Thursday, December 5, 2013

3 Months Post-Chemo

Scarlett has now been off chemo for three months.  She is feeling pretty good, and as busy as ever.  Today she had her first visit to the regular pediatrician in more than a year.  Officially, it was her 3 year well check, but really, it was the right time to go in to begin regular check ups with the regular doctor.

She is right at 30 pounds (that's about 4 pounds gained since August - that's what no daily puke will do!)  We're actually going to be backing off some calories (we've been enriching her meals with coconut oil for several months now) because she's gaining weight much faster than she is getting taller.  It's a balancing act for a kid who can't really monitor her own hunger.

She's had a really runny nose and a rash on her face for several weeks.  Since any fever would put her in the ER (because of her port - any possible infection needs to be monitored closely) she is starting a brief course of antibiotics to help knock out anything that might be lingering.

She is also starting her vaccinations for the third time.  Each time she has started, she has had to go through chemo, which means she needs to be vaccinated again.  We don't want to risk her getting an infection that will run rampant in her still-compromised system (especially with so many un-vaccinated kids around these days.)  Hopefully these are the last first vaccinations she will need!

We're still wading through the dark and murky waters of social services.  We've had a few wins, but many things are still in progress.
  • Scarlett got a handicap placard for us to use when driving with her in the car.  We knew we could get one a while ago, but waited.  We didn't really need it and did not want to deal with anyone's commentary when they see us using it with a seemingly normal family.   I've seen many families like ours get nasty notes on their windshields by people who make assumptions based on what they see.  It's in the car if we need it - and the bigger she gets, the more we might.
  • We got approved for respite care.  This is a service provided through our county Regional Center.  Now that Scarlett is 3, she has been moved from the Early Intervention program to the long-term disability program.  She qualifies for respite hours now, since she has a qualifying diagnosis (cerebral palsy, on paper) and requires more care than a typical 3 year old.  We interview a care provider tomorrow, who will hopefully begin coming to give Chris a break some afternoons while I am at work.
  • We have been getting visits from a deaf family mentor.  She is a deaf woman, and she is just here to help, sign with us and chat.  It's great! Chris gets a lot of signing practice at Scarlett's school each day, but I don't get to practice nearly enough.  Since the only free time we have is dinner time, we cook, eat and sign together.
  • A speech therapy student, conveniently the niece of Scarlett's school director, has volunteered t come work with Scarlett to give herself some experience.  She plays with Scarlett for an hour, giving Chris another much-needed break and Scarlett yet another opportunity to work on some speech goals.
  • We're in the process of getting In Home Supportive Services (IHSS).  This is a payment to Chris as the primary caregiver.  It is another county-supported service, and is intended for people who would otherwise need to be in a medical facility to receive the level of care they require.  Other people might pay a nurse or caregiver, and we're lucky to be able to have Chris able to be this person.  He will be officially employed (by Scarlett!) and submit a time card for the services he provides that are outside the "normal" childcare range - including tube feeding, giving medications,  diapering, dressing, lifting/moving/positioning and basically caring for her. It will be a huge help in making our decision to have him home with her full time viable for as long as we need to.
Chris spends most of his time scheduling all the paperwork, phone calls, appointments and meetings.  It adds a higher level of mania to our lives, but we feel like every opportunity we can get for her is a benefit.  And hopefully, once things are set, we can stop dealing with it all for a while - it will just work.
On the other hand, her state medical insurance was cancelled.  This is incredibly frustrating.  We worked for months to circumvent this problem, and tried to have everything in place for continued coverage, but a letter was delayed, a doctor went on vacation, and now it's in a bureaucratic mess.  it took months, but we got the right letter with the right diagnosis that qualifies her for institutional deeming, or continued Medi-Cal, outside our income.  This all depends on the Regional Center, which must provide one billable service in order to approve her need for institutional deeming, hence the new respite hours. This seems crazy to me - we have to have something else on top of what we need just to check a box on the paperwork - but I'll take it if it makes everything work the way it is supposed to.

Now, until the paperwork goes through, she can't have new hearing aid ear molds, and we are holding our breath that she doesn't get really sick (we're headed into the longest stretch outside the hospital EVER, so chances are slim, to say the least).  Luckily, we still have private medical insurance which will cover the basics without too much damage, and a meeting tomorrow with the worker who is helping coordinate the transition.

The anniversaries of her diagnosis, surgeries, and start of all this chaos is coming over the next weeks.  It's a tense time for me, with so many memories and dredged up fears.  This may be the first time we haven't had a sick or recently-operated-upon child for Christmas, and I am looking forward to that!


Jen Isotalo said...

Go Scarlett! I love your updates. :)

Titus 2 Thandi said...

Yay for progress!

DiJe said...

I wish I had something to say to help ease the burden, but I cannot even begin to wrap my mind around the stress levels you guys operate with on a regular basis. You three are amazing. Wishing you a healthy, happy holiday season with no more red tape!

WJuzwiak said...

I love hearing your updates, especially the positive ones! I have been following your story from the beginning since my daughter is a 10/10 baby! You are all doing awesome and I am so happy to hear she is doing well! I hope you have a wonderful, stress free holiday!

child of God said...

Great progress! Praying for you Scarlett and hoping this will be a wonderful Christmas time for the whole family.


Abby said...

So glad that things are finally falling into place, with her weight gain, respite help, and best of all, continued health!

You are an amazing set of parents. Lucky Scarlett.

jb06792 said...

Here in RI we have Katie Beckett that gives medicaid for medical reasons not just financial. Does your state do that?