Tuesday, September 20, 2011


I have not had as much time to blog as I used to.  When Scarlett was in the hospital for (what felt like, at least) weeks on end, I had nothing else to do.  Now, between shuttling her around for appointments (4 this week, each on different days), working on some projects (I've become very crafty since becoming a mom...more to come on that) and trying to keep up with the phone calls, mail and the occasional friend, I just don't have a chance.  Plus, she is ready to be a part of everything we are doing!  
This is the only way we can get things done around the house!
Hopefully things will start to level out and I'll have more time...or less sleep.  Either way, I'm trying for more blogging!

We are two weeks into the new chemo, with one week left to go before a week off, then switch to the next drug..  We give it every night after she goes to sleep. We have to record each dose - date, time, amount, and how she reacts.  You can see on this page of the journal we have been pretty routine about bed time...

Despite the anxiety I feel every time I pull on gloves to protect myself from the toxic syringes, it has been relatively uneventful.  We have found our groove with anti-nausea medications, so she feels better.

We have finally, finally begun a regular therapy schedule.  Scarlett sees a physical therapist and an occupational therapist each week.  She needs to go on two separate days because each is a huge workout for her, and she needs a break after.  Luckily, this therapy is through California Children's Services (CCS) and is at no charge to us, and at a local school that is just a few minutes from home.  When I was looking for private therapy services, I was having a hard time finding places that were designed for children, with kid-size equipment and furnishings.  Our CCS therapy unit is great, filled with tumbling mats, toys, and all the specialized equipment that kids need to make therapy effective yet fun and unintimidating.  Now that we have seen both therapists, we are excited to get past evaluations and begin working on Scarlett's various motor delays.

Occupational therapy deals with fine motor and self-help skills.  For Scarlett, this mostly revolves around eating.  She is a very inefficient eater, sucking on a bottle happily for 30-45 minutes but only getting an ounce or so.  A combination of appetite and motor skills seems to be the root of the problem.  In yesterday's therapy session, the therapist showed me how to massage her top lip down to relax it and encourage her to make a better seal on the bottle.  Next week we will look at how she handles spoon food, and hopefully get some ideas on how to get more into her.  If we can get more food and fluids into her during the day, there is hope we might finally be able to get rid of the NG tube.
Physical therapy deals with gross motor skills, those that involve the big muscles in the body.  Our main goal for Scarlett is to get her rolling and sitting.  Since her movement was so limited while in the hospital, and she generally felt icky for so long, she has not developed all the muscle groups that allow for these movements.  We are doing a lot of leg exercises, tummy time and stretches to make her more aware of her muscles and abilities.  There is no medical reason she can't do these things, and she should eventually be able to crawl, walk and run. 

So far, we're very happy with the therapists and their ideas for Scarlett.  Both are very experienced and knowledgeable.  They don't see a lot of kids like Scarlett with such complicated needs, so they don't really know what to expect from her.  Neither expected her to be so happy, engaging and easy to work with.  It's like she wants to show them everything she can do, and smiles the whole time.

We leave each therapy session with ideas and exercises to work on at home for the next week.  This is the hardest part for me, because it is up to me to work on each task from both therapies every day.  It is mostly done in a playful way, but when you add it to the feedings, chemo, and everything else, it can be overwhelming to remember to hit each area.

I am hoping that it gets to be more routine, just like everything else has.  We have fought hard to get her into therapy, and I want to make sure we are using it to the best advantage to her. 


April said...

Remember to ask for help sometimes. You are amazing for keeping everything straight so far but it's not a failure on your part to need help occasionally. You have three or more full-time jobs going right now; Mommy, Nurse, Physical Therapist and Case Worker. Don't forget to lean on others when you can. <3 <3 <3

Jo Lynn said...

I've been following your little girl for some time, and its amazing what a strong little gal you've got! My son has CP and has 4 different therapies a week, his therapists are like extended family to us now. They make a world of difference. And over time the exercises will just become second nature to you. :)

Chicory Blue said...

Great that you got those services started! Here's a tip (should you ever need it): If it gets to where Scarlett can't go to therapies because of germs and her immune system being depressed....a doctors note that she needs home bound therapy should move the therapies provided by the schools to your house.

smermom said...

You are amazing.

Irene K said...

I LOVE the picture of her and Daddy, that is adorable!! little MONKEY! I am so so so so glad, over the moon glad that y'all are doing so great. Love from Austin, TX Irene