My apologies.....

For many many things. I have severely neglected our poor poor blog and have received many comments regarding the lack of update. So I am sorry, truly sorry to have kept everyone in the dark for so long.

Several weeks ago we had a follow up appointment with Dr. Lipkin (Developmental Pediatrician) at the Kennedy Krieger Institute. And while he was pleasant enough, he didn't have many pleasant things to say. In a nutshell (take three hours and compress it into a few sentences): Jack has made some progress with his gross motor skills, he has made little progress with his fine motor skills, and absolutely no progress with his language skills. We originally saw Dr. Lipkin in July, at which point he gauged Jack's language skills at nine months. Apparently that is exactly where he remains today. It was a terrible disappointment. I can't even begin to tell you how I didn't want to believe what he was saying, but I knew he was right. The paperwork which documented the appointment had a diagnosis of Speech Apraxia written on it. We discussed it prior to leaving so my brain could start to process what the next steps would need to be, Dr. Lipkin strongly suggested increasing his speech therapy to twice a week. Whew. That's a lot for a little man with so much going on already.

Unfortunately, that is not where this entry ends. Shortly after the appointment I contacted Infants and Toddlers to inform them of the latest diagnosis, and to request a meeting so we could discuss a new strategy for progressing Jackson's speech. A few weeks later (hey we are talking State schedules here...) we met. The Service Coordinator (who is also the Occupational Therapist), Cognitive Therapist, Jack's regular Speech Therapist and a new Speech Therapist were all there to discuss new strategies, or so I thought. After about twenty minutes of talking about the visit to Kennedy Krieger, the new Speech Therapist piped in. She proceeded to tell me that Dr. Lipkin had no business diagnosing Jack with Speech Apraxia, and that only a trained Speech and Language Pathologist could make that diagnosis. She THEN went on to actually READ to me. Yes folks, lets gather 'round for a nice story. She read passages VERBATIM from the Asha.org website. She didn't bother to get Jack's history, didn't bother to ask the other therapists their opinion, and certainly didn't give me a chance to express my concerns. Unbelievable. Your (or at least my) tax dollars at work. Brilliant. She then went on to say that the Neuro-Linguist we consult with is just more or less a glorified Speech and Language Pathologist, who is just pushing her own services. There's one word that came to mind at the time, which I will spare you from publishing on this site, but you get the idea.

Mortified. Livid. Enraged. I, a somewhat well educated parent who takes it upon herself to seek out additional help and resources for my child am being brow beaten by a State employee. I don't think so. Fortunately for her, my proper southern upbringing would not allow me to tell her exactly what I was thinking. No I complained the proper way - several days later to her supervisor.

In the mean while, it seems Jack's Nissen has loosened. Last week he picked up a lovely bug of diarrhea and vomiting, the latter of which he shouldn't be able to do at all. Well, it was quite the surprise to wake up at 3am to the sound of Jack aspirating his own vomit. (Sorry to be so graphic but there really isn't any other way to put it.) And now he is sick. Respiratory infection. Whether or not it is a result of the GI bug remains to be seen, however this does increase the urgency for scheduling the next swallow study. We, all the therapist and most of the docs are certain he is still aspirating.

On a much more pleasant note, he is quite the little man. His personality seems to have made an appearance overnight and he is taking after his father in being the little instigator. Oh well. As long as he is not pulling his sister's hair, I am happy.

Count your blessings...

During the last couple of weeks several thing have happened. Jack has seen the Pulmonary doctor and undergone an EMG. Both of which were fairly uneventful. The results from the EMG were normal, which is great news. He has been sick for three weeks, and is now on his second round of antibiotics and a round of steroids and seems to be doing better. Nebs and meds and repeat. A pretty simple formula for keeping him out of the dreaded hospital. It seems this flu and virus season may be a bit more difficult than the last, but we're hopeful we can handle it with home care.

It is amazing how your perspective can be so different than someone else. We are fortunate, so fortunate, that Jack is a happy, rambunctious boy who loves to pull his sister's hair and screech at the top of his lungs. No words yet, but I'm sure they're coming.

A few weeks ago we learned of an old acquaintance whose three year old daughter was just diagnosed with stage IV cancer. A friend of a friend who we haven't seen or spoken to in years. I've been reading their blog (daily) and keeping up with the roller coaster ride that has suddenly become their life and I am amazed at the strength her parents display. In one particular blog, Amy (the Mom) talks about how she swapped stories with another patient's mother and how sad she felt for her. Wow.

After reading her blogs, I am always tearfully thankful for my children. Through all the struggles it is sometimes difficult to remember that it could always be worse. During our stays at Hotel Hopkins, I recall seeing other really sick children, not that Jack wasn't sick, but in my opinion he was never really that sick, and thinking how lucky we were that he wasn't as sick as they were. Jack has some mechanical / neurological problems which make his life more challenging. But we are fortunate, so very very fortunate that these problems don't threaten his life.

Happy thoughts and prayers for Arden. Perspective is a really powerful thing.

Bruiser

Jason was off today, so he was tasked with dropping off and picking up children from schools. When he arrived at Riderwood to retrieve Ainsley, he was surprised to run into her teacher Mrs. Buchman. Mrs. Buchman was surprised as well to see him but glad for the encounter. Apparently she needed to speak to us about Ainsley's behavior today.

Apparently while waiting in line for the water fountain, Ainsley became impatient with the boy in front of her, who was at the time drinking from the fountain. In her frustration she hauled off and punched him in the back. Yes, folks, that's right, PUNCHED him. Read it again because it is impossible to believe. But yet it is true. Little petite dainty Princess Ainsley punched a boy!

On the walk home, Jason grilled her. I wasn't present for the actual questioning, but I can only imagine there was no less than 100 questions fired at her. It was when I pulled in the driveway that it seemed to start sinking in for her. I got out of the car and she quietly approached me. I could tell by the look in her eyes something was askew, I asked her what was wrong, and she welled up and started bawling. So much so I couldn't understand what the heck she was saying. After getting her to calm down a bit the story finally came out. Jason helped fill in the gaps of her story while she interjected the best defense she could come up with. After all the pieces were put together the whole story includes the following details (the truth of which I cannot vouch for!).

She was thirstier than Graham (the victim) and he was taking too long. It was his fault.

When she was sent to the office after the incident, she was apparently crying so hard that the office staff couldn't figure out why she was there and proceeded to give her a stuffed animal and send her back to her classroom. Ainsley now thinks that going to the office yields toys and prizes!

During art class, Ainsley was rewarded with a "coupon" for her good behavior.

After all the facts came to light, we sent her to her room so that we could discuss an appropriate punishment. What we came up with is the following: She had to call all the grandparents and tell them what happened. She also lost her television privileges for two weeks. And she has to write an apology to Graham and give up her coupon to him on Monday. That last one really hit home and produced even more tears.....

Little Miss Bruiser now. Watch out boys, here she comes.

The Mother of All Updates...

I know I've been really bad about my blogging lately so here's the Mother of all updates.

Dr. Zee the Optho Neurologist saw Jackson a few weeks ago. It seems his Ocular Motor Apraxia is slightly improved (Dr. Zee rated it a 15% improvement). And with more time it should improve even more, although it is uncertain if it will ever go away entirely.

Dr. Collins, the Opthamologist, said Jackson is farsighted, although that is fairly common in children and is still within the normal range for his age group. So no glasses, yet. She'll see him back in six months.

Dr. Cohn, the Genetic Neurologist, has ordered more testing for Jack. He is to have an xray of his spine to check for Scoliosis. We will be drawing blood to repeat his acylcarnitine profile, since his liver enzymes were high when last tested. And last, but not least, Jack will undergo an EMG (Electromyography) to test muscle and nerve function. It's not a pleasant procedure, it involves needles and electric current and NO anesthesia. But it will yield some valuable information about Jack's nerve conduction and muscle function. Hopefully it will be worth the unpleasantness.

All of us, with the exception of Jason, have had our Flu vaccines already. Armed and prepared for the winter months which will, with any luck, turn out to be very uneventful.

The Sub Sub Specialist

Today we had a follow up appointment with a sub sub specialist, Dr. Lefton-Grief, Jackson's Pulmonary Swallow Specialist. While we expected a fairly warm and fuzzy visit, it wasn't quite as joyful as we had hoped. Dr. Lefton-Grief suspects that Jackson is still having issues with liquids, more specifically she thinks he is still aspirating liquids. After spending about an hour with the good doctor, it seems Jackson will be keeping his g-tube through the upcoming winter season. That was a little disappointing, she was however pleased with his progress and encouraged us to keep trying. We will be taking him in for another modified barium swallow study once we can get him to drink something other than water but yet not a dairy product. (Anyone have any ideas?)

Friday, Jackson is scheduled to see another sub sub specialist, Dr. Zee, an Optho Neurologist. I would venture to guess that none of you had ever heard of an Optho Neurologist before. I know I hadn't.

I am officially a yuppie in suburbia....

I went out with the girls tonight, for the first time in a very very very long time. I came home just in time to say good night to Jason and have some quiet alone time to myself. As I was flipping through the channels I came across the HD version of "She's Having a Baby", specifically the choreographed lawnmower scene. Upon viewing it for a few moments it came upon me that this is my life. So much of this movie is real it completely freaked me out. And had I not recently consumed three Jager Bombs, I would have been considerably more freaked out.
But looking at it for what it is I realized that everyone has there own little dramas. Everyday, there is something somewhere that affects someone. Big or small , today or tomorrow it happens. The reality of it is how you deal with it. Watching Kevin Bacon scurry around panicked with the idea of the impending doom of child rearing that lurks in the darkest corners of his life, it occurred to me that everyone deals with chaos and drama differently.
But what is even odder, is that this is not the first time I've seen this movie. In fact it is like the 50th time I've seen it. But through the years my perspective has changed, and I suppose it will continue to change. Shaped by the events and elements that make up your life, slowly but surely we all figure it out. And I am suddenly amazed and awed at the number of things that I have managed to figure out, and even more shocked by the number of things I have yet to figure out.....

It's been a big week....

For once let me blog about Ainsley.  Goodness knows she doesn't get quite the print that Jackson does, but it has been a big week (or two) for her for which she deserves the attention.

Two weeks ago (or so) she mastered the art of riding her bike without the training wheels.  Last week she learned (and yet again mastered) tying her shoes.  This week it was starting Kindergarten and then yesterday she lost her first tooth.  All momentous occasions, with much rejoicing and accolades following them.  I can't believe how much she has grown up in the last month.  I jokingly said to her that she is no longer allowed to eat vegetables or take her vitamins.  On some level I'd like nothing more than to lock her up in the tower and throw away the key.  Anyone know a good convent I can ship her off to? 

Don't blog angry....

Earlier, I put up a post that wasn't very flattering to certain people close to me.  While I admit it isn't pretty to air your dirty laundry, sometimes it is just what has to be done.  And now I feel better and have taken down the post in question.  The person in question none the wiser.

In the meanwhile, I'd like to say my social calendar is booked but as it turns out it is just my day to day grind.  Jackson has somewhere between 10 - 14 doctor's appointments in the next six weeks.  So stay tuned dear reader for the many updates yet to come in the very near future......

Junky Jack

He is still sick. Really junky junky lungs. We started Prednisone on Tuesday, which doesn't seem to have helped much. Low grade fever and a runny nose to boot. Mucky mucky mess. Keep your fingers crossed that we avoid the dreaded hospital.

A Summer Cold...

This past Friday, Jackson started with a runny nose.  By Sunday afternoon, there was a full fledge hacking cough and a bit of a wheeze.  Since then his respiratory status has gone downhill.  So a few days ago we dragged out the nebulizer and have been steadily increasing nebs in hopes of avoid another round of steroids.  We'll be visiting Dr. M sometime today to get our just-in-case-prescription of Prednisone.  With any luck we won't need it.

If I only paid attention in Molecular Biology....

Oh wait, I didn't take molecular biology. Well that would explain why I am at a loss looking at Jackson's lab results. Earlier this week it occurred to me that it might be helpful to have a copy of his testing. Helpful if I was a molecular biologist.

Don't get me wrong, I can interpret the report fine, it is interpreting the interpretation I am having trouble with. Our dear Pediatrician warned me "don't freak out" and "don't over analyze them" when she gave them to me. She knew well enough that as soon as I got the chance I'd be all over the internet trying to put the pieces together. (I can't help it.)

And that's precisely what I did. After scouring the internet for information regarding any results reported at abnormal levels, I am even more confused than I was before. But what was I supposed to do? Just wait? No way. It is not in my nature to just sit back and wait for someone else to solve my problem. Not happening. Especially when the doctors all told me all results were normal. That's the part that really makes me flip out. No one, not one of the doctors, mentioned anything about any results being reported as abnormal. Now, I can understand not thinking it necessary to go over every little result reported, but it might be wise to disclose those results which are questionable. I don't think any of the doctors were negligent in this case, however why not disclose abnormal results? It doesn't mean there is a diagnosis, it just means there is something else to watch for. Maybe repeat the testing in 3 - 6 months. I don't know. But I don't know because no one has informed me. And that's the part that makes me want to scream.

On another battlefront, our therapists from the Infants and Toddlers program have disagreed with Dr. Lipkin's recommendation for weekly physical and speech therapy. Not to discount any one's input, but now what? During my conversation with our Pediatrician Dr. M, I spoke of this and she was adamant that he receives the weekly therapy as suggested. Physical challenges and learning disabilities abound, the severity of both yet to be determined. Both Dr. M and Dr. Lipkin have made it clear that Jackson will struggle with these difficulties throughout his life. A revelation that has suddenly become difficult for me to bear.

A long visit with Kennedy Krieger

So it seems that the long wait we encountered for Jackson's appointment at Kennedy Krieger was just a preview of the long visit we were to have. Friday, July 6th we saw Dr. Lipkin, a Developmental Pediatrician at the Kennedy Krieger Institute. Five long hours of questions and answers and loads of developmental testing ensued. After quietly deliberating with several colleagues, the diagnosis was Hypotonia and a Speech and Language Impairment. Yes, five hours later and two somewhat insignificant conclusions.

The difference is now there are official diagnosis, albeit vague and still inconclusive. There is still a great deal of questions as to whether or not there is a bigger issues, most suspect there is, and what exactly that bigger issue is exactly. (The thought is a Neuro-Musclar disorder?) In the meanwhile, Dr. Lipkin has called for more intensive Physical Therapy as well as Speech and Language Therapy. Once a week each. Preferably at KKI. Hmmm. That makes for a few more trips downtown.

Sorry to be so brief, but we are on vacation in Colorado and that's really what I want do. Be on vacation. Lots to be dealt with when we return, but until then, it can wait.

To read more about Hypotonia visit: http://www.ninds.nih.gov/disorders/hypotonia/hypotonia.htm

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!

Little Appointment Big Expectations

I know it is bad to go into something with lofty expectations, but in this instance I just can't help myself. Jackson has a Pulmonary appointment this afternoon which I expect to either go very well and they tell us he can start eating (!) or it will go very poorly in which case they say they want to do another bronchoscopy. Either way is big. Big good and big bad, but even big bad would be better than leaving with a prescription for another healthy dose of "Let's-wait-and-see".

Think happy thoughts and channel all your good karma our way.

WARNING: This is a Rant.

I warn those of you reading this particular posting. This is a rant. A short, brief rant which won't apply to 99.9% of the people I know. But there's always that .1% who have to go ahead and piss me off.

Yesterday was a bad day. A very bad day. On top of the daily grind that makes up so much of everyone's days including taking Jack back to Hopkins to give nine vials of blood for yet more testing, yesterday I had the pleasure of dealing with my co-workers. I should make it clear that most of my co-workers are perfectly amiable, understanding and empathetic people. Thankfully this includes my boss.

A few of my co-workers however, are not so understanding, and are apparently a bit envious of my situation. How is that possible? Why in the world would anyone be envious that I have a chronically ill child who requires a great deal of medical attention? That I am forced to work from home many evenings and weekends because I never know when I am going to need the extra time? Or could it be that I have now aquired quite the vocabulary of medical lingo? Maybe my stunning good looks and charming wit? Who knows when there is so much to choose from?

We all know people like this, and most of us probably have to deal with them on a daily basis. I can cope most days. But then there are days, when by virtue of the rumor mill or a particularly conciensious co-worker, I hear that things are said about me, my work, my children, my "situaiton" to other people in and out of my department. Statements which may or may not be true, but are absolutely none of anyone else's business. I have been told that statements like "It's her fault Jackson has all those health issues because ....." have been made to multiple people. No really. Someone has been so bold as to say that. Again most days I can cope but yesterday it really set me off. Not that I can do much about it. I could choose to stoop to that level and engage in some sort of tirade but I know that won't help nor will it change the behavior in question. So I choose to ignore the source, post my rant and move on.


So there it is. Rant.

Status Quo

There was a time, not so long ago, that maintaining a certain level of healthiness would have made me happy. But now, as we emerge from the flu and virus season victorious, I ask, what's next? As in what can we do next? When can he start eating? When can he stop taking so many meds? What testing should we look into? What's the next step with his speech and language therapy? Obviously there are a lot of questions...

So I try. I try to talk to the Neurologist about testing. I try to get Pulmonary's recommendation on advancing his feeds. I try to get GI's input regarding food allergies. I try to get his Swallow Specialist to weigh in regarding his aspiration or lack there of. And I try to get them all to talk to each other, since at most visits it ends with a "Let's see what _______ (fill in any specialist) has to say."

This my friends is not an easy task. First, and foremost, just getting in touch with one doctor is darn near impossible. Multiple phone calls and messages are required. Then when you do actually speak to one, the conversation is usually rushed and ends with the above mentioned phrase. Oy vey! So getting multiple physicians to communicate with each other is like requesting an audience with the Pope. In fact I think my odds are actually better with the Pope.

And some may ask, why so urgent? Well, since we are clear of the flu and virus season, NOW is the time to try advancing Jackson's feedings, move to more solid foods, and away from tube feeding. The clock is ticking. We have exactly 4 1/2 months to accomplish this before the next flu and virus season and that's if we start TODAY. So let's take two weeks out of the equation which leaves us with 4 months. That's not much time since it seems there is yet more testing to performed before anyone recommends solid foods.

So while status quo was an acceptable and even welcomed level during the nasty winter months, it now quite frankly has me a bit wound up in sixes and sevens.

Tickets please.

Welcome to the eighth wonder of the world we like to refer to as the roller coaster of life. Everyone has taken a ride at one point or another, some voluntarily others not so much. Personally, I think one more spin around the old beast is going to make me yak.

Last week we had the privilege of adding yet another specialist to the list of providers currently seen by Jackson. Dr. Razzledazzle (sometimes I just can't help myslef) is a Peds GI specialist who we were referred to by Dr. R. What I expected to be a very nonproductive visit, which I predicted would include another version of the hurry-up-and-wait game, was quite the opposite. Dr. Razzledazzle was well prepared, took his time with the appointment, and it appeared he had actually read Jackson's chart prior to our meeting. (What a concept!) I was very pleased. (As the roller coaster clank clank clanks to the top and the anticipation of the drop puts a lump in your throat....)

I was even more pleased when he said to me, " I suspect Jackson has Eosinophilic Gastroenteritis". Now long story short, it basically means that he suspects that Jackson has a milk allergy which resulted in an overabundance of eosinophilia (a type of white blood cell) in the wrong places. It could accont for a great deal of his GI issues. So off for allergy testing we went. Simple enough. And simple enough to resolve if this was indeed the case. (Arms up as the car swings down and around the track...)

However, dear reader, as you may already suspect, it just couldn't be that simple. Jackson's allergy testing results came back this morning with a glaring NEGATIVE result to everything he was tested for. (And one more time through the dark tunnel which takes you upside down and sideways unexpectedly leaving you with a mild case of whiplash....)

Back to the drawing board. Could someone please tell me why we willingly wait in line for these things when everyday life often brings the very same sensations?

Positive news from negative results!

This morning I received an email from Dr. R, Jackson's Genetic Neurologist, indicating all the testing sent March 15 came back negative. This is great news. For if the testing had produced positive result it would have had a highly negative impact. Positive news from negative results!

I am thrilled with the negative results. I'd like to say that the diagnosis (or lack thereof) matters very little to me, but everyone would know I'd be lying. I'm not sure any parent could ever say that. So I will continue to scour the internet, the library and many other resources for information that may help us help Jackson. I will say though, that while I would like very much to have a diagnosis, I understand it matters very little in the grand scheme of things.

Three steps forward, two steps back...

Or is it two steps forward and three steps back? Well, whatever the case is dear reader, I'm certain you get the point.

And my point is this; there have been some positive and very encouraging things happening of late with regards to Jackson. And while I might not necessarily call it a set back, yesterday we encountered a new problem. Hence the step (or two or three) backward.

When he woke yesterday morning, Jackson's right eye wouldn't open completely, his eye lid drooping significantly. After his nap later in the day, it seemed fine. So it seems like nothing to be alarmed about, just one more thing to keep an eye on (no pun intended). Another possible clue to the puzzle that is Jackson.

And he continues to gesture and sign, albeit the response is usually delayed. But we're happy he's waving, attempting to blow kisses, clapping and signing "more" and "eat" somewhat regularly. Every little bit counts!

Affirmation!

While I was dressing Jackson this morning, Ainsley was in the room peppering me with questions about her upcoming birthday. (She's turning 5 on Sunday! I can hardly believe it!) Specifically, she was asking about the Irish Dancing Barbie we recently bought as a gift for one of her friends. She wanted to know if the store had more of them. To my surprise and delight, Jackson, upon hearing the word "more", put his hands together and signed "more". I was ecstatic!

Who ever thought that word recognition would be so exciting? Nothing like a little affirmation to keep you motivated!

Happy Bunny Day!

Knock on wood.

So everyone take a moment and find something made of, looks like, smells like, or even same color as wood and knock on it. Really, give it a good whack.

Now that that's taken care of, I can now safely profess the following: Jackson has no doctor appointments next week. Not one. No injections, no therapy sessions, no testing, no nothing. Nada. Zip. Zilch.

Wow. I am revelling in the amazement that is my somewhat empty calendar.

We hit the motherload!

WARNING: FOR THOSE OF YOU WHO HAVE YET TO EXPERIENCE THE JOY THAT IS A CHILD, PLEASE PROCEED WITH CAUTION. FOR THOSE OF YOU WHO HAVE, START NODDING YOUR HEAD IN EMPATHY NOW....

On Sunday, Jackson started with a bit of diahrrea. (Sorry, but it is what it is.) So Sunday, Monday, Tuesday and some of Wednesday went like this: Change a diaper, wipe him down, change his clothes and repeat. Interject a bath, a change of sheets, and a load of laundry here and there. Now after switching to a lactose free formula, things seem to have settled down a bit.

Tuesday morning after the first round of changing (his clothes AND mine) I noticed that his button site looked a little "crusty". So I did my due dilligence and cleaned it faithfully with a hydrogen peroxide and water solution. Wednesday morning I noticed that little blisters had appeared around the site. Thursday morning they were still there which warranted a call to the pediatrician. (Poor Dr. M! Sometimes I wonder if she just shakes her head whenever she sees our number on her caller ID...)

Dr. M confirmed what I suspected - it is likely a Staph infection. Boy did we hit the infectious disease lottery this week! First a lovely GI bug then on to a Staph infection. Now that's some Karma. So now we've begun oral and topical antibiotics in an effort to nip this quickly. The only problem is the anitbiotics will likely make the diahrrea worse....lovely. And Dr. M was quick to advise that we've got to keep a close eye on him to make sure the blisters don't get any bigger. If they do we're off to the pediatrician for some fun cultures.

Think happy thoughts people.

MORE!

For the past six months or so, we've been trying like the dickens to teach Jackson some signs. Really basic signs like Mommy, Daddy, eat, more, and sister. It seemed that we weren't making any progress and was getting a little frustrating. Especially since it is clear that Jackson has plenty to say, he just can't quite communicate yet.

Well, this weekend while giving him one of his daily small taste of baby food we got "more"! And this evening it looked like we got an "eat" as well. And he's repeated the "more" sign several times. VERY VERY exciting! MORE!

RE-FOCUS!

This morning, we a very long and arduous appointment with Jack's Genetic Neurologist, Dr. R. Six months ago we had our first visit with Dr. R and his initial impression was that he was unsure if Jackson truly had any neurological issues. During our visit today Dr. R observed Jackson, his behavior, his movements, and his communication skills. And after some discussion Dr. R confirmed what we have suspected for some time now. It is apparent that Jackson does have some neurological problems. The degree to which these problems will affect his development is unknown. And what the diagnosis is of the collective problems is and will probably remain unknown for quite some time.

During our discussion, Dr. R made a really important point. We have to focus our efforts on supporting Jackson, through his therapy sessions, through interactive and repetetive play. We need to put less emphasis on the actual diagnosis or lack thereof. It is not as important from a treatment standpoint to find a name for his issues as it is to help improve Jackson's day to day functions. And while after the appointment Jackson did have another blood draw in order to further analyze his chromosomes, it is highly uncertain and somewhat irrelevant if that testing will shed some light on the core and/or cause of his neurological issues.

So we go on. Day to day, trying our best to work with Jack to help him grow, strengthen and progress.

Those D@#% Tubes!

Really. Those freaking tubes. "They make a remarkable difference", we were told..... Um yeah, not so much.

So this is the second ear infection which has so thoughtfully made its way down into his lungs. He is coughing now during sleep and requiring nebulizer treatments throughout the night. Yeah, what a difference.

The ENT checkup provided us with the following information: his hearing is borderline normal. If he continues to have ear infections (especially ones without obvious drainage) we need to let the ENT know as soon as possible.

Great. In the meanwhile, we wait. What a phenomenal idea, because we haven't tried that before.....

Don't mind me, I'm just ever so slightly tired, and oh so remotely disillusioned.....

Those Darn Tubes!

When Jason picked up the kids from daycare on Thursday, Jackson's teacher commented that he was running a low grade fever and was pretty cranky most of the day. Friday morning his fever spiked, so off to the pediatrician we went.

I explained to Dr. T (Dr. M was on vacation), that I just wanted him to check his ears as a precaution because I knew the fever could just be a viral thing. He peaked in Jack's ears and before I could even finish the sentence he was shaking his head. "Nope, it's not viral." In his right ear the tube was actually clogged. Unbelieveable. So more Omnicef and Ciprodex for Jackson.

I suspect that at his ENT check up tomorrow, the doctor might suggest removing his adenoids in order to help his drainage. In which case, my personal feelings are to just take his tonsils as well. Just clean him out - the less obstructions in his airway the better off he'll be. But hey, I'm not a doctor.....

Shiny new toys....

A couple of weeks ago we got a new MacBook. And while Ainsley has had a lot of fun with the built in camera feature, I suspect Jason's new toy has brought him much much joy. Just like a kid on Christmas morning......his eyes glazed over with glee and amazement.

Signed, sealed, delivered....

Thank Goodness for Dr. M and staff! After what I am sure was less than easy research, it was determined that we could go to another Hopkins lab for Jack's testing - and not pay anything out of pocket. (Insert Halleluiah Chorus here)

So today, on the coldest, windiest day of the month, we trekked downtown to the Hopkins Outpatient center and had Jack's blood drawn. Signed, sealed, delivered.

Now we wait.

tick.............tock............

No really. We wait. Go do something useful already. ; )

I must have been Hitler in another life....

I was once told by a very good friend of mine that I must have been Hitler in another life. That's the only way she could think to explain my less-than-great Karma. And on Friday, the story wasn't much different.

Don't get me wrong. I don't think my life is horrible, or that there aren't others much worse off than me. Through all this, the one thing I have definately learned is that there are always kids who are much more sick than Jack whose parents don't necessarily have the resources to help them.

My dear dear Cousin Rick (bless his heart) is often quoted as saying "I couldn't make this stuff up", and Friday's activity definately falls into that category. I left work early to pick up Jackson and take him to the Hopkins lab for a blood draw so they can run the genetic test for Angelman Syndrome. I had to stop at the pediatrician's office first to pick up the lab form which was no big deal since the lab was in the adjacent building. After saying our "hello"s to the girls at the front desk (who have come to know us well), we picked up the form and off we went. After arriving at the lab, I handed in the form and was immediately asked for the usual documentation. Insurance card, Hopkins orange plate (it's the equivalent of a frequent flyer card). I fumbled around and handed over my cards (never leave home without them). The guy at the front desk then informed me that they don't have a contract with my insurance company. He then suggested that unless I was willing to pay for this very expensive genetic testing out of pocket, that I might want to try going to Labcorp. So I shoved my cards back into my overstuffed bag and started out to the car.

As I was walking down the hallway to the lobby, I thought it might be best to call the Pediatrician's office to make sure I don't need another form. Nothing would be worse than going all the way to Labcorp, only to find out that they won't take the Hopkins form. I plucked my cell phone out of the bag and called (they're on speed dial). Sure enough I would need another form. No problem. I hadn't left the complex yet so I just walk back up there to pick it up.

Once back at the pediatrician's office, one of the other physicians (not our usual Pediatrician) came out to talk to me. Apparently it doesn't seem like, or at least no one could be sure, that Labcorp is actually capable of performing this test. And with that in mind, we might have to fight the insurance company to pay the lab they don't have a contract with. But for now, we were told to just "sit tight", and we would hear from our usual pediatrician on this topic on Monday. Again I thought, no problem. The test takes 2-3 weeks for results anyway, so what's another couple of days?

Except now, I've stewed about it all weekend. The Hurry-Up-and-Wait is about to Hurry-Up-and-Kill-Me. It seems never ending. Day after day, week after week, month after month. It isn't bad enough that the test takes so long for results but now I know it may take longer because now we have to duke it out with the insurance company. And who knows how long that will take?

Any romantic ideas I had (not that I had that many) about the medical industry have been completely obliterated. Nothing happens like it does on ER or Gray's Anatomy. There are few conditions/diseases/syndromes or whatever that can actually be diagnosed with a simple blood test/xray/ultrasound. Most diagnonsis are arrived at by exclusion, meaning that you start at the top of the list and cross off the ones that don't seem to apply to your situation. The problem with this is that it can take years and years to properly diagnose a person. Our Genetic Neurologist once warned me that it may take 10 years for us to put a name to Jackson's condition (assuming there is one). There is no test to tell us that he's absolutely fine and will catch up developmentally. And there's no test to tell us that he won't.

I do however have to say that most of our doctors have been outstanding. I mean really outstanding. Our Pediatrician has us on speed dial. She's given me her home and cell phone numbers and doesn't hesitate to book our appointments for 45 minutes as opposed to the usual 15 minutes allowed for most patients. And she is patient with me, oh so very very patient. Our Genetic Neurologist calls me almost immediately after reading one of my frenetic emails regarding my lastest suspicions. He's actually won an award for Outstanding Compassionate Care. And so far none of them have called me crazy (that I know of).

So until we get more "clues" to help solve the mystery that is Jackson, we just have to "sit tight". Right, bound and gagged. Anyone have some duct tape?

Bittersweet

I started this blog as more or less an outlet. A way to keep people informed who wanted to be informed and provide consistent information regarding Jackson's health. Yesterday one of my co-workers passed the link on to another co-worker who, after reading the postings noted great similarities between Jackson and his nephew who was just diagnosed with Angelman Syndrome.

With this information in mind, I quickly hopped online to check out the details of Angelman Syndrome. When I read the description of symptoms it seemed eerily too familiar. Not able to leave any stone unturned, I winged off an email to Dr. M and our Genetic Neurologist, Dr. R. Shortly afterward, there occurred a flurry of phone calls and much discussion.

During our discussion last night, the neurologist was careful to point a few things out; Firstly it is rare to diagnose a child below the age of three. Secondly, the symptoms he has are also markers for about 500 other neuro-genetic disorders. And thirdly, 10% of patients diagnosed with Angelman syndrome do not have the gap in Chromosome 15 which is what the genetic testing is meant to determine. So in theory, Jackson's results could be negative but he could still end up being diagnosed with Angelman syndrome, although it wouldn't likely happen until he was older.

So today, I am taking Jackson to the Hopkins lab for a blood draw to test for this rare neuro-genetic disorder. The results of which won't be available for several weeks. But by now, we've gotten pretty good at the Hurry-up-and-wait game.

As time goes on, there is more and more evidence that Jackson's developmental delays are not just a result of multiple hospitalizations. The doctors are now more convinced that there is almost definately a neurological disorder/syndrome which would account for his delays. But finding out which disorder/syndrome he has could take years.

So all in all, it is bittersweet. A possible answer to all our questions. And while it is certainly not the answer we were hoping for, we remind ourselves it could always be worse.


To learn more about Angelman Syndrome visit:
http://www.angelman.org/angel/index.php?id=75

http://en.wikipedia.org/wiki/Angelman_syndrome

A weekend away....

Jason and Ainsley left Friday morning and drove to Allentown to visit his Mom and go skiing for the day. It was Ainsley's first time on the slopes and they were both excited. In fact I'm not really sure who was more excited. Friday afernoon when I spoke to Jason, Ainsley was in the midst of a skiing lesson and loving it.

I had planned to spend a quiet weekend at home. And while I would have loved to get away, it is Jack's best interested (as we have been told by numerous doctors) to stay close to home and avoid any unneccessary travel. So a quiet weekend it was. Ha ha ha. Friday Jack ran a fever and had a little cough.

By Saturday his breathing was labored and severely marked with stridor. Off to the ER we went. After an evaluation and four hours of quality ER time, Jack was admitted. Just in time for the snow.

Sunday morning when we woke up (and I use the term "woke" loosely - I'd hate to imply that anyone of us slept) it was really beautiful outside. Our room overlooked the original domed Hopkins building and in the wee hours of the morning someone built a great snowman, although the creator failed to dress it at all. I suspect it was a medical student from somewhere like southern California or Arizona who had never seen snow and was overcome with romantic ideas of snow. The next morning I peeked out to see that the same medical student must have gotten his/her hands on a bottle of Mad Dog and come to grips with the fact that snow is only pretty and fun when you don't have to walk to class in it. The snowan met its match with what I can imagine to be a baseball bat.

Monday Jack was well enough to be discharged and we came home. Home to unpack, do laundry and prepare for the rest of the week. So as it turns out, we did get away for the weekend - our destinantion included a lovely room complete with sitting area, a view, and an "attendent" to wait on us. If anyone is interested in trying Chateau d'Hopkins let me know. I know the concierge really well.

My Cup Runneth Over....

So two weeks ago, Jackson had a checkup with his Pediatrician. Usually when we see her, it is a warm and fuzzy experience during which she oos and ahhs and checks him out in between his infectious belly laughs.

This visit was a little different. Jackson was of course his normal social and pleasant self. But during the examination, Dr. M (as we'll call her here - and not to be confused with Auntie M) noted that she's got some real concerns. Jack isn't really communicating - and we've been trying and trying (for over six months now) to get him to pick up some simple signs - Mommy, Daddy, eat, more.....but he hasn't caught on. He doesn't respond to "where's mommy?" He can't point out objects or people. His movements are very stiff - and while he's starting to walk - it is very stiff and from the hip. So we left the office feeling less than excited about what little progress we've made.

glug glug - 1/4 of the cup is filled

On Valentine's Day there was snow, ice and no school. So I stayed home with the kids. Jack woke up at 7:30 cranky because his tube had disconnected so his crib and pjs were a bit wet with formula. I changed the bed, gave him a bath and dressed him. Still cranky. So I thought maybe he was still tired and put him back to bed. He slept until 10:00am - at which point I peeked in to check on him and his eyes were open. So I picked him up and carried him to the family room. By the time I sat down on the couch, he was asleep again. So I carried him back up to his room and laid him in his crib. At 11:30 he finally woke up. He was still a bit fussy but managed to play a little. By 1:00 he was out again and slept until 3:30. I was pretty concerned about this and called the Dr. M to discuss. She said as long as he was alert and I was able to wake him at some point not to worry. Right, because its just that easy to write off odd behavior in a kid that already has symptoms of neurological issues....

glug glug glug....3/4 of the cup is now full

So that brings us to yesterday. Jackson had cognitive and occupational therapy scheduled. The therapists come to the house which is great, and by now we've come to know them (and they us) pretty well. Both therapist noted that his responses are significantly more delayed than previously. He seems to have a slight shake to his movement and is really wobbly. And his eye movements are markedly worse. I relayed to them the excessive sleepiness episode from last week and they were both concerned for neurological reasons. Seizures? Stroke? Or what?

glug glug glug glug...add some more to the cup

So today we are all playing phone tag. The therapist calling Dr. M to discuss their observations, Dr. M calling the genetic neurologist, and the genetic neurologist calling the pediatric neurologist and all of them calling me on my cell phone (there go my minutes!). The result of all these calls will likely be another round of let's just wait and see. It is the favorite past time of Doctors and insurance companies and my biggest pet peeve.


glug glug glug glug ....Okay. Enough already. It reminds me of having to drink that miserable 4 liters of emulsified polyethylene glycol a day before your colonoscopy..... and leaves me with about the same disgusted feeling. ughhh.

So let's catch up...

For those of you playing the home version, here's a brief recap...

Since February 2006 Jack has been hospitalized twelve times.

He has had six minor surgical procedures and one major surgery.

A G- tube, a Mic-key, and now tympanostomy tubes (aka tubes in the ear).

Rounds and rounds of oral steroids for the lungs, inhaled steroids for the lungs, steroids for for the skin, and steroids for the ears.

And of course, antibiotics. Amoxicillin, Augmentin, Omnicef, Azithromycin, Augmentin ES 600 and Ciprodex.

MRIs, Cat Scans, EEGs and a Spinal Tap.

Scores of doctors, most of which have been extraordinary.

Then there's the therapists: cognitive, occupational, physical, and speech.

But through all of it he is still Jack. Happy Jack.....