Thursday, July 7, 2011

Hectic Week

This has been yet another busy week for Scarlett and me.  

On Monday, Scarlett enjoyed her first fireworks.  We weren't sure what she would do - cry? sleep? - but she watched the bright colors and flashes calmly from her grandma's lap.  She stayed up extra late to watch the entire display and didn't fuss at all.  She's a party animal!

On Tuesday, we went for her regular labs, knowing she was likely needing a blood transfusion.  I could see she was pale and was bruising easily.  She had gray circles under her eyes and was easily tired, but seemed stable, so I didn't worry too much.  Little did I know she was at the lowest number she has ever hit.  Last month, nurses were frantically calling and chasing us through the hospital for platelets at 10,000; this time she was at 2,000.  They were so low, the lab called up to the clinic to tell the doctors it was an emergency.  A nurse came into the exam room with a bright pink post-it for the doctor to get things in motion as quickly as possible for an emergency transfusion.  

Despite the critical numbers, Scarlett was as perky as ever.  She had a rash on her legs from low platelets, and bruises from that morning's diaper changes, but she was smiling and kicking.  The doctor said that if she hadn't seen the lab results, she never would have guessed the numbers were so low.  There weren't initially enough beds, so she was almost sent to the ER, but luckily her nurse friends in the clinic worked it out and got us a comfy spot.  Because she was so low, they needed to run the blood extra slow to not upset her heart (yikes!) so we ended up being at the hospital for just over 10 hours.  Because Scarlett has had allergic reactions to blood products (both red blood cells and platelets) a few times, she gets Benadryl and Tylenol to avoid any reactions.  This makes her sleep through most all of the procedure.  As soon as the blood was running in, she turned a rosy pink and the gray circles went away.  Since she had had such a long nap during the day, she stayed up extra extra late that night because she felt so good! 

We didn't have much time to recover, because we had physical therapy and speech therapy evaluations Wednesday morning.  We found out that the therapists we are now seeing alsowork at Children's Hospital Oakland, where Scarlett's big surgeries were, and had heard all about her a while back.  When they heard a baby named Scarlett was coming to them, they were excited to get to see her again!  She was a trooper for both evaluations, showing off her newest tricks and patiently allowing the therapists to hold her and play with her.  After that, we decided to stop at the county fair, since we had gotten free tickets a few weeks ago.  Chris and I ate all kinds of greasy fair food (even some alligator on a stick for Chris!) and wandered through the air conditioned exhibits.  It was about 100 degrees, so AC and ice cream were the only way to go!  Scarlett slept in the stroller the whole time - the heat does not agree with her!

Today, we were back at the therapy clinic for an occupational therapy evaluation.  Scarlett was not nearly as agreeable this time, but I think the therapist still got a reasonable picture of what she is doing.  As expected, Scarlett is scoring very low on the standardized gross motor and fine motor tests, as well as with receptive language.  I think they were ready for us to argue with them, or try to prove how much more she could do, but we are just glad that someone is going to help us work on these issues.  The therapists are all developing plans for treatment and ideas for Chris and I to work on at home, but they gave us some quick tips, too.  

  • Physical:  Work on turning head to right and holding in center.  Encourage her to play on her tummy and roll side to side whenever possible, and use routine opportunities, like diaper changes, to practice.

  • Occupational:  Work on grabbing toys and bringing them to the mouth or face.  She seems to have an oral aversion (very common for chemo babies, but not a great thing) so experiment with different textures and sensations around her mouth and face.  

  • Speech:  Practice pointing to objects like pictures, toys and body parts.  Model consonant sounds with our mouths, letting her feel and see how we are making the sounds.  Continue to work on a few key signs to help her begin to communicate what she wants and needs (we are working on mommy, daddy, eat, milk, more, all done).

It's a lot to work on, but we needed a concrete list of things to focus on, so it is very helpful.  Next week we will have the one (and only, so far) session each that our insurance has approved.  We're hoping the evaluations encourage more approvals...

Luckily, we got to end today with a fun play date with my friend Lisa and her daughter Alanna.  Lisa and I have been friends since junior high, and our babies are just 8 weeks apart (Alanna was only one week old when Scarlett was diagnosed, so we haven't visited much).  Alanna and Scarlett and just discovering that the other exists, so it is pretty funny to see them climb all over each other (Alanna is the climber, Scarlett the jungle gym) and play with each other.  Hopefully we will catch a picture of them soon!

Tomorrow, I am wrapping up the week with a flurry of appointments: 
  • 9:45am - Social Security office
  • Noon - blood work
  • 4:00pm - phone repair (of course, as I am waiting for all the phone calls to be returned, our phone mysteriously died!!)
It's been a wild week, but Saturday is my reward - it's our anniversary!


Anonymous said...

Happy Early Anniversary!

shynek said...

Happy Anniversary!! I hope you and Chris get to do something special that reminds you of your early days!! Enjoy!

Haley said...

It never seizes to amaze me how positive you seem to stay through all of this. You are an amazing mommy!

Renaissance Woman said...

Hope you have a great anniversary, Brandi! Sounds like Scarlett has had a busy couple of days! She sure is a trooper! :)

Rebecca said...

I hope you have a wonderful anniversary and I am so glad that Scarlett enjoyed the fireworks! We took our 17 month old to the fireworks too and she loved them. :)

katy said...

I read this today, on your anniversary. I hope you and Chris are able to celebrate a little -- you've been through an awful lot in the last year, and are doing an amazing job at keeping your family strong and centered. Best wishes! xo from NC

Susan said...

I finished my pediatric residency 6 years ago and as part of my training spent a lot of time on the oncology unit. I knew it was tough on the parents, but I don't think I ever really got it until I became a parent myself. I can't imagine experiencing what you are going through with Scarlett, but thank you so much for sharing your journey. Scarlett is lucky to have such wonderful parents looking out for her!

Scroggins Family said...

As a speech therapist, I am very interested in her progress with her speech & language. I look forward to reading more about her development! My advice (although I'm sure your therapist told you this as well!) is don't overwhelm her with alot of new things at once! Pick one or two "goals" to concentrate on each week-2 weeks...I have been following your blog from the very beginning, and my heart just breaks for you and chris and Precious Baby Scarlett! I pray for yall all the time and I am so glad to see that she is getting stronger each day!