Tuesday, August 2, 2011

Just Cruising

I haven't posted much lately, but it's for a good reason - there isn't much to post!  Scarlett is feeling pretty good, though still not 100%.  Her tube has stayed down (of course, since we now know how to replace it!)  She is still neutropenic (immunocompromised); she is likely going to need another blood transfusion later this week.  We are hoping that this is the last week we have to give her the home injections to boost her bone marrow activity to produce white blood cells.

We visited the audiologist because her hearing aids were making a lot of excess "feedback" noise and didn't seem to fit...and they don't.  She has already outgrown the first set of ear molds.  In less than a month.  Plus, we are encountering trouble with the way her head tilts to the left; her left ear rubs on her shoulder, shirt collar, car seat strap or hood and knocks the hearing aid out.  So, we are hoping a new ear molds will stay in better.  Since it has been such a short time, the next set will be considered a "remake" of the first, and won't cost us.  Yea for growing!  Boo to complicated fitting!

We are scheduled for an evaluation with the early intervention program tomorrow, so we are hoping that leads to some more support.  We still haven't heard about many of the services we are trying to get organized, so it is about time to get back on the phone.

Two special requests:
  • Tomorrow, baby Hailey is having surgery to remove a brain tumor in Atlanta.  Her mom Ashley e-mailed us recently.  They don't yet know if the tumor is malignant, or what will happen next, so our thoughts are with them as they wait through surgery and travel whatever road is ahead for them.
  • One of our new glioblastoma buddies, Faylynn, is having a fundraiser.  She was just three months old when her tumor (the same kind as Scarlett had) was 75% removed.  She had a stroke after surgery, and is not able to walk.  She is now three and doing very well - so well that she has outgrown her current equipment and is moving to a bigger wheelchair.  Her house is not yet wheelchair accessible, so her community is holding a spaghetti dinner to raise money for a wheelchair ramp for their house.
If you can help Faylynns family, they are accepting donations. You can write a check out to: Faylynn Benefit
And mail to: Sebasticook Valley Federal C.U.
P.O. Box 145
Newport, Maine 094953 

We have been very blessed by the generosity of our readers.  We wish we could help them, but we're hoping that posting here might help them a little!


Christa said...

Glad to hear all is going well at your house! Your family as well as the others you mentioned are in my thoughts and prayers. Good luck with your phone calls! :)
- christa, oct. 2010 mom

Magnus said...

We had a lot of support from our coordinator at CHOC Oncology with all the early intervention. If you have any specific questions, let us know and we can try and help. My wife is the expert in this area, but I can pass any questions on to her. ;-)

Megan said...

Glad to see she's feeling a little better. Good luck with the phone calls!