her doctor told us that kids with sensory issues sometimes need an extra dose of Melatonin to help them 'shut things down' and learn to distinguish night from day. He also said that kids with brain damage sometimes lack the appropriate levels of Melatonin in their brain to help them go to sleep....so with both points being applicable for Tessa...adding Melatonin to her evening routine has been the ticket! It has been such a blessing to watch her have peaceful evenings and slowly prepare herself for sleep....instead of stressful evenings full of moments where she gets scared and trying to get her to calm down and finally rest.
  

As of her 15 month check up appointment on 8/1/11 (we were about a month behind):

• She weighs 18 lbs 10 oz and is 29 3/4 inches long - because of how long she is, she is wearing 12 months clothes in a lot of things...but her little waist is so tiny that she still has lots of 6-9 month shorts/pants and skirts that fit her too :)
  

• She is now taking Lactulose, 2.5 mL twice a day - this is to help with constipation as a result of her diet and some affects of the Cerebral Palsy -- we are hoping to start seeing some weight gain since starting Tessa on the Lactulose, so far her appetite has seemed to increase a little and she struggles a lot less when trying to potty. Now she'll go without having to be in her stander and the help of gravity ;)
  

• She is still taking 4 oz bottles of formula about every three hours with rice cereal mixed in - she has been on Gerber's Good Start Gentle formula for months now and has been doing really well with it - formula will be Tessa's main source of nutrition for quite some time, it has been so nice to find one that agrees with her and is easy on our pocket book too ;)
  

• She is doing so wonderful with stage 3 baby foods - we still have to run a few of them through a hand-held food grinder, but she is doing so much better with changes in consistency and textures

• She definitely eats a good lunch with meats, fruits and veggies every day and depending on our evening scheduling, we've been doing our best to incorporate dinner too

• Kind of exciting...we are brushing Tessa's teeth! She has had such an aversion to 'weird' stuff in her mouth...and it took her a little bit to get used to the idea...but now, brushing her teeth is routine!! YAY!
  

On the therapy front:

• She has physical therapy twice a week: Mondays and Thursdays

• She has Auditory/Verbal therapy once a week on Tuesdays - she's doing really great with her right CI and enough time has passed now that we will start putting her left hearing aid back in too
  

• She has vision therapy once a month - she has a follow up with her ophthalmologist on 9/14 - hopefully we will address the laziness in her right eye and try and get a solution for that
  

Tessa's physiatrist would like for us to add Occupational therapy for Tessa once a week through the Children's Center as well. We've been thinking about trying to work that in with Victoria during the week somehow.
We are about to meet again with Tessa's SoonerStart Resource Coordinator to write her new IFSP (Individualized Family Service Plan). It's really hard to believe it's been almost a year since we wrote her original IFSP after finding out her diagnosis.

• We are still waiting on Tessa's Rabbit stander and her Manatee bath chair. Both orders were put on hold because of insurance authorization issues...but hopefully that has all been resolved and we will be receiving her own very soon!

• Tessa has just about out grown her first pair of DAFOS! We will be making an appointment very soon to get her fitted for a new, more sturdy pair.

• It's time for a medical stroller ~ we've gotten the most we can out of the strollers we have...but they just aren't cutting it anymore. We will be getting some demos (hopefully this week) to try out and see what we like. It's been 6 months since we submitted our orders for the stander and bath chair...so we need to get with it on this stroller deal if we want to have our very own any time soon. Hopefully we are trilled with one of the ones we are able to demo and are able to make a quick decision to order one. It has gotten very frustrating to watch Tessa be so uncomfortable in her strollers...it will be really really nice to have one support her in all the many ways that she needs support!!

It's really hard to believe Darin is going back to work tomorrow and Parker is starting school. We are very excited to share that we have our nanny team in place too! Ms. Kayla will be joining our team, handling Mondays, Tuesdays and Wednesdays and Ms. Victoria will be handling Thursdays and Fridays! Kayla had a chance to spend a day with Darin this last week and Ms. Victoria will be working with her all day tomorrow on her first day! It has been incredible to watch the Lord's provision in our lives. We couldn't be more excited about these two precious young ladies that will be taking care of Tessa. We couldn't have picked a better team to love and care for her and challenge and motivate her through this next season of life!!

~Whitney