2 weeks away and a car full of luggage...

Today we leave for a week long stay at my parents in Kentucky. I was up late last night packing everything but the kitchen sink. Feeding pump, a case of formula, nebulizer, feeding bags, meds, diapers, extension tubes, an extra mickey tube (Jackson's button), syringes of all sizes, extra blankies and a few toys for the car ride - and all of that is just for Jack. The rest of us have become remarkably easy to pack for.

Jackson has an Occupational Therapy appointment this afternoon, after which we'll load up the car and hit the road. Seven to eight hours later we'll unload and unpack. Thursday we come home for a two day stay just to turn around on Saturday and do the whole thing over again, this time on a plane to Colorado.

All the arrangements have been made that can be made. For our journey to Colorado we have printed up directions from the airport to the resort, the resort to the hospital, and the airport to the hospital. With any luck we'll only need the route to the resort. Jackson is still pox free as of this moment and let's hope he stays that way.

During our two day reprieve between trips, Jason will be working both days and Jackson will see the developmental pediatrician at Kennedy Krieger. I don't even know what to expect at this visit. I know there will be some developmental testing, but other than that I suspect it will be the usual round of questions and answers, followed by another diagnosis of "lets-wait-and-see". If time allows, I'll update the blog after the visit.

Here's to vacation! Happy summer everyone.

Houston We Have a Problem, Part II

Thursday evening, after dinner was finished and the dishes were cleared, Ainsley turned to me and said,  "Mommy, these bumps on my face itch".   Um what?  I pull her into the light and take a good look at the bumps on her face.  Hmmmm. Definitely suspicious.  Oh no.  It couldn't be chicken pox, could it?

The next morning, a few more spots have arrived.  A message left at the Pediatrician's office and a phone call back from one of the other doctors in the practice produces the following 

conversation.

"What's wrong with her?" she asks.

"I suspect, she has the chicken pox." I answer grimly.

"Oh.  Well, it will likely take 5-7 days for them to fully present.  Just try to keep her from scratching them.  Otherwise she'll be fine.  The only people who are really susceptible to the chicken pox are those who have been on high doses of steroids."  she informs me.

"You mean like her brother?"  I ask, as my heart literally skipped a beat.

"Oh, you mean her brother has been on steroids?"  she inquired.

"Yes, Jackson has been on steroids all week"  I say.

"Is this Mrs. Bender?" she replies.

"Yes."

"Oh no."  she says with a sigh.  Then she goes on to say, "You need to watch Jackson very carefully.  If you see one spot, you have to call us immediately.  He'll need to go to Hopkins for a Gamma Gobulin injection."

I am in complete disbelief.  It is just the chicken pox.  What in the world could he need an injection for?  

A short time later our own Pediatrician calls and confirms what her colleague said earlier.  He will need an injection if he shows any symptoms.  With the fear that Jackson's reaction will be worst case scenario, the injection will fight the virus for him, sparing his body the fight.  However, she also informs me that the incubation period for chicken pox is typically 10-21 days.  My mind reels as my calendar pops up in my head.  

Oh no.  So just about the time we are to be on vacation in either Kentucky or Colorado, Jackson will likely be in the midst of a chicken pox outbreak.  I ask Dr. M if this is a problem. Her response was a quick and deadly yes. 

So now I have made multiple calls to the various children's hospitals in Colorado and my Mother to her doctor friends in Kentucky.  The only one in Colorado that carries Gamma Gobulin injections is in Denver.  Calls abound.  Requests for letters and copies of records to travel with to ease the ER visit, if necessary.  

With any luck, he won't get it.  But the odds aren't in our favor.  So with any luck, we'll catch it early, get the injection, and move on.

Keep your fingers crossed.  I know I am.

Houston We Have a Problem, Part I

There have been so many events to blog about this past week, that not only am I behind in my blogging duties, but I hardly know where to begin.

About a week ago Jackson started with a runny nose and a cough.  By Tuesday of this past week, his breathing was labored and we paid a visit to our pediatrician.  So with nebulizer treatments every four hours and hefty doses of Prednisone, we weathered the storm and avoided the hospital.

During our visit to the Pediatrician's office the staff dropped a bomb on us.  As of August 1st their office will no longer accept our health insurance.  I was completed stunned.  As I waited in the exam room my head was spinning.  What were we going to do?  Michele came in the room with her usually bright smile.  The instant she started talking my eyes welled up with tears.  I told her what the staff had relayed to me and her face went blank.  She wasn't aware we were on the "list".  After a few minutes she said she was going to make it right.  Whatever that would be she didn't know, but she would make it right.  I went home to hold my breath.

Later that afternoon, she called me at home.  She made it right.  There would be some billing issues to work out with the office manager but at the days end, she and I were both relieved to know that she would continue to be Jackson's Pediatrician.

That was the beginning of the week......

Bundle Up Folks, There's an Artic Chill in the Air or I am a Demi-God

For months now, I have been working to get some kind of clarification from the insurance company and the Kennedy Krieger Institute regarding Jackson's upcoming appointment. He is scheduled to see the world reknowned Developmental Pediatrician, Dr. Paul Lipkin. This appointment was made in NOVEMBER. Yes, nine long months we've been waiting. During the period we were on the waiting list, I was advised by KKI that they do not have a contract with our insurance company, United Healthcare, and that we would be responsible for the entire bill. WHOA.

How much are we talking here? Well, that's the problem now isn't it? Does anyone ever know how much a visit will be or the cost of additional testing? Nope. The best they could do was guesstimate.

"Around $800 for the first visit", I was told. HMMMPHM. Better get on this.

So I called our friends at UHC. Their story was that Dr. Lipkin was indeed an approved in network physician. As long as the visit was billed through the provider (Dr. Lipkin) not the facility (KKI) it would be covered. So all I had to do was make sure it was billed that way. Right.


So then I called KKI.
"How does Dr. Lipkin bill?" I ask.
"All of Dr. Lipkin's billing goes through KKI." she responds.
"He can't bill it out to UHC himself?" I ask.
"No." she responds.

Oh boy. Another phone call to UHC.

"So if Dr. Lipkin is in network, and only practices at one location, why isn't that location also in network?" I inquire.
"The location does not have a contract with UHC." she responds.
"Then what's the point of the physician having a contract with UHC?" I retort.
"This physician has been contracted with UHC for quite some time," she informs me. "He may have changed locations after the contract was initiated."
"Great. So there's nothing I can do?" I ask.
"Well, the name on the bill doesn't matter so much as the tax ID number. As long as the doctor is on the tax ID number used for the billing, it will be covered in network."

WHOA.

Several emails later I have the tax ID numbers. I call UHC to compare notes.
"Nope, he's not listed under any of these tax ID numbers, so we won't cover it" I am told.

Another email to KKI to find out if there are any additional tax ID numbers produces this reponse..... "We are calling UHC and will inform you of the outcome."


Wait a minute. UHC and KKI are actually going to talk to each other?!?! WHOA. BIG WHOA.

Twentyfour hours later I get a phone call:
"Hello, Mrs. Bender?"
"Yes."
"This is Latanya with KKI calling. I just wanted to let you know that we've worked out an arrangement with UHC and we'll be billing them directly for your visit. There will be no payment neccessary at the time of service."

I swear my ears are deceiving me.

"Really?!?!" I respond.
"Yes" she says. "In fact we've spent all morning in meetings and conference calls getting the agreement set up."

"THANK YOU!" I'm practically screaming in the phone.

"No, we thank you Mrs. Bender. This is just the push we needed to initiate this contract and get the procedures in place for billing UHC."

Now I am sure my ears have deceived me. Playing in my head is the Rocky theme song and I'm mentally dancing around the room.

Yep, I am pretty sure now I am a Demi-God. Sent to earth to make the insurance company and medical facility actually work together to resolve a problem. And if you listen carefully, you can actually hear the sound of the eighth circle of hell freezing over.

Lighting it up

Tonight I sat on the front porch with Jason watching Ainsley hunt and catch lightning bugs. It brought back a lot of fun memories of summer evenings spent chasing lightning bugs around my parents back yard. In the early evening the back yard took on the look of Christmas, the trees literally sparkling with hundreds of lightning bugs. I always revelled at how beautiful it was to see, and disappointed to see how quickly it would pass.

Tonight I watched Ainsley daintily dance around the yard, chasing after every bug she saw. In her Cinderella nightgown and pink sparkle shoes, it was even more beautiful than the scene I remember as a kid. And again I was disappointed to see it pass so quickly, but this time for very different reasons.

Good things happen to those who wait.....

For weeks now, many if not most, of the postings on this site have been not so full of sunshine and happy thoughts. For those of you following along, thanks for hanging in there. It has been a long long journey. I've recognized over the last few weeks that Jackson has made great strides (literally!) and I wanted to be sure to share those happy thoughts with you as well.

He is walking. Really walking. He is still very wobbly, but he is walking nonetheless. I don't know when we turned the corner but he is definately spending more time walking than crawling. He is really enjoying time spent outside walking, pushing his little car, and swinging in his swing next to his big sister.

As I've said before dinnertime has become a bit of a struggle. Luckily we've discovered that part of the struggle occurs because he wants to feed himself. This is huge. While the amount of food he is getting isn't a great deal he takes his little spoon and does his best to feed himself. The end is always a mess but it is worth the hassle of the cleanup.

Ba. Jack is still just saying ba. No ma or da. Just ba. But his babbling has increased in frequency so we're hopeful that sometime soon he'll discover one of the other 21 consanants. He is also signing more and more. Picking up signs left and right. Eat, more, all done, and bath are some of the regulars, add in a high five and blowing kisses and you can almost have a nonverbal conversation with him.

So that's it in a very large nutshell. Good things are happening. Finally.

Feed ME!

Poor Jack. He wants to eat and drink so very badly. Dinnertime is becoming a bit of a drama. But thankfully we've discovered that he really wants to feed himself. So I put small amount of baby food in a bowl and he goes to town. Last night he fed himself the entire 4 1/2 ounces with little spillage. Now granted it wasn't the cleanest event but it kept him happy for the 30 minutes or so that made up dinner time.

So on to feeding.....well, maybe not so fast. I called the swallow specialist to get an appointment and her next available is Sept 12. Yeah. Right. So I explained to Liola the scheduling assistant the situation and she put us on the waiting list for the next cancellation. And while that is helpful, people are generally less prone to cancel an appointment that they've waiting 4+ months for. But we'll keep our fingers crossed.....

Cleared For Take Off....

More or less. So the visit to pulmonary went well. With not much more information than we previously had and after a string of questions and answers the docs put their heads together and came up with this: Let him eat cake! All right, maybe cake is a bit of a stretch but you get the basic idea. ('Let him eat mashed peas' just didn't have the same effect.)

So we're to schedule an appointment with the swallow specialist so she can come up with a game plan for this eating thing. Who knew you needed a game plan to eat? Well apparently if we go too fast he will aspirate, if we feed him the wrong things he will aspirate, if we let him drink thin liquids he will aspirate. So there is actually a bit of a science to the whole thing. Not to mention someone actually has to teach him to drink. Really. After 15 months of no liquids Jackson has no idea what to do with a straw (which is how they teach him to drink). So we;re off to the drawing board to comeup with a plan of attack.

With any luck he'll be off of tube feeding by the fall. Yipee!