Somebody got their haircut… (she actually got them all cut…)

Share This

Last week Isabel & I got up early to make it up to the Kaiser Sunset hospital for an upper GI x-ray, also known as a swallowing test. The aim of the test was to ascertain how well Isa’s body works in the whole swallowing process from throat to intestines. Often for victims of a stroke, and for children with cerebral palsy, the whole eating & digestion process can be fraught with difficulties & challenges.

Anyway, the test consists of Isa needing to (more…)

Share This

Sorry for the delay. Isa has been a bit thrown off by the transition to a new babysitter over the last two weeks, plus it didn’t help that she has been teething… real bad. So don’t send Guido to break my legs.

Share This

Chuponing.

That’s our contribution to the spanglish language. A chupon is a pacifier, so chuponing is just sucking on the pacifier, as in “Isa was in my arms chuponing, beginning to drift off to sleep.”

Plus, chuponing is a lot easier on the tongue than pacifieriendo.

Share This

Just read this story. Obviously don’t know the specifics of her diagnosis, since cerebral palsy can vary greatly from patient to patient. But it is extremely encouraging to read about adults with cerebral palsy who are living long, integrated lives.

Share This

Since I know many of you are experiencing withdrawal symptoms from missing last weeks fix, I thought I’d be nice & get it up earlier this week. If you missed the photos from Isa’s “I’m officially in the family” ceremony, just follow that link.

Share This

Share This

(more…)

Share This

Share This

For all of you junkies who need a hit, here she is.

(more…)

Share This

This is for all of you Isabel junkies out there that can’t get enough of her.

(more…)

Share This

The past 3 weeks were more full than I had anticipated. And as has been true for much of the past several months, it mostly centered around my daughter’s health. Our X-mas holidays started with an EEG test to rule out the possibility/probability of Isa being a candidate for seizures. We haven’t gotten the official test results back yet, but (more…)

Share This

beauty. cuteness. Yes, you know who.

Share This

Water drops tiptoeing over head.

Eyes closed in her crib.

First rain, soothing.

Share This

That is, first birthday. Isabel burst into our lives on December 21st, 2005 - twenty four days after she was born - and on Tuesday (341 days later), she’ll turn 1! Below are some pics from a her first birthday celebration:

(more…)

Share This

Did a bunch of paperwork for Isabel today (I’m her personal assistant)

• Recieved a notice from nurse case manager about our application to the California Children’s Services.  Faxed her a copy of Isabel’s neurology report.

• Called Kaiser, our HMO, to get a copy of the “Explanation of Benefits” letter.  Should take 10-15 days, at which point I’ll fax it to the nurse case manager so that our CCS application will be compete.

• Faxed our adoption agency with some random information that they needed in order to complete our fost/adopt status renewal with the state.  Since we haven’t yet finalized Isabel’s adoption (read below), we had to renew our status since it had been a year since we’d originally been certified.

• Completed various documents - Memorandum for Setting Hearing, Adopt 320-Adoption Expenses, Adopt 215-Adoption Order, and Adopt 210-Adoption Agreement — to be submitted to the Edelman Children’s Court just around the corner in Monterey Park.  We had original started the filing to finalize Isabel’s adoption back in June, but had to hold things up for several other filings when we found out about her brain injury.  It bumped our adoption into a whole ‘nother sphere.  On many levels.

• Spoke with Maxim Healthcare Services about mi cunada (sister-in-law) Ana’s application to be a qualified care-giver for the 8 hours a month of respite care we qualify for with the Regional Center.  We are still waiting on a CPR card in order for it all to get processed.  Then Ana can get paid for the time she already loves to spend with Isa.

• Still waiting to hear back from the Adoption Assistance Program.  We needed their assessment before we can file for finalization with the court - had hoped their part would be done by now, since we submitted everything back in August.  The fact that we could get a pretty penny in assistance from them is keeping me from really being frustrated.

I’ll keep you updated when the bottleneck of paperwork gets unstuck.

Share This

A pretty accurate, fun & “don’t-take-it-too-seriously” list of things to be grateful for with special needs children. #1 made me laugh and #5 is just true. I’ve heard #7 isn’t always so true, and while I think that #8 is ironclad for anyone with kids, its more true for special needs children.  Not that I’ve ever misused that one.  Plus, I confess, #3 has crossed my mind.  Several times.

1) You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.

2) Developmental delays = more years of hugs, kisses, and little-kid sweetness.
My 13-year-old still wants to sit in my lap, give me hugs, and tell me he loves me. What mom of a sullen teen doesn’t secretly wish for the same?

3) Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.

4) Any little milestone is a cause to throw a party.
Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.

5) Every day is a learning experience.
Some days it’s a pop quiz, some days it’s a crash course, but life with your child is always an education, for sure.

6) You have the privilege of putting several doctors’ children through college.
After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child’s name on some letterhead and take pride.

7) You meet a better class of parent in waiting rooms and support groups.
Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.

You have an iron-clad escape excuse for any occasion.
You’d love to stay at that boring party, crowded event, endless church service, but, you know, your child just can’t tolerate it. (And if sometimes it’s you who can’t tolerate it — who’s to know?)

9) Coming up with new strategies every day keeps your brain sharp.
They say doing crossword puzzles helps ward off Alzheimer’s. Figuring out your child’s schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.

10) Your blessings will always be fully counted.
Other parents may take the gifts that their children bring for granted. Not you. Not ever.

Share This

A few weeks ago I got a phone call from a friend while I was at a coffee shop. They asked me what I was doing. I answered, “I’m hanging out with my friend Job.”

“Oh, then I’ll let you go,” they replied, not catching my humorous reference to my study in the book of Job for the past few months.

Now I must say, Job is not the kind of friend you grow up dreaming about. I know only 1 reason why someone makes friends w/ Job. We make friends with Job when we are suffering – whether individually or with others – through some experience of pain, loss, crisis or calamity.

For me, my friendship with Job began an introduction made through (more…)

Share This

…before becoming the parent of a child with special needs. But this is the kind of stuff I’ll be paying lots of attention to now.

The 6th annual week of celebration of and advocacy for inclusion in U.S. schools is scheduled for December 4-8, and materials are available now on the National Inclusive Schools Week site to help you mark the week in your area. Among the resources are a Celebration Kit, applications for a national Poster/Essay Contest with prizes donated by Scholastic, sample letters to the editor to customize and send to your local paper, and suggestions for making a donation of money or items needed.

Share This

No. Not Bigfoot.

No. Not the Chupacabra.

Not the Lockness monster (though have you seen that funny commercial)

I’m talking about this picture of Isabel’s pucherito: (more…)

Share This