Monday, August 24, 2009

A weekend trip to the ER

Well, Braden has been getting usual August "junkiness" that he gets this time of year. WHile we tried to get into the pulmonologist for 2 days wtih no avail, we went to the pediatrician who helped us decide we'd better go to the ER so we can get a chest x-ray, cbc, blood gas, and cultures started, since going through the weekend would have meant we'd probably end up there anyways.

So we started him on some antibiotics. Chest xray was inconclusive, but slight elevations in his heart rate, temperature and other tests gave the doc enough to go on and call it bronchitis/pre-pneumonia stage. Today we are still waiting for doctor directons, as we know his cultures were growing things, but we might not be on the right meds, according to the pediatrician.

To make things worse Friday, when the home nurse came, for the third month in a row she had much difficulty accessing Braden's port, even after sticking him 3 times. She said she thought it might be clogged - but my gut was telling me she's not comfortable enough with his port to really determine that. My instincts proved true when the hospital oncology nurses accessed it on their first try (PRAISE GOD - THANK YOU!!).

So we are spending lots of time doing extra treatments and he seems to have perked up a little, but we are watching him close. The doctors orders may change and require a new direction, but for now we are treating him at home.

Keep praying, and thanks for the ones you've also sent up on his behalf. Please say extra prayers for AUNT SHALA who goes in for kidney surgery WEDNESDAY for a stint to make it work again.

Thanks for the continued love, prayers, and support - we thank you and love you all for it!!


Saturday, August 15, 2009

New School Year, New Problems

So while working at LSU has its advantages, it also has its pitfalls. Brad and I were certain to see furloughs, however as we stand on the pendulum platform that is the Louisiana Legislature, for now has swung back over to prevent staff furloughs, for now.

In Braden's world... things are also just as shaky. His health is pretty good, but of course we are experiencing the usual August yuckiness that comes with the stickiness of the heavy air and oppressive humidity. The shakiness is at the same mercy our jobs are, to the "great" state of Louisiana. But we are still blessed, and finally have pics to share of Braden in his new bath chair that therapist Gayla snagged for us - THANK YOU MISS GAYLA!!

A terrible tragedy occurred here this summer, when a local daycare left a child in a van on a hot day, and the child did not live. While this daycare had been cited many times before for various violations, the state is now trying to avoid liabilities... and has therefore created a state-wide "crackdown" on all licensed daycares. While we are in full support of efforts to ensure child safety, we are quickly learning that some of the policies that were once enforced, are now once again coming into the picture, and some of them do not make any sense at all.

Kidz Korner, where Braden goes, as most of you know has been one of about 40 daycares we contacted in Baton Rouge that did NOT break the laws by ourightly refusing to serve a special needs family. While there is no state agency out there enforcing daycares to uphold federal disability rights law, they certainly have policies in place to make things incredibly difficult for the few out there who do the right thing.

So now we are a family in action to once again stand up for the rights of parents everywhere, not just special needs families. The DSS office in LA is attempting to dictate exactly HOW we choose to administer medicine to Braden. CAN YOU BELIEVE THIS?? Now I'm no lawyer, but I do have common sense - does this seem right to you? How can ANYONE other than his parents determine how my child is medically treated? Even his doctors can only offer recommendations, and it's our choice as parents how to treat our child. So now we've rattled the cages at Dept of Social Services who is over licensing of daycares, plan on getting the Dept of Health & Hospitals involved, and have put in calls to advocacy groups and family law/rights attorneys.

DSS is saying that we must bring Braden's entire medicine cabinet to daycare every day, so that she can administer his medication. Since Braden was born, we as a family decided that only one person a day would ever administer medication, for Braden's protection to ensure his safety. This way it could help prevent any accidental overdosing or underdosing. Not fool-proof, but less chance of accidental medication issues.

And when you look at the photos I've attached, note that this is Braden's medication for ONE DAY, and does not include his nebulized medications with his vest therapy in the mornings and evenings. Can you imagine the ADDITIONAL liability LaTacia would face if she were to administer these daily? The state says that there policy is to "protect" her.

But let me give you a real-life scenario about why this scares me to my core: if Braden had ADD or ADHD, it would be OUR CHOICE as his parents to medicate, or not to medicate. A friend of mine has two children, one with ADD and another with ADHD. When in the care of another, these children each had their own medication to take, and the caregiver accidentally gave the wrong one to one of the kids! Now this incident did not have detrimental life-threatening results... but in a case of an epileptic, medication mix-ups can have detrimental results! Now the state wants to tell me that my childcare provider needs to administer Braden's 11+ medications and try not to get the dosage and times mixed up when she's running a daycare?

So we will keep you posted on the outcome of our newest fight with the state of Louisiana, and the existence of policies and procedures that were designed by folks with NO medical background, NO special needs experience, and NO understanding of the additional stress and strain they are going to put on families who are barely hanging on as it is. I fear that until we have more lawmakers living with special needs children, our nation will continue to ignore the hell their laws put these families through just trying to survive and get by.

For now, just pray that we will be able to break through the walls of ignorance, misunderstanding, uneducation of reality, and unreasonable policies that exist... and pray for our strength to mount a fight that just might parallel David vs Goliath. We thank you for your continued support and prayers!!

The Wilson family,
Brad, Kodi & Braden

Sunday, August 02, 2009

Getting in the last of summer

Well mommy left the boys for another work trip - this time to NYC. She got a little personal time too: saw "Chicago" on Broadway, had dinner with current and former students, and took in a few more sites of the city. Daddy and Braden got some good quality time just hanging out.

We are getting all our therapy evals taken care of right now, so that Braden will be set up for school... and private therapy will come see him right at the daycare!! So we are excited to get all of that set up. We also recently took bloodwork to check his epileptic medicine levels, as Braden is experiencing more than normal grand mal seizures, and it really upsets him afterwards... because he has grown so much, we have added an additional dose of that medication. It will probably take a few weeks to see any change in his seizure activity.

Braden got a pair of shoes for school, since we don't get to buy him a uniform:-) So he got his first pair of light-up Skechers that light up like police lights, and mommy got him an official NYPD t-shirt to go with them! Daddy, as most of you can guess, got his own NYPD baseball cap. We will share another update soon... these pictures are of Braden in his brand new comfy bean-bag chair... and one of him with his new froggie friend from the Shedd Aquarium.

Any extra prayers you can spare right now, we will appreciate them. We think that a few good and decent people in the State of LA have taken and interest in Braden's case, and if all things go well, he might FINALLY get some state assistance... so please, please, please send up those prayers - we really need the help!!

Love to all - the Wilson family